From super-fit cyclist to crippled by brain cancer: Jamie, 61, appeals for vital extra funding

Jamie Fairweather spent his holiday in Majorca earlier this year hiking, running and cycling.

A super-fit 61-year-old, had recently stepped back from a long career in finance to spend time with his family and was away with his wife Mary, 62, their sons Rory, 29, and Struan, 32, and young granddaughter, Ailsa .

When the mountain bike he rented to tour the island seemed a little wobbly, he blamed the bike.

But towards the end of their ten-day stay, he felt so unsteady on his feet that he wasn’t sure how to hold Ailsa, then 16 months. And when he and Mary checked in for their flight home to Gullane, East Lothian, on May 17, Jamie struggled to get his tickets out of his travel wallet.

He made an urgent appointment with his GP, who sent him for an MRI, which revealed “abnormalities” in his brain. An urgent biopsy followed.

Three agonizing weeks later, the couple received the results. They could not have been more devastating.

Jamie had two fast-growing gliomas, a type of tumor that occurs in the brain and spinal cord – in his case, a form called glioblastoma multiforme (GBM).

The tumors were inoperable and incurable. Jamie was offered six sessions of radiotherapy to slow their growth.

“For me, the most important thing in life is a positive outlook,” Jamie says, his voice breaking. ‘Forgive me if I cry. But with this disease, you walk into a room to be told that neither surgery nor chemotherapy will help. Even with radiotherapy you will be dead within 12 months. Then you go out into another room with a box of tissues. And that’s all. You are without hope.

Jamie and Mary drove home in silence.

“I’ve realized that one of my life skills is that I can drive very well while crying,” says Mary. “I cried and cried for weeks on end.”

The shock and devastating speed of the disease, she says, ‘has been like a wildfire, burning through our home and every part of life we ​​knew. Everyone – our children, our family, our friends – is traumatized by how quickly it’s happening.’

Brain tumors are the biggest cancer killer among people under the age of 40. Around 120 types of brain tumors affect 12,000 people in the UK each year. In the vast majority, the cause is not known.

About 2,200 cases of GBM are diagnosed each year. The average survival time is 12 to 18 months. Only 25 percent of patients survive more than a year and fewer than 10 percent survive after five years.

Despite being among the most difficult cancers to treat, GBM receives the least funding for research. Just 2 per cent of the £700m cancer research budget is dedicated to brain tumours, of which less than 1 per cent is spent on GBM. Consequently, survival has not changed in 40 years.

“There is no doubt that funding is a key issue,” said Professor Keyoumars Ashkan, consultant neurosurgeon at King’s College Hospital in London. “We saw during the Covid pandemic how focusing money on one area of ​​research can result in new, effective treatment in less than a year.”

In the latter part of his career, as CEO of Big Issue Invest (which provides loans to charities and social enterprises), Jamie became increasingly interested in how finance can drive social change.

His view is that pharmaceutical companies could be made to invest in less profitable diseases such as GBM in the same way that developers have to invest in social housing if they want to build luxury apartments.

“If you have a license to make billions by investing in conventional drugs, you should have a concurrent responsibility to invest in drugs that will not provide a huge financial return but will provide maximum benefit to devastating cancers like GBM,” he says.

“Imagine what doubling the research budget for GBM could reveal.”

Another factor that makes GBM so difficult to treat is that no two glioblastomas are the same, Professor Ashkan explains.

“It’s a very unstable tumor that changes rapidly,” he says. “And when we analyze tissue from the different areas of the tumor in the same patient, we find that each part has genetic variations.”

The hope is that personalized immunotherapy, which stimulates the patient’s immune system to fight their tumor, will bring better news for these patients, he says.

In a trial of a type of immunotherapy called DCVax-L in more than 90 hospitals worldwide, including the UK, immune cells and tumor cells from a patient’s blood were exposed to each other in a lab to “teach” the immune cells to recognize proteins associated with the patient’s cancer. The immune cells were then injected back into the patient. Preliminary results suggested that DCVax-L helps prolong the survival of GBM patients.

Meanwhile, a large trial of a cannabis-based drug called Sativex, used alongside chemotherapy, will start in 15 NHS hospitals.

“GBM cells have been shown to have receptors for cannabinoids on their surface,” explains Susan Short, Professor of Clinical Oncology and Neuro-Oncology at Leeds University, who is leading the study. Laboratory studies have shown that these drugs can slow tumor growth, especially when used with temozolomide (a form of chemotherapy).

But as Graham Norton, CEO of The Brain Tumor Charity, points out: “We need to ensure that brain tumor research reaches the level of investment that has driven such incredible progress in improving survival in other cancers.”

He says that while the charity is investing a further £40m by 2027, “others, including the pharmaceutical industry and government, must take action too”.

Six months since their vacation, the everyday life of the Fairweathers has changed beyond recognition.

“Our plans for retirement were modest,” says Mary. “We looked forward to precious time together, gardening and watching our grandson grow up. Everything has been torn away.

At the end of May, Jamie was able to enter the hospital. In June he was in a wheelchair. In August, he lost the use of the right side of his body as the tumors caused paralysis. By mid-September, he could no longer feed himself or use the bathroom independently.

They now have a 24-hour private carer, nurses and occupational therapists who have been in and out of the house “like nesting birds,” says Mary, inundating them with adaptive devices.

“The day the roof lift came I thought I was going to collapse,” says Mary. ‘Cause you look at it and think, “What’s this next step?” ‘

Such is the speed of the devastation wrought by GBM, that barely three weeks later came the next step that Mary feared.

On October 19, Jamie had a seizure that lasted 40 minutes. Mary describes it as “the most terrifying thing – I thought I had lost him that day”.

The attack left Jamie paralyzed. It’s a nightmare for a man who thrives on physical challenge.

Mary says: ‘Jamie has cycled the North Coast 500, Sea to Sea Whitehaven to Sunderland, Coast to Coast from Nairn to Loch Leven. He cycled 2,500 km in India and then helped build a workshop where we sponsored 60 boys to be trained as engineers so they could get jobs.

The sight of the elevator carrying her once strong man makes her cry.

When he wakes in the night, Jamie now lies motionless, legs trapped in braces, propped up with pillows, thinking about his death and how it will affect his family. His only wish now is to raise awareness of GBM.

“It’s not good for me at 61, but what if you’re 28 and you’ve just had your first child,” he says as his eyes fill with tears again. “It’s heartbreaking to think about other families going through this; for the children who get this death sentence.’

He knows he has months to live at best but has set himself one last goal: “A small amount of investment in research would make a huge difference in finding treatments. It’s the right thing to do. I would love that that discussion started in my lifetime.’