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
Rosie WilsonJust a couple of months after her wedding, Rosie, then a 31-year-old children’s nanny, was told she had an aggressive and incurable brain tumour. She was given a survival prognosis of 12 to 15 months, but puts her long-term survival with a glioblastoma multiforme down to taking part in some observational research of repurposed drugs at the private Care Oncology Clinic in London. Read more
Lynne Collins, 61, is undergoing her fifth round of chemotherapy to treat her glioblastoma multiforme (GBM) – the most aggressive form of brain cancer. She has already endured surgery and now faces the difficult decision of whether to undergo radiotherapy which could leave her blind. As a former advanced nurse practitioner, she is under no illusion of how uncertain her future is.Read more
Just three weeks after starting her new job, Kirsty Barton, 28, was diagnosed with a brain tumour. The mum-of-two endured surgery in May 2019 which removed most of the tumour and now she is doing well. Kirsty’s diagnosis made her realise how precious life can be and she hopes that other patients will be inspired by her story.Read more
Grace DalyA healthy 15-year-old, Grace found herself with the devastating diagnosis of a brain tumour after a short bout of headaches, dizziness and vomiting.
After undergoing surgery, chemotherapy and radiotherapy to eradicate her medulloblastoma, Grace has now been clear for seven years, and is a nurse, inspired by the amazing care she received during the battle with her tumour.
“It’s a totally devastating thing to lose your hair when you’re 15 when the way you look is so important.” Read more
Grace ThoburnGrace and her husband-to-be bonded over the scars on their skull – she had gone through brain tumour surgery and he had a bone-anchored hearing aid fitted. They are now expecting their second child and, as a patient representative on the Tessa Jowell Brain Cancer Mission, Grace is helping to shape the future for patients. Read more
Pevensey dad Graham Wood, 35, was diagnosed with a grade 3 anaplastic astrocytoma five years ago. Having outlived his bleak prognosis of just three years, he is determined to make the most of every day with his wife Amber and their five-year-old son Reuben.
Gruff CrowtherSchoolboy Gruff Crowther was diagnosed with a brain tumour after minor but repeated difficulties with his eyesight. At the age of seven, he was the youngest patient to attend a reception at Speaker’s House, Westminster, in March 2016 when he joined the charity Brain Tumour Research in calling for more funding for the devastating disease.
“We have been very open with Gruff right from the start, telling him right from day one that he has a tumour and that means a lump of badly behaved cells which are reproducing incorrectly. He is aware that there are different types of brain tumour and different types of cancer. While Gruff’s tumour is low-grade we mustn’t been fooled into thinking that means it is benign – we are aware that the rate of growth can accelerate and things can become problematic. Left untreated, Gruff’s tumour would definitely have caused more problems as it spread. So far, his scans have shown the tumour has reduced in size and, for now, things are looking positive.”
In August 2009, Harry Broadbent was sailing in Cornwall when a consultant rang to tell him that a brain tumour was the cause of his epileptic seizures. Surrounded by strangers, 25-year-old Harry was suddenly faced not only with an uncertain future but with the distressing prospect of telling his partner and family. With the love and support of his wife, Harry has defied his original prognosis but the tumour casts a constant shadow over the life of his family.
“Back in Edinburgh, I noticed an NHS letter come through the letterbox and I asked Harry to open it to read the results. He hadn’t been able to tell me about that phone call yet, so when Harry sat me down and said ‘it’s not good news’, I was in complete and utter shock. Harry was so emotional…”Read more
Harry MockettMusician Harry Mockett, 20, from Northampton, was diagnosed with a craniopharyngioma in May 2018, after suffering from vision problems. The tumour damaged Harry’s pituitary gland and he developed life-threatening complications from the surgery he needed to save his life. Thankfully, with the support of parents Sue and Ian, and sister Rosie, Harry is now doing well and is looking forward to releasing his debut EP ‘H.I.M.’ in June 2019. Read more
Harry St Ledger
Six-year-old Harry was diagnosed with a suspected diffuse intrinsic pontine glioma (DIPG) after what should have been a straightforward procedure to fit a grommet in his ear revealed a sinister growth in his brain. His tumour type has a shockingly poor prognosis and limited treatment is available. There is no option for Harry who will battle for his life dressed as Spider-Man, his favourite superhero.
“I am shocked to learn that brain tumours are the biggest cancer killer of children and adults under the age of 40, yet so many people still think it is leukaemia which is killing more of our precious children than any other form of this hideous disease. I am angry to think that Harry will have to live away from the security and comfort of his own home during treatment and I am frightened to think of what lies ahead.Read more
Heather TurnerHeather was 24 when she was diagnosed with an acoustic neuroma, a low-grade brain tumour which caused partial hearing loss. The only treatment option was surgery but complications caused nerve damage leading to life-long difficulties including facial palsy and the loss of sight in one eye.
“It took me ten years to recover from the damage caused by surgery to remove my brain tumour. There have been times when I’ve wondered if life was still worth living. Although I have lost count of the number of operations I have had to make me look ‘normal’, I now feel as if the worst thing that ever happened to me has changed my life for the better.” Read more
Helen worked with us in December 2015 to share her story here. Sadly, she passed away on 18th June 2019. We will remember Helen as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
New mum, Helen Legh, a BBC radio presenter, feared her baby daughter Matilda wouldn’t survive. Now five, Matilda is thriving, but Helen faces the grim reality that she won’t see her daughter grow up and is making the most of whatever time they have left together. She is also creating a treasure chest of precious mementoes for Matilda to cherish when she is gone.
“Even my worst fears hadn’t prepared me for this. I immediately thought of my Matilda, then just four years old, who had only recently started at school. How long was she going to have a Mummy? I was so sad to think how I was never going to see her grow up, or get married, how I was never going to be a Granny. And more to the point, how were she and her Daddy going to cope when I died?”
Professional dancer Holly Dooley began experiencing mild seizures whilst on a tour of Russia. Having recently got married and looking forward to starting a family, her world was thrown into turmoil as it became clear from an MRI scan, that the seizures were caused by a tumour on the front right temporal lobe of the brain. Having endured numerous operations and radiotherapy over the last four years, Holly remains determined to stay positive and enjoy her life.
“It was time for my career as a professional dancer to end. I have achieved some amazing things over the years but having to close the curtain on the job I loved was heart-breaking.”Read more
Husband, father and grandfather Ian was 55 was when he was diagnosed with a low-grade brain tumour. He underwent surgery and was able to return to work but began to experience seizures, now controlled by medication, as the tumour grew back. No other treatments are available and further operation to de-bulk the tumour is seen as a last resort.
“Telling my children I had a brain tumour is, without doubt, the worst thing I have ever had to do. I can’t bear to see them upset and it makes me sorry to think that their lives are tinged with sadness because of me but, it is what it is; I am still here and determined to enjoy whatever time I may have with them. For a while the tumour was dormant and like a walnut in my brain but now it is growing once more. There are no other treatments other than a de-bulking operation which would be the last resort. In many ways I feel as if a breakthrough with a new drug is the only hope I have and that is why the research being funded by the charity Brain Tumour Research is so vitally important.”Read more
Ian lives with his wife, Debi-Ann, and their beloved dogs. He believes in healthy living and follows a strict nutritional plan. Before he was diagnosed with a grade III oligodenroglioma, he had never had any serious illness or been admitted into hospital.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
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
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
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
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
At the age of 59, Jenny Lambert received the news that she had a grade four brain tumour which had probably been growing since her teens. She feared she wouldn’t live to see the birth of her first grandchild but now, 18 months later, Jenny is back on her feet and looking at life from a new, uplifting perspective.
“Of course, there are parts of my old life I miss… but there is still so much that I can do and that’s what I choose to concentrate on. I now get to babysit my grandson, James, who I thought I would never meet, and that to me that is just so special. You would think that a brain tumour diagnosis would have completely turned my life upside down but I’m so fortunate to be able to say that it hasn’t. Although I can’t do everything that I used to, I’ve ‘learned to dance in the rain’ and not even a brain tumour can spoil things for me now.”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
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
John StuartJohn had an operation to remove his brain tumour in 2004 and ever since, his scans have revealed no evident tumour. He feels very lucky, not only to have survived, but to have been able to rebuild his life and return to work, albeit not in the same capacity as before. 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