Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
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Anna Binks, 43, from East Yorkshire, had an MRI scan in 2010 after blood tests revealed high prolactin levels. The scan found a suspected low-grade glioma which doctors were happy to monitor with regular scans. Ten years later, the mum-of-two started suffering from headaches and dizzy spells. She had another scan which found she had a diffuse astrocytoma brain tumour. Anna’s son, Jacob, seven, has taken on Brain Tumour Research’s One Million Keepy Uppy Challenge along with his teammates at South Cave Under 8’s Blacks to help fund a cure.Read more
Matt Schlag, 44, from York, started getting regular migraines so severe they were affecting his behaviour. After concerns from his manager, Matt got an MRI scan which revealed an anaplastic astrocytoma brain tumour. Matt, dad to Reuben, two, and Anja, five, has gone through two operations, radiotherapy and chemotherapy. He’s now working with Brain Tumour Research and raised £3,000 after successfully completing the London to Brighton cycle ride in September 2022.Read more
Voiceover artist Jill Kenton had the shock of her life when, after experiencing relatively minor symptoms, she was diagnosed with a low-grade brain tumour. Facing surgery and fearing the worst, Jill faced crippling anxiety and could barely leave the house before deciding to seek another opinion and “take back control”.Read more
Danielle Louise Gould
After experiencing months of painful headaches and issues with her balance, flight attendant, Danielle Louise Gould was diagnosed with a cerebellar hemangioblastoma brain tumour in 2012. Though her tumour was categorised as low-grade and not aggressive, Danielle still had to undergo 8 surgeries to remove the tumour and control the fluid build-up on her brain. With the support of her family, boyfriend and twin sister Cherise, Danielle rebuilt her life after the tumour and remains determined to continue working on her bucket list of goals with her sister before they turn 30 next year.
“I was taken to the John Radcliffe Hospital in Oxford, where an MRI scan revealed the nature of my tumour. It showed I had a tumour the size of a pea called a cerebellar hemangioblastoma in the centre of my brain, surrounded by a layer of fluid. This build-up of fluid, the size of an egg, was pushing on the cerebellum, which is the part of my brain that controls balance, movement and coordination.”Read more
Darcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. She was still undergoing chemotherapy when her mother, Debbie was diagnosed with incurable cancer.
“Less than a year after Darcyana was diagnosed with a brain tumour, I found a lump in my breast…. I underwent a bone marrow biopsy which revealed that I had secondary breast cancer which had already spread to my bones. I didn’t think lightning could strike twice.”Read more
In May 2014, Dave Bolton, from the Wirral, Merseyside, suffered a nocturnal seizure, which led to the dad-of-two being diagnosed with a tennis ball-sized tumour in the frontal lobe of his brain. He underwent a life-saving craniotomy and the histology report showed it was a grade 2 astrocytoma, carrying with it a life expectancy of just five years. The Royal Air Force veteran, who was a serving police officer at the time of his diagnosis, was deemed unfit to resume full duties and was forced to take medical retirement. Dave went on to qualify as a strength and conditioning coach, specialising in rugby and combat sports and he set up a website to publicly document his treatment and diet regime, in order to support fellow patients. Seven years post-diagnosis, Dave’s scan results remain stable and he continues to offer advice and encouragement to others on similar journeys.Read more
Father-of-four David Stubbs, from Stoke-on-Trent in Staffordshire, was diagnosed with a grade 1 meningioma in July 2021 at the age of 43, after suspected long COVID symptoms led to his diagnosis. As well as painful headaches and problems with his vision, David experienced a change in personality and extreme weight gain, later realising it was linked to his brain tumour. David lives with side effects of the tumour and is working with three leading brain tumour charities to raise awareness and fundraise to help other people living with their diagnosis.Read more
David has undergone surgery, radiotherapy and chemotherapy since being diagosed with a grade three anaplastic oligodendroglioma in July 2017. His tumour has caused a large social and economic burden as well as the psychological difficulties to not knowing what the future for him, his wife and their son, will bring.“It is difficult to convey just how much our lives have been changed by my diagnosis. I haven’t been given a prognosis as such, perhaps the doctors are scared to tell me. No-one knows how long I have had the tumour and, just now, I don’t know if I’ll be here for another four or five years or whether I’ve got as little as two months. It’s ironic to think that prior to my diagnosis I had stopped drinking, I’ve never smoked and have always been fit. It is hard to understand how this could happen to someone like me and not knowing what the future will bring is by far the hardest thing.” Read more
Mum-of-three Dawn Clark, 49, from Thornton-Cleveleys, first realised something was wrong in December 2011 when she kept hearing music that no-one else could hear. After experiencing the ‘frightening’ symptoms for two years, she went to her GP who thought she may have Meniere's disease, but an MRI scan revealed a shadow on her brain which, after a second brain operation in 2017, was confirmed as being an anaplastic oligodendroglioma. Dawn underwent radiotherapy and chemotherapy which made her very tired and sick. She now has a check-up scan every six months. Her most recent, in September 2021, showed there was no change to the tumour.Read more
Mechanic Debs Clarke suffered years of crippling back pain prior to being diagnosed with a grade two hemangiopericytoma (HPC) brain tumour in February 2017 at the age of 43. Despite being house bound and coming to terms with maybe not returning to the job she loved, her strong faith has allowed her to remain positive and thankful for every day. Though her tumour is rare, she has been told there is a small chance her sisters could carry the genes, and is now focused on ensuring her sisters are tested for the disease.
“When a nurse looked at me funny after having my CT, I had a bad feeling about the results as she looked really worried. I called my best friend Mel panicking and said “I have a brain tumour”, to which she told me to stop being silly, as it was “likely to be nothing serious as brain tumours are really rare”. My suspicions were confirmed when the doctor called me the following Monday.”
Deirdre Jackson, 58, from Westhill in Aberdeenshire, started getting daily headaches in 2008. She was becoming increasingly impatient, bad-tempered, and struggled to make decisions. A doctor told her that she was depressed and put her on anti-depressants, but another doctor suggested she have a scan which revealed she had a meningioma brain tumour which had probably been growing for more than 10 years. The property investor underwent an operation which successfully removed the whole tumour. Deirdre is now healthy, she doesn’t need any medication, and life goes on as it did before.Read more
Denise Fincham, 39, a stay-at-home mum from Eastchurch on the Isle of Sheppey in Kent, was diagnosed with three meningiomas in May 2020 after suffering from debilitating headaches and sudden vomiting. She underwent surgery to remove the largest of her tumours but suffered a bleed on her brain and a stroke, resulting in paralysis from below her neck. She was put on ‘suicide watch’ after claiming she no longer wanted to live and endured months of rehabilitation after which she was told it was unlikely she would ever walk again. After continued hard work, she began walking with aids and, after a set-back caused by a fall which necessitated a full hip replacement, Denise is now undertaking a fundraising challenge that will see her walk a half marathon distance in her home throughout the month of March.Read more