Tuesday, September 26, 2006

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?


Anonymous said...

HI Emily , sending you lots and lots of inflatey and stickyuppy thoughts :) Take care hun , love always alan xxxxx

Anonymous said...

Lots and lots of inflatey lung thoughts are going your way. Good luck with everything today. Glad to see you are still as mad as ever pink princess! Lots and lots of love,

P.s. Did you think of anyone you know who is in the Berkshire area for the newspaper article?

Anonymous said...

You haven't lost your sense of humour .Good to hear the lung is up and sending the angel in charge of lungs and suchlike to keep it up and sticky .take care ..love Anne

Sarah Milne said...

Sending loads of pink, fluffy, sparkly inflatey and sticky up thoughts. Great to her you sounding so brave and positive. It really doesn't make things seem more imminent to be ready. We have a file with all our plans and ideas should something happen to William and it is very comforting to know that we have such lovely things in mind. It makes a horrid, terrifying and sad prospect seem much under our control. I will be thinking of you as you face these discussions. They will be hard but I hope you get the same sense of calm once you have made your plans. You are right - we all need to do this as we never know what is around the corner!

Just had a great thought about something that could stick your lung up - how about candifloss - I took Ellie to the fair on Saturday and it is has cetainly stuck everything else together, and it's pink and fluffy!!!

Loads of love and hugs
Sarah xxx

Jac said...

I am relieved to see that you have corrected my spelling mistakes in that conversation extract :)

Hope the lung is staying up and standing to attention! Also hope the agency nurse isn't on duty today..I suggest if she wants you to take all the tablets together again, that you pelt them one by one at her head. Save the biggest ones until last..for a dramatic conclusion.

Take care and stay positive!
Jac xxx

Anonymous said...


Just gotta say that convo between you and Jac made me laugh out loud! So funny...also in real life you never get the gossip of who's bed hopping with who like you do in ER (while they're operating over somebody!)...

Anyway, keep cheery, Sendin you sunshine your way, xXx

Anonymous said...

Hi poppet, talk about a great attitude - your courage leaves me speechless. Horrible things to have to get out of the way but I always think that planning such nasty details usually means we don't need them in the end; it's when we don't plan that something bad happens . So think of this as something positive while you wait for your good news. Probably even more horrible (scary really) was your session with the CF nurse, sounds quite intimadating but I am sure you can handle. Glad to hear things are up and staying up; you are a winner and you will come up trumps, believe me. thinking of you always, J.

Anonymous said...

Best of luck with all the talks. Hope it'll make you feel empowered. xx

Lizzie said...

hehe twenty of saline...cos what on earth would twenty mls of saline EVER do?! hehe. I laughed so much at that conversation.
Stay Smiley :-)
Lizzie xxx

Anonymous said...

Sending you BIG (((((hugz)))))& positive vibes .........
sure VERY emotional time for you but can appreciate you want to be in control of any decisions etc.......

In our thoughts and prayers
Hope you got our card?

Elaine & Rach :D & family xxx

ps made me laff bout Nurse from hell etc we found a couple of them yesterday whilst Rach was in hosp!!!!;O

Anonymous said...

good morning sweetie, just a quick word to say I am thinking of you and hope those talks weren't too depressing yesterday. The fact is that any one of us can pop off at any time, no-one on earth knows the when or the where so don't dwell on it (as I know you don't anyway; you are one of life's great "positives". Hopefully today will be a more cheerful day. Lots of hugs and pink thoughts. J.

Anonymous said...

Lots of love and inflatey thoughts sent your way........

love MoO xx

Unknown said...

Hi Emily,

Keep up the good work you are doing great. Show those agency nurses what you are made of only you know best.

Take Care.

Anonymous said...

lmao @ ur ER convo there!! Good luck with the talks em, and sending lots of pink inflatey stickyuppy candy flossy thoughts ur way!!

Emmie said...

I've solved it! Chewing gum. That's what you need in this situation. If it can stay welded underneath a school table for 25 years, it would sure as hell do the job required I reckon.

Oh well, my intelligent train of thought has been interuppted by a certain small, white and very WET dog emptying the wastepaper bin. Starngely enough she wasn't so interested in the chocolate cupcake wrapper or the crisp packet...no it was the empty DNase vial she had her sights set on. Please tell that man of yours that this does NOT make her a GOOOOD dog ;o)

Loads of love treacle

Anonymous said...

Emily, of course this treatment will work. Don't forget to keep repeating to yourself "the treatment is a complete success. I absolutely refuse to be ill any longer". Say this gently and firmly, as often as you can; it will make a huge difference.

klics04 said...

Emily,first sending you loads of hugs, could blue tac be your answer, saying loads of sticky up prayers for you. Inga has the agency nurses from hell! then she becomes the patient from hell!!!
thinking of you, lesnkev Cyprus