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
Programme & partnerships manager, 27-year-old Rose Acton lives in Finsbury Park in North London with her boyfriend Tom. In August 2019, the King’s College London History graduate was diagnosed with an inoperable, grade 4 glioblastoma (GBM), she refers to as ‘Bobby’.
Rose, who grew up in Manchester, made the decision to blog about her brain tumour journey on the day she received her devastating diagnosis. Determined to throw everything at it to ensure ‘Bobby’ is ‘going down’, Rose has just embarked on a six-week course of intensive treatment to try to shrink the tumour.
For first-time parents Stephanie Day and James Devlin, it was devastating to be told their new-born baby George had a brain tumour. ‘Gorgeous George’ underwent a nine-hour craniotomy when he was just 10 weeks old and is now a healthy and happy little boy. His mum Stephanie, 27, who was shocked that someone so young could be diagnosed with such a serious condition, is keen to raise awareness of the disease.Read more
Kent-based radio producer Duncan Wallace, originally from Newcastle-upon-Tyne, is happily married with two young children, a great circle of friends and a successful and exciting career in the music industry. But life was turned upside down for Duncan in April 2019 when he was diagnosed with an inoperable, high-grade brain tumour. Having recently undergone his first course of radiotherapy and chemotherapy, Duncan remains positive in spite of his prognosis and is training to run a half marathon; the Great North Run.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 CorriganEmily 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 glioma which was successfully removed during surgery. Emily recovered in time to see her second child start school but suffered from depression as she came to terms with what had happened. In February 2016, she posted a photograph on Facebook showing the scar across her head and her appeal for people to sign an e-petition calling for more government investment into researching brain tumours was shared more than 18,000 times.
“It breaks my heart to think of mum holding me that night when I nearly died. No parent should ever have to bury their child and I worry about the unthinkable happening to any of my kids. Brain tumours kill more children and adults under the age of 40 than any other cancer yet just 1% of the national spend on cancer research has been allocated to this area. It was a big decision for me to post a photograph on Facebook showing the scar from my surgery. I did it to provoke a reaction and am proud to think it contributed to prompting a House of Commons debate on the under-funding of research into this devastating disease.” 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
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
Flora had just started studying for A-levels when she began to experience strange feelings of nausea, hot flushes and partial seizures. She was finally diagnosed with a low-grade brain tumour in February 2016 and underwent surgery because of worsening epilepsy. Despite suffering from post-operative depression, she gained a university place to study chemical engineering. Now, two years since her surgery, she feels extremely lucky and is determined to change misconceptions about brain tumours amongst her peers.
“Looking back at my experience, I often realise how lucky I am. I’m fortunate that it all went well and I’m living more or less normally. The situation forced me to grow up and mature more quickly and I now understand the value of life. I can see how fragile and unpredictable it can be and I’m definitely more positive. Small issues that used to get to me don’t really matter now in the grand scheme of things.”Read more
In August 2016, Wenna and Franco Pietrantonio were getting over a turbulent year. After the premature birth of their twin girls, who were in and out of hospital for their first year with various health complications, they faced another battle. In October, Franco was diagnosed with a large, presumed low-grade glioma after suffering a seizure in August. The father-of-three endured brain surgery to remove his tumour just a few days before Christmas which, thankfully, has since shown no re-growth. Now he requires yearly MRI scans and he and Wenna live with a new sense of vulnerability, knowing full well that life can turn upside down in an instant.
“Over the phone, the consultant said that Franco had a large tumour, presumed to be a low-grade glioma. To us, this was of little significance; we didn’t understand the diagnosis but instantly thought it would kill him. The diagnosis was a complete bombshell and it was awful. We tried to be strong and put on a brave face but personally, I felt very alone. Suddenly, I was on my own, looking after my family, and it was up to me to keep it together.”Read more