Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Recently published stories
Private dental hygienist Emma Taylor was 34-weeks weeks pregnant when she was rushed into hospital suffering from a catastrophic brain bleed. It was later revealed this had been caused by a brain tumour growing at the base of her skull. The 33-year-old, of Chelmsford, Essex, was put in an induced coma before giving birth to her baby by emergency caesarean. She remained unconscious for weeks and is still unable to talk but communicates using head and hand movements, as well as via a computerised device. To progress her recovery, her partner has set up a GoFundMe page to help fund a bespoke rehabilitation programme.Read more
Operations director Simon Penwright was diagnosed with a multifocal glioblastoma (GBM) after waking with a severe headache and a foul but inexplicable taste and smell in January. The 52-year-old, who works for a manufacturing machinery company and lives in Stewkley, Buckinghamshire, has been given a prognosis of just 12 months. He underwent surgery in February followed by three weeks of high dose radiotherapy and chemotherapy. He is currently undergoing further chemo, having just completed his second round of temozolomide.Read more
Archie Siddall, 24, from Eckington in Derbyshire, started becoming forgetful in September 2022. His GP said it was because of stress but then Archie started getting severe headaches. After going to Accident and Emergency he was told he had a migraine but a second visit, which included a CT scan, revealed he had a glioblastoma (GBM) brain tumour. Part of the tumour was removed during surgery, and Archie completed six weeks of radiotherapy and chemotherapy in January; he is now on six cycles of tablet-form chemotherapy. Archie’s mum, Anne Siddall, is taking on the Jog 26.2 Miles in May Challenge to raise money for Brain Tumour Research.
Caroline was 13 when she was diagnosed with a pituitary gland brain tumour after her mother finally managed to persuade doctors to take her worrying weight gain and growth seriously. For a number of years, she had been told to get Caroline to lose weight. Caroline underwent surgery twice because the tumour returned and now, aged 26, she will have to take medication for the rest of her life after her pituitary gland was damaged during surgery.Read more
Carrie-Ann Greenwood, from Holywell in Flintshire, North Wales, was 36 weeks pregnant when a sudden loss of vision on her right side prompted her to visit her optician. She was referred for an MRI scan, which revealed a golf ball-sized tumour on her pituitary gland.
The diagnosis in May 2016 led to an emergency caesarean section to deliver her daughter Cerys, followed by brain surgery just days later.Read more
It took four months of headaches gradually getting worse before Catherine was finally diagnosed. One day she had such blinding pain on the left side of her head that her husband called an ambulance and she was taken to A&E. Catherine was given a CT scan, leading to the discovery that she had a brain tumour, which later turned out to be a glioblastoma multiforme (GBM).
Mum-of-three Catherine Wilcockson had not been feeling herself and was mistakenly prescribed anti-depressants to treat her symptoms. After a couple of episodes of ‘blacking out’ and then a massive seizure in May 2019, it was finally discovered that she had a brain tumour. The 37-year-old from Sheffield has undergone an awake craniotomy, radiotherapy and chemotherapy and, since her recovery, has dedicated herself to fundraising for Brain Tumour Research. Remarkably, Catherine feels like her diagnosis has given her a new lease of lifeRead more
Catrin IrelandNumber 13 definitely turned out to be unlucky for me – I was diagnosed with a meningioma brain tumour on our 13th wedding anniversary. Surgery left me with vision and balance issues – I feel very dizzy walking any distance and suffer with extreme fatigue which means I regularly find myself needing to sleep during the day. Obviously, I had to give up my driving licence. I now get around on a mobility scooter which isn’t what I ever imagined I would be doing aged 41 as I am now.
“It seemed completely surreal when I heard the words ‘brain tumour’ as that thought hadn’t even entered my head. I found myself pacing the corridors of the hospital, crying and swearing (which isn’t like me), while my husband kept trying to hug me. The date was the 23rd May – a day I will always remember because we should have been celebrating our 13th Wedding Anniversary!” Read more
After suffering with migraines during his recovery from leg lengthening surgery, in January 2020, Chae from Bude in Cornwall was given a CT scan which showed a lesion on his brain and he was diagnosed with a rare pilocytic astrocytoma. Inoperable due to its location, Chae had a biopsy which showed the tumour, initially thought to be grade 4 was in fact low-grade and he received combined radiotherapy and chemotherapy treatment followed by a gruelling six months of chemotherapy. After having to give up his dream of playing rugby professionally, 22-year-old Chae now relies on the full-time care of his mother, Maggie and is left with limited mobility and sight problems. Chae wants to share his story to help raise awareness of what it’s like to live with a brain tumour to help people understand how they can support a loved one after diagnosis.Read more
Charlie BoutwoodCharlie was the much wanted son of his parents. They already had two daughters and he completed their happy family. At 20 months he faced the terrifying prospect of surgery to remove an enormous and malignant brain tumour. Miraculously he made a remarkable recovery. Read more
Having ruled out meningitis as the cause of his headaches and vomiting, 10-year-old Charlie, who has a twin sister, was scanned. A mass was discovered which turned out to be a craniopharyngioma brain tumour. He underwent surgery and proton beam therapy and is now on hormone replacement medication and hoping he won’t need further surgery or treatment.Read more
Charlie CoxCharlie Cox, from Morden, was just eight months old when he was diagnosed with a brain tumour. Now a bouncy, fun-loving eight-year-old, his tumour has recurred three times. He has faced countless hospital appointments, operations and chemotherapy throughout his childhood but his mum Kirsty, 32, is desperate to keep life for Charlie and his brother Freddie, four, as normal as possible. Read more
Charlie PudneyCharlie was just seven-years-old when he was diagnosed with an ependymoma. The tumour was successfully removed in surgery but, as there was a high chance of regrowth, Charlie and his family travelled to the States for nine weeks of Proton Beam Therapy. Now back at school and enjoying football once more, Charlie is well and undergoes regular scans. The experience has changed the life of his family forever.
“Charlie is the same little boy as he was before although, emotionally, the experience has changed us. We live for now and don’t take anything for granted. I am angry and frustrated to think that brain tumours kill more children and adults under the age of 40 than any other cancer … yet just 1% of the national spend on cancer research has been allocated to this devastating disease. This is such a complex disease and although I understand this makes diagnosis and treatment so difficult, it affects so many young people that this is precisely why more needs to be done.”