Seeing clearly – part 1

By the morning of my eye operation I was so excited by the prospect of being able to see again I practically skipped into the hospital. No – that’s not true.  But I was desperate to be able to function again as a seeing person, absolutely desperate.  If they had told me the surgeon was ill and his dog was going to be operating instead I would have agreed gladly.

And I couldn’t skip into the hospital because a) it was bitterly cold and icy underfoot so not safe for skipping and b) we parked outside the wrong part of the hospital and had to power walk for over 20 minutes to get to the right part, arriving breathless and freezing.

Apart from the initial funny of the nurses trying to stop me going in, convinced I was confused and in the wrong department, it was all very straightforward. I had already had a few experiences of what it’s like when you have an “early onset” condition.  Medical staff are confused by your being there at all and the other patients regard you with a deep suspicion as you are clearly not like them and therefore “faking” in some way.

High-backed chairs were arranged around a room the size of a large sitting room, each with a lower backed chair next to it for your companion. I was probably the youngest person in the room by 30 years (not counting the medical staff) and the majority of people sat in silence, a few chatted a little to each other.  We soon realised it was something of a conveyor belt as a nurse came in to check your details, do your basic health checks and talk you through the procedure.  Then I had a brief chat with the surgeon and then we waited.  And waited. And waited.  After 3 hours of watching people go out to theatre and come back I realised that I was going to be the final person to be seen.  Three albums on the iPod later and many conversations with the MN, it was finally my turn.

I walked into the anaesthesia room. I was so full of excitement and anticipation.  But I think it was in there that reality hit and the wheels of excitement came off a bit.  You know that thing where they say “you’ll feel a little scratch”?  They lie.  You feel a needle being inserted into the back of your hand.  You start to feel anxious and a bit dopey and a bit sick.  Then they started putting special drops into my eye.  They had to use a lot of drops because it wasn’t working properly.  Apparently I have “enlarged tear ducts” (well, they have had a lot of practice) so the anaesthesia for my eye kept going down my throat and into my stomach.  They tried a double dose but in the end had to settle on a double dose x 2.  It really wasn’t that great.

Then they wheel you through to surgery and by now I was in that state where you think you’re normal, but in fact you’re high as a kite.  I’m not going to tell you about the hour I spent in surgery because so far anyone I’ve told begs me to stop, I’m making them feel ill.  All I will say is that having two surgeons in the back of your eye while you’re awake is not great.  I had to dig very deep to get through it, as did they.

In the week leading up to the operation almost everyone told me about someone they knew (or their auntie knew, or someone in their road knew) who had gone through a similar operation and how “it was just nothing” and “they could see brilliantly afterwards”.

This is my message to all of them and to you, in case you’re ever tempted to give similar advice.

It really, really wasn’t nothing. It was an hour long operation inside your eye while you’re awake.  It was pretty bloody awful and immediately afterwards I could see nothing.  I was ill for the rest of the day and everyone who doesn’t get on with anaesthesia and so throws up mightily after their operation will know the total misery I’m talking about.  Plus I could see less than I could before I had the op.

Four days after the operation my sight started to clear and today (8 days after) is the first day that I’ve felt pretty much normal. I have a regime of meds and eye drops to follow for the next few weeks and I have an eye guard (in a particularly flattering shade of NHS plastic) to wear to reduce the risk of getting anything in my eye.  I’m very aware that I now have a permanent implant in my eye and that seems plain weird.  I am the bionic woman, only a size 16.

I will see the surgeon again on 10 February and we’ll set the date for my next operation. I think the next one will be more stressful, because now I know what I’m in for.  However, there’s a very strong chance that by the start of summer I will be seeing clearly, out of both eyes, for the first time in years and I could have many more years of sight before I need more operations.  I am so lucky.  Only a few years ago this operation didn’t even exist and now I can have hours of painstaking, skilled eye surgery to give me back my sight for free.

And for that, NHS, I will be eternally grateful.

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2016 – another year

2016 began under a cloud. Or perhaps I should say, in a fog.

Just after Christmas I got up and found I could no longer see across the room. I couldn’t read the clock, couldn’t read the paper or a book and I couldn’t read my emails.  The faces of my family had become pale featureless blobs.  A fog had descended around me.

I felt vulnerable and scared. The pressure of hiding how I felt from my family and trying to manage the most simple of day to day tasks was exhausting.  I didn’t feel like me anymore and I didn’t much like this new version.  I phoned the hospital and my operation date was brought forward to 16 January.

There could hardly have been a worse time for this with the Southern Health scandal continuing to break around me. I could only read emails and tweets with the greatest difficulty and the concentration needed for this task was immensely tiring and seemed to make my sight worse.  It felt as if the rest of the world continued to fight for justice for our precious young people, while I was just standing on the side-lines, wearing dark glasses (quite literally) and unable to contribute.

I was afraid that people would think I had just stopped caring. I wrote a short tweet, explaining that my sight had become worse and so I was taking some time away from tweeting and blogging.  I had some very nice supportive replies, wishing me well in with the operation and I was grateful for these, but I still felt cut off from the fight and alone in a very foggy place.  The end of 2015 slid away without me really even noticing.

The first time it happened was the night of New Year’s Day.

I was woken in the middle of the night. Nico was calling me.  I lay very still and forced myself not to jump up and run next door to his room, as I have done a thousand times.  I refused to go.  I refused to put myself through that torture.  I knew that I would fling the door open to find a silent room and an empty bed.  I had done it too many times before and I wouldn’t let myself do it again.  I lay there with my heart thumping until I went back to sleep.

A couple of hours later it happened again. Nico shouted to me and I woke with a jump.  I lay there, again refusing to go, refusing to let myself buy into the fantasy that I would somehow find him there.  The next day was hard.  I felt under the shadow of what had happened in the night all day.  I told no-one what had happened.  I think part of me was scared they’d say that they had heard it too.

My daughter was staying with us over the New Year. The MN was still on holiday from work and using the time to see friends and let his hair down a little.  Looking back, I can see that having my daughter there was a god-send.  Someone to talk to, laugh with and there was also some fairly hilarious nail painting.

I went to bed pretty tired that night but in the middle of the night I woke with a jump. Nico was calling me.  I could hardly believe it was happening again.  I would not run to his room because I realised I was afraid that I would find him there.  I was afraid that somehow I would open that “low door in the wall” and cross over into a separate reality.  Eventually I went back to sleep but it happened one more time that night and I said out loud “No, I can’t come”, but saying those words made me shake and weep.

The next day I was alone for most of the day. I wanted to tell someone what was happening at night, but there was no-one to tell.  At least no-one who I felt would understand and yet not be upset.  I didn’t want to take my feelings and this story and then force someone else who loved him to know about it, talk about it and have to feel this way too.

Night three. It happened again. This time I kept myself awake for the rest of the night, waiting to see what would happen.  I don’t know which thought frightened me more; the thought of not finding him there or the thought of finding him there.

By night four I didn’t want to go to bed. I stayed up till almost 3.00pm, hoping to trick whatever was happening. It didn’t work and Nico called me in the cold grey dawn.  It was driving me to the edge.

By night five I was going to bed telling myself it wasn’t going to happen that night. It did.  By night six I realised that I wanted it to.  I wanted to hear his voice.  I wanted to answer him.  I wanted to feel that link between us.

On night seven I was woken out of a deep sleep by Nico calling out. I woke up instantly, completely clear headed and finally I knew why he was calling me.  He was telling me he needed me to keep going – that there was still so much more to be uncovered in our fight for justice.  He reminded me that I wasn’t just fighting for me – I was fighting for him and he wanted everyone to know what had happened.  He was telling me to get back out there and keep on fighting.  So I promised him I would.

The next day Beverley Dawkins called me to tell me that some interesting information had been brought to her attention. Using the Freedom of Information act, paperwork between Ridgeway Partnership and Southern Health specifically talking about Nico’s death had been found and read.  It opened up a whole new area which we hadn’t even known about before.  I was instantly back in the fight.

Nico hasn’t called to me since – I hope he hasn’t needed to and a few days later I had my first eye operation.

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