75 years on, Alan shares his journey of retinoblastoma treatment in a pre-NHS system, growing up with a prosthetic eye and living life to the full.
I was born in Glasgow during Christmas 1942 and was diagnosed with retinoblastoma (Rb) at the age of two, resulting in the removal of my left eye. At an early age, all my parents told me was “there was a growth in your eye which would have killed you had it not been removed”.
It may be hard to believe, but throughout their long lives (my mother lived to over 100 years old) the subject was never discussed further. I have no idea how my parents felt at the time of the diagnosis and, being pre-NHS, how the operation was paid for. Also, back then there weren’t organisations such as CHECT to provide support and advice to families.
Although my parents must have been concerned that I might damage my right eye, the approach they took was not to wrap me in cotton wool – instead, they encouraged me to enjoy life to the full. Luckily I had excellent vision in my right eye.
When I turned five, my family moved to Leeds. On our housing estate, there were plenty of young children. We would spend our spare time playing cricket and football in the street or going to the nearby woods to climb trees and use willowherb stalks as swords. Only occasionally an inquisitive young child would ask if there was something not right with my left eye, or it was made of glass – conversations quickly moved on and I did not experience any teasing. At secondary school, I enjoyed participating in all sports and represented the school in football, tennis and athletics.
I joined the Cubs at the age of eight – this was to be the start of my 20-year involvement with the Scout movement in which I eventually became a Scout Leader. It established my love of the outdoors including camping, fell walking and racing. It was through the Scouts I formed lifelong friendships, it also proved to be a real confidence building experience.
After graduating from university, I started work in Scotland at a large chemical factory owned by an international oil company. I spent my whole career with the same company and was fortunate to have the opportunity of holding senior positions in London, Geneva, Paris and finally back in Yorkshire.
My greatest good fortune was to marry my wife Jenny – later this year we will celebrate our Golden Wedding Anniversary. My Rb would appear to be non-inheritable, there’s no history of the illness in the family and our two children and five grandchildren have been Rb free.
I cannot remember how many artificial eyes I have had during my lifetime. During my working career, I had two which each lasted about 12 years. Others lasted only about six years when the black of the pupil “silvered”. My main concern always was to get a good match with my green/grey right eye and for the artificial eye to be secure in its socket. Very rarely did the eye “pop out” unexpectedly. About five years ago I underwent an operation to deepen my socket sill and that, plus having a lighter weight prosthetic eye, has enabled me to still meet the challenge of football with my grandsons and to keep charging about on tennis courts.
I appreciate that those who have had Rb will have had various experiences and that in virtually every aspect of my life I have been very lucky. Looking back I increasingly appreciate the approach taken by my parents. Neither they nor I would wish that having one eye should define who I am.