Heather Burt

‘You have a freckle in your eye’

Who would think that a routine trip to the opticians would change your life forever!

I am 63 , married with 2 children and 5 grandchildren. I have always enjoyed crafts, sewing knitting, beadwork, card making. The crafts were a great stress reliever after 40 years of nursing. I was fit and healthy no medical conditions to speak of. I had worn glasses for a while but thought I would have a new pair as I was doing more intricate items that needed a greater degree of magnification.

I duly went off to Specsavers in Basingstoke and had my eye test. The optometrist asked me if I wanted my eyes dilated so he could have a good look around.

I had never had my eyes dilated before  so agreed as I wasn’t in a rush that day. I am so very glad I agreed.

The optometrist said I had a freckle in my left eye but he was a little concerned about it and suggested I saw my G.P. I wasn’t perturbed I am covered in freckles, moles and am fair skinned. I went off to my GP who had a cancellation in an hour so quickly was sat in front of him explaining what had been found.

I was referred to the local hospital and had a phone call within 48 hours to see the hospital ophthalmologist I still wasn’t worried it was only a freckle! I had 2 consultants peering in my eyes. I still couldn’t understand why they were so excited. I was given very little information, nothing written and monitored for 8 months oblivious of how serious this freckle would  be.

On my last visit to the local hospital I knew things had changed. The lady measuring my eyes kept going back over a certain area, she was frowning, I was picking up on her body language that all was not well. I saw the consultant who asked me if I wanted a referral to Moorfields in London she wasn’t sure if the freckle was a choroidal melanoma, I agreed , again no  written information or points of contact given for further information, being  a retired nurse I Googled it of course when I got home !

I was still in denial, I had never met anyone in my nursing career with choroidal Melanoma, my GP  had never met anyone with it so they were just been cautious surely?
A few weeks later I went to Moorfields had a battery of tests and the consultant very carefully confirmed I had cancer, a choroidal melanoma and it would need treatment. She went through all the worst case scenarios and suddenly it all began to sink in. This was serious , it could kill me! I was given a photocopied sheet briefly stating what choroidal melanoma was. I went to tell my family but felt numb this couldn’t be happening to me. More waiting for a date.

I duly had a date for plaque brachytherapy. I had of course looked on You Tube as to how this plaque was sewn to my eye ball, I needed to understand what they were going to do to me. The week in hospital  went slowly relieved by making cards and wandering the corridors at night albeit having a Geiger counter waved over me regularly. I kept a small lion one of my grandchildren had given me to remind me to be brave.

On the day I went home we drove past the Grenville Tower where so many people had died I felt bruised, battered but grateful to be alive.

I went home and found OcuMel UK on line who were my life saver. I could ask those questions that others could not answer, support at last. The physical side was not painful but the mental pain was  and is ongoing .I went to my local cancer group. They all had breast cancer, they had never heard of ocular melanoma but welcomed me. I poured my heart out to the psychologist who taught me how to cope but I still didn’t feel ill when compared to the breast cancer ladies.

I  attended the OcuMel UK conference at Reading. Suddenly there were people who knew what I had, worried about the same things as me. There was lots of information, lots to take in I could talk to my Doctors about what I wanted with conviction.

The speakers didn’t pull punches there is no ‘cure’ for this disease but there was hope, a little band of medics and researchers that were interested in us, we supported each other face to face and on line!

I also went to the conference in Holland. Again I learned more, met people who are changing the face of medicine for patients and their carer’s, this disease was on their radar.
I now have MRI’s to check for any spread to my liver. Early detection could lead to earlier treatment but sadly this is not offered to all especially in Scotland. There is always a feeling of rising anxiety before results consultations – ‘has anything been found, has the radiographer missed anything?
I have never felt ill with this disease, I always felt a fraud when I went to the cancer clinic, I didn’t look like someone with cancer, I look too well. I have this disease it doesn’t have me. It was only a freckle.

I have my black moments when I know I won’t be an old lady giving my daughters hell but some people don’t get this far.
Today I have glitter all over my kitchen floor, I am grateful , I can see the glitter and I am here making memories with my grandchildren. If I had not walked into the  opticians that day my story might be very different.

I would like to see eye tests given the same importance as other screening tests and every optician be aware that they might pick up this life limiting cancer.
I am very grateful for the NHS, Specsavers, Moorfields hospital, Southampton hospital for their ongoing care and especially the  closed Facebook members of OcuMel UK who are my lifesavers.
But It’s was only  a freckle!