Adventures with a catheter

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?”

“You’ll know.”

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.

And so it goes on

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.

Do I really need an everything bucket?

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

Evernote Alternatives

These are the ones I thought looked best (with comments from the site). You’ll note that most of them emphasise the

Coda

Availability: Web-only

Pricing: Free (pricing unreleased)

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.

Rating: 7.5/10

Best for: doc lovers, Google users, professionals

Dropbox Paper

Availability: iOS/Android/Web

Pricing: Free w/ Dropbox account

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.

Rating: 8/10

Best for: doc lovers, professionals

Notion

Availability: iOS/Android/Web/Mac/Windows

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.

Rating: 8/10

Best for: project management, visual thinkers


But as for the question of whether or not anyone actually needs this…

Why you should have an ‘everything bucket’

Why you shouldn’t use an everything bucket

Are digital Everything Buckets a good filing system? – Unclutterer


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.

A long, long Lent

Lone and dreary, faint and weary?

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.

On being a medical curiosity

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.

Why do we need libraries, anyway?

I’ve said it before, I may well say it again: inside this retired vicar’s breast there still beats the heart of a librarian – albeit one who is very relieved he didn’t spend his whole life in librarianship, in view of the trials and tribulations libraries have been suffering in this country, for as long as I or probably anyone else can remember. Just a few of the statistics tell it all:

  • In 2016 alone, 105 public libraries closed in the UK.
  • Between 2016 and 2017, public library spending fell by £66 million.
  • Annual UK spending on public libraries is just £14.40 per head of the population.
  • The UK is only the 17th most literate nation in the world.

Meanwhile, in Finland, which the UN declared in 2016 the most literate nation in the world they spend £50.50 per inhabitant on public libraries. Nearly four times as much. They’ve just spent €100 million on a new library in Helsinki, called Oodi, even though there are already 36 public libraries in the city.

I wonder if there could be any connection between these statistics, and the highest rate of literacy?

In a May 2018 story in the Guardian about Finland’s libraries, the report begins with the inspiring story of a young girl named Nasima Razmyar who arrived in Finland from Afghanistan in 1992 as a political refugee and asylum seeker. Her father had been a former Afghan diplomat, forced to flee with his family to seek safety elsewhere.

“A library card was the first thing that was mine, that I had ever owned,” says Nasima Razmyar. … Unable to speak the language, with scant resources, and trying to make sense of the strange new city she found herself in, she was stunned to discover she was entitled to a library card that would grant her books – for free. Her appreciation of the privilege has not faded: “I still have that library card in my wallet today,” she says proudly.

That girl is now the deputy mayor of Helsinki, and justly proud of the new library which provides so much more than most of what we in the UK associate with libraries. The Finns see libraries as the visible symbol of their beliefs in education, equality and citizenship, which make me want to ask hard questions about whether we even mean the same things as they do, when we or our politicians mouth those words.

Public libraries are clearly one of the key providers of equality of opportunity. Maybe that’s one of the reasons why successive cost-cutting Governments have starved them of resources?

What happened to February, then?

It’s alarming to find myself at the end of February / beginning of March, with two months of this year already past, and myself still feeling so incapacitated. I had expected to be up and running, more or less fully functioning again (though still able to say I have to take it easy, if I felt like it). Instead, February has disappeared in a fog of pain and inability to do very much at all, sometimes even walk without the aid of walking poles, or hobbling around the house levering myself around the furniture.

It started on 31 January, when I woke up with a pain in my groin, which felt as if I had just pulled a muscle or tendon in the night. However, it went on for several days; at that time walking was still possible, but getting in and out of bed was uncomfortable, rather like when you have lower back pain. When I went to the hospital for my post-operation check-up, the consultant examined me to make sure I didn’t have a hernia (apparently I didn’t, but I didn’t think I had), and said this pain was the kind of thing that might occur any time for two or three months after a prostatectomy. And “Just keep taking the paracetamol.”

A week into The Pain, when it felt much more as if it was in the whole lower abdomen, I phoned my GP to see if she had any bright ideas. She recommended taking ibuprofen as well as the paracetamol, and said she could prescribe a stronger form of non-steroidal anti-inflammatory if I wanted. I said I’d leave it for the time being and get back to her if I changed my mind. I carried on trying to keep up a normal routine as much as possible, but at the end of the second week I phoned the GP again to get the stronger painkiller (Naproxen) and omeprazole to protect my stomach from bleeding.

The painkillers didn’t seem to do very much — there was no sense that the pain got better after taking them, and then gradually got worse again as the time for the next dose drew near. The day after starting the naproxen we thought it would be nice to go into Oxford for lunch. This was the first time I went out with my two walking poles in the hope they would help me walk more easily. They did; but most days I didn’t feel much like going out at all, and sat a lot at home, hoping that wasn’t making things worse, but not really being able to do anything else anyway.

In the meantime (because I had thought that by February I would be getting better) I had agreed to take a few Sunday services and other commitments. Mostly I managed these, but after the last one I was in so much pain I could barely hobble around the house, dragging myself about by holding onto the furniture and the walls. Luckily it’s a small house, so a wall is never far away.

The following day I phoned the GP again. This time he was of the opinion that something more was going on, than just a post-operative healing complication. He asked me to let them have a urine sample, to test for a urinary infection. “But surely a UTI couldn’t cause this much pain to the whole groin region, and make it so hard to even walk?” Apparently it can; and by now I was getting some of the other, more familiar, symptoms of a UTI — which I hadn’t had before — needing to pee much more often (up to 5 or 6 times a night) and not producing very much when I did. It’s a funny thing to be pinning your hopes on having a urinary infection, because at least that can be treated with antibiotics, and if it is the cause of all the pain, you might actually start to feel better.

So now it’s the end of Week 4, and I’ve been told my test results have reached the practice, and probably show I do have an infection, but they haven’t yet been checked by a doctor, and my request for a call today doesn’t seem to be possible. So another night and probably day of pain lie ahead, especially as our local pharmacy is also woefully understaffed, and even if they get the prescription tomorrow, they may not be able to dispense it till Saturday.

And that’s what happened to February…

Postscript: My GP is a star! She phoned at 7.40 p.m., when I imagined she would have long finished work (and indeed, as the father-in-law of a GP, think she jolly well should have) to tell me she’s written a prescription for antibiotics and it will be ready to collect at reception in the morning. I’m hoping collecting it and taking it to the pharmacy in person may get it dispensed quicker than her sending it electronically.

Prostate Story, Part 3: TWOC

The next chapter of the Prostate Story involves living with a catheter while the cutting and resectioning of the urethra heals. I think I read or heard somewhere that they used to remove the prostate gland by shaving it off around the urethra. This proved to be neither very efficient or successful, because it often didn’t remove all the tissue, and some of what was left behind might be cancerous. What they do instead is cut the urethra on either side of the prostate gland, remove that section as well as the prostate, then join together the two loose ends. According to the documentation, this means you are not able to urinate naturally, so the catheter is necessary.

I’ve never experienced one before; and if I ever have to again, it will be way too soon. Some of the documentation warns that the catheter may have to remain in place for 2 to 4 weeks; I was relieved to read that the Oxford Hospitals say 7 to 10 days. Because of Christmas and New Year holidays, it was the full 10 days before my appointment arrived.

Turning up at the hospital at 8.00 a.m. on a cold January morning, to find that the clinic doesn’t open until 8.00, and all the appointments are timed for 8.00. This amounts to a wait in anyone’s book, for which I suppose there’s a good reason (as we may see), and it was indeed 9.00 before the nurse called me in.

The appointment is called TWOC, which stands for ‘trial without catheter’: an unwelcome reminder that though you’ve come in hope and expectation that your catheter will be removed, there’s no guarantee that you will go home without one. Should you fail the trial…

The nurse begins with a series of routine questions. She is inordinately interested in bowel movements. “Are you constipated? Have you opened your bowels within the last 24 hours? Are you feeling any pain around the catheter site?” Depending on where you draw the line between pain and just discomfort, you may lie a little…

Then she attaches a small syringe to the catheter and drains the bubble in the bladder which has been holding the catheter in place. She gets ready to pull the tube out along the urethra. “This may feel a bit strange.” Yes, you could say that.

And then the ‘trial’ begins. She sends you out to sit in the waiting area – along with a mixed multitude, some of whom are undergoing the same trial, others waiting for other kinds of appointments or consultations. The instructions are to keep drinking water, and when you need to empty your bladder, go into the specially designated toilet (TWOC patients only) and fill a cardboard bottle. Then tell the nurse, who measures the amount you’ve produced and then performs an ultrasound scan to discover how much remains in the bladder. In order to pass the trial, you have to produce significantly more in the bottle than remains in the bladder, twice. And then you can go home.

Producing any urine at all after not doing so for 10 days is a bit painful. But I did it! And was allowed to leave without catheter. Huge relief all round. Now I just have to learn to pee again, and while I’m learning there is a degree of involuntary leakage before and afterwards. So we are told to resume the pelvic floor exercises to strengthen the muscles.

Prostate Story: Part 2

Time becomes whimsical, when you’re waiting for major surgery. On the one hand, the days can’t go swiftly enough, as you want to have it all over and done with, and get back to normal life and hopefully health. On the other, they drag and drag with the apprehension about what it will be like, how long it will take to recover, what kind of after-effects you might have to face. (All helpfully described in the literature you’ve been given.) Even, whether the surgery will actually go ahead at all, when there are so many cancellations because of greater emergencies or staff shortages.

When you phone the day before (or 3 days before, if your surgery’s going to be on a Monday) to find out your admission time, it begins to feel very real and scary.

My surgeon phoned the day before to make sure I was happy about the procedure, and did I have any questions. That was nice. “Just come in a bit earlier if you can,” he said. So instead of checking in at 11 we arrived at 10, when I’d had nothing to eat since the previous evening, and no water to drink since 8 a.m. “Oh,” says the man at the desk, “he’s always doing that, he’s very keen.” So we still had to wait, not till 11 but till 12, because the procedure before mine had some complications.

Then I got to see the surgeon for last minute checks that what he was planning to do was what I had agreed and was expecting him to do, and to sign the consent form. Then, a little later, to meet the anaesthetist who attempted to put a canula in the back of my left hand. By then I was dehydrated enough that he couldn’t find a good enough vein and had to put another in my right hand. The scariest part was then having an oxygen mask placed over my nose, and panicking about not being able to breathe.

And I knew no more…

Until very drowsily I began to drift back to consciousness to find myself in the recovery room, with a nurse sitting next to my bed. I suppose he did things like ask me how I was feeling, take my blood pressure and stuff, but mostly I just hovered between being conscious and not. I think I remember saying Thank You to him quite a lot. This went on for a long time, and I didn’t have a watch and it was a while before I had my glasses on and could see where the clock was. I think he told me the operation had gone well and been successful. I don’t know how he really knew that, or even if it’s true, other than in the sense that I’m still alive.

Meanwhile Alison was phoning the ward asking how I was, and being told I was still in recovery (no explanation why) and getting more and more worried as time passed. Eventually she thought she’d come in and see me anyway, (though I’d assured her she didn’t need to), but when she looked outside, the car was frozen up and there was freezing fog, so she thought better of it. It was about 9 p.m. before I was taken to the ward, by which time I still didn’t feel like taking anything more nutritious than pain-killers and water. And so the first long night began.

Christmas morning came early. No idea when, it might even have been 2 or 4 a.m., when a doctor (I suppose?) came and relieved me of some blood. And then everyone’s saying stuff like “Happy Christmas! How are you feeling?” Urgh. At a more civilised hour a young woman doctor came and gave me a cursory examination, felt my abdomen, asked me to cough (a bit painful) I thought some food might go down nicely, since I hadn’t eaten for 36 hours. But even much later on, when they brought a roast turkey lunch (thoughtfully ordered by the man who’d occupied my bed the day before) I could barely swallow the smallest mouthful. Chew as I might, I couldn’t produce enough saliva to swallow, and could only get it down with a slug of water. Hours passed, slowly. They tried to get me sitting up, and standing up, but I felt dizzy and the nurse told me to sit down again. Eventually I made it to the toilet, holding on to the wall all the way, to try my first unattended leg bag draining.

My surgeon phoned, from the middle of his famil Christmas Day, to see how I was. He had visited me in the recovery room the day before, but I was still out of it. That felt like real service and commitment, too.

Nurse Ariana removed the drain from my side and covered the wound with a dressing, giving me more pain-killers and water as necessary, telling me about the disciplines I must follow in the coming days. How to empty the catheter bags. Fitting and use of the night bag. Keeping clean. Making sure I don’t become constipated. Wearing elastic stockings to help prevent deep vein thrombosis. Injecting myself daily with the anticoagulant dalteparin. This in particular was a real tutorial: description, part demonstration, then watching as I injected myself. I had thought I’d be asking Alison to do this for me, but under Ariana’s tutelage I resolved not to be a wimp, and become my own needleman.

Because it was Christmas Day, there was only one pharmacy working in the Trust, so we had to wait for our discharge drugs to be checked at one of the other hospitals and be transported over (by taxi?!) Then at about 3.45 p.m. I was released, and Alison drove me home at the end of possibly my Strangest Christmas Day Ever.

There’s lots to take in and learn and make sure you do. It’s likely to be uncomfortable, not altogether pleasant. But lots of other men have survived it all. And the care and professionalism of the people who are looking after you cannot be faulted. The documentation provided by my excellent hospital is very helpful, but one I’ve found on the Internet that’s even more helpful is the University College London Hospitals Discharge Information.

So, until further reports, just: THANK GOD FOR THE NHS. And thank god for the EU nationals, and other foreign nationals, who make it work.

Mind Tricks

Oh, the mind plays tricks, when you’re recovering from surgery, having uncomfortable, sleepless, or at least wakeful nights, constantly aware whenever you move or turn over of the catheter and the tube going down into the bucket that holds the night bag…

And in the moments of sleep, the dreams that come are dreams of strange anxieties, harping back to things that used to be major parts of your life, but now: well, not so much…

I dreamed I was taking a Holy Communion service for the nuns. In my pyjamas. Just when it was time to begin, I noticed that my catheter leg bag was full almost to bursting. With some difficulty I found the toilet at the far end of the dark cloister, but just as I was doing the business a family of about 27 tourists (including a dozen children) burst in…

Then I was half-awake for the longest time, reconstructing old proverbs. “If you rob one end of a person’s grave, you’re gonna have to rob the other.” OK, if you don’t like that one, let’s make it a party game or exam question: Complete this sentence: If you rob one end of a person’s grave…

Just the same last night. My anxiety dream was about conducting a wedding in a church I didn’t know, for a couple I’d never met. I arrived late and unprepared, just as all the other massed robed clergy (and why wasn’t one of them taking the service, anyway?) were already processing into church, and saying, “Come on, hurry up!” And when we got inside, I found myself in the AGM of something like the Esperanto Association of Britain, which went on and on, and I’m saying, “But what about the wedding? They won’t want to be waiting all this time, and anyway, I still don’t know who or even where the bride and groom are.”

Still, I must be getting a bit better. There weren’t any ghoulish proverbs last night.