Archives: Difficulties

We rouse ourselves from slumber around half-10 and wake ourselves up, throw on some clothes and head out to the flicks to catch Inkheart, which is now in its last week in cinemas, if the frequency of timings are anything to go by (which is usually is).

It’s a great little film, I guessing far-underrated from it’s lack of fanfare, but if I’d seen it earlier I’d be encouraging everyone I could to go see it. Technically it’s a kids film, but is much more entertaining than any of the Harry Potters and has a cast to rival the series, too, with Brendan Fraser taking the lead in a not-rubbish kids film for once, joined and backed up by an unbelievable array of top talent including Helen Mirren, Jim Broadbent, Paul Bettany and the always-immaculately brilliant Andy Serkis, who deserves to be much more well-known than is.

The tale is a classic modern fairytale of “Silvertongues” – people who, when they read words from books aloud make the characters and images from the page come to life in the real world.

It’s proper fairytale stuff, too, all adventure and danger, scares and baddies you could almost boo at, but all pulled off with a deft touch which steers the cast away from the usual, over-the-top ham into more natural but enjoyable performances.

It’s also pitched perfectly for all audiences – there’s mystery and suspense for the girls, monsters and adventure for the boys and there’s enough of everything in there, artfully pulled off, to keep any adults in it with their kids or even – as in our case – on their own. It’s a true Christmas cracker and I wish I’d seen it earlier so that a) I could see it again and b) tell everyone to go and see it.

When we get out of the flick, I take K over to my ‘rents to peep out the photo collections still strewn on the table and we go through various packets of photos, me filling K in on all the cute little-me stories as well as the really-grumpy me stories and pics.

Mum and Dad get home from golf and tell me I have boxes upstairs from the loft to go through, so K and I hit the upstairs study-cum-storeroom and settle into box-exploring, which doesn’t take very long as we rapidly discover that all my boxes have obviously been gone-through when I moved out and I’d cleared the house of all my rubbish, chuck the keepers up in the loft in the very boxes that have just been retrieved. We move a bit of stuff between boxes and empty one that’s falling apart before calling it a day and heading home.

We get back and for the first time since Christmas Eve I jump on my computer and check up email. Disappointingly, there’s nothing remotely interesting there at all, so I’m through it very quickly.

I head into the kitchen and wash up some mugs as well as rinsing our steamer through so I can use it. I get on with cooking a proper, home-cooked meal for the first time in a good couple of weeks, prepping some roasties and chicken, then chopping veg up. I cook it all up and serve to a tired but appreciative K.

I wash up and we settle onto the sofa to watch The Wizard of Oz, a film I’ve only ever seen bits and pieces of. I’m carrying another wapping headache, though and after less than an hour I can’t deal with it any more and have to call it quits.

We hit the sack and I fall asleep in a hurry, but forget as I do so that falling asleep before 10pm means I always wake up around 11-12 and can’t sleep again, which is exactly what I do.

I get up and chuck some random late-night TV on while I sit and update my blog from Christmas most of the night, then throw on Rocky Balboa when I’m done, watching through the extras before putting the feature on.

Christmas morning starts early-ish (although later than anyone with small children, I’ll wager) at around 8.30 when I wake to see K staring at me eagerly waiting for me to wake up to start our day. K is somewhat like a small child at Christmas, being very excitable and extremely cute.

We lay in bed and open our “stockings” and the first signs that I’m spending my first Christmas away from my family creep in – our family use hanging stockings (or football socks at a push) whereas K’s family use small bags to fit the stocking presents in, meaning you can fit bigger and – frankly – cooler presents in. No more packs of pencils, chocolate coins and a satsuma (although I did miss the fruit), in come books, DVDs and other enjoyables. But it’s still a bit odd.

We get up and head downstairs, greeting K’s Ma and Pa with the usual Merry Christmases and such before settling into a gorgeous cooked breakfast with the customary bucks fizz. I usually skip the booze, but this morning I join in and it’s not as horrible as I remember it.

The rest of the morning is spent helping sort out the necessary bits and pieces – clearing and laying the table, wrapping the family-custom table presents for everyone and sorting out the last-minute bits and pieces for cooking.

Mid-morning I get a call from Mum and Dad, who are in Ipswich with my Godfather, just before I’m about to phone them. They’ve just heard from
my bro and are happy that he’s managed to make it to a phone (or at least to dig out the Sat phone). He’s had a pretty rubbish Christmas Eve, but is looking forward to the carefully saved Pot Noodles for Christmas dinner.

At the end of the morning, Bro 2.2 arrives with family in two, one of whom is suffering from a heavy cold, which means I’m forced to keep an unfestive distance. We crack our first round of presents with them (another difference from my gang, who would have torn into them all by now) and appreciation is shared all round.

They head off after a while so they can get their eldest onto his Moto-cross bike which Father Christmas (and the Birthday Fairy) brought him before dark.

We continue chilling/working on the room/table while Mama D cooks up a storm in the kitchen. Mid-afternoon Bro 2.1 arrives with family in tow and we sit down to a cracking Christmas feast.

Post-dinner we all repair to the lounge to tear into our gifts and celebrate in style. The kids, by this point, are starting to feel their 5am wake-up and getting sleepy, but they behave impeccably, if somewhat quieter than usual.

Once they’ve all gone and we’ve cleared the detritus, we settle in front of the telly to veg out and try not to fall asleep before a sensible time in the evening. We watch the new Wallace and Gromit and the Xmas Strictly then end up sitting through most of a random out-takes program before finally dragging ourselves up to our Christmas bed around 10.30pm.

It’s always weird seeing what other families do at Christmas and today was a little on the odd side, but at the same time it was lovely to do things a little differently for a change.

Just a day to go till the big 2008th birthday of little baby J, the dude that started it all, in more ways than one. Also the dude that finished it all, which is odd. As well as being the dude that landed in the middle of it all. All things to all people, I guess.

We were up, again, ridiculously early at 8am (it’s funny how your perception of early changes when you aren’t being forced into 6am starts) to get ourselves ready for the shift across to Deanshanger and all of K’s immediate family.

My first job, irritatingly, is to head over to the other side of MK to fetch K’s present, which I’ve been messed about on first by the initial website I ordered from, then by the courier company I’d paid extra to get delivery to me before Christmas as I didn’t want this precise situation to ensue. Still, it’s not rocket science to get sorted and I’m home half-an-hour later in time to wake K with a cuppa and kick her (lovingly) out from under the covers.

We shoot across to K’s GP to get her her second Hep B jab, a necessity brought on by the likelihood of her working in dodgy environments within the NHS (and that’s just the offices), and she also managed to wangle a ‘flu jab that had meant to have been done much, much earlier, but better late than never, I suppose.

I giggled, not very kindly, because I’d had a ‘flu jab earlier in the year and not been able to sleep on the arm that I got the shot in, and now K had managed to get both arms shot in on the same day – tonight was going to be fun!

We scrambled back home to finish off our wrapping and packing – well, I had to finish (read: do) my wrapping, since K is far more organised than I am and had done all of ours and all of hers, but couldn’t really be left with mine to do for her as it’s somewhat prone to spoiling the surprise.

All set for a cracking Chrimbo, we shoot to bro number 2’s (or is that 2.2, or 2.1 – how do you count twins?) place to hang out with the kids and for K to attempt to work them into a pre-Father Chrismas-visit frenzy, which she ends up proving unable to do thanks to their already way over heightened excitement levels as it is.

We chill with them for a while until they have to go out for festive fun in the neighbourhood and head up to her ‘rents place to unpack and chillax for the evening. On the way, we pass them walking down to Bro No 1’s new house that they moved into last weekend (awesome timing on their part, eh?). We tell them to jump in the car and we whizz round to the new place and peep it out.

It has to be said it’s absolutely gorgeous – the first new-build I’ve seen in a long while with large, airy rooms, a warm, homely feel and a garden larger than a postage stamp. It may be that, due to work movements and such, they only end up being there for six months (they’re renting it while they assess their options and settle into new routines), but it’s a great place to be and more handy for the kids’ school, too, but still in the village.

We hang out there for a while, playing board games and – for the first time in donkey’s years – marbles with the kids until we realise we’d be better off out of their hair as the matriarch has to not only prepare for the imminent Santa-arrival, but also cope with all the usualy 3-day-old move unpacking and sorting.

Back at the ‘rents, we show K’s mum a short film a friend of mine made, which has her in tears and makes K feel terrible and me feel worse because K at least had the excuse that she didn’t realise it would upset her mum, whereas I knew full well it’s too sad a movie not to illicit tears from her.

While we crack on with Christmas prep, finishing off bits of wrapping and peeling sprouts, we are invited back down to bro 2.2’s place for a beer, which I opt not to go for so I can drive K around the village and stop the cold going to her legs, which would pretty much ruin the night for her.

After catching the Christmas ep of Gavin and Stacey, the first ever Gav ep that’s made me laugh out loud, we head back up to the ‘rents and grab D to take her with us (or for her to take us) to the midnight service at the village church.

Midnight is a traditional thing for my family to do together on Christmas eve whenever we’re at home and I’d not managed to make it thanks to illness for something approaching three years if my memory serves. That, combined with not having my ‘rents around and thinking of my bro out in the field in some unknown part of the world got me really and truly upset – and in a church full of people I don’t know.

After the service, I’m feeling very reflective and worried about my bro and the situation he’s in – which I have to acknowledge I know almost nothing of, for security and operational reasons. I drop a text to Mum and Dad to tell the I miss them and I go to bed with a heart far too heavy for the festive season.

Today was both an emminently enjoyable day and a massively frsutrating one.

A while back, as you’ll no doubt have noticed from the banner on the right of the page here (unless you’re reading this through in the archives in the middle of 2011), I signed myself up to take on this years doitforcharity.com Santa Run through Greenwich park.

At the time – about 7 weeks before the run – I thought that a small, fun 5k could be just the right way to ease myself into the physical challenges I’ve set myself for the next couple of years.  I’ve developed a bit of a master plan that I’m not going to la out on here because I’ll only fall foul of it at some point and feel lousy, but suffice to say that a 5k before Christmas seemed to be a good way of easing myself in.

Then came my port op at the end of last month and truly knocked me back.  Not physically – or at least not in my chest – but the pain in my shoulder and the general disablement it brought caused me to have to stop running.  I figured that even having missed a week’s training I’d still be good for the run, but it appears that my shoulder protests too much.

Any kind of movement of the shoulder, particularly harsh, juddering, running-style movement, has been really painful and – mindful of the fact that I’d have to operate a car all the way home after the event – I had to take the disappointing decision to “drop out” of the run.  I say drop out, but that’s really not true, I just ended up walking it instead of running it.

I was, frankly, really bummed about it the week leading up to it – the whole point of the exercise had been to give myself a physical challenge to round of what’s been an amazing twelve months – but as people kept pointing out to me, it’s a big step forward.  I just wasn’t so sure it was, after all, I’ve done a lot of walking since my op, not least back in October when I not only walked 5k, but did it with a video camera on my shoulder to shoot Nelly’s World’s Biggest Walk.

It was only once I was actually walking around the park, breathing in the freezing cold but deliciously crisp winter morning’s air that I realised what a difference the last year has made.  At this point 12 months ago, I was just learning to wobble around the ward on two very over-sized legs in between bouts of dialysis to keep everything under control and on course for a Christmas release, a date which seemed to be looming without signs of improvement.  To be wandering freely through the park today, holding conversations and pushing Nelly up a really steep hill (until her family came to a perfectly-timed rescue) is a miracle beyond words.

I feel like I spend every post on here at the moment in a moment of thanks to my donor and their family, but if it wasn’t for them I’d never have had the chance to do all of that.  And I’d never have seen my Great Cousin born last night, either – so thank you all, whoever you are.

So no one actually explained to me that having your shoulder sliced open actually causes a modicum of pain.  Who’da thought?

Most of this week since Wednesday has thus been a write-off, what with the lack of ability to move around and use the arm in question and the slow-down caused by the Tramadol to eliminate the pain.  Still, I have to say it’s been nice to actually have some enforced down-time and not spend most of the days at my desk.

The time off has actually helped me to develop a new idea I’ve had for a screenplay I want to start work on, which is always welcome.  I’ve actually had the idea running around my head for a while, but it’s just been cementing itself a little more in my brain to the point where I feel I can start shaping it into something that can work.

With regards to anything else in life at the moment, I don’t really have a lot to say after three or four days of doing nothing, so this is – I guess – a fairly pointless blog, but is probably more of an attempt to atone for my lack of blogging over the previous couple of weeks.

Oh, and if you’re a Batman fan and you fancy a giggle, check these guys out.  Very funny.

One year ago, precise to the nearest hour (rounded up), I sat as I do now sitting up in the middle of the night while all about me are sleeping.  That night, 366 days ago (leap year, before you correct me), I wrote:

“I can only hope that [this new low] marks the nadir of my fortunes and that things are all-the-way upwards from here.”

as part of this post.  Little could I know that within 24 hours everything would have changed and that what I was writing then would prove to be so eminently prophetic.

I don’t know quite why I am unable to sleep this time – I know, thankfully, that it’s nothing to do with the intense physical struggle I was fighting a year ago, nor is it a concern about how imminent my death may prove to be – but I suspect that it’s the knowledge that a year ago today marked the point at which one person’s life ended and gave me the second chance I had craved.

I’ve never really struggled with the idea that for organ donation to be viable, the donor must be deceased – certainly in my case.  But something about an approaching anniversary makes you re-assess things you take for granted.  I suppose it’s why New Year brings so many resolutions.

More than that, though, I suspect it is the knowledge that over the last 12 months I’ve seen two friends lose their lives in the way I always imagined I’d lose mine and – just this week – a very close friend lost his 14-year-old son.  Standing on their doorstep to offer our support and help in any way we could, their grief was over-whelming.

I have been much blessed in my life, not least in that I have never lost anyone of my immediate family at an age where I was aware of the pain it caused all those close to me.  I’ve never fully appreciated the wrench, the true sickness inside, of losing a member of your family.  Of course I remember my Nana – just barely – and my Granddad, but I have no concept of their deaths when I was 3- and 5-years-old.  I remember more clearly the death of my Grandmother two years later, but only in as much as that Daddy was sad and I wasn’t allowed to go to the funeral.

Never before have I touched – or been touched – by such heavy, all-enveloping grief that weighs on the family like a leaden cloud, which rains down tears of desperation and confusion without any seeming hope of the oft-fated silver lining.  A grief which swallows people up and prevents them from seeing anything around them, or even in front of them.

It occurred to me, sometime after that doorstep encounter, that while my family and I were rushing to hospital a year ago this evening, another family were in the very first stages of just such an overwhelming feeling of loss and despair.  And now, one year on, they must be thinking back to that fateful day and wondering if anything more could have been done.

As I’ve documented on here previously, I know nothing of my donor, nor their family.  I can only imagine the circumstances under which they came to be in a position to save my life and mere conjecture is all I can muster towards how they dealt with it at the time.

As I prepare to celebrate the first of my second birthdays with a party on Thursday night, I am overcome with the thought of the loss someone has had to suffer for me to be here.  All I want is to know that whoever my donor may have been, they are smiling down on me now and are proud of what I have achieved since they gave me a second chance.

I want to know that they believe I am worthy of the gift they have given me, that I have done my best to make the very most of the lungs they bequeathed to me and that if they could, they would be telling the ones they left behind that I am fit to carry on in their stead.

19 November will live forever in my mind as the day my donor died, quite separate from 20th November – the day my new life began.  And I’m grateful to have the two separate days to honour – the one to mourn the passing of the person who saved my life and the second to give thanks for the life I’ve been given and to surround myself with my family and friends who make it all worthwhile and make me feel worthy.

I heard a quote from Nietsche on the radio today,

‘He that has a “why” to live can deal with almost any “how”‘

With the knowledge of the sacrifice that was made in my name and a determination to be the best I can be, “how” I live will never be an unconquerable hurdle, merely a method of honouring the “why”.

At this very moment right now, I was supposed to be standing on a sunny but slightly chilly street in the middle of Bletchley shooting my first short film as a director since 2003.  Instead, I’m sitting at home in a T-shirt (and jeans, you mucky-minded fellows) and writing this.

The course of true love never did run smooth, someone once kind of wrote (gotta hate people who paraphrase the greats, haven’t you?), and the course of navigating my way to and through my first love – film – is proving exceedingly bumpy.

The film that was scheduled for this weekend is a script I’m really proud of that I’m confident I can turn into a brilliant little film.  Sadly, although it’s been in the pipeline for months, it all fell-apart mid-week when the actress playing one of the two leads (in fact, one of the two parts) pulled out due to commitments early next week.

I spent a furious few days scrabbling around trying to find a replacement before, in a phone call with the producer on Thursday night, finally giving up the ghost and conceding that we’re better off to postpone the shoot until we can find the right girl, not just any girl, to fill the role.

It has caused me a lot of pain over the last couple of days to come so close to shooting and then see it slip away, but at least I’d not spent any money on it.  I’m in a difficult kind of limbo right now where I know in myself that I have the talent to direct, but I also know that to all appearances outside my own head I have nothing at all to show for it.  Let’s face it, no one wants to give a job to someone who has nothing to demonstrate that they are capable in any way whatsoever.  No matter how much I bullsh*t or try to talk my way through things, without demonstrable evidence to show people, there’s no reason for anyone to have any confidence in me.

Which is why it was so important to me to get at least this first short under my belt and then move on to other things.  Sadly, that’s not to be, for now.

I’ve spent a good couple of days moping about this now, but yesterday I managed to pick myself up and start looking at the other projects I’ve got going, which had somewhat fallen by the wayside in the build up to the One Under shoot.  This succeeded at least in shifting my brain from mope-mode to active-mode, which is always a good thing.

Then a funny thing happened.  Feeling restless and couped up this morning, I wandered down to the corner Tesco to pick up some bits and pieces (milk for tea being the most important) and as I was walking back up the hill to the flat, I flashed back to the time back in January/February when I first walked down to the shop having recently returned home from hospital and then my parents’ and discovering the true capabilities of my new puffers.

Walking back up the hill today was immeasurably easier and less hard work than that time all those months ago and it served to show me – and remind me – just how far I’ve come in the last 12 months.

Sure, I’ve not managed to make a film in my first 12 months, as had been my hope, but far from being the enormous downer that I’d raised it up to be, I realised that with the new lungs I’ve got and the new chance at life I’m enjoying, I need to focus on the bigger picture just as much.  To never lose site of the fact that this time last year I wasn’t even well enough to be considering making a film, let alone being disappointed that it all fell through at the last minute.

Filmmaking is undoubtedly important to me and it’s 100% what I want to do with myself.  There will be more opportunities to come, at first of my own making and then, hopefully, at the behest of others who recognise what I’m capable of.  Until then, it’s just a case of sitting back and thanking God for the gift I’ve been given and the life I can lead now.

The choices are all mine right now, and that includes my attitude.  So away with the moping and welcome the joy of expectation.

Ok, so I know I’m WAY behind on this at the moment, but I will endeavour to update a few of the days from last week sometime tomorrow or maybe today when I get back from my final shift at the Theatre – yes, I’m leaving.

It’s been a great week and I’ve got through a lot of cool stuff, but right now I’m in a mini-actress crisis for the short I’m shooting over the weekend.  I’ve now had two actresses attach themselves then bow out, through no fault of their own, but it’s left me a little high-and-dry with a shoot scheduled for this Saturday and Sunday.

Did some camera tests on Monday, which was great and I’ll try to blog about later.

The most significant thing is, ironically, something I can’t talk about at the moment, but I have the potential opportunity to produce one of the most exciting projects – no, scratch that, THE most exciting project – that has ever wandered through my vision.

I honestly can’t say anything about it now as I’m in really early negotiations and it could easily (too easily for my liking) all fall apart and not happen, so all I’ll say is that it’s a major documentary on an event of next year.

I promise I’ll be back to fill you in on the last week or so soon.

I couldn’t sleep tonight, so I got myself up to check my emails, which have been neglected in the flurry of activity that included a double-shift at the Theatre today, and received a piece of news I’ve been dreading for a while.

An old friend of mine from the CF community lost her fight after a huge battle tonight.  She’d been in intensive care under sedation for a while and tonight she could no longer keep up the battle.

For reasons I found hard to fathom and now even harder to accept, her death has hit me so much harder than I ever thought it would.

Earlier this year, she gave birth to a son she’s wanted all of her life – a life which even ignoring CF has been tempestuous to say the least.  When she announced she was pregnant, I was really, really angry.  Discounting the numerous and serious risks posed to any mother with CF bearing a child, I felt it was a supremely selfish action to fulfill her own ideals without considering whether or not it was in the best interests of a child who could be left without a mother.

Hearing of her death tonight, all I’ve been able to think about is that I’ve not spoken to her in over a year, such was the strength of my feeling.

But you know what?  Who am I to judge?  Who am I to say whether someone should do the things they want to do, whether it’s irresponsible, inadvisable or selfish?  It’s not my place to suggest any of those things and it’s even more upsetting that I’ve let it cause such a rift.

I never even expressed my feelings to her – I never told her my opinions.  Why?  I honestly don’t know.  I guess I didn’t want to seem judgemental or to upset her, but surely I should have taken that as a warning sign that my “opinions” were unjustified and, frankly, just plain wrong.

“Life is for living” is the motto of another good friend of mine and we should all be living the life we want to live.  If I’ve learned one thing from my struggles over the last few years, it’s that the cliché of precious life encouraging a “live for the day” attitude is absolutely true.

I can’t explain the depth of regret I feel for not reaching out to T since the birth of her son, for not dropping the grudge or whatever you wish to call it.  For not making the effort to see if she needed my support, or even simply sending my congratulations.

Parenthood for PWCF is a very emotive subject and I’m all too aware that this post may well upset a few people.  But it’s something I feel a desperate need to explain, as it’s made me realise how wrong I have been and how incorrect it is of me to stand in judgement of the way other people live their lives.  I’ve always prided myself on being open, honest and – ironically – non-judgmental, but T’s death has shown me how I gloss over the cracks I don’t wish to see.

In a way, I feel I deserve the ire that’s bound to come my way – it would be, I suppose, a form of catharsis, helping me cement the knowledge that I should have kept a closer check on myself and remind me for the future that nothing is worth losing a friendship over and certainly not something that’s based on “opinions” or “feelings”.

Tor, I wish I could have said all of this to you.  I wish I could have sat down with you, laughed and giggled again, met E and L and told you how sorry I was that I let this get in the way.  I wish I could take back the last 18 months and keep in touch, share your joy in motherhood and see your smiling face again.

All I hope now is that, somewhere, you can read this and hear my prayers and find it in yourself to offer me forgiveness.  When I come up there to join you, the first round’s on me.

No, b*llocks to that – they’re all on me.

Breath easy, angel, smile down on us all.

It’s been an absolutely manic last couple of weeks, I literally haven’t had more than about an hour to myself in a single day since, well, actually, I honestly couldn’t tell you without looking back through my diary.

Suffice to say it’s been extremely hectic, but pretty good, too, I have to say.

Last weekend was spent with the Live Life Then Give Life gang, hashing out our plans for the next couple of years.  It’s a bizarre feeling to be mapping out plans that I actually believe I have a chance of being part of.  I’ve been so used to limiting my planning no further ahead than the next few weeks or couple of months, but now I find myself looking further and further into the future.  I have often helped people plan for things in the future – I’ve certainly helped Emma and Emily with it before, as I also did with K’s uni application – but I never really joined in with the expectation that I’d ever be a part of it.

Now things are looking brighter and brighter and my horizons are stretching further and further away.  It has just occurred to me that for the first time ever, I think, I’ve stopped worrying about whether or not I’m going to be around for things.  My cousin is just 6 weeks away from the birth of his first child and this time last year and for a good while before that, just the news of the pregnancy would have set me off wondering whether I’d ever get to see Baby P or not.  Sitting on the sofa tapping away now, I realise that the thought of not being around hadn’t even occurred to me up until now.  I guess this is what “normal” life is like!

Anyway, that’s the last couple of weeks.  Today was different again, being as I was engaged to speak at two different events in one day, both for the CF Trust.

First off, was back in an old haunt – the Mermaid Theatre (sorry, Conference and Events Centre) in Puddle Dock near Blackfriars, the very same Mermaid that supplied the venue for the enormously successful Laughter for Life event way back in February/March last year (for some reason I can never remember when it was without looking it up).

The event was a Parents and Carers conference that the Trust had laid on, this time for parents of teenagers following their enormously successful Under-12s conference previously.  I was engaged to speak, rather oddly for me, with my dad, which threw up all sorts of weirdness around having to “plan” what we were going to say.  Anyone who’s ever been to see me speak knows that generally, I just stand up and ramble for 10-15 minutes, but this time it was a joint presentation with Dad on teenage rebellion which was to last 30 minutes.  Nightmare.

Actually, it all went rather well.  The planing process was interesting in and of itself, sitting talking to Mum and Dad about how they dealt with the various ways I found to do myself a mischief back in the glory days of the 1990s.  I clearly put them through a great deal of angst through my teens, even though I don’t consider myself to have been a massively rebellious teenager (I’ve certainly come across many more people with CF who were far worse).

The speech went fantastically, though – we worked very well together as a team and managed to both entertain and inform the attendees, who seemed to spend most of the half-hour slot nodding in tacit agreement with everything Dad said about my various misdemeanors and rebellions.  Glad it helped.

Once that was over and we’d done a quick Q&A panel with the afternoon’s other speakers and spent some time chatting individually to some parents who came up to address specific points with us, it was then time to dith the grey one and for K and I to hop back in the car and head North up the M11 to Bishop Stortford, or there abouts.

One of the regional fundraising managers for the Trust had helped put on a ball for a couple with a teenage daughter with CF and had asked me to come and speak.  The very same Trust-lady who’d had me along to the Press Ball in Ipswich earlier in the summer, in fact.

The night was amazing – you’d have been hard pressed to find any hint of a credit crunch among the 150-strong crowd, who managed to raise by way of pledges and auction bids a total of £43,000.  Phenominal.

I was, to be honest, pretty diappointed with my speech.  The afternoon had taken so much planing I’d frankly neglected the evening’s event and didn’t allow myself sufficient time on the night to prepare myself properly and go over what I wanted to say and do.  That being said, I still received the usual praise from the people I spoke to, but I wasn’t pleased with myself for it.  Must do better next time, that’s how I’ve marked my report.

Still, it’s been a great day and I’ve enjoyed both events greatly.  The CF Trust has offered me so much advice and support for so long and through such tough times that it’s really important to me to continue to do whatever I can to help them and to offer, if I can, some crumbs of comfort or advice to people who may be struggling now.

Someone suggested this weekend that maybe I should think about getting myself on the after-dinner speaking circuit, which got me thinking.  If I was touring the country being paid for my time and talking to groups of business people for inspiration and the like, would I be as good at it as I am at the moment?  Is it the drive to inform and the will to get people to pledge ever-important donations for the work of the Trust or the transplant community that makes the speeches and talks what they are?  Would paid-for talks be able to engender the same passion and commitment?  I honestly don’t know.  Mind you, it can’t hurt to try…