Yearly Archives: 2008

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for all the good wishes for my session at Channel 4 this evening, it went really, really well.

The event itself is run annually by Stellar Network and is called Pitch Up (or Pitch Up 2008 as it was).  People essentially submit their pitches to Stellar then the top 20 are chosen to be pitched to industry execs who have experience in all the various fields, from drama to factual to entertainment and all the cross-breeds in between.  Usually you have to pay for your pitching space if you are selected, but I managed to win myself a spot in a mini-competition, which was pretty much the only way I was going to get there.  Being the kind of cash-strapped, early-career filmmaker that I am, the train fare to London was enough to dent my pockets, so paying for the priviledge of being there would have probably been beyond my means.

At the Channel 4 building on Horseferry Road we all arrived and mingled in their little sub-street amphitheatre space (very media-stylee), some people chatting others standing around feeling like a bit of a tit.  No prizes for guessing my catagory.

Then we were all ushered into a screening room at the back of the atrium-thing and sat down to begin the round of pitches.

It was really interested to sit through as so many people didn’t obey the rules of a 30-60 second pitch and still more seemed like they hadn’t really prepared anything or thought about what they were going to say.  We all know I’m not big on planning, but even I had worked out how much I could shoe-horn in to 30 seconds of pitch, which was essentially this:

“For 25 years I lived with a degenerative lung condition called Cystic Fibrosis, which meant I was never able to do all the things I wanted to do.  11 months after a double-lung transplant, I now want to see what I’ve been missing.  How Hard Can It Be? is a documentary following a 26-year-old transplant recipient trying to see how hard it is to play a variety of sports to a competetive or even professional level.”

The feedback I got was really positive.  One of the panel thought it was a great idea, but suggested I think about involving more stories from the transplant community, mentoring them through the transplant process and then accompanying them on their challenge of a lifetime.  I guess it makes it a little more Ben Fogel and less “all about me” – plus, the more transplant stories there are involved, the more emotive the show will be.

Eventually, when all 20 pitchers had done and got their feedback, we were sent out for a resess and informed that prizes would be given out to the best pitch and two runners up.

I counted at least three pitches that were better than mine and that got more positive feedback, but to my surprise when we went back in, I got one of the runner-up goodie bags.  Considering that one of the criteria for their judgement was whether or not they would feel confident taking the idea and pitching it to the network, I was quietly pretty impressed.

I took a moment after the session ended to talk to the member of the panel who gave me feedback.  It’s all very well being given a goodie bag and all, but I wanted to know if they thought it was genuinely a viable idea, or if they just had to pick a few “winners” to give out bags to.  I wanted to know if it’s worth me pursuing futher.

To my surprise (having prepared myself for a straight “No”), she told me that she thought it was worth sticking with – if I made the changes that she’d suggested and wrote up a six-episode outline, she thinks it’s worth going for.

Awesome.

As you’ll doubtless know from my blog earlier in the week, I’ve been struggling to come to terms with T’s death and my thoughts and attitudes rising from it.  It’s been hard and I’m really grateful to everyone who took the time to comment and leave me words of advice and wisdom and I completely respect those of you who were angered or upset by my post.

It’s funny how sometimes things come along at just the right time to set your mind straight.  On Saturday morning, as I was preparing myself for a first step towards following the path I’ve wanted to stroll down for years, I checked in on the blog of friend and fimmaker Chris Jones, director of the soon-to-be-Oscar nominated (if his campaign pulls it off) Gone Fishing, where I read this post.

I’ve always admired Bruce Lee, but strangely not really for his films.  I’ve never really been a huge fan of martial arts movies, although anyone can see the amazing talent that he had.  What’s always impressed me more is his philosophy on life.  The Tao of Jeet-Kune-Do is the book Lee wrote about his own form of martial art, his own Karate-style form of combat he developed over a number of years.  But more than that it’s a tome about life and how to approach it.

Reading about his words of wisdom to Marlyn really struck a chord with me.  “What is, is,” sums up the way I’ve generally always tried to look at life, but something which I had begun to lose sight of in the maelstrom of life that’s whipped up around me in the last week or so.

I realise now that a) T was a loving and caring person who would’t have held a grudge against me even if she’d known how I was feeling and b) there is little I can do to repair whatever damage I perceive to have been done, so there is little point in letting it get me down.  In fact, Marlyn has helped me even more in an email she sent me:

“When I was very young a woman told me that “one is dead when one is forgotten”.  To this day anyone I’ve known who has died is still very much alive in my mind.  The idea brings me peace and comfort because I can visit any one of them when ever I wish. And you can do the same with your friend.  Don’t beat yourself up for thoughts unspoken, grudges held.  It’s what IS.  Let them go.  You only stop yourself if you don’t.”

I don’t think I could have worded anything more succinctly and I sincerely hope that the renewe perspective I’ve been given can stay with me as I move, in Chris’ words, onwards an upwards.

Today marked the start of something more than exciting for me.  Last week, Live Life Then Give Life invested in a new media production package of professional equipment with which to document all the activities we’re involved in, as well a creating short films and videos to play at events and talks being given by any of the trustees or advocates.

Today one of our advocates, the irrepressable Nelly Shah, orgnised one of the 108 World’s Biggest Walks that took place at the same exact time (12noon GMT) in 18 countries over 5 continents.  Emily and I headed down (well, she came up) to Stanmore in Middlesex (just off J4 of the M1) to join her and her family on their 5km walk around Stanmore and Edgeware to raise awareness of organ donation and the chronic shortage of donors, particularly in the black and Asian communities.  Nelly, who’s originally from Kenya, has now been waiting for five-and-a-half years simply because of the dificulty of matching her tissue type with such a small pool of donors.

I took our equipment down and shot my first professional documentary pieces, as well as several interviews, which will go into an awareness-raising, high-impact video package for a talk Emily’s giving next weekend to an audience of over 2000 people from the Tamil community.

It was unbelievably exciting and I’m so amazingly pleased to have been given the opportunity to do this by the guys at Live Life Then Give Life who have placed an enormous amount of trust in me to deliver high-quality product to help the charity achieve its objects.

Of course, that’s only half the task, I now have to assemble the footage into usable pieces – one for the website to promote the walk and one, longer, piece for the talk DVD, which will also include an interview with two parents who have recently lost their 15-month-old son for want of a liver and small bowel.

It has to be said that I do feel a certain amount of pressure to deliver now, as it was me who spent a lot of time and energy researching the equipment and talking to the other trustees about the benefits and pluses of investing in the camera and sound package.  But, to be honest, I’m actually quite enjoying the pressure as it’s been a while since I actually had any pressure on me to achieve anything at all, so it’s nice to have a target.

Things are picking up pretty fast now, as I move further and further towards the world of work.  Today I went down to Bletchley train station to do a location scout for the short film I’m shooting in just 2 weeks’ time.  It’s unbelievably exciting to be actually preparing to do something for real that I’ve been imagining myself doing all through my time on the list and before, when I was too ill to consider actually getting on and doing it.

Now, more than ever, I’m aware that filmmaking is 100% what I want to do and to earn money doing it is my ultimate goal.  The next few weeks are going to be a kind of make-or-break time for me when I will discover whether I am actually capable enough to pull it off, or if I’m going to have to revue my plans and options and consider a change of direction.

The scout was really exciting as it really drove home the fact that is is definitely happening now.  It’ll be a real challenge and it’s already pushing me creatively more than I’ve been pushed before, but I’m absolutely loving it and thriving on the freedom to make decisions based on what I want to achieve, rather than aiming for the results someone else is going for.

I can’t wait to get shooting and turn out a really top-notch little film.  Here’s hoping it can meet my expectations and provide a launching pad into the career I’ve wanted to follow since I was in my teens.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Breath easy, angel, smile down on us all.