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
Alex Mussard thought the ongoing hearing loss he was experiencing in his right ear was probably caused by listening to music too loudly through his headphones. Three years after his symptoms first appeared and following several misdiagnoses, the 27-year-old was finally diagnosed with an acoustic neuroma brain tumour. Describing himself in his Twitter bio as an ‘acoustic neuroma warrior’, Alex is now seven months post-surgery, back to his full-time job in finance and counting his blessings after his life-changing experience.Read more
Lyra was just five months old when she underwent emergency surgery to remove her tumour, a low-grade choroid plexus papilloma. Initially misdiagnosed as a virus, her symptoms had included a loss of appetite and vomiting. Now six, Lyra has released a cover of Christmas classic When A Child is Born, with funds being donated to the charity Brain Tumour Research.Read more
Laura was just 21 when she was diagnosed with a low-grade brain tumour. The swimming instructor and keen horse rider had suffered from debilitating symptoms for more than two years, including migraines, sickness, and psychosis, which were misdiagnosed as a mental illness. A year on from her diagnosis, she is still adjusting to life as a brain tumour patient. She’s at a crossroads as she decides whether to have further treatment. Her plans of moving into her own home and thinking about a family have been thrown into the air.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 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
April WatkinsApril was diagnosed with a grade IV medulloblastoma in 2010 during her first year at university after suffering with debilitating headaches. Her mother had recently been diagnosed with lung cancer and tragically passed away while April was receiving treatment following her brain surgery. She has since been given the all clear. Read more
Beatrice WilliamsGrandma-of-four Beatrice, an artist, was 30 years old when she was first diagnosed with an acoustic neuroma brain tumour, which was removed by surgery. She thought she had seen the back of the disease when, in 2014, an examination following a minor head injury showed that her tumour had recurred. While recovering, Beatrice learnt to paint and now, having recently celebrated her 50th wedding anniversary, she is sharing her story to bring hope to patients and families. Read more
Ben AndersonFourteen-year-old Young Scout Leader Ben Anderson went to the optician for a check up at the end of the summer holidays. Within hours he was referred to hospital and a scan revealed he had a brain tumour. Immediate action was required and Ben underwent surgery. He recovered well but needed further treatment, this time in the US, to halt the growth of his tumour. Despite the gruelling treatment and disruption caused to his schooling, Ben did well in his GCSEs and is now studying for a career which he hopes will see him working with children with special needs.
“My world had been turned upside town. I had walked into the opticians with a child who seemed perfectly healthy and was just days away from going into year 10 to start his GCSE courses. Less than 24 hours later my son was diagnosed with a brain tumour and needed life-saving surgery. I was 29 weeks pregnant. When Ben turned to me and said: ‘I really want to be here to meet my new baby brother or sister. Am I going to die mum?’ I told him no, he wasn’t going to die and we would do whatever was needed.” Read more
Ben LindonBen was diagnosed with an inoperable grade 2 glioblastoma brain tumour on March 11, 2008, a week before his 29th birthday. He underwent radiotherapy treatment and continues to receive chemotherapy, having endured 54 cycles of temozolamide to date. Amazingly, having been told that all his treatment would render him infertile, in September 2012, Ben fathered a miracle baby girl, Martha Rose. Even more amazingly, his wife, Kate, gave birth to their baby son, Sidney George, in June 2014, despite Ben having endured more than 60 cycles of chemotherapy by then.
“I hope to use what is a very difficult and life-threatening experience for me to raise awareness and funding for research into brain tumours. If I can raise just a small amount of money and boost people's understanding of what is a very little-known-about disease, not to mention a terrifyingly complex issue, then my experiences will not be wasted and maybe other people suffering will see that all is not lost.” Read more
Bethany was just nine when an apparent minor allergy to oranges preceded her shock brain tumour diagnosis. Her Mum, Trish, saw her little girl happily dancing around the kitchen to One Direction before screaming out that her head was on fire and collapsing. Despite the years of surgery, hospital appointments and medications that followed, Bethany is now a bright and positive fourteen-year-old, eager to live her life to the full while knowing that her condition will be life-long.
“There’s a lot that I don’t completely understand, some things that I don’t even remember, but I still have to cope with it all anyway. The tumour doesn’t care if I understand or not.”Read more