I often laugh at the BBC local news when they run Transplant-related stories – they’re so hackneyed and cliché now that you can pretty much use the same voice-over and just change the pictures.
But I had to eat my words this evening when I got this link through to my friend Sally’s report that went out this lunchtime. It’s hard to think that a little over a year ago I was in exactly the same position – here’s hoping that this time next year Sally’s in exactly my position.
Today’s been a productive day (alongside yesterday) in getting started on a new writing project whilst polishing an old one.
A previous screenplay of mine on which I’ve been sitting for a while has come back out of the draw for a once-over. I’m impressed actually with how good it is, but far too aware of it’s limitations. When K first read it, she gave me some great notes on it, which I’m now about to implement, along with a whole raft of changes I’ve identified for myself in my latest read through.
At the same time, I’ve been hit by one of those rare ideas that comes into your head almost fully-formed. It’s a complicated story (or rather group of stories) that will take some time to work into a coherent structure, but I’m really pleased with the concept, which I think could be really powerful. And, without being too pessimistic, cheap to shoot as well.
On top of those, I also wrote a short film script this morning as well, which has been floating around in my head for far too long and finally found itself a place on the hard-drive of my computer. It’s actually a really simple story and a really easy shoot, so I’m in the process of working out if there’s any way I can fit it in before Christmas. I guess as a little present to myself or something. It would be nice, but it does involve finding a cast of one guy and one girl who are free for a day to shoot in MK sometime next week (possibly Thursday 18th), so we’ll see what happens. I’m not getting over-excited about it yet, but it could be cool if it comes off.
Don’t worry – I’m not about to spend another 500 words harping on about how brilliant the world is and everything that’s in it and how great my life is and how I love everything I can do that I couldn’t do before (I’ll probably get back to that tomorrow…).
No, this post is about the movie of the same name, the 1947 Frank Capra classic with James Stewart and that lady that K tells me went on to be in Oklahoma!
Our local Cineworld, despite having been kitted out with state-of-the-art digital technology as part of a Government scheme which was supposed to see more and more independent films hit the high-street, has a pretty poor record on showing anything that’s not a blockbuster. So it was not only very refreshing, but also amazingly fulfilling to be able to go and see – for my first every viewing of the film – It’s A Wonderful Life on the big screen.
The flick is one that K likes to watch every Christmas without fail – it’s a perennial favourite of hers. Last year she introduced it to my family, but over-dosing on immuno-suppressants as I was this time last year, I was upstairs trying to sleep and not throw up at the time.
So when we both heard that Cineworld was screening it, we knew we had to go.
The delightful thing about old films is how they take their time in telling their story. They’re happy to wander and meander and see where they get to before the main bits kick in and they’re happy to settle for periods on minor details which nowadays would be incredibly plot-specific, but then were simply interesting things they wanted to show.
That’s also partially their downfall, though, too. For no matter how much I want to watch some classic movies, I still find myself getting fidgety if I’m in an environment with lots of other things going on. If I’m going to watch an old film, I need to be able to turn off my phone, close the curtains, turn the lights off and focus 100% on the screen and let myself get sucked right in. It’s increasingly hard to do so in the modern world, though, so I fear I’ve not seen as many classics as I should have for such a profound movie lover.
It’s A Wonderful Life had all the elements to be a really disappointing film. After all, how often have you heard someone rave about a movie for days on end and then when you see it there’s nothing there to back it up, or maybe it’s just been over-hyped in your mind. This, however, was everything K said it was and more. Clever, funny, emotional and kind-hearted, it’s the very definition of a feel-good Christmas movie, but not in the modern sense of garish colours and broad comedy – this is a movie to get swallowed up in and one which leaves you wishing you lived in the age when a man wouldn’t dream of leaving the house without a hat to tip to the ladies. When women wore nothing that wasn’t immaculate and beautiful and when Hollywood was unafraid of the soft-focus close-up.
If Cineworld don’t have it back again next year, I swear I’m going to launch a sit-down protest in their popcorn machine.
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.
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 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.
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”.
So obviously I’m hugely behind again, something I will try to rectify if I get half a chance at some point today – how likely that is I have no idea.
But I thought it important to jump on here to respond to the Organ Donor Task Force report on Presumed Consent (otherwise known as Opt-Out), which was published this morning and has concluded, after over 2 years of research, that it cannot reccommend Opt-Out at the current time.
There are all sorts of arguments for an against presumed consent and I don’t think it is possible to argue that it would undoubtedly increase the number of potential donors in this country were it introduced. The key part of that sentence, however, is “potential donors” – unfortunately at the current time, the NHS cannot cope with any increases in the donor population without serious investment. They are already running pretty close to capacity and without increased spending on intensive care beds, transplant coordinators, transplant surgery teams and all the other elements that need to be improved in the transplant network then it won’t actually see any rise in the number of transplants performed.
The good news is that as of last January, when the Organ Donor Task Force report into the transplant system as a whole was published, there is a nation-wide investment of £11million going into improve all of those things I’ve listed above, including a £4.5million public awareness campaign.
The key element of the presumed consent is that the family would have the right to over-ride the decisions made by the medical team if they believed that it was against the interest of their loved one, which could lead to donation being refused simply because the family did not know their loved ones wishes. Opting in to organ donation is not only seen as a vital part of the “gift” of life by many recipients, it’s also the only way you can know for certain that a person wishes to donate.
The current chasm between the number of people who say they would donate their organs (90% of the UK) and those signed up to the organ donor register (25%) indicates just how powerful apathy can be. If people prove equally apathetic about discussing and deciding their wishes under a system of presumed consent, it will lead to many more transplants being refused and more people dying on the waiting lists.
Yes, presumed consent can increase the pool of possible donors, but until we’ve sorted the infrastructure out first, there’s no point in causing the inevitable national outrage that would come with presumed consent. Remember it’s always those who are least happy who shout the loudest. Instead, let’s focus on getting as many people as we can signed up while the Government focuses on improving the service. After all, if we can get 70% of the population signed up to the register, there’d be no need for a presumed consent law any more.