Thursday 31st March 2016
North East and Cumbria
I had been feeling ill for as long as I could remember – since the age of about 3...
I went to the doctors all the time with bad pains in my abdomen but was just told it was IBS. Then, in 2012 when I was about 13, it got really bad. I was vomiting all the time and spending time off school. I couldn't do PE because it gave me such overwhelming fatigue and exhaustion.
Finally, I was sent to hospital to have the issue investigated properly. I had a gastroscopy, which involved having a camera down my throat to have a look in my intestine. Before I was sedated for this, the nurse told me that I would probably wake up with a tube down my throat. This was because they thought it was either Crohn's or Inflammatory Bowel Disease, and that is what the treatment would involve.
When I woke up, there was no tube in my throat, so I knew at once that it was something unexpected. They told me that they had found polyps in my large intestine, and there was a risk that it could develop into cancer. I was diagnosed with an extremely rare genetic condition called familial adenomatous polyposis, and had to have a major operation to remove and reconstruct my large intestine.
2 years passed without any further issues, until I went to have another gastroscopy to check up on everything. When I woke up, my consultant told me that there was no need to panic, but that they had found a golf ball-sized lump in the scar tissue from the operation. I was sent to an oncologist, although everyone called her a 'lumps and bumps' doctor – I knew they were trying to sugarcoat the situation for me.
I was diagnosed with desmoid fibromatosis – a very rare kind of cancerous tumour – in my scar tissue. When I was diagnosed it was overwhelming, because it felt like there were so many options before me: chemotherapy, or hormone treatment, or an operation. I just wanted to know exactly which option was right and which one would make me better – it was scary not knowing.
Within a couple of weeks, I was having chemotherapy. I had chemo every week for 6 months, and then every fortnight for the 6 months after that. No one ever knows what chemo is going to be like, and that is really scary, but it kind of becomes part of your life and your routine.
At times, it felt really hard to stick at the chemo, because the thing that is making you better is making you feel so much worse. It made me feel really anxious, and very sick and nauseous. My weight plummeted to 49kg. I had a really dry mouth, and what I can only describe as a spikey feeling in my chest – as if there were spikes down my oesophagus. But I just powered through – I had a really strong, almost primal instinct to get through it, not just for me, but for my family.
I had my treatment on the Teenage Cancer Trust ward at the RVI in Newcastle.
The people who worked there were so kind, and it was like having a ready-made support network. When my friends found it hard to deal with what was happening to me, I could talk to other people my age who understood what I was going through.
The Youth Support Coordinator, Cara, put on lots of events and activities, which meant that you could meet the other people who were either on treatment too, or who had got through it and were in remission.
I made friends and sometimes I even forgot about my treatment. It gave me a focus...
When I was first diagnosed, it was so isolating. I felt really alone and I just sat at home for a few days. But Teenage Cancer Trust has shown me I was never alone and there were so many people supporting me. I met so many new people and it was a huge part of my life. Just because you have cancer, that doesn't mean you are going to stop being a young person. You aren't going to suddenly stop being you. That's why the charity is so important.
I kept going to school throughout my treatment, and even sat my GCSEs. I was a house captain, and we supported Teenage Cancer Trust for a charity day we were putting on. It was the best charity day they had ever had, because everyone got behind me and my personal experiences. We raised around £7,000 in a day!
When I got home, I had a look at a presentation about cancer that I had prepared, but never had time to give. It included statistics about young people with cancer, which made me think about all of the people I knew with cancer. None of them were just statistics. I wasn't a statistic, either. I wanted to fundraise in a way that celebrated the people behind the statistics, so I started a JustGiving page and a campaign called 'Not Just a Statistic'.
When the first person donated on my JustGiving page I cried. I was so moved that someone would donate to my cause. There I was, crying over a tenner! Since then, it's reached over £4,300 which is just amazing. I've also been working with a clothing company to create and sell tshirts.
It's amazing that it has raised so much money, but what really matters to me is spreading the word and raising awareness. I want young people with cancer to know that they don't have to be scared and that there is a support network for them and that they don't have to face it alone.
It is OK not to be OK, but you also don’t have to forget who you are and what you want to do. You are still that person, cancer or no cancer.
I stopped chemo in September 2015, and am still having check-ups every 6 weeks. It was difficult ending my treatment, because it was part of my life. But I'm still in touch with everyone from Teenage Cancer Trust and the support network is still there for me.
In July, I'm going to be collecting for Teenage Cancer Trust for 5 nights at the Theatre Royal in Newcastle, so I hope I raise lots for my campaign and spread the positive message of my Not Just a Statistic campaign!