Gone upstairs

a personal journey through grief and change


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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…