Archives: Hospital

So the New Year has started proper now, hasn’t it?  First day back at work notched up and I’m relishing the challenges ahead.

It was awesome to be back at the Theatre and to see the group again.  The majority of the girls are still the same people I’ve been working with for a while now and it was like slipping back into a comfortable pair of shoes, or a freshly made bed, or something similarly warm, comfortable and welcoming.

The guys I did know seemed so happy to see me that it really lifted my spirits and the ones who I didn’t didn’t seem to think of me as too much of a freak, which was good.

I have to confess, I was feeling pretty nervous ahead of time – it’s been over 6 months since I last properly set foot inside the Theatre and whilst it’s full of familiar and friendly faces, I couldn’t escape the fact that for me, a lot has changed since I was last there.

Striding in with my oxygen cylinder (OK, strolling), I tried to embody the kind of confidence with which I normally arrived at the building, but I found it a lot harder to muster my usual sense of artistic bravado.  Somehow the oxygen makes me feel weaker, and more self-conscious, and at the same time I know that it’s only my attitude which is creating that impression.

As much as people tell me that no one notices the O2, I know that it’s not true.  It may not be as big a deal to other people as it is to me, but it’s also nonsense to pretend it’s invisible.  My hang-up about looking “ill” came back with a vengence and seems to be staying firmly put for the time being, although I’m trying hard to learn to ignore it.

I didn’t wear my O2 all the way through the session – apart from any vanity-related reasons, it’s hard to fully engage with a group when you’re tied to a cylinder and I sure as heck wasn’t going to have the energy to lug it all around the rehearsal room with me.

On reflection, I should have been more strict with myself and re-attached when I was sitting down discussing ideas or talking to the group and only coming off when we were doing something that demanded me being on my feet.

That’s a big part of the learning curve that I’m going to be on for the next few weeks, though, and I know I’m going to have to push my boundaries to a large degree and see what I can and can’t cope with.  I appreciate that I don’t have much room for error, but if I don’t try things I’m never going to know how much impact I can have on things.

The rehearsal itself went really well.  The group are all really keen and worked really well, incorporating the new people quickly and in a much more friendly and welcoming way than has often happened in the past. 

They were also all really pleased with the ideas for the show that Suze had drawn up and happy with the casting for the sections we’ve decided on.  There’s going to be a few tough calls on casting for some of the pieces and I think the Hamlet section could prove a tough one to fill – whoever we choose is going to have to work hard.  The great thing with this group, though, is that you know they all will work hard and give it their best.

The 4-hours I was out of the house was, I think, about my limit for the time being – although the strain was doubtless enhanced by my being off the O2 – and on Thursday I really felt it. 

I woke up feeling pretty good, although tired, and I knew I had to take it really easy all day.  Things seemed to go pretty well in recovery terms until about mid-afternoon when everything took a bit of a nose-dive and I completely ran out of energy.

About 5pm my reserves seemed to have deserted me and I was left absolutely shattered and dying for my bed.  I eventually made it until about 9pm, but not before I’d managed to cause a mini-argument with K over the phone by trying to organise things when I was tired.

I really knew I was exhausted when I found myself in bed reading Ben Fogle and James Cracknell’s story of their Atlantic rowing race and getting emotional with the ups and downs they were experiencing in their moods.  When they talked of missing their wives and getting tearful and I started welling up too, I knew I’d let myself get WAY too tired.

Still, today has been a clear and bright day (mentally, if not meteorologically) and I’ve been to Oxford, where my lung function was only ever-so-slightly down (which I still put down to it being taken before not after physio) at 0.7/1.3 and my weight had risen to 50.8kg.  I also spoke to the dietitian about the sickness I’ve been feeling and she prescribed me… something I can’t remember for a couple of weeks to see if it takes it away.

Tonight, with my Gramps here and my bro heading off into the sunset on another punishing course (who’d be in the army, eh?), we sat and ate dinner together before he high-tailed it away to colder, wetter climbs.  Rather him than me. 

Now all that’s left is for me to get my beauty sleep before Phase 1 of the Move Home tomorrow.  If all goes to plan, I’ll be back living in my little apartment paradise by this time Sunday!

Festive recovery is progressing well – I’ve had two complete days of doing very little-to-nothing and looking after myself and I’m feeling all the better for it.

I’ve got a voucher-splashing trip to Borders planned for the morning, under the guise of taking my Dad over to show him how fab it is, and I’ll be merrily spending my way through the delightful vouchers supplied by K’s big bro and troupe. (Happy now?;-).

I’m still not entirely firing on all cylinders, but I’m finding it much easier to get around at the moment – albeit always tied to an oxygen cylinder or concentrator – and I’m not nearly as breathless as I was yesterday or the day before, which goes to prove two things. 1) that doing plenty of physio and getting plenty of rest really works and 2) TOBI, the nebulised form of the Tobramycin anit-biotic, really does do it’s job spectacuarly well, as I only restarted it on Boxing day (it works on a month-on, month-off basis).

Also had an interesting conversation with O2 yesterday.  I’ve been thinking a lot about getting hold of a Blackberry phone/email device thingy, mostly because it’s a fair assumption that this year I’ll be spending a good deal more time in hospital and that being the case, it would be great to have access to my emails from my bed.  The hospital as it is doesn’t have workable or affordable internet access, so a Blackberry seems ideal.

What it would mean is that while I’m laid up with nothing much to do, not only can I carry on communicating with my friends without running up an insanely huge text message bill, but I can also carry on with most of the work I do for the Trust, which is handled largely through email with contributors, designers and the “bosses” there.

Now, I’ve seen a few really attractive deals on O2 for Blackberry Pearl phones and contracts to go with them, namely one which tell me that if you sign up to a £30+p/m voice contract and £10p/m Blackberry Tariff, you get the Pearl for free.

So I phoned and spoke to O2 customer services and told them that although I’m only 9 months into my current contract, I’d like to add the Blackberry Tariff and get the Pearl.  Fine, they said, that’ll be £220. 

Now, bearing in mind that the phone alone is advertised in Carphone Warehouse at the moment for £199, this didn’t seem like a fabulous offer.  I told them so.  They told me that since I’m not due an upgrade, there’s nothing they can do. 

I outlined my history with the company – loyal customer for over three years, no problems or complaints, no other issues – and suggested that perhaps, since I’m only 3 months away from the end of the contract, maybe they could budge a little on the price of the phone.  I didn’t say I wanted it free, just a little leeway on the £220.  But no, they don’t do it and no one there is authorised to.

So I thanked them politely and hung up, redialed and went through to the option on their phone menu saying “If you are less than happy”.  I outlined the situation again and got the same response – nothing they could do because I was outside the upgrade window.

At this point, having reiterated the fact that I’d been loyal for 4 years, never missed a payment, never raised a problem with them, never kicked up a fuss about anything, I let them know I was feeling like a mildly undervalued customer.

In fact, it had occurred to me whilst talking to them that it would be cheaper for me to go down to Carphone Warehouse, take out a new contract – on exactly the same terms as my current one – plus the Blackberry tariff, get the phone for free and pay out the remainder of my contract with them than it would be for me to get the Pearl through them.  I told them.

At this point he put me on hold and came back 5 minutes later telling me that having spoken to 2 different departments, the 2nd one told him that if I called them back on the 4th January, they would do the upgrade for me.  Just like that.

Interestingly, when I asked what department I needed to speak to when I called back, he told me it was the “Safe” department – the people you talk to when you say you want to cancel your contract.  So being a “valued” customer isn’t enough to get you benefits and deals as part of O2 – you really only matter when they think you’re going to defect to Vodafone or Orange.

Still, who am I to grumble, as of January I’ll be my own personal walking office – marvellous!

For all the forward motion I’ve been making recently, the pendulum was bound to swing back.  I’m sure someone far more intelligent than me said something once about equals and opposites and all that kind of thing, but I have better hair than him, so I can’t be bothered to quote him properly.

Still, after confidently striding forward and warning myself strictly against doing too much too soon, I spent this afternoon in bed after, well, doing too much too soon.

I hasten to my own defence to say that a) I spotted it early and nipped it in the bud and b) actually the hour-or-so I spent in bed on Neve (hmmm… maybe not such a clever idea to name the NIV after all – that could get a little confusing) and the extra session of physio have done me the world of good and this evening I feel top-notch.

Yesterday I went to Oxford to finish IVs – that’s a grand total of 5 weeks all together, my record for recent times.  My chest is a lot better and my lung function was hitting the 0.7/1.4, which is about as high as I go these days.  For those of you who work in percentages, that’s very roughly 20%/25% predicted.  More encouragingly, my SATs were running at 93% on 2 litres O2, which is unheard of for my since around August.

I’m coping pretty well off-oxygen now.  I’m still using it almost all day, but I can cope with wandering around shops (ok, Borders) without it for an hour or so, which is good.

I try to justify it by saying that it makes shopping a whole load easier not having to lug a cylinder around the shop with me, and I reassure myself that I’m good and have it in the car when I’m driving and wear it all the time at home, but if I’m truly honest with myself, it’s still very much a vanity thing.

K and I decided we wanted to cook dinner tomorrow for Mum, Dad and my bro, who’s home for Christmas, to thank them for putting up with me for the last few weeks (well, not my bro, ‘cos he’s not had to cope with me invading his life, but it seemed a bit mean to cook for everyone else and not him when it’s in his home…).  So we had the cunning plan of hitting Tesco’s late last night to avoid the crowds.

At 8pm we thought we’d got it right and BOY were we wrong.  It was still heaving and in one despairing moment of realisation I stood at the threshold of the store in Kingston and realised that it was WAY too huge for me to wander round, especially at the end of a long day.

It’s always a little dispiriting to have to acknowledge your limits – especially when things are looking up again.  But I’m proud of the fact that I didn’t just try to “soldier on” through the shop and completely wipe myself out, but instead called it a night with two bars of Toblerone and headed home.

I think, actually, our late-night jaunt is probably the crux of what lead to my energy shortage this afternoon and, again, I’m pleased I spotted it and took action (or rather, in-action) to combat it without trying to soldier through.  I feel much better for it physically and it’s given me a boost in my mental confidence to know that I’m learning to listen to my body again.

So tomorrow I’ve prescribed myself a day of rest, doing nothing all morning and afternoon and plenty of physio so that I’ve got energy enough to help K whip up a storm in the kitchen and give Mum and Dad a proper thank you.  And my bro, I suppose…

It may be slow progress, but I’m definitely learning – I’m improving my understanding of my body day-by-day and feeling better and better as a result.

The last two days (Monday and Tuesday) I’ve done absolutely nothing – the closest I’ve come to expending energy has been throwing a sandwich together or making a cup of tea, and even that I’ve done very rarely.

I’ve been incredibly strict with myself about sitting doing nothing, or next to nothing – watching TV or reading, not even letting myself work up to a blog (sorry about that) – and I can honestly say I can feel the difference.

Granted, I’m on new antibiotics and a not-inconsequential dose of steroids to boot, which I have no doubt are pushing things along, but lack of energy expenditure is certainly playing a big part in my improvement over the last few days.

Today for the first time in 5 days I actually left the house, heading over to Oxford for a physio session and a quick once over.  For the first time since I started IVs back in November, I actually had enough blow in my lungs to check my lung-function, which didn’t come out great, but the fact that I could do it at all was a step in the right direction.

We’ve opted on another week of IVs in the hope that the improvment that’s been shown over the last 7 days continues and when I eventually finish next Friday (the 15th), I should be fit enough to get through Christmas and New Year relatively hassle-free.

I’ve very much stopped planning ahead over the last couple of weeks and have avoided arranging things that I may have to cancel, simply because it drags me down so much mentally when I do. 

Christmas is rather unavoidable though (and I wouldn’t want to avoid it, either, however much of a Scrooge I may appear from time to time) and so my best plan of attack is to make sure I’m as well as I can possibly be and that I know my body well enough (at its newest settings) to stay on top of things on the day.

The last few days have really energised me, though, and I feel a lot more positive in myself.

At home we have an old joke stemming from my Mum when we were little, whereby every time we complained of any small ache, pain or minor ailment she would eventually come back with the line, “You’re probably just tired.”

It was infuriating to everyone at the time and hilarious to us all now, but I the last few weeks and months have driven home to a large extent exactly what she meant.

When you’re tired, physically and mentally, everything becomes a stretch.  Things that wouldn’t faze you normally can become the biggest hurdles when lack of sleep or simple exhaustion gets in the way.

Having bowed my head and accepted that yes, maybe mother was right (occasionally) I find things much easier to deal with.  It helps that I’m in a well-supported environment and I know that if I need to sleep, I just take myself off and sleep and I don’t have to worry about anything else. 

Hopefully this new-found self-knowledge, when combined with my old self-discipline at staying on top of what I can and can’t do, will help me into a new period of positivity and enable me to move forward in getting some of the things I want to do done.

Even if I don’t get them done, here’s hoping that perhaps I can muster enough time, energy and inclination to actually attempt them.

Watch this space…

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.

I finally put my finger on what’s been bugging me about my chest over the last couple of weeks (apart from the obvious lack-of-performance, obviously).

It’s the illogicality. (Yes, I know that’s not technically a word, but it fits and it suits and you know what I mean.  Plus, I think it’s quite a good word, actually)

I like everything in my life (except my thought processes) nice and linear.  This progresses to that, which results in this.  Start-middle-end.  Nice, steady progression along a linear frame-work where cause-and-effect are easily identifiable.

What’s bothering me most about my chest at the moment is that it is entirely impossible to predict what’s it’s going to do from one moment to the next.  To say it’s changeable is to say that England’s chances of winning the ashes are a little bit on the low side, or that Andy Robinson is “quite” likely to lose his job; the biggest understatement since the brand manager for sliced bread muttered, “I think this could be quite big.”

If I could chart the course of a day and how my chest would be feeling at any given moment – breathless, free and easy, clogged, clear, painful – I think I could cope with the ups and downs better than I am at the moment.

But when I slide so seamlessly from fine-and-dandy to gasping-for-air within the space of 10 minutes having done nothing more than reach for a glass of water for the last hour, it passes all levels of expected fluctuation.

Of course, that’s not going to help things improve at all, but it’s nice to have at least identified part of the problem.

Today’s been pretty good, really.  I woke, as expected, with the most terrific headache first thing this morning, and it took a good hour of sitting doing nothing at all, plus copious quantities of water, tea and painkillers to rectify, but it did go away.

No sooner had I wrestled myself from my bed than we were joined by K’s tiny niece and nephew (aged 18 and 6 months respectively, give or take a few) who cheered the morning up as only lovely, smiling, happy, playful little children can.

A morning of playfulness resulted in an early afternoon of sleepfulness, followed by a later afternoon of not-entirely-awakefullness, and a visit of my CF nurse from Oxford.  That’s not to say playfulness = nurse visit, that bit was merely coincidental, but the rest of the day’s tiredness was precipitated by the morning’s exertions.  But you knew that.

I’m off to Oxford tomorrow morning to see my physio and check what my lung function’s like.  I’m due to finish IVs at the end of the week, but I’m not sure that that’s necessarily going to still be the plan as of tomorrow.  We’ll have to wait and see, but a further course of a week or two may well not be out of the question, seeing as I have yet to notice any kind of significant improvement in lung function, sats or exercise tolerance.

It may be that I’m now at a stage where increases are unlikely and it’s more of a preventative measure, so I may be hoping for a little much, but I’ll grill my team on it tomorrow and see what I should be aiming for.  I think goal-setting is going to be important in the big-picture recovery process from here, and I want to make sure that they are realistic.

Tonight calls for another night on the sofa in front of the telly, relaxing and letting my b body do as it pleases, marshaled by physio and nebulisers.  It’s undoubtedly going to be quite hard to take myself to bed tonight as it’s never easy to sleep knowing that when you wake up you’re going to feel 100 times worse than you do as you settle down, but maybe I can take some comfort in the fact that I at least know I’ll get some sleep.

I thought I had it all figured out. I thought I had it licked. I’d crested the hill of negative thought and was rolling hurriedly down the other side with a devil-may-care glint in my eye and a skip in my oxygen-enhanced step.

But as if to remind me that roller-coasters have downs as well as ups (are we all enjoying the mash-up of metaphors today?), life turns around and bites me on bee-hind like a snake interrupted in the middle of dinner. A really nasty snake that bites really badly and hurts a lot. Like a cobra. Not an adder.

Last night I toppled over into full-on insomniac territory. I managed a grand total of 90 minutes sleep, and for the pedants among you, it was from 5.30am-6.30am and from 6.45am-7.15am. I also managed a brief nap between 8.15am and 8.45am, which I don’t count as sleep as technically I’d already got up in the morning to do my drugs. Even counting the nap, that’s still a whopping 2 hours of sleep.

There are few things worse than lying in bed, waiting for sleep to envelope you, only to find that the Sandman appears to have left you off his rounds for the night, or made his house-call while you were in the bathroom brushing your teeth.

I would have been tossing and turning all night, had my NIV not insisted it was only going to work when I lay on my left side. That may have been a blessing, mind, because if I’d have been lying on my right hand side I’d have spent the night staring at K sleeping soundly all night next to me, which is bound to wind one up a little…

Today, then, has not really followed the pattern of yesterday, nor managed to continue the wave of optimistic advancement. It has passed, and is indeed still passing, in a fog, a mist, a veil of heavy-eyed melancholy as my mind has struggled to make sense of the simplest little thing going on in the world.

It took me so long to respond to K this morning that you’d have sworn her enquiry was more closely related to the implications of Chaos Theory when applied to Newton’s First Law rather than the desirability of a high-temperature, caffeine-enhanced morning beverage. In fact, I’mnot entirely certain I actually gave her an answer, but I got a cup of tea all the same.

I think it’s fair to say that nothing productive has come from my day so far today. I managed to get to Oxford to have my levels checked for my IV’s, and I managed (just about) to absorb the necessary information from my physio to operate my new NIV machine that they’ve given me, but beyond that, very little as actively passed through my brain and come out again in any semblance of comprehensible fashion.

I’m perfectly expecting to wake up tomorrow morning (oh to wake up – what a joy it would be, to be so far asleep as to be able to define oneself as actually waking up!) and read this back to myself and discover nothing more than a thrice-too-long stream of consciousness resembling more closely a collection of randomly-arranged letters than an essay understandable to students and natives of the English tongue.

If you’ve made it this far down today’s entry, I commend you. Personally, I think I’d have given up after paragraph 2, but I suppose there is something of the car crash in the nature of it that may have been appealing enough to endure an extra few mintues’ worth of reading to see if I may actually have lost the plot completely, or merely temporarily misplaced it.

Perhaps, after a night’s rest and – dare I say it – sleep, I will be able to look back on today and pick out the moments of levity that helped me through, but right now, I’m nodding off to daydreams of a bed made of such softness that its entirely possible to lose an entire person into the mattress without the merest hint showing to the outside world.

So long, farewell, auf wiedersehen, goodnight.

23.01, Sunday 19 Nov

K brings me the phone, which she’s just answered, “It’s Nicky, from Harefield.”

“How are you feeling, Oli?”

“Okay.” Shitting myself.

“Any problems that you know of?”

“Nothing new.” My heart’s just stopped.

“We have a match for you on paper. It’s early in the process at the moment and our retrieval team is on the way there now, but we’d like to get you in. It might be a wild goose chase.”

“Okay.” Okay.

Surprisingly calmly (this being my second call from Harefield since I was listed 18 months ago), I gather my things and K gets un-ready for bed. 20 minutes later, we’re at Mum and Dad’s and squeezing into Mum’s Polo, my bro having borrowed my dad’s nice spacious estate for the week to move his stuff out of his barracks in Canterbury.

It struck me as we sailed down the empty, wind-swept, rainy M1 towards London that this may prove to be the most short-lived chronicle of a run-up to transplant in the history of the blogosphere. Wouldn’t that be upsetting?

We arrived at the hospital about half twelve and Nicky, the coordinator for the night, told me that the retrieval process was just starting and that there would be no news till after 3-3.30am.

The ever-efficient team then set about the myriad tests and odd-jobs the docs and nurses have to do pre-op. In no particular order (it’s somewhat of a blur, to be honest) I had 14 vials of blood taken, a venflon inserted (small cannula in the arm for giving drugs through), height, weight, temperature, blood pressure and O2 sats checked, a chest X-ray, and ECG (heart-monitor thing) and a few pieces of paperwork about me to fill in.

The most wonderful part of the exercise was without doubt the full-body shave and alcohol shower. Wonderful little clippers provided by the NHS did for what little body hair I had above the waist, and there were certain other bits of delicate work to do, too. Followed immediately by a shower using a full-body alcohol scrub like soap. And yes, if you’ve just sucked the air in through gritted teeth, that’s exactly what I did, too. Nice.

Prepped and gowned by 2.30am, we set about waiting. And waiting. It all seems to have passed in a blur now, but it was interminable at the time. As the clock ticked past 4am, I began slowly to unravel from my tightly-wound coil of security and self-knowledge.

Bizarrely, what starting playing on my mind wasn’t the fear of the op itself, nor the fact that I might not make it through. Instead, my mind fixated on what it would be like when I came around and I was enveloped in a fear of claustrophobia should I happen to come around while still attached to the ventilator afterwards.

The thing about anaesthetics and post-operative sedation is that it tends to meddle with your memory. So while you may be fully awake and alert and responsive, you may not actually remember it afterwards. Not remembering means that, to all intense and purposes, to you it didn’t happen. So I became somewhat obsessed with wanting to know at what point I would “wake up” – when my awareness post-operatively would kick in.

It wasn’t until 4.30am that Nicky came back to us, by now huddling close together in the room with everyone trying to seep strength into me. The retrieval surgeons had been in and looked and while, on paper, the lungs looked good, on closer inspection the team weren’t happy with what they saw and decided to abort the retrieval process.

It was a no-go.

It’s hard to describe the deflation of news like that – the total release of tension and relief mixed with bitter disappointment mixed with adrenaline-fuelled exhaustion.

Venflon removed, gown cast off, re-dressed in street clothes, I shuffled my way into a chair for a ride down to the car and the journey home. Arriving back at the flat at 6am, I flopped onto the sofa and did my morning dose of IVs which were now due, then slipped into bed, slid onto my NIV mask and promptly fell asleep.

Looking back on the experience today, after a totally lost morning and an afternoon of bleary-eyed chilling-out, it has been a lot easier to cope with than my first false alarm. All the way through the process I was a lot calmer than I was last time, largely helped y the fact that there were no surprises, I knew the drill and knew what to expect. The deflation, while marked, isn’t anywhere near comparable to last time and the roller-coaster of emotions is much more sedate. Gulliver’s Land compared to Alton Towers, tea-cups to waltzers.

I was interested by my reaction and how my fear manifested itself. the post-operative period has never really bothered me before, but that’s what my mind chose to focus on last night. With hindsight, it’s clear that it was merely the way my brain dealt with the general fear of the unknown, latching on to one element and amplifying it to take control and form a focal-point.

I spoke to Dad this afternoon and he’s already started a book on how many times from now we hear, “Third time lucky,” from people. I’m confidently predicting double-figures.

The best thing to happen today, however, is nothing to do with CF, Transplant, false-alarms or anything else. Suzanne, the practitioner and workshop-leader I work with at MK came over for a cuppa with her hubby this afternoon on their way home from Costco, the bulk-by warehouse and brought with them what can only be described as a VAT of Flumps, the little marshmallow shapes. I haven’t seen proper, official, perfect little flumps for YEARS and I’ve been searching high and low. And now, I’ve got a vat full of them!

It may have been a roller-coaster day, but my flumps will keep me smiling through it….!