This is part four of Ali’s story. If you’ve missed the first three parts, you can start at part one here.
Discovering more about my disease
“What… can I expect from chemotherapy?” I asked my oncologist that February, trying – but failing – to sound calm.
“Well, young man, most people tolerate it reasonably well,” came the (entirely unhelpful) response.
I found myself staring blankly at my first dose, aghast at what I was about to do. Was this all really happening? Was I really going to take these pills? As with all things though, chemotherapy cycles became routine. In time, I would plan what was slowly coming to feel like an ordinary life around the periods of high fatigue, nausea and depression that accompanied each monthly cycle.
I’d resolved to discover more about my disease. Brain cancers, I learned, are considered an ‘orphan disease’ – an area of unmet need and insufficient investment.
They’re highly complex and diverse; two patients presenting with a similar tumour may have no shared genetic mutations driving the cancer. They’re extremely difficult to treat, in a physically inaccessible, delicate, and poorly understood part of the body, hidden behind the mostly impenetrable blood-brain barrier.
No new drugs have been approved since 2005 – not surprising when you consider that only £15 million of the £40 million committed to brain cancer research by the government over the last five years was actually spent.
Finally, as cancers go, they’re rare, with 12000 primary brain tumour cases in the UK a year. But not that rare, and unusually deadly: responsible for nine percent of all cancer deaths, they top the oncological leader board as the biggest killer for adults under 40. Why, I found myself asking myself, had nobody considered it as a possibility?
As a result of these gloomy statistics, the attitude of most doctors falls somewhere between fatalism and nihilism. But from speaking to other patients, I learned it was possible to compare the genomic sequencing of a tumour tissue sample with that of healthy tissue, revealing the individual genetic changes responsible for the disease, and – with luck – vulnerabilities that can be exploited.
My oncology team advised me against it, preferring to keep to the NHS protocol – that is, complete my course of chemotherapy and then wait for the (inevitable) relapse. Still, I thought, if the tests did reveal a vulnerability, a chance to improve a 14-month prognosis – surely it was worth doing? Compared to the precision of personalised healthcare, the NHS protocol seemed woefully indiscriminate, like beating a dog to kill the fleas.
A parallel world
Armed with this genetic data, that summer I entered a parallel world of private care and personalised medicine. A lab in Germany created a ‘neoepitope vaccine’ – a personalised vaccination against the specific mutations found in my cancer cells.
When computational models predicted the chemotherapy I had been taking was probably causing hypermutation, an exacerbation of my disease, I changed it away from the NHS protocol. I spoke to expert neuro-oncologists across various countries, one of whom shared a 260-page document analysing my specific cancer and providing an overwhelming array of recommendations unique to me.
I corresponded with pharmacies in far-flung countries in pursuit of off-label medication (once being scammed out of thousands of pounds). This is the reality of being a brain cancer patient: just when you desperately want someone else to take control and tell you what to do, you have to become a combination of research scientist, charity fundraiser and project manager.
You are constantly having to assimilate advice that couldn’t be more different, yet which is invariably given with total conviction. The costs of pursuing private treatment can be prohibitive, even astronomical – sometimes in the 10s of thousands of pounds per month – but there is also the investment of time and energy. Hours spent researching, weighing up studies and deciding where to spend the dwindling budget, trying to weigh up risks and benefits.
Living scan to scan
Fast forward to today, and if you spent an evening sat next to me at a wedding, you could leave none the wiser. In time, I grew back (most of) the hair lost during radiotherapy – hiding the macabre scar that serves as a reminder of my surgery.
My cancer recurred, right on cue, last November – a more nimble, more evasive version of the intruder – but it has since stabilised. Was that because of the vaccine? Or my new chemotherapy? Would it have happened on its own? It’s impossible to say. All I know is that I’m grateful for the uneasy armistice, and to be the other side of the 14-month mark.
I live in a world of total uncertainty, living month to month, scan to scan (they call this ‘scanxiety’ in the cancer community). Managing my disease and seeking the best treatment possible can be stressful and time consuming – and you never forget you’re just one MRI away from being whisked into an operating theatre.
Finding meaning in the mundane
Yet, strange as it may sound, 2022 may have been the best year of my life. It was a year of ceaseless chemotherapy, of holidays rudely interrupted by seizures; a year in which bad news was never far away. Yet I find myself buoyant and enthusiastic about life. Nothing clarifies what’s important more than a profound shock to the system, and nobody could doubt I’d had one of those.
It was a year where I was my oldest friend’s best man and gave a speech at his wedding. A year where I met my two new nieces and got to know my parents as individuals. It was the year Cecily and I got married, me having proposed (rather opportunistically) while lying on a hospital bed. We designed a small, low-key ceremony – after all, there was no guarantee I would have the stamina to make it through the service, let alone the reception. As it happened though, we were up ‘till the small hours, dancing the night away, me bald as an egg. If you’d told me I’d be doing all that the previous November, I’d never have believed you.
As people, we all endeavour to leave our mark on the world, but are only ever scratching into ice – ultimately, everything is fleeting. Irrefutable knowledge of your own imminent demise underlines this, freeing you (to a large extent) from the prison of personal ambition, from vanity, pride, jealousy – all the nonsense that holds us back.
As I adjusted to my new circumstances, I felt I had broken free from a trap, where negative self-image and zealous self-policing conspired to make me joylessly chase what I didn’t have in life. Now, I realised, I already had everything I could have ever wanted, if only I could have seen past the end of my own nose.
Contracting cancer taught me an enormous amount about myself: where I can find uncomplicated joy, the importance of humour. It has deepened and enriched relationships – with my wife, my friends, my parents, who I had always been close to but now got to know as individuals. I don’t struggle to get out of bed or ruminate over a ‘bucket list’ of things I should complete – quite the opposite. I find meaning in the mundane and appreciate what I already have. I spent a lifetime chasing success; but now my very best days are often entirely uneventful.
It’s strange – if you had told me in 2021 that my headaches were terminal cancer, I would (understandably) have entered a mental tailspin, seen it as the end of everything. Instead, I’m happy. I’ve learnt a good life cut short is still a good life. I hope I will believe that to the end.
A huge thank you to Ali for sharing his story. You can read more personal experiences here.