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
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
Freelance marine consultant and Master Mariner Paul Potter, from Pembrokeshire in Wales, was diagnosed with a brain tumour in 2012, when he was about to have treatment for prostate cancer. The low-grade meningioma wasn’t related to his cancer but it needed to be dealt with quickly, so his prostate treatment was put on hold while he underwent a craniotomy to remove the brain tumour. A keen cyclist, 65-year-old Paul is now fully recovered and is fundraising to help find a cure for the disease, with a cycling challenge he hopes will also spark conversations about brain tumours.Read more
It took four months of headaches gradually getting worse before Catherine was finally diagnosed. One day she had such blinding pain on the left side of her head that her husband called an ambulance and she was taken to A&E. Catherine was given a CT scan, leading to the discovery that she had a brain tumour, which later turned out to be a glioblastoma multiforme (GBM).
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.”
Craig Johnston was diagnosed with an astrocytic brain tumour in 2018. The 33-year old dad-of-two from Newton Aycliffe in County Durham has since had two brain surgeries, radiotherapy and is currently on his second course of chemotherapy to treat the cancer. Determined not to let his diagnosis defeat him, Craig has turned to fitness, setting himself ambitious goals as he tackles the disease head-on. He is now in training for the prestigious Ironman UK endurance event, due to take place in Bolton in July 2021, with the ultimate aim of earning a place in the Ironman world championships at Kona, Hawaii.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
Dan was at university when he started to suffer from crippling headaches which led to his eventual diagnosis with a grade 3 ependymoma brain tumour. Ten years on, he has had surgery three times and undergone radiotherapy. Although he lives with the knowledge that his tumour could return, he is optimistic about the future, having just moved into a new flat with his wife and working as a parliamentary researcher at Westminster.
After suffering seizures, former soldier Dan Mason, 33, was diagnosed with a pleomorphic xanthoastrocytoma – a very rare and incurable type of brain tumour. He was forced to quit the job he loved and lost his driving licence, yet still faced his diagnosis with positivity. A tattoo across his chest, which translates to ‘think positive, be strong’, reminds Dan to live in the moment, despite the pressure his illness places on him, his wife Roz and his children Caleb, 10, and Daisy, two.
“Emotionally, things were tough. I remember standing outside the hospital, in my army uniform, crying. My friends and family members didn’t know how to react or how to comfort me and that was really hard to deal with.”Read more