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.
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
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.”
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
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.”
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
Darcyana Aspery-WalshDarcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. Despite months of morning vomiting, right-sided weakness and balance issues, her parents felt they were fobbed off with unconvincing diagnoses and made to feel like they were being over-protective.
“My mission now is to raise awareness of brain tumours and their symptoms. Mothers know by instinct when their children are seriously ill and we can’t always just accept that the medical profession will come up with the right diagnosis first time, or even the tenth time. Sometimes you just have to keep knocking on the door until someone finally listens. Thank God someone did listen… just in time. We came so close to losing Darcyana.” 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 GrantDavid Grant was diagnosed with a glioblastoma multiforme grade IV brain tumour in August 2005. He was working as a Senior Project Manager for the Royal Bank of Scotland and married with a two-year-old daughter at the time. David was told he could have just 12 months to live. Fast forward to today: David hasn’t received cancer medication since 2006 and is now watching his daughter growing up. 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
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
Fiona ReidFitness fanatic Fiona discovered she had a brain tumour after collapsing at the gym. In the last six years she has undergone surgery and treatment as her tumour, classified as “low-grade” has continued to grow and cause paralysis. With the support of her husband, mother and friends, Fiona remains optimistic and will be supporting Wear A Hat Day 2016.
“I have known from the beginning that my tumour can’t be cured but I remain relatively optimistic. New treatments are coming out and I hope that there might be trials which I could be put forward for. My husband Andy is a very positive person. He has been a tower of strength and has kept me going. I see my mum every day and have great support from my friends.” 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 EdgarGemma, 29, a paediatric nurse at Colchester General Hospital, and a wife and mother, was diagnosed with a malignant brain tumour after just a few days of migraine-type symptoms. Her sons, Noah and Dylan were just eight weeks and two years old at the time. 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
Grace DalyA healthy 15-year-old, Grace found herself with the devastating diagnosis of a brain tumour after a short bout of headaches, dizziness and vomiting.
After undergoing surgery, chemotherapy and radiotherapy to eradicate her medulloblastoma, Grace has now been clear for seven years, and is a nurse, inspired by the amazing care she received during the battle with her tumour.
“It’s a totally devastating thing to lose your hair when you’re 15 when the way you look is so important.” Read more
Gruff CrowtherSchoolboy Gruff Crowther was diagnosed with a brain tumour after minor but repeated difficulties with his eyesight. At the age of seven, he was the youngest patient to attend a reception at Speaker’s House, Westminster, in March 2016 when he joined the charity Brain Tumour Research in calling for more funding for the devastating disease.
“We have been very open with Gruff right from the start, telling him right from day one that he has a tumour and that means a lump of badly behaved cells which are reproducing incorrectly. He is aware that there are different types of brain tumour and different types of cancer. While Gruff’s tumour is low-grade we mustn’t been fooled into thinking that means it is benign – we are aware that the rate of growth can accelerate and things can become problematic. Left untreated, Gruff’s tumour would definitely have caused more problems as it spread. So far, his scans have shown the tumour has reduced in size and, for now, things are looking positive.”
Heather TurnerHeather was 24 when she was diagnosed with an acoustic neuroma, a low-grade brain tumour which caused partial hearing loss. The only treatment option was surgery but complications caused nerve damage leading to life-long difficulties including facial palsy and the loss of sight in one eye.
“It took me ten years to recover from the damage caused by surgery to remove my brain tumour. There have been times when I’ve wondered if life was still worth living. Although I have lost count of the number of operations I have had to make me look ‘normal’, I now feel as if the worst thing that ever happened to me has changed my life for the better.” Read more
Helen LeghNew mum, Helen Legh, a BBC radio presenter, feared her baby daughter Matilda wouldn’t survive. Now five, Matilda is thriving, but Helen faces the grim reality that she won’t see her daughter grow up and is making the most of whatever time they have left together. She is also creating a treasure chest of precious mementoes for Matilda to cherish when she is gone.
“Even my worst fears hadn’t prepared me for this. I immediately thought of my Matilda, then just four years old, who had only recently started at school. How long was she going to have a Mummy? I was so sad to think how I was never going to see her grow up, or get married, how I was never going to be a Granny. And more to the point, how were she and her Daddy going to cope when I died?” Read more
Holly TimbrellHolly had a headache which wouldn't go away. An MRI scan revealed a brain tumour in a very inaccessible place. Now she is a teenager trying to live a normal life in between 3 monthly scans. Read more
Ian lives with his wife, Debi-Ann, and their beloved dogs. He believes in healthy living and follows a strict nutritional plan. Before he was diagnosed with a grade III oligodenroglioma, he had never had any serious illness or been admitted into hospital.Read more
Jack Byam ShawIn May 1999, Sheila Hancock's grandson Jack was diagnosed with a brain tumour at just four years old. His mother, Melanie, was shocked at how long it took to diagnose him and at the nail-biting wait to determine the type of tumour and the treatment necessary. Reeling from the shock of diagnosis, they were delighted after several weeks of waiting to discover that they were one of the lucky ones - Jack's tumour was low grade - and following five years of scans he is now scan free and living a normal healthy life. Read more
James CamplingAs an experienced Aeromedical Evacuation specialist for the Royal Air Force, Corporal James Campling, 28, was expert at keeping a ‘cool head’. However, whilst awaiting the formal diagnosis of what turned out to be a grade 4 glioblastoma multiforme, James couldn’t help fearing the worst. He has been fighting the disease head on and has climbed the Yorkshire Three Peaks only 3 months after undergoing brain surgery, raising thousands of pounds for Brain Tumour Research.
“I checked my phone and saw a flurry of missed calls from my GP, which is rarely a good sign for anyone! When I eventually managed to speak to her she told me I had a brain tumour. My world instantly fell apart.” Read more
James CrossleyLife was turned upside down in August 2000 when James, aged nine, was diagnosed with a brain tumour and underwent two huge operations. After the last operation he was left with weakness down his right side, severe speech problems, as well as educational and visual difficulties. Today, James’ story is one of hope as he overcomes his disabilities and looks to a more independent future. Read more
James HinniganNew dad James Hinnigan was enjoying life with his partner and their son in Australia when he was diagnosed with a low-grade glioma brain tumour. The family moved back to Greater Manchester just before Christmas 2015 to be near friends and family as they faced the uncertain journey ahead. James mobilised thousands of people across the region to sign an e-petition calling for more funding for research into the disease which is the biggest cancer killer of the under 40s. He has been accepted for a clinical trial and is waiting for a date for surgery and looking forward to the birth of his second child in May.
“I do have bad days of course where I feel down and panic about what might happen but, on the whole, I am positive and always try to remember that there is someone, somewhere, who is worse off than me. This is the hand I have been dealt and I have to get on and play the game.”
Jay WheelerAlthough Jay's brain tumour was completely removed during surgery, he then had to undergo radiotherapy and chemo, leaving him with a number of different side effects. Despite his agonising ordeal he is looking forward to starting his degree course in Animation and Special Effects Read more
Jess RichardsonHard working wife and mum Jess Richardson was used to managing on her own while her husband worked overseas. He missed out on the birth of their daughter Isla but was airlifted home when, out of the blue, Jess was diagnosed with a brain tumour. Now on a clinical trial and awaiting Gamma Knife surgery, Jess hopes to reach out to other mums through her blog about living with a toddler and a brain tumour.
“Now, with the great gift of hindsight, it’s hard to imagine how I could have been so calm about things. Darren was away, I had a nine-month-old baby to look after but it never really crossed my mind that something might be seriously wrong. I had an MRI scan the first week in February and the call that changed our lives came the following day. You know where you think to yourself ‘knowing my luck I’ll find out I’ve got a brain tumour?’ Well, that’s what happened to me and it’s no joke. I was at home on my own late on a Friday evening when the consultant called to say they had found something on my brain and I needed to see my GP immediately. Darren was in Iraq and I sat with Isla on my knee as a doctor I had never met before told me I had a brain tumour. The doctor said he shouldn’t have been the one to tell me the news but, believe me, hearing the news has to be far worse than telling someone.” Read more
Jess TaylorJess was just 13 years old when she was diagnosed with a brain tumour. She has endured two craniotomies and numerous rounds of chemotherapy and radiotherapy. Despite her poor prognosis all those years ago, with the help of her neurosurgeons and doctors, Jess is now 19 years old and studying at college to become a beautician. Read more
John StuartJohn had an operation to remove his brain tumour in 2004 and ever since, his scans have revealed no evident tumour. He feels very lucky, not only to have survived, but to have been able to rebuild his life and return to work, albeit not in the same capacity as before. Read more
Josie PhillipsIt took doctors five years to diagnose Josie with a grade 2 astrocytoma brain tumour. Four years later and a year after graduating from Medical School, Josie faced the devastating news that the tumour had become malignant. After two craniotomies, chemo and radiotherapy, and a round-the-UK sailing challenge to raise awareness, Josie, has had clear scans for the last five years. Now the mother of two young girls, Josie is determined to live life to the full for as long as she can.
“I am very conscious of how little is known about brain tumours and how there needs to be a huge amount more research into what causes them, how to prevent them and, of course, how to treat them.” Read more
Julie BasleighJulie lives in Redhouse, Swindon, Wiltshire and is 38. Her father, Richard Flippence, was diagnosed with a glioblastoma multiforme brain tumour (GBM4), but it was already too late for him to have treatment and he died four months later, aged 63. Just nine years later, Julie herself was diagnosed with a benign brain tumour. Only too aware of what had happened to her dad, she resolved not to watch and wait for her tumour to become malignant, but to have surgery to remove it as quickly as possible. Tragically, even before she had surgery, Julie discovered that the tumour had upgraded to a GBM4, just like her father.
“Although I was told I would be fine, I knew that even a low grade tumour meant a lower life expectancy. I already had more knowledge than most people about brain tumours – I had lost my Dad to a GBM4 in 2005 when he was 63 and I was only 28.” Read more
Kate HickmanKate Hickman, 35, had been feeling tired and run down for a while, when she suffered a sudden seizure in June 2016. Thanks to the concern and persistence of her friends and husband, she was finally given a brain scan where they discovered a “massive shadow”. Kate went through surgery, chemotherapy and radiotherapy and her treatment is still ongoing.
“At the moment, my impression is that this next lot of treatment might be enough. I want to stay positive and most of the time I succeed, but some of that is just a front. I certainly have moments of despair… I feel I just have to try and crack on.”
Katie SmithSpecial needs teacher Katie Smith, 31, was struck down with debilitating headaches just weeks after returning from her honeymoon. After numerous visits to the doctor and hospital appointments, her symptoms were finally diagnosed as a brain tumour and Katie was given the agonising prognosis that she may not live to see her 40th birthday. Together with her mum who is battling Non-Hodgkin lymphoma, Katie has written a bucket list and has been able to cross off “publish a book” after winning a children’s writing competition launched by ITV’s Lorraine Kelly. Together with husband Luke, she is facing a dilemma over whether to go ahead with their plans to start a family.
“I feel we need something to live for but do I really want to bring a child into the world knowing that, potentially, it’s going to lose its mum at a young age? Or perhaps we should try to live our lives the way we would have done had we not known about the brain tumour. In order to protect the unborn child, you can’t have an MRI scan until you have passed the 12-week mark. The hormones of pregnancy could cause the tumour to grow and, if it came to it, would I choose myself over my baby? It is impossible to imagine, although I know what Luke would say. I had always imagined myself with three kids but now we will be lucky to have one. It is a very tough decision and one which we will make together.” Read more
Kelly Ann AlexanderDevoted to her husband and her horse, Kelly Ann was turned away from A&E when her brain tumour symptoms were dismissed as the effects of too much drink. Eventually diagnosed with a low-grade tumour, Kelly Ann has been through surgery and had part of her skull replaced when a serious infection threatened her life. Now 39, Kelly Ann knows that her tumour may return but for now, she is back in the saddle and making the most of each day.
“My latest scan in December 2016 showed there was no regrowth of the tumour. I live with the knowledge that my tumour could come back but I’m determined to make the best of every day and, with Kevin and my beloved horse, I know I can put on a brave face. My tumour was ‘low grade’ so, in many ways, I have been lucky. Although I have been through a very traumatic experience and have been left with mild weakness on my left-hand side, many others fare far worse.”
Kelly LeeKelly was newly-wed and just 29 when she was diagnosed with a tumour on her pituitary gland. It was successfully removed during surgery but she estimates it took a full three years for her to recover completely. Kelly’s sister, Olympic swimmer Katy Sexton MBE, was among family and friends who helped Kelly through her illness. Katy is now organising fundraising events for Brain Tumour Research through her swimming academy.
“Being diagnosed with a brain tumour has changed my life for the better. It has strengthened my marriage, increased my confidence and motivated me to start my own business.” Read more
Kerri ParkerKerri Parker, from Dereham, Norwich runs The Kerri Parker Model Academy helping thousands of aspiring models start out or further their modelling careers. Kerri herself is an award-winning model and has competed in pageants around the world. She was diagnosed with two different types of brain tumour during the winter of 2013 just before her 30th birthday. Read more
Kian JonesThe life of schoolboy Kian Jones was saved by his mother’s determination to pursue an accurate diagnosis of her son’s headaches and sickness. Trainee nurse Sabina’s relentless demands for a brain scan proved her instincts were correct. Kian’s condition was life threatening and he underwent emergency surgery. He is now settling back into “normal” life. Read more
Leah MartinLeah was diagnosed with a high-grade medulloblastoma brain tumour at the age of two. She has undergone several operations and a gruelling regime of high-dose chemotherapy and radiotherapy. Now at pre-school, Leah has long-term side effects including problems with her speech and mobility.
“Our little girl was so diminished by the treatment that I pleaded with her consultant not to go ahead with the last two sessions. I felt I could no longer put her through the daily ordeal of a general anaesthetic, of being taken from my arms and laid down on what seemed to me to be a cold slab, and pinned down by a face mask. In the end, I felt we had to trust the doctors and Leah did complete the course of 31 sessions over six weeks. For Leah it was normality and she probably assumed everyone did it; it was worse for us.” Read more
Lily HawkinsLily’s Mum, Lorraine is a trained and experienced midwife, but nothing could prepare her for the day when her six-year-old daughter was diagnosed with a brain tumour, many months after she first started displaying worrying signs which were repeatedly dismissed by doctors. Now Lorraine is determined to raise awareness particularly of the symptoms of brain tumours to ensure that patients are given the earliest possible diagnosis. Read more
Lisa BrassingtonSince being diagnosed with a brain tumour in February 2011, Lisa has decided to live life to the full. She has been skiing, is learning to sail, is taking acting classes and has even been on TV as an extra in Emmerdale. The location of her low-grade oligodendroglioma brain tumour meant it could not be fully removed by surgery. A recurrence of the tumour meant Lisa was back on treatment in the early part of 2017.
“During my brain operation, I played on an iPad so the surgeons could see how what they were doing affected my eyesight, speech and recognition. The location of my tumour meant it could not be fully removed and now my ‘loft lodger’ as I call it is growing. The prognosis I have been given is to expect to live for three to five years but this is just statistics and something which I do not dwell on. There are so many things I would like to do and I have decided to live life.” Read more
Lisa MeenanLisa was just 21 when she was diagnosed with a brain tumour. The shock news came as she and her family were coming to terms with the loss of a seven-year-old cousin to the same disease. Lisa underwent surgery and treatment, went on to graduate with a degree in architecture and took up Bollywood dancing a few years ago.
“In a way, being diagnosed with a brain tumour has been the worst thing and the best thing that has ever happened to me. I have had such a happy ending to my brain tumour story but nobody knows what is around the corner or down the road. I have learned that you can’t assume you will live until you are in your 80s or 90s and facing your mortality at such a young age is life-changing. It has taken time to come to terms with these experiences; I am now able to accept this as part of my life’s journey.” Read more
Luke DustanLuke had been suffering from headaches and seeing flashing lights. He discovered he had a brain tumour when a university colleague conducted an MRI scan. Currently undergoing chemotherapy, Luke, aged 29, is about to complete his PhD in neuropsychology. He has a twin brother Alex, and a sister Hayley. He lives in South Molton, with is partner Julia. Also supporting him is his mum Angie, who lives in Plymouth. Read more
Lyra ColeLittle Lyra Cole was just five months old when she underwent emergency surgery to remove a brain tumour. Initially misdiagnosed as a virus, Lyra’s symptoms had included loss of appetite and vomiting. The surgery was successful but, within months, she was struggling to see. Happily a second procedure restored her sight. Read more
Maisie DruryMaisie Drury was diagnosed with a brain tumour in 2007 when she was just two years old. Her parents, Vanessa and Ollie, describe their experience of Maisie’s diagnosis, treatment and recovery.
“As a parent you never expect your child to get a brain tumour, but it can happen. There are so many children out there who do not get diagnosed early enough and whose symptoms are often missed. More children die of brain tumours in the UK than from any other cancer. We think of those children and families every day and are working to support the brain tumour cause in whatever way we can.” Read more
Marian DyeMarian Dye first started to get symptoms in 1988. For nine years she visited doctors who put her headaches down to a variety of reasons. Finally in 1997 she was diagnosed and in 1999 she had an operation to remove a brain tumour. Since then she has lived a full life caring for her deaf and blind husband, going to work, in addition she is also a school governor and spends a lot of time with her granddaughter.
“Most people don’t understand, and what’s more, don’t want to understand how either living with a tumour or having had a tumour, affects you both emotionally and physically. It also impinges on your family and friends, without their help and support you can’t continue.” Read more
Matthew StrideMatthew Stride, 27, popped the question in October 2016 during the holiday of a lifetime to Dubai. His girlfriend Sarah, described it as the “perfect proposal” and said yes. Matthew’s parents were in the Middle East along with his sister and brother and their partners to join the celebrations. A year earlier Matthew was diagnosed with a cancerous brain tumour and told he could have as little as five years to live. Now, he and Sarah are determined to make every moment count.
“Although we had only been together a few months when I was diagnosed, Sarah has always stuck by me and been the most amazing support through everything. She is the one I want to spend the rest of my life with – however long the rest of my life might be. When I dared voice a doubt about whether it was right for me to ask her to commit to marrying me when I have limited time she told me not to be stupid. I think we would have got engaged in due course anyway but living with a brain tumour helped to speed up the process. We hope to marry in 2018 and Sarah is already planning the day.” Read more
Meg HillMeg was aged 19 and about to begin a new life at university when she was diagnosed with a malignant brain tumour. She was operated on in Boston, USA, having been deemed inoperable in the UK and is now married and living life to the full. Read more
Melanie HennessyHaving suffered with headaches for many years, Mel discovered she had two meningioma tumours just a few weeks after she gave birth to her daughter, Daisy Boo. She has lost the sight in her left eye, but is just thankful to be alive. She wants to do anything she can to raise awareness and funds for research into brain tumours.
“It’s been a really tough time, but I have met some wonderful people through having my tumour and I am very lucky. I am alive, aren’t I? I look at my daughter every day and I just feel so lucky to have her. Having a brain tumour makes you open your eyes more and appreciate life. You have to go through the bad stuff to appreciate the good.” Read more
Melissa HugginsMelissa is a twenty-eight year old primary school teacher with a Grade III Anaplastic Ependymoma brain tumour and further tumours in her spine. She was diagnosed in 2005 after many years of not knowing what was wrong. In 2009 with the help of her sister, fiance and friends she raised £250,000 to send her to Boston, US for proton therapy to shrink the tumour. She has since had chemotherapy and radiotherapy and is back teaching at school three days a week. Read more
Naomi SavageNaomi was a blue-eyed, golden-haired four-year-old when she was diagnosed with a brain tumour in 2007. She was due to start school that year when her life and the lives of her parents were turned upside down by this horrible illness. Naomi is now 11 years old and will start secondary school later this year. 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
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
Oli HilsdonOli grew up in Buckingham, attending Bourton Meadow Primary and the Royal Latin Grammar School. He was a keen member of Buckingham Rugby Club and enjoyed running to keep fit. Oli left the Latin with A’ levels in Maths, Further Maths and Economics and then went on to Cambridge University to study Economics, where he was also able to continue playing rugby. He now works for Blackstone, an American Private Equity company in London. 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
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
Richard PrestonRichard Preston was diagnosed with a glioblastoma multiforme (GBM) brain tumour which was discovered after he began suffering persistent headaches. He underwent surgery to remove a tumour the size of a large apricot which was located behind his left eye. Radiotherapy and chemotherapy followed. In March 2014, Richard, 45, married Wendy, his partner of 25 years. Read more
Ryan SmithAn increased intensity of headache and vision problems at the age of 29 led Ryan Smith to think something might be wrong. Although his GP was initially dismissive, a large oligodendroglioma tumour was discovered in his brain after a specialist examination of his eyes.
After overcoming five surgeries, radiotherapy and chemotherapy, as well as other health issues including memory loss, Ryan still remains hopeful and continues to fight his disease.
“I just want a cure to be found and soon, because the children and I can’t imagine life without Ryan.”
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
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
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
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.”