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
Lord Stuart Polak CBE
Stuart Polak had been married to Charlotte for two years and they were expecting their first child when he was diagnosed with a brain tumour and given just six months to live. Fortunately, the high-risk surgery he underwent was successful. Nearly 30 years later, on his maiden speech in the House of Lords in 2015, Lord Polak made light of the permanent one-sided hearing loss which, along with partial facial paralysis, was a result of the operation which saved his life. He is working with Brain Tumour Research to share his story to raise awareness of the disease and bring pressure for increased investment to help find a cure.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
Mum-of-one Emma Selby, from County Durham, has been diagnosed with three brain tumours. Her first diagnosis came in 2017, when doctors discovered an inoperable glioma on her brainstem. Emma had radiotherapy but sadly, in December 2019, she got the dreaded news that a second glioma had been found close to the first. She had further radiotherapy but devastatingly, a third tumour, this time an astrocytoma, was picked up following a scan in June 2020. She has since had chemotherapy and surgery. Emma’s family are fundraising to pay for private cancer treatment, as they say their options on the NHS are running out.Read more
In August 2020, 58-year-old Jacquie Amor, from Kings Lynn in Norfolk, was diagnosed with three, inoperable secondary (metastatic) brain tumours. After a short period in hospital, Jacquie was too ill to return home and moved into a care home near her family in Leeds. Jacquie’s diagnosis came as a complete shock and has affected her both physically and mentally. She has been told she only has a few short months left to live.
Jade CookJust nine months after giving birth to her first child, 32-year-old Jade, from Yapton, West Sussex, was diagnosed with a brain tumour. A ward clerk at St Richard’s Hospital, Chichester, Jade had experienced a loss of sensation in her leg before her diagnosis in August 2019. Now, having undergone surgery, radiotherapy and chemotherapy, she is adjusting to a new normal with her husband Tom and their baby Rowan. Read more
James CrossleyLife was turned upside down in August 2000 when James, aged nine, was diagnosed with a brain tumour and underwent two huge operations. After the last operation he was left with weakness down his right side, severe speech problems, as well as educational and visual difficulties. Today, James’ story is one of hope as he overcomes his disabilities and looks to a more independent future. Read more
The first indication that anything was wrong was when James, a doctoral researcher and associate lecturer at the University of Plymouth, had a nocturnal seizure. It led to James, who had completed a tour in Afghanistan with the Territorial Army (Rifles), being diagnosed with a grade 3 anaplastic astrocytoma brain tumour aged 29, which developed into a glioblastoma multiforme (GBM) nearly five years later.Read more
James Hinnigan was enjoying life with his partner and their son in Australia when he was diagnosed with a low-grade glioma brain tumour. The family moved back to Greater Manchester just before Christmas 2015 to be near friends and family as they faced the uncertain journey ahead. In the months that followed, James underwent pioneering surgery and mobilised thousands of people to sign an e-petition calling for more funding for research. He’s faced many challenges along the way but now, in 2018, life is on the up again for him and his family.
“On the whole though, I am positive and try to remember that there is someone, somewhere, who is worse off than me. This is the hand I have been dealt and I have to get on and play the game.”Read more
James is a 39-year-old self-employed television sound engineer, who grew up and lives in south east London, where he counts himself lucky to be surrounded by lots of close family and friends. Previously a busy professional, with a hectic social life that came with his career in TV, everything changed for James in September 2018, when he was diagnosed with a brain tumour. Operations, radiotherapy and chemotherapy followed, and nights out to the pub during work trips away have since diminished. In November 2019, approaching the end of his planned 12 cycles of chemotherapy, James started writing a retrospective blog, to document his brain tumour story so far. He hopes by publishing his experiences he will help inform, entertain and inspire others who have received a similar diagnosis.Read more
University student James was diagnosed with a low-grade brain tumour after he started to have nocturnal seizures. He has managed to continue his studies in mechanical engineering and will run the London Marathon 2018 for Brain Tumour Research.
“The London Marathon has always been number one on my bucket list and as there is no better time than now I am going to be taking part this year. I will be running for the charity Brain Tumour Research. For obvious reasons it is a charity very close to my heart and, as well as raising money, I hope to raise awareness of the startling statistics around this disease.”Read more
In October 2011, aged 25, Jay was diagnosed with a grade 4 glioblastoma multiforme brain tumour (GBM4). He was given a prognosis of six months. More than six years on, while still on three-monthly scans, Jay is a devoted husband to Becky and dedicated father to Teddy, born in January 2017. He has a job he enjoys, working part-time as a graphic designer.
“Two weeks later we were given the histology results. Jay had a grade 4 glioblastoma multiforme. We went home in an agonising whirl to do our own research. It was not good reading. I quickly realised that the best way to cope was to look for the positives. I voraciously read the stories of patients who had good outcomes and ignored the negative ones. Regrettably, these were far and few between.”Read more