Archives: Friends

Sunday I’ll fly away…

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!!

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A week in revue

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…

Mañana Mañana

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.

Still going…

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

The big, shiney, happy birthday blog

Tonight I am a tired boy, but it’s OK to be tired because all of my energy has been expended on being wonderful and making sure my beautiful, doting, life-enhancing and gorgeous other half enjoyed the most fabulous, spoil-some birthday in the history of ever.

I even got up 30 minutes early this morning – that’s a whole half of an hour, that is.

Imagine, rising from bed in tip-toe quiet fashion so as to leave the birthday girl to her beauty sleep, nipping out to the Tesco on the corner to pick up some nice, fresh croissant and fruit juice, sneaking back in and setting out all the breakfast and presents and celebrations to look lovely for when she wakes.  And all before my morning IV’s, too.

Of course, it doesn’t always work as seamlessly as planned.  Tip-toeing out of bed is all well and good, but it’s hard to muffle the enormous, alarming “BUZZZZZZZZZZ” of the oxygen concentrator as it kicks to a start in the morning.  I’ve heard teenagers make less noise when parents have tried to rouse them from their slumber during school holidays.

Still, the advantage of the concentrator in the bedroom is that while the alarm may be startling, once it’s on and running the mid-level hum it generates masks out most of the noises created by banging around preparing breakfast spreads and makes sneaking out of the house a whole load easier.

Of course the easiest way to win someone’s affection on a birthday is to buy them presents, so this was something I took care of some time ago and in copious quantities.  I say some time ago, but being a boy what I mean is ordering them on the ‘net last week.  I don’t want to give you some illusion of forward-planning anywhere akin to the levels K works at, where she has already started assembling gifts for Christmas and people’s New Year birthdays.  Forward planning in my world consists of remembering that there’s a day you need to remember at some point this week.  This month if you’re lucky.

Still, said assembly of presents appears to have been appreciated and it was brilliant to be able not only to entertain my Mum and Dad for a mid-afternoon visit (yet more presents – including ice creams for everyone: they can come again!) but also to make the self-powered trip over to K’s parents’ for a little birthday tea party with most of her nieces and nephews.

As delighted as I have been over the last week to be enjoying something of a return to previous heights, there’s nothing that quite reinforces the value of having at least some state of health than being able to do things without having to second-guess yourself or your body.

A couple of weeks ago I wouldn’t have even deigned to consider seeing both sets of parents in one day, let alone driving us all the way to K’s ‘rents.  To be able to do it all today and to make the day so special for her is a one-in-a-million feeling and it really rams home the importance of making the most of the good days when they come along.

But enough of me – today has all been about K and making her the happiest girl she can be.  I’m fairly confident we’ve managed to achieve it between me, our families and our ever-generous and wonderful friends.

K really is the other half of me – she’s the light to my dark and the sweet to my sour, but I know that I’m just as much to her.  Everything we share we share together (which is meant in a much less, “well, duh,” way than it came out…) and everything we go through we go through together.  Neither of us will ever know the physical struggle the other faces, or feel each other’s pain, but we will always know that wherever we go and whatever we do, we have someone with us no matter what.

Happy birthday, gorgeous, don’t ever stop those happy feet.

Step forward fitter me

I’m off to a flying start.  Well, I suppose it’s more of a stepping start, really, but isn’t there an old Chinese saying, “Every great journey begins with a single step?” and I did, like, at least 30 and a half steps today, so I must be really well started on my great journey, even if I do have to go back and start again because I forgot my GPS and SatNav.

I woke up this morning with both my thighs telling me in great detail how they’d been brought rather rudely out of retirement yesterday without any prior warning.  I suggested back to them that they might want to get used to it because there was a lot more where that came from and oddly enough they just laughed at me.  Even my legs don’t have any faith in me.

I didn’t let it deter me, though.  I resolutely soldiered on with my day – I did my morning IV’s, I ate my breakfast, I sat on the sofa and read a little and I sat at the computer and surfed a little.  Extremely strenuous, clearly.  I also slipped back to bed to read for a bit and then do some physio and then I had some lunch.  They were still moaning, mind.

In fact, I think my quads had only just stopped giggling and been lulled into a nicely false sense of security when I took the bull by the horns (yep, the same one as yesterday) and marched to the bedroom to pull out my little yellow step from under the bed.

I think I may have to work on the phrasing around my exercise equipment, or come up with a cunning euphemism for it because, let’s face it, “little yellow step” is a bit pathetic isn’t it?  Maybe I’ll Christen it Goliath.

So I dragged Goliath from under the bed and I set myself up in the door frame to the living room – facing a bemused K sat at her desk “working” while trying to keep a straight face, clearly – and set off into my routine of step-ups.

10 and a bit minutes later I’d completed my prescribed 6 minutes, with 30 second breaks between rounds, and was feeling it, too, but happily hadn’t keeled over or gone dizzy.  I quickly knocked back a glass of milk (fluid replacement AND calorie booster rolled into one, easy, cow-born package) and hoped that foot and mouth isn’t a problem in pasteurized produce.

Goliath was kicked (sorry, hauled) to one side to wait for his return tomorrow and I sat, slightly sweaty, on the sofa with a smug look on my face with K muttering approval from behind her lap-top in the vaguely-guilty-sounding voice of someone who knows they ought to be doing something similar, too.   (Exercise-wise, that is, not sitting smugly on the sofa.)

Hurrah! then, one day down and I can feel the habit forming already.  Well, kind of.  OK, maybe it’s not the habit I feel so much as a vaguely uncomfortable stretching of the quads, but I still did it – and did it unprompted, too.

I’m actually now so scared of people with large sticks (see comments on previous post) that I think I’ve got motivation enough to last me till winter.

Dropped

So how many phone calls/emails/texts have I received today to tell me I’m not actually in the Mirror?  OK, actually only about 5, but that’s not the point.

You work feverishly to have such a rubbish quality of life that it merits the attention of a national newspaper, manage to persuade your nearest and dearest that they should be happy to pose for a picture for millions of people to see when they normally balk at a family snap, tell the whole world (possible exaggeration) that you’re going to be in the paper and then it turns out you’re not.

Feeling foolish?  I certainly am.

Honestly, they really did call me to tell me I was going to be in it today.  I won’t say they promised, because that would be a lie and also, let’s face it, who expects tabloid papers to keep their promises nowadays?

Still, they are a very friendly bunch (the two of them I’ve actually spoken to, and the lovely photographer who came round), so I’ll not hold it against them and I’m sure it’ll go into an issue soon.  The trouble being, of course, that by the time I know it’s in that day’s paper, it’ll be too late to let most people know.  You win some and other get away from you, I guess. (there must be a more pithy way to say that…)

I’ve spent today almost entirely in bed again, still catching up from the whirlwind of Tuesday, but still grateful for the chance to do what I did and very much glad I didn’t opt-out – thanks Mum!

Although there’s no official statistics yet for the number of people signing up to the organ donor register recently, I’ve been reliably informed through a source that there was a huge boost in numbers attempting to sign up through the organ donor website and the telephone line.

Once official figures are confirmed, I’ll be sure to pass them on here, but on initial inspection it looks like through National Transplant Week and the hubbub of Prof D’s announcement earlier in the week has really driven home the message of organ donation and its importance.

This is no time for complacency, though, and we must continue to encourage as many people as we can to sign up to the register.  The Opt-Out system, even if it does get through Parliament (which it failed to do just three years ago), more than likely won’t be in place for at least another couple of years.  Without more people signing on to the organ donor register, people like me, Robyn, Jen and thousands of others face losing their lives for the want of a donor.

Although the press spent a lot of time and energy focusing on the Opt-Out portion of Prof D’s report, the full text reveals a true grasp of the infrastructure, education and training needs of the transplant system if it is to improve, not just the need to find more donors.  You can read his full report here, Chapter 4 being the transplant section.

It’s encouraging to see that all the necessary issues have been flagged up and that hopefully they will receive the attention they urgently require.  As the system improves, so, hopefully, will donor rates and less people will die needlessly waiting for their second chance.

I’ll leave you with the most pertinent section of the report, from our current position.  If you haven’t signed the register, take two minutes and do it here now.  If you have signed the register, why not use the two minutes to send an email to someone who may not have and encourage them not to wait for Opt-Out, but to use their autonomy and Opt-In.

“Increasing participation in the NHS Organ Donor Register is critical to improving the current poor position.Targeted campaigns, including options at the time of issuing of drivers’ licences, at general practice registration and in the commercial sector, such as via the Boots Advantage Card application, have led to an increase of people on the NHS Organ Donor Register. Such ways of increasing sign-up should continue to be devised and applied.”

Thick and fast

The funny thing about not doing very much is that when things do happen in your day, it makes them seem like a much bigger deal than perhaps they would seem on another day.

On the other hand, the ups and downs are coming in so thick and fast at the moment that I don’t really know what to do with myself at some points. Most weeks seem to end with an interesting good news/bad news summary for the week, although I try not to dwell on that too much lest the knowledge that the week contained more of the latter than the former start to drag me down again.

Then you get days like today, when the good news/bad news cycle suddenly notches up a gear and starts flying along quicker than a steroid-powered rider in the Tour de France.

I woke up this morning just before 9am, a good average morning wake up time, feeling pretty good. After doing my nebs and physio, I’d noticeably slowed down a good chunk and was feeling a distinct lack of energy. Immediately, my head starts to worry about how much of a struggle today is going to be.

Luckily for me, I didn’t have that much time to dwell on my thoughts because for three quarters of an hour between 11am and 11.45am, the phone didn’t stop ringing. If you want a clearer demonstration of a good news/bad news day, you’ll have to search long and hard. Although it was really bad news/good news. The phone calls went as follows:

– Lisa, my nurse from the Churchill in Oxford calls and tells me that the result from my Glucose Tolerance test in my annual review was high, a possible indicator of the beginning of CF-related diabetes (CFRD), more on which later, but suffice to say it didn’t put a smile on my face. She’s going to try to find me a blood sugar testing kit for me to monitor my sugars for a couple of weeks before my next clinic visit on 2nd August to see what’s going on.

– Mum phones. Tell her why I’m not sounding over-joyed. She tells me not to worry about the GTT. Immediately, it makes me worry. Mum only tells you not to worry when there’s something to worry about (or at least only says it in that tone of voice where she doesn’t sound entirely convinced there’s nothing to worry about). Tells me my Grandpa is up for the weekend if I want to come over and I’m left to ponder if I’ll have the energy to make a trip to Mum and Dad’s to see him.

– Emma calls to tell me that the Daily Mirror want to run a feature on me and Robyn, who is also currently waiting for a double lung transplant and also has CF, and is currently the face of National Transplant Week. She asks if I’d be interested. I know it’s not really a question because she knows how much of a media monkey I am. She has to check with Robyn, too, but will get back to me.

– Emma calls again, Robyn’s on board, so she gives me the writer’s details.

– I phone the Daily Mirror writer and talk to her a bit about donation and things. The spread will form part of their One in a Million campaign, through which they’re aiming to sign up a million potential organ donors. We arrange a proper telephone interview for Monday morning and I pass her Robyn’s details.

– K phones from work after I text her about the Mirror piece. She’s excited (she tends to be more excited than me about pretty much everything, for which she thinks I’m rubbish) but can’t talk for long, so I don’t tell her about the GTT results.

The thing is, I don’t really know what to feel about the possibility of CFRD. What confuses me is that the perception of people being diagnosed with diabetes is that a massive blow and in some ways the end of life as they know it. Just think how many “Oh God, I’ve got diabetes” stories you see in medical dramas and other TV shows. Just this week, K and I watched an episode of Brothers and Sisters, the new Channel 4 show, in which the family’s life crumbles around a daughter’s diabetes diagnosis.

But at the same time, I know plenty of people – many of my friends – who have diabetes and CFRD and it makes no apparent difference to their lives. There are countless stories of people doing all sorts of things through diabetes – take Steve Redgrave, who won an Olympic medal while dealing with it.

So it seems like it shouldn’t be that big a deal, but at the same time I think my mind has been programmed into thinking it’s a nightmare.

I certainly don’t relish the thought of yet more drugs and treatments and things to think about during the day, but as Lisa said on the phone today, it may explain why recovery times seem to be longer at the moment. Perhaps getting my blood sugars under control – if indeed they are out of control, which we still don’t know for sure – will open the door to a more full-on recovery and bring back other little aspects of life I’d given up on for the time being, like popping out to the shops.

I suppose the biggest problem with having not very much to do all day is that it gives you a lot of time to dwell – to think on things for far too long, when in an otherwise active life, you’d have busied yourself with something that takes your mind off it. When you feel so short of energy that you can’t engage with anything, your mind is free to take itself off to all sorts of places you’d rather it didn’t go.

So I’m deciding for myself tonight that I will go to bed not focusing on the “maybes” of dubious GTT results, and instead relish the the thought of FINALLY getting to maych Emily by hitting the National Press. OK, I’m a long way behind her in media stardom for now, but I’ve got much more in my tank yet. Just you watch…

Brum

So it turned out that my chest decided not to try any last minute histrionics and I did make it up to Birmingham today.

I’m sure there will be much amusing cross-bloggage between myself, Emily and Emma on the subject, but since I appear to have got here first, I’ll be popping my smug face on. Or possibly reflecting on the fact that they clearly have better things to do with their Saturday nights than sit in front of their computer detailing their day. Ho hum.

Today saw the beginning of National Transplant Week, which runs until next Saturday, and to mark the occasion the Live Life Then Give Life team assembled in Victoria Square in Birmingham to create the world’s biggest Loveheart (you know, those little hard sweets with “Date me” or “Sexy” written in the middle).

The idea was to create a 1 metre wide version, which, when finally calculated, required a massive 70kg of icing, which all had to be rolled out, dyed, plastered together in a neat round shape, then have the heart-shape and letters spelling out the organ donation line phone number placed on top.

Due to the hugely limited reserves of energy I have now, however, most of the fun of the day was off-limits to me, with my arrival timed to coincide with the completion of the finished loveheart around 3pm, when we hoped to have some press along to mark the occasion.

Mum and Dad drove over and collected K and me just after 1pm and we headed up the M1 to Birmingham in really good time, car loaded down with my newly acquired wheelchair, plenty of spare oxygen, a snack-box of energy-boosters and spare bits and pieces like paracetamol, which I’ve found immensely useful in recent weeks for calming hyper-active chest flaring moments.

I have to confess that I was pretty nervous going out of the house today. Things can change so rapidly from moment to moment with my chest at the moment that the prospect of traveling quite so far from the relative comfort and safety of home, where my bed and Neve are always to hand, concerned me. The prospect of getting into difficulties in a car on the motorway filled me with a kind of nervousness I’ve not experienced before and it really threw me off.

That said, it was a really wonderful afternoon – everyone there was so fun and friendly. I saw a few faces I’d met previously at Laughter for Life and met a few people who I’ve only had contact with via email and message boards up to now.

It was fantastic to be out in the open air and having some fun with people, compared to my usual life at the moment of sitting around at home doing hardly anything at all. The daily grind of nebs, physio, more nebs, resting, nebbing, physioing and on and on in a loop is brought into focus by a break from routine like today.

My chest behaved admirably. Once we got home it gave only the mildest of complaints, letting me know that it had done quite enough for the day, thank you very much, but not ranting and raving about it as it sometimes deems necessary.

I’ve been pretty spectacularly tired all evening, but have forced myself to stay awake so I get a good night’s sleep tonight, which I’m now assured of, so I’m going to whisk myself off to hit the hay and catch up on other things tomorrow.

Thanks to everyone who helped out today, and to everyone who popped down to say hello. We made an odd sight in the centre of Birmingham, standing over a giant sweet in various random states of hilarity and occasional fits of giggles, but we made contact with a lot of people and passed on the message of organ donation, which is what this week (and our campaign) is all about.

25’s up

With little fanfare, and no candles, I quietly passed into my 26th year yesterday.

Whether emailing all of your friends, posting a Myspace bulletin and blog piece count as “quiet” is perhaps a debate for another day, as I like to think it was peaceful and respectful.

My little idea of raising a hundred or so pounds for the Trust by asking for donations in place of gifts has blown me away ever so slightly. At last check, justgiving.com/oli25 was running at a massive £320, with pledges of more to come from a few corners.

It has truly over-whelmed me the number of people who have donated – especially people who I know wouldn’t have been buying me anything anyway. It means so much to me that they donated something anyway, I’ve been really touched by everyone’s response.

Thanks also to everyone who sent me birthday messages and good wishes.

I had a great day, being spoiled rotten by K all day long, with breakfast specially prepared fresh from the shop, all fresh and delicious, plus a spectacular act of rule-breaking in the most fantastic fashion including a furry orange book about the making of Avenue Q, the puppet musical I’ve become slightly obsessed with.

For the first time in a really long time, I’ve got new DVDs to add to my collection, including a few I’ve wanted to see for a really long time and a classic I really should have seen but have never got around to.

Birthdays are amazing things. They serve to remind you of all the joy you have in your life, all the people who mean something to you and to whom you mean something in return.

So many people complain so much about reaching another birthday – I guess fearful of the on-coming of old age. I don’t know where it comes from, other than an age-old, in-built fear of getting closer to losing something, whether it be your faculties or your life.

It’s always struck me, though, that people look at birthdays the wrong way. Perhaps it’s because I’ve been forced into a position where every passing year counts as a true blessing, but I don’t understand why people choose to fear their birthdays rather than embrace them.

Every year of our lives brings new adventures. It brings new experiences, new people, new wonders we know little of when we celebrate the passing of another 12 months. Every day that goes by we learn something new, we grow as a person and we extend our life beyond what it was the day before.

Surely that’s an amazing thing – so why don’t people see it and appreciate it for what it is? Is it that every year that passes we slip into more of a groove of comfort wherein everything blurs together into one homogenous experience? Do we learn over time an inability to distinguish the wood from the proverbial trees?

The saddest thing in life is when a person stops seeing the beauty that surrounds them and the experiences they are open to. Childhood is seen as the happiest time of our lives, because that’s when we take in the wonder of the world and see things for the first time – the time when we don’t think we’ve seen it all before and are eager to take it all in.

Adulthood shouldn’t be about getting bored of the same old things around us, it should be a time when we can use our years of experience and perspective to take hold of the things in life that really matter and put aside the thoughts of the things that don’t.

We should take each passing year as an opportunity to do the things we want to do, go the places we want to go, see the things we want to see, but more than anything, to not let the world blinker us to it’s beauty and ever-changing wonder simply because it’s become familiar to us.

Tomorrow morning, I want you to look out of your window when you draw back your curtains and really notice the things you can see outside it. If it’s dull and grey and there’s rain falling down, don’t let your heart sink, but turn your thoughts to the amazing way the falling water changes the way you see the street, the way the light falls differently. Take note of the things you see everyday, but look closer and find a detail you’ve not seen before.

And when you go downstairs and you greet your loved one(s), take a moment to appreciate what they bring to your life. Take a moment to think about what they’ve brought into your world that’s made you who you are. As Alfred Lord Tennyson once wrote,

“I am part of all that I have met.”