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
Ten-year-old Jude Upton was diagnosed with a brain tumour, later identified as a grade 4 medulloblastoma, following a trip to Specsavers on his eighth birthday in March 2020. The youngster, from Milton Keynes in Buckinghamshire, had been suffering from a loss of balance, sickness, headaches, tiredness, a loss of appetite and changes in his personality. He underwent a craniotomy followed by chemotherapy, radiotherapy and further chemo, after which his tumour was stable. Sadly, in March this year, further growth was detected. He’s now completed two more cycles of chemo and is awaiting his next scan.Read more
In February 2021, Tom Claypole, 40, from Swanwick in Derbyshire, started suffering from constant headaches. Tom, dad to Shadean, 21, and Chardonnay, 17, went to his GP and his local hospital but they all said he had migraines. In August, one of Tom’s colleagues saw him black out while he was driving a van. Shortly after, he fell over and had a seizure. Tom’s fiancé took him straight to hospital where he had an MRI scan which revealed that Tom had a glioblastoma (GBM) brain tumour. Tom’s family has now embarked on a mammoth fundraising venture for Brain Tumour Research, aiming to raise £100,000 in three years.Read more
Twenty-two-year-old Olivia from Warwickshire had an isolated seizure in 2007, when she was just seven. After a medical check-up at Telford Hospital, she was discharged with no cause for concern. Nine years later, she began to have seizures during the night, waking up not knowing what had happened and these extended into the day. After biting the inside of her mouth during a seizure she was taken to hospital where a scan showed a mass on her brain. Due to the complexity of her tumour, Olivia’s diagnosis is thought to be a low-grade glioma or dysembryoplastic neuroepithelial tumour (DNET) after five years of clear scans, she remains on watch and wait.Read more
Janet is one of three sisters who live in Northamptonshire who were all diagnosed with meningioma brain tumours. Sadly, she lost one of her sisters in May 2020 during the coronavirus pandemic. Janet remains positive and passionate about supporting research to find a cure.Read more
Forty-four-year-old Janet from Reading in Berkshire initially thought she was suffering from sunstroke. After phoning NHS 111, she was referred to Royal Berkshire Hospital for an MRI scan and a week after her symptoms started, she was diagnosed with a glioblastoma multiforme (GBM). Following debulking surgery at the John Radcliffe (JR) Hospital, Janet is now receiving palliative care and is currently undergoing gruelling radiotherapy and chemotherapy treatment which she is due to finish in early December. Here, Janet shares the story of her brain tumour journey so far and how she and her husband Steve broke the news to their two young children.Read more
Jay WheelerAlthough Jay's brain tumour was completely removed during surgery, he then had to undergo radiotherapy and chemo, leaving him with a number of different side effects. Despite his agonising ordeal he is looking forward to starting his degree course in Animation and Special Effects Read more
Labour Councillor and mum-of-three Jeanie Bell was diagnosed with two meningioma brain tumours at the age of 41. Her diagnosis came in November 2017, after years of suffering from a range of symptoms, including headaches, facial pins and needles and mood swings, which her doctors thought were peri-menopausal. Since discovering she had two, low-grade brain tumours, Jeanie set up a support group in her home town of St Helens in Merseyside, to help others on a similar journey. She is sharing her story to raise awareness of low-grade brain tumours and the profound impact they can have.Read more
Essex mum-of-two Jenny Cooper-Radley was diagnosed with a grade 2 meningioma following a trip to Boots Opticians in Chelmsford in October 2011. Her doctor, whom she had visited around five times in two months, had attributed her ‘feeling a bit hungover’ to possible vertigo, Meniere’s disease or benign paroxysmal positional vertigo (BPPV) and prescribed medication. It was only when the former nursery nurse began experiencing pain in her eyes that she made the opticians appointment which led to the discovery of her tumour. She went on to have a craniotomy but continues to suffer with debilitating facial pains and in July 2020 was told she had developed a new tumour, which is being monitored with regular scans. Now, having recently completed a Couch to 5k, the 49-year-old is training to run the London Marathon.Read more
Hard working wife and mum Jess Richardson was used to managing on her own while her husband worked overseas. He missed out on the birth of their daughter Isla-Rose, but was airlifted home when, out of the blue, Jess was diagnosed with a brain tumour. She took part in a clinical trial and then underwent Gamma Knife surgery, which to date has successfully shrunk the tumour by around two thirds. Jess believes Isla has been her saving grace because having her means that there is no other option than for Jess to be well. She will not leave her daughter without her mum; that’s non-negotiable.
“Now, with the great gift of hindsight, it’s hard to imagine how I could have been so calm about things. Darren was away, I had an eleven-month-old baby to look after but it never really crossed my mind that something might be seriously wrong. I had an MRI scan the first week in February and the call that changed our lives came the following day. You know where you think to yourself ‘knowing my luck I’ll find out I’ve got a brain tumour?’ Well, that’s what happened to me and it’s no joke. I was at home on my own late on a Friday afternoon when the consultant called to say they had found something on my brain and I needed to see my GP immediately. Darren was in Iraq and I sat with Isla on my knee as a doctor I had never met before told me I had a brain tumour. The doctor said he shouldn’t have been the one to tell me the news but, believe me, hearing the news has to be far worse than telling someone.”Read more
Jess TaylorJess was just 13 years old when she was diagnosed with a brain tumour. She has endured two craniotomies and numerous rounds of chemotherapy and radiotherapy. Despite her poor prognosis all those years ago, with the help of her neurosurgeons and doctors, Jess is now 19 years old and studying at college to become a beautician. Read more
Originally from Cleveland, Tennessee in the USA, 33-year-old Jessica Fukuchi moved to the UK in 2018 and now calls Coventry in the West Midlands her home. Over the last 21 years, she has endured a total of 30 surgeries after being diagnosed with a low-grade astrocytoma when she was just 12. Now, Jessica wants to share her story to help others living with their own difficult diagnosis.Read more
Jim started to experience symptoms after the UK went into lockdown during the coronavirus pandemic. He was staggered to be told that - like his wife 18 years previously, whom he has cared for ever since - he had a brain tumour. Despite the burden placed on the NHS as a result of Covid-19, Jim was diagnosed, underwent surgery and started treatment within weeks. He is sharing his story of optimism to bring hope to others.
Jo struggled to receive the right help from her GP when, in her early 40s, she suffered from bouts of pain and dizziness. She opted to go private and was diagnosed with a haemangioblastoma in her cerebellum. Balancing her distrust of doctors and undergoing brain surgery was a paradoxical conundrum. The difficulties she experienced during and after surgery motivated her to write a book about her challenges and the importance of a positive attitude.
“I believe that I’m a much stronger person. I feel a lot of gratitude and don’t stress too much. I’m quite emotional and cry a lot but then I also think: why not? I went through a lot, I survived brain surgery, I have a lot to say.”Read more