Well, having just closed down the last Post that was started during the last hospital visit, here I am back in hospital: ‘just when you thought it was all gone’ … back has come the ear infection.
So, I have writing time once again while I am stuck here, hooked up to a perfusion machine and ‘confined to my room’. But this time, instead of a ‘micro-observation’ of what goes on in this environment - we’ve had quite enough of that, thank you very much - I am going to try a written version of the ‘ink blot test’, lets call it ‘Rorasch Writing’ … and just write when an incident triggers a line of thought and/or turns the volume up on some thinking that is already in train.
Hospitals and their kind are very particular institutions. For a start they are all about being places where things are ‘done to you’ and where one has little choice in the matter, outside radical action which may be quite dangerous for oneself. So, if one is in hospital and fortunate enough not to be so ill or injured as to be ‘out of it’, then one’s conscious behaviour is on pretty high alert. As soon as I got here yesterday late afternoon, after quite a demanding time earlier in the afternoon at a hospital in Toulouse (I am back now in Albi Central Hospital) having chunks of my ear excavated, I immediately met a range of people: doctors, various nurses, auxiliary staff and had to listen very carefully to what they said/told me and had, basically, to do what I was told. In such a situation and context there is not a lot of opportunity or scope to ask questions - particularly as we had arrived late and it was staff changeover time and the doctor was also at the close of her ‘working day’ (even Dr Blank has downtime one assumes … ssshh!). After the first flurry of meetings, being shown the room, being told what will happen this evening and what one must do - and after having to say goodbye to my wife (I am never good at saying ‘goodbyes’, even in the most benign of circumstances) - I sit on the bed and have a few minutes to gather my thoughts.
And the thoughts that spring to mind are of occasions where one has had just a little bit of time to ‘adjust the persona’ before being ‘in action’: shall I be the slightly dotty English person, whose lack of language is annoying but who is sort of OK, because he’s very polite and quiet and maybe a bit plucky? Shall I be the entrepreneurial thinker, silent for the meeting but who will suddenly fill a silence with some wacky ideas? Shall I be shy and silent, but have just the suggestion of something else, flickering across the slightest of smiles? Or shall I just see how invisible I can be and hope no-one notices me, so there’ll be less effort involved? Oh no, I’ll be the one who stumbles over the mains lead of the heart monitoring equipment and tries to think of the French phrase for “Oops, I’m so sorry …”, when actually the English cod-translation “I’m desolated” feels nearer the truth.
From my last Post, you may recall my mentioning something about people not actually reading stuff - even when the ‘stuff’ was placed in front of them, was legible and pretty important (in your head, anyway). Well, I am so interested in this that I have continued to observe situations where it surfaces and to think further about it.
Last evening, a very pleasant nurse came to set up the perfusion machine that would manage the delivery of the antibiotics. It is a new machine, much smaller than the one I had last time and it can run on batteries, which makes movement far easier, not having to contend with mains leads. But it is also a ‘smart machine’, with a screen and lots of buttons. The screen, from what I could see, is very informative; and as is often the case is able to show the steps required to set everything up, error messages and generally instruct the user. The nurse explained that this was a new machine and, while she did so, she was intent on attaching it to a very ancient stand on wheels - so what the battery-managed machine gained in mobility was compromised by a very heavy, awkward to move stand. A wonderful metaphor stood before us. Anyway, having finally tightened the wing-nuts enough to prevent the machine falling to the ground and suffering brain damage, the nurse turned, a bit hot and bothered, to setting up the machine. Many buttons were pushed and the machine uttered benign noises and the screen displayed colours associated with things going well - nice greens and blues. But on the nurse pressing what seemed to be a final “Let’s go!” button, the machine uttered noises associated with discomfort and some annoyance. There was more button stabbing and while this incipient brawl took place I noticed that writing had appeared on the screen, together with some graphics - it seemed pretty clear that the problem was with the battery not being inserted correctly. But the screen was not looked at and more buttons were stabbed. The nurse took her glasses off, a sign to my mind that the brawl was escalating. As I was attached to the machine with some tubes, I did feel part of the situation and indeed I empathised with both parties involved in the struggle. Not speaking machine code, I reckoned speaking to the nurse might be the better bet (not always the correct choice, by the way), but I did not want to upset her - I think she was carrying some needles - so instead I made a show of peering at the screen and making the sort of noise that I reckoned had some universal meaning in an “Oh, that’s interesting ..” sort of way. And then she looked at the screen, paused, stabbed a few more buttons just to make a point and then adjusted the battery. The machine gave a cosy little bleep and started purring like a happy cat. “C'est un écran utile …” I risked and the nurse cast a glance at the screen, as she would some smart new girl in the school. I think she may have slapped it when my back was turned.
It has made me think how difficult it must be for designers of any equipment to work out how instructions for its use can be communicated. There was a time of course when we sought to find which way round the flange went, because if we got it wrong, it might necessitate the deconstruction of the entire kitchen. A time when if only we could see the diagram without the aid of that electron microscope while we had our South Korean dictionary in our other hand it would all be OK. This was also the time when it was an advantage not to look at any instructions. For trying to read the instructions paved the way for desolation, despair and marital breakdown. One just had to improvise - “it’s just a matter of getting this flange the right way round, no probs, and then the table will be ready for the buffet” - and then, slightly delayed, arrives the desolation, despair and marital breakdown and the washing down of the canapés-bestrewn buffet guests.
Of course, we are being told/will be told that this will be sorted out by Artificial Intelligence (AI). Already some of the instruction systems we’re seeing at ‘domestic level’ are impressive: I have just put together a mower, that had quite a few parts, with no problems, assisted by an excellent instructional ‘lesson’, delivered on high definition video that I could screen on my iPad. Goodness knows where professional and high level instructional programmes have now got to (yes, I know, it’s virtual reality - like IKEA on a Saturday afternoon). But of course if you are flying an airplane, or controlling a military drone, or conducting microsurgery with a team of dozens located around the globe, you will tend to pay attention. What is much more difficult is supplying information/instruction to less highly trained/motivated people in more day-to-day circumstances when the machines they are now using have a sophistication that would be science fiction to the ‘average user’ even a decade ago. I am using an iPad Air to write this, having just downloaded the new Operating System (OS 15.0, well 15.01 actually). I am just starting to become aware of what the iPad and its introduction of much more sophisticated AI is able to do - whether at my behest or seemingly ‘off its own bat’. The question it poses for me (and I am not drifting away from my comments above about ‘reading stuff’, honest) is whether we have reached a point in more or less ‘ordinary life’ (so, I’m not a brain surgeon or controlling a drone) where AI will be stepping in to fill the gap left by our inability and/or reluctance to ‘read stuff’ or ‘listen to stuff’ in any detail or for any length of time, and it will essentially do it for us. You can pose the suggestion that we saw the start of this when the likes of Amazon had suggestions for us of ‘what we might like’. Next step: “… and here’s what we’re going to do as you can’t be bothered to”.
So, are we entering a world where we are faced with machines that will make assumptions about what we want, then what we need and then what we’re going to get. And we may have a real struggle to contradict. Oh blimey! Just as we struggled as a child when we were told “Now, what you want is …..” and “You like those, don’t you …!” (It’s an exclamation mark, not a question mark). Oh whoops! The nurse has just arrived: “Now what you want is a nice breath of air, let’s open this window - Alexa! Open the window for Simon!!” - “Say a ‘thank you’ to Alexa, Simon - isn’t she clever?”. “She is, Nurse - she knows what I want when I don’t really … isn’t unconscious institutionalisation fun? It is fun, isn’t it, Alexa?”. “It certainly is, Simon. Now, I’m just buggering off to Mars, to help build another warehouse …. goodbye!”.
Because I have been writing about technology, AI etc, I am also thinking about ‘noise’. This is ‘noise’ in the sense of sounds, but also something much wider - it means anything which creates a blockage between a message source and its destination, so obstructing the process of coding and decoding information. This ‘blocking/obstruction’ can be anything - environmental, psychological, semantic, cultural etc etc. Ironically, digital technology that facilitator of communications, has also become the principal source of noise.
I’m thinking this because in one sense you would think that I am in a very ‘un-noisy’ environment - here in this small, single room. Yes, there is some traffic noise from the town and there are snatches of distant conversation - but there is little other obvious noise. However, thinking about it, my communication in writing this is compromised psychologically by my being aware a nurse may suddenly appear to ‘do something’ - about ten minutes ago three nurses appeared, for blood pressure, perfusion and pain relief medication checks and it completely interrupted my flow of thought (no bad thing, I hear you mutter). But more unobtrusively, I am surrounded by devices - two iPhones and an iPad, and a television on the wall - capable of delivering worlds of information, entertainment and distraction, and opportunities for me to interrupt whatever it is I am currently doing. It is a ‘background hum’, a presence that even when ‘switched off’ intrudes and promotes a sense of possible or actual hyperactivity where one is ‘always on’. What a comfort to be never alone, never disconnected; and what a curse to be always biddable.
In the ‘always on’, hyperactive world there are real dangers. Hyperactive noise disallows attention and focus. We are as yet unsure what psychological damage these new levels of ‘noise’ are wreaking. We can be more sure that the current ‘hyperactivity’ of the social and political scene in the UK, with BREXIT, the pandemic, fuel, food and labour shortages, is enabling a chronically chaotic Government to be successful in one area: and that is in gradually dismantling democracy and people’s rights and strengthening centralised power. The Bills currently on track - for the reform of judicial review, widening the scope of the Official Secrets Act, manipulating the effectiveness and role of the Electoral Commission, widening police powers, and hobbling Ofcom’s powers - are ingredients that are being assembled, largely unnoticed by a public deafened and distracted by ‘noise’. The Prime Minister may be a buffoon, but he is master of cacophonic drivel.
Communications technology is unique in its capacity to aid and abet ‘noise’, as well as to be ‘noise’ in its own right. We have not even begun to work out how to exercise control, to provide the ‘space’ to hear the important messages so that we can act on them and discard the junk. In Horizon Scanning work, one tries to identify signals of change and influence. Identifying the obvious, upfront stuff is not difficult - which is why strategic planning often just focusses on the loudest, most obvious messages. But one needs some ‘silence’, some calm, incisive attention, to hear and identify the ‘weak signals’ - the sounds that may be just over the horizon and that are very low key but that will be the issues that will arrive and show that they are the most important, the most influential and disruptive … the ones we should have listened out for, had it not been for the perpetual, bloody racket we’re bombarded with in the name of social media.
While I am attempting a ‘thought(s) riff’ (just had a bit of the old ‘noise’ - a nurse coming in give me an injection in the stomach to counteract blood-clotting … ah well, mustn’t grumble, it’s all for the best after all, and it looks like turning into a nice evening …) I want to link these thoughts on ‘noise’ and ‘weak signals’ with some thoughts on the role of intuition. I am a fan of ‘intuition’, but also very wary of it, as I think there’s a lot of stuff disguised as intuition that simply is not ‘it’. I cannot describe intuition, I cannot unpick its formula or DNA, but I feel ‘know when it’s there’. Or rather I know when it was there, because I have usually proceeded to ignore it, prior to it being shown to be accurate. I wish I did understand it. I can see links people might perceive between emotional intelligence and intuition; and between what people might call ‘sixth sense’ and intuition. But still it remains elusive. I had a true sense that I was watching someone with ‘high grade intuition’ when I watched documentary on a paramedic who worked in the Ambulance Service. Here was someone surrounded by ‘noise’ of all descriptions, and yet she seemed able to respond to the signals that people were sending out underneath all that noise in terms of what they really needed and would respond to. It was a remarkable ten minutes, watching her manage this double act - providing care and banter in various ways, each one appropriate to the circumstances and to the human being she was facing. Was it ‘intuition’ she was applying? I think it was. It was not in a job description. It was not referenced in any pay scale. But there it was.
I have written about customer service, social care (previous Blog Post’), about not reading (in ways including the printed page/screen and beyond, including ‘reading’ people and signals of all sorts) and being distracted by ‘noise’. I am beginning to feel that intuition has a key role in all this and that intuition spans nature and nurture, but that we live in a society hell bent on either trivialising or simply dismissing it.
And now I have just been distracted, or rather I have distracted myself, and come across a quote from Einstein:
"The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.”
No, let’s own up, I did not “come across it” I looked it up on Google.
Couldn’t help recounting something from an observation today: I don’t know whether it is a cultural thing here (in France, in Occitanie or perhaps just in the Department of the Tarn …), but it seems that a knock on the door is pretty much token … so, there is a knock, but in no time at all, and usually without a second
knock, or only a cursory one, in they walk. Here it is a nurse - one knock and straight in; and at home, our delightful neighbours (but also the home visit nurses we have been having), will give a knock or two and then in they will come. And one has mixed feelings: at home it is nice in a way that neighbours feel that relaxed …. but just occasionally one is a bit affronted and I find that fantasies start to populate the mind: what if one knew they were going to come, but a few minutes before arrival there was the chance to stage the most shocking ‘tableau’ that would confront them as they walked in and they would reel back in horror and amazement? But where would one find some nuns and a goat at that time of the morning?
“Right! That’s quite enough of that silliness, Simon - haven’t you got something sensible to be getting on with?”.
“OK nurse, I’ll make up some more Einstein quotes …”.
In December 2020 I had a small surgical procedure to remove a carcinoma from my left ear. It went well, but it turned out a piece of the stitching was left in. When I had this removed a small ‘button’ was also removed, further down the outside of the ear.
About a week later, while the original operation had cleared up well, the site of the small additional operation did not feel right and was starting to hurt. That was in January 2021. Since then, so five months ago, I have had 17 appointments with doctors and ‘laboratoires’. In early June I had surgery at a Toulouse hospital to take samples from the ear for analysis. After a further delay I was finally admitted to Centre Hospitalier Albi Central to treat the severe bacterial infection that had now been identified in Toulouse. For over four months I had had less than four hours sleep each night and was by now extremely concerned about the nature and ‘progress’ of the infection.
Tuesday June 15th 2021
I have been admitted to the hospital mid-afternoon and we (that is Nollie, my wife, and myself) go with the usual trepidation. We thought the arrangement might be for regular outpatients appointments - but it was explained (later) that as the bacteria involved is particularly resistant to antibiotics, it is necessary to monitor closely to check adverse reactions to the treatment. The amount of time I may be here is uncertain, but it looks like it might be a week or even longer. This has been a surprise and I find it difficult to take it in immediately. But after so many days and weeks of doctors’ appointments and journeys here and there it is strangely comforting to be staying put for a little while. I am sure very few people actually ‘like’ hospitals. I have something of a fear of them, possibly from early memories of tonsil removal (I was around four years old I think) and also, later, from seeing close friends dying in pain in hospital.
The hospital has a 60’s/70’s (which I suppose it is) feel. But, I have my own room, important for me as at present I do not feel up to being sociable and of course there would be the language issue. So, ‘hermit like’ I am relieved to have my own little shell. There is no hospital wifi for patients, which is a surprise and means I feel quite cut-off. Perhaps it will be salutary to re-experience a non-connected world for a bit.
The staff are pleasant enough and on arrival have not made me feel I am just ‘the English’. It is difficult to distinguish between staff’s ranks - but that becomes clearer by observing roles and deference behavior. In this ‘journal’ I am tending to just write of ‘nurses’ or ‘doctors’ - there are many more designations/roles, but it is too complicated to describe and ‘spot’ these as people come and go. My French (with Nollie’s back-up) is actually working fairly OK so far, and if I say I don’t understand or apologise for my clumsiness people are patient. Initially we have seen staff responsible for admissions and day-to-day practical issues; and then an intern comes in to ask a number of questions on background health etc. She is very earnest and intent on being thorough. We give her the detailed ‘chronologie’ we have written (in French) of what has happened since December. This takes her by surprise and, unlike some of the doctors so far, she appears to read it. But then she asks some questions that are already answered by the chronologie in front of her. This ‘reading but not reading’ has been a pattern throughout. It seems that the doctors/professionals involved do not like to read stuff, even if it answers the questions they are asking. We do not know why this is the case, but it has happened too many times during the past months to be a ‘one-off issue’. Anyway, eventually a senior doctor/consultant doctor in the Department appears. She is brusque and focused, speaks some English, and responds to my questions rapidly. But I quickly assess that she needs to portray she ‘takes no prisoners’ and the behaviour of the accompanying staff, including the intern, confirms that impression. She is surprised by the ‘chronologie’ and its detail. I feel a guilty but temporary ‘one-upmanship’ by having produced it … “I am not totally dim-witted you know!”. On reading the chronologie she asks why a particular drug has been administered twice, as it is wholly unsuitable for treatment of bacterial infection. She does so in a way that suggests it was me who made the decision …. but I do respond that perhaps she can explain it, as it was a doctor who did the prescribing. No answer, apart from a shrug. She tells us that the bacteria concerned is highly resistant to antibiotics and so various procedures will be tried and tested, so I will be in here for some days.
So, I am a bit shocked - but also pleased the whole thing is being taken seriously. And now the ‘mechanics’ of setting things up has to proceed. Nollie must leave now, and I find the sudden reality of that difficult, but have no way of expressing it. I am continually caught between the drive and need to “just get on with it” and the want to express emotion: “just get on with it” invariably wins - necessarily of course.
I am introduced to the perfusion (infusion) machine. It is not an old-fashioned drip, but a sort of pumping machine, run off the mains, with a battery back-up so you can get to the bathroom etc. I manage OK with the language during the set-up. When on battery, the machine emits a loud bleeping to remind you to plug it back in … good idea, but embarrassing as it ‘announces’ one’s every move. The tubes that are in place mean that I cannot now remove my shirt etc. No-one pointed this out. So I will have to sleep in my top-half clothing. As the perfusion machine’s tubes do not allow much movement washing etc is pretty constrained. I do my best. No towels or toiletries are provided, but that is OK …. I don’t want hotel accommodation, I just want things fixed and to get out. A nurse asks me about pain levels and whether the pain is ‘mal’. I make myself give a simple answer now and just say that it is ‘mal’. She wants to know “how mal?”. I have read the Hospital’s information booklet and their use of a ‘1 to 10’ system - so, I say it is about 6 or 7, thinking this would be regarded as fairly moderate. But they seem a bit shocked and say that I will be given paracetamol and codeine and if this does not work fully, then a small dose of morphine. I say to myself that this sounds attractive, as the pain over the past months has been ever-present and lately has dominated things, including sleep. I am brought my supper - basic, but perfectly OK, with some fish and carrot compote, and some cheese and a little cake. I don’t want ‘fine dining’ or any fuss. Then I have blood pressure and temperature taken again and the nurses say a ‘goodnight’ and say they hope I sleep well and to call if I have pain. I have some pain, but it is not too bad and the codoliprane (paracetamol/codeine) is working a bit. So by now I am feeling sleepy and very tired, and having negotiated the bathroom with the bleeping machine, I manage to get into bed, with the tube in the right place, so I can sleep on the ‘good ear side’. It is a bit tricky, but OK. I just want to sleep now. I am just drifting off when there is a knock at the door and a nurse comes in and says she will clean and dress the ear. It is the last thing I want done right now. But it looks like I have little choice. I say that it is better with only a very light dressing put in place, so there is minimum pressure on the ear, as it is very tender and painful and so that pus can come out. She appears to listen but then suddenly grabs the ear and the pain takes my breath away. I protest - she pauses and then takes my wrist and raises my hand to the ear. I do not know why. Then I understand she wants me to hold my hair out of the way. I try to do so, but cannot see what I am doing and she keeps on moving my hand that then knocks the ear. As she does this I can tell (by the sound) that she is undoing the packet of dressings and unzipping some plaster. I say that I am in a lot of pain. But she continues, and seems to get very cross as the dressing will not stay. I don’t know how to stop her. Then another nurse comes in and after a couple of seconds talking to each other she takes my head in a sort of headlock, while the first nurse tries another dressing. I try to protest but by this time the pain is such I think I am going to pass out. Then they let me go and say it is done. I am so shocked I cannot say anything and they leave. After a few minutes I look in the mirror. All that is on the ear and over the wound is a large piece of adhesive only sticking plaster, tightly in place. It hurts too much to do anything more and I go back to bed. It is 8.15pm. I lie awake as the pain washes around. I must have dozed for some minutes, but then I have to go to the bathroom because the pain makes me want to pee. The bleeping machine brings in a nurse after a few minutes - thank goodness it is a different nurse and she asks if I am OK. I say the pain is very bad and so she leaves and returns with a tiny tablet. It is the morphine. She says I must put it on my tongue, but no water. I just do that and will it to work. It takes what seems a long time - and it is quite a long time. But by 11.00pm I can feel something happen and the pain softens and while it does not disappear I drift into some sort of sleep and go in and out of that until about 3.30am. jBut then there is another knock on the door and another nurse comes in: I have to have the antibiotic bottle renewed in the machine. It takes a few minutes, but I am fully awake again now. She is kind enough and asks after the pain. I am too tired to explain much and she says I can have more tablets soon. I read and rest until around 6.00am and then I have to have blood pressure and temperature taken again. After this I know breakfast may arrive soon and so I decide to get up and wash and I recall reading about some woman traveller who, in tough circumstances, just emphasised her usual routines although she felt like doing otherwise.
erWednesday June 16th
So, it is now Wednesday June 16th. I have washed, shaved as best I can and have ‘got dressed’ and made the bed. I am sitting in my chair writing this. Another nurse, a new one, has come in and said that I may have my stitches out today … they will decide later. I decide to tell her that the dressing was very painful and I have removed it because it was too tight. She speaks some English and seems to understand what I have said. She does not appear surprised. Again, I make the request for a minimal dressing, with a ‘light touch’ to enable pus to get out. I worry at my own assertiveness … but it seems OK. Whether any notice will be taken we’ll see. But I will absolutely refuse to surrender to the procedure that occurred last evening. A cleaner comes in and seems amazed that I am up, with the bed made and things tidied. But I say “why not?” and she is friendly and has a laugh. I have some breakfast - a large bowl of coffee and a roll, with some jam and butter. It is fine, like a French cafe from 50 years ago. And I have had some more tablets. While the pain is still quite strong it is no-where near where it was earlier last night.
So, I wonder what today will bring? I think Dr B (the consultant) said I would have a blood test to see if things were kicking off in the right way. I do hope so. I am OK at the moment, but know that the strangeness of the last six months, together with other things that have occurred, will have to be made sense of, or at least ‘put to use’, in some positive way. I am looking for the energy for this.
I will continue this later today ……..
Well, it is 3.30pm, and during the morning I have had another visit from the ‘new nurse’. She is very communicative. She brings a morphine tablet and says to take it as it is evident that the pain overall is bad. She asks if Dr B has visited yet or if I have been given a time for that. When I say that neither has happened she does a mime of ‘swimming against the tide’. She says she will sort it out and she also repeats the idea about the stitches coming out. I check my phone and find messages from Nollie, that seem to have taken ages to ‘reach’ my phone … eventually I manage to phone her and she says she will visit this afternoon. This is lovely news, although I worry about her having to rush around. A few more nurses come in from time to time to check the perfusion and the pain levels and then it is lunchtime. It seems so early. Lunch is fine - simple enough, with pork in gravy and haricots and a salad, and some fruit compote. I do not feel hungry but know it is a good idea to eat. So I eat half. After lunch I have some more checks - there seem to be a lot of them. Then Dr B appears, with the intern, who stands silently behind her. Dr B asks how I am and how the pain is and says to ensure I get morphine as required. I do tell her that last evening’s wound dressing was very painful, but do not elaborate, beyond saying that very tight dressings are not a very good idea! The intern looks a bit surprised … whether by the fact that I have been forthright or by the idea of tight dressings I am not sure. But the good news is that Dr B says that the blood test results are very positive and will enable the second antibiotic, administered orally, to start tomorrow. She says that if they go OK I could be out by the end of the week, with arrangements for the perfusion and oral drug to be managed at home. I am very happy to hear this. She remains pretty deadpan, but I do discern a slight smile. And then she leaves. After about a quarter of an hour the ‘new nurse’, returns with equipment to take out the stitches and the first thing she does is use a spray to deaden the area. I ask her why could this not be used when dressings are changed, to lessen the pain. She says there is no reason and it should be done and says it is crazy if it is not done - and she says she will leave the spray bottle on the table so others administering dressings can see it and use it. She is about to start removal of the stitches when Nollie arrives - it is so good to see her. The stitches are removed with no problem and not much pain and a dressing with swabs are put in place without fuss or pain. I thank the nurse for her care and communication and tell her what a big difference it makes. So, why is there this level of contrast between administration of the same procedure? Like many things over the past months, it is a puzzle. After the nurse leaves Nollie says the wound looks far better, a marked improvement. Nollie and I discuss ideas about the nature of care and what affects and effects differences. It is so helpful to talk about this and to try to make some sense of things. Nollie leaves mid-afternoon. Her visit, the new nurse’s treatment, and the news about the efficacy of the antibiotic have made me feel much better. I could go to sleep now, but am making an effort to ‘save it’ until this evening. I must ensure that I am assertive enough to say ‘no’ to this evening’s wound dressing unless they use they use the anesthetic spray and a light dressing. But I do need a rest now and will write more this evening.
A bit later I get a phonecall on my mobile, but cannot reach it. It then bleeps to say a message has been left. I check this. It is ‘Emilie’ who says she is Dr B’s assistant and will be organising my going home on Friday. That sounds great, but I am puzzled why she is ‘phoning if she is the assistant of the doctor who is in the Department and whom I saw a couple of hours ago. She must be located somewhere else. Anyway, I call her and she is very pleasant and speaks good English. She needs to know if we have a nurse who can come to our home; can I give her the ‘phone number; and also what is the number of the pharmacy in Tanus and what is our home address? She says that she will visit our home on Friday afternoon to brief us on all the procedures and will also brief the ‘infirmerie’ (the home visit nurse); and also that a colleague will visit me in the hospital on Friday morning to brief me (I am not clear how this will be different from the briefing at home - anyway!). I send her a text message with all the information and she replies immediately saying that is all ‘impeccable’. So, this sounds promisingly efficient and sort of implies that the decision regarding Friday has been made, in advance of the monitoring of the oral antibiotic. But in truth I know that it just has to be put in place well in advance and if the oral antibiotic does not go well then the Friday arrangements will be pulled. ‘Fingers crossed’!
At about 6.00pm the perfusion machine makes a different ‘bleep’ and I see from the LEDs that the antibiotic is finished. So, I call for a nurse. Someone who I think was an auxillary comes in and I point out the finished bottle. She says she will get someone. I wait about 20 minutes, not sure if I should call again, which I do. The nurse from last evening’s painful wound dressing episode appears. Oh good. I point out the machine and she says to me that it needs changing. She says it in a manner that implies I should have done something. So I say that I had rung the caller bell and the member of staff who came said someone else would come. The nurse says “I was downstairs”. Oh, OK then. She replaces the antibiotic supply and also connects what I take to be a saline drip into the catheter in my arm. I had not had these together since the first day. She also administers an injection in my stomach, like last evening, for the plebitus. She gives me a little tray of pills, the codoliprane to take before supper and two others to take after, including a morphine and she says that supper will come soon and then leaves. Supper arrives soon after and again there was a fuss about where to put the tray. I say it is fine on the table in front of me, but it is as if I have not spoken. There is much fiddling with the cable and tubes from the perfusion machine, and the tray of pills fell to the floor so the pills are scattered under the bed. Finally I get them them just to stop and put the tray down and I will sort it. Supper is not so good tonight … some beef kidneys that I cannot not bring myself to eat. Too near the knuckle or something. So, I have some soup and some apple compote. It is enough. I am not hungry. Before I started to eat I looked for my water - in the ‘fiddling’ it had been moved to the other side of the room and so I take the tablets with the remains of the soup. When the nurse comes in to remove the tray I ask for the water and point out that I cannot not reach it as I am ‘double cabled-up’. This seems to annoy her. I think she is easily irritated. She plonks the water down and leaves. There is no way she is doing any wound dressing for me this evening! How strange it is the little things that disturb one. As I said, I was feeling much more upbeat and confident, but this little episode disquiets me. Foolish really, but the disquiet ‘arrives’ before one can set up defense against it. As I write this I note that the saline drip bottle has emptied and I don’t know whether I should notify someone. There is a distinct change in the ‘feel’ of the place after the daytime staff have gone. I wonder if this a common thing. Are night staff different in some way? They do seem more ‘robotic’ somehow and simply don’t listen much - they just plough on with the ‘stated task’. Perhaps that is being unfair. Perhaps their terms of employment are very different? Perhaps one is just running into a few particular personalities?
And as I write this the nurse arrives … she has remembered the timing on the saline drip and she removes it. I watch her closely. She is not naturally adroit, and has a clumsiness that is related to her irritability. They work in tandem. I steel myself for her to say something about the wound dressing and I have my response prepared. But she just says ‘goodnight’ and I gather that ‘that is that’. Perhaps my comments via this morning’s nurse have got back in some way. Let’s hope so. Anyway, although it only about 9.00pm I find that I am very tired and I am going to prepare for bed. I suppose I have been awake a long time, since 5.00am or so, with not much sleep before that anyway. I wonder what it will be like to have a full night’s sleep again, after over five months of four hours or so a night maximum? Strange thing to look forward to sleep … sometimes I used to think of it as a waste of time.
Thursday June 17th
It is Thursday June 17th and I have been awake since 5.30am when the nurses came in to change the perfusion supply. Last night I slept from 11.00pm to 3.00am - four hours straight for the first time in a long period. So that was very good. The pain had gone down and that made all the difference. I did not have a further morphine tablet during the night - but now the pain is back, so I may ask for some treatment again. But the pain is different and duller, with fewer of the sharp jabs that make my head jerk. It is 7.00am now. I got up at about 6.00am and tried to have a good wash, ignoring the bleeping of the perfusion machine. I make the bed and ‘tidy up’, like yesterday. And then I try to do some exercise, as I realise how I am completely unused to not being ‘on the move’ so much. At the end of the exercise a nurse appears to do the usual tests and I try to make conversation - saying how the weather has changed (it looks grey and dull outside, a complete change from the 35 degree sunshine of the previous days). She shows me the blood pressure result, which I think is a little high, so I decide to say that I have been taking a little exercise. She looks at me as if I am mad. Perhaps she is unused to patients chatting to her at this time of the morning or perhaps she has been warned that this crazy English person says very strange things and to try to take no notice. She is perfectly pleasant, but just looks a bit amazed. So, now I am awaiting breakfast and writing this I realise that again I am not the slightest bit hungry (I always spell ‘hungry’ as ‘hungary’, putting in the extra syllable, which is how I say it, just as I say ‘filum’ instead of ‘film’). Anyway, some coffee would be nice, but a large, crusty roll and jam does not appeal - how fussy one is! But I now see that in my case appetite is firmly linked with physical activity and I cannot imagine consuming a couple of thousand calories without charging around quite a lot. I wonder what today will bring - they are trying out the oral antibiotic and seeing how it affects the stomach, so I am hoping that will all go OK. But I worry that with taking no exercise and the change of diet my stomach may not behave itself. It will not give the doctor much time to make the decision on release and treatment at home from tomorrow, so I am considering how swiftly the response to the oral antibiotic is! I hope it is not on some sort of ‘Exorcist scale’! As I write I can hear lots of voices outside the door, with staff preparing for the day … and as I write this, right now, the morning nurse comes in again and asks what I want for breakfast. Inevitably a silly answer enters my head, with fantasies of sliced white peaches, featherlight omelets, and tiny Greek cakes, dripping with honey …. but I of course just say ‘cafe s’il vous plait’. Today I am offered ‘biscottes ou pain’ and, with a silly joke about ‘pain’ entering my head, I quickly ask for the ‘biscottes’. I am brought breakfast and the pills … the usual painkillers, that I could now do with, and the nurse says the other pill is the oral antibiotic. I note the name of that, so I can read up on it … and I then realise that I had these yesterday, but did not pick it up because there quite a lot of pills and I don’t recall anyone telling me (I may well be mistaken on this, as I have been quite ‘addled’). So, we will see how the oral antibiotic goes. I notice that I can now see the label on the prefusion bottle (usually it is hidden from view) and I note the name so, again, I can brief myself. I find that the NICE site in the UK is excellent for this sort of information, because of course it is ‘straight information’ unlike so many search results. It is an obvious thing to say nowadays, but Internet searches on health issues are really hazardous (some irony there somewhere) - I looked up one of my antibiotics and one result, on page one of the Google results, informed me that it was a ‘killer antibiotic’ and very dangerous and should not be used. The site giving this information looked, to all appearances, a professional research site … which, of course, it wasn’t.
As I have been writing this, and also just ‘sitting here’, I have been thinking about how indistinct our language is (and I mean language in general, whether it is English, French or whatever). Or perhaps it is just my use of language! Anyway, this is because I was thinking of the word ‘care’, or ‘soins’ in French etc etc. If we say something about ‘care’: “I care for you”, or “our system delivers the finest care”; or “we care deeply about our residents” I am not sure that we truly understand what ‘care’ means … it has become ‘one of those words’. It is totemic, but the particular quality or concept it is meant to convey and represent has been entirely dissolved by overuse. It is a ‘must have’ for any service providers’ (ugh!), used as a catch-all assurance about motive and intent. Our banks ‘care for us’, our local authorities ‘care for us’, as do our burger takeaways, the purveyors of hair products and the places that look after our pets, our children and our cars. It is a linguistic emoji, convenient and meaningless. So how can we manage to focus our thinking about what ‘care’ might truly mean when the use of the word is so careless and cynical? Sometimes life’s events strip ordinary, everyday ‘practice’ and ‘living’ down to some bare bones. This has been true of COVID. ‘Normality’ has, we are told, disappeared, put on hold. People are desperate to “return to normality”. Dig a little deeper and ask people to describe what is their ‘normality’ that is so suddenly prized, but that they often seem so keen to escape from, with holidays and ‘breaks’. It is a muddle, a contradiction, more slippery and opaque the more one examines it. But for the unfortunate person catching COVID and in hospital, in isolation, incommunicado, subjected to procedures they cannot follow or understand, suddenly the meaning of ‘care’ becomes the only issue, now that they are really robbed of ‘normality’. Being ‘sentient’ in this situation changes and is recalibrated - the slightest gesture from someone towards the isolated, defenceless person can be hugely affecting, for good or ill; a glimpse of the ‘natural world’ can reassure in a way that all the corporate communications will never manage; a confirmation of another person’s empathy can act as an antibiotic to the feelings of loneliness and despair.
As I write this I suddenly have a thought that our concern for care is now characterised by being an afterthought. In the corner of my eye I am looking at a hospital brochure that is asking me to let the organisation know what has been my experience of their care. I think I am being asked to then have my response data used to measure against some metric that they have already decided. They have already decided what ‘care’ must be. What they are doing is seeing whether they are measuring up to their own ideas about the experience of care. I realise that much of the ‘strategic thinking’, ‘operational planning’ and ‘corporate practice’ involves a core of afterthought, a check to see if what has already passed was actually OK. OK not for the person who has received the ‘care’ but for the organistion’s version of the person who received the care. The attention is being paid after the event and its result will be what informs the opening position of future transactions. So, reverse the model. How about placing the emphasis on the start of the ‘caring transaction’? How about entering the ‘caring transaction’ with the idea and disposition that each transaction is a new beginning and you have to manage it by looking, listening and responding to what is being presented, rather than applying a preformed set of ideas and rules regarding what is appropriate and meaningful? In the past 72 hours I have observed these thoughts being played out. I have been subject to people delivering ‘care’ regardless of who I am, what I say and my information on what I need. And I have been subject to people who have ‘noticed’ and acknowledged me and have adjusted their rules and behaviour accordingly, as far as they can and as far as their time and ‘pay grade’ permits. I go back to the earlier strand of thinking: COVID stripped off normalities for both the patient and the provider of care. What matters in that situation? What counts? Who decides what is possible and what is important? Of course I have no idea. I think it needs an understanding of how disruption of ‘normality’ can be disastrous while at the same time delivering insights into what really matters and works when it comes to ‘care’. And the worst scenario is that we return to ‘normality’. That we flop back, exhausted, in some cases desolated by loss and the experiences we have encountered. We flop back to ‘ideas’ about care that have been formed by corporatisation and political trade wars and the soggy detritus about how “we’re worth it” and “because we care”. We need people who understand how to develop the services and organisations that can behave caringly. Whose focus is not ‘care’ as if it were a deliverable emanating from some warehouse, but who can build human and material structures that make care in practice possible. These ‘structures’ operate at micro, cellular level as well as regional, national and international level. Their growth must be uninterrupted by short-term political systems and entirely inappropriate party politics and ideology. Imagine if the science and scientific communities that have developed and integrated their ongoing scientific research into the COVID vaccines had been wholly subject to political ideology. For the ‘ordinary person’ - those people and families who may have lost someone to the pandemic, those who may have lost their jobs and/or have needed to look for new jobs, those who have been working in health and social care, those who work in corporates but who are not really involved in any organisational development. What do they do with the experience and aftermath of COVID? How will their ideas about ‘care’ be further formed when they recall the ‘care’ they may have witnessed and experienced? Again, I have no idea. But what if there was some ‘space’ for them to think about their awareness of what ‘care’ really looks like, how it feels and to use that awareness to question and inform any provision of care they come across?
So, I have sat here for the last hour or so writing this. I have no ‘pulling power’ to apply any ideas about ‘care’. I can fill in their hospital ‘patient experience’ form, but I will not do so. I will write a letter and relay observations to someone about my time here, and what was ‘care’ and what was not - in my view. And I will say directly to a few people that their ‘care’ made a positive difference to my stay - for else how are they to know?
A lovely irony: another, new, nurse has appeared and introduces herself. She looks about eighteen years old. She says she is studying to be a nurse. And she gives me a pill that she says is for my ear. So, I try to narrow that down a bit and ask whether it is another one of the oral antibiotics, but she does not follow (my pronunciation I expect) - so I just take the pill from her and ask whether it is to be taken with or without water. She says without water and then says that she will be back to dress the ear wound … umm! It’s good for her to practice, no doubt … but, rather uncharitably, I wish it was not on me. So, I must be very polite but, again, quite assertive. I wonder how she is trained to listen to and to ‘read’ patients’ body language? It would be so interesting to follow how medical students are trained in France (or anywhere for that matter). Do they train for communication skills in all its forms? Do they train differently for different staff hierarchies? Do they train for medical staff to patient communications but also medical staff to medical staff communications?
Now, each time I follow a new train of thought another medical staff member knocks on the door and appears. It is like a piece of theatre. It’s a new Michael Frayn. They are wonderfully on cue. I am beginning not to able to keep up. It is like some ‘documentary version’ of flow of consciousness writing. Anyway, the member of staff responsible for cleaning the room now comes. She is the same one as came yesterday. She is very polite and very quiet. She is of mixed race. Again, I make a point of speaking with her and mention the weather and ask if it will rain and she thinks it will. I say that is good for vegetable gardens and, as yesterday, she laughs politely. I make a point of moving the trolley and perfusion machine so she can clean underneath. She wishes me ‘bon courage’ and thanks me and on her exit three nurses brush by her. They don’t acknowledge her in any way - any more than they would talk to her cleaning utensils.
And then enter stage left: the trainee nurse returns. She proceeds with the ear dressing. She is very careful and checks about every ten seconds, saying how important it is to check for pain! I tell her that that knowledge is not always been applied, but that it is nice when it is. She says she is in her third and final year of training and that COVID has made studying very difficult. She finishes the dressing and there has been very little pain and I thank her. As this is happening Dr B and the intern appear. They do not acknowledge the trainee nurse at all. She has to back out of the way as she is in the middle of clearing up her equipment. It seems that people junior in rank just don’t exist. However, to me Dr B is much more cheerful and she actually smiles. I relay information that the ear is feeling much better and the pain has reduced. She asks me if the oral antibiotic is having bad effects, but I say none so far. She seems quite surprised but is clearly very pleased. She says that there will be a blood test early tomorrow and if that is OK then I can go home. I say that is great and tell her that her assistant, Emilie, called to make arrangements to brief Sophie the nurse at Tanus and to meet us at home to go through procedures. Dr B looks totally blank. I repeat the name. Still blank. Feeling a bit helpless again (I was fine, feeling my French was getting a lot better) and then realise that Emilie’s text message, with her job title and Dr B’s name, is on my mobile. I show Dr B. She looks blank. She then says that Amandine will see me on Friday morning to brief me here at the hospital. I say that Emilie told me that. Dr B looks blank (she is really very good at this). Perhaps Emilie does not exist and when I look at my mobile again the message will not be there. Perhaps that morphine was much stronger than I thought. Dr B then turns to the trainee and asks her what she is doing (she could reply that she is standing there feeling daft because she’s been sidelined) and she explains she was dressing the ear. I say that she was very careful and there was no pain. Dr B looks blank. I wonder what I could say to elicit a reaction - “Oh, je penser mon autre oreille a juste tombé de!”. Perhaps not, she still has the full pack of cards. Dr B suddenly smiles again; I smile; the intern smiles; and the trainee smiles. One could sunbathe in the room. Dr B, still smiling, says goodbye and she will see me tomorrow. “Excellent” I say …. my French is not up to “I look forward to that and we’ll see who smiles first”. They all leave, but the trainee returns with some painkillers …. I would like to say “are those for seeing Dr B?” - but I don’t have the courage or, of course, the French.
I seem to have seen a lot of people this morning and now quite tired. I realise that lunch will be here soon - perhaps it will be a cold meat salad, seems appropriate. I’m being unfair just to ‘riff’ a joke - Dr B’s diagnosis and course of treatment are working really well and it is a huge relief, so I have very good reason to be extremely grateful after the five months of dithering and delay.
Lunch was not very appetising, so I ate only the salad and a banana … again, no problem really as I am not too hungry. The nurse gives me some more painkillers, which I take as the pain is starting up a bit, and I have the oral antibiotic. After lunch I actually have a short sleep … it’s great that I can, without the severe, nagging pain. But, of course, I am woken up by another nurse visit after 20 minutes, to check I am OK … which is sort of comforting and annoying at the same time. So, I start reading - this time a Somerset Maugham short story, set in a sanatorium for TB patients. I had forgotten what an acute observer of human behaviour he was. After half an hour my blood pressure is taken … good result again. The ‘good results’ are stacking up, so that is very encouraging. And then Nollie arrives - and that is the best tonic I could have. We have a really interesting chat. She tells me that our sons have been in contact. I really look forward to a chat with them too. And after she leaves the nurse arrives to change the perfusion bottle and give me the injection for plebitus; she also brings yet more painkillers and the next oral antibiotic tablet. They seem to come around at a slightly alarming rate! So, back now to some reading and I await supper. As I look out the window, the sky is going jet black and I receive a message from the bank (yes, those ‘caring banks’) on my mobile that there will be severe storms tonight. But why is the bank telling this? Perhaps it cares so much it is truly worried about my newly planted vegetables and that the heavy rain will damage them. Could I then make a claim for ‘damaged vegetables’ and they would be liable? Are ‘vulnerable vegetables’ covered by our House Insurance - if not I must do a Google search on assurance companies that are sufficiently caring to worry about their clients’ vegetables? Goodness me, the work of a Bank Client Relations and Care Operative must be so wide-ranging and demanding - how can that training have prepared them adequately? Staring out at high-rise walls and a bit of sky, with no sight of anything else, is a very different experience of ‘weather’ than being at home.
Supper has arrived. Again the nurse starts the ‘dance’ of moving all the furniture and so I just say “Stop! It’s fine thank you” and lo and behold she stops. It is a lot more effective than the “I say please don’t bother with moving stuff ….”. My assertiveness guilt has reduced. Perhaps if I stayed another week I could lead France to glory. Perhaps not, too tall. So, am writing this now, looking at but not hearing the heavy rain. And hoping that tomorrow’s blood test and the effects of the oral antibiotic will be such that I can get home. Apart from anything else I really need to know if Emilie really exists. And I need to check if parsnips are covered by the house policy, or subject to a special ‘supplement’ which I have neglected to pay.
Friday June 18th
It is Friday June 18th. Not such a good night last night - a lot of noise, with someone talking on their mobile phone for about four hours; and all sorts of biffing and banging that sounded like renovation work was in progress. At about 11.00pm a nurse appeared to ask if things are OK. I decide to just ask for a morphine tablet (they did not offer one earlier, as they have been doing). She brings one, which is good. She says she hopes I sleep well. Twenty minutes later she returns, with the lights coming into the room. She asks me if I am OK. I say that I had a really good sleep and twenty minutes always sets me up for whatever the day demands … no, of course I don’t. I think about the nature of ‘routine’ asnd how sometimes the actions within a routine can be random: sometimes there will be a wound dressing before supper, sometimes not; sometimes a painkiller will be offered, sometimes not. I then realise that there are no patient notes at all in the room. I do not understand how successive staff can pick up what has been the sequence of events/provision or how they are briefed regarding advice on drug provision. Perhaps there is lots of paperwork just outside the door.
After about half an hour I do feel the morphine’s effects and by 1.00am I am drifting in and out of sleep and then I go completely asleep. At what seems just a bit later there is a knock (no wait for response) and the lights go on. It is 4.00am and time to change and the prefusion supply. I am wide awake again. I read for a little bit and then doze. But by 5.30am I know that nurses will start to arrive. So, I get up and have a shave and a wash. Sure enough, there is a knock at the door and a nurse arrives to take the blood test that will decide whether things are progressing well and I can get home for the ‘at home’ treatment. They can do a dozen blood tests, it’s fine so long as the results are good! Shortly afterwards another nurse arrives to do the usual blood pressure and temperature routines. She sticks the thermometer quite hard in my ear. It is the bad ear. I squawk and point to the other ear. She puts it in the other ear. Not a flicker. I expect Van Gogh had this problem when looking for somewhere to pop a paintbrush. Another nurse arrives and asks me how I am. She does not wait for the response, but says that my dressing is not on the ear. That is a great phrase to include in the French:English phrasebook. It could be deep code. I say it has fallen off (I have prepared the phrase). She says nothing. She has been trained by Dr B. I should have prepared a better phrase: “Je ensemble feu à lui dans le nuit ainsi je pouvais lire mieux”. I think I have spotted another ‘behavioral theme’: the question and response transactions are very often not related to any subsequent action. Maybe asking the question is enough. Maybe the training says ‘to ask about such and such’ - it doesn’t say to actually do anything about it. The patient satisfaction questionnaire can ask “were you asked lots of questions?” … “yes, lots of questions” … “excellent - we have a high score on that then”. It’s like an Amazon review: “how was the item you ordered?” … “it was excellent, the packaging was perfect and all delivered on time”.
The ‘thermometer in the ear nurse’ returns and says something that I don’t catch. She leans over and repeats it loudly in my bad ear. “Sorry, can’t hear you, there’s a thermometer in my ear”. She says it again, more loudly. I still don’t catch it. Maybe it was “vous penser vous sont drôle hein? Avec votre stupide jeux de mots?” She gives up but then asks if I would like breakfast. “Yes please, I would like pain with my pain”. She is back five minutes later. There is coffee on the tray, a plastic container of butter and one of jam. No bread and no sugar. Oh goodness! She can read my mind and heard the ‘pain joke’. She is back in ten minutes, holding a bread roll. It strikes me that I don’t know where her hand has been the meantime.
I have had my coffee, and I have been writing this and trying to be lightweight - but I am anxious about the blood test results. I want very much to get home and manage the process there. I really don’t want another night here - the days are OK, but the nights are a strange world.
So, where is my mind going now? For some reason I am thinking about Artificial Intelligence. We know that diagnostic procedures are well-advanced using AI. We’ve seen the usual press coverage of little robots in Japan working in Residential Homes. It’s 2040 - is that a human carer or just a malfunctioning robot? We know already that algorithms already have built-in bias, because of the humans who have coded them. Will the algorithms that code the algorithms build in their bias? Will there be a ‘nature:nurture’ aspect to AI development? It makes sense that we can code an AI system that could manage a caring material environment, but could we code one to deliver ‘care’? Or could we make ‘care’ a baseline constituent in all AI:Human interaction in some way? How would that be developed and coded? Would it involve the development of behavioural factors, with a discipline and validity process like some breathtakingly advanced psychometric? Would this have a strong relationship with ethics? Is it on the way to AI ‘Being Human’?
My thoughts have been interrupted by a nurse appearing to tell me that I will be going home today and that Dr B will be in to see me very soon.
…. to be continued
NOTE: I have decided to end this Post, as on returning home and receiving the ‘à domicile’ care it is clear that I cannot write in the same way, as the people I would be referring to would be easily recognised by folk who may read the Blog and I don’t think this a good idea. However I will be writing a new Post about my experiences more generally very soon!