Yesterday continued weekend’s theme of being social butterfly thanks to certain fabulous family and friends who (nearly 10 weeks on) continue to traipse up to London to make me smile. I had visitors in and out all day, the final ones (mother and her lovely friend) carried out essential maintenance such as painting of toenails and aided me in donning pretty new PJs which are, newsflash: not pink but a gorgeous sunny yellow, albeit with essential pink flowers to prevent lackofpink hissy fits.
I had the agency nurse from hell this morning. I suspect other people with CF reading this already have a vague inkling the minute I mention the word “agency”. You see there is nothing wrong at all with being an agency nurse, but CF is an extremely specialized condition, therefore the care given in hospital is somewhat different to how you would imagine a patient to require. Normally the nurse is needed to control all timing, distribution and taking of medication, whereas in some cases the pwcf does all of these things (although again this varies; I am very restricted mobile wise so have much more help.) Being woken up to nurse bellowing in my ear and insisting the main lights are switched on so I can sit up and take all 22 morning tablets in one go (I prefer to space them out throughout breakfast, been doing this 20 odd years, got a bit of a regime now) did not go down very well. There may be some evidence towards the fact that my temper was a tad frayed already (fan blew my cup full of straws off my bedside table so I sat in cold rage and gave it deathwish evils for a considerable length of time) but clearly initial description is both calm and rational.
The next day or so will be slightly challenging as I am currently going through all the talks which are unthinkable, unpleasant, but necessary, such as end of life care, and tonight, the writing of wills. This isn’t a sudden thing they have sprung on me, we are going through these issues for my sake as I work far better when I am informed as much as possible; it is almost like if I can see my cards all laid out on the table in front of me then I can cope with whatever hand I have been dealt, but I am not very good at the “what-ifs” and end up wasting a lot of time and energy creating new ones (I am surprisingly over imaginative, this process can go on a while). Actually if I am honest so far it hasn’t been unpleasant at all. It is sad – at points very sad – and I suspect the end of life one with the doctors will be quite frightening, but with each tear or moment of sadness, or difficult thought that I finally vocalize, seems to come more of a calm, because I was thinking through them anyway, and do you know what vocalizing them doesn’t suddenly make them any more imminent, it can simply help you face them and tackle them however appropriate. And anyway as my mother pointed out (sometimes beneath her overexcited and childlike exterior she is really quite wise) everyone should have a will, it isn’t morbid it is common sense, so I might as well get it done and dusted.
A dear friend of mine with CF who somehow ends up on the receiving end of a lot of my deeper and most confuddled mumblings and I were talking about the issue of end of life care today. Due to our shared sense of slightly inappropriate humour, the (originally very helpful) conversation meandered slightly and ended up somewhat like this:
Jac: I want all the top doctors working on me in an ER style
Me: Yes - you should state that you want ER theme tune pumped in at all times
Jac: Brilliant idea! That would keep me going, and then I will miraculously recover and happy music shall play as I dance into the sunset…
Me: Ooh interspersed with doctors shouting “Damn it woman, we’re losing precious time!” etc at regular intervals. For effect.
Me: You know they don’t do that in real life?? It’s all very calm, I was highly disappointed.
Jac: Yes it’s all rather dull in fact. No one has ever straddled my trolley as I was wheeled into a lift being given CPR
*pause at this end for coughing fit induced by laughter*
Jac:It’s normally just a porter with BO saying 'so been in long?'
Me:And why is it that it is never a glamorous moment where two extremely sexy doctors who rush to your bedside holding your hand and gazing with concern into your eyes? Whilst everyone else runs around going “Give me twenty of saline!” or some such useless drug...
*continues in similar vein for some time afterwards*
I have a small inkling that the talk with the doctors here won’t quite be along the same lines.
Lung wise – after a good X-ray early afternoon gave us the green light, drain is now off suction again for 24 hours to see if it will remain upright on its own so think inflatey and stickyuppy thoughts please! Essentially today I have been very smiley – once these things are out in the open and out of the way I can crack on with getting out of here, living it up a bit (in my own unique way...) and hopefully getting this transplant. Plus when you glance down and you are wearing PJs which remind you of a sunny spring morning what else can you do?
Update to say there is no update!
1 week ago