Archives: Oxygen

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.

It’s been an up-and-down few days (when isn’t it, these days), but more up than down.

The trouble is, this evening I feel so tired and my back is causing me so much bother that try as I might, I’m struggling to pin-point the highs and lows  of the last few days.

A definite high was seeing K’s big niece, little niece and nephew, all of whom I haven’t seen for ages.  It was nice to see their dad, too, although even nicer of him to go get us a paper (thanks, Rob!).

I managed a good hour or so of fairly sedate entertainment, leaving K to do most of the running around and baby-chasing as little Jack set off exploring the wonders of the un-baby-proofed apartment.   Having palmed off the high-maintenance duties to K, I settled myself with a game of chess and a bit of a story book/CBeebies magazine, which is much more my kind of pace.  Although chess with a 1-year-old knocking about is a far more defensive game.

The rest of Sunday was gainfully employed resting, although we did pop over to my ‘rents for some food in the evening.  The trouble is it’s such a long way away now (yes, 20 minutes’ drive is a long way now) that to avoid being a dangerous, half-asleep driver on the way home, we literally only get to swoop in for food and then run away.  I know parents are parents and they don’t mind things like that, but it does bother me somewhat how anti-social we can be.

I suppose it’s one more thing to look forward to post-transplant: those long, leisurely Sunday lunches which start at lunchtime and roll on to dinner time with a good deal of laughing and chatting in the middle.  Another thing to add to my “To Do’s”.

Saturday was very quiet, resting up at the promise of baby visits on Sunday, and expecting a slightly fuller day of visitors were it not for the odd drunken mishap changing plans around. (No names.)

Today started really well after a bad night’s sleep.  I woke feeling surprisingly spritely and sat reading for a while before showering (with my oxygen!) and doing physio and finally getting through the few pieces of copy I had to write to finish off this issue of CF Talk.  We should now be at a final proof stage, which I should receive in the next few days, and  I can check it, correct the mistakes, sign off the whole thing and get it out.

This afternoon has seen a bit of a down-turn, with my chest getting a bit tighter and me more breathless, with a slow onset of not only a headache but a good deal of back pain, too.

As I write, I’m about to whisk myself off to bed to see if I can settle myself and sort it out, before trying to get an early night’s sleep for a change.  I could really do with a good, long night’s kip.  Here goes…

My days seem to get more and more roller-coaster-y by the week.

Take today:

Woke up this morning and no sooner had I taken Neve off and got out of bed than I was struggling for breath and feeling distinctly uncomfortable, not helped by a significant amount of back pain, a repercussion I’m sure of sleeping in a slightly more propped up position last night.

With regards to my sleeping habits, it seems I can’t win.  Going to bed breathless, as I did last night, demands a more upright sleeping position, or at least having my head and chest raised a little further than I would otherwise choose to sleep.  While this eases the breathlessness and causes less problems with waking up coughing in the night, it plays havoc with my back, which I think ends up slightly unnaturally curved.  But I digress.

I managed to struggle through some breakfast, which I have to admit was a bit of a chore, and I laboured my way through sorting out and taking my nebs before taking myself back to bed to read, where I felt most comfortable, both for my chest and my back.

At 11.30am, I spoke to the lovely journalist feature writer from the Mirror for about 45 minutes and far from ending up breathless, I seemed to get stronger as the interview went on – completely bizarre and totally the wrong way round.

It was a great interview, covering a lot of my life and progression over the last few years up to talking about the present day and the Mirror’s One in a Million campaign.  It was funny talking to a journalist and constantly second-guessing how she was going to write it up; I was very wary of not saying something which she could infer to mean something else.

Asking me what I thought about people who hadn’t signed up, I was trying to explain how frustrating it is that so many people are in favour of donation without actually signing the register, but without saying it’s frustrating, as the last thing I want is to be portrayed as accusing the country of not caring about organ donation or other people’s lives.  She asked me if I felt “let down” by those people and I had to hastily back-track over what I’d said to make sure that wasn’t the impression I was giving.

I’d never say I felt let down by people not signing the register, but it does seem like such a waste that there are people who’s organs could be used which aren’t simply because they’ve never taken that step to make people aware of their wishes.

That said, there’s an awful lot more to increasing organ donation than merely signing up more people to the donor register.  The Sunday Times ran a front page piece talking about the Opt-Out system yesterday, which on paper is a great idea for increasing the number of organs donated.  But in practice, it still requires a huge investment in the NHS infrastructure and we still need to look into the education and training of NHS staff to make sure that the system is optimised.  Simply changing the way in which consent is acquired won’t be enough.

Back from my rather lengthy segue, I found myself feeling much brighter after the interview and managed physio and nebs before heading to bed for a bit more rest and reading.

By mid-afternoon, I had recovered sufficiently to get out of the house for half an hour to run and errand with K, which was a really nice change of scene.  Although I was tired when I got back, it was nice to get out and enjoy a little bit of the nice weather.

This evening, things have swung back a little the other way.  In preparation for the photographer from the Mirror coming round tomorrow, I decided to have a shower to wash my hair and boy was that a bad idea.

The problem with a shower over a bath is that it’s very hard to wear oxygen in the shower, with wires hanging all over the place and water running over your face, and even harder to wash your hair with specs over your ears, so I tend not to wear it.  Tonight’s shower was, I think, one of the single most uncomfortable breathing experiences I’ve ever had.

It’s not that I was dramatically out of breath – not panting or gasping for air – but more that I just couldn’t seem to get enough air into my lungs to keep me going.  The whole thing from start to finish probably took me about 3 minutes and it was horrible.  By the time I finished I had to climb out and sit down in the bathroom for a good 10 minutes to recover myself.  Not nice.

Still, now I’m fresh and ready for the snapping man and I have very little to do between now and then, so I can try to make myself comfortable and chill out a little for the evening.  Hopefully my breathlessness will be under control tonight, so I can sleep in a more back-friendly position, but we’ll have to wait and see what my chest roller-coaster throws up for me tonight.

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

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

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

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

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

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

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

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

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

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

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

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

I say, sometimes a little bit of communication goes a long way.

Following my recent let-down from Allied, where I was left waiting for delayed delivery after delayed delivery, I sent off a “strongly worded letter” to them and got an almost immediate response.

Now, there’s two parts to this story – a personal and a “professional”.

No sooner, it seemed, than Allied had received my letter, they were in touch and full of abject apologies for the confusion and the misunderstandings.  And, in fairness to them, it was a very genuine and “un-corporate” apology, too.

Having explained in my letter that I can’t really carry their PD300 cylinders comfortably and really need the lighter weight PD430s, they straight away put me onto a fixed weekly delivery, commencing this Monday, of 6 PD430 cylinders to last me the week (which is more than enough) and they will continue to arrive every Monday unless I phone them to let them know they won’t be needed.

I have to confess, I’m over the moon.  To finally have access to the right amount of truly portable oxygen in quantities enough to last me a whole week of doing whatever I please is fabulously free-ing.  I’m looking forward to a new ability to do what I want by myself without the oxygen-planning issues I’ve had up to now.

What concerned me, though, was that my “solution” with which I’d been provided was a panicked stop-gap to “shut me up” and get me off their backs.  The cynic in me was squirming at the thought that if I was contented then I’d stop writing letters which get copied to the CF Trust and Department of Health.

It was important to me to make sure that it wasn’t just me that was getting the best of the sevice, but that other people in my position who weren’t so willing to speak up, or didn’t know there were other options available, can get the best, too.

To my immense surprise, and no little pleasure, I discovered that far from “fobbing me off” with the appropriate organisation, the team at Allied are really keen to improve their service and get things working as they should be – and to involve me in the process.

Already I’ve been told about a new cylinder they’ve aquired which is not only lighter than the PD430, but lasts longer, too, and it is Allied’s expressed intention to prioritise the CF community with them.

PWCF are, I think, a unique breed among oxygen users in that they are the youngest and most independent of the type of people who may need home oxygen therapy.  At the same time, they are often the smallest and weakest of the lot, too, meaning that the “portable” oxygen tanks need to be pretty light to really be “portable”.

Allied seem to have taken this on board and are working hard to identify PWCF among their patient lists to make sure they are the first to benefit from the new cylinders.  All GPs who prescribe home oxygen are suppose to add a code to the order form to indicate the medical condition for which the oxygen is being supplied.  Sometimes this doesn’t happen and Allied are unaware of a patient’s CF status.

For this reason, if you’re reading this and you’re a CF patient who receives  oxygen from Allied, you should email Sue Brooker at communication@alliedrespiratory.com to make her aware that you have CF and that you would like the light-weight cylinders.

Above all, communication is the key here.  I am actually really confident that Allied are doing all that they can to improve things at the moment – and I honestly never thought I’d see myself writing that.  But if they don’t know a person’s needs then they can’t do their best to deal with them.

As with many things in life, communication is vital – making sure everyone’s on the same page and that people can get the things they are entitled too, whether it be oxygen, money, services or anything.

Every good relationship thrives on good communication and this experience has taught me a lot about how little is needed to make a difference if you just talk to people.

It’s been a bit of a gap again since I last posted – I seem to have lost my blogging momentum, although I have a feeling it’s because the evenings are much harder for me now than they were. I used to write my blog posts right before I went to bed at 10 or 11 at night, but now I’m usually struggling quite a bit with breathlessness by then and sitting at the computer is about the last thing I want to do with my bed calling me.

Still, I’m sure I’ll work myself back into a groove somewhere.

I had intended to sit here this morning and launch off into another rant about Allied Respiratory (yup, still rubbish) but I’m not sure I can summon the energy or the bile to do it proper justice. I’m doing so well at the moment in terms of energy levels, happiness and all-round doing-things-ness that it seems silly to waste any of it venting my fury at Allied. And it’s such a glorious sunny day outside that I don’t want to spoil it with grumpiness.

I will say, however, that yesterday I was not quite for circumspect or forgiving when they failed to turn up with my oxygen delivery for the 2nd working day in a row. Having expected it on Friday, only to have it moved to Monday (that’s a weekend with no spare O2) and then pushed back another 24-hours yesterday, I was seething. Particularly as no one from Allied deigned to call me to tell me.

The way they treat their patients/customers/fools is completely reprehensible. When I phoned to ask about my delivery at 3pm and asked if anyone had been likely to call me to tell me not to wait in for it, I got a nice, curt, “No, I don’t expect so, not at this time in the afternoon.” Cheers guys.

Do they honestly think that just because I’m transplant-listed and dependent on 24-hour oxygen I don’t have anything better to do with my time than wait around for cylinders of oxygen to let me leave my house? It’s pathetic.

Anyway, I took it upon myself to draft them a letter expressing my regretful displeasure at the standards of the service they were offering and I eagerly await their response. Not that I’m expecting them to do anything.

But I’m not going to let that dominate things today (well, not unless they fail to deliver this morning and mean that I have to scrabble to find K an alternative lift to her appointment in Northampton which I’d not have enough oxygen to run her to). Instead, I’m going to enjoy looking out at the sunshine and contemplating the next move in my rather unhurried life.

The last week or so has been quite nice, as I’ve had nothing really to do or to focus on, having not come to any conclusion as to what I’m tackling next. I’ve just knuckled down to finishing off the next CF Talk, but most of the copy for that should be done by the end of the week.

I know, though, that if I don’t pick myself a project soon, I’m going to drift off into a little no-man’s-land of indecision and boredom and get into a vicious circle of boredom/tiredness/negativity.

The best thing about the last couple of weeks has been finally working out the ins and outs of my body as it is at the moment and finding the balance between activity and rest – knowing what I can and can’t manage and how to deal with whatever exertion I do undertake without running myself into the ground. It’s been a much longer and trickier learning process that last time I was doing it back in December, but I finally feel like I’ve grasped it now. Famous last words, I know, so keep your fingers crossed.

Now I’m off to sit and watch the clock tick round till Allied turns up with today’s delivery.

On top of the new play, there are more things bubbling along in the Oli-melting pot at the moment, all grabbing my attention here, there and everywhere – that’s how I love it, though.

First off, and most importantly, there’s the Activ8 Youth Theatre show at Milton Keynes Theatre, which is coming up on April 22nd and is coming together really nicely in rehearsals at the moment. We’re currently chatting about marketing strategies and getting all the info on the show out to a wider audience than would normally support a Youth Theatre show, mostly because a) the kids and young people taking part really deserve a full house to show what they’ve achieved and b) it’s all in aid of the CF Trust.

So if you’ve nothing in your diary for April 22nd, click here NOW and book your tickets to come and see the show. It’s going to be a knock-out and the earlier you book, the better seats you’ll get, because they’re all priced at a fiver – that’s cheaper than a night at the cinema!

Beyond April, the LLTGL team have a couple of projects we’re starting to look at, including looking ahead to a repeat of Laughter for Life next March, following the immense success of this year’s show.

We’re also looking at the possibility of organising some kind of a rally – maybe in super-cheap cars – which would take place in early autumn and involve a jaunt around the British Isles in some form or other. And, naturally, would end in a nice big party when you reach the finish.

There’s lots of good ideas bouncing about and I think it’s something we’re going to pursue soon, but it’s just a case of nailing down the format and looking at logistics and things like that.

Keep your eyes peeled for more info as and when.

On top of all of that, I’ve got the new issue of CF Talk to turn around and get off to the designers so we can get it out at leat vaguely in the right timescale. OK, so it’s still going to be as late as ever, but I promise it’s going to be good.

If you’re not already on the mailing list to receive CF Talk and you’d like to (it’s free, from the CF Trust) just email here with your name and full address and we’ll make sure you get a copy.

So just a few bits and bobs going on for the moment – nothing too drastic.

Oh, and I also received an email from Bill Bryson yesterday, letting me know how hugely successfully the organ donor campaign has been going at Durham University, where he is currently chancellor. Not only that, but that he was taking the campaign idea to chancellors of all the other uni’s today to see if we can’t take it nationwide.

I met Bill around this time last year at the CF Trust’s Breathing Life Awards and immediately hi-jacked him for an interview with CF Talk at some point later in the year. Sure enough, he obliged only to happily and our brief 15-20 minute phone chat turned into nearly an hour.

In the middle of the call, while I was supposed to be interviewing him, I mentioned the fact that I was waiting for a transplant (it was actually in the context of a question about holiday destinations) and he turned the interview around and positively grilled me (in the nicest possible way) about transplants, the organ donor register and the problems that we have with donation in this country.

From then on, things seemed to take a life of their own and it only seemed that a light jogging was needed from Bill to his students for them to shoot off and go crazy with the idea – running off T-shirts and organising the campaign with amazing professionalism, it would seem.

Apparently, although I’ve yet to see the “merchandise”, it all centres around the hook, “My friend Oli…”. Being the naturally shy, introverted type that I am, I obviously feel very uncomfortable about all of this, and the prospect of yet more attention being focused not only on Transplant, but on me personally. However, sometimes in life you have to make personal sacrifices for a greater cause, and I feel that this is one of those times.

I mean, come on, a campaign named after me!?! Pretty soon it won’t be lack of portable oxygen keeping me in the house, it’ll be a head too big to go through the door….

Well… wow.

Over the course of the last 7 or 8 weeks since I first officially came on board the Laughter for Life project, I’ve sat down or laid in bed at night and thought about how it was going to go and ru all kinds of best-case/worst-case scenarios through my brain. But none of them came even close to last night.

It was, without doubt, one of the best nights of my life and one of my greatest achievements. I felt both proud and piviledge to be part of such a spectacular and succesful event and I can’t even begin to express my gratitude to all of those who were involved, helped out, donated or just encouraged us to do it.

Shattered now, yes, but boy was it worth it.

We didn’t have access to the space until 6 o’clock, so we turned up en masse at the venue around 5.30 to put our stuff down in our function room and lay out our battle plan. Emma, myself, Paula and Rose all took on various jobs without much discussion and everyone just seemed to fit in around what we were doing.

I don’t want this to be a stupidly prolonged thank you session, but I think it’s safe to say that without the assistance of the “significant others” – Brad, K and Julian – things would have been a lot more bumpy.

I left everyone to handle the front-of-house goings on and found my way to the auditorium and found Suze all ready and raring to go as our Stage Manager for the evening. I had no idea that she was going to be as busy as she was – having assured her it was just going to be a case of jogging each act with a 5 minute call before they were due on stage.

As it happened, she was completely invaluable, doing all the legwork that I couldn’t have done. I think our partnership for the night was rather like the proverbial swan, with me sitting serenly above the water looking calm and controlled and marshalling people here and there, whilst Suze paddled away furiously under the surface making sure everything I was marshalling was where it should be to be marshalled.

The acts all turned up in plenty of time (more of an achievement than you’d have thought, let me assure you) and were absolutely brilliant to a man. Kind, generous and fun to chat to, I managed to have a good giggle before we even got to the show itself.

I had Rob, my documentary cameraman, following me around getting all the madness on tape, so it’s going to be interesting to look back on it in a few month’s time and see just how calm I was (or wasn’t!) looking.

We had just over an hour to get everything set up, including rigging a follow spot, getting the band set up and sound-checked and giving the acts a chance to familiarise themselves with the space and the set-up.

They all wandered on stage from the green room just before we opened the house (let the audience in) and chatted with the band to arrange their walk-on music, which was great for them to be able to choose. The house band – Big Buzzard – were brilliant and added such a sheen of professionalism to the whole event.

They were something of a last-minute addition, having offered up their services at relatively short notice, but I’m so glad we took them up on their offer – they really added that extra dimension to the show.

The show itself was simply stunning. The entire bill was nothing short of hilarious and several times throughout the even I thought I was in danger of embarrassing myself with loss of bladder control. If I’d not be tied to an oxygen cylinder, I’d have been rolling in the aisles.

Bill Bailey strung the whole thing together perfectly – giving everyone perfectly distilled little pieces of his humour whilst linking between the acts.  Geoff Whiting, Glenn Wool and Rob Rouse tore through the first half and had me coughing with laughter the whole way.  After the break, I had managed to compose myself enough to be less of a distraction through Ian Stone and Dara O’Briain’s sets.

During the interval, I popped backstage to the Green Room to grab a fresh O2 cylinder – it being the nearest secure place to leave them through the show – and was planning on heading out front to catch up with all the various friends who’d made the effort to come along.

As it was, I ended up in a really long chat with Rob, Glenn, Dara and Ian about my O2 and then segued into CF and its various effects/characteristics.  They were all genuinely interested and keen to learn, and being the Ambassador I am, I’m never going to pass up an opportunity to educate people on CF!

After the show, I was keen to make sure everything got sorted backstage, but was hurriedly ushered off to make my presence at the after-show drinks reception felt.  Although I think what I actually ended up doing was making sure that Richard Madeley understood all of my gobbledigook on his crib sheet for the auction.

Emma stood up and started things off with a run of thank yous and talked for a bit about where the money we raised was going and what we were all here for.  I then followed up with a brief heartstring-plucker to get everyone in the mood to dig deep in their pockets for the auction itself.

I have to say I’d not done any prep for it apart from thinking about my opening line, and I was pretty impressed with what I came up with.  I knew I’d have to talk about some difficult stuff, but I think I’m so used to it now, it just rattles off without me having to think about it too much.

It seemed to set the tone well though, (“Thanks a f**king lot” was Richard’s response when he took the mic from me) and the auction went really well.  Considering all the lots we had were donated for nothing, everything we cleared was money straight in our boxes and we did a great run for 11 lots – over £1,800.

That figure will be swelled over the coming few days with cash from programme sales and the collecting buckets (somewhere in the region of £1,200), and individual donations (which is currently overr £1,000 and expected to rise) – all of which is to be added to our ticket sales, which is somewhere around £15,000.  All told, we’re looking pretty good to hit £20,000 for the whole night – an astounding and truly humbling amount of money.

If you’d like to donate, please please please do – you do it safe and securely (and anonymously, if you wish) at our Just Giving page here.

I think one of the biggest compliments of the night for me, though, was to hear today that there were people in the audience who had no idea they were at a charity gig at all – they had bought their tickets purely on the strength of the bill we presented (no pun intended) and when they realised it was for charity and learned about the cause, couldn’t wait to dig into their pockets and drop cash in our collecting buckets.

I said last week that this whole experience had taught me how wonderful people can be and to believe in the spirit of human nature and it’s only been reinforced over the last couple of days.

This whole event has been one of the greatest – and most rewarding – experiences of my life and I have to thank Emma and Emily not only for letting me be a part of the project they started, but for allowing me to feel so much a part of the team and the cause.

If you’re not already signed up to the organ donor register, you have time to do it now.  If you’ve just read through the whole of this blog entry, you clearly don’t have enough to do today, so you’ve got enough time to take out 2 minutes of your time to go to www.uktransplant.org.uk and sign up right now – it’s fast, it’s electronic and it could make a difference to up to 9 other people’s lives.

Don’t let your death be in vain, and don’t let the 400 people who died last year while waiting for a transplant have passed for nothing.  If there’s any message that should come from this weekend, it’s Live Life Then Give Life.

I’m in a bad mood: a grump, a fog, a depression, a dip, a lull, a negatively-buoyant, anti-happy smudge of a grey-day melancholy.  And I don’t really know why.

It could be the over-exertion of spending a day on my feet shooting the Youth Theatre video yesterday, where I was less than proficient at keeping my energy levels boosted and trying to stay seated as much as possible so as to conserve as much energy as possible.

It could be because this afternoon I went out to the cinema to see Hot Fuzz (which is great) when I should have been lying in bed forcing my body to recover from yesterday’s runabouts rather than forcing more activity on it.

It could be because I missed my dose of steroids at lunch time and didn’t catch up with them until nearly 6pm this evening, so my system is significantly down on it’s currently beefed-up power supply.

It could be that after going to the cinema, which I shouldn’t have done, following a day of shooting which I didn’t manage well, forgetting my steroids and driving over to Mum and Dad’s and back again just for a bite of dinner and not taking oxygen along for the car journey, I’m just a little bit pooped.

It could be that I’m just tired.

Whatever it is, I’m in a really bad mood.

This is supposed to cheer me up – my blog and blogging on it.  It’s supposed to remind me that when the going gets tough, the tough get going – or at least in my case the tough laugh in the face of the other toughness and tell it to be on it’s merry way because tough isn’t welcome in this part of town and if it doesn’t go away swiftly-and-I-mean-right-now then I’m going to do something really drastic like laughing even harder.

It’s not.

I’m still just feeling pretty grumpy.

So I’m clearly beyond help.  Far beyond the outer reaches of the depths of the far side of the distant part of somewhere that’s really not very close to the vicinity of the place where I am and help’s ability to reach me.

So there’s only one thing for it: I’ve just got to go to bed.  And sleep.

Like all big problems in life that at times seem insurmountable,  I’m confident that this will see me through.

Actually, thinking about it, there’s not many insurmountable problems that are cured by sleeping.  Insomnia, maybe.  But not cancer.  Or AIDS.  Or even HIV, for that matter.  War is rarely solved by sleeping, although I suppose if all the people on both sides were sleeping then they couldn’t be shooting each other, so it’s a kind of solution, but not really practical or workable as peace-plans go.

Murders aren’t solved by sleeping, and dogs aren’t walked by sleeping.  Sleeping does nothing to stop the spread of malicious rumours regarding the alleged illegal exploits of footballers or politicians, nor does it make any headway into the resolution of global warming.

It does, however, stop mindless, idle drivel like this, because when I’m asleep I can’t type.

There are many things on this earth and in this life for which we should all be thanking the Good Lord who watches over us.  And me being asleep and not writing any more of this is one of them.

Good night all.