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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

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Historically just 1% of the national spend on cancer research 
has been allocated to this devastating disease.

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Together we will find a cure for brain tumours.

Plymouth University Brain Tumour Research Team

Gordon Shaw

Gordon was diagnosed with a brain tumour at the age of 32, after first being told he had probably a stroke and then possibly he was HIV positive. He started writing comics to help his friends and family understand cancer and as something cathartic for himself, but is now publishing them, as well as exhibiting the comics to a wider audience. He feels happy and settled, but his seizures are a constant reminder that his life is very uncertain.

“Having a brain tumour has changed the way I live my life. When I am in my happy head, I often think I might not see too many more of these times, so I try to recognise good moments when I am in them and thank people who are there sharing them with me. Compared with so many people I feel very lucky that I got away with it so lightly. I have had no long-term effects from my treatment apart from hair loss, but I have my beard as compensation for that!”


Gordon tells his story…

In the autumn of 2012, I was 32 and living in London, still smoking and enjoying a drink. I was working in hospitality but hoping to find my way into a more creative industry and my friend Timba was planning to launch his own studio and asked me to get involved. Then Timba was stabbed on a London bus and obviously our plans had to be put on hold.

As Timba recovered, we became really strong friends; we shared common interests, including good food and watching films.

It was at Timba’s house that I had my first seizure while we were having dinner. It took him a while to realise I wasn’t OK as I couldn’t explain what was happening. Just a few minutes later I had another seizure which lasted longer. Timba phoned for an ambulance and I was taken to A&E at the Homerton Hospital in Hackney, where I had yet another seizure.

It was quite alarming when I became aware that I couldn’t remember the pin number to unlock my phone. And even more frightening when I realised I had also forgotten my niece’s birthday and couldn’t recall her name or her elder sister’s name either. Added to this, I couldn’t speak so I was provided with pen and paper and encouraged to write. This too proved to be rather complicated.

I had a CAT scan and was told that I might have had a stroke. At 1am I was transferred to the Royal London Hospital in Whitechapel and at around 8am I was transferred onto a ward where I saw a consultant who, having decided it wasn’t a stroke, with absolutely no regard for bedside manner, posed the theory that I might be HIV positive. Later I was transferred to neurology; by this time, I think they suspected I had a brain tumour.

I tried to phone my dad who lived in Ayrshire, but had another big seizure and a friend had to take the phone. For some reason Dad knew straight away it was cancer. Mum had died of breast cancer when I was 15 years old which had spread to the brain. Tragically, she had been unable to remember my name or that of my brother Craig.

Five days later, I had an MRI scan which confirmed the diagnosis. The neurologist was pretty sure it was a grade 2 tumour, but one which was inoperable and incurable. He told me he couldn’t give me a prognosis, but it could be 10 to 15 years. It was earth-shattering and left me feeling very depressed, often incapable of getting out of bed.

At the end of the year, I had another scan which indicated there might be signs of growth. A further scan a couple of months later confirmed the tumour was growing and I was told it was now grade 3, bringing my life expectancy down further. To confirm this, I underwent a biopsy, followed by six weeks of radiotherapy concurrent with six doses of chemotherapy. It was great to have my friends Linda or Timba on hand to get the bus with me to all my appointments. They would help me remember questions to ask, as well as the answers the surgeons gave.

I had thought I would remain living in London, but my brother encouraged me to move back to Scotland. I decided to go and live in Leith on the East Coast, having been at Arts School in Edinburgh, which was also where two of my best friends lived.

I feel safe and happy and very settled in Leith. I have had some of the happiest moments of my life in the last six years and don’t feel I have moved backwards. It’s the longest I have ever lived anywhere, except for in the family home.

It took a long time to find out what the results of my radiotherapy and chemo treatment were because of a huge difficulty in getting my records transferred from England to Scotland. After three long months, the results came through that the tumour hadn’t really shrunk much.

Although I continue to have seizures, I don’t always have them every day and, thankfully, not anywhere near as bad as 11 in one day.

Having a brain tumour has changed the way I live my life. When I am in my happy head, I often think I might not see too many more of these times, so I try to recognise good moments when I am in them and thank people who are there sharing them with me.

Compared with so many people I feel very lucky that I got away with it so lightly. I have had no long-term effects from my treatment, apart from hair loss, but I have my beard as compensation for that!

Planning events in the future with friends, however, is hard because I don’t know whether I will still be here. I have also suffered badly at times with anxiety to the extent that I can’t even get out of bed and even if I in my head I tell myself not to waste valuable time and to get up and have a shower, just doing it seems impossible.

I am creating a series of comic books which came about after being given a book ages ago by Joe Sacco called Palestine which first led me to start reading graphic novels. Later I was reading another of his books, Safe Area Gorazde, when my boyfriend at the time suggested I could use the same technique of using graphics to “investigate” what was going on with my tumour, which I call Rick (derived from the word turmeric). It let me to asking family and friends for their thoughts on cancer – it could be about my cancer or other people’s with the idea of generating a greater understanding of cancer. Some people sent me poems, including one of my friends who even wrote me an Ode to Rick.

The comics, which can get ideas across much better than simple prose, also help explain what life is like living with cancer – which will more than likely be the thing which takes my life. They address things like side-effects, multi-disciplinary teams and making decisions on the way forward. They are self-published and I have a local printer who has recently taken an interest. I am organising exhibitions and approaching health charities.

Dad died six months ago which was tough, but I feel my life is moving on and I feel settled and in a good working routine. I haven’t had a day off work since July, apart from a couple of days to clear Dad’s house, and am working hard to get my fourth comic book finished in time for a conference at the end of November.

Writing the comics, which started out for me as something cathartic, has led to a much happier life. And then I have another seizure and I am reminded not to get too happy!

Gordon Shaw
November 2018

 

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease and we are proud to be changing this.

Brain Tumour Research is determined to change this.

If you have been inspired by Gordon’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy

Together we will find a cure.

The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.

Gordon Shaw

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