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
Indeg Glyn Roberts
Indeg from Rhoshirwaen in North Wales was just six when she was diagnosed with a grade 3 anaplastic ependymoma in November 2020. The shocking revelation came after months of vomiting, which doctors thought was caused by a virus. The schoolgirl had life-saving surgery at Alder Hey Hospital followed by months of proton beam therapy. Indeg also received chemotherapy as part of an international trial at Alder Hey in Liverpool. Now nine, Indeg leads a normal life and is monitored with regular scans.Read more
Angela Whicker, a mum-of-two from Milton Keynes, Buckinghamshire, was diagnosed with a brain tumour – later identified as a grade 3 astrocytoma – in November 2022 after suffering from focal seizures. The 45-year-old, who works for a housing association, underwent a debulking surgery and radiotherapy, and is now part-way through a 12-month course of chemotherapy.Read more
Colin Jamieson, of Emberton, Buckinghamshire, was diagnosed with two brain tumours, later identified as likely grade 1 subependymomas or ependymomas, in July 2018. For at least three years he had been suffering with headaches, sickness and tiredness, but these symptoms were attributed to migraines and him working long hours. It was only when he became violently sick, forgetful and unable to eat, drink or lift his head that he was sent to hospital and treated for severe hydrocephalus. The 59-year-old is now being monitored with regular scans having undergone two shunt surgeries, two debulking surgeries and radiotherapy. His wife, Antia, 45, has since been diagnosed with a meningioma, which is also being monitored.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
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
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
In May 2014, Dave Bolton, from the Wirral, Merseyside, suffered a nocturnal seizure, which led to the dad-of-two being diagnosed with a tennis ball-sized tumour in the frontal lobe of his brain. He underwent a life-saving craniotomy and the histology report showed it was a grade 2 astrocytoma, carrying with it a life expectancy of just five years. The Royal Air Force veteran, who was a serving police officer at the time of his diagnosis, was deemed unfit to resume full duties and was forced to take medical retirement. Dave went on to qualify as a strength and conditioning coach, specialising in rugby and combat sports and he set up a website to publicly document his treatment and diet regime, in order to support fellow patients. Seven years post-diagnosis, Dave’s scan results remain stable and he continues to offer advice and encouragement to others on similar journeys.Read more