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
Rosie WilsonJust a couple of months after her wedding, Rosie, then a 31-year-old children’s nanny, was told she had an aggressive and incurable brain tumour. She was given a survival prognosis of 12 to 15 months, but puts her long-term survival with a glioblastoma multiforme down to taking part in some observational research of repurposed drugs at the private Care Oncology Clinic in London. Read more
Lynne Collins, 61, is undergoing her fifth round of chemotherapy to treat her glioblastoma multiforme (GBM) – the most aggressive form of brain cancer. She has already endured surgery and now faces the difficult decision of whether to undergo radiotherapy which could leave her blind. As a former advanced nurse practitioner, she is under no illusion of how uncertain her future is.Read more
Just three weeks after starting her new job, Kirsty Barton, 28, was diagnosed with a brain tumour. The mum-of-two endured surgery in May 2019 which removed most of the tumour and now she is doing well. Kirsty’s diagnosis made her realise how precious life can be and she hopes that other patients will be inspired by her story.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 ButtonClaire was diagnosed with a brain tumour in 2008 after she was taken ill Camp Bastion, Afghanistan, and immediately evacuated back to the UK. Claire lives with her husband Phil and their daughter Ellen. 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
Claire WhittleClaire, a French teacher at Stanton School in Milton Keynes, was diagnosed with a grade 2/3 astrocytoma in 2011, aged 51. She made a decision at the time that she wouldn’t be a victim and that she would live to be a grandmother. Nearly five years on she feels so blessed to still be here.
“I was given the news by a hard-nosed clinical nurse specialist because my neurosurgeon was called away on an emergency. She walked in with a big white envelope and bluntly stated: “I know all about it. There is no cure… but the good news is that you can have a bus pass.”
After suffering seizures, former soldier Dan Mason, 33, was diagnosed with a pleomorphic xanthoastrocytoma – a very rare and incurable type of brain tumour. He was forced to quit the job he loved and lost his driving licence, yet still faced his diagnosis with positivity. A tattoo across his chest, which translates to ‘think positive, be strong’, reminds Dan to live in the moment, despite the pressure his illness places on him, his wife Roz and his children Caleb, 10, and Daisy, two.
“Emotionally, things were tough. I remember standing outside the hospital, in my army uniform, crying. My friends and family members didn’t know how to react or how to comfort me and that was really hard to deal with.”Read more
Daniel BurridgeDaniel is the youngest of three children with an older brother and sister. In his last year at Dr Challoner’s Grammar School in Amersham, Daniel is studying for A’ Levels in Further Maths, Physics and Geography, having already taken Maths last year. He is applying to university to study Mechanical Engineering and hopes to get a place at Imperial or Bath.
Aged 17, Daniel was just 5ft, 5in tall, despite his Dad being 6ft 4in. Investigations led to him being diagnosed with a tumour on his pituitary gland, which fortunately turned out to be benign.
“Mum found the six-week wait to learn whether the tumour was benign or malignant much more worrying than me. It really affected her, especially as, unbeknown to me, she went online and looked up pituitary gland tumours and discovered that in 20 per cent of cases they are malignant. I was more worried about whether I was going to be able to continue boxing, which I had enjoyed so much for the past five years.” Read more
Danielle Louise Gould
After experiencing months of painful headaches and issues with her balance, flight attendant, Danielle Louise Gould was diagnosed with a cerebellar hemangioblastoma brain tumour in 2012. Though her tumour was categorised as low-grade and not aggressive, Danielle still had to undergo 8 surgeries to remove the tumour and control the fluid build-up on her brain. With the support of her family, boyfriend and twin sister Cherise, Danielle rebuilt her life after the tumour and remains determined to continue working on her bucket list of goals with her sister before they turn 30 next year.
“I was taken to the John Radcliffe Hospital in Oxford, where an MRI scan revealed the nature of my tumour. It showed I had a tumour the size of a pea called a cerebellar hemangioblastoma in the centre of my brain, surrounded by a layer of fluid. This build-up of fluid, the size of an egg, was pushing on the cerebellum, which is the part of my brain that controls balance, movement and coordination.”Read more
Darcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. She was still undergoing chemotherapy when her mother, Debbie was diagnosed with incurable cancer.
“Less than a year after Darcyana was diagnosed with a brain tumour, I found a lump in my breast…. I underwent a bone marrow biopsy which revealed that I had secondary breast cancer which had already spread to my bones. I didn’t think lightning could strike twice.”Read more
Dave HoldenFather-of-three Dave Holden is living with a grade 3 astrocytoma brain tumour. It was diagnosed in 2010 after he began to experience difficulty driving. The tumour responded well to 18 months of chemotherapy and radiation but a scan in March 2015 revealed it had returned. Dave continues to work full-time and remains positive about the future.
“I can’t be bothered with the doom and gloom. I have always been quite a positive person and now it is more important than ever. I do have days where I can feel down, but my wife gives me a kick to help me get over it. We have the kids to think about and I need to be here and on good form for as long as I can in order to look after my family.” Read more
David RickfordDavid was 28 when he was diagnosed with a brain tumour, having already recovered from Hodgkins Lymphoma. As his mother, I have really felt the utter helplessness of the situation and now want to do something to help others if I can. Read more
David has undergone surgery, radiotherapy and chemotherapy since being diagosed with a grade three anaplastic oligodendroglioma in July 2017. His tumour has caused a large social and economic burden as well as the psychological difficulties to not knowing what the future for him, his wife and their son, will bring.“It is difficult to convey just how much our lives have been changed by my diagnosis. I haven’t been given a prognosis as such, perhaps the doctors are scared to tell me. No-one knows how long I have had the tumour and, just now, I don’t know if I’ll be here for another four or five years or whether I’ve got as little as two months. It’s ironic to think that prior to my diagnosis I had stopped drinking, I’ve never smoked and have always been fit. It is hard to understand how this could happen to someone like me and not knowing what the future will bring is by far the hardest thing.” Read more
Mechanic Debs Clarke suffered years of crippling back pain prior to being diagnosed with a grade two hemangiopericytoma (HPC) brain tumour in February 2017 at the age of 43. Despite being house bound and coming to terms with maybe not returning to the job she loved, her strong faith has allowed her to remain positive and thankful for every day. Though her tumour is rare, she has been told there is a small chance her sisters could carry the genes, and is now focused on ensuring her sisters are tested for the disease.
“When a nurse looked at me funny after having my CT, I had a bad feeling about the results as she looked really worried. I called my best friend Mel panicking and said “I have a brain tumour”, to which she told me to stop being silly, as it was “likely to be nothing serious as brain tumours are really rare”. My suspicions were confirmed when the doctor called me the following Monday.”
When Elaine Lee-Tubby, 47, was diagnosed with a brain tumour, she was taken back to the dark days of losing her dad to the disease just three years before. Now, 20 months on from her own diagnosis, she is determined to prove that living with a low-grade meningioma doesn’t stop her from leading a happy life. Having married her childhood sweetheart Shawn last August, she’s looking forward to a relaxed Christmas with her husband and their four daughters, Emma, 31, Carla, 26, Symone, 22, and Leah, 13, and will soon take on a festive fundraising frenzy for the Brain Tumour Research charity.
“Shawn was my tower of strength. After 33 years of being together and having spent two years planning our wedding, nothing was going to stop us getting married; not even a brain tumour. The day itself was beautiful and everything I could have dreamed of. It was such a positive occasion in light of a negative couple of years. I didn’t think about my tumour at all.”Read more
Originally diagnosed with a neurological condition which causes extreme fatigue, Elisha was told she had a brain tumour after she blacked out at the wheel of her car. With no treatment available and with an uncertain future, the 24-year-old carer is hoping to become a fashion model and to use her role as Miss Norfolk to raise awareness of the disease.
“I feel as if I have a heavy weight on my shoulders and I have gone through many different emotions. To begin with, I was angry that I had been told such devastating news yet there was no treatment. Sometimes I wonder if it would be better not to know and not to have to live with the constant anxiety and worry that every little ache or pain, every headache, might mean the tumour is growing.”Read more
A happy, intelligent and friendly child, Elizabeth was one of four children. She was just 12 when she was diagnosed with a tumour on her pituitary gland. The life-saving surgery and complications which followed left her irreparably damaged and she remained in hospital for nearly two years. Now aged 30, Elizabeth has spent most of her adult life in care.
“After Elizabeth’s surgery, we remained hopeful but realistic about her condition. We have never given up on her and, over the years, we have somehow found a way to carry on. While the pain becomes easier to bear I now have increasing worries about what will happen in say five or 10 years’ time. What if I am no longer around to ensure Elizabeth gets the care she needs?
We do our best to enjoy her better days. When Elizabeth is well she has a lovely sense of humour, a lopsided smile and a great wolf whistle!”Read more
Journalist, Ellen Beardmore, was floored when she found out she had a large tumour growing in her brain. Aged 25, she had a long life ahead of her… or did she? A 13-hour operation followed and fortunately it was a success. Despite losing her hearing in one ear, she left the hospital with a newfound appreciation for life and she hasn’t looked back since.
“A CAT scan followed and it was then that I heard the words that no one wants to hear. They’d found a big tumour in my brain. They said it had probably been growing since I was a teenager, in the background and had gone unnoticed. I desperately tried to think back and remember symptoms I might have missed or ignored; could that whooshing sound in my ear have been a warning sign?”Read more
Emily CorriganEmily Corrigan put her headaches down to her hectic life as the mother of four young children. She got on with raising her family and put up with the pain and fatigue for two years before being diagnosed with a low-grade glioma which was successfully removed during surgery. Emily recovered in time to see her second child start school but suffered from depression as she came to terms with what had happened. In February 2016, she posted a photograph on Facebook showing the scar across her head and her appeal for people to sign an e-petition calling for more government investment into researching brain tumours was shared more than 18,000 times.
“It breaks my heart to think of mum holding me that night when I nearly died. No parent should ever have to bury their child and I worry about the unthinkable happening to any of my kids. 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 area. It was a big decision for me to post a photograph on Facebook showing the scar from my surgery. I did it to provoke a reaction and am proud to think it contributed to prompting a House of Commons debate on the under-funding of research into this devastating disease.” Read more
Emily JonesEmily, a PhD student at Oxford University, was studying for a master’s degree at Exeter College in 2011 when she started to feel unwell. It was a year later when she was finally diagnosed with a malignant ependymoma brain tumour, having taken matters into her own hands and financed a private consultation that she could ill afford. Her journey of diagnosis and treatment, which has included extensive radiotherapy, has demonstrated some disparities in approaches to treatments in the UK for her condition. Read more
Faith SpeakesAged 26, Faith Speakes’ life was on the way up. She was looking forward to marrying her fiancé Luke and starting a family soon after, but things were thrown off track when she was diagnosed with a brain tumour. Just weeks after walking down the aisle, Faith was in theatre to have a meningioma removed and a few months later she was found to have a second tumour. Despite it all, she is excited for what’s to come and feels her life has changed for the better. Read more
Two-year-old Finlay was finally diagnosed with a high-grade brain tumour after his mother repeatedly pestered health professionals saying she knew something was wrong with her son. He underwent surgery and is currently on chemotherapy. Finlay is doing well and his parents are trying to stay positive although they have been told that just 20% of patients survive beyond five years.
“I need to stay positive for Finlay, he is not a statistic, he is my son. Finlay is the most loving little boy and a true inspiration to us and everyone who meets him. He is our little soldier and continues to amaze us every day with his bravery and strength. It’s easy to sit back and think something like this won’t happen to you but it does, I am living proof of that, it has happened to our little boy. For this reason we all really do need to raise more funds and awareness to help fund the fight against brain tumours for all those amazing people, like Finlay, who are fighting. Hopefully, one day we will find a cure.”Read more
Flora had just started studying for A-levels when she began to experience strange feelings of nausea, hot flushes and partial seizures. She was finally diagnosed with a low-grade brain tumour in February 2016 and underwent surgery because of worsening epilepsy. Despite suffering from post-operative depression, she gained a university place to study chemical engineering. Now, two years since her surgery, she feels extremely lucky and is determined to change misconceptions about brain tumours amongst her peers.
“Looking back at my experience, I often realise how lucky I am. I’m fortunate that it all went well and I’m living more or less normally. The situation forced me to grow up and mature more quickly and I now understand the value of life. I can see how fragile and unpredictable it can be and I’m definitely more positive. Small issues that used to get to me don’t really matter now in the grand scheme of things.”Read more
In August 2016, Wenna and Franco Pietrantonio were getting over a turbulent year. After the premature birth of their twin girls, who were in and out of hospital for their first year with various health complications, they faced another battle. In October, Franco was diagnosed with a large, presumed low-grade glioma after suffering a seizure in August. The father-of-three endured brain surgery to remove his tumour just a few days before Christmas which, thankfully, has since shown no re-growth. Now he requires yearly MRI scans and he and Wenna live with a new sense of vulnerability, knowing full well that life can turn upside down in an instant.
“Over the phone, the consultant said that Franco had a large tumour, presumed to be a low-grade glioma. To us, this was of little significance; we didn’t understand the diagnosis but instantly thought it would kill him. The diagnosis was a complete bombshell and it was awful. We tried to be strong and put on a brave face but personally, I felt very alone. Suddenly, I was on my own, looking after my family, and it was up to me to keep it together.”Read more
Francoise SheltonFrancoise was 47 when she was diagnosed with a brain tumour. She and her family had noticed some big personality changes prior to her falling unconscious. Francoise owes her recovery to the care and support she received from her children who were 20, 18 and 15 years old at the time. Read more
Gary RobinsonFather-of-two Gary Robinson marked his 34th birthday in May 2015 by running the Manchester 10K to raise money for Brain Tumour Research. It was the first such event he had taken part in and it came just months after he underwent surgery and radiotherapy to remove an extremely rare and aggressive grade II haemangiopericytoma brain tumour. Read more
Gemma GliddonMother-of-two Gemma Gliddon is awaiting surgery for a schwannoma brain tumour which has regrown after a previous operation. Determined to remain positive, Gemma, 32, is training to become a nurse and is helping to raise awareness and funds for research by taking part Wear A Hat Day 2015 just four days after her latest operation. Read more
George StockerIn April 2008 George became ill and was diagnosed with a brain tumour. George underwent over 80 weeks of treatment including multiple operations, chemotherapy and radiotherapy. George and his family started fundraising in August 2008 and have raised over £32,000. Read more
Gordon was diagnosed with a brain tumour at the age of 32, after first being told he had probably a stroke and then possibly he was HIV positive. He started writing comics to help his friends and family understand cancer and as something cathartic for himself, but is now publishing them, as well as exhibiting the comics to a wider audience. He feels happy and settled, but his seizures are a constant reminder that his life is very uncertain.
“Having a brain tumour has changed the way I live my life. When I am in my happy head, I often think I might not see too many more of these times, so I try to recognise good moments when I am in them and thank people who are there sharing them with me. Compared with so many people I feel very lucky that I got away with it so lightly. I have had no long-term effects from my treatment apart from hair loss, but I have my beard as compensation for that!”Read more