The A - Z of me.


Has it been done before or have I dreamt it up? Suspect I've read it on another blog but cannot find where....anyway, here's my very own personal A - Z.

A is for... well, quite clearly A is for A. My A. That's all that needs to be said on the matter.
B is for... Blonde - both in hair colour and in the brain.
C is for... Choirs. I love them. I run one, sing in one, and help coach in others (mostly for children). The feeling you get from singing together in harmony is awesome.
D is for... Determinism. I'd like to think I have a fair amount of this. It could also be called stubbornness.
E is for...Excitable; I have a tendancy to become far too over excited and need to go for a lie down (sad but true).
F is for... Friends. I have some that are absolutely invaluable; I don't know where I'd be without them.
G is for... Glee. I wish people in my life would burst into song or know the harmonies automatically when I do.
H is for... Hope. I think it's pretty damn important to have hope in your life; when in a difficult situation I'm always craning my neck looking for the rainbow.
I is for... Imagination. I have a vivid one, which is not always a good thing.
J is for... Jewellery. I am a bit of a magpie and have a huge assortment of big sparkly necklaces, bracelets and earrings. I like sparkly stuff.
K is for... Kettle. OK cheating here as I'm trying to get to Tea. A strong hot cup of tea can work wonders in most situations. I probably drink too much of it but it's my only real caffine fix (not a big coke or coffee drinker)
L is for... Life. It's a wonderful wonderful thing.
M is for...Music. I come from a musical family and can't imagine a day without it. Music is food for the soul.
N is for... Nurture. My family are a big part of my life, always have been, always will be.
O is for... Optimism. I am an optimist, however with a good healthy dose of realism. I rather like Peter Ustinov's quote on it: "I am an optimist, unrepentant and militant. After all, in order not to be a fool an optimist must know how sad a place the world can be. It is only the pessimist who finds this out anew every day."
P is for... Pink. Because I love it.
Q is for... Quotes. Quotes about life, about love, about hope or motivation. I collect them for rainy days, as exemplified above.
R is for... Reading. I was brought up in a house piled high with books, with parents who would read us a variety of stories (with all the voices) from a very early age. I love getting lost in a good book, but am notorious for returning to my beloved old favourites.
S is for... Shoes. I love them, but am completely incapable of walking in heels in an attractive womanly way.
T is for...Teaching. I teach a variety of ages, and I absolutely love it. I find it extremely rewarding and each day is refreshingly different from the last.
U is for... University. My years at Bristol University were some of the most exciting and happiest in my life so far. That is despite my, by then, extremely poor health. University taught me a lot (mostly in the school of life), and gave me some wonderful friends.
V is for... Vitamins. CFers have to take vitamin supplements due to absorbtion problems, and along with my enzymes, I've been on these since I was born and always will be.
W is for... Waterworks (of the teary nature). I am not an attractive crier and unfortunately cry at the drop of a hat.
X is for...X-rays. On guestimation I've had around 200 X-rays in my lifetime so far. Probably more in fact.
Y is for... Youth. I still feel like I am in my teens, and that I could wander into a high school classroom, sit down in a lesson, and feel perfectly at home. This is despite the fact I teach this age-group...
Z is for... Zzz - I love my bed. I love curling up on it just to lie and read.

"Rich is excited about what the future might hold"

That's my mate Rich's facebook status at the moment.

A couple of weeks ago, Rich was in the Brompton hospital where he had been living for the past two months. He was unable to do....well, anything really. He was using a bi-pap (non-invasive ventilator) pretty much all the time just to keep breathing, he was extremely ill, and his quality of life was poor to say the least.

Rich got his call for his new lungs and new life in mid-june and so far, is recovering extremely well. His facebook status brought tears to my eyes as that's exactly the point; Rich is now able to contemplate the idea of a future. Of new and exciting possibilities. Of persuing dreams and ambitions. Of simply being around for family and friends. There's a chance, there's hope, there's more to come.

Yesterday I logged onto facebook to read that Donna Mansell - an avid campaigner who was waiting for a new heart - had died. Donna leaves behind a grieving husband, and a seven year old daughter.

This is the very real reason that we need to keep campaigning for more donors and for improvements to the transplant system in the UK. If it wasn't for my donor, the top of this blog would now read "1984 - 2007".

National Transplant Week starts this Sunday and runs all week. Please take the opportunity to raise Organ Donation with someone who might have never even thought about it before. There are events happening across the country; you can join in in a thousand different ways, and make a difference.

Let's give more people the chance to think about what the future might hold. The chance to contemplate careers, families, mortgages...all those things that most of us take for granted.

Organ Donation saves lives; the lack of registered donors kills. Please, think about it, talk about it, do something about it.

Thank you.

I am feeling increasingly frustrated following comments and remarks surrounding this story here so I had to blog about it.

The story is essentially an incredibly sad one; a young woman with end-stage CF got a double lung transplant, only sadly to pass away from pneumonia several months later. The thing that has wound me up is that everyone has hooked onto one thing; the lungs came from a smoker.

The use of a smokers lungs is an entirely seperate story, and granted, still one up for discussion. But the fact that these lungs previously belonged to a smoker is not what caused her to die. Pneumonia is what caused her death; sadly a complication that anyone undergoing a transplant can suffer. I myself had pneumonia in the month after my transplant which is what caused me to plummet to such dangerously ill levels that the team thought I would not last the night. My lungs did not come from a smoker.

According to her relatives, this lady would have refused lungs had she known that they came from a smoker. This is a completely personal preference. I personally would have accepted any lungs that the team declared good enough as I knew that it was my last shot and that people wait years and years without a single call. I trusted my team implicitly; surely have to when you get to this stage?

Don't get me wrong, I have nothing against her family; I cannot even imagine the turmoil and grief they are going through having fought so hard and come so far, only for the transplant not to work. But I am frustrated by the Media, who have taken two issues and looped them together, to create a cause and affect when that is simply not the case.

There are dozens of comments all over the internet along the lines of "how dare they [the hospital]" and "disgraceful! what poor care" (again the hospital) as well as "how disgusting, to be given a smokers lungs!" and these are really beginning to frustrate me.

Firstly, and most obviously to me, the person who donated those lungs was, in fact, a person. They have loved ones, they have a family who is still grieving for them and who in a moment of generosity agreed that their organs could be used to try to help others. This person gave the gift of life; I don't think "how disgusting" is really a very tasteful response.

All organs undergo extremely rigorous testing. The lungs would not have got through these tests if there was anything wrong with them which caused the team to doubt that they'd give the recipient an extremely good chance of survival. These criteria are so strict that many organs are deemed "non-viable" which is what results in a lot of the false alarms that people undergo. The medical team will have looked at the lungs on an independent basis; obviously the fact that the person was a smoker will have been taken into consideration but when you consider that 50% people waiting for lungs die before some come through, and that any potential donor having something like a chest infection could render the lungs non-viable, then what choice do medical teams have but to open all options and look at each set of lungs on a case by case basis?

The very sad fact is that there are not enough donors. People waiting for lungs cannot wait indefinitely; there are no machines to prolong life whilst the perfect pair of lungs are found. Medical teams do now have to use organs which are described as "sub-optimal" - that is because there is such a dire shortage that at least this offers a chance of survival.

The story is a tragically sad one, and my thoughts are with her family. They are also with the donors family, and with the teams around the country that every day have to make difficult decisions without a crystal ball to see how things will turn out. Transplants are not failproof, but they offer hope, and each and every one of us can raise awareness about them to increase the number of donors and therefore save more lives. Let's use this to do something positive; there are 10,000 people out there who desperately need us to.

PS- LLTGL Ambassador Victoria Tremlett has done a fabulous radio interview about this, which you can hear by clicking here and forwarding to 1hr 13 mins in. Just listen to the desperation in her voice; we need more organ donors. Please keep spreading the word. Thank you x

“A man's worth is no greater than the worth of his ambitions” - Marcus Aurelius

“When ambition ends, happiness begins.” - Thomas Merton




I'd start with my usual apology about the lack of blogs recently, but I think everyone's sick and tired of that. Let's face it, life is busy, very busy, and my blogs are less frequent.

So skipping that (sort of), onto my main reason for actually sitting down to write a blog. I've been thinking a lot about ambition recently. A rambly waffly blog about to follow.

Ambition is a good thing. It drives people, it prevents people from becoming apathetic an pushes people through harder times and over obstacles. However I'm not always sure ambition is a good thing. Maybe it's possible to have too much ambition?

I actually wouldn't label myself as ambitious; I'm very easily content and don't feel the need to constantly better myself. Maybe I'm not particularly driven or maybe this stems from years of having to re-adjust my goalposts as my health declined - I'm not sure - but I get quite comfortable and don't often strive for change in my own life (although in external issues I am passionate about it's an entirely different story but that's another blog...)

Mind you, if I had no ambition at all, I wouldn't be where I am today; a graduate with a multi-faceted job and chairman of a charity, so maybe I am quite driven but only to a certain extent?

There are two very oposing quotes at the beginning of this blog, both of which I find extremely interesting. The first suggests that only those who reach for the stars really sparkle, the second suggests that whilst you are constantly striving for more you will never be happy with what you have.

Can both be true? Is there a middle ground?

I do see a lot of truth in the latter, but I believe there can be a balance. I dp think ambition is a good thing, but measured and with a solid ability to enjoy what you have here and now. If we didn't aim for more, we'd never move forwards, but if you're constantly pushing to progress today will pass you by before you've even had time to appreciate it.

I am very lucky in that I find it quite easy to adapt my goals and ambitions. This means I am quite easily pleased (anyone who knows me will know that this extends to things like a pink birthday card with googley eyes on it giving me joy for absolutely ages...) and also means that I can usually put something to the side when it is just too much of a struggle. I'm not saying this is a good or bad thing, but I know it's made my life easier over the years.

As well as aiming high and striving to better ourselves, I think we should be able to look at how far we've come, what we can do right here, right now, and be able to enjoy that. There are so many things I don't make the most of right now because I'm thinking too much about next week, I'd like to pull a bit of that balance back I think. After all today is here now, and tomorrow is only a possibility. Make the most of both.

Apologies for being profoundly rubbish on the blogging front.

As per usual, whenever I go silent, it's a good sign; it means life is so busy that I've inevitably triple booked myself and don't have time to update my blog. So yes, all is fine; I am well, I am very happy and I am extremely busy.

March is always a busy month and my favourite month of the year; the weather is warming up, we're heading towards the end of the spring term, but predominantly because it's my birthday. I had a fantastic day and a wonderful celebration, dancing the night away with fabulous family and friends. Below is a picture to demonstrate the classy and stylish celebrations that were held (it was a 90s themed do, we didn't just inadvertently all decide to dress up as Spice Girls).



That's all of an update you're getting today I'm afraid, instead I'm going to list some blogs that I think you should check out when I'm being naughty and lax at writing:

Lucy's Blog.
Yes I'm a tad biased as Lucy is my sister, but she's a bloody amazing writer. Just take a look, particularly at this recent post which I thought was particularly fab due to it's frankness and honesty.

Nick's blog.
Nick's son Adam has neuroblastoma. I have a connection with this family in the fact that I am Adam's music teacher, or was when he was well enough to be in school. The family are desperately trying to raise the money to get Adam to the US for life-saving treatment so please do pop over to his appeal website and read a bit about the family and the campaign as well.

Jac's blog.
I just love her style of writing, and also the stories of Seb, her rather cute dog. Jac is a double lung transplant recipient like myself.

LLTGL Ambassador blog
Written by Tor and Rachy (both waiting for lungs), but earlier this month Rachy received her call and is so far doing very well. If you want to learn more about the wait for transplant, this blog is one for you.

Tori's blog
Another lovely lady waiting for lungs; I love her honesty, her style (both in writing and in her fab clothes) and her ability to pull off bright red lipstick!

The end of term is looming (and with it plenty of concerts) but then for the Easter Holidays, which I am extremely excited about as it will hopefully provide me with an opportunity to catch up with myself. Watch this space.

Just to reassure you, I haven't done any of the following:

a) died
b) hit my head and suffered from amnesia
c) given up blogging
d) fallen down a hole somewhere (likely, but luckily untrue this time)
e) become a monk
f) run away to mexico to start a new life

I have merely been busy. But found time to disappear off to a little piece of paradise for a week...


Me swimming in paradise, aka Mauritius.

It was beautiful, hot, relaxing and very much needed. And I feel very lucky and refreshed.

Bit of musing because I need to really; apologies for this being a bit deep on a Monday morning but it's been stuck in my head and I really need to get over it, and, well, my blog is my therapist so hear goes.

I've been thinking a lot about this dream coming to an end recently. Just to reassure, there is absolutely no reason for me to be contemplating this - my lungs are behaving exceptionally well - *touches wood half a dozen times* - and I am happy and healthy and very lucky.

I think it's more that it has been triggered by several other things, one of which is reading the blog of this incredible young woman here. Eva is in the end stages of chronic rejection and desperately needs a re-transplant, fast. Please do pop over to her blog and leave her a message as she loves reading them. Advanced warning, she is very poorly and brutally honest. Every time I log onto it I hope hard that I read the message saying she's got her call.

As well as this, my life seems to have structure and a future right now, and perhaps I am scared of following this path which has implications for not this year and possibly not next year but for some time after that. Maybe even after all this time, planning ahead is frightening as it feels almost like I am tempting fate.

Maybe I just feel too lucky. I have been given so much, do I feel spoilt and demanding in wanting more? Am I afraid that my luck will run out? I don't think afraid is the right word actually, rather that the idea of it running out has been something I've been contemplating a lot more recently.

No one is immortal. I guess the threat of rejection is something every transplant patient considers at some time. For some reason, I've got it into my head that because I've not had any so far *touches wood lots of times again* if/when I do, it'll be a biggie. Any logic to that at all? Nope, none whatsoever. I get cross at myself for thinking about it when a) I'm fine and b) it's all a bit self-indulgent. I think by blogging maybe this little black hole of musing might close up.

Those of you who see me on a day-to-day basis know that there's nothing wrong and I'm not down or depressed. Merely a little thoughtful at present. And it's not really the kind of conversation you strike up with someone: "you know this whole transplant thing? Well I've been thinking about when it all comes to an end..." - way to ruin someone's day! But it is something I think about. Now and then. Don't dwell, but think.

What's the answer? There isn't one. No-one knows when their dream will come to an end, it's not something that is only relevant to me, so the only answer is to keep on loving it and making the most of it whilst it shimmmers.

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”
- Thich Nhat Hanh, Vietnamese Monk.

It's been a while.

Sorry for the delay, for the break. January was a crappy month for the CF and Transplant community and it really has shaken me a bit.

Jess' funeral was beautiful. Desperately sad but beautiful. I cannot write about it however both Sarah and Holly wrote lovely accounts. Jess' family were incredible; the strength of the human spirit will never cease to amaze me.

A friend emailed me today about something related to organ donation and mentioned that her thoughts and feelings about organ donation had also been deeply shaken. I emailed back with what was essentially a discussion in my own head and in doing so realised I was talking to myself more than anyone. So I thought I'd write it on here. The road to transplant is such a long and difficult journey, why do I still believe that fighting for it is what I should dedicate my efforts to? Because I do, I have to do it, I need to do it...I want to do it.

When you are listed for a transplant, a million and one emotions fly through your head. There is a sense of fear, of apprehension, of acceptance of where your health now is, and of relief. Relief because you already knew by this point that you were extremely ill, and now someone is saying that there might be a way out...that there might be an answer.

The offer of a transplant for many changes their status back from what is essentially terminal to "extremely ill but with a light at the end of the tunnel".

When looking at a typical transplant patient (am thinking cardio-thoracic mainly here) they are hardly the ideal candidate for surgery. In fact, if it was any other kind of surgery being suggested I suspect they'd be laughed out of the hospital. At the end of 2006, I don't think my body could have been much further away from "optimum condition" to tolerate such a major operation.

When I was taken down to theatre, my last words were "I'm so lucky". This wasn't because I was convinced that that was it, I was mended, but because I knew that either way, that part of my journey was over. Someone had tried to save me and hopefully it would work...and I had a chance. A door was opening. I felt relief; the fighting, the hanging on, all of that was for a reason, and now what would be would be.

Tranplantation is not foolproof. It does not always work. We know that, as we sign up to go on the active list, we know that. But I remember thinking "at least there's now a chance". That's what I desperately needed, and that's what I was fighting for.

When it does work...well, all you have to do is read my blog over the last three years to see what happens when it does. I still love watching people's faces when I tell them that I'm a double lung recipient. The shock says it all; how well I look, and how my CF past is a now just a shadow in the background.

Transplants don't last forever. Sad but true. But do you know what? If it all ended tomorrow, I've already done a billion and one things I never thought I'd do, seen a billion and one things I never thought I'd see. I've experienced "normal" life...all thanks to one person, one decision...one family.

For me, transplantation equals hope, a chance, a rainbow. It offers a hope that there are better things to come. Hope that you might step through the looking glass and experience a life you've not dared to dream about in case it should not materialise. And that dream alone is worth fighting for, especially as when it comes true, it's bigger, better and more colourful than you ever could have imagined.



www.lltgl.org.uk

Jess.


I've started rewording this blog now for the umpteenth time so I'm just going to write; I keep worrying as to whether I am saying the right thing or not. I need to just write.

I am missing Jess very very badly at the moment. We texted back and forth most days and it hurts knowing she hasn't made it, that her glimmer of hope came too late. She should have made it, I think I am angry as well as sad, she should have had her call earlier. Four and a half years of clinging on is just not fair, and consequently, her body was just not strong enough.

Instead of going on and on about the sadness and the ache which is currently making me feel quite blank and flat (this is my blog, I'm allowed to be selfish) I'm going to talk a bit about what I loved about Jess and more importantly, what she taught me.

Jess was the strongest person I have ever met. Literally. When we went up to decorate her hospital room at Christmas, she was fighting so hard I have no idea how her body was doing it. Mentally, she never ever gave up either. She had a determination in her, a fire that made her so sure of her path and gave her such a focus. It inspired and motivated me to do more.

Jess had a huge heart. She was in hospital having a rotten time when I put up some sort of sulky status about something completely mundane I was annoyed with and the text came through almost instantly "Are you ok? Thinking of you x" Typical Jess always thinking of others; a memory that several other people have conveyed to me in their messages for her condolence book (which, incidentally, if you'd like to contribute to is open to anyone - no matter whether you knew her or merely knew of her and were touched by her - email me for more info). When I was in hospital for IVs this November, I texted her one day saying I was sending her all my mendy vibes and she texted back saying "no please save some for you."

She had a fantastic sense of humour. When Holly and I went to film with her for Battlefront, we spent most of the time being gently reminded by the crew that this was supposed to portray the severity of life on the list. It was hard as Jess' nature was to laugh and smile, and we all kept giggling and gossiping. We did get the filming done in the end and Jess' contribution to Holly's Battlefront episode - her frank portrayal of life waiting for lungs - was a vital one.

She reminded me what is important. Jess absolutely adored her family and her friends, and would tell people that they were special to her. When she decided to do something, she got on and did it, never mind whether it was practical, easy or virtually impossible. I think post-transplant, it is easy to loose some of that spontaneity, to forget to tell people regularly how much they mean to you. I intend to remember that.

I am definitely struggling with survivor’s guilt. I know it’s not uncommon and I’ve felt it before when losing friends with CF, but it’s pretty full on at the moment. Why on earth am I so special that I got this magical chance? I know the answer of course; it’s because there is no rhyme or reason. Just because Jess gave and gave and gave and fought harder than was probably humanly possible...effort sadly does not guarantee who gets the winning hand. Our paths were so similar in so many ways; both pretty stubborn, both fairly high-profile fights, then she decided to do the Hydro Active... I felt like she was a younger version of me. Perhaps because of that, I had a naive subconscious belief that she had to make it through, because I did, so it was only logical. I hate that I was lucky and she was not. I told you, my blog, my ramblings. My thoughts are with her incredible family and those closest to her; I cannot imagine just what they are going through.

Jess fought for what she believed in. She believed very strongly in organ donation, so instead of sitting around she got up and fought. And never ever stopped. Ever. That’s my biggest lesson; to live and laugh, to love those around me, and to fight for what I believe in. And to never, ever stop.



www.justgiving.com/jesswales

Images courtesy of Holly Cocker - thank you Holly x

I think most of you have heard the heartbreaking news about Jess, but this blog isn't about that, as I can't write that blog just now. In fact I'm struggling to write anything coherently at the moment; my words seem to have escaped me, all words, my ability to type and to write. It'll come back, I'm sure it will.

This blog has been triggered by a girl called Tori who is waiting for a double lung transplant. Her post that got me thinking is here. She actually keeps two blogs, the other one can be found here.

Reading her post about sharing her story publically got me thinking. Particularly this bit:

When I talk about my CF I try to emphasize all the positives, tell people what I'm still able to do and how although I might feel crappy now I'll be better in a few days. I decided to submit myself to Live Life to Give Life as a face for their media campaign and am now having to forget all the positives and focus on the hard stuff, otherwise am I a good person to motivate people to sign up to the organ donation register?

I started reading back through my blog to see how I spoke about the struggle to keep going whilst waiting. I think this month gives a fairly good mix. I think (and hope) I spoke honestly, with a mixture of good and bad, because I truly believe that you can give a balanced picture. The illest of ill people laugh and smile and have good times. And maybe by sharing your personality it makes the story even stronger?

Life isn't black and white, therefore adding colour and texture to the picture you are trying to paint makes it more realistic...doesn't it? Then again, in order to highlight the urgency, it is important to focus on the severity. I know all too well that mask of "I'm fine" that people waiting for transplant painstakingly paint on. You have to, because if you start thinking about how hard life is all the time, it makes daily life pretty hard to face. But if you don't speak the truth about how hard life can get, can people really understand?



Yes that's me in 2006 in a nightclub. With my oxygen on. Looking a tiny bit blue.

I'm not attempting to answer questions here, I'm just very interested and grateful to Tori who gave me something else to think and blog about.

Apologies for the scatty and poor writing; any ideas or opinions on this would be great. And do stop by and say hi to Tori on her blog as she continues to write about her life, her wait and her hope for transplant.

My next blog will be about Jess. I just have to find the words.

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."

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 http://twitpic.com/photos/sarahbrown10

"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...

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.

OK so I actually do have a good excuse for not writing this time.

I've been in hospital. It feels a bit weird to write that, and it was even weirder being an inpatient again. I mentioned bits and bobs about not feeling right, naughty left lungbehaviour and paranoia but I will start from the beginning....

Just over a month ago, Dr C noticed a slight shadow on my Xray. I didn't think much of it but he said I had to come back a month later to have it re Xrayed. The week I was due to return, I started coughing more, feeling a slight crackling sensation in my left lung, and generally not feeling "right". I tried to vocalise this to the SHO as best I could ("something isn't right" isn't the most clear description really). I had no obvious symptoms; my lung function was steady and my X ray actually seemed clearer than the last time so whether it was to humour me or not I don't know, but she decided put me on Oral antibiotics and sent me away again.

I followed the course like a good girl but was just feeling worse and worse and then last Monday decided to concede defeat and booked another appointment for the Thursday of that week. I was still torn between thinking I was paranoid and knowing deep down something wasn't right. On arrival, I did my lung function which showed a drop of over 30% (down from my normal 80 odd percent to 50%). It was a bit of a shock to see it as it just felt so sudden; even back in my CF years I tended to have gradual declines rather than large plummets.

I was pretty scared if I'm honest and not overly surprised that they said they'd be admitting me that day. Since orals hadn't worked I was told we'd start IVs that evening as they were pretty sure I had a chest infection. It was so bizarrel being in hospital, back on IVs....drips and cannulas, hospital bed and hospital food, blood tests and wristbands....all these things used to be a regular part of my monthly activities but I haven't been back in hospital for treatment since my transplant. I have decided that having a transplant definitely makes you more of a wuss when you get poorly. I tried to keep fairly good humoured about it really, as things could be a hell of a lot worse. I also experienced a good strong dose of guilt throughout my stay; what the hell did I have to feel sorry for myself about? When there are people like Jess, like Tor, who are fighting hard every day still the other side of transplant?

The plan was that if my lung function didn't improve in any way shape or form by Monday, I'd be having a CT scan and a bronchoscopy - where they put a camera into the lungs and take some tissue samples for biopsy (to look for rejection). The dreaded 'R' is always a bit scary to hear so I focused on the "it's definitely an infection" bit. Which luckily for me, it seems to be; my lung function on Monday had gone up significantly so the IVs are working, and I'm thrilled to be back at home once more to finish the course.

I am feeling a little rough and washed out from the IVs, but as I say, I really do feel bad about whinging because I definitely know things can be a lot worse. And IVs used to be so routine for me, as did hospital admissions I suppose....I'm just so used to being well now, it came as quite a shock.

I shall try and be good and take things a bit easier till I finish IVs. I shall also try and stay away from further infections and out of trouble. Can't promise though...

The past week has flown by (as has the weekend, apparently). It's lovely being back at school; the fact I love seeing the kids so much when I get back reminds me I am in the right job.

Health-wise, I'm still not quite happy about naughty lung behaviour, however am beginning to wonder if I'm just paranoid. Lung func is ok, X-ray was clear...it's just a feeling (as well as the gurgly cough which is still there). It feels wrong to complain about it as it's really nothing compared to what poorly folk waiting for transplant go through on a daily basis. I think it's just that post transplant, I am more anxious about the smallest twinge or change. I'm sure it's fine (clearly talking to self here rather than anyone else...)

Things are moving steadily along LLTGL wise now the manic-ness (it's a word) of Save Jess-tival is over. Jess had to have her end of life talk last week. It's something that the team have to do when you get to the end stages of CF as whilst there is definitely still hope of a transplant, it is only fair to talk through the other possibility. I remember mine so well; mine was actually done after my massive pneumo that nearly killed me. It was essentially a talk to enable me to plan what I wanted to happen if we reached the end. It was a hideous thing to have to go through but I take my hat off to the team member who sat and patiently talked to me and listened to me for what felt like hours, as I asked them endless questions and went over the same concerns again and again. They were so patient and so helpful, and I actually felt a lot better after that; I felt that even if the end came, I would be able to retain a small amount of control. My heart aches for Jess having to go through these discussions and plans. It's so very difficult to face and it makes everything seem a lot more real.

Please keep helping LLTGL spread the word; we're always looking for volunteers and fundraisers so get in touch if you could help! A bit deep on a Sunday I know, but for some reason I've been thinking a lot about back then recently and needed to get it off my chest. (I've always loved how wonderfully suitable that phrase is for CFers).

Keep on shouting about it folks; knowing people are behind you every step of the way is hugely helpful when you're fighting for every breath, and Jess, we really all are.

It has been the longest blogging break in the history of mankind.

OK well not quite that drastic, but it's been pretty lengthy, even by my standards. I am, however, still here and fine. Woo!

Quick summary of life over the last few weeks methinks:

Firstly and clearly most importantly, Save Jess-tival was awesome. It was a huge success, thanks to the hard work of Sarah Milne, the LLTGL Trustees, Oli and various other fantastic helpers who worked their socks off before and on the day to ensure it all came together. The LLTGL blog will be updated soon with pics and details of the night so watch this space!

It was then the last week of half term, which was incredibly hectic with various performances in all schools, but all went well (thank goodness). Towards the end of the week, I started feeling a bit groggy and my left lung decided to start playing up. I have no idea why only the left one chose to misbehave, it may well be attention seeking antics however I will not be buckling and shall merely be referring to the naughty step (also known as Harefield) for any further bad behaviour. There's just generally a bit of chestiness and wheeziness going on, and being so used to being so well, it was quite frightening. Luckily on Monday I went to Harefield and came away with some antibiotics which are predominantly to cover all bases, since tests (X ray, lung func etc) were actually pretty good.

On Tuesday I went up to London for a photoshoot for Company Magazine. It was great fun as it was the first shoot I've been on where all your hair and make up are done for you and a vast selection of clothes are presented to you to wear for the occasion. The article will either be out in the January or February edition; I'll keep you posted.

Wednesday saw the pre-launch of the new NHSBT campaign. It was officially launched today; take a look at their website to see the vastly different and much more hard-hitting angle they are taking. I would love to hear what you think so please do leave your opinions in the comments section. I attended the launch and was asked to speak about my experiences to the assembled guests. It was a very interesting afternoon and I felt very honoured to have been asked to speak.

Then A and I went up to Derbyshire for a few days, to have a bit of a (much needed) break and to visit my wonderful Grandad. It was a really lovely few days, Derbyshire is one of the most beautiful areas of the country.

I was going to write something about "where has half term gone?" but I think I've answered my own question in the above. Am now off to do some LLTGL work to follow up this new campaign. I really really hope it has the desired affect...we know that softly softly hasn't worked, will this be the angle that jogs people into acting and signing the Organ Donor Register?

OK, some more answers for you fabulously inquisitive folk, but before I do, a quick plug to go to www.savejess.org.uk and buy those tickets if you haven’t done already!

So, back to the questions, some of these were posted on Facebook, in case you’re wondering where the original questions are:

Why do so few transplants happen and what can normal people do to help the success rate?
I wish there was a simple answer. I think it’s a combination of things, one of the biggest being the lack of donors. However there are many other influences including lack of resources and infrastructure, the need for improved donor management (which links back to resources) to ensure that organs are kept in optimal condition during retrieval and transit, and the fact that transplantation is so very very specialised. Transplantation is not yet a “norm” and until it is, these problems will continue to exist. But I do genuinely believe that one day, the UK will see transplant and organ donation as something that is just part of society and of life and death.

You’ve settled into a new house and job and are still into campaigning. What else would you love to do, other than have your own talk show of course? ;-)
To stay here and keep on enjoying every second. That is honestly my greatest wish (other than to be crowned queen of everything, clearly)

You keep your life with Adam private but can you tell us three great things about him, apart from the obvious ones.
His ability to see the bigger picture, his way of knowing without me saying, and the fact he loves me for being me.

I want to know what keep A going through your darkest moments?? Please don't feel you have to answer this I know it's not about you and A is a very private person.
I did actually ask him about this following this question. He said it’s difficult to answer as everyone is so different therefore the way people handle things are going to be so different. A big thing was definitely keeping his own life going, and I firmly believe the fact he kept a sense of “self” throughout was vital, especially if things hadn’t gone the way they did. I don’t know how the partners of PWCF do it really, and after co-writing this with Jac I was left even more in awe. Which is probably daft as I know people say the same thing about CFers and marvel at how they keep going. I’m rabbiting, I shall stop.

Do you find it hard doing all the tx awareness raising? Do you not sometimes just want to fade into the background and forget about it all?
Very interesting question. When I got my transplant, a lot of people gave me advice on the fact I would probably now want to drop all awareness and shed as much of my post-transplant identity as possible, so I was fully prepared to feel that way. In fact, I’d say I almost feel the opposite. I have a bizarre sort of fear that I will one day forget what it was like to be that ill. I don’t want to forget, I want to always remember what it was like to ensure that I never forget how lucky I am to be how I am now. The first time I realized I couldn’t physically remember the feeling of struggling for every breath, I panicked. Of course I remember it all mentally, but the physical feeling of it plays a strong part and my body finds breathing easy now, those feelings of struggling replay to me as if from a film; like watching someone else experiencing them, rather than myself.

I am who I am now because of everything that has happened to me, and I personally feel that it is vital to embrace each and every experience I’ve been through. I am not religious, nor do I believe in fate, but I do believe that my transplant is a gift and that I do have some responsibility to use it to help others get theirs. I don’t even feel this is a moral responsibility, just something I have to do. And want to do, more importantly. Maybe it helps me tackle survivor’s guilt, I don’t know. But I love what I do, and whilst I love it I will keep campaigning. It’s a massive part of my life, of me, and of who I am.

I was wondering if you've done any singing professionally or in a band or anything as you seem to have a good voice?
This one made me smile, because I don’t have a particularly good voice (not fishing for compliments here so don’t comment if you’ve heard me sing!) I am, however, very practiced and love singing harmonies, I’d say that’s where my strengths lie. I much prefer singing as part of a group, but I enjoy passing on knowledge of techniques to others, which is obviously where the teaching comes in. It’s a love and a skill I’ve developed rather than a natural talent, so no, very little performing (other than in choirs and groups).

What's your favourite film? And why?
Very tricky one. It depends what mood I’m in (what a cop-out!) I do love Richard Curtis films as I love his observations on people and society. I am also a big fan of Dogma. But one of my all-time favourites has to be It’s a Wonderful Life; my sister has written about it’s link with our family in her blog post here.

I wanted to ask - how has your transplant has affected those around you, your siblings, parents and your hubby?
That’s a very interesting question too...from my perspective, the main thing it has done is lift a whole lot of worry off their shoulders. When I was ill, a lot of life revolved around me. It couldn’t really be helped as whenever anything was planned, thoughts that would crop up would inevitably include “Will Em be ok? Is she coming with, if so, how, and if not, who’s around to ensure everything’s fine? Can I get back if there’s an emergency/she gets her call?” etc etc. It’s so wonderful now to get a phonecall from a family member telling me excitedly that they’ve just booked a holiday, no secondary thoughts of concern or worry. Life has normalized drastically, that’s the biggest change I see. But for a more accurate answer, I shall have to appeal to any family readers to insert their opinions in the comments section.

Has your transplant affected your relationship with your husband? Since you used to be so poorly and dare I say dependant on him and now you are equals so to speak?
Good question Gem, (congrats again btw) I think we were quite careful to ensure our relationship always remained a relationship. It was very important to me that he never fully became my carer, although, inevitably, a lot of caring was done and I was hugely dependant on him as I was everyone around me. My personal view? We’ve adapted rather well. We can be a normal couple, do normal things and I can participate in everything – yes that means the cleaning and the washing and taking out the bins as well (dammit). Maybe this was helped by the fact I always remained fiercely dependant in mind, if not in body. To the extent that Christmas 2006, just days before my transplant, I sat on the sofa giving cross instructions to my poor mother and husband who attempted to decorate the tree in the way I wanted it done. I think this links back to the other question about relationships and coping; everyone is so very different in the way they handle things, but for me, me staying “me” and him staying “him” was hugely important, both at the time and thinking of what may lie ahead.

Can you pinpoint the exact moment that pink became such a focal point of your life?
It was definitely around the time my health started getting worse. I used to be quite a grungy teenager (honest!) and was very much into black items of clothing and baggy jeans, although I always accessorised with sparkly rainbow coloured stuff, even then. As I got increasingly more dependant on others I found the princess analogy helped me come to terms with it. I think the pink thing tied in with that. Also, you don’t feel particularly girly and feminine when coughing your guts up, it may have been a bit of a counter-attack on my that. Or it may have just been that it’s a girly, cheerful colour. It makes me happy.

Can you still ride a bicycle? I tried and I can't :D
Do you know what, I have no idea. It’s going on my to do list.

Taken from the LLTGL Blog:

We are very very excited to announce our upcoming ‘Save Jess-tival', a fantastic night of music and comedy to honour our wonderful Jess and to encourage people to "think about it, talk about it and do something about it" (organ donation that is!)

Our headline acts are: stunning singer Natalie Imbruglia, and Canadian comedian Glenn Wool and Mock the Week favourite Ed Byrne, with more to announce later in the week.

This star-studded fundraiser will place on the evening of Friday October 16th at The Village Underground in Shoreditch, London. Doors open at 7.00pm.

Tickets are available NOW! Click here to buy.

For more info on our 'Save Jess' campaign, please visit http://www.savejess.org.uk/

All proceeds go to the Organ Donation Charity Live Life Then Give Life, of which Jess is an Advocate.


WOOHOO!

Check me out, I’ve made a start on the questions! There are quite a few (I don’t mind, I’m finding it really interesting to try and answer them!) so this may be several instalments.

What job are you doing at the moment, you talk about it but never really said what it is?
I’m a teacher. Sort of. I started last year when I was asked to start up a school choir at a local school, and it was a massive success which threw me into singing, music and education. I now teach at several different schools, doing some music and some vocal coaching. I absolutely adore it; with kids you never have a dull day. I also find it vaguely amusing that my job relies heavily on my lungs and breathing. I work part time (well, I try to work part time) as I have lots of LLTGL stuff to do as well.

When you were a student in Bristol where were your favourite places to party?
I wasn’t really that much of a party person! I think because by the time I was in second year my lung function was in the 30% range, I didn’t go out for wild nights very much. I did however love evolution (was that it’s name?!) where the DJ would play Sit Down and all the Bristol Uni students would sit on the floor leaving the UWE students standing (healthy rivalry. Honest.) Our favourite hang-out was a little dingy old mans pub which had a beer garden and patio heaters. And cheap drinks.

OK... how about what's the achievement in your life you are proudest of? And what's the one thing you want to do next more than anything else goal wise?
I think my proudest achievement is probably LLTGL. Em and I invested so much blood sweat and tears into it from the beginning, and to see it flourishing with such a fantastic team is a very proud moment indeed. Aims and goals? To carry LLTGL on to an even bigger and better future, but mostly, to squeeze every little drop of joy out of life and take everything it has to offer. And drink it up all thirstily and get my money's worth ;)

What's your favourite book ever?
My Family and Other Animals. It’s a wonderful, wonderful book that I’ve loved for many years, and return to reread whenever I’m at a loss of what else to pick up or if I’m feeling down. Close second is Life Among the Savages. Read both, they’re fantastic, and both very funny. I also love Morrie in his own words: a very very different kind of book but one I found very valuable when ill and asking myself big questions about life and death.

What is your lung function post tx?
Shockingly I am not sure of the exact percentage. It’s around 80% I believe, slightly lower that many because of the scarring caused by the infections post transplant and the fact that I have no working diaphragm.

How do you feel about having children post tx? Is it a complete no-no for you? I am listed for transplant, and its the one thing that scares me, the thought of not being able to have kids, and what any potential future husband will say about it...would be interested in your view, thoughts or feelings.
This is a very difficult question for me to answer as it’s very personal. Firstly, having children post transplant is not a definite no, I know post transplant CFers who have gone on to have children and who are still around. However there are risks, very similarly to having kids with CF really.

I’ve always had quite strong feelings about bringing children into the world when your own world is not very stable. Pregnancy and then looking after a child put huge strains on your body, ones that could cause harm to you, and potentially the baby. It’s a difficult question, at this time I feel that’s all I can say. But for the person who asked it, it’s not a no-no, and don’t forget there are other options, such as adoption and surrogacy. Try not to dwell on it as there’s every chance bringing up a child be a possibility for you. Somehow.

Before your transplant you seemed as positive and upbeat as you are now (I'm a complete stranger and I was sad/worried for you-but hopeful!). With everything that your CF came with, what did you do or what made you keep so up beat and positive?
Interesting question! I think it was people. I wrote this blog about optimism and genetics when I was very poorly. My fab family and other people I was surrounded by wouldn’t let me get down, or they wouldn’t let me wallow anyway (everyone is allowed a good cry every now and then). People were what kept me going. People close to me, people I’d never met, people who just wanted to make contact, people who had known me for years and kept the “me” part going under all the illness. I think my belief that people have the power to be as happy or as unhappy as they want to be helped; not always, obviously, but a great deal of positivity is about perspective. You can focus on the good or focus on the bad. That doesn’t mean life is that damn simple, but it means you have some control over where you focus your energies. I have always been lucky to have a lot of good going on in my life, but I pride myself on the fact I worked hard to keep the good times going, and to stay focused on them and committed to enjoying each day, just in case it’s my last.

What was your honest expecations in terms of a) actually getting a transplant and b) life after it if it did come?
My expectations of getting a transplant definitely changed along the way. At one point I was absolutely positive I would (I just knew it – that was quite early on) and at one point I knew I wasn’t going to be one of the lucky ones (that was the night I was dying and the family had to come and say goodbye.) The (as it turned out incorrect) realisation that it would never happen for me was really just one of huge sadness and disappointment, but on a scale that you can’t imagine. I wasn’t angry, just very sad. As for life afterwards...I didn’t really let myself dream about it. I figured if it got to the end and I’d imagined all the possibilities and then they never materialised, I’d be even more upset...even more upset about dying than just upset then, god knows where that logic came in! It was part of my “focus on the now” mentality, to try and keep me enjoying the good things that life had to offer at that moment. About 8 months after my transplant, my mum and I were talking about the difference and she said that she still couldn’t quite believe it. She knew we were going for transplant as it would keep me alive but she never imagined in a million years just what a transformation it would bring. My hopes of life post transplant were teency in comparison to the life I’m privileged enough to lead at the moment.

Those are the first few, will work on the rest. I promise :)

I am going to answer your questions, I haven't forgotten...in fact I have made a start. Some of you have challenged me....it's harder than I thought!

And I am going to blog, honest. But things have been, well, rather busy this week. Hopefully should be able to explain fully why next week, but for now if anyone has any media/PR/agent/celeb/musician/comedy contacts, please can you get in touch with me asap.

Ta muchly!