Claire Burden

Claire's fundraiser for The Brain Tumour Charity

Fundraising for The Brain Tumour Charity
£620
raised of £500 target
by 25 supporters
Event: Thames Bridges Trek 2024, on 14 September 2024 Start fundraising for this event
We are moving further, faster to help everyone affected by a brain tumour

Story

This is my Bruv who is a legend ⭐️

Gavin’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 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:

Louise Worthington is a dental hygienist from Salisbury who, in 2017 started to experience numbness down her left side; her face would drop, and she would be unable to talk properly for about sixty seconds.

After this happened three times over three days, she contacted her GP and was advised to come and see them immediately. The GP thought she might be suffering stroke symptoms or a TIA and sent her up to Salisbury District Hospital for an assessment.

There, she saw a stroke specialist who informed her that she definitely wasn't having a stroke. Told her to continue taking Ibuprofen and Paracetamol.

The numbness that Louise was experiencing ramped up daily, and she continued to visit her GP practice. “All of them told me that it was probably due to hormones and maybe pre-menopause. I was 47, so I believed it.”

A year and a half later, still experiencing numbness daily but thinking it must be hormones, Louise began experiencing focal seizures daily and having what she describes as a big one while out in a pub in Salisbury.

This resulted in her finally getting an MRI scan, immediately put on steroids and being admitted to the AMU.

“I was referred straight to Southampton General Hospital, where they diagnosed a rather large tumour that had pushed my brain over to the left side. 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.”

Bob turned out to be a grade II atypical benign meningioma, and he and his long roots had been completely removed.

“I also had to have the lining of my brain (the dura) removed and a meshy piece of gauze-like material used instead.

I then had to have my skull removed as it became badly infected after being screwed back on. Not a pleasant experience.”

Louise now has to have an MRI scan every two years as these types of tumours can grow back... she has told Bob, “he is not welcome back!!!!.”

“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. “

About the charity

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 and faster to help every single person affected by a brain tumour. A cure really can’t wait

Donation summary

Total raised
£620.00
+ £117.50 Gift Aid
Online donations
£620.00
Offline donations
£0.00

* Charities pay a small fee for our service. Find out how much it is and what we do for it.