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Gavin's story

Gavin was diagnosed with a brain tumour in 1995, which caused sight loss of 75%. Gavin is a long-term supporter of the Brain and Spine Foundation, having attended many events including the Great South Run and our tenth Anniversary celebration.

Gavin's story was first published on the Brain & Spine Foundation website in 2010 and was updated in 2021.

 

It’s amazing to think I have now lived with the tumour for almost 25 years. I have had to overcome many hurdles and still am doing so to this day. Usually the pain, if any, is very manageable but the demands on life in general are greater.

Gavin was diagnosed with a brain tumour in 1995, which caused sight loss of 75%. Despite facing many challenges over the years, Gavin’s never-give-in attitude, the love of his family and his discovery of golf have helped him to thrive. Gavin is a long-term supporter of the Brain and Spine Foundation, having attended many events including the Great South Run and our tenth Anniversary celebration.

Twenty-five years ago, Gavin was a fit and active young man of 21, working as a carpenter in Salisbury while thinking about his career options. Free time often meant a group of friends getting together and playing football. In 1995 Gavin had been suffering from migraines for two years and when playing football had started to struggle with his vision.

One Sunday morning I was playing and I couldn’t work out whether I could see three footballs or no ball at all.

Gavin made an appointment with his GP and an urgent MRI brain scan followed, in a travelling mobile unit in the hospital car park (there were no on-site scanners at that time). The results of the MRI were about to change everything, forever. He was diagnosed with a brain tumour and in December 1995 at Southampton General Hospital, Gavin’s surgeon carried out a craniotomy to try and save his sight.

The medical team were cautiously hopeful they could remove the tumour but there was also a 50% chance of a brain haemorrhage due to the amount of Neurofen Gavin had been taking for the pain. Eight hours in theatre found that the tumour was lodged in an area too complex to remove safely without potential catastrophic side effects. It was the size of an egg. The medics believed Gavin could have harboured the slow-growing tumour since as young as five years old. The condition caused Gavin to suffer sight loss of 75%.

They told me this type of tumour was a one in a million chance. I was devastated to be told about my sight loss.

The tumour was benign and so all work from that point would be focussed on pain management and Gavin’s long-term welfare. Cerebral shunts had to be fitted into his skull to treat hydrocephalus, the swelling of the brain from the tumour. Three times in the three years that followed operations had been required to replace these shunts. They are still doing their job to this day.

Gavin adapted well, including turning a series of jobs into a varied and fulfilling career. One of his first jobs after rehabilitation was working with young adults with learning disabilities at Salisbury College, where he also studied for a further adult teaching qualification. He then went on to develop features for the Salisbury Journal, where he met his wife Lindsey and had their children Frankie, aged nine, and Maisy, aged 11.

Losing your sight is difficult to explain but we can all imagine it can’t we? In my case it has become more difficult over the years, I’m being put to the test all the time as I cope with my working career and now raising a family. I do have negative thoughts and sometimes wish I could just turn the lights off and rest, and be pain and stress free.

His home life was settled, which helped living with his condition immeasurably. But throughout Gavin’s struggles, he missed the ease of sociability and the competitive camaraderie that football offered him as a young man. Gavin can’t see any detail out of his left eye, as it is completely blurred, he does have what he describes as some ‘tunnel vision’ in his right eye. This had advantages, for instance he found that he could still enjoy going to watch Southampton FC.

If I stand well back from the pitch I can follow a lot of the action as it opens up the view. The club would have kindly given me a seat at pitch side but that wouldn’t have worked for me at all, as I would have had to concentrate so much more as my range of vision would have been limited (sometimes of course, you wanted to shut your eyes anyway, as the performances were that bad at times!).

In 2010, while waiting for a park and ride bus to work, Gavin had a chance meeting with the site manager, Pete, who was a keen golfer.

"I started to think that despite my vision issues I might be able to concentrate and focus on the golf ball when swinging a club. Pete actively encouraged me and said he’d gladly host me at his local club. Now, I hate getting lifts off people, feeling dependent on them, it’s one of my big issues, but I liked and trusted Pete and told him that if he could give me a lift one day, I’d love to try playing golf. I was soon having my first golf swings at Salisbury & South Wilts Golf Club. Obviously there were lots of good, bad and ugly shots but I connected with a few and I was hooked! I have been a member there ever since."

Gavin found if he connected well he could watch the start of the ball in the air in its travel. Like all golfers, he could also soon “feel it” around the impact of hitting the ball, knowing instinctively if the ball had gone to the right or the left.

Golf has been absolutely fantastic for me. It’s wonderful to be out in the fresh air, enjoying great company, and able to compete well at a sport. I feel comfortable; golf has changed a lot in recent years. It’s not so judgemental. I love being part of a group of friends and organising our golf trips.

Gavin found himself once again having to adapt quickly to a new situation when his wife Lindsey was diagnosed with breast cancer in January this year. It led to three operations in Southampton Hospital during lockdown. Gavin was naturally supportive through Lindsey’s trauma, including helping her through all the difficulties of patient care in the year of Covid-19, but an old vulnerability did come back to haunt him.

"Because I can no longer drive, I couldn’t help by giving Lindsey a lift in the car to hospital for major surgery, like any partner would want to do at this time. Lindsey’s mother had to 

do all that for me (she was fantastic) but it was heart-breaking for me as I felt totally helpless. It’s hard to explain, this lack of independence, but it is a very big issue for people with sight loss. Lindsey is completely clear of cancer now which is the most important thing. She has been so brave. She has always been such an inspiration to me as a business woman, working for herself, and as a wife, Mum and friend, and this has only continued and grown in recent times."

Recently, Gavin’s eyes have caused him added difficulty and he is aware that twenty five years of effort during his jobs has taken its toll. Acute eye strain and fatigue led him to decide a couple of weeks ago that he would call time on his full-time career for now. While looking into sport and disability online Gavin stumbled across the work of EDGA (formerly the European Disabled Golf Association), an international body that helps people of all abilities to thrive through golf. EDGA offers competitive opportunities to golfers all over Europe and beyond and such events may appeal to Gavin when COVID-19 is hopefully at bay next summer. England Golf holds an annual championship for golfers with disability and Gavin has fond memories of competing in such an event eight years ago.

"Wherever and whenever I do play next, I’ll be thanking my playing partners and also offering a little special thanks to Pete from the park and ride, whose positive talk about golf made such a great difference for me. I’m a very proud person. I never wanted the tag of being blind. My family and friends are so supportive and without them I wouldn’t be here today, that is for sure. Life has been difficult and I have had a couple of occasions where I have wanted to end it, but my willpower has kept me going. If I could combine what I have learned through my work, and my experience of living with 25 years of sight loss, and put that to helping young people, possibly through sport, that really could be quite satisfying."

This story was shared to the Brain and Spine Foundation with permission from Gavin. The original article was written by Ben Evans and has been adapted by the Brain and Spine Foundation.