Archives: Speeches

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.

The plan was that by this time today ((around 4.30pm as I write this)), I should have been arriving at a hotel in Scotland with the rest of the 3 Peaks team to prepare ourselves to tackle the immense 3 Peaks Challenge this weekend.

As we all know, other things happened to get in the way of that.

I’m absolutely gutted that I’m not going to be with Ben, Dave, Gary and my bro this weekend and that I’m not going to feel the immense sense of achievement (and exhaustion) on Sunday morning that I anticipated feeling. What makes it worse is the fact that this is now 2 years in a row when my health has got in the way of the very same challenge, with the very same team of people.

I’ve dealt for many years with the ups and downs of my health, but I’ve always managed to come out of things with a positive spin and so it is with this. Despite thinking that after transplant I wasn’t going to face these kinds of disappointment, I’m finally starting to hear the sense in my own words, spoken at almost every event I speak at: transplant is not a magic bullet, it’s simply exchanging one set of problems for another.

Don’t get me wrong, there is nothing – NOTHING – that I would change about my life right now. Transplant has saved and transformed my life and allowed me to be the person I always wanted (and believed) I could be. It’s allowed me to do all the things I’ve always wanted (and believed I could) do.

Events like the things that have been happening recently serve only to remind me that although I have downsides, so does everyone else. And thanks to my transplants, my troughs are a hell of a lot shallower than before – and than many other people deal with every day – and my peaks are a hell of a lot higher.

So it leaves me simply to suck it up and move right along – knowing in my heart of hearts that not going this weekend is the right decision and knowing that something else will soon come along to excite, entice and energise me as I move forward.

As a result of recent events, my life is going through a lot of changes, but they are all enormously exciting and I know that the best times of my life lay ahead. It’s time to knuckle down, get on with it and start taking my first steps forward to the brave new world to which I’m being introduced.

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.

Today I finally finished my run of 4 talks in 3 weeks with an address to the CF Trust’s regional conference in Oxford.

Rosie, the Chief Exec of the Trust, originally asked my consultant to come along and talk about the adult service, but she couldn’t make it so the baton was passed to me. I love doing talks and things in general, but especially for the Trust. And even more extra-specially when it’s to talk up the amazing team at Oxford who helped keep me alive long enough to reach transplant.

I would pop the text up on here, but it was a 30 minute speech and the text is close-on 3000 words, which is quite a good deal mroe than anyone really wants to read on a blog, but if you really, totally desperately want to read a copy of it, let me know and I can mail it to you.

It went really well – by all accounts so did the entire day – and it seemed to strike the right notes I was trying to hit. It’s always hard to pitch a speech to parents of people with CF, particularly some very young children. You need to make sure you’re not belittling the task that lies ahead, the enormity of dealing with all the crap that life with CF throws at you, but at the same time it’s important to let them know that CF doesn’t strip your life away of all meaning or ability to have fun and it certainly doens’t mean you’re going not going to be able to make something of your life.

I think – I hope – that I managed to pitch it right this time. Certainly all the feedback I received from the day was positive, but then it’s got to be a pretty awful and borderline insulting speech that will make anyone come up to you afterwards and tell you it was rubbish, so it’s good not to get too carried away.

It was nice, though, to have a chance to catch up with the team who came along. Clinic time is so precious I’m always reluctant to stay and chat too long, but today I got there at lunch time with a chance to sit down with them (and my parents, who decided to come along for the day) and have a really good catch up and chat about things – medical and non.

On the way home I developed a killer headache and was running much later than I’d planned, so I had to pull out of a rehearsal visit in Northampton for the project I’m working on with the Royal and instead couldn’t do much more than veg on the sofa and eat a bowl of soup. Really bizarre, hard-core headache, it was, but it doesn’t seem to have recurred as badly since, so it must have been a one off and probably thanks to dyhdration more than anything else. Was a sucky end to the day, but it had been a good one for most of it, so no real complaints.

The third speech in my 3 week, 4 talk period went down really well at the CF Trust fundraiser 1 in 25 Ball at Wokefield Park near Reading.

The full text of my speech, as delivered, is below.

It’s an amazing place, Wokefield Park. You arrive on a long driveway through the golf course, which is lovely but somewhat reliant on them only allowing 10-handicappers on the course, I’d hope. As you approach the hotel, the first thing you come across is the big conference/exectutive centre, which presumably doubles as the club house, too. It’s an odd looking building that’s not unattractive but doesn’t exactly wow you upon arrival. Instead, it’s more of a run-of-the-mill hotel and conference venue in really, really nice grounds.

Having been inside to check in, I’m told we’re actually staying in the other section of the hotel, the Mansion House, where the ball itself is taking place. So we jump in the (new) car and head over to the other part of the grounds, where we round a copse of trees to discover the most beatiful period mansion I think I’ve ever stayed in. With a newly-refurbished and stylishly modern interior, it’s a perfect marriage of old architecture with 21st century functionality.

The bedrooms are something else – huge beds, loads of room and, best of all, a proper rainfall-head shower that I could have stayed in all weekend it was so gorgeous and refreshing.

The ball itself went exceptionally well – we were kindly put on a table of hugely friendly people who made us feel welcome in a room full of 120+ total strangers (save for Jenny, the CF Trust Regional Fundraising Manager who had invited us down). After a slightly cocked-up (time-wise) but delicious dinner, I was given a really quite lovely introduction, cribbed mostly from this blog and the CF Trust’s website and delivered my short speech.

After dinner there was the usual auction and raffle, followed by a brilliantly organised casino of Blackjack and Roulette, where guests could make a donation of £10 to the Trust in return for $100 in play money. Then when all was said and done at the end of the night, the chips were cashed in and the top 5 walked away with a prize.

I spent a little time teaching K how to play Blackjack and nearing the end she spent a lot of time trying to lose all her chips so she could go to bed and ending up actually winning more back. Riding our luck (and knowing that we were far from chip leaders, so seeing no point in diligently saving our meager stack up), we decided to switch to Roulette, which I usually dismiss as a mug’s game.

As it happens, through a careful system of hedging my bets I was a fair bit up coming into the last 5 minutes. Soon, though, it started to dwindle as I got over-confident and bet stupidly, although I suppose that betting in general is an intelligent thing to do, which is a concept many may struggle with. With one spin left, I had eight chips, so to make it exciting I put half on Number 11 (the hottest number of the night) and one on 25 (a number I’d bet near or around several times and lost out on) and with the final spin of the night, the ball dropped in 25!

Much to my amazement, after cashing out, I found myself landed up as the 3rd place chip holder and the happy winner of a lovely case of Spanish wine from the oldest vineyard in Spain. Not bad for a random guess. It’s quite easy to see how addictive gambling could get in those situations, though, so I’m not dashing off to Vegas to get stuck in for real just yet.

After the casino packed up and as the band were hitting their final numbers, we both called it a night and headed to bed, exhausted from the day’s activities.

Here’s the full text of the speech I delivered to the ball guests:

“Good evening, Ladies and Gentlemen. Thanks for having me here tonight. I’d like to thank the organising committee for what has been a great night so far and I’m sure is only about to get better. I’d also like to thank the sponsors of tonight’s event. I wanted to mention you all by name but so many people have been so generous in support us tonight that it would take me all of my speaking slot to go through you one by one, so instead I’ll just offer up a very big and – sorry – generic thank you to everyone who’s helped us to make sure we’re in profit already before we even tackle the auction, raffle or casino. So thank you.

I do this kind of thing quite a lot for the CF Trust. It used to be really easy. Before I had my transplant, I’d turn up at these events dragging an oxygen cylinder behind me – I was on 24-hour oxygen – and looking terrible. I was incredibly skinny, I had really pale skin and horrible, dark rings around my eyes. I’d just stand at the front of the room and say “Look – it’s rubbish” and people would feel sorry for me and pledge loads of money.

Now I’ve had my transplant it’s a whole different ball game. I stand in front of people and say “it’s rubbish” and they think, “It can’t be that bad, he looks great.” At least, I hope they think I look great. But I feel great, I feel better than I’ve ever felt and it means that when I do these events now I actually have to think of something to say!

The CF Trust is very important to me, as you may know. They’ve helped me through some of the toughest times – in fact, the very toughest times – of my life and been there for me throughout. Which is why I like to do things like this. Because apart from getting all dressed up and enjoying a lovely meal, I get a chance to give something back to them for all they’ve given me.

And the work that CF Trust is doing – the gene therapy work that tonight is helping to fund – is vital to helping make sure that people don’t have to go through what I’ve been through. If gene therapy works the way we all hope it’s going to work, it will remove the need for transplants by stopping the lung damage that proves fatal to so many people with CF. It will – hopefully – help to ensure that children being born with CF today have a much better chance of a much longer life than I will ever have.

I consider myself very lucky to have received the gift I did. When I do events like this and I start talking about luck, I always come back to the same story – the story of my friend Claire. Claire was a slightly odd friend in that she was, in fact, an oxygen concentrator. A portable oxygen concentrator. And she was something of a good luck charm. She originally belonged to a friend of mine called Emily, who had a successful double-lung transplant in January 2007. Once she’d recovered, she realised she had no need for Claire any more, so she passed her on to me and, six months later, I received my transplant. Once I’d recovered I, in turn, passed her on to a friend of mine called Sam.

Now, the thing about luck – as I’m sure you’ll all find out later when you hit the casino – is that it runs out. Last year, when I was celebrating my 26th birthday – a birthday I never through I’d see – Sam lost her fight. She died. And no matter how many times I tell this story, I still find it really emotional. Because it’s hard. The reality of the transplant list is that if you’re waiting for double-lungs you’ve got a 50% chance of getting them. Which means 50% of people die while they wait. I realised just last week that I’ve actually known more people who’ve died on the list than who’ve had a successful transplant.

And 50% is quite a good statistic to look at. Take a look around your table now – 50% equates to every other person on your table dying. That’s too many.

And that’s why the work of the CF Trust is so important. The gene therapy research that they’re doing will remove that element of luck from the lives of everyone who has CF. It’s not a cure, but it will work to prevent the lung damage that puts people in a situation where they face such bold statistics.

We all want you to enjoy yourself this evening, we want you to have fun. But we also want you to remember that you’re hear for a reason. You can help the CF Trust remove that element of luck from peoples lives by digging deep and bidding big in the auction and enjoying the casino.

Have a great night, thank you.”