Archives: Transplant

Who’d have thought I’d be back to studying, eh?

Not 24 hours after my mammoth meeting on the new show, I realised that if I was going into rehearsals on Wednesday, I’d sure as heck better have done some work on the script I’m tackling.

It wasn’t till I sat down to piece together the sections of text from Hamlet and Tom Stoppard’s Rosencrantz and Guildenstern Are Dead that I realised it was going to be impossible to work from copies of the script I had, so I’d have to type it all out fresh for the cast to use.

Laborious as it was, I’m actually grateful for the need to take the long way round, because it took me through both texts line-by-line, which got me much closer to them than I would have been if I’d just have given them a cursory glance through.

The basic idea of what I’m trying to do is use two of Shakespeare’s scenes with Hamlet, Rosencrantz and Guildenstern (or Ros and Guil, as their mates – well, my type-worn fingers – call them) to book-end my favourite section of R&GAD involving a rapid-fire word game which is not only fun to watch, but also to perform and direct.  The contrast between the language and the style of performance in the two different parts (ancient and modern) is a great opportunity for the actors to really explore and play with the text and their characters.

What I didn’t count on, wading through the text as I typed it out, was just how much extra work I’d created for myself by going back to Shakespeare’s original.  Foolishly, having studied it for A-Level, I was hugely confident of my grasp of the material.  But looking at it again I realised that although I still had a good hold of the sense of it, there were a hundred questions that leapt out at me from the verse which, as an actor, I would immediately have thrown at the director.

Being the director, that means I have to know the answer.  Of course, it’s not as simple as just throwing out an answer – I prefer, in rehearsals, to let the actors reach their own decisions and conclusions about what they’re doing – but in order to keep them on the right track and not flailing off in random directions which take us round in circles, I needed to swat up on my ancient English and get to grips with Will’s words.

Remarkably, I slipped back into my studying patterns without so much as a hiccup.  In fact, I think I may have been better at it now than I was when I was studying it to be tested on.  Whether that’s a reflection on my abilities, or motivation, as a student, or on the problems with teaching Shakespeare in an English class I’m not quite sure.

Whatever the result and however well it goes in rehearsals, there is no doubt that getting back into creative endevours – and practical ones at that – has refreshed my mind and my imagination and pushed my motivation to stay fit, healthy and able to work even harder than it was before.

More than anything else right now, I want to be able to see this through to the end.  Ok, if I get my transplant call, I might just see fit to relinquish my role (provided, of course, I get comps to the show…), but beyond that, I don’t want anything else to get in the way of me being able to do the thing that’s been so missing from my life.

So it’s double-physio, extra drinks (of the build-up kind, not the alcoholic kind) and plenty of rest throughout the day so that I can make the very most of the opportunity afforded me.

And if you haven’t bought your tickets yet – why not!?!?!

EMILY UPDATE:

As updated on Friday, Emily came through the surgery well and is currently in intensive care.  They made an attempt to wean her off her ventilator today, but she didn’t take to it too well and has been sedated again.  This isn’t a major issue, as it is quite common for the de-ventilation (as it were) to take a little while, what with the mixture of sedation, pain meds and new cocktails of anti-rejection drugs.  She has become slightly more awake and alert at points and is showing good signs of her old bubbly personality in flashes, so things are looking cautiously optimistic at the moment.

As for me, well, the last two days have been pretty up and down.

One of the weirdest things at the moment is how other people seem to think that I’d be really adversely affected by Em’s transplant – perhaps expecting me to be jealous or angry, the old “why not me?” chestnut.

But the truth is, I don’t feel anything like that at all.  I’m completely overwhelmed with joy for Em and her family and devoted boyfriend – I couldn’t be happier for them all, and especially seeing such a close friend going through what we’ve both been hoping for for the last two years.  It feels odd, because there’s a part of me that thinks I should be feeling some pangs of jealousy or upset, but it just isn’t there.

It has made me think a lot more about my own transplant, but actually in a much more positive light.  I have to confess that I have had moments, particularly over the last few weeks leading up to Christmas, where I have been doubting my conviction that this will come for me, and I still don’t like to hear people talk about it with such certainty in their voices. 

But I know that Em has been through patches like me as well – particularly in the summer when she had an exceptionally bad spell and was touch-and-go for a while, and we spoke about it afterwards.  And I know that although she had her doubts, she never lost faith and never stopped fighting, right up to her call.  She’s set a kind of positive-thinking example to me and perked up not only my enthusiasm, but also my previously rigid belief that this will come for me too.

Secretly, I also have to admit I’m quite pleased she got in there first, because she’ll now be on hand to help talk me through all the relevant stages of post-op recuperation as I come across them!

The last few days have been a bit rubbish for me, though, since I’ve started to feel really sick after my evening meal for the last three nights in a row now and the pattern is becoming a little disturbing.

The first night, on Friday, I had a horrible moment of thinking I was coming down with the same virus that hit K on Christmas day and that has slowly been working its way through her family.  But so far I’ve not actually been sick.

Another theory that struck me yesterday was that, having spent two afternoons back at the flat trying to get it ship-shape before we aim to move back in over the next couple of weeks, all the dust and stuff we’d been kicking up has upset my chest and made me more productive, which in turn I’ve been coughing up and swallowing a lot – causing not-too-goodness in my stomach.

Although that seemed a plausible explanation yesterday, it seems less so today, when I’ve done nothing but chill out at my ‘rents.  And it also doesn’t explain why it’s only in the evenings, either.

It’s not too bad, just annoying that I can’t seem to eat in the evenings without feeling like I’m going to hurl for a couple of hours afterwards.  It goes off slowly over the course of the evening, but it’s not very pleasant to have to put up with.

Still, things could be worse and my chest is still doing very well a week into the New Year.  I’m waking up every morning with lots of energy and get-up-and-go and I’m hopeful of a successful move back to the flat in the coming week or so, which will be lovely not just for K and me, but doubtless for Mum and Dad, too.

So next week is a chance to start focusing back on work, with the start of a new term at MKT and a show to build towards, as well as time to start turning my attention to the next issue of CF Talk.  And then, of course, there’s all my writing projects, too….

I’ve just this minute had a text message from a friend (the other half of the Live Life Then Give Life team) to say that Em has gone down to theatre for her transplant at Harefield.

Words can truly not express what I’m feeling at the moment – I’ve been through a lot with Emily over the last 12-18 months and we’ve both come across new challenges around the same time as each other (although I have to say I’ve been the lucky one and had things an awful lot easier).

Almost precisely two years ago, Em was told she had a year left to live – she’s been close to losing her battle on at least two occasions but has never given up fighting and believing that her Tx would come.

And now it has and I’m delirious for her – it’s just unbelievable.

But it’s not all plain sailing from here – she’s going to have a lot more fighting to do over the coming few days and weeks to get through and out the other side to where she can finally enjoy the rush of fresh air into her new lungs. 

So I’ll ask all of you out there reading this, whether it’s tonight, tomorrow morning or any time in the next few days to say a prayer or two for her and help her in her fight.

Em, you’re a legend and I couldn’t be happier!

UPDATE:

I’ve been told that Emily has come through surgery with apparent flying colours (Em does everything with flying colours.  It’s not worth doing if it’s not colourful, mainly pink!).

She’s now out and in intensive care – her family have seen her and she’s doing well although obviously she’s still critical at this stage.  Please keep praying and keep her strong to fight through and come out the other side.

I think I might have cracked it.  Not in a bad, going-to-need-to-replace-it kind of way, in an it’s-about-time-you-silly-arse kind of way.

First of all, big Happy New Year to one and all – hope you had a good night’s celebrations and woke up later on the 1st without too much of a fuzzy head and swirly stomach.  Being the paragon of virtue that I am, I was enjoyable tee-total (or is that tea-total) all night and felt super when I woke up.  So bleh to you! (I don’t know how you spell the noise you make when you stick your tongue out at someone…)

But most excitingly, I’ve managed to get through all of the weekend’s festivities and back into normal life with no kind of a chest-related hangover whatsoever – how brilliant is that?

Not only did I save up enough energy on the 31st to have a really good night with S&S and the big C at the Lodge, but I lasted the course of a day with my Godson and family yesterday too.

Sunday night was great fun – just the 5 of us chilling out, chatting, laughing and watching the Hootenanny on the telly.  I love the Hootenanny, mostly just because it has a totally brilliant name.  Hootenanny has to be one of the best words in the whole language.  And it is totally fitting for some kind of party!

Come midnight we all hugged and danced (some more energetically than others) and decided we were knackered and ran away to bed.

Monday was another cracking day of fun and frolics with my Godson, his Mum and Dad and bro.  We played Uno and I lost by a lot, we played Game of Life and I lost by a little less, then after our second meal of the day – don’t you just love those days when you have a huge roast dinner and then come back later in the afternoon to finish off the leftovers and clear out the fridge with some lovely crusty bread and pickles and cheese and other wonderful delights? – we played Game of Life again and I won.  I didn’t mean to, I sort of did it by accident.

The whole thing was interspersed with an hour’s break in the middle when the two Dad’s took the young’uns off for a walk around the lake and I laid on the bed with Neve strapped on resting myself up for the 2ns half of the day.  It worked brilliantly – just as I was beginning to flag, my mini-break, semi-nap set me up for the rest of the day perfectly.

The best part of the whole weekend, though, without a doubt (aside from all the great bits) was waking up this morning feel fresh, energised and ready to tackle the day.  Not a single sentence of moany-ness from my chest and not a moment of complaint throughout the day.

I’m so happy it’s really rather silly and I’m aware of how fragile it all can be, but I can’t think of a better way to start the New Year than to realise that I’ve worked out the limits of my ever-changing body.

I know I tend to push myself too hard and usually too fast, but it’s fantastic to know where I can push myself to and to be able to recognise when I need to stop, take a breath or three and stop myself being silly.

Those of you who’ve been with me from the start will know that this whole escapade began with me searching for an understanding of the boundaries that were newly rearranged around my ever-more-protesting blowers, and to finally find something of an answer, or at least a vague level of comprehension, feels wonderful.

So now it’s time to turn my attention to more long-term and practical goals, and see what I can’t achieve with my year before Harefield get on the phone to offer me my part-exchange.

Anyone got anything they need me to do that involves sitting at a desk and preferably being creative, you know where to find me.

For now, I’m off to get my 10 hours sleep to make sure tomorrow goes just as well.

Happy New Year everyone, bring on the next challenge!

Today’s been a really good day for me and I’m really pleased with myself for it, too. 

Yesterday, apart from slumming it on the sofa trying to urge my chest pains to go away, I spent the afternoon writing another article for the Guardian’s Comment is Free site – this time about Transplantation.

Em and Em, the partners in crime behind Live Life Then Give Life (from whom you should all have bought a T-shirt, not to mention signed up to the Organ Donor Register), organised another big publicity push for Christmas, which I sadly missed out on because of all my recent email hiccups and account confusions.

So, in order to still be doing my part, I mentioned the campaign to the guy who’d contacted me about writing my previous article to see if he was interested.  He said he was, so I spent the afternoon writing up a general summary of the status of transplant in the country and the various different systems around the world.

What I’m most pleased about it that he particularly wanted to stir up a bit of debate about the subject and if you go and check out the article online (here), you’ll find a lively exchange in the comments section underneath, which is really good to see.  Except maybe for the comment about my hair…

After being in the study working all afternoon, my chest was protesting a little again so I stayed on the sofa watching a movie in the evening and headed to bed at a sensible time. 

Better than anything was the fact that I got myself comfortable (not always possible with chest pains) and slept solidly through until 11am this morning – 12 hours sleep being something I’ve not enjoyed for as long as I can remember.  It was blissful to wake up and discover I’d been out like a light all night.  And it’s really recharging, too.

What I’m most pleased with today, though, is that I’ve stayed true to my promise to chill for the next few days before Christmas and have done very little again today.  I’ve been massively helped by the fact that I’ve had friends round to see me most of the day, which is good for sitting on the sofa chatting and not having to move or do other things.

But I’ve also been really good at doing physio sessions and stopping myself from “popping out” or sitting in the study at the computer for too long, or at the table in the kitchen reading the paper – all of which have a tendency to put extra strain on my chest and induce pain here and there.

Fingers crossed, I’ll be able to carry my discipline over to tomorrow, when I’ve got a little more planned, but am hoping that when I’m not out of the house, I’ll either be in bed or on the sofa doing nothing at all.  And K’s back from her parents’ tomorrow afternoon, so she’ll be around to police me.

I’m clearly starting to reach sensible fitness levels as for the first time over the weekend, my mind has started to whir with possibilities of things I could be doing, or would like to do in the New Year.

Sadly, most of them are all things that will be beyond my reach before my Tx, but I suppose there’s no problem having some kind of roughly sketched plan for the future, however far away it may be.

At times like these, I find the difficult thing is to focus my mind on to one thing in particular and get something done.

Right now, for example, would be a perfect time to knuckle down and get some really good writing done.  Perhaps one of the new play ideas which have been circling my head – written up into draft form, or even just solidified in story terms.  Or perhaps taking an opportunity to look back over one of my few first-draft projects and hone them slightly.

Inevitably, though, I find myself enjoying my imagined new-life projects far too much and taking myself off into my fantasy new world while achieving nothing and taking no steps forward in the real world.

It seems silly, really, to become too swept up in the details and nitty gritty of the grand schemes I have laid out post-Tx when right now, planning whether or not I’m well enough to make a trip to Borders to finish the last of my Christmas shopping or treat myself to some new reading material.

What I need is some focus, and that’s what I’m heroically lacking in.  I say “heroically” as I’m blaming it on my brain as a way of coping with ignoring all the negative stuff that’s inevitably swirling around at celebration times and the turn of a New Year.

Yes, it helps to bluff oneself with the concept that you’re looking after yourself in the long run, and right now while you’re recovering physically, any kind of mental exertion is good, whether its practical or dream-based.  At least that’s my story and I’m sticking to it.

There’s also the question of the “holiday season” as some loathsome people are wont to call it, which is arriving like a speeding train and is just as likely to derail any well-laid plans anyway, so it’s yet another excuse for butt-sitting and job avoidance.

Indeed, it seems fairly clear sitting here bashing away at the computer during the half-time break of the Sheffield Utd vs. Aston Villa game on the TV that the blog is just now as much a procrastination tool as anything else.

Or maybe – just maybe – forcing myself to sit and write my little progress notes of an evening is going to finally instill a little bit of discipline into my daily routine and lead me down the path of finally focused achievement.

Any takers?

It’s certainly been an interesting last 12hours.

Following the announcement last night that Gordon Brown’s 4-month old son, Fraser, has been diagnosed with Cystic Fibrosis, I’ve already done three breakfast radio show interviews – 2 on the phone for BBC 3 Counties Radio in Luton (Beds/Herts) and BBC Radio Berkshire, and one in the studio for BBC 3 Counties Radio in Bucks, which happens to be just up the road from my Mum and Dad’s house where I’m holed up at the moment.

I first heard the news when Em phoned me last night and told me about it.  It must be horribly upsetting for the family, especially having it “outed” as it appears to have been by a Sun scoop.  But they seem to be dealing with it in the best possible way, staying upbeat and positive and looking towards the future with hope.

And there’s no reason for them not to.  With Fraser being diagnosed at birth and going straight onto a regime of necessary treatment, there’s no reason to think that he should be capable of having a really good stab at a normal life.  With the Gene Therapy trials just around the corner, babies being born with CF stand an infinitely better chance of leading a full and happy life than ever before.

Support for the Brown’s from the CF community has been over-whelming, with the message boards on the CF Trust inundated with parent’s and PWCF leaving messages.

I was woken this morning at 6.45am by a call on my mobile, which is always on because of the possibility of a transplant call, and a researcher from the BBC asking if I’d do a phoner for them at 7am.  Bizarrely, I agreed and while I was on the phone to the studio giving them my best “CF’s rubbish but the Brown’s needn’t be all blue” I had a beeping in my ear from the other branch of 3 counties and a voice-mail left to call them.

No sooner had I come off air from my first interview (where I’d actually managed to leave the presenter speechless – go me!) than I was arranging an 8am studio visit for the MK branch of the breakfast show, whilst getting a call off a producer with Berkshire who is engaged to the first researcher I’d spoken to who had obviously relayed my performance just minutes earlier.

60 seconds later I was doing my second phoner of the morning and within 5 minutes was back off the phone, lying in bed and drawing up my morning dose of IVs.  Having administered them, I got myself up out of bed and dressed as quickly as my puffy little lungs would allow and jumped in the car with mum to trundle up the road to the Bucks 3 Counties Studio, where Martin Coote does his breakfast show that I’ve visited twice before.

This time I dragged Mum in with me and she gave a great account from a parent’s perspective, before I filled Martin in on my current situation and even managed to get a plug for the Live Life Then Give Life campaign in, which was a bonus!

I was back home by 8.30am having pretty much not stopped since the first phone call this morning.  I’m now starting to feel the early morning slightly, so it’s off to the sofa for me and – maybe – a bit of extra shut eye.

23.01, Sunday 19 Nov

K brings me the phone, which she’s just answered, “It’s Nicky, from Harefield.”

“How are you feeling, Oli?”

“Okay.” Shitting myself.

“Any problems that you know of?”

“Nothing new.” My heart’s just stopped.

“We have a match for you on paper. It’s early in the process at the moment and our retrieval team is on the way there now, but we’d like to get you in. It might be a wild goose chase.”

“Okay.” Okay.

Surprisingly calmly (this being my second call from Harefield since I was listed 18 months ago), I gather my things and K gets un-ready for bed. 20 minutes later, we’re at Mum and Dad’s and squeezing into Mum’s Polo, my bro having borrowed my dad’s nice spacious estate for the week to move his stuff out of his barracks in Canterbury.

It struck me as we sailed down the empty, wind-swept, rainy M1 towards London that this may prove to be the most short-lived chronicle of a run-up to transplant in the history of the blogosphere. Wouldn’t that be upsetting?

We arrived at the hospital about half twelve and Nicky, the coordinator for the night, told me that the retrieval process was just starting and that there would be no news till after 3-3.30am.

The ever-efficient team then set about the myriad tests and odd-jobs the docs and nurses have to do pre-op. In no particular order (it’s somewhat of a blur, to be honest) I had 14 vials of blood taken, a venflon inserted (small cannula in the arm for giving drugs through), height, weight, temperature, blood pressure and O2 sats checked, a chest X-ray, and ECG (heart-monitor thing) and a few pieces of paperwork about me to fill in.

The most wonderful part of the exercise was without doubt the full-body shave and alcohol shower. Wonderful little clippers provided by the NHS did for what little body hair I had above the waist, and there were certain other bits of delicate work to do, too. Followed immediately by a shower using a full-body alcohol scrub like soap. And yes, if you’ve just sucked the air in through gritted teeth, that’s exactly what I did, too. Nice.

Prepped and gowned by 2.30am, we set about waiting. And waiting. It all seems to have passed in a blur now, but it was interminable at the time. As the clock ticked past 4am, I began slowly to unravel from my tightly-wound coil of security and self-knowledge.

Bizarrely, what starting playing on my mind wasn’t the fear of the op itself, nor the fact that I might not make it through. Instead, my mind fixated on what it would be like when I came around and I was enveloped in a fear of claustrophobia should I happen to come around while still attached to the ventilator afterwards.

The thing about anaesthetics and post-operative sedation is that it tends to meddle with your memory. So while you may be fully awake and alert and responsive, you may not actually remember it afterwards. Not remembering means that, to all intense and purposes, to you it didn’t happen. So I became somewhat obsessed with wanting to know at what point I would “wake up” – when my awareness post-operatively would kick in.

It wasn’t until 4.30am that Nicky came back to us, by now huddling close together in the room with everyone trying to seep strength into me. The retrieval surgeons had been in and looked and while, on paper, the lungs looked good, on closer inspection the team weren’t happy with what they saw and decided to abort the retrieval process.

It was a no-go.

It’s hard to describe the deflation of news like that – the total release of tension and relief mixed with bitter disappointment mixed with adrenaline-fuelled exhaustion.

Venflon removed, gown cast off, re-dressed in street clothes, I shuffled my way into a chair for a ride down to the car and the journey home. Arriving back at the flat at 6am, I flopped onto the sofa and did my morning dose of IVs which were now due, then slipped into bed, slid onto my NIV mask and promptly fell asleep.

Looking back on the experience today, after a totally lost morning and an afternoon of bleary-eyed chilling-out, it has been a lot easier to cope with than my first false alarm. All the way through the process I was a lot calmer than I was last time, largely helped y the fact that there were no surprises, I knew the drill and knew what to expect. The deflation, while marked, isn’t anywhere near comparable to last time and the roller-coaster of emotions is much more sedate. Gulliver’s Land compared to Alton Towers, tea-cups to waltzers.

I was interested by my reaction and how my fear manifested itself. the post-operative period has never really bothered me before, but that’s what my mind chose to focus on last night. With hindsight, it’s clear that it was merely the way my brain dealt with the general fear of the unknown, latching on to one element and amplifying it to take control and form a focal-point.

I spoke to Dad this afternoon and he’s already started a book on how many times from now we hear, “Third time lucky,” from people. I’m confidently predicting double-figures.

The best thing to happen today, however, is nothing to do with CF, Transplant, false-alarms or anything else. Suzanne, the practitioner and workshop-leader I work with at MK came over for a cuppa with her hubby this afternoon on their way home from Costco, the bulk-by warehouse and brought with them what can only be described as a VAT of Flumps, the little marshmallow shapes. I haven’t seen proper, official, perfect little flumps for YEARS and I’ve been searching high and low. And now, I’ve got a vat full of them!

It may have been a roller-coaster day, but my flumps will keep me smiling through it….!

Blogs. There’s millions of ’em. The world has blogs coming out of it’s ears. The world has blogs coming out of pretty much every orifice. So why am I adding to the over-crowded madness and what’s this all about?

I’m here for me, mostly, but I’m also here in the vain hope that someone, somewhere, someday may find some useful knowledge or comfort in the words that will follow and the journey I’m embarking on.

18 months ago, in June 2005, I elected to go onto the active transplant list for a double-lung transplant. I have Cystic Fibrosis and over the course of a few years I had slowly declined to the point where my specialist team at the Churchill Hospital in Oxford arrived at the conclusion that I was now eligible for transplant.

I say “eligible” because transplant is a very odd thing: to be considered for the list you need to walk a very fine line between being ill enough to warrant a) taking the chance of a new life away from someone else on the waiting list and b) taking the risk that such a massive surgical procedure places on your already frail body, but at the same time being well enough that, complications aside, your body will have enough in reserve to withstand the rigours of surgery.

Since I went on the list in the middle of last year, my health has been stable and I’ve been relatively well. With CF, things are all relative.

In September this year, however, things took a turn for the worse and I’m now facing a countdown to the end of a race which is going to end on one of two sides of a coin. Only 50% of people who go on the transplant list actually receive the organs they require to go on and live a full and happy life. The other 50% die while they wait.

Throughout my life coping with the ups and downs of CF – and believe you me they are myriad – I’ve learnt one thing above all others. If you don’t laugh, you cry. Hence the title of this blog.

Whatever happens over the coming months and years, wherever my health takes me and whatever else life throws at me, this blog will be here not only to document the process, but also to remind me when the going gets to its very toughest, that the world is really a very funny place and you have to keep on smiling, because the other options are too dark to think of.

My intention in this blog is to chart my day-to-day progress, both physically and mentally, as I race the clock towards it’s ultimate conclusion – one way or the other.

I’m not (quite) vain enough to think that I’m going to change the world with a little diary-cum-biography-cum-progress report, but as with all things that I do, both for the Cystic Fibrosis Trust and in my life in general, if it makes a difference to just one person and helps them get through a tough time, helps them realise they are not alone or just shows them that life’s not always so bad after all, then it will be worth it.

Whatever you do in life, always have courage in your convictions – throw yourself into it with all your energy and strive every day to be the best that you can be. You truly never know what’s around the corner and regrets in life are the hardest thing to deal with when you face a ticking clock.