Heading Home?

I might be heading back to Jersey on Thursday :)
It's only back to the hospital, I'm just not strong enough for home - I'm not strong enough to get further than the loo without a wheelchair! - but at least I might be able to have a few visitors, and they can bring me foooood :D
And that's about all I have to say I'm afraid! Sorry to bore you. I've been having small amounts of feed into my RIG, (not PEG, but basically the same thing I'm told...or have I said this already?) just half a Fortisip twice a day...it's making me feel really full and bloated, but it's a start and hopefully once i'm back to normal and moving around more etc. I will be able to tolerate more and so be able to get more than a measly 300 extra calories. Im definitely still down on my weight though its hard to tell because of all the swelling and fluid retention - I'm showing as around 39kgs but I think im probably still more like 33ish...my watch nearly fell off my wrist today it's so loose. Which is a bit of a worry.
I had another lung function today which came out at 21-22% again, so no real change, which is disappointing but not really surprising. If I don't have a transplant I could possibly carry on at this level for a couple of years, and I'll be trying bloody hard! But equally things could so easily go downhill too quickly to pull back...I'm feeling quite scared for the first time. I've never been scared of dying but since I've always seen 20% lung function as a sort of cut-off point - you either get transplanted or you're on your last legs, or something like that, for some reason - maybe it's just hitting home a bit.
The docs took me off oxygen yesterday afternoon and my Sats stayed around 94% which is about reasonable, so I thought I was finally free! But during the night they dropped to the mid-eighties which is less acceptable, so it was back to sore nose and oxygen tubing, and it looks like overnight oxygen may become a permanent fixture in my life. I'll have an official overnight oxygen test at some point while I'm in Jersey hospital to decide.
So there we go, I've babbled all my health news to you. I'm sure you found it riveting ;)
But this is for me to record stuff as well so *sticks tongue out at you*
Hopefully things will keep improving. Wish me luck - I don't want the routine of mother hen having to shower me to become permanent just yet please.
PS. Thankyou mummy bear, for being here and doing everything you do. I love you.

Home Sweet Home ♥

I'm home.
It's just fantastic :)
This morning I stayed in bed until it wasn't morning anymore, and there were NO doctors coming in to see me and tell me nothing, NO hapless medical assistants sticking me for blood, NO monitors bleeping or signs being measured, and NO disgusting hospital food being wheeled in to aggravate the nausea.
I got up at 1.30pm and ambled downstairs. Opened the glass doors up to the sun and ate fruit in the garden. I'm loving being home.

My tasks for today are as strenuous as eating as much as I comfortably can, clearing my chest as often as I comfortably can, watching as much tv as my brain can comfortably take! Not too hard. I can handle it ;)
Other than than, I'm amalgamating the one million mini lists that I have accumulated whilst being in hospital! My need for lists didn't fade, and not having the "right" notebooks with me means I now have several (hundred?) scraps of paper with scribbled lists. So I'm trying to take pleasure in creating one big list of all the things I need to sort in the upcoming days or weeks - I'm thinking fiercely positive and aiming for build-up of strength and stamina, and at least a good few weeks before I need to go anywhere near the hospital again. I have an appointment for Annual Review - my first in 2 or 3 years - around August 20th. Now if I make it that long without any contribution from doctors or new medication it will be a big surprise but a girl can dream, right? :)
I feel almost drugged, I'm so bright and positive -feeling. It won't last. But let me enjoy it while I can, okay?
It brings me down knowing some of my friends are back in hospital and in the state of mind that I was just a day or two ago... but I'm going to do my best to sort a little smile for them.

Majorly Violent Hiccups

...have plagued me the last two days.
But I'm breaking out of here! Wahoo :)
After an anxious day spent trying not to get my hopes up too much, the doctors finally came round and literally just said "Okay, so we're happy for you to go." All the waiting all day for THAT?! And I'd missed my usual flight by then. But now, after a very hectic hour spent panic-packing, I have just time to blog a little and munch my apple before I leave for the next flight. It's with a different airline to my usual and apparently the planes bear a resemblance in size to toy aeroplanes, so this should be interesting...

I am a very nervous flier.
HAha.

Anyways, slightly changing subject to distract myself from the shaking and sweaty palms I can feel approaching, I am so grateful that my dad squeezed a lot of my stuff into his bag to take back after he spent the weekend here... My case is bursting at the seams, and my big handbag weighs about as much as a small person. Oops! How could I have actually accumulated more stuff whilst being here? I sent the clothes I bought back with dad... And I would expect to have less than when I came over seeing as I brought bottles of Ribena and crisps and chocolate with me! Hmmm... I s'pose I do have a bunch of medications they've given me. Oh! I have a new neb! I finally got an eFlow wahooo :D Now yes, I know that it's tiny but when you first get it there is lots of extra bits and bobs. That must be it.


Ok, well, off to see if my toy plane can make it across the channel now :|
Wish me luck. xx
I can't wait to get home and do some crafty stuffs, I feel deprived of journalling and designing and making jewellery, I really do. I can hear my silver calling to me...

Cute.

Well, actually, before the cuteness, I must just mention the event that our little blogging world has been squealing over - Tori finally got her lung transplant! And yes I know it's late, and everyone else has already said it, my only excuse is the unbelievably unreliable internet connection in the hospital. I am just so so happy for her, and can not believe what amazing progress she is making already. I think she was off the ventilator after just two days, and out of the intensive care unit by day 4? Even if that isnt exactly right, it was very fast. Proud of you Victoria lovely :) Just keep on getting better so you can start making the most of those shiny new puffers!
Also just a thought for the donor and their family, and a thankyou to them for saving our friend's life.


A new follower of my blog, Mizz Ali, recently did a post of her own including awards, and awarded me TWO of them! Which is so lovely. Now I have never really come across these awards before but I will pass them on anyway and it is up to you if you want to pass them along after that.

First of the, the You're a Star award: apparently you have to say seven things about yourself. So...
1) I daydream about travelling every single day.
2) My mouth waters whenever I think of these huge prawns that you could get from M&S at Christmas, Even though they cost like £12 a packet i wish i could treat myself to one every now and then!
3) When my room is messy and unorganised I feel sick and so stressed that I can't sleep.
4) I LOVE LOVE LOVE sending letters, I have lots of penpals as well as writing to my real-life friends sometimes! I also LOOOVE giving gifts, and seeing people's faces when you've chosen the right one.
5) I think pugs are so ugly that they're cute.
6) I still sleep cuddling a teddy bear, I got it about 10 years ago.
7) A very bad habit of mine is starting new projects and not finishing them!!

Ok, well I award this blog to: . . . hmm, let me think.
Well I don't know, so I award it to all of you! So then I won't feel like I'm asking someone to do it lol. Plus, you're all stars, obviously! :D
The other award won't upload unfortunately, and it was really pretty too!



Other cuteness: In paperchase the other day, I bought stickers, postcards and a letter set in their new design, Day Trippers. Its so blimmin lovely:




In other news, I'm probably flying home tomorrow. So happy to be getting out of here, have to admit though, very disappointed in how little I seem to have improved, but the doctors are basically saying now that they don't know what else to do for me. I think they are trying to say that I just need to accept that I am getting worse, and I am going to stay that little bit lower each time I have a blip. Just need to work at it and try not to dwell on it I suppose. And get a move on with living a real life!!

Lots of love to you all out there.
xx