Gone upstairs

a personal journey through grief and change


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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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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…


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Catching our breath

This process is challenging. Writing every day is immersive – I do feel as if I am back there 2 years ago, or at least watching developments from the corner of the room… It’s Sunday morning now, 16th November. I can’t remember but I am guessing Becca spent the night at Sam’s house. It’s time for me to make bacon butties and work out where we got to with LOTR…

Tolkien’s tale of middle earth was embedded in our children at an early age. Theseimage-1 photographs were taken in Chicago in 1995 when Sam was 8 and Martin had almost reached the end of the third book. They were keen to have the next instalment at every meal to find out what happens at the end. Martin did a sterling job, putting on voices for all the characters. He had a particularly ridiculous camp one for Gandalf which made them both giggle (“Do Gandalf, Daddy!” “Oooh hello! I’m Gannnndalf”) You can see Sam is nearly asleep over his Chicago pizza but the book is ready on the breakfast table the next morning…! We finished it one sunny morning drinking coffee on a restaurant pavement in the shadow of the John Hancock building 🙂

These are the things that make memories. Hunting for these half-remembered photographs brought back many more. There is comfort in it – reminders of happy times, reminders of Sam and our family life back then. Nothing can take these things away – they are our treasures. I am glad I took so many photographs! I said before, these years would have been swallowed up by time whatever happened later on: we have already had to learn to die to the past in order to move forward and grow.

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Sam in around 2006

So – we are all Lord of the Rings fans. We eagerly awaited Peter Jackson’s films and each year made a family visit to see them as soon as they were released. They were not quite true to the book, but close enough for us – we loved them. We bought the extended DVD’s and Sam frequently watched them again. Later on he even travelled down to Brighton to visit Becca so they could go to an all night screening of all 3 films! She fell asleep I believe… It was the obvious thing to do together – watch the trilogy for what turned out to be Sam’s last time. “There’s some good in the world, master Frodo, and it’s worth fighting for” “One thing’s for sure Frodo couldn’t do it without his Sam” “We can only do our best with the time that’s left to us” “the smallest person can make a difference” “We may not defeat them, but we will meet them in battle nonetheless!” “No man should have to see his son die” “How do you pick up the threads of an old life?” Deep echoes of truth that help us all on life’s journey.

Our Sam – he was Samuel, but I wish I’d had the courage to name him Samwise! – loved these ideas and had plenty of others of his own. He was a thinker, an amateur philosopher. He knew himself well by this stage, had talked through his childhood issues with me, addressed poisonous relationships from his student days, knew his strengths and weaknesses.

He was also a wizard with words: we always tried to get him to write and when he did it was stunning. He could argue the hind-legs off a donkey; he could turn something round and send it straight back at you. He posted crazy videos of his opinions and thoughts on You Tube, most of which we find embarrassing, but apparently he had a following. (If you are inclined you can look up Scratch 47) He had his own spiritual approach to life. He felt entirely misunderstood by everyone else and regularly ranted about it to his facebook friends!

Here is a sample of Sam, culled from his page by his fb friend Duggy Dyer.(Being so clever you’d think he knew Duggy was really me, but he chose to ignore that… “Duggy please tell Mum” “Mum says…”) Anyone who was fb friends with Sam in 2012 will recognise it…

“I’m a 25 year old hermit introvert with an 155 IQ who is surviving terminal brain cancer 3 years going now with doses of hands on spiritual healing and massive doses of illegal cannabis resin, who went on national TV twice to out himself to help other people despite being sick of society, and by the way despite being functionally atheist I was touched by an inexplicable healing heat (yes, you can say it, God) during a Christian evangelist meeting and am wrestling with my purpose/goals/health/social life/finances, so please don’t think I’m an egomaniac, know-it-all, depressive, or angry misanthrope, because I really like individuals and even despite all of that don’t want to make you awkward because the only way out of all of this is the communication, warmth, and understanding that I will never ever admit I secretly crave…

 “…my mind and freedom to choose is the only thing I have left and I’ll never surrender that no matter who decides to be condescending or mouthy, because if I do, I am the victim they say I am. So you’re stuck with me, my scatterbrain, my motormouth, my broken heart, my social anxiety, my death sentence”

 

This extraordinary and clever young man (155 IQ) was our son. We were the ones stuck with his ‘scatterbrain, motormouth, broken heart, social anxiety and death sentence’ – though he never burdened us with them… apart from maybe the motormouth! It’s good to remember him and to recognise what he was up against, day after day, inside that head of his.

During that precious weekend, if there had been any doubt in our minds, it became obvious how badly things were deteriorating in his incredible and flawed brain. The boy who had memorised all 176 episodes of Star Trek TNG and their directors when he was 10 or 11 couldn’t remember his computer password. He couldn’t get on-line… This really was a major blow, but he was so happy to have us around he didn’t make a deal of it. I wonder what he thought was happening…

That evening he thanked us. He said how much he’d enjoyed hanging out with us all, how much he appreciated it. It’s true, it wasn’t a common occurrence. Becca lives in Brighton, Sam himself usually didn’t want it. The 4 of us struggled to find something in common once the Lord of the Rings years finished. Christmas Day was our family highpoint, sometimes birthdays and less often a film we all went to see – when Sam had usually already seen it illegally pre-release on-line!

Our time together had been so restorative that at the end of Sunday 16th I posted this on facebook. “Sam was really unwell yesterday and we were preparing for the worst, but he’s made an amazing recovery and seems almost back to normal this evening… Lots of good family time was had by all and though the rest of us are pretty tired going into the week, all is well…”

For now.


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Seven year itch

It was seven years ago today, 1st April 2009, that my 22 year-old son called to me down the stairs, “Mum, I can’t see” and a little voice in my head said oh so clearly, “From today your life is going to change”.

Never a truer word, as they say. First the GP surgery, then the Eye Emergency Dept. Right now as I write I can go back in my mind to where 7 years ago we were waiting in a row on the uncomfortable seats in the MRI unit, Sam’s head in his hands, trepidation in our hearts, knowing with all our medical education that raised intra-cranial pressure could only mean a space-occupying lesion in the brain… yet hanging on to hope against hope all the same. Waiting. Holding ourselves together and waiting for time to pass and things to be done and people to say things to us.

The scan showed large lesions – white patches in his right brain. He had no symptoms apart from the headache and double vision: absolutely everyone said “this cannot be a brain tumour!” It was unmissable, yet atypical… The ophthalmology consultant called the neurologist, they agreed that perhaps it was ADEM – a curable inflammatory condition similar in behaviour to Multiple Sclerosis. That was the ?diagnosis.

Sam was admitted to the emergency ward, given a lumbar puncture to measure and relieve the pressure, and steroids. I can still see him sitting on the bed beforehand trying to absorb the news – pale-faced, unbelieving, as we all were. It is not what 22 year old young men expect to happen to them. It was hell for his father – especially after he looked at the scan. I suppose I went numb – I always do.

So yeah – that was the start of a whole new life. Not all at once… he was treated, sent home, given regular appointments to have his visual fields checked. The high pressure in his head from the extra mass was the problem, damaging the optic nerves – especially on the right side. The lumbar puncture released that pressure for a while – until it built up again. He got into the habit, when the headaches got too bad, of asking for another needle to be inserted in his spine – he had about 3 during that year, I think – but that couldn’t go on: it was too dangerous. Sudden release of pressure from a swelled brain can pull it down sharply into the upper spine and cause death by ‘coning’. There came a time when it was no – “we have to investigate further, we have to do a biopsy”.

But we had 10 months thinking this was curable. A second opinion at Queen’s Square even backed up the ADEM theory! So we kept on living, going away on holidays – 2009 was a great year for holidays that we would never have taken if we’d known what was really going on… Funny how it all works out and how looking back you can trace a journey you never ever imagined was possible to walk. There was grace. Every day.

It’s a long story – perhaps the defining story of our lives. At this point I am considering making it into a book. That is my nod to the 7 years and this post may end up being the introduction to an anthology of blog posts, poems, reflections and photographs such a volume would contain. Sam deserves it and it may help me grieve. I am in the process of deciding whether now is the time to commit to that…

When a journey is shared it gives it meaning – and we all need a narrative to live by. I would like to think the lessons we learned can be given to others who, I hope, will never have to go through such times – and perhaps be an encouragement to those who are walking a similar path to our (so far) 7 year one.

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We all need to learn how to both accept our mortality and stare down death.  We all need to live one precious day at a time, fully aware of the gift of just being alive: I like to believe we have embraced that call, but the truth is I still need reminding. Sam’s story can teach us all how to be fully human – loved and at peace despite suffering and loss.