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).
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
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
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
Amanda StevensFreelance training consultant Amanda Stevens, 42, was diagnosed with a grade 2 meningioma in June 2016, after suffering from persistent headaches. She married her partner of 24 years, Ian, nine months after her diagnosis and thought she’d seen the back of her illness when, in August 2018, her tumour recurred. Now, five months on from a gruelling 11-hour operation, Amanda is doing well and is keen to help raise awareness by holding a fundraising ball on Wear A Hat Day. Read more
The eldest of three sisters, Amani Liaquat was diagnosed with an aggressive brain tumour after collapsing at home on her 22nd birthday in April 2020. The coronavirus lockdown meant she had to endure brain surgery and numerous scans with no visitors allowed at her bedside during a 12-day stay in hospital. After standard of care failed to stop the growth of her tumour the family were left in the difficult position of having to source lifesaving treatment from Germany. Thanks to the generosity of family, friends and complete strangers, over £100,000 was quickly raised to help finance this.Read more