Nicole shares her retinoblastoma story, from her lengthy treatment and struggles with being self-conscious at school, to finally embracing her artificial eye and becoming the confident woman she is today.
In February 1992, two months after I was born, my mum took me to the GP because my eye would not stop swelling. The next day I was seen at the local eye infirmary where they found a tumour. I was then urgently referred to St Bartholomew’s Hospital in London where they confirmed the devastating news that I had bilateral retinoblastoma (eye cancer) in both eyes.
My left eye no longer had a lens – it got pushed out from the swelling – and the swelling was confirmed to be the cancer itself. They couldn’t save my left eye, but, thankfully, they could still save my right. I was just ten weeks old the day I lost my eye, but it was also the day my life was saved.
From then on, London became our second home as I underwent multiple treatments to continue to try to save my right eye. After five years of cryotherapy, lens sparing radiotherapy and a radioactive plaque, the cancer finally went into remission (and didn’t come back). I still remember times of when I was in the hospital going down for my surgeries. I remember absolutely hating the drops and the anaesthetic. My parents are so grateful to all the kind people that were around us at this time. They were even given accommodation to stay for the months that we were all there, shared between other parents all going through something similar.
I now have five scars on my retina and was diagnosed with a cataract at the age of eight as a result of the radiotherapy. It’s been with me all my life – but until it affects my sight, I won’t tamper with it!
I remember suddenly realising what my vision truly was like for the first time when looking down a microscope at the DNA of an onion cell during my A-Level Biology lesson. Big black smudges appeared across its lens. At first, I thought it was a faulty microscope, but then it dawned on me – this is what I actually see, except my brain fills in the gaps! It’s remarkable what our brains can do really.
I struggled with my confidence for most of my life. I covered my face with a fringe for ten years throughout secondary school, college, and university. It was only later in life that I felt that I could finally show the world who I was. I definitely didn’t let retinoblastoma stop me from doing what I love.
Yes, I do find certain things challenging and get frustrated at myself because I bump into things or trip over things. However, I learnt to adapt and have coping strategies for them. It’s the little things that surprise me and make me happy, for example when someone throws me something, and I actually catch it! Or when I am able to read the small print on a tiny label for my mum because she is unable to see it.
Knowledge is the best thing about retinoblastoma, as it is so rare. I can now openly talk to people who ask about it, although it is a compliment when people don’t even realise that I’m wearing an artificial eye. I have even made my first artificial eye into a ring which I love wearing – it’s a great conversation starter!
If you’ve been affected by retinoblastoma, or you’re worried about it, our support workers Lesley and Sarah here to help. You call us on 020 7377 5578 or email your support worker directly: