"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...

Oops.

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

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

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

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

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

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

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

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

I'm off to Nottingham tomorrow.

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

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

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

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

And yet another week goes by without me posting...

...but let me assure you it was a fantastic week!

The concert (which I had been losing sleep over I was so nervous) was absolutely fantastic. My Choir did me proud, and the performance was full of heart and energy. We have received loads of compliments including a letter to the school from one of the audience members, so it was most definitely a success. Thank you so much to all of you who sent good luck messages or who came to see it.

Very exciting thing this week....back in June 2007, Robyn and I decided to create a booklet on CF and Relationships, as we felt there was little support material out there on this subject. It was Robyn's idea originally and I said I'd love to join her in doing it. Sadly Robyn's transplant didn't come in time and naturally the project ground to a halt.

However after her family mentioned to me how much she would have liked the project to be completed, the wonderful Jac offered her assistance and suddenly we were up and running again!

Around 60 pwcf and/or their partners contributed to this booklet, and after many many MANY hours of work (far more on Jac's part as she fought with all the layout, design and proof reading) it is finally finished!

The booklet attempts to touch on all sorts of potential issues arising from CF being a part of a relationship; from starting out, to moving in, from sex to fertility, to end of life issues. All the content is provided by real pwcf and their other halves, and it is their contributions that hopefully make the finished product such a valuable resource.

The CF Trust have put it on their website for download, which is v exciting recognition of the work that has gone in, and the wonderful Gary Torrance Memorial Fund has funded a batch of booklets to be printed so we can send them to all the specialist adut CF units across the country.

Seeing it all completed made me feel both happy and sad; thrilled that we have completed it and that hopefully this will really help people, and saddened that Robyn will never get to see her idea as a finished product.

Last week of work before Easter hols for me this week - after Friday I am actually quite ready for the rest!

Look, it's me. Back when I was small and cute.

So I am now a quarter of a century old. A bit scary, but mostly very exciting that I got this far. That sounds incredibly melodramatic (and is a touch) but in all seriousness, if you look back over the years, it is quite miraculous that I am still here to whoop and dance around a lot.

To me, the biggie is 31. That's the age I really want to get to, and when I do, I shall have the biggest party in the history of mankind. This is for two reasons; firstly it will be 10 years since I was told I would only survive another year without new lungs, and secondly, and more importantly, I will have beaten that god-awful CF statistic: the Average Life Expectancy.

It can really hang over your head that one. Ironically, my rapid decline in later years meant it didn't actually bother me at all as I began to look upon it as a favourable target rather than an expiry date, but I know it’s a number that many people in the CF community focus on. Therefore I’d rather like to smash it up a bit when I get there.

Life for me at the moment continues to flow in the calm and rational manner that water does when hurtling over a rocky precipice. I have a huge concert coming up on Friday and I am both terrified and wonderfully excited. I hope it goes well; for my pupils more than anything…but also because I’m the one standing at the front if it all falls apart.

Quick musing (plus somewhat blatant plug) before I go; this post, is worth a read. I like it for several reasons; firstly it mentions me. Secondly it discusses the phenomenon of blogging; a topic I’ve chewed over a few times on here as I am truly fascinated in what attracts people to blog and to read blogs.

I can only really answer for myself on this one; I blog because I like to write. And, let’s face it, I like others to read what I write. I blog because I find it cathartic, I find it helps unjumble the spaghetti of my mind. I have used it as an outlet when the words are too frightening to say out loud, as a method of communication, as a diary, as a soapbox, as a notepad, as a canvas.

I read a variety of blogs myself. Mostly those of people with CF or transplant patients. Others I read for entertainment value or because of their writing style. I read them to keep up to date with people, with situations, and to educate myself. And if I’m honest, because I’m nosey. I love blogging, and it’s a fascinating and ever-growing phenomenon. Whilst we’re on the subject, do feel free to jot down any of your favourite blogs so I can go and nose over there too. And please, wish me luck for Friday…

Last week I did a talk at the Justgiving away day. For those of you who don't know, justgiving is an online service that facilitates charitable donations online. I have been using them for years for the CF Trust, and LLTGL is now registered with them as well.

The talk went really well, and I loved meeting everyone from the JG team - a very friendly bunch who kept bringing me cups of tea and were just very sweet, thanking me for coming to speak to them about my personal fundraising experiences. You can read their account of the day on their blog.

One of the organs which seems to be surrounded by the most misconceptions is the liver. (By the way I am off on one about transplants in case you hadn't gathered)

Unfortunately I have met people who have said they have said no to donating their liver on their organ donor card as they "don't want some alcoholic to waste it". Whilst I see that this is an understandable concern it saddens me. After all, perhaps if my donor had declined to donate their lungs in case a smoker ended up with them I would have died.

It's all so personal, so dependant on perspective, belief and choice. I actually find it really interesting how some people seem to be more reluctant to give certain organs. I know a few of my friends find the idea of donating their corneas too much to contemplate. I also never realised (until I read this blog) how important it is to tick "all" as some things (such as the small bowel) which I would have assumed was an organ do not have their own box on the organ donor card.

So anyway, this video I think demonstrates just why the liver is such an important organ and shows just who is waiting and hoping for that call, and who you actually might end up damaging by not ticking that box.

Click to watch a video on Bethany's Transplant Assessment. Speakers on...

OK so a slightly longer break than I promised - oops - but life is hectic (in a good way :))

So, Sunday...

We were all rather apprehensive due to the utterly dismal weather which is making it feel more like winter than the end of summer, but I was determined to complete the course no matter how hard it was bucketing with rain; I even brought my spotty brolly along just in case. Due to a) a lack of time b) a lack of imagination and c) the fact I wanted to wear it again, I was once more donned in my bright pink fairydresswithsparklesandeverything. On arrival we trudged across the muddy field to the CF Stand, where we were supposed to meet the other CF angels. Due to cold weather and slight disorganisation this year, we managed to miss most of the other Angels but a small group of us did manage to head towards the starting line together.

As always, I was totally over excited. I love the day at Hyde park; it’s the only opportunity you get to see other CFers and CF supporters (outdoors being the lowest risk) and it’s just so nice to be able to wave to the people who support you constantly, through virtual means, but the support is no less real. I was bouncing round chirping at everyone (on reflection it was possibly a tad too early in the morning to be so awake) and whooping so much I was in danger of wearing myself out before the race even started.

After posing for a few pics and chatting to the lovely CF Trust people manning the stall, we headed for the start line. Well actually, being in the slowest group (there was no way I was going to try and imagine I could run the whole thing and hold all the proper runners up by being in the wrong category) we were about half a kilometre back from the start line, and we weaved our way amongst thousands of other brightly coloured ladies, all eager to get started. I’ve said so before but I just love this day so much – the human spirit it brings out is inspirational to witness. People running for friends, for family, for those fighting illness, for those lost, everyone together, wanting to spur each other on and wanting to cross that finish line.

We finally crossed the start line 20 minutes after the start gun had gone off (and amusingly 5 minutes after the winner had completed the course) and with much whooping and cheering we were on our way. We set off at quite a pace, jogging past others, but I quickly felt my lack of diaphragm kick in. Actually I must admit I did not train nearly enough, but my stamina is now quite good, my ability to speed up remains about the same as a year ago. Consequently I lost my puff quite early on but was determined not to slow down past a strong powerwalk. As others moved forward to keep to their own pace, my mummy and sisters stayed by my side and we marched swiftly on, me grasping my mum’s hand and pursing my lips hard (just like I was taught at the Brompton – I hope my physios would be proud!)

I knew we were definitely moving faster than we had done a year ago, and each K marker we passed boosted my confidence that bit more. At times I found it a bit frustrating; I feel so well now and feel like I could just run, but need to accept that my body can’t do everything and running is one of the things it still struggles with. Due to the hideous weather, there were very few people marking the route to cheer us on, however those there were shouting encouragement and you could see the affect it had, everyone definitely moved quicker past groups of supporters than they did at quieter parts of the course.

We continued to weave our way along, power walking and jogging intermittently, and I was beginning to get very hot and sweaty (will choose to ignore any suggestions that inappropriate clothing played any part in this). Suddenly I recognised a hill ahead and realised we were nearly at the point at which I got out of my wheelchair to walk two years ago. We quickened our pace and as the final corner came into view, broke into a run. I could feel my heart thudding in my chest as my lungs tried to keep up with my enthusiasm, and as if realising I was struggling, my family grabbed my hands and we ran forward in a line. I was gasping (and fairly dizzy) as the finish came into view but crossed it at almost exactly 53 minutes.

53 minutes!! I couldn't believe it. I was hoping to come in around the hour but that is way better than I imagined. And even more importantly it was a struggle, and I wanted it to be a challenge as, well, otherwise I can’t really justify asking for sponsorship! Overjoyed and exhausted, we headed back to the CF Trust stand to congratulate fellow runners. Unfortunately the weather was just far too cold for a picnic, so we returned home fairly swiftly.

My legs have been aching like anything since but ohmygoodness I love that feeling! It’s as if I did something real and sporty (I can pretend can’t I?!) and even better my lungs feel fine and did do within minutes of me stopping. I think I will always do the Hyde Park 5k, every year, for as long as I can, because it was my first ever race and because it will always remain so dear to my heart as witness of my transformation into a new life with new lungs.


2006

2008

Still time to sponsor....click here to do so!

I can't believe I haven't posted in almost a month! That is pretty shocking. I tend to post of course when there's something to post about; I wouldn't want to write for the sake of it.

It occurred to me the other day, I have an awful lot of material I have written for a book (some of it from this blog) which I am currently doing nothing with so I might post a few bits of that...

My youngest sister turned 18 at the beginning of the week. Thanks to me being rather poorly she grew up a little quicker than perhaps she should, but it still feels weird that she is now a real grown-up (well as grown-up as turning 18 actually makes you.)

Work is going well; I think I am still struggling to adjust to the fact that I'm not immediately perfect at this. Thinking about it logically I think it's because I haven't challenged myself properly since Uni. When I was ill I always ensured I kept myself busy but of course they were doing things I was naturally good at (talking about myself) so it came easily. I got told at work the other day "you are the smiliest person I've ever seen!" which I took as a huge compliment! It reminded me of one of my old favourite quotes: "Of all the things you wear, your expression is the most important" which I used to remember whenever I felt down about looking so poorly. Anyway I can't help smiling. It's genetic.

The Breathing Life Awards were held last Thursday and looked amazing from the clips I have seen on the net (which can be seen here). It's a very glitzy night organised by the CF Trust to recognise people with CF's achievements; everything from getting through the toughest times to academic and sporting achievement. The emotion there on the night is incredible; I was lucky enough to win an award in 2005 and it really was a night to remember, so massive congrats to everyone who went and was nominated this year.

I hope everyone else is out and about living and enjoying life, and making the most of this weekend's beautiful weather so far this weekend! Long may it last...

I know I know, I am a terrible person who is ridiculously behind on her blogging and I vow not to let this lapse happen again!

I had to have the day off of work the other week as I had exhausted myself. Now before anyone gets too worried about work being the cause, I am thinking running from place to place (Leeds > Germany > London > Newcastle > London) and not stopping for 16 days on the trot was probably the cause…

So anyway, work (being great) insisted I take the day off, so for the first time in ages, I lay in bed as if I was “poorly” and tried to rest.

And I hated it. As I lay there, flicking from channel to channel trying to find something which wouldn’t slowly kill off my brain cells one by one, I had a very sharp and vivid flashback to when I was ill and this was all I could do, and it panicked me. The feeling of being home and in bed whilst everyone else is at work now for me merely holds bad memories. As A said, I am going to have to get used to enjoying days off again!

Last weekend, A and I decided to do a massive spring clean and essentially remove as much of 3 years worth of contents that we possibly could. In the past, due to my naughty behaviour, the only ever time A got the chance to do big throw-outs is when I was away in hospital (safe from any dust and cleaning product fumes that might emerge) but we had never, both of us, really gone over the whole house.

Having never done a full spring-clean before, what I didn’t expect was the emotional side of it all. Hidden away in cupboards, buried under various documents and letters, emerged traces from my past. A letter I had written to a friend, chatting excitedly about finding “our new house” which never got sent as I had a rather large pneumo the day after which kept me out of action for some time, cards from when I was in and out of the Brompton like a ping-pong ball (how people kept up the patience to time and again write to me I have no idea but I am very grateful), a letter from a beautiful young lady with CF who is sadly no longer with us as her transplant never came, lung function reports which at the time I was pleased with as they’d gone up 2% but I look now and cannot believe the difference. Bitter-sweet memories which are tugged to the forefront of your mind by triggers like a card or a gift, which is one of the reasons I am such an atrocious hoarder; things hold so much significance to me and to various episodes in my life.

I have also signed up (third year running!) to do the hydro active, which now appears to be called the Adidas challenge but which shall always remain hydro active to me. People are already joining the Angels so please do hurry and sign up if you want to help us raise money for the CF Trust. I am looking forward to getting training and hopefully my ankles will be significantly thinner than last year...

A while ago the CF Trust asked to give a presentation to BOC (British oxygen company) and didn't think too much of it, however as it loomed nearer it suddenly appeared that I would be speaking in front of the key representatives for 20 BOC related oxygen groups worldwide. Slightly more nerve-wracking than I thought then.

However the day itself went really well. Firstly I must point out this was the company that supplied my chemist with Cylinders, when Oxygen supplies were good. The changeover (a result of privatisation) was to a different company entirely, although I obviously aired my grievances to ensure that everyone present would be acutely aware that this mustn't happen to them.

I had to speak for an hour, so I chose to educate about Cystic Fibrosis as much as possible, so included a great amount of detail about CF and about life living with it. It was pretty similar in many ways to other talks I have done, but with a lot more focus on oxygen. Obviously.

I was overjoyed to be given the chance to talk to BOC. I think young people using oxygen is a greatly neglected area, and this belief is supported from the very first booklet presented to me when I initially received my oxygen concentrator. There was a nice smiley woman, glamorous looking, but definitely in her 60s, sitting in her armchair smiling wearing her nasal specs with the concentrator behind her. The majority of advice, expectation of needs and service is angled towards older (predominately COPD) patients, which is quite understandable seeing as they make up a vast majority of the customers. However us young folk - not only pwcf but those with lung diseases like Rachel and Nattie have who I have talked about before – we are a significant group too and we have very different needs.

Living as a 20-something on oxygen, you want to go out, you want to carry on living, go to restaurants, out with friends, perhaps even clubbing (only did it once but damn glad I did). I wanted to talk about the psychological issues but wanted to do something which would make the assembled understand a little better what it is like going out for the first time wearing nasal specs. So as I broached this subject, I presented each person with luminous thin strips of post-it notes which they were instructed to stick to their face. An amusing site, but a serious reason behind it; the acute knowledge that there is something on your face which shouldn’t be there but that everyone can see…that’s what I needed them to feel .When I told them all they could remove them several of them actually kept them on, which I saw as a gesture of support and empathy, and I was touched by it. Either that or they liked the luminous colour against their skin...

I met some great people and I hope that I gave them a good idea about what living with (not just living on, but living with) oxygen is like. Whilst I am free of the constraints of 24 hour O2, so many people, old and young, require it 24 hours a day, and for these people it is absolutely vital that they have a good quality service run by supportive and empathetic people who understand their customers’ needs.

Hydro active 2007.

I woke up bright and early raring to go. Long-suffering A was forced out of bed on his only day off to make me beans on toast (figured I probably needed something a bit more substantial than a cereal bar) and I in the meantime spent an inordinately long time donning my pinkandsparkly fairy costume.

I drove my grandma, (who in a fit of madness had signed up to walk it too) and grandpa up to Hyde Park, and complete with rather large and glaringly pink banner, we walked up the road towards the main gate. As we reached the meeting point, I could already see clusters of pink winged people and other bright yellow ladies (CF Trust T-shirts) I got a round of applause as I arrived and whooped appropriately in return.

After some meet and greeting plus plenty of posing for photos I hollered at the Angels to head towards the starting line as it was by this time 5 minutes to 11. We trouped across the field, me leading the way (ON FOOT still can’t believe it) and squeezed onto the track to join the other 20 000 odd ladies who were eagerly raring to go. Events like this are just such amazing examples of human spirit. People walking for loved ones, for those they have lost, for those that have overcome adversity…I just love the atmosphere.



We were whooping with glee as we set off, helped somewhat by the rather nice group of armysoldiermen who were waving at us from a balcony. I quickly lost interest in carrying the huge banner I had made and my ever faithful Angels took it in turn to carry it (mum swooping in if ever a camera came into view).





It was gloriously sunny with a strong breeze; fantastic for keeping cool, not so fun for those carrying the banner and trying not to take off. First k was fine, and the second, then pain round my ankles began to kick in. I could feel the fluid swishing around (mm) and my ankles tightening as they inflated even more. I was determined to keep up a good pace as after all this is supposed to be a challenge; so many wonderful people had sponsored us I felt I really had to keep going briskly to make it worth their while.



As we approached 4k my legs ankles and feet were really beginning to hurt. To keep myself going I just remembered how last year it had been my entire chest and my lungs aching and burning, and how incredibly lucky was I just to have dodgey fatfeet this year instead of tiny fading breathers. Seeing I was struggling a bit Lucy gave my hand a good squeeze; nothing said but enough done, I knew I would get to the finish.

In the final k we approached a slight incline, various angels getting behind me to give me a bit of a helping hand! Then suddenly I could see the leafy shaded corner and had a flashback to seeing my two grinning physios waving me over to get me out of the chair exactly a year ago.

We turned that final corner and were hit by a wall of cheers; people lining the edges of the course shouting and encouraging everyone on for those final 500 metres. We moved ever closer to the finish and I couldn’t suppress the joy that was bubbling up inside me. With a rather loud whoop I broke into a run hearing “oh god she’s running!” from various shocked Angels and sprinted (well stumbled) towards the finish line.



The feeling of joy was just indescribable; what a rush, what a buzz, I just felt so alive!! People were throwing their arms around me, hugging me, squeezing my shoulders, everyone just so thrilled to be part of an event which was a million miles away from last year.

It wasn’t until we moved towards where the medals were being handed out that the tears came. Never in a million years could I have dreamt how this summer would be. Every day is so amazing, days like this even more so. I love my life so much, am so incredibly lucky, and to be able to share so much joy and celebration with so many people was just fantastic.

My ankles are still a little swollen but I feel absolutely fine. I am still grinning from ear to ear about it all, a huge well done and thank you to all my angels and lets hope the money we have raised for the CF Trust will go to find a cure and prevent children born today going through what I have been through.

www.justgiving.com/emilysangels2007

Some more piccies of the day:


I may have spotted the camera.


Thank you Angels xx

Very sadly, my friend who I spoke about in the previous post past away. My thoughts are with her family and friends and she will be greatly missed. It is sadly another huge reminder of how much work and awareness raising there is to be done.

Onto brighter things, I had the most fantastic day today! It was my mother’s school summer fete and I went along because not only have they been amazing and supportive of my mum since she started there, but they are kindly giving all the money from the Raffle to the CF Trust. Laurence Dellaglio opened the fete, I got to chat to him a bit, he was very friendly and posed for a pic and said he was in awe of what I had gone through.



I accompanied my mother as she set to work on one of the stalls, and I enjoyed it so much I took over her shift and stayed there. People kept worrying if I was ok or if I was wearing myself out but I just love to have something to do and be busy, and I think because I am so used to doing things running on empty I now feel a bit like superman (oh dear the superman complex that Harefield have warned against). It was lovely to chat to all the children, and the parents who have been so sweet and bought me presents after my transplant despite never having met me. The committee had all purchased LLTGL T-shirts and so there was quite a few of us sporting them dotted around the fete. The weather couldn’t make up its mind and kept thundering intermittently but it didn’t spoil the atmosphere at all.

Then as a massive favour to us, Richard turned up to draw the raffle and thank everyone for their support. It was the first ever time he has seen me without oxygen. I turned round to see him, ran at him and he threw his arms around me, lifting me up as he did so, exclaiming “did you just run?!”. I don’t think he could believe it is such a transformation. I chattered away (hard to believe I know) till he had to go but not before taking a video of me on his phone for Judy who he said wouldn’t otherwise believe it when he told her! I jumped up and down whilst he was filming just to demonstrate what a complete transformation it really is. It looks like I might be on their show again in the next month or so, so watch this space…




So yet again today I was surrounded by amazing giving people who just want to help and want to support me and my causes…people in this world are really pretty great when you look closely.

It seems to be another quite tough week for the CF community. I follow the blog of a girl in America who received a double lung transplant, rejected, then went onto receive a single lung transplant, then sadly rejected again. She died a few days ago, and messages of condolence have been pouring onto her site. She was incredibly brave and would talk candidly and openly about death and her feelings towards it. Reading other people’s experiences is helpful and useful as it allows you to feel you are not the only one going through these things. It also makes your experiences seem more normal and less frightening when you hear other people have been through the same and made it out the other side. However the bitter side of that is you watch people in a similar situation to yourself not do so well, and sometimes sadly die. It’s frightening yes, but I am sure it is frightening when anything that focuses your attention on your own mortality happens.

I received an email from a friend of mine today who has been waiting for transplant for some time. She informed me in a calm and dignified manner that she is now too ill to undergo the operation so is making the most of the time she has left.

It makes me sad and it makes me angry. It shouldn’t be this way. Even worse the friend in question had several false alarms, none of which ever came to anything. Thanks to the CF Trust and our Laughter for Life! gig, a new donor coordinator is being employed by Harefield to try and cut down on the number of false alarms caused by non viable organs. But why is this being self funded? And why is it not nationwide? As far as I am aware, in America they have these coordinators in all hospitals with ICUs, and when this was introduced the number of transplants went up threefold. I just feel disappointed for her and her family that this chance has been missed. She is as I said extremely level headed and I am sure she would not want any pity. Instead she is focusing on putting as much quality as possible into the time she has left.

Things with me are absolutely fine, I am happy and content and living a fantastic life. All this is only thanks to the gift of a stranger. It’s just another reminder to me really that I am just so incredibly lucky. Just because it happened for me does not change the fact that for 50% people waiting for double lung transplants it will never happen. National Transplant Week is coming up soon, hopefully there will be lots of media attention on the issue around that time. What about your work place? Could you do anything? Perhaps order a free box of UK Transplant stuff and have it in the foyer of your offices or something? Have a think…

(my that's a lot of weblinks. Check out who thinks she has mastered it)

Wednesday night, I was sitting on the sofa, in my usual pretence of resting whilst actually working on campaign stuff and generally mucking around on the net. Suddenly a message appeared on one of the forums I use saying it had just been announced that Gordon Brown’s son has been diagnosed with CF. Bemused I turned on the TV and watched the news item which was by now on most channels. Then when I saw Nick Robinson’s report which mentioned my speech at Downing Street two years ago I realised things may get a bit busy, which turned out to be a rather accurate prediction.

The phone rang as I was still watching the news that evening and marked the start of what was to be a rather hectic 24 hours. On Thursday the phone first went at 8.30am and then rang pretty much continuously throughout the day. Thank god for A’s mum and my mums friend who both made the mistake of popping round to see me and found themselves fielding phone calls, taking messages, welcoming camera crews, and their most formidible task; forcing me to shut up and lie down for five minutes to rest, as well as eat and drink in between talking.

I am a CF Trust ambassador (along with my partner in crime Oli who was equally rushed off his feet yesterday) so I expected and welcomed the job of explaining CF to various people in the media (plus of course I featured yesterday as “the girl with CF who did that speech”). I spoke to a couple of newspapers (two of the articles viewable here and here), did a radio interview, and quite a few TV interviews, with the last camera crew packing up and leaving around 6pm. Consequently I am being meticulously behaved today (relatively speaking) and am staying in bed with my high-flow mask on, which tiny lungs are very much appreciating.

As you may have gathered from this blog, I enjoy telling people about CF and my life with it; I find it cathartic and that it alleviates some of the feeling of helplessness which accompanies my present situation. Doing ambassadorial work has presented me with opportunities, and more importantly has allowed meet a variety of different people, and continues to facilitate what for me is this vital link to normality – I don’t think people realise just how much social interaction is created on a day to day basis through simple things like at the station, at work, and at the supermarket and other seemingly mundane activities - even now I am quite restricted due to oxygen and general refusal of compliance from my lungs.

As for the overall trigger to this mass media interest in Cystic Fibrosis, my thoughts are well and truly with the Browns, as it would be with any parents learning of a new child's illness. I do not know what it is like to be a parent who is told that their new baby has a life-threatening condition, but I have talked to my parents about their experience and spoken to various families and parents about their experiences. When I was born, my parents had the choice and freedom to tell who they wanted how much they wanted, and to come to terms with CF in their own time. As I understand it a newspaper broke the story on Wednesday night, so consequently this is a freedom they do not have, and regardless of who they are they will like any parents be trying to adapt to life with CF as a family.

Cystic Fibrosis is not a trivial matter, and it can be a terrible illness. There is absolutely no point me saying otherwise as my present circumstances would completely belie any such statement. But what I tried to make clear in any media I appeared in is that Cystic Fibrosis is a part of your life, it does not dictate who you are or the life you lead. As I said in a previous post, when I discussed how we use the label of an illness, the mere diagnosis of having Cystic Fibrosis does not instantaneously qualify for or except you from anything. The fact that you have CF will not change regardless of how you decide to view it and so the statements released on behalf of the Browns which say that they are staying positive and optimistic and focusing on their healthy fit and thriving baby boy reveal a fantastic attitude and one I agree with.

When the CF Trust was formed in 1964, cystic fibrosis was a childhood illness, with an average life expectancy of just 5 years. By the time I was born, this had risen with predictions that I may well reach my 20s, and for children born today with CF, the outlook is even more hopeful again, with a current life expectancy of 31 and rising with funding and research allowing for constant improvements in care. For me CF has wreaked havoc and indeed wrecked my lungs, but not my life. I am determined to try and keep a positive attitude; I don’t see what harm staying optimistic will do and it may even help.

Anyway I still have a whole lot of living to do.

This Sunday featured our 4th annual “Sing in a day” fundraiser. Every year so far has been a huge success, but we were detouring slightly this year as instead of a large classical piece such as Vivaldi’s Gloria, we decided to do a Gospel workshop. We had our largest ever turnout, with a grand total of 85 singers arriving eager to sing at 11am, ready to work (or rather being worked) very hard all day, and perform in a fantastic concert that evening to family and friends. I do quite a lot of fundraising, well as much as I can, and before anyone mistakenly thinks this is because I am some saintly being it is merely because I absolutely love it. I love everything about it, the huge variety of people you get to meet, the way it not only brings people together but brings out the best in them, the atmosphere and the spirit of the whole event. Plus of course that wonderful feeling at the end that something so fun you have raised lots of money for a good cause.

Because I love it so much this year also brought frustration. Part of the whole event is the preparation and setting up, but to ensure I had enough energy to attend on Sunday, I lay around like an extension of the sofa, whilst other people got busy cutting, sticking, filing and planning. In accordance with my ever logical and reasonable behaviour, I instantly became furious with my mother and A who were sitting in the other room completing one of the display boards, as clearly the fact they were continuing to work without me was a ploy to deprive me of part of the experience. I knew my fury was completely irrational and had an urge to just go out or do something to work off the frustration (I think this is fairly common; a few years ago when my mother and I had an argument, I staged my most unsuccessful storm out ever, wheezed my way about 150 yards down the road before surrendering to my lungs and returning home, then on arrival found my mother had inexplicably moved all the furniture into the centre of the lounge in a fit of rage and was hoovering manically round it). However this time I couldn’t even jump into the car and drive somewhere, and knowing this made me even more angry with anyone in the vicinity (if I haven’t said so before my family are so lucky to have me). I decided to do the next best thing and shut myself in the bathroom for a nice relaxing bath, realized I couldn’t even do that on my own as I needed help washing my hair and the tears of frustration started to show. A somehow knows exactly what to say and what not to say to help me snap out of these moments (as I want to I just need a bit of help sometimes) I am not quite sure how he does it, suppose it is years of practice.

Having thrown my toys out the pram satisfactorily, I was ready to put aside what I couldn’t do and get on enjoying what I am able to participate in. Sunday itself was just great, the atmosphere at these things is always so positive as everyone is there to pitch in, have a good time, with the end result raising lots of money for a good cause. The workshop went smoothly, with everyone seeming to have a good time. Once the initial admin was done I curled up on the sofa in the foyer, listening to the rehearsal progress and trying to resist the urge to rush in and start clapping and singing with everyone else (somehow my brain and lungs don’t really communicate on what is and is not feasible). The concert in the evening was fantastic, every year the quality surpasses what we expect and this year was no exception. I really want to get an audio clip of my favourite song on here but am not quite sure how; if I can find a technological genius to instruct me I do so. Most excitingly, it looks like we will have raised about £1000 for the CF Trust again so a big yay and thank you to everyone who participated for that!

Following the extreme busyness of the weekend, I donned my high-flow oxygen mask and slept on and off for the whole day yesterday. Consequently I still do not have all my blood results back as I was supposed to ring for the final few yesterday, but I am taking the splendid stamina my lungs showed on Sunday to be a rigorous medical test revealing there is currently no infection present. I am still planning on a pre-emptive IV attack before Christmas to ensure the best behaviour possible from my tiny breathers. Speaking of which (Christmas, not lungs) my mother and I received our Christmas cards which we had ordered in plenty of time this year and so were feeling rather smug. As we tore open the box to examine our purchases, it soon became apparent that we may not have been concentrating nicely. There were some of the ones I remember seeing and liking (“those are mine I chose those, mine” I believe I said in a nice sharing way as I grabbed them) and a great deal which we don’t seem to remember clicking on, although I do have hazy recollections so it is definitely due to our lack of focus. The damning evidence that we had clearly lost interest by the end is four tiny packs of blank cards depicting what appears to be a disgruntled looking otter sporting a Lilly leaf as a hat. Some of those amongst you can expect to receive them masquerading as quirky Christmas cards.

My nurse from the Brompton came today to take some bloods to see if we can work out if I have an infection brewing. It is hard to know as there is such a fine line, plus my lungs in their consistently Diva-like behaviour have decided that oral antibiotics are clearly passé so prefer to jump the queue straight to IVs. She did point out that it may not be anything new, and instead just my lungs new level of function since the summers antics. If that is the case then I am sure I will adapt, I am more worried about infection going untreated and causing further damage…I shall just wait and see and not ponder on it till tomorrow.

Far more excitingly, yesterday a nice man from the Oxygen company phoned me to say he was on his way round with a liquid oxygen…thing. The real name of it escapes me, mainly because it so resembles a Dalek I keep expecting it to start wheeling after me down the corridor shouting at me in a monotone way, I am rather tempted to name it Derek, Derek the Dalek makes me giggle every time I say it (I name all my equipment for those who don’t already know, v bad habit which I now cant break for fear that new equipment would spontaneously disassemble out of jealousy). He arrived and came in to assess where my dalek should go (sadly this meant he got to see the chaos that is my house at present due to a busy week or so) and eventually settled on the hallway, as it is well ventilated, not near any electrical equipment, and near the front door which was quite important as this beast weighs 11stone. The engineer was fantastic and explained everything really clearly. He was here for some time, going through all the technicalities (there are a lot of them) and demonstrating how everything works (I’m not sure I understood everything as I tend to change things in my head so that I remember them, for example the fact that “steam” will start to escape from main dalek as little cylinder is nearly full translates in my head that dalek is getting puffy having overexerted, which I don’t think is quite accurate). So I now have a great big dalek sitting in the hallway, and the small clever refillable cylinder which will give me back some freedom, yay!

Spot the difference...

To be honest I am mortally afraid of the thing, which I shouldn’t be as it is clearly very safe, as long as you don’t do anything stupid like try and touch the nozzle you use to fill it up with as your hand will probably stick to it what with it being stupidly cold - I don’t think I am exaggerating when I say -200 degrees (incidentally when someone tells you constantly to make sure you don’t do something, does anyone else develop and overwhelming urge to do exactly that?) So nervy in fact that when he left and the small cylinder started making what I can only describe as honking noises I phoned him straight away and asked him to come back, only to confirm that this is just because it is new, and releasing pressure or something…I don’t know, as long as it’s not about to explode or something I don’t mind, although if said noises continue going out in public is going to be rather amusing (“would you like any cash back?” “Yes please could I…HONK” like some childish comedy gag).

When he was explaining to me how long it would last, saying how I could go out for half a day but then might need to pop home and refill it, I felt tears of happiness at this potential new freedom forming but managed to swallow them down before coming across as a hysterical over emotional woman. Even if I need to run it on 4 litres I can go out for about 4 hours but most excitingly, when the cylinder runs out, the fact I can refill it from the dalek in the hallway means I won’t be trapped at home waiting for a delivery of new cylinders. I road tested it last night and headed over to a friends house for lasagne and a sophisticated and profound film (pretty woman). The cylinder was quite well behaved, it seems to honk less when in use but complied and did kindly so at least three times which I appreciated for amusement value. I can now look forward to attending our Gospel workshop fundraiser for the CF Trust this Sunday (info@performingforcf.co.uk for more details) which I didn’t think I would be able to go but am excited at the prospect of being part of what should be a fantastic day. Hurrah for Derek the Dalek!

Adjectives and formal English vocabulary fail me right now so I shall start by using a phrase invented by my mother and saying I am currently Smilier than Mr Smiley of Smileyland. I am back safe and sound in the hospital, glowing with happiness after what has been an incredibly exciting day.

Being aware that I had a big day coming up, I settled down nicely last night, ensuring I had done extra physio and an extra nebuliser, and had everything within arms reach so I was sorted for a good nights sleep. Being completely prepared like this is a rookie mistake, it actually ensures you will not get to sleep at a nice early hour because you have something important the next day, a bit like if you know you have a big interview coming up so you don’t want bags under your eyes and are still frowning about that at 3am whilst watching the clock. Luckily I wasn’t as bad as that, but my lungs did throw a mini strop last night by being considerably achey and then deciding to bleed to make me sit up and take notice that they were in fact still in charge. I spoke to the on call doctor who gave me a quick assessment and verified that whilst we will keep an eye on the bleeding it wouldn’t hamper today’s proceedings.

This morning I was nervous, I really was. More that my body would let me down and I would miss out on stuff – once I run out of energy (generally much sooner than anticipated due to over excitement and silly behaviour) I have to stop, there is absolutely no choice in the matter, as if I try to carry on past that I do just fall asleep. I got up early to fit in all my morning tablets, physio, nebulisers and inhalers (and eat a bowl of porridge, check me out carbo loading as if I am some kind of real athlete) and then lay back down to recuperate. The troops (family) arrived at 8.45 to help with the important part, donning the costume, yay!

As we approached the park, my nerves began to subside, as it became clear my lungs felt they might actually enjoy today and so seemed to be cooperating nicely, probably out of nosiness rather than anything. Due to having an acute fear of running out of oxygen I had in fact accumulated the cylinder rations for the south east of England and put them in my car, perhaps overdoing it a bit but better be safe than sorry. We all met at the CF stand and the air was electric as everyone picked up and donned their pink sparkly wings, people gathering from all over the UK to form Emily’s Angels, so many meeting for the first time.

I did incredibly well (if I do say so myself) at adhering to the strict “no talking” rule. OK so it wasn’t no talking, but I did talk considerably less than normal and sat very still most of the time, so by the time we got to the start line and actually set off, my respiration rate was still nice and slow and my muscles were hardly aching at all. The walk round was just lovely. It was cloudy at first, but as we set off the first signs of sunshine were beginning to break through. People were chatting merrily, my mother (who is even more excitable than me) louder than most started pushing the wheelchair with great enthusiasm however appeared to loose interest shortly after the start line and left me in the hands of other pushers for the rest of the race (thanks guys!). we had a nice rota going with people switching duties with wheelchair and huge O2 cylinder on a trolley, but the recently betrothed Mrs W and Abby did vast amounts of pushing, thank you both and all the other helpers.

I absolutely loved the entire thing, I was able to just sit there looking around at this huge multicoloured stream of humanity pouring round the corners of hyde park. Sponsored walks and runs exhibit human spirit at its best – people are driven by passion and by love, and the supporters round the edge are a huge part of it as they encourage cheer and clap throughout. We got a tad carried away in the enjoyment of it all and slowed to a bit of a saunter at one point but sped up again around the 3K mark and headed quickly towards and past 4K. As we past this mark, I felt the nerves begin to build again, I was desperate that once I got out of the wheelchair I would be able to walk from then to the finish, I really didn’t want to have to sit back down again, but was well aware I might have to. Suddenly I heard my name being called, and it was my two personal trainers (also known as my physios who had the task of getting me from “breathless at sitting” in July to “walking outdoors” today, not to mention the more formidable task of getting me to stop talking when walking) were there, they had calculated back from the finish and found a point which they estimated was just over 500 metres away, and they thought I could make it.

This was it, it was now or never, and I was definitely nervous. I had managed to walk about 400 metres in total on the corridors, but that often had breaks in, and so I had no idea if I would be able to do it. Fantastically, the watertight security had a nice open patch right next to the track so said trainers came down and walked with me, keeping a tight eye on my breathlessness score (signed on fingers, 1= not breathless at all, 10=so out of puff I sound like Thomas the Tank Engine and probably would not be standing at the time). The deal was to try and stick between 3 and 4 and that if I hit 5 I should take a break, which obviously in my head I moved up to 6 pretending I couldn’t quite count properly. I set off at a cautious pace, but was waving a bit too much which sensible people around me quickly put a stop to. After that I concentrated on breathing and walking and found myself moving steadily but quite comfortably round the corner of the track, and suddenly the finish line came into view.

I was trying hard to purse my lips as talk, but you try pursing your lips when your heart is dancing with joy so much you cannot help but break into a smile. I kept at a steady pace, I hit 5 about once breathlessness-wise but slowed a little and moved back down to a comfortable 4, and most importantly kept on moving. There were a lot of people shouting for us by this point, and whilst it was a bit of a blur I could see face after face of people who I knew and loved. Suddenly I could hear my voice on the tannoy, and the announcer was telling the crowds who I was (apparently I am waiting for a ‘double transplant’, not satisfied with one clearly) and why I was doing this. People were cheering and shouting, my Angels were all around and I was enjoying every single step.


As I approached the line my mind went sharply back suddenly to a very specific memory; I was in high dependency, so it must have been just over 4 weeks ago, and I had just got out of bed to sit on my chair for breakfast, and I couldn’t catch my breath. I was so breathless the nurse was sitting next to me talking to me trying to bring my heart rate down, and I remember having tears in my eyes, watching the chest drain bubble viciously as the air leaked from my colander-like lung, thinking if I can’t even leave the bed now I would never make it to Hyde park. There is nothing like meeting a target to mend your spirit and booster your confidence and I focused on the white line on the floor getting nearer and nearer. Having trained hoping to do 400 metres, approximately 530 metres after leaving the wheelchair I stepped over the white line. As I did so a cheer went up and I couldn’t help the tears escaping. I had done it. I hadn’t died from that lung collapse, I didn’t still have a chest drain in, I wasn’t stuck in hospital, I am alive, and I was outside, and I was stepping over a finish line of a sponsored walk. As I stood their getting my breath back, I noticed a CF Trust balloon go up in the air. It felt suitably fitting, because as well as doing this challenge for myself, and for people with CF, I was doing this for those we have lost to CF; for Gaz, for Chloe, for Kirsty, Amanda, Stacey, Sofia, and so many more.

We head back to the CF Trust stand to sit and chill with food and drink, and also give people a chance to mingle a bit and me a chance to grab and thank as many people as I could for their incredible contribution and support, how many lucky girls out there can claim they have 70 Angels helping them complete a challenge?! The adrenalin kept me going and my lungs decided I deserved a bit of mingling time too, so I was able to chatter away quite merrily and had a wonderful afternoon. It is only once I got back to the hospital and lay on the bed that I felt absolutely exhausted, but that is perfect and just how it should be, I now have my mask on and can lie here and relax, having had one of the most memorable and enjoyable days of my life.

Oh crumbs, this entry is so long I am not sure that blogger will actually let me publish it, it may spit it out in contempt. I will post some photos on here as soon as I can; (current ones stolen from other people) a big thank you to each and every person who has supported me along the way, both from afar or here today in person.

This has been one of the busiest weeks in the history of creation of mankind. Well it has for me anyway. I really am so proud of my little lungs, they are champions really. Last weekend was the hen weekend! Woohoo! It was absolutely fantabulous. Saturday was probably the busiest days of the three, comprising of a bollywood workshop, meal out and a trip to the local club. All of which I attended. The instructor was called Dimple - fantastic name but made me slightly afraid as to me it suggested pole dancing or similar. Anyway she was lovely, a good combination of encouraging and praiseful, (is that a word?) yet pushed us a bit which we needed at times. We wafted around a lot attempting to be both graceful and energetic and it was really good fun. Most definitely provided me with a workout, and I had to switch to my mask half way (felt like a big deal, haven’t worn it out with friends before) but it was either that or pass out blue on the floor which I didn’t think was very in keeping with the bollywood style (no sitting down was not an option, I was having far too much fun.)

At the meal we presented the hen with a box of goodies including all the obligatory tack such as flashing L plate and handcuffs to attach to her person. With our hen still wearing all of these (with great style I must add) we trekked off to the night club, stopping en route for said hen to jump inside a fire engine and pose with a slightly stunned fireman. I must admit at the club I did feel overwhelmingly self conscious with my O2, as, let's face it it isnt something you see every day so people were looking. This was soon relieved by some bloke (nice guy, not the brightest crayon) asking me what it was. The music was loud so I simply gestured at the large word OXYGEN emblazoned on the side to which he paused looking at it then said "Yeah I know, but is it real?" Had me and the girls in stitches for some time afterwards at the thought of someone who overthinks things that much to go and get a fake oxygen cylinder and manage to obtain the tube and nasal specs to take out clubbing with her...

Sunday was a much needed “hangover roast” (thanks Mrs H) and Monday included a trip to the Green fair – a rather hippy event which we hijacked for our own purposes, namely to have a picnic in the sun with champagne, strawberries and scones. Imagine my delight when at the fair I stumbled across a stall selling adult sized fairy costumes! On finding a fushia pink one I was over excited to the extent of temperature induced pink cheeks, and could sadly think of nothing else until I had purchased said garment. I have a good reason anyway, I can wear it for the run in September. Otherwise I would never have bought it, honest...That weekend I also attended the 60th Birthday of a family friend, and instead of presents he requested donations for the CF Trust, raising over £1000. I am not very good at expressing myself in person about these things but I was very touched and it was a great do with muchly dancing due to his mauritian roots.

Being half term week, we took the opportunity to go away for a few days – cue minibreak to Wiltshire to see very special friendies and to stay in a cosy B&B in a room that must had been created especially for me – it was just SO pink and frilly! We had a wonderful couple of days down there, it was gorgeous and sunny which helped and we got out and about a fair bit, again my lungs doing admirably for such a busy time.

Yesterday was my youngest sisters birthday. She is 16 now, and I cant quite believe it. On our 16th birthday, each of us have had a big banner type thing made, which contains photos throughout our childhood with amusing captions creating a story underneath. I remember mine so well, I walked into the classroom of the music school I worked at on a Saturday morning and it was up on a huge silver sheet – obligatory naked baby photo and all. Smallest sister seemed to have a wonderful day yesterday anyway which is what it was all about – still not liking that she is so grown up, although she will of course always be my baby sister, the other one is 18 and living it up at uni and I still think of her as a tiny small! Mind you the two of them are far more grown up than me, I think they just let me pretend I am older therefore wiser to humour me.

Like I say, I am incredibly proud of my little lungs - they did an incredible job and I was able to do far more than I thought I would. Next week marks a year since my lung collapsed in a truly spectacular fashion. I am going to blog about it, so that I can get the memory out of my system (I am already having dreams about it which sounds v daft but am sure that will pass). If someone had told me the schedule for this past week when I was in hospital a year ago, I would have laughed. Well actually I would have breathed at them with a look of sarcasm and humour on my face. So what better way to mark a year later than to have been to 3 parties in a week plus a nightclub?! Just imagine what I'll be like with working lungs...

A few weeks ago I was in a very profound and thoughtful mood and i sat down at the computer, and just started writing. It was a sort of stream of conciousness really, a rather cathartic exercise i must admit, but just me trying to get down on paper some of my main feelings about my current situation and waiting for transplant. As it was initially intended for my eyes only it is very very honest and blunt about the whole situation.

Following talks with the PR people at the CF trust about how they wanted to draw attention to transplants and organ donation, i sent them this piece incase it might be of some use in raising awareness. Anyway yesterday i got a call telling me that they had had a huge response from journalists and selected the Times to do a feature on it all in their section Body&Soul!

It's all a bit nervewracking really - obviously i am not stupid and i sent it with the intention of it being published or brought out into the media circuit, as that is how you raise awareness. however this is a new thing for me, as its not just an interview (i dont think) it includes something i have actually written myself. And as anyone who actually reads this blog will know, my ability to write coherently comes and goes...!!

The interview is this week so i suspect the feature will be out within the next few weeks. I have shown both my parents my piece and they were both extremely complimentary, which is a huge relief, as that's all that matters really. And even if it makes just one person pick up the phone and register as an organ donor, then it was worth doing. Am now heading back to bed to do my IVs (which incidentally stands for Introvenous antibiotics, as I dont think i explained that before) where it is warm, as I can feel icicles forming on my extremities!