Archives: Work

Nothing really changes in my life these days – it’s getting harder and harder to find something new to write about that’s not just droning on and on about how hard things can be, or what minute fluctuations my chest is taking at the moment. So I figured that if I’m not up to making sweeping changes in everyday life, the least I could do was to give the blog a bit of TLC.

So here we have it – the all-new SmileThroughIt, courtesy of the lovely people at WordPress (forr all your blogging needs!). Hopefully, it makes the whole thing a bit easier to read – I was surfing the other day and saw the page for the first time in ages and noticed just how SMALL the font size looked on the front (I only see the “back end” of the page, which is all fresh, clean and white, totally different to the published version). It also, I hope, makes it easier to navigate the old posts, or the most recent posts, as well as seeing when I’ve published.

Anyway, as far as the “me” update goes… well, nothing’s changed really.

I say that, of course, but there have been things going on. It amused me last week actually, when I was catching up via text with a friend of mine who’s got himself couped up in the Big House (read: hospital) and he was asking what I’m up to at the moment. I said I’m not doing anything these days, not really up to much. Apart from still doing CF Talk. And the work I’ve got going with Live Life Then Give Life. And talking to the campaigners behind My Friend Oli. And the odd bit of writing.

I suddenly found myself looking back over my text wondering what, indeed, the Roman’s had ever done for us. (Apologies to Monty Python). In fact, said friend said as much in his reply. Told me I clearly didn’t have time to work, even if I was up to it physically.

So yes, I think to myself, nothing ever changes around here, but I’m still finding myself pretty busy. Saturday was a blessed day of nothingness, somewhat of an oasis after a busy week, which had been draining not just physcially, but not helped my the mood swings and negativity flying about.

Sunday we popped over to K’s ‘rents to say hi and for K to raid their loft to try to find some old books of hers to help with her college course. K being K she’s decided not to do the simple, middle-of-the-road, easy-as-the-proverbial-pie kind of project that they expect their students to do, but rather to launch into a semi-professional study which, all things being well, she is hoping to then go on and get published if we can find the right journal for it. The only thing is, it means she needs to wrap her brain back around the statistics info she learned way back when. I am, naturally, completely useless for this as I can’t really count much higher than 10 and ask me to do division and I’m stuck beyond halving something.

While we were there we were, I think it’s fair to say, attacked by our tiniest niece and nephew. I think it’s also fair to say that they’re not going to be the tiniest for long. The little one is nearly as big as his sister now, despite being 13 months younger. In a reversed nod to Animal Farm, he’s just discovered Two Legs Good, Four Legs Bad – it’s so much easier to cause havoc when you have your hands free to grab, hold and throw things while you move. His sister, meanwhile, is mostly contented jumping on me and her Auntie K.

Today I even managed to venture across town to pick up my own prescription, something which I’ve been relying on Mum and Dad for for a while now, although when I told Mum I’d done it tonight she told me off for not asking her to do it (you can’t win sometimes).

Just writing all this down, I’m starting to realise not only that my life is still pretty full and varied, albeit in a different manner to that which I was used to, but also why I started this blog in the first place. More than just a place to air my frustrations, or my minor triumphs, I began writing these posts nearly a year ago in the hope that putting it down in words might help remind me that life’s not as bad as all that and if I only take the time to look around, I’ll see all the wonderful things I have in my life: my family, K and her family (my second family, really), my friends: a network of people who never let me forget myself. More than anything, maybe I’ve reminded myself to Smile Through It.

I’ve spent most of my day today sat in front of my shiney mac edit suite working on cutting together a pilot ad for Live Life Then Give Life.  I’ve been working on it, on and off like most things, for the last few months and we finally got all the footage in the can last week, with thanks to the wonderful Rheya who shot all the video for me.

This is the first time I’ve used my Final Cut Pro system to edit anything with a purpose, beyond toying around with it.  And boy, is it a steep learning curve.

The whole thing comes with bundles of documentation to go with it, ostensibly a guide-book, but it’s the kind of program where reading the book actually doesn’t do a whole lot to help you get to know the software – the only way to learn it is to just throw yourself into it and see what happens.

Patient as I am with technology(…), it’s managed to make even my cool-headed, even-tempered approach a little fraught at times.  It’s hardly surprising, though, since the whole edit suite is a package of 6 different programs, with an instruction manual 4 VOLUMES long – and that’s just for the video editing program.  All the other programs, like the soundtrack, titling and colouring software don’t have hard-copy manuals, only electronic copies within the software installation.

So I’ve been bumbling and fumbling my way through the most basic of practices, quickly establishing that everything I do has a) at least 3 other ways of achieving the same thing and b) they’re all quicker and easier than the one I tried first.

I’ve also discovered that a) I don’t know as much about this software as I thought I did at first and b) my brain isn’t big enough to learn all the things I need to learn in a single day just to keep up with the pace of the work I’m trying to do.

Similarly, it has emerged that a) everything in the instruction books is written into progressive lists of steps from A-X and b) it’s really hard to shake the habit of working through a whole day in list form.  And c) my brain is still at overload point.

Still, the ad is looking pretty good.  I had a bit of a mad one this afternoon, when I frantically text a bundle of friends for suggestions as to what music track I could put underneath it, which yielded some interesting results – anyone else keen on hearing ANOTHER inspirational clip backed by M People’s Search for the Hero?  Didn’t think so.  Nor me.

My music knowledge is pitiful, so I always fall back on asking the people I know who know their music and they all came up trumps.  The annoying thing about it is that I know all of the tracks (or almost all of the tracks) that they came up with, it’s just that my brain doesn’t work musically, so none of them occurred to me.  It’s an interesting side-note, that: if anyone wanted to think of a film-clip or quotation to fit something, I’d be right there, but asked to find some music to fit something, my brain draws a blank.

Amusingly enough, I had been cutting the piece to Mika’s Grace Kelly as a temporary fill-in with the right mood, and as I was getting my replies in, I finally managed to make the piece work with Grace Kelly underneath it, so as it happens I may not have needed the musical SOS anyway.  Still, it’s nice to know I’ve got people who still reply to my text messages, I suppose…

Tomorrow I’m off to Oxford in the morning for a quick once-over (nothing dramatic, I hope) and I’m hoping I’m not too tired to get back on with things in the afternoon.  That said, I’m not sure my brain can take 2 straight days of new information – it might over-heat slightly.

Full to the brim with new software knowledge I’m off to a) grab myself a cuppa and b) take myself to bed, where c) I hope to stop thinking in lists.

This week I have been going through good days and bad days alternately almost by the book.  The annoying thing about it is that I’ve yet to put my finger on a reason why one has been good and the next bad, other than attributing it to the regular see-sawing of my chest.

Pleasantly, the ups and downs of my chest have not been matched in mood, which makes a nice change having spent so long over the last few months with every butterfly flutter of the lungs causing a storm in my brain.  This week has been pretty positive, all things considered.

I saw my bro on another one of his flying visits and we managed to get a good family night in while he was back for all of 24 hours, as well as catching up over coffee the next day, both or one of which I wouldn’t have been able to do the last time he was home.

I’ve also started to roll along (well, nudge gently) a couple of projects that have been sitting quietly on the back-burner for a while.

Today I sat down with a couple of friends to go over some ideas for a short TV spot for the Live Life Then Give Life campaign, which we’re hoping will serve as a pilot to create a series of them to spread the word about organ donation through the website and other internet video sites.

They’ve taken themselves off with our discussions and brain-storms to draw up some story boards, which I’ll then hopefully go over with my co-director on Tuesday with a view to getting them shot as soon as possible.  The advantage of not knowing how your health is going to hold up from day-to-day and week-to-week is that there is a bit of motivation to try to get things done quickly while you’re feeling good and not sit about on your butt waiting for this, that and the other to fall into place.

Of course, we all know that blogging about it is usually the kiss of death to most of my projects, so we’ll just have to hope that this is the one that breaks the cycle.

I had a long chat to the co-ordinator of the My Friend Oli campaign this week as well.  Bizarrely, although we’ve exchanged emails and messages, I’d never actually spoken to her before.  It became clear pretty much straight away, though, that we’re VERY similar people and that if we’re not careful we’ll spend all day on the phone to each other.

When we did talk business, I discovered that the campaign is actually WAY bigger than I thought it was and looks like it’s going to be all over Durham this year.  We’d really like to introduce it at other Uni’s too, but although we’ve had great support from other Chancellors (after Bill Bryson wrote to them about it) it doesn’t seem to have materialised into support from the student body – and that’s really what we need, as it needs to be co-ordinated from the inside, so to speak.

So if you know anyone who’s at Uni and fancies helping out a very worthwhile cause (with an AWESOME logo, might I add), then please please please get in touch because it would be great to spread this further afield.

It’s nice to have a few things on my plate, but not to have anything that’s too demanding, that’s pressing too hard for my attention or causing me to lose sleep.  I seem, for once, to have struck the right balance.  Let’s hope I can keep it and not find myself flailing down towards that safety net again…

It has occurred to me of late, rather alarmingly, that I may be turning into a middle-aged woman.  Not in any real, physical sense, you understand – I’m not that weird, yet – but rather in what I like to call my “Mañana Manner”.

For years I’ve observed that strange phenomenon in women who feel a little over-weight to protest over a long, languid Sunday roast of a dozen or so courses with free-flowing wine and truffles to finish that their diet starts “tomorrow”.  So many “tomorrows” are there in the world of middle-aged women that it’s a wonder today every happens at all.

Losing weight is obviously not an ideal goal for me – being the svelt 52kgs (that’s 8st 2lbs in old money or 114lbs to our American cousins) I am at the moment – but I have found the “Mañana Manner” creeping into other areas of my life ever more prominently as I continue to enjoy something of an “up”.

For weeks now, I’ve been promising myself that I will get back to the screenplay I abandoned half-finished at the back-end of May, when I was whizzing through my 6-page-per-day target almost non-stop.  My birthday upset the balance at the end of the month, and then my prolonged “outage” set me even further adrift.  Now, I seem to find excuse after excuse to avoid putting myself in front of the screen to finish off a piece of work I’m actually pretty happy with.

Last week didn’t help, turning as it did into one of those run away weeks which sweep you up from the start and end up dumping you at the weekend with hardly a moment’s pause for breath (paradoxical, I suppose, since I have hardly any breath to pause for) .  An aborted call in the middle of things didn’t help, but I honestly could not tell you whether or not the last three days really did have their full 24 hours or if someone decided to switch us on to fast forward for a little while.

You know the sort of thing I mean: when you go to bed on Monday, wake up in the morning and it’s Sunday and although you know you’ve been busy all week you can’t for the life of you think of the things you’ve done.

So it was hardly a struggle to continue to find reasons not to get back to my desk, although I’m getting pretty good at that now.

It started innocently enough as a case of writer’s block – reaching a mid-point in the story which needed a kick and not being able to work out where it should come from.  I can’t, however, really cling to that as a reason not to have confronted it in the last couple of weeks, since I sorted that problem out in my head a good couple of Monday’s back.

It is much more a case of the intrusion of the “Mañana Manner” on my writing habits: I can’t possibly start writing today, I’ve got to finish this chapter of my book first.  I can’t possibly start writing today, it’s the middle of the week and I shan’t be able to write tomorrow, so what’s the point in getting into the swing of things, just to lose the flow again?  I can’t possibly write today, it’s nearly the weekend.  I can’t possibly write today, it’s Sunday.  I can’t possibly write today, there’s a small black-and-white dog lurking outside my study window.  I can’t possibly write today, the sun isn’t quite bright enough to echo the mood of the piece I’m trying to create and I’m not going to be able to find the right “zone”.

It’s remarkable how creative one can be in forcing oneself not to be creative.

What’s more, it amused me as I thought these things through to myself as I washed-up (yes, washed-up – if that’s not a sign of improvement, I don’t know what is) that for someone who can procrastinate so spectacularly well around doing something I’m passionate about, how is it possible that I manage to park my butt in front of my computer to bang out nearly 1,000 words of blog most days of the week?  I think my priorities may be a little skewed….

Still, the most important thing is that you’ve got something to read to waste 5 minutes of your day.  After my transplant I’ll have plenty of time to do things for myself, for now I choose to put you, dear reader, first.  I’m that sort of a giving kind of person, me.

It’s been a gorgeous few days here in the haven of middle England which I call my home – sunny, hot, beautiful skies and all the other things that come with summer, but no wasps, bees or semi-naked men parading their non-tans.  No, wait, that last bit’s not entirely true…

Still, I’ve been feeling great and much perkier than I have for a long time.  The steroids are clearly doing the trick and have certainly ramped up my appetite, which can only be a good thing.  The IV’s are having an impact, too, I’m sure, although not as marked, largely due to the fact that I didn’t wait for a full-blown, raging infection to get started on them this time and they’re doing brilliantly at damping down what is already lurking in my lungs, as opposed to being deployed as a reaction-force.

Yesterday I had the pleasure of being well enough to take myself over to Mum and Dad’s to have lunch with my bro before he shot off on holiday to Bulgaria for a couple of weeks.  Clearly travel with the Army isn’t enough for him, so he’s off to see some of the Eastern European summer before he shoots off on more international travel masquerading as “training exercises”.

It was really nice to be able to drive myself to the other side of town, hang out for a couple of hours and drive myself home without feeling more exhausted than someone who’s really exhausted from doing something really exhausting all day.  Nice metaphor, huh?

I’ve been trying to actually get some work done while I’ve been feeling good, too, but somehow I seem to have achieved nothing in that area.  I think I’ve been enjoying having a clear head and chest so much I’ve either been out and about “doing” things or been surfing the net catching up on all the mildly brain-working sites I like to browse but often don’t have the brain-energy to absorb them.

I think tomorrow I might ban myself from the internet and do a bit of project-focusing for a while.  Although having said that, I know I’ve got a physio appointment in Oxford to go over my exercise regieme in the afternoon, so I’ll probably convince myself that I should be allowed to relax and surf the net in the morning because the afternoon will be hard work.

I’ve got to admit, though, it’s really nice to be in a position where I’m chiding myself for not working enough, rather than sitting feeling crappy wishing I could get up out of bed or off the sofa to do some of the things I want to do.  I just need to use that feeling to inspire me into actually getting something done…

It’s been an up-and-down few days (when isn’t it, these days), but more up than down.

The trouble is, this evening I feel so tired and my back is causing me so much bother that try as I might, I’m struggling to pin-point the highs and lows  of the last few days.

A definite high was seeing K’s big niece, little niece and nephew, all of whom I haven’t seen for ages.  It was nice to see their dad, too, although even nicer of him to go get us a paper (thanks, Rob!).

I managed a good hour or so of fairly sedate entertainment, leaving K to do most of the running around and baby-chasing as little Jack set off exploring the wonders of the un-baby-proofed apartment.   Having palmed off the high-maintenance duties to K, I settled myself with a game of chess and a bit of a story book/CBeebies magazine, which is much more my kind of pace.  Although chess with a 1-year-old knocking about is a far more defensive game.

The rest of Sunday was gainfully employed resting, although we did pop over to my ‘rents for some food in the evening.  The trouble is it’s such a long way away now (yes, 20 minutes’ drive is a long way now) that to avoid being a dangerous, half-asleep driver on the way home, we literally only get to swoop in for food and then run away.  I know parents are parents and they don’t mind things like that, but it does bother me somewhat how anti-social we can be.

I suppose it’s one more thing to look forward to post-transplant: those long, leisurely Sunday lunches which start at lunchtime and roll on to dinner time with a good deal of laughing and chatting in the middle.  Another thing to add to my “To Do’s”.

Saturday was very quiet, resting up at the promise of baby visits on Sunday, and expecting a slightly fuller day of visitors were it not for the odd drunken mishap changing plans around. (No names.)

Today started really well after a bad night’s sleep.  I woke feeling surprisingly spritely and sat reading for a while before showering (with my oxygen!) and doing physio and finally getting through the few pieces of copy I had to write to finish off this issue of CF Talk.  We should now be at a final proof stage, which I should receive in the next few days, and  I can check it, correct the mistakes, sign off the whole thing and get it out.

This afternoon has seen a bit of a down-turn, with my chest getting a bit tighter and me more breathless, with a slow onset of not only a headache but a good deal of back pain, too.

As I write, I’m about to whisk myself off to bed to see if I can settle myself and sort it out, before trying to get an early night’s sleep for a change.  I could really do with a good, long night’s kip.  Here goes…

What seems to consume me more than anything else at the moment is an overwhelming desire to “do” something – anything really. I spend so much of my time sitting around, either watching TV or surfing the internet looking for articles and information which may interest, entertain or educate me that I just crave the normality of “doing” something.

It doesn’t help that my favourite films and TV shows are ones showing people with high-powered, mile-a-minute jobs which demand 100% attention from them at all hours of the day. I think I’m a frustrated workaholic. There’s so much I want to be doing which I just can’t do because my energy reserves are lower than an Iraqi oil refinery once the US has taken it’s “share” from the depot.

It’s one of the sillier frustrations with my life and I suppose it’s only natural when one is confined within the same four walls 24/7 with barely a break for air. I guess it’s also the attraction of being well enough not to have to think about whether I’ve got enough energy or if I’m well enough to do a job or make a trip or take a meeting – a pleasure I’ve not enjoyed for a good few years now.

When I think about it, my situation now isn’t all that different to how it was a few years ago, it’s just that all my timescales have telescoped. Whereas when I was at work I had to think about whether I had enough energy to do something on both Tuesday and Wednesday, I now have to wonder whether I can do something at 10am and 11am. All that’s changed is the timescale and the size of the task.

When you look at it like that, it takes away a touch of the rougher side of life. It’s all too easy to dwell on the things you miss most when you’re pretty much invalided out of life. But making the fight seem familiar somehow lessens the blow and makes things more comprehensible, even if it doesn’t necessarily make them any better.

It’s all about perception – something I know I’ve written about on here more than once – and the advantage of perception is also its curse, namely that it’s easy to have when you’re feeling OK, but it’s the first thing to abandon you when you start to slide backwards.

Here’s hoping I can cling to this little slice of perceptive thinking for at least a few days and keep myself in an upbeat mood. I much prefer me when I’m like this.

It would appear that my Monday was, in fact, a delayed Sunday (or a British Rail Sunday, as I prefer to call it), bringing with it as it did all of the slowed-down, energy-less deflation that I was expecting to get as a hangover from my Brummy exertions.

I haven’t been feeling completely rubbish, but it was certainly a LOT harder to get up and out of bed this morning than it has been for the last week or so.

A good session of physio once I had managed to get up and about seemed to sort things out, but I took the day very easy anyway, spending most of it on the sofa watching the extras on my King Kong DVD (have been totally addicted to the superb production diaries) and getting through 3 episodes of the first season of Entourage, a show which managed to sneak under my radar but which is brilliantly my kind of thing, following as it does the path of a Hollywood actor and his close-knit bunch of friends. Aspirational TV, I guess you could call it.

Once my batteries were sufficiently DVD-charged, I did manage to plonk my butt down in the study and get some work done, reviewing pages for the new issue of CF Talk and responding to some emails which have been hanging around for my attention for a while.

Also had to tune in to Richard & Judy this evening to catch the ever-wonderful Emily turning on the charm for Mr & Mrs daytime (or is it prime-time?) TV, along with her charming and incredibly open mother, whom I like to call Mrs T. Using footage from the various interviews they’ve done with Emily over years, pre- and immediately post-transplant, I have yet to see a more convincing advert for the benefits of organ donation that seeing the contrast in Emily in those films.

The thought of the immense and immeasurable ways in which my life could change with just one phone call is at once hugely exciting and tremendously saddening. It is impossible to see into the future and to know what lies in store for me, but the thought of such amazing, intangible possibilities sitting so close but so very far from reach is a hard one to reconcile in one’s mind.

It’s a process in which I feel like a terrified passenger, willing the runaway train to stay on track and ease into the station set for new life, whilst all the while knowing that one little bump will send it hurtling off the rails.

How do you live your life from day-to-day with something like that hanging over your head? I’m not sure even I know, except to say that if I wasn’t living it, then there’d be no point waiting for the transplant, I guess.

So, for those of you who are in touch with the Big Man Upstairs, now’s the time to get on your knees, bow your heads or do whatever comes most naturally to you when you pray and ask Him to bless me with a second chance. And for those of you who don’t believe, well, maybe He’d like to hear from you, too.

Happily, the jinx doesn’t seem to have lasted too long, which is definitely a good thing.  After a bit of a slow down at the end of last week and a weekend spent doing as little as possible, things seem to be back to where they were before I decided to blog-big about my projects and plans.

From now on I intend to only highlight imminent events on here, and to talk about everything else only once it’s safely behind me.  Which is odd, because I really don’t believe in jinxes/superstition.  As my brother delights in telling me, it’s unlucky to be superstitious.

So, the last couple of days have seen me finally bite the proverbial bullet and really get my head into CF Talk to get it swept off to the designers.  They do a fantastic job, but do insist on having FINAL copy before going to work on it, as they’ve found to their cost in the past that if people are still chopping and changing while they work then a certain turn or phrase or clever image in the text that spurs them on to create a funky look for the page can disappear and leave the reader bemused as to where the page-layout idea came from and possibly whether the designers were smoking something while they worked.

And I know for a fact that Tin Racer is a no-smoking facility.

The trouble with having to provide them with final-final copy is that I’m terrible for making lots and lots of little tweaks to the text for the CF Talk copy.  Often, the copy we receive is too long for the format and needs to be cut down, but I’m always anxious that while I may be cutting and re-jigging the article, I am never rewriting it.  Because the whole idea of the magazine is that it is written by pwcf for pwcf, it’s really important to me to keep the original author’s voice on their work, and not edit it into one homogenous style throughout the mag.

What this means is that while I’m editing, I’m constantly making changes and adjustments to the articles to make sure I’m keeping the thrust of what’s been written, as well as the original voice, whilst shaping it into an article that will fit within the space constraints imposed by our format and style.

It’s not easy and it’s one of the jobs that I always find myself trying to delay.  This time it’s been even tougher as I had a long spell out of the editor’s chair going through my recent rough patch, which meant that I had to come back to look at all the articles again, having completely lost the flow I was in before I had to down tools and sort myself out.

Happily, though (and I do enjoy seeing that word twice in the same blog entry), I have now managed to sign off on over 3/4 of the copy for the new issue and turn it over to the guys at Tin Racer.  All I have left to do is all the little mop-up pieces which come last, like the Editorial for the issue, the contents page and the competition page.

It’s been a long time coming, but hopefully we’ll carry a bit of momentum into the next issue and get it out quite quickly this time round.

Obviously, I’m looking at taking a long weekend off all work-related bits and pieces this weekend to make the most of my 25th Birthday, for which I have so far studiously avoided planning anything.  It’s a little sad, I have to say, to not be able to celebrate things properly, but I’m actually so glad to be here to see it and to be able to share it with all my family and friends, whether I get to see them or not, that it’s not got me down as much as one might expect it to.

I’ll be sure to chart progress of the other work I do manage to achieve this week on here once I’ve got there, but I’ll hold back from jumping the gun and shouting about my plans for the week for now.  I’ve learned my lesson.

Believe me, it’s amazing myself as much as anything, but so far this week, I’ve exceeded my target of 6 pages a day three days in a row – how brilliant is that?

I’ve no idea where this sudden glut of motivation or inspiration has come from, but suddenly things seem to have developed their own sense of momentum and I’m rolling along at a cracking pace and really enjoying myself, too.

It’s not just my new script that’s coming on leaps and bounds.

Live Life Then Give Life is still going strong, expanding all the time and the team behind it has grown and solidified into a (hard)core of people dedicated to improving organ donation in this country.  It’s a privilege to be involved with such a great campaign and group of people, who all work incredibly hard and really spur each other on to greater and greater things.

National Transplant Week, set up and run by Transplants in Mind (TiM) is in July and we’re all working feverishly to see what ways we can come up with to publicise it and raise as much awareness as we can.

There’s also the new issure of CF Talk which is coming together really nicely and now sits with the designers, who are currently working their very particular brand of magic on it.  I love the work our designers do on the mag and this is always the most exciting stage of an issue for me, where I hand them the copy and they come back a week or so later with some cracking imagery.

What’s always really funny about the whole process is that they are fantastically open to comments and ideas on all of the stuff they do, but there’s so rarely anything I want to change with the stuff they come up with it almost always goes to print identically to the first draft version I get sent through.  I suppose it’s a perfect illustration of a team working in harmony together to get all the elements looking their best.

I weary at the moment that it is almost always when things are rolling along at their best that the trip-ups tend to come.  But at the same time, knowing the up-and-down nature of my health at the moment, it seems all the more reason to enjoy doing all of these things while I can without fretting about the “what ifs” or the “what’s coming next”.

I suppose it’s something akin to parents trying to wrap their children in cotton wool. If you never allow your child to go out in the garden and play in the mud and put themselves at risk of germs and all the things children come into contact with then they may very well not get ill and stay more healthy than other children, but they also lose a large chunk of what it is to be a child – to explore the world and find out first hand that mud is mucky and worms don’t taste very nice.

And so it is for me at the moment.  I could easily shut myself away in my bedroom and rest 24/7, spending my days eating, sleeping and doing treatments.  But I don’t want to look back at this time pre-transplant when I’ve finally had my op and think of all the things I missed out on because I was too worried about what would happen next.

If a downturn is coming, then so be it – I’ll take it on the chin and ride it out like all the others.  I hope I can stave it off and continue to enjoy the good side of life.  But whatever happens, it’s not going to stop me doing the things that mean something to me.