Saturday, May 30, 2009

It's been another very busy but very good week. I've been on half term so obviously in my brain that meant I could cram three times as much into the week as usual. There's logic in there somewhere.

Monday was the most exciting day; a visit to the gorgeous Manoir and lunch in its 2 Michelin starred restaurant. It was my birthday present from A and it was an absolutely stunnning meal. We wandered round the grounds which are beautiful, and the vegetable and herb gardens (I never knew there were so many different types of mint) and generally had a wonderful wonderful day. I felt like a real princess.

On Wednesday night, Oli and I headed oop North to film Bethany and Gabrysia. There's an update about this on the LLTGL blog as well. Both families were lovely and so welcoming. It was wonderful to see Bethany so full of energy, bounding around and playing with Eloise. Her glowing skin and bright eyes was a brilliant contrast to previous photos I'd seen of her. It was lovely to see the whole family looking so relaxed and happy.

I found Gabrysia's shoot sad; Gabrysia is the most urgently listed person in the UK for a heart. Every single minute is vitally precious, and that was clearly evident in the incredible bond her siblings and her mum demonstrated. Watching siblings go through the transplant journey always hits me really hard. When I was ill, talking or thinking about my sisters in relation to worst case scenarios would inevitably make me cry, even when I was able to talk about myself without doing so.

I always love meeting transplant families so the whole day was lovely. It also reminds me how incredible my family was during that time; I've said it before but things return to normal so fast. I'm off for a family BBQ today and thoroughly looking forward to it. Am off to slather self in suncream so I can enjoy the sunshine.

Friday, May 22, 2009

I know I know....

Completely lax blogging-ness yet again. Sorry. Life just never seems to stop at the moment. Well actually, I've paused today - first day off in weeks - and it's rather nice not to be traveling anywhere this weekend!

Last weekend I was up in Manchester to do some filming with Oli. We filmed the lovely Holly Shaw and also attended Team Ethan's fundraiser. It was a wonderful event; there was so much laughter and friendliness and warmth, but everything was tinged with sadness. The Collins family are just incredible; I don't really know how to sum up how much admiration I have for their strength and spirit. It was quite clear to see where Ethan got his ability to smile through everything came from. Oli has put together an awesome video of Team Ethan's weekend, which you can view here.

Whilst there, Oli and I had to stand up and speak. It was one of the hardest speeches I've ever done, as usually we go for the good old "look at this, this is what transplant can do, it's amazing" but of course that was not a possibility given the circumstances.

Jumping a bit (but it's related, honest)...there's some strange creature who calls herself "Kate" who has been raining down criticism on Holly, both about her Battlefront campaign and about her as a person (charming). "Kate" claims her biggest problem is that the whole story isn't being told, that transplants are not the miracle they are made out to be.

Firstly, whoever said they were a miracle? If transplantation was a perfect solution then anyone born with something like CF would be listed at birth. It's not perfect, it has risks, it has complications. But what aggrivates me about "Kate" and her opinions is that she is missing the whole damn point. Transplants are not offered to people who have other options; they are a last-ditch attempt at saving ones life. Not only that but my god is my quality of life 20 billion times better now than it was before. I didn't even realise how my illness affected everything I did until I was able to experience life this side of the looking glass.

For me though, transplantation holds as high a significance psychologically as it does physically. When I was waiting for transplant, I was able to keep going and to aim for things and to try and continue living my life (even by making tiny steps forwards). This was because I had hope. I had hope that this call would come, I had hope that I'd get a second chance at life, I had hope that someone out there would sign the organ donor register and in doing so save my life.

Hope is a huge thing and cannot be underestimated. Without that knowledge that I was aiming for something, I can guarantee I would not have lasted those 22 months. I was fighting for that chance, that hope and that's why (and how) I held on.

How anyone can suggest that because your hair can get thinner and you might get acne that having a transplant isn't worth it is completely beyond me. It just shows a complete lack of comprehension of the whole picture. Ethan's family are so movingly grateful to have been called, despite their sad ending, and their amazing graciousness makes me even more angry at people who make sweeping generalisations about how transplants aren't worth it.

A transplant offers hope. It offers the chance (sadly not the guarantee...not yet) of a new, better quality of life. It can save lives when nothing else can. And it is the most beautiful most precious gift anyone can give.

Tuesday, May 12, 2009


I would write a lengthy blog about it but have somehow thrown myself into a rediculously busy week this week.

So instead I shall cheat and link to Jac's blog.

I've only ever seen Jac face to face once before, and that was when she spoke at Scottish Parliament for us. She was extremely quiet, and sat very very still, two things which she is definitely not now ;) We talked and talked and talked and talked. And talked a bit more. And did a bit of walking as well.

I had a wonderful wonderful time and am so very very glad I completed the course. It was, most definitely, the hardest challenge event I've ever done (knees and ankle joints are still causing me grief), but I'm glad I did it. Massive thank you to Jac and her wonderful friends and family who made the whole event so enjoyable. And to the gorgeous Seb for following me around constantly to check I was ok!

Thursday, May 07, 2009

ohmygod ohmygod ohmygod.

This weekend I will be in Scotland walking along the coast. I am terrified. Not on my own though....with 170 others, all of whom are walking as part of Team Jac to raise money for LLTGL.

I'm looking forward to it hugely but that is nothing to do with the walking part, that's because I will get to see Jac and chat to her properly for the first time ever. WOOHOO! Last time I saw her was when she spoke at Scottish Parliament for LLTGL; she was looking pretty frail and her voice was very quiet due to lack of breath I'd imagine...I can't wait to see the difference.

Jac has worked incredibly hard to put all this together, if you take a look at her fundraising page you will see just how much organisation has had to go into all this! I am going to try and do some filming and take piccies so we can capture what looks to be a fantastic event. Please sunny thoughts for us all on Saturday!

This week has been very very sad as gorgeous little Ethan lost his fight. There are two beautiful articles here and here about him. All of us at LLTGL are totally gutted for him and his family; a truly inspiring and lovely little boy who, during his short life, inspired thousands to register as organ donors. His family are very much in my thoughts right now.

Ethan and his Robyn's Rainbow.

Friday, May 01, 2009

Swine Flu.

It's everywhere. And I mean everyyyyyywhere. No not the infectious sort silly, the hype and the Media "round the clock, this may or may not happen" reporting.

I'm very torn on the subject. I actually think the UK is being very responsible taking it so seriously (better safe than sorry) but the media is annoying me somewhat. There is a lot of scare-mongering going on for something that has resulted in 13 deaths worldwide so far. Yes 13.

But it is natural that people are getting a bit concerned; news of a new flu virus is never really going to be good news is it?

For any transplant patients who are concerned, this discussion thread offers some useful advice.

I've come down with a beautifully well-timed cold, complete with swollen throat, aching limbs and everything. Tad worrying when on every single website you read there is advice about contacting a doctor with any flu-like symptoms, but seeing as I haven't been to Mexico in the recent...ever, I'll take my chances*.

Stay well and non-panicky folks!

*obviously contacting Harefield should there be a change in Lung func, as is the normal advice. I'm not that daft. Honest.