‘I’ve had the worst diagnosis. Now I want to raise awareness of brain cancer’

At the start of this year, James Fairweather was looking forward to a retirement spent cycling, running, playing golf and enjoying time with his first grandchild. A fit and healthy 61-year-old, he’d had a long and illustrious career in finance and social investment, becoming part of the Big Issue family in 2015, as chief executive of Big Issue Invest – the social investment arm of Big Issue Group. 

James was celebrating his birthday in Mallorca with friends and family when he realised something was wrong. His balance was off, and by the end of the holiday he wasn’t even confident enough to hold his granddaughter. 

On May 17 he flew back to the UK. One week later, his life changed forever. He was diagnosed with glioblastoma, an aggressive brain cancer with an average life expectancy of 12 months. He and his wife Mary tell The Big Issue they want to use their experience to shine a light on an under-researched and under-funded disease.

James: ‘I used to drive an Audi Q3. I now have an electric wheelchair’

I’m very target-orientated. This year, my target was to get my golf handicap down to 15. I took a series of lessons, and at the end of February I was playing to a 15 handicap. I was really looking forward to the first tournament. I went out and was 20 shots worse than my previous scoring in February. I was completely disgusted, so I played again. I was about 25 shots worse. So, I had an indication in March that my balance wasn’t quite what it should be. 

In May, I went out to Mallorca for my birthday celebration. I had 10 days’ cycling, running and golfing with friends. My golf was a disaster. I fell off my bike in Palma. I was coming in from running with blood over my left ankle because my right foot was rubbing against it. I gradually noticed that I was unable to feel confident holding my granddaughter. Then at the airport, I couldn’t grip the tickets for the flight.  

I lost my independence on June 2. That’s how long it takes to completely close your life down. The paralysis set in, so I have very limited movement on my right side. I used to drive an Audi Q3. I now have an electric wheelchair and a Motability scooter. Surreal doesn’t really cover it. I’m 61, I was 65 kilos. I was fit and healthy. I love good, fresh food. I haven’t abused my body. And it has completely devastated my life. Over the course of the last four or five years, I’ve been unwinding my non-executive roles to retire. I was looking forward to winding down. I’m passionate about gardening. I love fresh air, cycling, walking. I’m a very average golfer. I was looking forward to all of those things. 

We got told on the Wednesday afternoon that I had an average life expectancy of 12 months. On the Thursday, I remember getting up and thinking, “Oh well, that’s 364 coffees to go”. Then on the Friday, it was 363 coffees. That day and a half was incredibly bleak. I wouldn’t want to go through it again.  

Then I went into the Western General Hospital in Edinburgh. They got me fitted for a Hannibal Lecter-type mask which is what they put the radio waves through. They were brilliant. So positive, kind and energising. I remember coming out and thinking, I can do this. I don’t know how long it’s going to be, but averages are there to be beaten. I can really embrace the challenge. It was the nursing staff and the radiologists who made me see that. 

I want to raise awareness of brain cancer. Pharmaceutical companies don’t focus on it because they can’t make any money. In the UK, 12,000 people are diagnosed with a brain tumour every year. It’s the largest cancer killer in the under 40s. It’s the biggest cause of preventable blindness in children. It takes 500 children a year. Are those numbers really irrelevant? 

I am so lucky to be in an Edinburgh postcode. I had 15 minutes between my CT scan and my MRI. I heard of a friend of my son’s whose father, from a CT scan to an MRI, was six weeks. If he had my tumour, that’s a death sentence. If it’s untreated, it’s six weeks of life expectancy. The variety of care and the postcode lottery that you have across the UK is really quite alarming. 

I’d love to get somebody to ask a question in the Houses of Parliament, about how we can move the agenda forward. If I can shine a light on it, create some momentum and some outrage, we can maybe see some form of government action. I would love to see something happen that reflected the devastation that this causes.  

On September 16, a friend is going to take me up in her microlight aircraft. I’m using it to raise awareness of the condition, and money for the Brain Tumour Charity. Since the JustGiving page went live, it’s been incredible. The generosity and the empathy. [James has raised more than £30k so far.] 

I get lots of positive energy out of the comments I’m getting from the JustGiving page. I’m not enjoying the journey but I feel energised by the money that’s coming in, the comments coming in, and the hope that I might be able to make a small mark. I promise to keep going, as long as I’m relevant. 

In recent weeks, I’ve really enjoyed spending real quality time, meaningful time with both my boys and their other halves and my granddaughter. It’s been very special in a way that I could never have imagined. We’ve had conversations that I could never have imagined having. 

Mary: ‘The pain you feel is the price of love’

It has carpet-bombed our life completely. The palliative care team come in before you’ve even had a chance to get your head round your diagnosis. They’re just doing their job, but it is actually a horror. 

The boys [James and Mary have two sons: Struan, 32, and Rory, 29] were absolutely shattered because they adore their father. He has been the master of this ship. He is such an intelligent person to run any question past and the boys have always looked to him for sound advice. 

My younger son said, nothing in life makes sense without Dad. And I thought that was a very clever way of summing it up. The pain you feel is the price of love. When you really, truly love somebody, this is absolute agony, but love conquers all. And that is what we’re doing. We are continuing to love him and give him the best care he can have.

We were horrified to discover this is a cancer that no one really is looking at. The Brain Tumour Charity is the biggest funder of cancer research into brain tumours. Why is it a charity that is the biggest investor into that research? Why is it not government funded? Do we not matter? Do people with brain cancer not matter?  

Learn more about the signs and symptoms of a brain tumour here

James is raising money for The Brain Tumour Charity. You can donate to his JustGiving page here

This article is taken from The Big Issue magazine, which exists to give homeless, long-term unemployed and marginalised people the opportunity to earn an income.

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