Jeremy…husband of Catherine, father of Ben, Simeon, Tom, Joshua & Lydia. Up until the end of April 2015, he was pastor/vicar of a group of churches on the edge of Exeter in Devon, UK. In early October 2014, aged 48, he was diagnosed with advanced cancer, a stage four malignant melanoma presenting as a tumour on his lungs. The usual life expectancy is 8-12 months. Then, in late December 2014, 23 year old Ben suffered a seizure. After prolonged medical care for what was most likely to have been a viral infection affecting his brain, Ben died in April 2015. Jeremy has up until recently seemed to have responded well to pioneering immunotherapy treatments that can extend life, but from September 2016 is now facing the fresh development of brain tumours and potentially now just months to live. On January 27th 2017 Jeremy took his last breath and went to be his Lord and Saviour. The family share their thoughts, feelings and reflections as they taJeremy…husband of Catherine, father of Ben, Simeon, Tom, Joshua & Lydia. Up until the end of April 2015, he was pastor/vicar of a group of churches on the edge of Exeter in Devon, UK. In early October 2014, aged 48, he was diagnosed with advanced cancer, a stage four malignant melanoma presenting as a tumour on his lungs. The usual life expectancy is 8-12 months. Then, in late December 2014, 23 year old Ben suffered a seizure. After prolonged medical care for what was most likely to have been a viral infection affecting his brain, Ben died in April 2015. Jeremy has up until recently seemed to have responded well to pioneering immunotherapy treatments that can extend life, but from September 2016 is now facing the fresh development of brain tumours and potentially now just months to live. On January 27th 2017 Jeremy took his last breath and went to be with his Lord and Saviour. The family share their thoughts, feelings and reflections as they take this painful and unexpected journey.

Posts tagged ‘ipilimumab’

“We are family…”

the-waltonsI 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.   

line-in-the-sandThis 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.

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In Looe, Cornwall

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.

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My hair has been gone for over three weeks. I asked friends on Facebook to decide who I now most resembled – Spike Milligan’s ‘Bald Twit Lion”, Kojak, Sir Patrick Stewart or Walter White? The vote came back for Walter White (although, for those who know the series he’s from, I’m stating clearly I’m cooking nothing stronger than sushi in my kitchen)

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?!

habakkukIt’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.   

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Pembrolizumab begins

Writing from my treatment chair in oncology two days ago… 

Version 2There’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.

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The two of us twelve months ago

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

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Catherine at Overbeck’s, Salcombe

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)

Fresh springsIt’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.

Memories and Remembrances

memoryThe 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.

Ben's headstone copy

Ben’s headstone…click to enlarge

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 Fading footprintsfrom 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’.

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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. 

WordcloudBut 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.”

Having certainty

change_web-50a0e62051fbd541559185Just 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.

braf-picSo….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.     

Door openingIn 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’?

VaneWell, 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.

reading-bibleAlong 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.    

Greek manuscriptSecondly, 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.

New Testament Documents 2

(Click to enlarge)

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.

Empty tombThen 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.         

DeathAnd 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.  

TearsThe 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!

Facing the facts

blue-sky-with-golden-and-black-cloudsIt’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.

PET Scan resultThe 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’.

Keytruda_pembrolizumab_melanoma_checkpoint_PD-1-20150729040309992Hearing 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.    

concernsI’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?’”

Reading the bibleCo-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…

The Lion, the Witch & the Wardrobe“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.

Having scanned the man…

Good news LikeAfter 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.

Stirred…but not shaken

Brooklyn_Museum_-_The_Tower_of_Siloam_(Le_tour_de_Siloë)_-_James_Tissot

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.

Good news and not soI’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.

Disturbance in the forceIt 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.

Digging down deeperThe 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 –

Great cloud of witnesses“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. 

 

Islands of Encouragement

EncouragementSome 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.    

Pastor RichardThat 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.

IMG_0054While 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.

IMG_0057A 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?

“No”

“What’s wrong?”

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”.

Comforting handTears flowed, as Lydia put her arm round my shoulder and we all sat in various states of undoing, once again looking into this chasm.

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” 

HopeThe 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.

The Agony, the Ecstasy and the Everyday

One year agoIt’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.    

Not listeningBut 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.

Hard timesSome 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”.

Garden changeAnd 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, accompanieIMG_2368d 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.    

Dark clouds and sunWe’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.     

ApostlesCreedDuring 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.

Light Piercing the Silence

Clock busynessMy 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.

anguished prayerBut 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.   

Friends helpingIt’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.    

Medical good newsIn 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. 

IMG_2097And 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! 

As well, if you’re reading this having linked into it through Ben’s Facebook page, and you want to keep up with this blog, as Ben’s page is about to be closed down, please subscribe directly to this blog by signing up in the box at the top right of this page.

Painful pathways

Dark pathsThere 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.

tears-silent-language-of-griefGrief 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. 

Lonlieness of griefOver 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.

Holding hands in griefAnd 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. 

Good news 3Just 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 Thanksgivingclick to enlarge

Ben's Funeral SheetBen's Funeral Sheet 2

Facing uncertainties with hope

TwilightWe 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.

MortgageWhile 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. 

Perky PensionerI 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!

Serving ChristWhilst 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)

The big decision and the Faithful Hand

graphLast 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 keep-calm-and-dont-be-such-a-drama-queenMelbourne 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.

retirementBut 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 theHouseHunting-Pic-copy 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 generous_godher 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. 

Snakes and Ladders

I’m sitting currently writingTyping at night 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.    

snakes and laddersBut 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.

letterI 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 Deep watersyour 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.

Normality and the everyday

Unexpected RoadI 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 Stethoscopeearlier.  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…On Eagles wings

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)

Joy that seeks through pain

Sun obscured by cloudsIt’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, becauSevern Bridgese 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 Spending time with Godthat 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…

Psalm 40 - 1-3

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.

Parallel journeys

long-road-into-the-sunsetThe 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 CT-scanmiss 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’

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