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
Professional DJ and keen rugby player, Rob Tillen, from Thornbury in South Gloucestershire, was diagnosed with a brain tumour in August 2021, after an optician sent him to A&E following a routine eye test. First suspected to have suffered a stroke, a CT scan revealed Rob had a mass in the left side of his brain and a biopsy later revealed it was a glioblastoma multiforme (GBM), meaning his prognosis is a stark 12 to 18 months. Following successful surgery to remove the tumour, Rob underwent radiotherapy and is currently on chemotherapy to try to delay the inevitable regrowth of his tumour. His fiancée, Annabel, who Rob is due to marry this summer, is fundraising to help pay for costly private treatment overseas, in a bid to extend his life.Read more
Emma Crabtree, 49, from Skipton in North Yorkshire started getting headaches at work and had problems with her coordination in 2009. When she lost the feeling on her left-hand side a stroke was suspected, but doctors assured her that nothing was wrong. When Emma’s headaches intensified, her mum insisted that she be given an MRI scan. The scan revealed she had a grade 4 glioblastoma multiforme (GBM) brain tumour and she was given just 12-18 months to live. Twelve years on, Emma is defying the odds.Read more
Mother-of-three Linda Goode, an identical triplet from Lewes in East Sussex, started experiencing problems with her speech in October 2021. After several noticeable incidents in less than a week, she went to A&E where a CT scan revealed a mass on her brain. On her way home from a subsequent appointment, she suffered a seizure in the car and was given the anti-seizure medication Keppra. Over the next couple of weeks, she struggled to hold a conversation and developed a fear of talking after learning that doing so triggered her seizures, although increasing her medication helped. In November she underwent a biopsy and debulking surgery and in December she was formally diagnosed with a grade 4 glioblastoma multiforme (GBM). The freelance PE teacher and advisor will be starting radiotherapy and chemotherapy in the New Year.Read more
In April 2020, as the UK was coming to terms with a national lockdown caused by the COVID-19 pandemic, the lives of the Wharton family from Flintshire were turned upside down for a completely different reason. Their only child, four-year-old Aaron, was diagnosed with a rare, aggressive form of brain cancer. Brave Aaron has since undergone brain surgery, radiotherapy and has had a gastrostomy feeding tube fitted. His latest scan results were stable but Aaron’s parents know that their son’s future is uncertain and they’re determined to make the most of every day together as a family.Read more
London lad, Adam Carroll, was on a work trip to New York when his brain tumour first revealed itself. Aged 33 at the time, Adam collapsed and was rushed to hospital where he was told the devastating news that he had a high-grade tumour. The months that followed weren’t without their drawbacks but, 18 months on, he is now putting his time and energy into running and fundraising for research into the disease.
“I’ve been through a lot but I truly believe my diagnosis has made me a better person – I’m so much more appreciative of life and I just want to do whatever I can to help others with this disease. By fundraising for research into brain tumours, I know I’m doing something positive.”Read more
Thirty-year-old Adam Dilley from Bedfordshire was just weeks away from becoming a dad when he and his partner Tasha were given the devastating news that he had an aggressive brain tumour. Adam’s shock diagnosis came after months of doctors misdiagnosing him with sinusitis, after he suffered symptoms including headaches, blurred vision and jaw pain. Adam underwent gruelling surgery to remove the tumour but was told it was very likely to grow back. Tasha is due to give birth to a baby boy next month.Read more
Alan PurvisUp until his brain tumour diagnosis, Alan Purvis, 50, held senior director positions in a number of large and medium-sized businesses. The successful businessman was also a keen cyclist, runner and mountain climber. The father-of-two from County Durham is still passionate about his hobbies and his profession but since receiving treatment for his tumour, he’s had to adapt his lifestyle and re-evaluate his career choices. Read more
Alan WilliamsMy husband Alan was diagnosed in 2007 with a brain tumour, following a seizure. It was just five years after his younger brother, James, passed away from the same devastating disease. Alan, 46, has been told that the tumour has now become very aggressive and, following recent further surgery at The Royal Victoria Hospital, Belfast, he is currently undergoing chemotherapy, under the care of The Cancer Centre in Belfast City Hospital.
“During our journey through this illness, Brainwaves NI has been our rock, offering advice and information when needed, as well as absolutely invaluable support from both the committee and members, all who have been affected in some way by this illness. The people behind this charity work tirelessly to raise funds for research into brain tumours which I believe will benefit so many people in the future who are affected by this terrible disease.” Read more
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
Seven-year-old Alexander’s brain tumour diagnosis and subsequent surgery and treatment were impacted by the COVID-19 pandemic. His devastated family now fear they have no other option than to crowdfund to help pay for a drugs trial and pioneering immunotherapy treatment in Germany which they believe is the only chance to save their beloved son’s life.Read more
Alexandra DixonAlexandra Dixon was diagnosed with a low-grade oligodendroglioma brain tumour after suffering a series of severe epileptic seizures while on holiday in the south of France. Back in the UK, she underwent surgery in June 2007. An MRI scan in 2012 revealed the tumour had returned. She had surgery again followed by radio and chemotherapy. Read more
Since Ali was diagnosed with a brain tumour and epilepsy in April 2005, she has faced life with a smile despite the ups-and-downs of her illness. Having a great support network around her – in particular her dog Harry, who was able to sense the onset of her seizures – she has taken everything in her stride. Now she has participated in an indoor skydive to help fund research into the disease.
“The 13 years that have passed since my diagnosis have been full of ups-and-downs but I am determined to beat each challenge and keep living my life to the full. I’m in a battle with my tumour and choose to use positive mental attitude, good humour and determination to keep on smiling.”Read more
Talented artist Amanda Day had always been top of the class and was hardworking at school, but when her health began to deteriorate, she started to fall behind. After struggling for months to get to the root of her symptoms, Amanda was diagnosed with a small pilocytic astrocytoma in her brainstem. Now, she is left with irreversible and long-term effects of the radiation treatment she had four years ago. She is coming to terms with the fact she may never achieve her aspirations of going to university, owning a home and having a child.
“It frustrates me that most of my symptoms are due to the radiotherapy treatment I had four years ago, as opposed to the tumour itself. The treatment has left me with long-term symptoms, such as short-term memory loss and confusion, which will get worse over time. It has had a devastating impact on my education and daily life is a big struggle.”Read more