Thursday, 26 July 2012

Home Again - No Ifs, No Butt

After last week’s tangential leap into the present for the never-before-seen blog synchronisation/swimming experiment, it’s back to business as usual, and a quick fade into the past to keep the original chronology of my story going.  I’d just had a very long, drawn out escape from the hospital, you may recall, and was finally allowed home.

It was over.  No more nurses, good or bad, ministering to me (or not); no more other people’s smells; no more inedible food or unbearable hags hurling abuse at me.  No more drips, no more doctors, no more NHS care 24/7.  Just home comforts, home cooking and chocolate straight from the fridge.  I didn’t have access to a fridge in hospital, and I’m not a fan of room temperature chocolate. You’d think I’d be happy.  Not just happy, elated; over the moon; free at last.  With a husband and a teen who loved me looking after my every need – though I wasn’t going to ask either of them to check my butt wound.

The thing is, being in hospital and feeling more than well enough to go home, and actually being at home are two different things.  When you first get home, you are indeed elated and over the moon and all that stuff.  Hospital doesn’t just depersonalitize you; it institutionalises you as well; even if you’re only there for a short while.  At least it does that to me.  So that when I get home, when I walk into my bedroom and see my own bed for the first time, there’s a part of me that feels like breaking down and sobbing; like I wasn’t quite sure I’d ever see these things again.  Like for a while it had seemed as if I’d never again snuggle down in my own duvet, watch my own telly with the cat on my lap, knock over my own drink on my own bedside table.  And that can make a person feel emotional. 

I was feeling emotional as I got in my lovely, firm, familiar bed and settled against the mountain of cushions husband had created for me to lean against.  As he and teen made sure I had everything I needed – drink, chocolate, remote control – I felt truly happy to be home.  And then that wore off and I felt other things.  Pain was first.  My butt wound was agony.  It was bound to be, I suppose; you can’t have your anus sewn up and not feel a thing, but somehow it was hurting more now than it had for days.  I swigged a couple of big gulps of liquid morphine and decided I really didn’t like it.  I phoned my GP to tell her I was home and to ask if I could swap her my bottles of liquid morphine for a pethidine prescription; I like pethidine better.  They didn’t use it in the hospital, but I was damn well going to use it at home.  I was no longer under their control.  I could do what I liked.  And what I liked was pethidine over liquid morphine.  She said yes, and promised to come over after surgery closed.  I missed my adventure bed, I realised – the pumping up and deflating cushiony element of it really had helped my butt, it turned out.  I’d heard about a thing called a pressure cushion, which was supposed to be comfortable in such situations, but I felt pretty sure I wasn’t going to be in pain for that long, and they’re not cheap.  Husband offered to go out and buy me one, but I declined.  I’d been told that in 27% of Crohn’s patients who had this particular surgery, the butt wound would take a long time to heal.  ‘Crohn’s bum’ was what my surgeon had called this particular phenomenon (he likes to talk in a language his patients can understand). But I wasn’t going to be one of them, I’d decided.  Things that happen to 27% of patients don’t happen to me; things that happen to 3 or 4% of patients do.  I was safe from this particular bullet.  I wasn’t going to be in pain long enough to need a cushion.  I was still wearing a padded dressing; the pain was terrible, and the wound bled a fair bit and wept a lot.  It wept like it didn’t want to be a Barbie butt, and the bleeding wasn’t exactly rivers of blood, but when I undressed and walked across the bathroom to get in the shower, it did look like something very small had been brutally murdered on the lino. I did know, though, that this would pass.  Post-operative stuff always passes; I’d had plenty of experience in this area.  Not the anal area; the post-operative area.  The anal area issues were new to me.  Really new.

Coming home with a bag had been an odd thing – weird, daunting, scary, but also kind of exciting.  I was entering a brave new world, with no more pain and alternative defecation arrangements.  There was lots to learn, plenty to get used to, and a new life to be lived.  Coming home without an arsehole was just plain weird.  Suddenly I was seeing references to the ubiquity of the arsehole everywhere:

‘Opinions are like arseholes; everybody’s got one.’  Well no, actually, not everybody.  I haven’t.

‘Everyone with an arsehole knows …’ I haven’t got an arsehole; I know (whatever fact it was that came after this preface – I always did know, because it was always something obvious, hence the use of the arsehole reference).

‘I need that like I need another hole in my arse and I’ve got one of those already’

Okay, perhaps I don’t always follow the most original people on Twitter and some of my facebook friends may have moments when they’re less than usually imaginative in their verbiage, but really I saw all of these things in a short time in those places, and I was just learning that I don’t need any holes in my arse.  Not one, and not another one.  I suppose such crass observations had always been there, but like a woman who isn’t pregnant, and doesn’t want to be, doesn’t really see the newborns that are constantly pushed down north London high streets, I hadn’t noticed people comparing thoughts to arseholes and thinking they were making an important/relevant/witty point. 

The bag had seemed like a secret not many people knew about when I first came home with it.  Before I started writing about it on a weekly basis and trying to get as many people to read and learn about bags in general, and my experience in particular, that is.  Until then, it felt like a secret.  It still does when I go out and am amongst strangers; like I’ve got something huge going on that none of them know about.  That’s on the days when I’m not wearing my ‘I’m a Baglady and my bag has poo in it’ t-shirt, obviously.  No, of course I don’t have such a thing.  You’d see my bag through a t-shirt, apart from anything else, and I hate that.  But this thing; this Barbie butt, sewn-up anus, no arsehole thing … even I hadn’t known it was a possibility before I had my stoma.  People can’t see Crohn’s, they can’t see a bag (as long as your clothes aren’t too tight); they might vaguely know such things exist, but they don’t know a person’s got them unless they are told.  They’re what’s known as ‘invisible conditions’, but this one takes that description to a whole new level.  Even standing naked, with my bag on show, my massively scarred stomach giving away my Crohn’s status to anyone who might care to think about it, my Barbie butt cannot be detected.  My buttocks aren’t sewn together – now wouldn’t that be a thing? – so it all appears normal.  It’s the first truly invisible condition I’ve come across.  Certainly the most invisible one I’ve ever actually had.  As well as one nobody except the ileostomy/colostomy gang really knows about.  And you, of course.  Because now I’ve told you.  And you are free to keep it to yourself, though I’d rather you didn’t; I’d rather you told people that these things can happen, and that as weird as it sounds, it isn’t.  Like having a bag, it’s a way of saving lives and helping – in some cases even curing – people with terrible, horrible diseases.  You may not want to, I realise, because when it comes down to it, you’re still talking about poo, and many people – especially British and American people – are still weirded out and disgusted by poo.  But I’d love that to change.  And so would everybody else who suffers with any kind of bowel disease – from Crohn’s and colitis to cancer; we’d love to talk about it over canap├ęs, discuss it at dinner, have it be as acceptable a subject as any other disease.  We’re not stupid; we know you’d rather talk about politics or ice cream, but it would be so good if bags and butts ended up on that same list one day.  Excuse me a moment, while I climb down off my soapbox – it’s difficult to do with a suppurating anal wound.

Within a week, my butt wound was no better.  In fact, without the special fairground bed, it was possibly even a bit worse; it certainly felt that way.  I googled pressure cushions and found the nearest stockist.  I phoned them and tried to explain to the shop assistant that I’d had surgery on my bum that wasn’t haemmerhoids so no, the kind of cushion he was suggesting wasn’t actually the one I needed.  I wanted a solid pressure cushion, not one with a hole in, and no, not a rubber ring either; did he have one or not, because there was one on the website that I was staring right at.  I could even give him the product number.  Which I duly did, and of course no, he didn’t have it in stock, but he did have one that sounded like it might work so I summoned husband and told him all about it and that it would cost forty quid.

‘I thought you didn’t need a cushion.’ He said.  Before I could screech my answer at him, he’d grabbed his wallet and was out of the door.  An hour and a half later, I was sitting oh so much more comfortably, on my new cushion.  I was one of the 27%.

Thursday, 19 July 2012

In At The Shallow End

So, when we last spoke, I was finally leaving hospital after my proctectomy (rectum removal, anus sewn up, tra la la) and going home to recover.  I’m going to leave that there, if you don’t mind – and yes, even if you do – just for this one post, while I go slightly ‘off piste’ with a monumental (for me) tale of something I finally did this week. 

Regular readers, and I’m convinced there are some, will know that I’ve been longing to swim.  Ever since I had the bag, I’ve wanted to get in a pool and pootle up and down it to the best of my ability, but I’ve been so scared.  So worried that, somehow, my bag will detach and poo will trail around and behind me and terrify and disgust everyone; that there will be screaming and throwing up, and in just moments I will be banned from swimming, not just in that pool but, from every pool in the Greater London area, because communication between pool management would be that fast in the light of such horror. In less than 24 hours, I would surely be banned from every leisure centre in the whole of the United Kingdom, and the tale of the baglady who pooed in the public pool would be legend amongst swimmers everywhere.

So when I did swim, I didn’t want to be on my own; I wanted some moral support, and I needed it from someone who would baulk at nothing.  Who would cope admirably and still talk to me if the worst happened. Fortunately, I have a very dear friend who fits that bill. A friend who is a writer, a keen swimmer, and who just so happens to blog about swimming pools all over London.  In a revolutionary feat of blog synchronisation, you can read her take on our adventure together here.

Swimblogger had told me she planned on doing a post about Southgate pool at some point, and I bravely and thoughtlessly told her that when she did, I’d like to go with her. I lived in Southgate ‘til I was 9 and have fond memories of swimming there with friends and coming out afterwards into the cold north London air (I only ever remember it being cold), munching on a Double Decker and climbing up an incline towards a waiting car with somebody’s parent at the wheel.  It seemed like the perfect way to do my first swim – in a pool that had nice associations, with a dear friend who was more experienced at swimming than anyone I know of who isn’t a professional swim person.

On Tuesday, we did that thing.  Luckily, Tuesday was the day this week that had been randomly selected for a bit of sunshine in our corner of London, so that was a good start.  I’d been panicking, of course – should I wear my costume under my clothes on the way there, or would that look amateurish?  I’d worried about showering – if it was a communal shower, I wouldn’t do it, I’d decided; I didn’t want to shower with my bag on in front of a bunch of strange women who would doubtlessly stare, point and laugh and leave me cowering on the floor of the shower, weeping, as Swimblogger told them how thoughtless and unsympathetic they were.  You can see why it wasn’t safe for me to try this swimming business alone; I’m a paranoid lunatic.

We said goodbye to husband as we left the house, his cracks about my struggling to swim a couple of widths still ringing in my ears as we headed for the car, and we were off.  I remembered the way to the pool, and drove us there with little incident (that’s my version anyway). The incline I remembered was still there, though now it was covered in what looked like a thousand portacabins.  The place was a building site, but it was still the swimming pool, according to a sign.  We were there. This was actually happening. I hadn’t swum since we were in Australia in December ’09, and obviously I hadn’t swum at all with my ileostomy, so this was big.  And so exciting.  And a little bit scary, as I think I’ve made clear.  We went to reception and asked to buy our tickets but were told we couldn’t swim ‘til 12.  It was 11.55.  We asked if we could just buy the tickets then, but were told we couldn’t do that ‘til 12 either.  Incredulous, we started to giggle, which caused all the people who’d previously been patiently, unquestioningly, and very Britishly, sitting on chairs until 12 to start laughing, too.  We stepped outside to wait in the sun for 4 minutes, not wanting to create too much of an incident. I was a bit miffed though – I’d waited more than two and a half years for this swim, and now bureaucracy was forcing me to wait another 5 minutes.

When we did buy our tickets, I found myself mesmerised by the receptionist’s face – she was wearing enough make-up to warrant a job on a cosmetics counter, and I found that curious in a health club employee. So curious, in fact, that I hadn’t managed to marvel at her false eyelashes and listen to what she was saying at the same time; I had no clue how to get to the pool. Luckily, Swimblogger had taken it all in, professional that she is, so I followed her.  I told you I could never have done this alone.

Getting changed was easy enough, using the lockers was simple, and we saw that the showers were in individual cubicles – if this went well and I didn’t end up sullying the entire pool, I might well use one later on.

And then we walked to the pool itself.  The main event.  I did wonder what had happened to the veruca pool, but Swimblogger tells me they don’t seem to exist any
more.  I missed the veruca pool – the soupy warm, band-aid filled walk-through foot bath where you got verucas - but then I realised that nothing about Southgate swimming pool was as I remembered; the pool was huge and the water looked bright blue and inviting.  The nearest lane was designated ‘slow’, and an old man was swimming in it at an obediently leisurely pace.  I told Swimblogger I reckoned I’d be faster than him.  I expected her to slide quickly and easily into the fast lane with barely a ripple, but she wasn’t going to do that, because she’s my friend first and the Swimblogger second. She came in with me to the ‘do what you like’ lane. It wasn’t labelled as such, but that’s clearly what it was.  She got in first, and before I knew it I was in, too.  The water was 3ft deep – it was just past Swimblogger’s waist; on me it came up to my tits.  I’m a lot shorter than she is.  We looked at each other, she asked what I wanted to do, and then we did it.  We swam.

I stretched out to do breaststroke, let the water hold me, and I was off.  Swimblogger was beside me, grinning gleefully. ‘This is great.  You’re doing great.’ She said.  And I was.  I’d forgotten just how wonderful swimming is; how liberating, how satisfying, how brain-freeing, and I swam.  I’d imagined I’d manage a couple of lengths, with a bit of struggling towards the end, and after I’d done 2, we stopped, talked a bit, laughed a lot, and then set off again.  And I did 2 more.  I was tired after the second one this time, so I relaxed a bit while my friend enjoyed herself swimming without the encumbrance of me for a couple of quick lengths.  She wouldn’t want me to oversell her, but she looked pretty impressive as she did the crawl faster than anyone in the speedy lane next to us.  Did it proper, like, with her face turning in and out of the water and everything.  And then – hang on, this is really true, and most unexpected – I did 2 MORE LENGTHS.  That made 6 in all.  According to a chart on the wall, 5 lengths was 0.3 of a mile, which might not sound like much, but it is to me, and anyway I’d done 1 length more than that.  I felt good.  Happy.  Slightly heavenly, even.  And a bit knackered.  It wasn’t ‘til we climbed out of the
pool, my legs slightly gelatinous, but my satisfaction overriding that, that I realised I hadn’t even thought about my bag.  Nor had I sprayed its contents all around me.  I took a moment to find a man doing a shabby crawl with a flapping dressing on his balding head disgusting, and we headed back to the changing rooms.

Victorious, I showered just like a normal person.  As I came out, Swimblogger pointed out a couple of changing cubicles for the chronically shy. I should’ve been one of them, but somehow I wasn’t.  I’d swum and I’d showered; I could conquer the world.  Well, I couldn’t, but I could get dressed in a communal changing room without dying of shame.  I didn’t exactly flash my bag to the whole place, but I didn’t hide it either. We were all just women in a changing room.  Getting changed.  I did find I was in more of a hurry to get my waistband on over my bag, than I was to get my knickers up, but that’s fair enough, I think.  My bum may have been sewn up, but you can’t tell by looking at it; my bag, however, is pretty obvious, swinging as it does from my stomach, full of poo.  It was still stuck on, nobody seemed to be bothered by it, but I didn’t want to push my luck. 

As we left, I was exhilarated.  So happy to have swum, so grateful to my lovely friend who had managed to make it comfortable and easy without once making me feel like she was sacrificing anything to do it. (Even though I know she loves a good, long, uninterrupted, fast swim.)  I think the laughs we had, and just the general fun of friends being together, made it worth it.  I hope so.  I’m going to swim again.  Soon. But for the sake of our friendship, and her sanity, I’m going to go without Swimblogger the next time.  But not always.  Swimming with a friend is a wonderful thing to do. 

When we got home, we asked husband to guess how many lengths I’d swum.  7 was his answer.  He expects too much of me, that man.

Thursday, 12 July 2012

The Great Escape

It’s weird, yet kind of interesting, how being in hospital desensitizes a person.  Actually not so much desensitizes as depersonalitizes, if such a word exists, and my computer dictionary is telling me it doesn’t by underlining it in red, with squiggles.  But take the Bad Nurse scenario I wrote about last week (you can read it here) – I just went through that whole thing without really reacting properly.   Afterwards, I spoke to my GP about him, and when I got to the bit about how he wouldn’t look at my poor, fresh, angry, suppurating Barbie butt wound, I found myself tearful.  She was sympathetic and horrified as she should have been – as I should have been at the time, but wasn’t, really, until I talked about it with her, and then again when I wrote about it last week – and she mentioned Post Traumatic Stress Disorder, which made me pull myself together.  I wasn’t about to go through anything that serious just because some arrogant nurse made me feel repulsive – I didn’t watch anybody blown up by an IED, or have to deal with the death of a child.  I just had my feelings hurt by an egocentric insensitive dickhead, which isn’t the same at all.  At least, not in my book.  But people do have PTSD after hospital stays, so depersonalitized are they. (It’s my word, I’m gonna use it.  I don’t care about your red squiggly line, Word 2004 –wow, 2004? I really should upgrade..) There was no way I was going to be one of them, though.  When I got out of hospital, I’d have post-operative healing and Crohn’s to deal with, and I wasn’t interested in adding to that list.  I don’t mind the complications of Crohn’s that I occasionally get lumbered with – well, I do, but I accept them – but adding PTSD to the mix wasn’t something I was going to do.

On the fifth night of what I’d been told would be an 8-10 day stay, my surgeon came and sat on my bed, putting his hand on my leg.  As a married woman of a certain age, it’s not often handsome men who aren’t my husband casually put a hand on my leg.  In the real world, I might feel something – anger at his forwardness; bemusement that he thought it was ok, perhaps even a frisson of something else – but in hospital, depersonalitized (yep, still using it) as I was, it just felt comforting and entirely appropriate.  He told me he thought this ward was a tough gig.  He didn’t know about the Hag or the Bad Nurse, but he knew what the place smelled like, and how sick the people around me were, and he asked me if I thought I’d be ok going home.  Would I?  Would I rather be in my own bed with husband and teen waiting on me and nobody else’s effluent wafting under my nose?  Would I rather have my own television and sky+ and shelf-fulls of dvds instead of the bizarre screen that protruded from the ceiling, cost a fortune to watch, and occasionally showed Andrew Lansley telling me how great the NHS was going to be now he was in charge (if anything was going to give me PTSD ..)? Yes, I thought I’d be ok with that.  Might have to get teen to come in and yell at me to shut up occasionally though, just so the transfer wasn’t too extreme.  He told me I’d have to be very careful with the butt wound; I was to bathe in salt water at least once a day, more if I could manage it, and get the nurse at my GP surgery to check it once a week, unless I felt it was getting worse.  He couldn’t stress enough how much I’d have to take care of it. I felt a flash of vindication – yeah, Bad Nurse; it needs to be taken care of – checked, dressing changed … But more than that, I felt hugely relieved to be getting the hell out of there.  The year before, I’d been sad to leave the friends I’d made, and had come back to visit one patient every time I had a hospital appointment.  Although I liked the woman next to me who was very sick, we hadn’t made that kind of a connection. Once I was out of the ward this time, it was over.  And I couldn’t have been happier about that.

Of course, being told by the surgeon you’re going home the next morning and actually being able to leave are two very different things.  He popped in during his morning rounds at about 8.30am and confirmed that I could indeed go; I gleefully called husband and told him the news, and we’d both been here before enough times to know it wouldn’t exactly be imminent.  We agreed he should come and get me at about noon.  When the pharmacist came round at 10, she wrote down all the drugs I’d need to take home with me, and said they should be ready in a couple of hours – we were on target.  You’d think I’d never been in hospital before.  You’d think I’d never been discharged before.  I actually believed her.  And then the pain team came round to make sure I would have enough pain relief to go home with – I don’t know if I’ve mentioned it, but having your anus sewn up is very painful, as is having your torso cut open and resealed.  Post-operative pain after such a huge surgery is pretty extreme, and once they took away my clicky morphine drip thing, they were having a bit of a battle getting it under control.  It was decided I would go home with liquid morphine.  So far, they’d been upping the dosage of liquid morphine on an almost four hourly basis, so I was to be sent home with orders to take quite a lot of it at a time.  I should tell you, it’s disgusting.  It works, but it tastes so horrible, it’s almost not worth it.  So then the pain team said they’d go and let the pharmacy know to add the liquid morphine to my discharge meds.  At half past eleven, I saw the pharmacist on the ward again and asked her if my drugs were at the nurses’ station yet.  She looked at me as if I had just asked her if the alien on her shoulder would like a piece of chocolate.  Was I some kind of insane person? They’d be ready in a couple of hours and not before.  She was right; I was some kind of insane person – I’d believed her when she’d told me they’d be ready in a couple of hours.  I needed sectioning at the very least. 

Husband turned up at noon and I broke it to him that we wouldn’t be leaving for a while.  After an hour, I decided it might be an idea to get dressed, which is when I discovered that my shoes were gone.  My coat was in the cupboard where my clothes were meant to be; my clothes were in the cupboard where my clothes were meant to be, but my shoes were nowhere to be found.  I was trying to work out where else I could look for them and then husband made a weird half-laugh, half-gasp kind of a noise and put his hand to his face in embarrassment.  He’d taken my shoes home on the day of the surgery, he announced.  And not thought to bring them back today.  He said the car wasn’t far, that I’d probably be fine.  I didn’t have slippers even; I had little socky things I’d bought from M&S because my feet had swollen up after surgery the year before, like those old women you see on buses and wonder why they haven’t just bought bigger shoes instead of letting their flesh splay out between bits of the shoes they did buy.  I didn’t like having that look, so I hadn’t brought my slippers – the ones with proper soles, I’d spent four quid on socky things. I was about to walk to the car in said socky things.  And we were in London, so it had been raining.  And my meds still weren’t there.  I had to look over at the Hag to remind myself that I did indeed want to go home, even if I had to do it in bare, slashed up feet.  Which I didn’t, exactly.  I took a big slug of the liquid morphine that the nurse had brought round a while earlier.  Maybe that way I wouldn’t feel the ground beneath my feet. If I ever got out of there at all …

Eventually, of course, the drugs came.  In a huge bag, because the bulk of them were for my scratched cornea.  The ridiculousness of that particular drama wasn’t over yet – I was going to have to do the hourly dribble of ‘natural tears’ for at least another month, and though I could see now, and it didn’t hurt any more, my vision was still blurry through my left eye, and felt by now like it always would be.  I imagine not many people go into surgery to get their rectums removed and their bums sewn up and have to leave hospital with copious supplies of eye medication.  But who wants to be like everyone else anyway?  Everyone else would wear shoes to leave hospital.

As I was walking through the corridor a doctor chased after me to tell me I was low on potassium.  I told him I often am, and that I would eat a banana every morning to keep it level. He said that was a fine idea, but I should also take these pills the size of 2p pieces and thickness of a slim paperback, for the next few weeks as well.  I had to mix them with water and drink the solution.  I took them, added them to the sack of meds and told husband that he could take them to the chemist when we got home.  I’d had that stuff before – I’d rather drink liquid morphine by the cupful.  I’d rather drink the contents of my ileostomy bag.  Really.  Walking through the street in the socky things was as painful and damp and ludicrous as I’d expected it to be, but it was kind of funny as well, and I suffered no ill effects.  Maybe it was the morphine, perhaps I was still depersonalitized (yes – got it in again) and incapable of minding whether it hurt or not, or maybe it just wasn’t all that bad.  Mostly, I think it was probably because I was going home.  This whole Operation Ileostomy Parts 1 and 2 was finally over.  At least, the really hard bit was.  Now I’d get to lie in my bed for a few weeks watching telly and eating chocolate.  Of course, I’d have to watch it all again at some point – liquid morphine does weird things to your memory.

Thursday, 5 July 2012

Bad Nurse

I’ve ummed and aahed about whether to write this post or not.  I’ve asked myself if it’s the right or the wrong thing to do, and wondered if I should forget it altogether and move on to another tale.  But I think, on balance, that I should.  That it’s important to know such things exist.  The thing I speak of is the bad nurse.  Not the grumpy, overworked nurse who may be under so much pressure she or he snaps at you once or twice.  Nor the exhausted, tearful nurse who’s done one too many shifts that week and is at breaking point and looks, for a moment or two, like he or she doesn’t know what they’re doing.  No, I’m speaking of an arrogant, unpleasant, dictatorial nurse with a complete inability even to contemplate the fact that any view but their own is the correct one.  I speak of the male nurse who came on duty for one day and had a profound effect on the whole ward, or at least the woman in the bed next to mine, and me.  Well into the night, and long after he’d gone.

It was three days after my surgery.  The very sick lady in the bed next to mine had pulled back her curtain and was feeling well enough to chat and we bonded quickly.  She was the first person I’d ever met with Crohn’s who was more ill than I’d ever been.  She had two bags and multiple lines, not to mention ulcers that were refusing to heal.  She was so thin from lack of nutrition, due to malabsorption, and she was lovely. We had a good laugh together, shared our fears and our experiences, and she was the one who confirmed for me for certain that the hag in the bed opposite had indeed told me to ‘shutup’ when I was retching.  She was nicer than me though, the woman in the next bed, and she didn’t really like me calling the nasty old woman ‘the hag’.

Now I had someone to pal around with, I looked forward to a relaxing day on the ward – all smells, grumpy hags and excruciating pain aside.  And then he arrived.  The male agency nurse.  I met him as I was hobbling to the shower, my back bent to protect my tummy scar, my bum cheeks tightened in an effort to comfort my butt wound.  He stopped me and asked why I thought I should shower now when he was about to do obs.  I told him I’d got as far as the ward door and I wasn’t going to turn back after so much effort.  My sore eye was half closed, so maybe he thought I was winking at him, and perhaps that was why he let me go without further complaint.

Every bed on the ward has a table, and on these tables we each had at least one packet of dry wipes. I had two.  These were important to all of us for using when we changed our bags, but they were also indispensable to me for when I had to wipe my eye after squirting the hourly ‘natural tears’ dose into my scratched cornea.  They were soft and comforting and I always liked to take a couple of packs of them home with me, if I could swing it.  When I came out of my shower, they were gone.  In their place were  ugly little packets of hard, coarse tissues, the same non-absorbent texture as the toilet paper we used to get at school.  Except for the fact that it didn’t have ‘now wash your hands’ written across each sheet, this stuff was exactly the same as that stuff, and it was of no use for either of the purposes I required of it.  I asked a nurse where our dry wipes had gone, and she said that ‘he’ (the horrible agency nurse – in this post, I always mean him when I say ‘he’) had said the ward looked unattractive with them on our tables and had ordered them all replaced with something he found more aesthetically pleasing.  I looked at my new pal, who was equally bemused and she shrugged at me.  There wasn’t much we could do at this point.

After my shower, once I was back in my funny blowing up and letting down bed, it was time for my obs and for my dressings to be changed.  Every day, on my surgeon’s orders, my tummy dressing needed to be changed, and my butt  wound checked and redressed..  The agency nurse came to do it, starting with my obs, which he did with little grace, clearly angry that I hadn’t been available to have them done when he wanted to do them.  He took my temperature, my blood pressure and my pulse silently, then I asked him to do my dressings.  He did the tummy one easily enough and then made as if to leave.  I told him there was still my Barbie butt to check on and dress, thinking he’d be amused at the witty term.  He didn’t bat an eye.  He also didn’t check my butt wound.  I told him it needed to be checked – that it was a risky wound and needed to be looked at daily.  He ignored that and started to tell me how to do the dressing myself.  The dressing was just like a sanitary towel; I’m a woman – I know how to put such a thing in my knickers, but I lay there aghast as he mimed pulling panties down and shoving the pad in, then pulling them up again. Livid and upset and not a little bit intimidated, I told him I knew that, but that the wound needed to be checked. The surgeon wanted the wound checked every day.  There was a high risk of infection because of where it was, and I couldn’t possibly contort myself into a position to see it.  He started to explain once more how to put the pad in, started doing his stupid mime yet again, and I realised that for whatever reason, he was not going to be looking at my butt wound. It’s embarrassing having a wound there, not to say potentially humiliating, but all the nurses and doctors and surgeons had done their best to normalise it; to make me feel it was okay, they’d seen hundreds of them, it was no big deal.  Now here was this horrible man, who was supposed to be a nurse – the kindest of creatures, in my experience – making me feel disgusting for wanting him to look at my bleeding, suppurating, sewn up anus.  He left and I hated him.  I couldn’t see my butt wound, but I could and did put a new dressing into my knickers. 

I tried to stay quiet for the rest of the day and keep out of his way, but there came a time when my dose of anti-emetic was due.  I was still on morphine and if I didn’t take an anti-emetic (anti-sickness drug) I would vomit.  And I didn’t want to do that for a million reasons, not least because I didn’t want to arouse the ire of The Hag again.  So I had to call for a nurse and of course he was the one who came.  I told him I needed cyclizine and he said he’d get an injection.  I told him that I usually had it through my central line.  He told me I’d be better off having it as an injection, and I pointed out that if that was the case, I would surely have been having it as an injection. He argued with me for some time before he stomped off, furious, not having given me my cyclizine. After a while, one of the lovely nurses came and did it for me, and it was only then I realised he probably wasn’t trained to administer drugs through a central line, in which case why hadn’t he just said so?  Why had he chosen, instead, to argue with me and try to make me feel like everyone else had done things incorrectly, and he was the only one who would be doing things right?  So unsure was I about this reading of things, that I actually checked with medics on Twitter before writing this – he was that powerful in his intimidation that even now, 8 months after the event, I wasn’t quite sure I’d read things right.  It’s amazing how bad a bad nurse can be.

Finally, his shift was finished and he was handing over to the nurse who was on night duty.  Standing at the foot of my bed with my chart, he read that I was on 6 codeine phosphate at night and told her ‘That sounds like a lot, but it isn’t – we often do that for pain when it’s as bad as Wendy’s’.  I interrupted and told him I wasn’t on the codeine for pain. I was – and am still, and have been since 1985 – on it to regulate my bowel. The nice nurse smiled knowingly at me, but he ignored my words.  Then he said, ‘Actually, I don’t know why they’re not measuring her output, they should be, every time she empties her bag.’  If the surgeon hadn’t seen fit to order that, who the hell was he to be making such a judgment?  On his one day on our ward, this person had me shaking with rage, wanting to shout at him, but knowing there was little point, and also feeling a bit scared and nervous of the man who’d already made me feel repellent once that day.

Late that night, I was getting up to go and empty my bag when a nurse stopped me – a lovely, warm, kind nurse, whom I knew well – and said, ‘If you’re going to empty your bag, Wendy, you need to take a jug and measure your output.’  I was gobsmacked. ‘Why?’ I asked.  ‘It says on your chart,’ she told me. I was incredulous; he’d actually written it down. ‘That’s not a doctor’s order,’ I told her, ‘You know who put that? That agency nurse.’ I could feel my voice wobbling, my eyes filling with tears of frustration and anger and disappointment in myself for not having had a go at the jerk when he was there.  The nurse looked at me and laughed wearily, in a way that said she’d experienced him before. She took the chart and crossed out what he’d written.  ‘Forget it then.  I’m sorry.’ And I was free to empty my bag as normal.  To forget him.  I wish I could.  I’ve been so lucky and so blessed with the nurses who have treated me in the more than 25 years I’ve been going in and out of hospital that this hideous man came as a huge shock.  And I know it’s been 8 months, but so far, I’ve found it very difficult to forget him.  Even as I write this, I can feel the fury bubbling under.  A bad nurse is a very dangerous thing.  I think I’m probably fortunate that all he did was humiliate and intimidate me.