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
When Charlotte Hughes, from York, started suffering from leg cramps and numbness in 2015, she never expected her symptoms would be related to brain cancer. Nearly a year after her symptoms began, Charlotte, a 43-year-old recruitment consultant, was diagnosed with two gliomas on the motor strip in her brain. Charlotte has since undergone three brain surgeries, the most recent being an awake craniotomy, during which she watched the Netflix period drama, Bridgerton, on her iPad! Charlotte is extremely grateful to the surgeon, oncologist and nurses who have helped her through her illness so far and she remains positive about the future.Read more
Edward was 29 when he suffered a seizure and was diagnosed with an anaplastic astrocytoma brain tumour. The tumour was high-grade and he was given a prognosis of just three to five years. He underwent surgery and treatment which left him with permanent hair loss and a misshapen skull. Four years on from his diagnosis, and together with his mum Julie, he is working with Brain Tumour Research to share his story and raise awareness of the disease which kills more children and adults under the age of 40 than any other cancer.Read more
Owen Copland from Liverpool, Merseyside, was diagnosed with an aggressive brain tumour in November 2020. The 20-year-old drama student has since undergone surgery and radiotherapy to treat the disease but devastatingly, his latest scan results revealed significant progression and his family has been told his prognosis is extremely stark.Read more
Gruff CrowtherSchoolboy Gruff Crowther was diagnosed with a brain tumour after minor but repeated difficulties with his eyesight. At the age of seven, he was the youngest patient to attend a reception at Speaker’s House, Westminster, in March 2016 when he joined the charity Brain Tumour Research in calling for more funding for the devastating disease.
“We have been very open with Gruff right from the start, telling him right from day one that he has a tumour and that means a lump of badly behaved cells which are reproducing incorrectly. He is aware that there are different types of brain tumour and different types of cancer. While Gruff’s tumour is low-grade we mustn’t been fooled into thinking that means it is benign – we are aware that the rate of growth can accelerate and things can become problematic. Left untreated, Gruff’s tumour would definitely have caused more problems as it spread. So far, his scans have shown the tumour has reduced in size and, for now, things are looking positive.”
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
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
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
Iona Alford was just 22 when she was diagnosed with a brain tumour, but says that, despite the shock, in many ways it changed her life for the better. Following surgery to remove a rare ganglioglioma her prognosis is good and she is looking forward to a once-in-a-lifetime trip to Australia.
“After my diagnosis, I changed my job and booked a once-in-a- lifetime trip to Australia for six months. Although it’s a big step, I’m so excited to start this adventure and I know my illness inspired me to take that leap. For many people, travelling is about finding yourself but, for me, it’s about putting myself back together.”Read more