Cataract assessment: take three

After my decidedly nightmarish and farcical cataract assessment appointment at Moorfields in May and the stress that followed due to Moorfields noting down the wrong eye in my post-appointment letter, plus the necessity for herculean efforts to obtain a tiny bottle of prescription eye drops from my GP, I was looking forward to my next appointment on 4 June like a hole in the head. I spent a considerable portion of the interim period gloomily contemplating my fading visual future, and trying to test the vision in my bad eye in an effort to figure out whether or not the eye drops were working. I had absolutely no idea, but this did little to stop my obsessive efforts to determine whether picture frames were straighter than they had been the previous day, or using my Excel document of new course approvals at work as a makeshift Amsler grid. Anyone observing me staring intently at my computer screen might be forgiven for making the entirely inaccurate assumption that I was enthusiastically engrossed in my day job. The only things I was really focused on were whether there would be another train strike on the day of my appointment; whether the consultant would be present; and whether or not it would be postponed at the last minute.

A fortnight before 4 June, I was able to breathe a sigh of relief: no further train strikes had been announced. (Trade unions in the UK are legally obliged to give two weeks’ notice of any industrial action.) The day before my appointment, I followed the advice given to ring the hospital to check that the consultant would be there. After some time spent riding the not-so-merry-go-round of Moorfields’ telephone system once again, I was finally given the information that yes, the consultant would be there. Phew. I assumed from the cheery, “We’ll see you tomorrow!” that they weren’t planning to postpone me at the last minute, so that elicited another sigh of relief. It appeared that the appointment was ON. Now all I needed to worry about was getting to the railway station the next morning and then the small matter of what hideous news might be imparted to me this time…

Standing on the station platform the next morning, teeth chattering together nervously in the warm sunshine, I was surprised to hear my name being called. It was one of my old colleagues who I’d worked with before the really spectacular mismanagement and endless rounds of restructures had begun to kick in at my workplace. She’d managed to make her escape a few years back, and certainly looked all the better for having done so! We chatted for a while about the good old days, before moving onto politics and exchanging podcast recommendations. Listening to her friendly Irish tones made me feel slightly calmer and the train journey seemed to pass relatively quickly as a result.

My sister met me at Moorfields, and after a quick sarnie and scan of my ever-expanding list of questions, we headed into the clinic. It was packed. So packed, that the receptionist asked us to wait at the entrance while she went to scope out a couple of seats before leading us into the depths of the labyrinth of tiny rooms. We settled down for another long wait and weren’t disappointed in that regard. However, this time it really didn’t matter as there were no train strikes.

After a while, I had another set of OCT scans, and following a further wait was called for the visual acuity and pressure checks. My heart sank when, upon holding the occluder up to cover my good eye, I couldn’t even see any of the letters on the screen at all with my bad eye. Off went the nurse to fetch a piece of paper bearing a giant letter, which I was able to read, before she returned to the screen which had been playing up due to an issue with the remote control. Upon completing the rest with my good eye I asked her, with some trepidation, what the numbers were. “6/38 in the right and 6/7.5 in the left”, she informed me. I gawped at her in disbelief. “6/38 in the right?”, I asked, “Are you sure?” “Yes, yes!”, she nodded. “But it was 6/75 at my appointment last month!”, I said, feeling utterly baffled. “Yes – it’s improved!”, she said, nodding again as she assured me that she’d checked the previous reading. “But how can that be?”, I asked, before it suddenly occurred to me: “Ooooh, the drops! I’ve been on drops for fluid on the macula! Might they be working?”, I asked hopefully. She told me that the doctor would talk to me, but assured me that the visual acuity was definitely better, even suggesting that I walk right up to the screen to check the little numbers beside the letters and see for myself. Next came the eye pressure check, which was thankfully fine, followed by the eye-watering sting of dilation drops. I returned to my seat in the overflow area feeling ever so slightly more hopeful.

More waiting ensued, but I couldn’t concentrate on a game of “I Spy” and my vision was rapidly blurring as a result of the drops. There was a debate about whether or not I needed more measurement scans (I didn’t), and then I was eventually called in to see an ophthalmologist. There was also a medical student sitting in to observe. It’s actually quite good when this happens, as it often means that there are additional discussions or explanations for the benefit of the student, which I can learn from.

Thankfully, the ophthalmologist was really good, and we had quite a detailed discussion about the potential pros and cons of cataract surgery, timings, the dreaded potential polar cataract, and the fluid in my bad eye. She had a look at my eyes and then went off to fetch the consultant, who was also really good and pretty much confirmed what she’d already said plus answering some more of my many questions. Basically, the ophthalmologist confirmed that the fluid is macular edema and explained that the likely cause was an epiretinal membrane, causing some swelling and traction. (I still don’t entirely understand this, but she wasn’t worried about it, which made me feel slightly better.) She said the fluid was still there, but had improved due to the drops. They both said that they couldn’t categorically confirm whether or not one of the cataracts is polar, but reassured me that when the time comes for surgery, they’ll make provisions in case it is. That old chestnut of assume the worst but hope for the best. In terms of timing of cataract surgery, I explained that I don’t want to jump the gun and go for it too soon, for fear of complications. Although my life is currently quite negatively affected by the cataracts, I’m acutely aware that if anything goes wrong it could be so, so much worse. This terrifies me. However, equally, I don’t want to risk waiting until the cataracts have got so dense that it would make the surgery more difficult and potentially risk a poorer visual outcome.

This time, I received a relatively straight answer to that question. The consultant said that in terms of density, he’d estimate that it would take one to two years before it would start to make surgery more tricky, but in terms of quality of life, it would be less than this before I’d need surgery. He also said he wouldn’t want to leave it up to the wire of two years, as there was plenty of cataract to be getting on with. Gulp. I’d been hoping that even if I have to give up driving, the density wouldn’t pose a problem in terms of doing the actual surgery for a good few years yet, so this came as quite a blow. But at least he gave me a straight answer, for which I was grateful.

The consultant headed back out into the packed clinic and the other ophthalmologist finished up with instructions about continuing the drops in my right eye. We thanked her profusely for all her time and patience in answering my questions, and she made a comment about knowing I’d be anxious after having read my notes and all the back and forth after the previous appointment, so lord knows what’s on record in my file after all that farce! She finished by telling us to go and relax, and have a croissant…

“How does she know that my post-appointment treat / condolence comfort food is an almond croissant?!”, I muttered to my sister as we made our way to Waterloo station. “What did you make of that appointment, then?”, I asked, through a mouthful of almond croissant as we sat on the platform to wait for the train, with two steaming cups of tea at our feet. “Well”, she said, “polar opposite to the last one, wasn’t it?!”

Cataract assessment: take two

After being informed by an exceedingly grumpy woman on the appointments ‘phone line at Moorfields Eye Hospital that train strikes were not a reason to postpone an appointment (you can read about this in my previous post, “Train strikes“), I spent the next couple of weeks hoping that she was right and the strikes would be called off. They weren’t. Of course they weren’t. However, there was a severely limited strike timetable in place, and it appeared that I would be able to get into London after all. Phew. Whether I’d be able to get home again after the appointment was another matter, as the limited timetable meant that trains stopped running early in the evening. As my appointment was early afternoon, I was hopeful that this would be fine, and the only thing we’d have to worry about was preventing ourselves from being crushed in the inevitable stampede to exit the capital at the end of the day.

Having purchased our tickets, we were standing in the unseasonably warm Spring sunshine on the station platform when my mobile started to ring. My sister and I eyed one another in trepidation. “That had better not be Moorfields cancelling my appointment NOW!”, I muttered darkly, as I fished the ‘phone out of my bag. It was Moorfields. They’d rung to check that I would be attending my appointment as there was a note on my record to say that I’d contacted them to say I might not be able to get there due to the train strikes. “Yes, yes, I’m literally just waiting for the train now”, I responded, before enquiring, almost as an afterthought, “Can I just double-check that the consultant will be there?”. After all, it’s not just us patients who are affected by the train strikes – quite often medical staff are unable to get in either. [Note to Aslef: you might have more success in your campaign of greed if you try doing something to hurt the government, instead of anxious patients and medical staff. You know – those people who actually have it within their power to do something about your pay and working conditions. Just a thought! Rolls eyes.] “No, the consultant won’t be in, I’m afraid – he’s booked last minute annual leave.” I spluttered. I closed my eyes briefly. I opened them again. I took a deep breath. “The consultant won’t be there?”, I asked, hoping I’d misheard. “No”, she confirmed. I calmly explained that I really needed to see the consultant, that there was a note on my record stating that I needed to see the consultant, and that if he wasn’t going to be there it was likely that I’d not only be wasting my time (and money, after having bought the train tickets), but I’d be wasting their time as well. She replied that there was a team of doctors who were all highly qualified, and she was sure it wouldn’t be a wasted journey, and so I should still attend the appointment. I looked at my sister who was hopping about on the platform in frustration. “Okay”, I said, “The train’s actually about to get here in the next five minutes so I’ll come in as you’re advising, but please could I ask if I can be seen quickly, especially if the consultant’s not there, as I need to be back before the last train?” “What time’s your last train?”, she asked. “6pm”, I confirmed. “Oh yes, that’ll be fine then. If you’re able to get here a bit early, come straight in and we can probably see you earlier.” And that was that. We got on the train and off we went, muttering expletives as we sped towards the city.

We arrived in the clinic a whole hour before my appointment. Fearing that I’d be turned away, as patients are always told in appointment letters to arrive no more than fifteen minutes early, I explained the reason. It later transpired that the receptionist I checked in with was the same one who had rung me earlier. We settled down in the half empty waiting room and I was encouraged to be called by the nurse for the acuity and pressure checks followed by dilation drops within just half an hour. There was then another reasonable wait before I was called through for OCT scans. The guy who did them told me I’d have further scans to measure my eye next, and I went and sat down again feeling hopeful that at least the appointment shouldn’t take too long.

The small waiting room was crammed full by this point. Patients were coming in, then being called for tests and scans before sitting down again, then being taken in for the consultation. Basically, the usual conveyor belt of your average eye clinic. We waited patiently. After a while, we started to notice that some people who had come in after me appeared to be leaving before me. Then all of a sudden, a nurse appeared from one of the narrow corridors, carrying a disposable bowl in her hand. She sauntered over to the disabled toilet beside the waiting room, opened the door wide, tipped the contents of the bowl down the toilet and flushed it, before dumping the bowl in a bin and disappearing into the depths of the corridor again. My sister and I looked at each other. “Someone must be ill”, I observed, redundantly.

Then, a whole stream of staff (presumably from the main hospital) appeared, quickly walking through the waiting room to one of the rooms beyond. A couple of them were wheeling through some sort of machine, and then several security staff rocked up. One stood at the back of the waiting room at the entrance to one of the corridors leading off it as if he was guarding it, and the other one disappeared with the other staff. By this point, those of us sitting in the waiting room were shuffling about and looking at one another slightly nervously, as something was clearly going on but we had no idea what. Meanwhile, time was ticking on, and we were starting to worry that we really might actually miss our train back home.

After a further wait of what seemed like forever but was probably only about 45 minutes or so, a nurse appeared at the front of the waiting room. She announced that there had been a medical emergency. My sister and I both admitted to one another afterwards that we thought she was going to tell us all that we had to go home. But she didn’t. Instead, she simply said that she was sorry that all appointments would now run half an hour late.

Now obviously, I have sympathy for whoever was caught up in whatever the medical emergency was as well as the staff dealing with it. However, we did need to know what time I’d be seen, and saying all appointments would run half an hour late was utterly meaningless in an eye clinic as nobody ever gets seen at the actual time of their appointment. By this point it was already over two hours past my appointment time and we’d arrived an hour early! If there hadn’t been train strikes, we would have just continued to wait patiently, as we usually do. But as it was, we reluctantly adopted the guise of Impatient Patient and asked for clarification. “You’ll be getting your other scans shortly and you should be out of here by 5pm”, we were told. Hmm. I didn’t like that word, “should”.

However, all of a sudden things appeared to start moving at last when four of us were called through for our scans. We were led down the corridor and sat down just around the corner, where we waited once again. I can’t help feeling that this was some kind of psychological tactic to make us feel as if things were moving along and we were being dealt with. However, clearly we weren’t being dealt with at all, as it then transpired from overhearing various conversations that one of the scanners had broken. I overheard a nurse telling someone: “Send that patient through, but she’s only had one scan so don’t let her go until she’s had the other one!”. It was completely and utterly chaotic. At this point, my sister said, “This is mad – you’re not even going to get to see the consultant and now it looks as if we might really miss that last train; shall we just go?” I should add here that it wasn’t just the inconvenience of missing the last train, it was the potential additional cost of finding another way to get home (or needing to stay the night in London) if we did. Maybe we should have just booked in at the Ritz and sent the invoice to Aslef.

I did what does not come naturally to me and said to one of the nurses, firmly but politely, “Look, I don’t mean to be difficult but we really need to leave here by 5pm.” I was hurried to a scanner. “Finally!”, I thought. I shouldn’t have had that thought. The guy operating the scanner seemed unsure as to what he was doing and which eye he even needed to scan, until eventually the nurse took over. Then it was back to the waiting room again, although we were told to sit at the front (you see – that psychological tactic was in play once more).

After about ten minutes I was called into the consulting room by a lady in a blue and white stripy shirt. Almost before she started talking, I cut in with, “I’m sorry, I don’t mean to be rude, but I was supposed to be seeing the consultant today so can I just ask who you are – are you one of the doctors?” “I’m an optometrist”, she said. I think my sister and I may have actually groaned audibly at this. Regular readers of my blog will probably remember the very odd experience I had with an optometrist in cataract assessment: take one. I should clarify here that clearly I have nothing against optometrists. Good optometrists are amazing. But they’re not eye surgeons, and they don’t have the same experience as consultants. I explained briefly why I needed to see the consultant, and she seemed to understand where I was coming from. I decided to at least get what I could out of the appointment, and asked her if she’d be able to confirm or deny whether one of my cataracts was in fact polar. She said she could do that, and began a slit-lamp examination.

At that point, she suddenly said that she could hear one of the doctors in the corridor and so went out to fetch him. He examined my eyes too, and said that he didn’t think it was a polar cataract. (Again, I’m not massively keen on the wording there… “I don’t think it is” is very different from “it’s not”.) He proceeded to breezily inform me that even if I don’t have a polar cataract, it’s still possible for the lens capsule to rupture, but not to worry as it’s still possible to get a good visual outcome even with a ruptured capsule! (“Yeh, cheers for that, that makes me feel so much better…”, I thought to myself.) I told him that I knew this, but that my understanding was that with a polar cataract, rupture of the lens capsule is an expected and inevitable part of the surgery, rather than a complication. He nodded, before talking very quickly about things such as “anterior vitrectomy”, “danger of the vitreous coming forward”, “different maneuvers during surgery to minimise risk of rupture of the lens capsule”, “taking the nucleus out first” (I still don’t know what the nucleus is), and “alternative placement of the lens should the capsule rupture”. It was impossible to take it all in as everything was so rushed and we were so stressed.

Meanwhile, the optometrist had been looking at my OCT scans on the computer screen, and suddenly made a comment about an area of fluid behind my right eye. They asked me if I knew about this. “No-one’s ever said anything about fluid”, I told them, as my heart suddenly threatened to burst through my chest and my hands went clammy. “I have experienced a deterioration in vision in my right eye in the past few months, but in my VR appointment in March they said this was due to PCO – could it be this fluid, then?” The doctor said the deterioration in vision would be the PCO and not the fluid. I asked if they were sure, telling them that it has seemed to happen very quickly. “Yes, PCO can do that”, he said. “But what’s this fluid all about then? What do I need to do now?”, I asked in a panic. He said it was nothing to worry about and it might be due to the oil in my eye, but that I’d need some drops. I immediately assumed that he was going to prescribe steroid drops, which increase my eye pressure (not a good thing, particularly when you’ve got oil in your eye). He explained that the drops would be non-steroidal anti-inflammatory drops, which wouldn’t increase my eye pressure.

They were just about to sort out the prescription, when my sister piped up with, “Do we have to get that from the pharmacy at Moorfields?” “Yes”, we were told. “Can I not just take the prescription and get it at another pharmacy?”, I asked, explaining that we were in danger of missing our last train home. It transpired that there was a very simple solution: they would email my GP practice and ask them to prescribe the drops so that we didn’t have to wait. He said it wasn’t urgent that I obtain the drops immediately, and again reiterated that the fluid wasn’t something to worry about. I was told that an appointment would be booked for me in 4-6 weeks to see the consultant (!), and the fluid could be checked again then. So off we went, in a jumble of stress, and hot-footed it to Waterloo where we managed to cram onto the penultimate train home. (It appeared that one additional train had been laid on, since we had last checked.)

[To be continued in a further blog post… brace yourself, dear Reader]