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 ‘Cancer and the family’

“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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Head and heart

rainbow-in-the-rain-2From time to time, some people coming within our family circle find our use of graveyard or black humour quite bizarre, before they key into it and understand that it’s been an essential part of walking through these last two years; that facing all that’s happened with confidence, punctuated with agony, but facing it with Christ means that the very worse that life throws at any of us, is far in excess trumped by Him. So when one of our children, commenting on the blue disability parking badge, bus pass, motability and various government helps that have been offered, said, “Dad, having cancer’s great…you should have got it years ago!”, we all smiled.

Or when a friend asked me for some advice on some matter a couple of weeks ago, and I replied, straight faced, “Sorry, but I’m only dealing in end of life advice at the moment”, he looked perplexed, then after a moment smiled, “Oh, you and your humour!”  We laughed. 

knowing-godBut I’m so aware that it’s with a real degree of equanimity and peace that I continue to face it all. And as I quiz myself and ask ‘why?’, my only answer is that it’s almost entirely due to Christ and the effect of knowing Him. There was one point in His ministry where He’d just given some very hard teaching which made many among the much wider group of disciples and followers (apparently numbering into the hundreds) grumble and which even offended them. It’s described how many of them simply turned away and stopped following.

But that’s Jesus. He doesn’t shrink back from saying things we need to hear, from speaking truth to us, about both us and Himself that might offend us; he even at times brings things into our lives that might be uncomfortable, even painful. It’s all for our ultimate best, comfort, growth…and His glory. So easily though we want to domesticate and tame Him and turn Him into some kind of equivalent to a polite English gentleman and in doing so, create God in our own image.

But on that day when so many turned away from following, Jesus turned to the disciples and said,

“You do not want to leave too, do you?” Jesus asked the Twelve.

Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life. We have come to believe and to know that you are the Holy One of God.” (John 6)

I suppose that’s where I’ve found myself too over these times, and afresh in the face of the news about my brain tumours, the increase in signs of disease around my body and the time frames my oncologist has given. The thought that there are now these tumours apparently multiplying in my body’s control centre is something that I always thought would be a source of huge anxiety and fear. But it’s strangely not been – more like reflection, calm and peace. I guess it’s because I know nowhere – no, more than that – I know No-One else to whom I can go except the same Jesus who asked the disciples that question that day. I don’t feel myself to be inspirational – only just “one beggar showing another beggar where to find bread”. Like Simon Peter, there’s no one else I know to whom I can go. It all feels to me like a ‘no brainer’…here’s God come down, long predicted from 1000s of years before that He would come, born in human form, who walked our walk, who stood nails-and-thornsin our shoes, who took my place of punishment for all my muck and sin that separates me from knowing God and, in love for me and us, died in our place – a great exchange, God’s life for mine, for ours – died, dead. And then to prove He’s conquered it and sin’s consequence, rose again from beyond death to prove it and to ever live and reign, inviting us to hitch our wagon to His, to bind ourselves to Him through repentance and faith, to truly know Him then as we experience His Spirit come live in us, giving us a new life and way…and into eternity. Unique. No one else like Him. As Peter said,

“To whom shall we go? You have the words of eternal life.”

So it’s peace and joy for the believer. I can just nod my head in agreement with St Paul in the New Testament and say with him,

“To live is Christ, and to die is gain”  Philippians 1:21

valley-of-shadowBut as many will know, reading my writing over these two years, the rub comes though when I, as ever, see and think about Catherine, Simeon, Tom, Joshua, Lydia, Ma and Pa, my sisters, brother and ….well, the list ripples out to precious other family and friends. The timing jars with my human sensibilities. We cry together, we talk, we share pain. But I’ve also found myself getting to the point regularly where I’ve said to myself, to Catherine and each of the children, that if Jesus is good and great enough to have beaten death and is strong enough to carry me safely over the threshold into the wonderfully described eternity that the Bible details, then He’s good, great and strong enough to carry them. To carry them through the dark valley of Psalm 23 we’re all anticipating…but also back out again, implied in the use of the word ‘through’, into the light. It doesn’t mean they’ll be smiling and happy within a short time…they are going to need more love, practical care, nurture and support than I can imagine (and I mention it here deliberately)…it’ll be a major rebuilding, which even now I pray into, often with moist eyes. That it’s such a regular part of Catherine and my pillow talk, I can’t tell you. Agony and anguish seeking to lay its head down each night onto peace.

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(Click to enlarge) I’ve mentioned the humour. We had some fun with my now discarded radiotherapy mask, thinking there was a certain resemblance to Edvard Munch’s painting ‘The Scream’, don’t you think?  And then I found it dressed up in the hall.

Last week’s five sessions of daily radiotherapy have brought that part of my treatment to a close. It was good going into it having had some re-assuring prayer times with both the guys from Grace Church one evening in the context of a living room communion and then a number of city church leaders who gathered in our garden with some anointing oil to again ‘lay on hands’ and pray for the effects of what could potentially do some damage. But arriving for my first session last Monday and then for the next four days, being screwed fast to the table, held down by my specially moulded head mask under the machine, was a strangely relaxing experience as the amazing machine using what is now a hundred year old X-ray technology (but a hundred times the strength and powered by the latest technology) passed around my head, irradiating my brain on both sides. The only sensations were bright lights coming at me (“Stay away from the bright lights”, good friend, Marc, commented later!) and then purple ones into my peripheral vision. It turns out that the purple is more likely to have been the effect of the X-ray on my optic nerve. It’s a strange thing to know that it’s acted inside my brain, but I felt nothing and still don’t, apart from a slightly red face and warm head. The fuller effect is expected to visit in the next few days and weeks as possible hair loss, discomfort, memory loss and difficulty concentrating. We now wait to see if the intended effect of it all – ‘re-setting’ the brain’s gatekeeping ability to keep the admittedly increasingly ineffective pembrolizumab/keytruda drug out –  will work. My routine drug infusion continues every three weeks until it may get to the point where it’s plainly doing nothing. That decision and moment be a line in the sand, a bump in the road, we’re having to talk about, not knowing how that will feel. In the meantime, as James Grier arrived at the hospital for my last infusion ten days ago, I laid my hand on the drug line as James, Tim and I prayed that, if Father would cause it, it would prove to be an effective dose. 

img_4106Meanwhile, so many have been regularly asking about Simeon and his broken pelvis after his motorbike accident. He’s doing pretty well, but remaining off his feet for eight weeks, getting bored and feeling cooped up in his – thankfully – single level, ground floor flat, with his motorbikes temptingly visible outside his window but frustratingly unable to be ridden. To help, hilariously he’s managed to buy a cheap mobility scooter to get down to the shops. He thinks it’s pretty fun and it’s given him some freedom…even though it’s something of a comedown from a fast 636cc Kawasaki road bike.

Such a gift it was to spend wonderful time with long term precious friends as Robyn & Peter Thew from NZ, Jo McNamara, Ben’s godmother from Australia came Version 2and then Rob and Di Shimwell – Rob, a former colleague – over a meal and evening. As wonderfully encouraging too and a proud time it was to watch Tom complete in the Cardiff Half Marathon on Sunday and then to help deliver Joshua over to Moorlands College near Christchurch in Dorset yesterday to start his degree in applied theology. Catherine, Lydia, Joshua and I had a special time of prayer on our bed the night before he left and committed him to the Lord as he steps into his next chapter of his life. Tim and Kathryn, staying here with us from NZ for the last four weeks, serving and assisting us so quietly and carefully, leave us this weekend and will be so missed. It’s been a gift having them share our home and journey.    

My prayer for so many people I try to lift before Father each day has been shaped by words I read again recently from Paul in Ephesians, chapter one, that God would,

“…give you a Spirit of wisdom and revelation so that you may know Him better” 

Seems a good way to pray for myself, for us, for others. 

“Drop Thy Still Dews of Quietness….”

img_0027There’s a curious blend of increasing inertia and yet deepening quietness that’s coalescing inside me at the moment. On the one hand, I’m so conscious of numbers of important and mainly family related things that I’m needing to do, one by one. It’s partly and largely spurred on by the five consecutive days of radiotherapy starting next Monday, 26th September. I’m aware that my cognitive functions, including concentration and memory, will likely be effected by it. There may also be some collateral damage caused to the wider area as the beam can’t be focussed too narrowly…a point for prayer. 

Consequently, a number of things lay at the front of my mind to sort.

But at the same time, aware that the cancer, particularly the tumours in my brain, seem to be progressing, I’m finding myself just more than ever, pressing into God – resting back into Christ – more and more “drawing deeper from the wells of salvation” and the resources He’s wonderfully provided for all who come to Him, remembering Jesus words, so familiar to so many…

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.

Last week, though, had some tough reckonings to deal with. On Wednesday, Simeon had a reasonably serious motorbike accident and broke his pelvis, as well as pretty much writing off his bike. He’s now out of hospital and back at his flat with good friends tending to him, but he’ll be incapacitated for 6-8 weeks. His beloved, reasonably new, bike was only insured third party, so he’s pretty devastated.

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Jeremy having the head restraint mould taken

Then, the following day, I was measured up for the head mask/restraint that I’ll wear during the radiotherapy next week. While there, I managed to spend some time with Andy Goodman, my oncologist. It was one of those sessions where I needed to ask him some straight questions, and Andy, so helpfully and carefully sat with me. My main question was time. Now that the tumours have reached my brain, what, from his experience is the likely time left? His very gentle responses…with no radiotherapy, maybe three months. With radiotherapy hoping for palliative effects, six months. If, though, the radiotherapy has the effect of bump starting the brain into taking the pembrolizumab (aka keytruda) on board, who knows. But I got Andy to reconfirm that he’s seeing that the drug is showing signs of becoming less effective around my body, so it’s therefore unlikely to have any effects in my head.

I guess, from the previous week’s news, I knew it already, but the sobering nature of the specifics of the timings, hit me again. It was a somewhat surreal experience then to walk from the Oncology Department into the Trauma & Orthopaedic Ward to see Simeon – to walk into his situation with my information. Strangely though, his has proved to be a useful distraction to allow mine to slowly sink in.

That night, as Catherine arrived home from the sanctuary that school is for her, we sat and talked it all through. The tears for both of us flowed. And then, later in the evening, I rang my sweet sister Anna in New Zealand and, again, with emotions fully exposed, shared it with her. I needed her to go round to Ma and Pa’s to tell them face to face. Phone, FaceTime or Skype wouldn’t do. That was for the next day.

And so here…here I am. Here we are. I’m feeling – more or less – as well as ever. In a bizarre new twist, I’m going off to the local gym five days a week for an hour. It feels great for this one who, to quote my late best man, Nigel Clarke, in his speech at my wedding,

“At school, Jeremy had the most amazing ability to avoid any form of physical exertion whatsoever”

Young plant

But all the while, I’m conscious – and more than ever – that I’m living with a reality that is drawing in. But in that reality there are possibilities that I don’t dismiss or ignore. Pressing into Christ, on those many promises He’s made to those who love and trust Him, provides Hope (capitalised deliberately) of the fullest kind. I’ve been stirred constantly by the Old Testament story of King Hezekiah from Isaiah 36 & 37. I won’t tell the whole story here (but if you click here you can read it) but suffice to say it tells of a major threat of disaster he, as King of Judah in Jerusalem, received from the marauding Assyrian emperor, Sennacherib. It’s initially verbal. But Hezekiah, after an initial grief reaction, tearing his clothes, seeks God, and receives through the prophet Isaiah, God’s stirring, strengthening response. By the time then a written threat arrives from Sennacherib, Hezekiah is calmed and ready. He walks into the temple, spreads the letter out before God and effectively says, “You, Lord Almighty are God, maker of everything, and over everything and are the only God, and God over all. See what this man is saying, insulting. You’re God, not him. Over to you” . St Paul writes that one of the reasons that Old Testament events were written down was that they were to serve as examples and warnings for us. And as the account of Hezekiah runs on, it’s spine tingling, and has provided me with such encouragement as to what God has done, what He can do, but more than that, who He is in the face of any danger, threat or loss for any of us. It’s not necessarily promising me deliverance from this cancer, but it is reminding me that something – Someone – else has the final word. And that Someone was the same One who stood in full glory after His resurrection from the dead and said,

“Do not be afraid. I am the First and the Last. I am the Living One; I was dead, and now look, I am alive for ever and ever! And I hold the keys of death and Hades.”

Of course, it’s the Lord Jesus Christ. The final Word.   

As life moves along each day, He’s giving us a ‘normality’ and peace. It’s been great having Tim & Kathryn Handley with us from New Zealand, both here as journeying friends, and acting as my driver and our help around the home. We returned Tom to Cardiff for his final year last week and Lydia heads off to her college placement at a local children’s nursery each day. Joshua prepares to head off to Moorlands Bible College in a couple of weeks…do please read the new piece he’s written on the column alongside this one. It so encouraged me.

All the while, I find myself both drawn and drawing deeper, during the day (sometimes in the early morning hours, lying in bed) in prayer, in worship, seeking to deliberately “practise His presence”, as things move on.

“Peace I leave with you; my peace I give you”

And He is.

   

Milestone, curls and fresh challenges

I’ve just arrived home for the second time today from the oncology department. Once for a clinic and once for my fifth infusion of pembrolizumab. It’s a world of which I used to know nothing, but is now such a regular part of my life that I can know and laugh with many of the staff, and many of the department patient routines feel so familiar to me. I saw Dr Ayman Nassar for the last time this morning in clinic before he moves away to take to up his new immunotherapy research post. It was good to be able to thank him for his expertise as well as his very particular care and companionship on this journey…he will be missed.

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Out for my 50th with all the family (click to enlarge)

It’s been a quiet couple of months in terms of needing to post updates – something of a good sign with melanoma which, as many will know, can move with a rampancy and offer, as my oncologist said early on to me, a normal life expectancy of 8-10 months from diagnosis. To have been able to have celebrated my 50th birthday last month – something which 22 months ago was an impossible milestone to have considered – felt good.      

This morning, I received the results from a PET scan I had last week. They contained both positives and some possible causes of concern. The radiologist summary report refers to “disease progression”. Some of the existing small tumours under my skin, whilst they haven’t grown, are showing some signs of fresh metabolic activity and there are also fresh small tumours – some I’ve been aware of on my torso –  but all, it seems, are either just under the skin or in non-threatening places inside. There’s also a possible one in the bone of my skull for which an MRI scan has been ordered. Ayman assured me that it is a satisfactory result and one which falls within reasonable and expected parameters for response to pembrolizumab at this early stage in having it.

Rachel & MikeI think, having felt fresh lumps in the last little while, Catherine and I thought there might be some things for us to deal with. I think we realise that it’s always a possibility and it’s been freshly sobering. Then the death of Rachel Partridge, wife of my (until-recently) colleague Mike Partridge, two weeks ago had a similar effect and reminded us of what we’re facing. Both she with her leukaemia and me with my melanoma, jokingly referred to each other as “tumour buddies”…she was a special lady and one whose journey through her illness touched many people. She’ll be missed, not the least by Mike and their children – Felicity, Will, Ellie, Bethany and Hannah. 

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Lydia, me and my curly hair

My reaction to the pembrolizumab, in terms of side effects, continues to be negligible. Apart from the now-not- so-regular bouts of extreme fatigue, a funnier one has been that it turned my hair curly with no warning and without it having to fall out. It caused no small amount of hilarity in the family, Catherine loved the new look. I’ve since had my hair cut very short, and that was only a few weeks after I lost my beard of 20 months also.   

The lessening of the fatigue has allowed a month or so of fun in the family with the great summer weather. With it being my 50th, it was wonderful to have my parents and brother from NZ and Canada respectively there for it. Catherine and I were able to have a big joint 50th party at home with many old and local friends; Ma, Pa, Catherine (sometimes) and I were able to enjoy some great trips to Cornwall and London…but we also went sailing across Torbay and beyond with old friends Steve and Liz. We’ve watched Simeon ride in the off-road Enduro motocross event on his KTM motorbike, see Josh perform at a public event in Honiton as well as him and I go to the Goodwood Festival of Speed in West Sussex. I was able to accompany Tom to his placement in London at the Centre for Social Justice, as well as us spend time with old friends from the distant past either at home or away. Among some of our walks and visits, Catherine and I visited the National Trust’s Coleton Fishacre in south Devon, the old Coleton Fishacre‘Art Deco’ style home of the D’Oyly Carte family of the opera and Gilbert & Sullivan fame. We’d been there with the children twice many years ago and I had many clear memories. But it proved to be yet another unexpected ‘tripwire’ grief moment for me. It was a combination of discovering that the D’Oyly Cartes had lost their 21yr old son in 1932 in a road accident, and walking in the garden knowing it had been a place of huge grief and suddenly seeing places Ben had been and a spot where we’ve taken a family photograph in 2000 that saw me so utterly undone and tears for both of us flowing in a fresh wave. It was right…it had to happen, it was all part of the grief that’s working it’s way through, inside and out, round and about. I felt better for it. But there’s no time limit to it and to when it can strike.

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Click to enlarge

In those times over the last few months when I don’t find prayer comes too easily – either through my own lack of words, I’m grateful for the daily “Bible-in-a-Year” reading Bible in a yearapp on my phone which can take me to a place where I see not only the utterly amazing characteristics of God – each day with a psalm, an Old Testament and a New Testament reading, I can see His holiness, His faithfulness, His love – that I can pause and use them in even a brief prayer back to Him in thanks, or a time of quiet worship for who He continues to be there for me, for us, no matter what I might see.

Bible promisesI continue to “wrap up” those things – people or situations where we long to see change – within the character and promises of God. I had a fresh reminder about it last Sunday at church when Mick Taylor from Citygate Church in Bournemouth (listen to the whole thing here) helped us consider Abraham in Genesis 18 as a pattern of how we can do that. We considered particularly when God shares with Abraham that he is planning on destroying the appalling wicked cities of Sodom and Gomorrah. God was under no obligation to tell Abraham about this, but He appears to do so to prompt Abraham to engage with Him. Abraham hesitatingly, yet boldly requests God to consider not destroying it if he finds 50 righteous people there, and Abraham concludes his request saying, “Will not the judge of all the earth do right?” In other words, Abraham was appealing to God’s own righteous and good character to do what is right. And God agrees with him to relent if he finds 50. But Abraham boldly pushes on to 45, 30, 20, 10 people in the cities. It’s about a degree of boldness and taking seriously what we come to understand of God’s character as we read of it in action in the Bible. So, for us today, an example might be for us praying for a friend, family member, or a former church member, who has walked away from God for whatever reason. We can (knowing the Lord Jesus Christ who describes himself in the New Testament as the good shepherd and who leaves the ninety-nine sheep and goes in search of the missing one) wrap up your concern for the person or situation in the character and promise of God and bring it to Him in prayer. “Lord, I can’t easily bring them back, but you, good shepherd, have promised to do just that. Please Lord, go after him/her… please do that”    

“Will not the the Judge of the earth do right?”

…I have continued to use that line over the last year or two as I pray regarding this disease in my body and where it might lead, considering Catherine, my children, my parents. Trouble is, we don’t always know what ‘right’ is. Sometimes it’s “Yes”, sometimes “no’, sometimes “wait”. But whatever, I remain peaceful in my situation for whatever outcome. If Christ can have beaten our ultimate enemy – death – and can usher me into His wonderful eternity, He is more than strong enough to look after and meet with my precious ones left behind me. But I pray on, sensing to remain for the time being might be best…

God’s Different Economy

Barometer 2Whilst staying in a friend’s home recently, right outside the bedroom door hung an old barometer on the wall. It’s now just a couple of days on from my second infusion of pembrolizumab, and I find myself thinking that if life and wellbeing could be measured on a similar kind of instrument, this last month would have seen the dial spinning around pretty wildly. These last two weeks have seen huge joy as we were able to spend time with many old friends as we revisited our former home in Upton on the Wirral. Then Tom has just passed his driving test. Fantastic. But at the opposite side of the dial, within six days of my first dose of pembrolizumab less than a month ago, I carted myself back into the oncology department feeling terrible. Feverish. Night sweats. Extreme bouts of fatigue which kept stopping me in my tracks, reminiscent of the Duracell bunny advert. I was tested and examined and told that everything was within usual parameters of possible side effects. Reassured. But all the symptoms, apart from the fever-like feeling, have continued and are now joined by aching legs that continue to awaken me throughout the night. But worst of all, my tumours – particularly the one on my neck – suddenly grew within days of the first dose, possibly because of the previous drug being withdrawn and pembrolizumab taking time to settle in. The response it elicited within me, Catherine and the family was one of mild alarm. All the brakes seemed to be off and we were starting to career, out of control it felt, down the hill.

Jeremy - tumour comparison

Click to enlarge (the photo…not the tumour!)

Remarkably, however, in the last ten days, the tumours – particularly the one on my neck – have now suddenly reduced in size in the most amazing way. You’ll see from the two comparative photos. I know pembrolizumab has had some significant results worldwide, but even Ayman is impressed at the speed of response seen in this tumour. Then I also remember the army of thousands around the world who’ve picked up my story and have said they’re remembering me before my faithful saviour, Jesus.

Clerical shirtAs I’ve been reflecting on the whole thing, especially when my neck tumour swelled so enormously, something struck me. Precisely where the tumour is, I used to wear (albeit irregularly and sometimes uncomfortably, preferring the more informal look) my vicar’s clerical  ‘dog’ collar – a sign, a mark, a symbol of a particular kind of ministry in many Christian denominations.

In a curious way, it seems that the tumour is a kind of strange badge of a new ministry into which Father God has called me and Catherine as we share our story with others. That in God’s different economy of things, rather than it being a ministry ‘limiter’, this cancer – and even losing Ben, as utterly painful as that continues to be – has opened up a wealth and controlwhole vast array of opportunities to both know and testify to God’s amazing grace, His timeless enduring promises, the profound hope and strength He gives through Christ when the night seems at its darkest and the days can seem utterly devoid of light. That when the world around us celebrates wealth and power, strength, confidence and health, God’s different – even strange – economy turns all that on its head and whispers in a still, small voice and through the pages of the Bible, that real prosperity, peace, security, purpose and hope are found somewhere else – through knowing Christ. And that difficult, dark seasons can perversely provide space and opportunity to know and rely on Him in even deeper ways. As I was reflecting on it, I thought of Bible characters Jacob & Paul. Jacob was the grandson of Abraham and son of Isaac. He was a sheer deceiver. Cheated his brother. Lied to his Father. A stealing schemer. Yet one night, as he was sleeping alone by the river Jabbok, resting during another of his schemes, Genesis 32 records a strange incident where he Jacobfinds himself wrestling with ‘a man’ through the night. As the story unfolds, it’s clear he’s wrestling with God himself, something he’s metaphorically been doing all his life. The fight lasts into the dawn and when his unearthly opponent, unable  – deliberately perhaps –  to overcome Jacob, touches his hip, it leaves Jacob with a limp for the rest of his life. But it’s a moment of inner change for Jacob, and he’s given a new name – Israel – and his life from that point is on a different trajectory with a new priority which although imperfect, was symbolised by his hip and limp. In God’s different economy, the dislocated hip rather than failure and loss, represents a new ‘ministry’, new-found strength through weakness, of knowing God and reliance on Him.

Then Paul. At one point, the great apostle taking the message of new life in Jesus Christ with such a profound effect, spear-heading the spread of the gospel into the known world, is inflicted by what he refers to as ‘a thorn in my flesh, a messenger of Satan, to torment me.’ It’s not at all clear what exactly it was. But three times he pleads with the Lord to take it away from him. And God’s response?

Power made perfect in weakness‘My grace is sufficient for you, for my power is made perfect in weakness.’ (2 Corinthians 12)

Rather than it becoming a hindrance to Paul, it seems to become for him a reason for thanksgiving, a badge, a sign of his ministry, a way through which he knows Christ, something which he even embraces as he falls back in reliance on Christ’s strength and power more than ever. It emphasised to Paul the unmeasurable depth of resource and strength available to him, to us, through God’s powerful grace – his unmerited riches and favour –  there for even the simplest and weakest believer. That in God’s different economy, those things we might at all costs want to avoid, to run from – weakness, powerlessness, illness, exposure, even an unravelling life –  can be precisely the ways and means God sometimes – often even – uses to introduce us to His higher ways and incomparable riches, the things He uses for our blessing and benefit as well as ways we can testify to the power of Christ in us to others, realising we all live through painful, sad and difficult seasons. That suffering can be a springboard. That suffering can be redeemed, that dirt can be transformed into diamonds. Whilst it’s true that He might not have caused whatever dark situation we’re living with – I don’t necessarily attribute my cancer to Him – He can nonetheless use them for our benefit and His glory. God’s different economy.

The verse from the old hymn which contains the line that gives my blog its title says…

” O joy that seekest me through pain

I cannot close my heart to Thee

I trace the rainbow through the rain

And feel the promise is not vain

That morn shall tearless be”

In God’s different and ‘strange’ economy, both pain and loss, weakness and illness, suffering and hardship are not the end of the story for the one who’s made Christ  – God’s way home for us – their treasure. That through His suffering, Christ entered into our suffering. Because of Christ’s taking on human flesh and His death – God’s incarnation and slaughter as the sacrificial lamb in our place to entirely cover and atone for all our muck and offence – and because of His resurrection from the dead – God’s stamp of approval that full satisfaction for our offences had been provided, that He’d conquered it and that therefore death could not hold Him (or anyone trusting in him) down – because of these enormously precious things, there is a ‘morn’ coming that ‘shall tearless tearless morningbe’ for all who’ve clothed themselves in Christ, made Christ their treasure, who’ve placed the weight of their life’s trust on Him. There’s an eternal  morning coming when all tears shed in life – tears because of hardship following Christ, but also tears shed because of the effects of living in a broken, sin-scarred world where loss and heartache exist – those tears will be wiped away by God Himself. And our eyes will, on that morn, become firstly unclouded then opened to see the inheritance, the place He’s prepared for us. And we’ll see Him, still with the wounds in His hands, in His feet and side, standing in front of us, face to face. It’ll all be well. So well. It’ll all be worth the wait. Worth the pain.       

To quote Ben from his one entry here on the blog

“However, I realise that, one day, I will see (Dad) in Glory and together we will celebrate what we have gained through Christ. Bless the Lord, my soul cries out! The good news is that if you’re reading this and you know the Treasure that is Christ, you can have the same confidence”   

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.

Hurdles and Tripwires

 

IFTE-NB-001787As a child, I used to love having fun in our garden with my magnifying glass, focussing the sun’s rays on all sorts of things – dry leaves, fire crackers, patches of grass – and watching the sometimes fiery effect. Drawing all that light and heat, directing it onto one spot, was enormous fun for a curious, if not somewhat mischievous, ten year old boy.

Whilst last Thursday wasn’t what I would call great fun, it was a day that did see us at times smiling and laughing. But it was a day that felt like lots of events were being focussed into a magnifying glass and concentrated into one place, one day. As well as it being the first anniversary of Ben’s death, it was Joshua’s 19th birthday and the day for receiving results from my latest PET scan of the previous week. Time gently propelled us from one event to another through the day. A walk mid-morning near Broadclyst with my parents-in-law to the spot where, on the 27th December 2014, Ben suffered the seizure that led to his four month hospitalisation, was followed by a family pub lunch. Onwards then we went, in the early afternoon, to the hospital for my results followed by a visit to Mardon House, Ben’s home for his last 3 months, to leave some memorial flowers. Lyn, Bernard and the staff welcomed us so warmly and as we sat over a cup of tea with them, so many recalled how special Ben had become to them while he was there and how they still remembered him so fondly. We were able to spend a few quiet moments alone in his old room at Mardon – and in the space where he breathed his last breath – and let some tears fall.

After a visit to his grave to lay flowers, we managed to affect a change of gear and the day concluded with a good evening around the meal table with some close friends of Joshua joining us to celebrate his special day.     

Jeremy PET scan

Me in the PET scanner…a mobile one in a lorry trailer, contracted by the NHS that moves around the major hospitals in the south-west. The scan takes 45 mins

At the end of it all, we were tired, somewhat relieved, but thankful to Father for the way we’d been held. We felt the day had been marked suitably and that we’d done well. The fact that my scan results were generally positive helped matters enormously for us all. Using the very obvious tumour on my neck as a ‘marker’, it seems that there was an initial general shrinkage in most tumours in response to the Dabrafenib capsules over the weeks since February, but now the drug has started to loose its effect and there’s been an expansion again over the last two or three weeks. The result is that they all appear to be increasing again to their original sizes. Consequently, the scan showed everything more or less as it was on the previous one in January. The good news however is that there’s no evidence of anything new, and what tumours there are don’t currently appear in any life-threatening places. I’m now scheduled to start my new immunotherapy treatment on Friday 13th May. Although the new three weekly infusion of Pembrolizumab will mean careful event scheduling in our family diary – time away, holidays etc – I certainly won’t miss the current twice daily timetable of swallowing capsules as it’s limited when I could and couldn’t eat.

Care for the FamilyTen days ago, Catherine and I were able to attend a day in Worcester for bereaved parents organised by the superb UK Christian charity, Care for the Family. It was a heartening experience to be sitting together with others, all of whom were parents who’d lost a child – some in childhood, some as adults, some specifically to suicide. Sharing together in our smaller groups through the day, there was an unspoken understanding from all to each of the journey we’re together on. As Mike and Kath Coulson, leaders of Care for the Family’s HurdlesBereaved Parent Support spoke, they helpfully named something we’ve experienced both since my diagnosis and Ben’s death – hurdles and tripwires. The hurdles are the events you can plan for – anniversaries, Christmas, birthdays – times you know are coming and which you know will probably be difficult, but strangely can be relatively alright as you’ve braced for them. It’s the tripwires however you can’t plan for…they’re the problem. They’re the ones you can’t anticipate. A smell. A sight. A piece of music. A place. A word. And suddenly a strong memory appears and grief just catches you out again. For Catherine a few weeks ago, it was seeing a small boy wearing dungarees. She remembered four small Clark boys, including Ben, wearing them. She was so unexpectedly tripped up. And no one would necessarily know.

tripwireWe’re looking forward to the continuing get-togethers with these precious folk…it was so timely ahead of last Thursday’s anniversary. As we returned home to Devon that evening, we called in – invited – to Sam and Kirsty’s wedding reception in Nailsea. Sam had been one of Ben’s best men, and Ben would have been one of Sam’s. It was so great to be there to see them both. Sam had been such a loyal, close friend over many years. But I had to catch myself and swallow hard at one point as I saw a few of Ben’s old friends – many now married – and thought, “Ben and Dabi should have been here today. Why, Lord, why?” As I’m writing this now, my jaw is clamping and tears are forming. Tripwire moments. And if it’s me, it’a also numerous others in their losses…especially I think of the number of lovely people we met last Sunday when we spoke at Christ Church, Woodbury who’d lost children. It was a privilege to have them share with us afterwards and know a quiet understanding between us. But I also think of special family friend Carol, whose husband Neville, my godfather, died suddenly very recently. I particularly remember conversations out over coffee with him on my visits back to New Zealand over the years. I shall miss him.

Cereal with Strawberries and bibleAs Catherine and I sat with our good friends Matt and Louise Wilcox over breakfast last Saturday morning, having had them stay over with us the night before, we all read from the second chapter of John’s gospel in the Bible the account of Jesus at a wedding in Cana where he turned water into wine. As we pondered it, Matt remarked how noticeable it was that Mary, Jesus’ mother, when they ran out of wine, simply turned to him and said, “They have no more wine”. After what seems like a rebuff from her son in response, she quietly turns to the servants and says, “Do whatever he tells you”. And what follows is a sign that points to His identity.

But why the initial word from her to Jesus? Matt helpfully highlighted the sense in which it seems Mary knew. She knew whatever the situation, Jesus was bigger than it. For a couple getting married, Jesus saved them from the social shame and stigma within their culture of a ruined wedding party. But more than  that, there’s no situation, no loss, no lack, no grief, no nothing that ever catches Him out and leaves Him incapable to help, to be alongside us even when it seems to be in the darkest place, to give solace, hope, to transform, to forgive, to renew, to be what we need Him  – Emmanuel, God with us – to be.

He’s our continuing strength – our life. 

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.

A celebration, a loss and some soulful music

Autumn in Haldon Forest, nr ExeterI was thinking today that this was an autumn I wasn’t expecting to see. This time last year, I really thought the leaves would be falling and I wouldn’t be here to see either them or even the entire summer we’ve just had. The different perspective on life and living that it brings is noticeable. Relationships have deepened and various friendship ties that might have become loose have been strengthened. Priorities to which I might have paid little more than lip service, have become more plain, even urgent. It feels like a fresh flowering of life.

Educational aidsIn the middle of that flowering, we had wonderful news late Monday afternoon that following an interview, observed teaching and planning sessions, Catherine had been appointed as the permanent, full-time teacher in one of the Early Years Foundation Stage classes at the primary school in which she’s been working for the past year. It’s fifteen minutes drive from our new home. The joy was tangible as we stood hugging each other, both struggling with our emotions. It’s been an eight year journey for her to reach this point with no small number of knock backs – along with some encouragements – along the way. If Father’s timing is said to be perfect, here is another example. Just when I’ve stepped back from my regular paid employment and the need is there, so is God’s provision. Paul’s words to the Philippians show themselves true again as I read, “Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving, present your requests to God”. Those answers might not come as quickly as I want; some prayer might remain apparently unanswered as Jesus has something better for us. But He hears and he acts. And so we pray on, holding our lives and our broken world – including fleeing, desperate Syrians,Iraqis and others – before Christ.    

Piano keyboardIt was a privilege to travel down to Plymouth some weeks ago, to be in a studio for a live recording session as one of Ben’s best friends, Samuel Chapple, laid down a number of piano tracks for an album, among them his arrangement of Amazing Grace, arranged, played and recorded as a tribute to Ben. I’ve included a link to it at the bottom of this page. When we find ourselves in a broken place, it’s a truly beautiful piece of music and we’re so grateful to Sam for this way of expressing his love and affection for his friend.

Ben & NigelBut just as I prepared to write and post this entry, I’ve learned of the death of a friend who was one of my closest during my teenage years, through my twenties and beyond. Nigel was, until illness overtook him last year, an associate professor in Sydney lecturing and researching neuromuscular diseases. He and I were at kindergarten together, lived in the same street for many years, attending Christ’s College, cycling to school together, both playing in the school orchestra (he was a great flautist), shared employment both as scrubs cutters and gorse sprayers in Pigeon Bay near Christchurch and then on a road gang installing road signs in Essex in 1989/90. He was my Best Man as I married Catherine. As well as sharing a surname (his with an added ‘e’), we shared many fun and memorable times. I’m only sorry that in recent years, because of the distance and, more latterly my own health, I’ve not been able to see him as much as I would have liked, but we had been in as much email contact as we could both manage in this last year. We had shared the irony of the fact that we were both now facing serious life threatening conditions having shared so many other things in life together. Sadly, both his chemotherapy and immunotherapy treatment proved to be unsuccessful. I’ll miss him. The rather precious photo (click on it for a better view) shows him with Ben on his lap reading him a story at our home in Auckland in 1993. The bitter twist is that they’ve both left us in the same year. I’m filled with a fresh sense of sadness.

As I watch Sam play his rendition of Amazing Grace in tribute to Ben, I also think of Nigel. God’s amazing grace given through my constant companion, Jesus Christ, has given me so much for which to be thankful. It was grace that extended to both Ben and Nigel. They were a gift to me.

Sam has wonderfully included a short tribute/ascription to Ben at the end of the video. 

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.

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)

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.

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