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
After experiencing months of crippling migraines, sickness and balance issues sports-mad Chris was diagnosed with a brain tumour at just 15 years old as he was due to sit his mock GCSEs. Now 25 years on, Chris looks back and counts himself lucky that his tumour was low-grade and able to be removed by surgery, as many others are not so fortunate.
“When I was told I had a brain tumour and that it was the cause of all my symptoms that year, I was actually quite surprised, though my parents were obviously very upset. My initial thought was could I still play football and when could I leave to go see my friends. We were told that it was low-grade tumour, about the size of a golf ball and I would need surgery to remove it. There was and still is very little known about brain tumours and what causes them, so when the consultant said they were confident that they could get it all out, this news didn’t stop my parents from worrying about me.”Read more
Chris Brown, of Chesham in Buckinghamshire, was diagnosed with a mixed germ cell tumour (GCT) in May 2012 after an optician discovered that he had double vision and referred him for tests. He underwent a successful craniotomy but a subsequent scan revealed he had a second tumour, a pineal germinoma. The 37-year-old, whose journey was captured in the BBC Two documentary Brain Doctors, then underwent a biopsy followed by radiotherapy and Gamma Knife surgery. Now married and with a four-year-old daughter, his tumour remains stable but causes him extreme fatigue.Read more
Christine was in her fifties when she began to experience strange symptoms. She put these down to the menopause and stress at work but one night, when she was woken up by paramedics, she found herself at the start of a long and life-changing journey. She was diagnosed with a meningioma and underwent a seven-hour operation. Many ups and downs later, Christine is grateful to be alive, determined to live her life in the moment and not worry too much about the future.
“My experience taught me that you never know what’s around the corner. Within one day, my life turned upside down. I feel grateful that my tumour was low-grade, but I realise it still could have killed me. I don’t like planning ahead anymore because life can be so unpredictable. For now, I want to enjoy time with my family and live in the moment.”
Cindy, a 60-year-old grandmother thought that she was going through the menopause when she began to struggle with her balance in 2013. After numerous trips to the doctor, Cindy found out she had been living with a low-grade meningioma, that had been growing steadily over the last five years.“When the doctors came in to speak to me I thought: “If this is the menopause then I must have it really bad”. But when they said “brain tumour” I was relieved. Everything made sense.” Read more
Claire Bullimore’s brain tumour journey began in 2006, when, after several years of experiencing frequent headaches, she started suffering from debilitating migraines and blurred vision. Two years later, aged just 25, she was diagnosed with an intraventricular meningioma. Since then she has undergone brain surgery and had to give up her driving licence and her career. Claire, who is from South London, now lives with disabilities and a crippling anxiety disorder. Her story, however, is one of hope and positivity, as her life-changing diagnosis inspired her to create an online support network for other patients and survivors; a place for people to share stories and help raise awareness of brain tumours.Read more
Claire ButtonClaire was diagnosed with a brain tumour in 2008 after she was taken ill Camp Bastion, Afghanistan, and immediately evacuated back to the UK. Claire lives with her husband Phil and their daughter Ellen. Read more
For hairstylist Claire Messer, the last thing she could have imagined was causing her hearing loss was a large brain tumour. After being diagnosed in 2015, Claire’s meningioma was successfully treated with gamma knife radiotherapy and now she is eagerly awaiting the birth of her first grandchild. She has also fundraised with her husband, Rod, and two daughters, Chloe and Celine, raising over £4,000 for the Brain Tumour Research charity.
“I was in utter disbelief. I shed tears out of anger and thought ‘I’m too young for this’. My diagnosis was a short, sharp shock that made me think about my own mortality. It was the moment I realised I wasn’t indestructible. I’m so grateful to have had such excellent treatment and because of this I’m determined to help others in a similar situation.”Read more
Claire WhittleClaire, a French teacher at Stanton School in Milton Keynes, was diagnosed with a grade 2/3 astrocytoma in 2011, aged 51. She made a decision at the time that she wouldn’t be a victim and that she would live to be a grandmother. Nearly five years on she feels so blessed to still be here.
“I was given the news by a hard-nosed clinical nurse specialist because my neurosurgeon was called away on an emergency. She walked in with a big white envelope and bluntly stated: “I know all about it. There is no cure… but the good news is that you can have a bus pass.”
Former Royal Air Force (RAF) serviceman Cliff Comber, 63, enjoyed a 27-year career in the military before he left the forces as a Chief Technician (Chf Tech) in January 2003 and took up a civilian position with South Yorkshire Police. The grandfather, from Thurcroft near Rotherham, maintained his fitness after leaving the RAF, running eight miles a day to and from work and regularly taking part in numerous marathons, half marathons and running events. His world came crashing down, however, in November 2021, when he was diagnosed with an aggressive brain tumour. Cliff, an avid Crystal Palace FC fan, is currently on chemotherapy treatment and is coping well, while his family, including his wife Carol, tries to come to terms with the devastating diagnosis.Read more
Corin Snell, of Ixworth in Suffolk, is now registered blind having been diagnosed with a low-grade meningioma in February 2014. She had been experiencing persistent headaches and painful, weeping eyes for months but it was only after a visit to Specsavers opticians that the pressure on her optic nerve was detected and she was advised to go to the hospital. She has undergone two craniotomies, one in April 2014 and the other in November 2018, as well as a separate operation to have a shunt fitted. In February 2021 a routine check-up showed further growth and she was referred for six weeks of radiotherapy, the start of which was delayed so she could finally marry her fiancé in a ceremony that was postponed four times because of the COVID-19 pandemic.Read more