15/12/2022
The NHS is a funny old thing. Just when you think it’s in the final stages of its decline, it pops up and reminds you that it’s still a world class gem – to be treasured and polished. A funny thing happened the other week. Actually, several funny things. All set in a context which really isn’t funny at all.
I have a condition called amyloidosis, which is localised to my vocal cords. It sometimes makes my voice sound weak and cracked, but not enough to stop me appearing in last year’s church panto, for example, where I played Gormless the robot (to rapturous acclaim I might add). The condition is quite rare, and the medical profession is rightly intrigued by it, to the extent that they invite me, every now and again, to visit and be prodded and poked about. Then we can sit and discuss it at length; never do anything about it, just discuss it. The National Amyloidosis Centre (NAC) is a department of the Royal Free Hospital in central London, and I visit it once every three years. In the past they did quite exciting things, like injecting me with radioiodine and scanning for evidence of a spread which I sincerely hoped they would never find. But nowadays, it’s a simpler routine of medical checks: heart ultrasound, ECG, liver function, and bloods. I had toyed with the idea of not even going. Getting to central London by 8.40am on a train strike day is problematic, but I was drawn by the notion that, these days, you can’t get such a thorough system check any other way. In any case, it felt like it might be fun to have a jolly in London.
The NAC is all set up like some medical fairground. As you visit each ride a member of the team hooks you up to one or another diagnostic machine. There’s probably something wrong with me in that I quite enjoy this sort of attention. I don’t know if they have a machine to test for that. But as I made my way round the rides, frowns began to appear, and I was increasingly asked how I felt in myself. Did I feel dizzy? Breathless? In pain? “No, please don’t stand up.” I began to smell a rat when an apparently passing Consultant popped in and thought he might examine me too.
A pulse rate of 35 and a sky-high blood pressure meant that I should be feeling perfectly dreadful, though when asked I could only offer, “Never better.” The upshot was that they wheeled me down to A&E; I wasn’t allowed to walk. I could have done; it just seemed like an ordinary day to me. A cardiologist was called for, took one look at the ECG and said that I would have a pacemaker fitted – probably the next day. I suppose many might have found this to be concerning. Probably because I’m retired and don’t have to worry about when I’ll next show up for work, or maybe because I didn’t feel in the slightest unwell, I just found myself thinking, “Well, this is an unusual turn of events, and it may yet all work out to have been a mistake.” What I was worried about was that the A&E department is in the basement and there is no telephone signal at all. My wife would be expecting to pick me up at Oxford Parkway in the early evening, but I had no way of contacting her. Bizarrely, I found that incoming calls worked, and I had two lengthy conversations with people from Wantage who had some trivial local issue to deal with and wondered if I could help. After some experimentation, I found that text messages would eventually get through. Had I the wit to check the hospital’s excellent Wi-Fi signal I could have ‘phoned Ann on WhatsApp or even sent her an email. Note to self…
Up on the Cardiac Care Unit (CCU), more attempts were made to explain to me just how ill I was. During the transfer from A&E trolley to bed, I noticed that the toilet was only five paces away. “Hang on a minute, before I jump in here, I’m just popping to the loo for a pee.” When I came out, the nurse absolutely read me the Riot Act. Those five steps were five steps too many, and they certainly didn’t want me locking myself in a small room. This bed was going to be my home for the next few days, no matter how well I felt.
A CCU is a high dependency unit. Everybody is being closely monitored round the clock. Sleep is well-nigh impossible with a mattress constantly changing shape to avoid bed sores, a flashing and beeping bedside monitor screen which screeches if one of the dozen leads attached to your chest falls off, and a blood pressure monitor which tightly squeezes your upper arm automatically every thirty minutes. With lights out at 10pm we’re all ready to rock & roll again at 5am. Oliver, the charge nurse, and I are playing a game. He brings armfuls of cardboardy bottles, and I fill them with pee. It’s a race. In the morning I need more than a pee and they arrange to bring a commode to the bedside. It’s a wheelchair with a cardboardy tray fixed under the seat to collect all your droppings. This is discomforting for me; only a curtain separates me from the rest of the CCU bay and this is certain to be an embarrassing firework display with a messy ending. Surprisingly, when I stood up, I’d managed to quietly produce an almost perfect specimen, something akin to a whipped sundae. I now felt I wanted somebody else to see this. Which they probably did – momentarily.
The consultant came by at 9am, closely followed by two acolytes pushing a trolley with a computer on it. They typed up every word she uttered, while she checked their grammar. It was explained to me that my heart rhythm was all over the place, in a manner which was characteristic of ‘Total Heart Block’. A pacemaker instantly rectifies this, but they don’t fit them at The Royal Free. A journey to a specialist day surgery unit in Barnet would be necessary tomorrow. But today I would be having a thoracic MRI scan to see if the root cause was amyloid in my heart muscle. It’s either very difficult, or impossible, to have an MRI once a pacemaker has been fitted due to the huge magnets involved. The consultant asked me if I was happy to go ahead with the procedure which, of course, I was but went on to say that it seemed to me there was, in any case, no other viable option. One of the acolytes laughed nervously that a patient might express an opinion to a consultant. “I didn’t want you to die of stupidity,” explained the consultant. “It’s a threat I’ve lived with since birth,” I managed to blurt out.
Talking to the other incumbents of the CCU, I realised what a calm and orderly diagnosis mine had been. They all discovered their conditions the hard way, by collapsing in the street.
On the afternoon of day two my bed was wheeled down to MRI in preparation for the 40-minute procedure. I was amazed to learn that they only do one scan a day for inpatients and that, today, I’m the lucky one.
Part of a porter’s job is to keep everything light-hearted. They’re chirpy chappies. Mine was practicing handbrake turns with my trolley. The MRI staff were very friendly too but remarked that I was perhaps a might too chipper for somebody in my position. Any chipperness was quickly dispelled when I was inserted into the machine’s narrow tunnel. It’s claustrophobia on steroids, but that’s not the main problem. The very second you go in, your nose starts to itch. In addition, I’d been given very clear instructions that the information being sought was dependant on my adhering to very strict breathing directions. When instructed over the headphones, I was to breathe in, breather out fully, and hold for 11 seconds. Sounds simple, right? 11 real seconds lasts a very long time when everything depends on it.
Chatting with a nurse afterwards, I mentioned that I’d been asked multiple times whether I have a family history of heart disease. “Yes,” I would say, “my father dropped dead when he was 42.”
“Do you know what he died of?” they would ask.
“Yes, a coronary thrombosis.” At which point the questioner would look completely disinterested, something which was confusing the hell out of me. The nurse explained that, generally speaking, hearts have two sorts of problem. One is a plumbing issue, like my father’s; the other is an electrical imbalance, like mine. Chalk and cheese.
I’ve discovered that, in London, people don’t know what “Ticketty-boo” means. When the 5am wake-up call comes, for which you’ve been patiently waiting, somebody pops their head around the curtain and asks you how you’re feeling. I say “Ticketty-boo” and they look like they want to call the crash team – he’s hallucinating. Surely, it’s more efficient than, “As well as can be expected under the trying circumstances.”
Early on day three, two chirpy chappies wheeled me onto an ambulance and drove me through London’s rush hour to the day surgery unit in Barnet. Amusingly, the café is just inside the entrance and so my bed was pushed through a mass of people sitting to a breakfast of coffee and croissants. Now I know what a Crêpes Suzette feels like.
I had the whole morning to wait for my procedure, planned for the early afternoon so, in conversation with one of the theatre staff, I remarked that I was surprised that everything was happening so quickly. Perhaps it’s because I’m an out-of-area patient, I ventured, and they just need to get shot of me. “No,” she said, “It’s because you’re an emergency.” This was quite a sobering thought. In some senses I began to wish this cardiac arrhythmia would at least have the decency to make me feel unwell, as some sort of justification for the care everybody was taking.
Surgeons these days are obliged to explain all the worst things that can happen during the procedure. I suppose this avoids having a patient waking up and being surprised that they hadn’t been told that losing a leg was a possibility. For me, none of the risks sounded remotely likely, though I did make a mental note not to sneeze at a vital moment. And then I made the mistake of remarking, “In any case, I’m a fairly relaxed individual.” This turned out to be unwise.
When the appointed hour came, any scruples about my even standing up were overturned by a request that I walk to the operating theatre. And any feeling that I might have had that this was a walk to the gallows was overturned by my delight that the operating theatre was so modern and bright that it was redolent of 2001 A Space Odyssey. As I was climbing on to the operating table, one of the theatre staff approached me and said, “We all think that you look like Liam Neeson.” Ridiculous as this sounds, it is not entirely without precedent. Some forty years ago I was in line for a take-away pizza whilst visiting Chicago when somebody started shouting about Liam Neeson being in the queue. I began looking around, but it was my autograph they were after. In the intervening years there have been sufficient examples to demonstrate that for some people, in some lights, a fleeting glance of me reminds them of Liam Neeson. And so it was in the operating theatre. The staff were taking it in turns to mimic ‘my’ most famous film line – “I will find you, and I will kill you.” I had to tell them that I thought this was rather bleak humour for a man on an operating table.
The table has an X-ray machine mounted above it so that wires from the pacemaker can be guided through veins into their appropriate positions in my heart. To protect my head from the X-rays, a leaded cover was placed over me, obscuring any view I might have had of the proceedings. The operation was performed under local anaesthetic so whilst I felt no pain, I could sense with some clarity what was going on. The cutting of the scalpel and the opening of the wound between heart and left shoulder. The thought ran through my head, “This man is dissecting me!” “Wait a minute, how am I even able to think that?”
Somebody wondered whether I needed some sedative since I was tensing as one might in the dentist’s chair. “Why? Haven’t I got any?” I asked.
“Do you want some?” asked the surgeon, “Oh. Wait a minute, your blood pressure is telling me you do.” A few minutes later, the unfolding events were just as vivid as before, but now I didn’t care.
I didn’t even care when somebody asked what the strange thing in the X-ray was. It had too straight an edge to be a swab, and in any case a swab and instrument count revealed that everything that had gone into the wound had come out again. Any memory of what the conclusion was has now faded.
Back at The Royal Free my last night was as sleepless as ever. As the lights went off, an old lady, in another bay of the cardiac floor, began a shouted dialogue with some inner voice which only seemed to have four topics of conversation, repeated without interruption. People wondered why she couldn’t be given a shot of something to calm her down, but I guess that might have infringed her rights to free speech. Our rights to a quiet night were assuaged by the handing out of earplugs to all the other patients. This was libertarianism on steroids. And in many ways, I applauded that (quietly to myself).
At lunchtime on discharge day a lady arrived with a laptop and placed a Bluetooth transponder around my neck to make a connection with the pacemaker. Wow! I’ve always wanted to be a Bluetooth device. But the laptop reported that there was a software version error. I hoped that it was me that was the later version. She tried it again – software version error. And again a third time. I thought I was being amusing when I said, “Of course, you know what the first sign of madness is. Doing the same thing twice and expecting a different result.”
She didn’t seem to be amused and explained how busy her department was and how she’d tried to fit me into her lunch break. I suspect she thought I was impugning her competence.
Later that afternoon a larger-than-life character with a yarmulke on his head appeared with the same laptop. He seemed to want to combine a profound expertise in medical technology with his stand-up comedy routine. He warned me that I might feel a fluttering in my chest as he turned up my heart rate, which made me wonder whether he had found me and now he was going to kill me. He didn’t even smile when I asked if I would now be able to print in colour. To be fair, his jokes were another class altogether.
“We like to test these pacemakers before you leave. It’s no good coming back later to complain. Trust me, I’m a Jew, you won’t get a refund.”
“Don’t do anything I wouldn’t do. And if you do – take photographs.”
“Of course you can drink alcohol, the more the better. But just remember, those limits aren’t to be viewed as targets.”
I didn’t even mind when he forbade me from going on a holiday to Spain that I’d booked only twelve hours before falling ill.
And with that I was discharged and driven home by concerned family members to a set of grandchildren who think I really am a robot now.
All in all, it’s hats off to the NHS. They diagnosed a disease in a man who didn’t feel unwell. Who couldn’t offer any symptoms, other than a bunch of dodgy vital signs. They took care to explain how sick I was, and then fixed me with state-of-the-art technology which I was excited just to be near. And everybody I encountered was kind, friendly and gentle. They did all this in just four days.
It’s all rather humbling really.
