Archives: Family

Followers of this blog will be familiar with the various ups and down I’ve experienced over the last months since I began writing, and friends and family of mine know about them from much before then, to varying degrees. So when I say that this last Sunday gone marks possibly the lowest point I can remember, it isn’t a remark I make lightly.

More than ever, this entry in the blog is a personal one – one for me to look back on in the weeks and months to come as I look back over the trials and forward to what may lie ahead and to be able to see that I’ve come through worse than I’m going through.

Smile through it was designed as a pithy phrase to help me remember that when it comes down to it, laughter really is the best medicine, and that taking the time to remember the levity and vibrance that life gives us can turn a perpective upside down. Through most of the things I’ve been through in my life it’s an ability to laugh at myself and situation that’s really pulled me through, and having family and friends who share my often bleak and black sense of the humourous that helps beyond words.

But sometimes, even though part of you knows that you can fix it all with a grin and a giggle, your body and mind won’t let a smile cross your lips; not the glimmer of a smirk or a corner of the mouth upturned.

This is how I found myself on Sunday night.

Sitting on the edge of the bed at half-past nine, four days after coming out of hospital to renewed hope and the excitement of a new car, I found myself fighting for breath with a new sensation of pain and exhaustion ripping through my chest and as I stared almost vacantly at the floor, I felt an overwhelming desire to give up.

It’s hard to reconcile the feelings of joy I had at escaping the confines of the hospital last Wednesday with the hurried turnaround once I reached home. Aware as I was of the fact that I was by no means fully recovered, I was anxious to get back to something – anything – which even vaguely resembled normality: being able to choose what time I did my drugs, being able to sleep for hours during the day if I so wished, not having treatment times dictated to me by staff with a dozen other patients to see.

What I discovered, however, is that home can feel like more of a prison than any hospital ward. In the same way that the four walls of my hospital room started to feel reassuring and safe, home began to feel like a well-decorated prison cell, with a world of wonders on the outside.

I’m exaggerating, I’m sure – home is never really a prison – but as the weather turned warmer and sunnier, I just wanted to be outside. Coupled with our recent automobile acquisition, my sense of adventure began to take over and K and I began to explore the bounds of my stamina and the car’s performance.

Had I been more disciplined with myself and stricter in keeping myself bed-bound upon my return, I doubt I would have landed in the position I did on Sunday night. But then, had I not landed there, I don’t know if I’d be on the up-slope to recovery I find myself on now. Sometimes you need to plumb the depths before you feel the benefit of the clean-aired heights.

Sunday afternoon took the biscuit, really, as K and I set out for a pleasant Sunday drive around the countryside to enjoy the spring sunshine and run-in the new car. After and hour and a bit of driving, I began to feel the fatigue creeping in and by the time I got home after around 2 and a half hours out of the house, it was pretty much game over.

What alarmed me, and what caused the moment of pause on the edge of the bed as I got myself ready to sleep, was the new sensation within my chest which burst into prominence.

Back in the days when Emily had her knackered old blowers (not the shiny new ones she has now), she used to write in her blog about her chest throwing hissy fits and causing enforced rests and lie-downs. I thought I knew exactly what she meant, having felt the overwhelming tiredness and sense of exhaustion after over-exertion. But sitting on the end of the bed last Sunday, I realised that I hadn’t even touched the sides of it yet.

I’ve had chest pain before, usually pleuritic, occasionally pneumothorax-related, but always of the same variety: a sharp, stabbing pain the side of the chest, usually around the lining of the lungs, where one can imagine a large chunk of infected tissue rubbing angrily against a chest wall which is struggling to keep it in check.

This, however, was something entirely different. This time it was a kind of internal stinging sensation which felt like the inside of my lungs had been rubbed raw with a grater and immersed in a vat of TCP. And unlike the pleuritic pain, there was no sign of it fading away with a few deep breaths.

As I laid in bed on Sunday night, with K lying next to me and sensing my discomfort and utter dejection, I tried to put into words what was going through my head. Sadly, I am not the same wordsmith orally as I am on paper, and in the heat of the moment, my vocabulary failed me.

I sat and stared straight ahead of me and desperately tried to recall a time when I’d felt lower – more hopeless and filled with sadness. For a second, a fleeting moment at my parents’ house in the build up to Christmas after my hospital admission last November entered my head, but that had lasted just a few seconds and this decidedly not so.

The truth was, I was tired. Tired of the fighting, tired of the same old stories, the ups and downs, the scrapes and pickups, the ever-turning and tightening vice around my chest. I was tired and I just wanted it all to go away. Nothing anyone could say could make a difference – something K seemed to instinctively know and chose to observe.

Then the strangest thing happened. As I sat and contemplated the worst of scenarios, I thought about my brother and what he’s been through. Not only the completion of 11 weeks of impossibly hard training and testing and fighting for the commando course, which he had just last week reached the end of and grasped with proud hands his Green Beret, which will go with him everywhere from now on.

But also the times he’s fought through everywhere else: through his year out in Tonga, when he so nearly gave up and came home after just a couple of months, but stuck it out and had one of the most remarkable life experiences anyone can imagine; through his year at Sandhurst, fighting through test after test, performing top of his class, but never letting anyone know how truly hard work it was; right through to his running of the London marathon last year on a few week’s training and the number of people he inspired to sign up to the organ donor register, all because he told them he was doing it for me: I still bear the medal he took home, framed on my wall with his inscription, “Live The Dream” underneath.

I thought of all of these things and I saw myself reflected in his eyes and I realised that I couldn’t give up. What kind of message would that send out to my friends, my family, worst of all my Godchildren, my two fabulous, wonderful young boys who I vowed nearly a decade ago to watch over, guide and protect in the name of God? How could I possibly decide that enough was enough, just because I was tired and it was hard?

As images of my brother washed over me, seeing him at his lowest points of the last 11 weeks, fighting for strength through everything and finding it within himself to keep going, I knew that I had to keep going too. What’s more, I knew that if my parents had passed on to him the ability to keep going and never give up, then I must have the same genes flowing through my body, too. If one of us can, I’ve not doubt in my mind whatsoever that the other can, too.

Sunday 1st April, 2007 will go down in my mind and my history as the lowest point I ever reached in my battle through life so far. But when I look back on it, it won’t be with pain or disappointment, but with a profound sense of pride and pleasure that not matter how dark it got, I was able to see the tiniest, remotest speck of light at the end of the tunnel – and I will make it there. Sooner or later.

PS – this has taken me nearly an hour to write in one sitting and, tired and emotional as I am, I’m not about to sit and reread it for typos. If I’ve spelled something wrong, that shall be as much my legacy as the rest of the sentiments in this page. Be well xx

PPS – following the above revelation, I discovered on Monday the quote which you saw posted earlier in the week, which blew me away because it basically said everything I’ve said in the post above, but in less than 25 words. Some people just have a gift for short hand, I guess…

…a discharge makes.

It took a while, but I finally managed to get myself kicked off the ward yesterday afternoon.  Probably more significantly, it was at the prompting of the docs and not through me harrying them as much as possible to get them to let me go.  In fact, in contrast to my usual practice of starting my “let me out now” lobbying campaign from the moment I arrive on the ward,  I actually didn’t mention it all to the docs until they raised it with me.

The thing about hospitals is that they provoke mood swings more severe and frequent than turns of a steering wheel in a rally car.  It’s possible to go from happy-go-lucky, ain’t-the-world-gorgeous, by-jove-what-a-wonderful-place to  weight-of-the-world, deepest, darkest blackness in a matter of seconds, and it can take a similar amount of time to recover back to normality.

None of which helps much when you’re trying to make sense of the random and rapid variety of things going on in your head throughout the course of the day.

If I said that’s the main reason I’m happy to be out and to be comfortably ensconced back at home in my study in my PJ’s and dressing gown, I have to admit I’d be lying.  Above all, it’s just nice to be back in control of my own day – not having to rely on the timings of physios, doctors, nurses and ward staff to decide when I can and can’t sleep, how long I’m allowed to rest for and the quality of my rest periods.

Back home, everything is part of my own control.  Except, ironically, my chest. But I suppose you can’t have it all.

I still don’t feel 100% – in fact I’m still wavering around 70% at the moment, but it’s a whole lot easier to be positive about outcomes when you’re not staring at the same 4 walls for 18 hours a day, or being woken up to eat a plate of mush which used to be vegetables.

It’s alarming when you spend as much time looking on the bright side as I do to find yourself in a situation where you can’t see a chink of light, let alone a whole side of brightness.  I’m sure that the very fact of feeling down about the world enhances itself because I get annoyed with myself for letting it get on top of me – a self-perpetuating circle, I suppose.

Now I’m home I just have to concentrate on doing what’s best for me and not over-working myself in my bid to get back to normality.  The last time I came outof a lengthy stay in hospital, I went back to Mum and Dad’s to recouperate, but this time I’m trying to skip that step and stay at the flat with K.

The next few days will tell us whether that’s a good or bad decision – largely depending on whether or not I can discipline myself to remain inactive as long as I need to be.  The danger of being at home as opposed to Mum and Dad’s is that there is far too much temptation to “just do” this and that, and all the this’s and that’s soon add up to being way too much and I find myself over-exerted again.

The main thing is that being back home I feel much more myself – more easy about things and less penned in to someone else’s routine.  Now I’m back I feel like my mind’s my own again and while it’s naturally going to take me a while to wash away all the negative thoughts, they’re certainly going to seep away much quicker in this environment that they were ever likely to on a ward.

I want to say a huge thank you to all of you who’ve left me messages and sent me emails – it makes such a difference to know that there are people out there rooting for me and willing me on.  It’s hard to explain the feeling of knowing that someone’s getting something valuable from a blog like this – it’s part of the reason I set it up but also one of the things I least expected to actually happen with it.

If nothing else, I hope the last few weeks (and hopefully the next few) will help to show that no matter what lows you sink to in health – be it mental or physical – there’s always a way back.  I’m under no illusions that sooner or later the physical is going to become insurmountable, but with a positive mental attitude (oooh, the PMA cliche!) and the support of my family and friends, I aim to make sure that I make it “later” – and preferably long enough to get a fresh set of blowers.

Take care, all of you, and look after yourselves.  Every single one of you is important to someone, and chances are you’re more important to some people than you will ever know.  Never forget that you’re amazing.

Alright, love-in over.

Ups and downs are par for the course in life, and we all learn to live with our own particular roller-coasters and merry-go-rounds.

Right now, I’m in a pretty substantial dip, enclosed as I am in my hospital room with what appears to be very little day-to-day improvement or sign of change.

I’ve been in just under a week now and, while I do feel better than I did when I was admitted, I don’t feel like I’m somewhere the docs might describe as “better”.

What’s become worse over the last few days is my intense focus on my transplant and when it’s going to come.

For the last 20-odd months, I’ve lived with the ever-present likelihood of that crucial phone call at any time of the day or night, but it’s always been something which I’ve lived with in the background and not paid much heed to.

Now things are looking less rosey, and with landmark moments being missed and life being put on hold, the urgency has been brought to the fore and the once-in-a-while thoughts have turned to a daily dwelling.

What upsets me most about things at the moment, though, is how much this borderline obsession is changing me as a person.

Not only do I feel more negative than I have for a while – finding myself struggling to see the fun side of life or consider anything that might be conceived as residing in the “future” – but I’ve also developed what can only be described as a jealousy towards others.

One of my closest “net-friends”, with whom i’ve shared many of the bizarre, amusing, surreal and downright scary moments of the transplant process, has been granted the gift of life which had so long eluded her.

But rather than finding myself eagerly awaiting news of the new joys she’s discovering every day, I can’t bring myself to catch up on things because I am constantly hit by a wave of “what about me” feelings.

I don’t recognise this as a trait in myself – it’s just not me. I’m not a jealous person and i’ve always delighted in the triumphs of my friends, family and all those around me.

So why the change now? What is it about my life at the moment that has brought out parts of myself that I never knew I had?

They say you learn a lot about yourself in adversity and “they” are often right. But how much of my current mood and outlooked is a deep-rooted personality defect that’s been dormant for years and how much is it merely distorted through the prism of life-threatening illness and the hope of salvation?

I honestly don’t believe I’ve changed as a person, nor do I think that my current health-hurdles are insurmountable. Similarly, I don’t expect my run of negative thinking to go on forever, but see it merely as a darker period brought on by hospitalisation – an effect I’m all too aware of from past admissions (both recent and historic).

The trouble with lung damage and infection is that it’s incredibly hard to know when you can reasonably expect to regain your lost lung function after a bout of infection and when you have to accept that you’ve waved goodbye to the portion of lung for good.

Clearly, the lower the function in the first place, the less there is room for movement either way. So when lung function drops, it’s hard to keep the fatalistic wolf from the door – both physically and mentally.

I’m not giving up yet, though. I’ve been through tough times before and although I’ve never considered myself quite as close to kicking it as I have this time, I’m confident that I can get past it.

This is largely thanks to my ever honest and sensitive team at Oxford who know what goes through my head and aren’t afraid to tackle the issues – and fears – as they come up.

I may not be able to bring myself to stay fully abreast of a good friend’s post-transplant progress, but I can still remind myself how often things looked bleak before the big day arrived.

Everything comes to he who waits, and while my new lungs may be the longest-settling pint of Guiness in history, I’m sure I’ll soon be frustrating someone in my position with my tales of new wonder in my life.

No, not like that, you dirty-minded little ratbag.  Hehe – I said ratbag.

No, swinging as in modd-swings, as in ups and downs and roundabouts – a very Miton Keynes kind of blues.

Today’s been full of it.  Every particular kind of “it” you can imagine.  Except that one.  I’ve been up, down, and all around, trying to work out what on earth my head, body, mind, brain, chest, feet and hands are up to.

I’ve decided the answer is that I don’t know.

Having spent the weekend doing nothing, following two days of doing nothing, I’m feeling somewhat bored of nothing-ness.  Today was supposed to be a better day because a) I’ve spent 4 days doing nothing, so I must have improved, even just a little and b) I actually had something to focus on – a telephone interview with David Seaman (ex of England and Arsenal) for CF Talk.

It started slowly (the day, that is, not the interview), it taking me a while to wake up, but I did get up with a good deal less pain than I’ve had for the last few days.  This morning’s discomfort was more in the line of “aches” than pains, which I attribute largely to muscular discomfort after over-compensating for the positions which caused me pain over the weekend.

After dropping K off at work, I prepared for the interview, but when I phoned, David was out (how inconsiderate).

I then sat around for the rest of the morning and I have honestly no idea what I did in the 3 hours between phoning DS and speaking to him when he phoned me back this afternoon.

I’d rather given up on the idea of speaking to him today, actually, and was hugely tired before he did call.  I toyed with the idea for a while of leaving an out-going voicemail message saying, “Hello David Seaman, thanks for calling back, I’m just having a bitof a nap at the moment, but let me know when you’re free and I’ll call you back when I wake up.”

Thought it might seem a bit odd.  Especially if the BT man rang.

Still, I managed to prise my eyes open long enough to hang on for his call.  I managed to stay awake all through the interview, too, which I took to be a good thing because I can’t help feeling it’s a little rude to nod off when talking to a celebrity over the phone.

As it happened, I’m not sure he would have minded, since he seemed like a really lovely bloke.  I managed to glean lots of interesting bits and bobs from our half-hour chat today, including the fact that he is a huge INXS fan, which I promised not o hold against him, in the same way I tried not to hold it against him that he captained the Arsenal side which beat Southampton in the 2003 FA Cup final I was in Cardiff for.

I also learnt he owns a Geri Halliwell album.  He claims it’s his wife’s.

After that, though, things seem to have gone downhill.  (In my day, not the interview, that is).

I picked K up from work and took myself off to bed, where I dozed for an hour or so, then propped myself up in bed with a cuppa to read for a while, but found myself feeling distinctly unpleasant after not too long.  This rampant see-sawing of  wellness has started to drag in the most incessant way.

I’m finding it harder and harder to stay on an even keel mentally when my body sees fit to flip-flop all over the place physically.  It’s not that I seem to be changing from day-to-day, it’s that I can change from hour-to-hour, one minute up and full of energy, ideas and get-up-and-go and the next minute with less energy than a battery-run bunny after a 10-hour run-off against the Duracell dude.

If only there was a pattern or a rhyme or reason to what was happening or when it happened, I would at least be able to square it in my head so that I was prepared for the sudden on-rush of bleakness.  But the constant swinging from state to state creates such an enormous  flux through the day that I find it impossible to anticipate and I find myself being dragged down mentally as soon as I flag physically.

I am hoping against hope that the next few days bring a renewed strength and chance to focus myself on to some of the things I really want to do, because much more of this flip-flopping, see-sawing, up-downing and I think I really might go mad.

Either that or I’ll find myself watching day-time TV, which is the same thing, really.

I still can’t move, but on the plus side, we have nice new bookcases in our study, which means the floor no longer resembles a preparation area for Fahrenheit 451.

Ever since we created our new study out of K’s old bedroom in the flat, we’ve had a desk and filing cabinet, but no where near enough shelf space to collect together the frankly bonkers number of books we both own.

But now, thanks to a mercy visit by both sets of parents, we have two gloriously beaming new bookcases which not only hold all of our current collection, but also have enough room for us to “grow into” – for the next six months or so, at least…

I was entirely useless at helping put them up, though, as I’m still pretty much immobile with whatever this virus is I’ve picked up.  For variety, the pain today has focused itself mainly in my neck, making me unable to glance sideways at people in that wonderfully comical manor which I so enjoy.

Not only that, but it’s meant that every time someone sitting next to me asks me a question, I answer them with a half-hearted wince as I momentarily forget my aches and turn quickly to answer them, only to be reminded instantly that turning my head 90 degrees is exactly the one movement that I’m incapable of today.

Still, at least I’ve not lost my sense of humour. (At this point I’ll gladly thank my parents, K and her parents for not correcting me in a comment below).

Generally, today (and yesterday) have been pretty rubbish.  Not only have I been in near constant pain – or at least major discomfort – but I’ve also had to miss out on a really good friend’s birthday celebrations and also to sit idly by and not be able to help put together things to go in my own flat.  Not a highlight of my year so far, I have to say.

I’m trying incredibly hard, however, not to let it drag me down, although to be honest it’s starting to.  I’m not ill, so I can’t complain really, but I do’nt feel well enough to really “do” anything, which is unbelieveably frustrating.

It’s so hard to define what’s going on with my body, or my head, at the moment and it’s really rubbing me up the wrong way.  All I can hope is that another day or two of rest will be enough to drag me out of it and that as my physicality improves, so will my mood.

If not, heaven help poor K as she’s had to put up with enough of a mono-syllabic, sour-faced, misery-guts of a boyfriend for the best part of half a week now.  Please God I get better soon, for her sake if no one else’s.

I’m nothing if not reliable – I’m quite liking this new era of being able to work out what my body’s telling me, it’s certainly better than the confusion leading up to Christmas this year (see Nov/Dec’s posts for more) – as yesterday and today I find myself back on the wagon and with enough energy to get through the day again.

Not only that, but I’ve also found the time (and inclination) to start a new ball rolling.  Yesterday, for the first time in nearly 3 years, I think, I actually sat down and started writing a new play.  It’s only small, and not very grand, but with 8 pages down on the first day, I can really seee where it’s going, which is somethin of a rarity for me when I first start projects.

It’s actually based on a couple of ideas I’ve had for quite a while, but have only recently strung together to make a sensible whole.  The whole thing kicks off with an image/scene I’ve had in my head for ages, but not been able to find the right context to put it into.

One of my biggest problems when I start out writing is knowing where things are going to go and knowing that there is some conflict there which will drive the story/plot.  Many of my abandoned attempts at plays in the past have fallen by the wayside because nothing happened in them.  As good an ear for dialogue as I think I have, all talk and no substance doesn’t make for a very interesting play.

So I’ve kicked off the new one with a cracking first 8 pages at the first sitting and I’m hoping to keep up with around 5 pages a day in the hope of getting a first draft done by the time I go into hospital for my next planned course of IV’s at the start of April.  From there, if I like it, I’m thinking of submitting it to the Verity Bargate Award which Soho Theatre runs every year.

It’s about time I actually started to put my scripts out there and stopped sitting around at home calling myself a writer with nothing but a couple of 10-page Youth Theatre pieces to show for it.  I also plan to redraft an old script of mine which I workshopped when I was out in Texas – I’ve got reems of notes on it, but never seem to have managed to get into the groove of turning it around.

I don’t know if it’s the spring sunshine, the move away from the cold, dreary winter nights, or the knowledge after Laughter for Life that I really can achieve something if I set my mind to it, but I seem to have found not just inspiration, but motivation thrown in.

I’m all too aware of the ease with which my motivation can drop, so I’m keen to harrness it while I can.  And once I’ve built up some momentum, hopefully it’ll just keep coming.

And now I’ve blogged about it, of course, I’ll have plenty of people popping their heads in to ask how it’s going, which is only going to make me work harder, since the only other option is learning how to lie convincingly about what I’ve managed so far – and that’s just not me.

It’s been a bit of a weird week this week – I appear to have been either out of the house working or running errands, or asleep.  It’s a bit all-or-nothing.

After travelling home on Monday I was shattered, but ok with a bit of an afternoon nap, then I had Tuesday morning to laze around before being on Taxi duty for K (through choice not compulsion, I must add).

Then yesterday, K started her new job (yay!), which meant I was up at 8am to get her there (boo), and then found myself coming home and passing out on the bed again till the afternoon – not intentionally, but when your body’s bossing you around after a weekend like mine, you listen.

Then last night it was back to normality with my session at MKT with the Youth Theatre.

I say “normality”, but it’s not every week that I get to spend 20 minutes shooting part of a short film with Samantha Janus just after she’s come off stage in Guys and Dolls.  Even by my celeb-bumping-into standards, this was a bit on the surreal side, my friend Helen (who’s the dep wardrobe mistress on the show) having spoken to her and got her to agree to do us a favour and pop up in cameo in our opening film for the YT show.

She was lovely, and very accomodating, especially since we literally accosted her straight off stage, at a time when I would imagine most performers just want to be left alone to veg out – especially with another show starting in just over 2 hour’s time.  But she happily stood around and delivered her line of dialogue for us enough times for us to cover it and we left her to it.

The rehearsal itself was very good again.  I spent the first part working with the Chorus on the piece I’d written, which was good fun, although slightly odd to be blocking something I’ve had in my head.  It’s what I love about working with performers, though, because it really gives you a chance to work through things and see how they work -and if it’s your own script, you can chop it and change it as much as you like.

The second half of the session was back with my Hamlet trio, who again worked diligently and have formed a great little grouping.  They were struggling slightly to get to the meaning behind some of the Shakespearean waffle, but we worked through it and managed to get through to what lies underneath the flowery poetry and make it make a bit more sense.

Although the show’s not too far away now (and if they’re reading this, they really need to be learning their lines!!), I think this piece has the potential to really show how talented some of our young people are.  Combined with the piece that Suze is directing – called After Juliet, a modern take on the aftermath of the Romeo and Juliet story – it’s a chance for our older members to really show some flair for the dramatic, and we both know that they’ve got the range and the power to do it.

That’s not to say it’s not going to take a considerable amount of work on their part, and support for them on ours, but if the work goes into it, they could make it something really special.  Of course, if they don’t, there’s the worrying prospect of it coming out as a group of youngsters lost in a mire of misunderstood poetry.  But that’s the challenge.

I’m hoping that this weekend is going to provide a nice window of relaxation for me – a chance to stay in bed, or veg on the sofa and do as little as possible, whilst shoe-horning as many calories as possible down my throat to keep energy levels high and infections at bay.

It may have left me struggling for energy, but I’m determined that the weekend isn’t going to take me down!

Well… wow.

Over the course of the last 7 or 8 weeks since I first officially came on board the Laughter for Life project, I’ve sat down or laid in bed at night and thought about how it was going to go and ru all kinds of best-case/worst-case scenarios through my brain. But none of them came even close to last night.

It was, without doubt, one of the best nights of my life and one of my greatest achievements. I felt both proud and piviledge to be part of such a spectacular and succesful event and I can’t even begin to express my gratitude to all of those who were involved, helped out, donated or just encouraged us to do it.

Shattered now, yes, but boy was it worth it.

We didn’t have access to the space until 6 o’clock, so we turned up en masse at the venue around 5.30 to put our stuff down in our function room and lay out our battle plan. Emma, myself, Paula and Rose all took on various jobs without much discussion and everyone just seemed to fit in around what we were doing.

I don’t want this to be a stupidly prolonged thank you session, but I think it’s safe to say that without the assistance of the “significant others” – Brad, K and Julian – things would have been a lot more bumpy.

I left everyone to handle the front-of-house goings on and found my way to the auditorium and found Suze all ready and raring to go as our Stage Manager for the evening. I had no idea that she was going to be as busy as she was – having assured her it was just going to be a case of jogging each act with a 5 minute call before they were due on stage.

As it happened, she was completely invaluable, doing all the legwork that I couldn’t have done. I think our partnership for the night was rather like the proverbial swan, with me sitting serenly above the water looking calm and controlled and marshalling people here and there, whilst Suze paddled away furiously under the surface making sure everything I was marshalling was where it should be to be marshalled.

The acts all turned up in plenty of time (more of an achievement than you’d have thought, let me assure you) and were absolutely brilliant to a man. Kind, generous and fun to chat to, I managed to have a good giggle before we even got to the show itself.

I had Rob, my documentary cameraman, following me around getting all the madness on tape, so it’s going to be interesting to look back on it in a few month’s time and see just how calm I was (or wasn’t!) looking.

We had just over an hour to get everything set up, including rigging a follow spot, getting the band set up and sound-checked and giving the acts a chance to familiarise themselves with the space and the set-up.

They all wandered on stage from the green room just before we opened the house (let the audience in) and chatted with the band to arrange their walk-on music, which was great for them to be able to choose. The house band – Big Buzzard – were brilliant and added such a sheen of professionalism to the whole event.

They were something of a last-minute addition, having offered up their services at relatively short notice, but I’m so glad we took them up on their offer – they really added that extra dimension to the show.

The show itself was simply stunning. The entire bill was nothing short of hilarious and several times throughout the even I thought I was in danger of embarrassing myself with loss of bladder control. If I’d not be tied to an oxygen cylinder, I’d have been rolling in the aisles.

Bill Bailey strung the whole thing together perfectly – giving everyone perfectly distilled little pieces of his humour whilst linking between the acts.  Geoff Whiting, Glenn Wool and Rob Rouse tore through the first half and had me coughing with laughter the whole way.  After the break, I had managed to compose myself enough to be less of a distraction through Ian Stone and Dara O’Briain’s sets.

During the interval, I popped backstage to the Green Room to grab a fresh O2 cylinder – it being the nearest secure place to leave them through the show – and was planning on heading out front to catch up with all the various friends who’d made the effort to come along.

As it was, I ended up in a really long chat with Rob, Glenn, Dara and Ian about my O2 and then segued into CF and its various effects/characteristics.  They were all genuinely interested and keen to learn, and being the Ambassador I am, I’m never going to pass up an opportunity to educate people on CF!

After the show, I was keen to make sure everything got sorted backstage, but was hurriedly ushered off to make my presence at the after-show drinks reception felt.  Although I think what I actually ended up doing was making sure that Richard Madeley understood all of my gobbledigook on his crib sheet for the auction.

Emma stood up and started things off with a run of thank yous and talked for a bit about where the money we raised was going and what we were all here for.  I then followed up with a brief heartstring-plucker to get everyone in the mood to dig deep in their pockets for the auction itself.

I have to say I’d not done any prep for it apart from thinking about my opening line, and I was pretty impressed with what I came up with.  I knew I’d have to talk about some difficult stuff, but I think I’m so used to it now, it just rattles off without me having to think about it too much.

It seemed to set the tone well though, (“Thanks a f**king lot” was Richard’s response when he took the mic from me) and the auction went really well.  Considering all the lots we had were donated for nothing, everything we cleared was money straight in our boxes and we did a great run for 11 lots – over £1,800.

That figure will be swelled over the coming few days with cash from programme sales and the collecting buckets (somewhere in the region of £1,200), and individual donations (which is currently overr £1,000 and expected to rise) – all of which is to be added to our ticket sales, which is somewhere around £15,000.  All told, we’re looking pretty good to hit £20,000 for the whole night – an astounding and truly humbling amount of money.

If you’d like to donate, please please please do – you do it safe and securely (and anonymously, if you wish) at our Just Giving page here.

I think one of the biggest compliments of the night for me, though, was to hear today that there were people in the audience who had no idea they were at a charity gig at all – they had bought their tickets purely on the strength of the bill we presented (no pun intended) and when they realised it was for charity and learned about the cause, couldn’t wait to dig into their pockets and drop cash in our collecting buckets.

I said last week that this whole experience had taught me how wonderful people can be and to believe in the spirit of human nature and it’s only been reinforced over the last couple of days.

This whole event has been one of the greatest – and most rewarding – experiences of my life and I have to thank Emma and Emily not only for letting me be a part of the project they started, but for allowing me to feel so much a part of the team and the cause.

If you’re not already signed up to the organ donor register, you have time to do it now.  If you’ve just read through the whole of this blog entry, you clearly don’t have enough to do today, so you’ve got enough time to take out 2 minutes of your time to go to www.uktransplant.org.uk and sign up right now – it’s fast, it’s electronic and it could make a difference to up to 9 other people’s lives.

Don’t let your death be in vain, and don’t let the 400 people who died last year while waiting for a transplant have passed for nothing.  If there’s any message that should come from this weekend, it’s Live Life Then Give Life.

Amid all the hullabaloo (gotta love that word – never thought I’d use it here!) surrounding L4L, I have actually been looking after myself, too, you’ll be pleased to hear.

In fact, I was booked for a check-up at clinic today.  I popped along, with K in tow for waiting-room entertainment, and saw all the necessaaries, who all seemed to be buzzing about my appearance on Radio 4 and/or the upcoming gig.  It was almost like a taste of celebrity…

But most importantly, things went really well.  Off to a cracking start when I weighted in at 52.6kg – the heaviest I think I’ve ever been at clinic.  According to my notes I’ve put on a kilo and a half in a month – pretty good going!  Especially considering a week of that was spent in hospital, where eating enough calories in a day is more like a carefully managed game of skill than a diet-plan.

While I was up there, since I was due to start back on my TOBI neb (a nebulised form of the antibiotic Tobramycin), I asked them to do a check on my lung-function before and after, as the last couple of months I’ve had of TOBI (it’s taken on a month-on, month-off basis) I’ve noticed my chest getting tight after a dose and I wanted to check it out.

Sure enough, my before and after L-F showed a drop from 0.7/1.4 to 0.6/1.3, which doesn’t appear overly significant, until you work out that actually what shows up as a 0.1litre change on paper calculates to a 14% drop in the “real world”.  And I challenge anyone to lose nearly a 7th of thier lung capacity and not notice.

So after a quick conflab, the powers that be (that’s my CF nurse and Doc B) sent an order to pop me on a ventolin neb to see if it would relax my airways back from the TOBI.

I haven’t taken ventolin in years, and even then it was only as an inhalor, not nebulised, so I don’t have a great deal of experience with it and didn’t know what to expect.

What I didn’t expect – at all – was to find that after a single 2.5mg dose, my L-F jumped to an eye-watering 0.9/1.6 – a scale I’ve not reached in over a year!

To say I was happy is to do understatment a disservice – it’s unbelieveable that a quick 2 minute neb can make such a difference to my breathing.  But more than just the numbers on the page, I really noticed it in my freedom and ability to breathe and walk and just generally not feel breathless.

In  fact, there’s a good story that will show you how good it was.  When I got up to leave the ward after the trial, I switched from the hospital-plugged oxygen supply back to my walkabout tank and wandered up the corridor to Pharmacy, from where I then walked back to the car with K, had a 5 minute telephone conversation, walked back to pharmacy, returned to the car and then popped quickly back inside for a pit-stop before we left.

When I finally got back to the car and switched to my “driving cylinder” (long story), I discovered that I’d forgotten to turn my walkabout cylinder on when I left the ward.  So I’d spent the best part of 45 minutes walking up and down and all over without once noticing a shortness of breathe and questioning my oxygen supply.  What’s more, I actually remember noting to myself how I seemed to be walking faster than I normally would without noticing any adverse effects.

You don’t get much better than that.   Consider me not only well chuffed with my day’s activities, but on a personal high both physically and mentally.  Things have a way of turning themselves on their head – it only takes a bit of positivity and something to add a bit of meaning and purpose to your life.

Blimey, life moves at a hundred miles an hour sometimes, doesn’t it?

A friend asked me the otheer day how I think of things to put in this blog everyday – and I have to admit sometimes it does seem a little pointless to be writing when nothing much has happened.

And then you get days like today, where it’s ALL happened!

It all kicked off at 10am this morning when the phone woke us up.  Until today, I’ve been up and about by 8.30am every day for over 2 weeks – completely naturally, waking of my own accord.  But the first day I sleep in, it all kicks off.

Steve from Tin Racr Design was on the phone, asking if I’d got his proof of the programme through yet, which I had to confess I’d not seen because I wasn’t out of bed.  Hastily rolling out of bed, I plonked myself in front of the computer and checked my mails to discover not just the proof, but also an email from the printers we thought were handling the printing for us saying they could no longer do it.

To say I panicked would be overstating it slightly – I’m not really a panicky person –  but let’s say my calm took a bit of a dent.  Rolling K out of bed, I thrust the phone, a yellow pages and an outline of what we needed into her hands and got her dialling while I jumped on the job of proof-reading the awesome-looking programme.

In the middle of the chaos, other emails kept firing in from various sources, all seemingly demanding instant attention.  I can go days without getting any emails (well, ok, not at the moment) and usually you can sort them into various piles of urgency, but almost every one that came through today seemed to need an immediate response.

Understandably, with all my activity and the prospect of an exhausting rehearsal session at the Theatre tonight still to come, K was getting anxious that I pace myself and make sure I was keeping enough in my tank.

I pride myself on working well under pressure and although I had a couple of moments of dread at points today, I managed not only to address everything I needed to, but also to make sure I had enough time to have a proper lunch and take time to lie down in the afternoon to recharge before work.

As well as signing off on the programme, today has seen me: get hold of a follow-spot for the show, finalise two auction lots, get a sponsor for the programme (the legendary Dunham’s Solicitors in MK), confirm all the technical details with the venue and recruit a stage manager to handle the back-stage organisation for the show (well, nearly recruit, anyway, as it’s dependent on getting hold of someone else first – but we’re nearly there).

Not only that, but I’ve had a three-hour rehearsal at MKT for the Youth Theatre show, including an hour-and-a-half working solely with my three wonderful Hamlet cast members who have taken to the whole thing so much better than I could possibly have hoped.

Shakespeare is not an easy thing to grasp and there’s a lot of nuance and little touches to the text which can take an age to go over and discover in the rehearsal process.  I was so happy tonight to find that the cast have already got a good grasp of the text, but also that they are keen to share ideas and work with me and with each other to find a balance between their characters.

It’s been a long time since I’ve worked specifically as a director in a rehearsal setting and it felt great to be putting something together again – I realised tonight just how much I miss that area of the Theatre and how much more I want to do down that avenue.

On top of which, I also delivered the final part of the piece I’ve written to open the first and second acts of the show and it went down really well with the cast, which is always a good place to start.  I was concerned it might need a bit of redrafting, which would have been a headache considering how limited the rehearsal time now is, but it’s actually looking like it’s going to be OK as-is.

And now I find myself back home in front of my inbox again (with another 12 emails come through since I left the house at 5.30 tonight) and discovering a whole new load of greatness to polish off my day.

We’ve got some really good media interest, which will hopefully convert into coverage, and a few more pieces of the auction have fallen into place – including securing a workshop for people to see behind the scenes on Avenue Q, which I’m so insanely excited about it’s funny.

I’m now tired enough to go to sleep almost immediately, but I’m also pleased that I don’t feel totally exhausted.  I suppose the true measure is going to be how I feel when I roll out of bed and drag myself over to Oxford for clinic in the morning, but I think I’ve got the Big Guy on my side this week and he’s making sure I’ve got the fuel inside to see me through the weekend.

That said, I’m not taking anything for granted: I know I have to look after myself and pace myself or I’m not going to be able to make the most of what’s going to be one of the best night’s of my life.

Four days and counting!