Archives: Charity

I had a meeting with the lovely people at the Duke of Edinburgh’s Award Scheme today, finding out how we might be able to assist people with CF to undertake the award and also how we might be able to support them and all young people taking it on to complete their volunteering section. CF is still a young people’s condition, so it’s vital that we support young people with CF as much as we can, a huge part of which is helping them do things that everyone else does, as well as raising everyone else’s awareness.

It wasn’t until I was sitting across the table from my colleague at lunch just outside Victoria station that I realised the meeting would be in the same building as World Vision UK’s London office – they’re all in the same charity office complex there – and it made me smile to walk the familiar roads up from Victoria to Belgrave road and into the familiar surroundings of the slightly dowdy-building with the always almost friendly security guards.

It did cause me to reflect on the downside of an overly-scheduled day, however, knowing that straight after the meeting I had to head back to Victoria to get back home in time for another meeting in the afternoon. With a little more breathing room in my schedule I’d have had time for serendipity to jump in and lead me back up to that familiar fifth floor to drop in on my old colleagues and catch up. My day was missing the Big Orange today and although the building made me smile, my inability to take advantage of the visit made me just a tiny bit sad.

Last week I wandered down to London to be part of a Parliamentary reception for the CF Trust as part of their CF week celebrations/promotional push. I’m always happy to speak for the Trust because I believe 100% in what they’re doing and hope that, in some small way, my contribution helps to persuade others how valuable their work is.

The CF Trust published this lovely 5 minute video of the event on their website last week, so do take a look. The full text of my speech is below the video. I’d love it if you wanted to connect with me on Twitter or Google+ and let me know what you think.

Hello. I just have to say I love the layout of this event; because you’re all already standing it means I get an automatic standing ovation.

I’m here to give you a personal perspective on CF and transplantation. I was diagnosed with CF at 18 months of age and five and a half years ago, at 25, I received a life-saving double-lung transplant.

It’s far harder for me to convey the horrors of CF than if you were hearing from someone currently enduring them. I used to turn up to speeches dragging an oxygen cylinder and looking like death and tell people it’s rubbish and they would instantly agree. Now it takes a little more nuance.

So, I could stand here and tell you all about a life with CF. I could tell you about the endless rounds of physio, the mountains of medication, the time-sapping regimes of nebulisers and the moral-sapping stays in hospital every few months. I could talk to you about the fear that comes with waking up in the morning and not being able to take a proper breath in.

Or, I could talk about the difference transplant has made to my life – about being able to walk or run up a flight of stairs without stopping halfway for a five minute break to get my breath back. I could talk about how I’ve seen my the 30th birthday no one expected me to see or my wedding day almost a year ago to the day. Or I could talk to you about how it feels to be able to play football with my Godson, to chase my niece or to lift my nephew up for a cuddle.

These are all things I could tell you about, if I had the time.

Instead, let me put this to you: imagine, for a moment, you suffered from a disease where you knew that transplant was your last – and only – option. Imagine being forced to communicate with friends solely through the internet because you can’t be in the same room. Imagine the isolation and the fear and then imagine seeing your friends, slowly but surely, die from the very same thing that is destined to kill you.

That is the reality of a life on the transplant list; it’s a life on pause. That is the reality of day-to-day life with CF: no let-up, no respite, no days off. Just 24/7/365 fear, pain and often despair, mixed with hope, belief and often, a bit of a giggle – we’re known for our dark senses of humour.

Here’s the thing: this is something that we can do something about. If we can increase the number of potential donors in the UK, if we can increase the number of pairs of lungs made viable for transplant, if we better support the teams involved in performing the myriad complex duties of making a transplant happen, we can stop people with CF – my friends – from dying while they wait.

When I was listed for transplant, the stats said I had a 50/50 chance of actually receiving one. With a life-expectancy of less than two years, I lived for two and a half years filled with fear and hope. It’s fantastic to see that people with CF now face 70/30 odds, but they’re not much better than a coin toss.

The real reason I’m here today isn’t to talk about me and my life, but to talk about that 30%. That statistic that represents not just numbers on a list, but real people, real friends of mine and real family of many. That 30% represents people that we can – and we must – do better by. Because their lives are within our power – your power – to save. Thank you.

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.

Sorry for the delay in posting about the awesome Save Jess-tival on Friday night, but it’s been a hectic and exhausting last few days.

Friday was amazing. A stellar line up including headline turns from Natalie Imbruglia and Ed Byrne as well as the fabulous Yeah Yous and Laughter for Life favourite Glenn Wool who unfortunately suffered from some sound issues meaning his set didn’t go down as well as it might have.

The revelation of the day for me, though, was the two singer/songwriters I’d not heard perform before. Susanna Cork is undoubtedly on the verge of great things – she has an amazing voice that’s beyond anything I expected and is a supreme talent. I can’t wait to pick up her album when it comes out and believe me, I’ll be plugging it like mad on here as soon as it streets.

The other half of the amazement came at first-timer Mr Robin K. Already on his Twitter feed he’s been hailed as the next Tim Minchin and on this performance you can clearly see why. Witty, emotional and often hilarious songs coupled with a little stand up in between made for a truly surprise package. Considering this is his first gig and he’s only been writing since the summer, this guy is undoubtedly going just as far as Susanna, albeit in a slightly different direction. You can check him out here.

The day itself was utterly exhausting. I was up at 8.30am to be at the venue for 10am and I worked through with various members of my team to 1am without a break. The crew who came in with their lighting rig and sound systems were brilliant, working far beyond their working time regs should have allowed them and never complaining or kicking up a fuss, just quietly getting things together to make it all happen.

Most importantly of all, our Jess was there throughout and thoroughly enjoyed it by all accounts, even allowing for the minor hiccup in the cab on the way home.

It was great to be working on something like this again, though, as something along the lines of a production/stage manager. It’s been a lot of work over the last 2 weeks, but really worth it for the buzz of pulling off such a massive gig with such big names.

Now it’s onwards and upwards, although downwards on the stage management ladder to ASM Wind in the Willows, which goes into rehearsals next Monday and promises to be challenging on lots of different levels. Can’t wait.

I don’t much like blogging from my phone – it’s a bit tiny to write lengthy missives on (given my propensity for verbosity), but right now I don’t want to wait another day until I can access a computer.

A very good friend of mine and amazing fundraiser and supporter of LLTGL is very, very seriously ill. Like I was, she is waiting for a double lung transplant and has held on despite terrible health for a remarkable 4 years on the waiting list. When you consider that you’re only supposed to be listed when you have a life expectancy of less than 2 years, that shows you how amazingly she’s doing.

Sadly, things aren’t looking great. She was rushed into hospital at the end of the week struggling to breathe and is now reliant on her non-invasive ventilator to keep breathing. Her lungs are quite literally unable to cope with the demands placed on them by constant infection and the ravages of CF that she fights daily.

All of her friends are trying to do everything we can to help, but there’s so little we can do.

One thing at our disposal is the power of words and friendship. As Jess’s friends we are all talking to all of our friends to encourage people to sign the organ donor register and to tell everyone they can to do the same.

If you’re on Twitter, post the above link along with #savejess or tweet about her @Jess_19 and tell people about her.

If you’re on Myspace, Bebo or Facebook, put Jess and the link in your status updates, even link to this page to show people what you’re shouting about.

So much of Jess’s fate now rests with the doctors and medical teams looking after her and her ability to keep fighting. But it also rests on the courageous decision of one single person to give her life after theirs has passed.

Please, please, please do whatever you can to help give Jess the same chance of a better life that I’ve had and am currently making so much of.

Thank you.

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.

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]

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.