As part of Childhood Cancer Awareness Month, we spoke to Laura, who had retinoblastoma as a child. Here are her experiences:
Growing up
I am a great believer that everything happens for a reason and here’s why. I grew up in a little village in co. Down. I have 5 brothers (2 older and 3 younger). So you could say I had plenty of protection growing up. At the age of 5 my mum noticed something white in my left eye. It would come and go every now and again. Then the headaches began. They became quite a regular thing, so on the 27th of April 1988, I was taken to my local GP who broke the news to my mum and dad that I had no vision in my left eye. He told my parents to take me straight to the royal Victoria hospital in Belfast. There I met my consultant Mr Page. There were several specialists waiting to examine me. Later that day they told my parents it may be Coates disease (which is a rare disorder involving abnormal development of blood vessels in the retina). I was sent home and we were to return to the Royal on Monday for further tests. On Monday I was admitted to the children’s ward where I stayed for a week. It was after numerous tests that I was diagnosed with retinoblastoma.
My diagnosis
My parents took me home with the instructions that if my headaches got worse or if my eye went red, they were to take me straight back in. Weeks passed by and I made my first Holy Communion and celebrated my 6th birthday. As the time went on my headaches returned but much more severe. On the 1st of August, my headaches got so bad that I was admitted back into the children’s ward, and this is when my parents were told the devastating news that I was going to lose my eye. Mr Page was so supportive with my parents explaining everything, and the very next day I had my operation. Two days passed, and I could go home with the understanding that I was going to go to St Bartholomew’s in London for further treatment. We went home and settled back into family life. A few days later my parents received the news that my cancer was all retained inside my eye, and I didn’t require any further treatment. I returned to school and got on with my life.
School days
School was hard, some kids were mean, but I tried to not let it get to me. I had my friends and they helped me through. They never treated me any different. I finished primary school and started secondary school. Now this was going to be a totally different ball game. I didn’t know these kids and were they going to treat me any different. It was very hard at times, but I never let it define me. They asked questions, and some made fun, but I had a large group of friends who stood by me.
Adulthood
I completed my GCSE’s and then commenced a course in childcare at my local college. I completed my certificate and diploma and then decided I wanted to go into nursing. While at college I met my future husband. We clicked straight away, and we were inseparable. He supported me in everything I did. He helped me through my bad days and was my shoulder to cry on. I commenced my nursing course in September 2003 and had some of the best years of my life. I graduated in 2006 with a BSc degree. Now I had the task of finding a job. So off I went and had interviews for the Southern Trust and the Belfast Trust. At the end of September, I was offered a post in the Belfast trust which I accepted. I had no idea where I was going to be based as I had applied for all wards and departments. Then the letter arrived… “Theatres”. Oh God, I’d never worked in theatres as a student but hey ho, I accepted, and that was it. My first day was so surreal now thinking back. I arrived onto Level 3 and entered A-Block Theatres. I met the theatre manager who said “Laura were placing you in Eyes and ENT theatres”. My first thought was “Oh no I’m not going to like this, what if I faint, what if see something I don’t want to see. How was I going to feel watching people having their eyes worked on or even removed”? But I took a deep breath and headed off to level 6. I met the Sr of the department who took me down to Theatre 3. My heart was beating so fast. I met a few members of the nursing team, and I was introduced to the consultant working that day. To my total shock it was Mr Page. He smiled that same smile that he’d done years ago that comforted me and said, “I’ve met you before, how do I know your face”?. I was speechless, I mean what were the chances. It had been 20 years since I had my operation and he remembered me. He said, “Your Laura, my God I feel so old now”! He just smiled again and said, “you’re gonna be fine”.
In the 9 years I worked there I encountered so many families who were going through what I had been through. I felt that I was like a lifeline to these families. I got asked many questions about how I coped and how I got through, with the main question being ‘Has it ever held you back?’. No! It has never held me back from doing what I wanted.
In my final year of university, I got engaged. So now I was working in a job I adored and planning for my wedding. Now this was scary, I mean, all eyes were going to be on me, plus I was going to have my photos taken. I never liked being in photos much, so this was going to be a challenge. But on the 7th of November I got married in front of my family and friends. Seamus is my rock; he is always there when I have a bad day and picks me up. In August 2009, we welcomed our first child Orlaith into the world. She was perfect, but that worry was there. ‘What if I give her the gene and she gets cancer?’. ‘Would I be able to cope like my parents did’?. All these questions were going through my mind. She was placed under the care of Mr Page who carried out her routine checks. 21 months later, we welcomed our baby boy Tiernan into the world. Again, he was placed under Mr Page and had his routine check-ups. ‘Would he be ok’ or ‘Did he have the gene?’. I never stopped worrying about them constantly checking photos and watching their eyes. But they were ok. After many years of service Mr Page retired and the kids were placed under a new consultant Ms McLoone. In 2014 we welcomed another baby girl, Eimear, into the world and things were a little easier. She was automatically referred and was having her eyes checked every 6 months and every appointment was a terrifying as the last. Orlaith is now 14, Tiernan is now 13 and Eimear is 10 and all of them are in the clear. They attend the opticians yearly to keep an eye but so far so good. I will always be so grateful for the nursing and medical staff who looked after me and my parents and now the staff who look after my children. If it wasn’t for the support from my parents, my brothers, my husband, my children and my whole family, I don’t think I’d be where I am today. They have all supported me in every decision I have made, and they continue to support me in all my challenges. The most recent being the 2021 squat challenge for CHECT. I am so grateful to them for all the help and support that they continue to offer families going through this process as this wasn’t available or spoke of to my parents at the time, but it is such a valuable lifeline.
Our support team provide lifelong support to everyone affected by retinoblastoma. If you would like to talk to a support worker, please contact support@chect.org.uk or 020 7377 5578.
Would you like to share your story with us? Contact isabella.greenwood@chect.org.uk