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 www.pinkandsmiley.blogspot.com ) 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.

go!

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.

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


2006


2009


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.

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.

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.

ohhhh lordy.

Time has gone rather fast. How is it that during the school holidays I'm even less capable of keeping my blog up to date?!

This will be a brief one as I am madly preparing for the LLTGL Advocate weekend. I am hugely excited but a little nervous, as I've organised it so I really hope it goes ok and they get lots out of it. Some of you I know have read the other recent LLTGL news and I just wanted to say thank you for your lovely messages of support.

This week my lovely friend Mrs W and I disappeared off for a bit of pampering at a Spa. We were lucky with the weather (as demonstrated by the pics) and had a wonderful and very relaxing time.

Our little house is feeling well and truly like home. I adore it here and am so happy. I feel very much like we belong here.

Told you it was only a short one! Stay smiley all.

I have had a rather busy and exciting week.

For the last few months, A and I have been working on getting our very own little home. I have, over this time, learnt that I do not like banks but that I am not quite as inept as I thought I was at all things money related.

A little while ago we found one. A little while later we made an offer. And on Friday, we got the keys.

It's been a truly wonderful experience. When we first moved in to our house with rosesinthefrontgardenandeverything, I wasn't really able to be a part of it, as we'd literally just signed the rental agreement when my lung decided I needed a 3 month vacation chez Brompton. By the time I came out (chest drain still in) I was in a pretty weak state and most of our stuff had been moved in anyway, and it was a bizarre and disjointed entrance.

This time I have been involved in everything. Everything from going in and sweeping and hoovering and polishing to helping move furniture. Well, actually it was predominantly standing watching the guys heave the sofa up the stairs trying to say helpful things and stay quite far out of the way.

When we gave the keys of our house with rosesandeverything back to the landlord I could feel the tears coming, but I managed to hold off till we were safely back in the car and out of view. I cried a lot. I do feel like I have left a lot behind in that house. So much happened there; various events and memories that one will associate with a home as well as some pretty key moments: my almost fatal lung collapse, LLTGL was first dreamt up in that lounge, Emmie and I sat on the floor sorting Tshirts and discussing plans, my call for transplant...then after transplant, A and mine engagement and then marriage....it's seen a lot that little house.

As I say I do feel like I have left a lot behind. Neither in a good nor a bad way. It's just a big change, another big step forwards, and some things now seem further in the past.

A and I are very cosy in our new place. It's still hugely exciting that we're in our very own little house, I don't think I can quite believe it, even though it already feels like home. What a lucky girl eh?

I haven't even felt the need to decorate everything pink. In fact I distinctly heard myself say to A "I'll have to get new towels, pink ones just don't go..."

I must be growing up.

Is this the reason that Scotland has gone from having poor organ donation rates to being one of the leading regions in the UK?

London is one of the worst. That makes me sad and rather ashamed of the area I live in.

There was a lot of outcry when the Scottish Kill Jill advert came out. I happen to think that controversial/hard hitting might be where we need to head. What do you think?

Comments please...

I've been a bit quiet recently.

(she says stating the obvious).

This was mostly to do with work being so busy. Which I did pre-warn about. I've also had a bit of a confuddled head. Heading out of the mist now.

I was sorting through some old boxes (for reasons that will become apparent soon!) and came across a batch of cards and letters. They were from when I had my rather hefty pneumo which made a good attempt on my life (but failed - ha). I was lost in memories for the next half an hour as I ploughed my way through every single one. It only took a few to have me in tears. People can be so giving, so generous, simply by taking the time to reach out and let someone know that they are in their thoughts.

The support and friendship I was shown at that hugely vulnerable time was incredible and I am still overwhelmed by it when reading them all again now. I think it was a very important time for me to rediscover them as I have been feeling uber-sorry for myself this last week, and revisiting the past was a hugely positive thing as it essentially showed me that I need to get the hell up and slap myself about a bit.

On this note of supporting those in need, I would like to give a little mention to Postpals. These guys are fantastic and I think it's well worth popping over to their website to see what they do.

I am now on Summer holidays (YAY!) so be prepared for slightly more frequent posting! Hurrah!

This week is National Transplant Week.

Please do something. Do anything that might raise further awareness. Talk about it, get some stickers, get some leaflets, send an email, change your facebook status, tweet about it...Anything.

People like Jess, like Tor, like Gabriela, are relying on us. They need us to do it now, not to put it off till tomorrow, because their tomorrows are looking very uncertain indeed.

Let's give them a tomorrow. Think about it, talk about it, do something about it.

www.lltgl.org.uk

I have a sneaking suspicion that whatever my apologies and promises, this blog may well remain fairly rushed and infrequently updated until the end of term. Luckily (for me) the end of term is now less than a month away - woohoo!

Am v much looking forward to pausing for breath, although the reason it's been so hectic is only due to success so can only be a good thing!

There has also been another somewhat stressful (but exciting) thing going on however I don't want to blog about that just yet...

Oh and the big kids have not eaten me for breakfast (although one class has certainly tried to) and I'm mostly enjoying the challenge and learning a hell of a lot as I go.

One last thing (continuing in this crazy disjointed manner with far too many brackets) - Please please please could you check out www.lltgl.org.uk/mysisterskeeper and write to your local cinema. It would be fantastic if we could get loads of cinemas around the UK displaying Organ Donor awareness materials and you can help!

Stay smiley all!

Gah.

Where did the time go!?

OK I am going to consolidate the past 2 weeks into a pacey and consise blog (ha).

• Oli and I did some more filming with William's family. Sarah and his big sisters Hope and Ellie spoke really well about life with William before transplant, and about living in hospital and every day being so fragile. Wills ran about bursting in every now and then whilst we were filming, which was just a joy. We also discussed the Gifts of Life project which is going fantastically, so if you haven't done already, do go and have a look.
• My youngest sister had a birthday which resulted in us three girls heading up to London to watch Sister Act at the Palladium (well done Abs for being born as we had a fantabulous evening).
• LLTGL had a fascinating weekend which involved some amazing guys who had come over from the US to do some training with us. It's all part of our exciting new project which is currently being developed....more info to come on the LLTGL blog soon.
• I nearly missed the above due to a chicken pox scare which resulted in various blood tests whilst they ummed and ahhed about my immunity; first result suggested I wasn't immune, lots of initials (IGG, IGM) were banded around and then a follow-up bloodtest at Harefield revealed that actually I am immune and it was a bit of a panic over nothing.
• Work has been stupendously busy and will be even more so until the summer holidays as I have taken on some extra cover work (so if this blog suddenly halts it's because some pupils who are taller than me have eaten me for breakfast).

So life continues on in its bewilderingly rapid and schitzophrenic way....but all is good. I shall, at some point, sit down and write a proper blog that does not consist of bullet points. Honest. But just wanted to reassure one and all that I am safe and well. Life just gets in the way sometimes. How fantastic is that :)

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.

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.

WE DID IT!!

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!

www.justgiving.com/teamjac

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.

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.

Oops.

Well technically this is "after the weekend" - just quite some time after.

The Ball was fantastic. It was organised by Lorraine, mother of 2 boys with CF, and publicised quite widely within the CF community. Because of this, I was aware there would be quite a high percentage of parents of children with CF and other relatives of CFers, so I was more nervous than usual as I needed my speech to be hard-hitting yet positive. Erk.

A and I drove up on Saturday afternoon and arrived in good time for A to make use of the lovely Spa facilities. On his return to the room he informed me that everyone knew me (or new about me) including (by sheer coincidence) a lady who was not attending the ball but who was a journalist who I'd spoken to on several occasions.

We got ready (I may or may not have had a strop about my hair before deciding it was probably ok and I wouldn't shave it all off) and headed down to the drinks reception. I was overjoyed to see Suzie looking radiant and sat chatting to her and her friend. I sought out Lorraine who was in a gorgeous read dress and doing a very good job of not looking harrassed! We moved into the main room for the meal which was beautifully decorated and had a stage all set up ready for the live band which would feature later in the evening.

After the rather yummy dinnner, Lorraine and her husband spoke briefly to thank everyone and to explain how CF affects their family, and then it was my turn. As always with these things, what I actually said turns into a bit of a blur afterwards, but I got a few laughs (intentional - not due to failure to speak English I hasten to add) and quite a few tears, so hopefully it did the trick.

I then donned a sash to help with the auction, and went round shaking a bucket asking for people to empty their pockets and wallets of any loose change in a (hopefully) sweet and non-menacing way.

Money-relieving duties over, it was time to start dancing, and the fantastic Amy and the Aviators (who I'd thoroughly recommend) got everyone up from the first song and most of us stayed on the dancefloor till the very end.

All in all it was a fantastic night; I had great fun and it was lovely to meet some of the parents from the boards, and to chat to Suzie and Lorraine not in a muddy field for once! Bring on the next one...

I'm off to Nottingham tomorrow.

I'm heading up there to attend a CF Ball, organised by a mother of two boys with CF. I'm doing a speech, and weirdly, I'm quite nervous.

I'm not exactly sure why; I think it's because I'm very aware that a lot of the people in the audience are parents of CFers. Therefore I want to balance it right and not give anyone sleepless nights! But at the same time the hard side of CF needs to be told to ensure that people understand why the money needs to be raised.

Don't get me wrong, I am also very much looking forward to it, especially seeing some familiar faces. And wearing my lovely green dress (woo)

I just hope I have aimed my speech at the right level and that the ball is the success it deserves to be. Will blog about it after the weekend, have a good one all.

Jess is someone I've mentioned many times over the years. She is the feisty small blonde person with the infectious giggle and a survival ability which surpasses anything I've ever seen.

Jess was only 15 when she was told she needed a double lung transplant. Almost 4 years later, Jessica is still waiting.

She has managed to survive beyond all expectation and has doubled what doctors predicted when listing her. But not even Jess is superhuman, and I am getting very worried now.

Jess has had a lot of false alarms, where the transplant could not go ahead due to a problem with the organs. Very recently, she got called again....and was too unwell to undergo the operation.

Jess is now back in hospital, and the team are fighting hard to get her well enough to undergo the operation hopefully in time for another call. Jess' time is running out.

As she was in hospital and far too ill to come and support Holly's Donor Day in person, Jess was determined to support her in any other way she could.

Please pass the link on to the below because if this doesn't kick people into action....I don't know what will.


Why support Donor Day?