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
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
When young mum Melissa Ross started to experience pain in her legs, she thought it was caused by being on her feet all day. However, tests revealed she had been living with a brain tumour and this was the cause of her pain. Due to its location she would not be able to have surgery and would need to undergo an intensive cause of radiotherapy to control it. Despite not knowing what her future holds Melissa is determined to enjoy her life with partner Lee and their five-year-old daughter Millie.
“Just two days before my diagnosis my nan died suddenly from a heart attack. Dealing with this grief and then the news of the tumour was so much to take on board. I was only 24 and just trying to just live my life and take care of my family, I just couldn’t take everything in.”Read more
Professional dancer Holly Dooley began experiencing mild seizures whilst on a tour of Russia. Having recently got married and looking forward to starting a family, her world was thrown into turmoil as it became clear from an MRI scan, that the seizures were caused by a tumour on the front right temporal lobe of the brain. Having endured numerous operations and radiotherapy over the last four years, Holly remains determined to stay positive and enjoy her life.
“It was time for my career as a professional dancer to end. I have achieved some amazing things over the years but having to close the curtain on the job I loved was heart-breaking.”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 was born and bred in Doncaster and worked for the civil service for over 30 years. He is very proud of his two sons, Darren and Andrew, and his three grand-daughters. Never having been a drinker or a smoker, Alan has enjoyed making music most of his life. He learnt to play the euphonium as a very young boy and has played in numerous brass bands within South Yorkshire and Lincolnshire since the age of eight, as well as becoming a musical director and conductor. Alan met his partner, Sarah, and moved to Scunthorpe in 2013, a year before he was diagnosed with a GBM4 and given just months to live.
“I had a CT scan and could see for myself there was a big white lump in my brain. I got my piece of paper again and wrote, “I can see that big white lump. I know I haven’t had a stroke.”
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
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.”