Archives: Friends

I say family, because to me my Godson is my family, although technically the bloodline isn’t there. But today I got to spend a few hours round at his place playing, chatting, introducing K to him and his wonderful parents and it was so lovely as to be almost indescribable. But you know me, I’m going to try…

K had to work all morning, which left me at home to my own devices, something which is never the greatest of ideas when I’ve got something to look forward to in the afternoon, because I tend to not be able to think of much else and so meaningful work is always a little hit-and-miss.

As it happens, I managed to use the time to surf the internet for filmmaking websites and news and such, which has helped inspire and drive me forward with a few of the projects I’ve got rolling along in the background at the moment. My docs at Harefield are keen for me not to start doing any “real” work for a while (6-12 months post-op), which is both freeing and frustrating. There are many things I want to do with myself right now and a few projects I REALLY want to get going on, but at the same time I’m sure in the long run the enforced slow-down will only benefit them all by making me take stock of them properly and devote enough time to thinking them through and planning them properly.

I picked K up from work at half two and we shot straight over to Little R’s house to catch up with them for the first time in…well…. blinkin’ ages. I thought his Mum wasn’t ever going to let me go from the massive bear-hug I was enveloped in no sooner had I stepped over the threshold. Not that I’m moaning, you understand, since I felt pretty much the same way seeing all them again.

I feel like I’ve been so much out of R’s life for so long now, since he lives so close, but it’s been such a struggle for me to get to see him. Now I’m starting out again, I’m hoping we can rebuild our relationship back to how it was early on before I got too ill to do anything with him. We’re already planning an ice-skating trip for the Easter holidays!

Plus, I got to be made hugely jealous at the family’s beautiful home cinema set-up. Not only have they got a PS3 (with Blu-ray, which just won the HD DVD format war for those of you who missed that piece of news) but also a gorgous 40″ HDTV and surround sound system to play it through. I’m not the most materialistic man on the planet, but I have to confes to a slight weakening of the knees when it comes to film-watching in the home (and filmmaking outside of the home…). Anything else I can take or leave – if it’s film-related I think I’d rather take it. Terrible of me, I know.

K and I then came back and veg’d good and proper for the night – some lovely sausage-and-chips comfort food and a night in front of the telly.

We caught the new series on BBC3 Being Human, which I have to say massively impressed me. The idea of a flat-share between a Vampire, a Werewolf and a Ghost didn’t do a whole lot for me on reading the listings, but the result was much more heartfelt, funny, dramatic and touching than I ever expected. It’s well worth checking out, if you can cope with the scary subject matter. It’s not really gory, but they have invested a good chunk of cash in a couple of big transformation scenes for the wolfman. What really impressed me, though, was the way it was shot and cut together. For the first time in ages watching a new British drama (particularly BBC), they have finally steered away from the ridiculous music-video manic-camera movements which blight so much UK output. Instead they trusted the really very strong performances of their lead cast and let the camera linger on them without wobble, shake or zoom. Well done that team.

Without doubt the last 7 days have been the busiest I’ve had in a very long time – pre- or post-transplant.

It’s been a whirlwind of trips here, there and everywhere that’s taken up the entire week without either K or I having time to properly draw breath.  We are both shattered.  I don’t know about her, but I feel shattered in a wonderful, sense-of-achievement kind of way.  K may just be shattered from trying to slow me down all week! (Not in a bad, I-don’t-want-you-to-have-fun kind of way, more a whoa-there-boy-you’re-new-lungs-are-only-three-months-old kind of way…)

I must apologise for the distinct quietness of the blog – I have attempted to redress the balance with a few days’ updates all at once this evening, because I feel terribly guilty for having neglected it all this week, although the truth is when I haven’t been either working or sleeping, I’ve been out and about this week.

Since Monday we’ve been to Stoke Mandeville, Oxford, Harrow, Olney, Deanshanger and Willen, not to mention the shopping trips, gym-visits, cups of tea and various odd-jobs which have taken us all over Milton Keynes.

Next week is looking like it might be mildly more sedate, although being half-term there is the chance to spend some time with my Godsons for the first time since my op, which I’m looking forward to more than just about anything I’ve had the chance to experience so far in the 13 weeks since I have my blowers swapped out for a shiny new pair.

I dearly hope the next week will bring a) more regular blog updates b) more pages completed on the new script (19 down, but none written over the weekend) and c) more firsts for the book of wonderment.

Was back at Harefield today for my first clinic flying solo. Up to now I’ve been along with Mum or Dad and maybe K in tow, too, but now I’m more mobile and – more to the point – can drive myself comfortably for an hour or more (just), I can finally let Ma and Pa go about their usual daily business. In other words, they have to stop skiving off work to run me to the hossie.

What was even better about today (barring all the medical stuff, which I’ll come to in a bit) was that after our experiment with popping into Town last week, I took myself off on the train after the morning tests and got to have lunch with a really old school mate, who’s working for a record label near Archway. It was brilliant to see him and catch up – both of us feeling really happy about our lot in life at the moment, which not only makes a change (for me, anyway) but makes for a refreshingly up-beat and happy little luncheon.

Back at the big H, I saw the main man himself for the first time in a few weeks, which apparently worried him, because you only normally get passed to him if there’s something wrong.

As it happens, there’s not – he’s even given me such a clean(ish) bill of health I don’t have to go back for four weeks(!), barring unseen complications on my part. It’s amazing to think that just 3 months post-transplant, I’m already in a place where my docs are happy for me to stay away for such a prolonged period of time.

The down-side to it is that my lung-function doesn’t appear to be following the usually predicted improvement curve that he would be expecting to see at this stage. Whether this is left-overs from the Organising Pneumonia or signs of something potentially more sinister, he’s not sure.

The big issue with the O.P. is that it can take a long time to resolve (hence the 6 weeks of high-dose oral steroids I’m on at the moment), which means it’s pretty hard to detect if there’s anything else happening. The good news is that the biopsy from my bronch a couple of weeks ago is definitely negative for any signs of rejection and there is also very little or no sign of infection, which are the two main dangers right now.

More likely than not, the plateau in my lung function is a by-product of the O.P. and as that clears up over the next few weeks, my lung function should start to creep back up towards the predicted curve that they would hope and expect to see. Going to the gym and getting more exercise, putting weight on and generally getting stronger should all help that. Since it’s a bit of a waiting game to see how it progresses, that’s why they are happy for me to head off until the steroid course finishes and they can have a proper look to see if everything’s resolved.

For the time being, he’s kept me on some oral antibiotics and added in a second immunosuppressant to try to discourage rejection should there be any lurking or even thinking about having a bit of a lurk. It does make me mildly more susceptible to colds and infections and things, but not to such a degree that it should mess with too many of my plans. The main thing is I can still go to the movies…

All in all – beyond the slight concerns over the plateau – it’s been a good day hossie-wise. In terms of independence and self-confidence, it’s been even better. For the first time since my transplant, I really feel like I’m fending for myself and reaching a level of true independence and it feels amazing. I’ve not known this kind of freedom for a really long time and boy is it good to have it back.

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. 

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.

…is the way you accelerate away from them afterwards.

And that’s exactly what I’ve done today. Yesterday was rubbish, no doubt about it – I still can’t find anything worse in the whole recovery process than feeling sick. Tired I can deal with, pain I can put up with, but nausea is something I just can’t cope with – it totally bums me out and ruins any day it pokes its rubbish little head into.

Yesterday, however, was yesterday and today is very much today – a vast improvement and significant acceleration from my little speed bump.

Today I did two things I’ve not done for ages, never mind since my op. First of all, just after 12, the legendary (and I use that word with the most careful consideration) Dazz came over and collected K and I to take us out to the cinema. For those of you who don’t know, this is the most momentous of momentous occasions for me.

Before I was ill, I would go to the cinema maybe 4-5 times a week, frequently taking in up to 8 films in any given 7 day period, some weeks watching films multiple times, other weeks just ploughing through everything that was showing in the building. As I got worse, my trips became less and less frequent and once I moved on to oxygen, I was hardly going at all and certainly would never have dared going alone without backup. My last visit to the cinema was back in the summer to see The Simpsons Movie, along with K and my brother pushing me in a wheelchair. The humiliation I felt being somewhere so familiar in such a vulnerable position all but ruined the experience for me and until my op I never set foot nor wheel inside the building again.

So today I felt a wave of the most amazing relief wash over me as I strode up to the counter to purchase my ticket for I Am Legend (which is very good, by the way, although a little scary, so if that’s not your thing then steer clear). It felt a little like returning home after a long absence – everything familiar, if the tiniest bit different in the details.

I lapped it up – the adverts, the over-priced food which I’d normally never touch, the grand, sweeping trailers on the big screen, the sheer size of the wide-screen viewing space as the feature began to roll – the sense of excitement and anticipation that I feel sitting in front of the silver screen hasn’t gone away and my passion for movies in their natural environment was instantly rekindled.

After a mesmerizing 2 hours (come to think of it, maybe the film wasn’t as good as I thought it was, maybe it’s the experience I’m savouring…) we departed the flicks for the second first of the day: Borders.

Anyone who was with me way back in the early days of 2006 will remember this entry, so knowing that one of my first “independent” trips out would be to Borders. That and the fact that I had a goodly amount of dough to spend from Christmas on books and DVDs.

As is my usual policy with vouchers I get given, I always spend them on things that I would love to have but usually wouldn’t buy for myself because they’re a little pricey. So I came away with a Making of Sin City book which I’ve been lusting after for over 2 years now and a filmmaking book I should really have on my shelves. Added to which, rather dangerously, there was a DVD sale on, so I picked up Rocky Balboa, Y Tu Mama Tambien, Sunshine, The Good German, The Science of Sleep and War of the Worlds (mostly for the extras). Perfect.

On top of all this brilliant greatness of the day, I’ve also finally started putting into place the plans for the Tresco marathon mile I’ll be running with my bro and his section of marines in April, the first step of which is my Justgiving page, which can be found at www.justgiving.com/trescomile. I’m not looking for heaps of sponsorship (just 10p a yard, in fact), but I figured that if I put myself out there raising money for charity then it wouuld keep me honest and make sure I don’t duck out at the last minute. Not that I would anyway, but, you know…

If you’d feel like passing the address on to anyone, obviously feel free. Otherwise, keep an eye here for my progress towards my biggest post-op goal so far. I’m sure they’re going to get bigger with time, but a mile seems a really long way right now. Fingers crossed.

It’s funny, you know.  I was just coming on here to quickly bash out a blog and thinking over what I’ve been up to and I thought, “it’s been a nice, lazy Sunday.”  The thing is, though, it really hasn’t.

All right, I did sleep through *almost* all of the morning (I did see some of it…), and I did watch about an hour of football/rugby during the day, too.  But my major achievement of the day has been in being active almost all the time I’ve been up.

For those of you keeping track (like me) of all the firsts I’m experiencing at the moment, there’s another to add to the blotter, that being the first walk down to the corner Tesco to get a paper – and a fitness magazine, get me.  Lovingly measured by our trusty friend Dazz, I can reliably inform you I walk all of half a mile and a bit, albeit downhill, and felt strong enough to walk back up again, too, had we not already arranged for Dazz to meet us there in his car, lest the return journey prove to be too much to handle.

I was so happy to have done it – it was a lovely walk and it showed me just how fit these new puffers of mine are.  More than that, it showed me that my leg muscles are also starting to catch up.

Not only did I manage to walk the half-mile to the shop, but I also did a 15 min session on the exercise bike this afternoon, too.  It was hard work and my legs really felt that one, but I felt great getting off it and feeling like I’d really been working myself.

On top of all my exercising, I also made a start on clearing up the study, otherwise known as the bomb-site.  Also took on cooking duties for the night and helped out with the washing up, too.

What’s really hit me about all of that, though, is not so much how tired it made me – because by the time I’d finished drying up and then wiping the kitchen down, believe mme I was cream crackered – but how quickly I recovered.

When I flopped on to the sofa with everything done for the night around 9pm, I had the familiar pain in my lower back which would come on whenever I’d done too much before.  The difference is, back then it would last the rest of the night and I’d be totally out of commission, whereas tonight, it’s barely an hour later and the pain’s gone off and I’m feeling fit enough to do anything that needs doing before bed.

It’s such a bizarre sensation to be able to recover from things quickly – to not have one simple task wipe you out for the entire day.  I LOVE IT!

Not much more I can say to that, really.

This week has without doubt been the busiest week of my life in which I’ve achieved precisely nothing.  Today I have a “day off” and I’ve spent the whole thing in my PJs desperately trying to catch up on the sleep and rest that I’m told (and feel) my body desperately needs right now.

The essence of the problem?  Because the docs were nice enough to let me out before Christmas – and before my Tac levels had sorted themselves out properly – I’ve been having to go to Harefield for blood tests to check the levels every day.  Which means from New Year’s Eve to yesterday I’ve been getting up at 7.15am every morning, traipsing the hour to Harefield for bloods and an indeterminate wait of between 15 minutes and 4-and-a-half hours before they let me home again.

In the process, I’ve had a white cell count creeping northwards, which has since settled, plus some other slightly raised (ie: dodgy) results back, which have put the docs on their guard.

I’m not really complaining, as it’s better to be commuting every day than still being resident on the ward, which I’m sure my ‘rents will agree with, even if they are the ones having to ferry me to and fro every day.  I am also well aware that plenty of people have much earlier starts and longer days than me and suffer it without moaning, but right now I just miss my sleep.  I can categorically state for the record that 7 hours sleep is not enough for a body still recovering from the rigors of having half it’s engine ripped out and hastily replaced with a new, improved model.

So I’ve been delighted to bask in the chilled relaxedness (it’s a word, I just decided) of a day with no Harefield visit.

Yesterday was my first post-Tx clinic appointment, which went really well, despite being deathly dull and involving a 4 hour wait to see Doc C.  He’s mightily impressed with my progress and all the infection markers which had been creeping up have come back down again, which is ace. The upshot is that I have a day off today, then hopefully my last day-time visit for bloods on Saturday morning, after which I should settle in to a pattern of twice weekly clinic visits, which will gradually become less over time.

What all of this to-ing and fro-ing from Harefield has meant, however, is that my time at home is taken up pretty much entirely with eating and sleeping, with barely a couple of spare hours left over to spend time with K, which has been a real drag.  We both naïvely assumed that being back at the flat would mean we’d get more time together, but it turns out that’s not so.  We are both anxious anticipating my switch to clinic rather than ward visits so that we at least get Tuesday and Wednesday to ourselves.

Still, it’s not all doom and gloom.  In fact, it’s not doom and gloom at all, really – I can’t moan when I still spend all my day thinking about the myriad things I want to and will soon be able to do with my new life.  I’m just itching to get back to work, soon as my body and my doctors (who work, naturally, in unison) allow me to.

Think of me, being poked and prodded, when you wake lazily in bed tomorrow morning.  But don’t feel sorry for me, because shortly afterwards I’ll be tearing down the corridor to escape at a speed I never imagined I’d achieve again….

It feels like it’s been an age, when in fact it’s only a little shy of 6 weeks since I was last sat here at my desk, my Mac, in my study writing up a summary of my day on the waiting list.  What a lot has changed in those six weeks – what a remarkable six weeks it’s been.

I keep having to catch myself from protesting at how long it’s taken me to get back here, or to stop myself from trying to do things that I’m not supposed to do yet because to me it feels like months that I’ve been away and out of the loop.  It’s been fantastic to receive all of your messages, cards and comments, but they are about the only things I’ve been collecting from my “life”.  I now have 6 weeks of unopened mail to go through (except Christmas cards, which K opened – funny how she avoided the bills…) and an inbox which has just downloaded the 420 mails I’ve received since my transplant and that’s after K had a bit of a clearout not too long ago.

It’s so funny to see myself moving freely, doing things around the house (I’ve been cleaning this evening!) and generally getting on with things in a totally normal and nonchalant manner.  Already things are becoming second nature to me and I don’t think twice about them until I’ve done them and I sit with time to reflect,  or until someone points out just what I’ve done.

I’ve definitely tired myself out today, with a trip to Harefield this morning for bloods, a good, brisk 10 minute walk along the lakeshore this afternoon and then an hour’s manic unpacking/cleaning when I got home tonight, but it feels wonderful to have heavy eyelids and not heavy lungs.

I must add, for those of you thinking anything was amiss – the cleaning I was doing was only because we swapped our bins over and I had to clean off the old one to be used as our recycling bin as the new one is more hygienic for kitchen waste.  K has actually, with the help of our great friend Dazz, completely overhauled the flat and scrubbed it top-to-bottom without missing a single nook or cranny anywhere at all.  All traces of my former life have been whisked out – no Neve, no concentrator, no oxygen cylinders – and the place is positively sparkling.  I can’t explain properly just how hard they’ve worked to make sure it’s ready and bug-free for me to come back to.

The slight downer on the day today (and it is only very slight) is that my Tac level has gone up to 20 again (they’re aiming for 10, remember), and that’s only after taking 3mg, so goodness knows what my body’s up to.  I’ll be off for more bloods in the morning and should get chance to chat to my Tx team about what’s going on and also about the scar pain.  The trouble with going to hospital on a Sunday is that it’s only the weekend cover who are on and you can’t guarantee that they’ll be the Tx team (which they weren’t today) so it’s hard to get things sorted.  Tomorrow should be a different pot of pike, though, and I’m sure we’ll get somewhere with it all.

My walk this afternoon was great – again an amazing experience to get myself out of breath and feel it was my legs that were going to give up before my chest.  In fact, after doing the physio’s exercises yesterday, I couldn’t half feel it in my calves today during my walk.  Note to self: don’t forget to stretch!

New Year’s eve tomorrow and I’m looking forward to seeing in 2008 with a sense of optimism and possibility rather than worrying about what’s just around the corner for me.  Hope you and yours all have a great one and if I don’t blog tomorrow, catch you next year!

24 hours later and I’m all tucked up home again.  My tac levels are all over the place and the docs can’t really work out why, but on the basis that pre-Christmas they let me go if I came back every day for bloods to keep an eye on them, they couldn’t see any more reason to keep me in if they were only going to be doing the same thing there and have me taking up precious bedspace and resources for the rest of the time.

I’m not about to start arguing with their logic.

I guess, after the last two blog-hijackers entries, I can hardly say I’ve had a rubbish Christmas or that I spolied it for everyone, since that’s already been disproved.  What I can say is that it’s no fun spending Christmas day feeling like you’re about to hurl, nor is it a bundle of laughs spending Boxing Day actually hurling and in hospital.

That said, it was wonderful to be at home and have the chance to celebrate, as much as I could, with my nearest and dearest, even if it did feel somewhat tainted by sickness.  I was incredibly lucky with the tremendous gifts I recieved from family and friends and I shall enjoy getting out and spending the bundle of vouchers I received as soon as my docs let me out in puclic places.

There’s not a great deal for me to add – being in hospital, particularly for one night when you’re mostly concentrating on not throwing up – doesn’t give you a great deal of war stories to relate.  The team of docs and nurses were fab as usual – the nurses particularly making me feel right at home again.  The one advantage of spending a month on the same ward is that you do get to know the staff particularly well, and it feels like something of a bittersweet homecoming when you’re entrusted to their care again.

So, Merry Christmas again, and apologies to all those of you I didn’t reply to on the day with emails and text messages, but I was rather preoccupied with either celebrating as best I could or sleeping the sickness off.

Here’s to a better and more stable New Year’s celebration and to an ever strong me off into 2008.