Thursday, 31 May 2012

Fear and Loathing in West London

When dawn broke on the morning of the 26th 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 clichĂ© 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.’

Thursday, 24 May 2012

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 12th 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 12th 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. 

Thursday, 17 May 2012

Waxing Lyrical

Sometime after I’d had the first surgery, a friend who’d had a temporary bag in the past suggested I look into joining the Ileostomy Association, which is – well, you don’t need me to explain; it does what it says on the bag.  It’s an association for people with ileostomies.  For many years I’ve been a member of a similar Crohn’s (and ulcerative colitis) association but all I’d ever done was read the newsletters; my Crohn’s has always been pretty severe, but I live with it, and I really never much fancied the idea of hanging out with loads of other people with inflammatory bowel diseases, talking about being ill. Particularly when I was likely to be sicker than most of them.  So I kept up with the new drugs and read the odd story I could relate to, but other than that, I stayed away.  This was different though; when it came to ileostomies, I was a newbie.  I could learn from those more experienced than I, so I found the website and joined online, which is when I noticed a button marked ‘forum’.  I clicked it, and my life changed.  I know that sounds dramatic, but suddenly I was speaking to people in the same position as me, people way more experienced than me, and everything in between.  When it comes to it, the doctors and surgeons and nurses can tell you a lot, but nobody knows the experience of having an ileostomy like people who’ve got one.  And while I was very lucky to have a couple of friends with permanent bags, and a couple more who’d had them temporarily, those people aren’t always available, and this forum gave me everything I needed at the click of a button.  My first post was about leakages and the advice I got on there was the advice that finally solved my initial leakage problem.  After that, there were a few people I’d ‘chat’ to on there regularly; I felt like I had a safe place to go when I needed ileostomate advice.  A virtual community I could hang out in when I needed help.  And after a while, I found myself helping other people too, which I have to tell you is far more satisfying.  When the proctectomy first reared its head, I posted on there about it and got lots of advice and opinions, all of which helped in some way.  Including a piece of terminology I shall treasure forever.

To reiterate, and if you don’t remember or don’t know, I shall tell you exactly what the proctectomy entails.  It’s the removal of the rectum and the sewing up of the anus.  That means your bum is sewn up.  There is no longer any exit site between your buttocks.  Hence no possibility of reversing the ileostomy and going back to a ‘normal’ pooing routine.  As I’ve said before, it’s the finalisation of the post of baglady.  Or bagperson.  It means it’s all forever.  It means you have what the people on the Ileostomy Association forum call – and here it comes; the fantastic terminology - a Barbie butt.  For obvious reasons.  It’s great though, isn’t it?  I guess for men it’s a Ken butt, though clearly that doesn’t sound as good, which makes this one of those cases where it’s far better to be a chick.  Because you get to have a Barbie butt.  I was going to have a Barbie butt.  And I found this out on the forum.  My safe place.  The place I was bound to go to with whatever questions I might come up with about the operation that would end with my having a Barbie butt. 

My question was about waxing.  As a woman of a certain age, I have hair where I’d hoped I never would, and a surgeon was about to sew up my anus.  Wouldn’t it help if maybe I had my bum waxed, I wondered?  It’s not as if I was gorilla-like, you understand (and apologies for over-sharing here), but there are hairs and I was concerned that they might get in the way.  In my post, I said all that, and asked if anyone had thought the same, or even had it done?  Usually on that site, you get a reply pinged back within an hour or two of posting.  I didn’t.  I didn’t get a reply for the next two days, and I was mortified.  There were people on there – complete strangers, I know, but still – with whom I’d discussed the most intimate of things.  I’d seen younger women, not yet in serious relationships, discussing the best sexual positions to get into when you have a bag, and how to bring it up with prospective partners.  I’d seen people discussing anal-vaginal fistulas that wept copiously at the most embarrassing moments, not to mention all the obvious stuff I’ve spoken of myself in this blog many times – the poo, the macerated skin, the various bizarre behaviours of the stoma itself; the stoma being a bit of intestine which is on the outside.  Intimate, surely.  Yet now, it seemed, I’d found the question that must not be asked.  The discussion that could not be had.  In an age where young women regularly wax their entire bodies (and we won’t go into that now, but yes of course I have an opinion on it, and you can probably guess what it is), nobody was prepared to discuss the possibility of a woman in her forties getting a bit of rogue buttock hair ripped out by the roots.  I toyed with taking the post down.  I emailed the one member of the Association that I have an ‘off-site’ relationship with, and whilst she found it funny, and was of course sympathetic, she asked me not to take it down, on the grounds that the whole point of the site was that we should be able to discuss anything.  She was right, I know, but honestly, every time I thought about it my cheeks (not those ones) heated up as though everyone in the world had read my post, come round to my house and was standing outside my door, waiting for me to go out just so they could point and laugh and judge me. Finally, on day 4, a woman of a similar age, who was also about to have a proctectomy, replied to me.  She said she hadn’t thought of it, but now that she had, she thought she’d probably have it done, too.  That it was probably going to make things easier when it came to stitching.  Then a second person wrote and mentioned the possibility of ingrowing hairs, and wouldn’t that make things worse considering what was already going to be going on down there? I replied that I thought it might be worth it, all in all, and there the thread ended.  Nobody ever added another post to it.  And I did what I should’ve done in the first place; I asked the lovely lady who waxes my legs and she said she often did women’s buttocks – turns out much younger women get hair there, too – and that she thought it was a very good idea, and why didn’t I check with my nurse?  I decided I’d checked with all the people I could handle checking with and asked her about the ingrowing hair situation; she said she had the perfect cream to make sure that didn’t happen and promised that if, after that, I did get any ingrowing hairs, she would come round to my house and sort them out herself, so I asked how close to the surgery I should have it done and she reckoned 5 days would give the skin enough time to recover without the hair growing back.  So, that’s what I did.  As well as fitting in all the lovely things I indulged in those final two weeks before surgery on the 26th October last year, I also had my bum waxed.  And if you’re thinking of having it done for any reason, let me tell you it hurts a lot less than the bikini one.

In my compulsion to be completely prepared for this next surgery, I became fixated on a broken spring on our mattress; how could I rest on a bed with a broken spring, when my arse had just been sewn up for goodness’ sake?  Never mind that the spring was nowhere near my bum, or indeed even on my side of the bed, it had to be rectified.  So we bought a new mattress which we couldn’t afford, and I had my buttocks waxed – as well as my legs while I was there; would’ve been churlish not to – and all of a sudden it was the day before.  It was October 25th.  And when the phone rang and it was the hospital I felt sick.  Surely not another postponement?  Didn’t they know I was spending the day chilling out at home, finishing off the book I was reading, choosing my last meal for a while (sushi, thank you for asking)?  Was I going to have to go through all this day before stuff again in another fortnight?  ‘How far away do you live, Wendy?’ was the question they asked once they’d told me they were calling from the hospital.  I told them about an hour away by car, and they said I’d have to come in that afternoon so they could take some more of my blood.  Apparently the blood that had been taken at my pre-op assessment three weeks earlier had just been found to be ‘not enough’ to cross match for my surgery the following day. It seems that years of blood transfusions meant my blood was – and still is, I imagine – a bit of a complicated mess, and that it would take several hours to process so that they would have the right blood present at my operation in case it was needed.  If I could get there in the next two hours, they should have enough time to get it done by morning, when my surgery was scheduled.  I started to protest; to question why on earth this hadn’t been realised sooner?  That I didn’t exactly have the time to lose a couple of hours of my day, because I was due to have an operation in the morning, but then I realised there was no point.  I either schlepped across town to let them draw blood, then schlepped back, no doubt during the rush hour, and then got on with what was left of my evening when I returned, or I didn’t have a proctectomy the following morning.  Obviously, we were going to do the journey; my husband had the car keys in his hand before I was off the phone.  We had to go, I had to have the surgery – I was fully waxed and ready for the off.  In less than 24 hours I was going to have a Barbie butt, and a couple of hours excised from my day wasn’t going to stop that happening. 

Thursday, 10 May 2012

(Too Much) Time To Think

With the fact that I had a huge surgery hurtling toward me in mind, everything started to go quite quickly.  I was desperate to do things I wouldn’t be able to do for a while.  I went to see a very good, old and dear friend (I hate saying ‘dear friend’ – makes me feel like an ageing West End luvvie, but it does say what I need it to) do a stand-up show that he’d been doing to much acclaim for some time, and that I’d never been able to go and see.  He was doing it for the last time at the Tricycle Theatre, and everything about it was wonderful – from the convenient parking to the joy of watching his passion and politics combine with comedy into a brilliant harmonised whole.  I loved the show, but just as much, I think, I was delighted by the look on his face when he came out into the lobby after the gig and saw that I really was there.  On the way home, though, I thought about how ridiculous it was that my friends had all come to expect me not to show up to things; how had I let my life turn into that?  Why had it taken me so long to decide to have my ileostomy?  And jeez, I couldn’t wait to have the proctectomy, the final piece of the puzzle, and complete everything, once and for all.

A much-loved (dear) friend was coming over from Australia.  She’s an actress and was doing some shows in Dublin and was popping over to London for a week’s visit before going back to Melbourne.  It had been planned for some time, and at first I’d thought I might be in hospital when she came, but happily that wasn’t to be the case.  The last time she’d seen me had been during our visit to Australia when I’d lain shivering on her couch, feeling dreadful and had to leave ten minutes after we’d arrived for what was supposed to be an evening of dinner.  We’d met many years before when I’d been pregnant with the teen and she was going out with a close (dear) friend of mine, and had become friends then.  These days she’s a mother of three gorgeous little boys herself, and she and her family had been to visit us a few times over the past few years.  Every time, I’d been in bed, and husband and teen had picked them up from the station.  Her eldest boy, when he was just three, used to hang out on the bed with me, asking questions and trying to be grown-up about my refusal to let him take my pills.  This time was going to be different.  I was going to pick her up at the station.  Dressed and healthy, with my bag cleverly concealed beneath my stylish swing dress.

On the day she was due to arrive, it was grey and rainy, but it was late September and that’s often the way in lovely London town.  And I didn’t care, because I was going to pick my friend up from the station.  Just Finsbury Park, you understand, but one has to start small.  Teen adores this friend, so he came with me and we sat in the car, with the rain beating down on us, watching the entrance to the station to see our friend as soon as she appeared.  We were there a while; it’s a long ride from Heathrow to north London and there’s no point in expecting calculations to be exact.  But she arrived eventually, her small frame and giant suitcase heading towards us as teen and I leapt from the car, teen snatching her case and putting it in the boot as we hugged and squealed as girls do, even when they’re supposed to be women.

Despite the rain, we wanted to take advantage of my being upright and not in pyjamas, so we stopped off in Crouch End for a coffee and a bite to eat, normal things I still got a disproportionate amount of joy out of doing.  I still felt like I had a secret from everybody else in there.  We were in a cafĂ© I go to regularly; the manager and I know each other’s names and she occasionally slips me a free coffee or cake, in recognition of my regular patronage (I imagine – don’t see what else it could be), but she and her staff have no idea of the bag of poo that hides beneath the picture of me they see.  Teen had just started at Central St. Martin’s, so he was telling the friend about that, and we were asking him questions and hearing about her boys, and a tv show she’d just filmed, and how the play had gone in Dublin and behaving for all the world like three people just meeting for coffee.  One day I shall take these things in my stride, but I kind of hope it’s not for a while yet.  I like marvelling at the everyday, the mundane, the magic of basic existence.  Though not so much in the rain, if I’m honest.

Some time while our friend was here, I had my pre-op assessment; where you go in to the hospital and a nurse takes your blood, and talks to you about the operation and what will happen (yes, even if you’ve already had 9 of them) and you go and get an ECG to make sure your heart won’t give out under anaesthetic and basically half a day gets used up seemingly managing to do little other than make you just that teeny bit more anxious than you were before.  But it didn’t matter in the end, because ultimately it meant my operation was that much closer.  Just over a week away, in fact.   

Our friend was out when the post arrived a couple of days later, including a letter from the hospital, which I assumed would be a few more details about what time I was to arrive, etc.  Only it wasn’t.  It was a postponement.  My proctectomy was no longer to be on the 12th October, but two weeks’ later on the 26th instead.  No big deal, you might think, and you’d probably be right, but when you’re waiting for something that big, that major, that meaningful … when you’ve been packing everything you can into your life so that you can take a few months out of it to recover and all the dates are planned to the minute, it’s more than a mild inconvenience.  More than a big deal.  It’s like somebody’s messing with your destiny.  I know now that sounds – and is – stupid, but back then it was terrible.  My previous operation – when I’d had the actual ileostomy – had been postponed by a couple of days due to a ward closure because of MRSA and that had been bad enough, but two weeks – fourteen days – they had to be joking, right?

I rang them in a fury.  I got on to some poor secretary and insisted that there must be some mistake; that my operation was going to be on the 12th, but that this letter had arrived, obviously erroneously, saying that … I tried to hold on to my anger, to be reasonable; I knew it wasn’t this woman’s fault, but really I wanted to scream at her, to demand she get my surgeon on the line, convinced that if he only knew what had happened he would remedy it.  If he just knew it was me, because he of all people knew how much I wanted this done, needed it done, wanted to be skipping through life with my surgeries all behind me and my bag hanging in front of me.  And all the time I’m thinking those things, and trying to be polite to the secretary at the same time, there’s another stream of thought; another creature on my shoulder, reminding me of my surgeon’s words, ‘Of course, if a cancer or something else life-threatening comes along, we’ll have to change your date’, and realising on some level that my surgery being postponed could well mean that another person’s life would be saved and that it was only two weeks after all, and why didn’t I just shut up and let this woman get on with her job, and eventually that was the voice that won out and I apologised for making a fuss, explained that I was just nervous and anxious and thanked her for her patience. See, underneath it all, I’m not really a bad person.  I just wanted the scary stuff over with. 

I look at my diary for last year, and on the 12th I see the words ‘Hospital.  Surgery. 7am’ crossed out and DO TAX written underneath.  It seems stupid doing tax when all you’ve earned that year are a few royalty payments on a couple of tv shows you wrote in the last century and a few pence for a kids’ book published in 2008, but I’m not Vodafone or Richard Branson and I’m not a friend of David Cameron’s so the law says that I have to.  I suppose I would’ve done it sooner if the op hadn’t been postponed, but I do like to leave the boring stuff to the last moment. Apart from that, I filled practically every minute of those two weeks – had dinners and lunches with everyone I could think of; went to the Tate with the teen, the movies with my littlest sister, lunch with my other one, and a couple of meals out with my husband and friends and no kids.  I met beloved friends in Covent Garden and wandered around shops and the market, then sat in the sunshine drinking lemon juice. I had a wonderful night watching old Buffy episodes with the teen and our close (dear) friend who introduced us to the Slayer in the first place, complete with copious amounts of chocolate and salted sunflower seeds to munch on.   

It was all great, and it did feel like a free fortnight, like a gift I hadn’t been expecting but still there was too much time to think.  To wonder if maybe the postponement wasn’t some kind of message from the universe – did I really want to have the surgery done?  Was I sure that I wanted to remove any possibility of changing my mind?  To declare myself a baglady completely and permanently; to never again have the option of pooing from anywhere but the stoma that protrudes from my belly?  All stupid thoughts, of course; why on earth would I want to go back to rushing to the toilet upwards of 20 times a day? To constant, doubling-over pain? To an insanely restricted diet? Nothing had changed in my intestinal make-up (except there was more of it missing); my disease was still there, I wasn’t cured.  To reverse my ileostomy would be to go back to the life I had no longer been able to bear.  Of course I wanted the proctectomy.  But I’d finished my to-do list – I’d been to the cinema, the theatre, comedy clubs; I’d seen people I’d not seen for years outside of my bedroom; I’d shopped and sat in cafes and even walked in the park on good days.  I hadn’t swum yet, but I hadn’t planned to do that before the surgery; that was on my ‘after’ list.  My ‘before’ list was completed and I wanted to be heading for the next one.  I did want the proctectomy, of course I did.  I just wanted it now.

Thursday, 3 May 2012

The Times They Are A-Changin’

I don’t know if you remember – and if you’re a first time reader you won’t know at all – but I was going to have a second surgery.  The ‘finishing off’ operation.  The proctectomy.  More details on that another time, but I’d definitely decided to have it; I’d seen the surgeon and got a date of October 12th and now I was living in a kind of ‘dead’ time.  I was well, but I wasn’t going to be, which is a weird position to be in.  Well enough to be doing ‘normal’ things for the first time in decades, and fully intending to take myself out of that for at least 3 months so that I could make my bag a permanent thing.  That was big.  Too big to think about for now, I’d decided, so I was just trying to do exciting things to fill the dead time.  Stuff I hadn’t done in decades.  The world was continuing apace around me.  Teen had finished school forever which was quite a milestone, and had got into Central St Martin’s to do a foundation course, which was quite a relief.  The highlight of my summer had been sitting in a coffee shop with a very old friend, rediscovered through the power of social networking, when he called to tell me he’d got the email saying he’d got in.  That was a good thing, a brilliant thing, and gave me  one less subject to fret over as August became September and the operation that had so recently seemed forever away was suddenly hurtling toward me.

I have a friend; a good and dear friend, who is a singer.  A chanteuse.  I would name her, because she’s wonderful and you should go see and hear her sing at your earliest opportunity, but I have a policy of not naming my loved ones in this blog, so I’m afraid you’ll have to follow the clues.  She’s a cabaret singer; voted one of the best cabaret singers in the world recently by Time Out New York, and I really wanted to go and see her show where she sings songs by Bob Dylan.  Actually, she doesn’t just sing them, she reinterprets them, according to the critics who lavish praise on her in print.  She was doing this show at King’s Place in London, which was definitely near enough for me to be able to go.  It was on a Saturday though, so my husband would be working, which meant I couldn’t go with him.  I asked the teen to come with me, and he was enthusiastic at first, but then got a better offer – friends of his in a band were doing a gig in a pub somewhere.  I know which show I’d rather go to, but I’m not a teen.  So I asked my friend who lives round the corner if she’d like to come with me.  Loyal readers may recall this friend from an earlier post when I described how she pointed out to me that I could empty my bag in her toilet; in any toilet, in fact, and didn’t have to go home to empty it in my own.  Obvious, you might think, but it was very early days – just a week after I’d come out of hospital, in fact – and nothing was obvious to me except that I was suddenly pooing into a bag and not out of my backside like most people.  Like I had been a few weeks previously.  She’s a forthright kind of person, and just the right person for me to have been with at that moment.  She’s also the kind of person it is always fun to go out with, so I was very happy when she said she’d come.  I told her I’d drive there, but she works at King’s Place and said that parking might be an issue, and anyway, when I told my husband I was planning to drive there, he pointed out that he had a gig in the middle of nowhere that night and would have to take the car, so that was that.  London transport it was.

I hadn’t been on London Transport since the 90s.  No word of a lie.  My Crohn’s had got so bad then that the idea of being on a tube or a bus and getting stuck in traffic, or – far worse – in a tube tunnel and needing to go to the toilet urgently had become my waking nightmare and one of my biggest fears.  I had no control; I’d had accidents before, but usually in safe, or at least manageable circumstances.  The idea of crapping myself in a tube or bus full of strangers, and being trapped with them for hours as I started to smell worse than a rotting corpse and their disgust at this stinking stranger in their midst was … well, it was not something I was prepared to risk.  We all remember the tale of the tube stuck for six hours in a tunnel.  That was my benchmark; that was what would surely happen to me if I got on a tube.  So I didn’t.  I drove everywhere, reasoning with myself that if I were to have an accident in my car, I could drive home with only myself to disgust.  I also got very good at parking and dashing into pubs and fast food joints and marching straight to the toilet as though it was my god-given right.  I really was good at it – I never got stopped or questioned.  And I never bought so much as a tomato juice out of embarrassment.

I’d been on the subway in Barcelona, but I didn’t count that.  I was about to go on the tube.  And a bus.  There was no reason not to, my friend pointed out; my bag would be perfectly fine ‘til we got to our destination at either end, and as long as I didn’t have a leak which could happen anywhere at any time, but usually didn’t, then there was no problem travelling by London Transport at all was there?  And it was far quicker than going by car.  I half-heartedly suggested a taxi, but I knew I couldn’t justify the expense.  I hadn’t worked in ages, my days as a television writer were long over, and while I had every intention of starting the uncommissioned novel that I hoped would eventually earn me some money, I didn’t feel there was much point in embarking on that ‘til the next surgery was over, ergo money wasn’t something I had a lot of.  And taxis are an unreasonable expense under most circumstances, particularly when you’re using them as an excuse not to get on a tube at Finsbury Park.

I borrowed my husband’s Oyster card.  I had no idea what to do with it, so I was fortunate that my friend lives nearby and we could meet at the bus stop, which meant I could just copy her.  I was amazed to find a computerised voice announced each stop.  That hadn’t happened when I’d last been on a bus.  I was also amazed to see how quickly the money on the Oyster card went down (thanks, Boris); we were only going a few stops to the tube station and I’m pretty sure that had been 24p the last time I’d done it.  When we got to the tube station, I found myself looking around in a kind of awe; it was very different, with no photo booths and I paused a lot, not least when I had to scan in the Oyster card again.  People were pushing past me, somewhat angrily, which I thought was a bit unfair; it’s not like it was rush hour, this was early on a Saturday night, surely most people were going out to enjoy themselves? Even my friend was getting a bit agitated, ‘Not everybody’s finding this the exciting new experience you are’, she pointed out. 

The tube was no cleaner than it used to be, and the bunch of  drunken Arsenal fans that got on at Highbury were reassuringly familiar.  And all of a sudden we were there; we walked to the venue, had a drink in the bar downstairs and before I knew it, it was time to go into the gig.  At the last moment, I realised I hadn’t even thought about my bag for a while and ran to the loo to check all was okay, which of course it was, and then I was sitting there, watching the magic of my dear friend singing Bob Dylan’s songs in a way I can’t think he’d ever have dared dream they’d be sung.  It was wonderful.  Beautiful.  I was overcome and proud and elated all at the same time.  It had been so very many years since I’d been able to do this – sit in an audience while a consummate professional of extreme talent had sung so beautifully that I’d got lost in the sound of it so that I could have been anywhere, with anyone, just awestruck by what I was experiencing.  I glanced at my friend sat next to me at one point, and her eyes were closed as she listened, equally blissed out.

Afterwards, we hung out in the bar with my talented singing friend and her pianist and had a marvellous time, just laughing and talking and eating Japanese rice crackers, and then we left, walking back towards the tube station.  The singer was going to hail a taxi (she’d earned it), and we were going to get back down below the London streets, but then my friend saw a bus.  A bus that would take us all the way to Crouch End, but still a fifteen minute walk from our homes.  We jumped on it, laughing, and I kind of loved being on a bus in the dark, watching the familiar streets go by from the height of the bus, not having to think about traffic lights or road rules or driving because that wasn’t my problem.  This wasn’t my car.  We were nearly home, and I’d been like a normal person for the whole night.  But there was that fifteen minute walk awaiting us. On the one hand, I wanted to do it; to complete a whole night of normality and walk home like anybody else would. Then again, I didn’t want to push it.

‘Imagine the look on his face if I just arrive at the door and tell him where we’ve walked from,’ I said to my friend, speaking of my husband.  He’s quite protective, my husband.  A small part of him worries that both teen and I might die if he’s not actually with us, making sure we don’t.  With that in mind, I wondered about the walk; I was high on adrenaline, but probably more tired than I knew, it wasn’t a cold night, but it was getting there by now, and most of all, I am a bit lazy. So I did what you already know I did; no matter how healthy I get, I can’t imagine I’ll ever be the kind of person who walks home when my husband is fully prepared to meet us in the car.