Louise shares how her retinoblastoma has not held her back, but also how important it is to be aware of the risks of adult second cancers.
My Rb journey started back in November 1973. I was eight months old when my Mum noticed my eyes were watering a lot and that I had a slight squint.
Mum took me to the GP who dismissed it as a regular squint and that I would grow out of it. Luckily for me, my mum was not happy with this diagnosis and wanted a second opinion – so off to Norfolk and Norwich Hospital we went. It was there we met Mr James who knew immediately that something wasn’t right, so he urgently referred us to Moorfields in London.
Louise with her older brother at Christmas time.
It all was a bit of a whirlwind, so I’m told, from that point. Soon after I was diagnosed with bilateral retinoblastoma and went through brachytherapy (now known as plaque radiotherapy) and cryotherapy. They managed to save my right eye but the left one had to be removed.
Weirdly, I can remember the ward I was on and that I was in a cot with another baby who also had had their eye removed – and obviously I remember the wonderful Mary who had the most amazing playroom for us all!
After my operation, London became my family’s second home. Back and forth for check-ups to Moorfields and then to St Barts – which were not always the most pleasant of visits – but the staff were so lovely and supporting to my family. However, it was always greatly improved by a trip to Hamleys afterwards for me and also my brother who tagged along with visits.
One of my fondest memories of these trips to London was having my picture taken with a monkey and being totally convinced mum and dad had brought it for me – lol!
So then came the artificial eyes, I’m not going to lie, in those days they were not the best matches – but that did not matter very early on in my childhood. I went through primary school with some wonderful name calling to which I would respond by taking my eye out and then watch people run away! As a result, this sometimes meant that I ended up in the headmaster’s office! I had one close friend who had my back and she got me through the tough times.
When I started secondary school, my confidence was really hit as my eyes were still not a great match. On one of our trips to Barts we mentioned the issues I was having and was put in contact with ocularist Paula Gladden.
I have to say she turned my whole life around and boosted my confidence – I got an amazing eye made and have never looked back since. And I’m still seeing her to this day for regular check-ups and replacement eyes.
Secondary school life had its challenges and sports was my biggest one, but it did not stop me, catching anything that was thrown at me had its issues, but with a little bit of practice I overcame this in my own unique style.
Louise and her brother holding a monkey in London.
I was told by doctors at Barts not to do contact sports or sports that involved objects at high speed that could injure my eye. So, I took up horse riding, this was interesting to say the least, but I loved it so I persevered. It helped me improve my balance but timing the jumping of fences was a bit of hit and miss with the depth perception being a slight issue.
When I left school, I worked with horses and trained to be a riding instructor – my confidence just grew and grew. I had various jobs within the horse industry over the years and loved every minute of teaching people to ride, train and compete with their horses. Now I have a “sensible” job working for the NHS as a dispensary manager in a GP practice, but I still train horses in my spare time.
In 2006 I was getting recurrent eye infections in the artificial eye socket so went back to Moorfields to get it checked out. It became apparent that my eye socket was starting to droop same as other parts of your body do as we get older. It was also recognised that I had never had an implant put into my eye socket when they removed my eye all those years ago. So, I underwent surgery to have an implant put in and my bottom eyelid lifted. It was a much bigger operation than I thought, but so worth it. My eye now moves better, and the socket is a lot healthier.
But it wasn’t until I was in my twenties that I was informed about the risks of developing a second cancer in adulthood. Since then, second cancers have always been in the back of my mind, therefore I decided that I was going to live my life to the full including travelling to many countries.
Louise riding one of her horses.
Louise riding bareback in the ocean.
Finding an adult follow-up clinic proved quite hard and getting a GP to refer me was even harder as they really did not have any knowledge about the adulthood risks having had Rb as a child.
Even in 2018, when I had a lump come up on my leg, it took me a whole year to get a referral to dermatology to get checked out as it “did not look suspicious”. Finally, I did get a biopsy and was diagnosed with a rare naevoid malignant melanoma. More operations followed, and I have been left with a scar that I now refer to as my ‘shark bite’, but I have now been cancer free for three years. I am also now monitored regularly every six months with scans to make sure all is well.
So Rb has certainly had an impact on my life. To start with it was a struggle for all my family and myself to get to grips with, but looking back, it has not really stopped me from achieving my goals and living my life to the full.
Yes, I do find some things still challenging and I get frustrated. I still bump into things on my left and still bash into people that approach from that side, but I now have ways of dealing with these issues. My friends are “trained” to walk on the correct side of me in a crowded place or concert and people I know tend to understand that they will get ignored if they stand on my left in my blind spot!
Yes, you are taking a risk by expecting me to catch something thrown towards me, and no, I have never seen the left-hand-side of my nose and my balance is not great – but these are only minor issues.
I have some amazing friends and family who have helped me throughout my life to conquer all those little issues that come along but I am now a lot more open about telling people about my eyes, and you will be amazed by the amount of people who want to find out more about it!
I have recently taken up paddle boarding which has pushed my balance to the limit, but I am loving it, and continuing to live my life to the full and pushing my limits.
Louise has taken up paddleboarding.
If you’ve been affected by retinoblastoma and want more information on second cancers, please visit our adults after Rb page. Our support workers Lesley and Sarah are also here to help. You call us on 020 7377 5578 or email them directly:
- Lesley Geen (The Royal London Hospital): lesley.geen@chect.org.uk
- Sarah Turley (Birmingham Children’s Hospital): sarah.turley@chect.org.uk