Gav’s story

"I had to learn to walk again, as my mobility was shot - and with the loss of 75% of vision, it was soul-destroying. I had zero confidence and was fragile and vulnerable."

In November 1995, Gavin, from Salisbury, then 21, was playing in a local football match when the excruciating headache became too much, and his vision was blurred. Causing him to tell his teammates that he couldn't stay on the pitch a minute longer.

Gavin said: "I could either see three of the ball, or not see the ball at all."

By this point, Gavin, a carpenter, had been suffering from daily migraines for two and a half years. His visits to the GP (he thinks he made around eight during this time) had not revealed the cause. He'd even been rushed to Salisbury District Hospital on one occasion with suspected meningitis.

Without diagnoses, he was self-medicating to relieve the pain, which meant routinely taking more than the recommended number of daily painkillers. "Sometimes, I was on more than thirty a day".

The football game was the final straw. After driving home, Gavin booked another GP appointment, leading to a CT scan. After soldiering on with his symptoms for so long, Gavin was shocked to hear the news that the scan had found a lump the size of a pea.

"My first thought was, brilliant!" Gavin admits. "Now they'd found the cause, they could work out a way to get rid of the pain."

Gavin then had an urgent MRI scan in the mobile scanner that visited Salisbury every fortnight, there being no permanent scanners at the local hospital in those days.

Following this, he was referred to Southampton General Hospital's Neurology Department as a matter of urgency. Here he was told the tumour was, in fact, the size of an egg, and he was diagnosed with pilocytic astrocytoma. Medics thought the tumour might have been present, slowly growing, since he was about five years old.

A craniotomy was performed when it was decided that the tumour could not be removed due to its location, although shunts were fitted, and he woke up from surgery with 109 staples in his head and stomach. Sadly, he woke with extensive sight loss, many years later finding out that he had lost 75% of his sight.

Gavin said: "Tunnel vision in both eyes and totally blurred vision in my left means the 25% vision in my right eye has to do all the work for me. "It sounds odd, but immediately after the operation, I just knew I had to get on with things. I knew my sight had been badly affected; I needed extensive mobility training, including how to use a white cane, which was bloody tough and hard to deal with.

"Over the years it has been suggested I may want to consider a Guide Dog, but I am not ready for that (and yes, I am as stubborn as they come!)

"I always thought I'd lost maybe about 27% sight, but of course, I couldn't put a figure on it, not being an ophthalmologist. It took me years before I was brave enough to be assessed at the hospital, and when I heard the words "75%" loss - my heart just dropped.

"I believe earlier investigations, better knowledge and understanding of brain tumours by my GP, may have resulted in my sight or more of my sight saved.

"One of the hardest things is no longer being able to drive; it literally kills me, and I'm reminded of it constantly and even more so once I had children. And lots of other things as well."

The 4 December 2023 marked the 28th anniversary of Gavin's brain tumour diagnosis – and 28 years of living with a brain tumour that can't be removed.

Gavin confesses he finds it surreal to have lived with his brain tumour for so long. He has a tattoo that partly commemorates it, reading: "Always believe you can."

He explains: "It's a symbol of belief and hope, and the dates are the dates of my operation, the day I met my wife, the day we got married, and the births of our two nutjob kids! My wife, Lindsey is my rock. She's had health problems of her own, and I've supported her – but boy she has no idea what her help and support means to me.

"I wouldn't be here today if it wasn't for the continued help and support from all of my family and friends – I cannot thank them all enough."

In March 2024 he will celebrate his 50th birthday, and he is planning to mark it with a fundraising challenge to benefit The Brain Tumour Charity Calling it Always Believe You Can, Gav & Lou want 50 people to "join them in celebrating Gav's 50th year on this planet with 50 people completing a 25k walk, with a fundraising total of £25k."

Gavin adds: "When I was diagnosed, there really was nothing around. Social media was years away from being part of our lives. Mobile phones – bricks!. I have seen The Brain Tumour charity on TV and in the press and always liked what they have done to raise awareness and vital funds to fund research.

"I want to get involved, make a difference in some way - shout about living with a brain tumour and offer hope to others."

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The Brain Tumour Charity is the world's leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. Committed to saving and improving lives, we're moving further, faster to help every single person affected by a brain tumour.

We're set on finding new treatments, offering the highest level of support and driving urgent change. And we're doing it right now because we understand that when you, or someone you love, is diagnosed with a brain tumour, a cure really can't wait.