Cancer campaigner Robert Fisk is being brutally honest when he says: “I’ll probably be dead before any government in the UK recognises the need to put mental health support at the heart of all medical treatment.” The 45-year-old Daily Express journalist is battling incurable bowel cancer and learned that he might have as little as five years to live just over two years ago. I’ve written a will. I’ve visited a natural burial ground to find a nice place under the trees to rot away in an environmentally-friendly box,” he tells me. “I’ve even worked out what songs I want played at my funeral and how much it would cost to hire an ice cream van for after the service.”
But while Robert’s preparations for his death are all in place, he still has one more fight on his hands – one more box he wants to tick so he can rest in peace. The ultimate bucket list, if you will, albeit not that he will benefit from it. Earlier this year, Robert launched the Daily Express Cancer Care campaign to ensure all cancer patients get proper – prompt – access to mental health support both during and after their treatment. He is aiming to reach 10,000 signatures by September to prompt a response from the Government and ideally some action.
Robert, who has undergone more than 40 rounds of gruelling chemotherapy, explains: “I know cancer is the toughest ordeal many will face. But it’s as much a mental battle as it is physical. We believe the NHS should ensure mental health support. So we’re calling for funding for Holistic Needs Assessments for all NHS cancer patients.”
From his own experience, Robert knows that mental health problems are among the most profound complications of living with cancer. These challenges can start as soon as a patient is diagnosed, persist during their treatment and remain even after the all-clear.
In Robert’s case, a colonoscopy in the summer of 2023 discovered a massive tumour in his bowel, described by one of the medical team to him as “sinister.”
“I suppose I shouldn’t have been surprised when a day or two later I was told I have incurable bowel cancer,” he says stoically. “But the biggest cancer treatment side effect often gets ignored. They ask about every other side effect, but by not asking about mental health issues, they are missing the main one.”
Robert, who is single, is glad he didn’t have any children to explain his cancer to, but is concerned many patients have to break the news to their young families.
He did tell his sister and parents and says many cancer patients, himself included, suffer tremendous guilt at what the devastating news can do to loved ones. He also admits to feeling guilt at the cost of his treatment to the struggling NHS.
“I’m left to ponder questions about my worth in this world on my own because cancer and mental health support aren’t seen as going together in the NHS,” he explains. “That is why we are pushing for all cancer patients to get mental health support both during and after treatment.
“This will especially help as patients grapple with anxiety-inducing stages of treatment like waiting for scan results and other moments too like trying to cope with the guilt of missing their best friend’s ‘big’ birthday because they were feeling too sick to leave their home.”
For Robert, that anxiety hits him when he wakes up in the middle of night wondering when his cancer will stop responding to the chemo, wondering if every little ache and pain is the cancer spreading somewhere else, and thinking “is this as good as it gets?”
“I recently had a real scare about a pain in my spine but they don’t actually think it is cancer,” he admits. “But when you are lying there in bed at 3am, you think every little pain is cancer.”
And while medical staff run through a checklist of how he is coping with the debilitating side effects of his treatment, no one asks about his mental health.
“We must treat cancer patients as people, not just bodies that respond to treatment,” he explains. “We think all cancer patients should be given an assessment when they are first diagnosed and solutions should be put in place to solve problems relating to attendant mental health issues.
“Medical teams should monitor mental health at every appointment by asking questions so they can act and refer them to appropriate support. I hope to still be around to see the Cancer Care campaign as a springboard in that direction.”
Robert firmly believes mental health issues are a direct side-effect of cancer and the associated brutal treatments. He wants to see medical teams asking about how a patient is doing mentally at every single appointment, so they can be referred for specialist support or even just low-level help like a friendship group or an online forum.
Every fortnight, Robert has immunotherapy and chemotherapy, with MRI and CT scans every three months. Every other week, he has blood tests and a consultation with someone from his medical team.
Cancelled appointments and delayed consultations are also mentally challenging for patients but unfortunately a regular occurrence.
“One of the things I find difficult mentally is trying to fit in some kind of life around all the treatments and appointments, otherwise it becomes your whole life,” he says.
“I recently got a phone call from a consultant and he said, ‘Weren’t you expecting my call?’ I said, ‘Yes, about seven hours ago’. I was in a gallery with my parents. It’s so important to be able to live your life away from the cancer.
“I recently went to visit a friend in Northern Ireland and you are trying to fit it in around appointments and work out when you will feel well enough and which days the side effects will hit you the worst.”
Another mental challenge for cancer patients is coping with the devastating effect treatments have on their appearance.
Robert says: “I recently went to a work social and there were people who had joined the company since I’d been on sick leave so they didn’t know me before my diagnosis. Coping with social events when you look different is really hard. In my case it’s bald patches on my head and a bright pink face or rash from immunotherapy.
“Having to explain to people who don’t know you is hard but at the same time you don’t want to talk about cancer all the time because it’s boring.”
These are all issues cancer patients may need to talk about with a mental health professional or at least others in the same boat.
He adds: “My petition calls on the NHS and the Government to ensure that all cancer patients have a holistic needs assessment shortly after they are diagnosed.
“This will help medical teams understand an individual patient’s fears about treatment and even help them deal with everyday practical things like how to afford to get to appointments and how to talk to their boss about their diagnosis.
“Offering this assessment at the point of diagnosis, through treatment and at the end of a patient’s cancer journey would empower patients to battle some of the darkest demons they’ll ever face. It would also mean that mental health issues are seen as a real side-effect of cancer and the associated brutal treatments.
In a direct appeal to readers Robert implores: “My one remaining wish is for the Daily Express Cancer Care campaign to succeed. But I need your help to make the Government realise this needs to happen so please support us.”