Wednesday, 31 July 2013

A very merry un-birthday

It was surreal being back at Addenbrookes last week for my biopsy. I was in the room next to room 23 where I spent the majority of my stay (room 24 now I'm 24!), but the same green rural view. Now however, the fields that before were dusted with snow are now full of chunky diggers as the work starts on what I presume will be the new extension of the hospital. I was only there for one night - my results came back late afternoon which showed slight rejection, but should be sorted by increasing one of my drug doses. A slightly shorter stay than last time eh!

All the slight niggles that were bothering me in the last post seem to have been resolved - I had been started on an aminophyllin tablet which aims to open the airways, and hopefully stop my breathlessness. However the doctors thought it could be that which was making me sick, and on stopping it i've been feeling much more myself. The breathlessness is still an issue - it's not debilitating, however being used to such reasonably dreamy lungs I can't help but feel constrained by this onslaught of tightness. It is an issue, and I seem to now have a constant reminder of shitty lungs which takes its toll mentally. I've been lucky never really feeling like this before, but I can now see how it can prevent you just doing normal things.

It's also pretty safe to say I still have a blob head. Chipmunk cheeks. How long on god's green earth does it take for steroid shit to get out of your system? I've even been naughty and stopped my overnight feeds to see if losing weight will help, but it's the same. Chill, i've re-started my feeds now like a good girl. My appetite seems to be slowly creeping back too which despite the mental tug-of-war with my weight, i'm really pleased about.

Continuing my naughty streak, I didn't renew my gym membership so havent gone to the gym in about 3 weeks. What I keep telling my mother is that it's just too hot. That is a perfectly acceptable reason. I don't want to drown in my own sweat or, I dont know, get heat rash? I think it's fatal. Thankfully, as I write those grey clouds are closing over, the sun is deciding that torturing us was fun while it lasted, and drops of rain are starting to land on my window. These few days of rain and storms have heralded in the cooler weather, and therefore the start of Laura being good again. (I think?)

I won't completely shit on the summer; my favourite part is lying in bed at night, windows and blind wide open, watching the sky and feeling that very welcome breeze. I normally sleep with my blind closed, but I now find myself counting stars, watching planes that are like stars on steroids and the surprising speed in which milky grey clouds stream across the sky. Then seeing a bug fly in, freaking out and spending half an hour trying to find it and squish it, not always successfully. (Now i'm tethered to the feed pump again i'm thinking I might close the bloody window...)

Anyway, i'll leave you with a picture of probably the best item of clothing ever. Yes, ever. I had my 6 month sparkly bits anniversary last week (mum threw a little party lmao). Happy half birthday LIV II and Panc II and bit of gut II. Hope you're happy in der.

Thursday, 11 July 2013

After the storm...

It's been super being home. I've been doing normal, lovely stuff, whilst soaking up this glorious sunshine. Even if I despise this current heat, the sun has definitely been making my 6 weeks of re-adjusting pretty sweet and sparkly.

I've had a great mix of taking things easy with living life to the full again. Some days I chill with my puss cat in the garden or on the sofa, indulging in wonderfully crap TV, eating ice lollies. Other times i'm whizzing out, seeing friends - I went to the ballet one afternoon on a whim - and cycling round the parks and quite streets near by. I've actually been cycling a lot, my run of low lung functions whilst I was in the Brompton spurred me into this crazy 'get fit' routine, and now I feel bad if I dont go for a cycle everyday. I don't, but nearly! I also joined a gym. I know right. I'll let that soak in, for god knows i'm still soaking it in. Again, it's things like this that lead me to believe the surgeons did in-fact tamper with my brain. That suspicion just grows everytime I embark on another ludicrous notion such as this gym malarky.

A gym.

So there I am, about 3 times a week, puffing away on the cross trainer, or looking like a sexy wet beetroot on the treadmill. Sometimes I despair that i'm the sort of person who goes to a gym. The worst bit is, I cycle to the gym, just to cycle going nowhere in a stuffy grey room (listening to Robin bloody Thicke on the tele) for half an hour, then cycle home. Anyway, all this stupidness is paying off, because at clinic on Monday my lung function was 50% and 74%. My best ever is 60% and 80%. Woohoo! My FVC is only 6% down from best ever! Chuffed OR WHAT. I'm also over the moon my steroids have finally stopped, so maybe the face I once knew can now emerge from the bloated mass that's currently residing on my head. Of course, everyone says it's fine, but c'mon. I know what my face should look like. My weight has also rocketed up to 47.2kg (I gained a kilo in 10 days!), so the shudderingly fragile limbs that I once rocked are slowly becoming slightly more normal looking! It feels great.

It's not all fantastic - despite my awesome weight my appetite is utterly dismal, i'm incredibly tight, I have these weird waves of nausea that no-one can work out what the cause is, crazy headaches, and the initial whoosh of feeling incredibly perky seems to have lulled somewhat and I find i'm gradually waking later and later. At Addenbrookes today, they said they want to do a liver biopsy as my liver levels are slightly raised, and have been for a few weeks. I hope whatever is annoying little Liv II can be easily fixed. I also have a hernia operation planned, though I asked if it's possible without a general just a local anaesthetic, as I dont want another lung collapsing! It is, but he's pleased i'm a "brave lady". I said, "Gimme oxygen and 3 pillows and it's all gravy." We'll see how tough I really am eh! (HOLY SHIT)

I've also been forming plans about what I want to do - as it seems you have to get a job to be a respectable lady these days. Ladies of leisure are on the wane. I think I want to go into advertising, so i've tentatively been hunting for paid internships, though of course getting distracted by cats, and Home and Away. And the internet. And clinic appointments. And sputum. And Big Brother. There's maybe an opportunity to do a paid internship at a Law firm too, so i'll have a think. To be honest i'm in no rush, as i've only been out 6 weeks, and obviously things are still a little fragile. I'm also beginning to realise these so-called 'proper' things dont allow for watching Aussie soaps as a matter of urgency, which is taking a bit of time to get my head around.

It's just refreshing knowing that I can think about these things, and as long as nasty chesty bugs hold off and liver biopsy results allow for an easy solution (pray to the science god), there's not much to stop me. POW. Here's some sexy not so sexy shnaps:

A 'chillin with cat bum' selfie
A 'drinking cocktails' selfie
A 'making the most of a Cambridge clinic visit' selfie