Diagnosed with retinoblastoma (Rb) at 14 months old, Alex tells us about the “roller coaster ride” that is his life, but ultimately how losing your sight is not the end of life’s wonderful experiences.
Having been diagnosed with Rb as a baby, it’s impossible to say if I remember ever having “normal” sight, but there are certainly a few times in my life where I’ve woken up and felt like someone had stolen my eyes and replaced them with some even dodgier than mine.
Alex at 14 months displaying a common sign of Rb – a white ‘glow’ in the eye.
My parents were told that I had bilateral retinoblastoma and that I’d need to undergo a cycle of radiotherapy* to treat my right eye and hopefully save the left. Eventually, my right eye was removed leaving me with pretty good sight in the left eye. My remaining sight allowed me to do pretty much everything my friends did at that age, and the only real impact I remember was having larger print books at school and terrible handwriting.
Later on, I had to have two doses of chemotherapy and laser treatment. I can’t say that I really remember noticing a change in my vision after the treatment, and in all honesty, I remember just putting the experience behind me and getting on with life. We’d been warned that all of the treatment I’d had “may” cause some issues further down the line such as a detached retina, a cataract, and possibly some bleeding or slight loss of vision.
And wasn’t that the truth!
A series of unfortunate events
Not being a fan of doing things by halves, later on in life, I got a small tear in my retina and had it repaired, developed a cataract which then worsened, then I went and chronically detached my retina and also had some internal bleeding in the eye. After the removal of the lens in my eye to get rid of the cataract and insertion of silicon oil to repair the retina, the effects on my sight were substantial.
When I woke up, I was truly scared of what I could see – or more accurately, couldn’t see. Doctors were telling me they were really pleased with the outcome, and I remember thinking “is this some kind of joke”? Looking back, I now know how incredibly lucky I was as the alternative was a complete loss of vision, something I’d not allowed myself to even contemplate.
I spent my young adulthood pretty much blagging my way through life. I’ve been very fortunate that I’ve had close friends throughout that have supported me to live my teenage and early 20’s the same way they have. I really don’t know how I did some of the stuff I did, like clubbing holidays, quad biking in the desert in Egypt and the usual teenage stuff (that I won’t mention!), but I feel so fortunate and grateful to have done so.
What happened to me next is incredibly rare for someone who had Rb as a child. In my mid-twenties, my life turned upside down literally in the blink of an eye. I woke up and noticed straight away I had a black shadow in the top corner of my vision, I tried blinking and wiping the sleep out of my eyes hoping it’d just disappear, but unfortunately it was here to stay. Then followed countless trips to hospitals, injections behind the eye, injections into the eye – but in a nutshell, I ended up losing all of my remaining sight, watching it deteriorate day by day.
New opportunities and experiences
Alex and his guide dog River.
2016 was the biggest rollercoaster ride of my life so far, but not just because of the negatives. By the time 2017 rolled around, I’d learned to get around independently using a mobility cane and got a new job. Janey and I bought our first home together – and to top it off – my beautiful girlfriend is now my fiancé and we’re to be married in May of this year!
Three years down the line, I’ve experienced so much that I don’t think I would have if my sight remained. I enjoy my work now and have progressed in my career, whereas before I just spent my days struggling through shifts. I’ve met some amazing people and formed great friendships and have been blessed with my handsome guide dog River – who will be starring in a TV advert with me in March. I’ve cycled 46 miles on a tandem bike and put myself through a 15km obstacle course for charity – and so much more!
It would be a lie to say that I don’t care that I’ve lost my sight, but I truly believe that my experience has shaped me as a person and taught me a lot about what’s important in life. I realised how unbelievably fortunate I am to have such a supportive network of family and friends. How lucky I am to have found a life partner that truly has my back no matter what and loves me for who I am.
To anyone who may be going through what I experienced I’d say, value the help and support you have available to you, or you will be the one disabling yourself. Take advantage of all the opportunities life throws at you no matter how daunting they may be, and learn to appreciate the stuff that doesn’t involve sight – you may not recognise it yet, but it’s there!
The next adventure
Alex and Janey are looking forward to their wedding day and starting a family together.
And now on to the next chapter… Janey and I would like to have children together, and because I unfortunately have the Rb1 gene, we will be going through pre-implementation genetic diagnosis (PGD) treatment.
Of course, this is not the only option for us if we want to have children, but after a lot of detailed explanation and thoughts about our options, we have decided PGD is right for us. Dr Elisabeth Rosser (Great Ormond Street Hospital) has been extremely helpful and supportive through the experience so far, and we can’t wait until the day when we can go back to her office holding our baby to express our deep thanks to her.
Perhaps next time I write a post it’ll be talking about life as a dad, and how jealous River is of the little one stealing the attention!
*This type of radiotherapy that Alex had is no longer used to treat Rb.