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
Alex Mussard thought the ongoing hearing loss he was experiencing in his right ear was probably caused by listening to music too loudly through his headphones. Three years after his symptoms first appeared and following several misdiagnoses, the 27-year-old was finally diagnosed with an acoustic neuroma brain tumour. Describing himself in his Twitter bio as an ‘acoustic neuroma warrior’, Alex is now seven months post-surgery, back to his full-time job in finance and counting his blessings after his life-changing experience.Read more
Lyra was just five months old when she underwent emergency surgery to remove her tumour, a low-grade choroid plexus papilloma. Initially misdiagnosed as a virus, her symptoms had included a loss of appetite and vomiting. Now six, Lyra has released a cover of Christmas classic When A Child is Born, with funds being donated to the charity Brain Tumour Research.Read more
Laura was just 21 when she was diagnosed with a low-grade brain tumour. The swimming instructor and keen horse rider had suffered from debilitating symptoms for more than two years, including migraines, sickness, and psychosis, which were misdiagnosed as a mental illness. A year on from her diagnosis, she is still adjusting to life as a brain tumour patient. She’s at a crossroads as she decides whether to have further treatment. Her plans of moving into her own home and thinking about a family have been thrown into the air.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.”
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
Daniel BurridgeDaniel is the youngest of three children with an older brother and sister. In his last year at Dr Challoner’s Grammar School in Amersham, Daniel is studying for A’ Levels in Further Maths, Physics and Geography, having already taken Maths last year. He is applying to university to study Mechanical Engineering and hopes to get a place at Imperial or Bath.
Aged 17, Daniel was just 5ft, 5in tall, despite his Dad being 6ft 4in. Investigations led to him being diagnosed with a tumour on his pituitary gland, which fortunately turned out to be benign.
“Mum found the six-week wait to learn whether the tumour was benign or malignant much more worrying than me. It really affected her, especially as, unbeknown to me, she went online and looked up pituitary gland tumours and discovered that in 20 per cent of cases they are malignant. I was more worried about whether I was going to be able to continue boxing, which I had enjoyed so much for the past five years.” Read more
Former professional footballer Danielle Gibbons, from Chorley in Lancashire, was 23 when she was diagnosed with a low-grade brain tumour, growing on the vestibulocochlear nerve, which helps to control hearing and balance. Just over a year later she was back on the pitch and, in November 2015, she received a Special Recognition Award at her club’s Player of the Year Awards. She’s no longer playing football for a living but 27-year-old Danielle is channelling her active and competitive nature into a fundraising challenge to raise awareness of brain tumours.Read more
Danielle Louise Gould
After experiencing months of painful headaches and issues with her balance, flight attendant, Danielle Louise Gould was diagnosed with a cerebellar hemangioblastoma brain tumour in 2012. Though her tumour was categorised as low-grade and not aggressive, Danielle still had to undergo 8 surgeries to remove the tumour and control the fluid build-up on her brain. With the support of her family, boyfriend and twin sister Cherise, Danielle rebuilt her life after the tumour and remains determined to continue working on her bucket list of goals with her sister before they turn 30 next year.
“I was taken to the John Radcliffe Hospital in Oxford, where an MRI scan revealed the nature of my tumour. It showed I had a tumour the size of a pea called a cerebellar hemangioblastoma in the centre of my brain, surrounded by a layer of fluid. This build-up of fluid, the size of an egg, was pushing on the cerebellum, which is the part of my brain that controls balance, movement and coordination.”Read more
Darcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. She was still undergoing chemotherapy when her mother, Debbie was diagnosed with incurable cancer.
“Less than a year after Darcyana was diagnosed with a brain tumour, I found a lump in my breast…. I underwent a bone marrow biopsy which revealed that I had secondary breast cancer which had already spread to my bones. I didn’t think lightning could strike twice.”Read more
David has undergone surgery, radiotherapy and chemotherapy since being diagosed with a grade three anaplastic oligodendroglioma in July 2017. His tumour has caused a large social and economic burden as well as the psychological difficulties to not knowing what the future for him, his wife and their son, will bring.“It is difficult to convey just how much our lives have been changed by my diagnosis. I haven’t been given a prognosis as such, perhaps the doctors are scared to tell me. No-one knows how long I have had the tumour and, just now, I don’t know if I’ll be here for another four or five years or whether I’ve got as little as two months. It’s ironic to think that prior to my diagnosis I had stopped drinking, I’ve never smoked and have always been fit. It is hard to understand how this could happen to someone like me and not knowing what the future will bring is by far the hardest thing.” Read more