Friends take on Thames Bridges Trek for The Brain Tumour Charity

I had to learn to walk again and with the loss of 75% vision it was soul destroying. I had zero confidence and was so fragile.”  

Gavin

Gavin’s Story

In 1995, Gavin, from Salisbury, then 21, was playing football with friends when an excruciating headache and vision problems caused him to tell his team mates 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 with daily migraines for two and a half years.  He had even been rushed to Salisbury District Hospital on one occasion, with suspected meningitis – and visits to his GP had not revealed the cause.  Instead, he was self-medicating to get rid of the pain, which meant routinely “overdosing on painkillers – sometimes I was on more than 30 a day.”  The football game was the final straw.  After driving himself home, Gavin booked another GP appointment, which led 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 was diagnosed with a pilocytic astrocytoma.  Medics thought the tumour might have been present, slowly growing, since he was about five years old.  He underwent a craniotomy and shunts were put in but the tumour could not be fully removed due to its position. 

Devastatingly, despite efforts made in surgery to avoid this, Gavin lost 75% of his sight as a result of the condition.  Gavin says:

“It sounds odd, but immediately after the operation, I just got on with things. I knew my sight had been badly affected, but it took me a while to go and get it assessed, and find out just how badly.  When I heard the words “75%” my heart just dropped. 

“I believe that if GPs had investigated more, I could possibly have saved more of my sight.

“I had to learn to walk again and with the loss of 75% vision it was soul destroying. I had zero confidence and was so fragile.

“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.”

Last December marked the 27^th anniversary of Gavin’s brain tumour diagnosis. Gavin confesses he finds it surreal to have lived with his brain tumour for so long. He has a tattoo that partly commemorates his brain tumour battle:

“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!”

Taking on the Thames Bridges Trek

This month, Gavin will celebrate his 50^th birthday, and he wanted to mark the milestone with a fundraising challenge. He and close friend Louise have chosen The Thames Bridges Trek, on Saturday, September 14, 2024, and hope to head a team of 50 people, or more, to walk the 25k distance and meet the ambitious fundraising target of £25,000. 44 people have signed up so far and Gavin and Louise are confident they will meet their target team number.

“When I was diagnosed there really was nothing around, social media was years away from being part of our lives. I’ve seen the charity on TV and press and always liked what they have done in raising awareness and vital funds to fund research, etc.

“I really want to try and get involved and be a part of this journey and I know I have so much to offer in so many ways.

“I want to shout about living with this tumour for almost 28 years and at the same time am very conscious and respectful of those whose situations are sadly not the same as mine.”

Louise’s Story

I am extremely lucky to be alive and working and living well without Bob and without a piece of skull. I am very honoured to be helping Gavin with the walking challenge, hoping to raise awareness of brain tumour symptoms and lots of money for The Brain Tumour Charity."

Louise

Gavin’s friend Louise, a dental hygienist from Salisbury, started experiencing strange symptoms, including numbness down her left hand side, in 2017. Her face would drop and she would be unable to talk properly for short periods of time. Her GP sent her to Salisbury District Hospital where she saw a stroke specialist. Louise said:

“I was told I definitely wasn’t having a stroke and to continue taking ibuprofen and paracetamol. My numbness ramped up daily and I continued to see the GP and several different GPs at my practice.. All of whom told me that it was probably due to hormones and maybe pre menopause.. I was 47 so I believed it.”

The numbness persisted, however, and eighteen months later Louise started having focal seizures daily. This led to her finally getting an MRI scan. She was referred to Southampton General Hospital where she discovered she had a “rather large” brain tumour. Louise said: “They didn’t know if it was benign or malignant, and I thought my time was up. I was actually at peace with this as I was 48 years old and had had quite a good innings!

“A couple of weeks later “Bob” (as I named him) the unwanted lodger in my head was removed. He turned out to be a grade II atypical benign meningioma. They managed to get him all out, even his long roots. I had to have the lining of my brain (the dura) removed and a meshy piece of gauze like material placed in there. I then had to have my skull removed as it became badly infected after being screwed back on… Not a pleasant experience. I am however extremely lucky to be alive and working and living well without Bob and without a piece of skull.

“I now have MRI scans every 2 years as these types of tumour can grow back… I have told Bob though he is not welcome back! I am hoping to raise lots of awareness of brain tumour symptoms and also raise lots of money for the brain tumour charity. I am very honoured to be helping Gavin with the walking challenge.”

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