Jamie Whyte’s views (“Donating Organs could prove a costly decision”, Wednesday 15th February) sadden me. Whilst his misconceptions about organ donation are shocking, they are made slightly easier to understand after reading that he trusts his wife so little as to make sure his life insurance “pays out less if I die than the net present value of my likely future earnings” so as not to “put temptation in her way”. This lack of trust, even in those closest to him, perhaps goes a little way to explaining his views.

Mr Whyte, a senior fellow of the Cobden Centre, believes that signing the organ donor register “increases the chances that you will die”. He suggests that as a registered organ donor, doctors working to save your life will end care sooner, as the temptation of removing your organs will become too great. This shows a huge naivety about both the process and the premise of organ donation. He uses cold calculations – “If you are a donor, your death produces a net gain of three lives. If you are not, it delivers a net loss of one” – to support his absurd theory that the medical professionals attempting to save your life are really only after your organs.

When you are admitted to a hospital, having suffered great injury or severe illness, that hospital’s priority is you. No hospital wants to lose a patient – to put it in as cold and clinical a light as Mr Whyte does, it doesn’t look very good on their books to lose a patient, let alone all the moral, ethical and social reasons that people practise medicine. Medical professionals are there to treat their patients. There is no great conspiracy; they want to care for their patients, heal their patients, and enable their patients to return home.

I wonder if Mr Whyte knows that, statistically, he himself is more likely to need an organ transplant than to become a donor. Does he have a family? What if his wife or someone else he loved needed a transplant to save their life? I assume from his sentiments in this article that he would turn one down on moral grounds, and let them die. Three people die waiting for a transplant every single day, a figure which starkly contradicts the image he paints of a society where hospitals whip out people’s organs at the earliest possible opportunity.

People who become organ donors would have died regardless of whether they made that decision. The only difference is that in a moment of great tragedy, they have chosen to help others go on living. There is no greater gift, no greater legacy that someone can leave behind. I should know; I would have died in 2007 were it not for a generous stranger who I will never have the privilege of meeting.

I hope that Mr Whyte finds more trust and happiness in his life. I hope that City AM, who published such absurd views, also publish an article countering this opinionated piece with concrete facts. And I hope that people think properly about organ donation, look at the facts and discuss it with their families, before making a decision, perhaps one that could save nine lives after they have gone.

Eep, a very neglected blog! In fact I only realised how long it's been since I posted when I got an email from a follower, checking everything was OK! So apologies for that folks.

As always, great big lapses in blogging means that life is going well, and far too fast. Health is fine at the moment; following my last bronch I was started on steroid nebulisers and they also discovered I had a chest infection (which explained why I felt so hideous afterwards). The combination of whacking that infection on the head plus these steroid nebulisers has been really positive and the best bit is, I had my monthly bronch on Tuesday and for the first time, the airways were open enough that they didn't have to do dialitation! I'm due in clinic in 4 weeks, but this is an excellent sign as it looks like said airways are getting bored of mucking around and starting to behave nicely.


Stomachtwistyop wise, I've had my outpatient appointment and I've had my pre-op assessment and I FINALLY have a date for the op; 6th April. Am a little frustrated to say the least, as this will be a grand total of 5 months after referral, and I know the surgeon who reviewed me put me forwards as urgent. But at least I have a date, the op will get done, and hopefully my right lung will be impecibly behaved afterwards.

The most exciting event in the last month is probably the fact that I somehow managed to win the Lifetime Achievement award at the Justgiving awards! It was a wonderful night, full of inspiring stories and fantastic people, and I was genuinely shocked to win. LLTGL were up for Best New Charity but were beaten by Shelterbox. We all had a fantastic evening and you can read more about it on the LLTGL blog here. Here's a few pics:

Work is great, exceptionally busy, but am currently on half term so am trying to catch up with myself. I am hoping next half term is slightly less frantic as I do feel like I'm chasing my own tail most of the time at the moment! What a nice thing to have to worry about though, being too busy. Hopefully won't leave it another month till the next update!

Wheezy Penguin saga: the sequel.

I was a tad premature at celebrating my release from hospital, as that weekend, due to raised temps, a drop in lung function and a lot of chest pain, I was re-admitted for IVs to treat a suspected chest infection. The infection was probably all related to the closed airway business, but it was important to get on top of it asap so it didn't cause any trouble.

Clearly my body felt like I wasn't getting enough attention as it proceded to be the week of completely random and unnecessarily silly blood results. First my kidney function danced about in a naughty manner, but quickly returned to my usual "misbehaving but only enough to be kept on the naughty step" level. Then my potasium result came back sky high, causing everyone to move quite quickly to get me attached to a heart monitor (my mother did suggest that this may have been nothing to do with potassium, but simply to confine me to my room and stop me from causing trouble - how rude). They began to return to normal, I was de-wired, and then my ciclosporin level (immunos) jumped up so high I wasn't allowed to take any for 24 hours. That was hugely unsettling as you have it drummed into you as a transplant patient that you must never ever miss a dose. It's settled a bit now, but I'm on a much lower dose than I was on when I went in, still not sure why.

I had my 2nd bronch on Tuesday where they did the dialitation thing (look at me using a real medical word) which sadly I believe was done using a balloon for the stretchification - no pixies involved. They also froze (?) the airway to stop it re-closing. Dr C says I will need another bronch next month and may need the procedure repeated. I felt fine when waking up, other than the fact they'd hit my tonsils and they were now so grossly enlarged that they looked like comedy ACME tonsils. Had a bit of trouble talking and swallowing for a few days but they're going down now.

I was discharged on Wednesday (woohoo!) and IVs are due to come to an end on Monday, when I'll go back to clinic to hopefully hear that my lung function is back up and all shiny and nice again. Fingers crossed that that's the end of the Wheezy Penguin dramas so I can get back into the swing of normal life! I'll be referred for the fundoplication operation asap and by the sounds of things that will take place in January.

On a completely different note, our new LLTGL T-shirts are here! Please head over to our website and consider buying and wearing one; help us spread the word about Organ Donation and save more lives. Thank you!

No apologies (I give up with those or I'll be apologising every time I post from now on!)

Quick recap of what's been going on.

Health-wise: everything is really good. Whatever it was that caused me to be in and out of Harefield seems to have vanished *touches wood 20,000 times* and lungs are still wonderful and behaving beautifully. Big yay for them.

Work-wise: everything is fab; September seemed to arrive with a bang and I am (as usual) extremely busy but also (as usual) enjoying every minute. It's lovely to see all the kids again, the little ones shoot up over the summer, it's frightening!

Hydro Active: As always, I took part in the Hydro Active (now the Adidas challenge but to me it will always be the Hydro...) "Team Jess" as we were called this year was formed from a number of Jess' friends and supporters, and her wonderful mum Jackie. We were all dressed in pink and I was in my fairy dress which I have worn for the Hydro before. Holly had brought along some rather bright face and hair paint which I ended up absolutely covered in! I looked so special that on the bus on the way there, an elderly couple paused to take a picture. I am choosing to see that as a compliment.

It was a lovely atmosphere as usual but of course for Team Jess, it was achingly sad as we had all hoped that we would be doing this year's 5k along side the girl herself. Jackie was incredible; I have no words to describe how much admiration I have for that woman, suffice to say it's extremely evident where Jess got her dignity and strength from. We paced round the track in a sort of power-walking fashion, stopping to pose for pics at each Kilometre sign and Holly (the queen of multi-tasking) was tweeting for LLTGL all the way round!

As the finish line came into view, we all held hands and ran towards it, raising our arms as we crossed the line. On finishing I felt tears pricking my eyes and turned to see all Team Jess members were feeling very much the same emotion. We all hugged as the tears flowed, the joy of finishing, and the sadness of Jess' abscence. It was a very emotional moment but one I feel proud and priveledged to have been a part of. You can still sponsor Team Jess by clicking here.

Last weekend, I was in Cardiff to give a talk at a very prestigious transplant event. There were 500 delegates there and so the pressure was on, but it went well and I received a standing ovation at the end. More details as to this talk coming soon on the LLTGL blog, but here's a pic for now.

I cannot believe we are already in October, and this month is going to be extremely busy, in fact I don't think I have a single free weekend. What an absolute joy to be able to say that - no big pauses needed to rest up and let my body recuperate. Pop over the Tor's blog to see what life used to be like for me. Fingers crossed her call comes very very soon.

“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

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."

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.

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?

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!

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!

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.

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.

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...

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.