Archives: Family

Haven’t been up to a whole heap today, but got incredibly excited this evening when I got a reply to an enquiry on my cousin’s health introducing Sebastian George Phillips to the world.

(That’s not to say I didn’t know he was due, which is kind of how the above sentence reads back, actually.  In fact, the text was checking on Baby Mama’s state of annoyance/concern/frustration/happiness at being nearly 2 weeks overdue).

7lbs 14oz at just before 9pm this evening I became another Great Cousin.  Obviously I’m already great, but now I’m Great again!

Congrats, guys – many happy years of fun and frolics with the littl’un.

For most people who know me and have ever had any kind of a discussion of musicals with me, you’ll be well aware, no doubt, of my “issues” with Joseph and his Amazing Technicolour Dreamcoat (which, apparently, is a registered trademark, according to the writing on the back wall of the set…).

I think the best description of my attitude towards Joseph is “jaded”.  Having worked at Milton Keynes Theatre – one of the country’s biggest receiving houses – for nearly seven years, on and off, I have seen Joseph pass through, in one incarnation or another, five or six times.  It’s a great, vibrant, fun show, but after the third or fourth year, having seen the comings and goings, the shabby sets and sometimes dodgy backing performers, you can get a little tired of it.

Which is why sitting in the audience of the Adelphi on the Strand last night I felt a tremor of fear rippling through me.  Lee Mead was a classmate of my cousin’s at a local drama school in Southend way back in the day, so they have been following his progress carefully since he first popped up on the BBC’s show about the show’s lead.  I have to say he was always a clear winner of that, so I figured that the show must be worth going to see to find out if I was right or not.

In addition (and probably more importantly), K is possibly the only person in the world who loves Joseph so much she not only knows it word for word, but when we was still single-figured in age she managed to wear out the tape of the original London cast recording with Jason Donovan, and yet has NEVER actually seen the show.  To say she was excited is like saying people think Michael Jackson is a little on the odd side.

The show itself was outstanding, I must admit.  It’s got an absolutely fantastic cast who are all consummate professionals to a man, woman and child.  The quality of the singing and dancing was fantastic.  Having read the notices when the show first opened, it appear to suggest that they had simply jazzed up the sets from the touring production, but this was like nothing I’ve seen on the tour – they’ve re-imagined it (to steal a pseudo intellectual arty-farty term from the movies) and come up with something very similar in concept by with many more modern flourishes.

I’m told that the whole production is based on the 90s Palladium version, starring first Jason Donovan and then the slightly left-field but equally acclaimed Philip Schofield. It certainly has a much bigger feel to it than the touring version and is a lot busier with set moves and scene changes.

The whole thing is technically remarkable, very much akin to the proverbial duck on the water – the staging is incredibly simplistic and the technical side appears incredibly simple.  But sitting and watching the vast variety of pieces coming to and fro around the two revolves centre-stage, it is easy to imagine the manically-paddling feet of the technicians backstage.

Talking to one of the cast after the show (which I’ll come to later), he was explaining how the technicians are almost as precisely choreographed as the performers on stage, such are the quick-change demands of the props and set dressings that are almost constantly on the move.

As is my wont at most theatre I go to now, with several friends working in the theatre and knowing some of their friends, I tend to scan the programme for names I may recognise in passing.  Imagine my surprise when, glancing down the cast list, I came across the name of a good friend of mine from my early days working the bars at MKT.  A friend who ran away from MK and his “cosy” box office job to enroll and subsequently take by storm the Guildford School of Acting.

Not having had his number for some years, I legged it around to stage door during the interval (not as simple in Town as it is in MK or Northampton, it must be said) and dropped him a note with my number on it to see if he wanted to catch up.  I was a mite nervous of meeting him as I was informed by K that she had been horrible to him when she knew him before.  That was before I realised she had meant when they were 8.  I figured he’d probably got over it by now.

So after the show we ambled round to stage door, dodging the throngs at the front of the theatre waiting for Mr Mead, and met up with JS and headed to a quiet little bar just around the corner for a drink and a catch up.

JS is one of my friends I’m most proud of – he’s gone out and done what he’s always wanted to do.  So many people who work front of house in theatres spend a lot of time talking about how they want to be on the stage singing, dancing, acting and everything else.  JS actually got off his arse and went and did it.

He auditioned like mad, got into a great drama school, did three years of hard graft and came out at the top of his class.  After jobbing for a year or so post-graduation, he joined the original cast of the new Joseph from the start and opened the show in the West End, where he’s now done a full 18 months and still has 6 months on his contract.  Not only that but, as a Swing, he has the hardest performing job in the West End.

Not many people know what a Swing is, other than it being a name at the end of the list of characters in most musical programmes.  A Swing is, in essence, a cover-player.  They are there to fill in the gaps when anyone is off sick or injured.  There are two types of swing – an on-stage swing or an off-stage swing.  An off-stage swing is essentially an understudy for a lot of roles, an on-stage swing is basically a performer in the show who plays whoever he’s needed to play.

In Joseph, for example, that means that JS has to know the part of every male character in the show, bar Joseph, Jacob and the Pharaoh – all three of which have their own understudies. That equates to 11 different roles that he has to know inside-out and be able to play at the drop of a hat.  And he rarely plays the same role more than a week at a time and often changes role every night.

Next time you’re in the Theatre and glancing down the first few names on the cast list, take a look down the bottom and spare a thought for the hardest working performers in the Theatre – eight shows a week of they-know-not-what, but rarely put a foot wrong.

All in all, it was an awesome night – a great show (albeit with a few slightly odd stylistic decisions – the less said about the random psychedelic 60s sequence the better) and a great time catching up with an old friend.  Who could ask for more.  I want to say a big thanks to my Ma and Pa for getting the tickets for us as a first 2nd birthday present – it couldn’t have been better.

So I’ve managed to get myself into trouble with… well… everyone this week, although I personally blame K for it, since it was her status update on Facebook which drove the minor frenzy on Wednesday.

Following my extremely positive annual review at Harefield a couple of weeks ago, Doc C lined me up to have my port-a-cath removed – that’s the small venous access device that sat under the skin on my shoulder and was used to pump my regular IVs into me when I was on them every few weeks, less painful and much less hassle than having longlines and cannulae.

Anyway, Doc C is really happy that I’ve progressed enough now that it can come out, basically saying that I’m not going to need IVs again, that to all intents and purposes, I’m “better”.

To my surprise, having thought it would take at least a month or two to sort out a port date, they phoned me last Thursday and arranged for me to come in on Wednesday and have it taken out by one of their surgeons – and who says the NHS isn’t fast?

So off I toddled, with Dad driving as I wasn’t too keen on ferrying myself back home after having my shoulder sliced open, own to Harefield on Wednesday morning, fully expecting a quick and painless procedure under a local anaethetic and then to be shipped off home.

Upon arrival and talking to the surgeon, however, i became clear that there was a large possibilty of the line causing problems with bleeding etc during the op, so he wanted to knock me out under general anaesthetic so I wouldn’t have to put up with the rather over-dramatic process of fixing things up once he’d cut me open.

Of course, the time before last that I ad a general, I ended up on intensive care – nothing to do with the anaesthetic, mind you – but this set alarm bells ringing for K, who posted an update on Facebook saying she was worried about me and my op.

Having thought it was only a minor, local thing, I hadn’t actually told anyone about going in to have it done, other than my ‘rents and K’s and the people I was supposed to be meeting with that lunchtime.  So, naturally, everyone who read the update panicked and starting sending all sorts of (lovely) concerned messages to K to find out what was going on.

I thought I’d help matters once I was straight-headed again yesterday by posting my own update apologising for not telling people.  Only then it got read by all the people who’d missed K’s status update and so still didn’t know, who then got the same level of worriedness about something that had been and gone and I got plied with even more (lovely) concerned emails and was once again berated for keeping it to myself.

So, for the record – apologies to everyone that I didn’t tell you it was going to happen and apologies to those people who we worried by not explaining ourselves properly.

Also for the record, everything went fine, there was no extra bleeding and my mini-lifeline that’s been in situ for over 13 years slid out nicely under the surgeon’s deft hands and now, presumably, lies in a pile of ash at the bottom of an incinerator.  Weird thought.

My shoulder is still pretty sore – hadn’t really thought that one through ahead of time, but it’s a bit obvious really – but I’ve got good painkillers to deal with it and I’m now able to walk about and generally use the arm, which is a good deal better than yesterday.

I solemnly swear from now on that any and all procedures that I know about in advance will be adequately diarised on here BEFORE they happen so that we don’t freak anyone else out.

Sorry.

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”.

Up at 6am this morning to get K to her Uni train for her long day – 9am lecture start and solid work through until 4 – pretty epic, really.  Still, if one will choose the hardest working course outside of Law and Medicine, what do you expect?  What I expect is, of course, huge backlash from every single student who reads this blog telling me that they’re course is just as hard-working as any other.  I won’t believe them, though.  Especially the Media students…

Back home I managed to get through quite a bit of stuff, looking into a couple of new business opportunities which may help me in setting up the company I most want to run as well as getting through some Live Life stuff which has been sitting on my desk for a while.

Around 10ish I gave in and took myself off to bed for an hour as I couldn’t keep my eyes open, then got myself up to head in to the flicks to catch Burn After Reading, the new Cohen brothers film.

I must confess I’m not exactly a Cohen brothers fan.  Blood Simple and Miller’s Crossing apart, I tend to find their films a little too quirky and impenetrable for my tastes, however much I want to like them desperately.  No Country For Old Men is a case in point, where the majority of the movie had me gripped and was really well put together, but the last act just left me cold.  It wasn’t even as if I could pinpoint what they were trying to do and addmire it, as I frequently can and do with films I don’t like but see the merit in.  I was just baffled.

Burn After Reading is more my kind of thing.  It’s got the Cohen quirks, but at a much more restrained level and features a fantastic cast doing some of their best work in a long time.  Not just George Clooney, Brad Pitt and Frances McDormand, either – J K Simmons knocks his ever-so-brief role out of the park and hits all the right comic notes and the rest of the cast are equally impeccable.

The plot is cleverly convoluted without getting beyond the audience.  The confusions and mix-ups that make a good thriller are in place, as is the almost trademark high-violence of the Cohens, albeit somewhat restrained from some of the rest of their pieces.  Pitt really lets himself go and looks like he’s having a wail of a time, but then I’ve been a fan of his for years, since the days before he was BRAD PITT or Mr. Jolie.

With the up-coming Changling, I think both Mr and Mrs Pitt are coming back to show that they have the talent to raise themselves above the kind of tabloid-fodder which has caused or reflected many a career misstep.  I’m always excited to see either of them work and when they come up with a cracker – as in the case of Fight Club, Se7en or Legends of the Fall for Pitt, Gia or Girl, Interrupted for Jolie – it always really pleases me.

If you’re a Cohen fan, there’s much to admire and it’s definitely a “Cohen” film, but if they’re not your cup of tea, don’t necessarily let that put you off – this is a far more “mainstream”-feeling movie with a more accessible structure, plot and storyline than much of what has come before.

Back home after the flick I caught up with a friend who I’ve not seen properly for far too long, which is always nice, although we could only squeeze in a quick hour before I had to grab K from the train, change hurriedly and pick Dad up for a trip to see MK Dons courtesy of Clydesdale Bank.

It was the first time I’d been to Stadium:MK and I have to say I was mightily impressed.  It’s a lovely stadium and the pitch was immaculate.  The game was pretty good, too – entertaining and interesting to watch the way the Dons play under Di Matteo, although with the final score resting at 2-1 to Stockport after an own goal in the last minute, it could have been a better result.

It was interesting to reflect on the power of team support, though.  As a Saints (Southampton) fan, whenever I go to a game, I get incredibly involved and tend to scream and shout with the rest of them.  If we lose, I’m always in a bad mood for most of the rest of the day.  On the other hand, watching the Dons, who I follow and support as a local team, I wasn’t overly bothered by the result.  It was a strrange feeling of under-whelmedness, I guess, which I found intriguing.  Maybe if I watch more games (which, incidentally, I’d love to do) I would have more of an investment in the club and their results, but as it was last night was just a really fun, if slightly chilly, night out.

I can’t believe my body sometimes.  Or maybe my brain.  One or the other, it doesn’t really matter because I’m just as cross with both of them for waking me up at 5am this morning.

Mondays are supposed to be my “lie ins”, with K not starting Uni ’til 11am meaning we don’t have to be up until 8.30am, as opposed to the usual 6am.  But this morning something inside me decided it wanted to be up and about at 5.  Five o’clock in the bloody morning!

Still, it meant I managed to be at least a little productive today, although I’ve managed to have one of those days where I look back over what I’ve done and realised all the things I wanted to get done and haven’t, which is mildly frustrating.

Still, I managed to fit in all of my necessary admin stuff and bill payments (although I’ve still got a mini-pile of post to go through) and get through a veritable mountain of ironing.  I can’t stand ironing, it’s the worst chore in the world, by far, and I’m also absolutely rubbish at it.  Actually, it might be the fact that I’m rubbish at it that makes me dislike it so much because it seems like so much work for so little effect.

Once I’d got all my housey bits done, I took myself off to the flicks to catch City of Ember which is not as bad a film as I thought it was going to be, although it’s a bit slow in the build-up and with a few bizarre plot strands which don’t entirely make sense.

Then it was off to Costco for our monthly stock-up on essentials and bits and pieces which we go through at such a rate as to make it cheaper to buy in bulk.  That said, I think we’d buy a lot more from there if we had more space for storage.  It’s a weird dilemma walking around the warehouse working out whether a) it’s cheaper to get it in bulk, b) you’ve got enough cash-flow to cover the up-front costs of something you might not buy for another 2 weeks and c) you’ve got enough space at home in the kitchen/in the cupboard/under the bed to find a home for it all once you get back.

Of course my days never run completely smoothly and I did have to make a minor detour back home to collect my Costco card which I’d handily filtered out of my wallet at some clever clean-up stage a couple of months ago.

From there it was to the Supermarket to get the more regular weekly groceries that are either uneconomical or too perishable to buy monthly in bulk, then round to the station to collect K and back home to start the somewhat lengthy process of packing up all the meat into dinner-size portions to chuck in the freezer until further notice.

After quickly checking emails and sorting out my plans for the week, it’s time to cook and get dinner ready, then to wash up and finally some time to hit the sofa and chill.

The best news of the day came in an email this morning, though, to let me know that I’ve won a place at a prestigious documentary pitching day at Channel 4 next Monday.  20 of us have been selected to appear in front of a panel of industry professionals and pitch our ideas to them for feedback and possible further work.  It’s really, really exciting and could potentially open a lot of doors for me at this stage in my break-out.

More of that and other new projects coming soon, so stay tuned.

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…

I was planning on going back over the last two weeks and updating the day-to-day entries of the blog to reflect all that I’ve been up to, but I soon realised that a) I’d be here all day and b) I’m not even sure I can remember exactly when whatever happened to me in the last fortnight happened.

To sum up, if you can’t be bothered to read this entire post, I have started two jobs, started a new screenplay project with a friend, pushed a short film project towards production, acquired another short film script, begun developing a slate of documentaries, watched my brother leave for a tour of duty overseas and won a Charity Times Award with the Life Life Then Give Life team for Campaigning Team of the Year.

So, biggest news first, I guess (apart from the Award, which I’ve obviously already covered), I’ve got a job.  Two, to be precise.

A couple of weeks ago, I was looking for some part time work up to my sixteen-hour-per-week limit to retain my benefits (and beyond which I’d need to work a considerable amount more hours) and noticed an ad in the local paper for a hotel looking for part-time bar staff for lunchtime shifts.  After going over to introduce myself and fill in an application form, I text my old boss at the Theatre in MK to ask for a reference for the bar work, since she was the last person who employed me as bar staff (albeit five years ago).

She replied positively, but then said that if I wanted bar work then they could offer me a job.  Without much fanfare, I went back for a training day a week last Monday and started my first shift of paid work for two-and-a-half years on the next night.

It’s a very bizarre mixture of feelings being back at the Theatre.  On the one hand, it’s pleasantly familiar – I know most of the managerial staff (even if high turnover means the bar staff are all new to me) and also where to find most of the things I need during a shift.  The bars haven’t changed much, apart from some of the stock having changed – Becks to Tuborg, for instance, and the appearance of Magners in the fridges.

At the same time, while it’s a safe and comfortable environment to start back into a working life, it also feels a little like a step backwards.  I’m now back doing what I was doing in 2003, before my work with the Education Department and the Youth Theatres in MK and Northampton and before the experience I gained as a Production Assistant/Youth Theatre Production Manager at the Royal.

I guess the way to look at it is that as long as I have the income I need to pay all of the bills, the Theatre work is only three or four evenings a week, which frees me up to work on my own projects during the day time, for which I have a lot more time free now that K has started at Uni.

Thursday was her official first day and it was a bit of an epic one.  The commute means that we have to be up at 6am to get to the station for 6.45/7ish for the 7.11am train to Euston.  Luckily, looking at her timetable for the term, it seems that she only needs a 6am start two days a week, getting a lie-in on Mondays and Thursdays and having Fridays off.  It is very much an atypical Uni course however, having as it does, a full timetable of lectures and lab time.  Monday mornings and Fridays are all the time she has off, Tuesdays, Wednesdays and Thursdays are all 6-8 hour days.  It’s intimidating for her and it’s going to be tough, but I know she can do it and I’m sure she’ll be fantastic as a Speech Therapist – even if that is four years away right now.

As well as starting at MK Theatre, I also went to catch up with my old Education boss at MK, who has now moved to the Grove Theatre in Dunstable, about 20 minutes down the road from me.  Whilst catching up with her, it emerged that she had another Youth Theatre Assistant position opening up to help out with running the Sunday afternoon YT sessions for the eldest two groups of the Grove YT.

Naturally, I jumped at the chance to leap back into the deep end and get my hand in again.  Last Sunday, I enjoyed my first day working with the YT in the first session of term and enjoyed it immensely.  It’s hard work – much harder than the MKYT, actually – but the young people who attend the sessions offer much greater opportunities for rewarding work.

As well as the Grove’s YT, I have also just started work on the school’s project I’m doing with Suze and her newly minted Catalyst Theatre Arts Ltd company.  At the moment, it’s not 100% clear what my role will consist of, as I’m largely there to support the school and do what they need me to do to ensure they make the most of the project.  It’s exciting for me as it’s the first time I’ve worked and been engaged as a “proper” artist, being seen as a practitioner in my own right and not as an assistant or general helper.

Personal project-wise, I’ve now got a producer on board my short film, which will be going into production over a weekend in early November.  We have offers out to cast at the moment and are hopefully of getting a couple of recognisable names, although it largely depends on their schedules, as I’m keen not to push our shoot dates back.

I went to a Screen South roadshow this week, which highlighted the pots of money on offer for short films in the South East of England, but all of them require the director (that’s me) to have a show-reel of stuff they’ve shot before.  This is a bit of a classic Catch-22, but since this film can be shot for next to nothing, I’m hopeful that even though I’ll miss this funding round, the script I’m developing at the moment will be a possibility for the next round.

I’ve also just started writing a feature project along with a friend of mine who’s as keen as me to get writing again.  It’s a low-budget British horror-comedy which we’re hoping will be quite saleable, or at leat easy and cheap for us to make ourselves if that turns out to be the more likely option.

Beyond the fiction stuff I’m working on at the moment, I’m also developing a trio of documentaries.  Two of them are quite immediate and one is longer-term planning.  One, in fact, I’ve already started shooting a video diary for and am currently working on establishing links with the Armed Forces to see if I can take it further.

It’s been a manic two weeks and blogging really took a back-seat to all the other things I was running around doing, but I’m sincerely hoping that having more time in the day to achieve the things I need to will enable me to keep a more day-to-day blog of the things I’m up to.  I’m aware of how great a resource blogs can be to keep tabs on people and gain encouragement for the kind of life it’s possible to lead post-transplant, so I really do hope I can keep it up.  Please keep checking back and feel free to berate me if I’m lax again.

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

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!