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 26^th 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 25^th.  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. 

(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 café 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 12^th October, but two weeks’ later on the 26^th 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 12^th, 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 12^th 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.

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 12^th 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. 

Who Loves Ya, Baby?

 

We got back from Barcelona on a plane ride of which I have absolutely no recollection.  There are photos that I don’t remember anybody taking, and of course the fact that I am no longer in Spain is also pretty clear evidence, but I remember nothing at all about that actual flight - valium coupled with the high of being with close friends is clearly a marvellous combination.  But we did get home to London, and when the Australian and the American had returned to their own continents, it was time to slide back into my normal life, without them.

So moved and overwhelmed had I been about the whole ‘watching my bag change’ interlude, that I found myself telling the whole gory story to anyone who’d listen, some of them three or four times.  ‘Hey, did I tell you …’ I’d start, and ‘Yeah, you did – a couple of times; please don’t tell me again’ was a regular exchange for me in those first weeks.  My friends responded in a variety of ways. One told me after a long and chatty lunch, ‘Look, I want you to know that if we were in some kind of emergency situation and you needed me to help, or even to change your bag for you, I would do it.  But under any other circumstances, really, no.’ Another joked that, ‘We’re all going to be queuing up now, booking appointments to watch, so that we can prove we’re just as good friends to you as they are.’  Nobody did though, not even the friend who said it.  Which was and is fine.  Extraordinary as those times were, I don’t really need anybody else to be with me when I change my bag; it is still a personal thing and I’m quite happy with the company of whoever’s on Radio 2 when I do it.  It’s usually Ken Bruce or Jeremy Vine, and neither of them seem to mind.  There are braver ostomates than I, who have made YouTube videos of their bag changes, and I’m sure they are very useful for people with new stomas, but I’ll be sticking to giving that information either verbally or in writing if you don’t mind. 

The only exception I would consider, would be my sisters.  I have two sisters – both very different; both equally extraordinary, and both the sisters I would have chosen had I been given such an option.  I’m the eldest, and my next sister was born, fairly traditionally, less than two years after me.  She’s the sister who validates my childhood; who tells me I’m not insane when I think I remember an au pair who regularly took us for walks in graveyards, and not interesting graveyards – not Highgate Cemetery to see Marx’s tomb, or Kensal Green to see Brunel’s final resting place; nothing like that.  She took us to nondescript spaces full of dead people and encouraged us to play a game where we read the tombstones of children and competed to find the youngest dead one.  Babies won every time, of course, and we’d go along with that game for hours on end.  We were just kids; kids don’t question such things, but I often wonder what the hell she thought she was doing.  Had she lost a child of her own, perhaps, or did she just have no idea what to do with a couple of little girls in her care?  She was probably only a teenager herself.  And then there was the au pair who must have been from Canada or the US, as every night when our parents went out, she’d shut herself in the dining room where she wrote, tirelessly and in pencil, scripts for Kojak (a massively successful ‘70s cop series that - depressingly – some of you may be too young to remember) which, she told us, she would only let them use if she could play the love interest she was writing for the lollipop sucking detective’s sidekick, Bobby Crocker.  I only know those things really happened, because we both remember them.

Then, when I was twelve, along came the littlest sister; my relationship with her was naturally more of a maternal one, and she grew up almost constantly worried and yet bizarrely fascinated by my health.  When I had a hole in my stomach that needed daily dressing, this little sister loved to come to my flat and change the dressing for me.  She was intrigued by the pus and gunk that spewed out of it, and was so gentle and careful as she helped me clean and redress it, it would almost make me weep.  We didn’t share a childhood, but we do share the same sisterly bond I have with my other sister. Sister one is the sensible, pragmatic type – she will sort out any practical mess I might find myself in without question; she understands how tax works, is a practicing solicitor, and makes her own puff pastry – a formidable human being by anybody’s standards.  Once, when we went on holiday to Italy together, and I ran out of painkillers, she drove all over the Amalfi coast in search of some kind of opioid, returning several times each day with various options, not stopping until she found something that worked.  Like I said; formidable.  But she’d be more likely to walk naked up Mount Everest in the dead of winter than deal with anything medically mucky.  I can’t see any circumstances under which she would think it was okay to watch or help me change my bag.  Maybe if I was doing the Mount Everest walk with her and I got hypothermia first, but even then I wouldn’t depend on it.

When it comes to littlest sister though, I realised I’d actually quite like her to see a bag change.  I suspected she’d be up for it, and I wasn’t wrong.  The first time we discussed it, husband, teen and I were staying at my mother’s, which is near where littlest sister lives.  I had to do a change and she said she’d like to come with me, but we’d reckoned without her dog.  Both of my sisters have dogs; the smaller the sister, the bigger the dog, thus my little one has a huge Rhodesian Ridgeback with the personality of a clingy child.  He’s a lovely dog, but he doesn’t like my littlest sister being out of his sight, and he wasn’t about to let her come into a bathroom with me unless he came too.  I draw the line at being watched by dogs, particularly one as affectionate as this – I didn’t fancy my stoma being licked or even just sniffed at.  There are boundaries.  So it didn’t happen that day.

A few weeks later, she was at my house, and her dog wasn’t; it was bag change time and she wanted to come with me.  We established the usual rules – if my stoma gushed, she was to leave – and into the bathroom we went.  It started well – I got everything set up, talked her through each item, took off the bag, showed her where it had been about to leak (hence the middle of the afternoon change), cleaned the stoma and was just putting the seal around the base when it did its worst.  Actually, not its worst at first; I’d eaten some jelly sweets, so what was coming out was fairly thick and easily catchable in the wipes I had a more than ample supply of.  And then it got runnier and I was getting through wipes fast and furious and she was just staring at it, almost awestruck, and I said, ‘You should probably go,’ and she said, ‘No way.  It’s amazing.  And it doesn’t even smell.’ We both giggled a bit then, and I was still catching runny output, by now on my second pack of wipes, but her attitude was kind of delighting me.  ‘It’s incredible Wend, the way it works; I had no idea.’ She said, ‘And it’s so cute; to be honest, I don’t know how you don’t spend hours at a time in here just watching it work.’ By now I was almost enjoying myself, despite being in a situation that usually frustrates me no end.  The thing is, I agreed with her.  Watching poo come out of the stoma is something I still find really fascinating, and while I wouldn’t spend hours watching it, I do sometimes go to the loo, empty the bag, and then if it’s still going, watch through the bag’s little window as it spews forth in varying consistencies and colours.  And the variety of those is amazing; truly.  It depends on what you’ve eaten, but it has crossed my mind that Damien Hirst is really missing a trick by not knowing anyone with a bag, or at least anyone who has been honest enough to talk to him about it in detail.  I once ate white fish, mashed potato and broccoli and the results were more visually compelling than a lot of things I’ve seen in the Tate.  The broccoli breaks up into tiny bright green flowers, which in this case were swimming in a thick, creamy coloured liquid, and I swear to you, to my mind that was art.  I don’t eat specifically to make the contents of my bag attractive, obviously, but when it does happen it’s a small joy in what might be an otherwise dreary day.  There are other things to remember as well – red foods can cause problems if you forget you’ve had them; beetroot or tomatoey pasta sauces can make you panic for a moment; longer if you’ve got no short-term memory, and things like sweetcorn are even worse in a bag than they are in ‘normal’ poo.  Before I had my stoma, a woman who already had one told me she could rinse off sweetcorn she’d already eaten and put it back in the can and nobody would ever know.  I solemnly promise never to try that.

Ultimately, of course, I got a fresh bag on and a third person had seen my entire changing routine up close and personal.  It was a different experience with my sister from the ones I’d had with my friends, and not just because of the stoma’s decision to demonstrate its every party piece that time.  It made me think about sisters and how if you happen to be lucky enough to have a couple you adore, they can enrich your life like no other relationships.  There aren’t many things that make me feel total abandon and pure joy, but laughing with my sisters is one of them. In the end, I think it’s about the history; the total understanding of a person who gets everything about you from the very beginning.  It’s about bearing witness.  Whether it’s to something as intimate and gruesome as watching your body secrete unpleasant fluids, or as strange and bizarre as a search for the youngest dead baby. 

What The Stoma Gave Me

 

There’s a wonderful Frida Kahlo painting called What The Water Gave Me – it’s a painting from her point of view, of her feet at the end of a bath, along with images of important people and things in her life. Florence Welch (together, I can only assume, with her machine) has written a song of the same title, though she says it was also influenced by Virginia Woolf, so who knows what she’s thinking?  Good song though. Anyway, the picture makes me think of being in the bath myself; what I see is my bag, floating just beneath the surface of the water as I bask, and when I was bathing recently, I found myself musing on what my bag has given me.  And also, what it has taken away.

You know that thing when you fancy a famous person? For me, it’s George Clooney – clichéd, perhaps, but I did first spot him when he was Booker in Roseanne, so I like to imagine that my having had a thing for him since back then gives me some kind of superior claim to everyone else’s. The point is, what we tell ourselves; we know it’s unrealistic, of course it is, but that’s kind of what gives it its thrill.  It’s unlikely that I’ll ever meet George so I can imagine all kinds of things, the biggest of these being that if he knew me, if we just spent an evening together, talking and laughing and sharing food, well then he’d realise how perfectly matched we actually are.  I can tell myself this because it’ll never happen and it’s therefore a perfectly safe fantasy (this doesn’t work with actors in British soaps, nor with members of the boy band Blue).  I can watch George in movies and heroically getting arrested for trying to draw attention to atrocities in the Sudan, and I can feel like we share something – or we would, if our destinies were different. At least, I used to be able to do that.  Before I had a bag.  Only now I realise how off-putting it would be for him to have to overcome the bag of poo that cannot be hidden when undressed, and I know our love can never be. Perhaps I do George a disservice – he was once an ER doctor, after all – but it’s my fantasy, and it doesn’t work any more.  The bag has stolen my impossible dream.

It’s stolen lesser things too, more obvious things that I’ve mentioned before – the tight dresses; the lithe silhouette; the knowledge that I am unlikely to have poo running down my stomach - but age steals those things in time anyway. It’s the fantasies that I really miss.

And then there’s what my stoma gave me.  Skating over the obvious things once more, there’s the lessening of pain; the ability to go out without needing to be within fifteen feet of a toilet; the vast amount of foods I can eat that I couldn’t before; the whole days of boundless energy; the free prescriptions.  I knew those things would happen, and they’ve changed my life beyond anything I’d dreamed, but there are other, unexpected things for which I’m almost more grateful.  At the beginning, in those first, tentative days, there was the huge relief that first my husband and my teen, and then my close friends weren’t actually repulsed by me.  That they didn’t mind sitting next to me, knowing what was going on just beneath my roomy top.  After that, there was the gradual realisation that nobody knew about my bag unless I told them, and the gentle easing back in to a world of semi-normality that I’d thought was gone for me long ago.  I got used to all that in time – not so much that it still doesn’t catch me unawares on occasion, but enough that I could get on with my life without thinking about my bag every 30 seconds.  After that, there were the surprises.

If I can go back to the Barcelona trip now, I can tell you one of the biggest of those surprises. 

A stoma is a private thing.  Nobody sees it except you and various medical staff. My husband has glimpsed it, but not studied it for any length of time, and I wouldn’t want him to.  My teen has never seen it – we’re close, some might say weirdly so, but there are boundaries, and that’s one of them. In short, nobody sees the stoma, and I assumed nobody ever would.  Which is why I was pretty astonished when just before dinner one night, the American announced that she’d like to watch me change my bag the next time I did it. I said no, obviously; that would be weird and wrong and all kinds of strange, but … ‘oh for goodness’ sake, I used to work in a hospice with complete strangers, I think I can handle my close friend’s stoma’ turns out to be a pretty good argument.  Difficult to contest.  When followed by a simple ‘I want to,’ it’s kind of impossible to turn down.  So I said ‘yes, okay, but if it starts to gush, I need you to leave’, and we had a deal.

She came into the bathroom with me, watched as I prepped everything, explaining as I went what was what, and then it came to the moment when I had to take off the old bag; when she would see my actual stoma.  It can be a bit mucky, sometimes there’s poo around the base of it, sometimes there’s poo in the wrinkly bits. It changes shape, seemingly at will, and that can be pretty mesmerising I think, but I had no idea how the American was going to respond to any of it. She bent toward it for a closer look, and remarked that it wasn’t nearly as gruesome as she’d expected, then watched as I cleaned it, handed me the new bag when I was ready, and we were done.  There had been no inappropriate gushing.  The whole thing was at once anti-climactic and emotional, and then we went for dinner.

When we told the Australian, she said she’d been thinking she wanted to see how it all worked, too, and asked if she could come and watch the next time. I started to protest again; was she sure? ‘I wiped my dying mother’s arse, and I feed my niece through a tube in her stomach’, she pointed out, which was just as good an argument as any the American had made, so once again I was left with no option.  Besides, I liked the idea of them both having seen it; if I was going to share this incredibly intimate experience with anyone, these were the people I would choose.  I did make the same deal again though – any gushing and she was to leave the bathroom at once.

A couple of days later, and the Australian was watching my bag change, just as the American had before her.  On seeing the stoma her response was almost one of disappointment; ‘Is that it?’ People clearly expect something so much more revolting than the actuality, no matter how clearly we ostomates might feel we’ve explained things.  I suppose I did, too.  I suppose that’s how stomas – ileostomy or colostomy – are perceived, and that’s what we could really do with changing.  But I don’t want to get all soapboxy here; this is about friendship and intimacy and how my stoma pushed that further than I’d ever imagined anything would. I thought the three of us were as close as could be, and thanks to my stoma, we now have something that makes us even closer.

Regular readers of this blog will know I was concerned about my salt intake in Barcelona; at home I drink salty lassis on a daily basis and as suspected they were nowhere to be found on our trip. Instead, we stocked up on salty biscuits and I spent the first few afternoons forcing several of them down my dry and dusty gullet with little to no pleasure.  Finally, it occurred to me at breakfast to try adding salt to a  plain yoghurt – the kind that’s available in every hotel breakfast buffet in Europe.  I did that, it tasted a lot better than dry salty biscuits and that problem was solved, which was good, as I’ve been rushed into hospitals in Spain in the past and it’s not the most fun I’ve ever had on holiday. Not to mention the fact that we only had five days and spending any of them trying to explain salt deprivation and an ileostomy to a variety of medics who didn’t speak English wasn’t on our itinerary of choice.

As a trip of firsts, there was also the swimming that I’d been looking forward to.  The pool on the roof was as amazing as expected, but it was in the middle of a very trendy bar full of rich-looking natives dressed in labels we could only ever afford at a knock-off stall in a Turkish soukh.  The idea of undressing down to swimwear as the stylish and beautiful sipped on margaritas around us would be daunting under any circumstances.  When you don’t really believe your bag of poo will remain intact in water, and you know your swimming costume makes you look like a lumpy, overweight oompa loompa to anyone who doesn’t know the bump is a bag, it’s a definite no-no.  None of us felt comfortable with the idea, so I didn’t get that first swim while we were in Barcelona.  I still haven’t had it actually, but I will.  The bag hasn’t stolen that from me; it’s just borrowed it for a while.

My perfect relationship with George Clooney, though, can never be.  When you go through life-saving, life-changing surgery as extreme as this, there are some things you just have to accept.

Pancake Day

I’ve had a few complaints about last week’s post – not enough poo, I’m told.  As though I’ve forgotten about poo; as if it had just gone from my not-so-pretty-as-it-used-to-be little head and I’d forgotten I was blogging about a bag of it hanging from my stomach and was just writing some kind of travelogue that you can find anywhere on the net, from any number of bloggers of all kinds of abilities and standards.  It was a fair point, I suppose, but I did it for a reason. 

Firstly, in case anyone really did feel I veered off-topic (and I’m not sure anybody really did – there are a lot of wags on Twitter, and if they genuinely didn’t like it, then they’re probably not reading any more anyway), let me tell you about last Saturday:

On Saturdays, I generally rest.  Having Crohn’s is an exhausting way of living, and even after a good week, it’s wise to take a day out and just do nothing.  Some people do it on a sofa in front of the telly, some lucky buggers probably do it sitting by a pool in the sunshine, but I live in London and I like being in bed, so that’s what I do to rest.  Obviously, I have a telly in my bedroom for when reading feels too much like hard work, but what I don’t compromise on is being in bed.  Which is where I was last Saturday, catching up on Corrie, having just changed my bag.  Usually I check my bag an hour or so after I’ve changed it, especially if I’ve been eating claggy types of foods.  Last Saturday, I’d eaten bread and cheese, followed by a Bounty bar and I’d forgotten to drink.  These are the kinds of foods that can cause problems, especially without any liquid to ‘loosen’ them, and I should’ve checked to make sure things were okay, but my cat was asleep on my thighs and as anyone with a pet will know, moving when your beloved animal is asleep on you is something you just don’t do.  It feels so lovely, having them snuggled there, clearly adoring you enough to lose consciousness with you around, that you just don’t want to disturb them.  So I didn’t.  And it wasn’t ‘til he woke up and wandered off to find somebody to feed him that I realised what my own eating had caused.  Sometimes bags leak because of user error – we haven’t stuck them down properly; haven’t noticed a crease; have put them too close to the stoma so the base gaps, basically haven’t paid attention properly during the change.  After a while with a bag you rarely make those mistakes any more, but there’s still a thing called pancaking.  Pancaking is when the output is so thick – like when you’ve eaten those stodgy foods and haven’t added any liquid – that it doesn’t slip down into the bulk of the bag but stays around the stoma itself until there’s so much of it that it forces the base away from your belly and the bag pretty much pops off.  If you’re on the ball, and thinking clearly, you can prevent this from happening by checking in time, forcing the stuff down into the bag, having a big drink and getting on with your day.  But if there’s a cat asleep on you .. well, you can guess the rest.  So I’d pancaked.  Or, more correctly, my bag had.  And it wasn’t that bad – my underclothes were a bit damp and would have to be replaced, but I wouldn’t have to change my pyjamas (I was in bed, remember) or anything.  It should’ve been a quick off with the old, on with the new, and back to Deirdre Barlow.  Except for the timing. 

When I know I’m going to change my bag, I time it carefully.  I think I’ve mentioned before that mine is an unreliable stoma with no discernible timetable; others have a different experience, but this is mine.  I take codeine, I don’t eat and I time it to the second in the hope that my stoma will stay inactive for the duration of the change.  Usually, this works.  Last Saturday, however, I didn’t have that option, and though the pancaking thing was no big deal, the change was .. well, the change was hideous;

awful; horrific; the worst change I’ve ever had, without a doubt.  I don’t want to be too graphic here – I’ve done that enough, you know the score – but my stoma was active.  Active like that day Vesuvius brought Pompeii to a petrified halt.  And when it’s active there’s not a lot you can do.  If you get it together, I suppose you could just stand with it dangling over the toilet, but I set up all my bags and stuff on the toilet, so it took me a few minutes to get that organised; in the meantime, I was piling dry wipes on it, trying to catch up with the flow at the same time as I was wiping the floor which, thank goodness, is lino.  (I live forever in fear of the carpeted bathroom.)  It seemed like it would never stop, and it was like nothing I’d ever seen or experienced.  I swear it never works for that long when it has a bag over it, and I was finally cleaned up and freshly bagged in just over an hour.  It’s okay, I didn’t fall apart or anything – it wasn’t fun, I think I’ve made that clear, but these things happen, and at least it hadn’t happened quite to that degree before.  I went back to bed, and it was as if Deirdre didn’t even know I’d been gone, so I chose to go with that same view.

That told, you’ll understand that when I talk about Barcelona and the amazing time we had, it’s pretty damn impressive stuff –at least it is to me.  So I’m going to tell you a bit more.  I’m going to tell you how we went to Gaudi’s extraordinary Casa Batllo, which is an apartment block he built, where some very lucky bastards still live – if you count having people wandering around in your hallways and on your roof for seven hours a day lucky, I suppose – and which is one of my most favourite places I have ever been in the small amount of the world that I’ve been lucky enough to visit. There is a lift – a creaky, cage-doored lift – which we did take down, but I walked up the stairs to the roof with its brightly coloured, crazily tiled, fairytale multitude of chimneys, and its views over Barcelona.  It was a lot of stairs as well, so many that the Australian took a picture of my big arse from behind as it climbed the final few, just to prove to my husband and teen that I had actually done it.  I hadn’t climbed that many stairs in more than two decades, and photographic evidence was going to be needed if anybody who knew me well was going to believe I’d done it now.  But I did.

There was the day we went to Las Ramblas, to La Boqueria – the food market that is the most divine assault on the senses I’ve ever experienced, but more than that was the fact that we went there on the subway.  I hadn’t travelled underground in more years than I hadn’t climbed more than one flight of stairs, and I live in London where the best method of transport is supposed to be the tube. Unsurprisingly, the Spanish system was far better than I remembered the London one being. 

One night, we went to a lovely restaurant for dinner where I found I had enough Spanish to explain to the waiter that the American was a vegetarian and that their habit of putting Iberico ham on the salad was not what she was after.  He understood perfectly and brought out a salad with no meat on it at all – none; and I was so proud of my linguistic skills.  Until he brought out her gazpacho, that delicious iced vegetable soup the Spanish are so famous for – in a large brandy glass, garnished with an enormous lump of meat, delicately balanced on the edge of the glass, dangling in her meat-free soup.  So much for the 6 months I spent learning Espanol at the Spanish Institute in Eaton Square a hundred years ago. 

Of course, we went to the Sagrada Familia, probably Gaudi’s most famous creation – the huge cathedral with an exterior like melting chocolate, that towers over Barcelona and will probably never be finished. It was certainly stunning, in scale if nothing else, but it was just that bit too much about religion for me; it’s a cathedral, it kind of has to be, but it’s really not my thing.  As a Jew (albeit secular), I’m somewhat freaked out by crosses, and as an atheist I don’t really engage with religious artefacts of any kind, so while I could appreciate its beauty on one level, it didn’t really touch me as the other buildings of his had, and I did find myself spending far too much time staring, gobsmacked, at a statue depicting Herod’s smiting of the firstborn.  In the end, I was very happy to cross the street and tuck into a sub-standard sorbet at an over-priced pavement café.

This almost brings my tales of Barcelona to an end, but I can tell you that all in all the trip was a kind of miraculous, perfect oasis of a thing that I can keep in my mind forever, and I will always appreciate that.  While I hope for more such adventures as I continue to improve my life post-ileostomy, it’s important for me to cherish them and to remember them in detail because every so often – and probably more often than I’d like – days like last Saturday happen. So, obviously I never forget about poo, but I think you’ll agree that, just sometimes, it’s okay not to write about it. 

Three In A Bed

 

So there we were in Barcelona – the comatose American, the gradually relaxing Australian, and me, with enough bags in my hand luggage to last a month, and just about enough Spanish to tell the taxi driver where we were going.  Once we were in the cab, American fell back to sleep and Australian and I started to get excited; we were here; we were together – this was going to be amazing!  She was telling me they’d had fun in Amsterdam, and that now we were going to have even more fun – we couldn’t wait to see the Gaudi cathedral, the park, the … wait a minute, this couldn’t be right.  We were driving up a very broad street with incredibly posh shops on either side – there was Prada and Gucci and Manolo Blahnik .. this wasn’t ‘us’.  We weren’t going to be able to afford a cup of coffee around here, let alone a selection of tapas.  We’d taken accommodation advice from my lovely sister, who doesn’t tend to scrimp when it comes to holidays and it was starting to look like we’d done the wrong thing.  She’d assured me we’d be fine, but my lovely sister’s idea of an affordable holiday and ours were looking like quite different things.  I felt sick.  This was all my fault.  Australian put her hand on mine, ‘It’s okay,’ she said, ‘I’m sure it’ll be fine.’  ‘Ok,’ I replied, wanting to believe her.  ‘And we can always get on buses and trains if it’s not.’ She added.  I didn’t want to get on buses and trains – I don’t do buses and trains, at least I didn’t for all the years I had to be within running distance of a working toilet.  I hadn’t thought about doing it since I’d had the bag, and I didn’t want to do it for the first time in a foreign country.  But I was trying to feel good about everything, we both were, even when we arrived at the hotel and saw a bunch of young Spanish people outside, shouting and carrying placards.  Our hotel was so posh there were ordinary people protesting outside it.  We asked the taxi driver what they were protesting about, but he said it was nothing and that we owed him fifteen euro, which wasn’t too bad we thought.

We dragged our cases and the American into the lobby and checked in.  A nice, handsome Spanish man took our luggage and hefted it onto one of those fancy schmancy cage things, which he pushed ahead of us into the lift.  Pulling the American along with us we followed him to our room.  Oh Lordy, our room.  He left us in there with our cases and we stared at each other in horror.  ‘Didn’t we book a room for three people?’ I said, knowing that we had.  ‘Yes,’ said the Australian, ‘I specifically asked for a room for three people, and we’ve definitely paid for a room for three people.’  We weren’t, however, in a room for three people.  We were in a room that was only just about built for two people.  There were two beds close together and a kind of camp bed squashed in alongside them.  At the end of the beds was maybe two feet of space, which was now filled with our suitcases.  Then there was a window with a blind covering it.  The blind didn’t move; it had gaps through which the sun would presumably shine when it was daytime.  Behind the beds was the bathroom and when you went in there and turned the light on, the whole of the hotel room lit up.  The American went and lay down on the camp bed and was instantly asleep.  The Australian and I decided the best thing we could do was go for a recce; see if there was anywhere nearby we could afford a drink of some kind, and get a feel for the area, aside from the posh shops and the protestors.  We weren’t optimistic, and as we went down in the lift we were wondering if I should’ve just met them in Amsterdam, where we’d all been before and knew a bit and where at least, no matter how things were going, we could always hit a coffee shop and get thoroughly, irredeemably stoned.  Trying not to sigh, desperate to find the positive, and babbling a bit mindlessly, we walked out of the hotel and looked across the road and were stunned into silence.  There, reaching up into the starlit sky, was some mindblowing architecture; we were practically opposite a Gaudi building, though we had no idea which one.  Not that that mattered – it was amazing (it was La Pradera) and we could both feel ourselves relaxing.  We ran across the road, and found a beautiful seat wrapped around a streetlight – a Gaudi seat.  We sat in it, swayed our legs and squealed with joy – we had done the right thing!  Who cared about the room, when there was all this outside!

My lovely sister had told us about a restaurant near the hotel where she and her wife had eaten breakfast every morning and we set about trying to find it. She hadn’t been able to remember what it was called, but she’d given me a pretty good description of where it was and we located it surprisingly easily.  We sat down and found that we could afford both the food and the drinks – we were in the right place.  My sister had steered us well.  Australian drank coffee and I had a granita, we nibbled on some tapas and were happier than we’d ever imagined we could be just an hour earlier.

Back in the room, we got busy doing the glass half full thing.  Everything would be just dandy.  I was painfully aware that I’d be up at least twice in the night to empty my bag, and knew I’d be floodlighting the room each time, not to mention that the toilet was only inches from the beds and therefore every sound would be heard – from the tearing of the Velcro opening to the splatting out of the contents.  Of course, that also meant I’d be able to hear anybody else going to the loo too, but I never think of that – what they do is normal, usual, the way things were planned when humankind evolved.  What I do is a whole other, far weirder thing.  But these two women were people I loved completely; people I’d been as close to in my life as I’d been to anybody.  Closer.  If anyone could cope with whatever weirdness my new-build plumbing system had to offer it was them, right?  If husband and teen could handle it, so could Australian and American, I told myself. 

Despite the ridiculous proximity of our exhausted bodies, and the very drugged frequent awakenings of American asking, ‘what’s going on?  Where are we?’ we made it through the night relatively unscathed and by morning there were three of us aware of our surroundings, and none of us were impressed.  We realised with disgust that the hotel wasn’t even bothering to pretend this was a room for three – there were only two glasses in the cupboard; only two sets of towels in the bathroom, and only two toothbrush holders on the sink.  Australian and I were trying to be reassuring by raving about the restaurant and the closeness of the Gaudi buildings, when American stood up and announced that she was going to make up for her inability to do so much as get undressed before getting into bed the night before by going down to reception and getting us a proper, fabulous room that was actually suitable for three people.  She was going to get us the room we’d paid for.  Armed with her phone, on the end of which was her cousin who spoke fluent Spanish, she marched downstairs with us behind her, watching in awestruck silence. 

She was brilliant. She smiled, she cajoled, she explained, and she took no shit.  Their first response was that all the rooms were the same, but she wasn’t having that; she was an American; a New Yorker; she knew how to get stuff, and she had no intention of being fobbed off.  Within fifteen minutes a slightly cowed Spanish boy was showing us a fantastic room spread over two floors – a suite, no less; the top floor had a huge bathroom and a massive space that was big enough for all our luggage and still had room for all three of us to get changed at the same time, should we choose to.  Downstairs was a large wall of windows and three beds with a decent amount of space between them and room to walk around them with ease.  Okay, one

of them was still a camp bed, but we didn’t really mind that.  ‘I think we’ll take this one, thank you so much,’ said the American, at which point the Spanish boy looked happier than if he’d just won the Euromillions.  He eagerly hurried back to our old room to collect our luggage and as soon as he’d left, we rolled around on the beds, laughing and shrieking with joy.  By the time he got back with our things we had calmed down and gave a good impression of real grown ups as we thanked him, tipped him, and shut the door behind him.

It was time for our first breakfast, there were Gaudi buildings just a walk away, we had a room that was heavenly, and none of us were comatose.  We had five more days of this, and we were ready. 

I just had to change my bag and we could go.