At 20 I was told I had a brain tumour. A clinical trial changed everything

Telegraph

2 days ago

Of all the things I thought might happen when I went off to university, being diagnosed with a life-threatening illness wasn't one of them. You don't consider the prospect of getting seriously ill when you're a healthy man in your early 20s. It's something that happens to other people, ones that you'll never meet, who surely aren't much like you at all.
But there I was in the doctor's office in 2019, aged 20, being told that I had a brain tumour. To be precise, it was a grade one pilocytic astrocytoma, a slow-growing lump the size of a walnut where my head meets my spine. I'd never heard of it before, despite the fact that young adults like me are more likely to get a tumour of this sort than any other.
Just the sound of it, the long, complicated medical term that made everything 10 times scarier, was more serious than anything I was equipped to deal with at that age. When the news came, my mum stared at me, clearly in shock and looking for anything to say that would make it better. My dad burst into tears. I had never seen him sob like that before.
I coped with humour. 'Well, isn't that a shocker?' I said to the doctor. I took a photo that I thought was funny and sent it to all of my friends, with the caption: 'Guess who has a brain tumour'. It was only when I got home the following night that the bad news sunk in. Alone in my room, with no one to put on a brave face for, I cried and cried for hours, thinking that my life was completely over. I took another photo, knowing that it would be my lowest moment. I didn't show that to anyone.
I'd always been fit and healthy. I was into skiing and snowboarding, but what I really loved was football. I was well-liked at university, making a huge group of friends that I'd play friendlies and go on nights out with. But then I started to get this strange 'fuzzy' feeling, first in my arm and then in my lower body. It took more effort to kick a ball about, as if my leg had become too heavy to lift. I studied product design at Nottingham Trent, so I was working with my hands most of the time, and a few weeks after that, I found that I was struggling to move my fingers, too.
At the time I was training for a marathon with some of my sporty friends, doing long runs multiple times a week, so I put it all down to fatigue. Then one day, as I was working, my hands started to shake uncontrollably. I phoned my mum straight away, and that's when she told me that I should go to the doctor, just to check that everything was fine. At my initial appointment I was actually told that I 'definitely have multiple sclerosis'. I went to my brother's birthday party straight afterwards, and my mum said that that couldn't be right, and that I should get a scan to see what the problem really was. It was a relief: she's always right when it comes to health issues, and most people who have MS aren't diagnosed until their 30s.
That's how I ended up in the doctor's office receiving my diagnosis, after a brain scan. The tumour in my head had been growing for years, and it was just starting to reveal itself, leaking fluid and pushing on the nerves that send signals to my arms and legs and causing the 'fuzziness' I felt.
Survival rates for this kind of tumour are high, at over 90 per cent, but that statistic hides just how debilitating it is to have a massive growth in your head. So does the fact that tumours like mine are 'benign', or non-cancerous. It wasn't necessarily good news. This only means that chemotherapy doesn't work, 'so we have to operate,' said the doctor. It would be a major surgery that required weeks of recovery, but that was meant to be fairly low-risk.
This is where my problems really started. A week after my diagnosis, I was introduced to the oncology team (who deal with benign tumours too) at Queen Elizabeth hospital in Birmingham, and the following month I had my operation. It was a planned two-hour surgery to remove the fluid that had leaked out, and then the tumour itself. When the doctors went to tackle the growth, though, my brain collapsed in on itself and I suffered a major stroke. When I woke up, I couldn't walk. I had lost most of my ability to speak, too. All I could say was 'yes' and 'go away'.
I'd been told by my surgeons that this could happen, but that the risk was 'less than 1 per cent'. Again, I thought that the unlucky person in every hundred would be someone else, and I'd soon be able to go back to my normal life. So I was unlucky twice, and left with little chance of ever walking or speaking normally again. It took a lot of rehab, speech therapy, and proton beam therapy (a kind of radiotherapy to incinerate and shrink the tumour since it can't be removed) for me to get back on my feet. I can speak normally now, but I still don't have movement in my right hand, and my right leg lags behind me when I walk. So much for football.
My life was far from normal. I was left with headaches and a massive amount of fatigue, but worst of all were my seizures. I had seven in as many months, and when each came, I was convinced that I was dying. I saw flashes of light, colours and patterns. Thankfully my mum is a nurse, and my sister is a paramedic, so there was always help to hand. I remember once coming around and seeing my mum and three of her friends – all nurses – standing over me. It was July 2020, and they'd been on a WhatsApp call when my seizure started. We live in a tiny village, so they all rushed over to help. Outside there were three ambulances and a paramedic car. It made me feel so ill and so helpless.
I was pretty much resigned to being ill forever. I was already on anti-seizure medication, and yet they kept coming. But my mum didn't give up hope: she and my oncologist, Dr Helen Benghiat, searched dozens of websites for clinical trials, and finally Dr Benghiat found a trial that I might have been eligible for in the United States, via the Sarah Cannon Research Institute UK (part of HCA Healthcare UK), for a new drug that could potentially shrink brain tumours. I haven't had a seizure since starting the trial in 2021, and my tumour has shrunk slightly. It certainly isn't growing, which means that I can get on with my recovery in a way that I couldn't before.
Being on a clinical trial changed my life in other ways, too. It gave me the chance to feel that I was making a real difference when my life had changed hugely, and I didn't know what the future would hold. I was surrounded by people on other trials for different types of cancers and there was a sense that we were all in it together. It also meant that I had access to regular check-ups and brain scans to monitor my progress, something I wouldn't have had on the NHS. The reassurance that all is going well has allowed me to move on in a way I never could have otherwise.
At 26, I still live at home with my parents, which isn't how I thought my life would be. I'm making progress, but I'm not the popular, care-free young man I was. One of the hardest and most shocking things about becoming seriously ill was seeing my friends disappear. I was well and truly 'ghosted': people I thought I was close with, and would have stuck with through anything, vanished completely. I imagine they just didn't want to think about the dark side of life that what happened to me had thrown up.
On the other hand, I've had support from places I never would have imagined. I started doing coffee mornings for The Brain Tumour Charity, which some of my old friends from school turned out to. One of those people was my girlfriend, Lucy. Six months ago she messaged me on Facebook asking for the details to come along. At the event itself, we clicked instantly, and we've been together ever since.
It's hard to picture the future when you have a serious illness. Not long ago, I thought I'd never get married or have kids – why burden someone else with a problem like this? But Lucy has changed all of that for me. I keep telling her that I won't blame her if this all becomes too much and she needs to leave, but she keeps telling me that she wants to be with me and to help me as I recover.
I'm back at work, with a part-time job managing mobile phone contracts for the NHS. Everyone I work with is incredibly understanding, giving me time off for appointments and fatigue when I just can't make it in. I finished my product design degree in three years despite my brain tumour. As part of my coursework I made a discreet seizure protection hat. At the time I was being told that I needed to wear a seizure helmet in case I hurt myself, but they're just so ugly and obvious. I couldn't imagine myself wearing one on a night out, and I knew lots of other people my age must have felt the same. I'd love to roll the cap out to other people. I wear it myself for now, just in case my seizures come back.
Now I'm a young ambassador for The Brain Tumour Charity. There were 21 of us in total when I joined, but now there are just 18. It's something that I do feel guilty about. As the first person in Britain to join the clinical trial that has let me lead a close-to-normal life, there's a cloud hanging over me, the sense that I was lucky when others weren't. That really hit home at the funeral for one of my best friends Harry Thompson, another ambassador, who died at the end of November last year. He was only 23.