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
Luke Webber had suffered with headaches and double vision for about a year before being diagnosed with a low-grade craniopharyngioma in 2020 at the age of 12. Now 15, Luke , from Stevenage in Hertfordshire, has undergone two surgeries and proton beam therapy, and is being monitored with regular scans. He has been left with a number of lifechanging chronic conditions.Read more
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
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
When Elaine Lee-Tubby, 47, was diagnosed with a brain tumour, she was taken back to the dark days of losing her dad to the disease just three years before. Now, 20 months on from her own diagnosis, she is determined to prove that living with a low-grade meningioma doesn’t stop her from leading a happy life. Having married her childhood sweetheart Shawn last August, she’s looking forward to a relaxed Christmas with her husband and their four daughters, Emma, 31, Carla, 26, Symone, 22, and Leah, 13, and will soon take on a festive fundraising frenzy for the Brain Tumour Research charity.
“Shawn was my tower of strength. After 33 years of being together and having spent two years planning our wedding, nothing was going to stop us getting married; not even a brain tumour. The day itself was beautiful and everything I could have dreamed of. It was such a positive occasion in light of a negative couple of years. I didn’t think about my tumour at all.”Read more
Originally diagnosed with a neurological condition which causes extreme fatigue, Elisha was told she had a brain tumour after she blacked out at the wheel of her car. With no treatment available and with an uncertain future, the 24-year-old carer is hoping to become a fashion model and to use her role as Miss Norfolk to raise awareness of the disease.
“I feel as if I have a heavy weight on my shoulders and I have gone through many different emotions. To begin with, I was angry that I had been told such devastating news yet there was no treatment. Sometimes I wonder if it would be better not to know and not to have to live with the constant anxiety and worry that every little ache or pain, every headache, might mean the tumour is growing.”Read more
A happy, intelligent and friendly child, Elizabeth was one of four children. She was just 12 when she was diagnosed with a tumour on her pituitary gland. The life-saving surgery and complications which followed left her irreparably damaged and she remained in hospital for nearly two years. Now aged 30, Elizabeth has spent most of her adult life in care.
“After Elizabeth’s surgery, we remained hopeful but realistic about her condition. We have never given up on her and, over the years, we have somehow found a way to carry on. While the pain becomes easier to bear I now have increasing worries about what will happen in say five or 10 years’ time. What if I am no longer around to ensure Elizabeth gets the care she needs?
We do our best to enjoy her better days. When Elizabeth is well she has a lovely sense of humour, a lopsided smile and a great wolf whistle!”Read more
Journalist, Ellen Beardmore, was floored when she found out she had a large tumour growing in her brain. Aged 25, she had a long life ahead of her… or did she? A 13-hour operation followed and fortunately it was a success. Despite losing her hearing in one ear, she left the hospital with a newfound appreciation for life and she hasn’t looked back since.
“A CAT scan followed and it was then that I heard the words that no one wants to hear. They’d found a big tumour in my brain. They said it had probably been growing since I was a teenager, in the background and had gone unnoticed. I desperately tried to think back and remember symptoms I might have missed or ignored; could that whooshing sound in my ear have been a warning sign?”Read more
Ten-year-old Elsie Pyner, from Newport Pagnell in Milton Keynes, Buckinghamshire, was diagnosed with a grade 4 medulloblastoma in March 2015 at the age of two. She underwent emergency brain surgery followed by five months of intensive chemotherapy, a second resection, high-dose chemotherapy and a stem cell transplant. She now requires the use of hearing aids and has posterior fossa syndrome, selective mutism and a processing delay. In March 2020, a routine MRI discovered that she had a second unrelated tumour, a low-grade juvenile pilocytic astrocytoma (JPA). Initially thought to be a relapse of her first tumour, Elsie’s parents were told to prepare for life-prolonging rather than life-saving treatment. The youngster underwent two further surgeries and is now being monitored with six-monthly scans.
Emily Corrigan put her headaches down to her hectic life as the mother of four young children. She got on with raising her family and put up with the pain and fatigue for two years before being diagnosed with a low-grade diffuse astrocytoma which was successfully removed during surgery. Emily was told she had a 50/50 chance of the tumour returning. In fact she has had two reoccurences and has undergone further surgery, as well as radiotherapy and chemotherapy. Emily battles with fatigue and low energy, but tries to stay positive for the sake of her children.Read more
Emily JonesEmily, a PhD student at Oxford University, was studying for a master’s degree at Exeter College in 2011 when she started to feel unwell. It was a year later when she was finally diagnosed with a malignant ependymoma brain tumour, having taken matters into her own hands and financed a private consultation that she could ill afford. Her journey of diagnosis and treatment, which has included extensive radiotherapy, has demonstrated some disparities in approaches to treatments in the UK for her condition. Read more
Emma Crabtree, 49, from Skipton in North Yorkshire started getting headaches at work and had problems with her coordination in 2009. When she lost the feeling on her left-hand side a stroke was suspected, but doctors assured her that nothing was wrong. When Emma’s headaches intensified, her mum insisted that she be given an MRI scan. The scan revealed she had a grade 4 glioblastoma multiforme (GBM) brain tumour and she was given just 12-18 months to live. Twelve years on, Emma is defying the odds.Read more
Baby Esmai Wright-Stanford, from Stoke-on-Trent in Staffordshire, was just seven months old when she was diagnosed with an anaplastic ependymoma tumour. Her shock diagnosis finally came after several trips back and forth to A&E and feeling like she wasn’t being taken seriously. Now Esmai’s mum Chloe wants to share her daughter’s story to help campaign for better research into detecting and treating childhood brain cancer.Read more