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
Former BBC correspondent and chair of BBC Children in Need, Rosie Millard, first realised something was wrong at the beginning of 2018, when she developed tinnitus in one of her ears. Doctors initially thought the ringing sound she was hearing was caused by a build-up of ear wax. Unsatisfied with the diagnosis, Rosie demanded an MRI scan, which revealed a large, low-grade tumour in her front lobe. As she is still coming to terms with her shock diagnosis and the surgery that followed, Rosie, a mother-of-four, is also feeling grateful that she has recovered well and is fighting fit – even going on to complete a marathon since her treatment finished.Read more
Eight-year-old Kyle Morrison was diagnosed with the least survivable of all childhood brain tumours six months ago. His devastated mum was given the nightmare news that he had a year to live. Now, half way through that “death sentence” she is desperately trying to raise the money needed for a clinical trial which she believes is their only hope.Read more
The youngest of four children (big brother Jordan is 16, Lillie, eight, and Sienna, five) Esmé, now three, was diagnosed with a rare high-grade form of ependymoma whilst still just one year old. GPs had previously diagnosed a sickness bug or urinary tract infection. Esmé underwent major surgery and is currently nearing the end of a gruelling 18 months on chemotherapy.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
For retired police officer Jim Murray, 53, and his wife Ally, it was a devastating blow to learn his brain tumour had returned. His tumour, a glioblastoma multiforme (GBM), brings with it the dire prognosis of just 12 – 18 months. Now two years after his initial diagnosis, Jim and Ally are making the most of every day by travelling and spending time with their three sons Callum, Simon and Richard, and their grandchildren.Read more
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
Jodie, 35, was diagnosed with a brain tumour and had surgery just before Christmas in 2016. Now, two years on from her diagnosis, she is celebrating a series of clear MRI scans, and is looking forward to a rather more relaxed Christmas with her partner Barry and their two daughters Ruby and Darcy.
“The positivity from my friends and family has helped me through the inevitable dark days and I’ve realised just how much I have to live for. I’m really looking forward to a stress-free Christmas; the past two years I’ve felt fraught with worry about my diagnosis and now, on the back of my positive scans, I think we’ll finally be able to relax and enjoy the day. It’s a very special time of year and I’m so grateful I’m here to share it with Barry and our girls.”Read more
Josie PhillipsIt took doctors five years to diagnose Josie with a grade 2 astrocytoma brain tumour. Four years later and a year after graduating from Medical School, Josie faced the devastating news that the tumour had become malignant. After two craniotomies, chemo and radiotherapy, and a round-the-UK sailing challenge to raise awareness, Josie, has had clear scans for the last five years. Now the mother of two young girls, Josie is determined to live life to the full for as long as she can.
“I am very conscious of how little is known about brain tumours and how there needs to be a huge amount more research into what causes them, how to prevent them and, of course, how to treat them.” Read more
When retired teaching assistant Joy, 59, began suffering from problems with her speech, she never imagined a brain tumour was the cause of her symptoms. Her diagnosis with a grade 2 meningioma in October 2017 came as a devastating blow to Joy, her husband Tony and their sons but fortunately, after surgery and radiotherapy, there is now no sign of the tumour. In February 2019, in recognition of her fundraising, Joy placed a commemorative tile on the Wall of Hope at the Brain Tumour Research charity’s Centre of Excellence in Plymouth, and she hopes that in sharing her story she will inspire other patients.Read more
Former teacher and now director of teacher training, Julie was diagnosed with a brain tumour after repeated headaches and visual disturbance. Her tumour, a low-grade meningothelial meningioma, was successfully removed during surgery and Julie, who is married with two grown-up children, is now back at work full-time.
“My crushing headaches and fatigue could easily be explained away as stress-related, exacerbated by upheaval and worry, or my age and perhaps the menopause. My dad had suffered a stroke at 52 – a similar age to me – and I began to feel anxious that perhaps that was happening to me too. I was amazed and astounded to be told I had a brain tumour, something which had never even been on my radar.”Read more
Julie CarterWhen 24-year-old student Julie Carter went for a routine eye test she didn’t expect them to find anything wrong. However, tests revealed she had a low-grade brain tumour and would need an operation to help control it. Now 11 years on since her diagnosis, she is still living with the tumour but is determined not to let it affect her life.
“I thought I was going to come out of the opticians with a lovely new pair of glasses, but instead I was referred to the eye clinic at Leeds General Infirmary. Something had been found during my field vision test and I had to see a specialist. That day in 2006 my life took a different course.”Read more