I’ve been acquiring quite a collection of the letters that hospital consultants send to your GP informing them of the appointments you have had with them, their diagnoses, treatments, and discharge notes. Clearly there is a preferred format and style for writing these. They usually begin something like this:
It was a pleasure to meet this pleasant gentleman, who presented with a pain in the lower abdomen that he had had for six weeks, which made walking almost impossible… etcetera.
Some of my favourites include the nurse’s letter which describes me as ‘this gentleman’ in nearly every sentence (I have pretty strong objections to being called a gentleman in the first place: I’m with John Ball on this: ‘When Adam delved and Eve span, who was then the gentleman?’) when a simple ‘he’ or even ‘Mr Price’ would have sounded less clunky. And most recently, the one which began ‘It was a delight to meet this 70-year old chap…’
Apart from the fact that I’M NOT YET 70, I’M STILL ONLY 69! it sounded like something you might (just about) say but not write, or as if English was not his first language — as it probably wasn’t, in this chap’s case. What you call a man is possibly one of the most awkward idioms to learn in a language not quite your own. Like with my American friends who had learned that ‘bloke’ was a common English term for a man, but hadn’t quite grasped that you don’t use it as a direct form of address, as in saying to a barman “A pint of beer, please. Thanks, bloke.”
In any case, I would propose a different style and content altogether. Something more along the lines of:
Mr Price is a miserable old curmudgeon, whose pleasant and cheerful manner is a mask he assumes to conceal his pain and fear, and the fact that he is really screaming inside…
It would be more honest. But I suppose not entirely the kind of thing you’d want a doctor who didn’t know you to be the first thing they learn about you from your permanent medical records.
I had one of those dreams that clergy have — even retired ones, it turns out. Forgetting my vow that I would never do it again, I had agreed to conduct a wedding. And like all dream weddings, everything that could possibly go wrong was going wrong.
It was a church I didn’t know. We were conducting the marriage outside the church door, in the very ancient traditional manner. But because the path from the church door to the car park was a long one, all the guests were standing around in the distant car park, and none of them could be persuaded to come any nearer.
Then there was the trouble with the kitten. So I tied a soft toy to a piece of string to distract it; the kitten leaped at it and held fast and was hoisted to the top of the vestry cupboard, about seven feet off the ground, where it stood for a moment in terror before launching itself off and jumping to the ground.
Don’t even get me started on the problems I was having finding the service books. Surely a church where I had been invited to conduct a wedding would have copies of the service? Surely someone would have thought to put them out? Apparently not. It seems highly likely that in this scenario the organist would not have turned up, the marriage registers would be nowhere to be found, the bridesmaids (or even the bride) would throw up in front of me…
But not waiting to find out, I woke up. Wondering how to persuade my Dream Self to take the same vow as Waking Self. And to keep it, too.
The title of my next book? A light-hearted, yet strangely deep and philosophically wise memoir of the experiences of a trainee urology nurse? Not quite…
This is the next instalment of my continuing health saga. In the last episode, I promised that ‘the next part of the adventure sounds so scary I haven’t even dared to google it’. Now read on, if you have the stomach for it…
The discharge summary after my TWOC just over a week ago was couched in a more breezily colloquial (yet also more coded) style than some of my consultant surgeon’s summaries have been.
Mr Price had a optical urethrotomy for bulbar urethral stricture on 15/05/19. He was discharged home with a urinary IDC in situ. Today, he presented to triage for a TWOC. He was otherwise well in himself. The IDC was removed with ease. He successfully passed the TWOC with 97mls PVR. We therefore discharged him home with safety netting advice which he acknowledged. Nil urology triage f/u needed.
Today’s scary part that I hadn’t even dared to google, because I really didn’t want to know too much about it beforehand, was innocuously advertised as an appointment at the ISC and Continence Clinic. That ISC is the sharp-toothed part: it stands for Intermittent Self Catheterization. The problem with urethral strictures, apparently, (whether bulbar or otherwise) is that the scarring can get worse again, causing the stricture to grow and cause renewed urinary retention. The way of preventing this, and keeping the urethra as open as possible, is to insert a catheter at regular intervals. Not to stay in, but just to remind that stricture not to grow.
We met K., the lovely nurse who was going to deliver this training. She produced three different types of catheter which she showed, described and demonstrated. It was a touch like speed dating, because she then popped the question, “Is there one of these that you feel particularly drawn to?” ‘None of the above’ was clearly not going to be an acceptable answer; but in fact there was one design which looked less unappealing, maybe I should even say more my style, than the other two.
Thereupon the next step was to actually try the thing out, watched with loving attention by K. and Alison (who was there to learn how it was done, in case I ever needed help or encouragement?) With reminders and a lot of that encouragement as we proceeded, I succeeded in catheterizing myself with the device I had been particularly drawn to. It is the weirdest of sensations, strange enough when it’s being done to you by someone else, but even stranger when you’re doing it to yourself. There was quite a lot of
“How far does it have to go in? Are we nearly there yet?”
“It has to go all the way into the bladder.”
“How will I know when it gets there?”
Yes, you will, because when the end of the catheter arrives in the bladder, it immediately begins to drain urine, even if you’ve only just been to the toilet. It only took a few seconds to stop draining, since I had retained very little after the flow test that preceded all this. And then the catheter is removed. Slowly and gently. And this also is a weird sensation.
Much praise from K. (“You did really well.”) Much relief from me. I’ve always been a great fan of Lifelong Learning; but I never expected the syllabus to include this. But there is certainly a large amount of pride in doing something you could not have imagined doing, or even thought would be impossible.
K. tells me to do this impossible thing daily for the next fortnight, then every other day, then perhaps once or twice a week. Maybe ‘for the rest of my days’, as she put it. Or maybe it will only be when, or if, I sense the stricture is becoming a problem again. There’s a follow-up appointment in a few weeks’ time, which may shed more light.
They say that a huge percentage of NHS services are consumed by the over 65s. I’m beginning to have a much clearer understanding of what this means; and that I am one of those more frequent users. Thank God for the NHS.
The health — or rather ill-health — saga continues.
At the beginning of May we decided to go away for a few days, the first time we’ve had a ‘holiday’ kind of break since my operation in December. Just a little break for a change of scene and a bit of pampering with other people doing the catering for us… There were a couple of days when the weather was good enough to do a bit of walking, about as much as I could manage, or to go and visit a nearby National Trust property. The food was good, the room was comfortable, the setting was pleasant. So it was nice break. Except for the last night when I developed acute urinary retention, and was awake much of the night trying unsuccessfully to empty my bladder. If you’ve never had this experience, just take it from me that it’s a painful one.
Fortunately we weren’t too far from home; but even so, the drive home was painful. By the time we arrived, Urology wouldn’t agree to see me because I presented my situation wrongly, and they told me to contact my GP, but by that time it was too late to get an appointment. Instead the GP suggested I should phone 111 and contact the out-of-hours service. An interesting experience, where you’re faced with a barrage of questions obviously being read off the screen of some iDiagnosis app. My favourites included ‘Are there any blisters around the genital area?’ ‘Have you recently had sex with anyone who might have had an STD?’ and ‘Have you recently been suffering severe breathlessness?’ (I’ve since discovered this last can be a symptom of sepsis, so I’m glad I didn’t have it. Or, incidentally, any of the others.) The result was, I was given an appointment to see a clinician within about an hour, though it did involve a 15 mile drive to Bicester.
The doctor I saw had a feel of my abdomen and confirmed that I had a palpable bladder. Yes, I could have told him that. He catheterized me: the first size he tried to insert was too big, so he had to use a smaller 12-bore instead, which successfully drained about a litre of urine. He then prescribed tamsulosin to stretch the passage, and an antibiotic because he believed I had a urinary infection. (I was sceptical about this, having been on ciprofloxacin for about 8 weeks, but …) And sent me away for the weekend.
First thing on Monday morning I tried to contact my surgeon to tell him what had been going on; he phoned me back with an appointment for his clinic the following day. Which we attended, and he attempted to perform a cystoscopy but couldn’t insert it because of the narrowing of the urethra. This at least confirmed that this was the problem, so he admitted me as an urgent case to perform an urethrostomy.
Urethrostomy: (an endoscopic procedure typically performed under general anesthesia. A thin tube with a camera (endoscope) is inserted into the urethra to visualize the stricture. Then a tiny knife is passed through the endoscope to cut the stricture lengthwise and open the flow of urine. Wikipedia.)
No theatre time available that evening, so I had to wait till the following day, and in the mean time my bladder was full again. This time they didn’t want to insert another catheter, so they drained it by inserting a needle into the bladder through my abdominal wall. It sounds worse than it felt — though indeed, I wasn’t looking — and the worst thing was them pressing on my abdomen to get the urine to come out through the needle which was only the size of a hypodermic. It took a while, but it was ahuge relief, and kept me comfortable until the time of the procedure late the following morning.
It didn’t take long, which meant the general anaesthetic didn’t leave me as groggy as the last one I had on Christmas Eve. The stricture was cut, I was left with another catheter in place, but at least the choice this time of whether I wanted a leg bag, or a short tube with a tap on the end that I could drain at will, with the option of a larger night bag while I was asleep. I chose the second: the leg bag was really not something I wanted. Though the catheter with tap was also not a comfortable thing to have around, principally because it was in the tube where I’d recently had the knife.
One week on: catheter removed; TWOC satisfactorily passed — though this time the nurse tells me (which I didn’t want to hear) that success is only provisional in a sense, because the ‘trial’ continues through the following two or three days, when, if you have any recurring problems with retention, you need to contact Urology and be re-admitted. At least if it does happen again, I will know how to describe my condition in the right way and be able to insist on being admitted.
For the time being, it’s a huge relief to be catheter-free, able to pass urine more easily, and just feeling a lot better. Yesterday I had an appointment with the bone infection unit, where the consultant was pleased with what he heard about my improvement while taking the ciprofloxacin. The pain in the pelvis has more or less completely gone. I can walk again, though I could still benefit from some physiotherapy to build up the core strength I lost during the weeks I couldn’t walk. The antibiotic still has three more weeks to run, and he said I should take it to the end. He can’t give an unconditional promise, but he’s confident that that should ‘almost certainly’ clear the infection completely. He wasn’t planning to do another scan because at this stage it was unlikely to provide any helpful information. I should carry on with life when the course of antibiotics finishes, and contact them only if there’s any recurrence of symptoms. So I suppose that’s good news.
We’re not completely out of the woods yet, and the next part of the adventure sounds so scary I haven’t even dared to google it. (Watch this space.) But we may be getting nearer to being in sight of the end of it. Perhaps then I’ll be able to blog about something more cheerful than my pelvic regions and bladder.
During this continuing long convalescence – if you don’t know what that’s all about, you haven’t been paying attention to my earlier posts – I’ve had to resort to all the kinds of amusements and pastimes that the long-term sick commonly resort to. It’s a tedious business, being ill for a long time and unable to engage in all the activities you’re used to. You get bored with inactivity, stir-crazy from being effectively housebound for long days and weeks; it’s alarming, even, to discover how quickly your muscles begin to waste away if you’re not using them. True, I’m now able to get out a bit more and walk half a mile or so; the muscles in my buttocks and thighs don’t complain as much as they did when I first tried getting out again. But there are still long hours of sitting at home without much to do.
So… there are books to read. Though the one attraction you imagine there will be about illness – “Now I’ll be able to read all those books I’ve not been able to get around to!” – doesn’t quite live up to hope and expectation, because most illness takes away the concentration that you need to read as much as you’d like. Still, I’ve read or re-read a number of good things. Currently I’m about halfway through Diarmaid MacCulloch’s Reformation: Europe’s House Divided 1490-1700, which I never managed to finish before. It’s a fascinating story, well-told and entertaining, and one of those books that makes you wonder how anyone can possibly know and remember so much and present it in such an engaging way.
There are DVDs and TV and Netflix movies to watch. I finally viewed my way right to the end of The West Wing: it only took me 4 or 5 years because of a long intermission after I first retired. I even watched a few more episodes of Buffy the Vampire Slayer, though on the whole I have much preferred more recent series like Sex Education and Fleabag. And a recent discovery, recommended by one of the reviewers in The Big Issue: Deutschland 83 on All4.
And then, of course, there are my computers and the Internet. One of the constant quests of my computing history has been to find the perfect note-taking, -keeping and -storing programme. Some years ago there was a lot of talk about this being an ‘everything bucket’: a place, program or app where you could simply dump and save everything. Conventional filing systems were places you could typically store stuff, and typically never find it again – or only with great difficulty. The ‘everything bucket’ would have perfect search and retrieval functions, so that you would never be unable to find what you wanted, ever again. As far as I can tell, there is no longer much talk about everything buckets. Perhaps it’s because Evernote has pretty much cornered the market? I did use Evernote for quite a time, but for me the problem was not lack of ability to search and retrieve, but not being able to remember what I’d thrown in there, anyway. Also, I became disenchanted when they changed their terms and wanted to charge a subscription for some of the functions I had been using for nothing.
Since then, of course, much more of everyone’s computing is in the Cloud, and it’s become much more usual to have to pay for the privilege of using some of these functions. I still much prefer the freebies, but… So I’ve been looking at some of the current crop of
Coda is a new resource combining document creation with interactive tools like gantt, kanban, tables and more. Coda is a combination of Dropbox Paper and Evernote. With a growing audience and template gallery, Coda is becoming a fluid place to store your notes.
Dropbox Paper is one that many praise for its flexibility and connection with storage tool Dropbox. Paper allows users to create documents, meeting notes and assign and delegate tasks across a team. These collaborative documents are similar to Google Docs and Coda but combine more media and project management tools to the table.
Pricing: Free, with 1k blocks. $4.99 per month (personal)
Notion is the rising star of the personal productivity space. Notion combines the interactivity of Coda and Dropbox Paper whilst allowing you to add elements anywhere, anytime. Notion doesn’t have a structure, but for those who want the add more than just text and images to their notes.
Best for: project management, visual thinkers
But as for the question of whether or not anyone actually needs this…
So here I am, still trying one of these after the other, and still little the wiser. On the other hand, I really do need somewhere I can keep all the records of my symptoms, the meds I’m taking, all those Google searches for the terrible possible side-effects, my hospital appointments… and so on. It helps to pass the time.
Often sung during Lent (and at weddings?) is the well-loved traditional hymn, Lead us, heavenly Father, lead us. Written by James Edmeston (1791-1867), an architect, surveyor and prolific hymn writer – though this is the only hymn penned by him that appears in any of the hymnals I know – it takes a trinitarian form in which the three verses are addressed in turn to the Father, Son and Holy Spirit, as we pray for their presence and guidance through life.
The second verse, addressed to Jesus, appeals to his humanity which enables him to understand, because he has shared, all our experiences of weakness and temptation:
Saviour, breathe forgiveness o’er us all our weakness thou dost know; thou didst tread this earth before us, thou didst feel its keenest woe; lone and dreary, faint and weary, through the desert thou didst go.
The last time I sang this in our parish church, I found that something strange had happened to the 5th line of this verse. Perhaps some bright spark, or possibly committee, felt it sounded a touch too, well, defeated, for the Superhero Saviour that we want to present Jesus as nowadays? So that the verse we sang went:
Saviour, breathe forgiveness o’er us all our weakness thou dost know; thou didst tread this earth before us, thou didst feel its keenest woe; tempted, taunted, yet undaunted, through the desert thou didst go.
Three little adjectives, in place of Edmeston’s four; yet the third somehow undermines the effect of the first two, by making Jesus’ victory sound easier and more heroic. Am I the only person who thinks this might even reflect a kind of Docetic tendency in modern Christology? The heresy which teaches that Jesus only seemed to be human, over against orthodox teaching which has always been that it was only by being really, truly, fully human in every way, sharing every weakness of the human condition, that Jesus was able to be a Saviour at all?
Anyway. All of this (possibly anorakish?) hymnological rant is really only to serve as an introduction to the account of my long, long, not lone, but certainly dreary, faint and weary Lent. Most often the virtue of Lent is that you choose the disciplines of giving something up, or taking something up, in order to try and grow spiritually. Some new discipline or personal prayer or reading. Some self-denial of abstaining from a pleasure like alcohol or chocolate.
But then, sometimes, life whacks you with the kind of Lent you don’t choose for yourself, like the extended Lent I’ve been having. Weeks of pain from the osteomyelitis bone infection, so that I’ve been virtually housebound and unable to do many of the things I would have liked to do – even just going for a walk, walking to church, going out to the pub or for a meal. A whole pharmacy-full of antibiotics and pain medications and accompanying laxatives. And yes: no alcohol. What I’ve rarely been able to achieve for a whole Lent by choice, I’ve had to do because alcohol is strictly forbidden if you’re taking codeine. And I’m not even sure that this imposed Lent will end with the joyful Resurrection of Easter on April 21. The six-week course of antibiotics, which may in any case need to be extended, doesn’t end until Easter Week. I’ve been hoping the pain would have gone before the antibiotics finished, and I’d be able to come off the codeine and start making up for all the glasses of wine I’ve missed. But we’re over halfway there, and who knows?
And what about the spiritual aspect of all this? My spiritual director or soul-friend is going to be asking, “And what do you think God is saying in all of this? What have you been learning?” These are good questions… But the answer is mostly, I simply don’t know. Perhaps it’s a message about mortality. About the inescapable fact that we are not in control of our lives, our destinies, our health or our future. Perhaps it’s some kind of training in trust, patience, courage, simply accepting whatever bad stuff life throws at us, and getting on with it. Perhaps it’s one of those times you’re supposed to count your blessings, like I did when I was in hospital for a couple of nights and all the other guys in the room were much worse off than I am. Perhaps it’s a preparation for relief, joy, or gratitude when (or possibly, if) it’s all over and I’m better. Perhaps it’s all of these.
But in the mean time, it’s still a long, long Lent. That I’d often rather be doing without.
When the medics and the tests finally reached a diagnosis of the condition that has taken out six weeks of my February and March (so far!), it was that I had osteomyelitis of the symphysis pubis. This is a rare condition: so rare that it doesn’t even appear on the NHS website. A ‘rare and elusive diagnosis’, which probably explains why it took them so long to arrive at it.
When I finally got around to pressing for a consultation with my surgeon, he was as puzzled as the local GPs had been. That’s the great advantage of being a medical curiosity: the professionals get interested and really want to find out what’s going on. Although it involved a lot of sitting around in hospital waiting rooms both that day and a number of days following, the battery of tests finally pointed to a result. Two MRI scans and blood tests indicated that there was evidence of an infection around the symphysis pubis. This is treatable with antibiotics, but they have to be pretty serious antibiotics, and the course is likely to take six weeks or longer. Naturally it’s important to identify the exact bacterium and target it with the most appropriate antibiotic. My surgeon was very keen to get me in and start IV antibiotics as soon as possible; so after the second MRI and a cystogram to make sure there were no leaks of urine from my bladder or urethra, I was admitted to the Urology Ward, precautionarily catheterized (oh, joy!) and written up for broad spectrum antibiotics.
At this point a near mythical character enters the story: The Microbiologist. My surgeon told the Microbiologist what he proposed, and the Microbiologist commanded to hold off on the treatment until a biopsy could be performed. I suppose this is the problem with having a condition that requires interdisciplinary cooperation: it’s not a question of my surgeon being outranked, but that if you ask a colleague of another specialism for help, you pretty much have to do what they say, even if you’d prefer to get on with what you first thought of. But it made sense, really. Broad spectrum antibiotics before the biopsy could easily mask the real cause of the infection, and make that all-important targeting difficult to impossible.
So I was sent home with catheter, after 24 hours in hospital, to wait for the biopsy. We hoped this would be done on Monday. It wasn’t possible until Tuesday, when we returned to the hospital’s orthopaedic centre. A biopsy of the pelvis isn’t a pleasant procedure, no matter how charming the radiologists and nurses may be, who are administering it. It involves lying under the X-ray, having your belly injected with local anaesthetic until the repeated question “Any pain, now?” gets an honest No answer. Then the biopsy needle is inserted, and though I wasn’t looking too closely (I wouldn’t have been able to see anyway) it was clear they were drilling into the bone. They did succeed in getting three good samples.
Then we drove on to the Urology Ward again. (The hospitals are on three different sites, and my surgeon wanted to keep his eye on me, rather than let me be taken over by orthopaedics, which is probably what they wanted to do.) Admission again, cannula in, more blood tests, and finally the first IV antibiotics.
The following day was taken up with waiting for results of the biopsy, because on this depended whether I would be allowed to go home with oral antibiotics, or whether they would want to continue IV administration which would involve setting up a plan for that to happen. There were some high points in the day: family visiting, and a consultant (I’m not sure of what specialism) coming to ask if she could bring some medical students to talk to me about my condition. (Another fun consequence of being a medical curiosity.) With various health professionals in the family, I’m happy to help in the training of future medics; and the four students who arrived were delightful young people. I enjoyed watching them being put through their paces of asking me questions, telling the consultant what they had learned from my answers, what else they should have asked or noticed, and carrying out some physical examination. One of the most helpful things in the whole experience of going through all this pain and incapacity, has been the opportunity to talk to many different people about it. Talking somehow puts things in perspective: the ‘talking cure’ is obviously not just for mental health problems, but can also help in the cure of physical ones.
During the day we were inching towards an identification of the infection: word came up that it was a coliform bacterium – maybe not that surprising, but they still needed to know which one. They weren’t any nearer to knowing why I was one of the 1 in 500 prostatectomy patients who suffer this complication. The video of the surgery showed that the pelvis had not been nicked during the procedure. Possibly the cutting and rejoining of the urethra had allowed some urine to remain in the pelvic space, and this might have caused an E.coli infection some five weeks after the operation. Perhaps we’ll never know. E.coli is always present in the body, but why should it be ‘triggered’ in this particular case?
While MPs in Westminster were voting to reject a ‘no-deal’ Brexit, I was getting ready for a second night in hospital. It was uncomfortable because of the pain, but at least the catheter meant I wasn’t having to get in and out of bed to go to the toilet every hour.
And another day dawned. At last the Bone Infection Unit consultant brought news that it was indeed an E.coli infection and could be treated with a six-week course of oral ciprofloxacin, and I would be allowed home that afternoon. This would have meant returning the next morning to have the catheter removed, so I asked if that couldn’t be done that afternoon: it was only a little more than 12 hours earlier than we had agreed. Luckily, my surgeon agreed, the nurse had the catheter out within minutes, there was the usual procedure of drinking fluids and producing urine to prove that the bladder and urethra were working normally, and at last I walked out through those hospital doors.
You always hope that every next step in the treatment process will produce almost instant results, that you’ll feel immediately well again. It’s already clear that isn’t how it works. So, though I have moved on to the next stage of recovery, it is only the next stage. There is still more to come. Readers of a queasier disposition may be hoping, not too much more.