Archives: Friends

After the whirlwind Thursday last week where everything fell into place for my next 3 years of life in a matter of hours, the repercussions hit hard over the weekend.

First off, I wanted to make sure I’d spoken to all the people that matter before plastering the news all over my Facebook and Twitter pages, so I spent a couple of days chasing down all the people who would be directly affected by the decision, including TJ, my wonderful boss at the Grove who helped me enormously by giving me my first job post-transplant with the Youth Theatre there. I also spoke to PC, the YT leader at the Grove, and to a couple of my friends, including a very close friend whose wedding I will now miss as it falls in the middle of my first week at LIPA.

I think what shocked me the most was that not one person sounded let down, disappointed or upset by it at all. The response was uniformly and heart-warmingly brilliant – everyone was so excited that I’ve finally got this chance. As soon as I’d announced it on Facebook I was inundated with messages of support and congratulations and people wishing me well.

Right now I’m more excited than a child on the first Christmas Eve they fully understand the implications of the following day – I’m absolutely loopy about it all. I do, however, have an awful lot to do.

In our wisdom, K and I decided at the start of summer that we needed a really special holiday away to celebrate our new freedom, so we booked ourselves 2 weeks in Hawaii – a truly dream holiday to spend time together, chilling out and relaxing.

Neither of us can wait, but we leave on the 1st September and return on the afternoon of the 13th. I then have to be at LIPA for 9am on the 14th, which is to say the least a bit of a rush. My first day is now no doubt going to pass in a haze of jet-lag and exhaustion, I just hope I can manage to hold some form of conversation with the people I meet.

What it also means is that I have to have everything sorted for uni by the time we leave for Hawaii giving me precisely 12 days from the day I was accepted to square everything from accommodation to finance away. That’s now just 8 days. When we went on holiday to the Caribbean when I was younger, we used to be told numerous times how they consider that “rushing is what mats are made from”. This week I’ve discovered and will no doubt have drummed into me that the same rule does not apply to the UK – and especially not to country-fleeing uni students.

It’s been a pretty rough time of late and, if I’m honest, I’ve been struggling quite a lot. I’ve not really felt like blogging for quite a while as I’ve been battling with my own daemons and not really wanting to share them with anyone else.

Over the last couple of weeks it’s been slowly emerging why I’m feeling like I am and I’ve come to a few realisations that will hopefully put me on the right path for the next little while. Essentially, I realised, I don’t know how to be well.

I’ve spent so many years ducking and diving in and out of hospital, but since May 2008 I’ve not been admitted, not really been unwell, not had a cough, a cold or so much as a bad case of the hiccups. It’s been all plain sailing and that’s not something I’ve really experienced before – my life has always been broken up into chunks of illness and relative wellness.

What this means is that real life is starting to intrude with a vengeance. I’m actually having to start thinking about “the future”, something that’s always been an alien concept to me as I’ve never really believed I’ve had one. I’ve never planned more than a few months in advance because everything’s always been so unpredictable that I couldn’t. Even last year I had to miss the holiday we’d planned because I was hospitalised with CMV. So it’s strange to be forced to sit down and work out just what the future holds for me, for K and for everyone around us.

I’ve been struggling a lot with making the most of my new life, too – I want to do everything I can to honour my donor but right now I don’t feel that I am. I want to challenge myself both physically and mentally and push myself to find where my new boundaries are, so I’m looking at ways of doing that to make a dedicated, concerted effort to make the most of these lungs and to help my donor to smile down on me and feel proud of the life they’ve given me.

It’s been a tough haul over the last month or so and I’ve had to make some really tough decisions and I know I’ve got some really tough ones to come, but I’m starting – slowly – to feel more confident and energised about what’s on it’s way. I will try from now on to keep this blog more up-to-date with what’s happening and, in particular, my thoughts and feelings about things as I know from before my transplant it can actually be pretty therapeutic.

I can’t promise it’s all going to be sunshine and lollypops on here, or that it’ll even end up being that interesting, but I can promise myself that continuing to write “smile through it” may help to remind me of the long-lost days when everything was a chore and I had more to worry about than not having plans for next February.

Here’s to life: living it, loving it and smiling through it.

Apologies for the lack of updates. As a wedding gift to her brother from us, K kindly offered for us to look after their 12 year-old, 4-year-old and 3 year-old for a week while they had a honeymoon just the two of them.

I blithely accepted and agreed without really thinking it through and clearly MASSIVELY underestimating the whole thing. We’re having an awesome time, but we’re both shattered and I’ve hardly managed to get anything for Remembrance done this week, which is a bit rubbish. I’m trying to find us a Casting Director to work with, but since it relies on being able to head to London to meet people, that’ll have to wait until next week instead.

I’m also actively recruiting for the DP role and have a load of showreels to get through to find us the best person for the job, but that’s going pretty slowly too. Am just about to put dinner on so we can all sit and eat together, then I’ll be trying to get through a heap of them tonight.

More updates when things get back to normal at the weekend.

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.

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

Oscar

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.

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!

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!”

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.

Up at 8.15am this morning to head into London with K to drop off her assignments. We decided to make a day of it and thought we’d meet my bro in Town for lunch while we were there.

A 9.46am train from Bletchley – after a minor myriad of parking drama in their new “multi-storey” car park at the station – got us in to Euston just after half ten and into City Uni in Islington around 11am. We did he necessary drop-offs and collection of completed and marked coursework and then repaired to the cafe downstairs to dissect the results, which weren’t what K had hoped for. That said, we subsequently met three of her coursemates who all said that they scored lower than they had hoped and/or expected to and that the piece was particularly difficult.

Didn’t help confidence massively when you see notes in the margin from the tutor marking the piece referring to “applicibility” of something – if the tutor can make up words when summarising an essay, what chance do the students have, really? But that’s just me.

After a cuppa and a quick get-to-know-you chit-chat with some of K’s classmates, she whisked me off on a quick tour of the pertinent parts of the Uni campus, including the way-cool multi-media “pods” that the lecturers use when teaching which have all kinds of awesome high-tech gadgetry in them.

After the tour we headed up to the British Library, grabbing and highly-heathy MacDonald’s lunch on the way, only to discover that the exhibition on Henry VIII we wanted to see isn’t actually open for another 10 days. That’ll teach us to read more carefully.

We wandered back up to Euston with the intention of heading in to Leiscester Square or possibly Oxford Street but a combination of recent lack-of-sleep, extensive walking and half-term foot traffic meant we opted instead just to hop a train home.

Getting back in just after 3pm, I hit the computer for some email clearage before we headed into MK to stop in at Borders. I picked up a couple of bargain DVDs (Children of Men (awesome) and The Diving Bell and The Butterfly (not seen yet)) and K grabbed some reading material. Then we headed over to Waterstones in the Centre:MK to pick up a copy of The Writer’s Tale, a book following Russel T Davies’ creation of his fourth and final season of Dr Who before handing the reins over to Steven Moffat. I’ve so far only read a few pages and I’m already addicted – it’s very open, honest and works to open up the gates on a view of how he writes, something which is hard to find experienced writers talking about. While copying another writing will never work save to make you think very much of their ideas not yours, it’s always interesting to see how someone else approaches things and to realise that you might not be totally barmy after all.

After the book tour and an unsuccessful scout of travel agencies, we hit the cinema for The Boat That Rocks, the best worst film ever of this post’s title.

It’s an extremely bizarre film. It’s hackneyed yet fresh, it’s funny yet corny, it’s laddy yet tender, it’s meaningful yet frivilous. Most of all it’s frustratingly inconsistant – a major plot point (which I won’t divulge save to say it’s the final-reel action beat) moves at various paces from immediate and imminent danger to pausing catastrophe for a tea-break and chat. It leave many, many dramatic beats either unexplored or not followed up, almost like Richard Curtis (he of Four Weddings…, Notting Hill and Love, Actually fame) shot so much stuff he couldn’t choose what to leave in or take out so he closed his eyes and randomly selected scenes to excise.

But despite all of this – things that for almost any other movie I would tear my hair out, shout at the screen and spend 600 words here railing against – I really enjoyed it. It’s funny. It’s emotional, although not as tear-jerking or heavily-sentimental as Love, Actually (the only other of his scripts Curtis has directed himself). And somehow it just works. Just don’t ask me how or why.

So today was the culmination of months of work from on of the LLTGL advocates, Holly Shaw, who’s been taking part in the Channel 4 young people’s campaign show Battlefront pushing Organ Donation. Her campaign – Be A 2 Minute Hero – based on the idea that it takes 2 minutes to sign the organ donor register, the same time it takes to make a decent cup of tea, has really captured the attention of many, many people.

Today alone the online registrations for the organ donor register have increased from the usual average of 200 a day to 3,200! That’s simply insane. It’s one of the biggest jumps the ODR has ever seen online. Not only that but since 1st April, the average sign up rate has risen from 200 per day to nearly 600 per day, another astonishing figure. Of course, the average number increase may be coincidence as it’s not 100% provable, but it’s a pretty staggering coincidence if it is.

Holly has been working incredibly hard for us since before we were a charity so to see her a) well enough, post-tx, to carry out such a massive campaign and undertake such massive amounts of work and b) brave enough to do it all on live TV and recorded for a Channel 4 doc when she wouldn’t even do pre-recorded media when she joined us is absolutely fantastic.

I went down to London after my day on the Easter Project at the Grove (more of which later in the week when I get chance to draw breath) to join the team for a celebratory drinks event to round out the day.

I arrived at 7.30 after a mamouth journey thanks to the frankly apalling service on London Midland, which I won’t get into here because this is a post about Holly and not some total failure of a train company who are staffed by incompetants and provide the worst customer service since Basil Fawlty but without the humour. When I got there the lady in question wasn’t actually there, having been whisked off to the Sky News studios to do a live interview about the day.

This was far from her first media coup for the day, having convinced the Metro to replace the “O” in their masthead with a heart and include a major organ donation story with photo to promote the day, as well as sitting on the sofa with Ben Shepard on this morning’s GM:TV and seeing articles either in or headed for both the Guardian and the Mirror.

When she got back, she also revealed that she’d had a phone call suggesting she look on the PM’s website where, sat at the top of the front page was a headline leading to this article on his support for her campaign. If that’s not a coup, what is?

It was a great evening for mixing, networking and general back-slapping for Holly and her Battlefront team, including Emily from LLTGL who provided invaluable support both in kicking the campaign off just after Holly had her transplant and latterly in seeing the Donor Day through with her all day in Canary Warf.

Holly’s Helpers all over the country set up Donor Desks in their local areas and the numbers from NHS Blood & Transplant go to show just what a difference they all made. It’s an astonishing achievement and I for one am hugely proud.

So, if you’re not already, stop reading this and be a 2 Minute Hero – put the kettle on and sign the organ donor register. Now.