Archives: Day-to-day

The best and the worst

Since my transplant life has taken on a whole new slant. For the most part this is absolutely, 100% undeniably awesome – being able to do the things I want to do, not having to worry about all the rubbish that went with the battle against CF. But every now and again something hits you with a bump, or a thud, or a massive hammer-blow to the head.

I got a phone call from a friend’s husband this morning saying he’d just been off the phone with the mother of a friend of mine from years back. She had CF and we used to chat a lot about all sorts of things – frequently how rubbish CF was – and make each other laugh and work through things when we needed some support. Sadly, she passed away this morning.

There’s such a complex mix of emotions post-transplant. On the one hand, I’m so deeply saddened that another young life has been lost to a disease which needn’t take people away from us. On the other hand, I’m so deeply grateful to my donor and their family for giving me the chance to retake control of my life and battle on to achieve what I want to achieve. It’s both deeply upsetting and hugely motivating when you hear of someone losing their fight.

Just last week I was in Oxford for my annual review with the CF team. It’s really a bit of a formality, as the CF no longer affects my lungs, but it’s still important for them to keep an eye on the other parts of my body CF can affect. It was such a great day though, epitomised by one little moment.

As the physio was doing my general assessment, including posture and other things, she had to listen to my chest. I’ve known my physio for a long time – over 10 years I’ve been going to the same clinic with the same physio now – and as time passes and you go through phases of ill-health, better health, dreadful health and have the kind of scares I went through, physios are the people you naturally seem to turn to. Most PWCF will tell you that their physio is the person they confide in the most, more often than not because they are the member of your medical team you spend the most time with due to the frequent rounds of physiotherapy needed to keep the chest at some vague approximation of a functioning level.

So my physio is doing her assessment and I lift my shirt for her to listen to my chest. I used to know I was ill when the physio or doc would listen to my chest and pause the stethoscope in any one place for longer than a single breath. As she listened to my chest, she paused in one particular area and a dread went up me, until I glanced down and saw a smile creeping over her face as she listened to my now-soundless chest.

For years all anyone had been able to hear on my chest was the crackly static of blocked and infected lungs, now there’s nothing. And as she listened, my physio couldn’t hide her big, beaming smile at the fact that there’s nothing for her to do on my chest any more.

I’m enjoying a life I never thought I would or could, thanks to the generosity of one family, but the price I have to pay for the extension I’ve been given is seeing people who could so easily be like me losing their fight.

This is why I work with these guys and this is why I’m making Remembrance – if they’re not here to reach their dreams, I damn sure better make an effort to fulfill mine. If you want to buy in to my dream, go here to find out more.

Hibernation

I know you’re not supposed to hibernate in the summer, but my excuse is that it’s been rainy and horrible once we had a short spell of loveliness. Still, apologies for the silence last week – I had a few issues I needed to sort out before I could devote myself to getting on with Remembrance and pushing forward.

I’m going to be continuing the break-down of the screenplay and the budgeting this week, and will shortly be on the lookout for the initial members of my crew, more on which later in the week.

For now, I’ve just sent off a couple of proposals to people who may be interested in getting involved in one way or another, so we’ll wait to see what comes of those.

No more hibernation, I promise.

The Military’s on board, now we need you

As I said on Wednesday, we’re going to need your help to make this film and achieve what we want to achieve. That means cold, hard cash – £25,000 of it in fact.

It’s a huge amount, but it’s worth it. To be considered for Oscars and the like, shooting on film is really the best way to go – it’s not dead and it never will be. More than that, though, as a calling card movie for both myself and the people who end up coming on board to help, it’s important to show the world that we can handle the big boys’ toys.

More than money, as I said before, is support – and as I know now, support comes in many fashions. I will be asking everyone who works on this film to give their time for free. That includes the military adviser who helped me write the screenplay and their commitment to assisting us throughout production.

So far they have been absolutely brilliant. Not only were they instrumental in the creation of the script, but they have also offered us the use of a fantastic location to shoot the military battle scenes in as well as full technical support and advice throughout preproduction and production.

That should hopefully tell anyone umm-ing and ahh-ing over this project something significant – these guys like it. A lot.

With military backing and the financial support of not only you guys but also some bigger sponsors I’m hoping to pull in, we can truly make this a film to knock people’s socks off.

There’ll be more on how you can help in non-financial ways here next week, but until then have a root around the sofa and see what you come up with. You can find out all about your options and rewards for chipping in here.

Remembrance is here

After all the to-ing and fro-ing, the waiting, the build-up, the Big Secret Project is finally here.

Oscar

Oscar

The aim? To win an Oscar and/or a BAFTA for Best Short Film.
BAFTA

BAFTA

As many of you will know, a good friend of mine set out to make a short film when I was waiting for my transplant. Gone Fishing eventually reached the final 7 in the shortlist for the Oscars, some going for a little film made with the help of friends, colleagues and people he didn’t even know at the start of the project. Shot on 35mm film and finished to the highest of professional standards, Chris’ film has won far too many international festivals for me to count. If you visit his blog, you’ll be able to find out all about it and the festivals.

By far the biggest thing to come out of Gone Fishing for Chris, though, is the launch-pad it has given him into the film industry. From taking meetings in LA to signing with an agency and manager, Chris is living the life he (and I) has always dreamed of.

When I sat at home an mulled over my options for how to get where I want to go when I don’t know how long I have to achieve my goals, Gone Fishing and Chris’ experience thrust themselves into my consciousness. I’ve always wanted to be a filmmaker, I’ve always wanted to make films. It’s that simple. So why sit around thinking about it when you can actually go out and do it?

And given the blessing I’ve been given – the most wonderful gift any person or family can give to anyone else – it seems even more important to push myself to achieve the very best that I can. No middle ground, no soft-peddalling. If I’m going to do this, I’m reaching as high as I can. As a wise man once said, “Reach for the stars and you may just reach the ceiling, reach for the ceiling and you will barely get off the ground.”

Every journey, as they say, starts with a single step. And this is it, “Remembrance”.

Remembrance is a 15 minute short film about war, family and memory through the eyes of three generations of a single British family. It’s chock full of action, carefully-crafted dialogue and packs a real emotional punch. It’s designed to showcase all of the things I can do as a director and writer, working with big names (if things go to plan), working with children and young actors, directing action scenes and working with stuntmen and stunt arrangers as well as working on a smaller scale with intimate dialogue scenes.

As I said when I first sat down to write about it: this one’s good. It’s really good. And I believe it can go all the way. I intend to fully document the process on here for everyone to read and for filmmakers to learn from and I will shortly be enlisting you all for your help in creating this piece of historic cinema. It may not rock the entire world of film, but it will turn my world upside down and become a launching point not just for my career, but hopefully for everyone involved.

Keep checking back for progress reports and on Friday I’ll tell you all how you can help.

Turning 27

This is my second post-transplant birthday and I’m delighted to say that the novelty really hasn’t worn off. This time last year I was celebrating a birthday I never expected to see just weeks after mourning the loss of a friend whose transplant didn’t come in time.

This year is no less emotional, having been part of the Team Ethan fundraiser last weekend and remembering that I’m only here thanks to the generosity of my donor and their family. But it’s also been brilliant to be surrounded by my friends and family and really enjoy a day of doing nothing but what I wanted to.

I’ve been so overwhelmed by all the messages of support on Facebook and texts and phone calls from people. I really didn’t expect so many people to get in touch – it’s all a bit of a shock, if I’m honest, although K thinks I’m silly for being surprised. I suppose I simply had no idea that so many people were watching out for me and keeping tabs to make sure I’m doing OK.

It’s also really given me the kick up the proverbial to get myself into gear. Last week was a really hard week and I lost my focus a little, hence the delay in announcement of the Big Secret Project. But having had a weekend to look at the bigger picture, I’ve realised that this is 100% what I need to do with myself right now. And if I can’t do it with the MASSIVE team of supporters I’ve clearly got behind me right now then, quite frankly, I’m never going to be able to do it.

So from tomorrow it’s onwards and upwards – the project is a GO and will be announced right here and on the TinyButMighty website within the next 48 hours. So come back soon!

Minor delays

Apologies for the lack of formal announcement of the new project – this week has been a whirlwind of catching-up after getting put back and slowed down by the weekend in Manchester. I’m sure as I push forward with TinyButMighty I’ll get more used to fitting turn-around time into the schedule (and my diary), but as you can see from the completed Team Ethan doc below, I’m perfectly OK with being behind if it means I get to do something to honour this little fighter and his truly remarkable family.

[vimeo http://www.vimeo.com/4774355 w=500&h=375]

Busy weekend in Manchester

I spent the weekend with Live Life Then Give Life Advocate Holly Shaw (also star of Channel 4’s Battlefront programme
last Thursday) and Vice-Chair Emily Thackray in Warrington. We were there to shoot an interview with Holly and also to cover the Team Ethan participation in the BUPA Great Manchester 10k on Sunday morning.

The family of Baby Ethan, who sadly lost his fight just a few weeks post-transplant earlier this month, are truly amazing people. Despite burying his son just last week, dad Stu lead the team around the centre of Manchester, registering a time of 65 minutes for the 6-mile-plus run.

Even more inspirational was the enormous turn out of family and friends at their LLTGL fundraiser in the evening to bring the events of the day and the recent weeks to an emotional but uplifting close.

In the end they raised a phenomenal £5,900 for LLTGL between the online fundraising on their justgiving page and including over £3000 raised on the night in the room. We were all humbled and privileged to be there and experience such an amazing display of mutual support.

The video from the weekend will be up on the LLTGL website this week and if you want to donate to Team Ethan, you can do so here.

It starts…

So here we are – the brand new TinyButMighty blog. Don’t worry, all you SmileThroughIt acolytes, the whole of the old blog of my wait for transplant and beyond is still here, you just have to peel back through the pages and you’ll find it all saved for posterity.

But as I said in my previous post, things are changing around here.

The first thing, then, is TinyButMighty, my new production company that you can read all about here. Although it’s been set up to produce all of the work I do, the website and the changes to the blog and my Twitter account are all down to one singular project, currently dubbed The Big Secret Project. All will be revealed after the weekend when the final few shuffles have been put into place and I can finally announce the Grand Plan for the next few months and – possibly – years.

For now, I’ll leave you to explore the website and learn about TinyButMighty and what it can do for you and your companies before, during and after the Big Secret Project.

From here on out, dream realisation will be my goal and I intend to achieve it!

Change is coming…

As we move through our lives things naturally evolve. Whether it be learning how to walk, talk, communicate and mis-communicate or the effects the passage of time has on friendships, relationships and our outlook on life.

You will all know only too well how important my outlook on life has been to me, hence the naming of this blog originally as “Smile Through It” – a reminder to myself during my wait for a transplant that life had more to offer than the misery I was experiencing day-in, day-out back in the bad old days.

Today I’m no less in need of such a reminder as I was then, although my problems are less weighty than they once were.

However, the time has come when Smile Through It has served it’s purpose – chronicling my daily life in the build-up to and recovery from my transplant, letting people know how I was doing and feeling and along the way helping to inspire a few people to keep on pushing.

If you read this regularly – and let’s face it, you wouldn’t be here reading this now if you didn’t – then you’ll be only too aware of the recent lack of updates. More than anything, I just don’t feel that my life is that interesting to anyone any more. Don’t get me wrong, I love my life, but right now I have so little time to update and when I do it’s always with the kind of mundanity that I spend too much of my life berating other blogs and bloggers for. Actually, that’s a lie – I don’t even bother with many other people’s blogs any more as I don’t have time to wade through them all. I have my select band of people I follow, but I prefer my news in person.

So, the evolution of this blog commences. Over the next few days you will notice some changes on here as I adapt the site to fit with my current plans. This afternoon I have taken what will doubtless turn out to be a life-changing decision on a new project and I’m about to leap into it full-force. Part of this process will be to introduce new readers here, but that means things will change. The blog will be renamed, rebranded and re-engineered and you’ll arrive at this address a little confused the first couple of times I suspect.

Rest assured, however, that I’m going to need all you loyal readers more than ever in the coming weeks and months as this will be the biggest project I’ve ever undertaken. I remember how you all kept me going in the weeks after the op, so I’m hoping you’ve still got that motivational spirit within you to help push me forward when the going gets tough.

Smile Through It will be preserved, with all my previous entries staying up, but for now, in the words of a wise man and friend of mine, it’s “Onwards and Upwards!”

Returning heroes

So this week (well, since Wednesday) has been spent in Plymouth, home of 42 Commando Royal Marines, for their homecoming celebrations after their 7-month tour of Afghanistan.

Festivities started with a parade through the centre of Plymouth on Thursday morning. The Marines had hoped that the crowds would be big enough to ensure a solid single-file line of supporters along the route. They were wrong. Very, very wrong. There was a solid line of crowd around the whole route, but it was 3-4 people deep everywhere and at points that rose to 7 or 8 people deep. The reception was fantastic and the Marines were clearly all stuggling with a mixture of emotions ranging from proud to humbled, relieved to saddened.

Nothing like a parade of all the men in the Commando serves to highlight the loss of the 3 men who never returned. As the Commando filed passed the families of the fallen men – Marine Georgie Sparks, Marine Tony Evans and Lance Corporal Ben Whatley – on the dais, they saluted their memory. Everyone in the crowd, as jublilant as we all were, spared a though and shed a tear for the families who didn’t get to see their sons, brothers, husbands and fathers marching past with their mates.

After the parade the family all took a wander with Bro up on the Hoe, before grabbing a cracking lunch on Princess Street, after which he left us to return to Bickleigh for the tree planting ceremony for Georgie, Tony and Ben. Doubtless an emotional occasion, it does help to provide all sides with closure on the events of the last 7 months.

That evening we headed out to the Tanner Brother’s Barbican Kitchen for a meal which blew us all away. After dinner we headed out for a nightcap before calling it quits pathetically early for a party-week in Marine-ville.

Friday began with the worst hotel breakfast in the world – disappointing as the hotel at been pretty good up to that point – followed by a parade and medal ceremony back at the Bickleigh barracks, which we managed to see but sadly not hear since either the sound-system went wrong on our side of the field or else the wind simply carried the noise off.

Then we grabbed a couple of cheeky drinks before heading into the middle or Dartmoor to the Warren Pub/Inn/Freehouse where I had my first rabbit pie for absolutely ages. Apparently renowned for their pies I was soon jealously coveting Bro’s steak and ale pie after having a sneeky dunk of a chip in the gravy. Heaven. If you can find it out on the Moors – nestled at the side of the road just beyond Princetown – you’ll have a gem of an experience and a cracking meal.

After heading back to Bickers and then into the country for a bit of a walk – more sheltered than the Moors but with no less phenomenal a back-drop – we shot back to the hotel for a little R&R before another night out. This time starting at Artillery Tower restaurant, a quaint and friendly little eatery crammed full of character and quirks, we then headed back to meet Dazz at the hotel after his trek down from Leeds to spend some time with his cousin – also a 42 man – for a drink.

The hotel bar was populated by a number of…inebriated people who were all, let’s say, of a certain age. A large contingent of them were present to commemorate the HMS Gloucester’s – The Fighting “G” – stirling work during the German invasion of Crete before it’s eventual sinking in 1941. As soon as they realised/heard/overheard that Bro was a Marine, the place exploded into a riot of congratulations, handshakes, backslaps and war-stories. From a bunch of people who’d never actually been to war. Go figure.

Once we’d extracted ourselves from the bar, we headed into town and hit the nightlife hard. I eventually stopped drinking around midnight, knowing that making myself ill is a big no-no post-tx, but stayed out with Bro and Dazz watching the latter trying to keep pace with a man he should never be able to keep pace with. Ouch.

This morning, once we’d risen from our stupor, we headed out to the Dartmoor Diner outside Bickleigh for a bit of brekkie before hitting the shops on the Barbican from some bits and pieces, then heading off on a leisurely drive home.

It was a great “weekend”, spending time with my Bro and the family all together, eating and drinking far too much, but enjoying every minute of it. As you get older you realise how rare these occasions become when you can all spend time together without someone having to dash off somewhere and it was made all the more special by the true purpose of the occasion to congratulate 42 Commando Royal Marines on everything they’ve done for our country doing a sometimes thankless job. And, of course, paying our respects and tipping our hat to the three men for whose families there was no such celebration this weekend.

God bless you all, Georgie, Tony and Ben – let your deaths not be in vain.