Wednesday, 6 November 2013
I wrote this blog back in July, but didn’t post it. Somehow it felt too raw, too personal; I’d been enjoying writing light, humorous posts about language and the career I used to have writing satire. And this wasn’t that. This wasn’t me being quite healthy, and by the way I have a bag. It was more like the pieces I used to post – when the hard stuff was going on. Now, with a bit of distance, it feels ok. So anyway – here it is:
I have a hole in my stomach. I’ve had a hole in my stomach before. I had that first one for two and a half years, and finally decided to let the surgeons sort it out when it got to be the size of a kiwi fruit and a piece of chicken fell out of it. Of course, things weren’t quite that simple – when I got to the hospital, I found that where I thought I was maybe a bit thin, they were of the opinion that, at less than five and a half stone, my body wasn’t strong enough to withstand surgery. So I stayed in hospital for a couple of months while I was fed through a main artery in an effort to fatten me up in readiness for my operation. It was a kind of medical Hansel and Gretel situation, only without the cage. Or the nasty witch. And with cigarettes. This was the 1980s, we were allowed cigarettes in hospitals then, and thank goodness. I gave up smoking long ago, but one should never underestimate the ice-breaking properties of sharing a disgusting habit.
When this current hole started, I was pretty sure I knew what it was, but I decided to employ a strategy of pretending it wasn’t happening, coupled with occasional periods of deciding it was something minor. Just an abscess, or a boil type of thing. People with Crohn’s get those. I get those. But after 3 months of it not healing, my GP convinced me to tell my Consultant, who booked an MRI, which went on for an hour and a half, and during which I fell asleep. An MRI is that loud, bangy, claustrophobic tube thing. And yes, I did fall asleep in it – I’m hard, me. Last week I went to get the results and my Consultant told me to guess what it was. I guessed it was a fistula. It was. It is. A fistula, for the uninitiated, is an impressive act of the body. When a piece of intestine breaks down and starts to suppurate, the body knows that if it just allows the suppurating bit to weep where it is, lots of other bits will get affected and infected and in short order everything will go septic and the person will die. Bodies want to live, so what mine has done is form a track from the site of the suppuration to the surface of the skin, and that’s where the nasty stuff leaves the body. Through a hole in the stomach, onto a dressing that is best changed every day after a shower. And there we have the miracle that is the fistula. Only this particular miracle rarely goes away on its own. Historically, we know that on my body it most definitely doesn’t go away on its own. At this point, it’s very small, and not much of a bother, so my instinctive reaction is to do nothing. Of course, this was my instinctive reaction in 1985 and that didn’t turn out so well. This time, though, my Consultant is in agreement that no decisions need to be made just yet. We’re going to wait until late November before we make any decision. I say ‘we’, because he says ‘we’, but we both know it really means ‘I’. Me.
He tells me that he knows it’s not sexy. I point out that half an inch below it there’s a bag of poo swinging freely. That my stomach has so many scars, anybody who saw it would believe me if I told them I’d been the victim of a shark attack. On top of that, I’ve been married for 22 years. Sexy is not really an issue for me.
I’d gone to the hospital knowing I’d have to have surgery at some point. Actually, my biggest concern had been that Kate the Princess would have had her baby and left by the time of my appointment, because I go to the same hospital where she gave birth and I needed to park. But I’m digressing. Which is what I kept doing when I was with the Consultant, because the one thing I really didn’t want to do was Discuss The Options.
Ok, so The Options. I thought there was only one. I was prepared for that one. The operation. But, as it turns out, there is another choice – the biologic. Biologics are new-ish, and powerful, and nobody knows their long-term effects because, you know, the new-ish thing. I have taken the two biologics that are used most often. The first one worked for a bit then sent me into anaphylactic shock – fortunately, I was in the hospital at the time, so a crash cart was handy, as was a nurse who acted swiftly enough that the crash cart served only to make me think I was in an episode of ER without George Clooney. So I stopped that one. Then the second biologic came out, and I got a ‘compassionate dose’ before it was actually passed for use in Crohn’s. That worked quite well for 4 years, and then it stopped working, and then I got the bag, and then I thought I probably wouldn’t need any more operations, and I certainly hoped I’d seen the back of biologics for the foreseeable future. There’s a new biologic now, and I can take that. In case the fistula has been caused by active Crohn’s. Except that I had a flare-up a while ago and it’s gone now, but the fistula hasn’t. That doesn’t mean there isn’t any active Crohn’s, but it does mean it can’t be that bad, as it’s not affecting me in any noticeable way. The fistula might also be caused by an adhesion – a common post-operative issue with bowel surgery. The MRI couldn’t tell what’s causing it. We don’t actually know why there’s a hole in my stomach. I told the Consultant I’d prefer the operation please, thank you very much. I found the biologics very debilitating, I don’t think I’m having a flare-up, and if I do have one bad enough to need biologics one day, it would be better if I haven’t exhausted all those available. Also, I’d be on them for an unspecified amount of time. An operation will be big and all that, but I know how to do them, I recover from them, and it’s over. It’s a finite kind of an issue. And anyway, we don’t have to even think about making a decision until the end of November, we’ve already agreed that. With The Options discussed, I left and drove home.
At home, I was on my own. Husband was working in Manchester and Son was staying at a friend’s overnight. Son had come to the hospital with me, we’d gone for a milkshake afterwards, and I’d gone home while he’d gone to his friend’s place. He knew I was fine, I was smiling, everything was good. And I wasn’t really on my own because there’s the cat.
And anyway, I was fine. I had dinner, I watched telly, I went on Twitter and didn’t mention the hospital, and then I went to the bathroom and sunk onto the toilet seat, sobbing. Crying like a toddler does – big, abandoned wails and howls. I wasn’t fine at all. I don’t want another surgery, and I certainly don’t want to put any more powerful biologics into my body. I don’t want to be sick any more, and the sudden realisation of that that was making me bawl from the pit of my soul. And then it was over and I was fine again. Maybe 5 months of a hole in my stomach had needed to be purged. The next morning the sun was shining and I danced around the kitchen with the radio on, emptied the dishwasher, had a coffee and a banana, and then I got in the shower and did a full on Glenn Close Big Chill sliding down the wall sob-fest all over again. I think maybe I’m not fine. And what is it about the bathroom? I was alone in the house, I could have howled like a werewolf during a full moon in the living room and only the cat and the goldfish would have heard me. As it was, I left the bathroom door open both times I fell apart and the cat looked at me with something like disdain as I made ridiculous noises and my face grew puffy. He couldn’t help looking at me like that, I suppose - he is a cat. And I don’t think he meant it, because he spent a good part of the next two days dropping half dead frogs at my feet.
Oddly, the hole in my stomach is where my tummy button used to be. Before my scar kind of healed over it, so that it almost looks like it was never there. Now it looks like it is there, as if my body didn’t like that it went missing. It was born with a tummy button, which is, when you think about it, a physical reminder of how we survived through to birth in the first place, so it’s not unthinkable that my body would want it back. It doesn’t, of course – it just wants to let the pus out of my body without it killing me.
I’m fine with that. I’ll deal with the other stuff in November. And take a deep breath every time I go to the bathroom.
Monday, 20 May 2013
There’s been a lot of anger on the internet lately – particularly on Twitter – about people’s use of language. Mostly I don’t mind what language people use as long as they’re not being stupid about it. Ultimately though, I’m unlikely to be the person tweeting you and claiming to be the arbiter of such things. There are 3 pieces written by people I like a lot that cover this subject brilliantly, and to which I don’t need to add anything.* Except to say that, as a writer and believer in free speech, I’m mostly happy to let people use whatever language suits them.
But a few nights ago – might be longer, might be a week or two; I’ve been taking pethidine a fair bit lately - I saw a tweet that I really did object to. Someone I follow was discussing somebody who had done a bad thing with somebody I don’t, and I read the whole thread, only to find the person I don’t follow – and never would now –had tweeted that this ‘bad’ person was ‘a colostomy bag filled with hate.’ Actually, I should put that on a line of it’s own; it’s that infuriating.
‘A colostomy bag full of hate’
Where to start? What did this tweeter think she was doing? Did she think she was being funny? Clever? Original? Using her 140 character limit to its best effect? Well, fuck you lady tweeting woman, because you’ve just found the bit of language I am offended by.
You’ve just reminded me why I started writing this blog in the first place, and why I shouldn’t stop, and why I should try to get people to read it from the beginning. You made me see that I’ve failed in my mission to normalise what’s happened to me and thousands of other people like me. Obviously, I realised my one little blog wouldn’t change the world, but I had hoped I was part of something bigger; a little ripple in the sea of changing understanding.
You seem to honestly think that this is a disablist bit of language nobody will mind you using. Well they will. I do. Would you say a wheelchair full of hate? A prosthetic leg full of hate? No, of course you wouldn’t. I don’t think you’re stupid. But you think this is ok. And I think I know why; I think it’s because a colostomy bag is full of poo. And poo is funny. Well yes, poo is funny. Taking the piss out of people who discharge it in a different way from you is not your place. I can do it. Anyone with a bag can do it. My friends can do it to me, but you can’t. You can’t arbitrarily use it as a term of derision. As a way to sneer. As the most hideous way you can think of to describe a person.
Obviously, I could have taken this woman to task at the time, but I don’t know her, she doesn’t know me, and it would come at her out of nowhere. Maybe writing a post about it, and not giving her the right of reply is wrong. To be honest, I don’t care; her tweet is just fuelling the fire of what really concerns me.
I’ve not blogged on a weekly basis as I used to because I felt my story was told. Every tiny scary, terrifying, gory, uplifting detail of deciding to have a bag, to having the surgery, to having a second surgery to make it all permanent, has been laid out before you, should you choose to read it. I’ve done my little bit to effect some kind of change, and I do know it’s just a tiny bit. But now I find myself wondering what the point was, because the prejudice clearly remains. The concept of a bag as something hilarious and disgusting lives on. My tiny bit is nowhere near enough.
I’m told it was cited on tv as something hideous that could be avoided by eating correctly - by a well-known celebrity doctor, no less. I didn’t see it myself, but have tweeted him many times asking if it was true, if he really did that, and he hasn’t replied. A doctor! Telling the world of people who watch his show that having a bag is disgusting. If it is true, then we baggies have a lot further to go than we thought.
A young woman I talk to on Facebook – a beautiful, funny, intelligent young woman – was being chatted up in a pub not so long ago, and as it was going so well decided she would disclose her status as a bag wearer. And the young man who was chatting her up, who clearly found her attractive and engaging, responded in the way we would all hope nobody would ever respond. He told her he thought that was repulsive, that she was repulsive, and walked away, rejoining his mates at the bar and doubtlessly telling them how very repulsive this gorgeous, brave, lovely young woman was. She, of course, was devastated. He, of course, was scum. But maybe because of ignorance. Maybe because he doesn’t know enough. Maybe because nobody he knows or cares about has a bag. Or maybe he’s just scum.
I don’t think the tweeter who used the line that caused me to write this post is scum. I think she’s just ignorant. I think she hasn’t read all the information that is out there, and why should she have? I don’t expect her to know. I do expect her to think though; to be aware that there are people out there – out here – with bags who would really rather they weren’t used as an unfunny line that the user thinks is terribly clever. It isn’t clever. It’s horribly unoriginal and really rather dated. I remember people making colostomy bag references when I was at school, and that was in the 1970s.
For me, my bag is a life-saving, life-changing, amazing, miraculous thing. Most of us who have them have had our body replumbed as a way to avoid an early death. And think about that; what an extraordinary thing medicine has created, that a body’s plumbing can be diverted - rerouted, so that it comes out from a whole other place - so that people don’t die. Not only do we not die; we go on to live lives that we’d forgotten existed. If you see us in the street, you won’t be able to tell we have bags of any kind. All you’ll see is someone apparently living a normal life. What we’ll know is that we can only appear to be doing that – actually be doing that in many cases – because of our bags. How can that be disgusting? It’s as disgusting as a new heart, or a new kidney, or … well, you get the point.
Of course, in the end, I know it’s a bag of poo. To me, it’s ‘just’ a bag of poo. No big deal. To too many people, still, it’s a filthy/comical/unthinkable bag of – euch – poo. How I’d love to see that change.
Regular readers will know that I have an ileostomy, and not a colostomy, but even good friends frequently get that wrong; many people don’t know the difference, and that’s fine – I want to normalise bags of poo in all their forms - you don’t need to know the detailed differences between the two. I do, obviously, or I’d end up ordering the wrong supplies and the results would be very messy indeed, but otherwise I couldn’t give a toss. I don’t mind if you don’t know the details of what it does, or how it works and I really don’t care what you call it, as long as you don’t use it as some form of insult. If you’re going to use it in a joke, and you don’t want to offend anyone, there’s only one rule, and it’s the same rule that I’d apply to any joke – for fuck’s sake, make it funny.
*links to those three excellent pieces about language on the internet, complete with twitter names. Recommended reading:
Thursday, 14 February 2013
In the mid-90s, having found myself on a hiatus from surgeries where huge chunks of my bowel got hacked out, and having survived giving birth to a very small boy, I was writing quite a lot for radio. A producer asked if I had any series ideas, and I came up with Trust; a satire on the NHS. Remember satire? It has a long history, and was still alive and well during the Tories’ last, endless reign, and then it seemed to disappear. It’s not gone exactly, I think it just hides, masquerading occasionally as drama, when we’d expect it to be comedy. Certainly, we have to look a lot harder to find it. The dictionary describes satire as ‘the use of wit, especially irony, sarcasm and ridicule, to attack the vices and follies of humankind’. I think we’d all agree that’s a good thing.
Anyway, I digress – whatever satire is or isn’t, and whether it is or isn’t represented adequately on television or radio today, is not my point. My point is the story of Trust. The simple premise of Trust was that a corrupt hospital manager was brought in to do a kind of top-down reorganisation of the hospital he was charged with running. Sound familiar? Maybe so, but bear in mind the first series went to air in 1995. This nonsense of which I wrote was made up. Silly. Satire, with the emphasis on the ridiculous.
An aside, at this point. I, like many other leftie types, have often acknowledged that Labour was to blame for the first wave of the ludicrous amount of managers, without any medical knowledge or expertise, brought in from the business and industry worlds to take charge of the NHS and its treasures. However, looking back at Trust - which I wrote, but clearly don’t remember all that well - I have to accept that that’s wrong. I’m wrong. All of us who admit to Labour’s part in starting the regime that is now becoming the end of the NHS, are not quite right. I was and remain no Blair fan, and he did definitely make things worse on that score, but clearly – and apologies for sounding like Cameron in reverse - the Tories started it. I may have had my own vision of where it was going, but I certainly didn’t make up NHS trusts and hospital managers. I extrapolated from what was there. And it was put there by the Tories.
It wasn’t the greatest writing in the world, I don’t imagine. It was quite knockabout with scenes of total lunacy at times. The basic premise was that the hospital manager – played by a brilliant actor, whom I won’t name, because I never do in this blog, but it’s easy enough for you to find out – met up every week with the managers of other hospitals to bid for surgeries; the hospital offering the cheapest deal got the operation and the aftercare that went with it, and made their profits from that. Our evil manager took to undercutting the other hospitals on surgeries for patients who might not make it through their particular procedures, then didn’t do the surgeries and ‘let them’ die. The relatives were told their loved one had died on the operating table, and our ‘hero’ made the hospital finances look good, whilst pocketing a nice chunk of change for himself. He managed to blackmail enough of his staff for the scam to work, and from that seed grew a whole series with, as they say, hilarious and horrifying consequences. Hopefully. Certainly, the reviews were good, including – and this may well have been the highlight of my career so far – one in the British Medical Journal, which was quite long, complimentary in parts, and ended with the warning that such a hospital manager as the one I’d invented may well turn up at the reader’s place of work any moment. (You can read a bit of it here.)
Back then, some of the things that ended up in the series I thought were completely ridiculous. There were drug companies bribing staff to use only their products; we had wards running out of syringes and dressings and having to make deals with other wards to get the apparatus they needed. When I was in hospital in 2010 I saw that actually happen. Only it wasn’t syringes or dressings, it was giving sets, which are used to give patients fluids intravenously. There weren’t any on the ward and they had to swap something they did have with another ward to get them, so that patients waiting for iv fluids could get what they needed. In Trust, we joked that the NHS would become all about money.
Happily, a second series was commissioned, and we had to come up with a new scam. This time we went with organ harvesting. Illegal organ harvesting, where patients were kept alive, when that wasn’t exactly their care plan, and their organs harvested without the relatives’ consent or knowledge, and before they knew their loved one was ‘dead’. The organs were then sold on, and again, our hospital manager and his accomplices profited, despite the accomplices’ many attempts to bring the whole situation to a halt. None of this sounds funny, I realise that. Back then though, it did seem crazy and impossible, and led to the requisite jokery its time slot demanded.
And then, halfway through the airing of series 2, Trust was pulled. There was to be an election that year, you see, and the BBC couldn’t be seen to be transmitting anything that may influence the way that election would go. Infuriating, obviously. Stupidly complimentary in a way; the merest suggestion that my writing could be that powerful. That someone lying in a late night bath would hear my words coming from the mouths of wonderful actors and think, fuck me, I’ve voted Tory all my life but I’m not going to any more because of this comedy, satire thing I’ve just half listened to. That they would then wash their armpits with renewed vigour and a whole different take on life, thanks to our little late night show. Nonsense, of course. But it happened. Which was okay, we thought. The producer and I, both of whom had grown to love our programme and all who worked on it, worried slightly that listeners would be doing other things over the summer when the series returned. Things like going on holiday, or spending balmy nights in their gardens listening to music, rather than words. We needn’t have worried, though, because Trust never did return. I still have a letter somewhere from the then controller of Radio 4, telling me that now that Labour had got into power, the destruction of the NHS was no longer a concern. Not a worry. It would all be fine now, because Labour were in charge. I did honestly sneer back then; I’d like to think it was because I didn’t believe it; because I knew Labour under Blair was nothing like the Labour of old, but it was a long time ago and I might just have been cross that I wasn’t going to get another series.
Fast forward 15 years and my son, 20 years old, is at the wrap party for an indie film he worked on. Coincidentally, and somewhat age highlightingly, the director’s mother and I had worked together in an advertising agency a hundred years ago, and our children – I’m not even going to think about how old this tale makes me feel - were talking about said coincidence with a couple of the actors. One of the actors is dating the son of the brilliant actor who played my evil trust manager, and my son tells this actor of this similar coincidence. My son tells her his mother also worked with her boyfriend’s father. On a radio series about the NHS. She looks at him, and says, ‘It wasn’t Trust was it?’ My son confirms that it was, indeed, Trust, and she tells him that her boyfriend plays it to her often, citing it as his father’s finest work. Which kind of brings the whole story into a nice circley thing, makes me feel very old indeed, and gives me the comfort of imagining that if I ever write something about kids in their 20s, I could probably get a couple of this country’s most promising young actors to be in it.
I don’t know if Trust was that actor’s finest work; certainly I’ve seen him be extraordinary in many things, but I’m just happy that somebody who knows a lot about him would think that it might be. I occasionally worry that it may end up being my finest work, but l should probably talk to a therapist about that.
I’d love to have another crack at a satire on the NHS. I’d love to revive Trust, if I’m honest, and find out what these characters would be getting up to now – older, wiser, and way more experienced at the evil they can do. Now with added legislation to help them, and influential people happy to turn a blind eye in return for a favour or two. I’m not sure I could come up with anything more outrageous, more horrific, less compassionate, than what is actually happening, though. I’m quite sure I never would have dreamed that responsibility for universal health care would no longer be a government duty.
I’m not sure if we can save our NHS. I am pretty sure it will never be the glorious thing it was when our generation was growing up, and I seriously doubt our children will get healthcare free at the point of use for the rest of their lives. I fear for people who, like me, have chronic illness and use the NHS and its services on a daily basis. For the terminally sick, the disabled, and the old. And never would I have imagined that such an important institution would slip through our fingers so quietly, so unnoticed, so unreported as it is. (See a an excellent overview of what is happening here, by committed campaigner, Marcus Chown)
We have to keep fighting, protesting, signing petitions, writing to MPs, screaming at Cabinet Ministers, doing whatever the hell we can to halt the demise of our NHS. I hope we can. I hope we will. I know it’ll take a lot more than a bit of satirical radio.
Thursday, 17 January 2013
I’m not a girly girl. I’m not a girl at all, actually; in a few weeks I’ll turn an age that gives me a far more up-close-and-personal view of 50 than I ever imagined I’d get. Not because of the whole Crohn’s, lots of surgeries, given 2 years to live in 1988 thing, but more because when you’re young you can never imagine being any age other than one a few years ahead of the one you are at the time.
When my mother was the age I’m about to be, she became a grandmother to my son. Fortunately – as far as I know, at least – that’s unlikely to happen to me. Although, given that I’ve got 12 months of being that age to go, I probably shouldn’t make such predictions. I do have a healthy, intelligent, ambitious 20 year old son, and accidents can happen, as we all know. But I’m gonna’ assume not. The thing is, I thought my mother was at a perfectly appropriate age to be a grandmother when I turned her into one. Now I’m about to get that close to 50 myself, it doesn’t seem anything like old enough. None of which is my point, really.
My point is about being girly. I’m not sure what other word I can use – feminine doesn’t cover it; I’m definitely feminine. And feminist. And female. For many years, I was a girl, but I have never been girly. To me, being girly is not an age thing; I’ve met women in their 90s who are fantastically, gorgeously girly; it’s about make-up and clothes and … prettifying. Maybe that’s it – I’ve never really been a prettifier. A girly prettifier.
I usually wear lipstick if I’m going to leave the house, but not always. I sometimes just forget. In the same way that I forget to put on earrings or my watch. I’m a bit of a twat like that. I like to wear nail varnish too, but that’s become an almighty faff out of all proportion to the pleasure I get from seeing funky coloured nails on the end of my fingers, of which more later. Sometimes, when I’m going on a night out somewhere nice – fancy, or celebratory, perhaps - or if I just feel like going that extra few centimetres, I might put on a bit of mascara; at a push I’ll draw a line on each eyelid with a coloured pencil designed for just such a purpose, but that really is pushing the boat out for me. It’s as far as I feel capable of going. Show me face powder, foundation, blusher or any of those other things people put on their faces, and I’m at a loss. I feel like I don’t have enough face to fit them all on, even if I knew how to apply them and where exactly they’re supposed to go.
I’ve always been like that, except for a couple of years during my teens when I flirted with being a New Romantic. Back then, however, I went to the Blitz club in the West End, so ‘normal’ make-up wasn’t what I wore. My best friend and partner in sneaking into clubs at 15 and underage drinking crime, taught me what to do, and what we did was wear a lot of white panstick that made our teeth look green in anything but low, dark, club lighting, and a lot of black around the eyes. It wasn’t really a lesson for the future, but it was fun at the time.
Don’t get me wrong; in my head, I’d quite like to be girly. I’d like to be the kind of woman who wears heels all day, has well-groomed, tv commercial-worthy hair, looks stylish in whatever she wears, whether it’s jeans, leggings or a Prada suit. *Pauses to get back onto bed after falling off laughing at the idea of ever owning a Prada suit* and has permanently perfectly waxed pins. I’d like to be all those things if it took no effort, and didn’t make your calves ache like they’ve been stretched on a medieval rack for seventeen days. But frankly, I can’t really understand how anyone can be arsed. Even if they don’t have the obstacles I do.
My Jewish heritage has blessed me with extra hair where I’d rather there was none, whilst years of taking steroids every day, has left me with lank, thin hair where my thick, glossy mane should be. As my pubic forest creeps further down my thighs, on a journey that I’m convinced will only end when it reaches my ankles, and the hair that should be on my head finds it prefers life on my pillow, all I’m left with is an awareness of the cruelty of irony that I could’ve guessed at without such blatant evidence, thanks anyway.
But back to the nail varnish. I’ve always felt I had that sussed. Despite my suppressed immune system, multiple surgeries and all the joys that chronic disease has to offer, my nails have always been healthy and strong. They grow fast and don’t split or break all that easily, so painting them has been a pleasure and a small joy of girliness in my otherwise mostly girliless existence. What I’ve always done is put nail varnish on late at night - after I’ve eaten and taken my full complement of codeine, meaning I have a couple of hours before needing the toilet again - and letting them dry as I watch telly/read/eat chocolate that doesn’t need unwrapping. Oddly, I’d hardly painted them much in the last couple of years, since having the bag. But I started again recently. Only to find another piece of my teeny tiny girly armoury is under threat.
I changed my bag a few weeks ago, a day or so after using a nail polish make I’d not used before. It wasn’t a cheap one either – well, it was in that I got it free with a magazine. It was the only reason I bought the magazine. But it was an expensive make; too expensive for me to buy, if I’m honest. It was a great colour; a kind of petrol bluey green. I loved it. I loved how my nails looked when I had it on –like a smaller, chubbier version of the hands of a well-groomed woman. A stylishly dressed woman. The kind of woman I’m not. It amused me that the hands of such a woman were about to get busy ripping off my bag of poo and replacing it with a clean, fresh, empty bag that would then fill with more poo.
I did the first bit – pulled off the old bag, set about cleaning my stoma and the surrounding area in preparation for the new bag, and noticed a couple of flecks of petrol bluey green on my stoma. It’s odd when you need to wipe things off your stoma – it has no nerve endings, so you can’t feel anything. You could really damage it and not know, if you weren’t careful. If you were an idiot. I picked off the bits, realising that as I did it, more little chips were appearing everywhere – in the sink, on the wipes, mixed in with the powder when I applied it; the powder that protects my skin and stops it getting red and raw and sore. I wasn’t sure tiny dots of nail varnish would contribute to that job. Manically, I wiped them from everywhere they appeared, or tried to. In the end I gave up, reasoning that if my stoma was going to be surrounded by poo, flakes of nail varnish weren’t really going to do that much harm, but it wasn’t nice. It was icky. Though it made me laugh when I saw them floating around in my bag later, giving my poo a whole new look. A kind of girly look, if you will.
I put nail varnish on again a few days ago – not the crappy, chippety, expensive free one, this time; an old, dependable, purpley one. But even that wasn’t to be. As soon as I’d applied it and settled down, I felt an itch under my bag. An itch can mean a leak is imminent. Obviously, a leak means a lot of mess - nasty, pooey, wholly unpleasant mess - if not caught in time. The itch can be seen as a warning and is ignored at your peril. In this case, I wasn’t going to get caught out, but I reckoned I had a few minutes. Enough time, certainly, to take off my perfectly applied, reliable, long-lasting, lovely, still-wet nail varnish so that I wouldn’t hamper the necessary bag change with smears of purple and horribly smudged, possibly poo-stained (who knows what happens when poo mixes with wet nail varnish? Not an experiment I’m about to embark on. If you want to do it, be my guest; let me know the outcome) nails. With a heavy heart, I removed the lot, then hurried to the bathroom to check just how urgent my bag change would be. Not urgent at all, as it turned out. Whilst an itch under the bag can often mean a leak is just moments away, it can also mean nothing. Absolutely nada. Sometimes an itch is just an itch.
So, how girly am I? Let me count the ways – lipstick, the occasional bit of eye make-uppy stuff, nail varnish if I ever dare again, and I think that’s it…
Oh wait, I’m forgetting something. Girly women love bags. They collect them, crave new ones, store them carefully. Well, I’ve got that one covered. I get a box of 30 every couple of weeks - new, not second hand. And let’s not even consider what vintage would mean… They’re not Gucci or Mulberry, but then I’m not that kind of person. If I could afford a bag that cost a couple of grand, I’d be more likely to buy a double oven and an American style fridge. Those are the kind of purchases I can get excited over.
I should point out that there are lots of women out there with ileostomies and colostomies, who look girlier than a Disney princess. They look gorgeous and pretty and perfect; I have no idea how they do it, and they have my unending respect. But I’m happy for it to remain a mystery to me; I’ve long since come to terms with not being girly. My bag’s just given me another excuse.
Thursday, 13 December 2012
I am now on day 3 of not having a flare-up any more, and it’s really rather fantastic. I’m tired, of course – not because of the evil Crohn’s malaise, but because I spent the last 2 days doing ‘normal’ things. I went to the supermarket and was mildly irritated by Christmas songs, I filled a prescription myself – well, the pharmacist did that obviously, but I took it to the chemist, which I hadn’t done in a while – met an old pal on my way there, stopped and chatted with her, for all the world like an ordinary person who’d never been sicker than having a cold. The next day was my 21st anniversary – we might not have lasted that long, but when you’re sick and you find someone who’ll put up with you, and even look after you during all the bad times, I figure you should stop looking. Plus, my husband is someone I still find funny, whose company I still enjoy, and is the owner of the face I look at every morning in wonder that I don’t hate him after all these years. Something to celebrate, I’m sure you’ll agree. I did also have a friend visiting from a foreign land and that lunchtime was the only time I could see her, so I went out for lunch with her and another friend, and then came home, where husband and I caught up on episodes of The Killing, which seems to me a pretty damned great way to celebrate an anniversary, and then went out for tapas. It’s no wonder I’m a bit knackered after all that. The good thing is I’m not in pain. Well, not in proper pain. To be honest, there’s always an underlying, cope-withable level of pain knocking around my abdominal area, but that’s just how it is. The real pain, the pain of the flare-up, the pain that feels like hot molten lava is being poured into your gut through a gaping hole that you can’t quite find, but can feel is most definitely there – that pain is absent. Gone. I am well. My version of well. And it’s great.
I do have to accept, however, that there may be a next time, and for that I need to be prepared. I need to be ready to hit that pain head on if and when it returns. And if it weren’t for the tyranny of the pain clinic, and the over-management of the NHS, that wouldn’t be a problem. It never used to be a problem.
When I was having surgeries in the ‘80s, pain relief was a simple thing, managed and dealt with on the ward, by the doctors and surgeons who were in charge of your care. In my case, I would get a Pethidine shot every four hours. This was in the days before the pump had been invented, when there was no PCA (patient controlled analgesia), so I did end up with a rather bruised backside, but it was worth it for the pain relief. And if that pain relief wasn’t working, a nurse would speak to a doctor and you would be written up for a higher dose. Simple. Towards the end of the ‘80s, the pump came along and the trend at that time was to fill it with a drug called Omnopon, which was a combination of Morphine and Codeine and some other stuff that I don’t recall, but it worked.
I then had a somewhat miraculous gap of 20 years between surgeries. The Crohn’s didn’t go away, of course – no, it and its gang of complications tried all kinds of ways of fighting with me for control of my body, but none of these necessitated surgery. I did go into hospital a few times, but I always escaped uncut. Eventually, the disease got angrier, I got less good at fighting it and by the time I was crawling to the loo 30 times a day, hoping desperately I’d make it in time, I had no choice but to make the whole baglady decision. Which put me back in hospital, back in surgery, and back into the clutches of controlled pain relief.
For the four years preceding that first operation – the ileostomy – I’d been in such bad pain that I’d been taking oral Pethidine, as prescribed by my GP, with the full knowledge of the hospital whose care I was under. I took 100mg three times a day, which is apparently a lot, but then I was in a lot of pain. Given my previous experience, I expected to be given the same pain relief after my surgery. But I had reckoned without the Pain Team. In hospital, the Pain Team are quite good. I was impressed with them. They gave me Morphine by PCA at first, and a pain doctor would come and check on how it was working at least once a day. If I said it wasn’t working too well, they upped the dosage, not demanding any proof, or having any long discussion. Just upped it. After a couple of days the Morphine made me feel so sick that I just stopped clicking the button that delivered it. I hate being in pain, but I hate feeling sick more. So they took me off the Morphine and gave me various other pills and potions that I didn’t pay much attention to, hence I can’t name them here. And the routine remained the same – if I said it wasn’t working, they happily gave me more. I liked the Pain Team. It seemed like a good thing that had happened since my previous surgeries. When I went in for the second operation a year later, the whole routine was the same - more than adequate post-op pain relief, kind Pain Team doctors, and then I went home, got over the surgery and everything was great. Until May of this year, when I had my first flare up.
I’ve spoken of this before, so I won’t bore you with details, but suffice to say it was painful. Person with metal spikes sticking out of him, running around the little gut I have left shooting poison-laden darts into every millimetre of intestine and then jumping up and down on those bits of intestine wearing burning shoes of diamond sharp blades kind of painful. I needed serious analgesia. Only my GP had the PCT looking over her shoulder and was quite rightly reluctant to prescribe Pethidine for me - a patient already on daily high doses of codeine - without a directive from the hospital. So she made an appointment for me with the Pain Clinic. This was in May. The pain stopped in early June, having been managed with Pethidine prescribed by my GI Consultant. The Pain Clinic appointment came through for September.
I thought it was best to go to the Pain Clinic anyway, so my GP could get a letter from them saying what medication to give me if I had another flare up. The woman I saw, a nurse practitioner, was very impressive. I told her about my problems with Morphine, she told me she was concerned about the side effects of Pethidine, which we discussed; I’d never had any of them. She told me I should try a different opiate and she would work out the dose as compared with my Pethidine dose and send my GP a letter to that effect. She also told me about Gabapentin. Gabapentin is a neuropathic drug that is generally given to epilepsy patients but that has been found to work well in long-term pain. I pointed out that flare-ups were finite and therefore so was the associated pain, and she said that she would advise an opiate for the first 3 weeks, moving on to Gabapentin afterwards. Gabapentin takes 3 weeks to kick in, and you have to take it constantly. Forever. It couldn’t be less appropriate for a flare-up, but it was clearly the drug du jour in the Pain Clinic and I left without really having sorted that element of things out. But I didn’t mind; my GP would get the letter, and I would get the right pain relief.
Six weeks later, the evil pain monster was back. Another flare-up. I called my GP, asking her to give me whatever opiate the Pain Clinic had advised in their letter. Only there was no letter. It had never been sent. My GP and two of her receptionists spent four days trying to get in touch with the nurse practitioner I had seen, finally getting a letter faxed from her, which said I should be having Morphine. 5mg. Completely the wrong dose. And Morphine. Which makes me feel sick. Which I’d told the nurse practitioner I couldn’t and wouldn’t and really didn’t want to take. But by then, I was exhausted; I didn’t want to feel my GP and her staff were spending their precious time chasing up a woman who clearly had paid me no attention. And I did have some Pethidine left from the last flare-up, so I used some of that, the occasional dose of Morphine and mostly tried not to howl in pain. It was the least fun flare-up I’ve ever had.
Last week, I went to see my GI Consultant; he’s lovely and I can talk to him honestly and openly. He was not impressed with the Pain Clinic and after a long discussion, he and I came to the conclusion that trying other opiates, not knowing how I’d react to them, seemed rather silly, considering we knew that Pethidine works for me, I have no side-effects from it, and I can come off it easily. He asked what my GP would need to prescribe it for me if I was to have another flare-up. I said she needed a letter from the hospital and he pointed out that he could write one of those. That he would, in fact, write it that very day, although given all the cuts in staff, it might be a couple of weeks before a secretary found the time to type it up. Which was fine. I was happy. Next time I have a flare-up, with no thanks to the Pain Clinic, I will be prescribed Pethidine again. Hooray.
On Monday of this week, I saw my GP and told her the news. It’s all going to be fine; my Consultant, who has been looking after me and my disease for more than 11 years, will write her a letter saying she should prescribe me Pethidine when I’m in pain. She said that was all well and good, and she hoped it would be enough, but actually what the PCT would require was a letter to that effect from – you guessed it – the Pain Clinic. Who don’t know me, who didn’t listen to me, and who think I should be permanently taking a neuropathic drug if my flare-up lasts longer than three weeks. The PCT will take more notice of a letter from them than they will from my Consultant who has known me well for more than 11 years.
I love the NHS, but I do wish they’d support their front line staff – the doctors and the nurses – properly, instead of spending fortunes on managers who know nothing about medicine. Managers who cut secretaries and receptionists, leaving nurses to answer phones and find patients’ notes. Who make Pain Clinics the arbiter of what drugs patients of whom they have little or no knowledge should be taking.
I will get it sorted. I will find a way to make sure I get the right pain relief if and when I should need it again. But I really wish I didn’t have to keep chasing this nonsense up when I’m feeling well. I’d be far happier going to the supermarket and sneering at their festive tunes.
Thursday, 29 November 2012
In 1988, my surgeon told me I had two years left to live. That sounds melodramatic doesn’t it? If not slightly ridiculous. I thought that at the time. I was pretty sure for the whole of those two years that I didn’t believe him for a second. Even when my mother told me he’d phoned her (which probably broke all kinds of ethical codes) and told her the same thing. Then, when those two years were up, and all kinds of tests - pinching myself, taking my own pulse, realising that my legs desperately needed waxing - proved that I was most definitely still alive, I fell into a big, black, horrible abyss. Not a real one. A metaphorical one. A Churchillian black dog (as opposed to the white one that sells you insurance) kind of thing. I was depressed. Properly depressed. Diagnosed depressed, and provided with both a Community Psychiatric Nurse who visited me at home every two days, and a prescription for anti-depressants. The nurse and I concluded that I was reacting to surviving the death sentence I was convinced I’d never believed. A bit like when you’re in a car crash and you handle it brilliantly at the scene, then go home and shake for three hours. That kind of thing. But bigger. The nurse was great; we got on brilliantly and she probably kept visiting me for longer than she needed to just because we enjoyed each other’s company. We even stayed in touch for a few years afterwards, but eventually she went back home to Sweden, where she was from, and she was out of my life. The anti-depressants were a different story.
I only tell you that tale to give context to how I started on anti-depressants; I’ve been taking them on and off – more on than off – ever since. I stopped them for a year or so when I got pregnant, then there was research that showed they were good at keeping Crohn’s in remission, so I went back on them. Then a few bad things happened – deaths of loved ones, jobs lost, that kind of fun stuff – and I stayed on them. The ones I take are currently called Dosulepin (they were called Dothiepin ‘til a few years ago); they’re part of the tricyclic family, which is the more old-fashioned, these days less-favoured group of anti-depressants. When SSRIs first became trendy in the late 90s, so did apocryphal stories of people who’d never been violent murdering their entire families after taking Prozac for a week, so my GP and I decided I shouldn’t change over to them. It probably wasn’t for that reason exactly, more that I’m an uppy kind of person and SSRIs are uppy too. Tricyclics help you sleep, which is more the kind of thing that works for me. Every night I take Dosulepin, followed by enough codeine to put Mike Tyson to sleep, and I still get regular bouts of insomnia.
I have never been depressed like that first time again, thank goodness, but I did come to the realisation that taking anti-depressants was a pretty sensible option for someone with chronic disease – not just Crohn’s, but any chronic disease. In most instances, when people feel low (that’s low – miserable, unhappy, desolate even - not clinically depressed), there’s a way out; a new route you can at least try to move your life on to, but with chronic disease there’s no escape. Whatever you do to try to improve things, you’re still going to have a chronic disease. At that time, I didn’t really know many other ill people, but nowadays I do, and I’m so glad that I do; knowing other people in a similar position, people who truly ‘get’ how you feel, is a wonderful thing. Not knowing any meant I had to come to that obvious epiphany all on my own. I know now that lots of people with chronic disease or disability take anti-depressants; we’re the anti-depressant gang.
As someone with an ‘invisible illness’, I have to take them so I don’t punch people in the face when they tell me how well I look. We all have our own pat answers to that statement; mine’s usually ‘Oh thanks, I’m really not though.’ The thing is, when you say, ‘It’s great to see you looking so well’, to an ill person, we (okay, I) sometimes hear ‘I don’t know what you’re complaining about, you’re clearly fine, you malingering fuckweasel.’ It depends whether you’re the first or the fourteenth person to say it that day. I know that’s really not what people are thinking, of course I do. Unless they work for Atos, that is.
Sometimes though, I really wish I didn’t look hale and hearty when I feel so ridiculously fatigued that buttering a piece of toast is asking a bit much. Looking fit and healthy when your bowel is suppurating and cramping and your bag is so full it’s threatening to burst and you’re going to have to buy a coffee in order to use a loo, can be a bit annoying. But most of the time I’m fine with it. If I look well, though, I’d quite like to be well. Matching insides and outsides would be good once in a while. If I wasn’t on the anti-depressants, those things could really get to me. I don’t suppose it’s completely down to them that they don’t, but they help.
I’ve been having a flare-up for a while. I was pretty sure it was gone a couple of weeks ago, and I got up and went out a bit. Met a couple of friends for coffees and lunches; ventured to Ikea with husband and son and rejoiced in the fact that we didn’t fight. Didn’t have so much as a cross word. And when we got home, I realised my gut was hurting. That it had been hurting all day and I’d been ignoring it; hoping it was just a twinge and would go away. But it didn’t, so it was back to bed for me. I did get up to go and see the GP who told me I had probably been over-confident; that I should have rested for longer; that this time, I was to go to bed and not get up until 48 hours after I feel better.
I’m still mostly in bed. It’s not as bad as it was, the flare-up, but it is pissing me off. I used to be brilliant at resting; at staying in bed. I did it for the best part of four years before I finally accepted that I needed an ileostomy and my baglady life began. Now I find it really hard. Now that I’ve had months at a time of relatively good health, I’ve become rubbish at staying in bed. I’ve become very good at thinking I’m about to be better; I’m brilliant at naively making arrangements, sure I’ll be able to keep them because I’m almost better, really I am.
Some days I find myself quite angry. I feel impotent, not in control of my own life, envious of other people’s good health – not my husband’s, or my son’s, but other people’s. Possibly yours. I see mothers outside my window shouting at their kids and I want to run out there and yell in their faces. Just sometimes. Because really I know that nobody appreciates good health until they lose it. And even then, if they’re lucky enough to get better, they only appreciate it for a while. I know because I’ve done it myself. When I first had life-saving surgery, and had yet to discover how much my Crohn’s would affect my life, I swore I’d cherish every second, enjoy every moment, fill every minute of every day with marvellousness. I must have tried to do that for about three weeks before losing that feeling; that need; that appreciation of just being alive. But lordy, there are days when I get so pissed off seeing perfectly healthy people wandering along looking grumpy. Of course, they could have an invisible illness themselves, but that doesn’t play into my scenario, so I always assume they don’t. And yes, I do know the word ‘hypocrisy’. I’m allowed a little leeway – I’ve got Crohn’s. *said in the plaintive whine of a particularly irritating 5 year old*
To be fair, my life is mostly good. Our lovely new bathroom is finally finished, we’ve got a sick-makingly cute new kitten who appears to be perfectly healthy. (You can read why that’s such a huge factor here), and my flare-up is surely coming to an end. Certainly it’s not as painful as it was at the beginning. I’m not taking any major pain killers, and not just because I only have morphine which makes me throw up if I take more than one dose in a 36 hour period. The fact is, it doesn’t hurt as much as it did.
I do have to keep cancelling things, but that’s my own fault. I shouldn’t arrange anything until I know for sure I’m well. It can get a bit tiring, or at least repetitive, having to explain to people that yes, I did have two massive surgeries and my intestines replumbed to help with the Crohn’s, but that’s all it was ever going to do – help. It wasn’t going to make it go away. It wasn’t going to cure me. The doctors and surgeons told me that, and I’m pretty sure I told my friends and family the same thing. But here’s the secret; the truth – I think I really thought it would. In the same way as I never believed I was going to die, I kind of did believe that although there were no promises being made, having a bag, and then going the whole hog and having my rectum removed and my Barbie butt created (bum sewn up – see posts passim), probably would make me better. Not cure me exactly, but make things so much better that I’d be just a person with a bag. Not a person with serious Crohn’s and a bag. I think I thought I’d have mild Crohn’s. It does happen; it’s happened to people I’ve met, and I was pretty sure it would happen to me. If I’m really honest, I still think it could – there’s a part of me that believes, once this flare-up has truly gone (my second since the last operation), I’ll be quite well. I always think things are going to be ok; I assume they’ll turn out perfectly fine, and I’m always taken aback when they don’t. Every time. It’s probably not a particularly intelligent way of existing, but it works for me. I’m mostly a glass half full kind of person; I like being that way. And when it does turn out the glass isn’t half full, but just has a nasty quarter centimetre of sediment on the bottom and is badly in need of being washed, well then I cope. I always cope. Partly that just seems to be who I am. And partly, I expect, it’s thanks to those little red pills I take every night.
Thursday, 8 November 2012
In a week where the world breathes a sigh of relief at the Americans making a better voting decision than we in the UK did last time round; where the cuts in our country are so bad that a disabled man went on a hunger strike outside his local DWP office; a week when a woman with Crohn’s disease, seemingly unfamiliar with the concept of remission, claims to have cured herself by eating tree bark (she has a secret recipe which she now wants to sell for millions to a pharmaceutical company)… In such a week, I feel I should be writing about something big. Something important. But there are people with more knowledge than I doing that. About all these things. So I’m going back to what I know best: my own story. Though I am quite cross about the tree cure thing…
This week, we are having our bathroom done. I say this week, we were also having it done last week and the week before. Workmen actually ripped out our entire bathroom, with a view to putting in a new one, three weeks ago. It was going to take a week. For the first few days, I was going to stay here and busk it – we have a tiny, unheated downstairs toilet – and then I was going to spend a week at my mother’s, coming home to a bright, shiny, perfectly functioning new bathroom. I should add that, all this time, I was having a horrible, painful, evil flare-up of my Crohn’s. I was on morphine which made me sick, then started eking out the few pethidine I had left from my last surgery, and which my GP has been told not to give me any more of. It’s a mess that I will only be in a position to sort out when the flare-up is long gone and I am well and strong enough for the fight. One of the ironies of chronic disease in today’s NHS. Maybe I should just go out and chew on a few branches.
A new bathroom is a lovely thing for anyone. For me, it was kind of a necessity. Our old bathroom worked – well, mostly. The toilet was old and tired and the flush took about 5 goes before anything significant would disappear into the waste pipe, and the tiles had swans on them. You know the kind of thing, white tile, white tile, white tile, swan. Then every so often, a series of tiles depicting a couple of swans on a lake. Horrible, hideous, chocolate boxy stuff, but not exactly dangerous. Just aesthetically unpleasing. Oh, and all the metal bits were faux gold. Faux gold taps on the sink and bath, a faux gold shower and attachments, faux gold hooks on the back of the door where we hung our towels. Nasty and tacky but again, not exactly functionally problematic. It wasn’t the prettiest of bathrooms – it was actually the ugliest one we’ve ever lived with – but it had been kitted out professionally enough and we’d lived with it for 11 years so we barely noticed it any more. Every now and again, the horror of the swans would upset one of us and we’d shout a bit, but then it would pass and we’d laugh and remember how much worse things could be. At least everything worked, if you don’t count the multiple toilet flushing thing.
And then I got my bag. And every two days I have to change my bag. It’s not horrible or upsetting or nasty or – usually – even particularly pooey, but it is a bit of a faff. And in that bathroom it was a lot of a faff. I hadn’t really thought about it much; it was just the way it was, and we weren’t in a position to do anything about it, then one day my mother was over and generally criticising. It’s ok, she’s my mother; it’s allowed. Sometimes criticism can lead to positive change, and this was one of those times. She was telling me how dusty it is in our bathroom, and asking how we cope with it (we live on a main road; it can’t be helped) and then she said, looking around the golden room of swans, ‘How do you change your bag in here?’ And out it came; a monologue of moaning about how difficult it was. How I had to perch the waste bags on the closed toilet seat, along with the dry wipes, how I put the fresh bags (always have more than one ready in case of error) on the side of the bath or, when it was on, the radiator (heating them up makes them stick more easily), how the sprays, powder and seals had to be laid out on the toilet cistern, and how, if my stoma decided to gush in the midst of a change, I had to sweep everything off the toilet seat sharpish so I could angle my stoma over the bowl and let it do its stuff. It was less than ideal. In fact, saying out loud how less than ideal it was made me feel a bit upset. A touch helpless. A few weeks after that, we found ourselves in a position to get a new bathroom.
Two days before they ripped the old bathroom out, I woke at 6am in a panic. I couldn’t stay in the house without a bathroom; what if I had a leak in the middle of the night? A bad one? It rarely happens these days, but it was bound to happen when I had no means of sorting it out. No shower. No heat. Just the tiny, freezing downstairs loo with half a sink in it. I had to go to my mother’s sooner. I had to go the day before the bathroom was no more. I would have to spend 10 days at my mother’s instead of a week.
Husband’s brother is a plumber who lives near Wales. He came to stay for a week, to do the plumbing. For free. Because he’s a good and lovely brother and knows we’re not exactly rolling in money. Unfortunately, the contractor who was doing everything else took to not turning up, and at the end of the week, brother in law had to go home with the bathroom barely started. He felt terrible. We felt angry. Each morning, waking in the warmth of my mother’s house, I’d tentatively ring home, nervous of what the answer to my ‘has anyone turned up?’ question would be. So many mornings, the answer was ‘no’. It seems, ‘I left my phone at a job/my girlfriend’s/the pub’ is the new one size fits all excuse. For 3 days, the contractor was ill. Then he went on holiday for a week. Then, when he got back last weekend, he told us his aunt came off her bike, which necessitated him not working for a couple of days. Perhaps he’s a part-time doctor. Who knows?
After two weeks, I came home from my mother’s. We’d got on fantastically well, but we’re a mother and an adult daughter; I didn’t want to push it. And, most importantly, the sink was plumbed in by then. So was the toilet, but it’s the sink that was everything to me. I chose the sink carefully; I didn’t care too much about everything else in the bathroom, but the sink … oh, the sink is the sink of my dreams. It’s wide. Really wide. The sink itself is normal sink size, but on either side there is space. Masses of space. It takes up almost an entire wall – it’s not a huge bathroom – but I had to have it. Because of all that space.
The night I got home was a bag change night. There was no radiator yet, and the hole where the extractor fan will go was open, leading directly to the cold outdoors. But the sink was in. My dream sink. And I was desperate to give it a try. I gathered all the necessary accoutrements, including the radio (I hate to do a bag change in silence) and entered what will, one day, maybe soon, be a fine bathroom. It was just me, a loo, an unplumbed bath, and my beautiful, working, huge sink.
On the left of the sink, I put the sprays, the seals and the powder, leaving space to stand over as I powdered and sprayed the stoma itself. The bags I put on the right, along with dry wipes and the waste bag, open and ready for discarded bags and used wipes, and I was done. Everything I needed was on either side of my beautiful new sink, just as I’d fantasised. The toilet was unencumbered, the bath was full of workmen tools, but that was it. I didn’t have to perch anything on the edge of anything else, because I had my dream sink. I apologise if this doesn’t mean anything to you; if I’m wanging on and on about this sink and you’re thinking that perhaps spending 2 weeks with my mother hasn’t left me unscathed at all, but mentally scarred in the weirdest of ways. If, however, you have ever had a bag, or have one now, or just know enough about it for whatever reason, then you’ll get it. You might even be a bit jealous; craving a dream sink of your own. I can tell you where to get one if you want, but you’re not having mine. I’m keeping mine forever.
As I write, the bathroom is still not finished. Every morning, husband gets out of bed stupidly early for a man who works at night, to be ready for the workmen to arrive at 8.30 as they always promise. And rarely do. We’re getting closer. The tiling is done, the bath is plumbed in, but not yet sealed, the shower is in over it, but not the screen door; plumbers – the plumber we have to pay for because our free, husband’s brother one had to leave when nothing else had happened – plumb, you see. They don’t put in doors, or seal joins. This one did put the radiator in though, so now the bathroom is unfinished but warm. And the toilet still works.
It’s annoying, and it’s irritating, and I have only had to live with it for a week, whereas husband and son have been coping with the aggravation and living in a house full of dusty tools and alien lumps of metal for 3 weeks now.
But it will be done, and it will be lovely, and in the meantime, I already have my sink. I have changed my bag at that sink four times now, each time more glorious than the last. And that flare-up? I think – whisper it – that it is almost gone. A bit of residual pain, but I have energy and I’ve been out during the day for hours at a time without having to pay for it in agony and tears. You know how I did that? It’s not a secret I need to sell to Big Pharma; it’s quite simple and often works on a flare-up if it’s not too serious – I rested. I was never tempted for even a second to try sucking on a tree.