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
When Charlotte Hughes, from York, started suffering from leg cramps and numbness in 2015, she never expected her symptoms would be related to brain cancer. Nearly a year after her symptoms began, Charlotte, a 43-year-old recruitment consultant, was diagnosed with two gliomas on the motor strip in her brain. Charlotte has since undergone three brain surgeries, the most recent being an awake craniotomy, during which she watched the Netflix period drama, Bridgerton, on her iPad! Charlotte is extremely grateful to the surgeon, oncologist and nurses who have helped her through her illness so far and she remains positive about the future.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
Owen Copland from Liverpool, Merseyside, was diagnosed with an aggressive brain tumour in November 2020. The 20-year-old drama student has since undergone surgery and radiotherapy to treat the disease but devastatingly, his latest scan results revealed significant progression and his family has been told his prognosis is extremely stark.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
Andrew was just 27 when he was diagnosed with a high-grade anaplastic astrocytoma brain tumour. He underwent surgery and began chemotherapy but after four months he stopped the treatment and made significant changes to his diet. Five years on and Andrew has had no tumour growth, and is continuing to follow a restricted Palaeolithic ketogenic diet. His quality of life has drastically improved and he is dedicating his studies to research into the disease.
“Research into brain tumours is the only hope. We need more studies and clinical data, but in the meantime, I will continue to use myself as a human guinea pig. I know my cancer could come back at any time but if we understand more from a metabolic standpoint, then brain tumours can potentially become a condition we live with, rather than a disease we die from. It’s my passion and my dream and I desperately want to help others and help to shape the future in a positive way”Read more
Andy Shipsey was diagnosed with an acoustic neuroma five years ago. Since then, he’s had to adapt to a new norm. Once a keen footballer, runner and cyclist, his tumour caused irreversible deafness and vertigo, meaning he can no longer enjoy the sports he loved. Andy, 37, works in finance for University Hospitals Plymouth NHS Trust and lives in Plympton with his partner Ruth, 49, and her son Ben, 23, who recently completed a 10k run for Brain Tumour Research.Read more
Ann BrownMam-of-two Ann Brown had experienced a range of unusual symptoms for 16 years but it wasn’t until her life slowed down during the COVID-19 UK lockdown, that she noticed just how bad those symptoms had become. In May 2020, she was finally diagnosed with a meningioma brain tumour. She underwent a craniotomy, followed by a six-week course of radiotherapy treatment. Ann, 41, is now medically retired. As she reflects on a truly life-changing year, she is focusing on her family, as well as turning her attention to fundraising, to help find a cure for brain tumours. Read more
Ann SwaddenAnn was 24 and had been married to Alan for less than a year when she was diagnosed with a brain tumour. In March, National Brain Tumour Awareness month, she will undergo a craniotomy procedure to remove the low-grade glioma. She opted to have surgery rather than “watch and wait” as she wants to be free of the tumour when she moves into her new home and looks forward to starting a family.
“I was given a choice: watch and wait or have surgery to remove the tumour. I have opted to have the operation on the basis that I am fit and healthy and have been advised I can expect to recover well. Without doubt, this is a really big thing but I know that there will be people around me whose job it is to make sure I don’t die and that I maintain a good quality of life. If anything, I am more apprehensive about the recovery than the operation itself. I know that I will need some form of speech therapy although my surgeon did joke that I was really good at talking so he didn’t think that would be a big problem!” Read more
Five years after her brain tumour diagnosis, Anna is at a crossroads. Until now, she has declined any intervention or conventional treatment preferring instead to trust her own instinct and to “watch and wait.” But, with her latest scan revealing growth, albeit minimal, she has an important decision to make.
“Physically I’m in good shape and strive to live my life to the full but there is a cloud of uncertainty above my head. I know that somewhere down the line I will have to take action but no-one can tell me with confidence when the right time is and what that action should be. It is a frustrating time but I am hopeful. In many ways I am grateful to my brain tumour, it has made me realise what the most important things in life are. It has given me direction and a focus. After all, it is going to be with me for the rest of my life and so I had better make the most of it.”Read more