Archives: Day-to-day

Today’s been a bit of an epic day, but quite good, too.  As well as being massively frustrating and trying.  A mix of everything, then, I guess.

It all began at 6am this morning, rolling out of bed to run K down to the train to set her off for her day at uni, followed by a quick (way too quick) nap back at home before wrenching myself from the covers a second time to head down to the station myself and get down to London for a photoshoot for an article being written about Emily and I.  It was actually the quickest and easiest photoshoot I think I’ve ever done, which was nice.  We were in and out in 15 minutes and on our way again.

On the way back home I managed to buy lunch before rushing for the train, which then left 15 minutes late and I realised I’d left the drink I bought in Smiths, meaning I couldn’t eat any of my lunch on the train as I had nothing to take my creon with.  Brilliant.

Getting back to MK fifteen minutes before I was due to start work, I then had to rush home and change before racing across town to the Theatre to work a double shift on the bars for the matinee and evening performances of Carousel.

I arrived on the bars upstairs to discover that all hell had broken loose after the production company belated informed us that Leslie Garrett would not be performing today and they had decided (under considerable pressure from an unimpressed star who was shocked to hear that they’d not been honest with the audience beforehand) that all the customers would get a free cup of coffee and slice of cake for the matinee and a free drink of their choice for the evening performance.

Wednesday matinees are affectionately known in the business as “Grey Days” after the fairly narrow demographic of the audience who were considerably unimpressed with the change in the cast and weren’t afraid to voice their displeasure.  Combined with a terribly worded voucher they had been given from the prod co, they descended on the bars, which had no cake, only to be turned away and sent to the VIP lounge where everything had been laid out.

The problem with being on the bars in a Theatre is that, very frequently, you are the first point of contact for members of the audience, which means that any and all mistakes made by either the Theatre, the production company or anyone else involved with the show inevitably end up being your fault.  They customers latch on to the first person connected with the Theatre and feel free to let loose.  I wouldn’t mind so much if there was something we could actually do about it, or if it was a mistake that we had made, but it very, very rarely is.  Usually it’s the limits of our powers to turn around and apologise and I suppose if the customer wants to vent then we have to take it, but it’s not fun.

Luckily the evening performance went much more cheerily, mostly because the slightly younger audience were much more appreciative of the free booze and programmes they received.  In fact, the vast majority of them didn’t seem overly concerned with the cast change, which meant that for all intents and purposes, they just got a bonus free drink as part of their night out.

The problem with all of the audience being given free drink vouchers, though, is that they then like to use them.  With the house around 85-90% full, you would normally expect to serve 40-50% of those people drinks.  With free drink vouchers, you’re suddenly serving 100% of the audience drinks, plus the extras that they might wish to pay for.  It was hard work. Combined with the fact that they they had earlier in the week cut the interval down from 20 minutes to 15 because the show was running so long (3 hours in total, not including the break), so we had to cram out 40% more drinks in 25% less time than usual.

Suffice it to say that by the end of the night we all felt like we’d be consistently hit over the head with a large hammer very, very hard.  Exhausted and ready for home we were at least kindly acknowledged by the management who allowed us all a drink to take away with us – muchly appreciate by us all.

After three nights and sleeping incredibly poorly, the day did at least serve to put me back on track with decent, deep sleep, so it can’t all be bad.

A couple of weeks agao I started a new writing project with a friend – S of S&S form this blog – launching from an idea written by her other half (erm… S from S&S from this blog…) back in his college days, which is now so long ago we’re all starting to feel a little too old for our liking.

The original script, scribbled out in a school exercise book, has the seeds of a great story in the comedy-horror genre made famous by Shaun of the Dead but plied equally well by recent Brit successes like The Cottage.

We’ve spent the last month or so between the two of us, with input from SB (I suppose the second initial will have to come into it now, since they’re becoming two separate people…) to make sure we weren’t veering too far away from his original intentions, have been hashing out a more detailed and sustainable plot-line and making the characters more rounded to help us create the right level of comedy.

It’s quite a tough project because the premise is pretty ludicrous, but the idea is cracking, which means that it’s really important to get all the “other” elements of the script right so that the audience feels able to buy in to the main idea running through it.  If the comedy is too outlandish, the audience won’t want to go with us, so it’s important that we keep it a close character comedy with just a single, slighty crazy comic element in the middle of the mix.

Today we had our second full-on writing day together.  Both of us had completed short sections of 7-10 pages each and we got our heads together to see how they were working alongside each other and that we were flowing down the same lines according to the plan we’d drawn up.  It’s all looking really good and we spent a bit of time going over the action and dialogue of the sequences we’ve written and seeing if and how it affects the stuff we’re going on to do next.

We’ve come away nicely re-energised for the next stint of writing and have given ourselves another two weeks to get the next pieces written up before we meet again to see how we’re progressing.  If we can keep the pace we’re on at the moment, we should have a completed first draft by the end of November, which would be really, really cool.

Interestingly, just the process of writing with someone else and bouncing ideas around has taught me a huge amount about how to better develop characters and story-arcs, something I think that some of my writing has lacked in the past.  It’s also seemed to click my brain back into “writer’s mode” and set me off thinking about a whole load of other projects I’d like to get cracking on.  I’m not about to try writing two first drafts at the same time, but with ideas fermenting in my head, I think this could be quite a fertile time for my creativity, which is a really nice feeling.

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…

So far this week has been pretty tiring, although I’m actually enjoying it quite a lot.

On top of my usual Sunday session at the Grove Youth Theatre, I went along and did the Tuesday night session, too, as I’m unavailable this weekend as I’m away with Live Life Then Give Life for a weekend of planning and other fun stuff (more on that next week).

Working with the younger groups was certainly challenging, as they’re all from very different backgrounds to the kids who went to the MK Theatre Youth Theatre.  But there’s still something energising about working with youngsters who still have that energy and vitality, not to mention still clinging on to their imaginations in the face of all their school teachers and (often) parents trying to drum it out of them.

There’s nothing sadder to me in modern society than how early children start to lose their imaginations.  Many of us could (and do) jump to blame the whole thing on Xboxes, Wiis, PlayStations and all the rest, but in truth it’s just as much the fault of parents and teachers as it is the computer games and TV industries.

Children who are creative, who day-dream and enjoy their own little fantasy worlds are seen as being behind other children and somehow inferior.  It is celebrated when a child can focus and concentrate on a Maths problem for half-an-hour, but derided if they spend the same half-hour lost in a world of their own creation.

Theatre is the one art form that can really help to encourage, develop and nuture an imagination.  Not only in performing and “play-acting”, but also simply by being part of an audience.  The magic of Theatre is often lost on the majority of the population now – that sense of amazement and wonder which casts a spell over young people seems to ebb away as we grow.  At the pantomimes every year, the adults go along because they want to recapture a little bit of that spirit, but we all know that we only boo the baddie because we know that’s what we’re supposed to do.  For the children, though, they put their whole heart and soul into it – they really mean it when they boo, it’s not simply customary.

It shouldn’t just be every Christmas that children can explore their theatrical imaginations though and it’s not just pantomimes that can engage them.  The beauty of taking children to the theatre is that they are often the least critical audience who will take up a seat in any auditorium.  If they see characters that they know and/or love and can engage with (not always in a physical/vocal sense), they get completely lost in the performance.

More than that, though, theatrical shows give children a chance to develop their imaginations as they can’t present everything that a child may see on TV.  Take something like Noddy or Lazy Town Live – it’s impossible to recreate the look of the TV show, but you can recreate the feel of the show and it up to their imaginations to complete the illusion.

If you find yourself feeling cynical about the rubbish that’s churned out on TV (for old and young alike) or you see you child drifting into dream-less oblivion, pick yourselves  up some tickets to go and see a show and even if you can’t bear the show, watch your little one’s face instead.  I guarantee it’ll be a picture.

I know, I know, I know – it’s been WAY too long since I last updated, but trust me, I’ve been busy.

I will endeavour to find some time over the weekend to give a full and proper account of the, frankly, crazy-busy and pretty momentous events of the last couple of weeks, but I just had to jump on for the last 5 minutes my brain is operating today to shout about Live Life Then Give Life, the award winning charity.

I’ve been somewhat remiss in not talking on here about our recent nomination for a Charity Times Award for Campaigning Team of the Year.  The Charity Times Awards is a prestigious charity-sector awards ceremony that recognises the best in not-for-profit work and those who support chartiable organisations.

Five of our six trustees managed to make it down to the Lancaster Hotel in London last night for the Black Tie dinner at which we were all shocked and delighted to be announced as winners in our catagory.

The judges said in their citation, “This was an outstanding campaign made up of many effective and innovative strands and appraoches, achieveing great sucess.”

We were all amazed to be thought of as the campaigning team of the year, although according to the sponsor there was only ever one winner, which is overwhelming and a great boost for all of us.

We had happily resigned ourselves to making the most of the PR opportunity that being nominated for such a renowned award in only our first year as a charity, so we were all overcome with emotion when we headed up to the stage to collect our awards.

The appalause and good will from the other charities at the ceremony made us realise how well thought of (and how much more well known than we had suspected) Live Life Then Give Life is.

To see Emily, Hal and Jen’s faces as our name was announced (and it’s a picture, let me tell you), check out the video here.

We partied long and hard into the night (although mostly alcohol-free) and came away buzzing.  We have all invested so much personally into this charity since we first got involved with Emily and Emma’s campaign back in 2006 and it’s indescribable what this recognition means to each and every one of us.  We are so aware of all the help we get from our supporters and our advocates, who go out there and tell their stories and help to increase awareness of our desperate need for more donors in this country.

Rest assured, though, we will not be sitting back and feeling chuffed that we’ve done our job now we’ve got an award – if anything, this has motivated each and every one of us to keep ploughing onwards.  In the words of friend, top blogger and independent filmmaking guru, Chris Jones, “Onwards and Upwards”.

Today has been an amazing day.

Some weeks ago, Live Life Then Give Life were invited to an annual service held by the British Organ Donor Society (BODY), who hold an event every September to commemorate the lives of organ donors and those recipients whose lives they saved.

In WImpole Park in Cambridgeshire, they have an avenue of trees, which people can dedicate to loved ones or anonymous donors and every year they dedicate a tree to an organisation as well.  This year, they wanted to dedicate one to Live Life Then Give Life.

I went along with K and Emily to represent the charity and we all knew that it might be an emotional day.  What none of us knew ahead of time was just how amazing a day it would be and what a wonderful feeling it was to be there.

The service is almost impossible to describe.  In a tiny church in the grounds of Wimpole Hall, the Rector leads a service which frequently crosses boundaries between memorial, thanksgiving and celebration.  There are donor families there, people who have lost loved one but took the immensly difficult decision to allow their organs to be used, and there are recipients, like Emily and I, and their families, there to celebrate and give thanks to the people they never knew and will never know who gave life where it was ebbing away.

There is a part of the service at which anyone may stand up and talk and tell their story, or simply say a quick thank you.  To hear the contrast of stories between donor families and recipients is stark and unsettling, but at the same time it’s uplifting to see the strength that the donor families take in the knowledge that they’ve helped someone to carry on.  The gratitude of the recipients shines through more brightly than any lightbulb every could and the strength that each side takes from the other makes it a wonderfully cathartic, if hugely emotional, experience.

As a charity, five of Live Life Then Give Life’s 5 trustees owe their lives to our amazing donors, so it was nothing short of an honour to be invited to the day and to receive a tree from the Society.  As I stood at the front of the church to talk about us and what we do, to thank BODY for their gift and to thank our donors for what they have done for us, I got a strong sense of closure with my donor.

I know nothing of my donor, or their family, except that when my family were celebrating their greatest Christmas, they were enduring their worst.  I know that I will never know my donor and I will never be able to visit their grave to thank them for what they’ve given me.  But now there is a tree dedicated to Live Life Then Give Life and now that I know there is a place where donors are commemorated, I feel like I have a place to visit to give thanks, a place I can go to commune with my donor and let them know all that I’m doing to make the most of the new life they’ve given me.

Next  year is BODY’s 25th anniversary as a charity and I sincerely hope that I can be there for the service again, but also that I can pack the church with donor families, recipients and their families and anyone touched by organ donation, because being in the presence of some of those amazing people yesterday was one of the most remarkable and moving experiences of my life.

Live Life Then Give Life continued our assault on the corridors of power today as Emily and I went along to a lunchtime lecture at the Department of Health to talk about organ donation and the reasons behind it.

The talk was ostensibly to let the civil servants know the kind of policy issues they would have to address regarding organ donation in the coming months and years and was given by a lovely lady called Triona Norman, who had attended our Treasury talk and seen how great we were(!).  Emily and I, along with a friend from the Treasury, went along to give personal experiences and help to illustrate the difference a trannsplant can make.

It was also incredibly useful because we got the chance to meet and chat to Chris Rudge who is the new National Clinical Director for Transplant, otherwise known as the Transplant Tsar, who is in charge of implementing the changes recommended by the Organ Donor Taskforce report from last September.

Apart from the obvious bonuses of meeting and getting to know the Head Dude of transplant in the UK, it was fascinating to hear him talk and address many of the issues and common questions people have about organ donation and transplant.

As a national transplant charity, we often find that the same questions are fired at us constantly, mostly regarding our relation to the Spanish system.  It has been my personal position and the position of the charity as a whole, to point out to people that the Spanish system doesn’t excel simply because they follow a system of presumed consent, but rather because they have ensured a significant investment in the infrastructure needed for transplants, including staff training and – most significantly – a much larger number of intensive care beds than we have.

This is significant because the vast majority of organ donors die in intensive care, which means the more beds we have, the larger the pool of potential organ donors.  Interestingly, Chris Rudge also said that only around 20% of organ donors are victims of road traffic accidents.  Much more commonly, the cause of death is inter-cranial bleeding, more commonly known as a stroke, which can affect many young people as well as old.

The most significant part of Chris’ talk, however, was his reaction to the introduction of presumed consent. He is very keen to set up an investigation to see whether or not an Opt-Out system would actually increase the donor rate, or if other factors are more significant.  This is a breath of fresh air to me, as I’ve been saying since the recommendations came out that it’s not a given that presumed consent would increase the number of transplants.  It may increase the potential donor pool, but that’s not the same thing at all.

It’s great to get invited to talk at these events, because both Emily and I have learned from experience that making the issues personal makes and enormous difference in driving the points home to people.  But this was more of a bonus than usual, thanks to the chance to meet and chat with Chris Rudge and some of the people who actually have the power to make a difference.

Here’s a mini-transcript from a telephone conversation my dad had today with AA Travel Insurance regarding our current family cover:

DAD: “I wanted to check on cover because we have a “close relative” (our son, actually) who had a double lung transplant less than a year ago”

SP*: “A lung transplant?”

DAD: “Yes”

SP: “Was he hospitalized for the procedure?”

*Special Person

I spent most of this afternoon in a meeting with Emma and Emily, two of my fellow Trustees of Live Life Then Give Life.  I say fellow Trustees, what I actually mean is my superiors – as Chairman and Vice-Chairman of the charity respectively, they’re far more important than me.

Anyhoo, we spent a good few hours pouring over the construction of a firm business plan for the charity, something that Emma has been pushing for us to do for an age, but which all of the Trustees have been unfortunately lax in organising and offering in-put for.  I’ve been one of the worst offenders, knowing how important it is, but never setting aside the time to think about it properly.

Being locked in a room with the girls made us focus properly on the bits of the charity we needed to focus on and work out our strengths and weaknesses, where we’re good and where we can improve.  It also gave us a chance to analyse where we can best fit in with the rest of the transplant charities in the UK at the moment.

Obviously, still being very much in the planning stage (the other three Trustees have to look at and approve our ideas, for starters), I can’t really go into a lot of detail, except to say that I think we have finally identified what we do best of all and are now hoping to commit ourselves to rolling it out as our “thing” which we can use to promote organ donation in this country without treading on the toes of everyone else in the Tx community.

One of the key things we have identified with Live Life Then Give Life is our fantastic standing and relationships with people in the transplant community, both transplant professionals, people affected by transplants and other charities themselves.  Because of this we all saw it as being vital that we strive not to replicate, but to complement other people’s work.

Too often in the charity sector you see organisations compete with each other for the same people’s cash, the same people’s time and the same pots of money and in the end it can be counterr-productive.  Live Life Then Give Life’s core aims are to promote organ donation in the UK, so if working alongside other charities suits a project best, that’s what we’ll do and if we can see that another charity does something better than us, we’re not going to try to replicate their work, but attempt to support them however we can to achieve the same goals that we are.

So the plan is coming together and the potential for Live Life Then Give Life as a charity is huge.  I can’t wait to be part of it.

This week we have been rudely invaded by the real world.  After 10 months of existing in a perfect little post-transplant bubble, the time has come to look at things that people out in the big wide beyond have to spend time looking at.

With K off to uni in 3 weeks and counting, she is, naturally, going to have to give up work.  The full-time commitment of the course, coupled with the 3-hour daily commute is going to sap every last bit of energy she has, making weekends a time for rest and recovery and not for the usual kind of student money-making that normally earns the bookworms a crust.

So it falls on me to start winning the bread for the house hold.  It’s a very strange position to be in, seeing as I haven’t been in paid employment since I left Northampton Theatres in April 2005, nearly three-and-a-half years ago.

One thing I’ve learned from friend-of-the-blog Emily is that returning straight into a ful-time job post-transplant is a bit of a no-no.  Although I now have more energy than I think I’ve ever had in my life (barring, maybe, my early years), that doesn’t automatically equate to being able to put up with the stamina required for a full-time job and the stresses and strains that go along with that.

Instead, I’m going to be looking for something smaller and more part-time, but then I hit the thorny issue of benefits.

At the moment, I’m still covered by incapacity benefits because I’ve been under doctor’s orders not to work.  The idea of incap is that in order to help you return to work, you are allowed to do a certain number of hours of paid work per week without incurring penalties on your benefits.  The trouble with incap is that once you pass the 16-hours-per-week threshold, you lose everything – there is no middle ground.

And it’s not just the incap that you lose.  Incap comes tied in with an entitlement to various other benefits including Housing Benefit and Council Tax Benefit, which basically means my rent and council tax are paid for me as my income isn’t high enough to cover them.

So, all-in-all, the loss of benefit will cost us in the region of £800 per month.  That’s an enormous gap to try to cover between working 16 hours per week on benefits and finding the rest of the money once you cross that line.  In effect, it means that you are forced to jump rom 16 hours per-week all the way up to a full-time 30-40 hour week with no middle ground and no safety net, beyond returning to incapacity benefit.

It sounds easy enough to try out full-time work and use the Incap as a fall-back option if you can’t cope, but that’s forgetting the psychological impact of going back to “illness”.  Everyone I know post-transplant has faught an incredible battle to get themselves back on their feat and rebuild new lives in the wake of a truly life-changing blessing.  What all that effort means, however, is that none of us want to return to the perception of “illness” that dogged us for years both before and initially post-transplant.

So the search for so-called “gainful” employment begins.  Where am I going to end up, who knows?  As long as it pays the bills, I have to be happy with it, but I would much rather have an opportunity to do the things I want to do with writing, filmmaking and educating than have to sit in a call-centre 37-hours a week.  Hopefully, the 16 hours I need to start off with will enable me to carry on with my personal projects and find a way to make them pay.

Watch this space!