‘It’s very important to accept help when you need it’

Teenager Katy was diagnosed with bilateral retinoblastoma as a baby.

Fifteen-year-old Katy Hughes was diagnosed with bilateral retinoblastoma as a baby. She talks about growing up with an artificial eye and how having cancer has inspired her to aim high…

My name is Katy Hughes and I am 15 years old. When I was six months old I was diagnosed with bilateral retinoblastoma, and just after I was two I had my left eye removed.

My mum and dad first noticed something was wrong when they saw the white glare in photos. They took me to the doctors and were told to go straight to hospital to get checked, and unfortunately they got the diagnosis.

Although I can’t remember much about treatment, I can still recall small memories, such as my hospital nurse and painting eggcups with my sister. I was treated at St Bartholomew’s Hospital in London but had my chemotherapy in Sheffield, close to where I live.

I also get fitted for new eyes at the Royal Hallamshire Hospital and one of the first things I remember is being given my special Dorothy dinosaur teddy, who had an eye just like mine. I used to love showing people how my eye worked through my ‘special’ teddy.

Although I lost one eye, I feel very fortunate that my parents managed to spot it early enough to save my right eye. In many ways I feel that going through this has made me the person I am today.

The odd remark

Throughout my life, I haven’t really received much teasing, however when I was very little I remember a girl picking on me, calling me “plastic-eye girl”. I found this very humiliating and would often hide away somewhere. Since then I’ve never had any bother about it, except the odd remark or question.

As I grew older, I became very self-conscious about how my eyes were visibly different. When I was 11, I had surgery to lift my left lid and try to make my artificial eye look less droopy. This partially worked but I still had a few issues surrounding my appearance. In October 2013 I had a fat graft under my socket to help boost my eye up and out, making it appear more open.

I am currently feeling quite secure in how my eye looks. It’s nice to know that, if I did feel self-conscious, there are always ways to help. The doctors have been amazing in making sure I feel as confident as possible.

One of my most interesting memories is when I travelled up to Blackpool to get my eye live painted. They had tried many times to get the colour right but it was never spot on so I got to sit and watch them paint my new eye!

Being there in the flesh meant I could not only get an accurately coloured eye, but also see exactly how my eyes were painted and made. I found this fascinating, as I had no idea how it was done before!

Retinoblastoma and teenage years

I am currently in year 10 at school and studying for my GCSEs. Overall I enjoy school and I’m always grateful for the amazing friends I have, who continue to help and support me if I ever need it.

I have always felt incredibly supported by both friends and family, especially through tough times. One thing I have struggled with is a fear of blood and medical issues. I also had heart surgery when I was seven and this, combined with my eye cancer, has left me very sensitive to medical trauma.

My family really supported me and I attended psychology sessions for a short while, which really helped me understand how to deal with the anxiety. I now feel I am very much in control if I find myself in difficult situations and I think it’s very important to accept help if and when you need it.

Building confidence

Although I sometimes feel shy about my eye, I’m quite an outgoing person. I love performing arts and attend Stagecoach every Saturday. This has really helped my confidence and also has led to some amazing experiences such as performing on a West End stage and being in professional shows. I also met many of my closest friend there, and hope to continue performing for a long time.

As a whole, I never feel as though my cancer has held me back in life. If anything, it inspires me to value what I have and to aim high in everything that I do.

Read more real-life stories of people affected by retinoblastoma. If you’d like to share your Rb story on our blog, we’d love to hear from you – please email natasha.boydell@chect.org.uk.

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