In the Eye of the Storm

This might be an obvious term to describe my current situation, but I couldn’t think of any other way to describe it!  The piece comes with a #TriggerWarning as it contains details about eye treatment & cancer recurrence.  

Photo credit: Jo Mieszkowski, Imperial College London.

Alt Text: A photo of a white-skinned, middle-aged disabled lady, sitting in her electric wheelchair.  She is wearing tortoise-shell glasses, a yellow necklace showing the slogan ‘The Musings of Spu’, silver rings & a black & white polkadot, long-sleeved top.  Her hair which is coloured ginger / pink / brown is swept up in a large clip at the back.  She is smiling.  The photo was taken in a large teaching space but the background has been blurred.

I wouldn’t usually share situations when what’s happening isn’t too clear, but I thought I would on this occasion so that you might get a flavour of what it’s like for me when a new problem comes up.

I have an eye test every year due to my cancer treatment.  About 18 months ago, a regular High Street optician saw a small mark on the back of my eye on a scan.  She asked me if anyone had ever spoken to me about it before, and I said no.  She said that the mark might have always been there and because the eye scanners are more powerful these days, it’s likely to have shown up on the scan for the first time.  She gave me a choice whether I wanted a referral or not, as it was probably nothing.  I really wasn’t sure what to do.  She explained that the mark didn’t appear to be flat, so she would recommend a referral.  I went to my GP, quite flustered and concerned, & the GP referred me to Moorfields Eye hospital in London.  A couple of months later the GP got a letter back from their eye cancer consultant to say that the mark was nothing to worry about & that it didn’t meet the criteria for referral to eye hospital, so the referral was cancelled.

Fast forward to this year & I went to a different chain of opticians in June.  This optician gave me a better description of the mark & said that it might have some yellow pigmentation inside of it.  After consulting with her colleague, she referred me to the Western Eye hospital in London this time.  This hospital is within my catchment area & much easier to travel to (which was great as the appointment was for 8.20am!)  After four months of waiting, Western Eye hospital gave me an appointment for October.  

I don’t know if anyone reading my blog has ever been to the Western Eye hospital, but it’s chaos.  The site is undergoing a huge refurbishment & even regular patients were having difficulty wayfinding (not great for an eye hospital!)  I felt like I was in a cattle market – the staff were shouting out different patient names & running around, the patients were all squeezed into tiny waiting rooms like lab rats & I had to go the long way around to get to scanners & medics as many routes & lifts were blocked off.  Some of the treatments e.g. the eye pressure check machine, was in an area which didn’t temporarily have access.  I know opticians have a new way of checking eye pressure now which is to lightly touch your eye with a handheld machine.  I can’t even put contact lenses in so I wouldn’t allow them to do use the handheld device on me.  In the end, I referred the nurse to my last opticians’ appointment which said my eye pressure was fine (it’s always fine).  All the chaos made me so nervous that when it came to my eye test, I wasn’t calm.  The scanners that I did use weren’t wheelchair accessible so I had to wobble about on one foot to reach them, & then flop back into my wheelchair once the scan was over.  It was exhausting.

My partner & I waited hours to be seen by a consultant.  I think it was over 3 hours but I’m not sure – I stopped looking at the time.  Because different consultants were dealing with different eye conditions, patients were called at random.  I went to sit outside of the waiting room.  Another man joined me & we chatted for a while.  The two of us ended up being quite useful as we started giving directions to lost patients!

When I finally got to see a consultant, in a corner of the hospital corridor, by a set of steps which was the only space for her ‘consultation room’, she ‘googled’ my symptoms in front of me.  Yep.  I was stunned.  Well to be truthful, it made me cry.  I’m not sure what information the google search gave, but she then went to consult with a senior colleague.  There were just curtains separating all the medics so I could hear everything that was being discussed.  She returned to describe what she saw from the scans – a mole the size of a pinhead with yellow pigmentation in it, at the back of my eye, near the optic nerve.  Yet she couldn’t tell me any more than that so she referred me to Moorfields Eye hospital.  I pressed her on whether or not it could be cancerous.  She said she couldn’t say.  To try & help, she said that if Moorfields contacted me with an appointment in two weeks’ time, the mark was likely to be more serious, like cancer.  By now I was beside myself.  She wrote a very brief referral which was about two words long & copied in my GP.  The referral caused my GP to ask me what kind of medic she was!  I mean, who knows.  You wouldn’t know from my referral letter why I was being referred!

So another anxious wait begins.

This is what I’m consoling myself with:  

• Moorfields Eye hospital has made an appointment outside of the two weeks’ waiting time for a cancer referral.
• Eye cancer is rare.
• Breast cancer doesn’t usually spread to the eye; the usual places are armpit (lymph nodes) lungs, brain, or the long bones in the arm & the leg.
• Moorfields didn’t want to see me last time when I was referred, so it can’t be that serious.
• I’ve probably always had this mole because it’s a birthmark & now that the scanners are more powerful, opticians can pick it up.

And in my darker moments:

• Something got missed by Moorfields 18 months ago (when they chose not to see me).
• Key information was missed by Western Eye hospital because the referral was poorly written.
• The cancer unit waiting times are out of the two-week period because it’s so busy.
• The spot that appeared a year ago has increased in size.
• I’m the type of person that strange things happen to, so even if breast cancer doesn’t usually spread to the eye, it might have done in my case!
• If they do a biopsy (the letter doesn’t say either way), then that means a needle (I’ll leave you to guess where!)

Moorfields Eye hospital is rated the best hospital in London & the best hospital in the UK according to the NHS (National Health Service) league table.  It’s also regarded as one of the best eye hospitals in the world as well as being a global centre for eye research and education.  I feel sure that I’ll have a better experience with their medics.  They looked after my Nan for a number of years & she always spoke very highly of them.  Sadly, she lost her sight to glaucoma & she had very little, if no sight, when she passed.

My eye doesn’t hurt me at all.  I was completely unaware of anything different.  Sometimes it feels a bit strained but I think that’s me getting used to my new reading / computer glasses.  However, for another week & a half, the scanxiety continues.

I’ll try & give an update on how it went with Moorfields in my December blog.