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So, in the grand scheme of things, this week has been a Good Week. 

Following last week’s major dip in form, interrupted only by a day of media insanity which appeared to coincide happily with an inexplicably good chest day, I finally appear to be getting a grip on a) the physical recovery process, with more energy, more internal resources and less time necessarily dedicated to sleep and b) the mental side of the game, which has seen me first acknowledge then work to accept my newly imposed limits.

In fact, my biggest challenge at this moment in time seems to be how to write a blog when covered in constantly interfering kitten.  Pepe, one of Mum and Dad’s two new additions (alongside sister Tio), isn’t happy about my paying more attention to the funny glowing box with movey-cursor thing and there’s something distinctly antagonistic in my fingers on the keys, it would appear.

It’s hard to type with a kitten biting your thumb.

As I improve I am working hard not to get too carried away with recovery and am relying rather heavily on K and my ‘rents to keep me grounded for the time being.

For the first time today I ventured out of the house under my own steam and wanted to do more but was talked down by K.  Dad has a Christmas party at work tonight and needed a lift there, but Mum had been to a Christmas party at work and was one over the limit, so I obligingly offered to run him into Town, from where I was planning to go to the flat and pick up some bits and bobs.

But, considering I’ve now gone two days without an afternoon kip (through lack of tiredness, not stubborn-streak staying awake), it fell to Lady K to suggest that perhaps racing round to the flat, up the stairs and back no doubt laden with odds and sods wasn’t the best way of testing how sustainable my energy levels actually are.

That said, it didn’t stop her urging me to boldly step back into Real Life by stopping at the chippy on my way home…

The point is, though, that as much as I feel like I’m striding forward at the moment and as positive and happy as that makes me feel, it’s important not to lose sight of what a tight-rope I’m walking just at the minute and to do what I can to minimise the risk of  a relapse.

Which means that while it’s important to know my boundaries, it’s equally important to identify them through gentle probing rather than smashing through them at a sprint.

The challenge now is how to ignore my natural instinct to plough ahead full-steam and instead to slowly reintegrate myself to life, the universe and everything.  And those of you who know me will be only too aware just how big a challenge that is.

I mentioned in the middle of last week having a bit of a to-do with Allied Respiratory, the new home oxygen service providers.

At that point, I was mildly full of grumble because I’d cancelled a hospital appointment and spent my entire Thursday waiting in for the oxygen engineer to call round when he’d phoned at 3.30pm to tell me he wouldn’t be coming because the job we’d asked him to do was a 2 hour job and he didn’t have time in his day to do it.

I’d remonstrated with him, and also pointed out the rearranged hospital appointment, at which point he agreed he could at least swing by and drop off a back-up cylinder for the flat and a couple of portables that would at least give me enough oxygen to make my trip to Oxford the next day.

One thing he said did strike a deep note of caution into my brain, though, when he dropped off the portable cylinders telling me I was “lucky” to get them.  How can an oxygen provider think it acceptable that a person entirely dependent on oxygen 24 hours a day is told it’s “lucky” for him that the company can provide it?  It’s unbelievable.

Further to that, when he told me he’d not be able to come that day, he committed himself to coming to do the job first thing in the morning.  However, when he arrived at the flat to drop off the cylinders, I said I’d look forward to seeing him in the morning and his eyes went blank and he clearly hadn’t remembered his “promise”.

In fact, he arrive at nearly 3pm the following day.  I’d gone off to Oxford for my check-up and my brother, who should have been making his way back to work in Canterbury, had stayed in my flat waiting for him.

On the whole, then, not a great start to my experiences with Allied.  I’d heard murmurings from other users that there had been problems, but hadn’t expected to discover them so quickly, nor to such an extent.

Apparently, they’re chronically short of portable oxygen cylinders.  Between the collective brains of myself and a few friends in similar positions to myself, we can’t for the life of us work out why this is suddenly the case.  Having taken over the entire oxygen provision operation, why is the service so chronically short of portable cylinders, when previously there was no problem at all getting hold of them under the old, GP-prescribed system?

Today, things have taken another turn, and stoked my ire yet further.

I spoke to Allied yesterday, explaining that I’d been forced into a move to my parents’ house and that I was now out of portables and had no back-up cylinder here.  I did manage to bring over my concentrator, but it’s not set up for use in multiple rooms here, which means that rather than being the hub of the O2 system as it is at home, it’s now in effect merely a static, bottom-less cylinder.

They told me that because of the change of address I’d have to submit a whole new load of oxygen request paperwork from my GP before they could process an order, as they couldn’t do anything without it.  Luckily, my GP practice is outstanding, and got straight on to it, dealing with them direct and putting in an urgent request to have the oxygen delivered that day.

I received a call from Allied in the afternoon, telling me that they wouldn’t be able to do the delivery today (yesterday), but that they could set it up for tomorrow (today).  I explained that as I was now out of portables, it would need to be in the morning if it was being delayed.  She assured me that she would put me down for an a.m. delivery.

Imagine my surprise (or sad lack of it, so cynical have I become in such a short space of time) then, when today saw no hint of an engineer’s call all morning and still none by 2pm this afternoon.

I phoned Allied.  It looks like the order had been booked on their system for next week, would that be OK?  I took a breath and calmly explained that no, that’s not really OK and today is what they’d agreed and today is what I expected.

She checked the order and told me that I could probably get the back up cylinders (that’s the large ones that sit in a corner or cupboard and are hard to move around) today, but that portable ones were unlikely.

I explained, as patiently and calmly as I could, that this meant I would be unable to leave the house until their next delivery.  She said she understood and she apologised.

Frankly, I think that it’s only my high levels of tiredness and low levels of energy that stopped me shouting down the phone this time, which is good because I don’t like to shout at people on the phone. 

I know it’s not their fault and they’re just doing their jobs from a call centre somewhere in Surrey.  But it’s hard not to be riled when someone behind a computer screen is telling you that you’re not going to be allowed to go out this weekend because they screwed up their bookings and now couldn’t supply your needs.

Even more surprisingly, they don’t deliver on weekends, so there’s not even any hope of getting anything tomorrow. 

To her credit, the lovely-sounding girl on the phone went away and spoke to the engineer working in my area today and chased up whether he had any spare portables “on board” which he could drop with me when he dropped the back-up off.  In fact, he does and I’ve now been assured he will.

But that just underlines the ludicrous nature of the service and the system they have in place.  Clearly, they have no way of telling what oxygen is where, they have no tracking system of cylinders, both full and empty.  The whole service is shoddy and I have no idea how they propose to rectify the situation, but something really needs to be done, and soon.

It seems hugely ironic that the day after I write an article for the Guardian preaching about making the most of the time I’ve got left, that I find myself house-bound at the whim and the mercy of an oxygen delivery system that doesn’t appear to know it’s portable from it’s concentrator.  To put it nicely.

I wait – not with baited breath, because that would be too much effort – to see what becomes of this afternoon’s assured delivery, and wonder how on earth I’m going to meet my increasing demand for oxygen as my chest improves on the new antibiotics and steroids and I want to get out and about more and more.

PS – as promised, following yesterday’s excitement, my article has been published on the Guardian website here, and the Independent interview is available here.

 UPDATED 01/12/06 19:00:

What a fuss over nothing.

The muppets in front of the computer screen may have been able to cock up the proverbial piss up in a drink manufacturing plant, but the engineer couldn’t have been nicer or more helpful.

We weren’t given an arrival time, and were getting somewhat anxious as 5 o’clock rolled around, thinking that they usually finish on office hours.  A swift phone call to Central again reveal he was on call all night, thought and that he would definitely be coming along tonight.

Just before 7 he called looking for directions from the top of the road (no one can ever find my ‘rents’ house) and walked in with one half-size back-up cylinder (half-size being slightly misleading considering it’s actually about 3 foot tall and REALLY heavy) and two of the nice little white portable cylinders (the ones that are actually light enough for me to carry).

When he asked if there was anything else he could do, I chanced my arm and volleyed for some more portables.  He said he wasn’t sure how many of the white ones he had, but he definitely had a load of the little black ones (the portable, but slightly heavier ones).  He toddled back to his van and returned with 2 more white ones and 2 black ones.

I also explained how it would be good to have a back-up cylinder upstairs as well as down, if that was possible, and he immediately went back out to the van to get me another one.

So after all the huffing and puffing of the last 24 hours with Allied at their call centre, I’ve ended up with exactly what I asked for – 2 back-up cylinders and 6 portables to replace my spent ones, all delivered to my new address.

But why did we have to go on the merry-go-round of phone calls we’ve exchanged since yesterday, where they’ve told me this isn’t possible, that’s not possible, I can’t have anything till next week, I an only have one back-up, I can’t have portables.  It seems like a chronic failure in communication across the board.

The engineer was so nice and friendly and completely accomodating – nothing was too difficult, he never once made a face like it might be hard to do something.  He brought everything in, sorted it out and helped with everything I needed.

Why oh why do Allied make it so tough on themselves and so stressful for the patients?

Quite before the media maelstrom that’s been hurtling around today, I spent almost all of yesterday feeling absolutely awful.  It’s remarkable when I look back with all the things I’ve done today that I wouldn’t have been able to even touch on today. 

In all since 7am this morning, I’ve done 3 phone interviews, 1 studio interview, 1 photoshoot and written a 700-word article for the Guardian website.  This time yesterday I was sat on a ward in Oxford hoping to goodness that the docs weren’t going to put their foot down and keep me in.

Yesterday morning I woke up with the worst headache I’ve yet experienced, all thanks to the veto-ing of my NIV due to the pneumo scare.  Not only that, but the CO2 levels in my blood had obviously started to cause havoc elsewhere and I found myself lent over a toilet bowl 5 minutes after waking up depositing whatever was left in my stomach from last night.

I haven’t been sick in a very long time, and I’d forgotten how unpleasant it was.  not only that, but without oxygen on, it left me gasping for air. 

I manged to find my way back to bed and do my IVs, which took a lot more effort than usual, and got pain killers down me with a banana to try to settle my stomach and help them absorb better. 

We had to leave the house by 9.30, so I forced myself up and out of bed, but my head was swimming.  Of all the things I’d meant to do before heading out, I accomplished at most 2 of them, and then only half-heartedly.

At Oxford, I had a session with my physio which saw me bringing up some of the nastiest stuff I’ve seen come out of me for a while.  Not only that, but my headache was refusing to go away and my exhaustion was creeping up fast.

The docs came round after my physio session and we discussed the pneumo/chest pain.  Considering I had a good night’s sleep (barring the morning doldrums), and the pain seems to have gone away in my chest, it would appear that it wasn’t a pneumo after all, just me jumping to not-entirely-illogical conclusions on feeling more acute than usual pleuritic pains in my shoulder.

We decided that the IVs clearly hadn’t done the job they were meant to, and so I’ve been put on an additional drug to marry with my Colistin, Meropenem.  Usually, Mero causes me severe joint pain, but we discovered last time I took it that combining it with steroids was usually effective in taking that element away. 

The only draw-back being once steroid leves go over 10mg (I’m now on 20mg) transplant becomes less likely, for various medical reasons too detailed to go into here.  But it’s only for two weeks and it’ll hopefully improve my lung function and exercise tolerance, so it’s got to be worth it.

Eventually, after a supervised first dose to make sure I wasn’t going to have a massively adverse reaction to the Mero, I got away from Oxford (chauffeured by Dad) just after 2pm, getting back home around 3.30pm in time for some shut eye before heading out again to stock up on portable oxygen cylinders from my stash at the flat.

After a “who’s got the keys” palaver of indeterminate length, we eventually got back in around 7 pm and I was shattered, completely exhausted and good only for sitting on the sofa and wiping out.

Although I did get a bit of a second wind in the evening, around the time Em phoned me to talk about the news and the reactions on the message boards, I was still in bed as early as I could be.

The most important part of my day, though, was in the change of stance on Neve, now that the pneumo had been discounted.  Going to sleep with her on, I drifted off into the land of slumber and only woke on a couple of occasions before my early-morning radio address.

It was remarkable and wonderful to wake bright and alert and with no discernible left-overs from a proper night’s sleep – no headache, no sickness, no nothing.

It’s paved the way for a wonderfully busy day, all of which has taken place within the confines of the house, with the exception of a quick trip up the road.  I’ll be back on here later, with a bit of luck, to outline where else you can see my distinguished self discussing life with CF and other interesting topics of the day…

Updated 01/12/06:

After a breathless day-and-a-bit of media storms, between myself and fellow CF Trust Ambassador Emily we have notched up 4 print articles, over half a dozen radio interviews and she bagged all the Telly attention (but then, she is prettier and much more of a draw than me…), not to mention the rest of the CF community’s coverage, which has included local news country-wide, This Morning, Newsround and forthcoming features in the Daily Mail other weekend magazines.

Articles featuring Em and/or I are available at the Guardian, Herald, Independent and Mirror and Emily also gets a mention on Nick Robinson’s blog on the BBC website.

Articles have also appeared in the Scotsman and Evening Times for our Scottish Brethren, thanks to work from Anders, a North-of-the-boarder friendly-type.

A week has passed since I ejected myself from Geoffrey Harris Ward in the Churchill in Oxford and my adaptation process has continued apace, not with 100% reliable or positive results.

I have to confess for all my jaunty little exploits that have made it up on to here, there have been a number of far less jaunty moments, and some which have had me fairly close to tears.

The interesting thing is the pattern into which life has settled over the past 7-10 days since I got back home again.  Oddly, although every day has been different, they all seem to have followed the same arc from morning to night.

First thing in the morning, once sleepiness has subsided and the world is in focus, I feel positive and upbeat and keen for the day ahead.  I wrap my head around the things I want to do for the day and assess what my energy levels are like and what I think I can realistically get through.  Then, after 2 different nebs, a physio session, some breakfast and a shower, I set about whatever it is within the confines of the flat that I’ve set myself to do.

By the early afternoon, it’s time for a recap on the benefits of sleep, and I get my head down for an hour or so, before stirring to do my IVs.  For a patch of about and hour or two after I wake, I’m recovered enough to pursue things I want to do before the early evening, when tiredness boardering on exhaustion begins to settle in and things become a bit more of a battle.

My chest will start to moan and complain about the strain of, you know, breathing for an entire 12 hours without any supplementary support from Neve (as I’ve Christened my NIV machine, thanks to K’s thinking and Em’s bright idea of making things less scary through anthropomorphism). 

 Joining in the fun, my stomach will announce it’s desire to be sated with a sacrifice like some built-in God of Food who will readily close up and not accept offerings should they not be timed appropriately according to it’s very own desire.

As my body protests, so my mind – and my mood – takes a dive.  The tiredness takes over my faculties for divining the logical and illogical in the world around me, the easy questions of everyday life become heart-wrenching, brain-busting trials of wit whereby turning over to Channel 4 can be the sum of a good 15 minutes worth of hard cogitation coupled with inner debate about the relative merits of watching Nothing Very Much on either this channel or that and wouldn’t-it-be-good-if-we-had-Sky thinking.

The spiral continues into the night and I’m plagued mostly  by the fact that I have to stay up until at least 10pm in order to administer my nightly third dose of IVs before I can retire to bed and the warm comforts of Neve.

(If anyone ever here’s me suggest that an NIV machine is either a) warm or b) comfortable or c) in any way vaguely pleasurable, I suspect it has become time to skip the medication and proceed straigh to a padded cell.)

The night’s are the hardest, as my protesting lungs (even after a second, or third, physio session of the day) do everything they can to make getting undressed and ready for bed the biggest chore of the day.  Breathlessness results from the most minor activity and washing my face and brushing my teeth become the greatest amount of exercise I’ve achieved all day.

And as I settle into bed, I have a tendency in my semi-conscious stupor, to dwell on the things my life has lost in the last few weeks and months.

Even now, sitting writing this, I can see how the spiral starts and escalates, I can pinpoint the moments when everything starts to move in the wrong direction and I can see how my thinking patterns work against me almost constantly.

It may, to some, seem as if I’m outlining “a day in the life” for a sympathy vote, or in order to make people reading this understand what I “go through” every day.  That is not my intention. 

What I’ve found with everything else so far in this chronicle of mine is that by writing it down and reading it back, in a public domain where there is no where to hide, I can force myself into examining my thoughts, feelings and actions in a way I never would in my own head.

By illustrating my point as if to someone who knows me not at all, I simultaneously force myself to see things from a different perspective, to get out of my own well of self-pity and understand what’s behind the changes in mood and strategic thinking.

Smile Through It, that’s what it’s all about – and if you know what it is that makes you stop smiling, you can keep your eye out for it and keep it at bay.

Blogs. There’s millions of ’em. The world has blogs coming out of it’s ears. The world has blogs coming out of pretty much every orifice. So why am I adding to the over-crowded madness and what’s this all about?

I’m here for me, mostly, but I’m also here in the vain hope that someone, somewhere, someday may find some useful knowledge or comfort in the words that will follow and the journey I’m embarking on.

18 months ago, in June 2005, I elected to go onto the active transplant list for a double-lung transplant. I have Cystic Fibrosis and over the course of a few years I had slowly declined to the point where my specialist team at the Churchill Hospital in Oxford arrived at the conclusion that I was now eligible for transplant.

I say “eligible” because transplant is a very odd thing: to be considered for the list you need to walk a very fine line between being ill enough to warrant a) taking the chance of a new life away from someone else on the waiting list and b) taking the risk that such a massive surgical procedure places on your already frail body, but at the same time being well enough that, complications aside, your body will have enough in reserve to withstand the rigours of surgery.

Since I went on the list in the middle of last year, my health has been stable and I’ve been relatively well. With CF, things are all relative.

In September this year, however, things took a turn for the worse and I’m now facing a countdown to the end of a race which is going to end on one of two sides of a coin. Only 50% of people who go on the transplant list actually receive the organs they require to go on and live a full and happy life. The other 50% die while they wait.

Throughout my life coping with the ups and downs of CF – and believe you me they are myriad – I’ve learnt one thing above all others. If you don’t laugh, you cry. Hence the title of this blog.

Whatever happens over the coming months and years, wherever my health takes me and whatever else life throws at me, this blog will be here not only to document the process, but also to remind me when the going gets to its very toughest, that the world is really a very funny place and you have to keep on smiling, because the other options are too dark to think of.

My intention in this blog is to chart my day-to-day progress, both physically and mentally, as I race the clock towards it’s ultimate conclusion – one way or the other.

I’m not (quite) vain enough to think that I’m going to change the world with a little diary-cum-biography-cum-progress report, but as with all things that I do, both for the Cystic Fibrosis Trust and in my life in general, if it makes a difference to just one person and helps them get through a tough time, helps them realise they are not alone or just shows them that life’s not always so bad after all, then it will be worth it.

Whatever you do in life, always have courage in your convictions – throw yourself into it with all your energy and strive every day to be the best that you can be. You truly never know what’s around the corner and regrets in life are the hardest thing to deal with when you face a ticking clock.