Monthly Archives: October 2015

‘Money can’t buy me love’…

…So sang the Beatles (have a listen, here: https://www.youtube.com/watch?v=SMwZsFKIXa8), and unfortunately money can’t buy me a new retina either.  I did have a quick check on Amazon and eBay just incase, as apparently you can buy *anything* on there, but upon typing ‘retina’ into the search bar, I was presented with a list of items relating to the ‘Apple Macbook Pro Retina’, which clearly isn’t any help at all [tut].  However, there was one thing which money could buy me, and that was a private consultation with a surgeon specialising in complex retinal redetachments and PVR.  I therefore screwed my principles regarding the issue of private healthcare into a little ball and tossed it aside for a while, as I went ahead with booking a consultation, simply with the aim of obtaining more time to get my many questions answered.  When I first rang to enquire about a private consultation, I was told, ‘Oh yes, you have all the time you need – there’s no rush at all!’  This was a somewhat foolish thing to say to a serial questioner such as myself, and upon expressing my delight at the prospect of limitless time for gathering information I was given the far more cautious answer, ‘Well, usually it takes about half an hour, but we allow up to an hour.’  After hearing this, I abandoned my plan of turning up with a packed lunch and sleeping bag and instead set about compiling a list of questions and highlighting the most urgent ones, with the aim of obtaining as many answers as possible.

My overheated imagination had pictured the private suite of Moorfields as being terribly posh, with deep carpets, plush armchairs, and filter coffee on tap.  In reality it wasn’t really very different from the main hospital at all.  We had to press a buzzer to get in, the waiting area was smaller than that in the main hospital (but there was slightly more leg room per chair), there was a collection of magazines which my sister approved of, and a free hot drinks machine.  However, the process was far more speedy than in the NHS clinic.  I was only halfway through completing the registration form when the nurse called me for the sight test and eye drops, but he casually told me not to hurry and returned once I’d finished.  Once the dilating drops were in, I only had to wait for about the amount of time it took my sister to sample the free coffee before we were called into the consultant’s room.

He started off by asking what I hoped to gain from the appointment, which was fortunate as it gave me the opportunity to explain that it wasn’t that I was doubting anything in my treatment so far (Moorfields have been excellent), but just that I had rather a lot of questions and worries as the complexity of my case has increased and the potential treatment options seem to be diminishing.  I also explained my fear following my previous appointment when the consultant thought there may be a tear in my left retina.  He proceeded with the usual examination of both eyes, and then asked me to lie on what I think of as ‘the dreaded bed of doom’ so that he could have a look ‘using different instruments’.  It was at this point that the metal cocktail stick type implement put in an appearance again, although fortunately I couldn’t actually see it at the time.  When he warned me that I would feel some pressure, I braced myself for the pain felt previously when this had been used, but this time it wasn’t painful, just somewhat uncomfortable as I could feel my eyeball being maneuvered around.  Finally the examination was over and I stumbled back to the chair half-blinded by the bright lights and weird effects from the oil as a result of lying on my back and moving my eyes around constantly for the past what seemed like about half an hour but was probably only ten minutes.

As he scribbled notes and drew diagrams I waited with baited breath and tried not to shake whilst sending my sister secret signals which she correctly translated as, ‘don’t let me forget any of the questions!’  Once he’d finished writing, he told me with a reassuring certainty that there were no tears in my left retina and although there is lattice degeneration, that has been present since my original diagnosis and no treatment is required at present.  ‘Phhhheeeeeeeew!’, I exhaled in my head, and suppressed the urge to whoop in relief.  Next, he said that if the oil were to be removed at this stage, it was highly likely that the retina would detach again due to traction caused by PVR which has been present all along and was the cause of each redetachment.  He also explained that I do still have some abnormal blood vessels, and this is also linked to the PVR.  This was somewhat confusing, being contradictory to what I’ve been told after the last two surgeries, but it did make sense with what I’ve read on the subject.  He therefore advised following a more cautious approach which would involve two further surgeries: 1) vitrectomy, retinectomy, laser, and oil back in.  2) oil out at some point in the future.

After some further explanation, he sat back slightly in a more relaxed pose and asked, ‘Does that answer all your questions?’  My sister failed miserably to stifle her laughter, holding up the sheaf of papers containing the carefully prepared list of questions and revealed that we actually had a grand total of twenty-six questions for him.  He looked somewhat taken aback and raised an eyebrow, but did agree that it was sensible to write them down and proceeded to answer a good few more.  As the time ticked away, I tried not to gabble in speaking more and more quickly in an attempt to squeeze as much useful information as possible out of the remaining minutes of the consultation.  We managed to get most of the important ones answered, and he was certainly very patient in explaining things.  Once it was clear that inquisition time was up, we headed out and scribbled down as much as we could before we forgot exactly what he’d said.  We had mooted the possibility of taking some kind of recording device in with us, but decided against it as legally we’d have to ask permission to make a recording and we thought it probably wouldn’t go down too well.  I paid the bill, and as we headed out I reflected that although money can’t buy me love or a new retina, it had bought me a certain amount of understanding and a small portion of peace of mind…

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Random observations after dealing with RD for a year and a half

  • Dealing with RD stinks.  (Imagine standing knee-deep in a field of fresh manure next to an open sewer with a dog who’s just farted, and then someone throws a dozen rotten eggs at you… that’s the level of pungent stinkiness I’m talking about here.)
  • I feel that I could now confidently take part in an episode of Mastermind, as a candidate with the specialist subject: ‘retinal detachment and vitreo-retinal surgery’.
  • Every day, I’m hugely grateful for the sight I have.
  • Every day, I’m horribly afraid of losing any more sight.
  • It’s a darn good job I didn’t follow a career in painting restoration, which was what I really wanted to do!
  • The many pained lessons spent bashing the life out of an old typewriter as a teenager whilst learning how to touch-type were not wasted after all… hurrah for being able to close my eyes and touch-type!
  • The lack of support and understanding from certain people whilst dealing with this nightmare has been hugely upsetting.
  • Making the decision not to waste time on people who clearly don’t care has been surprisingly liberating.
  • Support has come from unexpected places at times.
  • A cup of tea does not make everything okay.  But it does help.  Particularly if it’s Teapigs.
  • St Lucy is the patron saint of the blind and those with eye trouble.  I find this somewhat ironic as my sister, whose name is Lucy, accompanies me to most of my hospital appointments.
  • If this had happened to me 100 years ago, I would almost certainly be blind by now, because there would have been no surgery available to repair the detachment in my right eye and the two tears in my left retina would have eventually led to a detachment in that eye as well.
  • I’m extremely glad I wasn’t living 100 years ago.
  • Retinal surgeons are like magicians, but even magicians can’t perform miracles…
  • When people complain about having to wear glasses it makes me want to punch them in the face.
  • I would very much like a pair of new eyes.

teapigs

“Words, words, words”…

… So said Hamlet in response to Polonius’s irritating query, “What do you read, my lord?”, but of course in true Hamlet style, there are multiple meanings beneath his ostensibly simplistic reply.  I find it quite interesting when I think about the different ways in which the experience of retinal detachment has affected the way I think about and use certain words.  On the one hand, there’s a whole new language of retinal detachment (or RD) in relation to becoming accustomed to certain medical terms.  For example: ‘macular-off’ means that the macular has detached as well (it’s pretty much as bad as it can get if you have a macular-off detachment, or ‘mac-off’ as it’s often referred to.  In case you’re wondering – yep, mine was ‘mac-off’.); ‘PVR’ is proliferative vitreoretinopathy, or what I think of as ‘bad scar tissue’; ‘cryotherapy’ is freezing treatment to essentially weld the retina back together; a ‘vitrectomy’ is the removal of the vitreous fluid or whatever has been put in to replace it, e.g. silicone oil; a ‘retinectomy’ is the procedure of cutting away part of the retina which won’t lie flat… I could go on and on…

On the other hand, many day-to-day words are used to describe certain aspects of RD and in using them in this way, a certain level of double-meaning is created and they aquire a film of either positivity or negativity.  For example, my fellow eye buddies will understand the feeling of dread conjured up immediately as soon as I mention ‘the curtain’, because that’s the word generally used to describe a detachment as it’s like a black curtain being slowly drawn across your vision.  Similarly, I can no longer hear or read the word ‘detached’ in general conversation without feeling slightly sick, for obvious reasons, so if you live in a detached house just keep that piece of information to yourself if you don’t mind.  Another classic is ‘bubble’, after having to deal with a long-acting gas bubble after my first surgery and a short-acting bubble after my fourth.  I’m somewhat frustrated that this will mar my enjoyment of the first appearance of the three witches next time I attend a performance of ‘Macbeth’.  Another word which now carries negative connotations by the truckload is ‘posture’.  Now let’s get this clear… I know I often sit with my shoulders hunched slightly forwards (a bad habit of tall people), but DON’T TELL ME I HAVE BAD POSTURE!  It brings to mind the hours and hours of lying face-down or on my side for days on end, which isn’t something I generally like to think about.  Reminding me simply to put my shoulders back, as my boss frequently does, is far more acceptable language to use.

On the positive side, I find there’s nothing more amazingly fantastically stupendously brilliant than being told that my retina is ‘flat’ or ‘attached’ or, along similar lines, my eye being described as ‘quiet’.  So these words have become associated with that glorious weightless feeling of relief when I want to skip out of the hospital and do one of those ridiculous little clicky-heels jumps in the air as I go.  [Note: it is inadvisable to indulge in this behaviour with dilated eyes.]

Since dealing with retinal detachment I’ve consciously forced myself stop using certain phrases I previously used without really thinking about them, such as ‘blimey’, which I was in the habit of using as an exclamation rather frequently.  I realised just *how* frequently when I decided I had to stop saying it.  As my Grandad used to point out to me, this actually means, ‘God blind me’.  Well clearly I had to lose this from my vocabulary immediately!  Another everyday classic is the casual, ‘See you later’, which I do still say but occasionally I feel a pang of anxiety when I think to myself, ‘But *will* I actually see you later?’.  I suppose a substitute would be ‘Catch you later’, or maybe ‘Talk to you later’.

Similarly, these days I’m very aware of the amount of times I say, ‘I see’, when I actually mean, ‘I understand’.  Along the same lines, it’s quite scary how frequently people joke about being blind when they can’t find something, or laughingly quip, ‘it’s like the blind leading the blind’ when in a situation where two people don’t have a clue what they’re actually doing.  I’m sure I used to do it myself, but these days it tends to make me wince slightly.  I’ve lost count of the number of times people have asked me what my next hospital appointment is for and explained, ‘it’s a check-up’, at which point they gleefully respond, ‘Ah, they’re keeping an eye on it, are they?’, clearly impressed by their quick-witted pun, which unfortunately I’ve heard about fifty times before.  I tend to just chuckle politely whilst inwardly rolling my eyes.  Recently, a friend caused amusement when the subject of my blog came up, by describing it as ‘a good insight’ into what I’m going through, befure realising the irony of using the word ‘insight’.  I’ll do my best not to analyse people’s choice of language too much though… after all, I don’t want to start going mad, like Hamlet did.  Hmmm… or was it really madness, after all? 😉