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
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
Alison was diagnosed with an acoustic neuroma at the age of 44 after suffering with headaches for many years. They gradually became worse until she was also having to cope with blurred vision, vomiting, exhaustion and even pain when walking. Alison’s diagnosis only came about after being sent for an emergency hospital appointment by an optician and her refusing to believe that all was fine after undergoing a range of tests, leading to her having an MRI scan.Read more
When Alison, from Seaton in Devon, first heard voices and buzzing she thought this could be a sign of epilepsy or hormone related. But, as the episodes became more frequent she was referred to Royal Devon and Exeter Hospital where an MRI scan showed a mass on her brain. Alison was diagnosed with an astrocytoma and has since had three operations and undergone gruelling radiotherapy and chemotherapy treatment. She shares her experience of living and working with a brain tumour and hopes to encourage others who have been diagnosed, demonstrating that, for some patients, it is possible to lead a fulfilling life after diagnosis.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
Teenager Amber Hanna, from Belfast, suffered from migraines for as long as she could remember. After several years of going back and forth to the doctor to try find the cause, her brain tumour diagnosis eventually came in February 2020, when her tumour burst and she was rushed to hospital having suffered a serious haemorrhage. Amber, 17, went on to have brain surgery to remove the low-grade tumour and is now, finally, on the road to recovery.Read more
Sales Manager Amy Drummond was just 13 years old when she began to experience small seizures and memory loss while studying for her GCSEs. After visiting numerous doctors in a bid to find out what was wrong with her, she was finally diagnosed with a rare type of brain tumour. Fortunately, Amy was able to have the tumour removed by surgery, but the tumour took its toll on her being able to enjoy teenage life too. Now, as she heads towards the milestone of turning 30, Amy is determind to not let her past affect her future.
“I have always been open with people about what I went through as a teenager and how it changed me as a person. Looking back, I missed out on school, socialising, dating, playing sport and even making friends. I would even say my brain tumour robbed me of my teenage years.”Read more
Amy was on honeymoon when she first experienced symptoms she later discovered were being caused by a brain tumour. Initially dismissed as an ear infection, her headaches were being caused by an acoustic neuroma. Treatment was initially delayed by her pregnancy and then once more during the coronavirus pandemic. Amy is now post-surgery, recovering well and waiting to hear what the future will bring.Read more
In September, three-year-old Anastasia Ogden, of Hailsham in East Sussex, was diagnosed with a fast-growing form of brain cancer known as atypical teratoid rhabdoid tumour (ATRT). After an emergency CT scan revealed her tumour was bleeding, causing it to expand and suffocate her brain, she underwent a life-saving surgery, where more than 90% of it was removed. It took her almost three weeks to come round fully and appease fears that she could have been left brain damaged. She has had two further surgeries to treat hydrocephalus, including one to have a shunt placed, and is now undergoing chemotherapy and radiotherapy.
After Anastasia from Romsey in Hampshire landed her dream job as a financial consultant she began to experience migraines. Concerned for her health, she had a private MRI scan and the day before her graduation from The University of Kent in March 2022, she was told she had an inoperable astrocytoma. At the age of 23 she has undergone fertility preservation before starting a long term course of chemotherapy. As she nears the end of her first intensive phase of treatment, Anastasia wants to share her story of what is like to be a young woman with a life-changing diagnosis.