Sunday, June 25, 2006

Transpennine Express

It's Sunday afternoon, I'm sitting on a train out of Manchester Piccadily
towards Darlington, and wishing I'd thought of buying a newspaper and a
bottle of water on the way to the station. I'm trying to distract the tickle
in my throat and the craving for a Sunday paper fix by writing a blog post
for the first time in ages.

In fact, the reason I decided to do this was a wish to write down a url
somewhere so that I might remember to look it up sometime. This is a
business card which says "Salsa" on one side, and on the
other. Is it a band, a DJ, a club, a directory, an online magazine...? I
have no idea. If I write it here, perhaps the vanity that makes you go to
the web just to see one's own prose immortalized (ish) in cyberspace will
prompt me to follow the link and see who it is. Sitting here on the train, I
started going through my wallet trying to get rid of the junk that's making
it bulge too much to fit in my pocket - scraps of paper with a name and an
email address, but nothing to give a clue as to where or when I met that
person, and why taking a note of how to contact them seemed like a good

What's happened since the last time I wrote anything here? Well assuming
there's anyone who's interested (is there? Do feed my vanity and leave me a
comment ;) the last few months have been pretty hectic. I spent a couple
months doing Haemodialysis at Guys hospital. This means turning up there at
the appointed time on either Monday, Wednesday and Friday, or Tuesday,
Thursday and Saturday to be hooked up via a 'neck line' (a plastic Y-shaped
tube sticking out just below my collar bone, permanently plumbed into my
jugular vein) to a machine, which spends four hours cleaning your blood. In
that time, you see 91 litres of blood flow out of one tube, drip through
various filters and back in the other. In some ways it's a relaxing 4 hours,
when you can either just pretend it's not happening and continue working
normally, or just relax, snooze and wake up feeling a bit light-headed but
refreshed. I managed to run up my biggest ever phone bills in there as using
the Orange data connection was the only way I could get online. My only
complaint about the NHS is its complete unwillingness, or ignorance about
how to use basic technology to make its inhabitants' lives (both staff and
patients) a tiny bit more bearable at pretty low cost. Someone spends a
fortune putting big plastic screens (TV, radio, phone) next to every bed,
that cost so much to use that I can't imagine many people bothering. But the
simple thing of adding a WiFi transmitter to the local network is too much
to ask. Anyway, it seems to be changing. I complained about this, and in
response, there's a new dialysis unit in New Cross (South East London) with
Wifi installed. Hope someone is using it.

As soon as I could, I changed from haemodialysis to peritoneal dialysis.
This involved having another tube plumbed into my lower abdomen. After six
weeks or so, it was ready to use, and I now do a mix of APD and CAPD. The
first is 'automated' which involves being attached by a tube to a machine
beside the bed every night. This automates the insertion and extraction of
12 litres of fluid while I sleep, in 2 litre doses, leaving each one in for
an hour or so. It sounds pretty invasive described like that, but in fact
it's extremely ignorable. That leaves one more 2 litre fluid exchange to do
during the day. This is where the CAPD (or Continuous Ambulatory Peritoneal
Dialysis) comes in. It takes 20-30 minutes, and so far I've managed to do it
under a tree in Battersea park, on a bus, on a train, waiting for a train
and in various restaurants, I hope without putting off my fellow diners in
the process.

So that's how life is now. It's a bit of a hassle, but better than the
prison-like sentence of having to go to hospital for three days a week. It
means being a bit more organised than is perhaps my natural inclination, but
maybe that's no bad thing. Lugging up to 14 litres of fluid, plus packaging
per day is a tad strenuous, but as anyone who knows me of late will know,
that's not that different from normal! Crucially, it means I can travel -
I'm writing this in the middle of my first trip away with the APD machine,
which comes in its own big black wheelie flight case.


At 12:44 pm, Blogger Julian said...

I'm glad you've got the flight case, and I'm glad you didn't go to the States with it last week. My dep for the Roaring Forties meander seems to have broken his collarbone before playing any gigs at all. I still haven't got the full story. Fair play to you: the king of not making a fuss.


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