Archives: Day-to-day

I should have known before I went. When I watched The Bourne Ultimatum a couple of years ago, the shakey-shakey camera in the car-chase scene made me feel distinctly fuzzy-headed. In the morning, I took my AA tabs, which have a habit of making me feel slightly woozy.

So it’s hardly surprising that an entire film of running, screaming and a LOT of shakey-shakey camera – about which people are all given advanced warning – would not particularly agree with me today.

But ignore the signals I did and – in the hope of taking advantage of K having a day with her sister-in-law and the littl’uns – I set off to catch my second post-Tx double-bill of Cloverfield and Things We Lost In The Fire.

Since my comments section seems to have picked up on my movie opinions of late, I would love to be able to give you solid guidance as to the brilliance or otherwise of either of these films. Sadly, I only made it 3/4 of the way through Cloverfield before giving up completely and leaving, upon which I had just about enough level-headedness in my inner ear to get me home and into bed without throwing up, so I didn’t even get in to see Things We Lost…

From what I saw of Cloverfield, I have to say I wasn’t as impressed as I expected to be. I’ve heard such rave reviews about it from critics and friends alike, but I have to say I thought it was pretty ordinary. It was just a big monster movie, but shot in a very different style to the classic Godzilla-like epics we’re used to. It was hugely innovative, I’ll give it that, but the relationships and plot devices felt just as phoney and forced as anything you’d see in a regularly-shot Hollywood diaster movie. And I’m not one to be convinced my technical trickery that anything below-par is up to to a higher standard – a cliché’s a cliché however you choose to shoot it.

That said, I was hardly in the frame of mind to judge a the flick properly, focusing as I was on not throwing up from about 15 minutes in.

So today’s been a bit of a washout really.  Disappointing, but I’m sure I’ll get to the flicks next week to catch up on the good stuff and let you all know what’s what.

Hooray for pancake day!  I’m not actually massively addicted to pancakes myself, but K is a bit of a pancake demon and loves to cook them, too (which she happens to be great at).  Not only that, but it’s become a kind of tradition to cook pancakes for her bro’s family (including the little niece and nephew, plus big sis).

All of which means we got to have a grand old time playing, cooking and eating with the littl’uns and ever-so-helpful big sis (who actually took over a little of the cooking).  It also marks the first time since my op – in fact, the first time ever, we think – that I lifted the little ones up for hugs and cuddles.  Both of them were so happy and excited to see us and it was indescribable to finally be able to scoop them up and give them a proper cuddle, rather than having to find a way to crouch down amid oxygen tubing and other gubbins.

Earlier in the day, after a relaxing morning, K and I went out on what must amount to our first proper “date”, to catch a re-screening of The Golden Compass, which has hit cinemas again on limited showings because of it’s nominations for the BAFTAs and Oscars.  Sad to say, though, I loathed it with a passion.  Although I can see how the story is interesting, or at least could well be if told properly in the novels, as I’m reliably informed it is, the film falls way short of an acceptable adaptation.  Apart from anything else, it features some of the worst performances from child “actors” I’ve seen in a very long time – it’s like watching a very poor stage school performance which has paid too much attention to the glitz and glamour without taking the time to drag even vaguely realistic performances from the actors.

The adults do well with what they’ve got but the whole thing left me feeling slightly bored and uninterested, with no real sense of peril or suspense.  K’s told me she’s not sure, having read the books, she’ll be comfortable watching the next two movies, but having seen what I’ve seen today I’m not sure I’d be willing to give up my time to them anyway.

On a brighter note, the massive Xscape building which houses the cinema is also home to a number of out-doorsy-type shops, where we managed to hit the sales and walk away with a bargain pair of water/wind/weather-proof jackets to take away on the various travels we’re starting to plan up, the first of which being a week up in the Lake District for my birthday week in May.  I daresay they may also come in handy if and when we head to Durham at the start of March and Tresco in April.  Like the scouts, we are prepared.

The babies have definitely tired me out today and I’m ready to tuck myself up, but it’s amazing again to be able to reflect on the things I can do with myself now that wouldn’t even have registered on my radar six months ago.

Thanks for all your messages, it’s nice to know that’s it’s not just the two of us who are getting such a pick-me-up from my new start in life.

More and more firsts keep piling up this week.  It’s been a bit exhausting, but for the first time in a long time I feel exhausted and I can actually identify the myriad different things I’ve been doing over the last few days to induce the tiredness rather than sit here recalling the fact that I made an ill-advised trip to Tesco which has wiped out my week.

Last night, having got home from work – well, picking K up from work – we were exchanging texts with a friend of ours who lives in Luton who was feeling a little down in the dumps, largely due to being left in charge of the dog and having far too much time to himself to think, something which always bodes badly for those of us with slightly brooding dispositions (see previous entries in this blog for my own personal examples).

Naturally, we invited him up for a Friday night of fun and frolics in Bletchley, but since he had the dog to look after and work to be at in the morning, he couldn’t make it.  Without having to think about it twice, I immediately offered to drive us down there to take the party to him.  No sooner were we off the phone to him than we were in the car and heading South, an option which wouldn’t even have crossed our minds just a few short months ago.

We had a great night, picking up party food on the way, sitting chilling, chatting and catching up, setting the world to rights and coming up with the ultimate in Bat-plans for the coolest of dudes and then kicking back and taking in a flick to top the night off (the improbably brilliant and clever Fracture, which I’d highly recommend).

We didn’t leave Luton till after 11 and didn’t make it home till shortly before 12 – a late night even by current energy standards – but it felt fantastic to have been able to just up and go, to shoot off to be there for a friend in a way I haven’t been able to do for a number of years.

Back in the olden days, five or six years ago at the height of my time front of house at the Theatre, I used to do this kind of thing all the time.  Friends would call late at night (usually after a show had finished) and I’d whisk myself round to drink tea and talk things through till all hours of the night.  I’ve missed being able to do that for my friends, to be able to be there, wherever, whenever they needed me.  I feel like I’ve found another missing part of me and I’m welcoming it back into the whole with open arms and a wonderful excitement.

Just to add to the excitement and general, all-round super-happiness of the week and month and year so far, K got a letter this morning offering her an interview at City University in April, two days after the Tresco marathon.  It must be said that after her UCL experience and the rather blunt non-communication from Edinburgh (they informed her of her lack of success through UCAS, without evening deigning to write a letter themselves), K had pretty much given up on City.  To be offered an interview had us both grinning from ear to ear this morning and really topped off the week beautifully.

Of course we’re not counting our chickens or other similar jumping-our-guns-type metaphors, but there’s every chance we could be settling in London come September – me to a new start in my long-stalled career and K finally starting down the road she’s been aching to take since her teens.

Life has dealt us both some pretty raw cards over the last few years, but if ever there’s evidence of a deck-stacking Karma at work, 2008 so far has to be it. 

Back in the olden days of years ago, I distinctly remember plaguing my parents with moans about being made to walk far too far and the whole lark giving me sore feet.  Today, after over an hour wandering the shopping centre in Uxbridge (more on which later), I turned to Mum with an enormous smile on my face to declare, “My feet hurt.”

I’ve not done enough walking to make my feet hurt for pretty much as long as I remember.  There must be a time, three or four years ago, when I’ve been on shopping sprees with K in the days of our simple friendship, which ended with me having sore feet, but it really must be that long ago.

In the four-hour wait between tests and seeing the doc at clinic today, Mum and I decided to head off and explore Uxbridge, which is only a few miles down the road from Harefield. We found our way – surprisingly easily – to the main shopping centre and spent a good two hours browsing around and taking things in.  Unfortunately for my bank account, “taking things in” also included “putting things in bags” and since most shops are reluctant to let you bag things up without paying, my wallet came away a fair bit lighter.  That said, my wardrobe is now a fair bit fatter.  Or will be when I make room amongst K’s stuff for my new additions.

Clinic went really well, with my lung function up, weight up, X-ray clearing up nicely, all other obs stable and doing well.  My CRP was up ever-so-slightly, but we think that may be due to the semi-cold I have been suffering this week; it never fully developed but I’ve had the snuffles on and off since Monday.  The doc gave me 2 weeks of oral Zithro to ward off any nasties that may be lurking, but I think it’s unlikely that anything’s going to come of it – it’s more a protection measure than anything else.

The last few days have been such a joy – doing all sorts of things that I haven’t done for ages and just starting to feel normal again.  Today we finally managed to catch up on Christmas with K’s brother, which has been delayed and delayed after my stays in hospital and a combination of them and us not being well enough for us to meet up (bearing in mind I still have to do my best to avoid anyone with colds or bugs).

It was great to see not only them, but their new house too – a 3-storey affair which I’ve now got the lungs and the legs to enjoy a proper tour of.  Not only that, but discovered my fitness levels are also now up to the Nintendo Wii.  Dangerously addictive, that machine.

I think the most amazing thing about the last few days is being able to do things without thinking.  There’s no moment’s pause between the impulse, need or desire to do things and actually getting up to do them.  For so long I’ve been used to working out all the ramifications of what I’m about to do and how much it’ll tire me out, how much O2 I’ll need to take with me, what I need to save my energy for later in the day and everything else.  Now, if I want to do it all I have to think about is whether I have time to. (And possibly whether I can afford to….).

I honestly can’t believe how much my life has totally turned around and the fact that this is only the beginning fills me with the kind of excitement I haven’t known since I was a child.  It feels like the whole world is opening up to me and all I’ve got to do is reach out and grab it.

It’s amazing how out of the loop you get when you’re in hospital for a week.  I saw K most days while I was in, spoke to her on the phone at least twice a day not to mention exchanging obscene amounts of text messages, but somehow I still seem to have spent the day catching up on all the big news-worthy events of life in MK which appear to have slipped her thoughts while she found ways to keep me entertained in the Big House.

I have had a great day, though, quite apart from catching up on all the goss (which, incidentally, K claims she “forgot” in all the excitement of spending time with my in my room… excitement I wasn’t party to at the time, clearly, since I distinctly remember my room in Harefield being most very dull), I have had several cups of tea with visiting friends and also managed to do something I’ve not done for a long time.

This afternoon I did the most wondrous of Sunday afternoon activities: ODD JOBS.

It’s not until you’ve spent a goodly amount of time not being able to submit to your whim and fancy of “popping” somewhere to pick things up or drop things off that it becomes quite such a special thing.  That’s why today has felt so good, I think, because for the first time in a very long time I’ve been able to think of something that needed doing and just go out and do it.

Sitting around with a couple of friends this afternoon chatting about what computer one of them should pick up, we decided to swing by PC World to have a look, where I could also pick up an iTrip for my new iPod to play it in my car and replace the fumbling around with CDs that has been the case up to now.  Following which we skipped across to Borders (where else) to pick up a scrap book to help us plan our many and varied travels we’ll be taking as I get stronger and more free to move about without the restrictions of clinic appointments and potential hiccups.  Including a quick swing past my ‘rents house to pick up our spare house and car keys, we weren’t out for longer than about an hour-and-a-half but it was the most wonderful feeling to be able to follow an impulse and get things done.

The first few months (well, 3-6 if you listen to the docs) post-transplant are supposed to be the big rocky patch, with hiccups here and there and the occasional (or not-so-occasional in my case) knock-back.  But I’m fast discovering that they are also the times of the biggest revelations about what life is truly going to be like with new lungs and just how much of a difference to the every-day they are going to make.

Here’s to a week free and clear of hiccups, clinic trips (bar my appointment on Thursday) and a more settled routine, including getting into proper training for the Tresco mile.  Anyone fancy a cuppa and in MK, you know where to find me – I’m the one sitting on the sofa grinning.

Freedom at last – after a week spent couped up inside despite feeling just as well as I had the week previously, it isn’t half a relief to be back at home and within my own four walls.  Even if I don’t leave them for the next 7 days, it’s going to be a heck of a lot nicer than it has been on E ward this week.

That’s nothing against E Ward, you understand, it being the very best of the best places to be if the docs suspect you’ve something dodgy going on in the new blowers they implanted, but let’s be honest: hospital is hospital.

Interestingly, I didn’t find this 5 night/6 day stretch as hard going as my previous one (just a week prior) – I was fairly upbeat and resilient the whole way through.  I think it largely had to do with the fact that when I was admitted the team let me know straight away that I was going to be in until Saturday at the earliest, most likely, whereas the previous week every day had been a will-they-won’t-they let me go connundrum whic, upon the arrival of the nigh-on inevitable “won’t”, always served to deflate and depress me – getting one’s hopes up in a hospital is a bad plan at the best of times, but when you’re feeling physically fragile, too, it’s never good.

Still, three days of being pumped full of more steroids that the US sprint team and the Tour de France combined have served to set me back on the straight and narrow (we hope) and get me sent home for a glorious span of 5 days before my next clinic appointment.  Getting discharged on a Saturday is usually no mean feat, but luckily for me, my team were on duty this weekend, which meant full access to the key decision makers who could kick me out at will (mine or their’s, I’m not sure which yet).

All I have to show for my week’s stay in the Big House this time is a severe sleep-deprivation hang-over.  One of the side-effects of the Methal Prednisalone (the IV steroid they put me) is sleep disturbance and although I managed through the first night with just a bit of a late nod-off and minor leg-cramps, last night saw me lie awake until 6am before being unceremoniously awoken for my breakfast at 7.45.  Under 2 hour’s sleep does not for a chirpy Oli make.

Still, it’s hard to moan too much when I’m just happy to be out and back home.  Perhaps the total lack of sleep last night – and my managing to stay awake throughout the day so far today – will do me good in getting me off to sleep nice and swiftly tonight.  One can only hope.

Oh, the only other good thing to come from having far too much time on my hands in hosp for the week was a chance to get started on the treatment for my next writing project – a low-low-budget flick about a band on tour which I hope I’ll be able to knock out in quick-time and see about getting shot sooner rather than later.

Of course, like most of the projects that get mentioned on the blog in their formative stages, there is bound to be a mishap which gets in the way of this one at some point soon, but then perhaps this will be the exception that proves the rule.  Watch this space is about the best I can say, I guess.

I’m off to flop in front of the telly to try to stay awake till my last dose of daily immuno-suppressant is due at 10pm.

For those of you who read this in time over the weekend, pick up a copy of tomorrow’s Observer, where I *should* be featuring prominently in a health-article to back up the paper’s continued push behind the Opt-Out campaign.  For those who can’t get out to pick one up (and thus see a picture of my lovely mug) I shall endeavour to post a website link up here as soon as it’s up.

Unlucky everyone, you’ve got me back while Oli  is ‘doing time’ on E ward until he gets parole.

As many of you who have been following this blog for a while will know, Oli likes to keep the docs on their toes as his body often finds new and intriguing ways of baffling them.  Yesterday after the bronch’ the doc’s talk was swinging away from acute rejection and towards a fungal infection (I’m thinking athlete’s foot but in the lungs).  Today the definitive answer is that Oli has Organising Pneumonia.  Weirdly it is not as the name suggests, it is not pneumonia.  I will try and explain what I understood from the doc but if you would like to read a more clever description please look here, http://www.chestjournal.org/cgi/content/abstract/102/1/2S.

The simple version is…Oli’s got goo on the right lobe of his lungs.

The lucky thing is that treatment is easy and relatively quick.  It is also the same treatment that they would have given had it turned out to be a bout of acute rejection, basically hit it with massive amounts of IV steroids over 3 days and then oral steroids for several weeks.  There have been murmurs of letting Oli home after the 3 days of IV’s but we’ll see what happens, I don’t want to get anyone’s hopes up, least of all mine and Oli’s!

As a sneaky side note, due to work schedules and other such annoying things it is possible that Oli might not have any visitors on Friday.  Now although I’m aware he is all big and growed up and will get through it with no fuss, if you have a spare moment, please drop him a message on here or txt him if you have his number as I know it might make him happy to know people are thinking of him even if no-one can be with him.

Thanks and hugs to you all, K x

The inside four walls of Harefield hospital are starting to become depressingly familiar.

Don’t get me wrong, it’s a great place, with experienced medical teams who are – in my humble opinion – second to none. But every now and then – just occasionally, mind – I do find myself wishing I could spend more than 4 days in a row at home without getting myself admitted back onto E ward. Or F. Or any alphabetical character’d ward in the place.

Give me my due, though, at least I’m giving the docs a variety of ailments to deal with – Heaven forbid I should make their job dull and repetitive. First off we had high Tac levels, swiftly followed by good, strong infection, chased down with Norovirus with a sprinkling of chestiness and now we have my first official episode of rejection.

Now, I’m assured by people who know a lot more about these things than me that this is perfectly normal within the first year and particularly the first few months and is nothing to be worried about.

My lung function hasn’t picked up since the touch of infection last week, indeed it’s dropped back ever so slightly, and combined with a stubbornly low level of Tac in my blood, the doc’s are left to presume that, what with my infective markers all dropping and me feeling grand in myself, rejection is top of the list of possibilities.

What this means is a wee holiday on the ward so they can perform a bronchoscopy tomorrow (Tuesday) morning to take a biopsy of the lung tissue to have a good look-see.
For those of you who prefer non-medical, they’re gonna chuck a camera down me gob and snip out some bits of me blowers to see what’s causing the hissy fits.

To say I’m scared would be to over-state it – I have a team I trust 100% here and if they say it’s cool I believe it’s cool – but I still can’t escape the niggling reminders that they last time I was knocked out for a “routine procedure” I woke up a day later in ITU on a ventilator and dialysis. Not fun.

Doubtless this is all going to go a lot smoother, but I will certainly be glad to see the ward staff at lunchtime tomorrow and know it for sure.

For the time being, I’m now enjoying my stay in my 4th room on E ward, my 5th room between E and F in the last 2 months and that’s not counting the two spells on ITU.

One day I swear I’ll get to spend a whole week at home with my new lungs. Now that’s gonna be a novelty.

 Update…Oli is fine, just a bit of a sleepy head because of the general anaesthetic.  Unfortunately we haven’t seen the doctors so don’t know how it went but we are working on the assumption that if there was anything serious they’d have been in to see him before now.  Will post news tomorrow once we’ve got biopsy results.   K  x

I’m back.  24 hours back, in fact.  Stupid viruses.

After hurling myself inside out for 24 hours, I managed to stop only to discover it had either caused or masked a lovely little infection, for which the docs started plying me with IV anti-biotics and wouldn’t let me home.  Wouldn’t let me home for 4 days.  Grrr.

Still, I’m back now and basking in the warm glow of a doting girlfriend and freedom to do what I want (as long as it involves sitting spending quality time with K).

Also feeling very excited about the Organ Donor Taskforce report published yesterday (which I would link to, but let’s face it, how many of you are going to wade through 66 pages of Government-commissioned report if you don’t have to?).  Essentially, it recommends a number of not-particularly expensive solutions to current problems within the current donor/transplant network in the UK which they are confident will – if implemented as the Government say they will – result in a 50% increase in the number of transplants in 5 years.

Amongst other things they talk of making assessment for donation the norm, rather than the exception, in end-of-life care, as well as dramatically increasing the number of Donor Transplant Coordinators and retrieval teams, all under the coordination of a central organ donation organisation.

This really is a massive step forward for organ donation in this country and is actually far more important than the possibility of switching to a system of presumed consent, as has been discussed in the news this week.  The so-called “Opt-Out” system may well increase the number of available organs, but without the infrastructure changes behind it, is likely to do very little to actually increase the number of transplants that are carried out in this country.

That said, the presumed consent debate is a fantastic one because it’s getting everyone to talk about organ donation.  If the 70% of the population who say they are happy for their organs to be used after their death all signed up to the organ donor register, there would be no need for an opt-out system anyway.

Other than that, I’ve got very little going on at the moment – keep trying to plan things but having stupid lung-related hiccups getting in the way all the time.  Anyone would think that 8-weeks post-transplant isn’t very long to be trying to get up and about and leading an active, multi-disciplinary lifestyle.  Honestly….

So here I am with my butt parked in the very same room I was sat in almost precisely 8 weeks ago waiting to be told my life was about to change forever.

Thanks to the wonders of the now famous (or is that infamous) Norovirus, F-East ward of HAREFIELD beckons again. I don’t remember my last visit here being quite so deeply involved with vomit and isolation, but there’s a weird sense of calm and good omens that comes with being back where my journey began two months ago.

As it happens I don’t think I’ll be here much longer – I was admitted yesterday mainly so that they could give me IV fluids through a drip to replace all the stuff my stomach was resolutely rejecting and sending back out from whence it came, and also to give me my immunosuppression IV as well since there was no chance of me absorbing the oral pills.

I’ve a bit of an infection rearing its head in my chest, but that’s much to be expected when I get knocked back at the mo, and should be easily sorted by a short course of antibiotics which shouldn’t keep me in here.

K has written a nice pleading note to the docs in Scrabble tiles (we couldn’t find any paper) so I’m sure doc C is going to be convince by her superior medical knowledge and eject me straight from his rounds in the morning.

Watch this space, I guess…