Yearly Archives: 2008

I figured I’ve taken enough time off fitness and exercise since my admission with CMV, so I’m back on the treadmill and all the other torture devices at the gym in a bid to make sure that all the weight I’m currently putting on goes on in the right ways, not just around my stomach and face as seems to be the case at the moment.

I surprised myself at how little of my aerobic capacity I had actually lost, I did a lot better on the bike and rower than I thought I was going to and then fitted in a really good upper-body resistance workout, which I’ll be aiming to do twice a week and also a twice-weekly lower-body work out on the day after the uppers. That’ll be Monday, Tuesday, Thursday and Friday so I have 2 days rest between weights sessions for specific areas and then the weekend off.

I actually really enjoyed the session today and I hope that I’ll quickly pick up the gym-addiction that I had started to develop before my incarceration.

I also did a second Untouched photo-shoot with a friend from the Theatre today, which went really well – he’s very photogenic and we came away with some good shots and some fun ones, too. I’m really liking the look of the natural light and the challenge of getting the shot I need right there and then. I’m also getting more and more used to the intricate settings of my camera – learning how to use things I’ve always had on automatic before, but which now enable me to better control the image, which is vital when I can’t play with it after the fact.

Also chatted to J, the model, about setting up some Theatre/Film projects in the not-too-distant future: he’s like me, looking to occupy himself and to experiment with things in a small environment, but he’s on the acting side and I’m on the behind-the-camera side, which is quite a useful combination. I also think he may be as driven as I am, which will definitely help us spur ourselves along.

This afternoon I met with two of the old MK Youth Theatre who have set up their own project called In Vitro for their own production company, Thrust Theatre Company, which I’m incredibly impressed with. They’re very on-the-ball when it comes to the money side of things, having worked out a completely balanced budget and ways to raise the money quickly and easily. Budgeting is one of the hardest things to learn and get right when you don’t know a lot about production in theatre, so I’m really pleased that they’ve paid it so much attention and not just gone in blind with the hope they can put on a play somewhere.

The play itself, written by one of them and to be directed by the other, is also very good. It’s very “issue based”, but that’s no bad thing for a young people’s theatre group aiming at a certain market, and they have things to say on the issues which need to be listened to by some of the adult population in this country.

They’ve asked me to be involved, which I’d very much like to be – I’ll be going along to most of the rehearsals and being a sounding-board for their ideas and helping them through the process in any way they need, sort of like a mentor, I guess, which is a little scary as I’m sure I’m not old enough to be a mentor to anyone.

Still, it’s another project, another little bit of variety in my life and it’s something else to be interested in and excited about. Can’t wait.

Mini-landmark day today, as I signed on to produce a short film for a director names Kieron Clark.

I subscribe to a filmmakers’ daily newsletter called Shooting People that contains all sorts of information and advice, as well as carrying job adverts.  Yesterday I saw an ad from Kieron looking for someone to come on board his short film, Polar Bear, to oversee the post-production process following next weekend’s shoot.

Although in the long term I see myself much more following the route of writing and directing, taking an opportunity to be part of a short film in any capacity is worth doing.  As a producer, I’m confident in my abilities with all the knowledge that I have of the role, plus all the experience I have organisationally through my work in the Theatre, which I think sets me up quite nicely for the producer’s role within the film industry.

It’s only a two-day shoot, which will happen next Saturday and Sunday evenings, then during post-production I’ll be liaising and organising the various elements and then once it’s complete, I’ll be responsible for gathering interest and submitting it to film festivals, which will hopefully garner us some awards or at the very least a little appreciation.

I’m excited about getting involved in a film project after trying to set up a few of my own, which are progressing but moving very slowly.  Hopefully with Polar Bear in the can I’ll be able to kick-start a short for me to direct and then move on to bigger and better things as the year flicks past at a tremendous rate of knots, such as it is.

Today saw the first photo shoot of the Untouched Photography project, using former Youth Theatre veterans Elaine, Bruce and Katie as my first experimental models.

I’m actually really pleased with the way things turned out. It was a lot harder than I’d first thought, as leaving the images free of manipulation means you have no kind of post-shoot fall-back if you didn’t get the shot quite right. There’s no adjustment of lighting, no option to lighten a slightly dark image up a little, and no chance to crop the image, even slightly, to take out something which may have crept into the edge of the frame.

What all of that means is that it’s really important to make sure that you’ve got the shot you want before you move on, to check the images you’ve taken. I nearly scuppered myself a couple of times with slightly off-kilter images, but caught them in time to shoot an extra couple of more precise frames.

It’s a great creative exercise, though, knowing that you have to get what you need there and then and have no safety net for the picture afterwards. And today was the first time I’ve worked in this kind of way – an organised shoot with models – as opposed to just happy-snapping family and friends on days out.

What pleased me most about it, though, was how much I enjoyed it. This is clearly going to be a lot of fun, so I’m looking forward to the rest of the process now and seeing what I can get from people. Anyone interested in modeling who hasn’t contacted me, feel free to drop me a line.

On a more every-day note, it was great to see the YT guys again, as it’s been over a year since I last saw them and I was looking considerably worse then than I am now.  It’s always great to see people’s reactions when they see me for the first time since the op.

When I was ill I got used to the frustration of people telling you that you look really well when you’re feeling like rubbish.  I never quite knew whether they really meant it (albeit in a relative sense) or if they were just being nice about seeing my huffing and puffing with oxygen specs up my nose, but either way it always bothered me.  Now when people tell me I look great, I get to tell them I feel great too – it’s a whole new world  that I’m still not getting tired of.

Let’s have more of it.

Because I can’t resist a decent plug for a friend:

“Are you a bit of a Musicals fan?

Want to help raise money for Charity simply by being entertained?

On Wednesday 23rd July 2008 a group of talented young performers will be bringing you an all-singing evening of Cabaret Favourites, featuring your favourites from the West End, Broadway, and Beyond! The performance is at Bourne Hall, Ewell (3 minute walk from Ewell West station) and starts at 7.30 pm. Tickets are £8 for adults, £6 concessions.

Tickets are already on sale so to get yours please contact Emily at emily@livelifethengivelife.co.uk asap. Please also get in touch if you or your company may be able to sponsor, advertise or support this event in any way.

All proceeds from the event will go to Live Life Then Give Life <http://www.livelifethengivelife.co.uk> – a charity which raises awareness about organ donation and transplantation and supports those awaiting transplant.

Many thanks in advance for your support.

Emily and the Cabaret Favourites Team.”

The last one was a knock-out, by all accounts, so if you’re near by or can make the trip, get some tickets and check it out.

Check this out.

Just 12 months ago the situation was looking pretty grim. Today, skipping off to Oxford for my annual review (the yearly MOT that all CF centres perform on their charges) had a whole lot less of a downer on it.

Last year, they didn’t even make me do the exercise tolerance test, which is a kind of modified bleep test involving shuttle walks of 10m at ever-increasing speeds to see how far you can get until either your lungs or your legs give up.

This year, I practically flew up and down the corridor, or so it felt. In the end, it was the tightness in my calves which really did for me, my lungs seemed happy enough at the exertion. Talk to my old physio (never to treat me again!) yesterday, when I caught up with her over a cuppa, she pointed out that my muscles are still very short of protein and so struggling to get back up to the speed I have managed previously, which is why my performance may still not quite have been as good as I was expecting.

It’s so unbelievably cool to see the team at the hospital when I’m not gasping for breath and feeling so crappy the last thing I want to do is hear the gossip. Now pretty much all I do with them is gossip, it’s great. I’ve developed such a friendship with everyone there over the years we’ve been together and I really do miss them all.

I know it sounds a bit odd – and I certainly don’t miss how ill I was, or how bad I felt – but over the years you develop a very close relationship with your care team; they understand you, they know you almost better than you know yourself and they very often know exactly what you’re thinking. For the last year of my care more than before, I was heading to the hospital often as much as twice or three times a week, so the bond with the team only got stronger as they worked their magic to keep me alive long enough to get my life-saving transplant.

I can never fully express the gratitude I have for everyone at the Churchill in Oxford. My life in the past has at times resembled a living hell, however much of a brave face I tried to put on it, but they have always been there for me. I’ve been able to talk to them when I’ve been too scared to raise things with anyone else, I’ve been able to laugh and joke and try to keep my spirits up. But more than anything, I’ve been safe in the knowledge that they were there – always ready and waiting with whatever I needed, whenever I needed them.

I don’t for one second miss my old CF lungs, but I do miss the interaction with the friends I made there. I just have to make more effort to stay in touch now I don’t need them every day of the week.

Last night I headed down to London to meet up with an old, old schoolmate who’s now working as Press Officer for a small record label and shop called Pure Groove. They were having a film night of music videos in their Smithfield shop to which Ben had invited me to scope out what’s going on in the music video scene at the mo. The intention is that between the two of us we’re going to start producing some vids of our own, which is something I’ve wanted to do for a while, but it’s taken the kick up the rear from Ben to get me really going.

There was some really interesting work on show last night, from some well-known bands and artists and some from bands I’ve not heard of. That’s not saying much, mind, since my musical knowledge is pretty much up there with my knowledge of particle physics, although I do know what I like (which is most things, really).

I’m hoping that I’m going to be able to get myself together to start pushing myself creatively again now I’m back on my feet and full of energy. I’ve just instigated another new project, which I’m also really excited about.

It’s called Untouched and it’s a photography project created as a reaction to all the heavily-airbrushed “perfect” pictures we see of celebs in magazines these days. My aim is to create images of people using only natural light and with no digital manipulation at all.

Hopefully, if the shots turn out well enough, I’ll be able to set up an exhibition at some point and maybe even sell them, but for now it’s more of a hobby-project to get me back into a fully creative mindset. The great thing about it as a project is that I have all that I need to get it underway right now. I’ve got a good-quality camera and a good bunch of friends willing to model for me, which is all I need. Incidentally, if you’re interested in modeling, drop me a line here and we’ll get together.

Two years ago today, my best friend turned into something more.  Since the summer of 2006 we have been even more inseparable than we had been before (if that’s possible) and I’ve found a new meaning to life and love.

I have no doubt that I would not have lasted as long as I did without Kati by my side – her relentless enthusiasm, her childlike playfulness and her positive spin on the most difficult things carried me forward in a way I wouldn’t have managed alone.

People say that love is the most important thing in life and that finding someone to love is the best.  Personally, I believe that friendship is more important – finding someone you trust completely and want to share experiences with, someone you can talk to, laugh with and be yourself all the time with.  I’m just lucky to have found all of that in one person.

To all those still looking, never give up hope and to all those who’ve found their “one” – don’t ever forget how lucky you are and don’t ever take them for granted.

I love you Kati, thank you.

What a night that was.

The great and the good of Ipswich gathered in force to raise money for the CF Trust and for a local children’s charity and altogether they raised well over £25,000.

It was an amazing experience to be in a room with a crowd of such wealthy and generous people.  The main bulk of the night’s money was made in the auction and silent auction, with people bidding against each other for things they didn’t even necessarily want in order to push the price up and raise more money for the cause.

I have to say, modest as I am, I was really happy with my speech.  It didn’t come out exactly as I’d written it, but I hit most of the beats I wanted to hit and I made the points I wanted to make without rambling or stuttering when I got a bit lost.  In fact I’m told that no one noticed that I got lost anyway, so that’s pretty good.

It was a long, long night, though – the first time I’ve been out “on the town” till the early hours since my op, and for quite  a while before then, too.

I was bowled over by people’s reactions to the speech and their wonderful giving spirit throughout the evening and was even more delighted to hear from the Editor of the newspaper that runs the event that next year the CF Trust will be the sole beneficiary.  And I get to go back again!

I’d like to extend a huge and grateful thanks to everyone who went along for their generosity of spirit and kind words they offered me on the night.  Thanks to people like these, the CF Trust can continue it’s work to try to ensure that we stop losing young lives to this terrible disease.

Here is a copy of the speech I gave this evening at the Evening Star Ipswich and Suffolk Press Ball, “The Champagne Ball, sponsored by Call Connection to raise money for the Disability Care Enterprise and the Cystic Fibrosis Trust.

“It occurred to me when I set about preparing this speech that I would actually have to do more work tonight than I’m used to, which I’m frankly quite miffed about.  Six months ago, I had a life-saving double-lung transplant that has completely transformed my life.  From staring into the abyss I’m now scaling mountains – almost – and my life as it was is nothing but a memory.

While all this is brilliant for me, it makes public speaking a whole lot harder.  I may have the breath to describe things to you much more easily now, but before my op I hardly had to say anything beyond standing up and introducing myself.  I’d walk into a room huffing and puffing, trailing my portable oxygen cylinders behind me and coughing my lungs out – there wasn’t a whole lot of need to describe how bad life with CF could be, I was living proof.

I’m now living proof of something else entirely – the miracle of organ donation –  but as much as I like to harp on about the desperate need for organ donors in this country and urge people to sign the organ donor register on the UK Transplant website,  it is still equally if not more important to me to continue to let people know just how horrific life with CF can be.

If you’re lucky these days, with an early diagnosis and a good medical team at a top hospital behind you, it’s possible for people with CF to reach their late teens and early twenties without a huge amount of trouble.  But for every person who skips the harsh childhood years, there’s at least one more who doesn’t make it into adulthood.

Having your lungs slowly fill up with thick, sticky mucus to the point at which you have less that 20% of the lung function of a normal person isn’t any fun at all.  Going through it as an adult was extremely hard and reaching the point at which my doctors considered me for transplant, giving me only two years to live, was impossibly hard to get my head around.  Going through that as a child – as far too many CF sufferers do – is beyond my comprehension.

Before my transplant, when I was on 24-hour oxygen, a good friend of mine who’d had a transplant passed on to me a portable concentrator – a machine that supplies a limitless quantity of oxygen by generating its own from the air, rather than having to rely on bottled supplies which lasted a few hours at best.  This was something of a lucky concentrator – a bit of a talisman – as it’s previous 2 owners had received their life-saving transplants.  It proved to be so for me, too, when I received mine when I can’t have had more than weeks left to live.

After I’d recovered, I continued the chain and passed Claire (as the concentrator was Christened before it reached me) on to a good friend of mine called Sam.  Like most things , though, luck runs out and just over a month ago, Sam lost her fight.  Although a transplant would have given her – like me – perhaps a few more years, the medical advances that the CF Trust are working on constantly and some of which are being trialled as we speak would have prevented the need for that even to be considered and the effervescent, out-going, wonderful character that Sam was would still be with us.

The CF Trust needs 6 million pounds this year to keep its research moving forward and I’m here to ask you to help stop the loss of people like Sam and the 50 or so young people we lose to this malicious and destructive disease every year.

Thank you for coming and thank you for listening.”

If it wasn’t so completely awesome, I may well have become bored of my near-constant refrain now, “what a difference a year makes”.

Not much more than a year ago, we had an exciting helicopter trip to my Godfather’s house near Ipswich to spend the day with them and see their newly almost-finished renovations to their place.  The flight, while being an added bonus, was actually a necessity – there was no way I was going to be able to cope with travelling a 4-hour round trip by car in a single day.

We’re back here this week, ostensibly to give a speech at a CF Trust fundraiser, but also for K and I to have a bit of a get-away and take some time to do the chilling out we were supposed to do in the Lakes this time last month.

Last time we were here, my abiding memory is sitting on the side of their gorgeous outside pool, trailing my oxygen tubing back to the small portable cylinder behind me, dipping my feet in the water while I watched everyone else swimming, splashing and having fun.  This time round, I’m right in there with them, swimming, splashing and having fun.

It wasn’t until I was ducking and diving under the water, swimming lengths, seeing how far I could swim on one lung-full of air that I remembered how much of a water baby I used to be.  Back in the days when I was a littl’un and my chest wasn’t too bad, I used to spend any time I could immersed in water.  I had swimming lessons like a lot of kids, yes, but I also simply wallowed in water.  Anywhere we went that had a pool – hotel, friends’ house – I’d be in there almost from the moment we arrived until I was dragged out to dry off before we left.

Floating around the pool in the sunshine yesterday, I suddenly remembered all those years ago and the sheer enjoyment I got from being immersed in water.  It was heaven to be able to indulge myself again. 

I spend so much time these days thinking whether or not I’ve been happier than I am right this minute.  Every day seems to bring a flood of new experiences, old memories and to highlight just how much my life has changed in the last 7 months.  It truly is a miracle and I truly feel like I’m managing to make the most of it.