Archives: Media

Media tarting

The highlight of my day was not (surprisingly) the 6 hours I spent in the car driving to Bristol. I do love long car journeys, especially when it gives me a chance to listen to some of my heavily-stacked Podcast queue, but even 6 hours is pushing the enjoyment factor when I’m in the car on my own.

I did however, love chatting to BBC Radio 5Live Breakfast and BBC West Midlands Drive about the rising CF population and the predictions that it could almost double by 2025. Not sure I agree with the numbers entirely, but we know the number of people being born with CF is relatively stable, so the prediction suggests a definite rise in longevity, which can only be a good thing.

This week on Tuesday it was Kerry’s birthday, then Emily’s, then Jess’s. All three of them no longer with us, all three of them succumbing to the ravages of CF and the complications it brings. The fact that we could be looking at a future where no one is dying from CF is incredibly exciting and definitely brought a smile to my face. What better way to mark their birthdays than helping spread the word about our fight to beat CF for good?

The Pros and Cons of Transplant Week

If you follow me on Twitter, you can’t have helped but notice that it’s been a very busy week, with no less than five pieces of media telling my story during transplant week. (Links to follow).

Transplant week is always a special week for me, for very obvious reasons. It’s a chance to harp on about the miracle of organ donation and for me to tell my story to inspire people to have difficult conversations with their family and sign the Organ Donor Register to record their wishes.

It’s also a challenging week. It forces my life into a spotlight, not just in the media, but in my own head as well.

Talking about the difference between pre- to post-transplant me shows just how far I’ve come, but also challenges my perception of my life and what I’ve achieved. It challenges my understanding of the world I live in and it challenges the decisions I’ve made in the years since my transplant.

And here’s what it all comes down to:

I feel a pressure to “succeed” and make a difference that my donor would be proud of.

The funny thing is that I know this is silly. I know there’s no reason for me to feel this way, or for it to leave me feeling inadequate if I haven’t achieved what I feel is “success”. Yet it’s a feeling I can’t shake.

As one very good friend said to me during the week when I voiced this to her, “Your donor will just be happy they’ve allowed you to still be here, regardless of what you’re doing and how successful you are.”

The problem I face is that I don’t know that for sure. Yes, it makes sense. Yes, I can see the logic. But I’ve never met and will never be able to meet my donor, so I don’t know what they think.

That’s why I’ve been so busy this week. That’s why I remain so willing to talk so openly about my transplant journey. That’s why I’ll always take advantage of transplant week. Because it’s the one chance I get to demonstrate just how much this all means to me.

To that end, I’ll be sharing links to the various media hits I had this week here on the blog in the next few days. If you’ve heard them already, thanks for listening. If not, perhaps download them and have a listen in the car or when you’re out for a walk. The two radio interviews are the most in-depth I’ve ever done and in both of them I share some thoughts and stories I’ve never shared publicly before.

And, of course, if you haven’t already, please sign the Organ Donor Register.

Speak with passion, people will listen

This week is National Organ Donor week, or Transplant Week if you’d rather the shorter version.

It’s a massive week for me, a chance to talk about the thing that I am most passionate about and, hopefully, to inspire people to sign the Organ Donor Register.

It’s only Monday morning, but already I’ve had three pieces go out: a short news piece on BBC Radio Northampton, a 3-minute news piece on ITV Anglia and a 15-minute chat on BBC Three Counties Radio yesterday morning.

Whenever I speak about cystic fibrosis or organ donation I know people listen. I’m blessed with both a compelling story and the means to express it. I’m not very good at identifying my own strengths, but I know communication is definitely one of them.

However well I speak or write, though, I know that most of my friends have heard this stuff a million times. Most people I’m connected to on Facebook have been with me throughout my whole journey and know exactly how I feel.

Despite this saturation, and to my surprise, they are still listening to everything I share. I’ve had more engagement on Twitter and Facebook in the last 24-48 hours than I’ve had for the last couple of weeks combined.

Why? Because I’m speaking with passion.

To listen to someone speaking with passion is to hear their words pour from their heart like a dam bursting to give way to the floods behind it. Regardless of whether you agree, more often than not you’ll listen to their arguments because of the force of feeling behind them.

Passion is honest. It’s almost impossible to fake passion, which is why politicians so frequently fall foul of the trap; they try so hard to sound passionate, but the effort always shows and comes across as a lack of sincerity at best, straight-up emotional manipulation at worst.

There is a rawness, a freshness, an authenticity to someone who speaks with passion that can’t be bought or faked. It’s naturally compelling and our ears tune into it without any conscious thought on our part.

I don’t like to bombard people with calls-to-action to sign the Organ Donor Register and talk to their family about their potential death. I recognise that it’s not a subject people much want to discuss. But weeks like this give me a chance to speak with passion about the thing I care most deeply about. So I’m grabbing this opportunity with both hands and I’ll be shouting from the rooftops all week.

You can help by simply sharing this post, or the organ donation link, with your friends so they understand just how important it is for us to stop three people every day dying while they wait for a transplant that doesn’t come in time.

(By the way, have you signed the Organ Donor Register? Do it now!)

Doing My Bit

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.

An eye-opening day

It’s been a really strange day today, giving me a surreal, 3rd-person insight into how my life has changed in the last 13 months.

I was out for the day filming with Emily for the Live Life Then Give Life website – part of our new media project to add even more impact to our life stories by getting the people in question on film.

First port of call was our fabulous advocate (or Fabocate, if you will) Jess, who has been waiting nearly 3-and-a-half years for a double-lung transplant and is now way beyond the “worrying” stage of the wait and headed rapidly downhill. Sitting an interviewing her at her home in Kent, I remember how similar I was last year just weeks before my call – I couldn’t really move around, everything was a struggle and, mentally, I was right on the verge of giving it all up.

She also made me realise, however, just why people find people with CF so inspiring. As I sat and watched her making light of her situation while pausing for enormous, breath-stealing coughing fits, I saw in her something which I suppose many people once saw in me – a determination not to be beaten by something we’d battled for years. More than that, though, I sat there and wondered to myself how on earth I did it.

At the time, you don’t really have a choice, you just get on with it, but looking at it from the outside yesterday I could see just how much hard work it is to stay alive and keep fighting and I was blown away by Jess’s willpower. She’s a phenomenal girl and I hope and pray that she gets the call she so desperately needs now.

By way of total contrast, we left Jess in the mid-afternoon and traveled to Epsom in Surrey to talk to another one of our advocates, Lisa, who is celebrating, like Emily and I, her second Christmas post-transplant. In fact, Lisa, Emily and I were all transplanted in 2007, spreading ourselves through the year – Emily first, in January, Lisa later on and then I brought up the rear in November.

Talking to Lisa I was given chance to reflect on the changes that happen between the state we were all in pre-transplant and the freedom and joy we all feel now it’s behind us. We’re all incredibly lucky people, but it made me realised even more strongly than usual just why we all work so hard to raise the profile of organ donation – this life we’re living now is amazing, remarkable and truly miraculous, but we still lose over a 1000 people who need a transplant every year. That’s more than 10% of the people who are on the waiting list.

It doesn’t have to be like that – we can all help to change it by talking to our loved ones about our wishes and making them talk to their friends and their families and to let everyone know that giving someone the gift of life when you no longer have yours is the greatest thing anyone can do for another human being.

Sign up. And Talk.

The first step

Today marked the start of something more than exciting for me.  Last week, Live Life Then Give Life invested in a new media production package of professional equipment with which to document all the activities we’re involved in, as well a creating short films and videos to play at events and talks being given by any of the trustees or advocates.

Today one of our advocates, the irrepressable Nelly Shah, orgnised one of the 108 World’s Biggest Walks that took place at the same exact time (12noon GMT) in 18 countries over 5 continents.  Emily and I headed down (well, she came up) to Stanmore in Middlesex (just off J4 of the M1) to join her and her family on their 5km walk around Stanmore and Edgeware to raise awareness of organ donation and the chronic shortage of donors, particularly in the black and Asian communities.  Nelly, who’s originally from Kenya, has now been waiting for five-and-a-half years simply because of the dificulty of matching her tissue type with such a small pool of donors.

I took our equipment down and shot my first professional documentary pieces, as well as several interviews, which will go into an awareness-raising, high-impact video package for a talk Emily’s giving next weekend to an audience of over 2000 people from the Tamil community.

It was unbelievably exciting and I’m so amazingly pleased to have been given the opportunity to do this by the guys at Live Life Then Give Life who have placed an enormous amount of trust in me to deliver high-quality product to help the charity achieve its objects.

Of course, that’s only half the task, I now have to assemble the footage into usable pieces – one for the website to promote the walk and one, longer, piece for the talk DVD, which will also include an interview with two parents who have recently lost their 15-month-old son for want of a liver and small bowel.

It has to be said that I do feel a certain amount of pressure to deliver now, as it was me who spent a lot of time and energy researching the equipment and talking to the other trustees about the benefits and pluses of investing in the camera and sound package.  But, to be honest, I’m actually quite enjoying the pressure as it’s been a while since I actually had any pressure on me to achieve anything at all, so it’s nice to have a target.

We only chuffing won it!

I know, I know, I know – it’s been WAY too long since I last updated, but trust me, I’ve been busy.

I will endeavour to find some time over the weekend to give a full and proper account of the, frankly, crazy-busy and pretty momentous events of the last couple of weeks, but I just had to jump on for the last 5 minutes my brain is operating today to shout about Live Life Then Give Life, the award winning charity.

I’ve been somewhat remiss in not talking on here about our recent nomination for a Charity Times Award for Campaigning Team of the Year.  The Charity Times Awards is a prestigious charity-sector awards ceremony that recognises the best in not-for-profit work and those who support chartiable organisations.

Five of our six trustees managed to make it down to the Lancaster Hotel in London last night for the Black Tie dinner at which we were all shocked and delighted to be announced as winners in our catagory.

The judges said in their citation, “This was an outstanding campaign made up of many effective and innovative strands and appraoches, achieveing great sucess.”

We were all amazed to be thought of as the campaigning team of the year, although according to the sponsor there was only ever one winner, which is overwhelming and a great boost for all of us.

We had happily resigned ourselves to making the most of the PR opportunity that being nominated for such a renowned award in only our first year as a charity, so we were all overcome with emotion when we headed up to the stage to collect our awards.

The appalause and good will from the other charities at the ceremony made us realise how well thought of (and how much more well known than we had suspected) Live Life Then Give Life is.

To see Emily, Hal and Jen’s faces as our name was announced (and it’s a picture, let me tell you), check out the video here.

We partied long and hard into the night (although mostly alcohol-free) and came away buzzing.  We have all invested so much personally into this charity since we first got involved with Emily and Emma’s campaign back in 2006 and it’s indescribable what this recognition means to each and every one of us.  We are so aware of all the help we get from our supporters and our advocates, who go out there and tell their stories and help to increase awareness of our desperate need for more donors in this country.

Rest assured, though, we will not be sitting back and feeling chuffed that we’ve done our job now we’ve got an award – if anything, this has motivated each and every one of us to keep ploughing onwards.  In the words of friend, top blogger and independent filmmaking guru, Chris Jones, “Onwards and Upwards”.

I am chilling out – honest

Maybe not as much as I should be after last weeks’ exertions, but I am chilling.  I slept in till 9am today.  (I secretly wanted to sleep till midday, but apart from my Tac alarm getting in the way, my body decided it was awake enough to rise at 9.  I’ve always said my body is an idiot).

Tuesday was a stupidly busy day for us as we were both in London, both for interview.  K had another Uni interview, about which she should hear on Monday and I had a job interview for a Theatrical post in a large, well-known company.  Sadly for me, my lack of West End experienced counted against me, as the job is maternity cover and they wanted someone who can hit the ground running.  That said, I did have a lovely chat with one of the guys who interviewed me today and he said they really liked me and would like to work with me in the future, so that is – as K pointed out – about the best kind of “no” you can get.

Tuesday was doubly hard as our journey home from Tresco was an epic 14-hour affair, leaving the Island at 1pm Monday afternoon and finally getting in to our hotel in London at 3am after a pretty-much non-stop journey on 2 ferries and in 2 separate cars.  4 hours sleep pre-interview is never the best of preparations, but I think we both acquitted ourselves well, as was born out by my response today and, I hope, by K’s on Monday – we’ll see, fingers crossed.

I also got a rather lovely mention by Bill Bryson on Chris Evans’ Radio 2 show on Tuesday (or Wednesday) when he was discussing litter-picking in the UK.  Quite what relation I bear to that I don’t know, but it’s always nice to know someone’s thinking about you, especially when they’re thinking about you on national radio.

Yesterday I was up at 8.30 because some idiot (who may or may not have been me) booked my car in for a service on the day we returned on Tresco/London.  Clever boy.  I bundled myself out of the flat into the early morning (OK, I know it’s not that early, but it felt it, damnit!) and dawdled over to Westcroft with my car, swapped it for the loan car, which, to my annoyance, was running on empty, so scooted over to the petrol station for fuel, pulling up at the pump and promptly stalling, having forgotten I’d switched from Auto to Manual at the garage.

After returning home and trying to stay awake for an hour, I finally succumbed and took myself back to bed, sleeping till 1.30, which I really needed and then spending the rest of the day in my comfy sofa-clothes and watching TV or surfing the ‘net, absolutely refusing to do any work.

Today, after a good, solid night’s sleep, we caught up with our nieces and nephew, who it felt like we hadn’t seen in an age, and their mum and dad (the latter of whom stopped in on his way past during work).  Once the little ones had toddled back off with Mum, the eldest, JJ , stayed with us to get some homework done and have a revision session with K.

Having duped us out of timing her English assignment, we played a couple of games, had lunch, put her nose back to the grindstone and then took her home, following which we stopped in a my ‘rents to collect a CD of photos from the weekend my Dad had made up for us, then shooting on over to Costco with K’s mum to pick up our monthly “big stuff” shop.

Costco really is amazing, but it’s not the world’s greatest place when you’re tired, as K was today and I increasingly became on my way round.  Still, it got done and that’s the main thing.

This evening, after grabbing some food with K’s ‘rents I’ve been trying to catch up on a little email and planning another early night as I have to be up in the morning to take K in to work and then probably ought to be getting on with some work of my own.

The response to Tresco has been absolutely amazing – we’re now nearing £1,500 in sponsorship, which is fantastic, but the number of people who have been moved and inspired by our exploits over the weekend is phenomenal; I really didn’t expect a reaction like this at all.  It’s been more amazing that I could have possibly imagined.  Thank you to everyone who’s sponsored me, emailed me, encouraged me and just generally helped me through the last few months, and the even hard few months that preceded them.

A little bit of rest does you good

That’s what I reckon, so I didn’t go to the gym today.

I’m not skiving, honest, just being careful of my leg and not wanting to work it too hard (click here for more on the Calf of Death – not bovine related).

K, however did go, and now has a nice and shiney new programme of weights workout to add to her regular C-V workout, which is lovely for her. And energetic. It’s my turn to ramp up the weights next, so I’ll be booking myself in when I go for my session tomorrow.

Apart from taking K to the gym, today I actually managed to get a lot of work done, which has made a change. I don’t know quite why, but Durham totally upset the balance of everything as far as work and projects were concerned – I was away for all of 4 days and it’s taken me 7 to catch back up. Weird.

This morning was delightful, though, as I ran K down to Lea’s house to get her hair snipped, which meant I got to spend the morning playing with her delightful little one. I’m trying to ignore the fact that I had to break my self-imposed vow never to watch and/or read and/or know anything about Igglepiggle by reading “All Aboard The Ninky Nonk” a total of 17 times. She liked it, which is the main thing. Me? I still don’t really understand it. Although I think the Tombliboos have something to do with the small personification of evil – that may be reading too much between the lines, though.

Yesterday was equally grand – spending time with our littlest niece and nephew for the little lady’s 3rd birthday. It was amazing to see their little faces light up when we got there and then I spent an hour of the afternoon reading/playing “Where’s My Pants”, which luckily is the book we bought her and not a genuine, house-searching game.

At one point, having to make a quick phone call, I escaped to the top of the stairs to grab myself 5 minutes, only to be spotted and joined, perched on the top step, by both of the littl’uns who proceeded to sit silently by my side while I finished my conversation. Cute isn’t the word. It’s much… well, cuter…

I also had a meeting yesterday with a filmmaker from MK who’s interested in collaborating on a few things. I’ve been looking for people interested in filmmaking around MK to work with on some short film projects to get me back in the groove to work up towards shooting something bigger, but have mostly drawn blanks. Now, happily enough, I’ve made contact with a few people and after this meeting yesterday, I’m hopeful that there’s more guys out there than I first thought.

The thing about filmmaking – and all work in the arts, really – is that it’s so much about the contacts you have and the people you can work with. Part of the reason I’ve had so much fun and success in the Theatre has been thanks to the place I worked enabling me to meet like-minded people and also set-up my partnership with Suze, which is ever-fruitful and enjoyable on so many different levels.

I still keep catching myself and realising just how amazing life is now – I’m still not taking any of it for granted and the most mundane things can get me grinning like and idiot at the fact I’m able to do them. And now to be talking about new projects and planning possibilities is so exciting and gives me so much drive and determination to succeed.

NOTE: for the unobservant among you, the Durham trip has been detailed in back-dated entries for the weekend in question.  They’ve been up about 4 or 5 days now, barring the last day’s worth of notes, which are imminent, I promise….

Getting the word out

Great day today – not only did I get through a second gym session in 2 days with no ill effects (read all about it…), but also found out that I’ve hit the Plymouth Sound website.

Because the Marines are based in Plymouth (and possibly because my bro happens to be dating one of the presenters), the local radio station (I say local, they’re pretty awesome, not like some “locals”  I could speak of….) have picked up on the marathon story and are running pieces not only on air but on their website too.  They’ve even included links to the ODR and my Just Giving page so people can either show their support financially or just by signalling their intention of saving someone’s life after they’re gone.

It’s getting quite exciting this marathon lark.  What with the gym sessions and all, I’m starting to think that being able to run a mile in 6 weeks’ time isn’t necessarily totally beyond my reach.  Not sure how fast I’m going to do it, but then the Marines are going to have done 25 miles and be weighed down with 30lbs of kit, so at least I’m not going to be the only one looking shattered by the whole thing.  Although I think I might feel a little inferior jogging across the line just little ol’ me – I might have to fill a rucksack with polystyrene to make myself blend in more.

I also impressed myself today by being remarkably sensible and going against my all-go post-Tx mood and having a sleep this afternoon.  We’ve had a bit of a busy few days since heading to friends in Kettering on Sunday and having two early-morning hossie appointments for K two days in a row, which has added up to not much sleep and lots of go-ings during the days.  Getting back in from the hossie run to Northampton this morning, I spent a bit of time trying to keep sleep at bay checking my emails and doing some work-y bits and pieces, but in the end decided that if my body says “tired” then to bed I must take it – not point playing games with a body still in recovery.

Pretty smart, huh?