Tuesday, October 31, 2006

Whenever I appear to be disappearing into an “oh woe is me” temperament, people are lovely contacting me with various sweet messages of support, and came up trumps again this time, exemplifying everything I said in my post about faith. As always, thank you.

On Thursday I pootled up to the Brompton (which I can rename my summer house I think judging from the last 2 years) to start another course of Intravenous antibiotics, mainly as a pre-emptive strike as lungs have started to misbehave and do naughty things like bleed spontaneously for no reason at all in the middle of the night; clearly not conducive to relaxation. In some ways it was quite nice to go back up to the hospital as I got to catch up with some of the staff and I think it was nice for them to see that I was doing ok too. The day went smoothly and it was a wonderful and liberating feeling to just be an outpatient and to arrive and leave on the same day. It is a gloriously blue-skied crisp and sunny day today but I am trapped indoors, having run out of portable O2 a week ago and been left stranded by my suppliers (anyone would think I am demanding bottles of pink champagne not oxygen!) Trying to get hold of new oxygen cylinders creates all sorts of fun and games - the response when I pointed out the importance due to me being listed for transplant was highly amusing; “we suggest that should you be called you ring us straight away and we will try and get some to you as soon as possible” (clearly they don’t quite understand how transplants work). Still IVs cause you to tire out quite quick so it’s good timing to be stuck in and made to rest really, plus it looks quite blustery outside and I love watching the wind whilst being all being all snug and warm indoors.

Someone mentioned that I should make a list of things that I am looking forward to post-transplant. I have actually already done this, but just not blogged it, so I shall do so now. Incidentally for anyone who notices that there is an abnormally high number of things which involve me turning round and round for some reason or another and become concerned for my mental health, this is for a reason, it is actually because this random maneuver is most difficult whilst using O2, as it inevitably results in me being wrapped in green tubing (in manner of a human Christmas tree or similar) and has left me pouting and bleating for help in detangling on more than one occasion.

So here is my list I made a while back, of some of the completely inane, normal and everyday things I am looking forward to doing post transplant.

-Walk down the road (This is the image I replay in my head when I am feeling most down: to walk out of the front door with nothing in my hand except my keys…and just stride down the road, and hopefully to start running. I don’t have in mind a place I will be heading towards, just the fact I will be alone and empty-handed.)
-Walk up the stairs. All in one go. In fact run up them, probably tripping over and breaking several bones in the process.
-Go swimming (I used to swim loads, right from a very young age. As a child and loved diving down under the water and wished I was a mermaid).
-Lie back in a steaming hot bubble bath (lungs are currently not very keen on very hot water or lying flat)
-Dance in the rain and get ludicrously soaked (and then probably remembering that actually getting all wet and cold isn’t as romantic and/or as fun as one imagines)
-Twirl round and round until I am so dizzy I fall over (preferably wearing my rainbow dress where the skirt flies right out like a dancers dress)
-Actually learn how to walk in heels as have been cheating by using wheelchair therefore kidding myself that it doesn’t matter that I would completely stack it in 20 seconds.
-Blow up balloons and blow out candles (I will have to throw a party just to allow me to do both, what a shame).
-Go out dancing all night long, and especially dance with A (dancing in general is no longer very plausible but dancing with someone else even less so, due to tubing issue causing the majority of moves to be a major health and safety hazard).
-Roll down a hill (self explanatory for anyone who has ever let their inner child get the better of them).
-To stand and have a shower (I currently sit on bath board, which as several people have pointed out is probably the more preferable option and novelty of standing is likely to wear off more than quickly)
-Sing a power ballad (into my hairbrush, on my own in a soundproof room obviously)
-Decide that I must suddenly by some miracle be quite a sporty person, take up a random sport such as lacrosse or similar, have one lesson, and realize that actually it was a lung transplant not a personality transplant.

This is by no means an exhaustive list, it’s just one that I thought up one day in hospital when it was absolutely tipping it down outside - the kind of rain which has really big fat wet drops and therefore would soak you in sixty seconds – and looking out the window gave me a compelling urge to race outside and run around a lot. It makes me smile every time I read it, so am off to make a cup of tea and then re-read it some more.


Nicola said...

Those sound like wonderful things to do after your Tx.One thing I always wish I could do without the fear of getting soaking wet and ending up with a nice chest infection ,is to make angels in the snow.It probably isn't as fairytale as it seems,and more likely that people will think I'm some drunk lying in the snow lol.

Nicola xxx.

Anonymous said...

Hi Poppet, glad to hear from you again albeit if you do have to be undergoing treatment for those naughty lungs of yours. I so understand all your dreams - and I know all about not being able to lie down comfortably or relax in a bath. But it will all change, believe me, so just be patient a bit longer. Been there, done that. And the pleasure when you do get to do the simple things you can only dream of now.....it is ALMOST worth all the suffering.

Take heart. You are not alone and we won't let you be alone; always thinking happy healthy thoughts for you.

Claire221082 said...

Sometimes i read this blog when i'm feeling a bit pants and most of the time it does a great job at perking me up! Today it has done that very well so thank you

Mrs W x

Anonymous said...

may i also suggest the joy that is the seventies space hopper? preferabley a neon pink one. the handles always look slightly obscene but the sheer thrill of bouncing repeatedly around the garden/street/library (this last is perhaps the most challenging and yet the most rewarding) is second to none. i am currently in the library and having a surreal moment imagining you bounding past in a kind of salute to the antics of trigger happy tv! miss and love you muchly Em.xxx

Anonymous said...

It sounds like you'll be having a lot of fun after your transplant :) I hope you're doing well and feeling ok today! Sending you much love and hugs xxx

PS Char's space hopper idea is very good, but only if she joins you and I get to see the photos! Haha! ;) x

Anonymous said...

have a good night Emily (ok, I know it's a bit early but we're an hour ahead of you here so finished work for the day and no pc at home). Sweet dreams and thumbs up for good news verrrrrrrrrrry soon.

misdee said...

great list emily. peter has a similar list of small pleasures he is looking forward to post transplant. the main one being able to have a bath and soak. afterall he hasnt had a bath since july 2005. we say his skin will peel off if he gets in the bath ;)

Hope you get to complete your list soon.



Anonymous said...

I'm up for all those Em! Roll on the good times I say and we will both do them together with shiny and super new breathers. I shall look forward to it! Thinking of u always and seding big hugs. xxxx

Anonymous said...

Emily thanx so much for Rachs b/day message she had fab 19th b/day 31st Oct :D Enjoying last year of her teens!

Lets hope you will be able to achieve many of your wish list etc soon...........praying and hoping you get a call that can change your life soon........

(((hugz))) Elaine & all xxx

Anonymous said...

Hi Emily,

Love the lis of things you plan to do after getting your Tx really good luck with that.

Had to smile about your descriptions of oxygen tubing, I know how entangled my nebuliser tubing gets, it amazing the fixes you can into with it.

The very best of luck and I so hope that you will get "that call"


Fi said...

The list makes me smile too, and I'm wishing with all my heart that you get to do them all again.

Much love

Anonymous said...

Hi Em

Funny you should mention pink champagne.. did you get my parcel?

I love your list.. but think you are also romanticising rolling down hills.. it actually makes you feel sick as a pig of you are a-person-over-fifteen! (In my experience anyway..)

Thinking of you lots and lots

Clare x

Anonymous said...

I look foreward to seeing you roll down the hill

Take care

sal in Oldham

Maria said...

I go along with the space hopper theory, sounds like great fun to me. I'm just deciding if I can get to the library in time before it shuts.

One other small problem "No Space Hopper" maybe I could just roll around the library on a chair with wheels and shout out random boings, boing, boing, boing.

Great to hear you're feeling brighter about everything, and when you get your transplant forget the shower thing and swap it for the space hopper, sitting down in the shower is the best way!!!

Anonymous said...

Hi Emily, just a daily check-in to wish you well. I hope you are getting a good rest after your IV to let things settle down. If the weather is as cold as here, you are probably better off right now staying home nice and cozy, daydreaming about all the fun things you will soon be doing...........
Take care of yourself and keep warm.
all love, Janet

Ali said...

Will buy you some lovely bubble bath stuff for you when you've had you tx.Also can't wait to see you walking in heels!!!!!! no cheating allowed
sending you oodles of love

Anonymous said...

These are brilliant Em! So pleased you have shared your list with us all! Please promise me, when you get your new lungs, I can take you to the most perfect hill. we can roll down it together. (although I think we will need padding protection because there are some nasty thorny things!) I look forward to it!
love you

Anonymous said...

hi emily,
i love the list, especially the space hopper idea. at the nursery where i work we have a soft play area with two space hoppers. one pink one blue... as charlotte says in her message the handles do look slightly obscene lol

still thining of you every day, wishing and praying you get your call.

loads of love and support, karen prior & family. xx