I've completely dropped the diary. Mostly due to a lack of sleep and on again, off again hospital admissions and life just getting completely crazy.
And the funniest bit of that paragraph above is that I wrote it over a month ago!
The thing with life is that once you're allowed off the benches you get in there and play, and there's no time to stop and write about it!
So I'll have to catch up on the last loooong diary entry for the chemo some time soon. It includes some juicy moments on other wards and some riveting hospital politics. It even has me getting angry with a nurse. (Yes, really. Me.)
And the question then is….where are we up to?
Well…kind of in limbo.
We're in hospital right now, with what should have been a straightforward viral temp but suddenly we had a positive blood culture and now it's complicated. It's not a biggie though - although I am kind of still up waiting for the nurse to attach the sats probe because I have a feeling that when she attaches it the sats will be low and she'll want to start oxygen….and we've had fluid overload today….and I think we're likely to have it again….which is a very likely cause of low sats….and we DO NOT LIKE OXYGEN PRONGS and will avoid them at all costs. So I'm waiting up for now. Just in case….
We have a thing called 'para influenza'. We call it 'para-flu'. It sounds like a cool flu in camouflage gear that gives you croup. (Except for us, no croup here.) It's not actually influenza. It's just pretending.
And where are we on the leukaemia thing….and the heart thing? ("The heart thing?", I hear you ask. Yes, the heart thing.) We're finished all our chemo, with inconclusive bone marrow results, which our big head honcho doctor thinks are absolutely fine 'because why wouldn't they be?', since they always are. Explanation in the big diary blog. The heart function has been getting funkier and funkier over the course of this year. We'll need to address that. Explanation in the big diary blog.
It's nearly October, which is Down syndrome awareness month. And we all know how I feel about awareness months……
A couple of things have become fairly clear over the last 9 months. I call these the Rules of Oncology.
If you assume things will go one way, they will almost certainly go the other.
If you plan for something it will almost certainly not happen, or if it does, not the way you planned it.
If you fail to arrive for a simple appointment fully packed with supplies to stay for a week, you'll be admitted indefinitely.
Jacinta is awesome and everyone loves her.
Night nurses are not to be trusted…. (OK, maybe that's not always 100% the case, but still…..)
And Jacinta is pulling herself up to stand lots, taking a few steps towards me within the safety of my grasp, eating everything under the sun, with a spoon or fork if I let her, feeding me food that she has NOT chewed (after I started refusing the chewed things), has a mouthful of teeth and a new head full of hair, is saying lots of things (with varying levels of clarity), blowing raspberries on MY tummy, and generally being very clever.