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.