Archives: Transplant

We’re 5 days out from Laughter for Life and things are gathering pace with alarming speed.  It feels constantly like there’s a thousand things to do for us to be ready on time, but actually, when I sit and analyse where we stand, there’s really very little to be done.

It’s reassuring (in a sense) to think that the night could actually go ahead and probably run perfectly smoothly if we all completely stopped working now and did nothing until Sunday.  Of course, that’s not going to happen – we’re all far too commited to making this night the best it can possibly be – but I think it may serve well to remind ourselves as we fret over the final details that actually the leg-work is behind us and we’re now adding the icing/gravy/hair gel/anaolgy of choice to an already fab night.

Today was press release day and with the help of our awesome PR-guru Paula, who’s done a whole heap of work for Live Life Then Give Life in the past, we’ve mailed out press releases to local and national media.  I think the naitonal ones are due out tomorrow morning, but all my local ones have gone today, so I’m hoping that tomorrow and Thursday should be full of phone calls and sparked media interest.  We’ll have to wait and see.

Also today, we’ve made great strides in gathering some great lots for our auction which is taking place in the VIP party afterwards, which include some signed Might Boosh stuff, a raft of Theatre tickets with accompanying bonus features which are still being pulled together through various wheeler-dealings around the place and some great pamper packs and treatment sessions and some awesome original artwork.

Emma is really struggling with a new course of IV’s, which is incredibly rubbish timing for her, but goes to prove that CF pays no heed to any other masters and will wantonly and brazenly do whatever it can to intrude on life.  But, she is showing the classic resiliance of all PWCF and not letting the little bugger get in the way.  “Chest infection? Pah!  I laugh in your face! You shan’t stop me!”

Patrick, from Bill Bailey’s management agency is being a total legend in helping us get things squared away and sorting last minute bits and pieces with us and Steve from Tin Racer, who do all the artwork and design for CF Talk is ploughing through preparing the programme for the evening for us.

It’s amazing how helpful and kind people have been in coming together to make this event happen.  People have given us things, offered extras, consitantly gone the extra mile and done whatever they can to help us along, with goods, services, money or support.

It’s amazing to see just how much goodwill there is in the world and a sobering thought when you consider the cynical times we live in.  People seem to expect so little of other people and often assume the worst.  What I’ve found throughout the last six weeks or so that I’ve been fully involved with this as a project is that people are far more ready to support and help people than I would ever have expected.

I’ve always prided myself on thinking the best of people and often wondered if I’m being just a little naive in my belief in the goodness of the human race.  But this project has taught me to stick to my guns even when the world around me is presenting a universally cynical view of itself through the press and TV – people are fantastic and if you give them a chance, they will bend over backwards to help you out.

There is no way this night would have been possible without the MASSIVE assistance of a huge number of people and each and every one has made contributions that could have stopped the whole show in its tracks.

This is more than just a gig: it’s a chance to tell a whole new crowd of people about the importance of organ donation.  But more than that, it’s reaffirmed my belief in people and it’s also given me the confidence to believe that if I want to do something, I really can do it.

Five sleeps and counting until the night of the year so far!

I’m always loathe to jump up and down and rave about having a good few days without any enforced bouts of bed rest.  Well, let’s face it, I’m always loathe to jump up and down full stop any more.  All right, I’ve ALWAYS been loathe to jump up and down.  Even when I could.

Still, it seems that the last few days have been particularly encouraging for me – a full day’s shooting all day Saturday, a nice, restful Sunday which still managed to include a trip to K’s parent’s for a lovely Sunday/Brithday lunch for her Mum and a middlingly-active day today getting K sorted for her new job and fixed up with sexy new specs.

I seem – seem – to have found a nice equilibrium with my energy levels for the moment – succeeding in balancing a need for restful periods with achieving the most important goals of the day without running myself completely into the ground.

I’m hesitant to be fully excited until I get a couple of days further into the week with no repercussions, but so far, so good.

The day’s shooting on Saturday was really good fun.  Although we had quite a bit of time pressure to ensure we were out of the public areas of the Theatre by the time the matinee audience came in, we actually got all of the stuff we wanted relatively quickly and with very few hiccups.

We did, unfortunately, realise later that we’d miss-shot one scene and made a fatal error known in the trade as “crossing the line”.  This is far too hideously boring to explain in full to anyone not familiar with the term, as it’s a bit of a pedantic, anally retentive technical thingy to look out for, but unfortunately it’s one thing that can completely ruin a film when it’s all cut together.  Most of an audience would never be able to point it out, but would undoubtedly know there’s something wrong with what their watching.

Luckily for us, the scene in question with the minorly-major technical hiccup (or f**k up, depending on your view) is one which we still have to shoot a couple of additional shots for, so shouldn’t be too much of a problem to go back and rectify.  Fingers crossed.

Today I spent another morning in front of a camera, this time giving an interview for a student film for Bournemouth  University’s journalism programme about transplant and life on the list, as well as what can be done to increase donor rates.

It’s nothing major, but I was put in touch with the filmmaker through UK Transplant and as I said at the time I agreed to it, any publicity is good publicity.  I think it’s particularly good because there’s a chance it’ll be seen by a good number of students at the uni and that the message it sends out will get through to one of the most campaign-aware sectors of the population.

There’s huge amounts of resources sitting around university campuses in way of students who can be incredibly vocal about any subject close to their heart.  Make just a few of them aware of the importance of having people signed up to the organ donor register and there could be a whole new wave of Live Life Then Give Life supporters coming through the system and shouting louder than we have before.

Arrangements continue apace for Laughter for Life and I’ve spent a large chunk of the day on the phone to various people and rapidly swapping emails to finalise press strategy for the week, with local MK releases going out tomorrow.  Our national campaign should begin in earnest this week, too, although we’re a little disappointed that Bill’s not able to help us with shouting from the rooftops due to his already manic schedule.

That said, we’ve got an entire 3-hour gig lined up for Sunday night with some of the countries top comedians donating their time for nothing and for which we’ve already sold out a 600-seat Theatre, so it’s pretty hard to be unhappy about anything!

Here’s hoping the rest of the week stays as smooth as today.  We’ve got a few auction lots to finalise and gather, as well as the press and media work to cover.  I’ve got some technical gubbins to double check and artists to liase with.  We’ve got an auction to plan and sales to figure out, and I don’t even know what I’m wearing yet!

Gosh, it’s all go!

Normally, I’d have edited my last post to include this little epilogue, but I thought it was such a wonderfully tightly-written ode to self-pity that I’d leave it untouched for all to see that I’m not necessarily the relentless optimist I sometimes make myself out to be.

Anyway, it’s worth noting that while I say today has been rubbish, and physically, I’m right, it has, I’ve actually had two really good things happen which I suppose is something I should be clinging to, even if I do feel a bit poo right now.

First off I got in touch with a friend who used to work at the Theatre here who’s now tech’ing down in Bromley and he thinks he’s managed to sort us out a spot light for the show.  I’d spoken to the venue earlier in the week as they’d told us that they were happy for us to bring our own follow-spot operator with us so we wouldn’t have to pay their technician to do it, only to find out after arranging an op that they don’t actually have any spots any more!

But, thanks to Gary it looks like we’ll be squared away with one for the night, which is BRILLIANT really.

And secondly I had a really nice chat with Bill Bailey’s agent who also represents Glenn Wool and Rob Rouse.  I’d sent him a draft running order from the night and he’s been speaking to Rob about it, who gave me some brilliant pointers on how to make the best use of the guys and their time.

Coming from a Theatre background, I’m fairly good at knowing what pieces need to be in place for an event like this, but it being stand-up there’s lots of bits which are specific to the “genre” as it were which I’m not so au fait with, so it was great to get feedback from Pat and Rob about the night and make sure we’re putting on the very best possible gig for the punters who’ve stumped up their hard-earned to see some top acts and raise some cash for transplant services in the UK.

So although I can sit and wallow in my own little malaise if I want to, there’s really good reasons not to be too glum.

It’s all about perspective and I guess I’m struggling on that front just now.

I’m thoroughly confused.

I should be used to being confused by my body by now, I really should – nothing should really throw me about it’s day-to-day fits and wobbles and ups and downs. But somehow I just haven’t got used to the unpredicability of it all.

Take yesterday, for instance: after a really rather awful, moody, tired Sunday, I slept averagely well and woke up at 8.30am full of energy and enthusiasm and raring to go. I actually wanted to eat breakfast, which is something almost wholly alien to me, since my appetite doesn’t usually kick in until mid-morning at the earliest, so the extra energy boost was great, too.

I spent all morning ploughing through mountains of work and knocking things off my To Do List left, right and centre. I amazed myself at the speed with whihc I rattled through all the things I wanted to get done and I’d almost achieved everything by midday.

I felt entirely un-guilty about taking some time out in the afternoon to pop over to K’s brother’s to play with the little ones – one of whom has just discovered how amazing it is to be able to propel yourself towards whatever it is you want. I wouldn’t so much call it crawling, just yet, it’s more like commando-crawling as he doesn’t appear to have worked out that using your legs can help, but he’s on the cusp of a major revelation, that’s for sure.

Back home after an hour of fun and games (OK, an hour of sitting on the floor playing with Fifi and her Flowertots – don’t ask me who they are, we were just sticking them to the magnetic board….), I settled in to polish off the rest of the pressing bits and bobs which needed dealing with before close of play, then settled on the sofa to watch some TV and hit the sack.

Now, today, after an identical night’s sleep, with perhaps an extra hour in bed, I have managed to achieve almost nothing. Since getting up this morning I have felt entirely drained of evergy, lacking in any kind of resource to keep my eyes open and my brain switched on.

Compared to yesterday, I’ve got next-to-nothing done, although all the important stuff has actually been dealt with, but I had to go back to bed at lunch time and it’s really only since taking K to college this evening and sitting back at my desk around 6pm that I’ve been able to engage myself to do anything at all.

It’s immensely frustrating because I just don’t know where this energy-drain has come from. I seem to be yo-yo-ing up and down from day to day with little or no reason behind the ups and downs.

I remember saying here previously that I’d be OK with it all if it made sense and was plannable, but it’s impossible to know what each day is going to be like at the moment and I can’t work out whether it’s OK to plan things or if I should just wipe my diary and play each day by ear.

I don’t suppose I can really start doing anything differently, other than, I guess, be strict with myself at stopping when I don’t feel I’ve got the energy and making sure I rest myself when my body says no. But when you’re trying to plan for a major event just 10 days away (how exciting!), it’s frustrating not knowing how much you’re going to be able to do all day.

Still, all moaning aside, I can’t really complain about today because I did get to further explore my media-tart side of my personality with a live phone interview with Peter Allen on Five Live Drive for the BBC this evening.

The wonderful Fi Glover, who’s Radio 4 show Saturday Live I did a few weeks back, passed on my details to the editor of Drive and, sure enough, I got a call at 11am this morning to talk about things and asked if I’d come on the show live this evening at 5.25 – pretty much prime time.

It was a bit of a tough interview because, obivously, I was mostly interested in plugging Laughter for Life and transplantation, but it seemed that they were more interested in the CF angle of things. Which was nice but, you know, not really “news”… Still, I managed to get through all the CF awareness stuff, plus a plug for the gig, plus a load of awareness raising for organ donation AND a mention of the Live Life Then Give Live campaign. Not too bad for 3 minutes air time, I thought. Even if it did involve a little bit of talking over Peter Allen as he tried to interrupt…

So the publicity machine ploughs on and the date of the show gets ever closer. Things get more exciting by the day and I’ll be sure to post updates on here as soon as I get them. hopefully, I’ll have more warning of the other interviews and things I’ll be part of, which will mean I can put heads-up posts on here ahead of time.

A while back at the start of the year, I was sent an email by the press officer at the CF Trust asking if I’d be willing to talk to Radio 4 about my diet and having to take on an inordinate number of calories everyday.  Being the self-confessed media tart (MT) that I am, I nearly bit her hand off.

Having spoken to one of the team on Radio 4’s Saturday Live show, I was told the following day that they’d decided not to go with that story, but that they’d keep my details on file for the future.

I didn’t realise that meant a matter of weeks – just last Thursday, JP from the show called me back to see if I was free to come to the studio in London to do a segment on the same subject with presenter Fi Glover and stick around for the whole show.

Excited doesn’t quite cover it from my side of things – I love the media: TV and radio have always intrigued and excited me and to think that I was stepping up for 2 minute 2-ways on local BBC 3 Counties to a show that people had actually heard of was unbelievable.

So I roused myself at 5.30am on Saturday morning and stumbled around to do my morning dose of IV’s before I left for the studio in my Dad-powered taxi at 6.45am.

I did manage to dose on the way down a little bit, but arrived at Broadcasting House – yes, THE Broadcasting House!!! – at 8.15am feeling every so slightly very nervous.  I’ve got so used to doing local radio and press that it didn’t occur to me how nervous I was going to get going on a big national radio station.

As it was, the whole thing was fab.  I was on the show with Fi, the presenter, the regular poet they have on every week, who was a really good giggle and an Asian music producer who was fascinating to talk to and is doing some really interesting work in fusing musical sounds and styles from all over the world.

My section of the show – which I think ran about 10 minutes, although I totally lost track of time – went really well, although I was annoyed with myself for tripping over my tongue at the beginning.  I covered all the bases they wanted covered for the piece and even managed to get in a plug for Live Life Then Give Life and organ donation in general.

The show is up on the website on listen again all week, so check it out – I’m  on from about 5 minutes in.  Click here.

Further to the on-air discussions. though, I also got chatting to Fi after the show about Laughter for Life and she has promised to help out with publicity if she can – passing our details to a FiveLive producer and to the London Radio listings people, which should carry a bit more weight than just randomly attacking them with a press release.

As exciting as it was, it has also made the start of IV’s even tougher going, since my body disagrees mightily with Meropenem anyway (the drug I’m on) and  adding into it early mornings and irregular sleep patterns doesn’t help.

I know I’m going to have to take a few days to recover, but annoyingly, it’s hard to tell how much of this is IV-related and how much is down to over-work/exhaustion.  If I knew that, I’d be able to look after myself a bit better and space my workload, but as it is I have to assume the worst and take it as easy as I can for the time being till things pick up again.

Still, I was on Radio 4!

Nothing like a break through in planning and organisation of a big project to stimulate the happiness and reenergise you (see – it’s not just the steroids…).  As of this moment, tickets for Laughter for Life, hosted by Bill Bailey and featuring Dara O’Briain, are ON SALE.  You can buy them here

This is undoubtedly the coolest thing to happen this week, and will totally keep me charged full of positive energy until at least six o’clock.  And then I’ll come back here, read my excitement and get excited again.

But you must HURRY, because this is a fabulous evening of hilarious comedy from fantastic comedians (and other such hyperbole) and it’s going to sell out fast with a capital FAST (not hyperbole, actually true).

So if you’re really my friend, buy some tickets, otherwise I won’t like you any more.  And if you want to be my friend, buy tickets and I promise I’ll like you.

So there.

Did I mention it would be funny….?

Today has been a really hard day.  Despite being exhausted by the day’s activities yesterday – heading down to London and back, with an hour and a half’s meeting in the middle – I slept terribly, hardly managing longer than an hour asleep at a time, and waking up this morning feeling totally drained.

I knew that the meeting was likely to take a chunk out of me, and need me with a need to recouperate, but I wasn’t expecting to be bed-bound for three-quarters of the day.

Even now, sitting in the study writing this I know I’m not right – my brain isn’t really turned on and my chest is protesting.  I need to do some physio, which may help the chest, but I don’t know what I’m going to do about my brain.  I’m just waiting for my neb to work before getting some physio done.

I’m supposed to be going in to work tonight and I desperately don’t want to miss another week, not with the show starting to loom and only 2 weeks till half term.  I’m having all sorts of horrible thoughts of missing out on the whole term again and not being able to do anything for the show, not to mention landing Suze in the proverbial by missing sessions at such short notice that she doesn’t have time to geet cover or re-plan.

It’s just not fun – my body is rebelling and my mind wants to go with it and I’m fighting tooth and nail not to let either of them win.  And yet, I’m stuck on that see-saw between doing what I want to do and making my chest worse – there’s no telling whether it will or not.

The smart part of my brain is telling me not to go into work tonight and to stay home, stay in bed and get some rest, but the fragile part of my brain is telling me that I need to get up and out of the house to avoid getting chronically cross with myself and my chest for not supporting me in the things I want to do.

I don’t want to be here now – I don’t like being back in this place where everything I do has to involve a sacrifice somewhere else.  I want to be able to book myself to do something on two consecutive days and not feel like a slave to the whims of my lungs.

I know I have to accept that that’s exactly what I am now, and that I have to learn to work with them as much as I can for the time being until I get a shiny nw set which will let me do what I want when I want.  There’s really no point in me sitting here harping on about how poor old me can’t do what  I want to do and isn’t life unfair, because it’s not like I didn’t know that already.

Pull yourself together, get a grip on the realities of your situation and stop letting little things rock your boat.  Focus on the good things, do what you can manage to do and forget about the rest of it – there’s no point pining for something you can’t do, you might as well make the best of what you can do.

Believe me, I know how strange this sounds coming from someone who’s spent the last two months writing about the various different ups and downs in his live, but just now I’m finding it unbelievably hard to find the right words to describe just how happy I’m feeling.

This is one of those periods of life that just make you sit back and smile – to count your blessings and realise that the world is not really a big, evil place that intent on wearing you down, but rather that if you put yourself in the right position to be the master of your own destiny and you look at the world from the right perspective, things will sooner or later start to swing your way.

I can also appreciate how bizarre it might sound for someone who is currently waiting for someone else to die so that he can have a chance of a fresh, new tilt at life to even begin to decribe himself as the master of his own destiny.

But success or failure, good or bad, up or down is all a matter of perception.

Paul McKenna, in numerous published writings (not least Change Your Life in 7 Days, which I would recommend to anyone, even the most sceptical of self-help depreciators) cites the words of Thomas Edison when questioned as to how he felt after failing for the 700th time in his attempt to invent the electric light:

“I have not failed 700 times. I have not failed once. I have succeeded in proving that those 700 ways will not work. When I have eliminated all the ways that will not work, I will find the way that will work.”

Right now, in as much as these things matter to me, everything is going my way:

I’m back living at home in my lovely little flat with my girlfriend whom I’m very much in love with and I’m honoured to say is very much in love with me.

I’m working on 3 projects which not only motivate and excite me, but also give me aims, objectives and reasons to keep well.

My chest is behaving exactly as I expect it to.  It’s not ever going to fire on all cylinders again, but that’s why I’m on the transplant list.  All I can ask it to do now is support me as best it can until such time as God sees fit to call time on these knackered old blowers and give me a fresh set.

I’m surrounded by people whom I love and who love me back – my friends are fantastic and don’t ever make me feel bad for not being able to join in  things, nor complain when I pull out of things at the last minute; my family all go out of their way to do whatever I need of them, no matter how little or unreasonable; people I work with make huge allowances for what I can and can’t do and never bat an eyelid or make me feel like I’m stretching their patience (even when I know I must – I stretch my OWN patience with some of the last-minute turnarounds, it can’t be easy for others to deal with).

Every once in a while all the pieces in your life seem to align just so – like the planets and the sun, or the cogs of a machine – and for a moment life seems just right.  And it’s so, so, so important to seize that moment, to recognise it for what it is: fleeting perfection of it’s own kind which will last but a flicker, but if you see it and grasp it, it will last forever in the memory.

I’m under no illusions that this will continue unabated; I know there will be trouble ahead – harder times, darker times, more challenging and less fun times, but damned if I’m not going to enjoy the good stuff while it’s here.

Like the song says: while there’s moonlight and music and love and romance, I’ll be the one on the dance floor.

I’m sitting here tonight feeling very tired, but not shattered and still with some energy left in the batteries, which is a big step forward on last week, when come mid-way through Thursday afternoon (following the Youth Theatre sessions on Wednesday night) I was completely exhausted.

The sessions were great yesterday – we finished casting all the pieces, which is a job that remains just as difficult no matter how many times you’ve done it before, how well you know the people you’re working with, or how much preparation you’ve done.  As per usual, Suze and I spent a huge chunk of time in the session with people coming in and out to read for us.

What made it particularly difficult this time around was the strength of the group and the strength of the material.  We want more than anything to make sure that everyone who is coming along this term, whether a new member or an old hand, gets a chance to really stretch themselves and do something which is going to challenge them.  With this final round of casting, I think we’ve achieved that and I’m looking forward to the rehearsal process immensely.

This week was also particularly good because I got to hear my chorus piece in the mouths of the group and see whether it worked or not. I’m pretty chuffed to say it did – and I’m always amazed at the qualities that a cast bring to my writing over and above what I’ve written.  It’s exciting to see something you’ve written coming off the page and being performed – doubly so when it “works” and, for comedy, when it makes you and other people laugh.

I managed my energy levels a lot better this week than I did last week.  I used my O2 a lot more in the session, making sure I was on it whenever I was sat down – either at the side of the room during an exercise or for the script readings and other parts of the session, too.  I also took along snack food and drink to keep my energy levels up and ate well before I left, too, to make sure I made the most of my time there without exhausting myself.

It’s an annoying process to have to calculate your energy expenditure before doing anything and working out what is an isn’t possible, but it’s also a part of my life now that’s not going to change until my transplant, so there’s no point griping about it.  I’m a lot happier knowing that I’m getting to grips with it and can see potential trouble-spots far enough ahead to compensate for them.

Thursdays are now my designated “off” days, to allow for the fact that if I do over do things at work, I can spend the whole day in bed if I need to.  My diary is always clear on a Thursday now, and it will remain that way all the time I’m still working at the sessions to ensure I can give them my all without having to worry about the impact it will have on “tomorrow” and having to cancel or rearrange plans.

Because of that, I’ve actually done very little today, but it’s been nice to chill out a bit, since I’ve spent most of the week so far busying myself with my myriad diffferent tasks in the study.  I’m really enjoying being so busy and having so much on – particularly things that I can do from home without having to worry about expending energy going out and doing things.

More on my current projects as they develop, but lots of cool things happening, so keep ’em peeled.  Offers of help always appreciated (Rob) and likely to be taken up – anyone know any well-known stand-ups we can call?

Today has been just as productive as yesterday, but also HUGELY more exciting because I officially climbed aboard a project being run by the Live Live Then Give Life campaign putting on a comedy night at the Mermaid Theatre in London in March.

The history to the night is quite long and convoluted, but mainly involves Emily getting a phone call a while back from Bill Bailey, who’d been told through the grapevine from a reader of her blog that she was a fan and had been having a hard time.

Now, there’s a very funny story here about serial-schmoozer Emily getting hideously tongue-tied and not being able to form sentences, but I wouldn’t like to embarrass her, so I’ll leave that bit out. Oh wait….

Anyway, after chatting to her for a while, Bill apparently succumbed to what many people have come to know as the “Emily Effect” – that is, having spoken to a remarkable friendly, eloquent, funny, determined and energetic (in speech, at least) young woman about all the issues on which she campaigns, he offered to do whatever he could to help.

Some months later, Emily has decided that now is a good time to go get some new lungs (I’m told they’re 2007’s must-haves) and left her LLTGL partner-in-crime Emma high-and-dry staring down the barrel of a show in 6 weeks time with a whole range of “To Do’s” still “To Be Done”.

So, shining my armour and mounting my steed (yes, my steed!), I fired off an email to Emma gallantly offering my services as Production Manager extraordinaire to fill any gaps she may have.

Now, there must have been some sort of mis-communication here, because Emma and her wonderful, throw-your-hand-in, get-stuck-in, jump-in-the-deep-end husband Brad seem to have developed the mistaken impression that I was actually offering to help them out and do some work.

Clearly, they don’t know me well enough to know that when I offer to help it’s nothing but an empty gesture and what I really mean is I’ll be happy to sit on my rump in bed at home and watch Bill Bailey DVDs and tell people how funny he is.

Still, being the awfully polite person I am, I suddenly felt like it would be terribly improper of me to point out their error, so it looks like I’m on board…

I really don’t know how I get myself into these fixes, but now I’m here, I supposed I’ll just make a fist of it and see what I can’t do to make things run a little smoothly.

Right now there’s all sorts of bits and pieces remaining to be organised, including nailing down who exactly is going to be on the bill.  Through Bill Bailey’s management we’ve aquired a strong line-up of fresh comedians willing to entertain the masses, and we’re still hopeful of getting a few last gasp names to pop along too.

I’ve got my list of To Do’s passed down and am liasing with the venue and management about technical requirements and other such things, as well as sticking my oar in wherever I see opportunity.

It’s looking like it’s going to be a really good evening and, more importantly, is going to go a good way to helping support the LLTGL campaign’s current objectives – of which more at a later date.

Tickets should be on sale within the next week or so and I’ll post with details as soon as they are, but for now if you’re in, around or fancy going to the Mermaid Theatre for a cracking night of stand-up, book out 4th March in your diary and watch this space!