Gone upstairs

a personal journey through grief and change

Emergency brain scan, please

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Monday morning 17th November 2014. Believe it or not I was still hoping I would be able to get away to the 3 day retreat I’d booked at Launde Abbey… that’s how convinced we were that Sam had stabilised. Martin had already gone to work and Becca was getting ready to return to Brighton as planned.

It seems crazy with hindsight, but perhaps because we had lived with this situation for so long and certainly because Sam was so sure he was well and could manage we had developed the habit of preserving normality, conserving emotional energy and giving ourselves the space we needed. So there I was, back in Burton St – a mere 100 yards from Sam’s house – refusing to worry, relaxing and playing with our lodgers’ delightful  baby girl 🙂 What a gift she was during that stressful season! I could switch off and pretend to be a granny – perhaps a reminder of simpler days. Sam would ring if he needed anything – he always did.

On the way to the station Becca and I popped in so she could say goodbye to her brother. He seemed alright, but didn’t want any breakfast – feeling a bit sick. Thinking about it now I have no idea whether he’d been upstairs to bed or just stayed on the sofa all night… I wasn’t allowed to interfere with his lifestyle and it was so painful to be rebuked I had learned to bite my tongue. Anyway, I had to get Becca to her train so I promised to return as soon as possible to check on him.

We fitted in a quick visit to the flat/house in Leicester she had come north to see and I put her on the train there. On my way back to Loughborough I had a call from Sam: he’d been sick.

I trained and worked as a nurse when I left school – I’d even run a ward with neurology patients for a few months: I knew the symptoms of raised intra-cranial pressure. Sam hadn’t suffered with it in the way most brain tumour patients do, because he had had a drainage shunt inserted back in 2010 when his biopsy was done. It’s what they use for children with hydrocephalus – ‘water on the brain.’ This had undoubtedly helped to keep him relatively symptom-free. But now, as the tumour seemed to have grown or bled, the space inside his head was getting smaller. Raised pressure classically causes headaches and sickness. He wasn’t admitting it to us, but we found out later from one of his internet friends that he’d had headaches most days for some time. That was why he was spending so much time quietly meditating and smoking cannabis as medication, to reduce the pain.

It was at this point I knew normal life was over and rang to cancel my retreat. And I knew I’d have to call the GP to get medical help and drugs for the pain and sickness. Nurse photoWoodward swung into action…

I see myself entering his little house with my key. My son is pale and screwing up his eyes because of the headache. I manage to get 2 paracetamol down him with a little water and wipe up the clear vomit from the parquet floor next to his chair. He’s in the dressing gown he always wears, covered in a blanket, doing nothing. There is probably a cat present somewhere in the room or on the stairs: they are his cuddly companions, making living alone in that little house bearable. Even if he hasn’t fed himself he will have fed them… “Sam I’m going to ring the doctor”.  “Grunt”.

I have this auto-pilot thing where I just switch off emotions and do what needs doing. This must be how I coped, by not thinking, by ringing the surgery and asking for an urgent call-back, by automatically cleaning the kitchen and tidying the cushions. I don’t remember what I did for those hours of waiting or how I got through them. I do remember the locum on the phone surprising me by not coming out but saying he would arrange an urgent scan – also saying there were no notes from the home visit I’d arranged the previous week (grrrr). I must have told him we wanted to go to Leicester rather than Nottingham where Sam had had his radiotherapy because we’d decided over the weekend it would be better to be where Martin works and we feel more at home instead of trying to avoid uncomfortable clashes with colleagues as we did in 2010. Nottingham just felt all wrong this time: we had too many horrible memories from past experiences there: Leicester turned out to be perfect.

Meanwhile, Sam on the sofa, letting me take over.  Undoubtedly feeling awful… At some point I said he must get dressed as I was going to drive him to hospital for a scan. I can’t remember how he reacted except that he said he wasn’t going anywhere without some ‘medicine’.  He had to phone Ash and get him to bring some weed over to the house. I updated Martin, who was ready to meet us when we arrived at the LRI…

It is horrible to be caught between worlds. This had been our experience since the end of 2010imgp2713 when, having finished radiotherapy, Sam started seeking out every alternative means of physical and spiritual ‘treatment’ he could get his hands on. We’d had no choice by to let him do so: he was a adult and there was no other conventional treatment available. Many old blog posts detail the tearing and letting go we had to go through time after time as he made choices we could not agree with. The difference of approach was the subject the Mail and One Show were most interested in. By now the use of heavy duty cannabis resin to supposedly kill cancer cells had stopped but he’d got into the habit of smoking instead: for analgesic rather than recreational reasons perhaps, though one of his favourite sayings, now on the plaque on his grave, was “So high right now!”

I must have gone home and come back, at some point got the car ready. It was dark by the time Ash came and I was longing to get Sam moved. As it was we got stuck in the traffic on the Leicester inner ring-road. Sam lay down on the back seat all the way. To encourage and comfort him as we waited at lights, I turned round and said how proud I was of him, he’d done really well and overcome so many personal issues – forgiven people and dealt with his ‘stuff’. I meant it too: not many 27 year olds are forced to do inner work, but Sam believed his negative emotions had contributed to his illness and he was definitely on a spiritual quest… So I said “you are really whole on the inside now, son. The only thing you still have to learn is surrender!” He replied that his friend Nic in Louisiana had said the same thing – and that I had been his first and best spiritual guide.

What a sweet conversation at such a moment. I am back in that car now, close to my wonderful son… It was right about this time (5.30pm) 2 years ago today. And an old version of The Lord is my Shepherd came into my head and (somehow) I sang it.

img_2776

The Lord is my Shepherd I shall not want, He makes me lie down in green pastures, He leads me beside the still waters – He restoreth my soul and guides my path in righteousness for His Name’s sake.

Though I walk through the valley of the shadow of death, I will not fear Thou art with me. Thy rod and thy staff they comfort me – Thou preparest a table before me in the presence of my enemies

Surely goodness and lovingkindness shall follow me all the days of my life. And I will dwell in the house of the Lord – forever and ever and ever.  The Lord is my Shepherd I shall not want.

Psalm 23 (King James version) by Keith Green.

“Mum, that was beautiful” Some of the best words I have ever heard.

Soon after and with great difficulty I found a place in the hospital car-park and Martin met us with a wheelchair that he’d miraculously found by the main door. Together we pushed Sam and carried his things up to Ward 16, medical emergency admissions, and got him into bed. Martin had already been talking to the doctors and chasing up the scan, which would be done “soon”. Almost immediately he wasn’t at all well – started to have small fits and go unconscious. We thought he might actually die that night and Martin phoned his family to come up from Sussex.  Rebecca had only been home for 4 hours.

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Author: Sally Ann

True-story teller - words and pictures

4 thoughts on “Emergency brain scan, please

  1. Reblogged this on Sally Ann Dyer's blog and commented:

    I am blogging on Gone Upstairs about the 10 day journey leading up to Sam’s death on 25th November 2014. You can find the first 3 posts over there: this is the 4th.

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    • Hello, I am very sorry for your loss. Many of us were following Sam’s journey and were praying for the best outcome. Question: If the oral consumption of 1 to 2 grams of cannabis resin had previously reduced the tumor, and he had already survived many years following this regimen, why did he abandon this approach? Why did he discontinue the aggressive use when tumor re-growth is to be expected? I noticed in your blog “By now the use of heavy duty cannabis resin… had stopped but he’d got into the habit of smoking instead…” Do you mind if ask you why he discontinued his anti-cancer therapy with cannabis? Thank you kindly for your open discussion on Sam’s journey. My deepest felt sorrow and prayers go out to Sam and his family. May God Bless Sam and his family.

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      • Hello Steingrimur – I see you are a doctor. What is your speciality?
        Well this is not an easy question for me to answer because I am not sure what Sam himself would say. Over the last 2 years of his life he became convinced that the tumour had become inactive – that he’d “beaten it” This was a lot to do with his reliance on an ‘energy healer’ and belief in what this man said and Sam’s faith (denial?) led him to live as if he was cancer-free. He refused any brain scans for all this time. When he passed the 5 year mark from 1st April 2009 when it was first seen (but not diagnosed/treated until Feb 2010 of course) he took the fact that in many other cancers people are pronounced cured at that point and it was a cause for celebration…

        So that is one reason – not thinking he needed any more cannabis resin. But also he couldn’t afford to source it. as after the initial trial (with very mixed packets of stuff, no dosage, who knows what was mixed in there, that were sent from Amsterdam) he was clean out of funds. In 2011 he was invited to Canada for a 3 month course he never paid for by a contact through the newspaper article in The Mail on Sunday – link in the paragraph you quoted. This was homemade stuff, cleaner and stronger than the initial lot, made by a man who was treating his own daughter’s tumour. He is an avid protagonist for the use of cannabis – even though his daughter eventually died as well despite being give cannabis resin consistently and right to the end by her dad. I suppose we should also bear in mind that medical cannabis use is legal in Canada and not in the UK, therefore not readily available in this country! I heard there was a trip to a supplier in Wales once – a friend drove him and Sam took a dose and fitted in the car on the way home – hardly ideal ‘medicine’ to be taking. What do you call alternative medicine that works? Medicine! It is so sad when people refuse conventional treatments and use stuff that they are told is better. Steve Jobs would be alive today if he had gone the medical route! But Sam had no other options…. he needed hope.

        By the way, please don’t believe the spin they put on his father opposing him in the Mail article! That simply wasn’t true: we both supported him as much as possible while knowing he’d had all the conventional treatment that could be given. It was very difficult for Martin but throughout he has never believed that cannabis is a miracle cure and is angry that vulnerable people are taken in and have to pay money for false hope. A much better representation of the father/son dynamic is portrayed in the BBC film made for the One Show – again the link is above.

        So it was a problem. Although we/Sam’s father didn’t try to influence him the scientific scepticism was there and Sam did realise we had a point. Nothing had ever been proved by clinical trial, it was all anecdotal – and people with cancer and a terminal diagnosis will grasp at any straws. It was never actually proved that it was the resin that had shrunk the tumour in the early days. It could have been the radiotherapy having late effects or the Christian healer who prayed for him and started his spiritual healing quest in another direction. Or any one of the other dietary and supplemental things he tried from Budwig to DCA.

        So basically he lost the drive and the will to pursue the medical cannabis route. He was a young man fighting an impossible battle, every morning waking up knowing he had a death sentence – and we think he always knew that underneath whatever twisted ways he found of getting around it. He didn’t share his dark times with us: he didn’t want me worrying and was always anxious about what would happen to me should he die. He insisted it was his fight, not ours. He covered up how ill he was at the end and only told his sister when she visited, which brought it to light…He coped with his stress and headaches by smoking.

        Perhaps if he’d been willing to have scans and taken more resin when the tumour started actively growing it would have helped. Apparently it works best when the cells are dividing rapidly. Sam’s tumour was so slow growing it didn’t have much chance to work even if it was going to! When he was diagnosed no-one – even the second opinion at Queen’s Square – could believe it really was cancer because it was so big and he had no real symptoms. It must have taken over his brain gradually for years before it was found.

        Anyway, it is what it is. Thank you for your kind words and thank you for getting me to write about it again at this particular time… It is therapeutic and good to remember such a brave man. I am more than proud of my son. If he made some crazy decisions or non-decisions what can I say? He had no right brain!
        Sally Ann X

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  2. Sally Ann

    I don’t know how you are doing this, save that, while so painful it must also bring relief….

    It is, however, incredibly powerful.

    Xxx

    >

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