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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It was 2006 and Sally was 40 when she first noticed something could be wrong. It was thought the mum-of-two from Stourbridge in the West Midlands could have an eating disorder after dramatic weight loss. When she began to experience sickness a few months later, a gastroenterologist referred her for a CT scan and what she thought could be a problem with her stomach, turned out to be a tumour on her brain. Sally had surgery to remove a grade 1 astrocytoma in February 2007 and is monitored with an MRI scan every two years. Since her diagnosis, Sally, now 57, is a key figure in the brain tumour community finding a love of cycling which she has used to fundraise for Brain Tumour Research.Read more
Young Jasmine from Bracknell, Berkshire, was diagnosed with a midline glioma (also known as DIPG) in February 2023. The seven-year-old began to complain of double vision and headaches in January so doting parents, Anthony and Jakki, took their only daughter to the GP. A precautionary MRI scan revealed the shocking discovery of an inoperable and cancerous mass on Jasmine’s brain. She is currently undergoing gruelling radiotherapy treatment. As the family come to terms with Jasmine’s life-limiting prognosis, they are raising awareness and funds in a hope to find a trial which can prolong their daughter’s life.Read more
At just two years old Orla Tuckwell has endured four operations and gruelling chemotherapy, after being diagnosed with a medulloblastoma. Orla, from Broxbourne in Hertfordshire, was constantly sick for weeks before the brain tumour was discovered. Biopsy results then revealed the mutation of her tumour type is so rare specialists cannot find another case anywhere in Europe. The specialists are unsure how well the NHS standard of care will treat the tumour, so her family - including mum Naomi, dad Adam, and older sisters Ava, eight, and six-year-old Poppy are now crowdfunding to raise money in case they need to access private treatment in the UK or abroad, as well as help with rehabilitation costs for Orla to help manage and overcome the severe side effects of major brain surgery and high dose chemotherapy.Read more
Charlie PudneyCharlie was just seven-years-old when he was diagnosed with an ependymoma. The tumour was successfully removed in surgery but, as there was a high chance of regrowth, Charlie and his family travelled to the States for nine weeks of Proton Beam Therapy. Now back at school and enjoying football once more, Charlie is well and undergoes regular scans. The experience has changed the life of his family forever.
“Charlie is the same little boy as he was before although, emotionally, the experience has changed us. We live for now and don’t take anything for granted. I am angry and frustrated to think that brain tumours kill more children and adults under the age of 40 than any other cancer … yet just 1% of the national spend on cancer research has been allocated to this devastating disease. This is such a complex disease and although I understand this makes diagnosis and treatment so difficult, it affects so many young people that this is precisely why more needs to be done.”
Social media account executive Charlie Sharpe, from Central London, is celebrating being cancer free following a shock brain tumour diagnosis in 2019. The 25-year-old, who grew up in Epsom, Surrey, was diagnosed with a type of germ cell tumour (GCT) called a germinoma after a Specsavers optician referred him for an MRI scan, which detected his tumour. Charlie underwent proton beam therapy, which was successful and he has now been given the all-clear, although continues to be monitored with annual scans. He is back at work part-time and has galvanised his colleagues to join him in supporting Brain Tumour Research to help support others affected by the disease.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