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Gavin's story

Gavin shares his experience of being diagnosed with a brain tumour after years of having migraines. He also took part in the Great South Run in aid of our charity

Gavin's story was first published on the Brain & Spine Foundation website in 2010 and was updated in 2012.


I suffered severe migraines for 2 and a half years before eventually being diagnosed with a brain tumour. Before my diagnosis, my GP had repeatedly advised me to take painkillers for the migraines rather than investigating their cause.

Diagnosis

Eventually I went to Salisbury District Hospital where the consultant said my eyes were dry, so they gave me a CT scan straight away and said they had found a lump the size of a pea. They then booked me an MRI scan but I had to wait as back then it only came to Salisbury once every 2 weeks. I was then booked to see another consultant at Southampton who showed me my tumour (an optic pathway pilocytic astrocytoma) that was the size of an egg.

By the time of my eventual diagnosis, in 1996, I was 21. When I found out I was absolutely gutted, but my main thought was that I needed to get rid of the headaches.

Brain surgery

I was told I would have to have an operation to remove the tumour, and also that I only had 3 weeks to save my sight. However, because I had been taking a lot of Nurofen for the pain, my neurosurgeon said that there was a 50% chance of a haemorrhage during surgery and that the surgery had to be put back a week. Luckily my Mum acted as my secretary during this time and dealt with all the arrangements. I had a craniotomy, and two separate ventriculo-peritoneal shunts were fitted, one on the left side of my brain and one on the right.

Tunnel vision

When I came round from the operation, the surgeon told me that because of where the tumour was, it would have been too risky to remove it. They had simply removed a part of the tumour for a biopsy, which revealed that luckily the tumour was benign, and to this day it's sitting there in my brain. However, the operation had left me partially sighted, with tunnel vision in my right eye and blurred tunnel vision in my left eye. Even though I was still partially sighted, I was registered blind and had mobility training with a white cane.

Getting back on my feet

After my operation, it was very scary coming out into the world. Things were very different for me - I could no longer drive, for example - but I am a great believer in public transport. I set myself a goal to be up and running again in a year. I went to Salisbury College and got a City and Guilds qualification in teaching. I was also motivated to do good for others, and since my operation I have trekked across Africa raising money for Guide Dogs for the Blind, as well as completing The Great South Run for the Brain & Spine Foundation.

A massive achievement

Before my diagnosis I was a keen sports person and not being able to play football was a particular loss to me. Recently I have found a new way to occupy my time and that is golf, which I took up in February 2009. I have joined a local club and it's the best thing I ever did. Taking lessons has really helped me improve my game and in December 2009 I won the club's Stableford competition. This was a massive achievement for me and I hope my story might inspire others with visual impairment. Thanks to friends (new and old) who are happy to offer me lifts to and from various courses, golf has offered me a means of competing in a sport again, a way of relaxing and spending time with friends.

I am also the proud father of a beautiful daughter, Maisy and a little boy called Frankie, and the lucky boyfriend of my fantastic partner Lindsey who is a tower of strength to me.

Stay focused and set yourself goals

Dealing with the changes I have had to make because of my brain tumour has not been easy. I have got through by telling myself, as difficult as it is, that "I'll fight it!" To anyone else in a similar situation I would say, stay focused and set yourself goals. You have to be realistic, but life doesn't stop if you're visually impaired - it's just different.