Tuesday, 16 April 2013

Disintegration

Nobody said it was easy. It's such a shame for us to part. Nobody said it was easy. No one ever said it would be this hard. Oh, take me back to the start.
The Scientist - Coldplay

Day 40 : An anecdote, some prosaic stuff, and a goodly dose of separation anxiety.

Last night something I have been fearing finally happened. As I was on my way to bed, my line dressing simply fell apart (too many steamy showers, I suppose). In the absence of Marisa, who is highly trained in the elaborate rituals of line care, I was left with three unattractive choices. I could (1) just ignore it, and hope it doesn't get infected. But free of the dressing, the lines swing a bit looser, and the ends hang a bit lower (maybe I need a bra), and it all gets tangled up in my clothes. Or I could (2) summon my Dad - but that really does seem a cruel and unusual punishment to inflict on him. Or, reluctantly, I could (3) try to redress it myself, despite the fact that I haven't done this before, and it's hard to see what I'm doing, when it's located on my own chest. So it is that I find myself stood in front of the bathroom mirror, with my sterile kit all laid out, doing a DIY Hickman line dressing. I clean it with the squidgy thing. I keep the sterile stuff sterile. I manage to get the sterile gloves on without getting unsterile fingers all over the outside of them. I manage to put the little blue sterile pad in place, without dropping it on the unsterile floor. And I get a new dressing on, with the line looped up tidily behind it. I am very proud of the result. I think I earned a sticker.

A round up of the days other stories...
(Skip this if you're bored of hearing about my legs/ back/ sleep patterns/ bladder)
a) Today I attend an exercise group at the hospital. I will be fit! And when I am, it will be worth so much more, because I will know exactly how hard I have had to work to achieve it. My achy legs are getting much less so. I think this particular issue is disappearing.
b) My back is getting better too. Easier to stand up straight, and I'm less aware of fighting to be vertical while walking. That said, I just checked in the mirror, and there's a long way still to go.
c) Last night, for the first time in months, I slept without waking in the night. Big thanks to Ben and Gyles for helping me be so tired! And thank you too, boys, for all the fun and laughter we are having together this week. I've missed you both so much.
d) Because I didn't wake, I didn't go to the bathroom - a nasty habit I acquired during my transplant (when they kept pumping IV fluids into me) and which I am very keen to break. I want to go camping in the summer, and happy campers DO NOT have to pee during the night.

And finally (but importantly)...
The family reunion has been set back another 24 hours. Get well soon, Marisa. We really miss you. It's Lyndon's first birthday today. Happy birthday, my baby boy. You have carried my spirit through the last year. You are the reason.
I promised you, before I went in to hospital, that I would be home for your birthday. I am, but I wish you were here too! Fortunately, being only 1, you won't notice at all if your birthday celebrations are a few days late. And they'll be all the more special, for being so long looked forward to.

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