Thursday, December 31, 2009

Firstly, Merry Christmas everyone! I hope everyone had a Christmas full of laughter, fun and merriment.

I had a wonderful Christmas; our family have these traditions which we’ve done since I can remember and which are described beautifully by my sister here. It’s very much a family affair, which I love, and which I feel Christmas should be. However this blog isn’t really going to be about me, it’s going to be about Jess.

The week before Christmas, Jess was admitted to hospital through her local A&E. She was a poorly girl, and as we got closer to the 25th, it became apparent that she would not be well enough to return home for Christmas day. Following a long chat on the phone, Sarah and I decided that if she couldn’t go home for Christmas, Christmas would have to come to her. We contacted as many of her online friends as we could (in a short and hurried space of time) and donations came flooding in. People wanted to contribute to Jess’ Christmas day; I think the unspoken but shared emotion was that it could well be her last.

I met Sarah, along with her girls Hope and Ellie, up at the hospital, with bags of beautiful decorations, luxury food items, and presents, all paid for by caring folk from the CF and Transplant communities.
Jess' pink purple sparkly Christmas tree

Fairy lights and Christmas nibbles.

There’s a little video that you can view here (if you are a facebook user) of us decorating the room.

Jess really was a very poorly girl, and a few days after Christmas, I got a phone call from her mum saying she had taken a turn for the worse. Four and a half years of waiting and her body was running out of steam; we were out of time.

That night, something incredible happened. Somewhere out there, a family suffered the unthinkable and lost someone they loved. And at that moment, in that time of grief, they decided to consent to their loved ones organs being donated. Jess was called, and the transplant went ahead. I suspect if it hadn’t, I would have been making some very hard phone calls to our mutual friends over the next day or so.

As I have mentioned before, I am not religious. I do not believe in prayer (although I very much appreciate why people do it; feeling helpless is pretty horrible), but I do believe in the power of people. I think it is incredible that so many people have shown so much love and caring for Jess, and have fought for her and along side her all this way. I think it is magical that people at such a horrific time of grief can be big enough to think of others and to hope that through their personal tragedy, some good may emerge. I think it is astounding that Jess has managed to fight this hard, for so long, and survive the impossible. I think people are amazing.

It is very early days for Jess, and she still has a long way to go, but there is a shared feeling of relief all round. She now has a chance, the chance that she’d desperately hoped for and clung on to. All thanks to someone quite ordinary, who never met her, who chose to do something amazing and signed the Organ Donor Register.

Wishing you all a happy and healthy 2010, with one final quote which I look to again and again and will continue to aim towards next year:

"be the change you want to see in the world."

Tuesday, December 08, 2009

So that was back in 2005. Now to last Friday’s events...

The evening was in support of the Millennium Mum’s campaign and invitees were various very active twitter folk (don’t know what twitter is? Check it out, this is my profile). I had my recorder class that afternoon (teaching not learning) and the kids were very over-excited when I told them just why I was wearing a posh frock and suit jacket. I met Sarah beforehand and we walked through the gates together and up to the door of number 10. The sign had been changed to mark the occasion and the Christmas tree was beautiful.

The Love Actually representation of Number 10 is actually fairly accurate! We queued up to get our name badges and I was a tad over excited to see various celeb tweeters on the guestlist. I was pretty determined to network as much as I could (why waste a good opportunity) and so moved round the room chatting to various people. Oli Barrett – Holly’s mentor for her Gift of Life Battlefront campaign was there and did a fantastic job of introducing us to as many people as he could (Thanks Oli!).

We were mingling and chatting when there was a clinking of glasses and shushing as Sarah Brown stepped forwards to talk. She thanked everyone for coming and explained about the Millennium Mum’s campaign and why she was so passionate about it. She then told the assembled that one of the guests was very kindly going to sing for us – the fabulous Beverley Knight! I hadn’t even realised she was there at this point immediately sought her out to thank her for her support in retweeting pretty much every message we went out about the Save Jess campaign. She was lovely, so down to earth, and we chatted for quite a while. She sang “Shoulda Woulda Coulda” and “Gold” with just a piano to accompany her and it was incredible; it brought tears to my eyes. She spoke briefly in between her two songs of her love of twitter, and mentioned the Save Jess campaign then! The woman is a legend.

It was so lovely to get to chat to Sarah Brown and show her how well I was doing. Later on in the evening, Gordon Brown joined her and looked genuinely delighted to see me standing and chatting and looking so well. We had a pic taken with them which amuses me greatly as I think it looks like a family photo!

We chatted to lots of other people including Location Location Location's Kirstie Allsopp (who has been tweeting about organ donation today) and Brian Friedman - X Factor choreographer - (who was really lovely and showed us his US driving licence which has a clear orange circle saying “donor” to mark his wishes – made me think we need a similar clear marker on UK ones...)

The biggest highlight for me? The fact I was standing up, I was walking around chatting and laughing and the only things to be aching were my feet. Whenever I return to somewhere or something I did with my old lungs, it reminds me just how far I’ve come. I’m such a lucky girl, I really really am.

All images courtesy of

Monday, December 07, 2009

"Can you take me to Downing Street please?" I said as I jumped in the cab at Waterloo. The cabby, clearly somewhat disbelieving repeated it for confirmation before we set off.

Yep, it's time for me to blog about last Friday evening, when I attended the Downing Tweet Christmas party hosted by Sarah Brown. I am incredibly slow off the mark here as Sarah and Holly have both already written fabulous blogs about this. First of all I want to take you back to November 2005, which is the first time I went to Downing Street, that time, to number 11.

I'd been asked by the CF Trust if I'd do a speech at their 40th anniversary do which Gordon Brown would be hosting at number 11. I was hugely over excited and had bought new shoes and everything (well in advance - a rarity for me) when the week before my already poor lung function took a dive and I was admitted to the Bristol Royal Infirmary. I was feeling really pretty rough, and requiring oxygen throughout the day, something I'd never needed before, but my wonderful team listened to my pleadings (or rather demands) and promised me they'd get me well enough to do my speech.

Everyone worked so hard to ensure I'd be able to get there; oxygen cylinders (a new addition to my entourage at this point) were ordered, taxis booked and a wheelchair borrowed. A day of complete bedrest ensued, followed by tiring and slow attempts to put on my clothes and sort out my hair and make-up, having to sit down at intervals to catch my breath. I was exhausted by the time I was ready, and promptly fell asleep in the taxi, the oxygen helping me catch my breath as I dozed. We picked A up en route and went straight to Downing Street, where Taxi driver and A were searched (amusingly I wasn’t – I can only assume it was a moment of PC going too far) and we were ushered into number 11.

Being new to the whole concept, I refused to take my oxygen in with me and left it in the taxi (how reasonable). I stayed seated as much as possible and did a lot of listening to people chat, in order to conserve my energy ready for my speech. When it was my turn, I stood, somewhat nervously, at the top of the room, Rosie Barnes on one side, Gordon Brown on the other. I cannot remember the speech I made, but I do know that it made people cry. That is the design of my talks; to hit people hard, people who have no experience of CF, and to make them see just why these funds are so vital.

After my speech, I quickly located my chair so I could sit down. People were congratulating and thanking me and there were so many interesting people to talk to but my chest was aching and I felt so tired. In all honestly I was relieved when it was time to go; as soon as I got to the car I grabbed my oxygen and felt my lungs relax as the effort to breathe was reduced. It was an incredible but exhausting day, one which my mind desperately wanted to participate in, but my body did not. I fell asleep very quickly and slept all the way back to Bristol, where I was returned to my hospital bed. I never dreamt I’d get to go to Downing Street again, and how different an experience it would be with lungs that work...

Thursday, December 03, 2009

Rediculously quick blog with only one real point to it.

A very nice guy called Rob contacted me last month and asked if he could do a 3 minute documentary about me for Channel 4's 3 minute wonders. It was for entry in a competition they're running called "It's good to know..."

The film is now finished and up on 4docs website. It is deliberately hard-hitting so just be warned before viewing! If you can, pretty please can you register so that you can "love" it (by clicking the tab with the heart next to the screen) - the more love it gets, the higher up the list it goes. The winning documentary will be shown on Channel 4. You can view it by clicking here. Massive thanks to everyone who has already viewed and sent such lovely supportive messages; I really do appreciate it.