Monthly Archives: June 2015

Pondering Posturing

Hmmm… posturing.  Before my retinal detachment I only really came across the word in terms of several people telling me, ‘Don’t slouch, you’ll develop a bad posture!’  I have that typical bad habit of tall people in trying to make myself look more inconspicuous at times by hunching over slightly.  These days, the word ‘posturing’ conjures up an entirely different meaning.  For anyone reading this who hasn’t had the misfortune to experience the RD meaning of posturing, let me explain.  Retinal re-attachment surgery involves removal of the vitreous fluid from the eye, flattening of the retina, and insertion of a gas bubble or silicone oil to keep the retina in place.  It acts like an internal splint, to hold the retina as it heals.  The gas then gradually disperses over time (the time depends on whether a short or long acting gas bubble has been used) and is replaced by the patient’s own natural fluid.  The oil has to be surgically removed at a later date.  The gas or oil bubble floats in the eye (think of the bubble in a spirit level), so the patient will usually be told to sit or lie with their head in a certain position, to make it float and push against the part of the retina which needs flattening.  It’s this act of lying or sitting in a certain position which is referred to as ‘posturing’ in the world of retinal detachment.  The posturing position will depend on the location of the detachment.

My most challenging period of posturing was July 2014 (did I mention that it was the WHOLE of July?  I mean, the ENTIRE MONTH?!).  During this time, my posturing routine was as follows for the first two weeks: half an hour lying on my stomach, clutching a couple of pillows to my chest, with my head tipped forwards, chin tucked into my chest and forehead touching the mattress.  Then half an hour lying on my left-hand side, after which time I was permitted 10 minutes break before starting again on my stomach.  Oh, and then i had to sleep all night on my left-hand side.  Now you’d think this would be a bit of a doddle, right?  When my consultant described what I had to do I nodded as enthusiastically as I could manage in my post-op brain-fogged state and remember thinking, ‘Yep, I can do that!’  Back at my mum’s house a few hours later, I wasn’t feeling quite so confident.  In fact, I was feeling decidedly sorry for myself.  In addition to the eye ache and occasional stabbing pain of the stitches, I had back ache, neck ache, shoulder ache, headache… and when I say ‘ache’, I mean ‘ooooooouuuuuuuccccchhhhhhh!’. A good three of my precious ten minutes of break time were spent groaning loudly and cautiously moving my aching limbs in a massive effort to haul myself upright very slowly in an attempt to minimise the pain and avoid the inevitable dizziness which washed over me like a sickening cloud whenever I sat up.  A few days later I started to develop sore patches on the skin of my shoulder and hip from the pressure of spending so much time lying on my side and was prescribed barrier cream.  ‘Indications for Use: Protection of at-risk skin from damage associated with incontinence and related symptoms’, stated the instruction leaflet.  I had the sneaking suspicion that it was sniggering at my dismay.  ‘I’ve been prescribed cream that’s usually used for INCONTINENCE!’, I wailed to my sister in disgust.  When the GP later explained that the sore patches were occurring because I was thin and a bit bony, I decided to attempt the alternative solution of consuming extra supplies of chocolate, which was far more satisfactory if disappointingly ineffective.  I still don’t understand why I haven’t managed to put any weight on during my long periods of enforced inactivity due to posturing.

After a few more days of groaning and occasional short bouts of grizzling face-down into the pillows, I followed the advice of a friend and packed my sister off to purchase a memory foam mattress topper.  It wasn’t the magic route to glorious pain-free comfort I’d been hoping for, but it certainly helped.  Another thing which helped was the change in posturing routine for the remainder of July to fifteen minutes face-down, fifteen minutes on my left-hand side, followed by a positively luxurious thirty minutes break.  Suddenly, I was in heaven… okay, maybe not heaven, but it was certainly an improvement from the hell of the previous two weeks.  I could eat all my dinner in one sitting instead of having to break off when my ten-minute break finished; I was able to have a long shower, allowing the hot water to soothe my aching shoulders; and I had time to shuffle around and reacquaint myself with the rest of the house instead of being confined to one room.

All this posturing hasn’t been much fun for my family either, but I definitely couldn’t have got through it all without them.  My mum, who cast aside her watch when she retired from teaching a few years back, declaring triumphantly that she would no longer be governed by time, was suddenly setting the oven timer and supplying me with cups of tea and meals in my ten-minute breaks, as well as putting two lots of eye drops in for me four times a day.  (I couldn’t see to do it myself at first, but have since mastered the technique.)  ‘What do you want in your next break?’ became a constant refrain, as did the familiar sound of my mum plodding up the stairs talking to someone on the ‘phone and entering the room of posturing doom with the words, ‘Oh, she’s face-down now, she won’t be able to talk to you at the moment, you’ll have to wait until she’s on her side.’  My sister would call in during her breaks from work, bearing plates of ‘good eye food’ and relating stories to attempt to take my mind off things.  She also encouraged the dogs to venture into forbidden territory upstairs with the excuse that they cheered me up, despite my mum’s increasingly half-hearted attempts to maintain control of her usual house rules.  My aunt came to stay for a week and decided she’d keep me amused by reading me a novel.  I was somewhat concerned that her choice of ‘The Woman Who Went to Bed for a Year’ by Sue Townsend might turn out to be prophetic, but she carried on regardless and my amusement at the main protagonist’s antics was matched only by my aunt’s entertaining but rather strict sensoring of certain excerpts she deemed inappropriate for reading aloud.

A few people have commented that I must have got incredibly bored, or asked me what I did to pass the time, but perhaps I’ll tell you about that in another post… it’s bedtime now, so I’m off to lie down on my left-hand side…

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Home Sweet Home…?

So, six weeks after leaving my little house for my fourth lot of eye surgery, expecting I’d be back after just a couple of weeks, I finally made it back and unlocked the door to find an envelope from my opticians on the door mat declaring in bold green print, ‘Your eye health check is due.’  I think that’s what is generally descibed as irony.  I tossed it on the side, making a mental note to write a strongly-worded letter to my opticians, to let them know that if they’d been a little more vigilant about informing me of the fact that a change in floaters can be a symptom of a retinal detachment, I might well be happily popping along for my usual eye health check, rather than writing to inform them that I would no longer be requiring their services as well as actively advising friends and colleagues to get their eyes tested elsewhere.   After muttering a few choice expletives along the lines of ‘useless ruddy opticians’, I got on with the business of wandering around the house in a somewhat dazed manner, trying to get used to the different quality of light from that in my mum’s house and working out my visual field markers again by standing or sitting in various set points and comparing what I could see to what I was able to see before the last two lots of surgery.  I then spent a good while staring at my floaters on a blank-ish wall in the living room before going into the bathroom and backing straight out again because of the unfamiliar brightness of the overhead light bouncing off the white tiles.

‘How does it feel being back at home?’, my sister asked, when I’d finally paused in my routine of wandering around and staring at various walls and objects for long enough to sit down.  ‘Aaaaaaaagh, I don’t like it!’, I cried, in a manner which would do little to assure a casual observer of my sanity.  ‘Well don’t worry for now’, advised my ever-practical sister.  ‘Let’s have a nice cup of tea, and then look up places to live in Surrey so that you can move and be near me and mum.’  She wasn’t joking either.  A few days earlier I’d caught her looking up flats in the vicinity of Moorfields Eye Hospital in London.  She said she was just curious but added that it would make the travelling considerably easier in an emergency.  She did have a point, however I noted that the cost of renting a flat in London certainly wouldn’t offset that of all the money spent on rail tickets getting there and back for appointments and surgeries, even at peak times.  My sister marched off to put the kettle on, whilst I trailed behind her like a petulant child, wailing, ‘But I don’t want to live in Surrey… I want new eyes!’  Of course, in the customary British tradition, a strong cup of tea made everything seem better (despite the shocking lack of chocolate biscuits to go with it), or at least it helped us to crack on with the business of pretending it was.

Note: The business of getting on with pretending everything was okay included a trip out to the local supermarket to stock up on chocolate biscuits.

I spy with my little eye something beginning with F…

…I stare in terrified concentration, heart thumping, at the black floater casually hovering against the pale wall.  The by now familiar sick feeling of please-don’t-let-there-be-any-new-symptoms rises in my stomach and my jaw clenches as I turn to look at a different part of the wall.  The floater disappears.  I turn my head back to the original spot.  There it is again.  I stare at it, whilst running through the options for emergency eye clinics in my head before the realisation dawns that it’s actually just a large fly on the wall.  I let out a huge sigh of relief as I feel my whole body relax, and the fly escapes a flattening due to my gratefulness that it isn’t a floater (although to be fair I’d probably miss anyway).

It’s this constant fear of any changes in vision and the possible symptoms of another detachment which is so difficult to live with.  I’ve jumped out of my skin at a blackbird swooping down in my peripheral vision, thinking it was a floater, burst into tears after seeing repeated camera flashes during a walk at dusk, thinking they were in my eye, and lain awake all night unable to sleep after seeing a flash on my bedroom wall because I couldn’t be sure whether it was external or internal.  Sometimes I close my eyes when the floaters in my good eye are driving me particularly crazy, only to find that I can still see some of them with my eyes shut.  I won’t even start trying to describe the weird kaleidoscopic lights and flashes you sometimes see in the dark immediately after surgery.  A few times I’ve started awake in a panic following nightmares that I’m having another detachment and had to switch the light on to make sure I can still see.  Since my most recent surgery I keep getting flickering at the bottom of my eye, but after my fourth surgery the flickering was at the top.  I think it’s to do with the areas which have been lasered but it can be hugely off-putting, as can what one RD patient described as the ‘lava lamp’ blob of light which occasionally scoots around the edge of my vision.

I have measurements for myself to test my visual field, depending on where I am.  If I sit at the table at my mum’s house and stare ahead at the door handle, I know that I should be able to just about see the light on the ceiling above if I look with each eye in turn, whilst keeping the other one closed.  I do the same in my own home, but sitting at the table and staring at the top piece of trellis out in the garden to check that I can still see the light above me.  At work, I stare straight ahead and check that I can see the top wall-mounted shelf through each eye.  When I had my third detachment with the oil still in, I couldn’t see the shelf at all.  I was excited when I returned to work after my third surgery and realised that I could actually see it again. Of course I’m well aware that doing this kind of thing makes me look either slightly crazy or possibly somewhat over-familiar because of the amount of winking which goes on, but I still find myself compelled to constantly check my vision in this way.  I’ve occasionally caught my work colleague gazing at me with a perplexed expression and had to explain what I’m doing.  Some days are worse than others, for some reason.  I have what I now call ‘paranoid eye days’, which are the particularly bad ones.  It’s comforting to hear from other people in the RD Facebook support group who report things like seeing a load of new floaters and then realising it’s actually ants on the wall, or jumping out of their skin because of flashes before hearing a clap of thunder following the lightening.  I was chatting to an eye buddy in the Netherlands a few weeks ago who said that sometimes she has to laugh at herself and what she must look like doing all the visual field checks, and other times it makes her want to cry because she doesn’t want it to rule her life.  We’re told by our surgeons to be vigilant and get any changes checked immediately, but this also makes us paranoid.  I don’t know what the answer is really, but if anyone has any useful suggestions, please let me know…

‘Eeeeeeeeeeeeeeekkkkkkk, eye surgery under local?!’…

… So commented one friend via email when I told him of my impending fourth operation.  I wasn’t feeling too chuffed about the prospect either.  On the one hand, at least I didn’t have to worry about the possibility of not waking up from the op, but on the other hand I was more than a little concerned about how I was going to keep my head still, particularly as I tend to get the shakes in stressful situations.  With my three previous surgeries under general anaesthetic, the anaesthetist just popped an extra blanket over me when my teeth started chattering, thinking I was cold.  What on earth was I going to do if I started my usual shaking routine whilst having my eye cut open under LOCAL?  This worry weighed heavily on my mind in the weeks leading up to the op, and I wasn’t entirely convinced by my fellow eye buddies assuring me that I would keep still without any problems, and it would all be fine. The dreaded day dawned and I was walked into the anaesthetist’s room, shaking as predicted.  ‘Sorry, it’s a bit cold in here’, the friendly anaesthetist apologised.  They’re always friendly, and many have an uncanny knack of actually making me laugh.  And laugh in a genuinely ‘you’re funny’ way, rather than a somewhat hysterical ‘what-are-you-about-to-do-to-me’ nervous laugh.  The first pair I encountered (they often seem to work in pairs) were like a comedy duo.  I probably didn’t help matters by asking them if they were sure I’d wake up again after the operation.  I feel compelled to ask this each time and have received various answers, from the joking ‘You hear that – she thinks we’re not going to do our job properly!’ to ‘There’s an important football match on tonight you know, and I won’t be able to get back and watch it until I’ve woken you up again!’ to the slightly disconcerting, ‘But of course, we get paid a bonus for the patients we wake up again’, said with a perfectly straight face.  (With NHS targets, anything is possible.)  Anyway… I asked how I could make sure I kept still, and was told, ‘Oh don’t worry, you’ll keep still, but just let us know if you need to cough or anything.’  Hmmm.  I remained unconvinced, but it was too late by this stage.  I lay still with my head in the bowl at the end of the bed as they covered up my other eye and put a small tent-like structure over my face with a hole for my bad eye.  I felt the sedative entering my body via the cannula in an indescribable ‘whoooosh’, and suddenly it was literally as if I didn’t care about anything any more.  Well, maybe that’s taking it a bit far, but at least I wasn’t shaking. I felt pressure as they injected anaesthetic into my eye via a needle down the side of my eyeball and shortly after that the roof of my mouth started to feel numb.  This paralyses the muscles in the eye and keeps it open, so it doesn’t matter what the other eye does although I opted to keep it shut through most of the surgery.  Every now and then I plucked up the courage to open it a crack and peek out, but I was aware only of the bright lights above and could see nothing due to the tent-like structure.  I felt them putting the clamps on to hold the eyelids open, but there was no pain.  I heard someone ask if they could put some music on, and thought ‘Oh good’, anticipating a relaxing classical piece.  Seconds later, the sound of ABBA disturbed the relative peace of the operating theatre.  ABBA?!  ABBA?!  What sort of music choice is that as the soundtrack to eye surgery?!  I mean… Bach, Mozart, Handel Beethoven, Chopin… the list of possibilities is endless… but ABBA?!  I don’t think I’ll ever be able to listen to ‘Dancing Queen’ again without wanting to stick my fingers in my ears. Once I’d managed to drown out the inappropriate cheeriness of the Swedish quartet, I started to realise the wisdom of such a distraction method as I tuned into comments from the surgeon such as, ‘scissors please’, and (asking the consultant who was supervising), ‘Shall I trim this right up to that previous area of treatment?’.  I couldn’t see anything out of the eye being worked on – everything was black/grey but now and then i saw the dark silhouette of an instrument being inserted and removed again.  It was a bit like being out in a dark night and suddenly seeing a pitchfork being thrust into view.  This was followed by a request for ‘laser please’ and then shortly afterwards discussion about a gas bubble, by which time I’d guessed that things weren’t going according to plan and I must have had another detachment.  Sure enough, I was told at the end that my retina had detached a small amount bottom right, but a short-acting gas bubble had been placed and the surgeon thought everything would still be okay. It’s just as well that I was blissfully unaware at this point of the fact that exactly two weeks later I’d be back in theatre having emergency surgery for my fifth detachment.  Also under local.  Eeeeeeeeeeeeeeeeeeekkkkkkkkk!

I’m not usually a violent person, but…

… sometimes I feel an almost irrepressible urge to smack people in the mouth because of some of the incredibly tactless things they say concerning my eye issues.  One friend responded to the news of my second detachment with the blasé comment, ‘Oh that’s annoying!’  ‘ANNOYING?!’ I wanted to scream at him, ‘ANNOYING?!’  Dropping a pint of milk is ‘annoying’.  Stepping in dog pooh is ‘annoying’.  Running out of teabags is ‘annoying’.  Having your retina detach for the second time is a tad more than merely ‘annoying’.  This friend was very lucky to have made this remark via text rather than in person.  Another comment which tends to make me gnash my teeth and revel in murderous thoughts about the person uttering it is the classic, ‘Oh, but you must be positive’.  Now firstly: positivity isn’t going to make the retina stick.  Don’t argue.  That is a scientific fact.  If you don’t believe me, ask any retina surgeon.  Secondly, anyone who has been through retinal surgery will know that you simply have to be positive just to get through it.  Why on earth would we put ourselves through more surgeries if we weren’t positive in thinking that the next one will be the one which is ultimately successful?

As with most things this works both ways of course, and some people have said things to me which have helped massively and I tend to file these comments away in my head and fetch them out when most needed.  A few people have told me to just take one day at a time, which is certainly a sensible way of managing the situation.  A work colleague advised me to ‘make the most of every single joy’, which is also helpful as there is always something which fits into that category, even if it’s simply managing to get an eye drop in first time.  A complete stranger on the RD Facebook support group page wrote a post before my third surgery, ‘You’re gonna ace this!’ and I found myself repeating it to myself when I woke up from the anaesthetic.  During one long day of posturing after surgery number 4, I was talking to Lucy about about how some people say incredibly thoughtless things and yet other people say things which can help enormously.  I thought it might be amusing to come up with a tongue-in-cheek list of ‘useful things to say to an RD patient’ versus ‘unhelpful comments’, and so I posted on the RD Facebook support group to ask what my fellow eye buddies would say.  Here’s a list of my top ten comments in each category:

Unhelpful things to say to an RD patient

  1. ‘Your eye looks fine to me’.
    Yep, it may well look fine, but this doesn’t tell you anything about how it feels, the degree of vision remaining, or what’s going on at the back of it.
  2. ‘Comparing RD surgery to cataract or LASIK surgery.’
    Hmm, not the same… there’s a big difference between the front and back of the eye.
  3. ‘At least you have your other eye’.
    We have two eyes for a reason.  Also, ask anyone who’s had a retinal detachment in one eye and they will almost certainly tell you that the huge thankfulness they have for their good eye is matched by a similarly huge amount of terror should anything go wrong with it.  A person is 10% more likely to experience a detachment in their other eye if they’ve already had a detachment in one.
  4. ‘Are your eyes all better now?’
    People are never simply ‘all better’ with retinal issues.
  5. ‘You can always get a guide dog’.
    Do I really need to explain why it’s a bad idea to say this?
  6. ‘You should be used to the surgery by now’.
    Being used to the surgery certainly doesn’t make it any easier!
  7. In response to the explanation, ‘Well, if I shut my good eye, I can’t see your face properly’: ‘Well that’s a relief, you’re not missing much’.
    Not funny.
  8. ‘There’s always someone worse off than yourself.’
    I’m well aware of this.  The problem is with my eye, not my brain.  Thinking about this just makes me feel more depressed.
  9. ‘So-and-so is blind/only has one eye and he/she manages okay.’
    This is a tricky one.  On the one hand it is often very helpful to hear about how other people cope.  On the other hand, everyone is different, everyone’s eyes are different, and experiences, circumstances, and eye conditions vary wildly from person to person.
  10. ‘Can you not do such-and-such [insert wildly inappropriate activity] whilst posturing?’
    If in doubt, try maintaining the relevant posturing position for an hour yourself whilst doing said activity, and then you’ll have you answer.

Useful things to say to an RD patient

  1. ‘Just take one day at a time.’
  2. ‘Chin up, face down!’
  3. ‘Stay strong – you can get through this’.
  4. ‘I’m praying for you / sending positive vibes / thinking of you.’
  5. ‘Is there anything I can do for you?’
  6. ‘Everything will be alright in the end, and if it’s not alright, it’s not the end!’
  7. ‘Make the most of every single joy.’
  8. ‘Use the time you’re out of action to listen to something that you wouldn’t normally have time to listen to.’
  9. ‘How are you feeling?’ (and listening to the answer.)
  10. ‘Here – have some chocolate!’  (extra points if providing chocolate) 🙂

Where I’m at now…

…39 years old, staying with my mother whilst recuperating from eye surgery number 5, living like a vampire because my eyes can’t take the light, and devouring ‘good eye food’ like there’s no tomorrow.  Recent achievements have included the ability to get my own eye drops in first time and suppressing the tendency to jump out of my skin every time someone approaches me from the right-hand side, as I’ve now lost a fair bit of my peripheral vision.  Here’s a brief timeline of events as to how I reached this stage…

  • 17 April 2014 – Surgery No 1 at the Royal Surrey County Hospital Right vitrectomy (taking out the vitreous fluid), cryotherapy (freezing treatment to basically weld the retina back together), and a 4-week gas bubble inserted in my eye to hold it all together (which actually lasted for 9 weeks.)  Cryotherapy to repair two large tears in the left retina.  This was followed by an hour’s posturing twice a day, half an hour face-down, then half an hour on my left-hand side.  All night on my left side.  This continued for a few weeks.
  • 30 June 2014 – Surgery No 2 at the Royal Surrey County Hospital, following a crazy 5am dash back to Surrey from Kent (Lucy’s Formula 1 driving skills strike again) to get back to the hospital after becoming aware that I was starting to lose vision from the top of my eye. Right vitrectomy, laser, and injection of silicone oil.  The silicone oil acts like a permanent internal splint to hold the retina in place while it heals, as opposed to the gas bubble which gradually disperses and is replaced by natural fluid.  The oil requires a further operation to have it removed at a later date, and is used in complex cases, or repeat detachments.
  • July 2014 – Posturing.  For a month.  That’s right… the WHOLE month.  I spent the WHOLE MONTH of July in my pjs.  Well, there didn’t seem much point in getting dressed.  Have you tried posturing with bra wires and the like digging in?  Well, trust me, anything which adds to the discomfort of the whole posturing experience is to be avoided. I postured for half an hour face down with my head tipped slightly forward, half an hour on my left-hand side, and then was permitted a glorious 10-minute break before starting over again in the face-down position.  For the last two weeks of July this routine was amended to 15 minutes face-down, 15 minutes on my left, and then a whole 30 minutes break!  It was quite a novelty being able to finish eating my dinner in one sitting.
  • 28 January 2015 – Surgery No 3 at Moorfields Eye Hospital, London By Autumn 2014 I’d been referred to Moorfields as a ‘tricky case’ by my consultant in Surrey. I could think of more pleasing adjectives than ‘tricky’ but figured that I’d certainly be in good hands at Moorfields.  So onwards and upwards with the third surgery: right vitrectomy, removal of oil, laser, retinectomy (cutting away part of the retina), cryotherapy, and another lot of oil back in.
  • 29 January 2015 – Posturing.  For a week.  Wehey!  Only a week!  And on my right-hand side; no face-down posturing!  I was back at work after two weeks – what a result!  🙂
  • 14 May 2015 – Surgery No 4 at Moorfields Eye Hospital, London This was planned surgery to remove the oil, but a small detachment was discovered bottom right when the oil was taken out, so this was treated: right vitrectomy, retinectomy, laser, and a short-acting gas bubble was placed.  The quote, ‘Double, double, toil and trouble; fire burn, and cauldron bubble’ took on a whole new meaning in my head at this stage.
  • 15 May 2015 – Posturing.  For a week to 10 days.  Being a glutton for punishment / a paranoid wreck / one who is ever-hopeful of clinging onto a degree of decent vision (delete as necessary), I did the whole 10 days.
  • 27 May 2015 – An early morning visit to Moorfields A&E following symptoms of increasing floaters the previous day.  The verdict from the nice A&E doctor: ‘It’s not good news I’m afraid: your retina’s detached again.’  Not quite knowing whether to scream or cry, I opted for the latter.  One good thing about eye hospitals is that there are always plenty of tissues handy.
  • 28 May 2015 – Surgery No 5 at Moorfields Eye Hospital, London Right vitrectomy, 360 degree laser, cryotherapy, retinectomy, and silicone oil back in.  ‘How do I have to posture?’, I asked the very patient surgeon once everything was complete.  ‘No posturing this time’, he replied, cheerily.  I’m not quite sure why he was so cheerful as he’d already had to deal with my pre-op inquisition and it was after 9pm at this point.  ‘No posturing?’, I repeated, incredulously, ‘Are you sure?  I’ll posture for a year if it’ll make the retina stick!’  ‘No, definitely no posturing.  Things are different now and it won’t help.  Just don’t lie on your back.’  Despite this, I still spent the next few days in my pyjamas as the prospect of getting up and dressed was too exhausting to contemplate.

How it all began

I think of it as having begun on 14 April 2014, on the first day of a short holiday to Berlin with Sarah, my old uni friend, but in fact I now know that it actually began a few days previously when I started to notice a couple of tiny very black floaters which bounced across my field of vision when looking at my computer screen at work.  As I’d always had floaters in my eyes, and had previously been told by an optician not to worry as they were perfectly normal, I put it down to stress and insomnia, making a mental note to get it checked out if necessary, upon my return from Berlin.  I try not to think about how my increasing sight loss in my right eye, as well as all the fear, pain and  frustration of the past year, could have been avoided if that optician had given me the correct advice: i.e. floaters are perfectly normal BUT if they change in any way, ALWAYS get them checked out immediately by an optician or the Eye Unit of a hospital.

On the morning of 14 April I was still noticing the new floaters, and by early afternoon when we arrived in Berlin I was aware of an odd ‘pulling’ visual effect at the left-hand side of my right eye.  This gradually worsened, by which time I was worried enough to have texted my mum to ask her to arrange an optician’s appointment for me once I returned in a few days.  In the meantime, I was still putting it down to stress and we decided to try and take my mind off it by heading out to explore Berlin, and the lure of a geocache at Checkpoint Charlie.  The desired yellow smiley face on geocaching.com was duly obtained amidst much excitement, and we then headed into the Checkpoint Charlie museum to educate ourselves.  At this point I should add a piece of practical advice for anyone with a visual impairment thinking of visiting Berlin… I’d give the Checkpoint Charlie Museum a miss if I were you.  It’s fascinating, but with literally every wall covered from floor to ceiling with reading material (I kid you not), it certainly isn’t an eye friendly experience.  I made it about a third of the way around before admitting to Sarah that I was having trouble reading things and had noticed that something was obstructing my vision from my left-hand side.  At the time, I described it as a ‘black bubble’ coming across my field of vision.  RD patients will be aware of why ‘bubble’ isn’t the best way of describing it, and in retrospect I’d describe it as the dreaded ‘curtain’, a word which will strike fear into the heart of anyone who’s had the misfortune to experience a retinal detachment.

We headed back to the hotel and Sarah ordered me off to bed before going off to seek out the wifi hotspot in the hotel to research my symptoms.  She returned shortly with the authoritative instruction perfected in her teacher-training days, ‘Get up and dressed, Emma, we need to get to the hospital’.  A few weeks later she told me she knew how worried I was by how little resistance I put up.  By this time it was about 10pm, and off we sped in a taxi to the nearest hospital.  Upon arriving, we were informed that we needed the Eye Hospital, so off we went again in taxi number two.  After various long waits and conversations along the lines of, ‘Do you think they’ve forgotten about us?’ I was seen by a very efficient German doctor who dilated my eyes, asked me a few questions, and swiftly diagnosed a detached retina in the right eye and two tears in the left.  She explained that I would need surgery within 24 hours and wasted no time in telephoning a nearby hospital and arranging for a surgeon to operate the following day.  We rapidly discussed the logistics of staying in Berlin for the surgery, but it was a no-brainer as far as I was concerned as the doctor told me that medically it would be best to stay because the macula was still attached.  Several tests and an ECG later, this advice changed as my macula detached while I was actually there.  She said that as I no longer needed surgery within a matter of hours, it would be best for me to return home and have the surgery in the UK as soon as possible.  At this point, things progressed from bad to worse as Sarah realised that her money belt, containing her passport and all her money had disappeared.  (I should allow a pause here for those who know about my previous trip to Germany many years ago in which my friend, Joanne, lost her passport and all her money to gasp incredulously.)

So… another speedy taxi through the almost silent streets of Berlin, back to the hotel to pack and book an emergency flight for myself, and we were at the airport again by 6am.  I woke my sister up by ringing from the airport at 5am UK time with with the master understatement, ‘Lu – I’m okay, but my retina’s detached.  Can you come and get me from the airport?’  I’m not entirely sure how I got back in one piece… by this time a good 50% of my right eye was covered by the dreaded black ‘curtain’, and both eyes were still dilated.  I remember thrusting my remaining euros at Sarah and telling her to get an appointment at the British Embassy to get an emergency passport issued before being walked onto the ‘plane ahead of all the other passengers.  I also remember asking a nice Australian couple if I could follow them through passport control because I couldn’t see properly, only to realise that they had to go through a different route.  I’ve never been so pleased to make out the faint blur of my sister, waiting for me in arrivals.  Neither have I ever been so silent on the subject of her Formula 1 driving, as we made it to the Royal Surrey County Hospital and settled down to a few hours’ wait in A&E.  Sadly, there isn’t enough space here to allow a full-blown rant about my initial hospital experience back on home turf, but suffice it to say that much could be learned from the German system.  My surgery was booked in for 17 April, and I signed the consent form feeling uncertain of whether to be worried or grateful about the fact that I couldn’t read a thing on it.

Note: A very kind German family discovered Sarah’s money belt in taxi number 2 and rang the emergency contact number in her passport, enabling them to return it to her at the hotel with everything intact.