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
Dan was at university when he started to suffer from crippling headaches which led to his eventual diagnosis with a grade 3 ependymoma brain tumour. Ten years on, he has had surgery three times and undergone radiotherapy. Although he lives with the knowledge that his tumour could return, he is optimistic about the future, having just moved into a new flat with his wife and working as a parliamentary researcher at Westminster.
When 12-year-old George began having headaches, soon also accompanied at times with vomiting, alarm bells rang for his parents. They suspected he might have a brain tumour, but their fears were brushed aside and his symptoms put down to migraine. However, the couple persisted with getting a diagnosis and three weeks after he first became ill their worst fears were confirmed. Devastingly, biopsy results following surgery revealed George’s brain tumour was an aggressive glioblastoma multiforme (GBM).Read more
Iona Alford was just 22 when she was diagnosed with a brain tumour, but says that, despite the shock, in many ways it changed her life for the better. Following surgery to remove a rare ganglioglioma her prognosis is good and she is looking forward to a once-in-a-lifetime trip to Australia.
“After my diagnosis, I changed my job and booked a once-in-a- lifetime trip to Australia for six months. Although it’s a big step, I’m so excited to start this adventure and I know my illness inspired me to take that leap. For many people, travelling is about finding yourself but, for me, it’s about putting myself back together.”Read more
Jack Byam ShawIn May 1999, Sheila Hancock's grandson Jack was diagnosed with a brain tumour at just four years old. His mother, Melanie, was shocked at how long it took to diagnose him and at the nail-biting wait to determine the type of tumour and the treatment necessary. Reeling from the shock of diagnosis, they were delighted after several weeks of waiting to discover that they were one of the lucky ones - Jack's tumour was low- grade - and following five years of scans he is now scan free and living a normal healthy life. 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