James, an entrepreneur from Brighton, was diagnosed with an astrocytoma following an eye test after experiencing migraines and visual disturbances. Days later, he had surgery to remove the 9cm tumour and has now completed radiotherapy and chemotherapy treatment and is on a watch and wait. Whilst undergoing treatment for brain cancer, 49-year-old James wrote a book about business and is sharing his story to raise awareness of the disease and the need to invest more into research to find kinder and more effective treatments.
James tells his story…
I used to work at conferences and events for the tech industry which involved lots of travel. I went to places all over the world, Singapore being a particular highlight. I spent 10 years of my life feeling jetlagged, but I’d built my own company from a small meet up to then working with millions.
In 2022 I sold my business and took the whole of 2023 off work with a view to starting a new business in 2024.
I’d just started writing a book about my business success and then I got a brain tumour.
For a while, I’d been getting migraines with visual disturbances. Looking at a screen, I’d see sparkly patterns in my field of vision. My headaches became frequent; on waking the pain would be there immediately. The GP said they were migraines and recommended to take pills, which went on for three months.
Because it was affecting my vision, I thought my symptoms could be related to eye health, so I went to Vision Express at Churchill Mall in Brighton for a check-up. They did all the tests and gave me an urgent referral for the eye hospital after seeing my optical discs were inflamed.
Upon leaving the appointment, I searched online for the possible cause and saw brain tumour as one of them.
A few days later I had an MRI scan at Royal Sussex County Hospital which revealed the tumour. The moment they called me through I knew it was going to be bad.
The two healthcare professionals in the meeting asked me a pile more questions and said they’d operate to remove the tumour as soon as they could. Eleven days later, neurosurgeon, Dr Sorin Buccur and his team removed around 90% of the mass which was diagnosed as an astrocytoma.
They’d prepared me that there could be further damage to my eyesight, however I didn’t notice any difference.
I went on combined radiotherapy and chemotherapy for six weeks and after a short break, had six months more of chemo which finished just last week at the end of November.
After my diagnosis, I looked at other various treatment options outside of the NHS standard of care, but nothing is available to me. There are other countries including France, which seem to be more advanced at offering a wider range of what is less invasive treatment for brain cancer patients.
Treatment such as Optune is a specialist non-invasive medical device which sends low intensity, alternating electrical waves – referred to as Tumour Treating Fields (TTF) – through your head. It’s something I’ve read a lot about however it just isn’t an option to me; the cost alone is tens of thousands of pounds per week. It’s just not viable for most patients.
Understanding foods serve my body, taking cold showers and using hypoxic breath work are now part of my lifestyle. However, I am willing to try a different treatment if it will help in eliminating the cancer.
I’m now on a watch and wait which means further treatment will be determined if anything changes with my tumour.
For years, within business I built communities, that was my job. Those communities and companionship have been vital for me throughout my diagnosis. I want to help be that support for other people going through their own diagnosis. For me, that means turning to science to help us find the answers which means we must encourage investment in research into brain tumours.
James Mayes
December 2024
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by James’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure