The build up to diagnosis

Now if I’m being really honest, while I was in Belgium I started having my first notable symptoms. It started as a flickering above my eye. A little bit like when you walk into a room and the bulb is flickering above you. Every time it happened I automatically looked up to check for dodgy lightbulbs. There never were any. I checked if others could see a flickering light as well. They couldn’t. I then closed alternate eyes and realised the flickering was only in my bad left eye. Even so I had convinced myself that I had an eye condition called Retinitis Pigmentosa (RP). It’s  an eye condition in the family which can cause night blindness. I was starting to mourn for my night vision. Would I be able to go out at night without falling over chairs and tables? Would my husband have to lead me around the place as I slowly lost my independence. As you can see I was starting to get into a bit of a state over things that were eventually about to pale into insignificance.

On my return to London I trotted off to Windsor to see a retinal specialist. To be told, I thought, that I had Retinitis Pigmentosa, even though when I had suggested it to the optician she had told me that it looked nothing like RP and in fact was a suspicious lesion. Why did alarm bells not start clanging loudly in my head at that point? I’m actually embarrassed to say that I trained as a nurse and a midwife, but still I was being the biggest ignoramus known to man. I actually thought the optician had never seen early stages RP as it was so rare. I was therefore a special case that she would learn from. I have actually been back to see her since then to thank her for her knowledge and professionalism and to give her flowers . I recommend her to anybody who ever needs an optician. She’s fab!

Anyway I digress. Mr Windsor told me it definitely wasn’t RP, but was in fact a freckle. He said we would get it checked as people often get very excited about freckles. At this point I was starting to think I was on a completely different wavelength to Mr Windsor as I have never met anyone in all my life that has ever been excited about a freckle. I was just pleased I wasn’t getting night blindness so smiled manically and laughed as if I was in the know about what the hell he was talking about. His next question floored me. “Do you have any lumps in your breasts or problems with your bowels?” What?! He thought I had cancer? How ludicrous. “I have no lumps and bumps anywhere and I’m absolutely fine. I ran the marathon a couple of years ago, there is nothing wrong with me!” Surely people that run marathons are immune from any illness other than dodgy knees? He agreed I was probably right, but would refer me to a specialist who deals with “this sort of thing, as people always worry about eye cancer.”  Really?! Eye cancer? I felt I’d missed an important memo or something, as if people had been told all about eye cancer while I was bunking off.  Why had I spent the last two weeks googling RP when I should have been googling eye cancer? And in fact, when was the last time you spoke to anyone who ever said “I need to go and get my eyes tested as I think I might have cancer?”

Anyway I was to meet the specialist in two weeks who would hopefully tell me  it was nothing to worry about. Then he would see me back in his office to just keep an “eye” on this hysteria inducing freckle. I have never seen him again.

“He thinks I have cancer!” I was indignantly shouting at my poor husband. How dare he. Do I look like someone with cancer? I haven’t lost weight. I don’t feel sick. I eat well.  I may only exercise sporadically and I do enjoy a glass of wine, but I don’t have cancer. I decided to check who I was being referred to. I googled her. Wrong move. She was one of only six eye cancer specialists in the country. An ocular oncologist. I googled eye cancer. Second wrong move. “50% of patients with eye cancer will go on to develop metastatic disease. There is no cure. It is then terminal.” My appointment was in two weeks time. Not  wanting to sound like a boring old cliché, but I will anyway, they were honestly the longest two weeks of my life.


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