You can read part one of Ali’s story here.
One morning in mid-November, I headed back to the hospital with Cecily, having braced myself for the neuropathology report: a microscopic analysis of the tumour which would determine how bad things really were. It was possible – likely, even – that the euphemistically named ‘lesion’ was a cancerous tumour, but what would that mean? I hadn’t had the courage to Google it.
My surgeon ushered us both into a side-room. Straight from central casting, he wears a reassuringly smart suit and with it an aura of impenetrable confidence. He has a touch of Lord Flashheart about him and is relentlessly upbeat, able to say the most terrifying things with a reassuring twinkle in his eyes. I like him.
Sitting us down, he started: “Well, Alastair, I’m afraid it’s on the faster growing end of things. What do you want to know?”
I’d expected a well-honed template for The Talk, and so this surprised me. In hindsight, it was clearly a conscious effort to let me drive the conversation. Did I want all the grisly details? Or merely to know when my next hospital appointment would be? I opted for the former.
A high-grade glioma. Or, to use a word rarely uttered in oncology departments, cancer. All glioma, he explained, even the inappropriately named ‘low grade’ sort, are invariably fatal. My life expectancy at this point was 14 months. There were treatment options – radiotherapy, followed by a year-long course of chemotherapy – but they were only there to delay the inevitable relapse. “This is,” he said softly, but directly, “a battle we will lose.”
The meeting was calm, polite, and no more than 20 minutes long. I’ve had longer dentist appointments.
Walking out of St. Bart’s Hospital in London on a wet November morning, I felt blindsided by a catastrophic prognosis, grimmer than I thought was possible. Sensible thoughts: ‘How can I make sure Cecily is able to keep our flat?’ gave way to less sensible thoughts ‘Christ, I can’t believe I’m going to die before Grandpa.’
Cliché visions of what could have been – sitting plump and grey haired and surrounded by family – appeared before quickly going up in smoke. Not for the first time, I tried to focus on what I could control. And so, on a wooden bench outside St. Bart’s Hospital, I made that most terrible phone call to my parents, the one they had feared most.
When you’re handed a terminal diagnosis, it’s hard to engage with individual thoughts. It’s only after percolating things in your subconscious for a few days that you can begin to gain a sense of perspective. At the time, I worried I would spiral, letting panic, bitterness, desperation (or all three) get the better of me. (To this day I worry they will.) But instead, I felt only a profound sense of sadness for everything I would miss.
Strange as it may sound, the catastrophic nature and randomness of my diagnosis had some benefits. If I was terminally ill with a disease I could have avoided, I’d be consumed by guilt and regret. If the six months it took to be diagnosed had made a difference to my chances of survival, I’d be consumed with anger. If, instead, it was a diagnosis with a 50% chance of proving terminal, I’d drive myself mad with anxiety. But, as far as anyone can tell, brain cancer isn’t caused by anything in particular, and as soon as you’ve got it, the outcome is already fixed.
I even had a good sense of what it would all feel like – the initial growth of my tumour serving as a dress rehearsal of sorts. There are two exceptions to this quasi-acceptance. First, the spectre of an irreversible decline of physical health, which brings with it a deep sense of futility and depression. Secondly, and more profoundly, I feel the hole I will leave behind after my death, and the damage it will do to the people who love me. This fills me with an excruciating guilt. The logical part of my brain accepts that this is not my fault, but I can never shake it off.
The kingdom of the sick
And so, as instructed, I left the life of a typical 30-something and entered the colourless world of a cancer patient, the ‘kingdom of the sick’ as Susan Sontag put it. In this world you lose a semblance of your self – your job, your education, it all counts for nothing in the queue outside your doctor’s office.
Passing on the news turned out to be a heavy burden. “Why are you wearing a beanie indoors?” I was asked by the owner of a café one morning.
“I’m recovering from surgery,” I replied after a little hesitation, showing my scar. This only prompted further questions, with bleaker responses. Eventually, the café owner burst into tears. Still jumpy and anxious following surgery, I was terrified at the prospect of telling friends and acquaintances. I felt a million eyes on me, waiting to see how I’d react. At times, I removed WhatsApp so I could hide from well-meaning questions about how I was doing.
Every day, starting in December, I would traipse to my hospital for radiotherapy, bolted to a gurney with a ‘shell’ – a fluorescent green mask that fixes you firmly in place for the precisely aimed X-rays. As the vast machine activates, a strange siren drowns out Capital FM on the radio and your nose is immediately filled with an antiseptic smell – the radiation ionising oxygen in the air to make ozone.
Over the course of these trips, I got to know more patients, and a strange sense of fraternity emerged. I became friendly with an elderly man who travelled from Essex into central London each day, escorted by a neighbour. How lucky I was, I thought, to have a group of friends cheering me on, and to have family to support me unconditionally. It occurred to me how hard it would have been to have had the talk without Cecily sat by my side.
As it was, she knew all the facts, had even asked questions which I hadn’t dared to ask. She had turned our flat into a cocoon of convalescence and taken compassionate leave from work to take better care of me. I can’t bring myself to think what it must be like to do this on your own.
Eight weeks later, entirely bald and sunburned on the number 30 bus back home after my final radiotherapy scan, a group of friends sent over a cameo.com video they had commissioned of David Hasselhoff wishing me good luck for the next stage of my treatment. It was so daft – yet so poignant – that it reduced me to deranged sobs.
It’s a huge deal to come to terms with a brain tumour diagnosis. Our Support Team offers tailored information and advice, and can put you in touch with local groups that meet online and in person, so that you’re never alone. It can help to speak to others who have been or are going through a similar situation. You may even get to know someone like Ali who, in his next blog post here, finds the positives to cherish.