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
After suffering with migraines during his recovery from leg lengthening surgery, in January 2021, Chae from Bude in Cornwall was given a CT scan which showed a lesion on his brain and he was diagnosed with a rare pilocytic astrocytoma. Inoperable due to its location, Chae had a biopsy which showed the tumour, initially thought to be grade 4 was in fact low-grade and he received combined radiotherapy and chemotherapy treatment followed by a gruelling six months of chemotherapy. After having to give up his dream of playing rugby professionally, 22-year-old Chae now relies on the full-time care of his mother, Maggie and is left with limited mobility and sight problems. Chae wants to share his story to help raise awareness of what it’s like to live with a brain tumour to help people understand how they can support a loved one after diagnosis.Read more
Julie Baker, 50, from Port Askaig on the Isle of Islay, was fit and very active in her community. The mum-of-three showed no signs of anything untoward, so when she had a seizure in November 2021, it came as a big shock. She was taken to hospital but was sent home after three days. Julie was not feeling right and went to see her GP who sent her to a different hospital for an MRI scan which revealed she had three meningioma brain tumours. In February 2022, Julie underwent surgery to have the largest tumour removed. Since then, she has suffered a number of infections, and she has also had temporary paralysis down her left-hand side.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
Mum-of-three Dawn Clark, 49, from Thornton-Cleveleys, first realised something was wrong in December 2011 when she kept hearing music that no-one else could hear. After experiencing the ‘frightening’ symptoms for two years, she went to her GP who thought she may have Meniere's disease, but an MRI scan revealed a shadow on her brain which, after a second brain operation in 2017, was confirmed as being an anaplastic oligodendroglioma. Dawn underwent radiotherapy and chemotherapy which made her very tired and sick. She now has a check-up scan every six months. Her most recent, in September 2021, showed there was no change to the tumour.Read more
Mechanic Debs Clarke suffered years of crippling back pain prior to being diagnosed with a grade two hemangiopericytoma (HPC) brain tumour in February 2017 at the age of 43. Despite being house bound and coming to terms with maybe not returning to the job she loved, her strong faith has allowed her to remain positive and thankful for every day. Though her tumour is rare, she has been told there is a small chance her sisters could carry the genes, and is now focused on ensuring her sisters are tested for the disease.
“When a nurse looked at me funny after having my CT, I had a bad feeling about the results as she looked really worried. I called my best friend Mel panicking and said “I have a brain tumour”, to which she told me to stop being silly, as it was “likely to be nothing serious as brain tumours are really rare”. My suspicions were confirmed when the doctor called me the following Monday.”
Deirdre Jackson, 58, from Westhill in Aberdeenshire, started getting daily headaches in 2008. She was becoming increasingly impatient, bad-tempered, and struggled to make decisions. A doctor told her that she was depressed and put her on anti-depressants, but another doctor suggested she have a scan which revealed she had a meningioma brain tumour which had probably been growing for more than 10 years. The property investor underwent an operation which successfully removed the whole tumour. Deirdre is now healthy, she doesn’t need any medication, and life goes on as it did before.Read more
Denise Fincham, 39, a stay-at-home mum from Eastchurch on the Isle of Sheppey in Kent, was diagnosed with three meningiomas in May 2020 after suffering from debilitating headaches and sudden vomiting. She underwent surgery to remove the largest of her tumours but suffered a bleed on her brain and a stroke, resulting in paralysis from below her neck. She was put on ‘suicide watch’ after claiming she no longer wanted to live and endured months of rehabilitation after which she was told it was unlikely she would ever walk again. After continued hard work, she began walking with aids and, after a set-back caused by a fall which necessitated a full hip replacement, Denise is now undertaking a fundraising challenge that will see her walk a half marathon distance in her home throughout the month of March.Read more
Edward was 29 when he suffered a seizure and was diagnosed with an anaplastic astrocytoma brain tumour. The tumour was high-grade and he was given a prognosis of just three to five years. He underwent surgery and treatment which left him with permanent hair loss and a misshapen skull. Four years on from his diagnosis, and together with his mum Julie, he is working with Brain Tumour Research to share his story and raise awareness of the disease which kills more children and adults under the age of 40 than any other cancer.Read more
When Elaine Lee-Tubby, 47, was diagnosed with a brain tumour, she was taken back to the dark days of losing her dad to the disease just three years before. Now, 20 months on from her own diagnosis, she is determined to prove that living with a low-grade meningioma doesn’t stop her from leading a happy life. Having married her childhood sweetheart Shawn last August, she’s looking forward to a relaxed Christmas with her husband and their four daughters, Emma, 31, Carla, 26, Symone, 22, and Leah, 13, and will soon take on a festive fundraising frenzy for the Brain Tumour Research charity.
“Shawn was my tower of strength. After 33 years of being together and having spent two years planning our wedding, nothing was going to stop us getting married; not even a brain tumour. The day itself was beautiful and everything I could have dreamed of. It was such a positive occasion in light of a negative couple of years. I didn’t think about my tumour at all.”Read more
Originally diagnosed with a neurological condition which causes extreme fatigue, Elisha was told she had a brain tumour after she blacked out at the wheel of her car. With no treatment available and with an uncertain future, the 24-year-old carer is hoping to become a fashion model and to use her role as Miss Norfolk to raise awareness of the disease.
“I feel as if I have a heavy weight on my shoulders and I have gone through many different emotions. To begin with, I was angry that I had been told such devastating news yet there was no treatment. Sometimes I wonder if it would be better not to know and not to have to live with the constant anxiety and worry that every little ache or pain, every headache, might mean the tumour is growing.”Read more
A happy, intelligent and friendly child, Elizabeth was one of four children. She was just 12 when she was diagnosed with a tumour on her pituitary gland. The life-saving surgery and complications which followed left her irreparably damaged and she remained in hospital for nearly two years. Now aged 30, Elizabeth has spent most of her adult life in care.
“After Elizabeth’s surgery, we remained hopeful but realistic about her condition. We have never given up on her and, over the years, we have somehow found a way to carry on. While the pain becomes easier to bear I now have increasing worries about what will happen in say five or 10 years’ time. What if I am no longer around to ensure Elizabeth gets the care she needs?
We do our best to enjoy her better days. When Elizabeth is well she has a lovely sense of humour, a lopsided smile and a great wolf whistle!”Read more
Journalist, Ellen Beardmore, was floored when she found out she had a large tumour growing in her brain. Aged 25, she had a long life ahead of her… or did she? A 13-hour operation followed and fortunately it was a success. Despite losing her hearing in one ear, she left the hospital with a newfound appreciation for life and she hasn’t looked back since.
“A CAT scan followed and it was then that I heard the words that no one wants to hear. They’d found a big tumour in my brain. They said it had probably been growing since I was a teenager, in the background and had gone unnoticed. I desperately tried to think back and remember symptoms I might have missed or ignored; could that whooshing sound in my ear have been a warning sign?”Read more
Emily Corrigan put her headaches down to her hectic life as the mother of four young children. She got on with raising her family and put up with the pain and fatigue for two years before being diagnosed with a low-grade diffuse astrocytoma which was successfully removed during surgery. Emily was told she had a 50/50 chance of the tumour returning. In fact she has had two reoccurences and has undergone further surgery, as well as radiotherapy and chemotherapy. Emily battles with fatigue and low energy, but tries to stay positive for the sake of her children.Read more