Sunday may have been a great day, but I’m certainly paying for it now.  Three days on and I’m still shattered and my chest is tremendously upset about something, though quite what it’s problem is I don’t know.

I feel tight, I feel tired and I feel pretty unhappily breathless, too – a great combination for poor K as she has to put up with a very grumpy Oli (for a third day in a row, too!).

I don’t know if it’s all Sunday-related or if part of it is the curse of the project-mention in the blog, but something is conspiring to give me a really rough ride this week and I don’t like it.

I was supposed to go to Oxford today for an exercise sesh with the physio, but there is no way my body is going to put up with 2 1/2 hours in a car and half-an-hour’s worth of treadmills and step-ups.

As if to rub the proverbial salt in, I’ve also not been sleeping at night now, either, which just makes the day-times seem worse.   It’s all one-thing-on-top-of-another and I know it’ll sort itself out soon enough if I just keep resting up and keep my calorie count high, but it’s a real b*stard to go through right now.

I suppose the lows are always harder to deal with off the back of big highs, too, since you’ve had that much further to fall, but I’m doing my damnedest not to let it get me down.  The trouble is, I just don’t have the energy to be up.

It’s a funny thing, that.  Being “down” takes no energy at all – it’s almost like a default position, whereas being “up” requires an investment of energy, even if it’s just a small amount.  I think that’s skewed, someone should write and complain.

Still, there’s nothing better than writing a post on SmileThroughIt to remind me that I’m supposed to be SmilingThroughIt, so I’m off to search YouTube for videos of stupid people falling off logs and bumping their face.

I know that, technically, the tense of the title is wrong, since it was yesterday and not next week, but it was such a fantastic pun which came to me in my half-dead stupor in bed last night that I just couldn’t let it go, grammatically-challenged although it may be.

Anyway, to the point – I had the most amazing day yesterday, flying down to Ipswich to see my Godfather and his family. Yes – flying. To Ipswich. The only thing more remarkable than taking a helicopter down to visit friends and family in Ipswich is that someone who can afford to own a helicopter and fly his friends and family around would choose to live in Ipswich.

I love flying – I’ve done it a few times at school when I was a cadet in the RAF. The only reason I signed up, in fact, was that I heard you got to go for a buzz in a Bulldog – which, for those of you out of the loop on these things, is flying in a type of small, 2-man aeroplane, not unnaturally interfering with a canine.

Helicopters are so much more fun than planes, though, since they are infinitely more manoeuverable than their winged cousins. The float serenely up into the sky – well, as serenely as you can with two engines and four blades shuddering around above your head – and whisk you much quicker than you’d imagine to wherever you want to go.

My Godfather lives in the middle of Nowhere-outside-Ipswich, which is a very quaint little village which does, in fact, have a proper name, but navigation is much easier when you just fly straight into his garden. Road names are rather arbitrary.

They have recently been redoing their house – and by “redo” I mean gut and rebuild, basically – and I could go into immense detail about the 6 bedrooms, 5 en suite, chill-out room, grand staircases, floor-to-ceiling mirrors, televisions behind pictures on the wall and double-pool spa-complex with gym hidden behind a wall of mirrors at one end, but actually I think all you need to know to create a picture in your mind is the fact that you can land a helicopter in his back yard.

There are 2 things you notice about the East of England when you fly over it from anything ranging between 500 and 1,200 feet (we yo-yo’d a little bit, for fun and frolics): 1) East Anglia and Suffolk in particular, is incredibly flat and boring to look at, endless miles of monotonous fields and the odd semi-major road and 2) there are more stately homes or Very Big Houses than you can shake a big stick at. Mind you, your chances of finding anything as interest as a big stick in the landscape of Suffolk is close to zero.

Monotony aside, it’s a wonderful experience flying over everyone’s heads, seeing your shadow chasing across the fields below, spotting the rich areas by counting the number of swimming pools and tennis courts per x number of houses. Helicopter is way to travel. Even a comparatively boring 40 minute ride like ours was about 100 times more interesting than spending 40 minutes on the M1.

I could fly all day – even over Suffolk. I do it a disservice by knocking its dull flatness, because anything is fascinating from the air – watching the roads wind around the countryside, spotting the big houses, fields being ploughed, small country airstrips (of which there are far, far more than you would imagine).

Although we weren’t quite high enough to see things properly, there were times when you could even make out an interesting lie of land that would appear to indicate the presence of an old fort or similar – like being in a live episode of Time Team.

All of which is a very long-winded way of telling you that we spent the day with my Godfather and his family in Ipswich, which I completely and dearly loved every minute of. The fact is, without the convenience of flying pretty much door-to-door (we did have to drive 15 minutes to an airfield at our end), I’d never have been able to go.

It was a really, really wonderful day and it left me completely drained and shattered. Today’s been spent almost entirely in bed and tomorrow will probably largely be, too, but it was totally worth it. I’ve not spent time with them for absolutely ages and K’s never met my Godfather before, although she had met his wife, who’s one of the world’s greatest people when her scathing eye is trained on someone other than me. Luckily yesterday, her husband was around to deflect most of the attention, and I had K there so I didn’t have to endure the “when are you going to find yourself a decent woman” conversation, either.

In fact all she had to complain about was my lack of visits recently, which I assured her I’d make up post-transplant by using her house as my rehab centre. For one thing, it’s got a better-equipped gym than any NHS hospital and a good deal of private city-gyms too, I suspect.

It was great to get away for a bit and catch up with people I love to pieces and see far too infrequently. And to have the luxury of flying there and back, well, that just takes the biscuit.

Ooooh, photos!!

WAY too hot for training today, so why on earth did it turn out to be the first session I’ve done since… Tuesday, I think? Maybe it’s guilt.

Anyway, got through 8 mins of steps and then did half my strengthening – 3×8 curls and 3×8 shoulder raises. I think doing all of the strengthening in one go with the step-ups is too much – I noticed a distinct lack of energy the next day, which I’m taking to be residual tiredness – so I’ve decided to separate them into upper- and lower-body exercises and do them on alternate days.

SIDE NOTE: Weight is now up to 52.4kg – I think this is the heaviest I’ve ever been, or at least close to it.  Hope it keeps going on.

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…

I have an unnatural love of Aaron Sorkin.  It’s really not very becoming for a man of my age.  I have a kind of giggly school-girl relationship with everything and anything he does.  Oddly, though, not many people actually know who he is.

Most people have never heard of him and fewer seem to have seen his TV shows.  The only thing most people know him for is A Few Good Men, the Tom Cruise/Demi Moore/Jack Nicholson movie, and even then most people only know it when they hear Nicholson bellowing, “You want the truth? YOU CAN’T HANDLE THE TRUTH!”

He wrote that.

He went on to create and write the immensely under-rated Sports Night, which ran for 2 seasons and 40-odd episodes in the States a decade or so ago, starring some proper actors who went on to big things in Six Feet Under and Desperate Housewives, but never really took off.  It got buried in the schedules on ABC1 over here a couple of years back, but I don’t think anyone noticed it.

After that he hit the big time (at least in the States) with the unbelievably brilliant West Wing, probably my all-time favourite TV show and multi-Emmy award winner.  Sadly, English audiences never really took to it and after the first series was broadcast to critical acclaim but rubbish ratings on Channel 4 it got shifted and bumped around the schedules on E4, More4, Another4, Someone Else’s4 and other such channels.

It was, however, consistently the best thing coming out of the States for 3 seasons, dropped a little in the 4th just before Sorkin left.  It carried on for another 3 seasons and was cancelled last year, ironically after its best season since Sorkin left.

So what did he do next?  The master wordsmith, the writer I most admire, the man, the myth, the legend went and created Studio 60 On The Sunset Strip – a behind-the-scenes comedy-drama about working on a weekly live sketch comedy show for a fictional US Network.

It’s inspired, sublime and completely riveting – I love the whole thing to pieces, even before you add in to the mix Matthew Perry (ex of Friends) in a role that let’s him loose with his very real talent, and two of the West Wing’s best regulars in Bradley Whitford and Timothy Busfield.

The only problem with watching the series unfold week-by-week on More4 as it is at the moment is the horrible knowledge that comes from following TV production in the United States.  You see, Studio 60 is SO good that the network (the real one, not the fictional one) pulled it after one 20-episode series.

Bummer.

Which leaves the tantalizing question of what it did wrong to get cancelled.  All shows have their bad weeks, especially when you’re working in the American system where they write the shows as they go (as opposed to the UK where all but the longest series like Dr Who or Robin Hood go into production with all of the scripts in almost final form), but Studio 60 has so far, in 5 episodes, hardly hit a bum note.

Did the American audience just not go for the show?  Did they just not carry on watching?  Or does it suddenly, mid-season, get completely rubbish.

I’m a Sorkin addict – I’ll watch anything he does because I think he’s one of the most talented writers on the planet.  And I know I’ll keep watching this to the bitter end (and you know already that the ending’s going to be bitter), but it’s kind of turning into car-crash TV, to be watched with your fingers over your eyes from behind the sofa.  Because you have to imagine that for a show this good at the start to get canceled after a single series, something BIG has got to go wrong with the quality of the output somewhere in the middle.

Ah well, you can’t win ’em all.  And even if it does get rubbish, I’ve got 115 hours of The West Wing on my DVD shelf to give me my Sorkin-fix.

Strangely for someone with the aerobic capacity of a small field mouse, I find reading sports books particularly fascinating and inspiring.

I don’t know if it’s the thought of hopefully one day being able to push myself physically in the ways I read of others doing, or if it’s precisely because I have no idea what it feels like to push you body to its limits in those ways.

One of my favourite books is Matthew Pinsent’s Lifetime in a Race, which is not only really well written and engaging but also brilliantly descriptive of the punishment Olympic sportsmen and women put their bodies through.  Similarly, I enjoyed Paula Radcliffe’s book and others too.

Recently, as you may have read here, I picked up Lance Armstrong’s book It’s Not About the Bike, the story of his struggle with cancer and eventual comeback and first ever Tour de France victory, a feat he would go on to repeat a further, record-breaking 6 times.  It’s a fabulous book, just as fascinating and inspiring as I’d heard it was.

What intrigued me about it was how interesting it was from the perspective of someone who knows nothing about and has no interest in cycling as a sport.  Despite numerous recommendations I had always sort of ignored the book before on the basis that, not being a follower of the sport, the book wouldn’t interest me.  It turns out to be much more than a cycling book, though, and it tells stories with a rare perspective and wonderful fighting spirit that I think many people with critical illnesses often share.

More than that, though, it actually got me interested in cycling.  So much so that in the spirit of trying to find more books to inspire me on my mini-quest for mini-fitness I picked up a copy of a book called Inside the Postal Bus by a guy called Michael Barry.

There were a few reasons I chose this out of all the books lining the sports section of Borders when I was browsing.  The main one, though, was the promise from the blurb of the book to get an insight into how a cycling team operates within the Tour de France itself – how the other riders in a team work to support the lead rider in his bid to victory.

The book covers the 2004 racing season from Barry’s perspective as a rider on the same team as Lance Armstrong – the US Postal Racing Team, named for their sponsors, the US Postal Service – riding in the races with him and on their “tour bus” between events and stages, the titular Postal Bus.

The blurb itself proclaims: “Journey across Europe with US Postal – from the first workouts in the winter to the intense intra-squad competition to make the Tour de France team selection.”  It tells us Barry had “The hardest job in sports: riding for Lance Armstrong in pursuit of a Tour de France victory.”

What a brilliant idea for a book I thought – cycling from the perspective of a regular athlete, rather than from the point of view of something of a super-human success story.  I was really interested to find out what it was like for a semi-mortal – and the rest of a winning team – to go through the rigours of such a massive event.

There is, however, one big flaw in the book, which I’ve just uncovered.

Ignoring the fact that the “intense intra-squad competition” promised in the blurb actually amounts to about 3 paragraphs telling us that since there are 20 riders in the squad, not all of them will make the 9-man Tour team – a pretty big fact to ignore, I know, but wait for it – and getting past the fact that it is actually quite sketchily written, with paragraphs that jump all over the place and often fail to hold a cohesive thread of thought (not something I can really complain about given the nature of my ramblings on here), there is one pretty major, single issue that stands out above all the rest.

Michael Barry didn’t ride in the 2004 Tour de France.

He wasn’t injured, he didn’t crash, he wasn’t taken ill.  He didn’t make the team.

The publishers – in their infinite wisdom – commissioned a book (in 2005, no less), one third of which concerns the 2004 Tour de France and Lance Armstrong’s record-breaking 6th victory, from a rider who spent the 3 weeks of the Tour watching it from his home in Spain in his boxer shorts.

He even say it himself – he watched in his underwear, on the telly.

Just how much insight did they expect him to be able to give to the goings on in the tour party?  Honestly, it’s not hard.  I know nothing about cycling save for what I’ve read in Lance’s two books and the first third of this one, but I could tell you just as much about the 2004 Tour if you gave me the broadcast tapes and let me catch up.

His analysis of the race as it unfolds amounts to, “They looked really tired after that stage, which was really long.  I think that the long stage made them really tired.  Actually, I spoke to one of them and they said they were all really tired because the stage had been really long.”

The mind boggles.

So, if you want to read an interesting book about cycling, buy It’s Not About the Bike or Every Second Counts – not only inspirational, but interesting too.  If you want to stop in your tracks halfway through a book and stare at the wall thinking, “What the….?”, go for Inside the Postal Bus, by Michael Barry.  Who wasn’t.

Another 8 mins of step-ups (on 4l/min o2) , plus my [almost] full strengthening program (on regular 2l/min o2). To witt:

3x 8 quad lifts
3x 8 bicep curls
3x 8 wrist flexes
3x 8 shoulder shrugs
3x 8 front hip lifts
2x 8 side hips raises (should have been 3)
2x 8 rear hip lifts (ditto)
3x 8 arm raises
3x 8 sit-to-stand

Much easier than yesterday, which I think may be in large part due to doing them in the afternoon after my DNase neb and physio session, which is always a better physio session than the morning one – probably largely due to the DNase beforehand.

Feel tired out but good, not exhausted.  Yet.

Just as a keep-you-updated, keep-myself-in-check type thing, I figured I’d start charting my daily progress (if it’s going to be daily…).

Today’s “workout” was really hard, much harder than it has been previously.  Don’t know if it was time of day (late morning) or not as good a physio session before hand or what, but it was a lot more of a struggle.

Still, I did 8 minutes of step-ups on 4l/min of O2, in reps of 1 minute steps with 30 secs rest in between.  I completed 4 reps (4 mins stepping with 3 30sec breaks) and had to make the 4th break 1 min rather than 30 secs, followed by another 4 reps with regular breaks.

I had Rocky on in the background, but it didn’t help.

For future reference: Step-ups: 1 rep (or 1 min) = 1 min steps + 30 secs rest.

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.

After almost a full 24 hours tucked away in bed sleeping off the after-effects of our 3am bedtime from Tuesday, I was back up to Oxford today to finish off my IV’s and see how the exercise program appears to be working.

First of all, though, I had the morning to spend with one of my best friends who I’ve not seen for an age, who came around with her shears to attack my unruly barnet, which she did with considerable gusto, even tipping a small vat of bleach onto my head for 45 minutes.

To be honest I’m not entirely sure I like the result, but the thing with Lea’s haircuts is that in all the time she’s been doing my hair (which is about 6 years and counting now), I’ve never actually liked the cut or colour for the first 24 hours. I think it’s because it’s nearly always pretty drastic, so I’m not used to the sight that greets me in the mirror. But without fail a couple of days after I’ve had it done, I always LOVE it. I’m odd like that, but there you go.

We’ve kind of got used to each other now – she’ll finish and stand back excited and happy, cooing and purring over her handiwork and I’ll stare at myself in the mirror and um and aahhh over it for a while and generally be unenthusiastic. Then in a couple of days’ time I’ll do my hair in the morning and be straight on the phone to her to tell her how much I love it. Legend, she is.

What’s more, she’s one of those fantastic friends who you can go for months without seeing but pick up from exactly where you left off as soon as you’re back together again. We had such a great time this morning, it really helped lift any of the remaining fug from Tuesday night.

Oxford was good again. With the steroids being tailed off – reduced by a third in the last week, and with a noticeable energy reduction – I was expecting to see a pretty big difference in the workout session with Lou the physio today. So I was pleasantly surprised again (and pleasantly surprised to be pleasantly surprised again) to get through an 8-minute step-up workout with her and see my sats stay in the optimal/safe 90% range during exercise and rising back to 93/94% at rest afterwards.

The next couple of weeks is going to be the real test of the plan’s long-term prospects as I drop the IV’s and begin to slowly ween myself off of the steroids. If I can keep my appetite up and give myself enough fuel to run through the programs I’ve got, then potentially I can keep my chest feeling stronger and clearer for longer and avoid the usual post-IV dip.

The motivation is still there, even if the energy levels are more variable. It’s just a case of trying to find the right moment in each day to get the most out of my chest without leaving me exhausted for the rest of the day. It’s another of those slow learning processes, but at least it’s got very positive benefits to aim for and a real sense of achievement to top it off if it works.

The end-of-IV checks included looking at my lung function which has stayed at a fairly stable 0.8/1.4, which is good if unremarkable. Mind you, I’ve not been over 0.8 for more than a year now, I think, so it’s probably safe to say that’s pretty much my ceiling now, so as long as I’m staying there and not dropping, we know things are going OK.

Although the exercise program is unlikely to improve my base lung function, the hope is that it will help out with the oxygen flow round my body and help reduce the breathlessness. We’ll have to wait and see if the theory holds true, but for now, it’s time to plough onwards.

PS – thank you all for your wonderful comments and messages of support over the last couple of days, they really do make a massive difference in picking myself up and keeping on. And K wanted me to add big thanks to everyone for her birthday wishes to! So you all rock, muchly! xx