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
After suffering with migraines during his recovery from leg lengthening surgery, in January 2021, Chae from Bude in Cornwall was given a CT scan which showed a lesion on his brain and he was diagnosed with a rare pilocytic astrocytoma. Inoperable due to its location, Chae had a biopsy which showed the tumour, initially thought to be grade 4 was in fact low-grade and he received combined radiotherapy and chemotherapy treatment followed by a gruelling six months of chemotherapy. After having to give up his dream of playing rugby professionally, 22-year-old Chae now relies on the full-time care of his mother, Maggie and is left with limited mobility and sight problems. Chae wants to share his story to help raise awareness of what it’s like to live with a brain tumour to help people understand how they can support a loved one after diagnosis.Read more
Julie Baker, 50, from Port Askaig on the Isle of Islay, was fit and very active in her community. The mum-of-three showed no signs of anything untoward, so when she had a seizure in November 2021, it came as a big shock. She was taken to hospital but was sent home after three days. Julie was not feeling right and went to see her GP who sent her to a different hospital for an MRI scan which revealed she had three meningioma brain tumours. In February 2022, Julie underwent surgery to have the largest tumour removed. Since then, she has suffered a number of infections, and she has also had temporary paralysis down her left-hand side.Read more
Alison was diagnosed with an acoustic neuroma at the age of 44 after suffering with headaches for many years. They gradually became worse until she was also having to cope with blurred vision, vomiting, exhaustion and even pain when walking. Alison’s diagnosis only came about after being sent for an emergency hospital appointment by an optician and her refusing to believe that all was fine after undergoing a range of tests, leading to her having an MRI scan.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
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
Aged 30, Dan Braiden, from Cosham, near Portsmouth, had already survived testicular cancer only to be told he had a highly aggressive and incurable brain tumour. The developer at The Insurance Factory, an insurance firm based in Portsmouth, had suffered from a number of symptoms including tingling sensations, before his diagnosis with a glioblastoma multiforme (GBM) in December 2019. Having had surgery and radiotherapy, Dan is trying to stay positive, with the support of his caring parents and loveable dog Winston.Read more