Belfast dad once given 12 months to live defies the odds 14 years on with major charity cycle

He had his life prolonged after fighting for access to a drug denied to patients in Northern Ireland.

Meet John McAllister, a Belfast dad who was once given just 12 months to live. Fast-forward 14 years and John is still defying the odds as he prepares for his latest major charity cycle.

The father-of-five was told the devastating news back in 2011 that he was seriously ill with cancer. But he had his life prolonged after fighting for access to a drug denied to patients in Northern Ireland.

Diagnosed with melanoma skin cancer, John was originally told he had 12 months to live — but after pushing for further options, he enrolled in a clinical trial at the Royal Marsden in London. Immunotherapy and chemotherapy later led to scans showing no evidence of disease for over a decade.

READ MORE: Dad’s moving funeral tribute after death of Belfast teacher who faced cancer with ‘grace, courage and humour’READ MORE: Belfast Trust statement on children’s cancer treatments ‘delays’ amid nurse staffing issues

Today, John, 68 and from east Belfast, is a long-term cancer survivor who will shortly be taking on the 38-mile Tour de 4 ride to support Cancer Focus Northern Ireland.

John is due to take part in Sir Chris Hoy’s Tour de 4 fundraiser Riding Together Against Cancer on Sunday, September 7, cycling the 37.9 mile route which starts and ends at Glasgow’s velodrome.

But back to 14 years ago when John was diagnosed with metastatic malignant melanoma – melanoma that has spread from its original source.

He first went to the doctor when a mole on his back became itchy and irritated. In March 2011, he was diagnosed with malignant melanoma, which is one of the rarer types of skin cancer but also the most aggressive, and had the mole removed.

At the time, he and his family passionately wanted to ensure equal access to treatment that would improve his quality of life and prolong it in the hope that new and better drugs, or cures, would be developed in the future.

Sadly John was forced to go through the trauma of fighting to get drugs to extend his life – drugs that were available, through the Cancer Drugs Fund, in England but not in Northern Ireland.

He recalled: “Initially we didn’t realise the possible consequences of having malignant melanoma. When I went back in January 2012 for a check-up there were signs of cancer in the lymph nodes under my arm. That was when I realised that this was a cancer that could spread all through your body, killing you quite quickly. It was a massive, horrendous shock.

“In May 2012, I had a further four hour operation to remove the lymph nodes. That was pretty terrifying. I had no idea how I would come out the other side.”

Unfortunately, by the June further scans showed the cancer had spread in the arm and collar bone areas. John was told that further surgery would not be effective but he did get two courses of chemotherapy at Belfast City Hospital.

Because of the speed of the progression of the cancer and the negative prognosis, with his doctor’s support, John arranged a private visit to the Royal Marsden Hospital in London to get a second opinion and a range of treatments was recommended including the drug Ipilimumab, which was unlicensed by NICE but available to patients in England through the Cancer Drugs Fund.

“When we went back to the doctors at the City Hospital Belfast they said it was highly unlikely I would be given this drug due to its high cost. As you can imagine we were devastated that there might be a drug available which could extend my life for possibly many years, a drug that was already available to cancer patients in both England and the Republic of Ireland but not, apparently, to patients in Northern Ireland,” says John.

For John, he says it was then that the fight really started: “After lobbying our MLAs and generally making a nuisance of ourselves, we managed to get questions about the Cancer Drugs Fund raised in the Assembly and we also finally got an Individual Funding Request approved for Ipilimumab.

“The approval took two to three months, which was precious time to me. I was left anxious and worried about what I’d do if I wasn’t accepted. Incidentally, this drug was licensed by NICE a short time afterwards.”

Ipilimumab did extend John’s life, to the extent that he became fit enough to take part in a clinical trial at the Royal Marsden Hospital in London.

“It’s so unfair to force patients who are weak, tired and demoralised to fight for equal access. I can understand that a lot of people wouldn’t have the resolve to do that. Fortunately, I had tremendous support from my family and others,” he added.

With the help of life-prolonging drugs, John completed a 200 mile charity cycle from London to Paris in July 2014. In the years since, he has undertaken numerous fundraising events to support charities including Marie Curie.

“I was discharged from the Royal Marsden in 2022 because there had been over 10 years of scans with no evidence of disease. I was told that if I have a mole or something suspicious again, to contact my doctor or dermatologist but it seems to be very stable and pretty safe at the moment,” he added.

This year, John completed radiotherapy for prostate cancer as a preventative measure and is now back in training — taking on the slightly gentler route after a hip replacement that forced him to retire from his job as a fitness coach.

John, who previously ran a retail shop before moving into leisure work, says he’s determined to keep going and give back. He will join Sir Chris Hoy’s fundraising charity bike ride, Tour de 4, to raise awareness and funds for cancer charities across the UK.

The Olympian announced he had a terminal diagnosis for prostate cancer in October 2024. As well as raising funds for Cancer Focus NI, John and his fellow participants will also be challenging perceptions around living with Stage 4 cancer and giving hope to those in a similar position.

John has set up a GoFundMe page ahead of the event and has already raised several hundred pounds: “As a stage 4 cancer survivor, I want to support a good cause by raising money for Cancer Focus Northern Ireland and your contribution will make an impact, whether you donate a lot or a little. Anything helps. Thank you for your support.”

You can donate to John’s Tour De 4 Fundraiser to Fight Cancer here.

For all the latest news, visit the Belfast Live homepage here and sign up to our Be lifestyle newsletter for all the latest showbiz, fashion, beauty, family features and more.