Dr Neville Collins, a retired vice principal and biochemistry PhD from Halifax in West Yorkshire, was diagnosed with a low-grade brain tumour in 2018 after months of undiagnosed symptoms including memory loss, confusion and mood changes. What began with a suspected seizure in 2017 was initially dismissed as a collapse by A&E doctors and later misattributed to memory issues. Following years of uncertainty and fragmented care, an eventual biopsy in 2025 confirmed Neville had an oligodendroglioma, a rare form of brain tumour. He has since undergone radiotherapy and is now on a 36-week course of chemotherapy. In 2026, his wife Georgina will take on the Rob Burrow Leeds Half Marathon to raise funds for Brain Tumour Research in his honour.
Here is Neville’s story, as told by his wife, Georgina...
Neville has always been someone who defies expectations. At 76, he is resilient, curious and physically active. He is a biochemist by training, a former college vice principal and a qualified counsellor. He is generous, deeply empathetic and mentally strong.
Before his diagnosis, we led an active life. Nev was a rugby player for 20 years and we enjoyed running, cycling, football, walking and the arts. Neville was always driven by a love of learning and connection with others. It made the sudden change in his behaviour all the more startling.
In November 2017, Neville was due to pick me up after filming for a Channel 5 documentary at my shop in Harrogate, but he didn’t arrive. When I called, his speech was jumbled and he made no sense.
At home, I found him sitting on the bed, unable to recognise me properly. He wandered aimlessly, confused and disoriented. We went to A&E at Harrogate District Hospital, where a doctor considered, but ultimately decided against performing a brain scan. The incident was recorded simply as a ‘collapse’, and we were sent home.
In the following weeks, Neville's memory and mood began to shift. He had difficulty recalling recent and long-term events. His behaviour became uncharacteristically antisocial and erratic. Concerned, I encouraged him to visit our GP with a written list of symptoms. He was given a standard memory test and referred to a memory clinic, but still no one considered a neurological cause.
Having passed the memory tests, Neville was offered the option of walking away or having a brain scan. Choosing to have a brain scan, when we went for the results, we were told that something had been found that would need an MRI, but that it was unlikely to be a tumour. In August 2018, we were referred to Leeds General Infirmary, where he was diagnosed with a glioma in the front left temporal lobe, classified as Grade 2.
“It will get you in the end,” the consultant said. There was no empathy and no clarity – just leaflets and the offer of a support nurse.
Thankfully, we were soon transferred to a different consultant who specialised in lower-grade tumours and who provided more compassionate care.
For several years, we monitored the tumour through regular MRIs. During that time, Neville also dealt with prostate cancer and began experiencing seizures. We now understand that the incident in 2017 was likely his first seizure. Unfortunately, his care was fragmented. Seizures were treated separately from the tumour, and we learnt more about how to recognise and cope with them from epilepsy charity websites than from medical professionals.
By 2023, things became harder. Neville’s seizures became more frequent, and his cognitive and physical health declined. The biopsy was scheduled for February 2025 after a long wait to take advice from an oncologist.
The result confirmed an oligodendroglioma, a rare type of glioma brain tumour. Neville began six weeks of radiotherapy between April and June and started a 36-week course of PCV chemotherapy in August. Each cycle involves an injection in hospital followed by ten days of oral chemotherapy, repeated every six weeks.
Although the journey has been long and difficult, we now have a clear path forward. Neville continues to suffer symptoms including memory loss, word-finding difficulty, mood swings, balance issues, headaches, seizures and visual problems. He has lost much of his independence, including the ability to drive. Yet he remains determined to keep going. He still goes to the gym with me when he can, finding strength through movement and enjoying exercise.
To support Neville and raise awareness, I’ve signed up for the Rob Burrow Leeds Half Marathon 2026, raising money for Brain Tumour Research.
Training has become a personal challenge and a way to turn something painful into something positive. Running helps me feel like I am doing something for him, and for others too.
We never thought this would be our story, but it is. Now we want to use our experience to help others. I hope that sharing our journey shines a light on the need for earlier diagnosis, joined-up care and, most of all, more research.
What shocks me most is how underfunded research into brain tumours is. So little progress has been made in the time we’ve been living with this disease and long before that too. Some treatments haven’t changed in decades. There is such a desperate need for better understanding, better diagnostics and better therapies, and that starts with proper funding.
For something that affects so many lives, the level of investment just doesn’t reflect the scale of the problem. That needs to change. If our story can help move the needle, even a little, then it’s worth telling.
Georgina Collins
September 2025
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 Neville’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.
