Monthly Archives: November 2007

It’s been a nervous 24 hours here since the cold reared its head and it was made all the worse last night after I spotted a problem with the line into my port through which I give my IV’s.

I noticed while I was doing my afternoon dose that the line had gone a little cloudy, but didn’t think much of it.  By the evening dose, it hadn’t cleared up (as sometimes happens) and had a couple of distinct breaks in the cloudiness which started to concern me slightly.

Anyone with a port-a-cath will tell you how protective they are of them, not least people in my position as the loss of use of a post through breakage or – God forbid – infection is a serious problem: replacing ports is not the kind of thing that can be done on a whim and while it isn’t what you’d term “major” surgery, it’s certainly more than most doctors would like to be performing on someone with end-stage lung disease.

With all these thoughts running through my head, I took the executive decision to not give my next dose of IV’s until I’d been to Oxford to get it looked at and replace the needle and line for a new one.

After a late-night phone call with Mum, we hastily arranged a lunch-time pick up when she finished work (trampling all over any other plans for the day she may have had) and I settled down for the night after pumping another mini-monsoon of First Defence up my nose and downing a handful of Vitamin C caps to try to ward the cold off, too.

For once I slept absolutely beautifully.  Without my morning dose of dugs to do, I slept clean through till 10am, when K’s alarm woke me.  Lucky it did, really, because it didn’t wake her, so she’d have been in a spot if it weren’t for my eagle-eyed sense of hearing. (Yeah, I know, that confused me, too.)  That said, I’m sure she’ll jump to defend herself having already been out of bed once to answer the door to a nice delivery man.

A quick call to my team in Oxford and the ever-brilliant Cass opened up a slot for me early in the afternoon.  I checked with Mum and we were all good to shoot on over once she’d got her morning at work out of the way.

I got up slowly and rumbled around the house, hesitantly waiting for the cold to hit with full force, but nothing really materialised.  My sinuses were much less clogged and though I struggled a little with my physio first thing, I managed to clear a good bit and get my nebs done before Mum arrived.  I grabbed some Lucozade for the journey and hopped in the car, leaving K at home for a study session with a college-mate.

Cass looked me over and gave my port a quick once-over and agreed that it didn’t seem to be anything too untoward, although she’d never seen anything like it either.  She swapped my needle out and reaccessed me, giving it a good flush to check it out and all seemed well.  We agreed that although the cold doesn’t seem to have taken hold, an extra week on the IVs wasn’t going to do any harm.  I can’t have been there more than 20 minutes before Mum whisked me off again, but it was worth the 3 hour round trip for the piece of mind it gave me.

We got home just before half-three and I connected up my afternoon dose of IVs and hit the sack to recharge my batteries.  I woke an hour later feeling really quite energised, hit my nebs and did some physio before dinner.

I think – touch wood – I’ve managed to ward the cold off, so am hoping that another good night’s rest and another day not doing too much should keep me back on the well-wagon and I can look forward to another weekend with family and friends.

Off to catch tonight’s episode of Heroes now – we’re all addicted and we’re only a few weeks from the end of the season!  Hooray!

Not much more to say, really.  Am feeling utterly deflated that at the end of 2 weeks’ IVs which have boosted me rather wonderfully and got me feeling very good and positive, I wake up this morning with puffy, stuffy sinuses and a whisper of a headache, which has spent the day hovering between going away and worsening into full-blown cold.

There’s not a lot I can do to keep it from setting in full-blown, I don’t think, certainly no more than I’m trying, which is lots of rest with lots of calories and spraying First Defence up my nose like teenage boys spray cologne on a night out.  The plus side, I suppose, is that at least I don’t smell as bad as they do.

Thinking about it, I suppose I have to take the blame for the onset of the cold, since I did make the mistake of saying yesterday that I wanted to be productive today and get things done.  If this blog has proven one thing over the last 12 months, it’s that whenever I talk about getting things done, something crops up to get in the way of it.  I really should learn just to keep my mouth shut.

Realistically, it’s more likely than not that the cold is simply my body’s reaction to a frantically busy weekend – it’s a long time since I’ve had 3 night’s of “entertainment” in a row and although I rested a lot in the day times, it must still have worn me down.

It’s frustrating and – as always – a little scary to be coming down with something, but at least I have the security of knowing that I’m getting it at my very best point physically.  I’m just a day from finishing IV’s (which will now be extended by another week to cover any knock-on effects from the cold) and still on steroids, which means my appetite is good, my chest is as good as it ever gets and I’m firing on as many cylinders as I’ve got.  If there is ever a “good” time to get a cold when you’re aware of the possible consequences to a pair of dodgy blowers, this is it.

So I’m off to get some more physio done, shovel down some more food, suck down some more Lucozade and pray to the Big Guy to keep this one mild.  All help appreciated, if you’re so inclined.

So Saturday night was a bit of a bump, but Sunday and Monday have been a much more even keel – I’ve stayed resolutely on the positivity band-wagon, although I may have slid sideways a couple of times.

Yesterday morning vanished into nothing – a brief wake-up call at 7am to do my morning drugs dose, but the rest disappearing under the covers after another late night.

Shortly after the turn of noon, having stumbled out of bed, K’s Dad swung by with the visiting boyfriend of her Hungarian cousin.  Actually, technically, I don’t think they’re cousins, but once you get into the Hungarian side of the family I’m afraid I rather lose track of her clan.  I can only just keep track of the English side, but that’s because they’re inconsiderate enough to have 2 Uncle Peter’s, which is just foolish if you ask me.  I don’t see why they couldn’t have drawn straws for a name change to help me out just a little.

I digress.  T’s English was immaculate (handy, considering the state of my Hungarian) and it was really nice to meet him and chat.  K was revelling in getting first-hand details of all the goings on with her Hungarian cousins, one of whom is due to have her first child any day now.  K was keen for T to let his other half know that being an Aunty is “the best thing in the world”.  I ventured to point out that I daresay being a Mum might be considered to top it, but I always get shouted down.

They didn’t stay long, since K’s Dad was taking T off for a round-the-houses meet-and-greet of the rest of Team H over lunch.  I should think he got back to his apartment in London absolutely shattered after getting through the whole gang.

In the evening, we headed over to my ‘rents to catch up with them and have a gorgeous roast.  I know everyone always says it, but my Mum does the BEST roast dinners in the whole wide world and last night she even managed to out-do her usual high standards.  It was but a whisker short of perfection. (The whisker being Tio’s, their lovely little cat, who brought us a wee mouse as a pre-dinner snack).

After dinner we played chilled out and played games for a while before K and I headed home as everyone but me had to be up for work in the morning.  Not that it means I get a lie in as I had to be up for my drugs anyway.  Sometimes you just can’t win.

Today has been a generally un-taxing day.  I’ve not felt 100%, but it’s most just tiredness, largely caused by a busy weekend and the usual end-of-IV-run lack of decent sleep.  Having to be up every 8 hours to do drugs doesn’t sound like a bind, but when you figure it means you only ever get around 6 hours of sleep at a given time, it starts to wear you down a fair bit.

I did manage to catch a movie I’ve been trying to peep for a while now, which actually ended up disappointing me greatly, so I’ll not even go into detail here.  Suffice it to say I’ll not be awaiting the next QT flick as eagerly as I did this one.

Tonight, once K got in from work, apart from nebs and physio, plus another 20 minute bike sesh, we’ve basically just been in front of the telly finishing off the third season of Lost, which just totally blew us away – it’s amazing.  If you’ve never seen it, you absolutely have to go out and get all three seasons in their box sets now and check them out – they’re completely compulsive viewing.

Now there’s just time for another dose of drugs and a catch-up on some of last night’s telly while they go through and it’ll be off to bed and start again in the morning.  I’m determined to be productive tomorrow.  Watch this space.

That’s the sound made by me hitting yet another low after a nice 48 hours of high.

I’ve been um-ing and ah-ing over whether or not to drag down the recent positivity of my posts by indulging in my slight rearward step, but on reflection of the last two days I realised that what this blog started out as was a way for me to keep track of the course of my progress up to and hopefully beyond the point I receive my new lungs.  It seems entirely counter-productive to gloss-over the bad bits in order to spare what few regular readers I do “entertain” on here from being exposed to more difficulties.

Yesterday was actually a really good day – spent largely in bed/on the sofa doing very little indeed recovering from Friday’s grand night in, then sharing a lovely meal with K’s ‘rents which saw us pass over her Dad’s 60th birthday pressie (which is only 6 (and a bit…) months late).  Was worth the wait, though – we got a photograph he had taken in Central Park blown up and printed on to canvas for him and it looks amazing.

It wasn’t until after they had left that the day slid away from me.  Every night I sit at my computer in the study and do my nebs and casually surf around the ‘net for the 15-20 minutes it takes, most often taking in other people’s blogs and catching up on friends’ news.

On Saturday night, I made the mistake (it would appear) of clicking through into Facebook while I was browsing.  It was there that I found a new batch of photos a friend had put up of the festivities at another friend’s wedding.  The happy couple (God bless them, in the most sincere way possible) are friends I used to work with at MK Theatre and have enjoyed many a night out with over the years, both at work and outside.

Clicking through the newly-created photo album (put up by someone who clearly left the party too early if they were awake and/or sober enough to be able to connect their camera to a computer and upload the pics), I was met by face after face of happy, smiling people with whom I’ve enjoyed countless brilliant nights out over the years I worked at the Theatre and, indeed, since I left.

It struck me suddenly – in that sort of round-house punch/kick in the crotch kind of way these things tend to occur to you – that it’s been a very, very long time since I was out with all of them.  In fact, it’s been a very, very long time since any of them would even have thought to bother to ask me to go out with them.  Not through any fault or malice on their part, but simply because they know I wouldn’t be able to join them.

Sitting looking at happy face after happy face, smiling friend after smiling friend, it slowly dawned on me just how long it’s been since I’ve done anything remotely “normal” for a 25 year-old who claims to work in the Theatre industry.  I’ve not been to the Theatre, I’ve not been to the cinema, I’ve not been out for a drink, I’ve not even been out for a latte or “done lunch” – it’s not just “normal” that I’ve missed, I’ve even managed to lose “pretentious” too.

I suppose it’s a positive reflection on my state of body/state of mind at the moment that I can sit here after the fact and see inject some humour into it, but it really did hit me quite hard as I flicked through the album.  Some kind of intense sense-memory came washing over me and I could hear the voices, the laughter, the banter, the music; I could see the suits, the dresses, the dancing, the staggering, the pretty, the happiness and everything else.  I wanted so badly to be back there, to be laughing, singing, drinking, dancing – just being.

When I first started this weblog almost exactly 12 months ago, I truly never would have believed that without my transplant I would still be writing it today, so it is with no little understatement that I suggest it’s not a bad thing to be here – sitting comfortably in my desk chair, living with my wonderful girlfriend, having spent an amazing weekend enjoying the company of my friends and both sides of my family – complaining about not “getting out” enough.   If there was ever a “meaning” to this blog – a reason, plan or intent behind it – it was to remind myself of the good things in the face of the bad things.

So it is with a deep breath in and a sigh of appreciation that I thank Last Year’s Me once again for providing me with a place to come to remind myself that no matter what’s going on in my life, my body or my head, things are never as bad as they seem, that there’s always a light at the end of the tunnel and that the most important thing in life is to keep on keeping on – Smile Through It.

It’s been a while since I had such a straight-up, unabashed, pure-and-simple really good night in with friends.  Last night I had one and it was one of the most simplistically wonderful things that I’ve experienced for a while.

Having decided rather last minute that the best way to combat our household’s fear and loathing of fireworks, K and I set about recruiting the usual gang of easily-entertained appendages to join in our frivolities.  We also took the opportunity to finally go out and splash a bit of cash on the Scene It board game I’ve wanted for a while.

The whole evening was really terribly refined, in a loud and rambunctious kind of way – no alcohol, no TV, just a group of friends laughing, chatting and playing games, sometimes all at once, sometimes in a strange mish-mash of the three.

Whatever we were doing, though, it was just lovely to have the guys round and to be enjoying myself without feeling totally exhausted.  I’d had quite a quiet day, keeping myself in check and not getting too over-excited about things so that I had the strength to make the most of the evening and it really paid off.  The all eventually left around 1am and I was still feeling really good – a bit of a rarity for me.

We got through games of Scene It, Scattegories and Simpson’s Monopoly, the last of which having the bizarre novelty of now being a cash-less game.  Each player gets a credit-card, which is inserted into a little electronic calculator to add or remove money from the account.  It’s a great idea, but sadly doesn’t really work in practice.  The novelty wears off after about 5 minutes, by which point you’ve realised that every transaction takes 5 times as long as it did with cash and that it’s now impossible to a) know how much you’ve got in the bank without having to ask for the machine to check and b) know how much everyone else is stock-piling to help make those cash-rich deals to the hard-up players.

It was just such a great night and we all had a great time.  I honestly don’t think any of us noticed the lack of alcohol, which goes a long way to proving my long-held belief about having more fun without it than with it.  I won’t lose myself in an anti-alcohol diatribe here (because you don’t want to hear it anyway), but suffice it to say that it wasn’t until K pointed out the party’s dryness the next day that it even crossed my mind.

I haven’t been this excited about random developments for ages. I don’t think I’ve actually EVER been this excited about developments relating to fitness-type stuff. But I’ve just climbed off the shiny new exercise bike sat not 3 feet from this screen and I feel fantastic – this biking lark seems like it might just be the key to breaking the back of this fitness-malarky.

It’s such a bizarre feeling to sit on the bike and be doing real, proper exercise but not to feel completely breathless and deflated by the whole thing – to find a type of fitness which is enjoyable and beneficial without being a real battle of will power to push through the pain/breathlessness barrier.

It appears that the slower slope of desaturisation that I was talking about yesterday is much more significant than I’d first thought and that I can actually go a lot longer on the bike than I’d hoped without gasping for air or feeling like I’m going to keel off it. Rather, I can actually get to a stage where I can really feel the muscles in my legs being worked hard and doing some stretching and improving of their own.

It’s indescribable to feel that I’ve found something which can make the “working” parts of my body feel included in the day-to-day running of life – like their being paid at least a cursory bit of attention rather than being glossed over in the fight to keep the lungs ticking over.

I keep having all sorts of qualifiers about the relation of current treatment/steroids etc to the improvement in my chest and exercise tolerance and everything else swirling around my head at the moment, but right now I feel so good, so happy, that I don’t want to sit here and qualify things.

It’s not often these days that I get a chance to just sit and be excited about something going well. And I know that “not-so-good” may be just around the corner – as it is for all of us – so I’m blowed if I’m going to sit here and not let myself enjoy this feeling for tonight.

I’ve found something I can do physically that doesn’t make me 2nd best to a 3-year-old child and much as you may laugh, that’s a really, really big thing for me. Tonight, even if it’s “for one night only”, I’m enjoying it.

Big smiles and hugs to all!