Archives: Friends

I’ve just got back from 3 days in Durham where I was asked to talk at an event for the CF Trust for CF Week this week.

It’s an event I first spoke at 3 years ago when I was just 6 months post transplant and it was great to go back to the lovely ladies lunch and share my story so far as well as my hopes and dreams for the future.

The biggest part of my speech was concerned with helping raise funds for the CF Trust, who work tirelessly year-in, year-out to fund clinical research to improve drug therapies, hospital care and overall outcomes for people with CF across the UK.  My hope – as I expressed to the women at the lunch – was that by helping fund the CF Trust’s research into gene therapy and developing a therapy that prevents the eventually-fatal lung damage from CF we can prevent anyone having to go through what I’ve been through.

Not only have I, obviously, been through the hellish wait on the transplant list not knowing whether my call would come in time or if I would die while I wait, but I’ve also had to watch far too many of my friends die while they waited. And now I’m having to watch Tor (who I wrote about most recently in my previous post) endure over twice the wait I went through and see the life and the hope slip in and out of her eyes each and every day.

By donating to the CF Trust this week (or any week), you can make a huge difference to the lives of children being born with this disease today and prevent them ever having to experience the truly devastating side-effects of a life lived in the shadow of an early death.

This time in 4 weeks I should hopefully be nestled in my bed starting two days of recovery from the 3 Peaks Challenge and right now I’m hopeful, a little fearful and very, very tired.

Training has stepped up a notch, there’s all kinds of logistics to organise, a team-meeting with 5 of apparently the busiest people on the planet and I’ve still got to fit in work, quality time with K and a trip to Durham for a fundraiser for this years’ CF Week in aid of the CF Trust, a cause you’ll all know is close to my heart.

Today, though, that all blurred into fairly frank insignificance following Tor’s latest post on her blog following her seventh false alarm call for transplant.  I’ve written before on here about my false alarms, but also about how Tor inspires me to want to do better, to push myself harder and to achieve everything I can while I’m able.

One quote from her post today stood out for me, when she talks about her fears for the future, post-transplant:

I [am] worried that I … could never live a life that was enough to honour my donor.

This is a fear that lives with me every day. It’s not a fear that overwhelms me, but rather motivates me and gives me my ultimate drive to succeed, whether personally, in business or my personal life.

If my donor is looking down on me now, I want them to be proud of me. I want them to feel that they made the right decision in letting me live after they died. I want them to know just how much I value the gift I’ve been given and how I live each and every day in their honour, under their guidance and with their presence always around me.

That’s why I’ve started chasing the dream of the 3 Peaks and it’s why I want to keep pushing myself to do more.

The most common question I get when talking about the 3 Peaks is “Why?”.

I have two answers, both of which are exemplified in things I saw on Twitter today.  Number one (courtesy of the marvellous Sheri Candler):

Number two is this series of Tweets from a very close friend:

Just had call number 5 but no good for me. Gutted.

@Tor87

Feeling awful but thank you for keeping my spirits up, so many lovely friends. Please remember the amazing donor and their family today. x

@Tor87

God this has hit me hard. In lots of pain, breathing awful, body wont work. You cannot imagine.

@Tor87

Not only has Tor had to suffer yet another false alarm, but even while she’s hurting, struggling to breathe and exhausted from over 5 hours of travelling, she’s thinking of others.

And when she says, “You cannot imagine,” she absolutely means it. If you haven’t been there, you cannot possibly understand the rollercoaster of emotions that is involved with a false-alarm; being prepared to have your life changed forever before being told it’s not going to happen. And knowing that if it doesn’t happen today, it may never happen at all.

You want to know why I’m subjecting myself to 24 hours of mountain climbing following 3 months of hard training?

Tor is why.

My body decides that 6.30am is a good wake up time this morning and, as the room is freezing and the wind is rattling the door, any chance I have of convincing myself to go back to sleep is thrown out of the window, so I get up, close the window over lest the same fate should befall the lovely K ((although that’s hardly likely as she sleeps like the dead once she’s nodded off)) and head downstairs.

I make myself a cup of tea with the penultimate tea-bag in the house ((naturally leaving the other for K the tea monster)) and sit down to catch up on emails, news and blogs from the last two days since I’ve been out of the office for most of them. I promptly let my tea go cold and debate whether to walk to the shops but a) it looks freezing outside and b) I’m digging too far into the news blogs to leave my laptop.

By late-morning I’m all caught up on everything I’ve missed and have worked my way through two scripts that were in my To Read pile. I fire off an email of feedback to the writer/director of one of them, but promise myself a second read of the other, since it’s being pitched to me as a possible new producing project and I think it needs a more careful evaluation. ((the first of the scripts is another project i’ve been producing that’s been slowly working through numerous drafts over the last few months)).

K eventually rouses herself and announces (shock of all shocks) that she actually had a good night’s sleep and feels rested and happy – not a common thing for K of a morning. She also informs me that we’re popping next door at 2 to give Wee C ((the neighbour’s 3-year-old)) his delayed Christmas present that various events colluded to prevent us handing over pre-Christmas (or even pre-New Year).

Back from that we take a stroll down the road and pick up some tea and milk, then K hits the sofa to dig into some statistics homework while I clean up the kitchen, including mopping the floor from Thursday’s jumping cider incident (it’s been a bit sticky since).

That done, I head upstairs and have a chill out in the bath, followed by some relaxation, then make a few phone calls that I needed to catch up on, including chasing up a commission that came my way yesterday.

Phone calls finished, I try (and fail) to wrap my head around K’s statistics stuff to see if I can be of any help, but drawing a blank on that I instead fall back on my dinner-cooking talents and rustle up some griddled pork and accompaniments.

After dinner, K hits the sofa again and I head up to the office to check messages and update the blog. When K’s brain has exhausted itself and her mind is a whirl of statistical mess we play a quick game of Bananagrams before heading to the movie room and throwing in the original BBC STATE OF PLAY series, which K’s never seen. I realise I’ve forgotten just how much I love this show as we get through two hour-long eps back-to-back and could quite easily have stayed up and got through all 6 in one straight marathon, but I’m keen for K to rest up before Uni starts on Monday, so I drag us both to bed for sleep.

The alarm wakes me at 8am, which is the latest I’ve been up all week (I figure I deserve it). I get out of bed, shower and rouse K so we can make our 9.35 train to London.

We get in to Town and K heads off to Angel to Uni, where she’s meeting her study group to polish up their joint project while I head down to Waterloo to meet up with HC, a filmmaker friend of mine. It’s good to finally see her as we live a life of constant “we must meet up” messages and rarely manage to find time that both of us are free to actually do it.

We pick each other’s brains about various work-related thing, as well as chatting about new projects we have on and our hopes and plans for 2011. The hour-and-change we spend in a lovely little South Bank café ((Earl Grey for her, green tea for me, both served in little bowls)) passes way too quickly before I’m back on a tube and headed North to Angel.

I meet K to accompany her to a meeting with her Uni that she’s organised to try to sort out arrangements for her placement this term, which goes very positively and we’re in and out inside half-an-hour.

K smuggles me in to the uni library using one of her study-mates passes and I stick my head into their room to say hello to the group and thank Sc for her card. They carry on working and I sit in the main library study area and battle (unsuccessfully) with the WiFi before giving up and settle into preparing a business plan for the new project I’m working on with CR that doesn’t require ‘net accesses.

While I’m working I get an email from a Twitter contact who was involved in Danny Lacey’s LOVE LIKE HERS offering me a Line/Co-Producer role on her new short. As it’s on my Blackberry, I can’t read the script, but I file it away to come back to later once I’ve got chance to access the ‘net and read it.

I also get an email from THE PRODUCTION OFFICE commissioning me for 12 new eps of THE LOWDOWN for them this year, which is a really nice boost. I’ve had great feedback in the past on the videos I’ve done for the show and it’s always flattering to be asked to come back and do it again. I accept without hesitation.

When K wraps up her study group, I pack up my things and we stroll back up to Angel and grab the tube to St Pancras, where we’ve just missed a train home. There’s one every half-hour, though, so it’s not the end of the world and we hit Foyles bookshop to kill some time, with me wading through the business section as a bit of market research.

We hop the train and ride some, K zoning out with tiredness while I read an eBook on her iPad for the first time. I’m impressed at how nice it is to read on it, as I’ve only used it for games and “useful” apps before. The workflow for reading PDFs is a little fiddly, but once they’re on there, it’s great.

We get home and swing by KFC for K and I whip myself up some chicken mayo sandwiches from the leftovers in the fridge ((K’s not a sandwiches kinda girl)). We watch some SIMPSONS while we eat, then head up to the movie room and the PS3 to stream the first ep of FAMOUS AND FEARLESS that we missed on Monday, which we jump through the key moments of before coming back down to tonight’s Sky+’d final. It’s such an odd show – potential to be very, very good, but the live studio format necessitates quite a lot of padding. That said, if it weren’t live it wouldn’t have the same edge to it, so it’s a bit of a conundrum for the producers. It’s great to see Chris Evans doing good TV again, though – I miss TFI FRIDAY.

It’s late once F&F is over (well done Charley Boorman) and we take ourselves off to bed where I read for all of 10 minutes before conking out.

New Year started, as most do, at midnight. K & I were down at the Black Bottom Club in Northampton for the second year running. This year was a little different, with a rocking indie band as opposed to the more chilled jazz band of last year. Different, but not worse.

After seeing in 2011 we eventually rolled back home after a detour to drop S&G off at theirs around 2.30am. I drove, which meant sobriety for me, but K was not so hampered by the restrictions of driving laws and just about managed the stairs to bed before crashing out.

Being in bed after 3am, I was pretty disappointed that my body decided to wake me at 10am. Granted, 10am is a pretty good lie in for me, but I felt like I could do with at least a couple more hours.

I get up, grab some brekkie and make some tea and sack out on the movie room sofa to explore the 007 game K picked up for me this week to go with the free PS3 she got on her new phone contract just before Christmas. I get one stage in (the pre-credit sequence) before her ladyship awakes and comes to join me.

I shut the PS3 off and come downstairs, making us both tea. We opt for a movie and flick through the Sky planner, eventually settling on SAVE THE TIGER, a Jack Lemmon flick from the 70’s that neither of us have seen or heard of. Turns out to be pretty good, but halfway through K’s not liking it and heads off to catch some more Zzz’s. I finish the flick while updating the blog and being sure to pimp it on Twitter before shutting down to head up for some kip myself.

I realise as I’m getting upstairs that I’m not actually tired enough to sleep, so I wonder what to do with myself. I to-and-fro up and down the stairs, make some coffee and a cuppa for the not-sleeping-either K and leave her to try out her new Mario 25th Anniversary edition game on the Wii.  I head upstairs to the movie room and throw on WAR OF THE WORLDS as background while I do some stuff online.

No sooner is it on, however, than I change my mind and decide it’s about time I sort the DVD collection out. It’s been randomly thrown on shelves since we moved in August and it drives me nuts having to hunt out the film I want to watch when I used to be able to grab it from my stack without a bother in the flat.

I empty the shelves and discover I’ve got enough DVDs to entirely cover the floor and I set about constructing a heavily-geeked up system of storage, based on genre, director and other random categories.

Around 4,30 I finish up the sort, although still with minor adjustments to be made, and jump into the shower before we head over to my ‘rents for a New Year’s dinner of roast lamb with all the trimmings. Awesome meal down, we chill with the ‘rents and play some Bananagrams ((an awesome game that both Mum and I bought for presents this Christmas, based on our deep love of playing a friend’s version)) before heading back to ours and getting in just after 9.

K retreats to bed, nursing a delayed hangover and over-eating-itis ((a sad curse of my Mum’s extraordinary cooking)), while I jump on the corner sofa downstairs, legs up, old episodes of ED from Sky+ playing the background while I download the NYE pics and write this, the very first ‘new’ post on the combined archive blog.

I note my paunch staring at me as a look down on the laptop screen and realise just how important my fitness goals for this year are. The belly will be banished.

Despite aiming for a 2 ep max, I end up on the sofa until nearly 1.30am at which point, 5 eps in to a mini-ED-a-thon, I close up shop and head upstairs.

It’s been a while. In truth, I didn’t want to blog until I could find something positive to put down on these pages. And after a month like January, that’s been very, very hard work.

In addition to the funeral of K’s aunt, who died in late December, this month has seen us lose Jess (as detailed in my previous post) and then, last week, a very close friend’s baby brother, too. It’s been an absolutely heart-wrenching start to the year, especially after 2010 began with such excitement and promise.

I’ve also been hinting and nodding towards a new project which was supposed to be up and running by the end of January, that still hasn’t taken off. However, the reasons for that delay are more exciting than they are dispiriting, but all the more frustrating that I can’t share any details of what’s happening just yet.

One element of the project I can talk about is the attempt – along with my band of merry men – to complete the 3 Peaks Challenge in May this year, the weekend before my 28th birthday. It’s a truly daunting task and the most common reaction I get when I tell people about it is, “Why?”.

So I’ll tell you all now to prevent the mass of comments and emails about it following this post: because I can. Because I’m now able to push myself physically; because I’m able to see what my mental strength can carry me through; because I survived when others didn’t and have been given the perfect opportunity to do the things I want to do; because I can help to show the world just what an amazing difference organ donation can make to someone’s life.

This time three years ago, I was still recovering from Christmas and wondering if I’d see my 25th birthday. From then to now I’ve been able to go the kinds of things I only ever dreamed of and pushing myself physically and mentally through the toughest of challenges is something I’ve always wanted to do. And now I can.

There will be more details on the Challenge itself as well as the wider project as things progress, but today felt like a good day to sit myself down, slap myself round the face, pull myself out of my funk and start moving forward with the gift that is another year of life. Today was my first session at the gym in preparation for the 3 Peaks and it hurt like hell – but the pain of physical endeavour pales in comparison to the pain that my friends and their families have been through in the last month.

This is for everyone who can’t, everyone who wants to and everyone who never will achieve their dreams.

The turn of 2010 was filled with so much promise. Despite the difficulties of 2009, the challenges, the ups and downs, I’ve been incredibly excited about the prospects for the new year. And I still am.

But not all great things can come to pass and, following my previous post, most of you will now be aware that Jess lost her fight late on Tuesday night. After four years on the waiting list (two years longer than anyone ought to survive after being listed), Jess was just too weak to stand up to the rigours of the massive transplant surgery she underwent at the end of December.

A fighter to the last, she was up and about late last week, starting to be moved around by the physio, but she was hit by insurmountable post-transplant complications that her body just couldn’t cope with. She died peacefully with her family by her side.

Tributes have been pouring in on Facebook, Twitter and all over the news pages and TV channels which followed her story so closely. Many, many people have been affected by Jess, some who never even met her. Everyone is now feeling the overwhelming sadness and sense of lost that is infinitely magnified for her family.

Jess death will not be in vain, that much is clear. Despite the grief throughout the community, campaigners who’ve worked with and alongside Jess have already got their heads down pushing forward into new plans, ideas and ways to ensure that no one in the future has to wait until their too ill to receive a transplant.

As for me, the pain of losing two friends in two months is strong, but not as strong as my determination to make the most of the new life I’ve been given. The new project I’ve been working on for the last couple of months is finally coming to fruition and I’m pulling together several strands of things I’ve always wanted to do.

Here’s to a 2010 that serves not only to bring health, joy and happiness to all of us, but also to honour the memory of all those we’ve lost. Take care of yourself and remember to try – hard as it my be – to smile through it.

On Sunday night I went to bed with my phone on and next to my pillow. I was fully expecting a midnight text to tell me that our wonderful fighter Jess had finally lost her battle after dragging herself through one last Christmas.

In the middle of the night – just after midnight, in fact – the phone did indeed buzz. I fumbled around, picked it up and read the message.

“Jess is having her transplant NOW”

I came on here this morning to leave a message about everything that’s happened with Jess in the last few days, but in fact my friend Sarah has beaten me to it and written such a concise and accurate blog detailing the events, emotions and thanks that we have all felt over the last few days that instead of trying to rehash it badly, I’m just going to send you over there to read about it. It’s also worth taking a look at the previous post as well, detailing as it does a family’s first Christmas together thanks to the wonder of organ donation.

Spare a thought as you read this for the family who have suffered the worst of Christmases and keep Jess in your thoughts and prayers. Although she’s finally been given her gift, she’s got a long road ahead of her and there are no guarantees. But one thing we all know is that she wouldn’t be with us now were it not for her call finally coming after more than four years of waiting.

I’ve been struck again by one of my intermittent bouts of insomnia and have – as usual on nights like this – found myself sitting and contemplating all around me.

In particular, I’ve been reading back over this blog entry from the summer and going back through the last few months on my Facebook. I wanted to break into the “real world” and do something that felt like a tribute to my donor. I know now that the decision to go to Liverpool was made in haste and a fog of ambition and clouded judgement.

I can’t regret that decision, though, as it’s left me in a place now that’s so much happier than I was before I left. Being away has made me realise what it is I want to do, but more than that it’s shown me that I have the knowledge, drive and courage to pursue it.

I’m immensely lucky to be surrounded my my wonderful family, my always-supportive friends and, of course, my wonderful K. Since getting back from Liverpool I’ve been happier in my life, my house and my skin that I can remember for a long time.

At the same time, thinking about the future has made me think about all those around the world less lucky than me. I lost my friend Jo just a few short weeks ago and said my final goodbyes last week and knowing that her family face Christmas without her is heart-wrenching. Added to which I’ve got one friend in hospital over Christmas, another friend’s baby brother in intensive care and two more friends facing the very real possibility that this will be their last Christmas if their transplant doesn’t come in time.

This time last year, my brother was fighting in Afghanistan in one of the longest and most protracted operations of our combat there. On Christmas Eve, in an experience I’ve never had before, I was overcome by emotion during the midnight service thinking about him and the dangers he was facing. Without realising, and something I can only attribute to the kind of sibling bond I’ve always derided, I woke on Christmas morning to a phone call from my parents to say that he’d lost one of his closest friends right by his side that night.

In truth, despite our hardships, my family is undoubtedly one of the luckiest and most blessed in the world. I’ve fought and won battles within my own body and been lucky enough to be given a second chance at life. My mum has battled her own illnesses and come through with flying colours and my bro has fought and survived one of what is turning out to be the bloodiest wars in decades for the British Armed Forces.

I’ve been blessed by so much happiness in my life and as Christmas approaches with people living in fear, in hope and in grief, I realise more than ever that now I know where I’m going, it’s time to put the pedal to the metal and get my arse there.

I can’t wait to get started. Here’s hoping that the New Year brings all of us the things we want most in life and, should it fail to and instead present us with more, deeper challenges, may we all have the strength to fight, battle and rail against them and emerge victorious this time next year.

As a wise man once prayed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Merry Christmas to you all, and a Happy, Healthy, New Year.