I keep a file on my phone. It is a list of clinical trials, academic papers, cutting-edge treatments I could try if my cancer ever comes back. To know my disease, I reason, is to beat it. In that regard, I understand my genetic status and how that could affect my chances with various immunotherapy drugs. I know the name of a good surgeon in Germany who has had excellent results. Should my cancer come back, I have a plan, an exit strategy that isn’t death.
When my father was told he had a terminal brain tumour, he thanked the doctor and went for a walk across the dunes with my mother. They sat in a cafe and drank coffee. Dad had a tuna and sweetcorn sandwich on white bread, a treat he allowed himself instead of his usual brown.
Over the next few days and weeks, Dad didn’t spend his time frantically Googling treatment options. He didn’t launch a GoFundMe campaign to pay for expensive treatment in America. He just accepted the doctor’s verdict. It wasn’t ideal, he said, the brain tumour, the terminal diagnosis, but there was nothing that could be done. Three months later, he died.
Since his death – and since my own experience with bowel cancer a few months after he died – I have been haunted by a question. Could Dad – and we as a family – have done anything to save his life?
It began with little blackouts, which the doctors thought were epileptic fits. They happened at night, and sometimes when he was running. When they found the tumour on a scan, they thought it was slow-growing, but Dad knew something wasn’t right.
The second scan confirmed what Dad suspected. It was a glioblastoma, the widow-maker of brain tumours. It was in the brain stem and couldn’t be removed by surgery. Radiotherapy was an option, but the doctor said it would be gruelling and might only give him a little more time. Dad was adamant. Thanks, but no thanks, he said, as if he had been receiving well-meaning but unwanted investment advice.
Would I have accepted the doctor’s verdict in the same way? A tuna sandwich and a coffee. A walk across the dunes. My case was different, of course. I had a dull, commonplace, and treatable cancer, with a much rosier prognosis (about a 30% chance of death over five years) than Dad’s aggressive brain tumour. While Dad’s cancer was the Spetsnaz special forces, mine was the catering corp.
But still. Still. When I had cancer, I learned the power of patient advocacy. I joined support groups and discussion forums on Facebook. Patients shared information about treatment options, interesting clinical trials: does anyone know a good doctor in New York who does laser treatment for lung metastases? Would hyperthermic intraperitoneal chemotherapy and surgery be too much for an 84-year-old?
Some of the stories were astounding. There were people who were told there was nothing the doctors could do, only to get a second or third opinion and have their lives saved by a clinical trial. There were people who paid for treatment abroad and came home cancer-free. Could Dad have done the same?
A few years after Dad died, I asked Mum why they placed so much faith in the doctors. I wondered about the fog of trauma, whether it had in any way impaired our collective judgment as a family. Doctors often recommend that cancer patients take notes or bring someone else with them for their appointments – especially the ones when they might be giving bad news. It’s good advice. You can enter a kind of dream state, the doctor’s words drifting over you, as if they were being said by someone else. Afterwards, punch-drunk, it can be hard to remember the details.
Why didn’t Dad seek a second opinion, I asked my mother? I trod carefully, concerned she would think I was being critical rather than just curious, not wanting to make her feel that I thought she could have done more.
She didn’t need to think about her answer. Why would they question the consultant, she said? All their lives they had had excellent doctors and healthcare on the NHS. Why would it be any different now? A few months before Dad’s terminal diagnosis, Mum had a heart attack. In rural Cornwall, the ambulance arrived in nine minutes and she was whisked to a specialist heart unit. “We had no reason not to believe the doctors,” she said.
Since Dad’s death, I have done what I never did at the time. I have researched what killed him. Glioblastoma multiforme. I read the internet forums of the newly diagnosed. I looked at various treatment options, promising clinical trials on the horizon.
Cancer treatment is full of what-ifs. We second-guess ourselves, our doctors. We doubt the choices we have made. What if we had pursued a second line of chemotherapy? The internet has complicated this already murky picture, changing the balance of power between doctor and patient. For better or worse, doctors, the old gatekeepers, no longer have a monopoly on medical knowledge. The democratisation of information can be a patient’s best friend, a path to advocacy and self-awareness. But as anyone who has ever Googled themselves into an early grave after experiencing a mild headache, it can be their worst enemy.
While I was researching Dad’s disease, it became clear that his decision, like everything he did in his life, was rational and sound. The cancer that he had, in the place that he had it, carried a dismal prognosis. Yes, some people survived, but only very rarely. Most, like him, succumbed to their disease.
Perhaps he could have got a few more months if he’d done something differently. Perhaps I could have convinced him to keep a file on his computer, just as I did, or sold him on a maverick cancer doctor in Singapore. But that wasn’t what he wanted.
And Dad always knew what he wanted from life. He knew what made him happy. Spending time with his family, listening to the radio. Warming up from a run with a hot coffee. Walking on the cliffs with my mother and their dog. Endlessly tinkering with his computer in the study.
Dad chose to die as he had lived: without fuss and without wanting to unduly trouble those he loved. He didn’t want to waste what precious time he had left trying to live longer. He wanted to see people rather than hospital wards. He went to visit old friends for lots of last suppers. He went with his mates from the Tandem Club for one last ride.
While I was researching the tumour that cruelly cut short his life, I realised something else. My desire to find out whether Dad could have done something, whether he could have done more to save or extend his life, was not about him, it was about me. It was about my refusal to let go, my anger that he – my beloved father – was taken long before his time.
• Luke Allnutt’s We Own The Sky is published by Trapeze at £14.99. To order a copy for £12.74, go to guardianbookshop.com.
