Category Archives: Setting the scene

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.

‘I think you should write a blog :)’…

…So declared my no-nonsense colleague, the day after informing me that it was far too early to be contemplating the idea of returning to work after my fifth lot of major eye surgery within the space of thirteen months.  ‘What exactly is a blog?  Like a diary?’, I asked her somewhat dubiously, remembering my stack of journals from earlier years, many of which I destroyed before my third round of surgery because I didn’t want people to find them and read them after my death if I failed to wake up from the anaesthetic.  ‘Yeah!’, she replied cheerily, ‘A blog online of what happened to you and how it changed your life!  You can also write about charities and spread awareness of retinal detachment.  It will keep you busy and give you practise in using the computer.’  Such practical advice, coupled with the knowledge that diary-writing proved to be a cathartic experience for me in years gone by, and a not-so-little voice inside my head which tends to rant about retinal detachment related issues has thus resulted in my decision to give it a bash and see what happens.  If all else fails, surely it’s easier to delete a blog than to make a bonfire in the garden of a rather hefty pile of thick hard-backed diaries.