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
Grace ThoburnGrace and her husband-to-be bonded over the scars on their skull – she had gone through brain tumour surgery and he had a bone-anchored hearing aid. They are now expecting their second child and, as a patient representative on the Tessa Jowell Brain Cancer Mission, Grace is helping to shape the future for patients. Read more
Mum of two Natalie had shown no previous symptoms before she had a seizure in bed. She was devastated to be told she had a grade three anaplastic astrocytoma brain tumour. But, 10 years on, she is celebrating beating the doctors’ prognoses and will be taking on an abseil challenge to raise funds for research into the disease. She is determined to live life to the full and has travelled to her dream destination and, along with husband Nat, even built her own home.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
Nicci RoscoeNicci Roscoe is a professional inspirational speaker and corporate and lifestyle coach. Nicci's book, Fabulous Impact, is a guide to taking charge of your life and underpins her work to boost confidence and impact. In 2001, Nicci, a mother of two teenage children, was given the devastating news that she had a brain tumour. Read more
Nicola Goodwin thought she was showing signs of early menopause when she struggled to answer a question at airport security. The 48-year-old mum of two, decided to trust her instincts and get checked out. After numerous tests Nicola was diagnosed with a grade three anaplastic astrocytoma, requiring surgery and treatment.
“I remember my shock when I got the test results, showing the initial diagnosis had been wrong. I actually had an active grade three anaplastic astrocytoma and I would need surgery followed by further treatment. So, no waiting around.”Read more
Nicola, 29, worked incredibly hard to land her dream job in the illustration industry. Based in Holborn, she lived a stone’s throw away from work and had ambitious plans for the future. Then, she had a seizure. Diagnosed with a grade 3 oligodendroglioma, her aspirations and independence were shattered. She gave up work and moved back to her family home in Godalming to get through surgery, chemotherapy and radiotherapy. Now in remission, Nicola hopes to return to full-time employment.
“The MRI revealed a devastating diagnosis: I had a brain tumour. It was heart-wrenching to be given the news and I burst into tears. I was sat in an appointment room with my mum, dad and several nurses, but felt isolated and alone. I didn’t want to see the scan and didn’t want to know the ins and outs of my diagnosis. I just wanted things to go back to normal.”Read more
Nicole PhillipsNicole is a bubbly mother of two gorgeous girls. In 2008 her life changed dramatically - she found she had a tumour the size of an orange in her head. Although the tumour was benign it took nine hours of surgery to remove it at the risk of her speech. Despite the success of the operation she now has epilepsy, cannot drive, cook or bath her children.
Amazingly after all that, Nicole has come out fighting - she has a passionate desire to educate doctors about how to diagnose and then treat people with brain tumours. Read more
Just two months before the birth of his daughter, Oli Pendrey, 33, was diagnosed with a brain tumour. He had an operation to remove his tumour, which was eventually diagnosed as a grade 3 anaplastic astrocytoma and, three weeks after surgery, baby Harriet was born. Now Oli, his wife Beki, and their two boys Charlie and Sam, six and four, are looking forward to making memories with the new addition to the family.Read more
Paul BartlettPaul discovered he had “Terry the Tumour” when he was knocked off his bike and suffered concussion. He had had no symptoms at all.
“I am the luckiest person I know to have been hit by a London taxi… It was a bizarre way of finding out I had a tumour, which I named “Terry”. Somehow, giving it a name helped me to deal with it. It helped me in my fight and battle with the tumour and brought some humour to a very grave situation.”
Paul TaylorFormer journalist Paul Taylor, 56, of Thanet, Kent, was diagnosed with a glioblastoma multiforme (GBM) brain tumour in September 2012. He underwent surgery to debulk the tumour and now, every three months he anxiously awaits the results of a scan to tell him if the tumour has returned. Read more
Philip was diagnosed in 2014 with an anaplastic astrocytoma brain tumour at the age of 38. It meant he had to leave the job he enjoyed as assistant head of a school. The uncertainty of his future with a brain tumour was brought home to him when a pupil at his school was diagnosed with the same condition from which she later passed away.Read more
Poppy EdenPoppy’s brain tumour was overlooked on no less than 22 medical appointments. Eventually diagnosed after an MRI scan, she was rushed in for emergency surgery at the age of ten. She missed Wear A Hat Day last year as she was too poorly, this year she is determined to join in with her class mates and wants others to take part in order to raise awareness and much-needed funds for research into the disease.
“Despite the agonising amount of time it took to get a diagnosis, we are thankful that Poppy’s tumour was not cancerous and that she didn’t need any follow-up treatment. After everything she has been through, Poppy is now happy and well. Play therapy has helped her come to terms with her experience as the shock and trauma of the diagnosis and surgery caused her to have nightmares. Physiotherapy has also meant she has been able to get back to dancing which she loves so much. In fact, just eight months after the operation, Poppy won a solo dance competition. I am so, so proud of her – we all are.” Read more
Reuben CoeReuben Coe, 17, first became ill during a school geography trip. Within days he was diagnosed with a brain tumour in Lancaster and he and his mother Karen waited for an emergency ambulance to transfer them to Manchester Children’s Hospital. After five months of treatment, Reuben is now back at school studying for his A levels. Read more
When Waterlooville resident Richard Preston was diagnosed with a glioblastoma multiforme (GBM), he was told he could have as little as two years to live. But now, five years on Richard is doing well and will soon be celebrating his 50th birthday – a day he thought he would never see. On average, less than 20% of brain tumour patients survive for five years or more post-diagnosis.Read more
In 2014, aged 41, Ronnie Perring was diagnosed with a low-grade brain tumour and the hard-working, family man’s life was turned upside down. As he underwent two surgeries, radiotherapy and chemotherapy, Ronnie was forced to give up his livelihood and stop running the family’s floristry business at Portobello Market. Despite his tumour transforming into an aggressive high-grade glioblastoma in 2015, Ronnie has come back fighting with the love and support of his wife Caroline and their three children.
“But he’s a fighter and he always comes back fighting. I feel helpless but I want to do something to show him how much I care... I can’t reverse time and help Dad but I can help raise funds towards research into this horrible disease and help prevent others from suffering like he has.”Read more
After suffering from a seizure while driving to work, 40-year-old Rory Burke underwent numerous tests. Results revealed he had been living with a brain tumour and the next step would be an awake craniotomy. As well as having to deal with side effects of the tumour, Rory had to cope with the breakdown of his marriage, moving home, being unable to work and undergoing further treatment.
“The diagnosis wasn’t the only news that changed my life that week. After meeting with the doctor to discuss my results I found out my marriage was over and my wife and our six-year-old son left our family home. I was also trying to make sense of how I could work, as I was banned from driving due to epilepsy and the seizures. It really was a tough time for me, especially not having a partner there for support.”Read more
After experiencing months of crippling migraines, sports-mad Sam was diagnosed with a brain tumour at just 11 years old as he studied for his SATs exams. After undergoing complicated surgery to remove the tumour, Sam had to spend three months in a children’s hospital to recover. Now 24, Sam lives his life like anyone else his age and is thankful that the tumour hasn’t stopped him from playing football, swimming or going out with friends.
“The radiographer who had looked after me during the scan, had to tell my Mum that her son had a Brain Tumour, as well as Hydrocephalus, which meant I had fluid putting pressure on my head. She cried, came back out and tried to tell me as calmly as she could. Obviously being 11 at the time, I didn’t fully understand how big the situation was.”Read more
Samir Khatib, 66, was an active and fiercely intelligent father and grandfather when he was hospitalised after a major seizure. Scans identified a rapidly growing brain tumour needing urgent surgery. Samir suffered two heart attacks in the run up to his operation and a third immediately afterwards. Seeing the effects of all the trauma on her father’s speech and memory, his daughter Rahaf was prompted to campaign and fundraise for the cause.
“As we approached Baba, after surgery in the Neuro ICU recovery room, we were informed he was enduring yet another heart attack. Apparently it started while they were still closing him up in theatre. We were all in disbelief. Our optimism that the worst was over evaporated, as we saw that it was in fact just the beginning.”Read more
Sarah spent her 30th birthday in hospital after complications during surgery to remove her brain tumour. Left with weakness down one side of her body, Sarah has undergone radiotherapy and is taking chemotherapy. With her tumour now deemed inoperable and with an unsure prognosis, Sarah and Matt brought forward their wedding, cancelling plans to get wed abroad with family and friends and taking themselves off to say their vows as “they just wanted to be married.”
“I am proud of my baldness and I think it is a shame that women going through the same thing feel they have to conform and cover their hair loss. I just wish people would do what they felt most comfortable with without having to worry about what others think. I am a proud baldy and saving £50 a month on hairstyling and products. More than anything else, my diagnosis means I have gained a real perspective on life – what matters and what really doesn’t! I have changed in that sense. I know how much I am truly loved, and have been able to tell others how I really feel. I am proud of my own strength during this process, and feel proud of everything I have ‘got through’ so far – surgery, chemo/radio, learning to walk again. All whilst wearing my red lippy which always gives me a boost. I have been just as happy during the last six months as before. There have been bad days of course and things are different, sometimes harder, but I have never been unhappy and there is always something to be positive about.”Read more
Selina Siak Chin YokeWhen she was just 34, high-flying banker Selina Siak Chin Yoke was devastated to discover that her mild dizziness and drowsiness were actually symptoms of a benign brain tumour. After making a full recovery, she was then diagnosed exactly ten years later with breast cancer. Selina changed her life and became a published author, determined to make the most of every moment.
“It’s the psychological effects that are harder. I still think about it every single day, wondering if it will recur. That thought never goes away, especially as my original symptoms were so mild and easy to miss.”Read more
Shannon MooreShannon was diagnosed with a rare craniopharyngioma brain tumour when she was just nine-years-old. She underwent emergency surgery and has endured several operations over the years, plus treatment including radiotherapy and hormone replacement. Now 18, and a college student, she is certified blind and relies on a long cane to help her get about. She is looking forward to leaving home and studying at university. Read more
Sophie DuffeeFor the parents of five-year-old Sophie Duffee their world began to unravel when she was diagnosed with a brain tumour. They discovered her in bed and feared the worst as she suffered a severe seizure. Fortunately the tumour was operable and Sophie has just returned to full-time school. She undergoes scans twice a year. Read more
Sophie PetersSophie was eventually diagnosed with a low-grade meningioma brain tumour after suffering crippling headaches for nearly a year. Feeling frustrated and desperate after months of repeated visits to her GP, it was a chance visit to an optician which led to her diagnosis. Eighteen months after her surgery Sophie is back at work but still struggles with nightmares about the tumour coming back. Read more
Army photographer and father, Steve Blake, 36, was out on a job when his vision went blurry and his head began to hurt. Doctors diagnosed a sinus infection and prescribed decongestants, but when he was still suffering with headaches 18 months later, Steve was finally given a scan. The MRI revealed that, like his mum three years earlier, Steve had a meningioma brain tumour and needed surgery.
“It’s good to be back with my team and hear the usual banter. I much prefer it for people to treat me normally and joke around. The guys check out my scar and say: 'Man up, it’s only a scratch!'"Read more
Stewart TranterStewart Tranter is living with an inoperable grade III astrocytoma brain tumour. The tumour was diagnosed in 2013 and, supported by his wife Anna, he has coped with extensive treatment including 30 cycles of radiotherapy and 14 months of chemotherapy, including the drug Temozolomide. Thanks to an understanding employer, Stewart, 35, continues to work and he is backing the campaign for more research funding. Read more
When mum-of-three Sue Humphreys, 48, from Walsall, started suffering from severe headaches, she questioned whether she was living with a brain tumour. Sadly, an MRI scan in October 2007 confirmed her fears; she was diagnosed with a grade 2 astrocytoma. Sue endured two craniotomies and chemotherapy, while raising her children Aimee, Luca and Clara, now 18, 16 and 13, with her husband Craig. In May 2018, Aimee honoured her mum by completing a sponsored abseil down the Spinnaker Tower, raising £1,200 for the Brain Tumour Research charity.Read more
Tanya MalpassRetired A&E consultant, Tanya’s first indication that anything was wrong was when she found she was muddling her words. With no other symptoms, it was a huge shock to find that the cause of her speech impediment was a glioblastoma multiforme grade 4. Mother of three grown-up children: Rosie, 24, Danny, 23, and Freddie, 18, she remains upbeat and incredibly positive, absolutely determined to be a long-term survivor.
“Sitting with a neurologist with my scan up on the screen, I heard him say: ‘Well, it’s not a stroke’. Being a retired doctor, I didn’t actually need to be told that – I immediately recognised the golf ball-sized ‘blob’ at the back of my left temporal lobe as a brain tumour.” Read more
Tom BeechSports-mad entrepreneur Tom Beech, now 22, was only five when he had his first seizure. With the support of family and friends, Tom is living with his low-grade brain tumour while also fulfilling his dreams of travel and launching his own fitness business.
“I’m living my life as I want, with the business ready to take off, and I’m even taking a few months out to travel. My only worry is getting the rucksack full of pills through customs…”Read more
Tom DewaneTom was a teenager when a problem with his eyesight was spotted in examinations as he prepared to join the army. He was diagnosed with four brain tumours which, following treatment, are stable. Twelve years later Tom is married with two children and tries to remain positive although no-one can tell him what the future holds.
“I was 18, had met a lovely girl, and was planning to join the army when I was diagnosed with multiple brain tumours. I felt as if my life had ended before it had really begun. The diagnosis meant I had no chance of serving my country in the armed forces. I had to give up work and could no longer drive and no-one really knew what lay ahead or how much time I had left.”
When Milton Keynes resident Tom Meager was diagnosed aged 26 with a grade 3 anaplastic oligoastrocytoma, it was a shock because his family were expecting it to be confirmed as a low-grade tumour. A devoted family man, Tom is inspired by his two young children and is doing well and now on annual scans.Read more
When mum-of-three Vanessa Fewell started suffering from a mild pressure in her head, she became paranoid that she, like her close friend Ali Smith, had a brain tumour. Vanessa saw her GP as a precaution but the results of her MRI only confirmed her worst fears. Diagnosed with a grade 2 astrocytoma at the age of 40, Vanessa underwent surgery, chemotherapy and radiotherapy but sadly lost Ali along her journey to recovery.
“Radiotherapy finished just before Christmas and I started chemotherapy soon after. Meanwhile, Ali was rapidly declining and, in January 2017, she passed away. It was devastating to lose her. Her funeral took place the week I began my chemotherapy and it was heart-breaking. Her death made me realise how different things could have turned out for my family.”Read more
Vetri VelamailVetri worked in Rotherham as a GP for more than 20 years and is a proud father of three much loved children. Suffering with double vision, an optician at Specsavers sent him to A&E and he was diagnosed with a Glioblastoma Multiforme.
“From not sleeping through worrying about my illness, I now lie awake thinking about how I can help raise awareness of the desperate need for charitable fundraising for research into brain tumours… I am getting weaker and I know I cannot be helped, but there must surely be a cure for future generations.”
A year after her diagnosis and surgery to remove a low-grade brain tumour, Vicki is back at work as a hairstylist and loving life. Despite being warned her tumour could grow back, Vicki is celebrating after four clear scans. She is sharing her story in the hope of telling others that there is life to be lived after the devastation of being told you have this disease.
“I hope that sharing my story will inspire others. As dreadful as a brain tumour diagnosis is, sometimes there are happy endings. At the moment I feel very blessed, I am on cloud nine, back at work and loving living a very normal life. I have a souvenir of the operation – a scar which runs from the top of my temple around my ear – but have no ill effects whatsoever and feel invincible.”Read more