Saturday, September 19, 2009

Stolen idea from fellow blogger Becky (who keeps a blog about her life as a mum to 2 children with CF)...

Q & A.

Ask me a question. Ask me more than one if you like. Anonymous questions are fine (as can be posted on my blog, for those of you who are reading this in note form on FB it's ) and do ask me anything (although I don't guarantee I'll answer anything, even a pinkandsmiley loud mouth has some privacy, honest!)

You have 1 week to question me about life, CF, transplant, LLTGL, me myself and I, all of the above....or anything else for that matter.


Thursday, September 17, 2009

Feeling a bit helpless tonight.

Jess has had a rotten day, which resulted in her being rushed to A&E and from there being transferred to ICU. She is now on the main ward and doing a bit better.

I remember this bit so much. Well actually I can't, I was never as ill as Jess I don't think....well my lung function never went as low as hers if that's any judge. But I remember my last few months of waiting. The effort it was just to keep on breathing. It felt like I'd been walking for months and months with no rest and that one more step felt like such an impossible task...only I wasn't walking, I was breathing. And you can't take a break from breathing.

I know what's keeping Jess going. It's hope; the hope of a transplant, of a new life, of being able to breathe. And people - people kept me going so much. Oh and stubbornness (a fab trait to have when all the docs shake their heads at you).

I don't know what to do. The reality is, there is nothing I can do. I can wish as hard as I can, try and be there for Jess, I can shout about organ donation, I can push myself even harder to try and spread the word. But all that can save Jess is that call. She needs it now. To be honest she needed it yesterday, but now will do. Please.

Who am I talking to? I don't know. Want to do something? Repost this. Or post something, anything, about organ donation and how to sign up (and why) anywhere you can.

Thank you.

Monday, September 07, 2009

This is going to be a long blog, as Sunday 6th of September was a long (but very wonderful) day.



The lady in the blue hoodie in the first shot and hugging me in the second is Hannah. Hannah was my physio when I was in hospital training for the 5k back in 2006. Hannah was the one who would come and see me several times a day, would help me mobilise and build up my distance, and who walked with me and another wonderful physio called Vicky, to the finishing line.

So why when Jess announced she was doing the 5k I didn't realise Hannah would have something to do with it, I don't know! Seeing Hannah there was hugely emotional, the last time I was in that park with her I was in Jess' position. It really brought it all flooding back to me, especially when she said "I never thought I'd be walking alongside you like this" whilst hugging me.

From the moment I walked onto the field I got very emotional. I always do; the Hydro (as it will always be to me) holds so much significance, and everyone there is full of spirit and determination, doing it for a good cause, doing it for someone they love, doing it for someone they've lost.

Anyway enough about me - I know this is my blog but I'm writing today about Jess' achievement. She did amazingly. She was all clad in neon and smiling constantly.

She looked somewhat nervous and was quite quiet (doing a much better job of not using up all her puff than I did) but extremely determined. Several members of Jess' medical team from Kings were there walking with her, some running ahead to complete their own personal challenges.

Jess was aiming to walk 200m out of every kilometre. She did it (I don't know how) and did it with great style, and in fantastic sunglasses. I've made a video here from footage I took yesterday. I don't mind admitting I cried whilst making it and cry when I watch it back. I so want Hannah's words to be true. They have to be true.

I also got to meet Liz and Jan, a wonderful pair of friends who you can read more about on Holly's blog. Walking 10 weeks after their ops? Pretty damn inspirational. Speaking of Holly, massive thanks go out to her for taking these amazing pictures.

I struggled slightly during the race - partly due to falling down the stairs in the week and bruising various parts of my anatomy quite spectacularly, but to be honest was pretty focused on watching Jess and willing her on. Crossing the finishing line was extremely emotional, and I brushed away the tears whilst whooping with joy and jumping up and down (which is why it appears as if the cameraman has fallen over on the video at this point).

After congratulating everyone and telling Jess to go home and get some rest, I set off for Croydon to support the wonderful Lou. Lou was doing her sponsored tree hug that afternoon and I was determined to get down there and be there for her. A 2 hour tree hug might not sound like much, but when talking makes you breathless and your arms and legs have virtually no muscle mass, it's a huge challenge.

Lou did fantastically well; it was hard work, and she was in quite a bit of pain by the end, but she clung on for dear life. I have some footage of her too and will be editing it and putting it up soon. I am just glad I was able to be there with her, cheering her on.

I am not feeling great today as a result of lots of rushing around, but I am pretty sure that's nothing compared to how Jess and Lou are probably feeling. They did so incredibly well, it's spirit and determination like that which is why both ladies are still here, after all they have been (and are still going) through.

Told you it was a long blog. But a good one I think. Hurrah for fabulous girls achieving huge amounts and rocking muchly.

Friday, September 04, 2009

There haven't been many blogs about me recently. Mostly about what else is going on. This is for a number of reasons, but the two primary ones are that I do rushed blogs now and also that nothing that interesting is happening with me!

Health is good. Really good. To the extent that my last visit to Harefield was back in March. I am going up there at the end of the month for a checkup; I just phoned and begged to change the appointment as I have been booked for a talk up in London to quite a powerful audience on the original clinic date, so I don't want to change that if I can help it!

The thing is with feeling so well and "normal" is that I get used to only having to do normal things. The phone call just now brought with it quite an uncomfortable realisation that I haven't been to my GPs to have my bloods checked recently (oh dear, will be in hugefat trouble and deservedly so). When real life is all that takes up your day to day, it becomes harder to remember (or accept) when you have to step out of it. This is all hugely positive, incidentally.

I have been asked to attend an occupational health appointment in relation to some work I'm doing, which, in a calm and reasonable manner, I was instantly infuriated by. But why on earth should I be?! It's for my own protection as well as the employers, and one would imagine that with my, somewhat extensive medical history, they'd err on the cautious and request one. But my instant reaction was one of "there's nothing wrong with me!" which is interesting, and also rather nice.

A and I have been in our gorgeous little house for a month now. I love it. Very much. People used to say to me "being normal isn't all that you know, what with bills and work and responsibilities..." I think it's awesome. Honestly. Maybe that's just because I am constantly aware of how lucky I am to even be experiencing it.

Tuesday, September 01, 2009

Shortest of shortyshortshort blogs:

The Advocate weekend was awesome, predominantly because the Advocates themselves are awesome. You can read about it all on the LLTGL blog, on Lou's blog and on Holly's blog.

This Sunday I am heading up to London for the day. I'll be spending the morning walking alongside Jess, and the afternoon cheering on Lou.

Please take a look at their pages and consider sponsoring them, they're putting their bodies under a lot of pressure in order to raise money for LLTGL; I'm really very humbled by them both.