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
Neil was only 25 when he was diagnosed with a brain tumour the size of a plum. After painful brain surgery, he was told his tumour was a high-grade medulloblastoma. Dealing with the financial, physical and psychological impact of his diagnosis, he is trying to rebuild his life.
“My plan now is to take care of myself. I eat healthily, go to the gym, do Pilates. My last scan in October 2018 was all clear so I’m full of optimism and hope. I’m also extremely lucky because I have my parents, my two younger brothers and my girlfriend who are all really caring and supportive. I want to build enough strength to work full-time again. I believe I’ve found my niche and my dream is to continue working in mental health and support others. I have got used to the fact that I’ll never be who I was before and I’m OK with that now. My diagnosis has helped me to find my purpose and provided me with a clear path.“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
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
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
London lad, Adam Carroll, was on a work trip to New York when his brain tumour first revealed itself. Aged 33 at the time, Adam collapsed and was rushed to hospital where he was told the devastating news that he had a high-grade tumour. The months that followed weren’t without their drawbacks but, 18 months on, he is now putting his time and energy into running and fundraising for research into the disease.
“I’ve been through a lot but I truly believe my diagnosis has made me a better person – I’m so much more appreciative of life and I just want to do whatever I can to help others with this disease. By fundraising for research into brain tumours, I know I’m doing something positive.”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
Since Ali was diagnosed with a brain tumour and epilepsy in April 2005, she has faced life with a smile despite the ups-and-downs of her illness. Having a great support network around her – in particular her dog Harry, who was able to sense the onset of her seizures – she has taken everything in her stride. Now she has participated in an indoor skydive to help fund research into the disease.
“The 13 years that have passed since my diagnosis have been full of ups-and-downs but I am determined to beat each challenge and keep living my life to the full. I’m in a battle with my tumour and choose to use positive mental attitude, good humour and determination to keep on smiling.”Read more
Talented artist Amanda Day had always been top of the class and was hardworking at school, but when her health began to deteriorate, she started to fall behind. After struggling for months to get to the root of her symptoms, Amanda was diagnosed with a small pilocytic astrocytoma in her brainstem. Now, she is left with irreversible and long-term effects of the radiation treatment she had four years ago. She is coming to terms with the fact she may never achieve her aspirations of going to university, owning a home and having a child.
“It frustrates me that most of my symptoms are due to the radiotherapy treatment I had four years ago, as opposed to the tumour itself. The treatment has left me with long-term symptoms, such as short-term memory loss and confusion, which will get worse over time. It has had a devastating impact on my education and daily life is a big struggle.”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 was just 27 when he was diagnosed with a high-grade anaplastic astrocytoma brain tumour. He underwent surgery and began chemotherapy but after four months he stopped the treatment and made significant changes to his diet. Five years on and Andrew has had no tumour growth, and is continuing to follow a restricted Palaeolithic ketogenic diet. His quality of life has drastically improved and he is dedicating his studies to research into the disease.
“Research into brain tumours is the only hope. We need more studies and clinical data, but in the meantime, I will continue to use myself as a human guinea pig. I know my cancer could come back at any time but if we understand more from a metabolic standpoint, then brain tumours can potentially become a condition we live with, rather than a disease we die from. It’s my passion and my dream and I desperately want to help others and help to shape the future in a positive way”Read more
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
Five years after her brain tumour diagnosis, Anna is at a crossroads. Until now, she has declined any intervention or conventional treatment preferring instead to trust her own instinct and to “watch and wait.” But, with her latest scan revealing growth, albeit minimal, she has an important decision to make.
“Physically I’m in good shape and strive to live my life to the full but there is a cloud of uncertainty above my head. I know that somewhere down the line I will have to take action but no-one can tell me with confidence when the right time is and what that action should be. It is a frustrating time but I am hopeful. In many ways I am grateful to my brain tumour, it has made me realise what the most important things in life are. It has given me direction and a focus. After all, it is going to be with me for the rest of my life and so I had better make the most of it.”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
Former headteacher, Bernice McCabe OBE, has instilled one essential piece of advice in her pupils: you have to rewrite the story when life takes an unexpected turn. Little did she know, Bernice would need to apply this lesson in her own life when, at the age of 65, she was diagnosed with a glioblastoma multiforme (GBM). One craniotomy, one surprise proposal, and several courses of treatment later, and Bernice is as resilient and optimistic as can be.
“A CAT scan confirmed I wasn’t suffering from a stroke but something else was happening. I was transferred urgently to Addenbrooke’s Hospital with Rod driving separately behind the ambulance, worrying that I wouldn’t be alive when he met me there.”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
Beverley had always been healthy and active until she suddenly started having excruciating headaches and vomiting. She was eventually diagnosed with a low-grade haemangioblastoma and underwent surgery which, happily, was successful in removing the tumour. Now, 10 years on, she feels it is as if the experience never happened.
“I am so thankful I was lucky enough to have the type of brain tumour I had, but I am very conscious that the prognosis for the vast majority of brain tumour patients is not nearly so rosy. I am sharing my story to help raise awareness because I know that much more research needs to happen to find a cure.”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.”
Bradley was diagnosed with an inoperable brain tumour at the age of three and underwent radiotherapy. Apart from headaches, his life continued as normal until he was 18 and had to be flown home by air ambulance while on holiday for a surgical procedure to help relieve pressure building up in his head. Then at the age of 23, following a massive seizure, he had a 10-hour operation to attempt to remove the ‘inoperable’ brain tumour. Miraculously, the neuro-surgeons succeeded in removing 95% of the tumour. In the years since his surgery, Bradley has worked hard on his rehabilitaton and now, aged 29, can walk almost perfectly, although he is waiting to have Botox to help regain movement in his right hand.
“My neuro-consultant was becoming very concerned, but he still didn’t want to take the risk of trying to remove the tumour, due to its dangerous position and the risks of life-changing consequences. However, one day I had a massive seizure and the doctors were unable to bring me round. The pressure had built up to a dangerously high level which meant there was no option than to operate to relieve the pressure as quickly as possible. I had the emergency procedure and was taken to the High Dependency Unit and put into a coma. Meanwhile, my parents were told that it was now imperative to attempt to remove the ‘inoperable’ tumour once the pressure in my head had been reduced and I had returned to a stable condition.”Read more
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!”
Carly Beasley had landed her dream job and had recently married her childhood sweetheart, Kris, when she had her first seizure. Following a series of tests and scans, she was diagnosed with a low-grade brain tumour in October 2017 and had surgery to remove the tumour three months later. Having made a remarkably quick recovery from the operation, Carly is now back at work and determined to use her experience to help others.
“With anything that people go through, not just brain tumours, you go through a mix of emotions. I have had anxiety about my illness and have gone through the inevitable ups-and-downs, but there are many positives I can take from my situation. At least my tumour is low-grade. At least I made a full recovery.”Read more
When Carol Hayes was sent to A&E in February 2018, she expected the worst and sadly her fear became reality. It was a brain tumour that had been causing her constant headaches and affecting her vision. The 56-year-old is still trying to come to the terms with her diagnosis but she remains positive as she undergoes six months of chemotherapy.“Shortly after, my worst fears were confirmed: I had a brain tumour. It was like a truck had hit me in the chest but somehow the news just didn’t sink in… Nothing can prepare you to hear that, and even though I’d been worried I had a brain tumour, I couldn’t believe this was happening to me.” Read more
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.”
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