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.

The Stoma and The Hag

After surgery, I tend to have retching sessions.  It’s not very pleasant, for me or for anyone around me.  When it happened after the first surgery, when I was on the ward with the lovely, supportive women, they did everything they could to make me feel better about it.  They were warm, and lovely, and helpful and soothing.  When it happened late one night, the woman opposite me came over and soaked a flannel in cool water, which she held against my forehead.  Another night, when I couldn’t stop retching and my body started involuntarily twitching as well, while everyone was asleep, I called the night nurse.  She was an agency nurse, and I hadn’t met her before.  She told me to relax.  When I told my surgeon the next day, he said it was impressive that I hadn’t punched her.  Relax.  When you’re retching and your body is twitching like you’ve got St Vitus Dance, you can imagine how helpful it is to be told to relax.  As though you hadn’t thought of that yourself and had instead chosen to put your entire being through a series of hideous spasms just because it was late at night and you were bored.  I’ve met very few nurses who I didn’t think were complete, devoted, extraordinary angels, but the few I have have always, without exception, been agency nurses.  I should add that I’ve also met plenty of lovely agency nurses.  Bad nurses are, thank goodness, and at least in my experience, a rarity.  I didn’t call that particular nurse again, but fortunately another of my gorgeous room-mates had woken up herself and seen the mess I was in.  When the nurse had gone, she came over and tried to talk me down, and when that didn’t work, she slipped me a diazepam.  That’s wrong, obviously; wrong and naughty and I don’t condone it at all, or suggest that anyone else do similar.  I wasn’t prescribed the diazepam; I was on plenty of other drugs that were prescribed, but I’m also an experienced pharmaceutical user, as was she, and we both kind of knew it would be all right.  And though it’s wrong, wrong, wrong – I can’t stress that enough – it worked, and I was finally able to fall asleep.  I tell you all of this, so that you are clear about how lovely fellow patients can be.

Another thing I should mention is my stoma.  What with my eye, and the butt wound, and the re-re-re-opened scar that bisected my torso, I hadn’t given much thought to my stoma, but even regular readers (and I’m told there are some) may well not remember that some time earlier it had prolapsed.  This basically meant it got very, very long, which was more than a little disconcerting.  Special underwear and constantly worn waistbands had sorted it out on a day-to-day basis, but the surgeon and I had discussed whether it could be fixed properly during my proctectomy operation.  Unfortunately, to completely fix it would involve resiting it, and as my stomach is scarred like some kind of constantly rewritten road-map with none of the earlier routes erased, that wasn’t an option.  My stoma is sited on the only little bit of tummy I have that isn’t lumpy and bumpy with scar tissue.  In fact, my surgeon decreed that the only place he could possibly resite it was on my forehead and for obvious reasons he wasn’t up for doing that.  Instead, he told me, he would refashion it.  That sounds good doesn’t it?  Kind of swanky; like he was going to make it into some sort of cool, radical stoma that all other stomas would envy and wish they could emulate.  Like I was going to have the fanciest stoma in town.  That wasn’t what it meant, as it turned out; I think he just fiddled with it a bit and pulled what he could back in, and rebuilt it slightly in a kind of cut-price six million dollar man way.  Though I didn’t realise it was different at first.  At first, I just panicked.

I should fill you in on my bag changing routine, as it was before the surgery.  It took a while, up to thirty minutes or so, on a bad day.  I had to take off the old bag, wash the area, wait for it to dry, spray with barrier stuff, wait for that to dry, sprinkle with powder to stop the skin breaking, tap off the excess, then smear paste all the way around the base of the stoma; that was the bit that would take a while, but it was also the bit that prevented leaks.  I’d found the best way to do all of that was lying on the floor, with my neck and head leaning against the bath tub.  Not exactly a simple process, but I’d tried lots of different positions and techniques and that was the one that worked.  The most important part for me, though, was getting the paste right. If the paste was right, there would be no leaks and all would be right in stomaworld.  You can imagine my horror then, when, on finally remembering the stoma’s existence, I looked and saw through the completely transparent bag they put on you in hospital, that my stoma had no paste around it.  It was early on the second day post-op and I was panic-stricken.  I demanded to see the stoma nurse at once; there was no paste; I was going to leak; life was hard enough on this damned ward; I didn’t need the runny stoma output that came from not eating dribbling all over my belly on top of everything else. 

The stoma nurse came and assured me it was all fine.  She said we’d change the bag the next day and that, given it had lasted two days so far without leaking, she was confident it would be okay.  It had, after all, been refashioned – things might be different now.  But she wanted the bag to last three days at least, so she wasn’t going to change it; she was going to wait ‘til I was up to changing it and she would come with me for reassurance.  I agreed, but then I found I was just worrying about it leaking because nobody had put any paste around it.  So I decided to get up anyway, and do it myself.  My way.  I could put paste around it if I wanted to.  I could change it whatever way I liked; it was my stoma for goodness’ sake.

So I grabbed my ileostomy kit, shuffled painfully to the bathroom, filled the sink with water, leaned against the wall (there was nowhere to lie down, and anyway I really couldn’t have manipulated myself into that position) and set everything up to do the change.  I pulled my bag off and there was … well, not what I expected. It had looked the same through the bag, but this little stoma was one I hadn’t seen before and I felt weird.  Almost betrayed.  I’d got to know the little guy quite well and though I’d stopped short of naming it, I’d felt like we were pals, of sorts.  And now that stoma I’d known and grown to love was gone and in its place was this smaller, pinker thing that lay in a completely different position and whose ‘mouth’ I couldn’t see.  On my old stoma, the ‘mouth’ – the bit where the poo came out – was facing front so when I was changing, I could see if it was about to start working.  Now it faced down, like a tap.  Which would probably make leaks less likely, but I felt a kind of bereavement about the whole thing. I decided to see if this new stoma was truly different.  I wouldn’t put paste around it; I’d just put the new bag on and leave it at that.  I squirted the barrier spray and let it dry, then put the bag on.  No powder, no paste.  Now we’d see if it had worked.  If my refashioned stoma had been worth the effort.  It had only taken about six minutes to do the entire change, so if it had, then I was going to find it quite easy to learn to love the new version. 

What I didn’t love was this ward.  This ward of women who seemed to vary from silent to downright unfriendly.  And worst of them all was the hag directly opposite me.  She was constantly berating the nurses, and she put me in mind of Katharine Tate’s ‘Nan’ character.  She had the foul mouth and ugly demeanour that had been funny in a fictional creation, but was really rather unsettling in a woman in a bed across the way. 

That evening, the quiet lady opposite me, who I’d by now realised spoke no English had a few visitors around her.  Next to her, the hag seemed to me to be sneering at anyone who looked her way.  I tried not to glance at her myself, instead straining to hear the sick young woman next to me talking quietly to her husband; I wondered if she would be well enough to talk to me at some point – she seemed like my best option.  And then the retching started again. Horrible, unattractive, and louder than was polite. I had no visitors that night – husband had a gig, and teen was working on a uni project – so I was all alone, making a revolting noise, and trying not to be sick.  I was holding a kidney dish to my chin, in case I actually threw up and trying to be unobtrusive in my retching, when suddenly I heard, ‘Oh shutup’ (without the ‘t’) from across the way.  The ward fell silent.  I thought maybe I hadn’t really heard it; she hadn’t really done it; surely the hag wasn’t that hideous .  That unsympathetic to someone else who was ill.  And then one of the visitors by the bed opposite me shot her a filthy look that told me I was right.  I actually felt close to tears.  This woman was horrible, hateful and nasty, but what a thing to do.  To screech ‘shutup’ at somebody just out of surgery.

Late that night, when the retching had stopped, and the ward was dark, and I wondered if I’d imagined it all, the woman next to me called out from behind her curtain, ‘Are you okay now, Wendy?’ I said yes, thanks, and apologised for upsetting anybody.  ‘Don’t be silly,’ she continued, ‘We’ve all done it.  It was me a couple of days ago.’  So I had heard correctly.  The hag had indeed told me to shutup when I was involuntarily being disgusting.  And somebody else was sympathetic to how horrible of her that had been.  But better than that, I now had somebody on the ward to talk to.  As well as - and this was new -  somebody to hate.

Kicking Up A Stink

Before I get back to my eye and all that what happened next stuff, I just want to place this whole story properly in time and space.  I know I’ve mentioned the dates now and again, but lots of people don’t read this every week (I know – imagine!) and some very lovely people have been tweeting me asking how I am as though what they’ve read has just happened and it makes me feel like I’m being misleading.  And nobody wants to be misleading – well, nobody who isn’t a politician or a newspaper mogul or a high-powered businessman, or just Rebekah Brooks – so I want to be clear: the first surgery of my baglady transformation, the sub-total colectomy, the one where they made the stoma and gave me the bag, was in September of 2010.  The second surgery, the proctectomy, the Barbie butt, rectum removal, eye damaging operation that I’m currently speaking of, was in October 2011.  Eight months ago, in other words.  I don’t want to create my own spoilers, but you’d be safe to assume I have two working eyes and a Barbie butt that remains sealed.  More than that, you’ll just have to keep reading; even become one of those people who does read this blog every week.  Just a suggestion, you don’t have to, of course – you’re the captain of your own life and as such perfectly capable of deciding for yourself what you read and when.  But remember, not everything has poo in it. 

That first night on the High Dependency Unit lasted a very long time, as nights in hospital so often do.  What with being woken every hour to squirt more ‘natural tears’ in my eye, and nurses doing my obs, and just the ridiculous pain of said eye … it was a long time before dawn rose and curtains were opened and the day began.  Which is saying a lot when you consider that happens at about 6.30am on a hospital ward. Once morning was officially declared, I found myself being ordered to get up and walk.  Not without several clicks of that morphine button, I wasn’t going to.  I wouldn’t put my ipod on without several clicks of that morphine button; going for a walk was asking a ridiculous amount.  As I was helped up by two lovely nurses, I found I must have clicked plenty of times, as it was quite easy.  At least, the first few steps were – then my body reminded me that it wasn’t my eye that had been operated on.  My butt wound hurt like hell; every step I took felt like an evil goblin was standing behind me with a burning broomstick which it was happily ramming up my arse. I turned to catch him at it and give him a piece of my mind a couple of times, but he was too quick for me; little bastard.  It did make me forget about my eye though, so I suppose I owed him some kind of thanks.  You can only click on the morphine button a certain amount of times and actually get results.  I knew that.  I knew that extra clicking was useless because no more morphine would be delivered, but that didn’t stop me trying.  It was that, or reveal to the nurses that I truly believed the thing about the goblin.  Needless to say, I was very happy to get back into my bed.  And even happier when the nurse from the colo-rectal ward came to tell me my bed there was ready for me.  I could leave the HDU and embark on the next leg of my operative journey.  I was about to be one step closer to going home.

When I’d been on that ward a year before, after the first surgery, I’d been lucky enough to be on there with a bunch of fantastic women.  Two of them, I still count as friends today, but all of them were warm and lovely and inclusive.  We were a gang of patients, spending the days laughing and talking and generally supporting each other through all the hard bits.  There’d only been two of us – out of six – who’d had bags, so it wasn’t like everyone was going through the same stuff either.  There was variety.  And – bizarre as it might sound – there was fun.  Somewhat stupidly, I think now that I rather expected to find a similar situation this time.  I was wrong.

This time, I was wheeled onto a very different ward.  This time, every bed had a curtain half-pulled around it, which is as good as a sign saying, ‘fuck off; I’m not here to make friends, leave me alone’ without so much as a please or thank you.  The two beds that didn’t have the curtains pulled at all, with the occupants on full display, contained elderly women who were probably asleep, but to all intents and purposes could’ve passed on to the colo-rectal ward in the sky.  Or wherever it is one goes.  They certainly weren’t going to be sitting up, having a laugh, or nicknaming the occasional arrogant junior doctor any time soon.  ‘You’ve got a special bed, Wendy’, the nurse told me as she helped me climb into it.  And she was right.  So that my butt wound didn’t get too sore, and didn’t stay in the same position (one would lead to the other, I suppose), my bed was like a very flat lilo that blew up and went down sporadically and seemingly not with any kind of rhyme or reason to its timing.  I’d be lying in it just getting comfortable and then bits of it would swell and move and toss me about a bit and then they’d subside and things would be back to how they were.  It was like being on some kind of involuntary fairground ride for people who don’t like too much adventure.  It probably would have made me a bit seasick if I hadn’t been on intravenous anti-emetics every four hours. Also, I had to lie on my right side as much as I could because if I lay on the left, I was facing the windows and the sunlight hurt my damned, ridiculous, unnecessary and annoying eye.

You have to understand, I wasn’t even 24 hours post-op at this point, so things quite possibly weren’t making the kind of sense I thought they were, my general awareness hadn’t yet returned in its entirety, and life was seeming like a series of disappointments.  Also, it was hours to go before visiting time.  Visiting time starts at 3 and goes on until 8.  Husband has always behaved in an exemplary fashion as regards visiting time and somehow usually managed to stay the full five hours.  Teen found it all rather more boring and would usually pitch up after uni, stay for an hour or so during which he’d reassure himself that I wasn’t going to die before he visited me again, try not to look bored for the next 58 minutes and leave.  I was waiting for that to happen, and any other visitors who might turn up, when suddenly my anaesthetist appeared and started closing the curtains around my bed.  If you’ve ever had an operation you’ll know you meet your anaesthetist just before you have the surgery when they have a chat about the drugs they intend to use, you see them again in the operating theatre as they send you to sleep and that’s it.  Their responsibility for you is over and you won’t see them again unless you need another operation.  But here was mine, and she’d closed my curtains and it was just her and me and she was really seeming a bit of a mess compared to the cool, sensible woman I’d last seen telling me to count back from ten.  It turned out she was worried about what had happened during the operation; about how my eye had got damaged.  I told her the consensus seemed to be that something had got into my eye while I was unconscious.  She said it couldn’t have; that my eyes were taped up and that she would have noticed.  I said it clearly had and pointed to my obviously swollen eye for which I was so far still refusing any more antibiotics.  She protested some more, despite the evidence in front of her until finally I said, ‘Look, I’m not blaming anyone for this.  These things happen.’ And the relief on her face was palpable.  In this stupid, America-copying, ever more litigious society of ours, this poor woman on whose watch something silly had gone wrong was clearly terrified for her career.  Nothing permanent had happened to me; I’d been in surgery to complete a procedure that had changed my life, and if she hadn’t done her job properly I wouldn’t have survived it.  I wasn’t going to sue her or the hospital or anybody else, and I so hate that anyone even had to think I would.  I managed to put her mind at rest, without either of us actually mentioning anything about whose fault it might be, or litigation, or professional liability, which was quite a feat considering I still wasn’t 24 hours post-op, and she wished me well and left.  But not before opening my curtains.

I looked around me again.  When I’d come onto this ward last time, I’d been greeted warmly by all the other women there.  They’d introduced themselves, each other, taken the piss out of how they were doing … but that was another time.  With the curtains now open around all the beds I could see that, apart from the two women who looked like they’d sleep forever, there was a slightly younger woman opposite me, who smiled shyly, a woman my own kind of age in the bed next to mine who looked frail and terribly sick and an old woman in the corner who looked – well, not to put too fine a point on it, she looked nasty.  I took an instant dislike to her, and I don’t think it’s just because she was scowling at me as I reached for my phone.  This time around, I wasn’t one of only two patients with a bag.  This time round, everybody had one.  I think I was the only one with a sealed butt though – the aroma on that ward couldn’t have been coming from just one person farting.  This was going to be a very different experience from the last time I’d lain on this ward post-surgery.  The last time I actually had fun getting better.  This time it was really going to be work.  And it probably wasn’t going to smell very nice.

In The Blink Of An Eye

 

So I had my wonderful, joyous, miraculous moment and then I woke up.  At least that’s what it feels like.  The needle goes in, you bathe in marvellousness, then time goes by – five and a half hours in this case – in just seconds and you’re awake.  Not properly awake, but sort of conscious.  For me, it was much nicer than I was used to.  After almost every surgery I can remember, there has been trauma of the coughing/puking kind, but this time I didn’t feel like that.  I could breathe clearly, I felt no urge to throw up, but I was aware of being schlepped about; of being plonked in a chair, then hefted off and not very gently put back on a bed.  I didn’t hear it, but I imagine someone was saying, ‘On my count’, like they do on television. As I clawed my way up from wherever I was to something close to consciousness, I felt panicked and tried a couple of times to speak before they understood me.  ‘What’s wrong?’ I wanted to know. ‘What are you doing to me?’  A kindly nurse smiled prettily and reassured me that they were just doing a post-surgical chest x-ray to make sure they’d put the central line in properly.  The central line is a catheter that goes in through a large neck vein and into the central vena cava (left atrium of the heart); they use it for various things – administering drugs, drawing blood, nutrition if necessary.  In my case, we were just hoping to go for the first two.  It’s obviously very important that it goes into the right place, and whilst they do their best to ensure this in theatre, with ultrasounds and other whiz-bang type machinery, it’s only when they do the final chest x-ray that they can be sure.  I know this now.  I didn’t know it then, which is why I panicked.   Then I panicked again; they hadn’t told me whether or not … ‘it’s all fine’, the nurse grinned at me again before I could formulate the words, followed by ‘and look …’ I looked where she was pointing and there were my loved ones.  Three of the ones I love the very best – husband, teen, and littlest sister. (Middle sister had decided she’d greeted me after quite enough surgeries and she had heaps of work on, so we’d agreed that she didn’t need to be there this time.  My mother was on holiday; apparently your child in her 40s having surgery isn’t grounds for an insurance refund.) And I can’t tell you how happy I was to see them.  I was genuinely overjoyed.  Joy that I was having the first pleasant post-surgical recovery period I’d ever had, joy that they were there immediately, rather than my having to fall in and out of consciousness a few times before I saw them looking anxiously down at me on the ward, and something else, something I couldn’t quite identify at first, because I’d just had five and a half hours of surgery and was coming out of a very heavy anaesthetic and jeez, what do you want from me?

I did work it out though, a bit later.  I realised it was over.  This long, arduous journey I’d been on for more than 25 years – the whole ‘I’m never having a bag, should I have a bag, fuck off, look at me, I don’t have a bag, oh bloody hell, I’m in bed again, but hey, 6 surgeries so far and still no bag, oh this is too much I’m going to have a bag, now I’ve got a bag, but should I have it permanently, maybe I should, oh what the hell, just sew my bum up and be done with it’ dance I’d been doing for so long.  The surgeries I’d thought would end in a bag that didn’t, the operations I’d not been expected to survive (years ago), all of that was over. I had a bag, I had a Barbie butt, there was no going back and I was done.  Well, probably – there was always the possibility of adhesions and complications and Crohn’s showing up in all new kinds of places and needing whole other kinds of operations, but I didn’t need to think about that now.  That would be a different story, and this was the end of the current one that had been going on as long as EastEnders.  Longer.  Though not as long as Coronation Street.  In fact, I clearly remember watching the first episode of EastEnders as I came out of my first surgery in 1985, and when I was a writer on it and thus present at their 15^th anniversary party 15 years (obviously) later, I felt like it and I had some kind of psychic link.  Then I left and haven’t watched it since and now it means nothing to me, but hey – that’s life.  And soap.  And I have my own London-based soap to deal with without following an imaginary one, too.  I had set the sky+ for Corrie before going into hospital though.

Husband, teen and littlest sister all walked alongside my bed as we went up to the High Dependency Unit where I would spend – hopefully – just the first night.  After the ileostomy surgery I’d stayed there for 4 nights, but that was mostly because there wasn’t a place on the colo-rectal ward ‘til then.  Once we got there, I was delighted to see a lovely male nurse who remembered looking after me the year before when I’d had the ileostomy op so I felt safe and secure and everything was lovely, except that my left eye hurt.  A lot.  I told the nurse and he said they’d keep an eye on it (no pun intended) and then I closed it again and drifted away. 

The next thing I remember is the middle of the night, with my loved ones gone, the lovely male nurse was clocking off and there was an equally gorgeous female nurse who I also remembered and who remembered me from last year; we smiled at each other as she took my obs, I remarked that my eye still hurt, but I remedied that for the moment by keeping it closed and didn’t think too much of it.  More importantly, I clearly recall thinking ‘fuck I’ve done it.  I’ve really done it.  I’ve had my bum sewn shut.  I have a Barbie butt.’ And then I realised something else, and I have no idea why I’d not given this any thought before, but I could no longer fart.  Ever.  I would never fart again.  That bad smell in a room; it would never be me.  A lift full and someone lets one go – I would not be the culprit.  This was huge.  As well as being excluded from that phrase about opinions being like arseholes because everybody’s got one (not me – and not quite a lot of other people like me, actually), I was also never going to be the one who’d farted.  That was mostly a good thing, of course, but there were disadvantages.  Years earlier, I’d had to come to accept I was never again going to experience the joy and release of a huge, solid poo.  A big, satisfying, hard-fought dump was never to be mine again.  Instead, I had decades of nasty, runny, toxic smelling diarrhoea, until finally I got to the point I’m at now, with a bag into which practically odourless, fairly viscous stuff pours, mostly without my being conscious of it.  Now I was never again to feel the release of a big, loud, angry fart.  Occasionally, my stoma bubbles and spurts, making a noise that’s only a very distant relative of a proper, substantial fart, but that’s it.  One more surreality to add to the already full pantheon of weirdness that was to become my normal life.

The next day, my left eye was still hurting, the post-anasthesia glow had passed, and the morphine alone wasn’t keeping it at bay.  It was hurting a lot.  And I was complaining a lot.  I could see the irony – though only through my right eye – my butt had been sewn up, my rectum had been removed, I had a huge scar down my middle, and the obvious one where my anus used to be, and all I could feel was how badly my left eye was hurting.  A nice male nurse who I didn’t know took it upon himself to look at it properly and discovered that there was something in there, and so it was that I spent the day after having my bum sewn up, sitting on it in a plastic moulded chair with just a thick cushion for protection as the nurse held my eye open and irrigated it over and over again, pulling stuff out of it at regular intervals, over a period of close to 3 hours.  Finally an opthalmologist came over from the eye hospital nearby and declared that something had entered my eye during surgery and although it was now out, my cornea had been left badly scratched.  I had to put something called ‘natural tears’ into it every hour and use an antibiotic cream as well.  Within minutes of said cream being squeezed into the corner of the eye everything swelled up and I could no longer see, so I refused to let them put any more of that in.  Which was all well and good, but by now it was late at night and nobody could get hold of anybody to find an alternative anti-biotic and the nurses were concerned that without treatment I could suffer permanent damage.  To be honest, I found the whole thing somewhat embarrassing; I was on a High Dependency Unit where they were supposed to be watching to make sure my surgery had gone okay, and all I could do was whine about my eye which was hurting like hell.  I must have seemed a bit of an idiot, as they ran around me, trying to help, trying not to look like I was annoying them.  My only solace was that things could’ve been slightly worse – if things were different, I could’ve been farting as well, and just think how mortifying that would have been.

One Moment In Time

I’m not quite sure why there was a Women’s Waiting Room this time.  I assume there’s a Men’s one, too, but I really don’t know why.  They do these weird things in hospitals from time to time.  For a few years, they had mixed wards, which was horrible, frankly.  When I asked a nurse why they were doing it, she told me that men recovered much more quickly when there were women around than when there weren’t.  I asked if women’s recovery was different too – it wasn’t.  Which says more about our society than I even want to think about right now.  These days men and women are in separate wards again, and I think that’s a good thing, but I’ve always waited for surgeries in mixed rooms before now – where people sat with their loved ones so the last person they saw before they went into the operating theatre was somebody who meant something to them.  I had husband with me, and he was the wrong sex for the Women’s Waiting Room, so this time I’d be going alone.  All of this was going through my head as I walked with the nurse to said waiting room, without anything to call my own.  I’d left everything I owned with husband, so I had nothing – no handbag, no watch, no knickers – just me, my slowly filling ileostomy bag, and my perfectly smooth, waxed butt enjoying its last hour or so with a hole in it.  A fact that preoccupied me no end.  I was having a huge part of what was left of my intestines taken out, but all I could think about with this surgery was the fact that my anus was going to be sewn up.  That by the end of the day I was going to have a Barbie butt for ever more.  I’d thought having a stoma and a bag that I pooed into was surreal, but this seemed even more so.  I’d heard of bags all my life; I’d never heard about Barbie butts until I was asked if I wanted to have one.

And then I was there, in the Women’s Waiting Room.  Where there were two other women waiting.  One of them had one hand stuck up in the air, attached to a kind of splint; the other had one foot up on the chair in front of her.  I had no idea whether I’d interact with these women, or if I’d just sit there alone, trying to distract my brain from what was about to happen.  The foot lady had a book she was reading, and the arm woman seemed serene in her own company.  I sat a few seats away from the foot lady and two seats behind the arm one, and I’d barely put my still holed bottom on the chair before the foot lady put her book aside and asked if I was okay.

I’d like to say something here about women.  It starts with a big, fat, fuck off to Samantha Brick and all those ridiculous female columnists who, in the wake of her nonsense, wrote columns with the basic premise of ‘let’s be honest, women don’t like women; we’re all competitive with each other and should just admit it.’  Who are these horrible women who hate their own kind?  I don’t know them. And I know plenty of women.  I’m not saying I’ve never met them – I’ve worked in media-related industries all my adult life, so of course I’ve come across the odd unfriendly competitive bitch, but I could count them on the fingers of one hand, and I’ve been working since I was 16.  Mostly, I find women to be supportive of each other, warm and loving to each other, genuinely pleased when other women succeed, even if it’s in the same realm as themselves (except if it’s with a substandard offering, but we’d feel that about men too). If I feel low or unhappy, or if I feel overjoyed and jubilant, my first call will always be to one of my women friends, followed by several more of them.  There are unpleasant women, obviously, but there are unpleasant men too – I’d rather not hang out with unpleasant people of either gender, but I certainly don’t see any prevalence of horridness in women over men. The Brick woman and her like-minded columnist acolytes must live in a strange and horrible parallel world and I want no part of it.

So, loath though I am to paraphrase Ms Brick, I wasn’t at all surprised when these two women I didn’t know from Eve turned out to be lovely and warm and friendly and – yes – supportive.  There have been times on wards when I’ve seen the weird phenomena of competitive pain/disease.  Mostly, it has to be said, in older women, who come over and ask what’s wrong with you and then tell you how much worse off they are in a detailed account of what’s wrong with them.  That’s not what happened here, in the Women’s Waiting Room.  Foot lady was having a relatively minor operation – on her foot, obviously – and would be out by the end of the day.  Arm lady was having the position of her arm altered in one of a series of operations for a condition I’m ashamed to say I can’t recall.  I, somewhat embarrassedly, told them what I was about to have done and we all ended up laughing about it.  I was having my bum sewn up – how could we do anything but laugh about it at that point?  We did ask each other details about how we’d ended up in the situations we found ourselves in, and we shared our varying emotions about the surgeries we were about to have, but ultimately, we kept getting back to laughing about my impending Barbie butt.  Which was fine by me.  I was sad when the arm woman got called to her operation, closely followed by the foot lady, leaving me alone to ponder, but I wasn’t there for long and I was left with the echo of the laughter of women bonded, which is always a good thing.  And not a surprising thing, as the majority of women will attest.  It’s only as I write this that I realise that in all our openness, I still didn’t tell them I’d had my bum waxed – there are some things that remain embarrassing for a long while, it seems.  

And then I was following a different nurse to an operating theatre where a couple of men – boys really; they didn’t look much older than my teen – were waiting to stick needles in my hand and my arm.  My (female) anaesthetist was there too, asking me if I was sure I didn’t want an epidural, swearing that she found it the most effective option. I reiterated that I wasn’t having one after last time, and that I’d rather be operated on awake than find an epidural needle in my back again thank you very much.  She gave up on that and the two boys who weren’t old enough to be doing what they were doing started squirting various liquids into my veins and then it was time.  The anaesthetist stood with a huge syringe of milky liquid that I recognised from so many surgeries before and I smiled, because I knew what was to come.

And here, let me take a little bit of time to talk about exactly what it was that was to come, and that I was looking forward to so much.  I call it ‘the moment’.  You know when you’re about to have surgery and they tell you to count back from ten.  If you haven’t experienced it, you’ll have seen it on the telly – they always do it.  In reality, nobody gets beyond seven; it just isn’t possible.  So you don’t have long to experience ‘the moment’; just those brief seconds between ten and seven, and to be honest, I’ve never got further than eight; I’m only saying seven in case somebody else has.  I refuse to believe anyone’s got lower unless something’s gone horribly wrong.  But we’re talking about ‘the moment’: it’s the briefest of things, it’s probably less than a second; you can barely touch it, but you know it’s there and it’s kind of like a miracle; like a sudden total comprehension of the universe; like everything and nothing makes sense and is perfect and beautiful.  And as you reach out to try to capture it, to hold on to it, to use it as something to reassure you for the rest of your life, whenever things get tough or tricky or scary or sad … it is gone.  But it doesn’t matter because then you’re asleep and there are people cutting you up with very sharp scalpels and seeing parts of you you will never even know exist, and you know nothing about any of it.  But later – not when you wake because you’ll be in a daze then, and there will be morphine and pain and more morphine, but later, when you’re starting to get well, you remember ‘the moment’ and it makes you smile.  And although the memory fades, as long as you’ve known to look for it when you get the opportunity, you’ll always have had it.  Had ‘the moment’.  Honestly, if you’re ever going under anaesthetic, remember this and look for ‘the moment’; you’ll be so glad you did.

And then it was time, and my lady anaesthetist looked at me, smiling herself, as she said, ‘right Wendy, can you count back from ten’ and I really was going to get my bum sewn up I realised, as she pushed the thick, milky liquid into my hand.  I got to eight.

Fear and Loathing in West London

 

When dawn broke on the morning of the 26^th October last year, I wasn’t sure I was ready.  I’d packed my bag, obviously; I’d not had the drinks they’d given me as part of what was called the ‘enhanced recovery programme’, which was supposed to mean you healed more quickly, but seemed to me to be just an excuse to make a person drink more revolting liquid. There are so many hideous liquids you have to drink when you have an inflammatory bowel disease and I make it my mission to avoid as many of them as possible.  Including these ones, which I finally dug out of the back of the fridge and threw away just a couple of months ago. If and when they asked me about them, I was going to lie and say they’d made me feel sick. I hadn’t actually tasted one, but I knew they would; I’d decided they would, and that made it so.

A quick breakdown of the hideous liquids – there’s barium for x-rays, there are all kinds of weird contrast drinks for other tests where you have to drink them over varying periods of up to several hours before lying in a plastic tube, or on a big metal table with machines hanging over you, and then there’s the downright evil that is Piccolax, a preparation for clearing out your bowels prior, most usually, to a colonoscopy (another joy in itself).  Piccolax is unholy – you pour the powder into cold water and watch as it heats and fizzes and bubbles in a way that can only be described as wrong.  And then you have to drink it; gallons of it, at the end of which you might as well just sit on the toilet for a day or so because getting off will only result in a few seconds of being in another room before you have to run back again.  I was so relieved when I had had enough of my intestines removed that I no longer had to take Piccolax or anything else before a colonoscopy.  All I had to do was stop eating and stop taking codeine and my bowel would empty itself all on its own.  Anyway, you can see that what I’m doing here is what I was doing on the morning of the proctectomy – digressing; distracting myself.  I’ll stop.

Before saying goodbye to the teen (see last week’s blog for that particular tale), I had a sudden panic about my bag.  I should change it, right?  I’d changed it the day before, but I was about to go into surgery; surely it was only polite to do that with the cleanest, freshest bag possible.  Now was my last chance to do that.  And what happened with the bag during the operation anyway?  The surgeon would be going through my old scar to take the rectum out – the scar that bisects my torso from breast to pubis, and which is partially covered by the bag.  So the bag would have to come off, surely, in which case what did it matter if it was yesterday’s bag or one fresh on a few hours before?  Well, it mattered to me; I was going to change it.  So I did; fortunately my many hours of pre-operative starvation meant that was a pretty easy process, but as I peeled it off of my stomach, I thought of a new worry; if the bag was off during the surgery, and the surgery was going to last at least five hours, then the stoma was bound to gush while I was under wasn’t it, and then what would happen? What if the output squirted so dramatically that it landed inside the open wound?  How embarrassing that would be; what on earth would everyone think of me, and precisely how insane was I to be worrying about what the surgeon who created my stoma in the first place (and told me he voted it his stoma of the month at the time) was going to think of how it behaved while he was busy ripping out my rectum and sewing up my anus to create my Barbie butt?  If anybody was aware of how a stoma could behave under any circumstance, and likely to be able to handle it with aplomb and absolutely no revulsion, it was my surgeon.  Any surgeon, really, but definitely my one because he’s wonderful.  Obviously.  Otherwise I wouldn’t be putting my life in his hands.  Again.

Fresh bag applied, body waxed and freshly showered, teen kissed goodbye, and I was ready to make that journey across town.  Husband drove, as usual, and we listened to the dulcet tones of Eddi Reader and Fairground Attraction singing The First of a Million Kisses, which is kind of our song.  Well, our album really; it was playing a lot when we first got together so it kind of happened by default, though there are a few Sinatra songs that arouse the same emotional response in us; that make us look at each other knowingly with a slightly cynical, ‘if we had an ‘our song’ this would be it, but we’re not really like that’ sort of a look.  We didn’t say much; Eddi crooned all that needed to be said, in her own special way.  Whatever happened to her anyway?  She was good.

The journey from north to west London doesn’t take nearly as long at 6.30am as it does later in the day, and before we knew it, we were there, and sitting waiting to see the anaesthetist.  She came in and talked me through what drugs I would have and we argued briefly about the need for an epidural.  An epidural worked fine when I had my son; absolutely perfectly – I didn’t feel any contractions and it wore off just as I needed to push.  I had thought epidurals were great, until they gave me one when I had the ileostomy surgery and I’d woken up with my legs completely numb.  Both legs.  Entirely numb.  And pain where they’d cut me open, which somewhat negated the whole epidural thing, and eventually someone came and took it out and gave me morphine with a clicker that meant I could administer it myself and that was much better so I was insistent that we went straight to that option this time please, thank you very much. Then my surgeon came in as well and reminded me again about the mortality rate for this operation being 1%, which is not exactly high, but I remember fleetingly wondering if this would be the surgery I didn’t survive.  At this point, I didn’t know about the teen’s thoughts on the subject so I believed it was an original idea, and it was a momentary concern.  This was my first ever elective surgery.  The operation I didn’t actually ‘need’; not in a new pair of boobs or stretched out face kind of way, but in an I wouldn’t die if I didn’t have it kind of way, and all the other bowel surgeries I’d had over the years had been that serious.  Maybe I’d be punished for this; for choosing a massive surgery that wasn’t entirely necessary in a life threatening context.  Was I just being a bit of a spoiled brat having it; a bit whiny; a bit, well, my life will be better if I do have it and it’ll mean everything’s all solved and finished off and there’s no going back from the baglady thing, but it’s not like I was going to be in screaming agony or drop dead in the supermarket if I didn’t have it.  Anyway, as I say, it was fleeting; momentary – there were plenty of excellent reasons to be having a procetctomy and that’s why I was having it and enough already with the self-flagellation. 

And then it was just the husband and me and those horrible white support stockings that you have to wear for major operations.  I pulled them on over my waxed legs, wondering why I’d bothered, and sat waiting for what would come next.  One thing that had changed between the two operations was that they give you two hospital gowns now, so that there’s no gaping at the back.  You put one on one way and one the other, and lo that cliché of your arse hanging out the back of the gown is no more.  I held husband’s hand and we both squeezed; this was a big operation, we’d been told that over and over again, but we’d undergone all of the pre-op stages now.  Just a bit more waiting and I’d be gone.  I felt a bit wibbly; I wanted to cling to my husband like a leech and I never want to do that.  My surgery was due in thirty minutes.  I missed the days when they used to give you a pre-med and everything that was about to happen took on a hilarious hue; didn’t matter at all.  And then the surgeon came in again and told me he had one other operation today and it was going to be really quick, so did I mind if he put my surgery back about an hour, and then he’d have no distractions because I’d be the only one he was doing the whole day.  What could I say?  I did mind a bit; I wanted to get on with it, have that needle in the back of my hand that sends you off into oblivion sooner rather than later, if only to get rid of the icy fear that was creeping up and down my spine because my body thought surgery was imminent.  I told him it was fine, obviously.  At least I’d get a bit more time with husband. 

Then a nurse came in and said she needed the room for another patient and that it was time for me to go to the women’s waiting room.  Women’s waiting room?  That was new as well.  So I had to leave husband?  Now?  Even though my operation wasn’t going to be for another hour?  Yes, I did.  We hugged, and I followed the nurse to the women’s waiting room, knowing I’d have to lose the icy fear or go completely mental, given the amount of time I was going to be waiting.  ‘Did you have your pre-op drinks last night and this morning?’ the nurse asked as we walked.  ‘No,’ I told her.  ‘I tried, but they made me throw up.’

Smells Like Teen Spirit

 

I never really expected to be a parent.  When I was younger, the presence of little siblings in the house made me sure I didn’t want to have any of my own, and once I was diagnosed with Crohn’s, I assumed it was even less of a good idea.  It wasn’t something I gave much thought to, really – I had enough to deal with.  And then I met the husband, who obviously started off as the boyfriend (actually, he kind of started off as the benign stalker, but that’s another story) and suddenly children were a subject for discussion.  And not just for discussion; I actually thought I wanted one. Obviously, it wasn’t as simple as that – there was my life expectancy to consider (short at that time); was it really fair to bring a child into the world knowing its mother wasn’t likely to be around much beyond its 12^th birthday? I don’t know why I fixated on 12, but I did.  And what about the health risks? Would a child nurtured by my body run the risk of being sick him or herself?  We did the research; the answer to that question was no – Crohn’s is not generally a hereditary disease, though of course there are exceptions. I decided I wasn’t going to have an exception; I was going to have a perfectly healthy child, no matter what the medical profession told me.  In 1988, my then surgeon advised me that he thought I probably had two years left to live.  In 1992, I gave birth to the teen.  He wasn’t a teen then, obviously – that would have made for a very painful labour.  He was an undersized little wretch weighing just over five pounds and had all the requisite fingers, toes and working organs.  He was healthy.  And the fact that I can now refer to him as the teen (though not for much longer) makes it clear that I have survived long beyond his 12^th birthday. 

I muse on this because we’re now on the night before my second surgery – the proctectomy – and as always before major surgery, I was unable to sleep.  My mind was racing; had I made the right decision?  Was it even responsible to put myself through another major surgery when I was healthier than I’d been in years?  All surgery carries risks and, ironically, this surgery was a more massive one than having the ileostomy created the year before had been.  This ‘finishing off’ operation that I was having to make sure everything went okay in the future was more of a risk than the one that had changed my life so profoundly just 13 months earlier.  But if I didn’t have it, there were other risks to consider.  Readers who have been with this blog since the beginning will remember the horrible mucus fistula that spontaneously formed rather dramatically in the early hours of a November morning.  My scar had burst open and the result had necessitated a second bag into which the smelliest, nastiest stuff had poured.  Fortunately, that had healed as suddenly as it had appeared, but not ‘til I’d spent six months dealing with its hideousness, and if I didn’t have the proctectomy, there was every chance that could happen again.  Also, with the rectum still inside me, there was always the possibility that the mild disease it suffered with already could increase and become nasty, evil Crohn’s at its worst, resulting in my needing the surgery as an emergency when my body was in a compromised state, rending the whole thing far more difficult to recover from.  There’s also a higher risk of cancer without the proctectomy, so all in all I knew it was the right choice.  It just didn’t feel like such a sensible decision as the night before I was due to have it dragged endlessly on. 

I’d written a letter to the teen a year earlier, the night before I had the ileostomy operation, but I felt the need to write another one now.  He was a year older; his life had changed from that of a boy finishing his ‘A’ levels to one of a young man halfway through his foundation course at Central St Martin’s.  He was on the path he’d planned to be on since he was tiny, and surely I should address that, as well as the general pride and joy I got from his existence?  Apart from anything else, there was that weird superstition that envelops a person at such times, at least it does if that person is me – if I wrote the letter, labelled the envelope ‘to be read if I don’t make it’, then of course I would be fine, and said letter would never have to be opened.  If I didn’t, however … well, obviously I would die on the table and all my beloved teenaged son would have to cling to, sobbing, as they lowered his mother into the ground, would be an out of date letter written about another operation entirely.  To a different, younger teen.  I tried to distinguish the second letter from the first one; clearly, he would find both when clearing out my bedside table and I’d hate for his memory of me to be that I was repetitive.  So this time I talked about how proud I was of him, how sure I was that he was on the right path, how I would be watching him from wherever I was, so it’s best that he doesn’t do anything stupid.  Quite possibly similar to the first letter, but hopefully different enough; it didn’t seem right to open the first one to check.  I sealed the envelope, put it in my drawer, and tried to find a way to occupy my brain until morning.  At about five, I gave up and got in the shower before wandering around the house slowly, trying to commit every part of it to memory; to give myself something to look at should my life flash before me in the next 24 hours.  I wondered if I should write a letter to the husband as well, but that seemed silly somehow – we’d had our lives together; he had 20 years of memories, that was surely enough for anyone. 

Leaping into the present for a moment, I should tell you that a few weeks ago, I was talking to the teen about how he’d felt when I was having the surgeries.  He told me that when I had the second one, the proctectomy, there’d been so much talk of what a big operation it was that he was actually sure I was going to die.  ‘Not really sure,’ I said, ‘Just scared, right?’ No, he told me. He was sure.  He knew I was going to die during that operation.  Absolutely knew it. I asked if he’d told anyone and he said he’d been too scared to voice it; to say it out loud.  The thought of my son, my teenaged boy, the little undersized wretch I’d given birth to all those years ago, being so sure his mum was going to die, yet unable to share his fear with anyone – that made my heart hurt.  I was shocked and upset and felt so guilty.  And then I remembered …

The day of the surgery, he didn’t have any lectures so he would have been free to come to the hospital with us in the early morning.  We had to be there by 7am, the operation was due to start an hour later at 8.  Only he didn’t.  I clearly remember going into his room, as he lay sleeping in a fog of boy smell (less offensive than it sounds – it actually nostalgically reminds me of growing up with my boy cousin) and bending down to kiss him goodbye.  He barely woke, grunting instead that he would see me later and then carrying on with whatever dream he was involved in.  He thought – no, he ‘knew’ – I was going to die; that he’d never see me, his mother, again, and he couldn’t be arsed.  Not only could he not be arsed to come to the hospital, he couldn’t even muster the energy to wake up sufficiently to say a proper goodbye.  What he swears he thought would be his last goodbye.  I got a ‘see you later, good luck’, grunt and that was it.  The next time he saw me, he’d be holding it together over my limp, lifeless body. 

He’s been a disappointing teen in many ways – he’s never behaved appallingly, rarely acted like he hates us, never even got psychotically pissed until he was legally allowed to do so.  He’s never hung with a bad crowd, brought home a girl we despised, got into terrible trouble at school.  He’s not been bullied or bully.  He’s always been decent and funny and lovely and has hardly ever given us cause for concern.  And now, here he was, making up for all of that with a commitment to teen behaviour that was beyond parallel.  Of all the teen qualities he’s never given in to, the one that he has is the love of sleep; he can sleep for hours, days, possibly weeks if he could find a way of ingesting food without waking.  He likes to stay up ‘til the wee hours, then sleep and sleep and sleep.  Even, it seems, on a day when he’s about to lose a parent. 

When I realised this, I questioned him about it – ‘you thought I was going to die, but you couldn’t even be arsed to come to the hospital to see me go to surgery, to snatch a few more minutes with my still-breathing body’ he looked at me kind of blankly.  ‘You came in and said goodbye’, he pointed out, seeming to think that was a perfectly reasonable response.  I’ll tell you this, if I had died, I’d be haunting him by now.  Moving things around in his bedroom just enough to freak him out, putting those letters I wrote in prominent places, messing with whatever designs he was working on, but most of all, I’d be making damned sure he never slept.