In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
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
Andrew Mackie from Dinnet in Aberdeenshire, was a fun-loving 44-year-old who loved motorbikes. When he started having seizures in August 1999, his GP thought he may have epilepsy but six months later, when his eyesight started to deteriorate, he had a scan which revealed he had a high-grade astrocytoma brain tumour. The lorry driver and father of two girls underwent radiotherapy, surgery and palliative chemotherapy. He died at home on 21 February 2003, with his adoring family by his side.Read more
Briar Butler from Kendal in Cumbria, was just 30 when, in June 2018, she received the devastating news that she had an incurable brain tumour. Her diagnosis came after years of suffering from debilitating mental health problems. Briar, a trainee accountant and keen pole dancer, underwent surgery to debulk the tumour and several more operations after she developed infections in her skull. The mum-of-one spent the final few months of her life in a care home, which meant she was unable to see her loved ones when restrictions were imposed during the COVID-19 pandemic. Briar died on 17 August 2021, leaving her four sisters, her mum Beverley and her six-year-old Noah devastated.Read more
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.
Ava BallAva’s mother was alarmed to find a lump on the back of her two-month-old baby’s head, but was told by her GP it was a soft spot. The lump had grown to the size of a tennis ball when Ava finally had an MRI scan, aged seven months. A biopsy determined the lump was a primary malignant melanocytic brain tumour with intra as well as extra-cranial components. After surgery, there was nothing more which could be done to save little Ava and she passed away in her mummy’s arms, aged just eight months.
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 was just 11 when he started to experience symptoms including sickness. A month later he was diagnosed with a glioblastoma multiforme and his devastated mum was told he had less than two years to live. He underwent surgery and treatment, but sadly died just eight months later in December 2019. His twin brother Jack was diagnosed with leukaemia shortly afterwards and is now undergoing treatment.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.”
We are grateful to Bernice who worked with us in September 2018 to share her story here. Sadly, she passed away 18th February 2019. We remember Bernice as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
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