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
Harry St Ledger
Six-year-old Harry was diagnosed with a suspected diffuse intrinsic pontine glioma (DIPG) after what should have been a straightforward procedure to fit a grommet in his ear revealed a sinister growth in his brain. His tumour type has a shockingly poor prognosis and limited treatment is available. There is no option for Harry who will battle for his life dressed as Spider-Man, his favourite superhero.
“I am shocked to learn that brain tumours are the biggest cancer killer of children and adults under the age of 40, yet so many people still think it is leukaemia which is killing more of our precious children than any other form of this hideous disease. I am angry to think that Harry will have to live away from the security and comfort of his own home during treatment and I am frightened to think of what lies ahead.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
Father-of-two Stuart was diagnosed with an aggressive brain tumour at the age of 37. He has undergone surgery, radiotherapy and chemotherapy but his condition has deteriorated leaving him with mobility problems, trouble with his memory and personality changes.
“It is so hard for the girls too and we have been open with them about their dad’s diagnosis and treatment all along. When we get back from a hospital appointment we sit round the table, look at the scans and discuss what’s happening. While we know things are going to get worse and we have to be realistic, we are also hopeful that, as he is young and otherwise healthy, Stuart will beat the odds.”Read more
A seizure struck Adam down out of the blue and led to his brain tumour diagnosis. He underwent surgery, radiotherapy and chemotherapy and was well enough to take part in a gruelling cycle challenge in the heat of the Arizona desert. He completed the event with his father who, 15 years earlier, had lost his mother to a brain tumour.
“To be diagnosed with a brain tumour was a massive shock but I found a way to stay positive and this has helped massively. There is no doubt that a brain tumour diagnosis turns your world upside down. It is hard not just for the patient but for everyone around you. I am lucky that I have had such great support from my family.”Read more
Alan WilliamsMy husband Alan was diagnosed in 2007 with a brain tumour, following a seizure. It was just five years after his younger brother, James, passed away from the same devastating disease. Alan, 46, has been told that the tumour has now become very aggressive and, following recent further surgery at The Royal Victoria Hospital, Belfast, he is currently undergoing chemotherapy, under the care of The Cancer Centre in Belfast City Hospital.
“During our journey through this illness, Brainwaves NI has been our rock, offering advice and information when needed, as well as absolutely invaluable support from both the committee and members, all who have been affected in some way by this illness. The people behind this charity work tirelessly to raise funds for research into brain tumours which I believe will benefit so many people in the future who are affected by this terrible disease.” Read more
Alexandra DixonAlexandra Dixon was diagnosed with a low-grade oligodendroglioma brain tumour after suffering a series of severe epileptic seizures while on holiday in the south of France. Back in the UK, she underwent surgery in June 2007. An MRI scan in 2012 revealed the tumour had returned. She had surgery again followed by radio and chemotherapy. Read more
Amanda DayFor months, doctors accused Amanda Day of lying and dismissed her symptoms as “growing pains” and migraines. In fact, the teenager had a life-threatening brain tumour which was overlooked countless times, even when it was clearly visible on a brain scan. A talented artist, Amanda is now studying for her A levels, and despite being told that the tumour will regrow, she is determined to achieve her potential and live life to the full.
“My life as a ‘normal’ teenager was over. I felt isolated and abandoned by my friends. It was painful to see on Facebook that my friends were out partying and I couldn’t be a part of that. During my treatment I lost lots of weight and watched as my long hair and eyebrows disappeared. I felt ugly and disgusting and refused to have my photograph taken. Instead, I drew a self-portrait of what I hoped to look like once it was over. I had come to terms with dying but I didn’t want to be stuck in a dead-end job and I was determined to get back to school. We know my tumour will grow back but no-one knows when. I keep my hair short now. It’s my war wound and I wear it like a trophy, which makes me proud of everything that I have been through.” Read more
Sales Manager Amy Drummond was just 13 years old when she began to experience small seizures and memory loss while studying for her GCSEs. After visiting numerous doctors in a bid to find out what was wrong with her, she was finally diagnosed with a rare type of brain tumour. Fortunately, Amy was able to have the tumour removed by surgery, but the tumour took its toll on her being able to enjoy teenage life too. Now, as she heads towards the milestone of turning 30, Amy is determind to not let her past affect her future.
“I have always been open with people about what I went through as a teenager and how it changed me as a person. Looking back, I missed out on school, socialising, dating, playing sport and even making friends. I would even say my brain tumour robbed me of my teenage years.”Read more
Determined mum Amy Quin will mark the first anniversary of her brain tumour diagnosis by skydiving 15,000ft from a plane with her sisters. The trio are raising money for the charity Brain Tumour Research. With a prognosis of five to seven years, Amy is hopeful that research will help to identify new treatments which would mean her tumour is operable giving her precious time with her family including partner Lewis and their four-year-old son Hector.
“In some ways my diagnosis has changed my life in a positive way - I now say yes to many more things, I want to embrace every opportunity I can and make the most of my time. This year, exactly 12 months since my diagnosis, I will be jumping 15,000ft out of an aeroplane with my two sisters. I did ask my consultant before I signed up and he gave me the thumbs up ‘as long as I wear a parachute.’ We’re raising money for Brain Tumour Research as, for me, this is my best chance. With quality research, maybe there will be a new treatment in a year’s time and my tumour will shrink and become operable.”Read more
Andrew ScarboroughAndrew was just 27 when he was diagnosed with a high- grade anaplastic astrocytoma brain tumour. He underwent surgery and began chemotherapy. After four months he stopped the treatment and made significant changes to his diet. Two years after surgery, a scan has shown no tumour growth, he has been able to come off all medication and is hoping to go back to work to investigate how nutritional therapy, including a restricted ketogenic diet, could help other patients.
Ann SwaddenAnn was 24 and had been married to Alan for less than a year when she was diagnosed with a brain tumour. In March, National Brain Tumour Awareness month, she will undergo a craniotomy procedure to remove the low-grade glioma. She opted to have surgery rather than “watch and wait” as she wants to be free of the tumour when she moves into her new home and looks forward to starting a family.
“I was given a choice: watch and wait or have surgery to remove the tumour. I have opted to have the operation on the basis that I am fit and healthy and have been advised I can expect to recover well. Without doubt, this is a really big thing but I know that there will be people around me whose job it is to make sure I don’t die and that I maintain a good quality of life. If anything, I am more apprehensive about the recovery than the operation itself. I know that I will need some form of speech therapy although my surgeon did joke that I was really good at talking so he didn’t think that would be a big problem!” Read more
April WatkinsApril was diagnosed with a grade IV medulloblastoma in 2010 during her first year at university after suffering with debilitating headaches. Her mother had recently been diagnosed with lung cancer and tragically passed away while April was receiving treatment following her brain surgery. She has since been given the all clear. Read more
Ben AndersonFourteen-year-old Young Scout Leader Ben Anderson went to the optician for a check up at the end of the summer holidays. Within hours he was referred to hospital and a scan revealed he had a brain tumour. Immediate action was required and Ben underwent surgery. He recovered well but needed further treatment, this time in the US, to halt the growth of his tumour. Despite the gruelling treatment and disruption caused to his schooling, Ben did well in his GCSEs and is now studying for a career which he hopes will see him working with children with special needs.
“My world had been turned upside town. I had walked into the opticians with a child who seemed perfectly healthy and was just days away from going into year 10 to start his GCSE courses. Less than 24 hours later my son was diagnosed with a brain tumour and needed life-saving surgery. I was 29 weeks pregnant. When Ben turned to me and said: ‘I really want to be here to meet my new baby brother or sister. Am I going to die mum?’ I told him no, he wasn’t going to die and we would do whatever was needed.” Read more
Ben LindonBen was diagnosed with an inoperable grade 2 glioblastoma brain tumour on March 11, 2008, a week before his 29th birthday. He underwent radiotherapy treatment and continues to receive chemotherapy, having endured 54 cycles of temozolamide to date. Amazingly, having been told that all his treatment would render him infertile, in September 2012, Ben fathered a miracle baby girl, Martha Rose. Even more amazingly, his wife, Kate, gave birth to their baby son, Sidney George, in June 2014, despite Ben having endured more than 60 cycles of chemotherapy by then.
“I hope to use what is a very difficult and life-threatening experience for me to raise awareness and funding for research into brain tumours. If I can raise just a small amount of money and boost people's understanding of what is a very little-known-about disease, not to mention a terrifyingly complex issue, then my experiences will not be wasted and maybe other people suffering will see that all is not lost.” Read more
Bethany was just nine when an apparent minor allergy to oranges preceded her shock brain tumour diagnosis. Her Mum, Trish, saw her little girl happily dancing around the kitchen to One Direction before screaming out that her head was on fire and collapsing. Despite the years of surgery, hospital appointments and medications that followed, Bethany is now a bright and positive fourteen-year-old, eager to live her life to the full while knowing that her condition will be life-long.
“There’s a lot that I don’t completely understand, some things that I don’t even remember, but I still have to cope with it all anyway. The tumour doesn’t care if I understand or not.”Read more
Bob PickenA successful double bass player, Bob Picken has been a member of Liverpool band Ella Guru, as well as a backing for artists such as Neville Skelly, She Drew The Gun, Bill Ryder-Jones and Marvin Powell.
Diagnosed in 2012 with an anaplastic astrocytoma, whom he affectionately calls “Bieber” in reference to the Canadian singer Justin, Bob has managed to overcome a number of setbacks to carry on with his career, and in his own words “stick two fingers up to cancer”.
“You go through five stages of cancer: denial, anger, bargaining, sadness and eventually acceptance.”
After suffering a seizure at his home in Milton Keynes, 54-year-old Brian Carrick underwent surgery to remove a grade two oligodendroglioma, which had been growing unnoticed for at least 10 years. Brian feels tremendously lucky it was discovered at a point where he could benefit from new research and before it became cancerous. Brian is currently undergoing a six-week course of radiotherapy followed by chemotherapy to try and remove a small amount of tumour that was left after surgery.
“I dread to think what could have happened if Emma hadn’t been home that day, or if I was driving at the time of the seizure. I’m very lucky that I’m here and able to tell my story, unlike so many others that have been struck by such a devastating disease like cancer.”Read more
Manchester pub landlord, Carl Piddington, was fit and healthy with three children, when he discovered one day that he could no longer control his hand. After a massive seizure and subsequent tests, Carl was told that his aggressive brain tumour could end his life within a year. Determined to be a long-term survivor, Carl is now eight years on after diagnosis and facing yet more treatments.
“I know this is terminal. Maybe it will get me, maybe it will be something else, but I’m not going to sit and wait for it. As my dad always used to say, while laying his hands on my shoulders and looking into my eyes: “you are a lion, my son!”
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 BoutwoodCharlie was the much wanted son of his parents. They already had two daughters and he completed their happy family. At 20 months he faced the terrifying prospect of surgery to remove an enormous and malignant brain tumour. Miraculously he made a remarkable recovery. Read more
Charlie CoxCharlie was just three and a half months old, in 2011, when he first started to have any symptoms. At eight months, he was diagnosed with a brain tumour (which turned out to be a grade 2 oligoastrocytoma – rare among young children) and at 11 months he underwent surgery. Just over three years later, in January 2015, Charlie welcomed his little brother Freddie into the world and in September the same year, he started in Reception at Abbey Primary School in Morden, Surrey. He had 43 cycles of chemotherapy during an 82 week period which finally came to an end in January 2016.
“Most of the time I have managed to stay positive – I have had to be strong for Charlie. The only time I really broke down throughout this roller-coaster was the day before my baby boy had his huge operation. I couldn’t help worrying that I might end up leaving the hospital without Charlie.” 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.”
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
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
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.”
A freelance writer and educational consultant, Collette stumbled at the airport and was taken to the doctor as soon as she arrived in France for a holiday. She was diagnosed with an aggressive glioblastoma multiforme (GBM) and underwent surgery and treatment before she could travel home to Devon where she formed a pact with her doctors that she would outlive her bleak prognosis. Together with her husband Reinhard, she is facing the future with positivity and a sense of humour.
“I usually speak my mind, and say it as it is, so I asked all the professionals to do the same for me. The resulting full and open communication between us has been superb, and has helped our planning and decision-making very much. In the ten months since our working relationship began, we’ve established a rapport and a bond that’s giving us all a great deal of pleasure. My oncologist and I have made a pact – between us, we’re going to beat the odds on this one, and skew the statistics significantly. He’s monitoring me closely, with an MRI every three months; and I’m being a good girl and doing as I’m advised. I’m feeling very well, and am doing very well. Long may it continue. I’m one very lucky woman.”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
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