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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Jim started to experience symptoms after the UK went into lockdown during the coronavirus pandemic. He was staggered to be told that - like his wife 18 years previously, whom he has cared for ever since - he had a brain tumour. Despite the burden placed on the NHS as a result of Covid-19, Jim was diagnosed, underwent surgery and started treatment within weeks. He is sharing his story of optimism to bring hope to others.
Catrin IrelandNumber 13 definitely turned out to be unlucky for me – I was diagnosed with a meningioma brain tumour on our 13th wedding anniversary. Surgery left me with vision and balance issues – I feel very dizzy walking any distance and suffer with extreme fatigue which means I regularly find myself needing to sleep during the day. Obviously, I had to give up my driving licence. I now get around on a mobility scooter which isn’t what I ever imagined I would be doing aged 41 as I am now.
“It seemed completely surreal when I heard the words ‘brain tumour’ as that thought hadn’t even entered my head. I found myself pacing the corridors of the hospital, crying and swearing (which isn’t like me), while my husband kept trying to hug me. The date was the 23rd May – a day I will always remember because we should have been celebrating our 13th Wedding Anniversary!” Read more
Charlie CoxCharlie Cox, from Morden, was just eight months old when he was diagnosed with a brain tumour. Now a bouncy, fun-loving eight-year-old, his tumour has recurred three times. He has faced countless hospital appointments, operations and chemotherapy throughout his childhood but his mum Kirsty, 32, is desperate to keep life for Charlie and his brother Freddie, four, as normal as possible. 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.”
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
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
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