Meet Becky, diagnosed with Rhabdomyosarcoma, aged 7

Meet Becky, diagnosed with Rhabdomyosarcoma, aged 7

My name is Becky, and I am 21 years old. I am currently in my final year of university studying Psychology.

Before I was diagnosed, I was your average young child, who had just started Year 3 at primary school. I was quite a sporty child, and enjoyed swimming and tennis, and had a large group of friends. 

I was diagnosed with a Rhabdomyosarcoma (essentially, a cancer in the muscle of my right eyelid) in January 2009, when I was 7 years old.

In early December, we had noticed a small lump forming on my eyelid, initially looking a bit like a stye. It quickly grew until it looked like a tiny bunch of grapes. It made my eyelid swollen and appear quite bruised. We visited our GP when it didn’t get any better, who referred us to the local hospital’s eye unit, who then referred us to Moorfields Eye Hospital in London. After many visits over Christmas and New Year, I had an operation to remove the lump on the first working day after New Year. Within two days we got a call to confirm that it was a cancerous tumour, and by the end of the week I was at the Royal Marsden Hospital having my first round of chemotherapy.

As a young child, I wasn’t particularly aware of what was going on, I just remember visiting various hospitals in a very short period. The first operation was a severe one, which left me in quite a lot of discomfort, with little time to recover before I was in hospital having a port fitted and my first round of chemotherapy. 

My treatment involved both chemotherapy and radiotherapy. The chemotherapy treatment ran in three-week cycles over a six month period. After the first three rounds, the tumour hadn’t responded well enough to treatment, and I needed radiotherapy, which was administered every day for 28 days. In between treatments I was regularly admitted to my local hospital with infections due to my lack of an immune system. I had to be kept in isolation during these admissions, so could only see my parents or medical staff. Occasionally, I was able to attend school, when I was well enough, but I was often very tired and could only manage half days. Overall, I missed almost the entirety of Year 3 and a lot of Year 4, and I missed out on being with my friends and simply being a child. I remember celebrating my 8th birthday in hospital while I was being treated for another chest infection. The room was decorated with balloons, and the nurses brought me gifts and a cake – which 8-year-old me was very excited about!

I finished treatment about a year after I was diagnosed, however the long-term effects of the treatment have been very long lasting. I have suffered from repeated complications to my eye, an effect of the scar tissue from the initial operation and damage from the radiotherapy. I have had multiple operations to stabilise it and only recently has this been achieved. I still need regular hospital appointments and there is a possibility of further surgery in the future.

The radiotherapy, due to the location of the tumour, has caused some damage to my brain and in particular my pituitary gland. I often struggle with fatigue; aching muscles and my brain needs to work harder to concentrate and retain information. I often feel quite anxious and have found it difficult to come to terms with having an eye that looks different. With my cancer occurring when I was so young, I’m only really beginning to understand everything I have been through and the effect that it has had and will have on my life. 

I heard about Teens Unite when I moved to University College Hospital from the Royal Marsden in 2018.  My consultant spoke very positively about them and how important it was to others, so I joined. I had never really been able to meet other children who had been through what I had, and was struggling with anxiety, and feeling quite lonely. I managed to go to a few events but was very nervous! My first event was a family day at Paradise Wildlife Park with my mum and brother, and then I went alone to an escape room activity. However, it was during the Covid lockdown in 2020, that Teens Unite were the most amazing help. I was shielded for the entire lockdown but Teens Unite offered so many online events which I could attend, including yoga, craft sessions, and quizzes. Without Teens Unite I would have been incredibly isolated, so I was very grateful that I had those events and people to talk to.

As we came out of lockdown, I attended a few events and spoke to some other teens about attending the Activity Stay. I thought that I would struggle to get to know people and it would be too overwhelming for me. However, with some encouragement, I signed up to attend the stay during the summer of 2022 and I am so glad I did. We only went for four days, but during those four days I built stronger friendships than I ever had before.

It was amazing to be able to meet people who didn’t see cancer as a problem, or something that needed sympathy, but just as a part of you, and a part of you that they could also relate to. I have never opened up to people about my treatment before, but it was very refreshing to be able to talk to others who understood everything. We had the opportunity to do some amazing activities during the week, and I would recommend attending the stay to anyone!

Cancer is so isolating and takes a lot from you, and Teens Unite were there to help put you back together. The variety of events (in person and online) mean they can reach as many young people as possible and give you the opportunity to meet others that understand. Cancer is a club no one wants to be part of but joining Teens Unite has given me the chance to meet people who understand me, and I can relate to. I am very lucky to say I have met some friends for life through Teens Unite, and have attended some incredible events, which I never thought I would ever have the confidence to do!

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