Olivia Deane hit the headlines when she was diagnosed with retinoblastoma aged 12 – this type of eye cancer usually affects young children under six. Now 20, Olivia has written a book about her cancer journey which she has kindly agreed to share on our blog. Over the coming months we’ll be publishing chapters so that we can follow her journey…

It was like any other optician appointment but mine went a little different this time round.

I was sitting in the waiting room listening out for my name to be called. “Olivia Deane” said the optician.

She was lovely and spent quite a while with me, I thought it was just the usual process you go through when you need glasses; however the outcome was that my vision was almost perfect but I needed to take a visit to my hospital in Horsham. The optician had come across a black mass in the back of my right eye, but couldn’t be sure what it was.

I didn’t know any different before my appointment but this explains the black floaters I sometimes saw when looking in certain directions; I just never said anything because I thought it was normal.

Two weeks later I visited Horsham Hospital with my mum. I had further tests on my right eye. Still the outcome was near to nothing, nobody seemed to know what this black mass was apart from it being maybe what elderly people get (wear and tear). At this point they had to send me to Brighton Hospital because they just couldn’t be sure what was wrong as they didn’t have all the right equipment that could give the doctors definite answers.

Surprisingly I was ok, I never really questioned things and just went with the flow, I mean I didn’t know what was coming my way. I never imagined anything could suddenly turn around my life at 12 years old.

I had no worries at all!

Again I patiently waited in Brighton Hospital for my name to be called out.
“Olivia Deane” the doctor called.

I was for sure going to find out what was up today, they have so many different machines and the doctors seemed pretty confident in everything they were doing.

Unfortunately they still couldn’t name what was wrong with my eye, but they knew to not leave it any longer and referred me to Barts Hospital in London.

The next day I had an appointment with an eye specialist. I did start to wonder if it might be a bad outcome and something could seriously be wrong. But one thing in particular never sprung to mind…

I arrived and was seen quite quickly but waiting for my results felt like forever. “Olivia Deane,” the nurse said over a busy room of people.

I’d be lying if I said I wasn’t nervous. I gripped on to my mum’s hand so tight and was ready to face whatever.

Getting the results

Me, my mum, my nan, a few surgeons and the eye specialist were in this one small dark room. I knew it was serious, I felt the tension even though everything around me felt so relaxed.

The doctor began to go through pictures of the back of my eye, I didn’t really understand the pictures but then he started to explain. After a few minutes I found out I had retinoblastoma; a type of eye cancer usually affecting children from 0-6 years of age. But an extremely rare one for me.

To this day I still can’t describe the rush of feelings that flowed through my body, it completely took over me and my thoughts and the only thing I couldn’t get out of my mind was that I was going to die.

I was 12, my only worries were doing my homework on time, making sure I came inside before dark, baking cakes with my mum and trying to get them perfectly risen and not collapse, and even if they did we would start over and make them perfect.

My whole entire life collapsed on me and I couldn’t just start over and make it perfect. I had to face this and beat it with every fight I had. NOTHING else mattered now.

Little did I know, the department I was seen in was for cancer. My mum and nan were told prior to the visit but understandably didn’t tell me as they didn’t want to worry me when it may have not been anything serious. I saw the nerves in them beforehand, I guess I was just so oblivious because I definitely didn’t see this one coming.

Any questions?

The doctor could see the worry in my face. I mean the only time I ever heard about cancer was when people had died. He asked: “Are there any questions you want to ask me? Anything at all?”

You’d think I’d reply with the question I wanted to ask straight away but quite honestly I felt absolutely ridiculous to ask him what was really on my mind, and looking back now I feel sorry that I felt ridiculous because anyone would ask the same thing.

“Am I going to die?” I said.

He replied: “No you will not die, we have a treatment called chemotherapy that will help shrink the tumour in your eye”

A sense of relief flooded through my body, and I knew there was hope at the end of it all. My mum and nan needed to get their eyes tested to see if I inherited it from them, which fortunately I didn’t. I was just unlucky.

A phrase that always stuck with me throughout it all was: “You’re never given things you can’t handle.”

I’ll beat this!

While my mum and nan were having their eyes tested. I waited in a playroom with a couple of nurses who spoke to me about the tumour I had and how it will affect me. It didn’t sound so bad when they explained it to me because they had a possible cure for my cancer and reassured me that it wouldn’t hurt.

If the treatment wouldn’t work, the worst case scenario would be having my eye removed. We were all determined we would save my eye!

My journey begins.