Age: 16

Cancer type: soft tissue sarcomas

“I love running, but back in 2015 I started to experience some pains in my legs. I was doing a 5k race, but I was in so much pain after 2k that my dad had to come and pick me up and carry me to the car. I’d also noticed some little lumps in my groin and a lump on my left butt cheek. Being a teenager, I was too embarrassed to say anything about it.

During that summer I started to have difficulty going to the toilet. I’m quite stubborn and try to deal with things myself until they get really bad, so it wasn’t until the end of summer when I couldn’t urinate at all and was in a lot of pain that I told my parents. 
 
We went back and forth to the doctors and I was given antibiotics, but they didn’t do anything. They thought it was an abscess and I had emergency surgery. They realised it wasn’t that at all and after a week in hospital I was told I had rhabdomyosarcoma. It was a rare form of cancer that normally only effected kids and it was at stage 4 and really aggressive. 

Young people like Ellie need your support.

I was in total shock. I had seen adverts saying ‘if you have a lump get it checked out’ but I didn’t in a million years think that I would get cancer. It was all such a whirlwind.  

I was transferred to the Teenage Cancer Trust unit at Queen’s Medical Centre in Nottingham and when I saw the Teenage Cancer Trust sign it really hit me and I thought ‘this I real now’

I had to have 9 rounds of aggressive chemo and 28 sessions of radiotherapy. It really took it out of me and I lost a lot of weight. I was so weak, I couldn’t walk upstairs by myself and needed help from my family. I was nauseous too, I got mouth sores, lost my hair and the radiotherapy killed my ovaries and scarred my uterus so I now have to face the fact that I’m infertile. The Teenage Cancer Trust nurses were really helpful though, talking me through it and giving me oestrogen tablets. 
 
Being on the Teenage Cancer Trust unit was great as I got to meet other young people with cancer who I could relate to. 

I found I could talk to them about things that I couldn’t talk to my other friends about, who sometimes didn’t know what to say and were worried about saying the wrong thing. 

I didn’t have to filter myself around them and there was a real sense of unity. There was a girl called Heather on my bay who made me feel really comfortable and talked to me about school and stuff. We were both doing GSCEs so we could share stencils and stationary. My mum could go into the parents’ room and talk to other parents, so she had support too.
 
The Teenage Cancer Trust Youth Support Coordinator was great as well. She organised lots of activities on the ward to help us learn how to feel better about ourselves and cope with the side effects of the treatment. We had pizza nights, did group cooking which I really loved, and nights out which I really looked forward to.
 
I really liked the Teenage Cancer Trust nurse, Gabby, as she offered me lots of support which was so useful as my diagnosis hit my family hard and we were all at a low ebb. My twin’s mental health suffered as she was so upset. Even though we’re twins, we were very different people before my diagnosis. She’s been there for me through everything, we’re so much closer now.


 
I’ve been in remission for a year now but it doesn’t all end once the treatment stops. I’m still dealing with the side effects of the radiotherapy and still get very tired. I can’t wait to go to Find Your Sense of Tumour later this year though. I loved school so much so I was really upset to miss out. I’ve had to resit the year but now I want to do Biology, Chemistry and Maths at A-level and go on to be a doctor.”

Young people with cancer like Ellie need specialised nursing and emotional support. We're the only UK charity meeting this critical need but we don't have enough nurses. Right now we can only reach half of the young people that need us with our world-leading nursing.

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