18 April 2024

Together for Ellie

A young woman living with cancer wants everyone to know how it affects young people differently than adults this Teenage and Young Adult Cancer Awareness Month.

The support of a unique partnership between Teenage Cancer Trust, Young Lives vs Cancer, and the Ellen MacArthur Cancer Trust is helping 22-year-old Ellie feel less isolated and adjust to her ‘new normal’.

She was diagnosed with synovial sarcoma in 2019, a rare kind of soft tissue cancer which was found in her wrist. Having gone undetected, it spread, leading to scans every three months, surgeries every six months, and chemotherapy, all while she is studying for a degree in psychology.

The frequency of surgeries on her wrist led to her requesting it be amputated. She said: “I was having wrist surgery every year until I finally managed to persuade them to just cut it off. A week later, I was back at university. I was bored at home, so I thought I might as well go back.”

Since her diagnosis, Ellie has been supported by Teenage Cancer Trust, Young Lives vs Cancer, and the Ellen MacArthur Cancer Trust, three charities who, in partnership, improve the experiences of young people with cancer during and after treatment. Around 2,300 young people aged 15-24 are diagnosed with cancer every year.

Speaking during Teenage and Young Adult Cancer Awareness Month, which takes place every April, Ellie emphasised the differences between being diagnosed young and as an adult.

She said: “Most people my age are struggling to work out how to be an adult, and I’m thinking, how do I be an adult in this new scenario?

“When you’re young, your life is still ahead of you. When I was diagnosed, I thought, am I actually going to live long enough to graduate? Am I ever going to be able to be in a relationship? Are my friends going to treat me the same?

“I often don’t tell people I have cancer because they suddenly stop inviting you to things, or they think you aren’t able to take part in things. Let me make that choice.”

Working together

When she was in hospital, she says she was the youngest person on the ward by ‘about four decades’. Having the support of specialist cancer charities made her feel less isolated at a time many young people are still discovering and working out who they are.

Young Lives vs Cancer provided Ellie with a social worker, Marc, who helped her with some of the barriers a diagnosis brings.

When her school didn’t know how to accommodate someone with cancer, Marc provided them with support. He is guiding Ellie through the unfamiliarity of applying and interviewing for jobs, and making sure she knows her rights as a disabled person. He also made the process of applying for benefits easier, something Ellie says is particularly difficult.

Because a bulk of her treatment coincided with Covid-19 lockdowns, she was not able to have her parents with her in hospital. Teenage Cancer Trust’s nurses made she sure was not alone and would attend appointments with her, and also helped explain to Ellie’s parents any news or updates.

Teenage Cancer Trust continues to support Ellie, who says she has them on ‘speed dial’. As well as providing specialist nursing care, the charity organises social activities designed to bring people with cancer together and ease the sense of isolation a cancer diagnosis at a young age can bring. Earlier this year Ellie went with the charity to the Crystal Maze experience in London, where she says she was never made to feel left out because of her amputation.

Having been on two transformational sailing adventures with the Ellen MacArthur Cancer Trust, she said being on the water reminded her that she is not just a cancer patient.

It is also where she met someone else with the same diagnosis for the first time, who she affectionately dubbed her ‘tumour twin’, which made her feel less alone. When she is sailing with the charity, it is a chance to ‘experience life without thinking about hospital’.

Reflecting the struggles of having cancer as a young person, when asked what advice she would give to someone who has just been diagnosed, she said: “Don’t lose your identity to cancer. Even if it is just a little thing, like if you like reading, have some books or audiobooks with you all the time. Don’t become a statistic, you are still a person.”

A pivotal time

Jules Worrall, Director of Engagement, Teenage Cancer Trust, said: “Cancer doesn’t just devastate a young person’s health. It threatens to take away everything they care about – their identity, their independence, and their dreams.

“Teenage Cancer Trust, Young Lives vs Cancer and Ellen MacArthur Cancer Trust are three amazing charities working together to provide the best possible support and opportunities to young people affected by cancer. Ellie’s story highlights just how important that support can be, and we’d like to thank her for sharing her story this Teenage and Young Adult Cancer Awareness Month.”

Helen Gravestock, Director of Policy, Communications and Voice at Young Lives vs Cancer says: “Getting a cancer diagnosis at any age is tough but at a time when teenagers and young adults should be forging their paths and figuring out who they are, it can feel like it takes away their voice and independence. This is why Teenage and Young Adult Cancer Awareness Month is so important as it creates a space for young people, like Ellie, to share their voices and experiences and raise awareness of the unique challenges they face.

“Our social workers are there to support young people to make sure they get the right care and support at the right time and that every young person feels empowered during their treatment.”

Frank Fletcher, Ellen MacArthur Cancer Trust CEO, said: “Teenage and Young Adult Cancer Awareness Month is a chance to talk about what a lot of young people wish everyone knew about cancer at their age, like how it often leads to feeling isolated, lower educational achievement, body image issues, and difficulties with friendships and relationships.

"Using sailing and outdoor adventures, the Ellen MacArthur Cancer Trust brings together teenagers and young adults like Ellie at this pivotal time so they can laugh, rediscover their independence, and feel optimism for the future as part of a community with other young people who 'get it'. That support allows them to re-establish their purpose and place in the world and believe in a brighter future living through and beyond cancer.”