Monthly Archives: October 2016

Post-appointment panic

Following last Monday’s check-up appointment with my original consultant at the Royal Surrey County Hospital, the patient’s copy of his letter to my GP dropped through my letterbox on the Saturday morning.  “Cor, that was quick!”, I thought to myself as I opened it and started reading.  I only managed to reach the third line before exploding, “WHAT?!”, upon reading that upon examination, the visual acuity in my left eye had been “6/12, with spectacle correction”.  My left eye is my ‘good’ eye and throughout this whole nightmare, since my right retina originally detached and tears were found in my left retina in April 2014, the visual acuity in my left eye has been 6/5.  So the hospital letter was saying that it was suddenly 70% worse than usual.  Bearing in mind that I rely on my left eye for everything and that the minimum eyesight requirement for driving is a visual acuity of at least 6/12, I was more than a little panicked.

I finished reading the letter before folding it up and putting it back in its envelope.  I immediately got it out again and re-read it in case the figures had changed.  They hadn’t.  The calm part of my brain was quietly telling me that obviously it was a mistake; I hadn’t noticed any difference in my vision; and the  best thing to do would be to drop an email to the medical secretary querying it.  This same calm part of my brain remembered asking the nurse who carried out the visual acuity test, “Am i still 6/60 in the right and 6/5 in the left?” and her confirming that this was correct.  The rest of my brain, however, was screaming, “SH*********, I need to get it checked!”.

Without further ado, I rang an optician’s in Canterbury where I’d previously been for pressure checks, and asked if I could call in for a visual acuity test.  “A what?”, responded a confused voice on the other end of the line.  “You.  Have.  Got.  To.  Be.  Kidding.  Me.”, spat the frustrated part of my brain, “YOU WORK IN AN OPTICIAN’S AND YOU DON’T KNOW WHAT VISUAL ACUITY IS?!”  I calmly took a deep breath and explained, “Visual acuity – it’s the part of the eye test where the patient reads the letters on the Snellen chart”… [“Hang on”, interjected the calm part of my brain, “If he doesn’t know what visual acuity is, he’s hardly going to know what the Snellen chart is, is he?!”]… “I mean, the eye chart”, I continued.*  “Ah”, he answered, still sounding slightly bemused.  “Let me just go and find someone to ask if we can do that.”  My patience was beginning to wear thin by this time so I suggested through clenched teeth, “Would it be better if I just make an appointment for a full eye test?”  “Oh yes!”, he said with relief, obviously feeling back in control of the situation.  However, there weren’t any available appointments until the end of the following week.  “Have  a nice day!”, he breezed cheerily as he said goodbye.  I choked back a growl in return and proceeded to try my luck with another optician.  This time I went straight for the full sight test option.  They had a free appointment in 45 minutes time.  “I’ll take it!”, I exclaimed, blurting out my details before dashing to the car and promptly getting stuck behind the slowest driver imaginable.  “Some people just shouldn’t be on the roads!”, I muttered in irritation, well aware of the irony of the situation.

Despite the best efforts of the slowest driver in the world, I made it to the optician’s with four minutes to spare.  Dot on time, the optometrist appeared: a very short man with a grey, expressionless face which reminded me of John Major.  My initial impression wasn’t helped by his apparent lack of a sense of humour, as my jokey comment that I was there for an expensive visual acuity test was met with pursed thin lips and an unamused sniff.  We reached the all-important test, and I went through my usual pained efforts to read the top three letters on the chart with my right eye, flicking my gaze from side to side as I tried to sneak up on the blurred shapes and discern them using the parts of my retina which are less damaged.  We then switched to my left eye and I immediately focussed on the clearest line towards the bottom of the chart, reading out the letters confidently before attempting to make out the two lines below.  Sheer panic and determination must have improved my vision as the final result for my left eye was 6/4 (wow!) and the usual depressing 6/60 for the right.  “That’s okay then”, I sighed with relief, “The hospital must have made a mistake in the letter.”  “What did the hospital say it was?”, enquired the grey-faced optometrist.  “6/12!”, I answered indignantly, my voice rising a couple of octaves.  “Yes, that’s quite a substantial difference.”, he agreed, the most animated he’d been in the entire duration of my time there.  I paid the bill and, as I drove home, contemplated sending the receipt to the hospital along with a strongly-worded letter about the importance of a) recording the correct test results and b) proof-reading medical letters.

*Note: For the benefit of Specsavers employees and anyone else who may not know what visual acuity is, it’s the method of determining how clearly someone is able to see with their central vision.  The Snellen chart (i.e. the eye chart with the letters of varying sizes on it, which the patient is asked to read during an eye test) is used in order to test this.  The results of the visual acuity test will consist of two numbers for each eye.  6/6 (or 20/20 when measured in feet) refers to ‘normal vision’ and means that if the patient is sitting at a distance of 6 metres away from the chart, he/she is able to correctly identify letters that a ‘normal’ sighted person should see at 6 metres.  6/60 means that the patient could only see at 6 metres what a ‘normal’ sighted person would be able to see at 60 metres.

 

 

Twinkles at twilight; dread at dawn

After contemplating taking part in a sponsored abseil of the ArcelorMittal Orbit, the UK’s tallest sculpture in the Queen Elizabeth Olympic Park in order to raise money for Moorfields Eye Charity, my sister decided to organise a charity tea party instead.  Her decision to abandon the idea of throwing herself off a 114.5 metre eyesore in central London in favour of sitting down to drink tea and eat cake in a leafy Surrey village was one which was wholeheartedly endorsed by myself.  She arranged the event for the evening before my check-up appointment with my original consultant at the Royal Surrey County Hospital so that I’d be around to help with the baking and eat plenty of cake… err, I mean take part in the event itself.  She christened the evening ‘Twinkles at Twilight’ as the fundraising was for both Moorfields Eye Charity and Marie Curie.  For anyone who doesn’t quite follow Lucy’s logic, the ‘twinkles’ relate to a twinkle in the eye and ‘twilight’ refers to the time at which Marie Curie nurses begin their shifts to provide night-time palliative care for patients in their own homes.  The reason she wanted to support these two charities is probably best explained in her own words:

“Palliative care nurses enable terminally ill patients to spend their last days at home with their family.  Caring for a very ill relative is emotionally and physically draining, involving being up numerous times in the night. Marie Curie nurses give relatives a night of cover so that relatives can get an undisturbed night. This enables the carer to recharge their mind and body as much as possible in the circumstances.  Current funding levels only allow a limited number of nights’ cover.  They were my twilight angels when my Grandad was ill.
I grew up aware of how my Gran’s sight trouble increasingly limited her activities as it got worse.  Then in 2014, my sister had a retinal detachment.  This is when the reality of potentially facing sight-loss really sank in.  She has now had five surgeries to reattach it as she is in the minority (10%) of people who suffer recurrent re-detachments.  Each time her retina detaches, she loses more sight.  The fear of losing her sight is very real.  Moorfields are affiliated with University College London Institute of Ophthalmology and carry out sight-saving research.  They also raise awareness of eye health to help prevent problems.  Close your eyes for 60 seconds and imagine you can never open them again.  That’s why I support Moorfields.”
Once the theme was set, we cracked on with the serious business of baking various eye and star themed goodies and getting other bakers on board to help.  The final creations included cupcakes with the Moorfields Eye Charity logo in fondant icing, fairy cakes with little faces made out of chocolate buttons and edible eyes, star-shaped shortbread, and a dazzling array of fairy cakes adorned with various types of edible glitter and tiny stars.  Fairy lights were borrowed from people far and wide, and the Duke of Edinburgh student volunteering at my sister’s workplace was promoted to Artistic Director of Operations and did a fantastic job of tastefully decorating the place.  Lucy had also come up with a few games to keep people amused throughout the evening, including ‘guess the number of stars in the jar’, and ‘guess where the shooting star is in the sky’.  My Eye to Eye walking buddy and myself were in charge of these, and it’s just occurred to me that there were no eye-themed games.  We could have got people to guess how many retinal detachments the pair of us have had between us.  Then again, that may have been tempting fate.  Anyway, the evening went swimmingly and people were extremely generous both in making donations and stumping up money to participate in the games (£1 a go – a bargain!).  We had a couple of rather over-excited boys to thank for interest in the games, as they were so determined to win prizes that we became slightly worried that their father might be reduced to bankruptcy during the course of the evening.
Cupcakes with the logo of Moorfields Eye Charity on them

Cupcakes with the Moorfields Eye Charity logo in fondant icing

I crawled out of bed at the crack of dawn the following morning after a restless night which could probably be blamed equally upon excess sugar consumption and pre-appointment dread.  Even though it was just a check-up with my original consultant and I knew he wasn’t going to suggest any treatment due to the fact that I’m currently under Moorfields, I still hadn’t been able to block out the familiar fear of, “but what if he finds a hole or tear in my ‘good’ eye?” or “what if the detachment in my bad eye has got worse?”.  So I sat with my sister in the chilly air-conditioned waiting area, shivering as much with cold as in fear.  An hour passed, and I was called in by the nurse for the initial sight test.  Another half hour passed, then another, and the clinic gradually became a little less crowded.  After another half hour, those of us who were still patiently waiting glowered in disbelief as a patient arrived, handcuffed to someone else with a prison officer in tow and was promptly fast-tracked through the system.  “Ah!”, remarked my sister, “So that’s the way to skip the queue in the eye clinic!”.  I briefly considered whom I could murder in order to achieve this status but was fortunately interrupted in my musings by the familiar soothing Irish tones of the consultant calling my name.  I leapt to my feet and practically ran to his door before he could change his mind and call in another patient instead.
“So how are you doing then, Emma?”, he asked.  “Ploughing on”, I trotted out my stock answer before remembering that actually I could tell him the truth without fear of him either rolling his eyes in boredom or telling me not to be negative, as many people seem to do these days.  “So what are Moorfields planning for you then?”, he enquired, at which point I launched into a brief run-down of the rough plan.  He nodded approvingly, adding admiringly, “Well, you have learnt a lot about your eyes, haven’t you?!”  I thought it probably wasn’t the time to tell him about my plan to go on Mastermind with the specialist subject of ‘retinal detachment’, and left him to get on with the usual business of checking my eye pressures and inserting dilation drops before sending me back out again to wait while they took effect.
Twenty minutes or so later I was back in his consulting room for the dreaded retinal check.  Fortunately, it was all fine.  Or as fine as it can be with my eyes.  We said a cheery goodbye and bolted for freedom.  The fact that we were the very last people to leave the clinic after having spent the entire morning there no longer mattered.  Nor did the fact that we suddenly realised our parking ticked had expired over half an hour earlier and we may have a huge parking fine to deal with.  We called into the hospital cafe for celebratory tea and cake (well… the previous evening’s sugar rush had subsided by this time), and hurried back to the car in the bright afternoon sunshine, as fast as my dilated eyes would allow.
Eye fairycakes

Eye fairycakes

Note: The final amounts raised at the Twinkles at Twilight Tea Party were: £210 for Moorfields Eye Charity and £178 for Marie Curie.  Huge thanks to everyone who supported the event, whether it was baking cakes, eating them, or both! 🙂

“When will it ever end?”

“When will it ever end?” or Will it ever end?” is a recurring and ever so slightly desperate query on the RD support group site I belong to.  A few weeks ago, one of my eye buddies commented that his eyes have been stable for around eighteen months after three years of temporary sight loss due to diabetic retinopathy, numerous operations, sadness and anger.  But he went on to say that he knows the time will come when he has another bleed in his eyes and the bottom will fall out of his world once again.  This fear of further issues is one which those of us who have had multiple detachments and complications all share.  It’s unsurprising that we feel this way, considering that we’ve all lost a certain amount of vision already.  According to Moorfields Eye Charity, more than eight in ten British people say that sight is the sense that they would least like to lose.  (Presumably the remaining one and a bit people are the ones who have already lost their common sense.)

The fear and accompanying anxiety can be exhausting at times.  A month or so ago at work I was obviously looking particularly knackered, as a colleague asked me if I was having trouble sleeping again.  (See ‘To bed, perchance to sleep..? (Aye, there’s the rub!)’ for an account of my typical nocturnal experience.)  When I nodded, he exclaimed incredulously, “Well what are you worrying about now; you don’t have another Moorfields appointment until January!”  I thought it unwise to point out that, unfortunately, Moorfields is unable to issue a decree at one appointment commanding my sodding retinas to behave themselves until the next check-up.  I also thought it probably wasn’t worth explaining that in all of my waking hours, eye-related anxiety buzzes around my head to a greater or lesser extent, like a wasp waiting to sting.  So instead, I just sighed inwardly that frustrated sigh of, “Is it really that difficult for some people to understand?”  Apparently, it is.  When I told my Dutch eye buddy that I think our eye problems are the hardest thing to deal with in life, she said:

When I first had my initial surgery I mentioned that period as the darkest period of my life.  People stared at me like I wasn’t normal.  They totally didn’t understand.  From that moment I never mentioned it again.  I think that made things even harder for me.  The not being able to share, because no one ever listens really or even tries to understand; that’s what makes it so hard to cope with.

It’s my Dutch eye buddy who has been the latest person in our group to ask the recurring question, put specifically as: “Will it ever stop?”.  She’s already had three lots of surgery on her left eye and one on her right eye for retinal detachments.  A couple of weeks ago, after months of intermittent worrying that something wasn’t quite right, she was diagnosed with a macular hole in her right eye and is now scheduled for her fifth lot of surgery this coming Tuesday.

Fortunately, she’s since felt able to talk about her eye issues to a few people, explaining about what she can and can’t see and describing the posturing she’ll have to do after the macular hole surgery.  She told me what a difference it makes when people are interested and try to understand, and how it makes her feel cared for.  Having people around who attempt to understand unfortunately doesn’t make it all go away, but it does make it slightly easier to cope with.  Of course, this doesn’t mean that we need people to be constantly asking us how things are with our eyes.  There are many different ways of showing compassion.  Considering the fact that we can’t answer the question, “When will it ever end?”, I guess the only thing to do is to try and find better methods of coping with it.  With that in mind, if everyone could just send a huge beam of positive vibes across to my eye buddy in the Netherlands on Tuesday, I’d be very grateful…