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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Quick summary of life over the last few weeks methinks:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Taken from the LLTGL Blog:

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

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

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

Tickets are available NOW! Click here to buy.

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

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


WOOHOO!

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

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

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

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

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

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

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

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

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

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

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

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

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

Ta muchly!