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
Hilary Kingsley, 77, from Wimbledon, was diagnosed with a brain tumour in 2016 after experiencing symptoms which were initially put down to low blood pressure. She underwent surgery, followed by radiotherapy and now lives with the effects of her treatment. She is sharing her story of hope to show that there can be life after a brain tumour diagnosis.Read more
Freelance marine consultant and Master Mariner Paul Potter, from Pembrokeshire in Wales, was diagnosed with a brain tumour in 2012, when he was about to have treatment for prostate cancer. The low-grade meningioma wasn’t related to his cancer but it needed to be dealt with quickly, so his prostate treatment was put on hold while he underwent a craniotomy to remove the brain tumour. A keen cyclist, 65-year-old Paul is now fully recovered and is fundraising to help find a cure for the disease, with a cycling challenge he hopes will also spark conversations about brain tumours.Read more
It took four months of headaches gradually getting worse before Catherine was finally diagnosed. One day she had such blinding pain on the left side of her head that her husband called an ambulance and she was taken to A&E. Catherine was given a CT scan, leading to the discovery that she had a brain tumour, which later turned out to be a glioblastoma multiforme (GBM).
Registered nurse and mother-of-one Anne Murdy was diagnosed with a meningioma brain tumour in March 2020. The diagnosis came after several months of Anne going back and forth to her GP with a range of unusual symptoms, include urinary issues, changes to her voice, problems swallowing and increasing unsteadiness. The symptoms were initially thought to be related to the menopause but months later, when she was finally sent for an MRI scan, doctors found a golf-ball sized tumour in her brain.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 Lindon was diagnosed with an inoperable aggressive oligodendroglioma brain tumour on March 11, 2008, a week before his 29th birthday. He underwent radiotherapy treatment and 120 cycles of chemotherapy – thought to be a record for a UK patient. Amazingly, having been told that all his treatment would render him infertile, he went on to father two miracle children, Martha and Sid.Read more
When Beth Parker, 27, from Liverpool, went into surgery to remove a brainstem tumour, she was told there was a 20% chance she wouldn’t survive. If she did survive, there was a long list of potentially life-changing risks. Thankfully, the operation was a success and she is on the road to recovery after her ordeal. Beth’s diagnosis with a low-grade haemangioblastoma came after years of trying to convince doctors that her symptoms were real and not ‘just a migraine’. She is now keen to share her story and is fundraising for Brain Tumour Research, to help others facing this devastating diagnosis.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
Beverley had always been healthy and active until she suddenly started having excruciating headaches and vomiting. She was eventually diagnosed with a low-grade haemangioblastoma and underwent surgery which, happily, was successful in removing the tumour. Now, 10 years on, she feels it is as if the experience never happened.
“I am so thankful I was lucky enough to have the type of brain tumour I had, but I am very conscious that the prognosis for the vast majority of brain tumour patients is not nearly so rosy. I am sharing my story to help raise awareness because I know that much more research needs to happen to find a cure.”Read more
Bob shared his story with us in September 2016. Sadly, he passed away on 25th June 2019. We will remember Bob as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.
A successful double bass player, Bob Picken has been a member of Liverpool band Ella Guru, as well as a backing for artists such as Neville Skelly, She Drew The Gun, Bill Ryder-Jones and Marvin Powell.
Diagnosed in 2012 with an anaplastic astrocytoma, whom he affectionately calls “Bieber” in reference to the Canadian singer Justin, Bob has managed to overcome a number of setbacks to carry on with his career, and in his own words “stick two fingers up to cancer”.
“You go through five stages of cancer: denial, anger, bargaining, sadness and eventually acceptance.”