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
Mother-of-two Sharon Jones, from Colwyn Bay in North Wales, was diagnosed with a low-grade brain tumour in March 2021. Her diagnosis came four years after she first started suffering from symptoms, which were initially put down to migraines. She finally discovered she had a meningioma after an optician referred her for an MRI scan. Sharon’s tumour is operable but due to the COVID-19 pandemic, surgery to remove it has been delayed and she is currently on a ‘watch and wait’ until her next scan in August 2022.Read more
Grandfather-of-six Bill Smith, from Sheffield, was diagnosed with a brain tumour in April 2021. Having overcome bowel cancer three years prior to his diagnosis, the retired induction hardener initially feared the tumour was high-grade. Luckily, Bill’s tumour was a low-grade meningioma unrelated to his previous cancer. Surgeons were able to remove the tumour during a three-hour operation. He has bounced back to good health and his post-operative scans remain clear.Read more
Father-of-two Greg Priddy was diagnosed with a brain tumour in November 2020. On Christmas Eve he found out it was cancerous and on New Year’s Eve he received the shocking news he had an inoperable primary brain CNS lymphoma (PCNSL). In January he started undergoing chemotherapy, although his start date was delayed due to the COVID-19 crisis, and then at the beginning of July he had a stem cell transplant. The 45-year-old now has an anxious wait to find out if his treatment has worked, during which time he has started taking part in a clinical trial at London’s Royal Marsden Hospital, which is conducting research into the effectiveness of COVID-19 vaccines on cancer patients.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
Emily JonesEmily, a PhD student at Oxford University, was studying for a master’s degree at Exeter College in 2011 when she started to feel unwell. It was a year later when she was finally diagnosed with a malignant ependymoma brain tumour, having taken matters into her own hands and financed a private consultation that she could ill afford. Her journey of diagnosis and treatment, which has included extensive radiotherapy, has demonstrated some disparities in approaches to treatments in the UK for her condition. Read more
The youngest of four children (big brother Jordan is 16, Lillie, eight, and Sienna, five) Esmé, now three, was diagnosed with a rare high-grade form of ependymoma whilst still just one year old. GPs had previously diagnosed a sickness bug or urinary tract infection. Esmé underwent major surgery and completed a gruelling 19 months of chemotherapy.Read more
Faith SpeakesAged 26, Faith Speakes’ life was on the way up. She was looking forward to marrying her fiancé Luke and starting a family soon after, but things were thrown off track when she was diagnosed with a brain tumour. Just weeks after walking down the aisle, Faith was in theatre to have a meningioma removed and a few months later she was found to have a second tumour. Despite it all, she is excited for what’s to come and feels her life has changed for the better. Read more
Two-year-old Finlay was finally diagnosed with a high-grade brain tumour after his mother repeatedly pestered health professionals saying she knew something was wrong with her son. He underwent surgery and is currently on chemotherapy. Finlay is doing well and his parents are trying to stay positive although they have been told that just 20% of patients survive beyond five years.
“I need to stay positive for Finlay, he is not a statistic, he is my son. Finlay is the most loving little boy and a true inspiration to us and everyone who meets him. He is our little soldier and continues to amaze us every day with his bravery and strength. It’s easy to sit back and think something like this won’t happen to you but it does, I am living proof of that, it has happened to our little boy. For this reason we all really do need to raise more funds and awareness to help fund the fight against brain tumours for all those amazing people, like Finlay, who are fighting. Hopefully, one day we will find a cure.”Read more