I described the first part of my Magical Mystery Tour earlier this year (here). ’The time has come’, as the Walrus might have said, ‘to talk of many things’. Time now for an update on how my journey is evolving; I would say that it’s not so much Magical as very Mystery. Part 1 was written before some more strange detours, though published afterwards.
Basically, the oul boiler sprang some sort of leak and was losing pressure, so the loco had to be shunted off to The Works for fettling. Fettling involves the horny-handed and bodging in an attempt to turn a sow’s ear into a silk purse. As the fettling progressed, more and more problems emerged, and what might have been a simple job turned into a major renovation; or really an attempt at a renovation, though not a renewal and certainly not a restoration. This part of the journey was like going into a chamber of horrors, as if the train were on the sort of ride you find in amusement parks and on piers; so much was faulty that you could think the whole engine had been jerry-built. (It had been.)
We finished Part 1 with me having a shot of radiation to my left shoulder; this has certainly sorted the pain there — it’s not returned. However, over the next few days, I became increasingly breathless, so much so that I was taken to the local A&E. This time scale might be significant.
The A&E has had yet another makeover since my previous visit a year before. After checking in, we waited along with a bunch of other people. I was tested for Covid, something I find really unpleasant. And then it was my turn for the nursing triage. My temperature, pulse, and blood pressure seemed to be fine, but my oxygen sats (saturation) were very clearly not fine. I was promptly whisked off to resus (resuscitation area) and plonked onto a trolley. I was connected to an ECG machine, given oxygen by mask, and had a chest x-ray. Various medics looked and listened to me, and made grave noises, though as they were masked and visored up I couldn’t make out what they were saying most of the time — probably just as well. I remembered the resus from my time working at the other end of the scalpel; I had never seen it so rammed with patients before.
My memory of what happened over the next twelve days is a bit vague and uncertain, so please bear with me. I can remember the main points, but not all of the detail of exactly what was done and when. Some things do stand out very prominently, though. I was shunted around a few times, and I’m not so sure what happened and when exactly it happened.
After a few hours, I was taken to what looked like a large warehouse, rather dimly lit and without windows. This is apparently red-resus, a sort overflow area; it was almost empty when I arrived, but soon filled up. There was a sign over the entrance, something to the effect that decisions were made here, a bit like Caesar’s thumbs up or down in the Colosseum; I rather think it should have read, Abandon hope all ye who enter here.
And then the nebs started.
Nebs are nebulised medicines, given as an aerosol connected to the oxygen tubing and the mask. I was getting Ventolin (salbutamol), a powerful bronchodilator. I couldn’t hear it, but I had marked wheezing when I was breathing, a sign that the airway tubes were far too narrow, and the nebs were to open them up. Now I know how a grampus feels. Alas, I took against Ventolin, as many people do when it’s given this way; it made me feel very jittery in a very unpleasant way. It was bad enough that I asked if it could be changed to something else; I don’t think this happened. I also got intravenous antibiotics in case there was infection present. Rather oddly, I was never asked for a specimen of sputum; not that it mattered, for I didn’t have any.
I was being treated as if I had COPD, chronic obstructive pulmonary disease, what we used to call bronchitis and emphysema, a bad chest. Quite how I rather suddenly seemed to have developed COPD remains a mystery, at least a mystery to me.
An alternative, if rather improbable explanation is this; the radiotherapy I had to my left shoulder blade inevitably means that the nearby lung gets some radiation as well. I could have developed a sort of ‘allergic’ reaction to this which involved all of both lungs; this would fit with the ten-day interval between the radiation and the onset of symptoms. This sounds more like new age pseudo-babble than anything else, but I guess it’s possible. Another part of the mystery — and there’s more to come. Physicians gave me the once over every day; mostly, they were strong, silent types, though one ordered ‘more physiotherapy’. This was strange as I hadn’t had any physiotherapy — I never had any.
After a couple of days in the red-resus of pain delights, I was moved to a side room on an acute medical ward; this at least had a window, even if it overlooked a wall, it was something. Technically, I wasn’t so much ‘moved’ as ‘decanted’ as if my lees were being left behind. The statistics probably show that this was when I was admitted; up to then I’d been ‘waiting’. The treatments continued, with observations being taken every few hours, and very typically at 3AM My blood pressure remained low, and I was told to drink more water, which I did; it only made me pee more. Daily visits from a consultant continued, but these were more vocal than the previous ones, even if I didn’t always fully understand what they were saying — my deafness and their masks and visors. One was good enough to write down his questions and comments.
I do remember that all of the consultants I saw and who treated me, and all but one of the junior staff were ‘locums’. A locum tenens is a medic who takes the place of another if the person is sick or on leave. Unlike substantive appointments, it’s easy to appoint a locum, you just do it. Watching the medical and other staff convinced me, though they never said anything, that they were all working under great stress, and that despite the numbers, they were understaffed; the locums weren’t replacements, they were extras, vitally necessary because of the pressures the hospital was under.
After a few days on the acute medical ward, I was again decanted to what I suppose is a ‘normal’ medical ward; hopefully a sign that I was responding to the treatment and improving. This side room did have a better view, but one over buildings and tarmac. There’s no doubt that hospital in-patients’ recovery is greatly improved if they can look outside and see greenery; alas, hospitals here have taken over any green spaces for ‘development’ and car parks. I was sent off for spirometry (breathing tests); these involve breathing out as quickly and as deeply as possible, and stopping and starting, and so on. The tests are very difficult; I was graded as a ‘bad fail’. I also had yet another CT to see if I’d had a pulmonary embolus — a clot arising in the legs and passing to the lungs. I didn’t think I’d had one; I was right.
I was also told I had a systolic heart murmur, something that came as a big surprise. I had a cardiac ultrasound which I was told was normal by the sonographer — at least that’s what I think she said; there was no explanation for the heart murmur. My right leg has been swollen from the start of this journey; the swelling seemed to be pitting, that is you could indent it with your thumb, where previously it was very solid. One consultant seemed very excited by this, and tried to tell me that it was a sign of heart failure. I had the temerity to disagree; the swelling was little different from what I’d had for months, and only my right leg was affected. Heart failure gives you swelling in both legs.
After twelve days of all this I was getting fed up of being trapped inside, and with the view. On the Friday afternoon it was suggested I should have physiotherapy; about time you might think. I said I wanted to go home, this was pooh-poohed, and so I actually signed the form. Clearly, arguing with the mighty consultants is not a way to ingratiate yourself. I also thought I should show magnanimity towards the next unfortunate waiting to be admitted, rather than being a ‘bed-blocker’.
I was really quite doddery at home, not having been able to walk around for nearly a fortnight. The kids got me a rollator — think of a Zimmer frame on wheels — and with this at least I could get up and move around the house, and get to the loo bathroom. The community physiotherapist and community occupational therapist came out, and gave us lots of very useful and sensible advice about simple changes to make things easier, and provided a raise for the loo which is very helpful. I tried the rollator outside, but the small wheels aren’t suited to gravel. I bought a Swedish model, a Wubble which is designed for this, and can get about reasonably well with it. No dromedary is supplied with it, though. I even had a walk around Peatlands Park:
The ‘dodgy looking chap’ behind me is my minder and second son. Tucked into my shirt pocket is a fall alarm for use around the house; I’ve not needed it so far.
I was also persuaded to get an Apple Watch; this has a built-in pulse rate monitor, and another for the oxygen sats. It has a fall alarm; if I coup and don’t quickly respond, it will ring the family members to alert them. (It also tells the time.) It gives you a little map of where you’ve walked:
Boots Chemists have a great home delivery system for prescriptions. One day, as well as the stuff I was expecting, I found a packet of bisoprolol fumarate, a beta-blocker. In small doses, this is used to regulate the heart rate. The packet said, ‘as ordered by the cardiologist’, which was odd as I didn’t think I had a cardiologist. After a lot of toing and froing, the pharmacist was able to reassure me that it had indeed been ordered by a cardiologist. After only one day on this, my resting pulse fell from around 90 to 70 beats a minute; and my heart rate went up by around 20 beats less a minute on exercise; this all made me feel rather better, if puzzled.
Shortly afterwards, I got notice of a cardiology appointment at Craigavon; it was for early in the morning. After the usual preliminaries, pulse, blood pressure, and ECG, I got to meet the cardiologist. In that bright, chirpy way some consultants have, she said I had HOCM (it’s pronounced hokum). At that time in the morning, and without adequate caffeination, my cerebral clockwork doesn’t work so well; I was quite flummoxed by this news. I had imagined all sorts of reasons for my systolic murmur, and possible heart failure, but not this.
HOCM is hypertrophic obstructive cardiomyopathy, a thickening of the heart muscle, particularly on the left and the septum, the bit between the major chambers of the heart. This enlargement can be enough to narrow the outflow of blood from the heart. She explained this, and much more about how it can involve the mitral valve (which opens to allow the ventricle, the major pumping chamber, to fill). It wasn’t until I was in the car that the significance of this began to sink in; breathless on exertion is a prime feature of HOCM, and something I’ve had from my twenties. HOCM is also a leading cause of death in young, fit footballers; it was — and is — alarming to think I’ve been living with this most of my life, and that I might have dropped dead anytime ascending the Alps or even the Mournes. The worst experience was climbing Munt Baselgia in eastern Switzerland on honeymoon, even though it’s a bit less than 3,000 meters above sea level. I was near to hallucinating from hypocapnia due to hyperventilation at the summit. The Rehrücken — saddle of venison with all the trimmings — for dinner at the Hotel Baer & Post in Zernez more than made up for it.
She also explained that there can be a genetic component of HOCM; for that reason I’m to have another cardiac scan, this time with contrast. Depending on the results, my kids may need to be screened for the disease. Passing on my matinee-idol looks and coruscating intelligence is one thing, passing on HOCM is quite another.
My cardiologist — doesn’t that sound posh — agreed that red wine was good for the heart. I said I would take the advice of French Médecins from the 1950s — no more than a litre a day.
I got yet another outpatient appointment with the consultant who drained my pleural effusion a year ago. I thought I’d been discharged, and told the appointments clerks this several times, but to no avail. I began to think he must know something I didn’t, so I kept this one. But he didn’t know why he was sending for me any more than I did; so my attendance became more of a social visit than anything — and an opportunity to gently tease the innocent medical student who was sitting in, supposedly learning. At least there was no underlying mystery here. I got weighed and heighted, and was disturbed to find I’d lost another 2cms in height. At this rate, I’ll soon be a two-dimensional pentagon in Flatland.
What of the fons et origo mali of all this, my prostate cancer? Well, I had a phone consultation with an oncologist a few weeks after my discharge. My PSA, the blood test used for monitoring, had fallen, and this was strange as I wasn’t on any very effective treatment. I still get the decapeptyl shots every three months, but they really don’t do much anymore. Cancers and their metastases don’t like low blood sats — hypoxia — so perhaps there’s a strange benefit to my COPD and HOCM; yet another mystery.
I started off here with one potentially fatal disease, and now I have three, more than enough I think. Other than shovelling a clatter of pills and tablets into me twice a day, I’m not sure there’s much I can do to make any of them go away, or at least recede into the background.
I began with a rather mangled quote from The Walrus and the Carpenter:
‘The time has come,’ the Walrus said,
‘To talk of many things:
Of shoes — and ships — and sealing-wax —
Of cabbages — and kings —
And why the sea is boiling hot —
And whether pigs have wings.’
One of these things is clear nowadays; we know ‘why the sea is boiling hot’, and we know what’s to be done. And we also know that much of the responsibility for this is borne by my generation, the Baby Boomers. It’s another legacy I’m ashamed of.
My Thanks to SeaánUiNeill and Brian O’Neill for their Critical Reading
More information on HOCM is available at these sites:
https://en.wikipedia.org/wiki/Hypertrophic_cardiomyopathy
https://www.nhs.uk/conditions/cardiomyopathy/
https://www.cardiomyopathy.org/
https://www.cardiomyopathy.org/nire
https://en.wikipedia.org/wiki/Sudden_cardiac_death_of_athletes
Robert Campbell is a retired surgeon.
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