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
Private dental hygienist Emma Taylor was 34-weeks weeks pregnant when she was rushed into hospital suffering from a catastrophic brain bleed. It was later revealed this had been caused by a brain tumour growing at the base of her skull. The 33-year-old, of Chelmsford, Essex, was put in an induced coma before giving birth to her baby by emergency caesarean. She remained unconscious for weeks and is still unable to talk but communicates using head and hand movements, as well as via a computerised device. To progress her recovery, her partner has set up a GoFundMe page to help fund a bespoke rehabilitation programme.Read more
Operations director Simon Penwright was diagnosed with a multifocal glioblastoma (GBM) after waking with a severe headache and a foul but inexplicable taste and smell in January. The 52-year-old, who works for a manufacturing machinery company and lives in Stewkley, Buckinghamshire, has been given a prognosis of just 12 months. He underwent surgery in February followed by three weeks of high dose radiotherapy and chemotherapy. He is currently undergoing further chemo, having just completed his second round of temozolomide.Read more
Archie Siddall, 24, from Eckington in Derbyshire, started becoming forgetful in September 2022. His GP said it was because of stress but then Archie started getting severe headaches. After going to Accident and Emergency he was told he had a migraine but a second visit, which included a CT scan, revealed he had a glioblastoma (GBM) brain tumour. Part of the tumour was removed during surgery, and Archie completed six weeks of radiotherapy and chemotherapy in January; he is now on six cycles of tablet-form chemotherapy. Archie’s mum, Anne Siddall, is taking on the Jog 26.2 Miles in May Challenge to raise money for Brain Tumour Research.
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
Ten-year-old Elsie Pyner, from Newport Pagnell in Milton Keynes, Buckinghamshire, was diagnosed with a grade 4 medulloblastoma in March 2015 at the age of two. She underwent emergency brain surgery followed by five months of intensive chemotherapy, a second resection, high-dose chemotherapy and a stem cell transplant. She now requires the use of hearing aids and has posterior fossa syndrome, selective mutism and a processing delay. In March 2020, a routine MRI discovered that she had a second unrelated tumour, a low-grade juvenile pilocytic astrocytoma (JPA). Initially thought to be a relapse of her first tumour, Elsie’s parents were told to prepare for life-prolonging rather than life-saving treatment. The youngster underwent two further surgeries and is now being monitored with six-monthly scans.