In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
Recently published stories
Tom McEnteeTom McEntee, a banker who lived in Epsom, died just two years after his diagnosis with a glioblastoma multiforme (GBM) – a highly aggressive type of tumour – in November 2015, despite enduring several operations, chemotherapy and radiotherapy. He was 67 and left his wife Anne, their three children Niamh, Owen and Colette, and five grandchildren. Read more
Diagnosed with a multifocal grade 4 glioblastoma multiforme (GBM) in December 2018, 71-year-old Bob Witherspoon from Whitley Bay lost his life to this aggressive brain tumour just four months later. At his funeral, rather than flowers, his family requested a collection for Brain Tumour Research. Having raised over £700 to help fund research to prevent other families from going through the pain they have suffered, they now want to raise awareness of this cruel disease, by sharing their heart-breaking experience.Read more
Katie DeanKatie Dean was just six years old when she died of a brain tumour. Her diagnosis came after suffering from terrible headaches, which were dismissed as migraines for several months. Though it’s been 16 years since Katie died in July 2003 her dad Scott, an officer with Staffordshire Police, still remembers losing his darling daughter as if it were yesterday. Read more
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.”
Director Adrian Vitoria was shooting a film in the States when he was diagnosed with a brain tumour. He underwent surgery and self-funded pioneering new treatment, continuing to work on what was to be his final project while having chemotherapy. Adrian returned to Suffolk in the later stages of his illness. He passed away in November 2016 at the age 48.
“I don’t think people are aware of how cruel this disease is. It was torture for me to watch as Adrian was robbed of his mobility and his faculties especially as he was such a great communicator. He became bedridden, unable to even lift his head. It was an agonisingly slow decline as my brother became locked-in as the tumour grew.”Read more
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
It seemed nothing would tear childhood sweethearts Sandra and Alan May apart. After 30 years of married life, they were given the devastating news that Alan had a highly aggressive brain tumour. Just 10 months later, in August 2016, he passed away, leaving his parents, sister, wife, two sons and three granddaughters. Facing life without her soulmate, Sandra has run a fete in memory of her husband for the past three years, alongside a football tournament organised by her son, Shane, and has helped to raise around £5,400 for the Brain Tumour Research charity.
“My grieving process began as soon as Alan was diagnosed. It felt like somebody had ripped my heart out and, when I look back, the whole period was a total blur. It seemed as if I was on standby. My life was completely out of control, but I had to stay strong and put on a brave face for Alan. In the final days I had to agree to Alan’s wish, to stop treatment, so that he could pass peacefully away. It felt like an eternity but it was the last act of love.”Read more
Alan NeedhamAlan was born and bred in Doncaster and worked for the civil service for over 30 years. He was very proud of his two sons, Darren and Andrew, and his three grand-daughters. Never having been a drinker or a smoker, Alan 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.
“Alan had a CT scan and could see for himself there was a big white lump in his brain. He got his piece of paper again and wrote, “I can see that big white lump. I know I haven’t had a stroke.” Read more
Alexander Paul from South London was 18 when he addressed the 2014 Conservative Party Conference and described his experience of policing policy. At the Conservative Party Conference in 2017 Theresa May informed her party that Alexander had died earlier that year from a brain tumour. Joanna Brown tells the devastating story of her son’s illness, the awful impact on her and the loss to society of a gifted individual who had so much to give.
“It is this sense of crushing loss, this waste of potential, that haunt my days. He did so much but could have done so much more. I did everything I could but I couldn’t save my son and our tragedy is a wider tragedy as society needs people like my son, Alexander.
I am angry and full of what ifs but we have his poetry, his humanity and his spirit as his legacy. We didn’t discuss his mortality, he didn’t leave us letters but he left us his prose and that comforts me. A book of his work was published a year on from his death and he would have been proud of that.”Read more
Our Fundraising Group, Alexandra’s Angels, is inspired by the story of Alexandra Foulis who died at the age of 24. Known to loved ones as Ally, she was a fun, outgoing and confident young woman whose life ended far too soon. She underwent surgery, radiotherapy and chemotherapy to halt a grade 3 astrocytoma but Ally passed away in August 2011. Through Alexandra’s Angels, her sisters Melissa and Rebecca are keeping Ally’s memory alive and funding the fight against brain tumours in her name.
“Not only had the tumour returned but it was back larger than before, now measuring 7cm. What’s worse, it was inoperable because it was too close to the nerves that controlled her breathing and heart-rate. We were all devastated to learn the tumour was now terminal. Ally being Ally, tried to lift the mood, saying: ‘Well, it ain’t over till the fat lady sings, and I ain’t singing yet!’”Read more
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.
Andrew Atkinson-Whitton loved life. In his 37 years, he touched so many lives with his infectious smile and happy-go lucky nature. Andrew kept smiling even when he was diagnosed with a grade 4 glioblastoma multiforme (GBM) and had to undergo intensive surgery and treatment but the tumour was too aggressive. He died 20 July 2018, just 14 months after diagnosis, leaving his husband Carl, mum Jill and brother Robert.Read more
In just 18 months, Andy Graham’s life had changed beyond recognition. The 52-year-old was diagnosed with a low-grade haemangioblastoma and, despite surgery and treatment, he suffered unimaginable trauma and distress as the tumour continued to grow. Leaving behind his wife and two sons, Andy sadly passed away on New Year’s Eve 2017.
“When the operation finally went ahead in August, Andy’s ordeal didn’t stop there. He was in theatre for 11 hours and I received a call from the surgeon saying ‘if I carry on I’m going to kill him.’ They had only touched the tumour and so much blood flowed that they spent hours mopping it up. Andy had psyched himself up for this surgery for so long and it had been a disaster.”Read more
Andy Watts was 54 and living in Ipswich, Suffolk, when he was diagnosed with a glioblastoma multiforme (GBM) following surgery which included signing up to take part in a trial of 5-ALA, the “pink drink”. A positive and upbeat person, Andy tried to jolly his family along with jokes. Although his loved ones knew his tumour was incurable and terminal, nothing could prepare them for the fact they lost him just over five months later.Read more
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
Becky 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 Becky’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. Becky 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 Becky 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
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.”
Sadly, Bernice passed away on 18th February 2019. 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.
Former headteacher, Bernice McCabe OBE, has instilled one essential piece of advice in her pupils: you have to rewrite the story when life takes an unexpected turn. Little did she know, Bernice would need to apply this lesson in her own life when, at the age of 65, she was diagnosed with a glioblastoma multiforme (GBM). One craniotomy, one surprise proposal, and several courses of treatment later, and Bernice is as resilient and optimistic as can be.
“A CAT scan confirmed I wasn’t suffering from a stroke but something else was happening. I was transferred urgently to Addenbrooke’s Hospital with Rod driving separately behind the ambulance, worrying that I wouldn’t be alive when he met me there.”Read more