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
Charlotte Barber defied the odds, living for 29 years after her brain tumour diagnosis when she had been given a 30% chance of surviving past the age of 13. She underwent treatment, which was cutting-edge for its time, at Addenbrooke’s Hospital in the late 80s, paving the way for future patients, and was part of the Childhood Cancer Survivor Study. Despite overcoming many hurdles and learning to live with the debilitating side effects of the disease, Charlotte sadly died on 17th May 2018 at the age of 37. Her mum Julie reflects on Charlotte’s journey and her desire to contribute to research in Charlotte’s memory.
“Her consultant has since told us that Charlotte was a pathfinder and a hero, and those undergoing treatment today owed her a great deal. She was a hero and my heart burst with pride to hear someone else say it. Her childhood was taken away from her by this cruel disease but she never once complained and that smile never faltered.”Read more
For 20-year-old Victoria, the hardest part of losing her Dad was the prospect of spending the rest of her life without him. Stuart Neill, aged 56, fell ill while working in Africa and, after being diagnosed with a type of brain tumour known as a metastatic renal cell carcinoma, sadly never returned home. The father-of-three, who had survived renal cancer in 2013, suffered dreadful complications from his brain surgery in Johannesburg and, tragically, never recovered. Now Victoria’s family are struggling not only with the sudden loss of their Dad but also the financial implications of losing their family’s income.
“The burden of Dad’s death is inconceivable. On top of losing a loving father, we had to sell the family home, belongings and tackle the financial impact of his death. He worked so hard so that mum could stay home and take care of us, however, now there is pressure on Mum to find a job so soon after losing him. We still have to be very careful with money, my brothers and I contribute towards helping us all get by.”Read more
After retiring from his job as a council manager Michael Shane devoted his time to caring for others. A volunteer for Age Concern, he went to the centre in Gateshead every Thursday to help entertain and look after elderly residents in the community. He loved to watch football, especially his beloved Newcastle United. He was fun loving, loved to play tricks and always had a smile on his face. However, in November 2015, it was Michael who needed care. Diagnosed with a glioblastoma multiforme (GBM), Michael passed away just five months later. Since his death, his daughter Diane, along with her husband, mother, friends and members of SS Fitness club have raised £11,000 for the Brain Tumour Research charity in one year. The fundraising has brought together members of her community whose lives have been affected by the disease.
“Dad’s diagnosis was traumatic for us all. Not least because he was the head of the family – he was always the one to look after us and, all of a sudden, the tables had turned. Dad was told he couldn’t drive and, for a man so proud of his independence, that was like losing a limb.”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
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.
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
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.