In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Aaron IrvineAaron was first diagnosed with a brain tumour at the age of two and a half, but not without his mother having to fight for six months to get doctors to take his symptoms seriously. The operation and subsequent radiotherapy left him with lots of physical and educational disabilities, but he got on with life and never complained. At the age of 29 his tumour came back – his mother (who has her own disabilities) had to fight to get any support for him. Aaron passed away five months later in 2011. Read more
Aaron WoodStudent Aaron Wood died at the age of 24, four years after being diagnosed with what was thought to be a low-grade brain tumour, which later turned out to be a grade 3 anaplastic astrocytoma. He had undergone surgery and radiotherapy, and went back to uni to complete his studies to graduate with a 2:1 in philosophy. His dying wish, for scientists to use his brain to further their knowledge of brain tumours, was fulfilled. His mum Crystal hopes that his story will inspire others to never give up.
“Aaron saved my life before he was even born. I had a car accident when I was four months pregnant and it was a wake-up call, the moment I realised I had to start taking care of myself for the sake of my unborn child. A brain tumour robbed Aaron of the prime of his life and robbed me of my sunshine. It is so painful to think he saved me by giving me something to live for and yet, 24 years later, I was unable to save him.” Read more
Abigail LightbownThe first signs that there was anything wrong with our daughter began around the end of August 2010 when Abigail started being sick every morning. Doctors prescribed a number of different medications to treat her for acid reflux, but none seemed to help and, by the middle of October, she had lost over half a stone in weight as her appetite had diminished. It was at this point that we did briefly consider whether she had an eating disorder and even chased her upstairs on one occasion to check whether she was making herself sick.
Over the following weeks and months, Abigail underwent a series of tests, including a comprehensive examination of her eyes, but all came back clear, even the eye test, which can be a key method for indicating the presence of certain types of brain tumours.
Finally, an MRI scan was booked for 18th February 2011, but not long before this was to happen, Abigail collapsed and was taken to Bolton Royal Hospital. Doctors performed various manual dexterity tests on Abigail which all came up as normal and as the scan was booked for a few days later they decided to wait. It was only then, at the age of nine, that she was finally diagnosed with a medulloblastoma brain tumour, around 20 weeks after we first had taken her to the GP about her vomiting.
Adam BarclayAdam and Emma met through their mutual love of cars. They had settled down with two small children, were happy at work, very much in love and engaged to be married. Despite numerous doctor’s appointments and hospital visits, Adam’s symptoms were repeatedly dismissed. By the time his brain tumour was diagnosed it was too late. He had several massive seizures and underwent emergency surgery. Adam died on New Year’s Day 2016 without regaining consciousness. He was just 27.
“Adam’s symptoms were repeatedly dismissed as nothing serious. As the brain tumour grew, he had a series of massive seizures. He went into surgery but never woke up. We had been planning our wedding but now I’m alone at 24 and my children are left without their daddy. Our lives have been destroyed and it is all so unnecessary – had he been diagnosed earlier he would still be with us now.”
A farmer and keen hunting man, Adam was diagnosed with a high-grade glioblastoma multiforme (GBM) brain tumour. Surgery was not an option and he underwent chemotherapy and radiotherapy but passed away at home 11 months later, at the age of 42.
“Somehow Adam found the strength to cope. He was a trooper and his concern was always for others. His tumour was a grade four glioblastoma multiforme (GBM), the worst it could possibly be. I don't think Adam really knew how high-grade his tumour was, but he was aware that it was inoperable and the prognosis was bleak; he had probably just two years to live, five years at best. Radiotherapy and chemotherapy began and that took us up to March and he lived for just two months after that.”
Our first born child, Aidan, was just 16 months old when he first became ill. He was diagnosed with a variety of different infections, but five weeks later we were given the horrific news he had an aggressive medulloblastoma brain tumour which had also spread into his spinal cord. Aidan was given the best treatment options available at the time and fought a brave battle, but despite everything, we still lost him just one month shy of his fifth birthday. Now we want to raise awareness and help prevent other children from having to face a similar fate.
“Research into paediatric brain tumours and how to treat them effectively is the only thing that can save the lives of other children like Aidan. A greater understanding of how the different tumour cells develop, as well as discovering more effective treatments that target those specific cells, will not only reduce mortality, but will also improve the quality of life of children who survive brain tumours.”Read more
Gloucestershire husband, father, and grandfather, Alan Davis, was 67 when he was diagnosed with a grade four glioblastoma multiforme (GBM) brain tumour, after suffering from memory loss, and problems with his balance. Due to its size and location, surgery wasn’t an option and an intense course of radiotherapy was prescribed. Unfortunately, the treatment didn’t help and Alan died in January 2009 less than six weeks after his diagnosis.
“It was early November that year when I remember having this one conversation with dad and he just couldn’t get his words out. The quick-witted, articulate and confident man I knew was not the man that was talking to me and that’s when I insisted on taking him to the GP as this wasn’t right.”Read more
Alan NeedhamSadly, Alan passed away on 2nd January 2018. This story was written before his passing but will be updated fully at a time appropriate for his family to whom we send our sincerest condolences.
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.”
Alison PhelanThe year 2000 approached - a new millennium and a new beginning. New years always made me sad, looking back at our happy life wondering what was ahead.
In May I became unsettled but didn’t know why, when my life was so complete. Then I became aware that Alison had developed a subtle incomplete movement in her eye that only a mother would notice. I took her to the doctor who referred me to an optician who said it was common and would correct itself.
Gary and I would talk and talk about it. I knew something was wrong. I went back to the doctor then to another optician. “Please someone listen to me”. I started to make Gary nervous. He knew I knew the children so well.
I went to a third optician - Gary was on a school trip with one of the boys but I went on the spur of the moment. I hated this feeling in my stomach telling me to act and act now!
They did test after test, and then told me to go to A&E with a letter that something was making the muscles in her eye deteriorate. Gary was only 5 minutes away; we dropped the boys off and went to the hospital. They said they couldn’t see anything but told us to go to a leading eye hospital the next day.
Amita CharavdaAlong with her husband Mahendra, Amita had owned a shop called “Lucky Jewellers” on Belgrave Road – Leicester’s Golden Mile for nearly 40 years. She was looking forward to enjoying retirement and having more leisure time to spend with family and enjoy lovely holidays. Tragically, she passed away from a brain tumour, aged 55, just three months after diagnosis.
Here is Amita’s story as told by her daughter, Sneha…
“The speed in which we lost Mum was so shocking. I couldn’t believe that in this day and age Mum could have something which was incurable.”
Andrea ThursfieldAndrea passed away just nine months after being diagnosed with a grade 4 glioblastoma multiforme (GBM) brain tumour. She was 46. The mother of a teenager and much-loved partner of Nick Butler, she underwent surgery, chemo- and radiotherapy but could not be saved. She and Nick had a short-lived romance as teenagers and then met again by chance 21 years later.
Nick tells Andrea’s story …
I first met Andrea when I was 19. We went out a couple of times but then I went away to work and we lost touch. More than two decades had gone by and we had both had our 40th birthdays by the time we met again by chance in July 2005. We bumped into each other in a pub. I had always hoped that somehow, somewhere, I would see her again but had no idea what she was doing or where she was. It turns out that, unknowingly, we lived very close to each other in Perton, Wolverhampton. She tottered over on her heels and we chatted, it ended up with her inviting me round for a cup of tea and she said: “Don’t cock it up this time!” It seems we both held a candle for each other after all that time. She had a young son, Ryan, from a previous relationship but neither of us had married. Things moved on and we each sold our houses in order to buy a property together to make a home for us and Ryan.
Angus AnthonyIn 2008, Angus was working as a police officer at Scotland Yard. He walked into a post at the railway station and afterwards had a severe headache which progressively got worse. We suspected a haematoma and were referred for a scan at our local hospital. In fact, the news was much worse – it revealed that Angus had a brain tumour. Angus was only 41, a husband and father of two young children.
Since the initial diagnosis, we also had to come to terms with the fact that Angus had a very rare and very aggressive cerebral lymphoma brain tumour. There are only about seven cases across the UK and 30-35 in the whole of Europe. Almost nothing is known about cerebral lymphomas because they are so rare - so there has been no research into how to treat them. Angus was offered drugs which had not been previously tested.
Anna Olivia HughesAnna was diagnosed with a brain tumour in February 2005 and following a 7-hour operation to remove it she underwent an intensive chemotherapy programme at Addenbrooke's Hospital in Cambridge. For 15 months she spent every other week in hospital but sadly, like the majority of children diagnosed with brain tumours, Anna lost her battle and passed away aged 3 years 8 months.
Diagnosed with a brain tumour at the age of 23, Anna Swabey was intitally given just months to live. Under the care of neurosurgeon Kevin O’Neill, who leads the Brain Tumour Research Centre of Excellence at Imperial College, London, Anna had surgery and treatment. She also got engaged and shared her experiences through her blog Inside My Head. Anna passed away on 16th September 2016, the day before she was due to marry.
“I am fortunate in that I don’t feel my illness dictates my life and while I am most definitely the same person, I even feel as if I am a better person for it. I know this may sound odd but my diagnosis has made me view my life differently and the way I am choosing to live now leaves me feeling fulfilled. I love knowing that I can make a difference, and, potentially help others.”
Annie HughesAnnie had severe speech and language difficulties which meant that she had to attend special schools from the age of six. Despite her problems, Annie was a ray of sunshine and made friends wherever she went. On leaving school she found herself a job, met her future husband and started a family. After all the early adversities, it seemed that Annie’s life was to have a fairy tale ending…
“As a family, we are all united in a desire for Annie’s legacy to be that fair amounts of funding are dedicated to research into brain tumours. We want there to be hope, not despair, for other people who learn that a member of their family has been diagnosed with this devastating disease.”
Arthur BoydArthur was a fit and healthy man and a loving husband and father to his three sons. He had a strong Christian faith which was a huge source of comfort and strength not only to him, but his whole family when he was diagnosed with a brain tumour just before Christmas 2015. He died just short of six months later, aged 69.
“I was aware of brain tumours, but had never equated them to brain cancer until Dad was diagnosed. I spent an inordinate amount of time researching treatments such as electric therapy in Germany, as well as immunotherapy trials, but it was soul-destroying not to be able to find anything available to Dad no matter how hard or far we looked.”
Ashley ShameliAshley Shameli was 22 and training to be a solicitor when he was diagnosed with a grade two astrocytoma brain tumour after suffering a massive epileptic seizure. He underwent several operations with the pioneering brain surgeon Henry Marsh and endured gruelling chemotherapy and radiotherapy. He lived for another eight years and died aged 30, leaving his beloved mum Jeanette, his dad, his older sister Shardi and younger brother Shervin.
“When Ashley was born I was six-and-a-half. I remember being so proud to be the big sister of such a beautiful, happy little boy. My other brother, Shervin, was born a year and half later. The three of us were exceptionally close as children and lived together when we moved to London. I will never forget Ashley’s beautiful smile, his cheeky dimple, his twinkling eyes and his kindness. He adored his family and we adored him.”
Aurora ProvenzanoAurora was just six years old with her whole life ahead of her when she was diagnosed with a brain tumour. She fought a brave battle for three and a half years, but sadly lost the fight, leaving her parents and two sisters, Isabella and Chiara with a huge hole in their family.
Aurora only ever had one fit and that was it - she was otherwise completely healthy. Yet in 2006 we found ourselves at our local hospital where an MRI scan revealed Aurora had a brain tumour. When Aurora was diagnosed it felt like I was having an out of body experience. I was pregnant with my third daughter and it seemed like I was looking down at myself, not knowing what to think.
Barry Albin-Dyer OBE
When respected Bermondsey undertaker and family man, Barry Albin-Dyer OBE, started seeing zig zags in front of his eyes, he could not have guessed that a scan would reveal a very aggressive brain tumour near his optical nerve. Determined to survive and be a “Bermondsey boy for years to come”, he underwent gruelling treatments, documented his battle in his blog, and sadly died less than two years later.
“Barry, being Barry, was determined to keep going in to work every day he could. “I’ve got to keep on going,” he would declare, “or I’m a dead man.” Barry had a strong will and a strong Catholic faith, and two those things helped him get through it. He never wanted the cancer to take him over and stop him doing the things he loved. I’ve always thought that was what kept him alive for as long as he was.”Read more
Becky had been suffering with increasingly bad headaches and then vomiting for about 3 months and it was starting to get worse. The doctors missed the signs and failed to diagnose a brain tumour, but I don’t blame them. The outcome would have been the same.
Eventually in May 2009 she collapsed and was taken to hospital where a scan indicated a brain tumour. We were given the official diagnosis on Becky’s 39th birthday – 28th May. She had a glioblastoma multiforme with a prognosis of 12 to 14 months. The neuro-surgeon was unable to get the entire tumour out and said that it was the most aggressive one he had ever seen
Ben WhitehouseBen Whitehouse was travelling on a train with his girlfriend Rachel when he suffered a severe seizure. He was taken straight to hospital where he was diagnosed with a high- grade glioblastoma brain tumour. The couple were married in Hampshire in April 2012 and just days after they returned from honeymoon in Cambodia, Ben became ill once more. He passed away three years after his diagnosis. He was 34.
“We had been married for just 15 months when Ben died. I never imagined that after such a short time I would be on my own. In those last few weeks when he was so ill we talked a lot. He deteriorated so fast but I kept talking to him although I don’t know how much he understood or even heard. Life is still hard but at least we had the chance to say goodbye.”
Beverly LawrenceLife and soul of the party and adored grandma, Beverly Lawrence, died shortly after her 60th birthday in 2013. It was only two years after she retired and was, almost immediately, diagnosed with a grade four glioblastoma multiforme (GBM). Hayley Costa lost her mum Beverly just five days after she gave birth, horribly reminiscent of Beverly losing her own mother while pregnant with Hayley.
“She was away with the fairies a lot of the time. We were living some kind of black comedy. I remember her handing me imaginary tissues and I would have to take them. The next moment, she would snap back to herself, sobbing: “Look what’s happened to me!””
Bill FoulkesBill grew up on the Hamble River in the family boatyard, so it was hardly surprising he had a passion for the River, nor that boats were in his blood. He started a chandlery business called Aladdin’s Cave on the Hamble over 40 years ago and ended up owning all the chandleries on the River.
Later in life he discovered golf and it became a great source of enjoyment for him. He organised a Golf Day each year for the Marine trade, which we revived last year after a two year absence.
Brian lived in Gressenhall near Dereham, Norfolk and was a great family man and a wonderful husband. He had three children – Camilla from his first marriage and Rosie and Tom from our marriage. He cared deeply about each one of them and was particularly protective about Camilla who suffered badly with asthma and eczema from an early age. Brian was diagnosed with a rare lymphoma brain tumour and passed away almost a year later, aged 62, on 23rd September 2006.
Here is Brian’s story as told by his wife, Sally…
“Brian knew he was going to die. There were still lots of things he wanted to do, but he was at peace with himself, which was a huge comfort to me. We used to sit together in the garden and he would tell me everything he wanted me to do with the children and his businesses after he had gone. He was an amazing man, even in the last year when he was dying.”
Carol CooperCarol was a much loved sister and daughter and mother of grown-up twin sons, Simon and Mark. She had a really caring nature, so it was hardly surprising that for over 20 years she worked with the mentally ill. But, at the age of 53, within the space of six short weeks, Carol was diagnosed with a brain tumour and passed away.
Here is Carol’s story…
“When Carol passed away, I was shocked at how many people develop brain tumours and how many of them are children. I have since visited the Brain Tumour Research funded research centre in Portsmouth and discovered how underfunded research into brain tumours is and the cost of everything – particularly all the extremely complex, technical pieces of equipment…
“I have chosen to support Brain Tumour Research as my charity of the year and would like to be able to sponsor a day or MORE of research and put the Tangent logo and Carol’s name on the Wall of Hope and help to build on the number of brain tumour research centres throughout the country.”
Caroline CroninMarine biologist Caroline Cronin’s biggest wish after being diagnosed with a terminal brain tumour was to get back to work. There were two things she felt she still wanted to achieve – to get married and have a baby. She defied expectations to achieve both and the family were able to spend precious months at home together before Caroline passed away in October 2013 at the age of 32, leaving her husband Marcus and their six-month-old daughter Florence.
“The few times that Caroline allowed anyone to see her upset about her condition was when she worried about how her illness affected others. We both desperately wanted to be married and felt blessed to have a baby together. The grieving process takes a long time but knowing Caroline was able to do the two things she most wanted makes it a bit easier. We had been through so many very difficult times together and, when Caroline died, I was just grateful that it was as she had wished. I held her hand as she passed away at home. The first thing I did was to hold Florence and, in a way, it meant I didn’t feel as if I had lost Caroline completely as I had our baby.”
Caroline FosterCaroline was initially diagnosed as having depression (which was something she had suffered before) and then a breakdown. Her husband, Andy, first noticed something wrong after Christmas when Caroline just didn’t seem herself, wasn’t focusing on things and wasn’t caring for herself.
By the time Caroline became incontinent, she was assessed by health workers and was admitted to a psychiatric hospital, where she spent a week before having to leave as the hospital couldn’t provide the level of care she needed - by then she was unable to do anything for herself and even had to be moved with the use of hoists. There had been no improvement in Caroline’s condition, even with medication and therapy.
In August 2014, a CT scan revealed that Cat, aged 36 and the mother of Robert, 15, had a brain tumour. Following surgery and a biopsy, the devastating news came back that the tumour was in fact cancerous – suggestive of a metastatic spread, but, on a positive note, was a grade 2, slow-growing type of tumour. Just a few short months later, with Cat experiencing headaches again, further surgery revealed the earth-shattering reality that the tumour had progressed from grade 2 to grade 4. Cat’s family and friends all rallied round to help and to fundraise, resulting in the setting up of a fundraising group called Cat in a Hat. Tragically, by the spring of 2017, Cat was no longer responding to any treatments available. She passed away on 14th June that year.
“I started to think Cat would beat the brain tumour or, if not, at least keep it at bay for many years due to her strength and positive attitude. I even found that Cat’s brain tumour wasn’t always the last thing I thought about at night or the first thing I thought about when I awoke.”Read more
Charlie Carter-BatesCharlie was six years old when he was finally diagnosed with a GBM4 brain tumour after months of “migraines” accompanied sometimes with projectile vomiting and instances of eye pain. His parents were told that his chance of survival was 25%, although they later found out that it was a lot less.
“The day of the scan was the day our lives changed forever and was the worst day of our lives so far… I remember the feeling of utter despair. I can’t even explain the feeling – it was the most horrendous pain.”
Christopher ToddHusband, father, and grandfather, Christopher Todd was 63 when he was diagnosed with an aggressive grade 4 glioblastoma multiforme brain tumour after suffering violent headaches and stroke-like symptoms. As he underwent surgery, radiotherapy and chemotherapy his daughter Vicky set about raising funding for research to help get him better. With the support of his family, Christopher fought his illness but passed away in hospital in November 2016 at the age of 65.
“When dad was diagnosed I just couldn’t understand how this could happen. How can so many people have brain tumours yet so little be known? I was flabbergasted to learn that brain tumours kill more children and adults under the age of 40 than any other cancer yet receive so little funding. How can it be right that just 1% of the national spend on cancer research is allocated to this devastating disease? I cannot sit by and let this happen so I set about fundraising for Brain Tumour Research to help my dad get better.”
Claire HollisterMy darling daughter, Claire, had her life cut short by a brain tumour - the very same disease which had killed my sister, Valerie, 10 years previously. Claire was just 30 years old when she passed away, just 14 months after diagnosis with a grade IV gliosarcoma.
“It was at this point I realised the “small lump” must be life threatening. It all felt so unreal - to go from everything being so normal and then there we were looking this deadly disease in the eye.”
Clive GathercoleHusband and father of four boys, Clive Gathercole was eventually diagnosed with a glioblastoma brain tumour after suffering months of health problems. He died in August 2012.
“In my anger I thought about complaining about the terrible care we received and the problems with securing a proper diagnosis, but I am not sure looking back at the past negatively is helpful, so instead as a family we are forging ahead with our fundraising plans to fund more research into brain tumours. I would hate to think of other families facing what we have been through, and think the lack of awareness of this disease is a tragedy in its own right.”
Passionate flat-green bowler Colin Shaw was 69 years old and 11 years into his retirement when he collapsed unexpectedly. Initially thinking it was a reaction to malaria tablets taken in preparation for a forthcoming holiday, he and his wife were shocked to learn that he had an aggressive grade 4 glioblastoma multiforme (GBM) brain tumour.
With a second tumour discovered nine months later, Colin lost his fight only 18 months after the first diagnosis, with his family all around him.
“If there is such a thing as a perfect death, Colin had it. We were all there, me and our three daughters, when he quietly slipped away.”
Danny HortonMy brother, Danny, was a healthy, sporty, fun-loving young man but in 2010 he passed away, aged 36, with an astrocytoma brain tumour. Just six months later in the same year, my wife, Maddie, lost her father to the same cruel disease.
“Danny passed away nine years after his diagnosis, aged 36
– yet another tragic example of the stark fact that more children and adults under the age of 40 die of a brain tumour than from any other cancer. He walked his brain tumour path on his own, living with a gun to his head.
It makes me think all the more of him.”
Darel BryanDarel was 33 years old and in the prime of his life when he was diagnosed with glioblastoma multiforme (GBM) in December 2014. Previously extremely healthy and active, it was a complete shock and devastating to his family and his beloved partner of 12 years, Natalie. Darel bravely fought this aggressive disease for 15 months, but sadly lost his battle on 26th February 2016.
“The clinical nurse specialists at the meeting told us not to look his diagnosis up… I was to discover that GBM is a monster; it is relentless and an utterly cruel disease. It not only robs you of who you are, it robbed Darel and me of our future together.”
Husband, father, and grandfather, Dave O'Donoghue, was 59 when he was diagnosed with a grade four glioblastoma multiforme brain tumour, after suffering from severe headaches. Though he underwent surgery and radiotherapy, Dave sadly passed away less than four months after diagnosis, missing his milestone 60th birthday by a matter of weeks. This year marks 10 years since his passing.
“After what seemed like hours waiting in silence for the consultant to arrive, he came in and did not delay giving the diagnosis. Dad had a grade four glioblastoma multiforme (GBM), a very aggressive tumour and it was going to end his life within the next three months. We all sat there in shock at the news we had just heard, trying to piece it all together. My mum fled the room in tears while I just sat there in silence with my dad. His only question was if he would make his 60th birthday on the 13th July. The consultant paused, shook his head and said ‘I’m so sorry’.”Read more
David FlockhartProfessor of Medicine, Genetics and Pharmacology and Director of the Institute of Personalised Medicine at Indiana University in the USA, David Flockhart devoted his career to pioneering breakthroughs against cancer.
Having lost his mother and cousin to glioblastoma multiforme (GBM) tumours, it was unfortunate when David found himself battling a GBM, a cancer where he felt that conventional treatment had not changed in 50 years. Knowing that his prognosis was poor, David wanted to communicate his medical knowledge widely, and through his broadcasting work, let others understand what it was like to live with the devastating effects of a brain tumour before he died.
“My brother was convinced that there had to be a genetic link, or at least a predisposition, to brain tumours in our family. Three of them, all in my mother’s blood line, diagnosed with GBM.”
David GrantSadly, David passed away. This story was written before his passing but will be updated fully at a time appropriate for his family to whom we send our sincerest condolences.
David 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
Husband and father-of-two David was just 39 when he died. He was initially diagnosed with a low-grade oligoastrocytoma brain tumour when his wife was 31 weeks pregnant with their first child. He underwent gruelling chemotherapy and radiotherapy and also had immunotherapy in a bid to arrest the growth of the tumour which over time changed to a grade four glioblastoma. He passed away in November 2016.
“David was dying and there was nothing more which could be done. He had been in 24 hour intensive care and now I was being advised to take him home and care for him myself. How was I to do that? Although he was terminally ill, at 39 David was too young for a nursing home and, ironically, not close enough to death for a hospice.”
David LeatherbarrowDave was just 34 and with two daughters aged five and two when he died from an aggressive glioblastoma multiforme (GBM) in January 2015. Previously fit and healthy, his wife Diane felt he was taken away from them bit by bit as radiotherapy and chemotherapy changed him physically and mentally.
“Jessica was just a baby but it was so hard for Charlie and I tried to explain that daddy’s medicine was to blame. It got to the stage where not only was he behaving like someone else, he looked like someone else too. Dave was a big man, 6ft 1ins tall and toned. During his treatment he put on around five stones in weight and ballooned to around 19 stones. He needed all new clothes and even then wasn’t comfortable in anything. Despite this, he was still the person I loved more than anything and it was so hard to see him struggle with the physical and mental changes when, other than be there when he needed me, there was nothing more I could do.”
Dean WoodDean was a healthy man who worked hard (up to 60 hours per week) as a builder, and then enjoyed a drink and playing pranks. He loved his family and was very loyal to his friends – he had the same best friend since the age of seven. When Dean was 27 he was diagnosed with a glioblastoma multiforme grade IV which he fought with so much courage and his indomitable sense of humour; nevertheless he was cruelly taken from us just seven months later.
“Dean will always remain in our thoughts and in our lives and we talk about him daily. We don’t want to shy away from the scary parts of this illness; we want everybody to see how brave Dean was. We, as a family, promise to continue the fight against brain tumours in his honour.”
Diana FordIn the beginning Diana only had very vague symptoms like never seeming to have enough sleep, or having a bit of a headache. But as her youngest child, Finlay, was just two years old neither she, nor the family took it seriously. However, around Christmas-time, there were various odd things which didn’t seem to stack up. Diana seemed a bit vague, like she was not really listening, and not always understanding.
Then came a week when Diana felt quite unwell and stayed in bed. On the second day she got up to go to the GP who suggested she go to the hospital for blood tests, which she did with difficulty. By Friday when Diana was leaving cups of tea untouched and complaining she had such a headache, I became really concerned. I called the doctor and insisted he came out to her and I also called her husband, Nick and suggested he came home. I thought Diana was having a mental breakdown or was very ill.
Diane WrightMum was diagnosed with breast cancer in 2005 and fought bravely against this. Two years later, she was given the all clear. She continued to have annual screening and was always relieved with the positive results she continued to have. Read more
Donna OsbourneDonna was healthy, apart from problems with high blood pressure which she probably inherited from her mother’s side of the family. She had been going to see the GP about it, who thought it might be a thyroid problem.
On New Year’s Eve, 2007, we were with friends and Donna felt faint and dizzy, although she didn’t actually faint. We sat her down and did all the things you do when someone feels faint. There was even a lady on hand at the party who used to be a nurse. We then decided to go home as Donna continued not feeling too good. She woke up fine the next morning.
Duncan ScottDuncan was an extremely intelligent, kind and thoughtful man. He was an avid fan of Formula 1 and Le Mans. In June 2015 he was diagnosed with a grade 4 glioblastoma multiforme. After an 18 month battle, he passed away aged 55. During the last weeks of his life he endured severe mental torture until he was admitted to a hospice where doctors and nurses were able to adjust his medication to prevent him from suffering anymore.
Here is Duncan’s story as told by his sister, Gayle:
“Duncan’s passing has left a huge hole in my life, as well as the many people whose lives he touched. His funeral was extremely well attended with many people voicing how he had “changed their lives for the better”. It seems so unfair that he was taken in his prime with so much joy to have and to give. I miss him dreadfully.” Read more
Eddy KirbyWithin a fortnight of walking one of his two beloved daughters down the aisle on her wedding day, Eddy Kirby was suddenly taken ill and after tests he was diagnosed with an aggressive glioblastoma multiforme (GBM) brain tumour. It was inoperable and although he underwent treatment, Eddy’s condition deteriorated rapidly. He passed away, aged 64, on 7th March 2015, his late father’s birthday. In addition to leaving two daughters, Emma and Sarah, Eddy also left a partner Carol and his mother, Marjorie, aged 93. Read more
Elizabeth PerkinsA mum of three daughters and a busy PA for Croydon Council, Elizabeth’s symptoms were initially thought to be nothing more than sinusitis, but sadly turned out to be an aggressive and incurable brain tumour.
Despite two surgeries, chemotherapy, radiotherapy and a drug trial, Elizabeth lost her fight with the tumour two years later, her immune system unable to fight off a chest infection and sickness bug caught during her final round of chemo.
“The tumour changed her into a completely different person. The fierce, feisty woman that had brought me up was slowly turning into a passive pussy cat.”
Emma HalsteadMy stylish, creative, determined, positive, intelligent, adored, younger sister was diagnosed with a benign brain tumour in April 2012 when she was aged 19. She underwent a wide-awake craniotomy in November 2012. In July 2015 the tumour became malignant and aggressive and was diagnosed as a glioblastoma multiforme grade 4. Emma underwent chemo and radiotherapy, but nothing could save her. She was admitted to hospital in March 2016, just days after doing a sky dive for Brain Tumour Research. Several weeks later, there came a point when every time Emma moved she had a seizure. On 13th May 2016 she slipped peacefully away, aged just 23.
“Emma truly was an inspiration to us all. When she discovered she was ill, she adopted an attitude of: ‘I’ve got a tumour, but I’m still going to get on with life.’ This positive attitude was to stand her in good stead right up to the end. She was never afraid to ask tough questions and each time she received bad news she would quickly pick herself up and move on. One time she simply said: ‘Ok, pass me the grapes, let’s get on with it’.” Read more
The second of three children, Eva was just four years old when she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), the most deadly of all childhood brain tumours for which there is no cure. Faced with the bleakest possible prognosis, her parents fought to find treatment which would offer her more time. Sadly Eva passed away within a year, her severely damaged body succumbing to pneumonia.
“We have been plunged into this nightmare world where hardly any money goes into DIPG and yet this hideous form of brain tumour kills up to 40 children every year in the UK alone – that’s two classrooms full of infant school-aged kids. Like our daughter, these children are normal and happy until one day they fall over. Gradually their bodies shut down while maintaining complete cognitive awareness. They are fully aware until their arms and legs stop working. They become locked-in, a prisoner in their own shells – can you imagine anything worse for a fidgety and energetic five year old? Their young, healthy organs keep them going for much longer than an adult’s until, finally, they stop functioning. Our DIPG kids die a truly horrible death, slowly over months. And, as parents, we watch every minute of it with desperation and helplessness. The reality of DIPG is a living nightmare.”Read more
First-time parents Kelly and Marc Evans were overjoyed at the safe arrive of their beautiful baby daughter Evie on 9th March 2007. Their first sense that anything was wrong came when she was 18 months old. Eleven months later, after being examined in connection for repeated vomiting, a CT scan revealed a mass in Evie’s brain. She was diagnosed with an extremely rare Atypical Teratoid Rhabdoid Tumour (AT/RT), most prevalent in the under-three’s. She endured surgery and treatment but passed away, with her parents at her side, on 4th November 2009. She was just two-and-a-half.Read more
Fin ChurchFundraiser, karate black belt, Guinness world record holder and Child of Courage, Fin Church lost his battle with brain cancer at the age of 11. The eldest child of Penny and Wayne Church, Fin was also big brother to Kenzie and Tegan. In the 17 months after his diagnosis, Fin endured neurosurgery, chemotherapy and radiotherapy, taking part in trials including testing the efficacy of re-purposed drugs. In his final days, he dictated a letter in which he talked of his love for his family, his fondness of chocolate and curry, and his fear of losing the fight.
“I am ashamed to admit that there came a stage when I wished Fin had leukaemia. Surely that would be better, there were treatments and things would be OK wouldn’t they? Investment in research and increased public awareness meant leukaemia was no longer a death sentence. But where is the investment and subsequent improvement in outcomes for patients with brain tumours? As we fought as hard as we could for Fin, we were sickened to learn that the treatment for brain cancer is antiquated and barbaric, as cruel as the disease itself.”
Fiona ReidSadly, Fiona passed away on 11th December 2017. This story was written before her passing but will be updated fully at a time appropriate for her family to whom we send our sincerest condolences.
Fitness 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
Frank SmithMy brother, Frank, was 58 years old when we lost him to a brain tumour – two years and 10 months after he was diagnosed with a grade 4 glioblastoma multiforme.
“It seems so cruel that Frank died before his time, after all he went through during his life, losing his partner and unborn child, bringing up their two children alone, supporting Frank junior following his diagnosis with a tumour and then his very own personal battle.” Read more
Fraser CullenLittle Fraser Cullen was just three-and-a-half months old when he was diagnosed with an aggressive brain tumour. He underwent surgery and his parents Vicky and Warren had to make the agonising decision whether to put him through gruelling high-dose chemotherapy which might extend his life by just months or opt for palliative care. Fraser himself helped them to make their decision by smiling at his mum as she sat in Fraser's room with the consultant giving them the news. Treatment proceeded giving the family precious time but Fraser passed away a year later.
“At first, we were dismissed as over-anxious, told our baby had a sore throat and sent home. In fact, the situation was so grave that, with or without treatment, the brain tumour meant there was just a five per cent chance that Fraser would live to see his fifth birthday. Chemo could buy us time but not much, as little as a couple of months. As the country celebrated the New Year, we were making the toughest decision any parent could face. It was so, so hard. We didn’t want to put Fraser through chemo that wasn’t going to work but of course we didn’t want to lose him. As the doctors spelt out the options I looked over at Fraser and he smiled back at me. How could I give up on him?” Read more
Gaye ChaffeA former officer in the Metropolitan Police, Gaye Chaffe was diagnosed with an oligodendroglioma brain tumour in 1992. Her husband Simon supported her through two craniotomy procedures and subsequent treatment. The tumour spread to her brain stem and she passed away six years later in her husband’s arms, leaving two sons aged eight and three. Read more
George Michael HarrisonGeorge was diagnosed with a brain tumour at the age of 25. He underwent surgery and married his childhood sweetheart Georgina 13 months later. Sadly his tumour returned five years later. He had radiotherapy and chemotherapy which left him partially paralysed with double vision and memory problems along with other side effects. Together with Georgina, George’s mum Sondra cared for him during his last months. He passed away with them and his sisters by his side in June 2010. Read more
Georgie BeadmanGeorgie Beadman wife, mother, daughter, and sister, died seven years after being diagnosed with a low- grade glioma. She was a talented potter who loved music and the arts. In February 2015, Georgie died at the age of 41 leaving a husband and two small children.
“It is desperately sad to think that brain tumours kill more children and adults under the age of 40 than any other cancer and I was shocked to learn this area receives just 1% of the national spend on cancer research. A number of the girls who Georgie met during her year as a debutante are now involved in fundraising to support vital research into brain tumours which is wonderful. We were unable to help Georgie but I am sure that we can help others.”
A loving wife, mother and grandmother, Gillian built her life around creating a happy home for her family. She lived in the Trossachs and enjoyed the natural beauty of Scotland where her husband worked as a deerstalker with the Forestry Commission. At first misdiagnosed with multiple sclerosis, her anxious family were finally told she had a tumour of the central nervous system and she passed away six months later at the home she was dedicated to making.
Glendon SnapeSadly, Glendon passed away on 12th October 2017. This story was written before his passing but will be updated fully at a time appropriate for his family to whom we send our sincerest condolences.
Glendon Snape was looking forward to starting his honeymoon when he was struck with a terrible headache during the journey. Never setting foot in the hotel, Glendon, 51 from Preston, was instead rushed into hospital by ambulance from the hotel car park. The newly-weds, with four children between them, were devastated to hear that Glendon had a grade four glioblastoma multiforme, with possibly just months to live.
“When the doctors told me I had 14 months to live, my heart just sank and knowing more became an obsession; I just had to try to find a way out of the nightmare... It’s like an addiction but it’s kept me alive.”
Husband, son, father and step-father, Glenn McMahon was diagnosed with an aggressive glioblastoma multiforme stage 4 (GBM) brain tumour after experiencing co-ordination problems on the golf course. He married Wendy in February 2014 and, knowing their time together would be cut short, the couple set about making the most of their lives through travel, socialising and their mutual love of fine food. Glenn died in June 2015 at the age of 53.
“To be told it was a brain tumour was like being hit by a bus. Glenn asked straight away how long he had and was told the short prognosis. We were devastated. We had begun to suspect Glenn might have motor neurone disease and never dreamt it would be a brain tumour. We had both been married before and having found each other now faced our future which was going to be cut short.”Read more
Godfrey ButchersHusband, step-father and grandfather, Godfrey was laid to rest on what would have been his 25th wedding anniversary. His widow Shirley chose music from their marriage ceremony for the funeral which took place near their home on the Isle of Wight. Godfrey was 71 when he passed away just ten weeks after being diagnosed with a glioblastoma multiforme (GBM) brain tumour.
“A proud man, Godfrey didn’t want lots of visitors or people fussing around him. He was thinking of others and wanted to spare them the pain of seeing what was happening to him. Close family came and it was a joy to see the love in his eyes as our granddaughter, who was just a few months old, sat on the bed with him.” Read more
Holly Atkins Fooks
Holly was just 11 when she passed away in September 2017, less than two years after being diagnosed with a highly aggressive brain tumour for which there is no cure. She endured two brain surgeries; chemotherapy and radiotherapy, the maximum amount a child could be given. Her family was devastated when, despite treatment, the brain tumour grew back leaving Holly disabled and bed-bound.
“Holly always wanted to live in a camper van; she loved them, and so she travelled to the crematorium in a specially-converted camper van with pink streamers waving from the roof corners. We all wore something pink in her honour. Her casket was pink with rainbows and her floral tributes included a unicorn head. She went with her faithful Dolly and Doggy and we all sprinkled fairy dust over her casket as we said goodbye. We think she is out there somewhere in a special place, chasing unicorns and rainbows, riding ponies and making fun of us when we do silly things – just as she used to do. We will never forget her.”Read more
Holly TimbrellSadly, Holly passed away on 18th December 2017. This story was written before her passing but will be updated fully at a time appropriate for her family to whom we send our sincerest condolences.
Holly 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
Hugh WalkerHugh was 46 when he passed away on the 25th September 2013, just four months after diagnosis. We had been together for 20 years and married for 14 of them. Between us we had twins – George and Jasmine who were just eight years old at the time, while Hugh also had two grown up children – Joshua and Naomi from a previous relationship. We were all very close and remain so.
“During the four months Hugh survived following his diagnosis, he was a pillar of strength. He knew he was dying, yet he spent lots of time with me talking and passing on his strength. He told me his goals and what he wanted me to do with the children and for myself. He asked that he be cremated and buried under the apple tree in the garden and that a friend of his should make a bench so that we could sit there and be with him.”
Ian MeekIn 1995 Ian was diagnosed with a brain tumour. Married to Sally with three children, Ian counted himself one of the lucky ones because he survived so long. In 2009 the tumour turned cancerous and he had to undergo an operation to remove part of it and then undergo a fairly intensive period of chemotherapy whilst training for the famous three peaks challenge, which became known as Meek’s Peaks. Sadly Ian passed away on 1st August 2012 leaving a legacy of research at Leeds University having raised over £105,000.
Ian WalshFormer fireman and pub landlord Ian Walsh was taken ill at Christmas and, within a month, he was diagnosed with a high-grade glioblastoma multiforme (GBM) brain tumour. He passed away in August 2015, just four months after marrying his “soul mate” and long-term partner Glenda.
“The doctors tried to ensure he had the best quality of life for as long as possible. The day we got married was a bitter sweet occasion; you marry someone for life and I now realise we should have done it years ago. We had been together for a long time and kept putting it off, saying next year ...”
Ian was only 41 years old when he passed away, just three months after learning he had an aggressive glioblastoma multiforme (GBM4). His passion for riding and specifically the sport of eventing, led his widow, Kathryn, to establish the Ian White Memorial Trophy. This is presented each August during the Smith’s Lawn horse trials in Windsor Great Park to the best amateur event rider.
“Ian was then transferred to the John Radcliffe in Oxford where he underwent a biopsy – we had already been told that he wouldn’t have surgery because of the position of the tumour. Until this point we clung on to thinking that there would be some hope, but when we were given the results of the biopsy, that Ian had a high- grade glioblastoma multiforme (GBM4), we both knew this was it. We saw the consultant together. He was quite clear that Ian couldn’t be cured…”
Ieuan JonesBased in Dubai with his wife, Kelly, and a successful trainer for Emirates airline, Ieuan displayed very uncommon symptoms ahead of the discovery of his tumour.
With the devastating news that he had an aggressive GBM, Ieuan and his family relocated back to Wales, and he lost his fight less than two years later.
“That Christmas, I bought Ieu a star. We named it “Daddy’s Star” and we told Sienna that when he was no longer around, she could look up in the sky and the brightest star would be the one he was sitting on.” Read more
Jack D'LimaJack was only a toddler when he was diagnosed with a brain tumour but, despite battling for his life for more than eight years, he lost the fight. His parents feel consumed and suffocated by the emptiness they are left with, but they have to pick up the shattered pieces and rebuild their lives for the sake of their other two sons. Read more
Jacob James-PryceBaby Jacob was born on 29th November 2014, a second child for Julie and Andy and a beloved brother to Jessica who was just two. Initially diagnosed with a respiratory infection, Jacob’s condition deteriorated and he was admitted to hospital where an aggressive glioblastoma brain tumour was discovered. He underwent surgery but died two days later. He was just three months old.
“To lose a child is the worst possible thing and I wouldn’t wish it on anyone. We talk about Jacob every day, Jessica says good morning and goodnight to him and chats about him as she rides her bike, imagining he would be doing the same thing. We knew nothing about brain tumours before this happened. Now they are a part of our lives. It doesn’t make sense to think that brain tumours kill more children and adults under 40 than any other cancer yet just 1% of the national spend on cancer research is allocated to this devastating disease. Jacob had his whole life ahead of him. If anything good is to come out of this it will be that more money will be invested in research.” Read more
Jane Packer was busy revolutionising the world of floristry and raising a family when she was diagnosed with an aggressive brain tumour that turned out to be a glioblastoma grade 4. Following gruelling treatment, Jane was able to return to work and live a normal life until a stroke six years later heralded the return of the tumour. After she passed away in 2011, her husband, Gary Wallis, set up the Jane Packer Foundation in her memory.
“During the years of her illness, we busily researched the treatment options available and were shocked to find out that brain tumour research was so seriously underfunded in the UK.”Read more
Janet CoplandWhen charity volunteer Janet Copland, 74, started getting confused and forgetful over Christmas 2013, her husband and two daughters initially thought it was dementia. The family were devastated to be told that her symptoms were actually caused by an aggressive brain tumour that required urgent surgery. Janet’s early optimism was later dimmed by radiotherapy and rapid decline. She died just eight months later.
“We lost my mother in eight months but the tumour took hold before any of us were aware what was happening. Life can change at any moment.”Read more
Wife, mother and grandmother Janet Disney passed away just weeks after being diagnosed with a primary malignant brain tumour. She had lived her whole life in Wellington, Somerset, and was married to Steve for 36 years. The couple were members of the United Reformed Church and Janet, a keen baker who loved her holidays, was 74 when she died in June 2015.
“We had to wait for the scan results. We told the consultant we were due to go away for a few days to our caravan and it was agreed we should still go. As it happened, we were on our way to Dorset when the call came. It was devastating and I was in tears as I was told that Janet had an inoperable brain tumour on the left hand side and that, eventually, her right side would diminish. In fact, her whole body was affected for the last six weeks or so of her life. She relied on me completely for the last month and, as any husband would, I did everything for her.”
Janette "Jay" SherrellJay Sherrell passed away in May 2015, a little over three years after being diagnosed with a grade 4 glioblastoma multiforme. She was 43 and left two young children, an identical twin sister, an older brother and sister plus her mum.
“Although we had known for some time that this moment was coming, I was still extremely shocked when Jay died and, to start with, didn’t really cope at all. I truly felt as if I had lost my shadow. It was as if someone had cut off my arm. I still dream about her a lot and have flashbacks of the times that we were teenagers doing silly things. I talk to her all the time as if she is still here with me. Of course I miss her like mad but I see her every day when I look in the mirror.” Read more
Jayendra V PatelDad, or JV (as he was always known), found out he had a grade IV glioblastoma multiforme in his temporal lobe on his birthday and two weeks before his eldest daughter was due to get married. Just over a year later, his immediate family were all present when JV died.
“Mum is overwhelmed with the amount of help she is now receiving from the local community since my father’s death. She and Dad were one of the first Indian families to settle in Bristol. Everyone is doing as much as they can to fundraise so that ultimately a cure can be found for brain tumours and so that other families will not have to endure watching their loved one deteriorate and die like we did.” Read more
Jeffrey GreyJeffrey was diagnosed on 14th February 2012. Valentine’s Day will never be the same again for me.
We had already noticed that Jeffrey’s speech was a little strange and that he was having some issues with his balance. He had also started struggling to complete the time sheets for his local council job. It was thought he had suffered a mini-stroke so it was a real shock when Jeffrey went for a scan to discover he actually had a brain tumour. When I saw the scan I knew straight away – I had seen his father’s MRI scan two years earlier and his tumour and I recognised it immediately. Read more
Jessica HoffmanNewly-qualified teacher Jessica Hoffman, 23, initially laughed off forgetting the names of the children in her class, sending nonsensical texts and having a heightened sense of smell. Jessica was completely shocked to discover that she had an aggressive brain tumour and needed urgent treatment. Jessica managed to get her life back on track for another two years before the tumour returned. She endured five surgeries in just one year, but it was too late and she died in May 2016.
“Jess wasn’t given a prognosis but I knew from the internet that “long-term” GBM survival could mean just two years after diagnosis. I told myself that if everyone was predictable then they would be able to cure it. Jessica was young and healthy, she wasn’t going to be an average statistic.”Read more
Joe WilsonOur son Joe was only eight when he was first diagnosed with a brain tumour and underwent surgery. He recovered well and we managed to get on with life despite the anxiety of knowing there was a high chance the tumour would come back. Joe was so positive and carried on even when he had to undergo radiotherapy at 13. Joe left home and started a new life at university. Within months he suffered a seizure and never fully recovered. He was 20 when he died at home with his fiancé of two weeks and us at his bedside.
“Joe’s brain tumour dominated the whole of his adult life. Despite everything he remained outgoing and managed to keep his positive outlook, he had a great love of life. He had just started at university when his tumour came back with a vengeance. He had met a great girl who he loved and they got engaged two weeks before he passed away with his head on my shoulder and surrounded by those he loved.” Read more
Joel Evan GreenJoel was just a year old when he was diagnosed with a brain tumour. Born into a large and loving Christian family, Joel defied expectations but was eventually lost at just four years old. Now his parents Ryan and Amy, together with Joel’s four siblings, are remembering the little boy in a most remarkable way. They have developed a video game which allows players to experience the highs and lows of Joel’s cancer journey through the interactivity that only a video game can offer.
“Life is very game-like. Fighting cancer is like a game because you’re trying to do just enough to kill the cancer but not hurt the child. You balance all the options. And it is a multiplayer game because you have doctors, nurses and family all involved in this process of trying to keep your child alive. There are puzzles, as well as simple mechanical tasks like administering medication, taking blood pressure, giving him food – or making him laugh. The difference is that, in a game, if you’ve mastered the skillset, you can beat the level. That’s where the comparison stops.” Read more
Devoted husband and dad John Annis was diagnosed with a grade IV glioblastoma brain tumour in December 2013. One year later, he lost his life after collapsing in the shower room at home in the arms of his wife Julie. He was 48. John and Julie were teenage sweethearts and had been married for 27 years. Their daughter Sophie was just eight when she lost her dad.Read more
John FulcherJohn Fulcher was taken ill on a business trip to Canada. He was diagnosed with an inoperable glioblastoma brain tumour and, together with his wife and accompanied by a nurse, was flown home to the UK. Under the care of Kevin O’Neill, consultant neurosurgeon at Charing Cross, John underwent several surgeries but died ten months later. His widow Wendy is chair of the charity Brain Tumour Research.
“While John was ill and after his death I learnt how little was known about brain tumours and how little research funding was available. Brain tumour research was seriously under-funded and I was shocked to learn there was no national charity dedicated to this area. I am proud to say that the Brain Tumour Research Centre of Excellence opened in September 2015, is part of John’s legacy. It would not have happened without him or without his surgeon Kevin O’Neill.” Read more
John McCabe CBEComposer, pianist and former Director of the London College of Music, John McCabe CBE was lost to a brain tumour on 13th February 2015, just weeks before his 76th birthday. He had been married to Monica for 40 years and lived in Kent. John was widely loved and respected across the world of classical music.
His wife Monica tells his story …
John McMahonJohn was looking forward to a long and happy retirement with his wife Judith. Previously fit and well, he began experiencing seizures and was later diagnosed with a low- grade glioblastoma brain tumour. Within months the tumour had changed to an aggressive grade IV and he underwent radiotherapy and chemotherapy. He defied expectations to live for three-and-a-half years, losing his battle in June 2014.
Here, his wife Judith tells his story … Read more
John PettyferJohn was just 51 years old when his life was cut short by a glioblastoma multiforme, but right up to his last few days he continued to think of and care for his family and animals, rather than dwell on himself. He was a very brave man who kept everyone entertained with wonderful anecdotes and his great sense of humour.
Here is John’s story…
“My Dad died in the early hours of Monday 25th July 2011. The whole family was aware that an eerie silence had fallen, that there was no dawn chorus, not one cockerel crowed… And when I went out to tend his animals, my Dad’s favourite cockerel was dead, and the single ferret he owned was missing from her cage. We like to think he took them with him.
“Life sometimes makes no sense and most certainly not in this case. My Dad was far too young to go at just 51 years old. But Dad, you were never beaten! We believe you just had somewhere else you needed to be.” Read more
After experiencing slurred speech and severe neck pain, farmer, dad and grandad, John Riches, was diagnosed with an inoperable grade four glioblastoma multiforme (GBM), a very aggressive form of brain tumour, in 2001. He died less than a year later, aged 58.
“I called home one night to see how they both were and asked if dad was free to talk, to which dad shouted ‘I’ll speak to him tomorrow’ over the sound of the TV show, Have I Got News for You. Sadly, I never did get to speak to him the next day.”Read more
Jon WinnFather-of-five Jon Winn died after a five year battle with a brain tumour he didn’t even know he had. The glioblastoma mulitforme (GBM) which took his life wasn’t diagnosed until after his death. His partner is angry that he was misdiagnosed and endured a nightmare five years struggling to get answers.
“As the months went by, Jon continued to go downhill and I had to give up work to look after him. Jon lost his speech and it became difficult for him to move around. He could no longer play football with the boys. I did my best to see that we could still do things as a family.” Read more
June Irene PileWife, mother and grandmother June Pile passed away less than six months after undergoing surgery for an aggressive glioblastoma multiforme (GBM). In her final weeks she was able to fulfill her dying wish to see her youngest son marry. Sadly, she was taken ill later the same day and passed away a fortnight later at the age of 72.
“As many family members as possible gathered at short notice to witness my brother’s marriage. Mum took pride of place at the front and it was a lovely, moving, and at times funny, ceremony. Afterwards I even caught mum light-heartedly lecturing Steven about looking after his bride and making her happy. Sadly, these were her last audible words. Shortly after she was taken back to her room after suffering a seizure; a nurse explained that the excitement of the day had got the better of her. To see my mum going through this was unbearable and more upsetting than words could ever express.” Read more
Katherine CarnegieKatherine and I met in 1994, we both worked hard in London writing and designing for various glossy magazines. In 2002 we moved to France to bring up our son Milo and daughter Ella. Life was good. Katherine turned out to be a talented travel writer and was receiving commissions back to the UK, much to my chagrin as I was supposed to be the talented writer in the family, and I was busy renovating our home near Nimes, and writing a book. Katherine was incredibly popular in the village, she was beautiful, thoughtful, polite, kind and gracious, and made a huge effort to engage and fit in with village life. Read more
Kathy BridgeKathy was 62 and looking forward to enjoying a well-earned retirement when she was diagnosed with a stroke which was later found to be a grade 4 glioblastoma multiforme brain tumour. Her prognosis was very poor. She passed away just four months later, but not without an enormous amount of degeneration and suffering.
“Losing Mum has left a huge hole in my life and for her to die from a brain tumour was the most horrible way for her to go. She changed so much both physically and mentally. It was awful watching her deteriorate in this way. But whilst it was absolutely heart-wrenching to lose the woman I considered my best friend, I would have hated to see her continuing to suffer for any longer. I feel for anyone who has to go through the agony of a brain tumour.” Read more
Katrina DurhamKatrina was eventually diagnosed with an Astrocytoma grade III, having experienced seizures for several years – her consultant had been happy just to monitor her. Eventually, however, despite a craniotomy and chemotherapy, Katrina succumbed to the tumour and passed away at the age of 43.
Here is Katrina’s story…
“Katrina was such a beautiful person – she was gentle and kind, passionate and determined and was so full of love and compassion. I am just so grateful and privileged to have shared 24 years with someone so unique, extraordinary and amazing, but I miss her terribly.
Now I want to increase awareness of this terrible disease for which there is no known cure and celebrate Katrina’s life.” Read more
Levi RingerLevi had been under a consultant all his life for constipation (which we now know was associated with his tumour). He started having recurring headaches in December 2005 and was waking up in the night to be sick, as well as having dizzy spells. We were told it was due to migraines, but I was very insistent that the doctor’s didn’t leave it at that without first having a CT scan – how could they know what was really happening inside Levi’s head without looking? Read more
Lola RiceLola had been a happy, healthy little girl, excited about her upcoming third birthday, when a sudden bout of sickness struck in 2006. Initially dismissed by doctors as a tummy bug, there seemed no cause for concern. Lola then suffered a seizure and was rushed to hospital by her scared parents, to be told that their darling eldest daughter had a large brain tumour covering the right side of her brain. Despite emergency surgery, Lola died the next morning, just four days after she first became ill.
“When I’m laying the table or counting the girls into the car, I still feel that there’s someone missing. I don’t think that you get over grief like this, maybe you just get better at hiding it but the feelings are always there.” Read more
Lorna AtkinsonLorna was diagnosed with an aggressive GBM4 brain tumour in September 2014. She was an outgoing, healthy lady of 68, who enjoyed playing badminton regularly, going to Zumba and Boxerfit classes and spending time with her two daughters and her grandchildren. She had just moved into a new home with her partner of three and a half years when she was given the devastating news that she had a tumour in her brain.
Here is Lorna’s story as told by her daughter Lisa…
“Dad died very suddenly in 2009 from a heart attack, which was a massive shock to us all. In many respects, the way he went was so much better, as he passed away being the same person we had always known him to be. Mam’s brain tumour changed everything about her; her personality, her appearance, her behaviour; she had changed so much that she was barely recognisable as the same person as before. Brain cancer is so cruel.” Read more
Louis KenneyIn 2004 when Louis was just four years old he was diagnosed with leukaemia. We had sometimes noticed unexplained bruising and his skin often appeared quite yellow, but the GP had reassured us he was probably slightly jaundiced. Then Louis collapsed and we took him to A&E where they discovered he had leukaemia. Read more
Louise Black was 42 years old when she was diagnosed with a brain tumour, back in 2005. Over the next 7 years she underwent brain surgery twice, and received both chemo and radiotherapy to manage the disease. In April 2012, Louise celebrated her birthday and the wedding of her youngest daughter Gina, all the while knowing that her tumour had finally spread. In September 2012, Louise passed away peacefully. She was only 49 years old.
“Mum invited me round for dinner one night. She and my sister had bought bases, sauce and toppings to make their own pizzas. I wondered what the special occasion was, as my mum wasn’t really one for cooking all that much! Whilst I ate, Mum was staring at me, so I asked her what was wrong. We all knew she had been feeling unwell, but when she said the words ‘brain tumour’, I couldn’t even take it in. I looked at my younger sister and her eyes were filled with tears.”Read more
Louise EdwardsLouise was diagnosed with an aggressive brain tumour at the end of October 2012 but vowed she would remain positive and fight to survive. To her friends and even other family members, Louise, who just five years earlier had lost her only sister to breast cancer, had “a lesion” and was going to get better. Tragically she passed away in December 2014, aged 50, leaving her husband and children, Lucy 14 and Joe 17, heart-broken.
"I was lucky to have an understanding boss and work for an organisation that had clear, supportive and flexible working policies, so I was able to take Louise to all her treatments, apart from one, as long as I made up work time. I was astounded, however, to meet other people who worked for other organisations, accompanying partners or family members for oncology treatment, who, to appease their bosses, had to get up at 5am to put in the hours, prior to attending an afternoon appointment at the hospital." Read more
Louise HudsonLouise Hudson was diagnosed with an astrocytoma brain tumour at the age of 26. She continued to live alone in London near her beloved Camden for a number of years although she became increasingly unwell. During the final weeks of her life, Louise moved into her mother Susan’s home and spent her last days surrounded by friends and relatives with the family cat sleeping beside her. Louise underwent gruelling surgery and radiotherapy and survived a relatively long time before losing her battle ten years after her diagnosis.
“Although she was very ill, Louise was extremely active and it was hard work. After a while, we made up a bed for her downstairs and she was able to enjoy the sunshine, looking out into the garden and sometimes lying outside on a sunbed. The cat took to sleeping on her bed and lots of her friends would visit; sometimes there would be a party atmosphere.” Read more
Lynn CarterLynn worked as a teaching assistant at Epsom & Ewell High School for many years. She and her daughter, Jade, were very close and used to get together two or three times a week, often to go out for dinner or to the cinema. In 2012 she was diagnosed with an aggressive brain tumour after displaying changes in personality. She survived nearly four years after diagnosis, but developed a form of leukaemia, probably as a result of her chemotherapy, which killed her in June 2016. She was 56.
“The day of the craniotomy coincided with her Mum’s funeral so she obviously missed it. It was very hard leaving Mum in the hospital to go to Nan’s funeral and very difficult not being able to tell my Granddad the real reason why Mum wasn’t there either. We told him that Mum was having a routine operation, not that they had found a grade 4 brain tumour.” Read more
Maggie HarveyMaggie was a woman who loved life, her job and her family and friends. She had always lived life to the full until she was diagnosed with a glioblastoma multiforme. She and her family then felt like they had stepped onto a roller coaster, yet they were determined to make the most of the time Maggie had left.
Here is Maggie’s story….
“Mum’s brain tumour was a big, big shock, which we never saw coming. Nobody close to me has had cancer, so it was a big learning curve. We are a very close, small family and I was very close to my Mum. It was so devastating for my brother, aunt and I and so disappointing that there were no options for her. Breast cancer research gets lots of funding and there are lots of treatments. Why can’t the same be true of brain tumours? I can’t believe that there are no effective treatments, let alone a cure.” Read more
Mahendra MehtaDevoted grandfather, father and husband, Mahendra Mehta dedicated his life to his family and charitable causes and was looking forward to retirement when he was unexpectedly diagnosed with an aggressive brain tumour. He underwent months of gruelling treatments, before lapsing into a coma the day after his 68th birthday. He passed away six days later, just seven months after his diagnosis.
“Papa was always happy and smiling…it was so hard to see his energy and enthusiasm ebb away. During his illness, Papa would say: “I just want to have fun again”.” Read more
Malcolm (Mac) Fairrington“One of life’s good guys”. Mac Fairrington, was diagnosed with an anaplastic astrocytoma in 2014 after complaining about headaches and a strange smell. He underwent nearly two years of treatment, losing his vision, mobility and independence, but not his spirit nor determination to survive. Mac died aged 67, leaving behind his wife Kath, five children and five grandchildren.
“People talk about peaceful deaths, but he did not go quietly. He fought till that last breath. He never wanted to leave my Mam. They were the love of each other’s lives.” Read more
Malcolm HillFormer senior policeman, Malcolm Hill, was making the most of his first grandchildren (Matilda and James) and hobbies during retirement when he began to notice recurring pins and needles and a strange taste in his mouth. After Malcolm’s brain tumour diagnosis in 2013, his family continued to think positively after the initial shock. However, seizures affected his speech until he was barely able to communicate and Malcolm died, with his family around him, in July 2016.
“Dad had been getting pins and needles down one side of his body and experiencing a very strange taste in his mouth. He described the taste as being like the smell of “burnt bodies” and, being a policeman who had seen and smelt all sorts, that was a particularly striking description!”Read more
TV gardener Danny Clarke had already lost two siblings and a parent in quick succession when his beloved sister Margot became ill. The family witnessed her decline over two years following her glioblastoma multiforme diagnosis before she died aged 52, leaving a husband and young daughter.
“Every now and again we might get a glimpse of the old Margot but, mostly, it was like talking to a child. It struck me that seeing my dad and other siblings die had been very different. Brain tumours steal the person long before their body finally gives up.”
Mark CoganMark fought and lost a 16 month battle with a brain tumour, leaving his extended family and many friends, particularly from his life as an outstanding martial artist, utterly devastated.
Here is Mark’s story…
“Every minute I looked after you throughout your illness was an honour and a privilege, Mark. You were an inspiration to all of us as a son, a brother and a father. Rest in peace, mate. I miss you.” Read more
Mark GashOut of the blue, Mark had a fit one evening and, following a visit to his local hospital, was diagnosed with a brain tumour. Just three and a half weeks later he passed away.
Here is Mark’s story…
“My only consolation was that Mark wouldn’t have liked to carry on if he couldn’t have lived the life he wanted to lead.” Read more
Matt LowtherMatt and Gill moved to Peebles to achieve a better work-life balance and were looking forward to raising their two children in the beautiful Scottish Borders. After collapsing at home, Matt was rushed to hospital and diagnosed with a high-grade and aggressive brain tumour. He underwent surgery and treatment but passed away less than two years later, in March 2016 at the age of 38.
“When our daughter asked ‘Is Daddy going to die?’ I told her that he was and that he had been fighting hard but the doctors couldn’t help him anymore. She ran in to tell her little brother and we all cuddled and cried together. Although Matt knew it was right to tell the children it was so sad and so difficult for him. It’s one thing talking about someone’s death but quite another when you are speaking about your own.” Read more
Matthew WrightA pheasant rearer and mechanic in North Yorkshire, Matthew was 25 when first diagnosed with an astrocytoma. Matt battled the tumour twice successfully with craniotomies, radiotherapy and chemotherapy, during which time he proposed to and married his soulmate, Georgina.
After the tumour returned for a third time with a vengeance, Matt was told nothing more could be done and sadly he lost his fight in September 2014 aged only 33.
“Even though there is still no cure at present for Matthew’s type of brain tumour, we were absolutely devastated to be told when the tumour came back this time that there were no more treatments available to try.” Read more
Michelle was happily married, running a successful business and looking forward to the birth of her first child. She was struck down at the age of 29 with an undiagnosed high-grade brain tumour which, within hours of any symptoms, claimed her life and that of her baby.
“Michelle’s husband James took the tragic decision to turn off her life support machine so losing his wife, his first child, and all his hopes and dreams for their future. I take consolation from the fact that Michelle had a massive seizure and was unaware of what was happening to her or that she even had a brain tumour. It is unbelievably cruel that she should be snatched away from us in this shocking manner at the age of just 29 when she had so much to look forward to and was the happiest she had ever been. There are no words to describe our loss.”Read more
Mick DeansMick was a wonderful husband and father to his two children, Lily and Harry, who were 18 and 15 respectively when he died. He was diagnosed with a glioblastoma multiforme in December 2014 after suffering a couple of big seizures. Sadly, he passed away soon after surgery in August 2016 after suffering a bleed on the brain.
“I want people to know what Mick went through because he kept so many things from everyone. It’s terrible that people have to go through the torture he did and that there aren’t more effective treatments, let alone a cure. We have set up the Micky Deans Trust to raise funds for Brain Tumour Research to bring hope to families in the future.” Read more
Mike and Jenny ParryHusband and wife Mike and Jenny Parry were both lost to aggressive glioblastoma multiforme (GBM) brain tumours. Jenny endured the loss of her husband, aged 56, only to be diagnosed with the same tumour type 15 years later. Having seen Mike go through gruelling surgery only to have the tumour grow back almost immediately, Jenny refused treatment. Instead she spent her final weeks making the most of the time which remained with their daughters Charlotte and Justina. Read more
Mike DandyMike and Eithne were happily married for 31 years and had two children, Peter and Eleanor. Mike had recently sold his company and they were looking forward to a long retirement together. Then Mike was diagnosed with a grade IV astrocytoma and was given a prognosis of just eight weeks.
Here is Mike’s story…
"In memory of Mike - Peter, Eleanor and I have set up the dandy trust, an umbrella group under Brain Tumour Research, with our mission being to strive for early diagnosis. So often the warning signs are missed because people don’t know enough about brain tumours. Health professionals need to be better educated so that patients get referred at the earliest opportunity." Read more
Mike MasonMike was diagnosed very dramatically in August 2007. He was still playing football, but was experiencing a sensation of numbness in his left foot, which made it difficult to put his shoe on. This numbness then spread to his leg and his left-hand side, causing him to collapse.
He went to hospital and within one day he was diagnosed. A week later he was operated on and a biopsy was performed. We were stunned to find that the tumour was grace IV and that it was incurable. We could not believe it. Mike was a very positive person and refused to accept that he was going to die. Read more
Monika Haftmann was a nurse and care worker and was married with grown-up daughter. She was diagnosed with a glioblastoma multiforme (GBM) brain tumour and died ten months later at the age of 56.
“Alongside her conventional treatment, mum tried things like homeopathy, I encouraged her to change her diet and she even had injections of snake venom. There were times when I thought the stress and worry I had caused her had contributed to the illness but I know in my heart that is not the case; the fact is that no-one knows what causes brain tumours and there is no cure.”Read more
Naseem PishvaieDestined for a bright future as a performer, Naseem Pishvaie battled with an aggressive glioblastoma multiforme (GBM) brain tumour for three years. She first became ill just a year after following her dream by attending a school for the performing arts. In the difficult times that followed she managed to keep her sense of humour and remained positive. She died in 2009, just a few weeks short of what would have been her 22nd birthday.
“My daughter was always beautiful and remarkable but the depth of her beauty was never more apparent than in the courage with which she faced her illness. To battle such a serious illness and treatment with its undesirable side effects showed tremendous bravery, dignity and determination. We have been told that she was an inspiration to the patients she knew at the hospice day centre which she attended weekly.” Read more
Neville HoltNeville was a loving husband and proud father and grandfather of two sons, a daughter and four grandchildren. Once his brain tumour was finally diagnosed, he survived barely another 14 weeks, yet his GP had insisted his symptoms were down to a mild stroke. He was physically very fit, enjoyed his garden and walked regularly. Read more
Ng Tin KauRay’s father was diagnosed with a glioblastoma multiforme in 2007 and given a prognosis of just a few months, yet for nearly a year he defied the doctors’ predictions and made spectacular progress until the tumour returned with a vengeance and he lost his battle.
Here is Ng Tin Kau’s story…
“Since being adopted that six month period spent with my [biological] dad was the longest we had spent together. It brings back memories of great happiness, whilst also being so incredibly traumatic.”
Nick CottonNick was a loving and intelligent man with a great sense of humour, who loved life. He had only been married six months when he was diagnosed with an aggressive anaplastic oligodendroglioma brain tumour. Less than 10 months later, at the age of 30, Nick passed away, having exhausted all known treatments. Read more
Nicki WatermanNicki Waterman, one of the UK's foremost fitness experts and The Sun columnist, was diagnosed with a rare and aggressive brain tumour in 2015. Pioneering immunotherapy treatment prolonged her life and she was able to see her son marry and spend time with her precious grandchildren, before rapidly declining. Nicki died in August 2016, just 15 months after her diagnosis, leaving her family and friends heartbroken.
“We thought our Mummy was invincible, my brother Harry and I. She was always incredibly fit and healthy with so much energy... Brain tumours like hers are too aggressive; they just don’t have enough new, effective treatments to offer patients.” Read more
Plumber Nigel was buried on his 57th birthday, leaving behind his wife, Anita, and their four children. Just one year before, the couple had been celebrating Nigel apparently beating four brain tumours by renewing their wedding vows on a “holiday of a lifetime” cruise. He died 37 months after being diagnosed with several grade four glioblastoma multiforme.
“To look at the person you love and see such shock and horror in their face… it’s not something I ever want to see again… Each day was stomach-churningly horrible. I stayed with him after he died, talking to him and crying.”Read more
Nigel BarberNigel passed away in June 2013, two years after being diagnosed with an aggressive grade IV glioblastoma multiforme (GBM) brain tumour. Prior to his diagnosis, he was fit and living a busy life as a husband and father of two sons, now aged 31 and 26, working as a ‘rocket scientist’, and enjoying sailing on the south coast. Read more
Nigel LeggFather-of-two Nigel Legg was enjoying life and when he started to experience problems with his balance, hearing and eyesight. After numerous trips to doctors Nigel was finally referred for a CT scan where it was revealed he had a glioblastoma multiforme (GBM), a very aggressive form of brain tumour, and given the prognosis of 14 months. Sadly, Nigel died just six weeks later, leaving behind his wife Juliet and sons Michael and Jamie.
“When the results came in that Nigel had a brain tumour my heart stopped beating. They explained that they would need to do a biopsy to get a formal diagnosis. But we both knew it was serious.”
Primary school pupil Oscar was just six when he was taken ill. Within days he was diagnosed with an incurable and untreatable diffuse intrinsic pontine glioma (DIPG) brain tumour. Diagnosed at half term, he never made it back to school, but died at home a fortnight later surrounded by those he loved.
“Oscar had a brain tumour. It was aggressive and incurable. There wasn’t even any treatment which would have given us more time. We should take him home and make the most of the precious days we had left. Our precious boy never even made it back to school. He died in November 2002, just two weeks after his diagnosis. He was six.”Read more
Pam DelomePam was the proud mother of four children, five grandchildren and two great grandchildren. She used to go out to the US for six months over the winter every year to visit her sons and daughter who lived there and it was on one of these visits that her daughter first became aware of certain personality changes. Eventually Pam was diagnosed with a glioblastoma multiforme grade IV. She passed away just over a year later in 2011 Read more
When mum-of-two Pamela Kinnersley was struck down with what appeared to be an ear infection in May 2014, she thought she was just under the weather. However further tests and scans revealed something more sinister. She had a grade four glioblastoma multiforme (GBM), an aggressive type of brain tumour. Unsuitable for surgery and adamant she didn’t want radiotherapy, Pamela chose to live her life to the full for as long as she could. Unfortunately, she died just three months later at the age of 56, leaving behind her husband, two children and two grandchildren.
“When the consultant came a few hours later to talk through her CT scans, my suspicions were confirmed. He explained she had suffered a bleed on her brain from a tumour and the neuro-oncologists at the nearby James Cook Hospital would be able to speak to us about the next steps. Though the formal diagnosis hadn’t been said, I think we all knew then that this was serious.”Read more
Pamela RawnsleyJeweller and silversmith Pamela Rawnsley was struck down with a glioblastoma multiforme brain tumour and died at the age of 62, 99 days after diagnosis. Widely considered to be at the height of her creative powers with much more to give, Pamela’s work was inspired largely by a reaction to places and she loved the wildness of the landscape and the weather in the Brecon Beacons where she lived and worked.
“Brain tumours, it seems, are a unique enemy. They appear to be unprovoked. They can be dissembling, insidious, masters of disguise. Their forces come in a complex variety of forms. When attacked, they can retaliate at once with sometimes overwhelming power. They move fast, often unpredictably. They are equipped with impressive layers of armour. They pick out children. They have terrible weapons that we struggle to match. Their numbers are growing. Doesn’t it shame us that we fail to meet this unique enemy on equal terms?” Read more
Paul Daniels“It is important to me to share Paul’s story because I want to help other people. Paul was one of those people who genuinely lit up a room when he walked in and I want people to know how this cruel disease stripped him of everything within a few short weeks to the point where he collapsed on the bathroom floor and I held him as he wept and asked me what was happening to him." Read more
Paul was just starting out on married life when he was diagnosed with a benign brain tumour, which later became malignant. His courage and determination to leave a lasting legacy for others diagnosed with brain tumours saw him raising tens of thousands of pounds to fund vital research to find more effective treatments and ultimately a cure.Read more
Paul MillsPaul was enjoying life with his family in Singapore. With a great career and a busy social life, they were living their dreams. But within months he was diagnosed with a grade IV glioblastoma multiforme (GBM) brain tumour. He passed away 20 months later leaving wife Emma and young son Thomas. Read more
Paul MitchellPaul was a loving husband and father of four year old John James when he was diagnosed with possible depression in 2001. Instinctively his wife knew that this was not the correct diagnosis, but she never expected that the underlying cause of his illness was a brain tumour which was to take his life in just 18 months. Read more
Penny and I met in 2004 – she was a lovely-looking lady and an excellent dancer. We had lots of fun going to dance classes together until, following her diagnosis with a brain tumour in 2009, she went on to experience dizziness and had to stop.
Early in 2015 Penny started to have mobility problems, which by October 2016 had become particularly pronounced. The last year was a nightmare as we looked everywhere to find a way to extend Penny’s life. In the end there was no more treatment available and she passed away.
“It is disturbing that there aren’t more potential drugs in clinical trials – brain tumour patients generally don’t have any time to waste, yet palliative care and support is very costly. I am passionate that we need to do significantly more to stop patients getting to this stage because the lives of whole families and their friends are completely devastated while they wait for the inevitable to happen.”Read more
Pete was an electronic engineer working for BT, a loving husband and a proud father of two grown-up daughters – Alice and Emma. A gentle, kind and fun-loving man, he would do anything for “his girls”. Following a series of seizures, a bleed on the brain and subsequent surgery, Pete was diagnosed with a grade 4 glioblastoma multiforme (GBM4).
“Whilst it is a mystery how Pete died, and whilst cancer and its rigorous treatment most certainly had some part to play, we are all glad that he didn’t die of the tumour. I tell myself that we have been blessed. Even though at 60 Pete was very young to die, we were saved from the inevitable slow and agonising process, which sadly so many brain tumour patients have to endure.”Read more
Phil ColesPhil lived for seven years following the diagnosis of a brain tumour in 1998. His illness was a long and difficult emotional journey for his close family - although he remained brave, stoical and accepting of his condition throughout.
“Phil remained very brave and stoical about his illness. He knew he was going to die and told me that this would be our last Christmas together.” Read more
Prem BediHusband, father, and grandfather, Prem Bedi was diagnosed with an aggressive glioblastoma multiforme (GBM) brain tumour after his family noticed personality changes. The usually quiet man who loved Bollywood music and was a talented singer, became forgetful which made him frustrated. He passed away just a few months later.
“Prem’s first love was music and I believe we were the first couple to have a live Asian band to play at our wedding. Music was Prem’s life and his passion. He would beat out rhythms on the kitchen table as we sang the old numbers together. I miss him so very much and am so, so lost without him.” Read more
Ralph BakerNewspaper printer Ralph Baker suffered excruciating headaches and swelling to his head before his brain tumour was diagnosed in 1954. Surgery was deemed impossible and the prognosis with radiotherapy was very poor so he received no treatment. Within three months of his diagnosis, Ralph lost his life. He was 43. Read more
Rebecca Ann Shone Walker
Rebecca battled five brain tumours and passed away on 25th January 2015. She was 33. When she was diagnosed with her second brain tumour, Rebecca and John, her teenage sweetheart, married quietly on her birthday. The following year she was in remission and they renewed their vows in a celebration of her life. When the devastating news came that her illness was terminal, despite numerous operations and many gruelling months of chemotherapy and radiotherapy, Rebecca planned her own funeral and even filmed herself giving a reading which was shown at the service.Read more
Rebecca “Bex” was just 23 when she was diagnosed with a grade four glioblastoma multiforme (GBM) brain tumour and told she had a year to live. She outlived the prognosis, surviving for nine years, and despite being told her extensive treatment would leave her infertile, gave birth to a “miracle” daughter who was seven when she lost her mum in June 2017.
“Although there was no change in Bex’s tumour for six years its presence was always there, casting a shadow, and it was as if we lived on a knife-edge as we waited anxiously from one scan appointment to the next. Bex was really positive where I was more realistic and ensured her daughter Phoebe was prepared from the beginning for what was likely to happen. Phoebe had always known she was going to lose her mum and we are now her Moma and Popa. She is a delightful child, so much like Bex and it is hard not to cry as she catches me unawares by saying things like how much she misses her mum’s warm hands and I know exactly what she means.”Read more
Richard SmithWith three grown-up children and his first grandchild to dote on, Richard was only 51 when his health started to fail. Crippling headaches were initially dismissed as tension, but later discovered to be a GBM grade 4.
Richard battled surgery, chemotherapy and radiotherapy to be able to walk his eldest daughter down the aisle before the GBM grew and he was told that nothing more could be done. Richard died at home peacefully in November 2013.
“Despite his shock, Rich gladly donated the tumour tissue for research purposes, hoping it might uncover something that would get rid of it.” Read more
Rob was just 24 when he was diagnosed with an inoperable astrocytoma glioma brain tumour. Faced with a bleak prognosis of just 18 months he underwent treatment, including radiotherapy, knowing it was likely to destroy his hopes of ever having children. Dubbed the “miracle man” for outliving expectations, he went on to father a “miracle baby.” As Rob’s condition deteriorated and treatment options ran out, his wife Teresa and their daughter Lily-May, aged two-and-a-half, prayed for a miracle of a different kind. Sadly, Rob passed away on 11th August 2016.
“As Rob finished his radiotherapy, I was working on a maternity ward in the same hospital. On the one hand I was celebrating new life and dreaming of the babies we longed for, while on the other I was facing the very real possibility of losing the man I loved and, with his death, the future we had planned.”Read more
After experiencing a sudden seizure at the family home, 56-year-old Robert Rennicks was rushed to hospital with suspected diabetes in May 2016. After weeks of numerous tests and scans, Robert was shocked to learn that the seizure had actually been caused by a brain tumour. Due to its size, location and aggressive nature, removing the tumour wasn’t an option and his only choice was chemotherapy and radiotherapy to help control its growth. Sadly, less than six months after diagnosis, Robert lost the battle and died just before Christmas 2016.
“I had to go back to university for my exams, but Mum assured me that she would call when they knew anything. It was the following week that I got a call from Mum suggesting that it could potentially be quite serious. The results from the scan showed Dad had a mass on his brain and they thought it might be cancer.”Read more
Robin MenaryRobin was a strong, healthy, happy and very sporty 36 year old, looking forward to the birth of much longed for twins, when, without warning, he was diagnosed with a grade IV glioblastoma brain tumour - one of the deadliest forms of cancer. Only 17 months later, on 24th August 2011, Robin died aged just 38. Read more
Doted on by his older siblings, baby Ronnie was just three months old when he was diagnosed with a brain tumour. He underwent surgery but passed away not long after his first birthday in December 1990. Almost 27 years later he is much-missed and remembered every day by his brothers and sisters including those he never got to meet.
“Mum never got over her loss, she found it hard to say her final goodbyes. The night she passed away in January 2013 of multi-organ failure we all whispered in her ear that she was going to be with Ronnie again. Mum’s funeral brought everything flooding back to me. I can recall clear as day when we gathered to say goodbye to Ronnie, the tiny little coffin, and wondering how to make sense of it all. The lives of us all were changed by our loss at such a young age although it brought us together as a family.”Read more
Ross PearmanRoss was diagnosed with an Astrocytoma grade II at the age of 30 and had to give up work because of the many seizures he was experiencing. He was cared for by his wife, Amanda, a trained nurse, as well as extended family, and kept positive by focusing on his two young children, but, at the age of 35, Ross lost his battle against his tumour, leaving his wife without a husband and two young sons – Phoenix, four, and Xavier, 17 months, without their father.
“It is awful that survival rates have remained unchanged for brain tumours whilst those of other cancers have hugely improved due to far greater levels of funding for research. If only there could have been effective stabilising treatments available for Ross, let alone a cure. We need much more research so that the scientists can bring real hope to other families who find themselves cursed like ours with this terrible disease.” Read more
Rowena was diagnosed with an inoperable brainstem glioma and died 17 months later at the age of four. Only now, nearly 20 years on, and in the hope of helping others, has her mum Elaine found the words to tell her story.
“It is only now, nearly 20 years later, that I am able to talk about what happened to Rowena. It is shocking to learn that there is still no cure and 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.
I have finally found the words to tell Rowena’s story in the hope it will help others. We must find a cure for this disease which has torn my family apart, leaving a crevice which cannot be filled and those of us who remain with a legacy of despair.”Read more
Ruby StinsonRuby was just three years old when she started to trip and stumble. Her difficulties were caused by a brain tumour which was so deep inside her head it was inoperable. She endured radiotherapy and chemotherapy, attending school when she could, and adored her new baby brother, giving him cuddles at any opportunity. Cradled in her mother’s arms, and with her father and siblings at her side, Ruby took her last breaths. She was just five.
“The hospice staff helped to lift Ruby onto my knee as she took her final breaths. To be so close for that last moment was so precious. She looked so peaceful lying in my arms and I just sat there for a long while. While it is seven years since we lost Ruby it still seems like yesterday. It is hard to explain my loss but it feels as if I have a large wall of water behind me, it is tall and stormy and every now and then a few drops of water fall down. If I look back it will all come crashing down and so I focus on what is ahead. If I thought about the enormity of it all it would be too much to bear. We love and miss Ruby and talk about her all the time. There has been great support from friends and people often say how strong I am but I don’t always feel it.” Read more
Ryan TaylorRyan Taylor’s life was turned upside down when he was diagnosed with a brain tumour in September 2013. He underwent surgery, radiotherapy and chemotherapy. Unable to work or drive, with the help of his family he tried to make the best of things and even managed to visit his sister Melanie in Dubai. Ryan passed away on 11th March 2017.
“My life has changed completely. I can no longer work and am dependent on others as I can’t go out on my own. I am fortunate that my sister, mum Sharon, dad John, are all so supportive. I am trying to stay positive but it’s not easy. I have been told I am now on palliative care and I am doing my best to help myself with as healthy a diet and lifestyle as I can manage. I get very tired which is a symptom of my chemo but I do what I can and still enjoy going out for lunch with my mum and keeping busy where I can. I think about how my life might have been all the time; it is particularly hard when I see people doing things that I can no longer do.” Read more
Sam O'CallaghanToddler Sam’s morning vomiting was initially put down to a stomach bug but within weeks an MRI scan revealed he had a brain tumour. He underwent multiple surgeries and gruelling chemotherapy treatment. Accompanied by mum Fiona, father Eoin and brother Luke, Sam received NHS-funded proton beam therapy in America. Despite the efforts of medical teams on both sides of the Atlantic and the love and support of his family, Sam passed away at home in May 2014. He was just five years old.
“We were told our precious toddler had a mass on his brain and needed surgery. It was horrifying. We signed consent forms knowing that Sam might not survive the surgery or could be left with permanent disabilities. If we didn’t sign he would die anyway. There was no choice to make. Sam’s condition was deteriorating so rapidly that within the space of a few days of his first symptoms he could no longer get out of bed.”
Sandy TorranceCommercial pilot Sandy Torrance, 59, was flown home from work after his co-pilot felt he wasn’t quite himself. Sandy went to A&E with his wife Theresa, and daughter Katherine, to be told that he had a virus and sent home. After becoming increasingly worried and returning to hospital for tests, the family were shocked to discover that Sandy had an aggressive brain tumour. His inoperable glioblastoma multiforme took his life just five weeks later, after so significantly altering his personality that he seemed barely recognisable to family and friends.
“One of the strangest quirks that Sandy developed was the compulsion to draw or write on anything with anything. He would use whatever was to hand - food, lotions, you name it - and draw on hospital tables, windows and walls. A friend once brought in a red marker and, by the end of the visit, there were two grown men looking like they had been involved in a crime scene.”Read more
Simon TurtonSimon was the youngest of three brothers with a daughter, Livy and a fiancée, Sarah. He was a very popular guy, fit and healthy, and enjoyed many interests over the years including football, rugby, music and motorcycling. He always had a happy-go-lucky outlook on life and many friends to share it with. Then in the summer of 2009, whilst at a wedding, he suffered a seizure affecting the left side of his body. Over the following weeks, this ultimately led to his diagnosis with an anaplastic astrocytoma brain tumour which was inoperable.
“My biggest regret was that I didn’t go straight down to the hospital the previous evening. First thing the following morning, I received another phone call from Sarah, this time saying I needed to come immediately. I dashed down and was shown straight to his bed, just in time to say goodbye.” Read more
Stella PenalverStella, a mother of two grown-up children, was diagnosed with an aggressive brain tumour in the parietal lobe a couple of months after a fall. Amazingly, the last 10 months of her life were the happiest she had been since losing her beloved husband in 1997. She passed away quite peacefully with her devoted daughter by her side.
“I used to tell Mum ‘I love you’ every night in case they were the last words she heard. Mum’s last 10 months were the happiest Raymond and I had known her have since losing Dad and, to spend them together with her living with me was very special – I couldn’t have loved her more.” Read more
Steve was a devoted husband to Lina and father of three children - Kevin, James and Sarah - when he died of a brain tumour at the age of 59 in June 2012.
“Knowing Steve and having him in our lives, I think we all can take strength from the wit and unwavering determination that he showed everyday whilst fighting this horrible disease…. This Christmas will be so hard without him, but I know there will be lots of great stories and funny memories to share, which will in time give us all the power to get through this difficult time.”Read more
Stephen was an only son with three sisters Kerry, Carly and Sophie. Out of the blue, at the age of 25, he had a huge fit on the football field. He was diagnosed with a grade 2 oligodendroglioma mixed with grade 3 and underwent a craniotomy as well as chemo and radiotherapy. Despite treatment, two years later, his stunned family found themselves saying goodbye to him.
“By this time I was very worried that Steve might have a brain tumour so I saw our GP. He made me feel very silly, telling me: “25-year-olds don’t get brain tumours!”Read more
Stephen RealfJournalist Maria Lester’s moving account of her brother Stephen’s brain tumour battle was first published in the Mail on Sunday’s YOU magazine*, a year after he passed away in August 2014 at the age of 26. She launched an e-petition which quickly attracted thousands of signatures and became the first to prompt an inquiry by the new House of Commons Petitions Committee.
“Stephen packed more into the six years after his diagnosis than most people do in 86. But he couldn’t keep fighting forever. By the time his 26th birthday came around he was in a wheelchair. He went into a rapid decline, losing his ability to speak, eat or even get out of bed. I don’t like to dwell on those final few weeks, as that’s not the Stephen I remember. To me, he will be forever dashing, forever dignified, forever beaming that beautiful big smile.” Read more
Steve HolbrookPolice officer and father-of-two Steve Holbrook passed away in November 2016. During the last year of his life, he worked alongside Brain Tumour Research to raise awareness of the disease and the underfunding for research which he felt was the only chance of finding a cure. Steve first became ill during a half marathon. Just months later, following surgery and treatment, he took part in the Milton Keynes half marathon to raise much-needed funds for Brain Tumour Research. His story is told in his own words and was last updated a month before he died.
“I find it terrifying and very hard to come to terms with the fact that no-one can tell me what has caused my tumour. I have a number of relatives who have lived beyond their 80th birthday so would have hoped to live a long life, particularly as I had looked after myself. Was it the fact that I was knocked off my bike as a teenager which caused the tumour? Or maybe something to do with drinking tea or running? The fact that so little is known about this illness which is so devastating, not just for patients but for their families as well, is a great injustice and why more research must be done.” Read more
Steve LloydHusband, father-of-two and West Ham fan Steve Lloyd passed away in September 2015 seven years after being diagnosed with an aggressive and inoperable glioblastoma multiforme (GBM) brain tumour. He had just turned 40. Steve underwent treatment and retired from work in January 2015 in order to spend as much time as possible with his wife Angela and daughters Bethany, 12, and Chloe, 10. They were at his side when he passed away.
“It makes me very angry to think that this horrible cancer affects so many relatively young people like Steve, who wasn’t even 40 when he was diagnosed. It seems crazy to think that so little investment is made in this area. Where are the cures, where are the medical breakthroughs, where are the clinical trials which could have given us precious extra time?” Read more
Sue ThomasSue was simply the best, so it was so apt that the Tina Turner track was her signature song. She loved life and lived it to the full – she was a wonderful wife and mother, an amazing career woman and a committed Christian, devoted to serving God. Even as the brain tumour took its strangle-hold, she remained determined to give love and encouragement to others, particularly to patients who were going through chemotherapy and radiotherapy just like her.
“Brain tumours take every bit of you, everything shuts down. Doctors don’t prepare you for this, probably because they are trying to protect you, but I think they need to be more up front. The tumour took away Sue’s body and mind and part of her personality. It affected her whole being. She couldn’t talk or even express how she was feeling. In the last few weeks the only way I could tell how Sue was feeling was by looking into her eyes – that was our connection, and how we expressed our love.” Read more
Sunita NathwaniMum-of-three Sunita was diagnosed with a type 2 meningioma brain tumour after an eye test at Specsavers. She underwent surgery and treatment but lost her battle less than two years later. Her husband Upin has been left with a void in his life and is comforted by the pride he feels in their talented and beautiful children.
“I have lost my partner in life and growing old without her is scary; such a big void has been left in my heart and in my life. However Nita has left me three amazing, talented and beautiful kids which I am so proud of. I know she is looking down and thinking the same. I can see her in all of them, so I will never have to look at a picture if I feel sad. I see them and I will smile.” Read more
Susan BlasottaSusan was diagnosed with ‘lesions on the brain’ in November 2010 and died just six weeks later, aged 42. As well as being a very special wife, mother-of-two and daughter, Sue was a committed and integral member of her North London, Roman Catholic parish and was always on hand to support, listen and help people in crisis, even when she had problems of her own.
“It was humbling how Sue faced death with such courage – she was truly amazing. Her most worrying thought was how her family would cope when she had gone – she said: “I have got the easy job, I am going to die – you have got the hard job, carrying on without me.” Read more
Taylan RawlinsonTaylan was an incredible boy who was sadly taken away from his family on 19th August 2009 at the age of just seven. He was a special little star full of love, warmth, joy and laughter. Just 10 months before he passed away, he was diagnosed with a rare form of brain tumour located in the brain stem. In January 2010 his family set up a Brain Tumour Research Fundraising Group and founded Taylan's Project Read more
Tom AttwaterTom stood by his girlfriend Joely when her daughter Kelli was diagnosed with cancer. He set about raising money for life-saving treatment abroad should Kelli need it but within months Tom was diagnosed with a brain tumour. He passed away in September 2015 at his home in the village where he grew up, less than two years after his marriage to Joely and four months after their longed-for son Fletcher was born.
“The most poignant moment on our wedding day was when Tom walked Kelli down the aisle. It was his idea: he wasn’t going to be around to give her away at her own wedding but this was something he could do now. My only regret is that, as the bride, I wasn’t there to see it! We do have some wonderful photos and videos though. We changed Kelli’s surname on that day as we wanted to be together as a proper family although we had no idea just how short-lived that would be.” Read more
Tom LubbockWriter and illustrator Tom Lubbock was chief art critic of the Independent until his death in 2011. Married to artist Marion Coutts and with a son Eugene, Tom lost his life to an aggressive brain tumour aged 53, just over two years after diagnosis. Tom’s book Until Further Notice I am Alive, (Granta, 2012) is a lucid and compelling description of that experience from the inside. After his death Marion went on to publish her acclaimed memoir, The Iceberg. (Atlantic Books, 2014). Read more
Trudy ShinglerTrudy was a 35 year old forensic psychologist, a wife and mother of three year old Phoenix. On 22nd October 2010, Trudy was officially diagnosed as having a Glioma tumour (specifically, an Anaplastic PXA grade IV). Less than four months later she passed away. Read more
Valerie was a healthy, fit mother of four grown-up children, who enjoyed golf, gardening and walking her dog when she suddenly started to experience a range of symptoms. Various doctors diagnosed stress and a trapped nerve, but two months later it was discovered that she had a grade IV glioblastoma multiforme. Her daughter, Helen, was able to accept and come to terms with the fact that her mother was dying and help Valerie on her journey of letting go.
“My passion for personal development helped me to handle Mum’s diagnosis and accept that her life was going to come to an end very soon. It also gave me the ability to support someone who was dying without always questioning whether I had done enough, or feeling guilty. I totally believe that guilt doesn’t change anything – there is no benefit in feeling guilty about what we should or shouldn’t have done, both pre and post diagnosis. It is guilt, along with other negative energies, such as anger and resentment, which make us feel out of control.”Read more
Vince Treherne-JonesLorry driver and father of two, Vince Treherne-Jones was initially diagnosed with a low-grade brain tumour just weeks after meeting new partner Gwyneth. Vince underwent surgery and treatment but his tumour continued to grow, eventually metastasising to other areas. The pair were married during his treatment and realised their dream of moving to Devon before Vince passed away in January 2015 at the age of 49.
“Throughout it all Vince remained brave and positive even when he was bent over in pain, unable to stand or walk. He died just three years and four months after we met. When he was first diagnosed people said I didn’t really know him and should walk away but I felt that he came into my life for a reason. By the time we married, he was disfigured by the tumour as it grew in his brain and affected his nerves. I didn’t care, all that mattered to me was that he was still alive.” Read more
Wynn HumphreysProud Welshman, avid football and motorcycle fan, husband and father-of-two Wynn Humphreys was 72 when he died in March 2017. He had been diagnosed with an aggressive Gliobmastoma Multiforme (GBM) brain tumour and, in line with his wishes, his wife and daughters didn’t discuss his prognosis with him, in order for him to enjoy the precious little time he had left.
“In line with his wishes, we never talked to dad about the fact he was dying. It was such a difficult time as we found ourselves not being able to talk about his prognosis in order to shield him from the truth but we went through with it because it was what he wanted. Not being able to talk openly to his friends about dad’s illness was one of the hardest things but we did it out of love for my dad and to respect his wishes.”Read more