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.
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Anna Binks, 43, from East Yorkshire, had an MRI scan in 2010 after blood tests revealed high prolactin levels. The scan found a suspected low-grade glioma which doctors were happy to monitor with regular scans. Ten years later, the mum-of-two started suffering from headaches and dizzy spells. She had another scan which found she had a diffuse astrocytoma brain tumour. Anna’s son, Jacob, seven, has taken on Brain Tumour Research’s One Million Keepy Uppy Challenge along with his teammates at South Cave Under 8’s Blacks to help fund a cure.Read more
Matt Schlag, 44, from York, started getting regular migraines so severe they were affecting his behaviour. After concerns from his manager, Matt got an MRI scan which revealed an anaplastic astrocytoma brain tumour. Matt, dad to Reuben, two, and Anja, five, has gone through two operations, radiotherapy and chemotherapy. He’s now working with Brain Tumour Research and raised £3,000 after successfully completing the London to Brighton cycle ride in September 2022.Read more
Voiceover artist Jill Kenton had the shock of her life when, after experiencing relatively minor symptoms, she was diagnosed with a low-grade brain tumour. Facing surgery and fearing the worst, Jill faced crippling anxiety and could barely leave the house before deciding to seek another opinion and “take back control”.Read more
Since her diagnosis with a grade two oligodendroglioma, mum-of-two Charlotte Giddings has undergone three brain tumour operations and had part of her skull removed. She has had long periods when she was unable to drive and the business she ran with her husband has closed down. Despite this, she considers herself fortunate.
“In many ways I am lucky, my tumour is low-grade. I don’t want to sit around worrying about how long I’ve got left. We know that if the tumour does come back my only treatment options would be chemotherapy and radiotherapy. It seems ridiculous that brain tumours affect so many people yet just 1% of the national spend on cancer research has been allocated to this devastating disease.”Read more
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
Charlotte ReidCharlotte was just three years old when she started having bad headaches. As she grew up, the pain would last for weeks and what was initially dismissed as stress was eventually diagnosed as a brain tumour. Although “low- grade”, the treatment to combat the growth of Charlotte’s tumour has had severe impact on her life. Aged 17, she is dependent on her parents and suffers from short term memory loss and impaired vision.
“Prior to her diagnosis, Charlotte was like any other teenage girl. She was interested in fashion and make up and enjoyed pop music, particularly Adele, Little Mix and Ellie Goulding. Now, while she can cook a simple meal, she has to be reminded about getting dressed and brushing her teeth. Our world seemed to alter the most six months after Charlotte’s treatment which was a necessary evil. Her life has been turned upside down by the side effects which are huge and life-changing and I am so glad we didn’t know before about the damage it would cause.” Read more
After experiencing months of crippling migraines, sickness and balance issues sports-mad Chris was diagnosed with a brain tumour at just 15 years old as he was due to sit his mock GCSEs. Now 25 years on, Chris looks back and counts himself lucky that his tumour was low-grade and able to be removed by surgery, as many others are not so fortunate.
“When I was told I had a brain tumour and that it was the cause of all my symptoms that year, I was actually quite surprised, though my parents were obviously very upset. My initial thought was could I still play football and when could I leave to go see my friends. We were told that it was low-grade tumour, about the size of a golf ball and I would need surgery to remove it. There was and still is very little known about brain tumours and what causes them, so when the consultant said they were confident that they could get it all out, this news didn’t stop my parents from worrying about me.”Read more
Chris Brown, of Chesham in Buckinghamshire, was diagnosed with a mixed germ cell tumour (GCT) in May 2012 after an optician discovered that he had double vision and referred him for tests. He underwent a successful craniotomy but a subsequent scan revealed he had a second tumour, a pineal germinoma. The 37-year-old, whose journey was captured in the BBC Two documentary Brain Doctors, then underwent a biopsy followed by radiotherapy and Gamma Knife surgery. Now married and with a four-year-old daughter, his tumour remains stable but causes him extreme fatigue.Read more
Christine was in her fifties when she began to experience strange symptoms. She put these down to the menopause and stress at work but one night, when she was woken up by paramedics, she found herself at the start of a long and life-changing journey. She was diagnosed with a meningioma and underwent a seven-hour operation. Many ups and downs later, Christine is grateful to be alive, determined to live her life in the moment and not worry too much about the future.
“My experience taught me that you never know what’s around the corner. Within one day, my life turned upside down. I feel grateful that my tumour was low-grade, but I realise it still could have killed me. I don’t like planning ahead anymore because life can be so unpredictable. For now, I want to enjoy time with my family and live in the moment.”
Cindy, a 60-year-old grandmother thought that she was going through the menopause when she began to struggle with her balance in 2013. After numerous trips to the doctor, Cindy found out she had been living with a low-grade meningioma, that had been growing steadily over the last five years.“When the doctors came in to speak to me I thought: “If this is the menopause then I must have it really bad”. But when they said “brain tumour” I was relieved. Everything made sense.” Read more
Claire Bullimore’s brain tumour journey began in 2006, when, after several years of experiencing frequent headaches, she started suffering from debilitating migraines and blurred vision. Two years later, aged just 25, she was diagnosed with an intraventricular meningioma. Since then she has undergone brain surgery and had to give up her driving licence and her career. Claire, who is from South London, now lives with disabilities and a crippling anxiety disorder. Her story, however, is one of hope and positivity, as her life-changing diagnosis inspired her to create an online support network for other patients and survivors; a place for people to share stories and help raise awareness of brain tumours.Read more
For hairstylist Claire Messer, the last thing she could have imagined was causing her hearing loss was a large brain tumour. After being diagnosed in 2015, Claire’s meningioma was successfully treated with gamma knife radiotherapy and now she is eagerly awaiting the birth of her first grandchild. She has also fundraised with her husband, Rod, and two daughters, Chloe and Celine, raising over £4,000 for the Brain Tumour Research charity.
“I was in utter disbelief. I shed tears out of anger and thought ‘I’m too young for this’. My diagnosis was a short, sharp shock that made me think about my own mortality. It was the moment I realised I wasn’t indestructible. I’m so grateful to have had such excellent treatment and because of this I’m determined to help others in a similar situation.”Read more