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
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
Matt was diagnosed with a rare subependymoma brain tumour seven years after first being diagnosed with vertigo. He underwent surgery to remove the tumour in 2018 but has been left with life-changing effects, including 50% blindness, fatigue and memory problems. Being the local postman has been his saving grace.Read more
Radiotherapy graduate Kaite’s surgery to remove an acoustic neuroma brain tumour was delayed because of lockdown. Ahead of the operation this autumn, Katie is preparing herself physically and mentally by taking on a series of daily Walks of Hope to raise money for the charity Brain Tumour Research.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
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.”
Yardley schoolboy Bobby Humphries was two years old when he was diagnosed with a large brain tumour. He underwent life-threatening surgery and chemotherapy when just a toddler. Sadly, Bobby’s tumour recurred and he had to go through another 18 months of chemotherapy. Now six, Bobby, a keen Birmingham City Football Club fan, has recently started the new school year and his parents Georgina and Aaron are taking each day as it comes.Read more
Bradley was diagnosed with an inoperable brain tumour at the age of three and underwent radiotherapy. Apart from headaches, his life continued as normal until he was 18 and had to be flown home by air ambulance while on holiday for a surgical procedure to help relieve pressure building up in his head. Then at the age of 23, following a massive seizure, he had a 10-hour operation to attempt to remove the ‘inoperable’ brain tumour. Miraculously, the neuro-surgeons succeeded in removing 95% of the tumour. In the years since his surgery, Bradley has worked hard on his rehabilitaton and now, aged 29, can walk almost perfectly, although he is waiting to have Botox to help regain movement in his right hand.
“My neuro-consultant was becoming very concerned, but he still didn’t want to take the risk of trying to remove the tumour, due to its dangerous position and the risks of life-changing consequences. However, one day I had a massive seizure and the doctors were unable to bring me round. The pressure had built up to a dangerously high level which meant there was no option than to operate to relieve the pressure as quickly as possible. I had the emergency procedure and was taken to the High Dependency Unit and put into a coma. Meanwhile, my parents were told that it was now imperative to attempt to remove the ‘inoperable’ tumour once the pressure in my head had been reduced and I had returned to a stable condition.”Read more
After suffering a seizure at his home in Milton Keynes, 54-year-old Brian Carrick underwent surgery to remove a grade two oligodendroglioma, which had been growing unnoticed for at least 10 years. Brian feels tremendously lucky it was discovered at a point where he could benefit from new research and before it became cancerous. Brian is currently undergoing a six-week course of radiotherapy followed by chemotherapy to try and remove a small amount of tumour that was left after surgery.
“I dread to think what could have happened if Emma hadn’t been home that day, or if I was driving at the time of the seizure. I’m very lucky that I’m here and able to tell my story, unlike so many others that have been struck by such a devastating disease like cancer.”Read more
Soldier Cameron Ray agreed to his brain surgery being filmed for a BBC documentary because he wanted to raise awareness of the disease and to help reassure others who were coping with the same diagnosis. He hopes to get back to full fitness, complete his training as a medic and resume his career serving his country in the British Army.Read more
Carly Beasley had landed her dream job and had recently married her childhood sweetheart, Kris, when she had her first seizure. Following a series of tests and scans, she was diagnosed with a low-grade brain tumour in October 2017 and had surgery to remove the tumour three months later. Having made a remarkably quick recovery from the operation, Carly is now back at work and determined to use her experience to help others.
“With anything that people go through, not just brain tumours, you go through a mix of emotions. I have had anxiety about my illness and have gone through the inevitable ups-and-downs, but there are many positives I can take from my situation. At least my tumour is low-grade. At least I made a full recovery.”Read more