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.
You write with a quality I can only dream of achieving. fab as always. Michael x
ReplyDelete