Natalie, who had retinoblastoma when she was three-years-old, speaks to us about life then and now.
I was three years old when my mum noticed a white shield go over my eye while I was in the bath. My mum took me to the local doctors to be told she was a fussy mother and there was nothing wrong. Luckily during this time, I was receiving treatment at Scarborough for another illness, so on one of those visits my mum mentioned my eye to that doctor and I was referred to the eye specialists in Scarborough Hospital before being sent to London for further investigation. After the investigation I was taken into St Barts hospital and had my left eye removed. While staying there, me, my mum and my nana stayed in a ‘home from home’ shared house.
Growing up was hard as teachers, doctors and people around me didn’t understand about my eye, and with this, play when I was younger was restricted because teachers feared me getting something in my eye or anything else happening. I wasn’t allowed to play there and do certain activities. If anything did happen my mum would be called from work to come and get me, and she would have to sort my eye out while also ‘learning on the job’ to sort the problems. Peers treated me differently due to my eye not looking ‘normal’.
Now I’m an adult, it still took me years to come to terms with my eye and I hated it for so long. This was until I started working with children and adults who weren’t disgusted by it. So, they didn’t like it, but that’s fine, that’s understandable. But being able to teach the children about my eye and how and why it was different seemed to help me a little bit at a time, and it was also great to hear the questions they have and to see it from their perspective.
I currently work as a Teaching Assistant in a local school and work closely with SEN children. It can be hard work but can see the rewards with it as well. I love reading and going to the gym. I have three cats that keep me entertained at home.
My advice would be as corny as it sounds: don’t give up. If things seem hard with or around the eye affected, don’t worry, it will work out. Things will get better with more understanding for the person affected along with the family. Everyone is different, don’t let others make you feel less worthy.
CHECT offers lifelong support to anyone affected by retinoblastoma. If you would like to talk to one of our support workers, please contact support@chect.org.uk