Archives: Transplant

I’ve come to the conclusion that if I’m going to be sitting around on my rump for the greater part of the passing days, then I might at least put the working parts of my body to good use and exercise my eyes and brain by learning some new stuff.

So in a spirit of adventure, I have embarked upon devouring the full 800-odd closely-typed pages of a biography of Churchill written by a man so famous that his name eludes me and shall continue to do until I clamber into bed this evening, seeing as I’m not inclined to rise myself from my typing post to go and check it now.

(The thought has just occurred to me that I could check the author’s name on Amazon, and even provide a link to said biography, save for the very important fact that it would interrupt my flow and my stream-of-consciousness would become merely a trickle.)

It’s heavy going, for sure, and I’m only managing about a chapter a day – any more and I don’t think I’d take any of it on board – but it’s fascinating stuff.  He was quite an impressive bloke that Churchill, not just bowler hats and cigars, you know.

I’m also working my way through the Alastair Campbell Diaries, which are just as fascinating, albeit in a very different way.  They’re much more easy to read and digest, too and being in daily-diary format (my personal preference for historical/biographic material) are much easier to pick up and put down.

I say easier to pick up, actually they’re mildly hard since they’re about the same numberr of pages, but in hardback not softcover, making Alastair Campbell more weighty than Churchill and I bet that’s not something oft said.

Given the political bent to my current reading, I have developed something of an obsession with it over the past few weeks and have additionally to my real-world reading, spent a lot of today online learning all about the parliamentary process and goings on in the Houses of Parliament.

They say you learn something new everyday, which is undoubtedly true, but by my judgement, I can after today go for the next eight and a half weeks without learning a thing and still hit my average for the quarter.

Other than that, I’ve not done much today.  Harefield tomorrow – I’m going to lobby them with my new-found political powers to bump me up to the top of the list and get my butt-sittery days behind me.

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…

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.

The funny thing about not doing very much is that when things do happen in your day, it makes them seem like a much bigger deal than perhaps they would seem on another day.

On the other hand, the ups and downs are coming in so thick and fast at the moment that I don’t really know what to do with myself at some points. Most weeks seem to end with an interesting good news/bad news summary for the week, although I try not to dwell on that too much lest the knowledge that the week contained more of the latter than the former start to drag me down again.

Then you get days like today, when the good news/bad news cycle suddenly notches up a gear and starts flying along quicker than a steroid-powered rider in the Tour de France.

I woke up this morning just before 9am, a good average morning wake up time, feeling pretty good. After doing my nebs and physio, I’d noticeably slowed down a good chunk and was feeling a distinct lack of energy. Immediately, my head starts to worry about how much of a struggle today is going to be.

Luckily for me, I didn’t have that much time to dwell on my thoughts because for three quarters of an hour between 11am and 11.45am, the phone didn’t stop ringing. If you want a clearer demonstration of a good news/bad news day, you’ll have to search long and hard. Although it was really bad news/good news. The phone calls went as follows:

– Lisa, my nurse from the Churchill in Oxford calls and tells me that the result from my Glucose Tolerance test in my annual review was high, a possible indicator of the beginning of CF-related diabetes (CFRD), more on which later, but suffice to say it didn’t put a smile on my face. She’s going to try to find me a blood sugar testing kit for me to monitor my sugars for a couple of weeks before my next clinic visit on 2nd August to see what’s going on.

– Mum phones. Tell her why I’m not sounding over-joyed. She tells me not to worry about the GTT. Immediately, it makes me worry. Mum only tells you not to worry when there’s something to worry about (or at least only says it in that tone of voice where she doesn’t sound entirely convinced there’s nothing to worry about). Tells me my Grandpa is up for the weekend if I want to come over and I’m left to ponder if I’ll have the energy to make a trip to Mum and Dad’s to see him.

– Emma calls to tell me that the Daily Mirror want to run a feature on me and Robyn, who is also currently waiting for a double lung transplant and also has CF, and is currently the face of National Transplant Week. She asks if I’d be interested. I know it’s not really a question because she knows how much of a media monkey I am. She has to check with Robyn, too, but will get back to me.

– Emma calls again, Robyn’s on board, so she gives me the writer’s details.

– I phone the Daily Mirror writer and talk to her a bit about donation and things. The spread will form part of their One in a Million campaign, through which they’re aiming to sign up a million potential organ donors. We arrange a proper telephone interview for Monday morning and I pass her Robyn’s details.

– K phones from work after I text her about the Mirror piece. She’s excited (she tends to be more excited than me about pretty much everything, for which she thinks I’m rubbish) but can’t talk for long, so I don’t tell her about the GTT results.

The thing is, I don’t really know what to feel about the possibility of CFRD. What confuses me is that the perception of people being diagnosed with diabetes is that a massive blow and in some ways the end of life as they know it. Just think how many “Oh God, I’ve got diabetes” stories you see in medical dramas and other TV shows. Just this week, K and I watched an episode of Brothers and Sisters, the new Channel 4 show, in which the family’s life crumbles around a daughter’s diabetes diagnosis.

But at the same time, I know plenty of people – many of my friends – who have diabetes and CFRD and it makes no apparent difference to their lives. There are countless stories of people doing all sorts of things through diabetes – take Steve Redgrave, who won an Olympic medal while dealing with it.

So it seems like it shouldn’t be that big a deal, but at the same time I think my mind has been programmed into thinking it’s a nightmare.

I certainly don’t relish the thought of yet more drugs and treatments and things to think about during the day, but as Lisa said on the phone today, it may explain why recovery times seem to be longer at the moment. Perhaps getting my blood sugars under control – if indeed they are out of control, which we still don’t know for sure – will open the door to a more full-on recovery and bring back other little aspects of life I’d given up on for the time being, like popping out to the shops.

I suppose the biggest problem with having not very much to do all day is that it gives you a lot of time to dwell – to think on things for far too long, when in an otherwise active life, you’d have busied yourself with something that takes your mind off it. When you feel so short of energy that you can’t engage with anything, your mind is free to take itself off to all sorts of places you’d rather it didn’t go.

So I’m deciding for myself tonight that I will go to bed not focusing on the “maybes” of dubious GTT results, and instead relish the the thought of FINALLY getting to maych Emily by hitting the National Press. OK, I’m a long way behind her in media stardom for now, but I’ve got much more in my tank yet. Just you watch…

It would appear that my Monday was, in fact, a delayed Sunday (or a British Rail Sunday, as I prefer to call it), bringing with it as it did all of the slowed-down, energy-less deflation that I was expecting to get as a hangover from my Brummy exertions.

I haven’t been feeling completely rubbish, but it was certainly a LOT harder to get up and out of bed this morning than it has been for the last week or so.

A good session of physio once I had managed to get up and about seemed to sort things out, but I took the day very easy anyway, spending most of it on the sofa watching the extras on my King Kong DVD (have been totally addicted to the superb production diaries) and getting through 3 episodes of the first season of Entourage, a show which managed to sneak under my radar but which is brilliantly my kind of thing, following as it does the path of a Hollywood actor and his close-knit bunch of friends. Aspirational TV, I guess you could call it.

Once my batteries were sufficiently DVD-charged, I did manage to plonk my butt down in the study and get some work done, reviewing pages for the new issue of CF Talk and responding to some emails which have been hanging around for my attention for a while.

Also had to tune in to Richard & Judy this evening to catch the ever-wonderful Emily turning on the charm for Mr & Mrs daytime (or is it prime-time?) TV, along with her charming and incredibly open mother, whom I like to call Mrs T. Using footage from the various interviews they’ve done with Emily over years, pre- and immediately post-transplant, I have yet to see a more convincing advert for the benefits of organ donation that seeing the contrast in Emily in those films.

The thought of the immense and immeasurable ways in which my life could change with just one phone call is at once hugely exciting and tremendously saddening. It is impossible to see into the future and to know what lies in store for me, but the thought of such amazing, intangible possibilities sitting so close but so very far from reach is a hard one to reconcile in one’s mind.

It’s a process in which I feel like a terrified passenger, willing the runaway train to stay on track and ease into the station set for new life, whilst all the while knowing that one little bump will send it hurtling off the rails.

How do you live your life from day-to-day with something like that hanging over your head? I’m not sure even I know, except to say that if I wasn’t living it, then there’d be no point waiting for the transplant, I guess.

So, for those of you who are in touch with the Big Man Upstairs, now’s the time to get on your knees, bow your heads or do whatever comes most naturally to you when you pray and ask Him to bless me with a second chance. And for those of you who don’t believe, well, maybe He’d like to hear from you, too.

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.

One of the joys of finally being off IVs is not having the alarm blare at 8 o’clock every morning to get you up and out of bed to do your morning dose.  Annoyingly, my body seems to have seen fit to re-set it’s internal clock to keep raising me from my slumber sometime near or just after 8am anyway, as if I’ll miss out on something important if I don’t.  Regardless, it’s still nice not to be woken by an alarm, I suppose.

I had the BBC round today to do an interview for Look East, the local news bulletin for the Anglia region.  It was only a 2-man job, nothing big, with a reporter and a cameraman and took less than an hour from top to tail.

Interestingly, I didn’t feel even a touch of nerves today, which I normally get before any of the interviews I do, so I am forced to assume that my brain and nerve-ometer have come to the conclusion that once you’ve done live Radio 4, taped local news is nothing to be bothered about.

Not that I’m complaining at my head’s somewhat pompous stance – it makes interviews a whole lot easier and less tongue-twisty if you’re not feeling the nerves beforehand.  And in fact today I felt I gave on of the best interviews I’ve done – I covered all the bases clearly and succinctly and gave them lots of material to cut around, depending on what angle they wanted to take.

I was even pretty pleased with the final version which went out on in the 6.30pm programme tonight – it managed to put everything across well and didn’t rely too heavily on the kind of news-package cliche  coverage that usually gets shot for PWCF, although we did have to have the inevitable nebuliser shot.

The rest of the day has been spent trying to chill out and rest up in the hope of making it to Birmingham for the Live Life Then Give Life event in Victoria Square in the afternoon.  It’s frustrating not to know whether I’m going to be able to make it or not yet, but I can’t commit to anything when I have no idea how I’m going to feel from one morning to the next.

Most of the afternoon has been fine, although this evening my chest is feeling a bit tight and grumpy, so it’s anyone’s guess how I’ll be in the morning.  I’m hoping that it’s just a bit of tiredness creeping in and that once Neve takes over the leg-work of breathing for the night, I’ll be set for a trip out tomorrow.  We’ll have to wait and see.