Our Young Ambassadors are a group of volunteers aged 18-25 who’ve all been personally affected by a brain tumour diagnosis. They play an important role in The Charity’s work. Being a Young Ambassador is also a great chance to learn, develop new skills and meet people of a similar age who’ve been through similar experiences.
Rachel, from Rotherham, was just 11 when she was diagnosed with a brain tumour. She applied to be a Young Ambassador in the hope of improving awareness and understanding about brain tumours and the impact they can have.
My diagnosis changed mine, and my family’s lives forever.”
Rachel
Rachel has a rare pineal region brain tumour, which was discovered on a day she was sent home from school early one autumn term. She had inexplicably lost her balance and was unable to walk straight: “like a 20-pint drunk,” recalls her mum, Bev.
Bev was immediately alarmed because she knew Rachel would never fake illness to get out of lessons. She rushed her straight to their GP surgery – “I didn’t even ring first” – where the doctor noticed Rachel had nystagmus – a condition that makes your eyes shake. “After the GP spotted that, we went straight down to the hospital, were seen by paediatrics, and she was scanned that afternoon. By 7pm, she was in a blue light ambulance and then in theatre for a drain and biopsy.”
Looking back over that summer, Bev remembers that Rachel struggled to ride a bike, in contrast to her twin brother. There was also a single bout of travel sickness. But other than that, her diagnosis came entirely out of the blue: “There were no headaches, there were no differences in gait or in walking. There was nothing, you know, and even then, that morning, she’d gone to school as normal.”
Continuing impact
Now 26, Rachel has had four recurrences of her tumour and several rounds of treatment. These have each had an impact on her quality of life.
After her diagnosis in 2011, she initially had debulking surgery and six weeks of radiotherapy. The tumour was stable until 2014 when Rachel had gamma knife surgery. Her tumour grew again in 2021 and 2022, so she had to have more gamma knife surgery.
Her most recent treatment in 2022 left her unable to walk and talk. She couldn’t look after herself and received rehabilitation in a dedicated centre for four months.
Rachel said: “When I was diagnosed my initial thought was ‘would I die?’ I now live with the side effects from harsh treatment, and these include terrible short term memory loss and fatigue. I want to keep going and do so many things, but sometimes I just can’t.”
Since then, Rachel learned to walk and talk again. She lives at home with her family and receives support from Personal Assistants who go out with her and support her in her Young Ambassador role. In December 2024, she had a stroke, and once again, had to begin the long battle to teach herself to talk again, sometimes using British Sign Language, which she learned at primary school, to make herself understood.
Becoming a Young Ambassador
Rachel wanted to use her role as a Young Ambassador to help advocate for other young people affected by brain tumours. She describes being part of the Young Ambassador scheme as “giving her life purpose again.”
Being part of a group of other people who “get it” and understand the challenges of living with a brain tumour has been rewarding in ways she could not have imagined: “Everyone just accepts you, you’re all part of the same team. The opportunities to travel, to do different things, like podcasts, and public speaking for example, have just been amazing. I wouldn’t really go out much otherwise, and don’t often get the opportunity to travel very far.”
Mum Bev agrees: “Rachel’s confidence has really blossomed since being on the programme, and you’ve got to bear in mind that during this period, not only has she been struggling with the long-term effects of the brain tumour and treatment, she’s also had a stroke. So to be able to carry on has been fantastic, and the support she’s had from the other young people has been brilliant for her.”
Rachel would like to see better signposting to charities like The Brain Tumour Charity or the Teenage Cancer Trust so that young people feel supported throughout their diagnosis. This is still something she grapples with daily. While she says the support she had as a child during diagnosis was good, and she praises her treatment team, she highlights the need for better transition to adult services.
She is supposed to have scans every six months, but they are never booked, leaving her mum, Bev, to chase them. She has also been taken off services that help her, like hydrotherapy, leaving her family to improvise with their own swimming sessions.
Rachel would also like to see clinical nurse specialists and counselling services given top priority to ensure that people with a brain tumour can have support navigating their diagnosis.
“Rachel has been an absolutely fantastic Young Ambassador, and we have been so lucky to have her as part of the cohort. Whether it’s bravely sharing her experiences with researchers in focus groups, sharing her story, attending events like The Big Weekend or online meetings shaping the work of the Charity, Rachel is amazing. I see Rachel as the glue to our programme. She is a wonderful friend and shining star. The definition of resilience. She rarely misses a meeting and always contributes, making everyone feel welcome. Thank you Rachel!”
Abi Hames, Senior Involvement and Impact Officer.
Looking to the future
Despite everything she has been through, Rachel remains cheerful and determined. She has an infectious giggle and a smile that lights up the room. When she reflects on her experiences, she always puts a positive spin on them. “I’m still here” is her mantra, and she is always looking out for opportunities to share her experience as a young person living with a brain tumour, to help and inspire others.
So what would she say to anyone thinking of applying to be part of our next cohort of Young Ambassadors? “Definitely apply. You’ll get so much out of it, learn new things, and make brilliant friends. And you’ll be amazed at what you’ll be able to achieve.”
Could you become a Young Ambassador?
Applications are now open for our 2026-2028 cohort of Young Ambassadors. If you’re aged 18-25 and have been affected by your own brain tumour diagnosis or a loved one has, why not find out what our Young Ambassador programme has to offer?