Gone upstairs

a personal journey through grief and change


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Dying no more

It was when the nurses washed him that his breathing changed. We were all in the kitchen while they did the morning bed-bath, but I peeped through a crack and saw my beautiful naked son being gently washed in the way I had been taught as a student nurse nearly 40 years before. A minute later they covered him up and called us into the room: “His breathing’s changed, you should come in” Was this ‘it’?

We all swap places – the nurses leave us round his bed.  Becca and I stand on Sam’s left, Martin and Sam’s grandad on his right, holding his hands and arms. His eyes are closed, his face composed, but he is definitely struggling to inhale and exhale. How hard to let this process run its course – how can this be happening? Hardest for the medical man who had been trained to bring people back from the brink… But Sam has a red sign in the kitchen saying “Do Not Resuscitate” – the brain we cannot see has already done it’s fatal work. Despite that fact we speak  our love and comfort to him, not knowing if he can hear us: it is our only way to say goodbye.

Within a few minutes his breathing stops… “the breath returns to God who gave it” “Into Your Hands we commit his spirit”. His pallor gradually turns to blue, then purple – there is no oxygen in the blood but his strong, young heart is still pumping it round his body. Oh God! It is too much – his head and shoulders rear up from the bed and we all jump. Martin says, “Don’t worry that is normal” – death throes as the body relinquishes it’s life, so horrible to see it is still the worst moment of the whole thing. He falls back to the bed lifeless and all colour quickly fades to white, then waxen…

Dying is nothing like death itself. Dying people are still with us, but death means GONE. It is a totally different feeling – even though you know it is coming you cannot really prepare for it. Sometimes people talk of heavenly experiences, feeling there are angels in the room to guide the loved one home, but for us it wasn’t like that at all: Sam’s death was traumatic despite his unconscious state. The hands we continued to hold went cold. Rebecca in her terrible distress immediately left the house to go and cry in her friend’s arms. Martin’s dad went back into the kitchen to make tea. I looked at my watch, to know the time of death…

We all react in different ways. I am sure Martin was weeping. I sat very close to the bed and put my cheek on Sam’s. It was cold and the skin had changed: he was a corpse. I whispered my love one last time, but there was nothing to be done: Sam Dyer had left the building. We relinquished his body to the nurses for laying out, dressing him in his favourite tee-shirt and shorts for his long sleep in the earth.

I was numb: now there were things to do. I went straight to the funeral directors to get advice and organise what had to happen next – but I’m not going to write about that now. (See this post for the overview I did write one month later when at last I felt able to communicate something.) I left Martin waiting with the body for the doctor to come and certify the death. When he came our lovely GP cried over the loss of a young man who had been so full of life…

That was the question uppermost in our minds: What had happened to all that life? That strong spirit? HOW could it just be snuffed out because it’s container had worn out? Surely we believed he had gone into the spiritual realm – to meet God?  But what actually does happen when we die? Where was Sam now? It made me cringe when well-meaning friends said things like “he is safe in the arms of Jesus” – it seemed so unreal, wishful-thinking, imagination, generic gobbledygook – no comfort at all. It doesn’t say anything like that in Scripture! However, something that really did help, was someone who didn’t know us at all who had been praying for us – how amazing is that on its own? – who had a vision of Sam drumming his way into heaven with great joy and gusto! She had no idea he was a drummer… I loved that! 🙂

It is all so much a matter of faith in things unseen, convictions being tested at the point of crisis. All we really knew for sure was he was and is no longer with us… But we refuse to use words like “passed or passed over/on” “gone into the next room” – yuk! things that take the finality out of this loss. It has to be called by it’s name: DEATH.  St Francis called her Sister Death – a close companion through our lives, a friend who takes us in her arms at last, a rest after a weary, long day. And we admit Sam’s death was a release for us as well as him.

In fact we do not begrudge the timing, his young age. I’ve blogged abut these last 10 days because they were so amazing and full of grace. It was a good death! He lived his 27 years to the full and had many great experiences: he used to say so himself. He told his sister to say at his funeral (and I quote!) “Fuck you, I went to Hawaii!” – which of course she was delighted to do! He also used to say he was actually glad all this had happened because of all the good that had come of it – the healing in his own life and in our family! Acceptance has to come if there is to be any peace in life  – and in the end it is all about this, from Fr Richard Rohr:

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At the time I needed something to hang onto and the gospel story about the thief on the cross next to Jesus came to mind. As they were both dying, this man said to Jesus, “Please Lord, remember me when you come into your kingdom!”  and Jesus’ immediate response to this wicked man – who had simply acknowledged that He actually had an eternal kingdom and nothing more – was “Today you will be with Me in Paradise” Sam did acknowledge my Jesus, despite all the other paths he also took. Apart from that I know that my God is Love and that definitely includes my children as well as – in fact – I believe it includes the whole world. Unless someone downright refuses, they are given access…I cannot help believe Sam is ‘in’! As a wise friend said to us later: Sam is in our future

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“Goodnight, sweet prince, and flights of angels sing you to your rest”

My son is dead, long live the memories – my baby boy, our cheeky little lad.

I cannot list the precious moments that I treasure in my heart: “My mummy, my best thing” he said at nearly 2 – “I love you mum” he vowed before he died.

Now he lives on, his childhood laughter, mimicry and humour, that quirky character and stubborn will – his face in photographs and dreams, held in our hearts.

 

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Our son is dead, long live the legacy – our drummer boy, so totally unique

His struggles and the anguish of his youth, a life cut short, the battle that he bravely fought out in the public gaze, his words and love and courage stamped on many lives.

They still live on – online, on You Tube, TV and in print – a shooting star that blazed across the sky and fell to earth.

 

My son, my dearest Sam, is dead – long live the LOVE

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Into unconsciousness

Monday 24th November – the day Sam began to leave us. These last 2 posts are going to be pretty hard to write… Over the last week the blogging process has done its work in me, uncovered buried anger and enabled those  suppressed tears to flow. Looking back at my lovely, infuriating son has been both a pleasure and a pain – but now I must say goodbye to him once more. The end of Sam’s story is unavoidable – none of us can escape death no matter how long we defy it.

I think that is partly why I want to write about it – to force other people to look it in the face, accept reality and their mortality. We live in the one part of the world and the one time in history where we do not have to face it regularly so we almost forget it is there – something to be considered and planned for – until someone close to us or perhaps someone famous dies. Death horrifies us and we fear it – even those with faith in life beyond seem to avoid it at all costs. Sam was not afraid, though part of him was still defiant and in denial – he was ready to go into Spirit, as he would have put it – or even just to go to sleep if that was all there was. Of course he wanted to live, to follow his dreams and fulfil his potential… isn’t the loss of all that the problem, isn’t that what dying is all about – letting go?

We had to let go as well. On Saturday we had committed his spirit into God’s hands and now we had to go through the process… It was the last night of the nurse watch-women – they only cover the first 5 out of hospital. I don’t think they reported anything different when I arrived, but I soon foundimg_2833 that Sam had a bad headache and felt sick again. He was really suffering and I knew it was time to call the emergency number for hospice at home…

The nurse arrived quickly and set up her station in the kitchen. She was kind and efficient: it was a relief. I was sent to a local chemist in a backstreet somewhere to collect a pile of controlled drugs while Martin sat with Sam. He wasn’t talking much, but that must have been when he said “I wanted to show you a man who defied death” They were, appropriately enough, his last words to his father.

Martin phoned to call his own father, brother and Becca back to Loughborough but it would take them 4 hours to arrive. When I got back with the medicines the hospice consultant had arrived as well – the little house felt very full. I sat down next to Sam and held his hand as he waited for relief. They were drawing up morphine and an antiemetic to give him when Dr Feathers called through: “We can give some steroids as well if Sam wants it” Sam heard that, looked at me and forcefully delivered his last words to me: “No Dex!”

img_2834I went into the kitchen as the syringe was administered, into his left arm. He could obviously still feel on that side because he complained loudly when the needle went in! The morphine quickly had an effect and he seemed to go to sleep. I sat down with him again. It wasn’t long before I thought I would check his pupils – I don’t really know why. He was peaceful, breathing, looked comfortable. But I found his right pupil fixed and dilated while the left one was small. Immediately we knew the tumour had bled once more and this time fatally: his brain had given up – he would not wake from this sleep again.

The saddest part was that Rebecca had not been able to say goodbye. He had called her on the previous evening but she had missed the call and Sam was already unconscious when the family finally arrived. Not that any of us actually said goodbye: Sam did not know what was happening and simply slipped into a sleep that took him all the way down into darkness… or light?

When is the moment of death? He was still breathing, his heart was strong. We had to wait for final breath and heartbeat: our vigil had begun. Of course it all seemed unreal. Dad and Richard were in the kitchen with the cats and newspapers. The nurse called a colleague to lift him and turn on his side. Becca called a friend to come and we called our lodgers. Young Ben came to join us and wouldn’t leave… So much love and support, texts and prayers, grace and peace. Scamp sat on Sam’s bed and went to sleep next to his master’s legs.

I can’t remember the hours of that afternoon and evening. We must have eaten, talked together, sat and drunk endless cups of tea around the prone shape of our son. We talked to him, not knowing whether he could hear. The nurses were endlessly comforting as they cared for him. Eventually Dad and Richard went off to stay in a B&B and the 3 of us were left – with Ben, who refused to go home to Burton St. He slept on one of the sofas and we 3 squeezed into Sam’s bed upstairs.  I prayed we wouldn’t be in limbo for too long.

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Sunday

It’s Wednesday 23rd November, but I keep thinking it’s the weekend because it was…2 years ago. I am travelling in both time zones at the same time, re-living the emotions, seeing my son’s face in the air in front of me. This is what I wanted to happen – to bottom out some of the stuff I have ignored and find out how I really am. 2 days ago I woke upblogger realising I’d buried so much anger – for years, since childhood when my mother died and I just had to get on with life without one.  Anger was a fearful thing, not allowed… my father held all the rights on that one, losing his temper and shouting at us until that is all I can remember. I was saved when I was sent away to school… But I buried the cry.

So the motherless child also loses her son – plenty to be angry about! But no – I have accepted it. This happens in life – other people have a much worse time of it… of course they do. I have nothing to complain about, my life is blessed and I am loved. Grief doesn’t know this. Anger has to have it’s part – resentment that it isn’t fair has to be felt and acknowledged before it can be dismissed… So there it is: I can name it. I lost 5 years of my life to Sam’s brain tumour, worrying, trying to help, caring for him, being a servant and sounding board. He was often nasty to me – to us – resented us, blamed us… “You brought me to Loughborough and I hate it!” “You sent me to school!!” “You hit me!” – sorry, that’s what we were taught to do back then… 😦 “You argued with Rebecca and frightened me!” Sorry, sorry, sorry… that’s all parents can say. We can’t change any of it, please forgive us...

We were reconciled before the end. We were forgiven and forgave. Only now I recognise some of the cost to myself, but I bear no grudges toward him: to face childhood hurts is to grow up. I am not angry with God – but perhaps I am angry with myself…? Whatever it is, I choose to release that resentment, recognising that many of the choices I made were exactly that – my choices, me trying to make things better. No-one made me a slave to his suffering: yes, my life was forever changed, but it’s alright – I’m OK and I still have some life left to live…  Life isn’t fair and shit happens – get over it. Processing, processing, the little wheel is turning in my soul as grief works it’s way out… I see his face in my mind’s eye – the pictures I have posted here – and I can weep at last.

On Sunday we were getting very near the end – but we had no real understanding of that. I spent quite a lot of time with him – he was in a good mood, wanted to talk about The Imitation Game, what it was like to be so intelligent, socially awkward, misunderstood… Sam wasn’t gay but he felt ostracised for all sorts of reasons. I’m sure had he not had this disease he would have been brilliant at something: I’m also sure he would never have fit into society, had a 9-5 job or been in any way ‘normal’! It is so painful to me to know how he felt as a child, bullied, rejected as different – how he would hide in the library from the other boys and simply couldn’t accept the system. How could we know what was going on inside that brain when he didn’t tell us? When we moved to the Midlands he hated the Grammar School – which was opposite our house and we thought would help him achieve what he was capable of. He couldn’t stand the uniformity and ambition and tradition, the sports and forces afternoons… all those fees for 9 GCSE’s and an angry young man! Yet he found a way through it all and was at peace before the end: for that I am eternally grateful.

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He transferred to the local college for 6th form and eventually found a couple of friends who suited him far better – James and John. James had been to the hospital on the first day and back to the house a couple of times since. This is John, visiting Sam for the first time for 2 years. They were so happy to see each other! Sam used my computer to show John what he’d been studying about business and presented a small (but large!) hard-drive: “John, this contains everything I need to get my multi-million dollar business off the ground!” Maybe it did – he had been collecting material for long enough. Not many days later I put that disc in an envelope marked with his registered company name: AIRBORNE MARKETING, HEAVEN and it was buried with him.

Meanwhile, he hadn’t forgotten it was Sunday, the day of our agreement, and rather sheepishly said that actually this bed in the front room was rather convenient and cosy! In the afternoon he entertained another visitor from his regal position – a friend he hadn’t seen for a while who’d moved away. We’d done our best to let all those who had invested time in Sam and been close to him know what was happening and their visits and phone calls made those days really special. We had always hoped and prayed that when the end came he wouldn’t be reduced to a wheelchair and dependency as so many with brain tumours are – that it would be quick and painless. But this way was the best of all – long enough for family and friends to see/talk to him one last time, long enough for us all to adjust…

I was a lovely day – reminiscent of the Sunday a week before when we had all sat watching Lord of the Rings. The roller-coaster had made a few climbs and dives in between! Now it was approaching the end of the ride. That evening was an extraordinary precursor to the finale, as Martin came in to spend the evening with his son and I went home to bed.

Their relationship was never easy – the father working so many hours. He adored his little son, full of character and smiles, obsessed with ‘muke’ and later Star Trek, computers when they arrived. He would do anything for him – but despite that the resentments grew, as they always do in teenage years. “You are my father, not my doctor” – a line drawn at the start: so much pain for the impotent doctor. Yet the boy began to soften, open up, talk… and past issues were exposed and gradually cleared away: love triumphed! On this last evening he made room for his father on the bed and said he wanted to show him a movie…

The film was extraordinary: The Diving Bell and the Butterfly. It is about a man in his 40’s who has locked-in syndrome: he can’t move any part of his body except one eye, yet his mind is whole and well inside. He wrote the book by blinking his eye to communicate. He dies in the end with his father standing by. I haven’t had the courage to read or watch it yet, but Martin said he couldn’t believe he was lying beside his dying son watching a father crying over his dying son… I’ll tell you now what Sam said the following morning, when Martin asked him why he had picked that movie?

“I wanted to show you a film about a man who defied death”


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Saturday

On Friday evening Sam turned up on our doorstep in his coat – he’d just probably been to the cinema to actually see Hunger Games 2. We didn’t find out as he was only there to deliver a terse message: “I want that bed moved out of my sitting room!” The irritability was to the fore and we were definitely personae non grata! I soothed him with what I guessed would be a fair deal” “Let’s wait until Sunday, and if you still feel the same then of course we’ll move it”.

Perhaps it was a wild guess rather than a calculation – we only knew that he wouldn’t stay as well as this for long. We’d actually asked a young friend who’d received cancer treatment and steroids to talk to him about taking them, perhaps persuade him it would be wise…? But whatever she’d said it had made him even more determined not to… Oh well – at least he’d stop being so horrible to us soon! I had to go and relieve the night staff again on Saturday morning and didn’t know which Sam to expect!  But it was fine: he did actually quite like being looked after – on his own terms!

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But Saturday 22nd is memorable because of what Martin did.

For nearly 6 months Martin and I had been living in the rented flat in Leicester during the week so he could walk to work and coming back to the community house at the weekends. About once a month – or whenever we could arrange to all be around together – we would have a household meal: November 22nd had been in our diaries for a while and Martin had offered to cook.

He decided that morning to do his signature dish of roast lamb with garlic. I can’t remember what I was doing – probably laundry and checking up on Sam – but Martin spent most of the day preparing the feast 🙂 Sam was much on his mind, of course, and he felt the meal should be a celebration of his life. He placed 27 tea-lights around and above the table, one for every year of his life. The lamb was a reminder of the Passover meal – and we realised we needed to drink the wine…

On January 29th 2010 the first person who had come to visit us after hearing the diagnosis – Grade 3 asterocytoma, probably 3-4 years to live – had brought a bottle of wine intended for laying down – an expensive bottle that could be kept and would improve with time. It would last for some years – but Rich declared that Sam would last longer than the wine! It was a statement of faith and hope, lifting our eyes and spirits out of despair. We kept it on our mantlepiece – we’d kept it for 4+ years so far – as a constant silent declaration.

But we knew the time was rapidly approaching for us to let Sam go. To continue to pray for healing was both unrealistic and unkind: I actually asked the church NOT to pray for healing because there is no doubt that when we pray it has an effect, even when we don’t see a complete reversal it can relieve symptoms and prolong life: we have seen it before. But Sam was not going to recover from this: it would not be ‘faith’ to pretend he would – but he was still going to outlast the wine: we would drink it! We decided to use it in a household communion prayer before our meal and invited Rich to join us.

Just a small circle of friends, but such a precious few moments: thanksgiving to the One who went before, conquered death, showed us the way and opened heaven. We prayed for Sam and committed him into God’s hands – his body, his life and his spirit. We ate the bread and tasted the wine and knew the peace of heaven. It was so right. When there is nothing more to be done we fall back into God and the promises of life forevermore.  Surrender is faith.

The meal was poignant and wonderful. It was the high point of our fellowship as a community, as if this time was what this strange mixture of people – and the lovely baby – were together for. The support of these friends who lived in our house meant more than we can say. We kept some lamb and wine for Sam…

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The film buff, not content with Hunger Games, had gone out for the evening with Dean and a few other to see The Imitation Game. It was games all the way for Sam… He came into the room with Dean in a state of excitement, having been completely inspired by the life of Alan Turing. We don’t know how he managed to watch the film with only one eye and one half of his brain working, but he was exultant: “I am just like him!”

Happy Sam made his way home to meet his night watch-women, while contented and full-hearted the residents of Burton St made our way upstairs to bed.

 

 

 


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Sam back in charge

Soon after settling Sam in his “new” home I’d left him with Becca and some friends who turned up. The thing was, he couldn’t be left alone, even to sleep – we didn’t know what might happen. This probably didn’t make any sense to him, as he couldn’t remember the times when he’d lost consciousness in hospital… but I don’t remember him complaining and at 10pm when the night nurses (miraculously!) arrived he didn’t object. They sat in the kitchen at the back while he slept in the front room. They would have helped him onto the commode or cleaned him up if he needed it, but once he got home he was no longer incontinent and managed to walk and support himself the few steps to his downstairs loo. The commode was never needed!

img_2824At 7am on Thursday 20th November 2014: I went back into 8c to relieve the night staff. Here is mum to feed you, son… what can I get you? How are you? And he was well and happy, loving being home with his cats. He struggled into his old dressing gown and even let me take a photo…”Look everyone, I’m still standing!” I don’t remember if he actually ate anything and no idea how he felt…we were fast approaching the point where I was to ‘go away and let me look after myself, please’… though he did appreciate the help I could give fetching and carrying. He continued to completely ignore his left side and just work round it.

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It must have been that morning he told me he’d been on the phone to Dean and his healer had got 10 others together from around the world to “chop up his tumour and send it away”. I don’t know much about psychic healing so forgive me if I am sceptical. All I can say is it gave Sam hope – or is it that brand of ‘faith’ that is simply a mask for denial? We Christians see enough of that so I can hardly point the finger 😦

It must also have been that morning that he told me he didn’t want to take the steroids anymore… Oh boy. Sam was back in charge and he simply didn’t want any medical intervention! I tried to persuade him that it would be stupid to stop them suddenly and he should do it gradually and he agreed to take half the dose. Getting those last 2 pills down him that morning reminded me of his very last dose of temozolomide on the last day of radiotherapy at Easter 2010: he was doing it against his will and only to stop me nagging… 😦

We knew this would have a very negative effect as soon as they wore off. It was only the dexamethasone that had brought him back from the brink and he would soon find the symptoms returning. How long did we have? It might look as if he could go on and on – how did this happen after nearly dying yesterday?! – but it was Becca who had found a web page that said with young brain tumour sufferers they could be walking around and dead 2 days later. With other cancers the organs gradually shut down one after the other as it spreads through the body, so it is more gradual. But brain cancer doesn’t spread into the body: the blood brain/barrier both prevents this and stops conventional cancer treatments going the other way. So there is just the brain to shut down – and of course when that happens…

On the other hand, we were aware that one of the side-effects of steroids is irritability and mood changes. Sam’s grumpiness the previous night – and what was to follow over the next 48 hours until the dex was out of his system! oh dear! – could well have been due to that. Or not. The lad had a massive brain tumour – of course it was going to affect his personality… 😦

We were getting on quite well when a couple of nurses arrived at the door. They had come to assess his need for nursing care, bless them. Apparently 2 others had come the evening before and he had sent them away! And that is pretty much what he did with these 2 as well… “What do I need you for?” “Help with getting to the toilet and washing…?” “I can do all that myself!” He obviously didn’t remember anything from the hospital!  But this time I was there…

I say – rather forcefully, rather crossly – “OK, Sam. If you can do it yourself, get out of bed, go upstairs and take a shower!” He throws off the covers and pulls himself to his feet. He holds on to the bed and gets himself to the foot of the stairs. The 3 of us watch as he puts his weak left leg up a step at a time and uses both hands to  pull up the banisters… (well it must have been just the right as the left was useless). He reaches the top and we hear the water running… What a stunning display of stubborn willpower! I tell the nurses I will call them back when we need them…

That is not the only shock of the day. 20th November Sam is not the same as 19th or 18th or 17th November Sam: he is now master of his own destiny and means to prove it to us. As he finishes showering I call upstairs, Hey Sam, while you’re up there find some clothes and get yourself dressed! He does! He comes back down and sits on his bed – surely exhausted? He puts his head in his hands. I say, OK, well done. I think I’ll just leave you for a while then: I need to go back and check on Becca – she’s pretty tired after spending those nights with you on the ward.  I leave him alone.

Back on the top floor at Burton St I sit on Becca’s bed and tell her what’s been happening… (This is when she told me about the website information: don’t be taken in by it, mum.) I say, I’d better ring Sam and see how he is. He answers the phone – to answer at all is pretty unusual for him actually… “Hi Mum, I’m on the way to the cinema” !!!**&%$***!!! WHAT??

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The film he wanted to see wasn’t on until the next day, but he said he’d just wanted to prove he could do it. He did in fact return to see it on the Friday: it was one of the Hunger Games films. Must have been part 2. By Friday I’d given up keeping watch. Becca also commented that if he was going to do this sort of thing she was going back to Brighton – which she did on Thursday afternoon: “Call me when you need me Mum”. 

Our roller-coaster was flying along and we could barely hold on. I don’t remember which friends came round or what I did for the rest of the day, but he was obviously able to manage without us. Fortunately he was still willing to have the night nurses to keep watch while he slept, which meant we could.

One other thing happened: at about 9.30pm our lovely GP turned up on our doorstep. He’d just been to see Sam and spent 40 minutes trying to persuade him to continue the steroids – with no success. The 3 of us sat in wonder at the determination and sheer wilfulness of Samuel Dyer. He was right really, it was what had got him this far and why shouldn’t he continue this way? He believed in himself and the path he had chosen: he had faith…imgp5960

On Friday 21st November Martin and I had a day off. We visited Sam in the morning, but then each went out for lunch with our friends/mentors and tried to catch our breath. So tomorrow, Monday 21st, I will have a break from blogging and take up the story again on what was Saturday 22nd November, which this year is Tuesday. Thanks for reading! x


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Angry and frustrated

It’s a grey November Saturday afternoon and I have ‘gone upstairs’ to sit in front of my screen and make my daily journey back in time. I knew this would be challenging – unearthing buried memories and sadness – but I wasn’t prepared for feeling so terribly tired!  I’d forgotten that grief is a weight. We learned that in the weeks after Sam died and was buried, but I definitely didn’t feel like this at the time it was unfolding – probably because we didn’t know what was ahead. I suppose I was running on adrenaline then, driving from Leicester to Loughborough, organising everything for Sam’s homecoming, keeping people updated, getting his friends lined up to visit…  It left little time to reflect, it was as much as we could do to feed ourselves and fall into bed. It’s good that loss is a process and human beings are programmed to manage it in different phases over time, otherwise no-one would be able to cope.

2 years ago it was Wednesday 19th November. I think we must have given Martin the day off after his emotional time on the ward yesterday: I remember returning alone to the img_2779side-room Sam had been allocated to find my 2 childrenimg_2791 sharing the single bed. Becca was trying to cheer him up but he was very fed up! He had been kept awake most of the night by hiccups (another symptom of raised intra-cranial pressure). They were giving him something to help, but he hated taking tablets. ALL he wanted to do was go home! We had a long time to wait…

Of course there are blanks in my memory of those days. I don’t know how we got through the next 7 hours! All I remember is Sam’s anger and irritation, his desperation to be back in his own domain. He just had to wait – for his drugs to be dispensed to take home, for the ambulance to be ready… also, though he didn’t realise this, we had to be sure the hospital bed and commode had been delivered to his house. Our kind lodgers at no 7 round the corner had agreed to meet and let them in. A thing as small as having the bed made for us ready for his arrival was a source of immense gratitude.

While we’re all waiting for the ambulance, here is an excerpt of pure Sam from 2010, telling his own story when he had completed  chemo-radiotherapy and was in the initial stages of trying everything that was available on-line. He wrote the piece for a drummers’ forum and allowed me to post it on my original blog on 22nd September 2010: This is an edited version:

“What do you do when you’re diagnosed with terminal cancer? Story.

Simple question, really. This is going to be a raw and controversial post so bear with me.

Over 2 years ago, I dropped out of university due to depression, the zenith of which was being alone in my room for a week, not eating. That was about June 08. Eventually the symptoms retreated to a manageable, discomforting background noise, though I have the suspicion they’re still pulling my strings in subtle ways.

Then  I signed up for a home-study computing course that I could follow through on for the next 3 years. That went well until about March of last year, where I started noticing my right eye displacing. A tree in the distance in the sitting room was turning double vision. On April 1st 2009 I went in to get my eyes checked with the doctors, after an MRI they detected 2 large, unspecified lesions in my brain. One I’m told was up to 15 cm across. I spent the next 9 months in and out of hospital, not knowing what I had – I was told it was a rare brain inflammation called ADEM –  until a shunt (tube to relieve pressure from my head into my stomach) and biopsy (needle in the brain) operation was done on January 21st.

January 29th this year I get told I have an astrocytoma, a grade 3 brain cancer. There’s nothing they can do. Surgery is impossible; the tumour lies deep in my right hemisphere, by the motor cortex. Removing it would leave me ‘very disabled’. I was given a diagnosis of ‘a matter of years’

I had to be taken out of that room in a wheelchair.

So, for the past few months I’ve been at my parents’. I have not taken this news like a coward, I have decided to mercilessly fight this illness until it’s gone. It’s a horrible situation. I’m mostly alone in my room, broke with no job experience, which is my own fault and no sympathy please. But I have to find a way forward. I paraphrase, but that life is worth living is the most obvious of suggestions, otherwise the most inescapable of conclusions…” 

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Sam in late 2010

“…Immediately after diagnosis, I researched, and researched, and researched. It turns out there were answers. There are many treatments for cancer, verging on an outright cure, and they are emerging on the edge of underground consciousness. 

I filed my choices down to several. A clinic in Spain that deals with treating cancer with a combination of flax seed oil and cottage cheese. I’ll let you all finish laughing before explaining with my limited knowledge: cancer cells have weak voltage and the electrical charge in the flax oil fatty acids overloads them so they revert to normal and die naturally. There are many testimonials of the efficacy of this method, and this clinic claim around a 94% success rate…which I simply find hard to believe, so I can imagine YOUR level of incredulity. There’s also DCA, MMS, Oleander, collidal silver, and much more for people to look into. 

Most promising of all, is when I spent the summer of ’09 in Budapest with a friend, and showed them a video about the use of hemp oil on cancer cells.  This was what truly excited me. Here was video proof of skin cancer being flat out cured in a week, which is a truly audacious, exciting claim. I immediately found a supplier…

You’re not going to find something like cannabis oil or flaxseed oil, or DCA, under any national health program – I would strongly recommend you to take care of yourself better, diet, exercise, checkups. Prevention is better than cure, and there is most certainly such a thing as an ‘anti-cancer’ diet.

I’m listening to Ulver’s Shadows Of the Sun, an utter masterpiece I first heard on the day that KeithK died. I hope this information benefits someone, anyone….as for my own emotional and spiritual health, I have been given a pink slip from humanity, I no longer care about drama, politics, empty news calories, religious affiliation, mental blocks, bad food, social Darwinism, any of that. The massive stupidity of a lot of human behaviour is rather blinding to me. Beauty and personal evolution to my own ends are all I have left, and, that’s OK!

There is a chance I could recover, indeed. But I’m not sure what my life would be like if I did. Good days are totally pain free with minimal symptoms (only mild shaking in my hands). Bad days involve being put in an emotional boxing match with my shadow self until it punches all my teeth out and leaves me for dead on the pavement (and then I get up again… 🙂 )

I know three things, whether I survive this or not: I’m on my own, it’s going to get harder, and love is REALLY the only thing that matters.  Thanks for reading.”

That was our son. He tried most of these alternative ‘medicines’ over the next 4 years along with various types of spiritual healing. He had his own ideas that kept him positive – even if they were deeply flawed. It was no good arguing with him – he knew what he wanted to do. But as the post says, he also lived with the possibility of failure and death every day 😦 I suppose the events I’ve been remembering and ending up in hospital nearly dying were all good reasons for anyone to be upset and Sam had more right than most to be resentful about the hand life had dealt him. Of course he was going to have to express that…

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Goodbye cruel ward…

At 4pm the ambulance paramedic arrived on the ward with her trolley. Perhaps Becca went in it with him – I don’t remember. All I know is that I drove back to Loughborough as quickly as possible to beat them and be there in time to let them into the house! He was too weak to walk, so we wheeled the commode out so he could ride it to the door. He stumbled to the bed in the middle of his front room, lay down and surveyed what I had done…

“Please give me the phone, I want to ring Dean” “Hi, Dean, I’m calling you from my new house. It’s like my old house, but it’s all changed…  I was in trouble.

 


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On the ward

It was a gruelling night.  Sam needed nursing care – he was incontinent, unable to get out of bed alone, not fully ‘with us’. At some point he was wheeled off for his scan. At 2am Martin’s brother and father arrived: they had collected Becca at a train station en route She’d been having a ‘2 months together’ celebration with her boyfriend, Tom – which was why she’d wanted to go home. In need of support, she invited him to come along too. Brave man – he’d never met any of us before! But he was willing to come into this traumatic situation to support her, as he continued to do in the following months. We are eternally grateful.

In the early hours of Tuesday 18th November there was a moving family reunion in the dimly-lit corner of the 6-bedded ward as we all tried to keep our voices down around his bed: Sam and his fellow patients were asleep. Martin and I were exhausted and very glad the cavalry had arrived. We were able to take Martin’s dad back to our flat – only 10 minutes walk away – and all go to bed, while Richard, Becca and Tom took over at the bedside…

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Obviously there had also been some medical intervention since Sam’s admission – drugs for pain and sickness and also the first-line treatment for raised intra-cranial pressure, the steroid Dexamethazone. This drug reduces the inflammation and consequently the pressure and its symptoms and it undoubtedly helped cause the improvement that followed. By morning Sam was back to his almost-normal conscious self. We returned to the ward at around 7am and found Tom and Becca sleeping on chairs in the dayroom and sent them to our flat for a proper rest. Richard was by Sam’s bed and soon decided that as the crisis was past he and Dad would drive home. Later on, Becca put Tom on a train back to Brighton… and then there were 3.

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imagine the goose as the consultant – having a good telling off!

During the morning there was a ward round. A young consultant came to talk to Sam about what they had found and what they could offer. Oh boy – that poor doctor, having no knowledge of our son’s history and approach, got the full force of Samuel! “The CT scan shows the tumour has grown and there is mid-line shift (ie it was pushing into the left side of his brain). We could get an MRI with more detail and send you to the surgeons in Nottingham to see if they can do anything. We could give you some chemotherapy…?” “I have dealt with this in my own way up until now and nothing has changed. I don’t want you to do anything, I want to go home and continue to do it my way!”  With words to that effect Sam effectively dismissed the medics and took back control of what was happening to him – at least as much as he physically could.

The previous evening we had texted a number of our friends and Sam’s friends to let them know about him, so soon after that Dean, Sam’s energy-healer friend, came to visit. I’m sure this meant a lot to Sam – he was very reliant on Dean’s advice. We were also delighted when his old school-friend James came in. It was in fact the beginning of a number of reconnections with people who’d known him in recent years which was so important and helpful over the coming days. And of course his img_2783sister had long hoped for this opportunity to support her brother when he needed it…

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The day now stretched ahead and there was a lot to organise. Martin took over, making contact with the acute oncology team who could make the arrangements for Sam to be cared for at home – including night nurses, a hospital bed and other nursing care in due course. I drove back to Loughborough to get his house ready…
img_1203I worked hard cleaning and moving furniture around, putting the sofa in the kitchen so that there would be room for the hospital bed when it was delivered. I tried to position his personal things where he could get at them – music and a bedside table, chairs for visitors. I tried not to think that I was preparing a place for him to die in peace: we had no idea what that would entail or how long it would take…  But this is the status I posted at the end of the day – facebook found it for me this morning, 2 years on. Look at that, 140 comments… so much support from dear friends and barely known acquaintances. It meant so much. We knew we were surrounded by many prayers and felt the grace carrying us. Later on it was astonishing to be thanked for allowing others to walk the journey with us by being so open and sharing it as it unfolded. It continues to be a privilege and even helps to somehow give it all meaning. Thank you for reading now…

Meanwhile Martin sat with Sam. Martin still remembers with immense gratitude one of his consultant colleagues coming onto the ward to bring him coffee, mints and encouragement. He witnessed Sam try to walk to the toilet and fall. The hardest thing for him as a doctor was being unable to do anything to help, to make him better – because no-one could do anything. He recalls lying on the bed with him, crying over our son, his tears falling on Sam’s face – and Sam looking at him and saying, “Why are you crying Dad? You haven’t seen what I’ve seen…” We don’t really know what he meant or what he thought was going to happen: he continued to insist the tumour was irrelevant, but it seemed that at the same time he knew he was dying and was completely unafraid.

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He was moved into a side-room for his second night in hospital, which gave a bit more space and privacy. It also declared that he was no longer an emergency to be watched over – clearly the steroids and other drugs were having an effect. Becca took over the nightshift and laid out her own bed on the floor next to him and we returned to our nearby flat – so grateful for our Leicester home ‘for such a time as this’! – to rest and wait for what tomorrow would bring…