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Taking Charge (8)

Eight
Privacy
Some years ago I realised that there is no privacy in this modern world. If you have the right skills you can go on the Internet and use your browser to find almost anyone of interest. If you are really clever, you will be able to find out any piece of information you need to know about them, and break through the majority of personal codes to gain access to really private material. So I suppose I should not have been surprised at the almost total lack of privacy in hospitals. In a sense it is part of the dehumanisation demanded by bureaucracies. If you are in any way ‘special’ or have special skills, or demand any rights, or try to ‘take charge’ or at least try to be part of the treating team, then you cause endless problems to the sweet running of ‘the system’. The system needs you to be relatively passive, to fit in, to do what you are told (because it is for your own good), and to behave. Part of this is that the system cannot have you being coy.
So questions like “Have you had your bowels open today?” are routine. Not the sort of thing you would ask your partner (or vice versa), but important for nurses to record in the notes. Of course they want more: “So just the once, or was it more than that?” No, just the once. “And what was the consistency, what was it like?” Well, just normal (trying to fend off further questions). “Well, was it formed?” Yes. “Hard or soft?” Well, a bit firm perhaps. “Hard or easy to pass?” Fairly easy (relieved, thinking this might be the last question; I mean surely there can’t be any more…). “And how many lumps?” (I ask you, did you ever think that as a routine you would have to look back down the toilet just to make sure you can answer this question every day?). It was not till somewhat later that I realised there is a scale! Woo-hoo! The Bristol Stool Scale! I quote from Wikipedia :
“The Bristol Stool Scale or Bristol Stool Chart is a medical aid designed to classify the form of human faeces into seven categories. Sometimes referred to in the UK as the "Meyers Scale," it was developed by Heaton at the University of Bristol and was first published in the Scandinavian Journal of Gastroenterology in 1997.[1] The form of the stool depends on the time it spends in the colon. The seven types of stool are:
Type 1: Separate hard lumps, like nuts (hard to pass)
Type 2: Sausage-shaped, but lumpy
Type 3: Like a sausage but with cracks on its surface
Type 4: Like an Italian sausage or snake, smooth and soft
Type 5: Soft blobs with clear-cut edges (passed easily)
Type 6: Fluffy pieces with ragged edges, a mushy stool
Type 7: Watery, no solid pieces. Entirely liquid
Types 1 and 2 indicate constipation, with 3 and 4 being the "ideal stools" especially the latter, as they are the easiest to pass, and 5–7 being further tending towards diarrhoea or urgency.”
So there’s a really useful piece of information for the next time you have to go into hospital. If you are really excited by this, you can go to Wikipedia where there is a really well illustrated visual chart of the seven types that you can download to adorn the walls of your bathroom to inform your children and visitors. In the spinal unit they had done this, and it played a crucial role in helping nurses to fill in their charts. “So, was it more like this (pointing at a yellowy brown mess) or this…?
In the early stages you don’t mind the loss of privacy; or if you do you just have to get on with it. Every bit of your body becomes an object to be looked at, tested and pried into, according to your particular problem. Routine measurements of temperature, pulse, blood pressure, and respiration are done several times a day, and will be done at times to suit the nurses, not withstanding that you may be in the middle of breakfast, or perhaps a conversation. If you can’t stand to shower, then you will need to have a bed bath if you have a need to keep clean. If you can’t get to the toilet, you may have to be helped to use a bottle or a bedpan in bed. 
As you will already know from the chapter on ‘Shit’, I had serious problems over the first few weeks anyway, and needed the nurses to not be coy. I was able to clean up mostly after toileting, but in those last moments getting into bed, the effort often caused trouble and I was always anxious to ensure I was clean. So I actually asked the nurse to check me (and if necessary clean me up and use pawpaw cream to avoid sores). I could not afford to be coy; I had to get past my embarrassment.
Another example related to having an indwelling urinary catheter for the first 4 weeks. However clean and careful you may be they get infected, and at the first sign of any temperature, or some discoloration or nasty smell in the ‘wee bag’, the first thing to do is to take it out and insert a fresh one. The other instance for a new IDC (as they are known) is after a trial of trying to be free of a catheter. This was discussed over several days before my resistance was overcome. Its not nice traipsing a wee bag all round the place, and trying to make sure the connectors don’t come undone. But, it is so easy. You can drink more fluids than you really need (which is great for the kidneys), and you don’t even have to worry about getting up at night. Anyway, with somewhat of a flourish the dirty deed was done, and a bottle was left slightly out of reach on the bed table – roughly in the spot they place your meals.
Try as you might, you just may not be able to pass urine into that bottle. Some people can do this sitting in bed, but I could not. I could not stand (which might have helped), and was really unstable trying to use my legs, even sitting on the side of the bed, so after several frustrating hours of this ‘trial’, and with an ultrasonically measured 800mls of residual urine in my bladder, we had to go to plan B – a new IDC for the next few days.
One of the delightful nurses from India had to do this for me with a colleague at 1am in the morning. I was in some pain with a bladder full to bursting, and almost at the weeping stage. So you don’t mind who does what to which bit of anatomy – although it is a strange process for a pretty young woman to have to do with an old man; grab a special part of you and gently but insistently stuff something down the middle. The nurse did the process under supervision, and I gained the distinct impression that she was not nervous because the patient was a doctor, she was nervous because it was the first time! Ah, we all remember those first times. But, hey, this was only the second time for me. Ultimately, with a bit of negotiation and anaesthetic cream, it went well, but I was too far gone anyway; just glad she managed, and my pain was instantly relieved.
Nurses waltz into the bathroom when you are on the toilet, and move bits of equipment around, or pick up clothes; it’s their hospital and their job, after all. 
So, I have finished my shower, cleaned my teeth, used my deodorant, and put on my clean top. I wheel myself back to my bed area covering my dignity with a towel draped artfully across my lap. On the way I am greeted by a bright young thing of a nurse who says “Good morning sunshine” (Chris can’t quite remember my name having been off for several days, and is involved in heavily sexualised banter with the much younger and currently bed-ridden resident of the spinal unit in the bed across from mine). “That’s the first time I have been called ‘sunshine’ in a long time”, I respond (hopefully somewhat gaily). I close the curtains around my area carefully, lie on top of the bed, and begin to use a special antiseptic healing gel to coat my groin area, which has not quite recovered from the nappies I had to wear some weeks ago. Banter over, bright young thing, wanders over my way, a pair of shod feet appear at the base of the curtain, and a peekaboo amount of curtain is pulled back to allow our nurse to observe my activity. “Are you decent?” Absolutely not, I reply - which does nothing in defence of my nudity. The curtain is fully retracted and our bright young thing just out of school waltzes in to use her keys on my drug drawer in the bedside cabinet. She discovers that it is unlocked because I have not taken any drugs in the mornings since admission to the unit. Taking charge and, at my vast age, not abashed at all, I continue with my routine, legs wide open, smoothing on the last of the creamy gel, and beginning to arch my back to put my underpants on. Nurse continues with her routine of questions about my absence of medication, and departs (rather sullenly I thought) shod feet scuffing at the floor to begin some banter with another vibrant young male in the bed next to mine.
They don’t give it a second thought. No matter what response you come up with to provide a bit of privacy, they just intrude and get on with their routine. I have had my blood pressure, oxygen saturation and pulse rate taken while finishing off my toast and marmalade. I have had blood taken while trying to type this book (one handed at that point of course), and have had doctors walk into the toilet to make a new appointment because you have upset their ward round by deigning to be sitting on the throne at the time they chose to arrive unannounced. You’re an object; the spinal in bed 56! The closest you get to being a person is being called by your first name by absolutely everyone, even if you have not been introduced. You lose all status, and are reduced to a dependent, in some cases a child.
It changes when someone else is present of course. You have status because there is another person there. So on many occasions, Jan was there with me, sitting on the side of the bed or in a chair drawn up to the side of the bed. “Oh, I am sorry, I didn’t know you had someone with you, I will come back later”. That is not true all the time, and seems to depend on status. So if it was the medical team visiting, then it did not matter how many others were in the room, they all had to empty out (except Jan), so that various examinations or discussions could take place. Usually it was only 5 minutes, and then visitors could come back.
There was one circumstance which changed everything, and that was when my son was in the room, giving me acupuncture. This happened on about 4 or so nights a week – particularly in the early weeks of my paralysis. As you will read in another chapter, acupuncture was a life-saver. So (in the absence of much other treatment) I really wanted it to happen. What was funny though (when I was not on my tummy with a back full of needles, and therefore unable to see) were the expressions on the faces of various staff. There would often be absolute horror briefly visible, and then they would turn tail and escape. You can understand perhaps the meal staff, but for nurses to react like that was odd. I wondered whether they were just visually affronted, or whether they had some ethical dilemma and felt they had to report what was going on. I had verbal permission for it to occur (behind closed doors or curtains of course!), but I often wondered what conversations might be going on at the nurses’ desk.
Actually sometimes you hear those conversations, and it may be embarrassing to learn about someone else’s life in glorious detail, when you have enough trouble looking after your own life and have no wish at all to overhear private conversations. 
You may be in the bathroom, and the nurses take the opportunity to change the bed linen, tidy up around the bed table and side cupboard. And of course they chat. Sometimes it is about their own private life and what did or did not happen last night. “Well, I said: ‘I am not doing that! I wouldn’t do that if you were paying me…’” was one conversation I overheard. “Anyway, you should have seen his face. He looked like a small child who’d been told off. Well he is a child, really…” (both nurses laughing). “Don’t know why I stay with him…”
There was always lots of discussion around the high points of last night’s television, or what some politician had said, or the latest scandal with a swimmer or cricketer. Sometimes there were snippets about conflicts in the system: “I told her months ago I couldn’t do any shifts in January, because my father was having an operation on his hip, and I was needed at home every day to help him and mum out. I don’t know whether she doesn’t listen, or whether she’s just a bitch.” Other nurse comments, and they both laugh. “Yeah, you’re right, but I’m not coming in… I don’t care what they do… They can stuff the job.” Other nurse comments: “She needs you more than you need her” “Yeah, dead right!”
Sometimes there are stories about fellow patient travellers on the ward: “He was expecting to go home this week. I feel so sorry for him. The size of that bed sore! I couldn’t believe it. There was nothing there last time I was on, and that was only about three days ago. I felt so uncomfortable having to tell him that he couldn’t go home until it was totally healed …. and also that he has to have bed rest for the next week. He was getting so mobile in that chair… He was so upset, and that father of his was furious; looking around for someone to blame…”
Most of the time it is prattle, and you kind of learn to turn a deaf ear. I have little interest in the latest gossip about some supposed starlet, or the sex life of one of the staff, and I tried hard not to listen in to conversations about other patients. It was easier when I was in a single room at the first hospital. I had not seen other patients, did not know any of them and, frankly, was so wrapped up in my own troubles that I barely noticed who was saying what to whom.
But at the spinal unit I was in a four-bedded ward, and the three other patients had been there much longer than I. All of them were trying to get home, in one case ‘trying to get a home’ from the council. They became people I knew, people whose stories I pieced together from what they said, what their visitors said, or what staff said about them. I knew all sorts of private facts about them. They became people about whom I cared, and for whom I had some respect given their persistence in the face of adversity.
So I began to think about their stories, and the urge to help was strong. I have been a therapist in one form or another for over 30 years, and a solution focused therapist for 15 years. I would listen, and almost immediately come up with some idea that might help, might make a change for the better. Hang on there a minute, I am a patient, and my sole task is to focus on my own recovery. Yes but… Somehow when you are working on other people’s problems, it makes your own less painful, or less important. But I was here to work hard at my own troubles…
This argument would go on in my head daily. There is a fine line between being positive in a social way: “I am sure the council has to come up with something eventually…” and being therapeutic: “Have you thought about…?” or “I think I know someone who might help there…” or “Did you ever read that book on… ?” Dilemmas every day. Ultimately, I had to pull back and become somewhat silent. I imagine this accentuated my difference – the age difference, my professional occupation difference, the fact my son was coming in a couple of time a week to give me ‘secret’ acupuncture. The other difference was becoming more obvious every day during those 4 weeks. I was quite rapidly becoming more mobile and more independent both in the gym during physio, but also on the ward around my bed. If I wanted to go to the toilet, then I transferred to my wheelchair and went off to the toilet. Two of the others could not do this. When it got to my using a walking frame, the difference became uncomfortable all round. I did not want to share each little triumph; it felt like gloating. I could tell from their comments that they were alternately pleased to see my progress, but disappointed and angry about their own status or relative lack of progress. I ended up being off the unit as much as I could and, while there, would work on the computer or read a book. I am sure they thought I was preoccupied or even surly at times, but I could not bear the arguments in my head around whether I should invade their privacy and become the therapist, translating what I had heard about them into something helpful; which would have been totally inappropriate. 
I went back three months after discharge for a follow-up with my consultant. I could not resist revisiting the room; I suppose a form of what psychoanalysts call ‘undoing’. None of those I shared the room with were there; others had taken their place. We all move on.