The other day, my no-nonsense colleague (that’s right, the same one that suggested I start writing a blog, at: https://rdramblings.wordpress.com/2015/06/14/hello-world/) said she thought my posts were a bit angry. This was just after I’d written the one about the consultant digging around in my eyeball with a pair of tweezers, trying to fish out a stitch (see https://rdramblings.wordpress.com/ for a further description of a particularly unenjoyable ten minutes of my life). ‘Angry?’, I repeated incredulously, steam quite possibly escaping in a fine stream from each of my ears. ‘Wouldn’t you be feeling a bit angry if someone went poking around in your eye?!’ I might come back to anger issues at a later date, as this particular emotion certainly has a place in the RD world, as many of my eye buddies will verify. However, in the meantime, I thought I’d attempt to pacify my colleague (who is capable of portraying a scarily angry side of herself at times, I might add) with a cheerful and positive post about all the wonderfully kind people I’ve met during my terrifying RD journey.
Well first of all, there was Taxi Driver Number Two in Berlin (see: https://rdramblings.wordpress.com/2015/06/15/how-it-all-began/ for further explanation), who took my friend and I to the eye hospital, realised we didn’t know where on earth we were going in the middle of the night and followed us into the building to lead us through what seemed like a maze of corridors and then spoke to someone on the internal ‘phone system to let them know we were waiting. We would probably have been wandering around that hospital for hours if he hadn’t taken pity on us, and we certainly wouldn’t have realised about the odd ‘phone system. Next on the list would have to be the patient in the bed next to me after my first surgery who told me that she had a friend who had a retinal detachment and texted him to ask him questions about how to posture, as I had been given very little information at that point and was feeling extremely confused about it all. Then there was another patient on the ward after surgery number two who came to my aid after I managed to miss my cup completely and pour water all over the trolley and the floor. (This wasn’t just me being clumsy – my eye was covered with a pad. Try getting a jug of water and pouring it into a cup with one eye shut, and you’ll realise that your depth perception is affected).
Now everyone knows that hospital appointments = waiting. If you’re waiting a long time and have had your eyes dilated there isn’t much you can actually do to occupy yourself, other than talk to people. I’ve chatted to all kinds of different people who have helped while away the hours, from the old lady who heaped praise on the surgeon whilst telling me all about her two detachments before kindly wishing me ‘good luck, dear’, to the lady who sat and told me all about her imminent move to Devon and showed me pictures of her cats (this was just before the dilation drops), to the little boy who was full of excitement about the recent addition to his family in the shape of a rescue dog. Conversations seem to stike up in other places too, like in the loo attempting to put eye drops in when one lady came in and ended up telling me all about a tear in her retina which had been repaired twenty years ago and was still okay. I can’t actually remember why she was there that day, but it was very encouraging that her repair was still holding firm. We were kept amused one hot afternoon by a man with a guide dog who started telling us a funny story, but then was called into his appointment and so didn’t get the chance to finish it. I sometimes wonder what the ending was. Then waiting for a taxi one day not long after surgery, my sister and I started chatting to a very animated young woman who told us all about her operations and what she’d been doing in her recuperation periods, and how she felt about getting back to work. I tuned out a bit by the time she’d got onto the subject of daytime television, but my sister was thoroughly engrossed so I just sat there chortling away quietly. All these little chats help the time to pass more quickly, and the ‘good lucks’ and ‘nice talking to yous’ with which we part bring a small amount of positivity into the situation.
One thing which has been an absolute blessing in terms of support and encouragement has been the RD Facebook support group page, which I found whilst hunting for information online. After having the first lot of silicone oil inserted into my eye in June 2014, I read a comment on the site from someone else in the UK who had oil in his eye and so posted a comment back to ask some questions. He responded to say he’d be happy to chat and then sent me a message with his ‘phone number and the message, ‘bell me if you like!’. ‘Yikes’, I thought, in the typical fashion of people who are much better at expressing themselves in writing than they are verbally and who frequently come to a grinding and embarrassing nervous halt when talking to new people. ‘Talk? On the ‘phone? To a complete stranger?’ I spent a good few minutes staring at the ‘phone in undecided anxiety, before paying attention to the little voice inside my head which whispered, ‘But he’s the only person you’ve come across who has oil in his eye… you could discover the answers to all your questions!’ So I took a deep breath and picked up the ‘phone. I needn’t have worried – he did most of the talking, telling me about how diabetic retinopathy had led to a detachment in one eye which wasn’t fixed by surgery with a gas bubble so then he had silicone oil inserted. Later he also had a detachment in his other eye, but thankfully the gas bubble worked on that and all went well until he experienced a bleed in that eye about the time of my fifth surgery. Since that first conversation we keep in touch fairly regularly; we always talk before and after appointments and operations and occasionally ring each other in a panic when something weird is happening in our eyes. It’s helpful to talk to someone who’s going through similar experiences and who understands first-hand what it can be like.
In similar circumstances, via a post on the RD Facebook support group site in which I asked if anyone could recommend a vitreo-retinal surgeon specialising in complex cases of redetachments as i was thinking about getting a private consultation, I ended up speaking to another Moorfields patient. She had a macular hole operation but is currently under the same consultant I saw when I went in as an emergency. It was hugely helpful to compare notes about Moorfields and hear about her experience, although also sad to hear what a huge impact it’s had on her life. We also realised that she’ll be going in for her cataract operation just a couple of days after my next check-up appointment. Shame it’s not the same day really – we could have met up in person! (I’m getting braver now!)
As a result of the same post asking for recommendations, I received a message from a fellow RD patient and artist in the US, asking me if there was any chance that I could contact a surgeon over there for a second opinion. She told me that her neighbour was a retinal surgeon and she would be happy to ask him to review my case, adding that I was welcome to stay at her home and assuring me that she was serious about this suggestion. Coming at a time when I was feeling increasingly desperate, I felt overwhelmed by such a kind offer, particularly coming from someone who doesn’t really know me at all.
There are many more examples of support and encouragement from other RD patients via the support group. An eye buddy in the Netherlands who had her oil removed a couple of months before mine was due to come out patiently answered all my questions about what the surgery was like under local, what she could see immediately afterwards, how her vision changed over the next few days, what was normal and what wasn’t… Then, when I put up a panicked post about seeing some odd floaters a few days after my oil had been removed, she sent me a message in which she went into great detail describing the different floaters she saw after her oil removal, and suggesting various possible explanations rather than the much-dreaded re-detachment. She sounded almost as gutted as me when I messaged her with the dreaded news that it had in fact re-detached yet again. Another source of comfort has been an eye buddy in Ireland, who seems to worry almost as much, if not more, than I do. She too had oil in her eye and experienced some odd symptoms and was told that her retina was re-detaching and would need more surgery. Upon going in for the operation, it was found that the retina was actually attached, so she had 360 degree laser surgery and her oil was removed. So far her retina has remained flat, and long may it continue!
I’m hugely grateful to the many people who have encouraged me along the way, many of whom won’t have even realised that they’ve helped. And to all my fellow eye buddies on the FB support group page: thanks, guys – you’re the best! 😀