Monthly Archives: August 2007

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

I don’t have much to ramble on about this morning, I’m tired and I don’t think my brain is working properly.

I got another call from Harefield last night, around 6pm (the Tx-coordinator actually interrupted the end of Neighbours, the cheek!).  It took me a while to grasp what she was calling about as I’d phoned her earlier and thought she was returning my call, so I was merrily chattering away to her about this that and the other before she manage to slip into the conversation that she wanted me to go down.

It was a very different experience this time, although I can’t quite put my finger on why.  Feeling completely serene (at least for my part), we drove the back roads so as to avoid the rush-hour motorway traffic and got the the ward just before 8pm, where I slowly went through the battery of tests they perform to check your suitability.

For the first time on any of my calls, I saw one of the surgical team, a really nice German/Austrian doc who talked through everything with us in immense amounts of detail which managed to be both petrifying and completely reassuring.  Not quite sure how that works.

The combination of it being early evening rather than late night and the collection of tests and assessments being strung out over a longer period of time all seemed to help the time pass much quicker than on previous calls.

By 11pm I was showered, shaved and scrubbed in my gown, lying in the bed ready to go, waiting on word from the team.  Almost to the second around 11.15pm I started to feel the nerves kick in and then they somewhat ran away with me.   It’s a strange kind of fear that I felt, centred largely on not knowing what I was going to wake up to.

Strangely, I don’t have any fear of dying on the table, or post-op, nor do I particularly fear any of the rest of the process, but what bothers me is not knowing how it’s going to feel and what I’m going to see when I come round the other side.  Everyone reacts totally differently to the op, so it’s impossible to judge by anyone else’s experience how it’s going to be, which in turn means there’s nothing I can do to prepare.

As nervous as I was, though, I was confident in myself and my decision to go ahead with things, and still excited at the prospect of my new lease of life.

Unfortunately, the coordinator came in just after midnight and let us know it was a no-go.  They had apparently all had very long discussions about the suitability of the lungs, but in the end they’d had to err on the side of caution and decided it was just to dangerous to transplant them in their current state.  It was odd, though, as the coordinator seemed almost as gutted as we were – I think everyone there was convinced that this was our time.

I felt completely gutted, in a very literal, physical sense – it felt like I’d been hollowed out in my stomach and left gaping.  The three previous false alarms had been disappointing, but have never caused such a swelling of negative emotion in me.  The journey home was a long, tough one last night.

Of course much of an adverse reaction to things like last night comes through pure tiredness – lack of sleep does all sorts of odd things to your emotions and thought processes.  I know that things have to be 100% right for me to stand a decent chance of coming through things, so I know the docs are doing their best by me.  I know also that they are thinking of me and will get me up whenever they can.

I still feel tired and flat this morning, but I think it just needs 24 hours of bed rest and I’ll be back on all-cylinders again.  Apologies for typos in this, spell-checking is lower on my priority list than sitting doing nothing at the moment.

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.

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.

So I’m now mid-way through my course of IV’s (provided I’m only on for 2 weeks, which is always a big “if”) and I was back up to Oxford today for a check on how things are going, some mid-point bloods and an exercise session.

As I mentioned in my post about my annual review here, the docs think that if I can get myself doing some exercise and building some of the muscle mass I’ve lost over the last few months, I’ll stand a much better chance of keeping my lungs ticking over for a while longer than they may first have predicted.

Apart from the exercise (which I’ll come to in a bit), the most amazing thing to come out of today were my oxygen saturation levels – the amount of O2 that gets transferred into the blood stream to be carried around the oxygen.  I know I’ve been feeling brighter and fitter over the last few days, but nothing prepared me for the physio clipping the monitor to my finger this afternoon.

Normal sats levels run between 99-100% and back when I was off O2 and doing well a couple of years ago – and for a good while before then – I used to run fairly steadily about 96-97%.  Recently, even with my constant flow of 2 litres of oxygen per minute being shoved up my nose, I’ve usually topped out at 89%.  That’s pretty low.  OK , very low.

Imagine my surprise, then (I seem to say that a lot on here, so I guess all you guys who stay with me and continue to read this must have a pretty good imagination by now) when I perched on the bed on the ward today and saw my sats hit 94% at rest for the first time in well over 4 months.

I was totally gobsmacked.  I have to admit it was totally beyond my wildest dreams that I could or would recover the function that I’d lost, having convinced myself I’d waved  it goodbye for this set of billows.  Even my physio seemed a little startled by it, but she said she didn’t see why we couldn’t maintain or even improve them with the right exercise programme.

Obviously, it’s not exactly Olympic standard – I don’t even need any gym equipment, unless you count the beautiful, girly-pink dumbells they had me using for my bicep curls – but it’s something which gets my heart-rate going and will hopefully strengthen some of my core muscle groups and increase my general exercise tolerance.

The programme consists of a “cardio” set (in quotation marks as it’s not exactly pushing my maximum heart-rate) to build endurance and “weights” set (in quotation marks because all but one of the exercises actually uses body weight and nothing more) to strengthen my arms and legs, the areas which take the biggest hit during any period of inactivity.

The endurance set is a very simple 5-6 minutes of step-ups onto a low stair, broken up into 1 minute reps with 30 seconds recovery in between.  The aim is to increase the time by 30 seconds every couple of days until I reach a comfortable but taxing plateau, repeating the set every day.

The strengthening set consists of several different extension exercises, including leg-lifts, quad stretches, hip movement and arm/shoulder lifts. The idea is to do 3 sets of 8-10 reps of each of the exercises three times a week – so Monday, Wednesday and Friday, I should think.

I’m actually really psyched about being presented with something that I can do to help myself.  For so long now I’ve felt like a passenger on this ride.  I know that doing nebs and physio everyday is a big part of fighting off the avalanche of attackers busying themselves in my chest, but this finally feels like I have a chance to do something to take the bull by the horns and drag myself back up the slope.  (And on the way up I’ll find some more weird metaphors to mix, too).

It remains to be seen just how good I am at staying motivated when things get tough and I’m tired, aching and stressed out, but everything has to start somewhere, so it might as well be on a high.  If I can just help to turn this into a habit, then maybe it’ll become as second nature to me as nebs and physio are at the moment.

Needless to say, I’ll be doing my best to use the blog as an exercise diary, so I can be applauded or chided as necessary to spur me on.

(PS – for the record, my lung function mid-IV’s is at 0.8/1.5 which is actually better than it was at the END of my previous set of IV’s)

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…

You know, living from day to day gives a weird perspective on life. I’ve said it before and doubtless I’ll have plenty of opportunity to say it again in the future, but this bumpy road called life certainly throws up a few of those Yank-loved curveballs.

Today, I’ve done hardly anything more than I have done for the last three weeks – I took K to work (possible on a good day, not an exceptional event), I worked on the computer (and have just remembered the one thing I had to do that I forgot to – hooray for me), I had a cup of tea with my Mum (she was having withdrawal symptoms, so had to swing by on her way off for the weekend) and went for a bit of a drive in the sunshine when I picked K up from work, which is about the only difference to my days of the last month or so.

But I did all of this while feeling absolutely brilliant. My chest felt open and clearer than it has in ages, I only stopped to grab my breath a couple of times in the whole day. At no point did I get overwhelmed by tiredness and I didn’t have to have a snooze after my afternoon dose of drugs. It would not be an over-statement to say that today I’ve felt amazing.

It’s all relative, I know, and compared to “normal” people, or even to how I was six months ago, it’s probably not much cop – I’m certainly not bounding up staircases or thinking about giving my oxygen the heave-ho – but to spend a day without the burden and weight of lugging around a stroppy chest and cloudy head has been truly indescribable.

(There’s an irony here about an entire blog entry trying to describe something which I can only describe as indescribable. Maybe there’s a hint at how I can cut down my word counts, too…)

I’m also aware that this feeling may not last for long. By tomorrow, the updraft could have floated away on the breeze and I’ll be gliding gracefully back down to sofa-dom, but interestingly I think it’s made me appreciate and enjoy today all the more. I have so many truly rubbish days these days that to have even a sniff of a good one is beyond compare.

If it goes a little way to making this journey a little smoother, to making me a little happier, to making these blowers last a little longer, then I can plough through the rough and enjoy the hell out of the smooth.

Tonight, aided by Happy Feet (go rent it now, it’s brilliant) and the unmistakable rhythm of life, my heart and my head are vibrating with the energy of the world and an old African proverb has just sprung into my head:

“If you can walk, you can dance
If you can talk, you can sing.”

Let the sun shine, let the music play, let the world spin on and don’t let it stop. In the words of a much wiser lady than I, “This is my life and I choose to love it”.

I was back in Oxford today for the second half of my annual review and surprisingly, given the distinctly non-positive vibe that I’ve been getting from recent hospital visits, I actually came away feeling good today.

The diabetes tests looked clear – or at least not significantly abnormal, my blood sugars remaining pretty much within the normal range consistently for the last couple of weeks while I’ve been measuring them, which was a good start.

Even better, though, was my conversation with my consultant, the ever-wonderful Dr Bennett, who is encouraged by my progress since June.

I’ve been more and more breathless recently and it’s started to impact more and more on what I can and can’t do (as you’re no doubt aware if you’ve been following along).  Raising it with the team today I was fully expecting downcast looks and a feeling of, “that’s pretty much where you are now,” and facing a determination to put up with it and keep fighting.

To my immense pleasure and surprise, DocB felt that it’s something we can tackle, given the right effort and application and can aim to improve my breathlessness and stamina and bring my quality of life back up.

Looking at my health in general since my downturn in June, she suggested that although I’d had a really bad month and the infection had hit me very hard, it was encouraging to see that my lung function had pretty much returned to what it was pre-exacerbation – about 0.8./1.3 (actually dropping slightly to 0.7/1.2 today, but I was expecting that, and to go on IV’s, anyway).  What this indicates is that the infection, whilst making me seriously ill, doesn’t appear to have any lasting impact on the conditioning in my lungs.

What has been affected, clearly, is my exercise tolerance and muscle mass, both significantly weakened by spending the whole month in bed and by not being worked on in the four weeks or so since.  It is DocB’s belief that if we can work out an exercise plan, with extra oxygen support as necessary, and work to improve my cardio-vascular fitness, there’s no reason we can’t combat the breathlessness.

This was all news too me – good news, to be sure, but news all the same.  I had resigned myself, I think, to the downward slope of things ahead and didn’t really think there was much of a way around it.  So it feels pretty great to be told not only that there’s potential improvement around, but that the docs actually feel like it’s achievable.

Clearly, it’s not going to mean a massive turn around, but if I can raise my tolerance levels enough to manage a trip out of the house a little more often, maybe a stroll around Borders once in a while, it’ll make a big difference to keeping my spirits up.

It’s doubtless going to be a really hard slog and I don’t quite know how I’m going to deal with it at the moment.  I’ve never really pushed myself really hard through exercise and I’ve no doubt that whatever program I’m given, whilst laughably pitiful for regular mortals, is going to be a hell of a job for me.

But when you’re facing the months ahead that I’m facing, I suppose motivation should be too much of a factor – after all, my entire life right now is focused on stretching things out as long as I can until that call comes.  If doing 5 minutes of step ups a couple of times a day is going to help achieve that, I can learn to tolerate the gasping and rasping that comes with it.