Karen Stuart was diagnosed with retinoblastoma when she was three years old. Now, 30 years later, she and her ex-army dad Ray share their own memories from that time and reveal why their personal health challenges have inspired them to take on the mission of a lifetime…
We were living in Germany when my mum first spotted that something was wrong. I starting holding my head, as if I had a headache, and a family friend also noticed a glint in my left eye.
We went to the doctor who said there was nothing wrong. A few months later we were in the UK and went to an optician for an eye test. He put me on the chair and promptly fell off his!
We were sent to Wolverhampton Eye Hospital the same day, where further tests showed I had retinoblastoma, and within three days of being diagnosed I’d had my left eye removed. I was three years old.
I was so young that I really don’t remember a lot but what I do remember is good. I had my first taste of Cadbury’s Animal Crackers while in hospital. I remember the optician had a lovely moustache. I remember going into theatre, having the cannula put in and getting to choose which colour I wanted. I remember going back for check ups and being fussed by the nursing staff.
The doctors told my mum that if the cancer had been left untreated much longer, then who knows what would have happened. They speculated that it was at least a year, maybe more, in the making.
Fortunately I didn’t need any further treatment after the enucleation. Going through retinoblastoma and the aftermath was not an ordeal for me. I was so young and I wasn’t aware of what was going on, but I feel for everyone else.
My mum said on the day of my operation that she was devastated but when she came to find me I was as happy as could be because, between us, my dad and I had decided I was off to a party with my paper hat.
I went down in the lift to theatre and the two of them went and sobbed their hearts out in a little garden in the hospital grounds. My brother Mark, who is an absolute inspiration to me, was in boarding school at the time and he missed out on a lot too – if I could change anything it would be that.
No matter what, my parents have always dealt with everything superbly and with humour. The fact that Mark and I came through so magnificently is testament to our parents and their selfless and unending support.
As a young child, life was normal. I lived in army barracks where everyone knew me, so it wasn’t an issue – I was just Karen.
There were a few occasions when my eye fell out and I asked an unsuspecting adult to help put it back in, which amused and terrified people in equal measures!
One time I interrupted a headteacher’s meeting with my eye in my outstretched hand and she, without breaking her stride, popped it back in place and carried on with her meeting.
I used to pop it out and put it in my brother’s cereal if he’d been horrible to me as well.
It was only when we left the army when I was 12 that I became aware I was different. It came just at the wrong time as I was heading into my teens and dealing with a whole lot of change. I became more self critical and hypersensitive to curious looks or questions.
When I did go out I hid behind an enormous fringe and a ton of eye make up. This wasn’t all down having Rb, it was just another reason to be self conscious as a teenager, like wearing glasses or having a brace.
Looking up to a hero
When it comes to my eye, I never let it stop me. I’ve always taken comfort in the fact that my hero, Peter Falk, was an Rb kid too and if he could achieve then so could I.
For the past seven years I’ve driven a 125cc bike, have recently passed my driving test and it has never affected me taking part in any activity, from swimming to playing hockey in school.
Now at the age of 32, I still have days where I feel self conscious but I grew out my fringe and most days go to work with all my hair clipped back and no make up on, which is huge for anyone who knows me!
A new challenge
I recently joined a weight loss group and saw an advert in their magazine for Britain V Cancer – Trek Nepal, a six day charity trek in the Himalayas. I said to myself: “Wow, what an adventure! Who WOULDN’T want to do that?”
When I told my parents that I intended to sign up, my mum looked at me like I’d gone mad and my dad, to my absolute surprise, said he’d love to do it too.
I have to get a lot fitter to achieve this goal and I’m learning to challenge myself. I just love it all, the whole process. I’m nervous as I’ve never physically challenged myself and am terrified of being defeated, but I will give it my all.
Dad was adamant that we had to fundraise for a charity that helped people affected by retinoblastoma and we couldn’t be happier to have chosen the Childhood Eye Cancer Trust.
Not only do we get a wonderful adventure but I get to share it with my dad. We’ll motivate each other to reach our goal and that feeling when we’re on the way home, utterly exhausted, will be worth it.
We first noticed something wasn’t right when Karen was two years old so we took her, repeatedly, to our local doctor and he said there was nothing wrong.
Not long after that I was posted to Wolverhampton and when we got back to the UK we all went for our eye tests. As soon as the optician saw Karen he sent us to the nearby eye hospital.
That’s where we found out all about retinoblastoma and how lucky we had been in getting Karen to the hospital in time to save her life.
We have always treated Karen as normal and the routine of new eyes and check ups were just part of day to day things. I think we got things right in the way we handled the whole thing and Karen is just a normal girl with her own ideas and her own life.
I’m 60 years old now and I spent 22 years in the army. I did a lot of different things for charity and I used to be a long distance runner so was always fit and active.
About a month before my 58th birthday I had a heart attack and had to have a quadruple bypass. It was a shock because I have never been ill or unwell.
I was off work for six months but have been back working just as hard as ever since. I know I should slow down and I will one day.
I have always enjoyed trying different things, so when Karen asked me if I wanted to go on a trek in Nepal I said yes and it’s all starting to come together.
I am really looking forward to our adventure. We’ve been trying to get to the gym about three times a week. I want to get my endurance up ready for the long walks ahead and hopefully lose a few pounds along the way! I hope we can raise lots of money for CHECT too.
We have set up a blog and decided to call it ‘the three year itch’ because Karen had her operation when she was three years old and when we go it will be three years since I had my bypass, so we’ve come full circle.
Karen and Ray will be heading to Nepal for the six-day trekking challenge in April 2017. You can sponsor them on their JustGiving page. Want to join them? We need people on Team CHECT! Find out more on our challenge events page.