Archives: Improvement

Last night I sat at my computer, whiling away the time until K had finished in the bathroom before heading to bed and I started reading back through my old blogs. I had to moderate a spam message which had attached itself to a posting in mid-December, which lead me right back into the heart of the post-transplant ups-and-downs and I felt a sudden urge to go back to the start and read all through the Transplant from the day of the call.

I’ve read bits and pieces of K’s postings from while I was on the ward and, of course, all of the messages that were left for me while I was going through it. It’s still weird, though, reading back through such thorough descriptions of all the various events which went on, particularly in the first couple of weeks, which are still pretty much a blur to me, although reading the blogs I realise I actually haven’t forgotten as much as I thought I had.

That first month seems a world away from where I sit here, but Sunday marked the 5 month point since I had my op – it’s amazing how quickly the world moves.

Today has been K’s day – she finally finished her college course, which I rather unhelpfully got in the way of before Christmas – handing in her dissertation and doing a presentation to her main tutor. He has told her that she’s already passed with the highest grade possible (Level 3) without even having handed her dissertation in and that her presentation was the best and most professional he’s ever received for a student.

Now, we all know that K is wonderful, amazing, intelligent and a whole load of other incredibly positive adjectives as well, but it often passes her by completely. Having someone who actually matters (as opposed to… you know… me) tell it to her, and to have a piece of paper telling her it’s true, seems to have made the world of difference as for at least a few hours today, she actually believed it herself.

After picking her up from her presentation, all bouncing, bubbly and beautiful, we headed to the flicks to catch Flashbacks of a Fool, the new Daniel Craig film. No one can say that since being passed the mantel of Bond that Craig’s left himself open to type-casting. He’s working incredibly hard to make sure that all the time he’s contracted as Bond, he’s not letting his career slide, turning in some great performances in smaller, more independent fair like this. And he is excellent in it, let me assure you. There’s a scene towards the end of the film where he confronts/approaches/meets Claire Forlani’s character (something of a blast from his past) in a graveyard and his eyes are simply mesmerizing.

The film itself is a cleverly-structured deconstruction of the life of a Hollywood mega-star for whom bad news forces him to remember a time he’s spent a lifetime trying to escape from. What could be scene as a somewhat hokey narrative device become an interesting and plausible plot device by being plastered across the film’s title. Knowing you’re going to be dealing with flashbacks restrains you from dismissing them as is so common in modern movie-making. What’s more, they’re actually accomplished in a much more deft and sensible manner than many films who aren’t so up-front about their usage.

The cast is uniformly excellent, with a couple of exceptions who don’t really need mentioning as the don’t really spoil the film. The flashback sequence is perhaps a little on the slow side, perhaps a touch too long, but it’s impact is undeniable and the Daniel Craig bookends so riveting and absorbing you forgive the sluggishness of the middle portion.

It’s undoubtedly one to check out, although it’s not the most happy, uplifting film in the world. Precise and carefully, considerately put together, but heart-warming it is not. Check it out, if you don’t mind taking a tissue or two.

… I was flat on my back in intensive care having just had my rubbish old blowers swapped out for a pair of shiney new ones.  And what a corking pair they’ve turned out to be, too.  Already I’m off galavanting around the country meeting new people, doing new things, catching up on the life I missed out on for most of the last 12 months and more before my op.

I’m reminded today of how special a gift my new lungs are – and just how lucky I am – by the simple horrible day a dear friend of mine has had.  A CF-sufferer like me, she’s been on the Tx list quite a while now (rather embarrassingly I don’t know how long), but last night she got the call she’d been waiting for.  After the usual battery of tests, they sent her down to theatre and put her under.  They even got as far as beginning the surgery.  And then something – no one knows quite what – happened with the new lungs and the whole thing was called off.

Now, I had my fair share of false alarms in my time on the list, but this goes WAY beyond anything I evere had to deal with.  There’s disappointment and then there’s this – it’s so far beyond anything I can imagine I can’t even find the right word to describe it.  I feel devastated and it’s not even me it’s happened to.  So for those of you who are so inclined, Scotland could do with some of your happy thoughts right now.

As for me, well I seem to be generating my own happy thoughts for the time being.  So busy have I been in generating the happy thoughts, I’m now being berated on all sides for the lack of updates on the blog.  I have to admit, rather sheepishly, that I hadn’t even realised it had been a full week since my last update.

So I’m now going to diligently recount the last few days for all those curious people out there – keep your eyes on the earlier dates for the week (yes, I can back-date my entries – a fact which appears to have eluded some of my fair readers over the last couple of weeks…) to see what I was getting up to, which will form some sort of very lame defence of my lack of bloggage.

Thoughts and prayers to Scotland, please – Heaven knows she needs them.

Up far too early this morning to get off to Harefield for my first trip there in a month. Slipped into clinic still dripping from the torrent of water being unleashed from the heavens in the short walk between the car park and the main building, to be greeted by a very quiet scene after an apparently large number of cancellations. All the better for me, though, because the fewer people in clinic the earlier I get away.

Went through all the usual rigmarole and emerged the other side pretty much unscathed – weight’s up a kilo, SATs looking pretty stable, temperature good, lung function moving up smoothly.

K had the day off work, so took it upon herself to take us both shopping in Watford thanks to our 3-hour hiatus afford by the usual clinic practices of waiting for results before seeing the docs. Somehow, we managed to walk the entire length and breadth of the Harlequin Centre in the middle of Watford (albeit mostly looking for food) and come away without spending any money whatsoever and a brand new Blackberry Curve for me. I was impressed.

Proceeded to return to H-base and got into see the great MC pretty snappily. He was perfectly happy with my progress, which was something of a relief as last time I’d seen him he was mildly concerned about my slight plateau in lung-function and indicated that if it didn’t improve I’d have to go back in for another Bronch et al. My issue was I didn’t know how much he wanted it to have improved by in order to skip that part of the plan. Turns out, it just needed to be going steadily the right way, which indeed it was. More than that, some of the more obscure numbers (rather than the simple FEV1/FVC numbers we are given) had apprently jumped further than he’d have looked for. So win-win really.

Also managed to catch up with Emily briefly after we missed each other in the morning thanks to her having a bit of an “off” moment. Really weirdly, having not seen each other for months and months and months (since I was in hospital after my initial op), we’re now down to see each other twice in a week as we have a Trustees meeting for Live Life Then Give Life on Friday. Funny how the world works.

Managed to escape Harefield by just after 3, which had us home and dry by 5 after a brief Tesco-and-petrol detour on the way back. After half-an-hour or so of sitting doing nothing, itchy feet took over and we settled on a night out at the flicks to catch The Other Boleyn Girl.

Although on the surface – and in large parts – it’s a very ordinary (if star-studded) costume-drama/book adaptation covering the lives and loves (well, love – Henry VIII) of both Anne and the lesser-known Mary Boleyn, there are moments of brilliance smattered throughout.

It’s testament to the two leading ladies, Natalie Portman as the Queen-to-be-beheaded and Scarlett Johansson as her younger, less fortunate(!) sister, that one still feels fairly hefty pangs of emotion at the denoument that you’re well aware of before the film even starts.

In the hands of a lesser pairing, Anne’s betrayal of her sister and her semi-sadistic schemeing to win the heart of the King and the throne she believes to be her right would be too much for an audience to forgive. And while I can’t say I went the whole hog to total forgiveness, to imbue such an innately unsympathetic character with enough humanity to carry such weight on her death is remarkable. But it’s not solely down to Portman’s work – without Johansson’s pain, anguish and subsequent forgiveness and the enormous risks taken at the end being wrote so large and ingrained so deeply within her performance, the audience wouldn’t be allowed the access to the emotions we’re lead to feel.

It’s not a flawless film, by any means – there’s a few stilted performances and even some of the big guns involved take a while to hit their stride, but it deals deftly with the passage of time and there are some emotional beats within the story that the film nails as perfectly as any movie I’ve seen this year. Worth a look if historical and/or costume dramas are your kind of thing – not one to be immediately dismissed if they’re not.

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.

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.