Thursday, September 25, 2008

Channel Four are doing a programme called Battlefront where young campaigners are fighting hard to get their cause featured. 19 have been picked and there is one space left.

LLTGL Advocate Holly Shaw, has had her "Gift of Life" campaign idea accepted! And now it's over to us.

Channel 4 are going to pick the most popular campaign to go through to their final group, with their favourite ones being featured on the Battlefront TV programme.

To vote people have to do is visit the website above and click on "Vote". That's it! No need to register or anything else. So please, for the love of pie, vote, pass this on, spread the word, hassle friends/work colleagues etc.

Holly has a disadvantage in that she has only just got her campaign on the website and voting ends next week (1st October). So we are asking as many people as possible to put a link up about this on their websites, Myspaces, Facebooks, etc. so we can get this campaign on channel 4.

Really appreciate any help anyone can give - it would be such a shame for Channel four to run this thing without anything about organ donation whatsoever...

Monday, September 22, 2008

I am still on a total high from Thursday night and can’t quite believe that we won. We are an award-winning charity. LLTGL are the Campaigning Team of the Year. It all just seems too incredible to contemplate. It seems like only yesterday Emma and I were sitting surrounded by thousands and thousands of plain T-shirts, trying to decide the best ones to use, completely unaware that what we were about to start was going to grow to be so huge.

On Thursday, me, Emma, Oli, Jen and Hal attended the Charity Awards 2008, knowing we were finalists in the Campaigning Team of the Year category. We were all totally over excited but figured that we wouldn’t win (see some of the competition to see why!) but the experience would be amazing.

The Royal Lancaster looked beautiful and everyone was beautifully dressed and buzzing with excitement. We were by far the youngest Charity there. Oli and I looked at the table plan and started giggling. We were table number 37....of 37. Right at the very back. Clearly we were not going to win as the winners had to make their way up onto the stage to collect their award.

Everyone was asked to take their seats and dinner was served. Unfortunately (and presumably due to the amount of foods which are on my “not allowed” list) I was served a plate of fruit as a starter, however the main (guinea fowl) and pudding (chocolate) were gorgeous. We were on a table with the Football Foundation and GAM, both of whom were lovely.

As you will have seen by the video clip by now, we genuinely didn’t think we would win. That shake of the head I give just prior to the announcement is to Emma, as just before that the charity who had received “Highly Commended” had been announced and that was what I was hoping we might get.

From then on it’s all a bit of a blur. We headed up to get our award, people cheering all round the room, and when we got onto the stage I grabbed the host and said burbled something about how most of us were transplant recipients. Unintentionally this outburst got me 20 seconds on the mic to the entire audience, which means we were the only charity who was allowed to speak during the whole ceremony! (How’s that for PR...).

The rest of the evening was just fantastic. People from other charities and organisations were coming up and congratulating us; everyone was so sweet and so touched by our charity and our backgrounds. It was a truly amazing night, and I think I can safely say that we all felt incredibly privileged to be there. It also reminded me how strong we are as a charity; we have virtually no funding, we have no employees, we do everything ourselves and everything on a voluntary basis. Yet all round the country, people know who we are and are cheering us on.

Live Life Then Give Life is an award-winning charity. And we are well and truly here to stay.

Friday, September 19, 2008

I will write all about it later but for now take a look at this (speakers on).

The winning Campaign Team of the Year is announced.


Thursday, September 18, 2008

So I'm sitting by my computer, doing some work on intoto (plug plug plug) when the phone goes. I answered, and there was just a muffled silence. After saying hello a few times I began to get a little worried; there were rustling noises and I could hear someone but couldn't work out what they were saying.

Was I being stalked? Why wouldn't this person hang up or answer? My imagination began to run wild (I've been watching too much CSI recently) and I got up to make my way to the kitchen to find rolling-pin-type-weapon or similar when I noticed my mobile (which I had been sitting on) was lit up with "Home" on the screen...

In other, more intelligent sounding news, we are off to the Charity Awards tonight. We are up for Campaigning Team of the Year. Looking at the competition I think it's unlikely we'll win (we're tiny compared to the other Charities!) but what an honour to even get to go! Wish us luck and watch this space for all the gossip....

ps - I typed dappy blonde into google image search to find a pic to accompany this tale and was less than impressed that result number 7 is in fact, me. Well my feet. Perhaps I should take the hint.

Wednesday, September 10, 2008

OK so a slightly longer break than I promised - oops - but life is hectic (in a good way :))

So, Sunday...

We were all rather apprehensive due to the utterly dismal weather which is making it feel more like winter than the end of summer, but I was determined to complete the course no matter how hard it was bucketing with rain; I even brought my spotty brolly along just in case. Due to a) a lack of time b) a lack of imagination and c) the fact I wanted to wear it again, I was once more donned in my bright pink fairydresswithsparklesandeverything. On arrival we trudged across the muddy field to the CF Stand, where we were supposed to meet the other CF angels. Due to cold weather and slight disorganisation this year, we managed to miss most of the other Angels but a small group of us did manage to head towards the starting line together.

As always, I was totally over excited. I love the day at Hyde park; it’s the only opportunity you get to see other CFers and CF supporters (outdoors being the lowest risk) and it’s just so nice to be able to wave to the people who support you constantly, through virtual means, but the support is no less real. I was bouncing round chirping at everyone (on reflection it was possibly a tad too early in the morning to be so awake) and whooping so much I was in danger of wearing myself out before the race even started.

After posing for a few pics and chatting to the lovely CF Trust people manning the stall, we headed for the start line. Well actually, being in the slowest group (there was no way I was going to try and imagine I could run the whole thing and hold all the proper runners up by being in the wrong category) we were about half a kilometre back from the start line, and we weaved our way amongst thousands of other brightly coloured ladies, all eager to get started. I’ve said so before but I just love this day so much – the human spirit it brings out is inspirational to witness. People running for friends, for family, for those fighting illness, for those lost, everyone together, wanting to spur each other on and wanting to cross that finish line.

We finally crossed the start line 20 minutes after the start gun had gone off (and amusingly 5 minutes after the winner had completed the course) and with much whooping and cheering we were on our way. We set off at quite a pace, jogging past others, but I quickly felt my lack of diaphragm kick in. Actually I must admit I did not train nearly enough, but my stamina is now quite good, my ability to speed up remains about the same as a year ago. Consequently I lost my puff quite early on but was determined not to slow down past a strong powerwalk. As others moved forward to keep to their own pace, my mummy and sisters stayed by my side and we marched swiftly on, me grasping my mum’s hand and pursing my lips hard (just like I was taught at the Brompton – I hope my physios would be proud!)

I knew we were definitely moving faster than we had done a year ago, and each K marker we passed boosted my confidence that bit more. At times I found it a bit frustrating; I feel so well now and feel like I could just run, but need to accept that my body can’t do everything and running is one of the things it still struggles with. Due to the hideous weather, there were very few people marking the route to cheer us on, however those there were shouting encouragement and you could see the affect it had, everyone definitely moved quicker past groups of supporters than they did at quieter parts of the course.

We continued to weave our way along, power walking and jogging intermittently, and I was beginning to get very hot and sweaty (will choose to ignore any suggestions that inappropriate clothing played any part in this). Suddenly I recognised a hill ahead and realised we were nearly at the point at which I got out of my wheelchair to walk two years ago. We quickened our pace and as the final corner came into view, broke into a run. I could feel my heart thudding in my chest as my lungs tried to keep up with my enthusiasm, and as if realising I was struggling, my family grabbed my hands and we ran forward in a line. I was gasping (and fairly dizzy) as the finish came into view but crossed it at almost exactly 53 minutes.

53 minutes!! I couldn't believe it. I was hoping to come in around the hour but that is way better than I imagined. And even more importantly it was a struggle, and I wanted it to be a challenge as, well, otherwise I can’t really justify asking for sponsorship! Overjoyed and exhausted, we headed back to the CF Trust stand to congratulate fellow runners. Unfortunately the weather was just far too cold for a picnic, so we returned home fairly swiftly.

My legs have been aching like anything since but ohmygoodness I love that feeling! It’s as if I did something real and sporty (I can pretend can’t I?!) and even better my lungs feel fine and did do within minutes of me stopping. I think I will always do the Hyde Park 5k, every year, for as long as I can, because it was my first ever race and because it will always remain so dear to my heart as witness of my transformation into a new life with new lungs.



Still time to here to do so!

Monday, September 08, 2008

I have a fair bit to write about after a rather incredible weekend so this may well turn into quite a long un.

On Saturday, LLTGL was invited to a ceremony by a fellow charity named BODY (British Organ Donor Society). I will now shamefully admit that I hadn’t paid much attention; I knew they were dedicating a tree to our charity as recognition and I knew that Oli and I had said we’d go as let’s face it if a fellow charity is recognising your work then that’s the least you can do. What I had not realised is that the day consisted of so much more than that. That it was an annual church service of thanksgiving for donors, that it had been going on for 22 years, and that it would have an incredibly strong emotional impact on me.

The service was held in Wimpole National Trust (which is a beautiful place incidentally) in Cambridge so it was a fairly long drive and I felt a bit hot and bothered by the time I got there. We found the marquee fairly quickly and introduced ourselves to the small gathering there. I wandered off to look at the display boards set up round the outskirts of the marquee, and it began to hit me just what kind of day this was. There were little cards with messages from donor families to their loved ones and from recipients to the donors they’ll never meet stuck up in rows. There were lists of names, hundreds of names, of donors, people who are now gone but thanks to whom other people are still here, stuck up on another board. When you are this side of the transplant fence you of course think of “your donor” but they are anonymous to you, and this made it all so much more real that someone was dead and that was why I was still alive.

I am not religious in any sense of the word, however the service was indescribably beautiful. The candle ceremony was particularly poignant; where from one large central candle six smaller ones were lit, symbolising the gift passed onto six others...then the large candle was taken away.

People were invited to get up and share stories. The chairman of BODY read out a poem he’d written his wife during an extremely difficult time (they lost their son and donated his organs) and spoke gently about how important it is to remember those still there, and not get lost in the grief of those who have gone. Moved to tears by his bravery, and following another recipient, I got up and said a few words. I would like to consider myself quite an expert speaker by now, but my voice was shaking and I wanted to sit down fairly swiftly. I just wanted the amazing families gathered to realise just a bit how important that decision which all unites them has been to me and my family.

Tears flowed throughout the service from all around, however there was somehow a very positive air as well. I think the strangest thing for me was being a minority – a recipient – surrounded by those responsible for people like me still being here. It was a truly humbling experience.

After the service we walked a short way through the park to see our Tree. The Charity owns an avenue of Trees and ours is number 43. The Trees in this avenue are dedicated to individuals or organisations that make a difference in the world of Transplantation and Organ Donation. To be recognised by this lovely, personal and humble charity made me very proud indeed.

This is an annual ceremony, and I will be back, as it made me reflect on my donor in a way I have never done before, and I intend to make an annual pilgrimage to support BODY and to think about my donor family as I took so so much away from that day. It is an open ceremony, so if you are interested in going at some point contact me for further details.

This is a ridiculously long blog already. I am going to have to write about the Hydro Active, sorry, the Adidas challenge another time (perhaps later). Suffice to say 53 MINUTES BABY!! Now surely that is worth some sponsorship...

Wednesday, September 03, 2008

I heard this story on a factual, newsworthy programme* and I wanted to put it up here. Time and time again there are posts on the message boards I belong to about people crumbling and struggling, who see it as a sign of weakness that they need to reach out (yes I am aware of the slight pot, kettle, black situation here) so here is the little story; as a reminder to me, as a reminder to anyone else who ever struggles as to what exactly strength is. I know it's a little cheesy, but I just like the sentiment.

A little boy and his mother are out walking. The little boy spots a rock, points at it and asks his mum if she thinks he can lift it. "If you use all your strength then yes you can" his mum replies, so the little boy runs straight to the rock and grasps it firmly. He strains and struggles, and tries several times to lift it, but to no avail. He tells his mum he cannot lift it, but she replies again that he can, and then walks over to him where she also grasps the rock and together they lift it up. The mother explains to her son that using all your strength means enlisting the help of other people, of those around you who want to be there for you and support you.

So next time you are struggling....use all your strength.

*or it was on a cheesy American soap but I don't think that detracts from the point of it being rather good.

Tuesday, September 02, 2008

As always, thank you so much for your lovely responses and emails. That’s one of the things I love about this blog, I can quietly be reassured that I’m not completely nuts and then carry on day to day stuff as normal. Anyway who needs a map when life’s an adventure? I’ll take the surprises thank you very much; it’s not done me any harm so far.

It’s been a very busy but lovely time since I last wrote; middling sister turned 21 and we had a fantastic weekend of family, friends and laughter. I absolutely love family time; I’m very lucky in the fact that quite a lot of my family live nearby, and it’s always so wonderful to spend happy time with them after all the ups and downs they’ve been through with me.

On Saturday we had a LLTGL meeting which was very exciting indeed. Being a real grown up charity and everything, we now need a formal business plan to demonstrate how we will be moving forward over the coming months and years. It reminded me how incredibly lucky I am to be involved in LLTGL, as I learn so much from it, get to exercise my passions, and it’s all for a good cause! Perfect! Following the meeting, I was kindly fed and watered by Oli and his lovely K. We killed some time on the Wii (I am rubbish) and as we howled with laughter at my darts “skill” I realised how incredibly lucky we both were to be standing there; if it wasn’t for organ donation, neither of us would be here anymore.

Tomorrow we are off to the Department of Health which is yet another incredibly exciting event for LLTGL. Incidentally, did any of you who entered the Great British Duck Race win? Numbers are up here duck was clearly too busy admiring its own reflection or something. Nevermind.

Oh and one last plug; on Sunday I am, er runwalking the Adidas 5k (formally and more favourably known as the Hydro Active). I have dug out my bright pink fairy dress and am dusting off my pink trainers. Even if it’s tipping it down (like it is today) I’m there with glitter on. So please please take a minute to sponsor us to help see off CF. Thank you muchly.