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.
Recently published stories
Ten-year-old Jude Upton was diagnosed with a brain tumour, later identified as a grade 4 medulloblastoma, following a trip to Specsavers on his eighth birthday in March 2020. The youngster, from Milton Keynes in Buckinghamshire, had been suffering from a loss of balance, sickness, headaches, tiredness, a loss of appetite and changes in his personality. He underwent a craniotomy followed by chemotherapy, radiotherapy and further chemo, after which his tumour was stable. Sadly, in March this year, further growth was detected. He’s now completed two more cycles of chemo and is awaiting his next scan.Read more
In February 2021, Tom Claypole, 40, from Swanwick in Derbyshire, started suffering from constant headaches. Tom, dad to Shadean, 21, and Chardonnay, 17, went to his GP and his local hospital but they all said he had migraines. In August, one of Tom’s colleagues saw him black out while he was driving a van. Shortly after, he fell over and had a seizure. Tom’s fiancé took him straight to hospital where he had an MRI scan which revealed that Tom had a glioblastoma (GBM) brain tumour. Tom’s family has now embarked on a mammoth fundraising venture for Brain Tumour Research, aiming to raise £100,000 in three years.Read more
Twenty-two-year-old Olivia from Warwickshire had an isolated seizure in 2007, when she was just seven. After a medical check-up at Telford Hospital, she was discharged with no cause for concern. Nine years later, she began to have seizures during the night, waking up not knowing what had happened and these extended into the day. After biting the inside of her mouth during a seizure she was taken to hospital where a scan showed a mass on her brain. Due to the complexity of her tumour, Olivia’s diagnosis is thought to be a low-grade glioma or dysembryoplastic neuroepithelial tumour (DNET) after five years of clear scans, she remains on watch and wait.Read more
Harry MockettMusician Harry Mockett, 20, from Northampton, was diagnosed with a craniopharyngioma in May 2018, after suffering from vision problems. The tumour damaged Harry’s pituitary gland and he developed life-threatening complications from the surgery he needed to save his life. Thankfully, with the support of parents Sue and Ian, and sister Rosie, Harry is now doing well and is looking forward to releasing his debut EP ‘H.I.M.’ in June 2019. Read more
Two months after the global pandemic forced the UK into lockdown in March 2020, grandmother-of-seven Heather Quinlan, from Bude in Cornwall, was taken to Derriford Hospital for emergency brain surgery. At the time, the then 56-year-old’s symptoms were masked by other health conditions, including an underactive thyroid and left hip replacement, alongside her career and busy life caring for three of her grandchildren. After a period of ‘acting odd,’ a fall led doctors to discover a 23cm-long mass on her brain.Read more
Heather TurnerHeather was 24 when she was diagnosed with an acoustic neuroma, a low-grade brain tumour which caused partial hearing loss. The only treatment option was surgery but complications caused nerve damage leading to life-long difficulties including facial palsy and the loss of sight in one eye.
“It took me ten years to recover from the damage caused by surgery to remove my brain tumour. There have been times when I’ve wondered if life was still worth living. Although I have lost count of the number of operations I have had to make me look ‘normal’, I now feel as if the worst thing that ever happened to me has changed my life for the better.” Read more
Mother-of-two, Helen from Walsall in the West Midlands considers herself lucky after she was diagnosed with a meningioma in June 2021. After waking up feeling weak in a pool of her own urine due to a seizure in her sleep, Helen knew that something wasn’t right and was referred for an MRI scan which showed a mass on her brain. She had surgery to remove the tumour and is now monitored with regular scans. Helen is sharing her story to help other people come to terms with their own diagnoses and wants to make a positive difference and raise awareness of how underfunded research into brain tumours is.Read more
Hilary Kingsley, 77, from Wimbledon, was diagnosed with a brain tumour in 2016 after experiencing symptoms which were initially put down to low blood pressure. She underwent surgery, followed by radiotherapy and now lives with the effects of her treatment. She is sharing her story of hope to show that there can be life after a brain tumour diagnosis.Read more
Professional dancer Holly Dooley began experiencing mild seizures whilst on a tour of Russia. Having recently got married and looking forward to starting a family, her world was thrown into turmoil as it became clear from an MRI scan, that the seizures were caused by a tumour on the front right temporal lobe of the brain. Having endured numerous operations and radiotherapy over the last four years, Holly remains determined to stay positive and enjoy her life.
“It was time for my career as a professional dancer to end. I have achieved some amazing things over the years but having to close the curtain on the job I loved was heart-breaking.”Read more
GP Huw McCandless was struck down with a seizure whilst driving his family to a local beauty spot for a Boxing Day walk. He underwent surgery to remove a glioblastoma multiforme (GBM) brain tumour and now, less than four months later, he’s planning to celebrate his 33rd birthday with a 5K run to mark the end of radiotherapy and chemotherapy. He is also keen to get back to his job helping patients.
Husband, father and grandfather Ian was 55 was when he was diagnosed with a low-grade brain tumour. He underwent surgery and was able to return to work but began to experience seizures, now controlled by medication, as the tumour grew back. No other treatments are available and further operation to de-bulk the tumour is seen as a last resort.
“Telling my children I had a brain tumour is, without doubt, the worst thing I have ever had to do. I can’t bear to see them upset and it makes me sorry to think that their lives are tinged with sadness because of me but, it is what it is; I am still here and determined to enjoy whatever time I may have with them. For a while the tumour was dormant and like a walnut in my brain but now it is growing once more. There are no other treatments other than a de-bulking operation which would be the last resort. In many ways I feel as if a breakthrough with a new drug is the only hope I have and that is why the research being funded by the charity Brain Tumour Research is so vitally important.”Read more
Ian lives with his wife, Debi-Ann, and their beloved dogs. He believes in healthy living and follows a strict nutritional plan. Before he was diagnosed with a grade III oligodenroglioma, he had never had any serious illness or been admitted into hospital.Read more
Toddler Ingrid Newman was 15 months old when, in April 2020, she was diagnosed with a brain tumour. Her diagnosis came after she stopped walking, was constantly tired and wouldn’t smile. The brave tot has since had multiple surgeries and chemotherapy, to try to control the disease. When the standard of care chemotherapy seemed to stop working in May 2021, Ingrid went on a clinical trial of a new drug ALK inhibitor drug, usually used to treat lung cancer. Happily, that treatment seems to be working to shrink the tumour and Ingrid, who is about to turn three, is doing well. Her grandparents Fiona and Michael Bond, who run a cattle farm in Cornwall, recently made a donation to Brain Tumour Research, in acknowledgment of the need for greater funding to help secure more clinical trials in this vital area of cancer research.Read more