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
Lily, from Eastwood near Southend in Essex, was just 13 when she was diagnosed with diffuse intrinsic pontine glioma (DIPG). Her family, which includes her parents Diane and Martin and her younger brother Josh, were told that the tumour was inoperable and the only treatment available was radiotherapy to give her a few extra months until the tumour began to grow again. They were told to go home and make memories. The Wythes have since found a promising clinical trial in the United States and are hoping to raise the hundreds of thousands needed to secure what could be life-saving treatment.Read more
Lyra was just five months old when she underwent emergency surgery to remove her tumour, a low-grade choroid plexus papilloma. Initially misdiagnosed as a virus, her symptoms had included a loss of appetite and vomiting. Now six, Lyra has released a cover of Christmas classic When A Child is Born, with funds being donated to the charity Brain Tumour Research.Read more
Laura was just 21 when she was diagnosed with a low-grade brain tumour. The swimming instructor and keen horse rider had suffered from debilitating symptoms for more than two years, including migraines, sickness, and psychosis, which were misdiagnosed as a mental illness. A year on from her diagnosis, she is still adjusting to life as a brain tumour patient. She’s at a crossroads as she decides whether to have further treatment. Her plans of moving into her own home and thinking about a family have been thrown into the air.Read more
Police officer Jim Murray, 52, is living with a glioblastoma multiforme (GBM), the most aggressive form of brain cancer. He has undergone surgery, chemotherapy and radiotherapy. Despite the difficult times, Jim and his wife Ally are determined to make the most of every day, by travelling and spending time with their three sons Callum, Simon and Richard, and their grandchildren.
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
Katie had only been at nursery for a few short weeks when she was diagnosed with a brain tumour. Within hours she was undergoing emergency surgery but the tumour, although low-grade, is buried deep within her brain making it inoperable. She has endured 18 months of chemotherapy and three months of specialist radiotherapy in America which proved unsuccessful. Once again she is back on chemo and no-one knows what the future may bring.
“Life is so precious and, for us, fragile. We try not to look too far ahead and cling onto the fact that, with research, every day presents the possibility of better treatment options for Katie in the future. It is vital that we have hope and that we live in the moment but I do find it so incredibly hard to do. One of the biggest changes we have had to make since Katie’s diagnosis is to live with uncertainty, it is awful because nobody can tell us what the future holds.”Read more
Katie SmithSpecial needs teacher Katie Smith, 31, was struck down with debilitating headaches just weeks after returning from her honeymoon. After numerous visits to the doctor and hospital appointments, her symptoms were finally diagnosed as a brain tumour and Katie was given the agonising prognosis that she may not live to see her 40th birthday. Together with her mum who is battling Non-Hodgkin lymphoma, Katie has written a bucket list and has been able to cross off “publish a book” after winning a children’s writing competition launched by ITV’s Lorraine Kelly. Together with husband Luke, she is facing a dilemma over whether to go ahead with their plans to start a family.
“I feel we need something to live for but do I really want to bring a child into the world knowing that, potentially, it’s going to lose its mum at a young age? Or perhaps we should try to live our lives the way we would have done had we not known about the brain tumour. In order to protect the unborn child, you can’t have an MRI scan until you have passed the 12-week mark. The hormones of pregnancy could cause the tumour to grow and, if it came to it, would I choose myself over my baby? It is impossible to imagine, although I know what Luke would say. I had always imagined myself with three kids but now we will be lucky to have one. It is a very tough decision and one which we will make together.” Read more