Can I bring to the attention of all those in NZ, that there will be a Memorial Service for Jeremy Clark on Friday March 10th at 11am. It will be held at St Barnabas Church, Fendalton, Christchurch.
My tribute to Jeremy Clark:
“Ziad Abdelnour said a truly rich man is one whose children would run into his arms even when his hands are empty. Jeremy Clark was a wealthy man indeed. A loving father, he was able to be both gentle and tough, firm yet loving, and has been a great supporter in my various endeavours. A man I have greatly admired, he has been a valued role model, showing me what it is to be a patient, humble and kind man, slow to anger, and quick to apologise when wrong.
Many examples of this come to mind. In particular, I remember when a homeless man came into his church, hungry and asking for food. Never a man to turn people away, he took him around the corner to the local chippie and bought him a hot a meal. This simple act of kindness has long stuck with me, and I think it’s indicative of the sort of man he was. There are many other such stories, and I’m sure many here today will have their own tales of his servant heart, and his real care for people too.
Of course, he had his playful side as well. I recall all the play-fighting with him throughout my childhood, in which my brothers and I would swarm the poor man, climbing all over him and holding his legs together to trip him up. He was hopelessly outnumbered and didn’t stand a chance, but that serves him right for having four sons. I will also fondly remember the adventures of rhubarb the banana, the central character in many stories he made up for us as children.
During my teens, I also came to appreciate his intellect and quiet wisdom. Never a man to impose his advice, but glad to give it when asked, his suggestions were always thoughtful and carefully considered. I would enjoy quiet countryside walks with him, in which he provided thoughtful conversation or just quiet companionship. Indeed, his quiet demeanour was something I loved very much about him. We would also listen to music together, and he’d explain the history and meaning of each piece. In his final weeks, I would play that music for him, and in turn tell him about each piece, just as he had told me.
They say that the greatest thing a man can do for his children is to love their mother. This he did too; he has been a faithful and loving husband to my mother for 27 years. Likewise, she has been a most devoted wife, especially in looking after him throughout his cancer and deterioration, which I know was not easy. A testament to their strong partnership.
Lastly, my father was a man who loved Christ, and his faith has greatly impacted the sort of man he was. With a real heart for the gospel, his ministry has always been down to earth, and has touched many lives, making a real difference for people in many places, whether they were a part of his congregation or not. He spoke to me several times about how he looked forward to entering Heaven. I expect he shall be welcomed with those words from the book of Matthew: ‘Well done, good and faithful servant.’
I shall miss this man of gentle fortitude. I am sad that he will not be there for my graduation, my wedding should I marry, nor to meet any of his grandchildren, and I shall miss his guidance, but I am grateful for the time I have had with him. My last words to him in our final conversation were to repeat something I had told him several years prior: ‘I may be taller than you, dad, but I will always look up to you.’
I am honoured to be called his son.”
A few hours before Dad died, I got home from the hospice and decided to watch one of our ‘family memories’ DVDs which have been so precious to us, particularly watching them since Dads diagnosis. And so there we all were, all 7 of us back in New Zealand in the year 2000, all of us much smaller and much cuter… except mum and dad. But as I sat there watching, I couldn’t hold it back, I was absolutely weeping. Not because I was remembering that my Dad was lying there in a hospice about to die nor because I was preparing to loose him but simply because there we were, my family, as a unit, all together and all so innocent.
There was me and Lydia dancing as we slapped the keys on our little keyboard, Tom riding his tricycle repeatedly into the hedge for no apparent reason, Simeon making threats of war whilst dressed up as a roman soldier named Claudius, Benjy was just there which I found to be so special and finally behind all of it was Dad, the man with the camera. Even through the way he filmed you could see glimpses of his personality, his massive love for his family, and so I sat there weeping knowing we could never be how we used to be. There was no discussions or debates or arguments round the table about philosophy, theology or politics. No real reason for any of us to be upset and none of us by this point had known any real pain. We were comfortable and we were happy.
But I’m glad I don’t have the option to go back because I would always take the choice of comfort and ignorance, but as Paul says in 1 Corinthians 13:11
‘When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways’
See, I actually quite like the arguments we have around the table but I’d certainly rather go back to how were, but instead here I am, standing in the same place I stood 21 months ago when I spoke at my oldest brother’s funeral, and here I am now speaking at my Dads. But this is the path God has called us to be on, and I knew no one who had a greater sense of that then Dad. Philippians 1v21 is a beautiful verse:
‘For me to live is Christ, to die is gain’
and whilst I love this verse, I feel like it somewhat overshadows what is said straight afterwards which is so key to understanding Dad.
‘If I am to live in the flesh that means fruitful labour for me, yet which I shall choose I can not tell.’
Dad lived this out. This verse totally changes the meaning of ‘To live is Christ, to die is gain’ because it no longer seems to be ‘yeah life is alright but heaven sounds a bit better’ no! Christian life is not comfortable it is not meant to be easy, it requires labour, fruitful labour! And Dad knew this and lived it out.
In a letter Dad wrote to me back in 2012 when I couldn’t care less about my faith he said this
‘My greatest wish in all the world with you as my children is not that you’d be rich nor successful nor popular, but that you’d be committed followers of Jesus Christ. That you would somehow have your eyes opened to see what I saw when I was 19.’
My whole life I have seen such a good example of Christ-like leadership not only in Church but also in the home, but most importantly it felt so organic. Many Christians, myself included, recognising we are called to be humble, gentle, spirit filled, self-sacrificial people try and apply it, but once our feathers are ruffled or something major happens we get knocked back a few steps, but the interesting thing about brain tumours is that they strip all your filters and all your inhibitions back and what we found with Dad is a man who was still very much a gentleman, a man who asked us to pray for him because he couldn’t keep track of his words, a man who was weeping, not out of fear of death but purely because he knew we’d struggle without him, and a man who kept asking if we can sing songs together to glorify his precious Jesus. But, most special to me is that most fundamental thing about Dad that never changed which was his hatred of the idea that there would be people in hell asking ‘Why did Jeremy not tell us about Jesus?’ 4 days before he died I walked in to his room slowly as I wasn’t sure the nurses were finished with him yet, so I stood behind the curtain and I could hear him speaking; there he was, on his death bed, telling a nurse the good news of Jesus, explaining to her where he’d be going in a few days and how she can have that peace that surpasses all understanding too because of what Jesus did 2000 years ago. I stood there and I cried my eyes out because I had got this weird thought in my head that this wasn’t really my dad as I knew him lying on the bed, but this was clear proof that this was very much the Jeremy Clark I’ve loved so dearly. Dad has left all of us in the family a book each which he had been writing between when he was diagnosed up until this September just gone, and two quotes that consistently appear in the book he wrote to me was one that was very special to us from Jim Elliott
‘He is no fool who gives up what he cannot keep to gain what we cannot lose’
and now we see that clearly, he has not kept any clothes, any books or anything from this life but he has received something eternal that he cannot lose now as he stands in the presence of his creator and the lover of his soul. The other one was one he would always use to gently remind me whenever I had something negative to say about someone from school or church or any acquaintance of mine.
‘God loves them and Christ died for them’
Does this not show his heart in only a few words? This man loved, and was loved by so many and I’m sure we’ll struggle immensely both as a family but also as friends without him but now we have those words of 2 Corinthians 4:16-18 which are ever appropriate:
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
I don’t really know where to start. My father was the most amazing, inspirational and loving man I have ever met and I’m so blessed and proud to have had the privilege of calling him my father. For as long as I can remember I have always been such a daddy’s girl and loved every single minute I was able to spend with him. I don’t remember much of my early childhood, but one really vivid memory I have with dad was when we played hairdressers. He would sit in the chair while I used my wooden spoons to ‘cut’ his hair and use almost a whole tub of hair gel styling it, and he would sit through this without a single complaint. Even when he was stressed and needed to get work done for church, he would still try to make time for me. Dad also had this really beautiful blue classic Citroen DS, which was occasionally used for weddings, and when I was younger my absolute favourite thing to do was dress up in my dress-up wedding dress and pretend to be a bride. A very precious memory I have of me and dad is when I put on my ‘wedding dress’, mum’s veil and held her fake flowers and then I would sit in the back seat of the decorated DS, while he watched and took pictures being a very proud father of his baby girl.
I think a great way of describing dad is as a big child. One Easter I will never forget is when we were all sat at the kitchen table and he collected all of his Easter eggs and started running around the room, clucking like a chicken and then he would squawk at us if we tried to take the eggs.
As I said, I really don’t remember much of my childhood, but mostly all of the memories I do have, somehow involve him, and as much as I’m struggling with the fact that I can no longer make more memories with him, I feel so much joy about where he now is, and I would not ask him to come back for anything. I’ll miss him like crazy but I know he is now with my brother Ben but most importantly Jesus and I feel so excited for him. So all I can say now is goodbye my precious daddy and as we always used to say to each other, I’ll forever love you to God and back.
Faithfulness, Peacefulness, Hopefulness, Dignity
Faithfulness, what is faithfulness?
Faithfulness is devotion, loyalty, allegiance.
All of these displayed in these last days.
Jeremy’s faithfulness to his Lord and Saviour never faltered. He trusted him every day knowing that his future lay with him. Father’s faithfulness has never changed. He has walked with me and the family everyday including these last two very difficult years.
Peacefulness, what is peacefulness?
Peacefulness is amicable, patience, composed
All of these displayed in these last days.
As a family we have truly known the peace referred to in the Bible. A peace that passes all understanding. We have had to show incredible patience in Jeremy’s last week of life. Dreadfully ill with cancer but of course a strong and young fit heart within the same body made the waiting tough for us. Desperate for him to go and meet his maker, the maker of heaven and earth, and be reunited with Ben, we have had to work hard to keep composed.
Hopefulness, what is hopefulness?
Hopefulness is cheerfulness, happiness, gladness.
All of these displayed in these last days.
Jeremy always knew where his ultimate resting place would be; so did we. It was with cheerfulness we eagerly awaited his passing from Earth to Heaven. It was with happiness we let him go knowing he was going to a place so amazing. It was with gladness we settled down on mattresses on the floor for 3 nights in his room at the Hospice. Those moments we will treasure for ever.
Dignity, what is dignity?
Dignity is distinction, character, decency.
All of these displayed in these last days.
Even though we spent the last 4 weeks of Jeremy’s life in the hospice, he still showed distinction. A young man, ravaged by this dreadful disease we call cancer, was still dignified to the end sharing his hope for his ultimate future. His strength of character as he had to deal with the tumour on his neck getting ever bigger, shone through. The Hospice staff were absolutely and totally amazing. Right to the end, when the only clothing needed was a ripped back t-shirt, they kept his dignity by washing him, turning him, keeping his meds up and treating us as the family so thoughtfully and kindly. Jeremy always said, if he became too ill then the Hospice was where he wanted to end his days.
Thank you to all of you; to our friends who have walked with us in thought and prayer. We are just so grateful. Thank you to the Hospice staff for making Jeremy’s and our lives easier in these last weeks. Thank you to my Father in heaven for giving Jeremy, me and the family a hope and a future. And one huge thank you to the wonderful man, who crossed the world to find me and walked the daily path with me for these past 29 years. I am who I am because of you. My children are a testament to the love we shared and I am going to miss you so, so much. Rest my darling in the arms of our saviour and know I am glad you are reunited with our son.
It is January 26th 2017. I am sitting in the family room at the hospice. It is completely silent; the peace is incredible. Jeremy is breathing so,so quietly. His breathing is fast and there are indications of colour change. He still feels quite warm but this could be due to infection which is masking the coolness of death. We are ready to let him go. We have slept on his floor for the past 3 nights and that has been fun but we need to get used to our new normal. He has fought well and we can’t wait til he reaches heaven. I had such a sense of the anticipation for his arrival on Tuesday afternoon.
We know he is in his last hours and we sit and wait by his side. We have told him constantly that we love him, that he is free to go and that I will be with him to the end. We all were able to say significant goodbyes on Saturday and on Sunday evening a wondeful friend brought communion to us at the Hospice. We realised today that it was his last meal. He went to sleep shortly afterwards and has never really woken up. Each day this week we have been told departure is imminent but at 4.30pm on Thursday we are still at the same point.
But at 4.01am on Friday January 27th 2017 I heard him take his last breath and blessed him on his way to the most amazing place, with the Lord Jesus Christ where he will be constantly worshipping the Father. We couldn’t wish him to be anywhere else. Jeremy you have been the most amazing husband, father and friend. We love you so much and know you have heard the words “good and faithful servant.”
We are having a service of Thanksgiving at 3pm at Belmont Chapel in Exeter on Saturday February 11th. We do so hope you can join us to celebrate this wonderful man’s life.
Please forgive me for the delay in sending this. As you read on you will hopefully see why.
We had a wonderful Christmas Day. Jeremy was hilarious and very witty. We all kept collapsing in fits of giggles. He managed to get downstairs for both brunch and late afternoon Christmas dinner. This was amazing as he hadn’t been able to come down the stairs or sit at the table for a few weeks.
However Boxing Day dawned a different day and he fairly rapidly deteriorated over the next few days. On Friday December 30th I woke early. (Jeremy had been unable to climb the stairs the two previous nights so had remained in the spare room on our middle floor. He also had not had enough energy to get to the bathroom for a shower, use the toilet or generally move about.) I remember sitting on the stairs waiting for him to come out of the bathroom. It surprised me that he had got himself there. He was ages in there and I became increasingly worried. Eventually I tried the door and it was locked. After calling his name I discovered that he had had a fall. So there he was, on the floor locked in the bathroom. Panic took over but eventually I got him back to bed. Then the next challenge of the day was getting him into the bath. I did but Tom and I really struggled to get him out.
The result was that when our wonderful community nurse visited from the Hospice I landed in a heap. The decision was made there and then to get him to the Hospice. It was with a mixture of relief and sadness. Having left him there I came home and the tears fell as I realised we had reached a very new stage.
It has been amazing having the Hospice taking over the daily nursing. This had got too much for me to manage. It has also provided me with the chance to go to school which for me is such a lifeline.
Here we are today, two and a half weeks later and Jeremy is needing help to fulfil every small daily function and I am sitting typing this next to him. He had a massive seizure on Wednesday night and as a result, since then, one of us has slept at the Hospice to be near him. The last 3 nights we have had the wonderful opportunity for Jeremy to have a private room with another bed in it. Tom occupied it for the first night and I have for the past 2. I have had the best nights sleep since Ben died. I will sleep here again tonight.
The plan is to move him to a nursing home in Alphington on Monday (tomorrow) for his final few weeks. I have been advised we are probably looking at 3 weeks maximum. Alphington is where Jeremy was vicar up to 5 years ago and where Ben is buried. It is where Jeremy will finally be put to rest so this feels like a good move. One of the carers there told me that she had nursed Ben in ICU.
I continue to go to school – my safe place. I am trying to maintain mornings. This is a good balance and only made possible with Jeremy being cared for away from home. Lydia has been travelling the country for interviews and we are so proud of her that she has been offered a conditional place at my old college, BGU, in Lincoln. She has had positive feedback from others but not had firm offers yet. Wonderful that while Jeremy still has a bit of cognitive ability, he has been part of the celebrations.
The boys continue to carry on their lives whilst being aware of everything happening with their father. Simeon has been such a wonderful support to me, helping me choose a nursing home, visiting Jeremy daily, particularly at times that I am unable to. He has been ferrying people around, especially picking up Tom at 1.30am on Thursday after Jeremys seizure and delivering him to the Hospice.
We are looking to the future, aware it will be different, but trying to make positive plans. We are all facing quite significant decisions at this time regardless of Jeremy’s condition.
Thank you for your continued love and support.
Since I wrote nearly two weeks ago, several things have happened. The first is that yesterday December 8th we met with Jeremy’s oncologist and he agreed with us that our best course of action is to cease treatment for his cancer. We have drawn “a line in the sand” and for very good reason.
I wrote on the 26th November that if all tests came back as satisfactory then he would start on the tablets debrafinib. The tests did come back normal, so on Tuesday November 29th he started taking 2 tablets in the evening. On Wednesday 30th he continued with this treatment. It was meant to be my last day at home before returning to school. That evening Jeremy had a very confusing spell trying to work out how “Watchdog” on the TV related to the chicken meal that he was eating as he watched. It took some calming down and convincing to persuade him there was no relationship between the two.
On Thursday morning I got up early to go to school and Jeremy became extremely agitated and seemed to be confused and disorientated. I felt awful leaving him and going to school but handed duties over to Lydia and then she to Joshua. I rang at lunchtime and the very kind person sitting with him said he had had a good day. I had a fabulous day back at school but got home early as a good friend was dropping in on her way home from work. She and I sorted out a prescription that he needed and she left. As the evening progressed he began to vomit, despite being on anti-sickness pills for a while now.
Next morning not only was he very agitated but he also kept vomiting. I left Lydia trying to feed him and give him his medication but she rang me at school in tears and in tears I had to contact the hospice team from school. They were amazing and sent a nurse out to Jeremy within the hour. When I got home at 11am she was sorting an injection to stop the vomiting. It was a very difficult and tense day and despite nearly being admitted to the Hospice as we just could not get on top of his symptoms, he eventually stopped throwing up, he then was able to take medication to ease the pain and slept peacefully. We kept him off the cancer fighting drugs in case these were the culprits.
4am on Saturday morning I turned over in bed. Boy do I wish I had not! Jeremy was bolt upright in bed and was being decidedly weird. He informed me he had been downstairs and made a cup of tea. I was horrified. He is not safe on the stairs and as for boiling the kettle; well! I calmed him down then heard a small voice “Mum can you get me a sick bowl and a glass of water?” Lydia was feeling sick. A few minutes later and heavy footsteps were heard and a deep male voice. On inquiry Joshua answered that he too had been sick. So it seems one had a reaction to his meds, another had a sick bug she had picked up from placement and the third had food poisoning. How random and what are the chances?
Saturday was an odd day with everyone lying around. Jeremy needed lots of care and was very forgetful. He needed loads of reassuring and as a result a Marie Curie nurse was offered to sit with him as he slept through the night. We all had an amazing sleep. Tom visited for 4 hours on Sunday and remarked how slow Jeremy was. We have kept the house as clam and peaceful as we can. We have had marvellous support from the Hospice Team. We have been visited by the District Nurse and the GP and by Monday Jeremy was in a much better space. I felt we actually connected. Tuesday was a fabulous day and he was able to chat on the phone to two separate people. He and I definitely connected as adults and we felt more like a couple. Jeremy was able to thank me for the way I was caring for him and it was a very positive day. Wednesday and yesterday have not been quite so good as he has been very sleepy but so much better than last week. It is our 27th wedding Anniversary today and we plan to go away for a couple of nights now that he is more stable.
And so it was we went to the hospital to see the oncologist. We had decided, having seen Jeremy on Tuesday in so much of a better space, that that is how we want him to be. Not the confused and agitated figure we had seen a few days before. I come full circle to the start of this post. He is on a lot of medication to manage the symptoms, has an even worse memory than he had before, needs lots of sleep but we feel peaceful. We have made the right decision and so we now wait. We look forward to being together for Christmas. We know New Year will be tough but as we enter what must be the last few weeks (as many as make months?) of having this wonderful man Jeremy in our lives, we are so grateful for the role he has played and we feel truly privileged to call him “husband” and “father”. We love you Jeremy James Clark and will always, always hold you close in our hearts. You have inspired many, walked the road confidently and we know that it won’t be long before you stand before your/our Heavenly Father and hear the words “good and faithful servant”. We rejoice that because Jesus has defeated death on the cross and made a way back to the Father you will be reunited with Ben and together you will be in His presence, singing praises to the Lord God, the Creator of the universe. How Amazing!
A week ago, Friday November 18th , I came home from school at lunchtime in order for Jeremy and I to go away. Kind friends gave us vouchers to use at a local Retreat Centre when Jeremy retired. As I walked into the kitchen with my school bags, Jeremy could be heard coming down the stairs. What then played out had all of us feeling quite concerned.
Jeremy could barely walk into the kitchen or stand up.
I managed to get packed up, fill the car and we set off just after 3pm. On arrival, it was difficult for Jeremy to walk any distance. We finally got ensconced in the lovely cosy lodge, once I had emptied the car. Jeremy managed to sit in a chair and watch some TV that evening but that was his limit. He appeared weak, slightly confused and very vulnerable.
To cut a long story short by Saturday I had group messaged the boys and told them we had reached a very serious stage. Dad was unable to get out of bed, get in the shower or walk by himself. I called Tom home and made plans with Joshua to return home asap on the following Friday. We were unable to leave the lodge at all on Saturday and Jeremy needed constant watching even when sleeping or washing. On Sunday Jeremy managed a short shower with supervision and we went for a walk but 20 minutes was all he could manage. We arrived back home that evening and all could see the rapid deterioration that had taken place.
It has been a tough week. We have been visited by a Hospice Nurse and an OT to try and make changes to the bed to aid getting in and out and work out a way to make showering possible. We have been at the hospital many times; had blood tests, an ECG, talked with the Registrar and the Consultant. Jeremy has lots of drugs to take which have now been dispensed into a pill organiser to ensure he has the right ones at the right time. His parents have made the tough decision to return to NZ and we have moved down to the spare room on the middle floor. We hope this will make living easier for Jeremy and conserve some energy. We also hope that having the spare room near a bathroom and the living room we can differentiate much more, daytime and nighttime. A double bed is the only sacrifice; 27 years of a king size makes this much smaller bed a tricky option.
We have cried, laughed, hugged, made tough decisions and generally tried to support each other so that we don’t lose perspective but do face things realistically. Jeremy has spent most of the time in bed, a great deal of it sleeping. He has needed a stick to aid his walking and have showers supervised. I have bought him a lovely new towelling dressing gown like the one I bought him two years ago to keep him comfortable and cope with sweats when they occur. If clothes are no longer the best option, a choice of comfortable dressing gown is a must.
Treatment was ceased on Thursday but as long as all tests come back positively, on Tuesday he will resume taking the tablets he was on in February until April but this time combined with another. The symptoms seen over this week are the result of swelling to the brain. Steroids have been increased in an attempt to combat this. If the swelling is a result of the radiotherapy then we should see some improvement very quickly. If disease caused then we might not see such an improvement. We have been told there is increased disease activity but not in any of the major organs, other than of course, the brain.
We remain as a family resting on the arms of the Lord. We sit in the palms of his hands but we walk a very realistic and daunting path. We have whispered to each other “I am not sure we will get to Christmas”. We face the celebrations at the end of the year cautiously. We enjoy visits from family and a few friends but with me being off school for the time being we have definitely entered a new phase.
We value your prayers and thoughts and many acts of kindness. For me to know that you are all out there helps me enormously.
I sometimes find myself quietly chuckling each time I start to write a fresh blog post, as, for some reason when I’m looking for a way into the first sentence, I easily hear the voice of John-Boy from my favourite childhood TV show, The Waltons. His gentle tone – in reality it was the show’s creator Earl Hamner – providing the opening narration to each episode depicting his memoirs of early family life, seems to have left an impression on me, giving me a sense of tone, pace and pitch as I start each time to write and describe life, not on Walton’s mountain, but in the familiar yet still strange land we as a family inhabit.
But this last ten days it’s been the Waltons come to life around here as my parents, Trish and Nick, my sisters Anna and Julia, and brother Hamish, then later joined by my brother-in-law Simon, have all arrived in from either Christchurch NZ, Melbourne or Vancouver. And that was preceded two weeks before by my other brother-in-law Kelvin coming for a few days from Melbourne to spend some time with me. At one point during last week, if you were here, you would have heard, “Good night, John-Boy”, “Good night, Mary-Ellen”…well, if you know the show, you’ll know the patter.
We had a good time together, with Ma and Pa now staying on for a few weeks. But we all knew why we’d come together, even though we’d done it before shortly after my diagnosis two years ago when we thought I only had a very short time to go, not realising how amazing an effect the new immunotherapy drugs would have in that first year, to say nothing of the chorus of prayer.
This time however, we’ve all sensed that there’s been this fresh line in the sand drawn with not only my brain tumours, but also the increasing appearance of more and more small melanoma tumours just under my skin all over the front of my torso and the fresh increase of the tumour on my neck, all indicators of drug’s lessening effect. That, combined with a conversation Catherine had with a friend very experienced in palliative care, was sobering but really helpful. She indicated that while I seem relatively active and well, she has witnessed some like me suddenly decline rapidly within even a week.
So, rather than dancing round the ‘elephant in the room’ while we were all here in Exeter together, we gathered intentionally on Wednesday morning then again after our meal on Saturday evening to talk about what is going on for each of us as we confront and work through the strong possibility – as painful for us all as that is, including me for them – of my death in the next few months. It was a truly precious time of sharing and being together, enabling me also to say and share something of what I needed them all to know in the clearest terms – that if they were worried for me, they needn’t be as I was feeling so utterly peaceful for myself in the middle of it all, knowing that I have a Saviour who’s taken care of death, beaten it and that I was so aware of His hand on me, and so therefore on all of us, as we walk on. As well, my passion and love for all that the Bible describes of Heaven and my excitement in anticipating it, were as pronounced as ever.So, these times of sharing and being together, along with some great days out – to Looe, to Bath and over to Moorlands College and Christchurch, Dorset – allowed Catherine and Lydia to have a good half term break, and allowed us all to create some precious memories together.
Catherine and I were also blessed to attend a weekend away near Daventry in mid-October with the amazing Care for the Family’s Bereaved Parents Support network. We approached the weekend not sure how it would feel as, to some extent, with the recent news on my cancer spread we realised that we’d subconsciously ‘parked’ our ongoing grief for Ben to one side as we were dealing with our latest news. But going along, helped us reconnect and, I suppose, reintegrate those things as we spent some time with other parents. Truth to tell, it was a weekend with painful depths to confront, but gave much at which to smile, and be both still and thankful.
I’ve been so encouraged by a number of old friends who’ve travelled both from near and far away to see us in recent weeks. They’ve encouraged us and reminded us that we’ve been placed in an amazing family called the body of Christ. Each visit and times spent also with local friends have been heartening and uplifting. Two conversations rate particular mention, both with longstanding friends – Chris Edmondson and Jonny Elvin. Within both, we spoke about God’s grace. At times, to my natural mind, it seems so far fetched – so amazing – that Christ has done all we need as we face life and eternity. My head sometimes says, how so? No good works to earn it? No ‘something else’ to top it up to be forgiven, to be in a right relationship with God ? No heavenly brownie points to gain to be safe and secure with God through life and beyond death? No, no, and no. It’s ‘simply’ repent and believe in Christ who died for you. As I spoke with both about it, I simply said, “Tell me it’s really true”. “It’s true”, both said. Amazing grace. It’s the one thing that truly breaks the old rule that says, “if somethings sounds too good to be true, it probably is”. Not this one.
We’ve also had so much love and care from our local community group at Grace Church with meals, accommodation, lifts and other practical help, which has been immense. One night, the guys from my blokes group, seeing it was a full moon, decided to head up onto Dartmoor, to Hound Tor, where we stayed sheltering next to the Tor, in the dark for an hour or two, having a laugh, sharing communion in the moonlight, praying for each other, worshipping and taking in the vast landscape of Devon in front of us, lit by the moon above and the lights of the villages and towns in the distance.
But among all these activities, Simeon, still on crutches, sat and passed his car driving test. Crazy determination.
Well, as I face my next dose of pembrolizumab (aka Keytruda) this Friday, I’m conscious that the time may be closer when the drug may be withdrawn if it seems it’s still having no effect. In the meantime, I’m starting to feel the effects of some surface tumours, becoming quite sensitive and tender. I’m also finding I’m needing to marshal my speech occasionally – the free flow of words isn’t what it was. The decision about the drug won’t be until we get the result of my next scan due in a couple of weeks. Because of that possibility, I’ve felt that it’s been worth asking whether I should be applying to join in any available drug trials for new release medications. That’ll be a conversation taking place over the next week or so.
In the meantime, in my ongoing daily Bible reading, I found some fresh encouragement from the Old Testament book of Habakkuk. I once heard a seasoned older preacher saying how important it was to make sure you knew at least something of the main message of each book in the Bible, even some of the more obscure ones, like Habakkuk. He said, “Wouldn’t it be awkward, if you were in heaven, and Habakkuk came up to you and asked, “So, how did you enjoy my book?” Wouldn’t it then be just so awkward having to spend eternity trying to avoid him?!
It’s a short book written in the late 7th century BC mainly containing a conversation between God and the prophet Habakkuk regarding Habakkuk’s real disturbance about his nation, about all the unchecked violence, injustices and empty religion he was seeing – things that were happening which seemed so appalling. The conversation develops over the three chapters. And God lays out before Habakkuk what he’s planning on doing. Nothing ever catches Him out or is beyond his ability to sort.
But as this short, three chapter book comes to an end, Habakkuk simply says this –
Though the fig-tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the sheepfold and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Saviour. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights. (Habakkuk 3)
It’s really encouraged me, again. The preceding part of book is pretty stark – life will have hassle. Problems come, and problems can remain. The fig tree might not bud, money’s tight, health packs up, friends might let you or I down, dreams we’ve had may be lying in pieces at our feet – or at least they’ve never delivered what we hoped they would. The list can go on.
The world around us looks for ways of taking the problems away, but Father God so often allows that those problems stay and uses them to develop character in us and discover more gold in our relationship with Him. In fact, Jesus says,
‘I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.’ (John 16:33).
That’s a promise we can bank on because He, the Sovereign God, is so much bigger than anything we face. If we can hold onto Christ despite what is happening, Habakkuk describes that we can even be joyful in the face of sufferings and problems…the one who can know an inner strength from God despite what’s happening. We can do it because we know that with Christ in us…the best is yet to come.
From time to time, some people coming within our family circle find our use of graveyard or black humour quite bizarre, before they key into it and understand that it’s been an essential part of walking through these last two years; that facing all that’s happened with confidence, punctuated with agony, but facing it with Christ means that the very worse that life throws at any of us, is far in excess trumped by Him. So when one of our children, commenting on the blue disability parking badge, bus pass, motability and various government helps that have been offered, said, “Dad, having cancer’s great…you should have got it years ago!”, we all smiled.
Or when a friend asked me for some advice on some matter a couple of weeks ago, and I replied, straight faced, “Sorry, but I’m only dealing in end of life advice at the moment”, he looked perplexed, then after a moment smiled, “Oh, you and your humour!” We laughed.
But I’m so aware that it’s with a real degree of equanimity and peace that I continue to face it all. And as I quiz myself and ask ‘why?’, my only answer is that it’s almost entirely due to Christ and the effect of knowing Him. There was one point in His ministry where He’d just given some very hard teaching which made many among the much wider group of disciples and followers (apparently numbering into the hundreds) grumble and which even offended them. It’s described how many of them simply turned away and stopped following.
But that’s Jesus. He doesn’t shrink back from saying things we need to hear, from speaking truth to us, about both us and Himself that might offend us; he even at times brings things into our lives that might be uncomfortable, even painful. It’s all for our ultimate best, comfort, growth…and His glory. So easily though we want to domesticate and tame Him and turn Him into some kind of equivalent to a polite English gentleman and in doing so, create God in our own image.
But on that day when so many turned away from following, Jesus turned to the disciples and said,
“You do not want to leave too, do you?” Jesus asked the Twelve.
Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life. We have come to believe and to know that you are the Holy One of God.” (John 6)
I suppose that’s where I’ve found myself too over these times, and afresh in the face of the news about my brain tumours, the increase in signs of disease around my body and the time frames my oncologist has given. The thought that there are now these tumours apparently multiplying in my body’s control centre is something that I always thought would be a source of huge anxiety and fear. But it’s strangely not been – more like reflection, calm and peace. I guess it’s because I know nowhere – no, more than that – I know No-One else to whom I can go except the same Jesus who asked the disciples that question that day. I don’t feel myself to be inspirational – only just “one beggar showing another beggar where to find bread”. Like Simon Peter, there’s no one else I know to whom I can go. It all feels to me like a ‘no brainer’…here’s God come down, long predicted from 1000s of years before that He would come, born in human form, who walked our walk, who stood in our shoes, who took my place of punishment for all my muck and sin that separates me from knowing God and, in love for me and us, died in our place – a great exchange, God’s life for mine, for ours – died, dead. And then to prove He’s conquered it and sin’s consequence, rose again from beyond death to prove it and to ever live and reign, inviting us to hitch our wagon to His, to bind ourselves to Him through repentance and faith, to truly know Him then as we experience His Spirit come live in us, giving us a new life and way…and into eternity. Unique. No one else like Him. As Peter said,
“To whom shall we go? You have the words of eternal life.”
So it’s peace and joy for the believer. I can just nod my head in agreement with St Paul in the New Testament and say with him,
“To live is Christ, and to die is gain” Philippians 1:21
But as many will know, reading my writing over these two years, the rub comes though when I, as ever, see and think about Catherine, Simeon, Tom, Joshua, Lydia, Ma and Pa, my sisters, brother and ….well, the list ripples out to precious other family and friends. The timing jars with my human sensibilities. We cry together, we talk, we share pain. But I’ve also found myself getting to the point regularly where I’ve said to myself, to Catherine and each of the children, that if Jesus is good and great enough to have beaten death and is strong enough to carry me safely over the threshold into the wonderfully described eternity that the Bible details, then He’s good, great and strong enough to carry them. To carry them through the dark valley of Psalm 23 we’re all anticipating…but also back out again, implied in the use of the word ‘through’, into the light. It doesn’t mean they’ll be smiling and happy within a short time…they are going to need more love, practical care, nurture and support than I can imagine (and I mention it here deliberately)…it’ll be a major rebuilding, which even now I pray into, often with moist eyes. That it’s such a regular part of Catherine and my pillow talk, I can’t tell you. Agony and anguish seeking to lay its head down each night onto peace.
Last week’s five sessions of daily radiotherapy have brought that part of my treatment to a close. It was good going into it having had some re-assuring prayer times with both the guys from Grace Church one evening in the context of a living room communion and then a number of city church leaders who gathered in our garden with some anointing oil to again ‘lay on hands’ and pray for the effects of what could potentially do some damage. But arriving for my first session last Monday and then for the next four days, being screwed fast to the table, held down by my specially moulded head mask under the machine, was a strangely relaxing experience as the amazing machine using what is now a hundred year old X-ray technology (but a hundred times the strength and powered by the latest technology) passed around my head, irradiating my brain on both sides. The only sensations were bright lights coming at me (“Stay away from the bright lights”, good friend, Marc, commented later!) and then purple ones into my peripheral vision. It turns out that the purple is more likely to have been the effect of the X-ray on my optic nerve. It’s a strange thing to know that it’s acted inside my brain, but I felt nothing and still don’t, apart from a slightly red face and warm head. The fuller effect is expected to visit in the next few days and weeks as possible hair loss, discomfort, memory loss and difficulty concentrating. We now wait to see if the intended effect of it all – ‘re-setting’ the brain’s gatekeeping ability to keep the admittedly increasingly ineffective pembrolizumab/keytruda drug out – will work. My routine drug infusion continues every three weeks until it may get to the point where it’s plainly doing nothing. That decision and moment be a line in the sand, a bump in the road, we’re having to talk about, not knowing how that will feel. In the meantime, as James Grier arrived at the hospital for my last infusion ten days ago, I laid my hand on the drug line as James, Tim and I prayed that, if Father would cause it, it would prove to be an effective dose.
Meanwhile, so many have been regularly asking about Simeon and his broken pelvis after his motorbike accident. He’s doing pretty well, but remaining off his feet for eight weeks, getting bored and feeling cooped up in his – thankfully – single level, ground floor flat, with his motorbikes temptingly visible outside his window but frustratingly unable to be ridden. To help, hilariously he’s managed to buy a cheap mobility scooter to get down to the shops. He thinks it’s pretty fun and it’s given him some freedom…even though it’s something of a comedown from a fast 636cc Kawasaki road bike.
Such a gift it was to spend wonderful time with long term precious friends as Robyn & Peter Thew from NZ, Jo McNamara, Ben’s godmother from Australia came and then Rob and Di Shimwell – Rob, a former colleague – over a meal and evening. As wonderfully encouraging too and a proud time it was to watch Tom complete in the Cardiff Half Marathon on Sunday and then to help deliver Joshua over to Moorlands College near Christchurch in Dorset yesterday to start his degree in applied theology. Catherine, Lydia, Joshua and I had a special time of prayer on our bed the night before he left and committed him to the Lord as he steps into his next chapter of his life. Tim and Kathryn, staying here with us from NZ for the last four weeks, serving and assisting us so quietly and carefully, leave us this weekend and will be so missed. It’s been a gift having them share our home and journey.
My prayer for so many people I try to lift before Father each day has been shaped by words I read again recently from Paul in Ephesians, chapter one, that God would,
“…give you a Spirit of wisdom and revelation so that you may know Him better”
Seems a good way to pray for myself, for us, for others.
There’s a curious blend of increasing inertia and yet deepening quietness that’s coalescing inside me at the moment. On the one hand, I’m so conscious of numbers of important and mainly family related things that I’m needing to do, one by one. It’s partly and largely spurred on by the five consecutive days of radiotherapy starting next Monday, 26th September. I’m aware that my cognitive functions, including concentration and memory, will likely be effected by it. There may also be some collateral damage caused to the wider area as the beam can’t be focussed too narrowly…a point for prayer.
Consequently, a number of things lay at the front of my mind to sort.
But at the same time, aware that the cancer, particularly the tumours in my brain, seem to be progressing, I’m finding myself just more than ever, pressing into God – resting back into Christ – more and more “drawing deeper from the wells of salvation” and the resources He’s wonderfully provided for all who come to Him, remembering Jesus words, so familiar to so many…
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.
Last week, though, had some tough reckonings to deal with. On Wednesday, Simeon had a reasonably serious motorbike accident and broke his pelvis, as well as pretty much writing off his bike. He’s now out of hospital and back at his flat with good friends tending to him, but he’ll be incapacitated for 6-8 weeks. His beloved, reasonably new, bike was only insured third party, so he’s pretty devastated.
Then, the following day, I was measured up for the head mask/restraint that I’ll wear during the radiotherapy next week. While there, I managed to spend some time with Andy Goodman, my oncologist. It was one of those sessions where I needed to ask him some straight questions, and Andy, so helpfully and carefully sat with me. My main question was time. Now that the tumours have reached my brain, what, from his experience is the likely time left? His very gentle responses…with no radiotherapy, maybe three months. With radiotherapy hoping for palliative effects, six months. If, though, the radiotherapy has the effect of bump starting the brain into taking the pembrolizumab (aka keytruda) on board, who knows. But I got Andy to reconfirm that he’s seeing that the drug is showing signs of becoming less effective around my body, so it’s therefore unlikely to have any effects in my head.
I guess, from the previous week’s news, I knew it already, but the sobering nature of the specifics of the timings, hit me again. It was a somewhat surreal experience then to walk from the Oncology Department into the Trauma & Orthopaedic Ward to see Simeon – to walk into his situation with my information. Strangely though, his has proved to be a useful distraction to allow mine to slowly sink in.
That night, as Catherine arrived home from the sanctuary that school is for her, we sat and talked it all through. The tears for both of us flowed. And then, later in the evening, I rang my sweet sister Anna in New Zealand and, again, with emotions fully exposed, shared it with her. I needed her to go round to Ma and Pa’s to tell them face to face. Phone, FaceTime or Skype wouldn’t do. That was for the next day.
And so here…here I am. Here we are. I’m feeling – more or less – as well as ever. In a bizarre new twist, I’m going off to the local gym five days a week for an hour. It feels great for this one who, to quote my late best man, Nigel Clarke, in his speech at my wedding,
“At school, Jeremy had the most amazing ability to avoid any form of physical exertion whatsoever”
But all the while, I’m conscious – and more than ever – that I’m living with a reality that is drawing in. But in that reality there are possibilities that I don’t dismiss or ignore. Pressing into Christ, on those many promises He’s made to those who love and trust Him, provides Hope (capitalised deliberately) of the fullest kind. I’ve been stirred constantly by the Old Testament story of King Hezekiah from Isaiah 36 & 37. I won’t tell the whole story here (but if you click here you can read it) but suffice to say it tells of a major threat of disaster he, as King of Judah in Jerusalem, received from the marauding Assyrian emperor, Sennacherib. It’s initially verbal. But Hezekiah, after an initial grief reaction, tearing his clothes, seeks God, and receives through the prophet Isaiah, God’s stirring, strengthening response. By the time then a written threat arrives from Sennacherib, Hezekiah is calmed and ready. He walks into the temple, spreads the letter out before God and effectively says, “You, Lord Almighty are God, maker of everything, and over everything and are the only God, and God over all. See what this man is saying, insulting. You’re God, not him. Over to you” . St Paul writes that one of the reasons that Old Testament events were written down was that they were to serve as examples and warnings for us. And as the account of Hezekiah runs on, it’s spine tingling, and has provided me with such encouragement as to what God has done, what He can do, but more than that, who He is in the face of any danger, threat or loss for any of us. It’s not necessarily promising me deliverance from this cancer, but it is reminding me that something – Someone – else has the final word. And that Someone was the same One who stood in full glory after His resurrection from the dead and said,
“Do not be afraid. I am the First and the Last. I am the Living One; I was dead, and now look, I am alive for ever and ever! And I hold the keys of death and Hades.”
Of course, it’s the Lord Jesus Christ. The final Word.
As life moves along each day, He’s giving us a ‘normality’ and peace. It’s been great having Tim & Kathryn Handley with us from New Zealand, both here as journeying friends, and acting as my driver and our help around the home. We returned Tom to Cardiff for his final year last week and Lydia heads off to her college placement at a local children’s nursery each day. Joshua prepares to head off to Moorlands Bible College in a couple of weeks…do please read the new piece he’s written on the column alongside this one. It so encouraged me.
All the while, I find myself both drawn and drawing deeper, during the day (sometimes in the early morning hours, lying in bed) in prayer, in worship, seeking to deliberately “practise His presence”, as things move on.
“Peace I leave with you; my peace I give you”
And He is.
The news is not good and my mind is both a-whirr and awash with thoughts, feelings and emotions. I’m writing this in the wee, small hours of 9th September in our darkened bedroom.
Yesterday afternoon, Clare – one of the very supportive specialist nurses at the hospital – rang and asked if I could come into the Oncology Department at 4.15pm. My MRI head scan results were back. I sensed it wasn’t great.
So, taking our long-standing friends and former neighbours at college in Auckland, Tim and Kathryn Handley, currently staying with us, off I went.
Dr Goodman asked how I was. “Generally OK, but aware of fresh small lesions/tumours appearing under my skin on my upper body.”
“Well”, he replied, “I’m afraid I’ve not got good news”. He then went on to describe that my head scan late last week showed multiple tumours in the brain, and whilst generally in the left hand side, were somewhat spread out. It seems that the pembrolizumab (aka Keytruda) is having little or no effect chasing melanoma secondaries in the brain. He’s also concerned that the drug is showing signs of increased ineffectiveness in my body generally. It’s either holding things, or the melanoma is now advancing again.
He asked if I’d seen any signs of effects on the brain. No headaches or dizzy spells, but I guess I’d been aware of an instance a couple of weeks ago, talking with Catherine, of a strange speech episode where, mid sentence, I’d started making an elongated “uuuummmmmmm” and couldn’t produce any words. Then some ongoing, occasional inability to string a sentence together.
They’re all possible symptoms of something going on.
My clarifiying questions were many.
Apparently the brain is a very good gate-keeper and works hard to keep out infections, so good that it can also keep out the drugs like pembro that can help get rid of tumours like this.
As we talked, Dr Goodman was clear that we’ve now reached a particularly serious stage from which it is difficult to return. Medically, some small hope is offered by five short doses of radiotherapy to shrink the tumours.But because the tumours are relatively spread out, they can’t be targeted by a specific beam and so it’ll have to be general radiotherapy to the brain. This can have its own consequences in the form of possible memory loss and an increased inability to concentrate, something which could then further deteriorate with time. I’ll also lose my hair.The positive effect of the therapy is that it may “bump start” the brain into accepting the pembroblizumab/keytruda in. But, he emphasised, it’s only a slim chance this will happen.
I start the week after next, and for the next few days, I’m on a course of steroids as part of the procedure. He also told me that the presence of the tumours means I’m prevented from driving from this point on.
We’re left as a family, once again, rocked. Whilst news like this has always been a possibility, it’s news that we hoped nonetheless we wouldn’t hear. As Catherine and I gathered the children around the table when I got home (ironically 23 months to the day since my original diagnosis) and I walked everyone through the scenario, there were plenty of questions, but plenty of tears. “I hoped you all wouldn’t be facing this so soon after losing Ben”, I struggled to say. Together, we considered many things, both practical arrangements and then who is getting what support from where, at least for the next few days and weeks.
There’s no idea of time. I could suddenly deteriorate. The fact I haven’t had a seizure with the number of tumours present is a good sign, showing they’re currently in more low risk areas. But the fact that I’m now barred from driving shows the risk of further development is nonetheless high. But God. And His praying people.
Where do I go with all this and what do I feel? Internally for me, fresh anxieties and fears have surfaced – I’ve always felt particularly bothered about any of this ever affecting my brain. But once again, where countless others might currently want to say to me, “Where is your God?”, I find myself drawn back to the One who walked on the waters as Lord of all creation – and the One who now comes and walks on the waters of my troubles and fears. The One who alone has the words of eternal life. The One who returned from beyond death. And the One who is Life, even in the face of death. And so already, in the hours after this news, whilst I’m conscious of a big emotional tsunami rolling in, I can sense His promised peace. None of this I say glibly because “Well, he’s bound to…he’s a vicar-type”…no, I say it based on years of seeing the promises and power of His Word ring true through all the circumstances of life and then seeing Him at work in the most profound and life-changing ways in both my and others lives.
And so as I sit here writing this in our darkened bedroom, I’m encouraged as I read these words of Jesus spoken to His disciples who were about to face the most brutal persecutions and difficulties –
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” (John 16)
That encourages me as I face today. We’re going to face this a day at a time.
We sense we’ve got a dark valley ahead of us, but as Catherine and I lay on our bed together last evening, we joined in a brief prayer, “May we know you near us, Lord”
I’ve just arrived home for the second time today from the oncology department. Once for a clinic and once for my fifth infusion of pembrolizumab. It’s a world of which I used to know nothing, but is now such a regular part of my life that I can know and laugh with many of the staff, and many of the department patient routines feel so familiar to me. I saw Dr Ayman Nassar for the last time this morning in clinic before he moves away to take to up his new immunotherapy research post. It was good to be able to thank him for his expertise as well as his very particular care and companionship on this journey…he will be missed.
It’s been a quiet couple of months in terms of needing to post updates – something of a good sign with melanoma which, as many will know, can move with a rampancy and offer, as my oncologist said early on to me, a normal life expectancy of 8-10 months from diagnosis. To have been able to have celebrated my 50th birthday last month – something which 22 months ago was an impossible milestone to have considered – felt good.
This morning, I received the results from a PET scan I had last week. They contained both positives and some possible causes of concern. The radiologist summary report refers to “disease progression”. Some of the existing small tumours under my skin, whilst they haven’t grown, are showing some signs of fresh metabolic activity and there are also fresh small tumours – some I’ve been aware of on my torso – but all, it seems, are either just under the skin or in non-threatening places inside. There’s also a possible one in the bone of my skull for which an MRI scan has been ordered. Ayman assured me that it is a satisfactory result and one which falls within reasonable and expected parameters for response to pembrolizumab at this early stage in having it.
I think, having felt fresh lumps in the last little while, Catherine and I thought there might be some things for us to deal with. I think we realise that it’s always a possibility and it’s been freshly sobering. Then the death of Rachel Partridge, wife of my (until-recently) colleague Mike Partridge, two weeks ago had a similar effect and reminded us of what we’re facing. Both she with her leukaemia and me with my melanoma, jokingly referred to each other as “tumour buddies”…she was a special lady and one whose journey through her illness touched many people. She’ll be missed, not the least by Mike and their children – Felicity, Will, Ellie, Bethany and Hannah.
My reaction to the pembrolizumab, in terms of side effects, continues to be negligible. Apart from the now-not- so-regular bouts of extreme fatigue, a funnier one has been that it turned my hair curly with no warning and without it having to fall out. It caused no small amount of hilarity in the family, Catherine loved the new look. I’ve since had my hair cut very short, and that was only a few weeks after I lost my beard of 20 months also.
The lessening of the fatigue has allowed a month or so of fun in the family with the great summer weather. With it being my 50th, it was wonderful to have my parents and brother from NZ and Canada respectively there for it. Catherine and I were able to have a big joint 50th party at home with many old and local friends; Ma, Pa, Catherine (sometimes) and I were able to enjoy some great trips to Cornwall and London…but we also went sailing across Torbay and beyond with old friends Steve and Liz. We’ve watched Simeon ride in the off-road Enduro motocross event on his KTM motorbike, see Josh perform at a public event in Honiton as well as him and I go to the Goodwood Festival of Speed in West Sussex. I was able to accompany Tom to his placement in London at the Centre for Social Justice, as well as us spend time with old friends from the distant past either at home or away. Among some of our walks and visits, Catherine and I visited the National Trust’s Coleton Fishacre in south Devon, the old ‘Art Deco’ style home of the D’Oyly Carte family of the opera and Gilbert & Sullivan fame. We’d been there with the children twice many years ago and I had many clear memories. But it proved to be yet another unexpected ‘tripwire’ grief moment for me. It was a combination of discovering that the D’Oyly Cartes had lost their 21yr old son in 1932 in a road accident, and walking in the garden knowing it had been a place of huge grief and suddenly seeing places Ben had been and a spot where we’ve taken a family photograph in 2000 that saw me so utterly undone and tears for both of us flowing in a fresh wave. It was right…it had to happen, it was all part of the grief that’s working it’s way through, inside and out, round and about. I felt better for it. But there’s no time limit to it and to when it can strike.
In those times over the last few months when I don’t find prayer comes too easily – either through my own lack of words, I’m grateful for the daily “Bible-in-a-Year” reading app on my phone which can take me to a place where I see not only the utterly amazing characteristics of God – each day with a psalm, an Old Testament and a New Testament reading, I can see His holiness, His faithfulness, His love – that I can pause and use them in even a brief prayer back to Him in thanks, or a time of quiet worship for who He continues to be there for me, for us, no matter what I might see.
I continue to “wrap up” those things – people or situations where we long to see change – within the character and promises of God. I had a fresh reminder about it last Sunday at church when Mick Taylor from Citygate Church in Bournemouth (listen to the whole thing here) helped us consider Abraham in Genesis 18 as a pattern of how we can do that. We considered particularly when God shares with Abraham that he is planning on destroying the appalling wicked cities of Sodom and Gomorrah. God was under no obligation to tell Abraham about this, but He appears to do so to prompt Abraham to engage with Him. Abraham hesitatingly, yet boldly requests God to consider not destroying it if he finds 50 righteous people there, and Abraham concludes his request saying, “Will not the judge of all the earth do right?” In other words, Abraham was appealing to God’s own righteous and good character to do what is right. And God agrees with him to relent if he finds 50. But Abraham boldly pushes on to 45, 30, 20, 10 people in the cities. It’s about a degree of boldness and taking seriously what we come to understand of God’s character as we read of it in action in the Bible. So, for us today, an example might be for us praying for a friend, family member, or a former church member, who has walked away from God for whatever reason. We can (knowing the Lord Jesus Christ who describes himself in the New Testament as the good shepherd and who leaves the ninety-nine sheep and goes in search of the missing one) wrap up your concern for the person or situation in the character and promise of God and bring it to Him in prayer. “Lord, I can’t easily bring them back, but you, good shepherd, have promised to do just that. Please Lord, go after him/her… please do that”
“Will not the the Judge of the earth do right?”
…I have continued to use that line over the last year or two as I pray regarding this disease in my body and where it might lead, considering Catherine, my children, my parents. Trouble is, we don’t always know what ‘right’ is. Sometimes it’s “Yes”, sometimes “no’, sometimes “wait”. But whatever, I remain peaceful in my situation for whatever outcome. If Christ can have beaten our ultimate enemy – death – and can usher me into His wonderful eternity, He is more than strong enough to look after and meet with my precious ones left behind me. But I pray on, sensing to remain for the time being might be best…
Whilst staying in a friend’s home recently, right outside the bedroom door hung an old barometer on the wall. It’s now just a couple of days on from my second infusion of pembrolizumab, and I find myself thinking that if life and wellbeing could be measured on a similar kind of instrument, this last month would have seen the dial spinning around pretty wildly. These last two weeks have seen huge joy as we were able to spend time with many old friends as we revisited our former home in Upton on the Wirral. Then Tom has just passed his driving test. Fantastic. But at the opposite side of the dial, within six days of my first dose of pembrolizumab less than a month ago, I carted myself back into the oncology department feeling terrible. Feverish. Night sweats. Extreme bouts of fatigue which kept stopping me in my tracks, reminiscent of the Duracell bunny advert. I was tested and examined and told that everything was within usual parameters of possible side effects. Reassured. But all the symptoms, apart from the fever-like feeling, have continued and are now joined by aching legs that continue to awaken me throughout the night. But worst of all, my tumours – particularly the one on my neck – suddenly grew within days of the first dose, possibly because of the previous drug being withdrawn and pembrolizumab taking time to settle in. The response it elicited within me, Catherine and the family was one of mild alarm. All the brakes seemed to be off and we were starting to career, out of control it felt, down the hill.
Remarkably, however, in the last ten days, the tumours – particularly the one on my neck – have now suddenly reduced in size in the most amazing way. You’ll see from the two comparative photos. I know pembrolizumab has had some significant results worldwide, but even Ayman is impressed at the speed of response seen in this tumour. Then I also remember the army of thousands around the world who’ve picked up my story and have said they’re remembering me before my faithful saviour, Jesus.
As I’ve been reflecting on the whole thing, especially when my neck tumour swelled so enormously, something struck me. Precisely where the tumour is, I used to wear (albeit irregularly and sometimes uncomfortably, preferring the more informal look) my vicar’s clerical ‘dog’ collar – a sign, a mark, a symbol of a particular kind of ministry in many Christian denominations.
In a curious way, it seems that the tumour is a kind of strange badge of a new ministry into which Father God has called me and Catherine as we share our story with others. That in God’s different economy of things, rather than it being a ministry ‘limiter’, this cancer – and even losing Ben, as utterly painful as that continues to be – has opened up a whole vast array of opportunities to both know and testify to God’s amazing grace, His timeless enduring promises, the profound hope and strength He gives through Christ when the night seems at its darkest and the days can seem utterly devoid of light. That when the world around us celebrates wealth and power, strength, confidence and health, God’s different – even strange – economy turns all that on its head and whispers in a still, small voice and through the pages of the Bible, that real prosperity, peace, security, purpose and hope are found somewhere else – through knowing Christ. And that difficult, dark seasons can perversely provide space and opportunity to know and rely on Him in even deeper ways. As I was reflecting on it, I thought of Bible characters Jacob & Paul. Jacob was the grandson of Abraham and son of Isaac. He was a sheer deceiver. Cheated his brother. Lied to his Father. A stealing schemer. Yet one night, as he was sleeping alone by the river Jabbok, resting during another of his schemes, Genesis 32 records a strange incident where he finds himself wrestling with ‘a man’ through the night. As the story unfolds, it’s clear he’s wrestling with God himself, something he’s metaphorically been doing all his life. The fight lasts into the dawn and when his unearthly opponent, unable – deliberately perhaps – to overcome Jacob, touches his hip, it leaves Jacob with a limp for the rest of his life. But it’s a moment of inner change for Jacob, and he’s given a new name – Israel – and his life from that point is on a different trajectory with a new priority which although imperfect, was symbolised by his hip and limp. In God’s different economy, the dislocated hip rather than failure and loss, represents a new ‘ministry’, new-found strength through weakness, of knowing God and reliance on Him.
Then Paul. At one point, the great apostle taking the message of new life in Jesus Christ with such a profound effect, spear-heading the spread of the gospel into the known world, is inflicted by what he refers to as ‘a thorn in my flesh, a messenger of Satan, to torment me.’ It’s not at all clear what exactly it was. But three times he pleads with the Lord to take it away from him. And God’s response?
‘My grace is sufficient for you, for my power is made perfect in weakness.’ (2 Corinthians 12)
Rather than it becoming a hindrance to Paul, it seems to become for him a reason for thanksgiving, a badge, a sign of his ministry, a way through which he knows Christ, something which he even embraces as he falls back in reliance on Christ’s strength and power more than ever. It emphasised to Paul the unmeasurable depth of resource and strength available to him, to us, through God’s powerful grace – his unmerited riches and favour – there for even the simplest and weakest believer. That in God’s different economy, those things we might at all costs want to avoid, to run from – weakness, powerlessness, illness, exposure, even an unravelling life – can be precisely the ways and means God sometimes – often even – uses to introduce us to His higher ways and incomparable riches, the things He uses for our blessing and benefit as well as ways we can testify to the power of Christ in us to others, realising we all live through painful, sad and difficult seasons. That suffering can be a springboard. That suffering can be redeemed, that dirt can be transformed into diamonds. Whilst it’s true that He might not have caused whatever dark situation we’re living with – I don’t necessarily attribute my cancer to Him – He can nonetheless use them for our benefit and His glory. God’s different economy.
The verse from the old hymn which contains the line that gives my blog its title says…
” O joy that seekest me through pain
I cannot close my heart to Thee
I trace the rainbow through the rain
And feel the promise is not vain
That morn shall tearless be”
In God’s different and ‘strange’ economy, both pain and loss, weakness and illness, suffering and hardship are not the end of the story for the one who’s made Christ – God’s way home for us – their treasure. That through His suffering, Christ entered into our suffering. Because of Christ’s taking on human flesh and His death – God’s incarnation and slaughter as the sacrificial lamb in our place to entirely cover and atone for all our muck and offence – and because of His resurrection from the dead – God’s stamp of approval that full satisfaction for our offences had been provided, that He’d conquered it and that therefore death could not hold Him (or anyone trusting in him) down – because of these enormously precious things, there is a ‘morn’ coming that ‘shall tearless be’ for all who’ve clothed themselves in Christ, made Christ their treasure, who’ve placed the weight of their life’s trust on Him. There’s an eternal morning coming when all tears shed in life – tears because of hardship following Christ, but also tears shed because of the effects of living in a broken, sin-scarred world where loss and heartache exist – those tears will be wiped away by God Himself. And our eyes will, on that morn, become firstly unclouded then opened to see the inheritance, the place He’s prepared for us. And we’ll see Him, still with the wounds in His hands, in His feet and side, standing in front of us, face to face. It’ll all be well. So well. It’ll all be worth the wait. Worth the pain.
To quote Ben from his one entry here on the blog…
“However, I realise that, one day, I will see (Dad) in Glory and together we will celebrate what we have gained through Christ. Bless the Lord, my soul cries out! The good news is that if you’re reading this and you know the Treasure that is Christ, you can have the same confidence”
Writing from my treatment chair in oncology two days ago…
There’s a strange feeling of déjà vu and a bittersweet familiarity with what is happening today. Sixteen months on from when I was last here, once again I’m connected to a drip receiving a fresh round of immunotherapy, this time the very new pembrolizumab which last December was made famous for its remarkable effect on former US President Jimmy Carter, also diagnosed with advanced melanoma (click here to read a brief article about his situation).
Once again, I’m plugged into this surreal world of the oncology treatment ward where seeming normality coalesces with the utter foreign-ness of it, where calm is sometimes a thin veneer for an anxiety that’s gripped an individual and then swept through family and friends collectively and where cheerfulness rubs alongside all the ‘ifs’ and ‘buts’ that the mind trips around in an attempt to cope with ‘today’.
This armchair I’m sitting in, the chairs we all sit in around the amazing Cherrybrook ward, contain unique people each with a story of life interrupted, overtaken by a diagnosis they perhaps always thought was going to be someone else’s news, not theirs. I walk through the ward and its various bays to my own bay and chair, past some who’re plainly unwell, and still others who look as any other person you might see in the street. But here we all are. All on the level. All touched by cancer. It’s wonderful having a great team of nurses who laugh, joke and talk as if we’re all sitting on a bus going on holiday together. It’s also been good today to share the journey with a younger woman sitting near me who has a similar story to mine, also living with melanoma, and like me, had her first brush with it twelve years before (I’m told this is a very common period – 12 years on, and then melanoma comes out of hiding) and now on the same drug therapy as me. Having had four doses already, she’s a real encouragement saying how easy the pembrolizumab treatment has been both in terms of side effects and the flexibility of time between doses. But unlike last year’s four 2hr sessions for ipilumumab, this drug only needs a short 30-45 minute infusion each session. It’s hardly time to put my feet up and relax.
Ricocheting around my mind though is the news Ayman gave me on Thursday that he’s leaving the hospital to take up another appointment in immunotherapy research. In so many ways, it’s not a surprise as his interest in it and the science behind it is clear. He’s plainly got a lot to offer in the ongoing development of this breakthrough therapy for the various types of cancer which, until recently, had no significant treatment. But I’ll miss him because as my regular doctor in the Exeter Oncology Department, he’s been a real rock, seemingly always nearby or on the end of the phone to answer questions, to clarify things, to reassure…and to make it all feel quite everyday. My visits to both the clinic and ward won’t now be the same without him in the times to come.
48hrs on….Sunday afternoon
Yesterday, Catherine and I meandered down to Devon’s south coast, to beautiful Salcombe and the gardens of the National Trust’s Overbeck’s. Apart from feeling pretty unwell while there and wondering if this was the result of either dabrafenib’s withdrawal or pembrolizumab’s entry, we had a good time out enjoying rural Devon, always incomparable on a good spring day.
But our reactions to my seedy state both in Salcombe and during the night, combined with periods of fatigue, indicate that our internal radars are on heightened alert as the new drug settles in and either helps produce an effect or has none. This state of alert can in itself be tiring. But it’s complicated by some tough things we’re facing with our young ones and decisions they face. The ongoing effects of grief for them and the anticipation of either what is or isn’t round the corner, is hard.
At the same time, I found particular fresh encouragement in words of Jesus in the Bible that stirred me the other day…
“On the last and greatest day of the festival, Jesus stood and said in a loud voice, ‘Let anyone who is thirsty come to me and drink. Whoever believes in me, as Scripture has said, rivers of living water will flow from within them’. By this he meant the Spirit, whom those who believed in him were later to receive” (John 7)
It’s an invitation to come and know the unparalleled, the matchless presence, strength and comfort of God found uniquely in Christ Jesus. If He’s saying nothing else here, He’s saying that He alone is the source and author of life, the one who, when I come to Him, stick close with Him, gives true satisfaction and meaning to life. Drinking from anywhere else won’t satisfy or save. This One is the incomparable best and we can walk in His wake, safe and secure. I found myself doing just that as I lay awake in the night, unable to sleep for some discomfort, tuning in with Him again.
As I sat outside on Saturday in the early morning sun, coffee in hand, the invitation I’d read from John’s gospel a few days earlier was quietly reiterated in a different way as I read from the Psalms words of King David, written 3000 years ago…
Hear my cry, O God;
listen to my prayer.
From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.
For you have been my refuge,
a strong tower against the foe.
I long to dwell in your tent for ever
and take refuge in the shelter of your wings. (Psalm 61)
They’re words I remember impacting me as a 20 year old. They impacted me afresh this weekend and I made them my own. They’re words we can all use.
As a child, I used to love having fun in our garden with my magnifying glass, focussing the sun’s rays on all sorts of things – dry leaves, fire crackers, patches of grass – and watching the sometimes fiery effect. Drawing all that light and heat, directing it onto one spot, was enormous fun for a curious, if not somewhat mischievous, ten year old boy.
Whilst last Thursday wasn’t what I would call great fun, it was a day that did see us at times smiling and laughing. But it was a day that felt like lots of events were being focussed into a magnifying glass and concentrated into one place, one day. As well as it being the first anniversary of Ben’s death, it was Joshua’s 19th birthday and the day for receiving results from my latest PET scan of the previous week. Time gently propelled us from one event to another through the day. A walk mid-morning near Broadclyst with my parents-in-law to the spot where, on the 27th December 2014, Ben suffered the seizure that led to his four month hospitalisation, was followed by a family pub lunch. Onwards then we went, in the early afternoon, to the hospital for my results followed by a visit to Mardon House, Ben’s home for his last 3 months, to leave some memorial flowers. Lyn, Bernard and the staff welcomed us so warmly and as we sat over a cup of tea with them, so many recalled how special Ben had become to them while he was there and how they still remembered him so fondly. We were able to spend a few quiet moments alone in his old room at Mardon – and in the space where he breathed his last breath – and let some tears fall.
After a visit to his grave to lay flowers, we managed to affect a change of gear and the day concluded with a good evening around the meal table with some close friends of Joshua joining us to celebrate his special day.
At the end of it all, we were tired, somewhat relieved, but thankful to Father for the way we’d been held. We felt the day had been marked suitably and that we’d done well. The fact that my scan results were generally positive helped matters enormously for us all. Using the very obvious tumour on my neck as a ‘marker’, it seems that there was an initial general shrinkage in most tumours in response to the Dabrafenib capsules over the weeks since February, but now the drug has started to loose its effect and there’s been an expansion again over the last two or three weeks. The result is that they all appear to be increasing again to their original sizes. Consequently, the scan showed everything more or less as it was on the previous one in January. The good news however is that there’s no evidence of anything new, and what tumours there are don’t currently appear in any life-threatening places. I’m now scheduled to start my new immunotherapy treatment on Friday 13th May. Although the new three weekly infusion of Pembrolizumab will mean careful event scheduling in our family diary – time away, holidays etc – I certainly won’t miss the current twice daily timetable of swallowing capsules as it’s limited when I could and couldn’t eat.
Ten days ago, Catherine and I were able to attend a day in Worcester for bereaved parents organised by the superb UK Christian charity, Care for the Family. It was a heartening experience to be sitting together with others, all of whom were parents who’d lost a child – some in childhood, some as adults, some specifically to suicide. Sharing together in our smaller groups through the day, there was an unspoken understanding from all to each of the journey we’re together on. As Mike and Kath Coulson, leaders of Care for the Family’s Bereaved Parent Support spoke, they helpfully named something we’ve experienced both since my diagnosis and Ben’s death – hurdles and tripwires. The hurdles are the events you can plan for – anniversaries, Christmas, birthdays – times you know are coming and which you know will probably be difficult, but strangely can be relatively alright as you’ve braced for them. It’s the tripwires however you can’t plan for…they’re the problem. They’re the ones you can’t anticipate. A smell. A sight. A piece of music. A place. A word. And suddenly a strong memory appears and grief just catches you out again. For Catherine a few weeks ago, it was seeing a small boy wearing dungarees. She remembered four small Clark boys, including Ben, wearing them. She was so unexpectedly tripped up. And no one would necessarily know.
We’re looking forward to the continuing get-togethers with these precious folk…it was so timely ahead of last Thursday’s anniversary. As we returned home to Devon that evening, we called in – invited – to Sam and Kirsty’s wedding reception in Nailsea. Sam had been one of Ben’s best men, and Ben would have been one of Sam’s. It was so great to be there to see them both. Sam had been such a loyal, close friend over many years. But I had to catch myself and swallow hard at one point as I saw a few of Ben’s old friends – many now married – and thought, “Ben and Dabi should have been here today. Why, Lord, why?” As I’m writing this now, my jaw is clamping and tears are forming. Tripwire moments. And if it’s me, it’a also numerous others in their losses…especially I think of the number of lovely people we met last Sunday when we spoke at Christ Church, Woodbury who’d lost children. It was a privilege to have them share with us afterwards and know a quiet understanding between us. But I also think of special family friend Carol, whose husband Neville, my godfather, died suddenly very recently. I particularly remember conversations out over coffee with him on my visits back to New Zealand over the years. I shall miss him.
As Catherine and I sat with our good friends Matt and Louise Wilcox over breakfast last Saturday morning, having had them stay over with us the night before, we all read from the second chapter of John’s gospel in the Bible the account of Jesus at a wedding in Cana where he turned water into wine. As we pondered it, Matt remarked how noticeable it was that Mary, Jesus’ mother, when they ran out of wine, simply turned to him and said, “They have no more wine”. After what seems like a rebuff from her son in response, she quietly turns to the servants and says, “Do whatever he tells you”. And what follows is a sign that points to His identity.
But why the initial word from her to Jesus? Matt helpfully highlighted the sense in which it seems Mary knew. She knew whatever the situation, Jesus was bigger than it. For a couple getting married, Jesus saved them from the social shame and stigma within their culture of a ruined wedding party. But more than that, there’s no situation, no loss, no lack, no grief, no nothing that ever catches Him out and leaves Him incapable to help, to be alongside us even when it seems to be in the darkest place, to give solace, hope, to transform, to forgive, to renew, to be what we need Him – Emmanuel, God with us – to be.
He’s our continuing strength – our life.
Remembering our precious Ben – husband, son, brother, grandson, God son, cousin, nephew and friend – who stepped into eternity a year ago today. No words can truly describe how we feel. But along with a deep and ongoing sense of loss, we feel an immeasurable gratitude for him, what he showed us and what he inspired in us.
Benjamin James Clark
“For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:38-39
The memory is such a powerful thing, with both unfathomable depths and an ability to take us back especially if its connected via an emotion or music to moments in time both precious and painful. As I write, I’m on a train listening to Bach’s St Matthew Passion and Beethoven’s ‘Kyrie’ from his magnum “Missa Solemnis’, both profoundly sublime and powerful works. They immediately transport me back to my late teenage years, to my time as part of the Royal Christchurch Musical Society choir, when we performed them with the Christchurch Symphony Orchestra conducted by Bob Field-Dodgson. Also my music master at Christ’s College, he was a man who had a profound influence on me, and through his mentoring and music unknowingly prepared the ground for a growing encounter with Christ only a short time later. But listening now to these works re-connects me and takes me on a journey into the heart where I find a wistfulness for those times, but a deep sense of gratitude for them at the same time nonetheless. The train I’m on is heading to Manchester and onwards into the Peak District to spend a few days with Rob and Di Shimwell. Rob was my senior colleague from the late 1990s at St Mary’s Upton on the Wirral. My memories of the years spent working with them are equally significant because of the influence they had on my life. From them I understood both the challenge of avoiding superficiality in my ministry and the all-sufficiency of the all-surpassing and boundless work of Christ for the depths of our situations and lives, of the importance of addressing Him to the places in the heart, mind and will from where we make our decisions and live our lives. But they also encouraged me in my ministry to know where to stop and let the Holy Spirit take over – that He is the ‘deal clincher’ and only He could ultimately cause people to drink from Christ’s well. Only He also could do the ultimate work in the hearts, minds and lives of those to whom I was ministering whether through preaching or pastoral work. I’m so thankful for the Shimwells.
My visit to them follows a 50th anniversary celebration ten days ago at the church Catherine and I were a part of in the late 1980s/ early 90s in Hawkwell, Essex. Its then rector Tony Higton, and his wife Patricia with the church family, gave us a great vision as to what a New Testament church could be like. Returning after so many years was both wonderful and strange, taking me back in my mind to a kind of age of ‘Eden’ when it was just newly wedded Catherine and me, before the particular joys and usual struggles of parenthood, but also the pain of loss. It was grand to connect with so many precious old friends.
But the memories are heightened in another way at the moment as we approach the first anniversary of Ben’s death on Thursday next week. We meet it with such a mixture of feelings. His headstone was finally installed two weeks ago after some weeks of planning and design. It marked the end of the formalities and signals a new phase of settling into the calm depths of loss, with its sometimes warm, sometimes cold currents. The anniversary for us as a couple looms with a heaviness. For each of us, for all us, there are different reasons. Perhaps hard to describe, I find myself with a temptation to guilt that Ben, whilst he’s always at the very forefront of our minds, no longer features in our practical plans and everyday considerations as a family and won’t ever again, that we’re moving on to fill in gaps, that he doesn’t feature when I sign cards or letters from the family…it’s now just “Jeremy, Catherine, Simeon, Thomas, Joshua and Lydia”. It’s less painful to just say “from us all”. As with the year rounding from 2015 into 2016, I think the most painful part is to feel that he therefore slips further away from us as the first anniversary approaches…the photos hold him in time, but time itself is moving so inexorably on.
But then hope’s whisper is heard. We had inscribed on Ben’s headstone words of Jesus from John’s gospel that I spoke at his burial, words that remind us that what might seem like ‘lost’ is simply, because of Ben’s faith in Christ, lost for the time, from sight. As Jesus uttered them, he finished with a simple but profound question –
“I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?”
We can stand there and, even through tears, say, ’Yes’.
But as we live with grief, I realise the importance of something that has been largely lost to the church…the place of lament. So quickly do we want to rush into fixing painful things, praying for light and victory, affirming (often with a lot of truth to back it all up) what’s true for the present and the future, that we miss the moment, the seasons when God meets us in the darkness. Over the last few months, we’ve sat with friends pained by infertility, others having lost a precious spouse, still others facing terminal illnesses. While of course there’s a place for words, particularly prayers of comfort and help, there’s also more than a valuable place for times of silence, of wordlessness. Old Testament Job’s friends were arguably at their best when they sat in silence with him regarding his tragic situation for seven days. It’s only as they opened their mouths and started to speak that they laid themselves open to God’s ultimate rebuke, despite often sound theology on their part. But where words can be used, there’s the place for the shaking a fist in the way the writer of Psalms sometimes did. There I can find a wide range of emotions used that allow us to express, in those times of hardship and suffering, our own desolate feelings, a place that provides words to my complaints and questions to the Lord. Psalm 13 powerfully expresses so much for me…
“How long, Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts and day after day have sorrow in my heart?”
I hold onto the fact that, more often that not, my encounters with God in the dark places have ultimately produced more fruit in my life than when the sun is always shining and the sky always blue.
And so we’ve continued to walk on. Catherine and I have had some particularly special times in recent weeks speaking, recounting our story publicly with the church families at Riverside Church and St Thomas’ Baptist in Exeter, then just last weekend at Silverton Evangelical Church north of the city. As it seems to minister to people, sometimes through our tears, so the Lord also seems to encourage us as we recount the pain but also His constancy, even with the unanswered questions of these last eighteen months.
But we walk on into what seem to be fresh challenges for me health wise. The cancer is plainly on the move again. The Dabrafenib medication I previously described has been very effective in shrinking the newer tumours on my neck and upper body. And news that the original tumour on my lung has now shrunk so significantly as a result of last year’s Ipilimumab treatment and that it’s being described as effectively inactive, have been so encouraging. But in the last two weeks, the tumour on my neck has started to increase by small degrees again. It’s no surprise in many ways as the Dabrafenib is known to be effective only for a few months. I’m booked in for a fresh PET scan this Friday, and see “Dr Optimistic and Encouraging” (aka Ayman Nassar) on the day of Ben’s anniversary next week for results. He’s expecting to start my previously delayed Pembrolizimab treatment in May. All this of course starts to ramp up the tension levels in the family. Last week, when with friends, I felt Catherine’s hand quietly reach out for mine. I knew what was going on. Growing tension. No need even to turn my head. There was a quiet understanding.
In the meantime though, I’m feeling as well as ever and it was great to celebrate Catherine’s 50th birthday last week and I look forward to joining her in age on Bastille Day.
As ever, we covet your prayer, and thank you so much for it.
“Grace and peace to you from God our Father and the Lord Jesus Christ be with you all.”
Just when we were expecting one thing last Friday at the hospital, it all changed. Having arrived for my “check in” appointment, necessary for the medical team to both see that I was in good condition for treatment and for placing the drug order with the hospital pharmacy, I settled myself down in the FORCE cancer charity’s comfortable lounge for a couple of hours ahead of my first infusion of pembrolizimab. But within an hour, my phone rang.
“Mr Clark, we’re so sorry, but there’s been a problem with the finances surrounding your treatment today. There’s nothing too major, but could you possibly come back to Oncology and we’ll explain more.”
So, back I went, wondering what could have suddenly happened just an hour or so ahead of my treatment.
Soon all become clear. Evidently, one of the pharmacy team picked up on government regulations that state if an individual has been treated with ipilimumab as a first line treatment (as I have been), then they can’t be treated with pembrolizimab directly after (or as a ‘second line) unless the local hospital pays for it. Another drug has to be used first. If that drug proves to be ineffective in stemming the tide, or causes ongoing or bad side effects, then pembro can be deployed as a ‘third line’. My oncology team’s frustration at the system was palpable…plainly, as pembro is such a new drug, there’d been no earlier opportunity for them to discover this.
So….I’m now officially not just an immunotherapy patient, but a chemotherapy one also as I’ve been placed on a cancer drug known as a BRAF inhibitor. Simple to take – just two tablets twice a day – dabrafenib is designed for use in metastatic melanoma to inhibit or switch off the faulty signal from the BRAF protein within the cancer cells, so preventing the cells from proliferating. But it’s generally only effective for a few months, so it’s pretty clear that, all things being equal, I’ll eventually be put onto pembro. With this new chemo drug, there’s the risk of some side effects (including fresh skin cancer) but all of them only affect slightly more than one in ten people. Since starting it on Friday, I’ve had a somewhat ‘heady’ weekend as it’s been kicking in, causing my skull to feel like it’s pulsating and with a mild headache to boot. Despite it, we had a relaxing weekend away near Chichester staying with Catherine’s brother James, our sister-in-law Annabel and their family, and speaking at their church on Sunday night. It was a real privilege to share – even through tears – our story with them and once again it was encouraging to see God using it to connect with people at various points.
In one sense, although it’s a change of treatment and a change of pace, in another way, it’s business as usual but with some added pit stops and additional checks along the way. But along the path, I see God at work in and around us. As I waited at the hospital on Friday, I thought about a recent conversation I had in the barber’s shop. I’d never met Tess before, but as she cut my hair, we talked and the inevitable questions of life and what I was did came up. I figure, at times like this, I can either shrug the question off with a lame “life’s fine, thanks”, or I can see it as a door opening in front of me to walk through and talk about the things that really matter in life, to share with a fellow traveller who lives with the same hopes, fears, and unanswered questions anybody else does, something of our journey, and to point to where hope can be found. She stood, listening quietly, continuing to cut as I told the story of the last twelve months. Then she paused and asked, ‘So with all that, does it make you ever doubt your faith?’ Strangely, again at the hospital this last Friday, one of the medical assistants and I were chatting about my situation. She then asked the same question.
I’m so aware that both these two people gave voice to a question that many others hearing our story have wondered about. And it’s a very natural one because it raises all sorts of questions about God, where He is, why He lets things like this happen, what can we reasonably expect from Him and chiefly perhaps, is there even a ‘god’ at all if things like this happen?
So how do I answer? I need to look back. Right from childhood, I’ve had a ‘sense’ of God. Only when into my adulthood, did I understand that this is likely to have been there because, as the Old Testament book of Ecclesiastes puts it, God “has also set eternity in the human heart”…in other words, that He has given each of us, all of us – even the most avowed atheist or humanist – a sense of there being ‘something more’. It’s something that’s been planted deep, deep inside of us all. It’s just that for some, it gets overlaid with all sorts of other things and it’s drowned out.
Still looking back, then when I was in my early twenties, and through a strange set of circumstances, I came to know God in a personal way as I was shown and introduced to Jesus Christ as I’d never been before. My life and priorities were turned on their head, so impressed and taken was I with Him.
So, for me now, living and continuing to face circumstances like this, does it threaten to drown that early sense of God and of the eternal? Does it challenge the faith that then became personal and real from my twenties’?
Well, if my faith was based on feelings, I suppose I’d be something of a wreck by now. Feelings are so fickle, so fleeting, so affected by circumstances, and can spin round like a weather vane. But right from when I first started to organise my life around Jesus, when I first came to really know him in that personal way those thirty years ago, I was and have been so struck how the Christian message is one founded on facts. I think of Dr Luke, writer of the gospel named after him in the New Testament, who states carefully at the beginning of his book,
“Inasmuch as many have undertaken to compile a narrative of the things that have been accomplished among us, just as those who from the beginning were eyewitnesses and ministers of the word have delivered them to us, it seemed good to me also, having followed all things closely for some time past, to write an orderly account for you, most excellent Theophilus, that you may have certainty concerning the things you have been taught.”
There’s more than a hint of some careful investigation that’s gone on. He’s been seeking to deal only with what’s actually happened. I see the interesting use of the word ‘certainty’…it’s not a popular concept when talking about matters of faith these days.
Along with this, there’s the old question that was asked of me years ago by a family friend bothered that I was getting a ‘bit keen’. “But Jeremy, you can’t believe everything you read”. The context of the conversation was one about the reliability of the bible. It was a question again of facts. Some say that as it’s 2000 years since the events, there’s been so much opportunity for the written words to have been changed, to say nothing of all the changes that might have taken place – the ‘Chinese Whisper’ effect – while it was still being passed down by word of mouth before being actually written down.
That objection doesn’t take into account at least two things of importance.
Firstly, within cultures where the oral tradition was central, the accurate passing on of the stories and sayings from one village and generation to another, was vital. It was unthinkable that they should be changed. We can perhaps insult these cultures with our modern view on how information is transmitted reliably.
Secondly, it doesn’t take into account the vast amount of paper evidence we have of the unaltered words in scripture. The fact that we have an almost embarrassing wealth of ancient manuscripts – copies of the original writings – for the whole of the New Testament from a relatively short time (between 130-350 years) after it was originally written….much, much more than we have for most of the main texts on which we base our knowledge of the ancient world. No classical scholar would doubt the authenticity of Herodotus, Thucydides, Tacitus or Livy when studying ancient Rome or Greece, yet the earliest copy we have from any of them was written 900 years after the original and with many, many, many fewer manuscripts than we have of the New Testament.
The text has remained largely unchanged. Where there are changes or there’s an uncertain translation, it’s over very minor points and these uncertainties are all acknowledged in the footnotes of our modern translations – no-one’s trying to hide anything. It shows that, contrary to popular thought, the church, its councils, or various individuals with a barrow to push, have not altered it, added to it or changed it to suit whatever purpose they might have had.
Then there’s the reality of changed lives. I often think of the disciples, a rag-tag bunch of fisherman and other sometimes dubious professions of the day. They all fled for their lives at the first hint of trouble when Jesus was arrested. And the one who remained nearby then denied knowing him at the first opportunity. What accounted for their subsequent transformation? What caused them to metamorphose into a posse of individuals who would together and one-by-one be responsible for changing the known world, prepared to face being disowned, abuse, beatings, persecution, imprisonment and death? Something startling in the very least. That ‘something’ is asserted to be the resurrection of Jesus Christ from beyond the grave. Some have claimed the disciples just stole his body and made up the rest. But (apart from the near impossibility of sneaking past a pair of Roman guards on the tomb) would you die for something you knew to be a lie? Some have asserted the Jewish leaders took the body to prevent any stories of a resurrection that Jesus himself had predicted. If this was the case, why then didn’t they produce the body when the disciples started claiming a resurrection had happened? Some have said it was a mass hallucination…they just thought they saw him because they so desperately wanted to. But these guys were robust fishermen and tax collectors. Added to that, Thomas won the prize for doubt…and even he was then finally convinced. As well, the gospels describe how over 500 people on eleven different occasions saw Christ, over a period of forty days. And on one of those occasions, He cooked and served a fish breakfast. Figments of our imaginations or ghosts don’t cook breakfast. Hallucination is a difficult claim to maintain.
And then there’s the evidence of countless millions of ordinary people over two thousand years who’ve had their lives transformed, having believed on Jesus Christ, his death and resurrection, many set free from the most appalling backgrounds.
Doubts about Lord Lucan’s life and death might continue to circulate for a very long time, but there’s no doubt in my mind about Lord Jesus.
And if Christ did rise from the dead, it changes everything for everyone, both those who consider themselves ‘religious’ * and those who don’t. Death, the one thing that humankind has never been able to beat, conquer or avoid, Jesus came back from beyond its gates. No one else has done that. No prophet, teacher, sage or wise guy. And if he came back as one who’d conquered it, having said he was the way through it, then none of us can afford to either ignore him or even remain apathetic towards him. We leave ourselves in a dangerous position. In the very least I – we – need to take his words and deeds, what he did on the cross, recorded and passed down by reliable witnesses and writers, with utter seriousness. I place my life and death on these facts. On Him. We can stake our lives on him. And he calls us all to pick up our crosses and follow him, sacrificing our little ambitions and ‘gods’ for a life with guaranteed long-term benefits.
The tough times come and our feelings might spin around. Lydia was on a First Aid course last week, and when it came time to practise CPR, she found herself left with the last of the resuscitation dummies…and it was named ‘Ben’. It was a painful moment, thankfully picked up by a perceptive tutor. It caused a few tears both there and at home for more than just Lydia. Then, only a day after, I walked past Ben’s photo in the hall and seeing him, had to stop and gaze at the picture as I was overcome with a fresh wave of loss, grief and a hundred questions. But then, with no real answers as to why he died when he did, our ‘heads remind our hearts remind our heads’ to rest on Christ, rest on the things we do know, to ‘have certainty concerning the things you have been taught.’ Each of us at home can find peace and a sense of joy and life, despite. If Jesus is the ‘bookends of history’ – the Alpha and the Omega – then whatever comes our way over these weeks and months to come, we can trust Him through them all. There is no greater.
*I’ve often struggled with the word ‘religious’ and my heart often sinks when someone says they or I are ‘very religious’. It’s so often used to describe a life of pious observance of rules and regulations, of austere, lifeless church attending and kill-joy living. It’s also then shorthand for something akin to a hobby that some might have while others have football, knitting or bee-keeping etc. It seems to me that friendship with Jesus and following Him isn’t about any of these things. It’s about ‘Life’ – joyful life, peace-filled life, the life where ultimate meaning and purpose are discovered through a relationship with God through Jesus Christ the one we were made for. And it reaches everything.That without Him, we’ll never know the life in all its fullness that we were designed to have. I’m into LIFE not religion!
It’s been three weeks of both good times and nervous waiting for us all. Having friends to visit and to stay has been great and it was a privilege for Catherine and me to visit Belmont Chapel and Isca Church, both in Exeter, over a couple of Sundays and share our story. It’s reminded us again that in so many of our weaknesses and painful thorny experiences, God’s hand can be seen and strength can be found which both encourages us and others around as they hear about it and see it, even through our occasional tears and as yet unanswered questions.
It’s over a week now since Catherine and I travelled up to Taunton for what is the latest and newest type of scan, one I’d not had before. The Positron Emission Tomography (PET) scan, identical in appearance to an MRI scanner, uses a radioactive tracer injected into the body to look for disease and shows how organs and tissues are working. Basically, when it comes to cancer, where there’s a tumour, it will glow.
The results came back late last week. I glowed in more than a few places. Thankfully there wasn’t any evidence of cancer on any major organs apart from the original tumour on my lung and a tiny one on the liver which is reckoned to be the harmless hemangioma seen on a previous CT scan. Briefly described, there are a whole lot of small tumours in various places (click on the report alongside to see where). The most troublesome of them, the (now large) one under my chin, giving the appearance of a huge ‘adam’s apple’ or even second chin; the enlarging one under my left arm and then multiple lesions/tumours on my right upper thigh – particularly as they’re pushing through the surface and feel like a small pear lying on its side.
The great relief for us all was the absence of any sign of anything in my brain. We’d been concerned as I’ve been experiencing some ‘fuzzy’ heads and low level, persistent headaches over the past few weeks. Maybe its just a man, mid-life thing instead.
The consultant radiologist’s report concluded,
‘Multiple nodal and subcutaneous sites of metastatic disease. Single tiny inter-muscular deposit. Tiny avid focus within the liver could also represent a metastatic deposit and can be followed up on subsequent imaging. Comparison with the diagnostic CT demonstrates progression.’
It has confirmed that the cancer is indeed on the move again, and has also given my medical team at Exeter the absolute low-down on all the ‘where’s and what’s’.
Hearing the results from my ever-reassuring medical journeying companion, Dr Ayman Nassar, oncology registrar in Exeter, he was fairly relaxed about it all. Yes, there’s disease progression, but it’s not developing and appearing anywhere especially serious. Next step? I’m starting on the new pembolizumab on Friday 5th February, and will have it pumped into my veins every three weeks for the foreseeable future…or at least until they can see that it’s having either no effect or until the tumours shrink to vanishing. It’s a drug producing some startling effects in advanced melanoma treatment. I know I’m in the right place as the drug was licensed in the UK for first line use in late 2015 and the NHS provides it at no cost. In NZ, with one of the greatest instances of melanoma in the world, Pharmac NZ has thus far refused to license it. I find that both curious and startling.
I’m doing reasonably OK, although the multiple tumours around my shoulder and neck area sometimes feel, perhaps more psychologically, like my neck is being corralled in. Family wise, we’re all doing ‘ok-ish’ although these last two weeks have brought to the surface lots of old concerns, ones with which we became familiar in the early days of my diagnosis. As I see Catherine and the children hold their breath, wondering what the news will be about me with new cancer developments (but this time now with the pain of Ben’s death on top of it), I find myself engaged in a fresh and more intense dialogue with God. Encouraged by Abraham’s careful, yet bold exchange with God over the city of Sodom,
“What if there are fifty righteous people in the city? Will you really sweep it away….Will not the Judge of all the earth do right?’
‘If I find fifty righteous people in the city of Sodom, I will spare the whole place for their sake’, God says.
Encouraged, Abraham went on. What about for the sake of forty five? Yes. Forty? Yes. Thirty, twenty, ten? Yes.
And then King Hezekiah in 2 Kings 20, when in the face of his predicted death, cries out in prayer and weeping. God responds with fifteen years. Abraham and Hezekiah have further encouraged me in my ongoing prayer life, especially with Catherine, me and the children already going through one dark valley, to pray that it won’t be another. But who can say where it will lead? My situation is not Abraham’s, not Hezekiah’s. I’m simply encouraged that Father sees the bigger picture I don’t see and that the words of Abraham are ones which encourage me to dialogue and engage with Him, sometimes with a tearful passion. But I find myself ultimately resting on Abraham’s words…
“Will not the Judge of all the earth do right?’”
Co-incidentally (or perhaps not), on the morning of my scan results, one of my Bible-in-a-Year readings was the account of Jesus walking on the water out to his friends struggling away on the Sea of Galilee, buffeted by the wind in their small boat. It’s one of those accounts you’ve got to say sounds pretty fanciful and unlikely…unless it really happened. The gospel writers would surely hardly want to discredit their accounts by including things that would cause people to laugh and walk off in disbelief unless there was truth to it. And the reason for the events like this and their subsequent inclusion in the gospels is often to address three questions…‘Who is this man?’ – his identity – ‘Why has he come?’ – his mission – and ‘What is he asking of us in response?’ – his call.
And so, especially for a first century Jew hearing this account, it’d probably take them immediately to the Old Testament book of Job where there’s a description of God…
“He alone spreads out the heavens and walks upon the waves of the sea”. (Job 9:8)
So the real identity being suggested for the one walking on the waters here in front of the disciples? God.
The call was immediately plain. It was so relevant for me that morning waiting for the scan results. It’s seen in disciple Peter’s response to seeing Jesus…
“Lord, if it’s you, tell me to come to you on the water.’
Peter gets out of the boat and, focusing on Christ, also does it. But then something happens. He begins to fix on the wind, the waves…and starts to sink.
Just at that moment as I was reading, I sensed something for me that morning. Here was an aspect of “the call”. Effectively, “Jeremy, because I’m God, will you trust me again today for your life, despite what you hear at the hospital? Will you trust me? Fix on me, no matter what, and you won’t sink beneath the waves. You’ll be steady. You’ll be secure”.
As he reached out and saved Peter from the waves that day, so there are hints at Jesus’ mission – why he came. Ultimately, not to be just a good teacher showing us how to live, or just a healer and not be be some kind of generic light bearer or yet another special guru. Unique above all others, he came as God to seek and save us, not from waves and a watery grave, but from something far more serious.
As I think about it all, I’m taken to C S Lewis’ “The Lion, the Witch and the Wardrobe” and the question that young Susan asked about Aslan the lion, Lewis’ allegory for Christ…
“Aslan is a lion – the Lion, the great Lion.”
“Ooh” said Susan. “I’d thought he was a man. Is he-quite safe? I shall feel rather nervous about meeting a lion”
“Safe?” said Mr Beaver. “Who said anything about safe? ‘Course he isn’t safe. But he’s good. He’s the King, I tell you.”
Lewis puts it well.
In the middle of my low days and good days, through the days when I need more bed rest than before, when my body is struggling with the effects of the fresh advances of the melanoma, I’m remembering the strong God who appeared in history, who was seen, was touched, who stood in our shoes, who walked our walk, who died in my place and who rose, vindicating all he’d said and done. The always good God whose ways I don’t always understand, but who won’t fail me. The One who walked on the waters.
I’m assured once again that the best is yet to come.
As Catherine and I went to bed last night, we did so with a feeling of increasingly heavy hearts and needing a renewed sense of peace.
It all started last Monday. Just as we were arriving to stay with old friends Shaun and Helene in Bedfordshire for the week, I became aware that a small lump on my neck, above my larynx and present for some weeks, felt bigger and certainly more tender. After a late night trip to Bedford hospital A&E, and then an emergency ENT appointment the following day, immediate concerns were allayed as the consultant felt it was no more than an epiglottal cyst, unrelated to the cancer. To be safe however, after a phone call to the Exeter Oncology Department, I was booked in for both an ultrasound and oncology appointment upon our return. Those appointments took place yesterday.
It’s both bad news and good news.
The bad news is that the ultrasound indicated that the mass on my neck is suspicious and not a cyst. There’s also further evidence of one or two other small melanoma deposits in my lower neck.
The good news is that consequently, the surgery planned for today was then, late yesterday afternoon, cancelled. It was felt to be a pointless exercise cutting bits and pieces out when it seems the melanoma is on the move again and that more cancer deposits might just show up in other places in weeks to come.
So, the next step is that I am being put onto ipilumumab’s successor, pembrolizumab, starting within the next 2-3 weeks. It’s a new drug, only just licensed for first line usage within the NHS and is having even more startling effects than ipi. It involves an infusion every three weeks for the foreseeable future.
I’m also being sent for a full body PET scan in Taunton within the next two weeks.We’re familiar with this as Ben had one. It is THE most thorough metabolic scan one can have, and will give the medics a complete picture of what’s what and what’s emerging.
As I arrived home from the hospital last evening, phone calls to the children and our families followed. I think everyone has responded along the lines, “Hhhmmm…OK…right…not bad, but not good”.
Twelve hours after the news, we’re feeling both delicate and as if we’re on a new roller coaster ride. Having braced for surgery and its aftermath, we’re relieved in one way that it’s not happening. But the implications of my melanoma being on the march again, particularly as it involves neck and potentially head, especially tumours…that’s a different story.
An inner journey carries on and once again we find ourselves afresh before the Throne of Grace. As Catherine left to teach the first day of the new term this morning, understandably anxious, I sat up in bed, cup of tea in hand, to read my “Bible in a Year” selection. Psalm 4 was among the readings. I listened and read along as David Suchet read it (click here to hear it). But as I quietly read it again myself, the Word started to do it’s work once more as Jesus drew alongside.
Perhaps we’ve all had times in our lives when we would that the calendar could be paused and time’s inexorable march forward halted, or at least paused. It’s what I find myself thinking as 2015 comes to an end. While it remains 2015, I can still say, “I talked with Ben this year, I prayed with him, I walked with him, I laughed with him…I saw him and sat with him, heard his opinion this year”. But 2016 means it’ll be, “Last year Ben and I…”. That’s a more difficult one to swallow. It seems to emphasise his quiet fading into the past. His most recent photos will become those from last year, then another year, and still another. Today as I write, it’s a year to the day since Ben collapsed under a seizure while he and Dabi were out walking with us. It proved to be the start of the journey into the last phase of the illness from which he would never recover.
While 2015 has seen both its profoundly painful times and far-reaching life changes, it’s also seen more than a few gifts from Father’s hand. Among them, a house of our own to live in, a permanent teaching post for Catherine and an awareness of an enormous amount of love and friendship we’re privileged to have surround us. And this last four weeks of December has been a month of precious times within our family circle. Christmas day was an unexpectedly happy and peaceful time as we celebrated in the morning with Joshua’s church family in Honiton, placed flowers on Ben’s grave before midday and then sat to eat and relax with each other – just Catherine, me, Simeon, Tom, Joshua and Lydia – laughing, sharing and reflecting, all the time of course conscious of a large gap. Tom had turned 21 just days before and eleven days before that, Catherine and I had celebrated our 26th wedding anniversary. She and I were treated to a weekend away by both our church and the Hill Church in Swansea, spending two nights on the beautiful Gower Peninsula in Wales. We were then privileged to share our family story and testimony as Robin Vincent, pastor of the Hill Church, interviewed us for half an hour at their main service late on the Sunday afternoon. Sharing it once again made me realise afresh that often we can find and experience more of God’s grace and strength in the dark times, and that we can more profoundly grow in a real understanding of His character as we go through difficult seasons. As I particularly discovered in 2007/08 during an intensely dark and painful time in my life, one caused by my own failure, that rather than these times being occasions that might make us either wonder where God is, if He exists or why He permits suffering, they’re times He allows (or even sometimes causes if he’s disciplining us in His Fatherly love). They’re seasons that can offer profound opportunities to know Him more as our own bag of resources for coping is emptied and He’s all we have left. We discover further depths of His love, His forgiveness, His grace – in more ways than we could if the proverbial sun always shone. They’re times for which we can be thankful and ultimately embrace, if only in hindsight. Days after we came back from the Gower, I read these words in the Old Testament prophet Habakuk…
” Though the fig-tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the sheepfold and no cattle in the stalls, yet I will rejoice in the LORD, I will be joyful in God my Saviour. The Sovereign LORD is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights”
If a man or woman has really gotten to know Him, then even when our soul’s season feels to be winter, you and I can still trust Him by holding onto who we already know Him to be – and that He hasn’t withdrawn or deserted us. They can be times of invitation to come into a deeper experience of trust and fellowship with God, to know the grace of our Lord Jesus Christ, the love of God and the fellowship of the Holy Spirit.
I’m going to hold onto that as the new year arrives and I face at least three hours of surgery under general anaesthetic on 5th January. The MRI scan results I wrote about in my last blog have led the specialists to recommend removal not only of the increasingly swollen lymph node under my arm, but also two growing and hardening melanoma ‘deposits’, one on my inner thigh and the other on my back. I’ll be in hospital for at least two nights, and then unable to drive for 4-6 weeks. Catherine is understandably anxious about it all as in so many ways she’s often more affected by all the potentials than I am. In myself, I’ll be glad for the surgery because of the discomfort I’ve been increasingly getting. It’s no fun waking up at night finding that the node under my arm has been pressing against nerves and left me with a dead arm. Post surgery, after a few weeks, I’ll be scanned again, at which point a decision will be made about any need for fresh immunotherapy. My ongoing and sometimes intense spells of tiredness make me aware of the ongoing effects of the disease.
As 2015 comes to an end perhaps I don’t wish for time to slow down after all as I remind myself that every hour is an hour closer to that breathtaking time the scriptures plainly promise when, for any of us who in this life have placed the weight of their life’s trust on Jesus Christ, we’ll see Him face to face and “all shall be well, all shall be well and all manner of things shall be well”. There’ll also be lots of smiles of happy recognition and reunion as we see those others who we knew and loved who had also trusted Jesus the saviour in this life, but now there in the bible-promised new creation. Not among the clouds and harps of the caricature cartoons, but in the physical yet spiritual place that the Bible so clearly and repeatedly describes, heaven and earth recreated and combined – with resurrected and perfected bodies like Jesus’ resurrected body, living eternally. It’s a vision of God’s grand future for which I long, yearning for it most of all because of what John saw and recorded in Revelation when he said,
For the Lamb at the centre of the throne will be their shepherd; he will lead them to springs of living water. And God will wipe away every tear from their eyes.
As the calendar flicks over into 2016 and if you’re one for New Year resolutions, Old Testament prophet Jonah gives both an ancient warning and encouragement for 2016 when he says,
Those who cling to worthless idols forfeit the grace that could be theirs (Jonah 2:6)
Whatever that idol might be – something material, some habit or lifestyle, our pride or ego, things which we so easily grasp hold of and pursue – they’re things that ultimately can cause us great harm and loss. Christ, once the baby of Bethlehem but who was to become the game-changer, the death-defeater, the life-giver through his death on the cross, offers us grace – simply meaning his undeserved favour. Rather than the utter horror of hell – the place of God’s and therefore good’s absence, and the place that Jesus described more than he did heaven – it’s now eternal life offered through the blood-bought invitation to you and me to lay those idols down, to profoundly turn and trust, and take hold of the life in Christ. Held out to us is the promise of a place for each in the Kingdom to come, in the Father’s house, around His throne, within the beauty of Eden restored, utter contentment and sheer joy.
I’m so up for that.
I resolve therefore in 2016 to continue to “press on to take hold of that for which Christ Jesus took hold of me.” Following can be tough. It can be inconvenient. It raises questions. It causes others to ‘tut’, to even dislike us. It can be painful. Just look at those faithful Iraqi, Syrian and Egyptian Christians refusing to disown Jesus before numerous ISIS jihadi executioners. But somehow, they knew it was worth it. Because He’s worth it, and with Him, the best is yet to come.
I wish you a great Christmas season and a happy New Year 2016, discovering more of the wonder of God and what He’s ultimately got planned.
After nearly a week of waiting, the message came through from both my Hospice consultant (who can access my records at my request) and then the Oncology Dept that my MRI scan results indicate that the shadow on my liver is nothing more than a harmless haemangioma. That’s such great news and we’ve all allowed ourselves to go “phew”. There remains though the question of the lymph node lump in my arm pit. Apparently there’s some thought that the plastic surgeon will be enlisted to remove it, but that’ll be addressed at the meeting of the ‘Multi Disciplinary Team’ on Monday and I’ll then know more. At the same time as all this, I’m conscious that the ever-present lump at the primary site of the melanoma (on my inside leg) feels slightly bigger and, like its sibling under my arm, can be a source of some discomfort at times. Like some uninvited house guest randomly wondering around causing a disturbance in all sorts of rooms, this cancer is one that seems to have that capacity. One month, it could be ‘here’, the next, ‘there’ then ‘down there’, or ‘up here’.
Just a couple of hours before I heard the news about the scan result, I’d been reading the first letter of Peter (1 Peter) in the scriptures. I read words so familiar to me from over the years,
“ ‘God opposes the proud but gives grace to the humble’. Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.”
I did, and he does. Sealed in blood.
Well that was an interesting one…40 mins lying still in the long tube of an MRI scanner, a giant equivalent of a packet of polo mints/lifesavers, listening to BBC Radio 3. The most relaxing thing I’ve done all week. #tracingtherainbow #zonedoutinatube #nowtheresults
A good friend of mine from Exeter was away this last weekend, speaking at a church in another corner of the country. As Dave and I were talking then praying together about it last week, we touched on the bible passage he was to be speaking on, one from Luke 13. It refers to a tragedy that had taken place in Siloam. A tower had collapsed killing eighteen people. There was no apparent rhyme nor reason to it, and despite people seemingly wanting to explain it by pinning blame on the victims as if they had somehow done something to deserve it, Jesus counters it with a clear, “I tell you, no!”. And now, just last Friday night, news has reached us of the terror attacks in Paris with 132 people dead, all as equally undeserving as any of us or those in Siloam two thousand years before. Another tragedy we face with no small number of questions. There aren’t any guarantees for any of us, no “sky is always blue” in our lives on planet earth, no promises of paradise on earth. Good times are tainted by ensuing disappointment. Pleasure by pain. Happiness by loss, even tragedy.
I’ve been forcibly reminded of it again personally after a mixed-news visit to my oncologist late last week. Whilst he confirmed that my tumour has shrunk, Dr Goodman is now expressing a question. The scan I had a month ago showed a shadowy area on my liver. It’s one that’s been there all along in every CT scan, but he’s always judged it to be a small harmless lesion (a haemangioma). However, because it now appears to have grown by up to 2mm, it could indicate that it’s not actually a haemangioma but a melanoma tumour. Positively, it’s possible that it only appears bigger because of a different angle on the latest CT photo. But negatively, as it’s been accompanied by the appearance of a marble-sized lymph node gland in my left arm pit, he’s concerned about it. To clear up the questions, he’s ordered an MRI scan this coming Friday and is suggesting we might need to consider removing the lymph nodes under my arm.
Either way, if the shadow is either a slightly expanding, yet harmless haemangioma or a tumour, it would would explain why I’ve had a degree of intermittent low level discomfort in that region over the last few weeks.
It does somewhat downgrade the good news I wrote about here two weeks ago, and (to use Star Wars language), it feels for Catherine, me and the family like a “disturbance in the force”. It has mildly unsettled us. We’re continuing to remember, however, that the main tumour on my lung has continued to shrink. That’s indicative of the immune system doing what was hoped. If need be though, they will with no hesitation, put me straight onto ipilimumab’s son & heir, pembrolizumab. I’ve apparently been quite a celebrated case in the Exeter Oncology Department as I’ve responded so well to the immunotherapy and with virtually no side effects. A praying multitude around the globe I’m sure has been a factor.
The question I ask though is, “Where do I go with the thoughts and feelings that resurface again when I get news like this?” I’m no more immune from both the painful and the tragic than those folk in Siloam, in Paris, in Beirut, in Syria and other places. Even as I was reading through Luke 21 yesterday morning as part of Grace Church’s daily reading plan, I was reminded that suffering, even agony, is part of the journey for God’s people. What it does do is to cause me to quarry down deeper into Father’s love and Christ’s perseverance. As I do that, there are always further depths to plumb, gold to be found, shortcomings and weakness to be exposed then respectively forgiven and strengthened. Jesus’ response to the tragedy at Siloam was simple. “Unless you repent, you too will all perish”. He’s getting at the fact that life is unpredictatable. Tragedies happen. Death can catch any of us out at any time, and for whatever reason. But by the word ‘perish’, he means eternal death – not a happy concept! It might seem to our ears initially harsh, but I’m reminded that this is the God who loves me profoundly, telling truth that needs to be heard. If I want to survive a perishing eternity, there’s a way out. Repentance. An honest acknowledgement before God that we’ve lived “too much by the devices and desires of our own hearts” rather than like His perfect Son. Repentance is the first step in an ‘into-eternity’ relationship with God. But it’s also an ongoing necessity in this life for a close walk with Him – it’s an ongoing entry point for the Holy Spirit to work in me, making me more like Christ. It’s not a route to a pain-free, tragedy-immune life on earth, but it sure is the road that provides God’s great strength (aka his “com-fort”) to carry on in the face of life’s brutalities. Repentance and faithful confidence in Christ is the doorway to the joy-filled life, to the highway of deepest peace.
Over the weekend, while reading from Hebrews 12, I read –
“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.
Among that great cloud of witnesses are the many (and often stumbling) men and women who feature in the pages of scripture. Others of them surround our family at home and at church; still others are friends near and far. They’re all there cheering us on and keeping us buoyed. As I head towards my MRI scan on Friday and then wait for the results, I hold onto all these things, aiming not to lose heart. I’m keeping my eyes on Him who died for me and now sits at the right hand of the throne of God. It seems to me a great place to focus.
PS I’m really thrilled that Joshua has contributed something today in the column alongside, now entitled, “Joshua’s Encouragements from the Scriptures”. It encouraged me too. He’s currently living in East Devon working for The Community Church, Honiton.
Some weeks ago while I was house sitting for friends one morning, I noticed some words they’d written on a piece of paper and stuck to their fridge. They were words first penned by Charles Spurgeon, England’s best-known preacher for most of the second half of the nineteenth century. The words struck a chord that morning and have continued to resonate with me….
“When I thought God was hard, I found it easy to sin; but when I found out that God is so kind, so good, so overflowing with compassion, I smote upon my breast to think that I could ever have rebelled against One who loved me so, and sought my good.
That love “so overflowing with compassion” has continued to be an anchor for us as we continue this journey into each week and it’s shown itself in a number of ways. Among the encouragements was a few days in London with my brother Hamish and his wife Tanya before they left on a long trip, then also a visit from Pastor Richard Zevenbergen, one of Ben and Dabi’s church leaders from Joinville, Brazil. He took time out of a busy ministry trip in Europe to fly across to UK for two nights to pray with me and spend some time. It was great. Then seven nights in Guernsey last week with old friends Phil & Sarah Baskerville, leaders within Shiloh Church on the island, was so refreshing. To spend time with them, laughing and reflecting on old times, on family life, on ministry, was a re-charge.
While we were in Guernsey, after a couple of days of feeling unwell, I called my oncologist in Exeter to ask him whether he could expedite my CT scan results from the previous week. A couple of days later, while lunching with more friends, news came from Exeter that the scan showed further tumour shrinkage and that all looked to be well – ‘disease control’. A cheer went up from the lunch table that day! If we don’t already know it, a couple of GP friends have since commented that this really is a remarkable thing with a usually impossible disease that we’re seeing. Whether by ipilimumab or prayer, or through a combination of both, something is happening.
A day visit from Guernsey to the tiny island of Herm was a highlight, especially as it marked six months to the day that Ben died. We were able to spend a few quiet moments in the ancient chapel on the island in prayer and thanks, and later on the ferry, a memorial moment in our minds as we remembered the actual time Ben left us.
Grief is such an unpredictable thing. Some days, I feel as if life is normal, other days it is not. The night before we left for Guernsey, Catherine and I, Joshua and Lydia were siting at the meal table, all laughing loudly over something. Suddenly I stopped. Catherine looked up at me. I sat, my eyes welling.
“Are you OK?
And as I started to answer, I broke down and wept, “Ben’s never going to sit round the table with us again, never going to laugh with us again here”.
I find myself weeping for what I’ve lost. Weeping for Dabi who’d found in Benjy her life-mate, the one who seemed to have found the key to her soul. Gone. For my parents, for Catherine’s parents – four grandparents who in their senior years might have hoped to enjoy a certain sense of rest and peace as they look out and survey their family. They now find life is marred by a wound of loss that will be hard to heal. I weep for Simeon, for Tom, Joshua and Lydia. No big brother Ben to share life. No easy or slick answers.
But perhaps there’s an answer of a different magnitude found in words I tripped over in part of my daily bible reading this week. Hebrews 6 says,
“…we who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where Jesus, who went before us, has entered on our behalf”
The word ‘hope’ as it’s found in the Bible and as a good friend reminded me last Sunday night, doesn’t mean what we usually take it to mean in everyday speech where it’s generally no more than just wishful thinking eg “I hope it’s sunny tomorrow”. No, it’s a firm thing, based on firm facts and located around a real person. That person – Jesus Christ – who lived, who died, who rose again from death and was attested to by eye witnesses, takes us in behind what was once a separating curtain between us and God. And through His own body, torn and scarred on the cross, He opens up the way as both our ransom payer and mediator…but also as the eternal God. “He became what we are that we might become what He is.” (Athanasius, 296-373 ad). That without one who was God himself standing in my place, I am without hope.
The words I read from Hebrews remind us that real, lasting, secure hope – hope that can be counted on even when everything else might seem to be crumbling – is found Christ. HOPE that’s an anchor for the soul, firm and secure. Whether it’s grief over the loss of a son, tears for others, whether it’s death I face or life continuing in the body, I’ve found an anchor for the soul, firm and secure. The kind, good and compassionate God.
Though tears may come, nothing compares to the promise I have in Him.
I was thinking today that this was an autumn I wasn’t expecting to see. This time last year, I really thought the leaves would be falling and I wouldn’t be here to see either them or even the entire summer we’ve just had. The different perspective on life and living that it brings is noticeable. Relationships have deepened and various friendship ties that might have become loose have been strengthened. Priorities to which I might have paid little more than lip service, have become more plain, even urgent. It feels like a fresh flowering of life.
In the middle of that flowering, we had wonderful news late Monday afternoon that following an interview, observed teaching and planning sessions, Catherine had been appointed as the permanent, full-time teacher in one of the Early Years Foundation Stage classes at the primary school in which she’s been working for the past year. It’s fifteen minutes drive from our new home. The joy was tangible as we stood hugging each other, both struggling with our emotions. It’s been an eight year journey for her to reach this point with no small number of knock backs – along with some encouragements – along the way. If Father’s timing is said to be perfect, here is another example. Just when I’ve stepped back from my regular paid employment and the need is there, so is God’s provision. Paul’s words to the Philippians show themselves true again as I read, “Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving, present your requests to God”. Those answers might not come as quickly as I want; some prayer might remain apparently unanswered as Jesus has something better for us. But He hears and he acts. And so we pray on, holding our lives and our broken world – including fleeing, desperate Syrians,Iraqis and others – before Christ.
It was a privilege to travel down to Plymouth some weeks ago, to be in a studio for a live recording session as one of Ben’s best friends, Samuel Chapple, laid down a number of piano tracks for an album, among them his arrangement of Amazing Grace, arranged, played and recorded as a tribute to Ben. I’ve included a link to it at the bottom of this page. When we find ourselves in a broken place, it’s a truly beautiful piece of music and we’re so grateful to Sam for this way of expressing his love and affection for his friend.
But just as I prepared to write and post this entry, I’ve learned of the death of a friend who was one of my closest during my teenage years, through my twenties and beyond. Nigel was, until illness overtook him last year, an associate professor in Sydney lecturing and researching neuromuscular diseases. He and I were at kindergarten together, lived in the same street for many years, attending Christ’s College, cycling to school together, both playing in the school orchestra (he was a great flautist), shared employment both as scrubs cutters and gorse sprayers in Pigeon Bay near Christchurch and then on a road gang installing road signs in Essex in 1989/90. He was my Best Man as I married Catherine. As well as sharing a surname (his with an added ‘e’), we shared many fun and memorable times. I’m only sorry that in recent years, because of the distance and, more latterly my own health, I’ve not been able to see him as much as I would have liked, but we had been in as much email contact as we could both manage in this last year. We had shared the irony of the fact that we were both now facing serious life threatening conditions having shared so many other things in life together. Sadly, both his chemotherapy and immunotherapy treatment proved to be unsuccessful. I’ll miss him. The rather precious photo (click on it for a better view) shows him with Ben on his lap reading him a story at our home in Auckland in 1993. The bitter twist is that they’ve both left us in the same year. I’m filled with a fresh sense of sadness.
As I watch Sam play his rendition of Amazing Grace in tribute to Ben, I also think of Nigel. God’s amazing grace given through my constant companion, Jesus Christ, has given me so much for which to be thankful. It was grace that extended to both Ben and Nigel. They were a gift to me.
Sam has wonderfully included a short tribute/ascription to Ben at the end of the video.
It’s a strange thing to be sitting here writing knowing that it was a year ago yesterday since I was diagnosed, twelve months since I received the news that I probably only had six to eight months to live. And in that time, our lives have been irreversibly changed in so, so many ways. The great irony of 21st century life is that despite advances in all areas of science, of technology, leisure and more – our lives are so finite and despite our wishful thinking, we have so very little idea what the future holds or any power of ourselves to control it. I remember so clearly when Catherine and I moved to the UK in 1997 and I joined the staff team at St Mary’s Upton on the Wirral, my first preaching engagement at their large evening service was teaching from the New Testament letter of James, a book that they were working through on Sunday evenings. James’ words struck me then, but strike me now with even greater force –
Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”
Our lives are precious but unpredictable. We have no idea what’s round the corner. If someone had said to me on the morning of 2nd July last year – the day before news of Ben’s first seizure in Brazil reached us – that by May this year, he’d have died and I would be retired from parish ministry because of a terminal cancer diagnosis, I would have looked, in the very least, bemused.
But in a generation that, faced with both mortality and death, quickly sticks its fingers in its ears and loudly shouts “la, la, la, la, la, la”, producing all manner of distractions – including remaking God in our own image – in an attempt to avoid facing up to the big questions death poses, questions about what life is ultimately about, about how we’re facing up to standing before God (if we believe in a God at all), about our own shortcomings and failures, then…then I’m reminded of the sheer wonder of both the place of peace and the answers found in the man who came from heaven as ‘God with us’ saying “Whoever believes in me, as Scripture has said, rivers of living water will flow from within them” and then, standing at the grave of his friend confidently asserted, “I am the resurrection and the life…those who believe in me, though they die will live”. And the apostle Paul, speaking about Him wrote, “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. It’s just that what He says throughout the gospels, hard though some of his words are, makes sense to the human condition and why his teaching has spoken to generation after generation over 2000 years.
Some do wonder, looking at our family thinking, “well if God is so amazing, it’s not exactly a good advert for Him that these things have happened to you”. But I can honestly say that for us, while it’s been a painful year, it’s been a precious one of knowing Father’s grace and supply in the middle of weakness and devastation in ways that we’ve not known before. We wouldn’t say that God has necessarily caused the things that we’ve experienced this year – they’re bigger questions for another time, perhaps another age – but neither has He been back-footed by any of them, as if left wringing His hands in despair, caught out, surprised and not sure what to do next. No, right there in the middle of the twists and turns of those things that happen to you and me, for anyone who’s repented and believed the good news about Jesus and placed the weight of their life’s trust on Christ, He’s immediately and already there by his Holy Spirit, using even the worst of things to bring not just glory to His name, but grace and strength for us as His precious sons and daughters, as well as an opportunity for a deepening trust and encounter with Him that no other circumstance perhaps would offer. If I consider that God’s greatest purpose and plan to save you and me involved Him using what hell and evil thought was its finest hour of triumph gained through crucifying Jesus Christ, and turned it into heaven’s greatest victory, then I’ve got a confidence that His arm is not too short to save and help us in our smaller circumstance. Quite truly, “we know that in all things God works for the good of those who love him, who have been called according to his purpose”.
And it’s from that place of peace that we continue to live with the things we face. We continually feel so blessed living in our new home, pinching ourselves that we can be here, with great neighbours all around us. The garden (click the photos for a bigger image) is now looking beautifully transformed thanks to my wonderful mother’s design, Marc & Angie’s spadework and then some careful planting. It’s also been great to have friends who’ve lately scooped us up and taken us out or had us to stay – thanks Matt & Louise, Phil & Mal. I’m generally keeping well, although regular bouts of nausea – AKA Jeremy’s morning sickness – as well as the recent appearance of marble-sized lumps, one in an armpit and one at the top of my throat, accompanied by some tenderness and discomfort, have brought us up short. A phone call however to the oncology department assured us that they didn’t think it was anything to be worried about, more just swollen glands because of other things. My next scan takes place in two weeks, with results returned three weeks after that. Bouts of sudden tiredness regularly strike me, confirming that it’s been right to change tracks work-wise and be about other things. Among them, I’ve taken on a pastoral support role serving the twenty five or so ministers and pastors from across the denominations here in the city who belong to the Exeter Evangelical Partnership, visiting them, listening and praying in what, for some, are sometimes lonely and difficult situations. Our church family at Grace Church in Exeter have been a real blessing to us and provide us with a place of care and enormous encouragement, as well as giving us opportunities to continue to serve in a variety of ways. Catherine has started back at school, this time as class teacher and being interviewed for the permanent post this Monday; Tom is back in Cardiff, Josh now living in Honiton and loving working for his church for the year (click here to see more), Lydia enjoying a fresh start at Exeter College and Simeon the rush of a new motorbike.
We’ve also just passed the five month mark since Ben’s death. The range of emotions that I find I live with leave me with both agony and ecstasy sometimes within hours of each other. Some days feel normal, others by no means. On a break away in Oxford with Tom three weeks ago (thanks again Chrissie, Nick, Annabel & Theo for having us), I shared with Tom my angst that I was living life too normally, not showing enough grief before the children, perhaps giving them the impression that I didn’t love and miss Ben much and therefore that I don’t really love them or wouldn’t miss them much if something happened to any of them. Tom was a great counsellor and just simply assured me that he – they all – knew that I loved and grieved for Ben, that he knew I loved and would feel the same for any of them, that life had to carry on with much normality – going to the shops, laughing with friends – and that none of these things meant we were turning away from Ben and our memories of him. As I shared more with him, he listened as I said I was finding it hard to cope with the thought that the photos we anticipate having of them all – of Tom, Simeon, Josh and Lydia – will over the years show them maturing, changing and moving on, but Ben’s last photos will remain unchanged, never to age beyond 23yrs old, and only to fade. It’s in those moments that I feel an overwhelming and deep heaving sense of the loss of Ben, of what has been – of hopes and dreams that we had, that Ben and Dabi had. I felt it so deeply on Sunday night two weeks ago that I found I was rounding on myself critically saying, “HOW COULD YOU’VE LET THIS HAPPEN!? YOU WERE HIS FATHER! HOW TOTALLY IRRESPONSIBLE YOU WERE. YOU COULD HAVE DONE SOMETHING MORE! I had to sit quietly alone realising that reasonableness told me something else. But despite that, I cried myself to sleep that night – Catherine having gone to bed earlier – heaving deeply as tears were streaming onto my pillow. Father thankfully brought healing sleep that quickly overcame me.
Yet for all that too, I have moments of utter ecstasy. The ultimate aim of any Christian parent should be that above anything else, each of their children finds a personal saving relationship with Jesus Christ and that they build their lives around knowing and serving Him and that ultimately they’ll go to be with Him for eternity. And so I found myself sitting on the grass next to Ben’s grave last week, through tears, laughing and smiling and worshiping Jesus that that’s where he is – safely tucked away in that place where I’ve wanted all my children to one day ultimately be. And so moments of sheer joy overcome me as I think Ben is face to face with the One he came to know years ago – Jesus – who Ben, with Dabi, had been building his life around.
During this week, we gathered with our church family for an evening of encouragement. As we worshipped through song together, we sang “This I Believe”, a song based on the Apostle’s creed. I felt tears forming and my hand rising in surrendered worship as we sang…
I believe in the resurrection
That we will rise again
For I believe in the name of Jesus
I believe in You
I believe You rose again
I believe that Jesus Christ is Lord
…that because Jesus rose, so His blood-bought people one day will physically too. That Ben, not yet with his perfected resurrected body, but certainly in spirit, is there already with the “spirits of the righteous made perfect”…that one day, after Christ’s return when that which we proclaim in the creed – the resurrection of the dead – will take place. Then we’ll see with our own eyes, stand in our renewed flesh before our amazing Saviour, because of his substitutionary death for each of us on the cross, because of His amazing grace and forgiveness, …and “we shall be with the Lord forever”. The sense of the hope of glory, of what lies ahead, fills my tank for serving Him today.
Finally, we love hearing from you all either by way of comments left here on the blog on in emails. They mean so much.
My many weeks of silence since last I wrote have been for a number of reasons, but perhaps really only one. With the busyness of our house move eight weeks ago, taking my brother’s wedding in Kent and a holiday with our wider family from New Zealand and Australia, followed by clearing the Vicarage over these last few weeks and numerous associated trips to the charity shop warehouse and recycling centre, it’s been a non-stop season of change, with lots of joys and things to remember.
But perhaps the real reason is that it’s been painful to stop. For each time I do, the reality of Ben’s death sits on me. Its noise means that there is no easy sitting in quiet without it drowning out what silence I have, making times of quiet – even to pray – feel impossible. Even as I write now, I find my jaw clamping and my eyes welling, and something deep down inside me crying out with an extended, “No! no!…this cannot be!” On 27th July it was his and Dabi’s second wedding anniversary and eight days ago, it was 100 days since his death and I know it’s high time to write again. I know that in writing, it’ll help me continue to process and own what’s going on inside and prayer will come more easily, allowing a river of healing to start to flow more and more as I keep saying, “Father, I don’t get all that’s happened and don’t understand ‘why?’ …but I trust You’.
We’re all as a family adjusting and supporting each other as we go; keeping Ben’s name as common currency around the house has been vital as have been the tears and the occasional meltdowns. There are those particularly tough moments such as our visits to his grave when we see the small plaque in the ground reading “Benjamin Clark…Died 28th April 2015…At Rest…Aged 23”, and we feel more speechless than before. How helpless did I feel when Simeon arrived at the house two weeks ago having laid some flowers at the grave, and looked at me through tear-stained eyes and said, “Dad, don’t you go too – I couldn’t stand it”. All we could do was hold each other through our tears.
It’s been such a gift to have so many friends around us – those who’ve helped us move, visited, those who’ve assembled furniture, stripped wallpaper and painted rooms for us, who’ve had us over for meals and prayed with us. Our family at Grace Church here in Exeter have been superb – to walk into the Sunday morning gatherings and hear from God’s unchanging Word and sing powerful hymns, many written hundreds of years ago and sung by the saints over the generations, expressing timeless, unchanging truths about our wonderful Saviour God. They’ve been a life line. So too have been times with the blokes from Grace Church in our community group as we meet regularly for breakfast to share and pray for each other. To have been able to cry with them has been releasing. It’s been a heartening reminder of what the body of Christ can do and be as it carries along one part of the body that’s hurting.
Finally, after what was an inconclusive autopsy, we have had news from Ben’s neurologist as to the the likely cause of death. Having disseminated the histology results around the world, he asked us to meet him recently to tell us that the not-yet-proved, but likely cause of death is a new and rare virus known as Henipavirus. It is one which has, up until this point, only been found in north-eastern Australia, Malaysia, Madagascar and Ghana. It arises from the urine of a fruit bat infecting fruit which is then ingested, or can be picked up from horses which have been infected from the fruit bat. The fact that the incubation period is quite short indicates that because Ben hadn’t visited any of those places (with the exception of Malaysia many years ago), he most likely contracted it in Brazil, making him possibly the first case to be found there. Dr Harrower was clear with us that there is no known cure for it yet. Whilst it’s cold comfort to know this, we were strangely helped as it would have been harder to discover he’d died from something for which there was a cure. He also shared with us that, had he lived any longer, Ben would have deteriorated physically and become increasingly mentally impaired. Again we felt a sense of relief that he was spared this. But nonetheless, we process this information with a mixture of unreality and more than a few “Why?..Why Ben?…How?…?”
Next Friday, I have an appointment to register his death at the Civic Centre. The following day would have been his 24th birthday. We’re gathering with some family and friends for a picnic near Plymouth, his home for three years until 2013, to mark it. It was great to have been down in Plymouth two days ago in a recording studio as Ben’s oldest friend, Sam Chapple, recorded his own arrangement of Amazing Grace in tribute to Ben.
In terms of my own health, just yesterday, I had the good news from my oncologist that after a CT scan two weeks ago, my tumour has further reduced in size – not as much as last time, but it’s going in the right direction. And we must remember that this is a cancer which up until recently was considered rampant and virtually unstoppable. Whether it’s principally the ipilimumab or the 10,001 people around the world joined in prayer for me, I’ll not know this side of the grave. But I’m content to thank Father for His work through any and all methods. We’ve all collectively breathed a sigh of relief – the days leading up to my results always cause some anxiety. Josh has described the feeling well in a song he’s just written and recorded, entitled Diagnose…to listen to it, click here. But to help enhance the good flavour of the day, Josh also found out yesterday that he passed his A Levels. This, on top of some great Uni results for Tom (who had to sit a late exam in Cardiff this week because of one he missed on the day of Ben’s burial), means we can all feel a good measure of thankfulness.
And so the journey continues for us all. Dabi remains at her parents home in Brazil slowly rebuilding, while we here in Exeter also watch our changed lives take shape in a new house that feels like home already. We’re very much loving living in St Thomas just a short walk from Exeter’s beautiful quayside and feel so grateful to so many, and ultimately Father God, for making it possible. We still pinch ourselves to think how it all came about. With the Vicarage now cleared and cleaned, all that remains to be done is to relocate a few plants from the Vicarage garden in September to go in our small – but bijou – new garden which is about to undergo a miniature ‘grand designs’ makeover.
As we walk into the future, I’m reminded from the scriptures of Jesus’ time in the wilderness, being tempted by Satan to turn his back on his Father and give up on His character and promises. Whilst I’m not necessarily being tempted with the same things, nonetheless there’s always the lure through all that’s happened, to listen to that other dark voice that says, “Give up. With all that you’ve been through, surely there’s nobody there to hear your prayers and help. It’s all wishful thinking”. But the eyes of faith see something else. They recognise the presence of Christ, the hand of God, working through and with our pain to bring us to a deeper experience of His goodness and amazing grace. The eyes of faith see that in the hour of Christ’s greatest agony on the cross when He cried out, “My God, My God, why have you forsaken me?” followed by the words on his dying breath, “It is finished” – that even then, when things seemed bleakest, darkest and out of control, God was doing His greatest work for us. I tell my soul in these moments that we live through, “Put your hope in God, for I will yet praise him, my Saviour and my God.” His past faithfulness gives me hope today. Like Christ in the wilderness, it’s a case of holding onto Father’s firm Word. It’s not a blind faith or a ‘religion’ – it’s a relationship and trust in Someone attested to by multiple eye witnesses who were prepared to put life and limb on the line because of what they’d seen and heard, carefully recorded (with now an almost embarrassing wealth of unchanged manuscript evidence to show the written record we have in scripture hasn’t been changed), and based on the fact of His resurrection from the dead. Because of the ultimate vindication that Jesus’ resurrection gave, it’s a blazing signpost saying here is One, unlike anyone else ever, that we should listen to above all others and build our lives around. And that, through thick and thin, He can be trusted. He’s my champion. My hero. Our champion, our hero.
Arohanui – big love – to you all.
A few practical matters….
For those who’d like our new address, please click here…it’ll generate an email you simply then need to send without adding further text (unless you want to!) On receipt of the email, I’ll reply with the details.
If you’re at St Mary’s, Upton, a Clark family contingent hope to be with you this Sunday evening!
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As all the sights, sounds and sunshine of a Devonian summer increasingly surround us, our lives are affected by an amalgam of emotions as we live in this strange new land of loss that we’ve never occupied before. Normality carries on around us as Josh and Lydia sit A-Levels and GCSEs respectively. Tom has arrived home, fresh from exams and his first year at Cardiff and Simeon’s finding the gym a great place to be. Catherine carries on at work in school while we both prepare for our house move. We enjoyed four precious days with old friends Phil and Sarah Baskerville on Guernsey just two weeks ago, and then, within a few days of arriving back, we said farewell to the five churches of our ‘Mission Community’ at the end of May and received a good and generous send-off. In these last few days, we’ve been so excited to finally and suddenly exchange contracts for both the sale of our flat in Crediton and then, an hour later, for the purchase of our new home in Exeter. The flat’s sale is due to complete this Friday and our new house next Tuesday. The excitement we feel is palpable – that after all these many months of hoping, wondering and daring to pray for a place for the family to call home, it’s now within sight, thanks to Father’s provision through many who together have made it possible. But it’s been a story of many chapters and one part of it I want to share involves our insurance company.
In 2000, I took out a Critical Illness policy which, back then, was worth a significant £X. Over the years, that policy has reduced in value markedly to the point it was worth only a quarter of what it was 15 years ago. It was, however, now more than ever worth making a claim and putting the proceeds towards the house. And so I completed the paperwork in March and waited. In the meantime, we applied to ‘port’ our current mortgage across to the proposed new property and were initially told we could. All seemed to be going smoothly until we hit a bump in the road with the mortgage company – on May 13th we heard that they wouldn’t be party to a purchase where friends had contributed. The mortgage could not therefore be ported. We were left dazed. Now, with only a few weeks before contracts were due to be exchanged, we found ourselves high and dry. Deciding we couldn’t delay, we went to see our own bank. Part way into the meeting with Luci, their helpful mortgage arranger, having shared our situation with her – my health, our loss of Ben, our need for a home – she left the room for some more information. As soon as she’d gone, my phone rang. It was the insurance company. The call left me speechless and Catherine in tears. Having both received reports from my doctors and considered my case, it had been decided that they were going to pay me out as if it was 2002 – the year I had my first brush with melanoma – when the policy was still worth £X – plus they were going to refund all my monthly premiums since 2002. It was the amount we were, at that moment, seeking from the bank as a mortgage. Just as we were in Luci’s office – not too soon, not too late – the phone call had come. How many insurance companies, I have asked myself since that day, give you nearly four times what you had expected and requested? It seems to this faltering and sometimes struggling disciple of Jesus that His hand was at work. I’d dared to ask Him months ago in prayer, “Lord, would you provide us with the right place to live, and could I even ask that we could be free of a mortgage?” Here now it seems was His response. As Luci arrived back in the room, we were struggling to contain ourselves. We told her our news – she joined in the tears – and we left amazed. No mortgage needed. And now, with so many family members & amazing friends behind us and offering to help with the move next week, we’re full of excitement as we face this new chapter moving in.
Yet all this is tinged with a pall of sadness. Ben. Gone. Dabi, now returned to Brazil. There’s a strange sense of wrongness I occasionally feel in going about the everyday things in life, as if I shouldn’t. Our precious son has died. Nicholas Wolterstorff puts it well when he writes,
It’s the neverness that is so painful. Never again to be here with us – never to sit with us at the table, never to travel with us, never to laugh with us, never to cry with us, never to embrace us…never to see his brothers and sister marry. All the rest of our lives we must live without him. Only our death can stop the pain of his death. A month, a year, five years – with that, I could live. But not this forever. I step outdoors into the moist, mouldy fragrance of an early summer morning and arm in arm with my enjoyment comes the realisation that never again will he smell this.
“As a cloud vanishes and is gone, so he who goes down to the grave does not return, he will never come to his house again; his place will know him no more” (Job 7:9-10)
Nicholas Wolterstorff, Lament for a Son
I find myself sitting on the sofa regularly, staring at a freshly mounted photo of Ben on the side table, or listening to the sound of his voice in a recording he sent me last year, my mind doing somersaults as it’s confronted with the seeming violence of this new reality. But at the same time, I also find myself gently confronted by Father who, when I was struggling even to open my mouth in church recently and feeling so overtaken by Ben’s death, I sensed quietly spoke deep into my heart saying, “Jeremy, my gospel, my story, my purposes overarch everything in this world, in life, in your lives, in your life…they catch Ben’s life, his death, your grief and all that you feel up so that nothing is lost, nothing is without meaning…and so, will you simply hold onto me? Will you trust me?” My only response? “Of course Lord…where else can I go? You and you alone have the words of eternal life”
But nonetheless, it’s right to lament. The scriptures remind us in this way…
“But we do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope. For since we believe that Jesus died and rose again, even so, through Jesus, God will bring with him those who have fallen asleep.” (1 Thessalonians 4)
I can see it there in those words. The follower of Jesus does grieve, but grieves with a particular kind of hope, knowing something precious. I grieve holding onto the certainties guaranteed by Christ, by his death and resurrection. That because he died and rose, those who’ve placed the weight of their life’s trust on him, even though they die, will one day also rise bodily to inhabit the very real new heaven and new earth that scripture promises. And that in the meantime, Ben’s there before the wonderful throne with Christ, amongst the “spirits of the righteous made perfect” (Hebrew 12:23) having an amazing time. So it’s HOPE writ large I have…not some wishful, baseless ‘pie in the sky when you die’ hope, but the sure and certain hope wonderfully provided by the ever precious Word of God. Yes, the days can be varied. Some moments, I sit tearful, disbelieving it’s all happened, but then other times I experience a strange euphoria that causes me to smile, knowing that Ben is ecstatic, more fully alive than me…safe and punching the air with joy and a jubilant abandon. He’s there with Jesus, living the dream – Jesus, whose hands and feet still bear the scars of the nails that remind us how it was all made possible.
The words Father God spoke as Jesus was being baptised were “This is my beloved son, with whom I am well pleased”.
I don’t for one minute think I am God or that my son was but the sentiments I feel at my son’s passing are the same as the God of the universe. His reason for uttering these words is different than mine but at the end of his life, having lived 23 years and 8 months, this is exactly what I feel.
“This is my beloved son”.
Ben was the child that made us parents but also made both sets of our parents Grandparents. He was my first experience of pregnancy, child birth, breast feeding and full responsibility for a life other than my own. I was newly arrived in a foreign land, far away from my family and Ben’s arrival united Jeremy and I as a new family unit providing cohesion, purpose and expectation. Here is the poem I wrote and shared at his celebration service, summing up all that made him who he was –
the birth of my eldest son.
The first of five precious children,
the eldest brother to become.
Two parents lovingly nurtured,
Four grandparents behind.
The eldest of twelve cousins,
his position was defined.
a totting up of nine.
Three have been down under
and six on a different time.
his love of travel did arise.
Six continents, ten countries,
a wife this did supply.
He started in New Zealand,
Five years upon it’s shores.
Then seventeen in Britain
until Brazil then had a cause.
He learnt to speak three languages,
English, Spanish, Portuguese.
He worked as a translator
using every one of these.
Such love upon his face.
Ben’s baptism declaring,
He knew his final place.
We miss you here my Ben,
You’ve left us such a hole.
But we know to be with Jesus,
is our final goal.
“With whom I am well pleased”
Ben ran the race with his eyes set on his Father in heaven. He added so much to us as a family and I am proud of him in so many ways. He has left a huge hole but there is no way I would ask him to come back. He has tasted heaven, not as a place “good people” go but rather the place where God’s perfect love is. God won’t make you stay in his presence if you have not chosen to be there. Ben had made his choice very clearly as a young boy.
So how do I, do we move on as a family? I am so, so grateful Father warned me of Ben’s death. On April 12th, 16 days before he died, as I was worshipping in church through singing, I felt Father say to me, “Catherine, how do you feel if I take Ben?” My answer? “Oh Lord, I am not sure I am ready for that yet!” I then felt him explain to me that he had brought Ben home to die, that Dabi had not changed her name to Clark (it being very difficult for her with documentation and travelling to do so and in Brazil you only have one chance; at the legal marriage ceremony) as she would find it easier to rebuild her life with her native Brazilian maiden name and that we had Ben’s entry on the blog to remind us of more lucid days and that he knew where he was going.
I felt shock as I left and met up again with Jeremy but I started the process of accepting Father’s will. I had no idea of timing but we now know it would not be long. Ben was much more lucid in those final few days and we talked about death a lot. He was peaceful. We did not know it but we said goodbye on the evening of Monday April 27th reading Ben his blog entry. He did not remember writing it but as we said to him “so you know where you are going” he agreed and I left. I had no idea I had said “goodbye”.
It has been tough and still is. There is a huge gap, however I feel we celebrated his life in the most wonderful service on May 8th and the short service at his burial on the 12th allowed me to say goodbye. I carry on with the mundane in life, I feel happiness and deep sadness that almost overwhelms me but I know God the Father walks beside me and has bestowed huge blessings on me. Jeremy’s health seems less of a worry, we should move into our mortgage free house soon and I have amazing opportunities at school for the next academic year. I will never get to a point of saying “ah, all done now, no more grieving”. If I live to 90 I have 42 years on this earth when I will miss my first born son. That is huge, but I will turn my gaze toward heaven and use my feet to walk a step at a time to fulfill the life and calling Father has for me. I will feel joy but sometimes it will simply be an act of will.
Delivered by Josh at Ben’s Thanksgiving Service
It was only two years ago I was standing with all Benjy’s family and friends as his best man in Brazil. I am very likely to go off into saying the same things today as I said back then especially as they both have the same theme. Back then he was starting a new life in Brazil with my wonderful sister-in-law, Dabi. And now he’s starting a new life in heaven with His creator.
Benjy has always been the classic older-brother, the mediator, the friend to all and if we did ever have a fight with him, a grudge could never last more than 5 minutes. He was too kind and forgiving for you to stay mad at him, he was very good at only getting angry at things that worth getting angry over.
I’ve always had some very particular memories that stick with me that show what kind of brother he was, like playing Lord of the Rings in the garden, and naturally being the youngest brother I was ALWAYS the orc, and ‘oh no there was no way I could kill the good guys’. But despite this Benjy would never let me feel like they didn’t want me out there playing with them. Or when he would let me live out the dream of every 8 year old and let me hang out with his friends – the big boys – even though I was literally the most annoying child on the planet. There’re still actually videos on the internet of us free-running with his friends. In fact, once we made a parkour video together and I just remember him telling me how proud he was of me for it; he sent it all over the internet and made me feel very professional. And when he bought the parts for us to build a computer together, he knew full well I had no idea what I was doing but still he’d say we built it together. He’d then explain to me what I’d done post-build.
On the topic of him and computers, i’m sure many of you remember Benjy had quite an affair at his old school with the computer network. So throughout his whole school career, Benjy didn’t receive a single detention or any other like-punishment. But, somehow he managed to get himself expelled from school for hacking into the school system with his friends and changing some settings eg removing the filters. But oh no, that’s not all. He then would edit the photos of particular teachers he wasn’t too keen on to have Gollum from the Lord of the Rings just creeping around in them in the background. So probably worth it in the end.
His humour and knowledge pool was where most of mine took inspiration from – from skateboarding, playing with lego and making parkour videos as children to discussing politics, theology and language etymology’s as young men. He has always been very much an inspiration.
But out of every topic we discussed, nothing excited Benjy more than discussing and trying to get his head around eternity. I remember as a 7 year old, we were at our friends house in Woolacombe and he came up to me and said ‘Josh how do you define time’. I think I remember the sound of my brain snapping in two at that point.
But obviously as we grew up, his thoughts became far more complex. He once spent something like an hour doing a diagram of his idea of heaven and when he explained it to me, I was just nodding saying ‘uh huh uh huh yup’ as everything he said just flew over my head. I still have no idea of how to comprehend eternity but it’s such a comfort knowing that he is within it as we speak. Now I know that saying, ‘oh he’s in a better place’ or ‘they’ll be loving it up there’ is often simply used as rhetoric to express someone’s death in a positive light, but the promise of the Bible gives us a hope so strong and certain about this that as 1 Corinthians 15:19 says, ‘If in Christ we only have hope in this life, we are of all people most to be pitied.’ So rather than just saying he’s in a better place, I can know with the strongest hope that he is in the best place with a fully restored body. Knowing how Benjy devoted his life not to his own plans but rather him and Dabi always listened to what God had planned for them, it brings me such joy to know that when he arrived at eternity’s shore, he was greeted with the verse ‘Well Done good and faithful servant’ as he was welcomed home. So I won’t finish by saying ‘Rest In Peace’ because Benjy isn’t resting; he’s living more than any of us ever have.
There is both so much to write and yet nothing to write. Tomorrow will be three weeks since Ben died. The days, in one sense, seem so normal, so brutally normal, and yet at times crushingly painful. I go about some of the usual activities, the everyday stuff of life – maybe it’s driving, shopping, putting the bins out – and every now and again, the fact of Ben’s death overwhelms me like a tidal wave and I have to turn my head and clamp my jaw. Other times, when I’m by myself, perhaps showering, and alone with my thoughts, I’ve found myself doubled up in agonised weeping.
Grief is such an intensely personal thing that it’s so often hard to know what to say when people ask how I am. How can it be described when I have this overpoweringly deep ache inside that’s beyond words? I hear the words ‘Ben’, ‘died’ and ‘dead’, and they can’t, they don’t, they shouldn’t belong together in one sentence. Losing a child is the one thing we don’t seem to be programmed for. I’ve not trodden this path before and I don’t have any map for it. The grief ‘process’ is not a tidy thing. The stages are messy and mixed – normality mixed with numbness, acceptance merged with denial, reality mixed with unreality; my mind seems constantly overtaken by this thing, this momentous thing that’s overtaken us.
Over the years, I’ve given away many copies of Nicholas Wolterstorff’s extraordinary book, Lament for a Son. It’s his diary account of the year after the death of his own son, aged 25. I now find myself dipping into it with a greater intensity. Part way through he writes words that now grab me afresh –
There’s a hole in the world now. In the place where he was, there’s now just nothing. A center, like no other, of memory and hope and knowledge and affection which once inhabited this earth is gone. Only a gap remains. A perspective on this world unique in this world which once moved about within this world has been rubbed out. Only a void is left. There’s nobody now who saw just what he saw, knows what he knew, remembers what he remembered, loves what he loved. A person, an irreplaceable person, is gone. Never again will anyone apprehend the world quite the way he did. Never again will anyone inhabit the world the way he did. Questions I have can never now get answers. The world is emptier. My son is gone. Only a hole remains, a void, a gap, never to be filled.
And yet for all this, paradoxically, I’ve still found the occasional quiet, still place. Where times of personal prayer seem difficult, sitting in silence seems to bring some measure of peace. Being held by Father. Aware of the effect of others praying for us. Occasionally as Catherine and I exchange a glance across the room, or quietly lie holding each other, heads on our pillows, we share a few words, even a simple prayer, or we simply look into each other’s eyes…and we know a strength. We’ve been buoyed by some wonderful friends who’ve dropped everything to be with us. Our old friend, Michael – Ben’s Godfather – coming from New Zealand for five days. Our dear friend Hélène, who took over the running of our home for some days to give us space to just ‘be’. So many good friends and family from far and wide who travelled to be at Ben’s Thanksgiving Service and since, to say nothing of the cards, letters and flowers that have arrived. The strengthening effect from all this has been tangible. (For those not able to be at the service, the Order of Service is included below)
At Ben’s burial in Alphington, Exeter, last Tuesday – a quiet gathering with family and a couple of friends – I was conscious of a peace as I sung the Lord’s Prayer in Maori, holding Catherine’s hand and aware of Dabi, then aware of the tears of one of Ben’s brothers dropping to the ground in full flow as he held onto his mother. It was St Augustine who wrote 1600 years ago –
“The tears…steamed down, and I let them flow as freely as they would, making of them a pillow for my heart. On them it rested” (Confessions IX, 12)
There is a peace being discovered. I know it’s Father quietening us with His love.
Just two days after the burial, and the day we said goodbye to my parents as they returned to NZ, Catherine and I visited my oncologist to be told that the tumour on my lung has shrunk by one third, and other smaller lesions present in other places in my body remain unchanged. We couldn’t quite grasp it. That news came a day after an unexpected phone call from our insurer saying that my illness policy was being backdated twelve years to the time of my original (and apparently, back then, less serious) melanoma diagnosis in 2002 and was now going to pay out enough for us to be mortgage-free in our intended new home.
With both these pieces of good news, evidences of God’s goodness, my mind confronts me with the question, “If these, why not Ben also?” But my heart quietly mediates, not with an answer, but a response, “Remember what God said, ‘Behold I am making all things new’…there is the Day coming when it’ll all be alright, when it’ll all become clear”. It all serves to remind me that Father weaves the golden threads with the dark ones as He works all things together for good and that God who in Christ suffered for us on the cross, and who took the sting out of death for those who love and trust Him, walks with us in all things.
Ben’s Service of Thanksgiving…click to enlarge
Delivered at his Service of Thanksgiving, Friday 8th May
I still clearly remember the day in Timaru, back in our native New Zealand, the day Ben was born. On my way home from the hospital, where I’d earlier laid this not-so-small 9lb 7oz baby on my chest, I had to stop the car and weep as the enormity of it all swept over me. And now, here I am, weeping again, for my precious first born, for Ben.
But it’s been an amazing life. And I want to invite you for a few moments to imagine you’re walking with me around a gallery – a gallery with pictures on the wall, an exhibition. But in this case, they’re pictures, snapshots from Ben’s life.
As we come into the main exhibition hall, there’s one taken when we lived in Auckland. He was about three years old, and on a swing I’d made out of an old tyre, with his small friend Christopher.
“I’m on a rocket”, Ben is saying, “and I’m going to the moon, I’m flying fast”.
“No”, Christopher said, “you’re on a swing”.
Ben was always one with huge imagination and creativity – we’ve got paintings at home by him; he was a dreamer and visionary who saw and imagined things we don’t always see...you can see an example alongside here of a vision of eternity he tried to capture on paper some years ago (click on them to enlarge)
But then we move along the wall in the exhibition hall, and here’s a picture of Ben, Macbook on his lap, iPad next to him, iPhone alongside, the very same Ben who said to me in 2008 (with a twinkle in his eye) as I went off to buy a new laptop, “Dad, if you come back with anything except a Macbook, I’ll disown you”. It’s the same Ben who then had, as his first and only occupation after graduation, the job of a translator for a software firm in Brazil. He loved his technology, his gadgets. But also in the picture on the gallery wall, he’s showing someone else how to do something. Always there for others. But his techie passion did though get him into trouble at one point at his first secondary school, when he went a little further than he should have done, hacking into the school system, something that led gentle, ever kind Ben to be asked to leave. Everyone was shocked…! But Ben dealt with it, and we all learned to smile about it, and Ben then, before he was married (and with a real sense of repentance), sought to put it all right, I’m sure motivated by his love for Christ.
But then, as we move out of the main exhibition hall, we move up the stairs into the World Room, the international room. And there on the wall is a picture of Ben, passport in one hand, globe in the other. For those who knew him well, you can’t have met anyone who suffered from ‘wanderlust’ more than him! Always wanting to be somewhere new. His globe at home has red sticky dots all over it for the places he’d been, or even just stopped over, memorable trips being his 24hr jaunts to France with friends from Plymouth: numbers of times back to New Zealand, twice unaccompanied; a long camping road trip with me and Tom to Portugal. Then short one or two day visits to Ireland, to Germany, and to Spain with university friends, and of course his beloved Brazil with three extended visits before settling there.
But there, alongside that picture with the passport, is one with Ben holding a foreign phrase book. However, it seems he didn’t really need it too much. Maybe it all sprung from his unusual ability to speak backwards, (where he was able to completely reverse sentences he heard, letters included), but he discovered, as he was leaving school, a passion for languages. And maybe it was helped along by a certain young lady from Brazil he met on Twitter, but within a short time he was speaking Portuguese…and then Spanish. In fact, his love for languages turned him into a bit of a grammar-policeman at home, and saw him writing a letter to his grandfather in Latin. But the picture that’s right alongside side that one though is a wedding photo – there he is with beautiful Gabriela, the love of his life, his soul-mate, his precious Dabi, who in these last few weeks has always brought a broad smile to his face whenever she walked into his room at the Mardon Centre…Dabi, who’s now so badly hurting…and we just give you so much love, Dabi, for all the happiness and joy you brought him.
Then we come into the Memory Lane Room in the Gallery. And there’s a picture of Ben aged five, holding the end of a hose pipe up to his mouth. It was a day in Christchurch in 1996. From inside my study, I heard this young but firm, clear voice outside in the garden. And looking out, I saw Ben, speaking into the hosepipe as if it were a microphone, other hand gesturing towards the trees above, “You birds, you better believe in Jesus. He loves you. You need to say sorry for the wrong things you’ve done and follow him.”
At the time I had a combination of reactions such as ‘poor preacher’s kid’ and ‘how funny’, but since then, watching him grow and observing the man he became, with such a heart for God and a heart for mission, I realise that God was at work in him even back then preparing him for communicating the message of the cross, not to birds, but into foreign places.
But this picture is joined to another picture alongside it, and that picture is of Ben only three years ago…I’m standing next to him at his church in Plymouth, with a bible alongside him, and his hands raised high above his head in worship, expressing that passion for God, for Christ… passionate and praying for others to come to know his Saviour… working out that call that God had placed on his life, even from those many years before – even in his relatively short life – that call to make Jesus known. Only last year he sent me a long email, describing a dream he’d had of him straddling a wide river, standing tall over it, helping others across to the other side, helping others to know Christ. And I sense he’s kind of doing it again today as we remember his life.
But then the final picture, an actual photograph taken on a home visit just eight weeks ago, surrounded by all but one of his siblings, with Catherine and me. Ben who was so loved, respected and looked up to by Simeon, by Tom, by Josh, by Lydia – Ben who loved us, who resigned his job, his life in Brazil, and with Dabi at his side, came back here to be with us because of my health, not knowing he was coming home to die, coming home before he went to his greater and most perfect home. At home with Jesus.
For us, it’s the most heartbreaking pain, but paradoxically also a deep peace. He’s there where he longed sometime to be. Safely there all because of Jesus who said, “I am the resurrection and the life. Those who believe in me, even though they die, will live. And everyone who lives and believes in me will never die.”
I’m so thankful to Father for the gift of Benjy – my son, my friend and my brother in Christ.
All are invited to join us as we remember and celebrate Ben’s life and give thanks to his Saviour for all the grace Ben received and for his 23 years of living life to the full.
You are invited to wear cheerful clothing. A Devon cream tea will be served after the service.
A private family burial will take place early in the following week.
Belmont Chapel has full facilities. For those travelling from a distance, there will be light refreshments available before the service. The address is Western Way, Exeter EX1 2DB. There is a large public ‘Pay & Display’ carpark behind Belmont Chapel. For a map on how to find it, please click here.
During the late afternoon, part way through Josh’s 18th birthday and just as we were arriving to visit Ben, he suffered a seizure and went into cardiac arrest. After a brief time working on him in the Mardon Centre, the nurses and paramedics rushed him round the corner to A&E, where after a further time of attempted resuscitation, they could do no more. Somewhere in the midst of all the activity, he slipped away…home.
We are heartbroken beyond words to describe. It all seems horribly unreal. The waves of grief and an awful numbness have moved in as we gasp and heave in agony for our wonderful firstborn, an amazing and inspirational big brother and, for Dabi, a precious soul mate.
Only a few days ago, Ben had spoken with us about the possibility of this happening. We’d asked him how he felt about it and he expressed so clearly his peace about dying. He and I had only 24hrs before read through the words he’d written on the source of his hope here on the blog in November. As many wonderful friends gathered at the hospital with us in the hours after he died, we all took hands and prayed. Ben would have been among the first to have said, “Amen”.
Thanks for the many, many messages that have started pouring in. The road ahead is going to be wracked with grief and tears. But your love, care and prayer is wonderful.
We continue to live in something of a twilight zone with Ben. Since I posted here last, he has had at least three small seizures – one, as I was pushing him in a wheelchair around the grounds at the Mardon Centre, another as Simeon and I, with one of the nurses, walked him back to his room after a meal, and the third, just yesterday as he was sitting at the meal table and then back on his bed. Strangely, he remains entirely conscious during each one of them. During the wheelchair incident, he was able to tell me and his uncle to push his straitening body back into the chair and to take his flailing arms and press them onto his stomach. As soon as we’d done that, it stopped – he had no control physically, but retained his faculties to instruct us. It’s all so unlike any epilepsy I’ve ever encountered and it’s a continuing reason why the Neurology team are scratching their heads. It’s so hard to evaluate how he’s ultimately doing when you’re so closely involved, but we feel it’s all a gradual cognitive decline we’re seeing rather than improvement or even simply flat-lining. Both Catherine and I find him very easily and increasingly confused in both conversation and recent memory, although some days he can present well. A mother’s love for her child is unique, undiminishing, and Catherine has found herself in tears more regularly over these last few days as she struggles with the question, “Will we ever get him back again?”. He was whisked up to Taunton on Monday finally for a Positron Emission Tomography (PET) scan, a latest generation scanner which provides more information than CT or MRI scans. We await the results, hopefully in the next few days.
While we wait for that, we are now waiting also on our mortgage lender to give us the thumbs up for the new property. Having been told weeks ago that we had been given permission to port our existing mortgage across to the new house, we were then asked to fill in a fresh set of application papers. Those have now gone to the underwriters. We’re not sure how much of a formality this is. Even though our income is dropping significantly, we hope the fact that the ‘loan to value‘ ratio on the new property is drastically decreasing will be a positive incentive to the lender to give us the thumbs up. In my occasionally wobbly moments, Catherine is always the one to remind me that Father has taken us thus far and so we won’t be left stranded at the last hurdle. We remain in awe of the generosity of so many around us who have and are making all this even possible.
I remain in steady health (if I can say that knowing there’s a tumour in my chest) although both yesterday afternoon and today I’ve been feeling somewhat weaker than usual. These patches, I’ve come to recognise, tend to come and go, but remind me that we’ve made the right decision to opt for early retirement as I just don’t have the energy that I once had. My next CT scan takes place on the 6th May and will show crucially how things are as I progress. Having finally received a confirmation from the Church of England Pensions Board that I can take early retirement on grounds of ill health, I wrote my letter of resignation to +Robert, the Bishop of Exeter last week saying part way through…
Whilst it is a decision that I never expected to make at the age of 48, I am very peaceful about it and look forward to future and different ways of serving Christ as life, health and the Holy Spirit allow. To live is Christ, and to die is gain!
Whilst I’ll miss seeing many dear people in my parishes and miss living in wonderful Rockbeare village, as we journey towards this next phase in our lives, we’re increasingly filled with excitement about the ongoing and more informal ministry possibilities it may open up. I’ve long enjoyed getting alongside and encouraging other church leaders, as well as mentoring and discipling people to help them in their own Christian growth. I’ve never had as much time as I would have liked to give to these important things over the years, what with weekly rounds of services to prepare, PCCs and church meetings to lead and follow up, telephone calls to return, churchyards to sort, rotas to watch…and so on. But now, it’s more possible. A friend recently told me of someone who’d also taken ill-health early retirement and had found that it had ‘refreshed his ministry’. I’m finding that with this diagnosis and with Ben’s illness, opportunities to share Christ have increased hugely as people want to know how we’re coping. With my illness, I feel an increasing call to stand at the gates of death and testify to what I believe, know and experience, finding that there are so many people around, both in Church and not, who have little confidence – certainly no excitement and joyful anticipation – in facing their own life’s end. They wonder if they’ve been good enough. If they’ve got the pass mark. The trouble is that none of us can ever be good enough. If I can encourage them that (by simple repentance and faith in the Saviour who loved them and gave Himself for them) they can be washed clean as snow, that they can come to know Him for themselves, that they can have utter assurance through the personal indwelling of the Holy Spirit and know then an eternal security, even if it’s for just one person, then this illness has a wonderful eternal purpose which makes me sing to Christ Jesus with such joy. Whether He takes me home sooner or later, I really don’t know. But as I continue to live – and in many ways, plan to live, God willing – then it’s Christ I’ll serve.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-17)
There are times in our lives when we find ourselves speechless, even moved to tears. It might be seeing an immensely beautiful scene. I often hanker after my favourite spot, just below the top of the Port Hills near my home city of Christchurch, New Zealand. On a clear, still and sunny day I love to just sit on ‘my’ park bench and gaze in awe, speechless, looking down onto the blues and greys of Lyttleton Harbour and the bays opposite, with Mt Herbert providing a stunning backdrop. I always sit in silence, over-awed. Or the birth of a child. When Ben was born in 1991 in Timaru, I was speechless; the tears then caught up with me as I drove home and had to pull my old Citroen GS over to the side of the road and let them flow.
We never forget overwhelming moments such as these.
This week has had more than a few of them. In the face of seemingly impossible or, in the least, extraordinary odds, we’ve seen the most amazing thing happen. Last week here on the blog, I gingerly (and admittedly somewhat hesitatingly) raised the issue of the large and unexpected gap in our funding to buy our house. We did so encouraged by friends. But we did so encouraged by events 48hrs earlier when Catherine, hitting rock bottom, prayed, “Lord, if this house purchase is right, please by the end of the day, may we be offered £10,000”. A phone call came that night offering that very amount as a gift. And then came a message via Facebook from old friends the same evening, prompting us to check our bank account the next day. Exactly the same amount again. And since publishing the blog last week, not only has the entire amount been given, but then some more (where people have been happy) towards settling-in costs and to help reduce the mortgage burden and income issue for us on a pension and teaching assistant’s wage, or more particularly, for Catherine and the children in the times to come. We are simply staggered and overwhelmed. During these last few days as it’s been happening, we have known tears of amazement together, looks of astonishment as a family and a big sense of being loved – loved by Father and loved by his people, his family, our friends & family. As I’ve written to various folk who’ve given, I’ve often included words of St Paul –
“And my God will meet all your needs according to the riches of his glory in Christ Jesus” (Philippians 4:19)
…that each and every person, both those who’ve passed us monetary gifts, but also those who’ve supported, loved and cared for us in a thousand different ways, has been a part of Father’s heavenly supply chain. We’re stunned. In the New Testament, we read “Carry each other’s burdens, and in this way you will fulfil the law of Christ” (Galatians 6:2). Quite truly, we‘ve seen these words come alive. Thankyou.
Ben has – once again – had a rough week. As well as some cognitive decline, he’s had two or three ‘episodes’ over these last six days – low level seizure-type occurrences, but events where he’s remained conscious throughout. He had one while he was at home on Easter Day afternoon. Crumpling into a sitting position on the bathroom floor after he started to shake, he eventually got up onto his feet with our help, but as he stood, hugging hold of me for extra support, he started to shake uncontrollably, saying, “I can’t make it stop” with such anxiety and no small amount of fear. After quickly borrowing a wheel chair from the neighboring Rest Home, we got him out into the car and back to the Rehab Centre.
We continue to await news as to whether he can be transferred up to London sooner or later. In the meantime however, he’s had the great opportunity of being enrolled in a wide-ranging “Deciphering Developmental Disorders” (DDD) study which brings together doctors from across the British National Health Service Regional Genetics Services as well as scientists from the Wellcome Trust Sanger Institute in Cambridge, a charitably funded research institute which played a world-leading role in sequencing (reading) the human genome. Alongside this, Catherine, Ben and I have had samples taken to allow him to be tested under the epilepsy gene panel, a DNA-based test that sequences many genes implicated in rare forms of epilepsy – all at once rather than individually. We’ve been told that this is a technology which has only been available in the last year or two using something called ‘next generation sequencing’. The consultant says, “All of these genes are essentially implicated in rare forms of childhood epilepsy, hence we should not raise our hopes of a positive finding in Ben, except that some of these genes are occasionally implicated in later onset conditions as well as childhood forms. If nothing is found then the DDD Project is a good back-up because they (Cambridge, Sanger Centre) will read through all of Ben’s coding DNA. Of course, neither of these tests/approaches will turn up anything if Ben’s condition has nothing to do with his DNA make-up..”
The scriptures regularly speak about God multiplying blessings on His people. We simply have to hold onto the Easter reality of the Risen Jesus and be reminded of what we’ve experienced regarding our house this week, letting it bring us all hope and encouragement in Ben’s situation.
“The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.” (Lamentations 3:22-23)
Happy Easter, friends and family.
Christ is Risen! As I face the future, I have absolute certainty because…
“My hope is built on nothing less
Than Jesus Christ, my righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand,
All other ground is sinking sand.”
Because He died in our place, taking your penalty and mine for all our failures, muck and shortcomings, and because He rose from the grave, proving He’d conquered it, He removed our greatest threat. We can, repenting and placing the weight of our life’s trust on Him, now rise to eternal life too.
Everything else fades to grey. Nothing else in life can be more important.
Christ is Risen! Joy and Peace.
It was great to meet up with a couple of friends over an early 6.45am cooked breakfast a few days ago to talk, to listen to each other’s needs and pray together. As we talked, we gently challenged each other about what is the ‘sofa for my soul’ – the thing it mistakenly thinks is going to satisfy it – and we encouraged each other to make Jesus Christ the one on whom we rest, through all the ups and downs. I really needed that reminder as this week has thrown up a few challenges.
Among the ‘ups’, we’ve had some good and notable things happen – no. 4 son Josh passed his theory test for his driving license and no. 3 son Tom has now arrived home from Cardiff Uni for the Easter break. This week we’ve also finally cleared and moved everything out of our flat in Crediton ahead of its sale and completion. And while I’d love to report good news about Ben, his journey shows no sign of improvement – if anything, to our untrained eye, only mild deterioration. Yesterday afternoon, he had another slight ‘episode’ while in a physiotherapy session and by the time I saw him in the early evening, his speech was confused and he was making little sense. Only days before, trying to play a game of dominoes with him proved to be painful. We’d been told that it’s good to use some of our visiting time playing games, puzzles etc. to help stimulate his recovery. To say the game was a struggle for him would be an understatement. Not only could he not manage the normal ‘dotted’ dominoes, even playing a picture version, despite an immense amount of effort on his part, was near nigh impossible. We came away feeling crestfallen. We’ve known he had a long way to go, but the simple act of playing a game showed us something of the enormous distance yet to cover. Our visit had happened just 24hrs after a meeting with his neurologist. The neurology team continue to scratch their heads and have more questions than answers regarding Ben’s condition. They’re now considering referring him to the National Hospital for Neurology and Neurosurgery in London. We pray on, especially thankful for all who are joining us each week in prayer and fasting.
If Ben’s journey doesn’t get any easier, neither apparently does our house situation. If you’ve been reading the last couple of blog posts, you’ll be aware that we’ve been facing the mountainous question of buying a family home. Only a few weeks ago, we had never considered the possibility of being able to purchase something suitable as we simply couldn’t afford to increase the mortgage (still with 17 yrs to run) that we have on our small flat. However, we were then offered the possibility of a substantial gift of money towards the purchase of a property. Alongside this, we received a small number of gifts from friends who, not knowing our emerging thoughts, provided us with enough to make us think that this was the right thing to do. So, we proceeded to go firm on an offer we’d made on what seemed the right house, one that could house us all, but also with a downstairs bedroom suitable for me or for Ben and Dabi with our respective and increasing health needs. Numbers of friends around the world have in the last fortnight wonderfully provided us with just under £30,000. We’ve been amazed and are so thankful. However, we have recently learned that the substantial amount of finance on which we were relying is now no longer available, suddenly leaving us with a deficit of £60,000 and somewhat knocking the wind out of our sails.
I have agonised over placing this need of ours onto the blog, but having shared my angst with a number of close friends and family, I’ve been persuaded to do so…mainly because I so deeply love my family and, knowing what a traumatic time they’ve all had to face, want to leave them provided with suitable housing for a time, sooner or later, when I’m no longer with them. If anyone would like to prayerfully (or just thoughtfully, if you’re not the praying type) consider whether you could help us cross this enormous mountain, we would be so grateful to hear from you and provide you with information as to how you could assist. You can email me at firstname.lastname@example.org
As we walk through this week leading to Good Friday and Easter Sunday, we’re so thankful for the One who emptied himself of all but love for our sakes, so we could, trusting in Him, truly live. “It is finished”, he cried victoriously from the cross as he died. “He is Risen”, spoke the angel from an empty tomb. We hold on to Him, trusting.
As I was driving home to our flat on Thursday evening, having said goodbye to Jeremy at the pub in Exeter (because my parents were going to drop him at the Vicarage on their way home) and knowing my son lay sedated, tubed and very ill in ICU, this thought crossed my mind, “Can it get any worse?” Then as quickly as it came it was dismissed. Of course it can! Have I got a relative either being held hostage by ISIS or one who has left this country to either fight for or against them? Am I a Christian or another ethnic group being persecuted by ISIS? Am I imprisoned for my beliefs or is my husband/son being imprisoned for theirs? A resounding “no”.
People say, “I don’t know how you cope, Catherine.” It is by keeping everything in perspective that we can walk the difficult path chosen for us. I have (at the moment) a warm, dry and comfortable home. Yes, my husband has a terminal illness but he loves me and we are still sharing life together. Whatever happens, because of Jesus’ death and sacrifice, I know where he will ultimately be and for the same reason, I will be there too one day. Not because of anything I have done but because of Jesus’ grace and mercy. If Jeremy goes to be with Father, I will be ok. Father will look after me and most importantly, have a ministry for me. I have wanted to foster for many years; Jeremy feels we have done our bit raising our five. This is one of the plans I have if I am on my own. We have chosen a house carefully in order for this to be a possibility; I want our new home to bless many.
My son is seriously sick, yes. We do not know what is wrong, yes. He is being wonderfully looked after in a facility we are just so blessed to have on our doorstep. God knows what is going on. Could it be the result of many praying and fasting last Monday that meant he had another two seizures on Thursday? It could be for a positive reason but nobody knows. What I do know, most assuredly, is that God does and is in control.
As I think back on the last (almost) six months, I know we have been through the ringer. I am tired and have not slept well in months; every time I visit Ben I am reminded of the loss and pain his situation brings. I have shed many tears in recent times but the best news is that God has not changed. In all of this pain and uncertainty, God has not changed. He is who he has always been. He has always been in control, he still is. He knows what the future holds and always has done. He still loves me with an everlasting (that means for ever!) love and always will. He has a unique plan for my life, a role for me to play and fufill and nothing, not even death or sickness, can stop that. Praise you Father, thank you so much.
For the past eight years Jeremy and I have been asking big questions about life. Did you know that his terminal diagnosis has brought us so much blessing? We are both excited and scared in equal measure. Sometimes one of these tips the balance. However, I believe God wants to use our situation to overwhelmingly bless and encourage us. We have for such a long time tried to marry up a working pattern where one works weekdays and terms and the other weekends and holidays. I wind down at the end of term for both Christmas and Easter – not so for Jeremy. Our new life will allow much more flexibility for us within the hours and requirements of my job. We will have evenings; I can be home by 4pm and Jeremy won’t be going out to some meeting or function. That is all exciting.
Can we make our budget stretch? We have never paid water rates or council tax at this level before. Our income is reducing significantly. These are all scary. BUT… God has shown us so many signs to encourage us. What are the chances of a conversation with the mother of a child in my class leading to a Saturday job in my favourite shoe shop, that also gives holiday opportunities too? Slim, I would have thought; six days later I had been offered such a job. God’s goodness most definitely. The house was found almost by chance as the criteria we were looking for wasn’t how this house was advertised. Again God moves and we sold our flat in five days. We discovered our mortgage, taken out three years ago, is portable; we had no idea. We are trusting God that he will provide the finance and bring it from all its different sources together on the correct day so we can complete the transaction. This is taking a lot of faith but I am totally trusting that God will deliver on this one when his timing is right. We also are waiting to hear if my contract, that currently runs out in July, is going to be extended. If not we have to trust for a new job for me.
So can it get any worse than this? The bottom of the pit is a long way off yet and even if we did get down there, right to the bottom, there is no pit so deep that God’s love and presence is not already there. As the Psalmist says, there is nowhere we can go that is far from him. We have just so much to be thankful for. God has so blessed us these past few months. We have had so many generous offers of money, food, prayer and love. We realise we have fantastic friends the world over and nothing, not anything, can separate us from the love of God in Jesus Christ and that even in the seemingly hardest times, when we can not walk anymore, God carries us. See Footprints in the Sand.
In my occasional teaching and preaching on heaven over the years, I’ve regularly identified from the scriptures that a wonderful characteristic the friend of Jesus can one day look forward to is the unending happiness and everlasting pleasure that’s described in the Bible’s scattered ‘jigsaw piece’ references to heaven. Unending happiness and lasting pleasure. We can hardly perceive what that looks like from where we all stand at the moment because normal life, whilst it provides times of happiness and pleasure, often sees the good times followed by things that, in the least, temper or steal our happiness, our pleasure – a relationship becomes difficult, you lose your job, our ‘toys’ lose their shine, break or are superseded by a better model, the car breaks down, someone precious to you dies, your children ‘sow their wild oats’ leaving you feeling heartbroken, you find a lump on your body and think….the list can go on and on.
But for the one who’s placed the weight of their life’s trust on the risen Jesus Christ, they’ll find heaven has nothing that steals the perfect away. It’s the place, in Christ’s immediate presence, where that old order of things that we experience in this life, has gone. Eternal bliss – not eternal snoozing – and pleasure in the face-to-face presence with the Saviour. It’s so inspiring. It’s something that can keep our heads lifted up even in the face of life’s often chewy, painful times. The hope of glory.
The normal ‘human life’ experience of happiness, however, has very much been ours in the last few days. Let me tell the story.
I know I’ve been there before, but earlier this week until Wednesday, I really thought I was starting on a downhill slide with my melanoma. My temperature started rising and falling, my chest/lung area were feeling increasingly tight and uncomfortable, a cough which had only been intermittent, had become more persistent and troubling. It was a rough few days which left me listless and largely wanting to lie down all the time. With its effects continuing for more than 36hrs, on Wednesday I rang the hospital and, describing the symptoms, was ordered to come in for a check up. After an X-ray, blood and a battery of other tests, I was told there was nothing untoward going on. If anything, it was considered to be a prolonged or late reaction to the ipilimumab. I was able to find out however, 24hrs ahead of my official appointment for CT scan results, that both the X-ray and the scan indicated no change in my tumour – no growth or proliferation. Seeing my doctor Ayman Nassar again on Thursday for the official results, he felt it to be a positive response to the drug. Yes, he’d like to see the tumour shrink, but finding it unchanged, felt indications are that it’s being held at bay. Bearing in mind that it’s only 20% of people who respond to ipilimumab and have their lives extended for a time, his exact words to me were, ‘It’s not the usual response we see, but it is stable for the second month in the same manner’. A friend of mine commenting after the previous scan showed the same result, said, ‘Hhhmm, this sounds like something of God’. When I mentioned this to Ayman, he smiled and reacted in recognition.
It’s been good news for us, and allowed a peace and sense of relief to fall across the family again.
But, as I’ve said, happiness and pleasure in this life are so often imperfect and not unending. Continuing our ‘normal life is often stranger than fiction’ existence, we heard early Thursday afternoon, just as I was about to drive in for my results, that our son Ben had had another series of seizures. Not able to be controlled by medication at the Neuro Rehab Centre, the ambulance was called and, given a further lack of response to their meds, Ben was taken over to main hospital and was placed back on the ICU. Cast back into the raw emotions of the Intensive Care waiting room, we found ourselves dealing with a clawing sense of déjà vu, recognising the familiarity of the place from Ben’s stay there in late December/January. He was placed in a side room where he was initially sedated, unconscious and on a ventilator. STOP PRESS I’ve just phoned the ward this morning (Friday) and the phone was passed to…Ben. Such a surprise for me. We had a quick chat. He’s feeling very tired, a little confused, quite groggy, but OK. All tubes have been removed and they’re hoping to send him back to the Mardon Neuro Rehab Centre today.
I suppose the next few days will indicate whether all that’s happened yesterday is going to impede his ‘progress’ or not. As I think about all this though, I can’t ignore the fact that on Monday, so many people around the world joined us in a day of Prayer and Fasting for Ben. Perhaps we can see this latest incident as a response, a ‘flushing out’, an unearthing of what’s really going on, something that may contribute to either a full diagnosis and recovery…..or simply just a recovery. We watch and pray and thank those who’ve said they’re standing with us in prayer.
We continue to feel for our daughter-in-law, Dabi who’s had such a tough path to walk over these past three months – in a strange land and away from her family and natural support systems. We’re so grateful to those who’ve befriended her, accommodated her near the hospital and been Jesus’ arms around her. Her immigration application seems to have been met with a positive response as she’s now been invited by a particular special department of the Visa & Immigration service to put in a specific application. Being handled by one man in the department who’s given us his direct line contact details, it feels like things are going in the right direction.
Regarding our house buying ahead of my now early retirement, we’ve been so grateful for what seems to be a snowball slowly starting to roll as a small number of friends have both humbled and amazed us, sending gifts towards the shortfall in our intended house purchase, particularly after a major source of help may have closed down. With me feeling so unwell this week, the weight of it all, particularly when our solicitor wants to know all the financial information, has almost been more than Catherine and I could bear, even to the point of despair, so these reminders of the love and care of others has refreshed us so much. All things being equal, and so long as funds allow, the intended purchase date is set for early May.
Thanks for all the messages of support either through comments here on the blog or the many emails and cards to me, Catherine and our family directly. They all mean so much. While many might look at us and sneer saying, “Where is your God?”, I’m encouraged by the answer to that very question found in Psalm 42, “…my enemies sneer and ask, “Where is your God?” Why am I discouraged? Why am I restless? I trust you! And I will praise you again because you help me, and you are my God.”
We keep our heads lifted up.
Part way through Psalm 42 it reads, “…all your waves and breakers have swept over me”. There are times when those words feel like ours, and this week has been one of them with deep troughs like an open ocean. With what seems like one difficulty after another to face, we’re feeling pretty tired and very much hoping that there’s not too much more round the corner.
Sitting with Ben last week, he thumped his head down on his pillow and exhaled in tired tones, “I’m so bored with all this”. He’s reached a point – almost a tipping point – where he’s become so frustrated and weary with his perceived lack of progress that it’s getting him down and robbing him of the willpower to keep going. Whilst he can be quite lucid and clear, confusion appears regularly in his speech and his thought processes. His ability to walk and do many normal things seems both to him and us to have flat-lined. It leaves us all, Ben particularly, feeling at times overwhelmed and anxious as to both where it’s all leading and how much progress we should expect. Even on Monday, taking him from the rehabilitation centre to the main hospital for a specialist appointment and an MRI scan, it was a wheelchair all the way from when we arrived in the hospital carpark. The prospect of standing up out of the car and swivelling into the wheelchair was almost too much for him. I can’t help but compare him to the younger Ben who loved practicing ‘parkour’, urban free-running, jumping across walls, rolling over obstacles and climbing nimbly over fences. Having now got to this point of stalling improvement, we want to invite as many as possible all around the world to join with us in a weekly day of Prayer and Fasting on Mondays for the next four weeks (or whatever day suits you) for Ben. It’s something you can do from where you are and as you go about your day, either skipping a meal or two and using it as a time for prayer and particular focus, or spending regular spots each hour, lifting him before Father and asking for some breakthrough. We simply feel that something needs to “budge” in his situation, and would be so grateful and encouraged to know that a concert of prayer to Father in Jesus’ name, was going up for him, for us.
While we live with the ongoing apparent lack of progress in Ben’s situation, our plea to the Home Office for a change in Dabi’s immigration status is now at a crucial point. Having sent off a pack of letters, reports and supporting statements a week ago via special delivery, we heard on Monday morning from London that they had not arrived even after seven days. I processed the news feeling quite anodyne about it, but possibly because there was a deeper mental process going on causing a strange combination of despair and steely resolve, almost a “bring it on…what’s one more thing to deal with?” going on in my head. To add to it, the message about the missing post came just after Simeon had received some very difficult information in that morning’s mail which open up some big issues that’ll need my involvement to help him sort. Within a short time however, the message came from London that the missing post regarding Dabi had in fact just arrived. It’s now been sent to the Home Secretary and will be considered by the relevant official as a matter of urgency. We simply hope that with Ben so unwell and needing his wife with him, there’ll be some compassion shown to her, to them both.
Living with the implications of early retirement has hit us in different ways in these last few days as we variously feel at peace about it and struggle to make the figures work financially both for our house purchase specifically and ongoing living costs. They often say that buying and selling homes is a stressful thing. Mix it with an unexpected retirement, and we don’t wonder why we have a cocktail of emotions that come and go. Wanting to explore further options, we’re seeing the Church of England Pensions Board Housing Officer later today, but even that doesn’t present any easy alternatives. It sent me on something of a downward spiral earlier in the week. “How is this going to work?”, I thought. A benefit I thought I’d be entitled to (equivalent to the state pension which is only payable on retirement at 67) I now discover is not available as it’s means tested – my early-retirement church pension would wipe it. However, I’ve always seen ‘retirement’ for the Christian (ordained or lay) as being spelt ‘re-tyre-ment’ – a new set of tyres and on a new track, still serving Jesus Christ, but in different spheres. Life serving Jesus for the Christian never finishes, and that while my health allows and I’m able, I can hopefully take on some lighter ministry and other things. Catherine’s already got her eye on the possibility of a Saturday job in her favourite shoe shop in Exeter, to go alongside her full-time weekly Teaching Assistant role. It’s all been a strange thing…when you know something seems clearly to be the right thing to do before God, and you even feel you’ve been led to do it, so there are still those moments when we struggle with the implications. I guess I see that in the prayer of Jesus in the Garden of Gethsemane as he struggled with what was to come in the hours ahead on the cross…‘Father, if you are willing, take this cup from me; yet not my will, but yours be done.’ There, Jesus’ humanity was struggling with the implications of where his divine nature, where Father, was leading him…just in the same way that any follower of Jesus can struggle in lesser things with the call and leading of God, despite knowing it’s the right path. Catherine has been such a rock to me, so much so that when I was at my lowest this week, she picked me up, encouraged me and on Monday evening as we sat on the sofa together, prayed for us both. But it all came at the end of a few days when I’d been on the verge of going back to the hospital due to some signs of a possible change in my condition – signs which seem now to have eased – but signs that regularly have me wondering if I’m standing on the equivalent of Mt Nebo. That was the mountain on which Moses stood as he looked across, beyond the Jordan, to what was to be his people’s new land – Canaan. But it was a place he himself would not enter, as he died before they entered it.
In the middle of this though, there have been some wonderful signs of life, of Father’s goodness and the future which continue to spring up. Last Saturday, Josh and I had a great day together exploring God’s call on his life as he and I spent time at Moorlands Christian Theology and Training College near Christchurch, Dorset for their Open Day. We both came back full of excitement and seeing a potential next step for him there. We met with some amazingly supportive staff who understood that Josh would perhaps come to them in September next year, but who also understood the implications of my illness on him and what it might mean for him in the future.
The previous day, it was wonderful to have two friends from Exmouth, Benedict and Ian – both pastors – come and spend part of the day with me, to pray for me and anoint me with oil. Ian, from one of the New Frontiers family of churches, wonderfully reminded me of the lavishness of Father’s goodness as he draped a towel over my shoulders and then poured – and I mean poured – a beaker full of oil over my head as he prayed for healing, for God’s anointing and blessing. No half measures. “Thou anointest my head with oil; my cup runneth over”. I sensed as they prayed, as the oil seeped through my hair, down behind my ears and over my face, that if I’d had a cup to collect it, it would have overflowed. “See what great love the Father has lavished on us, that we should be called children of God! And that is what we are!” (1 John 3:1)
On Thursday week, I receive the results of last week’s crucial CT scan. In the meantime, I journey on and even if breakers and waves do sweep over me, I know that my Redeemer lives and that He once stood on the earth and walked on the water. He one day will again stand upon the earth and continues to walk on the waters – the waters of my troubles and fears – and that keeping my eyes on Him, I’m prevented from going under, but more than that, we can know His peace.
Last week’s activity spike saw a fairly gentle and calm return to ‘normal’ within a couple of days. Ben remained on the High Dependency Ward back in the Royal Devon & Exeter Hospital for two days after his two strong seizures, but made such good progress that he was returned to the Mardon Neuro Rehab Centre by the middle of the week. He was so happy and grateful to get back to his room at Mardon as it’s feeling quite like home to him now. He’s felt incredibly tired since these recent seizures and spends a lot more time sleeping as his body is plainly catching up and healing. He choose not to come home for the day on Saturday, feeling too vulnerable and at risk of something happening. That feeling was confirmed as yesterday he had another bout of sickness which has both laid him out and left him feeling pretty weak. He loves having visitors, so if you know him and you’re able to get there, do try….visiting times are 4.30pm – 9.30pm daily.
My rashes and itchiness described last week, whilst possibly a side effect of the Ipilumumab’s interplay with my body, were considered more likely an allergic reaction to something. Driving into the hospital beforehand however, I was convinced in my mind it was the beginning of the end, but was reassured by the ward doctor that all seemed fine, and within 12hrs and with a dose of antihistamine, it had all cleared up. My sister Julia in Melbourne suggested that perhaps with my immune system living in such a heightened state, it meant that something I might have had a minor reaction to once, now manifests more severely. “Seemed sensible”, the rest of the family chimed in via WhatsApp, our ever-pinging group chat app on our smart phones. As my friend Dave kindly offered, “You just have to learn to be not such a drama queen!” It was good to have a laugh about it. However in the last few days, I’ve been feeling pretty ‘feak & weeble’ and over the weekend have developed signs of discomfort in my chest which have come and gone with the return of some fairly prolific night sweats again. Is this the sign of my tumour finally reacting to the drug and becoming inflamed, or something more? I just can’t hide from the feeling that things are moving along. And that’s unsettled Catherine and family around us, which causes me some agony. That, to be honest, is my ongoing source of pain in all this…seeing what it keeps causing in my darling ones. The crucial next CT scan takes place this Friday, but results aren’t returned until I meet with my oncologist two weeks later. Is it going to feel a long couple of weeks? Perhaps, but as I’ve often felt tangibly carried along as on eagles wings, so I’ve got a confidence that Father will continue to do so…and that for all of us.
But our big decision which was announced across my churches this last weekend is that, after some time considering the realities and possibilities, I will take early retirement on grounds of ill-health most probably effective at the end of April. It was done in consultation with my doctor and the Bishop of Exeter. It was partially my doctor’s unequivocal “absolutely!” that made it so clear, but also an increasing feeling that it would best serve the family’s needs as well as opening up new, but lighter ministry opportunities for me while or as I’m able. It does seem strange that at the age of 48 and after 20 years of stipendary ordained ministry to be doing this, but these are extraordinary circumstances. Plainly, it’s a decision which we’ve not taken lightly and I’m conscious of the pain of parting, leaving our village and church family in our parishes here, but it’s one about which ultimately we feel very peaceful. It’ll also allow for some clarity and planning for my colleague Mike (whose wife Rachel is facing not one but two major battles with cancers…read her blog here) and the diocese in considering a successor to help shoulder the heavy load currently being sustained since I’ve been on sick leave these last few months.
In the meantime, it presents us with the big issue of housing. As a large family, we’ve benefitted from some excellent church-owned vicarages over the last twenty years, but on retirement, all that goes. Whilst we do own a small 1.5 bedroom flat in the small Devon market town of Crediton, it’s tiny and only good for 2-3 or short stay accommodation. So, considering the future, we’ve started on the momentous task of house hunting, of doing our calculations and engaged in the breathtaking task of raising finances, trusting God as we seek to buy, for the first time, a family home that may or may not be a part of my own future. Already we’ve received three particular signs which have encouraged us to believe that we’re doing the right thing. Firstly, a dear woman approached us at a large city-wide service one night and through our conversation, encouraged Catherine and I to realise afresh that God saw and could supply the need and that she might,after some prayer, be of some assistance. Then secondly, a couple of days after taking the retirement decision, we received not only a gift from my previous church and from friends, but also a note through the post from a member of a former congregation of mine, sending greetings and love, and being reminded herself of God’s faithfulness shown to her both directly and through her late husband, felt prompted by God to send a gift to us and was therefore enclosing a cheque. The gift was a generous ‘seed’ amount of money, tangibly now showing us that Father would help supply what was needed for a family home. Catherine and I stood facing each other with eyes welling as we read both it and the cheque. Amazed. Speechless. Thankful. It was the apostle Paul who wrote, “And my God will supply every need of yours according to his riches in glory in Christ Jesus” (Philippians 4:19)
Thirdly, we put our flat on the market a week ago last Saturday. Five days later, we had an offer – full asking price. Again, we saw Father’s hand.
Understandably, Catherine is particularly keen that I’m a part of any purchase – that she can say I saw it, that I was there. So, still waiting to see how Father might supply what is lacking, yet proceeding sensing that we ought, we’ve viewed a few houses and, taking into account both the location of Catherine’s job in Crediton and Exeter College for Lydia next year, we’ve identified and viewed what we feel is the perfect one – a modest house, and one that has room enough for those who are still at home including Ben & Dabi, who’ll most likely need accommodation and support with us into the medium term and a downstairs bedroom should a time come when I need it.
As I listened to an amazing man last week speak about he and his young family’s work, living and sharing Christ among Muslim fishing communities in South-East Asia, he said so often it’s only when we’re at our wits end, God meets us there. I smiled and nodded my head in recognition. It was good though to be encouraged to keep realising it.
I’m sitting currently writing this at 2.50am suffering from an increasingly irritating case of itchiness over parts of my body and an area of rash on my arm and stomach. The itch is such that it’s keeping me awake. I can do nothing for it except scratch and I am going to have to head into hospital today to have myself examined for possible side effects – the first – of my treatment. I’m hoping that writing will help as a distraction. But I’m not sure how successful it’s proving to be.
It’s happening, however, less than 16 hours after Ben was re-admitted to the main hospital having suffered a couple of major seizures yesterday while firstly in a physiotherapy session then back in his room at the rehab centre…and this despite the fact that he is on the maximum dosage of anti-seizure medication. He’s had a few bouts of sickness and vomiting this week which may have unhelpfully removed some of the drug from his system, but we seem to have landed on a ‘snake’ and slid back a few places on the board. He was taken in an ambulance from the rehab centre and admitted to A&E where he was drugged, assessed and, after a CT scan, sent to the High Dependency Ward for further monitoring and tests. The scan proved clear and by last evening he was waking up when prompted, sometimes replying, sometimes not, and then falling back to sleep. On top of all this, big concern has been expressed by one of the consultants over his weight loss, which has up until this point received little attention.
But it’s happened during a further week of what has seemed to be like ‘snakes and ladders’ for him, me and us. Some days he shows signs of improvement, but other days it feels like he’s slipped. He’s been suffering from continuing shaking in his limbs and his ability to walk for any distance is extremely limited, often needing to sit down after only a few steps. But then, with his godfather Andrew visiting on Thursday, he appeared quite animated and well, and the two had a lively discussion about planes, computers etc, Ben adding a bit of humour along the way. Home with us however on Saturday, and with two old school friends visiting, he seemed to me to progressively deteriorate as the day went on, collapsing into a wheelchair as he returned to the Mardon Centre later.
Ben, Dabi, Catherine and I had met with consultant neurologist, Dr Harrower last Wednesday to discuss progress. It was a good meeting, but one which showed he has a long way to go….his forecast stay in Rehab was described as ‘months’. Positively, Tim Harrower explained that repeat scans had indicated progress. His latest scan showed that structurally his brain had ‘resolved’, and that the signal changes which cause seizures appeared more under control. However, he explained that so far there have been no positive results for any cause of his seizures. He is treating them as “idiopathic” (unknown cause) at the moment. Yesterday’s seizures and re-admission to the main hospital no doubt add further question marks to the mystery for the neurology team to solve. It’s left us all feeling quite wrung out and with few natural reserves to draw upon.
I had my own chewy moment late last week when a requested report on my condition arrived through the post. I’d asked for it to be written so it could be included to support our case with the Home Secretary for Dabi’s visa to be extended or altered. The report however was stark. Referring to our first meeting in October last year, my oncologist wrote, ‘…we also discussed the fact that the current median survival of patients diagnosed with metastatic melanoma is in the region of 8 months.” He went on, referring to my ipilumumab treatment, ‘although you have had no significant side effects so far, it remains possible that you could still develop immune related adverse effects of melanoma which, as we discussed, may be life threatening particularly if they affect organs such as the liver or the bowel. Current published data suggests that ipilumumab will produce a prolonged period of disease control in 20% of patients. He concluded, ‘In summary, therefore, you have a metastatic melanoma, stage four with an 80% probability of disease progression despite first line treatment with a median survival, given that we are now four months on from your original diagnosis, of potentially 6 months. You remain at risk of potentially life threatening serious adverse effects of the ipilumumab treatment.’
As I read it, I felt myself internally wilt. I already knew it all, but reading it on paper was brutal. However, just as I was reading it, Bruce and Beverley, some dear Kiwi friends from our days in Timaru where Ben was born in 1991, were ‘strangely’ prompted to write to us. Half an hour after reading my doctor’s report, sitting in a dark haze and mindlessly flicking through emails on my phone, I read Beverley’s words to me and Catherine…
“….However you are all constantly in our prayers and Catherine, I especially ask for you to know the Lord’s presence. To see your husband and your son suffering at the same time must be extremely hard. I can’t imagine what it must be like. Remember, “When you go through the waters I will be with you, through the fire, you will not be burnt.” You are not forgotten.”
Those words especially from Isaiah 43 were like balm for my soul. I sat with tears in my eyes. Father had known what we were going to read from the hospital – and it had to be read. But He also knew what we needed to read, needed to know and so He prompted a friend 12,000 miles away, a friend from Ben’s birthplace, to sit and write.
We are certainly not forgotten, and we were strengthened. And we’ve been strengthened by a small number of particularly special messages, gifts and offers of generous help from friends near and far, from churches and folk with whom we’ve shared life over many years. It was special to have Simeon take me out to lunch last Sunday for some father/son time, talking about all that’s going on, the effect that it’s having and, without any easy answers, strengthening each other.
Looking to the Son, who suffered such agony to save us, we can face today. I can, like King Hezekiah of old, lay out my letter before God and look for His deliverance for us, in whatever form that takes, all the while knowing that we’re never alone.
I remember years ago when our five children were much younger, people would regularly say to both me and Catherine, “I don’t know how you cope with five!”. But for us, it had just become our ‘normal’. We re-define our normality according to that with which we become accustomed. And I suppose that’s something of where we are today, living through what are chewy, tough circumstances, but something that has become our normality. It doesn’t mean to say that we have become desensitised and stoical in the face of hard realities and future prospects, or that we treat people’s kindness and sympathy with any disregard – far from it, we cherish it – but it means that it doesn’t feel like a black hole that’s constantly pulling us in. There’s a rhythm and everydayness in life we’ve adopted, undergirded by the Father’s everlasting arms that means I can presently sit in front of the fire as I write, a typical homely winter’s day scene, Catherine can be upstairs sorting some clothes, Lydia in her room on Facebook, Josh out at a friend’s house for the night having a jam session with his guitar, Tom at university reading for an essay, Ben and Dabi sitting side by side at the Mardon Rehab Centre and Simeon…well, I’m not sure where he is at the moment. Part of that rhythm also allows quiet tears to come and go for us from time to time, both folded into and a part of the everydayness as past, present and future all meet. I sat next to one of our five during the week as tears flowed, set off by some passing old memory which had highlighted the fact that future memories including me might not be there to be made. Again, it’s a part of our normality – the painful part – learning to lament. I’m conscious that it’s something scripture shows, especially the Psalms, pouring out our hearts to each other and God, openly and honestly yet trusting that His way and purpose is somehow always and ultimately good.
So it was with a sense of the everyday that Catherine and I saw my oncologist last Thursday, having had a CT scan a week earlier. Ayman Nasser, my main oncology doctor and one with whom I’ve developed an easy rapport, took us through what they’d found. And that was? Precisely, nothing new – my tumour remains unchanged. In one way, viewed negatively, the ipilimumab has had no effect on the tumour itself – neither an expected inflammation and nor any shrinkage. But positively, it has not grown nor has the tumour proliferated into further tumours in my lung. Ayman personally had not seen this before and was not sure exactly what it meant, but when I asked him if it was an ‘OK’ result, he nodded and said, ‘Yes’. After some further talk around a variety of subjects, we left for home. But we left not only feeling completely easy about what we’d just heard, but actually quite content as it has helped clarify our thinking as we seek guidance for our future.
For Ben, we continue to nurse concerns. As one friend said yesterday, he is still ‘a very ill young man’. Whilst this journey of recovery is inevitably going to involve the occasional ‘one step forward and two back’, we feel we’re seeing it happening more often than not. He came out and joined us at church near the Mardon Centre yesterday morning, having also been at home for most of the previous day. But he’s aware that walking for any distance is both risky and difficult because of dizziness, shakiness and the real risk of a seizure, but even simple tasks using his hands are slow, even unsafe, because of the trembling sensation he experiences in all his limbs. We’re meeting with the neurologist on Wednesday for a ‘round table’ discussion involving some of his therapists. Hopefully it’ll provide useful information which will help our perhaps over-eager expectations. We were glad Dabi was able to spend part of last week with some Brazilian friends in the Midlands and we continue to pull information together to support an approach to the Home Office to either extend or alter her visitor’s visa.
I was encouraged to read these words from Isaiah last week, words which seem apt both for Ben and for us all, containing so much promise and hope…
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint (Isaiah 40:28-31)
It’s now over six weeks since Ben was hospitalised. In so many ways, he seems to have plateaued with his progress over this last seven days. He had a few hours with us at home on Saturday, but the day before he had a seizure whilst on a treadmill with the physiotherapist, one from which he ‘self-recovered’ after some time. But it shook him – limbs were hurting, with continual shakes and he needed a wheelchair to return from the dining room. Earlier in the week on Tuesday, just before I arrived to visit him, he felt a seizure coming on and managed to contain it himself.We’re understandably disappointed and feel Ben’s confidence in himself is slipping.
Epilepsy is still at the top of the list as a possible diagnosis, although there’s still talk of something else with it. The trouble is, we know so little about it all and perhaps we need to understand that it’ll take time for the medication to be correctly identified and adjusted so as to suit his needs.
Meanwhile I had my latest CT scan on Friday and the results come next week when we visit my oncologist. At this visit, the expected news is that my tumour has reacted angrily to the assault launched against it by my ipilimumab-super-charged immune system. But it’s next month’s scan that’ll provide the crucial state of play….whether the tumour has remained at status quo, enlarged or is showing signs of shrinkage. That’ll then help us make decisions as to the times ahead, conversations that Catherine, I and the family have been having for the last few months.
It’s strange to catch myself describing this growth in my chest as ‘my tumour’ rather than ‘the tumour’. It’s an odd thing (and I guess some might find hard to understand) particularly when I say I’ve almost befriended it. Its arrival has brought so much into my life I could have never expected. On one level, because it’s considered a terminal diagnosis, I’ve never been offered so many things ranging from free prescriptions, parking etc – I can now even get over the Severn Bridge into Wales for nothing – but on a deeper level, there’s been such an outpouring of love, friendship, care, encouraging words, prayer and practical help, we feel so upheld. But even more precious have been the intimate encounters with God I’ve experienced as I’ve stood, sat, knelt or lain prostrate in worship alone or with others. It’s as the old hymn puts it,
O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.
This weekend, singing When I Survey the Wondrous Cross at church brought tears running down my cheeks – tears of wonder and joy. I’ve had simple opportunities to sit and read the scriptures and pray, as I’ve also had time also to think, to blog, to write letters to precious ones, so often experiencing that fresh and real touch of the Holy Spirit as I do so. Intimacy and eternity. I said to a friend some weeks ago that if Father was going to take me home, I wanted the transition from this life to the glorious one that scripture promises Christ has prepared for me, not to be a massive graunching of gears and huge surprises, but more a seamless transition into His amazing eternity. What I understand and experience of Him in this life will of course never be as good as when I see Him face to face, because it’ll always be limited by my mortality…it’s as Paul says in 1 Corinthians 13:12 “For now we see in a mirror dimly” or “through a glass darkly”. But even with that limiter, what we can experience and know now can be life-changing and times I’ve had with Father, through the direct access given by the Son, lifted by the power of the Holy Spirit, have nonetheless been rich. I was deeply encouraged as I read this week from Isaiah 30 words found in the middle of a warning to God’s people, but words which promise something real…
“In repentance and rest is your salvation, in quietness and trust is your strength’ (v15)
‘Yes’, I quietly agreed. And then I think of those promise-packed words describing life after the Christian believer has been bodily raised at Christ’s return, from the book of Job, words made more famous by Handel in his Messiah,
I know that my redeemer lives,
and that in the end he will stand on the earth.
And after my skin has been destroyed,
yet in my flesh I will see God (Job 19:25-26)
But also because of this tumour – no, because of Christ who indeed lives – I’ve had so many unexpected opportunities to share with others the reason for the hope that’s within me. It’s like one beggar showing another beggar where to find bread. Bread that lasts. The Bread of Life. Jesus himself. There’s no greater joy than knowing Christ and sharing Him.
As Dabi, Catherine and I, with my ever-loving parents-in-law, gathered with Ben late last week on Dabi’s birthday, we all prayed together as we read Psalm 40…
As an old friend of mine from North Devon used to say regularly after a problem was identified, “But God”. He is able to do immeasurably more than we can ask, hope or imagine.
The strange normality of our world continues for us as we live with both the reality of a son who has suffered a major neurological episode and the uncertainty of my melanoma’s effects. It’s been a week of concern and activity on both fronts. Ben will have been in the Mardon Neurological Rehabilitation Centre for a week tomorrow for an anticipated twelve week stay. He has settled in well. It’s Day 37 since his seizure and hospitalisation. His progress is steady although he’s continuing to show a number of signs that indicate the road ahead is a long one; twists and turns we’ve witnessed already show it’ll involve days when we feel we’ve hardly moved at all or even moved backwards. Positively, he’s communicating well (although his voice intonations have a way to go) and we can see more of the normal old Ben – including his sense of humour – coming through. He’s expected to dress himself each day and appear in the dining room for his three main meals. He has a great small flat to himself complete with a TV, a small kitchen and bathroom. French doors open out onto a patio. It’s all part of the National Health Service…quite impressive by anyone’s standards, surely. He has a pretty full timetable posted each week including physio, occupational, speech and language therapies, and is more than impressed with the care that the staff are giving him. He had a five hour home visit yesterday which went well.
Of concern however are occasional but repeated bouts of vomiting and also the continuing shakes. He was on an exercise bike on Thursday while in a rehab session when he felt a seizure coming on as his body started to shudder. Thankfully, the nearby nurses were alert and came running, and what seemed like a growing convulsion was averted. But it plainly indicated to both him and us that his condition is not stable. He had another electroencephalogram (EEG) scan in the hospital during the week which will no doubt be examined along with the expected (and long awaited) results of DNA tests as they start to appear.
He and all of us remain concerned also about his wife Gabriela’s immigration status. It is playing on both their – all of our – minds. She’s currently here on a six month tourist visa which, if they are to stay, needs to be converted to one which allows her to stay longer and even to work. The current immigration laws mean that unless one’s foreign spouse is from within the EU, the British half of the relationship needs to be earning in excess of £17,000 to bring their spouse into the country. Even then, the application needs to be made from the foreign spouse’s home country and can take up to two or three months to come through. Plainly Ben is in no position to be in employment (with probably another 2-3 months in rehab) and Dabi feels she needs to be with Ben during these vulnerable times. We’re thankful for a recent kind offer of help in high places which may just provide an answer. We pray Father will open unexpected doors in this matter. In the meantime, dear Dabi lost her grandfather back in Brazil this week. We pray Father’s comfort for her and her family. We’re so grateful for the love that the Clements, Sharps, Smiths, Salters and Dysons have been showing, offering her hospitality and friendship.
As Ben and I sat chatting last week and were reflecting on what it meant to have lost twelve or more days of memory while he was unconscious in the ICU, he said that he remembered, at one point, he felt himself to be slipping away, dying. I asked him how he felt about it, knowing what he’d written on the blog weeks before, and he simply said, ‘Peaceful’. He then recounted how, on another occasion, the room was totally black and he saw a large angel, bright, standing at the foot of his bed. Some may say it was the results of a drug-induced delirium…maybe, but Catherine had particularly been praying that an angel would be encamped at the foot of his bed. As he and I talked, it led on to a long discussion about death and what the scriptures show us…the promise for the believer in Jesus that to be absent from the body is to be present with the Lord, and that one day, as Christ returns, those who’ve died already ‘in Christ’, their bodies will be resurrected and transformed – the perishable will be raised imperishable, we’ll be clothed similar but vastly different to our current earthly bodies, entirely in line with Jesus’ body after his resurrection – recognisable and yet not; able to appear through locked doors, but able to be touched. Absent is all the nonsense about floating around on clouds playing harps, but clothed in spiritual yet physical bodies ready to live in a new transformed environment, heaven and earth combined, face to face with God and rejoicing as we hear “a loud voice from the throne saying, ‘Look! God’s dwelling-place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. “He will wipe every tear from their eyes. There will be no more death” or mourning or crying or pain, for the old order of things has passed away.’ (Revelation 21). We were both encouraged thinking about it.
It’s been a strength for me to be considering these things again this week as I’ve had a few days feeling pretty unwell, leaving Catherine understandably somewhat vulnerable and concerned. A couple of nights of heavy and profuse sweats (last experienced three months ago and often associated with advancing cancer) alongside three days of feeling increasingly ‘feak & weeble’, made us wonder whether I was taking a turn for the worse. However, this weekend I’m feeling much stronger. It was a good week though to quietly sit and finally write letters to each of our children – letters to be kept safely and given to each of them in the event of my death. It was a precious task I’d delayed doing as I knew it was going to involve both time and some very careful gathering of thought – communicating love, hopes, memories and reflections.
I face my next CT scan this Friday 6th February. It’s expected to show the tumour inflamed and angry, reacting to the drug. A second scan follows a month later – that’s the one they’ll be looking at closely as it’ll indicate where things are heading.
Some wonder how we cope. I guess that we’ve learned to simply take each day at a time and not worry about what tomorrow might bring. It’s about knowing that Christ is already there ahead of us and that, for the present moment, Father has said, “I will never leave you nor forsake you.”
This is Catherine back again…
Today is Day 29 of our journey with our son Ben. At 12.45 today it was four weeks since our world was sent into a new orbit. He had twelve days in ICU, seventeen days on the neurology ward but on Monday he is starting his third and hopefully final stage. He will be moved by ambulance across the road to the Mardon Neuro-Rehabilitation Centre. The plan is for him to be there for 10-12 weeks. Yes, still a very long journey of which we have only completed a quarter. Easter is likely to be well and truly over by the time he is ready to come home. God is good getting Ben into Mardon as there is a waiting list but they have prioritised Ben as a bed has become available. The Mardon Centre is for stroke victims or others who need occupational therapy, physiotherapy and general cognitive rehabilitation. He will have a small flat to himself, a timetable to follow for his programme within the Centre. He will have communal meals (he is under a dietician as he has lost so much weight, a result of hearing his Dad’s terminal diagnosis) and a garden to wander in. We are visiting it with him this afternoon. Please pray he adjusts well. He knows he is not ready for home yet but slightly daunted by the length of time it involves. Visiting is restricted so we need to adjust to that. He is really needing rehab from the original fall in July, so six months worth. The full diagnosis has yet to be made, but they are thinking it is epilepsy plus an as yet undiagnosed condition. Ben is over the moon not to have the blood thinning injection in his stomach; he hated that with a passion
A few hours later….
The visit to Mardon went well. We noticed that St Leonards, a great local church, are holding a service there tomorrow. This is a church with which we are familiar and also where two of Ben’s friends – a couple with whom Dabi is staying – are members. I think they hold a service there once a month so a shame Ben just misses it but great it will be there for him next month. We all feel this is going to be a very positive step. And the best thing – free Wifi! Ben is ecstatic.
Ben’s improvement continues as he’s now eating normally, walking the lengths of the hospital corridor and trying the stairs, all aided by the physiotherapists. He’s speaking and acting well although often presents more as a child or teenager. Feeling more and more cooped up, he’s been complaining that he’s both bored and wanting to go home. The doctor, thinking it would be good for him to have some day trips, allowed him out for a visit home yesterday for a couple of hours. However, it wasn’t as great a success as Ben hoped. Firstly, it was delayed because he was sick in the morning and developed a shakiness and then eventually when we got home mid-late afternoon, he found it much tougher than he’d realised, felt increasingly unwell, and was glad to get back to the hospital. Large chucks of memory are still either foggy or missing altogether and neither of his foreign languages (part of his job and therefore his income source) have returned. The expectation is that he will be in hospital for the next 2-3 weeks. The diagnosis still remains elusive; the earlier idea of vasculitus has been ruled out and epilepsy is now being mooted, although it does not explain various other symptoms he’s been experiencing, and so we continue to await the results of genetics tests. The mystery continues.
Over the last few days, I’ve been working through the Old Testament account of Joseph – famous because of his ‘techicolour dreamcoat’ – and giving it some thought. All the way through, it seems people and circumstances conspired against him. Admittedly, maybe he was a little unwise in sharing his grand dreams with his family so readily, but he seems ultimately to be someone who had every reason to shake his fist at the sky and everyone under it and to emerge as the ultimate self-made, lucky break man intent on revenge. It’s amazing to see however, as the account moves on, what he does do when he finds himself as Pharoah’s equal in all but the throne. Revenge is the last thing on his mind and he attributes all he has become to God as he says to his brothers who’re expecting his wrath, “As for you, you meant evil against me, but God meant it for good, to bring it about that many people should be kept alive, as they are today.” (Genesis 50: 20). That even in the worst things that happened to him, he was ultimately able to see that God was there using each event to do something that perhaps couldn’t have happened any other way. The end result was that a dysfunctional family was reconciled, millions saved from starvation and the line from which the Messiah would one day come, protected. Joseph himself was prefiguring what that very saviour would be and do – through suffering, he’d receive honour and glory, and that he’d rule and save countless millions who came to him, even the most undeserving.
It’s as I reflect on that whole story I’m encouraged to see again that none of my (or our) own trials and difficulties are wasted in Father’s economy. What might appear to be awful, God (even if he didn’t initiate them) uses for good. It doesn’t however mean it’s time for pious platitudes, but it does mean I can confidently affirm that far from abandoning us, He’s with us, doing something perhaps yet to be perceived that could not happen any other way. It does however also mean than I can sit still alone, agonising, be largely without words, only ‘groans‘…and still keep faith in Him who loved me and gave Himself for me. After all, what appeared to be the worst of suffering as Christ hung on the cross, turned out to be the greatest event of redemption.
Paul, writing so plainly under inspiration of the Holy Spirit wrote, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28)
And then Peter also, so encouraging to us…
“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith – of greater worth than gold, which perishes even though refined by fire – may result in praise, glory and honour when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. (1 Peter 1)
It’s now Day 20 since Ben had his seizure and was admitted to hospital. The news, on one level, continues to be good. He is communicating pretty well, and is more and more able to form ‘islands’ of memory, recalling certain events and times and then starting to join up the dots. He often begins to say something and then tails off as he looses his train of thought. His short term memory is poor, often not remembering much, if any of what has happened even in the last few hours. He can tell us his age – he told us he was 23 and then added, ‘I’ve been dead for a long time‘. Substitute ‘dead’ for ‘alive’ and it perhaps makes more sense. He’s not so clear about where he is – country or whether it is a hospital – or how to tell the time, or who the Prime Minister is. Interestingly, he is fixated on going to Australia to stay with his aunt, my sister Julia. If he mentions it once, he mentions it three or four times in the course of a visit, planning that we’re leaving tonight or tomorrow. His fluency in (or even knowledge of) Portuguese and Spanish has gone, but we’re assured by the neurologist that it’s quite common for second/third languages to disappear for a time after an incident like this. He is responding to us all appropriately and well, often showing a lovely tenderness towards Dabi when she arrives, and enjoys looking through both recent and old photographs, often with some heartening detailed recall. His favourite photo is of him and Dabi on their wedding day. One old photo prompted a gleeful memory of an enormous water slide we had down a steep grassy bank in our garden in North Devon and our good friend Linda going down the slide, over the muddy grass, then over the bank and into the park below! That must have been ten years ago, but he laughed as he recalled it clearly. Physically, he’s lost a lot of weight and muscle tone, but with the combination of physiotherapy and him now starting to eat solids again, we’re hoping to see him regaining some bulk.
On another level however, the neurology team continue to hit a brick wall regarding a diagnosis. Still awaiting test results from around the country, they’ve been going back over all the tests that they’ve carried out already. He’s had a fresh MRI scan of his head, which has shown a reduction in the swelling – good news in itself – but which has shown nothing to indicate the cause.
Since writing all the above, I’ve seen Ben again today. He’s now had all tubes removed, has walked the length of the corridor twice with the physiotherapist and is now eating unassisted, even polishing off two large sandwiches, some mashed vegetables and a pot of yogurt. While he is looking so much better, his mental confusion continues as he struggles to make sense of both past and present. However, as a good friend and fellow pastor here in the city left the hospital today having visited Ben, he saw a double rainbow in the sky above. Sending me the picture (above) in a text message, Aran commented, “…reminded of God’s faithfulness through trials”.
As I was sitting with Ben yesterday, he randomly said, ‘I spent an hour talking to God this afternoon’. I asked him if he found it helpful, to which he replied, ‘I did’. And so we pray on with him.
The news continues to be positive for Ben as he has made further progress in the last two days. Whilst he still has tubes at both ends, one feeding him, he’s alert. At this stage, he’s best described as being like a toddler in terms of his responses – he recognises me and Dabi, is not so sure about Catherine yet, but willingly gives her a kiss when asked, and when looking at photos, mixes up his siblings. The neurologist yesterday agreed that it seems there are blocks of memory that have returned, but others that haven’t. He waves his hand in response when we go, and smiles at times. His speech is minimal, quiet and only semi-coherent: communication is at its best when he has a ‘yes/no‘ question to answer. He’s making regular attempts to get out of bed, but is told firmly ‘no, lie down’ by us or the supervising nurse, because of the tubes. The physiotherapists had him standing yesterday to do some work with him. Apart from his mental capacities needing to improve, physically he’s very gaunt, and has lost much muscle tone.
All in all however, it’s been so encouraging for us to see his progress, although we understand that the rehabilitation road ahead is a long one. The medical team hope that as test results start to come back in the next 10 days, more answers will begin to emerge about what seems to be an auto-immune condition in Ben’s body causing a form of vasculitis.
For most of yesterday, I was literally through the wall from the neurology ward having my last treatment session with Ipilimumab. The dear NHS has now emptied an eye-watering £360,000 worth of this state-of-the-art drug into my veins. As someone said to me recently, you must feel like the equivalent of the L’Oréal boy…“Because you’re worth it”! I’m going to miss Cherrybrook ward as I’ve come to enjoy my three-weekly enforced rest and relaxation session. Combined with each treatment has been an anti-histamine which makes me nicely drowsy and often sends me off to sleep. I’ve so appreciated the amazing attitude, care and attention of the nurses and other medical support staff – and that for Ben as well, especially while he was on the ICU. As far as my next steps, I’ll be having a CT scan in a month’s time. The team often find melanoma tumours by that stage to be inflamed and angry, reacting to the drug. They therefore pay little regard to this scan. However, a month on, I’m scanned again. This is the scan to which they’ll be paying particular regard as it’ll show which way it’s going.
In the meantime, when people ask how I am, I often answer as my dear old friend and mentor Simeon Damdar used to answer. Some 26 years ago, I worked as a Voluntary Evangelist for the London City Mission under Simeon’s care. But Simeon has suffered with heart problems for many years and when people asked him how he was, he’d answer, “I’m fine, I’m dandy, I’m thriving…it’s just my body that’s not so good”. I love that response. Truly one that a lover and friend of Jesus can use at most times. It is well with my soul. But I’m feeling fine and well otherwise.
Catherine and the children are all doing “ok”, although this time with Ben has hit them all variously in different ways and at different times – one copes differently to another. Tom has managed his first term studying at Cardiff really well despite the fact that my diagnosis came only three weeks after he started. He’s even got some great first grades back. Simeon has come and gone, struggling at times but supported by his mates; Josh and Lydia I’ve mentioned in recent posts.
As we continue to walk through each day, many messages come from friends. This one from Andrew, both a friend of ours and Ben from his time at Plymouth University, particularly struck a chord for me –
“In the knowledge that sickness is part of this fallen world and will one day be wiped out and we pray against it…and yet knowing that suffering is that which God uses to sanctify and that even he can use sickness for good, I hope this quote from Samuel Rutherford is of some help: ‘When I am in the cellar of affliction, I look for the Lord’s choicest wines’.”
It has been a time of discovering the ‘choicest wine’…and it has been very choice. But it’s only possible because of the promises contained in these words of scripture, penned by the apostle Paul in his letter to the Romans, chapter 15
‘May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope’
Since publishing the earlier blog posting this morning, Catherine has just sent me a text from the hospital saying this,
“Wow – he looks much better. Has a nurse with him. Was watching TV and trying to talk a bit. Not sure how much he understands”
I’ve told her not to wear him out too much so that, when I go in later, I will see the change.
Dabi, Catherine and I met with one of the consultants yesterday and early signs are that Ben may have a form of vasculitis of the brain – basically an inflammatory blood vessel disease, and in his case affecting a small area of the left side cortex. It is, however, an early diagnosis and may change as the vast battery of tests continue. He’s now been transferred from ICU and onto the neurology ward, ironically adjoining my cancer chemo ward. Tomorrow after I receive my final immunotherapy, I’ll be able to walk out of my ward and straight into his.
He’s now off all machine monitoring and support – the tracheostomy was removed – and he’s breathing unaided, albeit with a small amount of oxygen being piped into his nostrils. He’s occasionally semi-responsive when we call his name, and is starting to regain slight use of his right side. However, the general feeling we get when sitting with him is that the lights are on, but nobody’s home. We found it hard to leave him last evening as he was curled into the foetal position in his bed, hand regularly touching his head as if he might have a headache. He just looked vulnerable. Staff warned us that it’s hard for families when patients leave ICU as they become so used to the intensive one-on-one patient care, whereas now he’s left alone for longer periods of time. It’s looking like we need to be prepared for the medium-long term haul which will also involve some time in rehab.
I’m conscious none of us can ever say what tomorrow brings, but for Ben, the future feels like there’s an uphill path to walk for some time. Dabi is doing wonderfully well – obviously so concerned and anxious for Ben, but maintaining a growing inner strength. We all at times feel battered by what’s happening. Understandably, Lydia (15) said a few days ago, ‘I feel like my world is crumbling’. This morning, as we talked over breakfast, she told me she was feeling stronger. Some days are easier than others.
So, we pray on, mindful of these words from Psalm 145.14, sent to us by a dear praying friend –
The Lord upholds all who are falling and raises up all who are bowed down.
For the last two days, Ben’s situation has been improving, inch by inch. He’s been opening his eyes, and yesterday, he was more engaged visually. If his eyes are open, most of the time he looks quite vacant until he momentarily latches on to something or someone…then he’s gone again. He has started to move his left hand around and even offer a faint grip, but yesterday, as the sedative was reduced, he became more agitated and tried to pull his feeding tube out. The sedation level was consequentially increased. Last evening however, the sedative was withdrawn and he seemed more naturally at peace, though he’s wearing the medical equivalent of a boxing glove to stop him pulling tubes out. Whilst he’s breathing unaided, the ventilator and tracheostomy remain. The nurses had him sitting (with much assistance) on the edge of the bed yesterday morning, and even reported that he had given a faint smile at something. But whilst he’s moving his left hand and leg freely about, there is some concern about the almost complete lack of movement on his right side. However on the positive side, a lumbar puncture yesterday has returned a clear result.
The great mystery, yet uncovered, is the cause of it all. The neurological and microbiological teams are continuing to work away, eliminating various possibilities and scanning him for others. We continue to await the results of genetic tests from Oxford and other places. A couple of possibilities that haven’t been discounted leave us somewhat cold. Dabi remains constantly at his bedside from 2pm – 8pm each day, and Catherine and I are there as much as possible also.
It seems so strange that it’s now Day 11 since the seizure that set it off. The outpouring of love and support has been immense from our own local church and community. To have one of my colleagues interrupt his holiday to go into the ICU and spend half an hour alone with a then-totally comatose Ben, to pray for him, was amazing. But there’s also been so much support from almost everywhere. On the spur of the moment, Tom and I went last Sunday to a church with which our family has a strong link. Walking into Grace Church, we were met by a wall of love and compassion from our many friends there, and were humbled to unexpectedly find that a section of the service had already been laid aside to pray for us as a family. To have a crowd stand to pray for our family was strengthening. After the events of this week, to sing hymns and songs, both old and new, focussing not on ‘me’ but on the unchanging nature of our wonderful God and the unassailable truths of His love, His grace, His forgiveness, of Christ’s cross and the eternal life offered to us, was heavenly. To have the scriptures opened and from them, Jesus lifted up and commended again, was just like a balm to my weary soul. Thanks Stuart, Rachel and Rob, Matt, Dave and everyone.
It was balm particularly because for some days, I’ve wrestled with “Why?….And How do I defend God to those many who might think, ‘If this is how God treats His family, I’m not interested in believing in Him’ ?”. Then I again considered how Job (pronounced like ‘Jobe’) and his friends in the Old Testament had tried to explain and defend God’s ways to each other in the face of Job’s tragic circumstances and had gotten it so badly wrong, and were even accused by God of darkening His counsel. Then I realised it wasn’t my job. I can’t see what He sees. I can’t understand all His purposes and ways. Father’s ways are higher. I’m reminded of Isaiah 55, where I read –
For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord.
And then in Deuteronomy 29, I read –
“The secret things belong to the Lord our God, but the things that are revealed belong to us and to our children forever, that we may do all the words of this law.
There are some things we will never understand while in this life – they are the reserve of God. On top of that, we live in broken and confused world that suffers from the effects of human sin at every level and the resultant, momentous fracture from its creator. We experience the result at various levels of our lives. My role though, as one of Christ’s friends and servants, isn’t to explain all God’s ways or why He allows some things to happen. My call is to live out now what we do know and understand from the scriptures, of God in Christ who has entered into our world and into our suffering. My call is ‘to give a reason for the hope that is within’ me, to give a good account, a defense of the gospel of Christ, to show that it makes sense to believe and follow, that it’s based on attested facts and events and that it isn’t some made-up fairy tale. The Holy Spirit does the rest.
And so this last Sunday, in the middle of what are ‘hard to understand’ things happening in our lives, it was so releasing to worship our God who is incomparable, and who has promised never to leave us, so close at hand in Jesus Christ – Jesus, whose body was broken for my broken life to make it whole through faith in Him, in His sacrifice and resurrection; Jesus, offering life in all its fullness, there helping and healing the brokenhearted, there in all His covenant love, grace and glory. It was sublime.
In the meantime, I prepare for my fourth and final scheduled immunotherapy session this Friday, unsure what lies ahead and beyond , but clear about Who walks with me. I ponder these words sent by a friend, a prayer of blessing –
May we discover that the road we didn’t choose, didn’t want to travel, is a highway that leads unerringly towards the Light.
When you’re in a dark situation, small pin pricks of light mean a lot. Despite being in an induced coma, we’ve been talking to Ben regularly, telling him various things – the date, where he is, family information and news etc. But this afternoon, he opened his eyes – although quite glazed over – and looked towards us and then, when I said Dabi was there, slowly across to her. To see his eyes after a week was heartening. Later, he then moved his hand towards Catherine’s in response to her speaking to him. We’re aware from the nurses that these and certain other actions can be involuntary or reflex, but it gave us a longed-for moment of fresh hope and encouragement after a long week. He’s running a slight temperature but it seems to be under control and is sedated again because, as before, he became slightly distressed by his tubes. The neuro team are still apparently a long way off a diagnosis and any subsequent treatment; they’re awaiting the results of genetic and other tests from samples from Oxford and other parts of the UK.
We pray on.
Within our family, the news on Ben which we are painfully trying to come to terms with, is that he may have what the consultant describes as a ‘progressive brain disease’. Much remains a mystery to the medical team at the moment as we face a grueling wait for the return of various test results – some 2-3 weeks.
We continue to keep a vigil at Ben’s bedside in the ICU during visiting hours. Whilst he is described as ‘stable’, he has developed pneumonia due to his ventilator, and so with the resultant involuntary coughing, to keep him free of distress because of the tubes in his mouth, the medical team are keeping him heavily sedated in what is in effect an induced coma. Yesterday – New Year’s Eve – he underwent an MRI scan to further investigate what’s happening in his brain and to help assist in discovering what’s behind all this. The result has indicted that he has encephalitis, that his brain is swollen. But the cause is unknown.
All of us – Dabi, Catherine and I, Simeon, Tom, Josh and Lydia – are doing OK in the circumstances, albeit going about life somewhat mechanically. We wrestle with what information we have been given, but hold onto what light is contained in the words the consultant used when he said ‘we think he has a progressive brain disease which may or may not be treatable’.
It seems a strange thing to have become so relatively accustomed to sitting on the chemotherapy ward for my treatment, now to find ourselves sitting alongside other families in the ICU Visitors Lounge, waiting to see their precious ones also in the unit. We know that the next 2-3 weeks will be one of ongoing waiting. But beyond that, the path ahead for Ben seems too deep and difficult to comprehend – for him, for Dabi – both married just 17 months – for all of us…to say nothing of its intersection with my health and prognosis. My ‘switch’ gets thrown every once and a while either through tiredness or something particular happening. When I found Josh sitting in the living room, strumming his guitar, with tears in his eyes, it caused a reaction. He’s been learning to live with my melanoma prognosis, and now he’s had his brother’s news. I sat down next to him, arm around him. I did the only thing I could do. I prayed with him, feeling my eyes welling too. Then, as I have sat in church quietly alone over the last few days, even lying prostrate on the floor, I find words both easy and hard. “Too much, Lord” is one breath; “Father, I trust you through all this”, another. “Hide not your face from me in the day of my distress”, from the Psalms, yet another. But through it all, I’m reminded of the words of scripture –
“Faith is the assurance of things hoped for, the conviction of things not seen”
As Father has been over these last few weeks and months through my diagnosis, so He is now. The arrival of painful times doesn’t make Him any less God than He’s always been. Hardship was never something He promised His family would avoid. Grace is what He promised to take us through. Precious, sweet amazing grace. Sufficient for each moment as was daily manna in the desert for the Israelites. And Ben affirmed so much of his own confidence in Christ as he wrote here on the blog a few weeks ago.
One of Ben’s favourite hymns is one he and Dabi had at their wedding. I reckon it says much for the present moment.
Ben remains in a stable, but unchanged condition in the Intensive Care Unit. During the night, he had a convulsion despite being sedated. The medical team this afternoon have tried to bring him around and get him breathing without assistance but he wasn’t sufficiently responsive so they have put him back under full sedation and breathing via a ventilator. Blood samples have been taken so that the microbiologists can check for any infections or clues (eg anything he may have picked up in Brazil). An EEG scan of his brain has been ordered also so that the neurology team can start to make their assessment.
Our daughter-in-law Dabi remains at his bedside, and Catherine and I and various of our children are coming and going. As we knelt in a circle round the coffee table together last night holding hands as a family, we prayed asking for Father’s strength and protection and that the day’s events would somehow prove useful. Ever since he first suffered with this in July in Brazil, the medical teams have never been totally satisfied with the original Myasthenia Gravis diagnosis. We’re now praying that this traumatic episode might speed up the process of diagnosing whatever Ben has.
What it does to a parent watching a child, no matter what age, going through something like this, is so painful and traumatic, especially when you see them attached to machines by a thousand tubes and lines. But a friend emailed us in the wee, small hours of this morning words from Psalm 33 –
And then another friend emailed words of an old hymn –
We have an anchor that keeps the soul steadfast and sure while the billows roll. Fastened to the rock that cannot move; grounded firm and deep in the Saviour’s love.
We walk on, stumbling at times, feeling our way in what feels like the dark. Helpless, but not. Powerless, but not.
How to say this? Our 23yr old son Benjy is lying in the Intensive Care Unit in Exeter after he had a seizure while we were on a walk in the countryside today. Semi-conscious, but unresponsive, we had to follow various instructions over the phone from the ambulance service before the paramedic eventually reached us, followed by a small all-wheel-drive multi-terrain ambulance vehicle. Ben was taken into A&E, continuing to fit, but where he stopped breathing. After some further emergency intervention and a CT scan, he was transferred up onto the ICU, where he’s now looking peaceful, but in a medically induced state of unconsciousness through heavy sedation, on a ventilator and in good care. The CT scan result was clear.
If you are a praying person, we’d be glad if you could join us.
After a full, enjoyable Christmas Day with fourteen at the table, today – Boxing Day – I went into hospital as arranged for a CT scan checking for any clots which may have developed in the vicinity of the tumour and which may account for some pain I’ve had in the last few days. The good news is that not only has the pain now gone, but today’s visit and scan have shown there are no clots. And just when I was getting used to injecting a blood thinner drug into my stomach each day…guess I’ll have to find a new pleasurable pastime.
My next and final immunotherapy treatment is due for 9th January, and I’m continuing to feel well. My parents leave tomorrow starting their journey back to NZ. We’ve all loved being together, and at the same time we’ve all acknowledged it’s been one the hardest journeys they’ve ever had to make. It’ll be a poignant, yet hopeful goodbye. I shared with the family around the lunch table today an old phrase I heard years ago, ‘We don’t know what tomorrow holds but we know who holds tomorrow‘. That ‘who’ described himself as being the ‘alpha and omega’ – the bookends of history, the one who holds all things together, even in our individual lives. It’s good to affirm it again and know we’re not abandoned.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8.28
For those in a time zone ahead….Happy Christmas. For those not quite there, it won’t be long – hang on!
One way to spend Christmas Eve is in hospital where I’ve unexpectedly been most of the day, having had a slightly uncomfortable 24hrs centred around my right rear chest area, causing some discomfort in breathing. The X-ray today has indicated the tumour on my lung is just as present as ever. The doctor is concerned that my current discomfort may be caused by resultant clots so has given me some injections to take home – once a day, to be self-injected into my stomach. Fun. I can’t say that one was on my bucket list. He has now also ordered a fresh CT scan for Boxing Day morning to check the actual state of play.
On a more positive note, our son Ben & wife Dabi arrived safely home from Brazil late last week accompanied by Dabi’s father travelling with them for peace of mind and assistance on the journey. The trip involved a two-night stop in Ethiopia, which, if Ben had been well, would have been a worthwhile place to see, but when you’re unwell is not an ideal place to be. Landing eventually at Heathrow, Ben had to be placed in a wheelchair once off the plane. We’re now waiting for a hospital referral to yield an appointment for him so he can undergo a fresh diagnosis and receive appropriate treatment.
Thanks for all your support and the many hundreds of messages of support through the blog over these last two months. As we celebrate Christmas, it often has the habit of reminding me (strangely you might think) of judgement. It’s not one of those popular concepts, but when you think of the tragic shooting of 132 children in Pakistan last week, when you think of the recent ISIS beheadings of children and parents in Iraq, when you think of a tonne of other appalling atrocities, I’m certain we all long for a day of reckoning when those who’ve committed such things will be held to account and made to pay for their crimes. The thing that warms my heart is that there will be such a day, one to which scripture regularly refers – the day when Christ returns and when all that’s wrong will be exposed and justice will be done. But it’s a day which will put the spotlight on all of us – all my wrong, my attitudes and wrong acts, both the things I’ve done and failed to do, on how I’ve worshipped so regularly at the shrine of my own desires and not God’s. I stand guilty. And that’s why Christmas – and then the cross – is so truly beautiful and wonderful, because the One who saves us from judgement – the Saviour – was born. Immanuel, God with us. God who took the rap for me by hanging then in my stead on the cross. God, in Christ, who delivers me from that judgement, through my simple repentance and faith in the saviour to a new life, into eternal life…as the old carol goes, “Born to raise the sons of earth, born to give them second birth”. And the choice remains mine and ours. I can take the dangerous Sinatra ‘I Did It My Way’ approach, or I can receive Christ and receive life, knowing that with Him, wonderfully, the best is yet to come.
‘Yet to all who received him, to those who believed in his name, he gave the right to become children of God’ John 1
It makes for a very joyful and peaceful Christmas. And God’s joy and peace are realities I’ve known by the bucket load in these last two months for which I’m so grateful.
Happy Christmas everyone!
PS I’ve just injected myself and survived. New things to try at Christmas.
As I approach Christmas next week and look back on these last 2½ months since my diagnosis, we’ve been overwhelmed by the outpouring of love and care amongst family, friends and people we’ve never met. It’s been truly humbling. In these last few weeks, we have had some beautiful times as a family. My parents, Trish and Nick, sisters Anna and Julia and brother Hamish have been with us from New Zealand, Australia and London. We were able to share a family celebration marking Ma & Pa’s momentous fifty years of marriage in a special evening event at Rockbeare Manor, a gracious and historic local house owned by our dear friend, Gerard. During the evening, we presented Ma and Pa with title deeds to small plots of land, part of a conservation project, in the Scottish Highlands, thus creating them both as Lord Nicholas & Lady Patricia….time to doff your caps! In these last ten days, Catherine and I have celebrated our Silver Anniversary – twenty five years since our twenty three-year-old selves both said “I will” to each other. Like all marriages, we’ve had our good times and tough times – times when we’ve had to remind ourselves that we said “I will” not “I feel”. In a world which is characterised by the easy ‘if it feels good, do it…and if it doesn’t, throw it away’, I’ve found something different. I’ve experienced that marriage (which in the Bible is used regularly as an analogy and example of Christ’s relationship with us) is a means of His grace and is a relationship that teaches me so much about His commitment to us – one who always protects, always trusts, always hopes, always perseveres. A covenant that endures all things through thick and thin. While I can be insufferable at times, HE endlessly forgives me one more time than I will ever fall. HE never stops loving me. And I’m called into this relationship with Him, which is not about me, but about another. His best is my goal. As I think about my precious wife, the forgiveness and commitment she has demonstrated over the years, but also the agony, care and love she has shown in these last few weeks since my diagnosis, more than ever makes me see Jesus through her and I realise what a beautiful gem I chose. I’m indeed blessed.
In these last two weeks, we’ve also faced the trial of our son Ben’s illness in Brazil, a relapse and deterioration of a condition with which he was diagnosed in July. As I write, he and his wife Dabi are en route back to the UK with Dabi’s father accompanying them for extra aid, and due to arrive tomorrow. Ben has thankfully made some good improvement, but there are continuing concerns for his health and the accuracy of the diagnosis. Again, we’ve been grateful for the prayers of many.
As I face my third session of immunotherapy treatment at the end of this week, I’m feeling very well. After both initial treatments, I’ve had an hour or two of nausea and sickness, but nothing more. Small pea-sized lumps (whether tumours I don’t yet know) have started to appear in my right leg – the area considered to be the primary melanoma site – which may just be a predicted initial reaction to the drug. But other than that, I’m as well as I ever was. The long term journey however continues to take us down paths of light and dark. The family and I remain continually conscious of the realitie