Archives: Media

Freedom at last – after a week spent couped up inside despite feeling just as well as I had the week previously, it isn’t half a relief to be back at home and within my own four walls.  Even if I don’t leave them for the next 7 days, it’s going to be a heck of a lot nicer than it has been on E ward this week.

That’s nothing against E Ward, you understand, it being the very best of the best places to be if the docs suspect you’ve something dodgy going on in the new blowers they implanted, but let’s be honest: hospital is hospital.

Interestingly, I didn’t find this 5 night/6 day stretch as hard going as my previous one (just a week prior) – I was fairly upbeat and resilient the whole way through.  I think it largely had to do with the fact that when I was admitted the team let me know straight away that I was going to be in until Saturday at the earliest, most likely, whereas the previous week every day had been a will-they-won’t-they let me go connundrum whic, upon the arrival of the nigh-on inevitable “won’t”, always served to deflate and depress me – getting one’s hopes up in a hospital is a bad plan at the best of times, but when you’re feeling physically fragile, too, it’s never good.

Still, three days of being pumped full of more steroids that the US sprint team and the Tour de France combined have served to set me back on the straight and narrow (we hope) and get me sent home for a glorious span of 5 days before my next clinic appointment.  Getting discharged on a Saturday is usually no mean feat, but luckily for me, my team were on duty this weekend, which meant full access to the key decision makers who could kick me out at will (mine or their’s, I’m not sure which yet).

All I have to show for my week’s stay in the Big House this time is a severe sleep-deprivation hang-over.  One of the side-effects of the Methal Prednisalone (the IV steroid they put me) is sleep disturbance and although I managed through the first night with just a bit of a late nod-off and minor leg-cramps, last night saw me lie awake until 6am before being unceremoniously awoken for my breakfast at 7.45.  Under 2 hour’s sleep does not for a chirpy Oli make.

Still, it’s hard to moan too much when I’m just happy to be out and back home.  Perhaps the total lack of sleep last night – and my managing to stay awake throughout the day so far today – will do me good in getting me off to sleep nice and swiftly tonight.  One can only hope.

Oh, the only other good thing to come from having far too much time on my hands in hosp for the week was a chance to get started on the treatment for my next writing project – a low-low-budget flick about a band on tour which I hope I’ll be able to knock out in quick-time and see about getting shot sooner rather than later.

Of course, like most of the projects that get mentioned on the blog in their formative stages, there is bound to be a mishap which gets in the way of this one at some point soon, but then perhaps this will be the exception that proves the rule.  Watch this space is about the best I can say, I guess.

I’m off to flop in front of the telly to try to stay awake till my last dose of daily immuno-suppressant is due at 10pm.

For those of you who read this in time over the weekend, pick up a copy of tomorrow’s Observer, where I *should* be featuring prominently in a health-article to back up the paper’s continued push behind the Opt-Out campaign.  For those who can’t get out to pick one up (and thus see a picture of my lovely mug) I shall endeavour to post a website link up here as soon as it’s up.

I’m back.  24 hours back, in fact.  Stupid viruses.

After hurling myself inside out for 24 hours, I managed to stop only to discover it had either caused or masked a lovely little infection, for which the docs started plying me with IV anti-biotics and wouldn’t let me home.  Wouldn’t let me home for 4 days.  Grrr.

Still, I’m back now and basking in the warm glow of a doting girlfriend and freedom to do what I want (as long as it involves sitting spending quality time with K).

Also feeling very excited about the Organ Donor Taskforce report published yesterday (which I would link to, but let’s face it, how many of you are going to wade through 66 pages of Government-commissioned report if you don’t have to?).  Essentially, it recommends a number of not-particularly expensive solutions to current problems within the current donor/transplant network in the UK which they are confident will – if implemented as the Government say they will – result in a 50% increase in the number of transplants in 5 years.

Amongst other things they talk of making assessment for donation the norm, rather than the exception, in end-of-life care, as well as dramatically increasing the number of Donor Transplant Coordinators and retrieval teams, all under the coordination of a central organ donation organisation.

This really is a massive step forward for organ donation in this country and is actually far more important than the possibility of switching to a system of presumed consent, as has been discussed in the news this week.  The so-called “Opt-Out” system may well increase the number of available organs, but without the infrastructure changes behind it, is likely to do very little to actually increase the number of transplants that are carried out in this country.

That said, the presumed consent debate is a fantastic one because it’s getting everyone to talk about organ donation.  If the 70% of the population who say they are happy for their organs to be used after their death all signed up to the organ donor register, there would be no need for an opt-out system anyway.

Other than that, I’ve got very little going on at the moment – keep trying to plan things but having stupid lung-related hiccups getting in the way all the time.  Anyone would think that 8-weeks post-transplant isn’t very long to be trying to get up and about and leading an active, multi-disciplinary lifestyle.  Honestly….

Full post coming later, as per usual, but just a quickie to say you can see the all new fit and healthy me on Anglia News tonight at 6.30pm.  Failing which, for those of you too impatient to wait for the news or who live outside the Anglia region, you can click the link below and watch the piece on the good ol’ interweb.

Watch in amazement as I run up stairs, talk rubbishly about post-transplantyness and stand on a freezing cold lakeshore with K pretending to look like we’re there for fun!  And look out for Mummy L’s perfect post-tx soundbite….

http://www.itvlocal.com/anglia/news/?player=ANG_Home_26&void=134327

Oli has now stayed in 4 rooms within the transplant ward.  He has been in a high dependancy room, a not-so-quite- high dependancy room, a goodbye-you’re-going-home room, and as of half past 8 this evening an unlucky-you-might-be-here-until-Christmas room.

The past two days haven’t been quite so bad for him.  Yesterday I went to see him along with two really good friends of ours and we merrily chatted for hours and helped Oli almost forget that the day sucked because he wasn’t well.

Today he was definitely starting to struggle with the idea that the goal of going home is getting harder to reach.  One of the highlights of his day was being interviewed by a lovely lady from the Daily Mirror – the article will be in tomorrows (Friday 21st Dec.) paper.  I repeat in case you weren’t paying attention – BUY THE DAILY MIRROR TOMORROW BECAUSE OLI WILL BE IN IT.  I think that’s clear now, don’t you?

This afternoon became a bit of a battle against nausea and tiredness.  He’s had a rough couple of days, along with the physical presence of the latest infection, he has also had to use a lot of mental and emotional energy in trying to keep positive and not get too upset about staying in hospital. 

Unfortunately, no matter how many members of staff say that Christmas on the ward is fun, being part of Christmas on the ward is a big reminder that you’re not remotely well enough to go home.  Fingers crossed however, the decision to keep him in hasn’t been made yet and we still have a few days to get the infection under control and get Oli home.  It’s difficult to get into the Christmas spirit though.

As we left this evening Oli’s mood had changed again to being resigned to his fate, come what may.  Hopefully he’ll get visited by three ghosts this evening who will each help him find the fight to carry on.  I know it’s tough, I’ve been there, different situation but I’ve been in hospital over Christmas.  The big difference for Oli is that he still has a glimmer of light at the end of the tunnel which will lead him home for Christmas dinner.

Plus he’s already received the greatest gift possible so Christmas is already better than it was going to be.

Don’t forget to buy the Mirror tomorrow – you’ll get your first glimpse of Oli post-transplant!

As previously detailed in the hereabouts, I have a mild addiction to Studio 60. Not only that, pretty much all the drama on TV that really passes muster (read: gets on my Sky+ series link) can be found with an American accent on one of the 4 channels. (That’s not as in “one of four channels” because that’s just stupid: I have Sky and therefore a zillion channels, most of them pap. One of the 4 channels meaning Channel 4, E4, More4 or Another4*)

What this means, apart from the fact that I’m essentially paying my television licence fee in order to sit and watch dramas from the other side of the Atlantic whilst my money gets frittered away on 2 Pints of Lager and a Packet of God-Awful Soap Operas, is that I spend most of my viewing time fast-forwarding between ComparetheMarket.com idents which would appear to crop up almost randomly within any given Channel 4 show.

I fully suspect that were I, in my late-afternoon stupor, to sit and watch an entire hour of Richard and Judy, I would find that they’ve replaced the You Say, We Steal Your Money feature with Same Car, Dramatic Difference.

It’s not even really the fact that by the time you’ve seen them for the 44,352nd time they get a bit repetitive, same-y and repetitive. It’s the arbitrary way in which they are shoe-horned into the programs that really gets my goat (if I had a goat).

I know it’s unfair to blame it on ComparetheMarket.com, but hey – we live in a world where it’s necessary for Blue Peter presenters to apologise for the mistakes made by THEIR BOSSES to the littl’uns who wouldn’t even understand what they’d done wrong if they had it explained to them Very. Slowly. Seriously – if you’re old enough to understand what they did wrong, you shouldn’t be watching Blue Peter by now anyway. Go put your hoodie on and sit on a street corner with the rest of the degenerate youth of today.

The timing of the ad breaks in Channel 4 dramas is so ridiculously out-of-place as to be almost comical. I say “almost” because despite it’s cosey up nicely to the mistress of mirth, I still find myself throwing objects at the screen every time they break the flow of a scene to blare 5 more minutes of capitalist propaganda (too far – sorry, go all high-horse Marxist in the middle of my rant there…). It’s getting worse, too. Last night it was the TV remote, which threatened serious damage. Tonight I damn near through K at it.

I KNOW the Americans have a very weird system of throwing ads in almost willy-nilly, but at least they do it at moments that feel right to the show – in fact, all shows on Network TV in America are written AROUND the ad breaks, they actually plan for them when they’re knocking out the scripts.

So why oh why oh why oh why and a few more why of whys can’t Channel 4 either ride shotgun with the Americans and surrender to their ad patterns or – at the very least – work the ads into a sensible spot in the drama.

I’ve lost count of the number of times an episode of Brothers and Sisters has stomped all over the emotional denouement of a scene to go to commercials mid-thought, when there is a fade-to-black which pops up within 2 minutes of the return of the break. Would it kill them to hold off on the ads for another 120 seconds? Would the regulators go bananas? Would their ad clients be raging on the phone? I’m going to guess not – if for no other reason than I chose to heap all of my scorn for the shoddy ad-break practices of Channel 4 Television onto ComparetheMarket.com who have the misfortune of having spend hudreds of thousands of pounds on a sponsorship package for shows which get ruined by arbitrary commercial breaks thrown in by editors with no sense of emotional beats or story arcs.

So come on, people, sort yourselves out. We clearly can’t all enjoy US TV series ad-less, like Heroes on BBC 2, but at the very least we can stop the ad breaks being quite so unflinchingly (or is that flinchingly?) annoying.

I’m starting the Campaign for Correct Placement of Ad Breaks (or, rather more niftily, I think, CFCPOAB) today – to run right alongside Save My Remote Control.

*May or may not be a real 4 channel.

This week I have been going through good days and bad days alternately almost by the book.  The annoying thing about it is that I’ve yet to put my finger on a reason why one has been good and the next bad, other than attributing it to the regular see-sawing of my chest.

Pleasantly, the ups and downs of my chest have not been matched in mood, which makes a nice change having spent so long over the last few months with every butterfly flutter of the lungs causing a storm in my brain.  This week has been pretty positive, all things considered.

I saw my bro on another one of his flying visits and we managed to get a good family night in while he was back for all of 24 hours, as well as catching up over coffee the next day, both or one of which I wouldn’t have been able to do the last time he was home.

I’ve also started to roll along (well, nudge gently) a couple of projects that have been sitting quietly on the back-burner for a while.

Today I sat down with a couple of friends to go over some ideas for a short TV spot for the Live Life Then Give Life campaign, which we’re hoping will serve as a pilot to create a series of them to spread the word about organ donation through the website and other internet video sites.

They’ve taken themselves off with our discussions and brain-storms to draw up some story boards, which I’ll then hopefully go over with my co-director on Tuesday with a view to getting them shot as soon as possible.  The advantage of not knowing how your health is going to hold up from day-to-day and week-to-week is that there is a bit of motivation to try to get things done quickly while you’re feeling good and not sit about on your butt waiting for this, that and the other to fall into place.

Of course, we all know that blogging about it is usually the kiss of death to most of my projects, so we’ll just have to hope that this is the one that breaks the cycle.

I had a long chat to the co-ordinator of the My Friend Oli campaign this week as well.  Bizarrely, although we’ve exchanged emails and messages, I’d never actually spoken to her before.  It became clear pretty much straight away, though, that we’re VERY similar people and that if we’re not careful we’ll spend all day on the phone to each other.

When we did talk business, I discovered that the campaign is actually WAY bigger than I thought it was and looks like it’s going to be all over Durham this year.  We’d really like to introduce it at other Uni’s too, but although we’ve had great support from other Chancellors (after Bill Bryson wrote to them about it) it doesn’t seem to have materialised into support from the student body – and that’s really what we need, as it needs to be co-ordinated from the inside, so to speak.

So if you know anyone who’s at Uni and fancies helping out a very worthwhile cause (with an AWESOME logo, might I add), then please please please get in touch because it would be great to spread this further afield.

It’s nice to have a few things on my plate, but not to have anything that’s too demanding, that’s pressing too hard for my attention or causing me to lose sleep.  I seem, for once, to have struck the right balance.  Let’s hope I can keep it and not find myself flailing down towards that safety net again…

It’s interesting when you do interviews for newspapers, because you never quite know how they’re going to turn out. My experience up to now has been limited to the odd local newspaper reporter giving me a buzz on the phone and doing a bit of a catch-up to expand on a press release they’ve received and the ensuing article rarely bares much semblance to the truth, or to what I said.

What with the perception of the tabloid newspapers in this country for sensationalism and tarting things up, I wasn’t holding out too much hope of seeing my views expressed in the article due in the Daily Mirror.

Imagine my surprise, and yes, my guilty and grudging admission that I was wrong, when I opened today’s Mirror to find not only a brilliantly written appeal for organ donors through their One in a Million campaign, but also the bare minimum of sensationalism in my story. Every quote that is attributed to me, I actually said – that’s something I’ve never experienced before!

It’s great to see organ donation being pushed more and more into people’s consciousness. As I said yesterday, we need to keep encouraging people to sign up and make a difference. In fact, if everyone who said they supported organ donation actually signed the organ donor register, we wouldn’t need drastic measures like the Opt-Out system.

For those of you who’ve not rushed out to pick up a Mirror today (probably still smarting from rushing out yesterday only to discover I wasn’t there…), here’s the link to the article on the web page. I like it, says a lot.

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

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

Feeling foolish?  I certainly am.

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

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

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

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

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

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

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

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

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

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

Crikey, what a busy few days it’s been around here – I’m exhausted (although feeling much better for having spent most of the day tucked up in bed).

After my interview with the lovely Mirror lady on Monday, I spent the day not doing too much thanks to strangely wavering energy levels. However, we were starting to get wind of the rumour that Professor Liam Donaldson, Britain’s Chief Medical Officer, was to announce his intention to push for an Opt-Out system of organ donation in his speech on the current state of the NHS.

For more on Opt-Out, click here.

Indeed, by Monday evening, two members of the Live Life Then Give Life campaign had either been interviewed on BBC Radio 5 Live (Jen) or been booked for silly-o’clock in the morning on GM:TV (Emily – “friend of the show”).

I woke on Tuesday morning and stumbled into the lounge to flip through my recording of GM:TV (as if I’m going to be up to watch her at 6.20 in the morning – I love her, but not that much…) and catch her 2 (yes, two, she’s THAT important) appearances on the show – well, technically two shows, as they switch presenters halfway through.

Calm and collected as ever – in fact, more calm and collected than the presenter at one point, who looked like he was about to jump up and hug her – Emily talked through all her experiences and the tale of her transplant, which I think she now has lodged away in a part of her brain which runs on autopilot when someone says “So, you waited two years for a Transplant, then what happened…?”.

Then, no sooner had I caught up with our little missy’s escapades than I had 5 Live on the phone wondering if I’d go on their show in 20 minutes to discuss what Liam Donaldson had just said about Organ Donation.

Now, being the intelligent, media-savvy gent that I am, having graciously bitten their hand off to get on the show, I thought I’d use my 20 minutes for research and go and check what Prof D (as I like to call him) had said.

What 5 Live had failed to tell me was that he had LITERALLY JUST SAID IT. Like, as they were talking to me, he was talking. The upshot being, NOWHERE, not even the newswires had ANY of the text of his speech, nor did anyone appear to be showing any coverage of it.

Reassured that he had, in fact, called for the Opt-Out system to be introduced, I jumped onto Matthew Bannister’s phone-in show (but as an invited guest, you understand, not just Joe Public calling in from his car on the M6…) to put across the perspective of someone awaiting transplant.

Which I did. It was fun. I was quite good.

And so the day moved on and I sat about and read a bit an watched telly a bit and ate some food and did other sitting-about-type things with not a care in the world (almost).

Until just before 6pm when I get a call from a very jolly sounding young guy at the BBC saying, “My you’ve been busy today, I see you did 5 Live earlier,”. I didn’t have much of a response other than to say, “Er, yes.”

“Would you be free to do News 24 at 9 o’clock from Northampton? We’ll send a car.”

Well, clearly, being the media-monkey that I am, I nearly fell out of my chair, but it turned out I was sitting on the sofa, so I just sort of fell sideways onto more cushions, which is a lot more pleasant than falling off a chair. And less painful.

Strangely, though, I didn’t bite his hand off this time. I asked for 10 minutes to make a couple of phone calls before I confirmed it with him.

You see, I was wondering to myself whether or not this was a sensible idea. 9pm is quite late and Northampton is more than half-an-hour away. That meant that at the best guess I’d be out of the house until at least 10pm, and I know that my chest often starts playing up in the evenings.

Was it sensible to go gallivanting off of an evening, when I’d ad a rocky couple of days anyway and didn’t know how my chest would react? Should I be letting my thirst for stardom over-rule my sensible medical head?

So I phoned Mum, because she always agrees with me and I knew she’d tell me that it wasn’t a good plan and that I was being a very sensible boy staying at home, even though it felt a bit deflating. I got her on her mobile in Tesco, where I could hardly hear her. I managed to get through and explain the situation.

“Brilliant – you should absolutely go! It’ll be brilliant and you’ve got nothing to do tomorrow so you can stay in bed all day.”

Right. That rather changed the perspective on things. So, my angel and devil still warring on my shoulders, I spoke to Jolly BBC Guy again and accepted his offer, arranged the car to get me at 8.15 and sat and waited.

When you’ve done as many radio interviews as I have now, both in the studio and on the phone, both live and pre-recorded, you tend to get a small smattering of nerves which remind you you’re doing something cool but don’t get in the way. When you do TV pre-records like I’ve done a couple of times, there’s no nerves, because you know you can keep going over and over the same thing until you’re happy with what you’ve said.

When you’re doing LIVE TV – for the FIRST TIME – on the BBC…. Well, that’s a whole ‘nother bucket of kippers.

And when you’ve got 2 hours to sit and wait and work yourself up, that’s an even larger vat of cod.

Suffice to say that by the time I was perched precariously on a semi-stool in front of a lonely looking video camera in the corner of the main office at BBC Radio Northampton, listening to News 24 down an ear-piece far too large for my ear, waiting for the presenters to talk to me, I thought I was going to throw up. And I was thinking how stupid I’d look to the gallery of TV Directors and Producers watching my video feed if I just leant forward and spewed on my feet.

Still, I managed not to, which is nice, and I turned out to be reasonably coherent in the interview. I only know that because I watched it back when I got home. The adrenaline rush was so huge that I can hardly remember any of the interview itself from being live and have no idea what I actually said.

All I do remember is stumbling through my last answer after my ear-piece pinged out of my ear halfway through, leaving me with my mouth moving and words coming out whilst my brain is busy screaming, “I hope they don’t ask me any more questions because I’m not going to be able to hear a thing!”. Turns out that my mouth is pretty good when left to it’s own devices, because I somehow continued to make sense and moments later heard an ever-so-faint “Thanks for coming on” somewhere vaguely in the region of my left ear and I thankfully realised the interview was over.

For what it’s worth, it was 10.30pm by the time I got in and I’ve slept through a lot of today, or sat in bed reading, but it was definitely worth it. I loved doing it and am still totally addicted to the media. I think it may have inflated my ego a little much, though, because far too many people have been far too complimentary about it.

Still, just to inflate myself a little bit more, the feature piece on me in the Mirror is going in tomorrow (Thursday 19th July), so I’ll get to see that, too.

If you’re going to check it out, be warned that being a tabloid piece, and being part of the One in a Million campaign that the Mirror is running, it’s likely to focus a lot on the negative side of things. I’ve not seen it, so I don’t know for sure, but from previous experience I’m sure it’s going to be a heart-string tugger, so if you’re feeling fragile, steer clear.

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.