Archives: Media

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.

As you may or may not know, next week is National Transplant Week, throughout which lots of various things will be happening to raise awareness of organ donation and suchlike.

Tomorrow morning I’m being interviewed by BBC Look East and the piece should run as part of their 6.30pm main evening news, all things being well, so those of you in the Eastern region, keep your eyes peeled for that.

With luck, I’ll have more media stuff going on throughout the week, too.  The local papers will pick up my story again, I hope, and also perhaps local radio, too.

Nationally, look out for Emily on Richard and Judy during the week, as well as a friend of mine called Robyn who will take Emily’s place on the GM:TV sofa as resident PWCF awaiting transplant – naturally I’d have been up for it, but I’m not a pretty girl, so I think that ruled me out…

For more information on Transplant Week, check out the Transplants in Mind and UK Transplant websites, as well as our very  own Live Life Then Give Life campaign, through which we will be targeting a whole host of local media across the country, and hopefully some national media, too.

So keep your eyes peeled in your local press for pics of attractive young people sporting their Live Life Then Give Life or their I’d Give You One T-shirts – and spread the word about organ donation to all around you.

I’ve been wading my way through quite a bit of TV drama of late, spurred on by positive reviews in the press of all the new things like New Tricks, Hustle, Kingdom et al, and have found myself almost constantly disappointed.

There’s just something terribly formulaic and dull about British TV drama where it pales in comparison to even the most ropey of American TV product. There’s just a slickness and a freshness to the US output which I find myself yearning for whenever I park myself in front of the telly for the new “best thing” on our screens.

So thank goodness for David Suchet, Craig Warner and Colin Barr – the star, writer and director respectively behind Maxwell, last night’s dramatisation of the last days of the life of Robert Maxwell.

Not only was it brilliantly scripted and performed with a tour de force from Suchet, Barr’s direction and the immaculate and very filmic camera work really set the whole thing apart from the usual hour-and-a-half one-offs that we get over here, and puts it in a whole different league to the dull, lifeless weekly dramas we get over here.

I don’t know if it’s to do with the time constraints imposed by low budgets, or a dirth of creativity within the industry at the moment, but every drama programme seems to follow the same visual formula and the same stodgy editing techniques which seem to be turning a very visual medium into a close-up-ridden copy-cat of a good night at the theatre, but sadly lacking the good scripts and – all too often – the performances.

I yearn for a bit of directorial freedom, to see talented people take the scripts that are there (which must be dramatically improved, if you’ll excuse the pun) and turn them into their own films, not the cookie-cutter rehash of last week’s episode.

I understand that within a series there has to be continuity, and that there’s an accepted way of going about doing things, but when anything artistic reaches a status quo it rapidly loses merit.

It doesn’t seem any wonder to me that Channel 4 and ITV and Five are tripping over each other to buy up American drama for over here – and apparently making big mistakes while doing it, according to the press this week – because they simple can’t rely on this country turning out enough drama of quality to fill their schedules.

If we could only produce drama good enough to entice and intrigue and audience, perhaps we would see broadcasters relying on hideous grotesques in “reality TV” to fill their schedules and boost their ratings.

It’s about time we had something to shout about, and Maxwell is certainly a stonking start.

You know me – I’m really not a mean and nasty person, and they say you should be careful who you tread on when you’re going up lest you pass them again on your way down.

Since I very much hope I’m still on the way up, and since I very much hope that I’ve got lots more publicity left in me, I’ve ducked my head back below the parapet and removed all references to the exact publication I was referring to yesterday.

I know, I know, I’m weak and feeble and shouldn’t give a flying one about what people think of me, but the way I look at it is this: in the coming months I’m going to be looking to do a lot more awareness raising of Transplant and Organ Donation and I want as many people on-side as possible.  Surely a petty (albeit nicely amusing) rant about the quality of a paper’s stories shouldn’t get in the way of that.

At least now they’re not likely to find it on a random google search of the name and I shouldn’t find myself blacklisted next time the wonderful Paula sends out an immaculate press release she’s authored on my behalf.

I shudder to think of the low esteem some fellows writers and bloggers would feel about me reading this, but I suppose that’s just who I am – I need to be liked by everyone because I’m a very insecure and shallow person.  So there.

On the up side, I’ve had  some great ideas for promotion and publicity as well as a few short films and other projects I might just have on the burners right now.  Who knows what’ll become of them – and I’m not going to detail them here just yet, because we all know what happened last time I did that – but we’ll wait it out and see.

The sun took a long time to come out today.  I’m hoping it does better tomorrow.

Some days are easier than others, that’s pretty clear after all the months I’ve been scribbling these bits and pieces for myself and whoever happens to be passing to peruse. But while a day may not have been as good as the day before it, at least you can rely on the laughably awful local newspaper to make you giggle through anything.

It is, quite possibly, the worst newspaper in the history of publishing – it would be laughed out of Fleets Street and probably still raise quite a few disparaging chuckles from Sesame Street. It’s pathethic, lazy journalism with hardly a hint of any sub-editing. But boy, does it make me laugh.

Take today’s issue, which landed on my doormat this morning. The lead story was about a pensioner who’s been BANNED from his golf club for using his own buggy. Or at least that’s what the headline leads you to believe. Actually, he’s bought himself a golf buggy to save money on hiring one from the club and they’ve told him he can’t use it because they’re not insured for it.

Laughable health and safety procedures, yes, but hardly the totally-out-of-order disability-discrimination they’re trying to make it out to be. Sure, I feel sorry for the old fella: it’s not cheap to hire buggies. But honestly, it’s hardly the meanest, nastiest thing in the world, is it? It’s a bunch of silly rules which have upset a pensioner.

It gets better, though. How about the article (or is it just an advert) about the new flats going up in Bletchley. With over half still on the market, you too can share the AMAZING views of Milton Keynes from your living room window. It’s even illustrated with a picture of the amazing view: IKEA. Well, IKEA, ASDA, the new footie stadium, downtown Bletchley and some trees. Not exactly the inspiring penthouse vista that you might have anticipated.

I’m consistently amazed and amused at the hilariously low quality of the rag (it really is a rag), and it’s collection of “human interest” stories which get published every week. I suppose I shouldn’t be railing against it quite so much as I have, on occasion, been known to use it myself as a voice of publicity for the various campaigns I get involved in. But even then they managed to spell my name differently in the main article than from the headline. Awesome.

I honestly don’t know if it’s just that MK doesn’t have enough in the way of “news” to make it interesting, or if there’s a genuine total lack of decent editorial leadership, sub-editing or reporting skills, but whatever it is, the paper is worth more as a source of entertainment than as a source of information on the city.

Oh the joys of having very little to do: you do get to see some wonderful things.

Three days and counting and the pace is non-stop.  The great thing about the whole thing now, though, is that we really are just dotting I’s and crosssing T’s on the event itself, plus chasing what media coverage we can over the next few days.

I found myself staring out of the pages of MK News yesterday, in a beautifully placed story on page 5 – sadly, it was with an awful old photo of me from one of the stories they’d run previously when they sent their photographer round.  They also managed to make the simplest and yet most glaring of sub-editing errors by spelling my name wrong in the headline.  I don’t know how on earth you spell it correctly all the way through the piece itself and still manage to get it wrong in the headline, but there you go.

I’ve yet to see a copy of today’s MK Citizen, but I’m hoping I got my ugly mug in there, too.  I had a call from BBC 3 Counties Radio this afternoon to ask me onto their breakfast show with Martyn Coote tomorrow morning, which is great.  I’ve been in there three times before, so they know me and it’s a nice, friendly place to stick my head into.

For those who want to listen, I’ll be on around 9.40am on the MK breakfast show (as opposed to the Luton/Beds/Herts one) which is on 94.7, 98 or 104.5FM or, possibly, at <a href=”http://www.bbc.co.uk/threecounties/local_radio/”>http://www.bbc.co.uk/threecounties/local_radio/</a> – although I’m not sure if this will offer you the option of the MK breakfast show, or just play the other one.

Technically, the show is coming together nicely – we’ve got our follow spot, and our follow spot op.  We’ve got our Stage Manager for the night, as well as a stand-by team of MK techies to help out if need be.  They’re actually paying customers coming to see the show, but I’ve warned them I may need to collar them for a hand during our SUPER-quick get-in on the night.

We’ve sent info packs out to all the acts about the night, with the running order, information on the campaign and general goodies (a pin-badge, no less!).

Most excitingly – and this is the bit that had me doing the closest thing I can to jumping up and down – we’ve secured a 2 tickets to see Avenue Q, the puppet musical in the West End, along with an exclusive, private 30-minute workshop with a cast member to see the puppets up close and learn how they go about bringing them to life on stage.  It’s an unbelievable lot (in my humble opinion!) and I’m so excited about it.

That said, we’ve actually managed to come up with a generally awesome collection of things to auction off at the VIP party – we should not only raise some really good money with the things we’ve got, but also offer people some really exclusive stuff for the cash they’re parting with.

Among other things, we’ve got an original artwork by an artist whose life has been transformed by a double lung transplant, a facial at a top London beauty salon, tickets to no less than 4 West End shows, including super-special extras to go with them, and the ultimate war-fighting day with a company which promises to supercede paintball in both value and realism.

It’s amazing how things are coming together and I’m getting more and more excited by the minute.

It’s going to be an amazing weekend and I can’t wait for it to be here.  Three sleeps till Laughter for Life! And remember, if you can’t be there, but you want to support us, you can donate through our Just Giving page, here.

Blimey, life moves at a hundred miles an hour sometimes, doesn’t it?

A friend asked me the otheer day how I think of things to put in this blog everyday – and I have to admit sometimes it does seem a little pointless to be writing when nothing much has happened.

And then you get days like today, where it’s ALL happened!

It all kicked off at 10am this morning when the phone woke us up.  Until today, I’ve been up and about by 8.30am every day for over 2 weeks – completely naturally, waking of my own accord.  But the first day I sleep in, it all kicks off.

Steve from Tin Racr Design was on the phone, asking if I’d got his proof of the programme through yet, which I had to confess I’d not seen because I wasn’t out of bed.  Hastily rolling out of bed, I plonked myself in front of the computer and checked my mails to discover not just the proof, but also an email from the printers we thought were handling the printing for us saying they could no longer do it.

To say I panicked would be overstating it slightly – I’m not really a panicky person –  but let’s say my calm took a bit of a dent.  Rolling K out of bed, I thrust the phone, a yellow pages and an outline of what we needed into her hands and got her dialling while I jumped on the job of proof-reading the awesome-looking programme.

In the middle of the chaos, other emails kept firing in from various sources, all seemingly demanding instant attention.  I can go days without getting any emails (well, ok, not at the moment) and usually you can sort them into various piles of urgency, but almost every one that came through today seemed to need an immediate response.

Understandably, with all my activity and the prospect of an exhausting rehearsal session at the Theatre tonight still to come, K was getting anxious that I pace myself and make sure I was keeping enough in my tank.

I pride myself on working well under pressure and although I had a couple of moments of dread at points today, I managed not only to address everything I needed to, but also to make sure I had enough time to have a proper lunch and take time to lie down in the afternoon to recharge before work.

As well as signing off on the programme, today has seen me: get hold of a follow-spot for the show, finalise two auction lots, get a sponsor for the programme (the legendary Dunham’s Solicitors in MK), confirm all the technical details with the venue and recruit a stage manager to handle the back-stage organisation for the show (well, nearly recruit, anyway, as it’s dependent on getting hold of someone else first – but we’re nearly there).

Not only that, but I’ve had a three-hour rehearsal at MKT for the Youth Theatre show, including an hour-and-a-half working solely with my three wonderful Hamlet cast members who have taken to the whole thing so much better than I could possibly have hoped.

Shakespeare is not an easy thing to grasp and there’s a lot of nuance and little touches to the text which can take an age to go over and discover in the rehearsal process.  I was so happy tonight to find that the cast have already got a good grasp of the text, but also that they are keen to share ideas and work with me and with each other to find a balance between their characters.

It’s been a long time since I’ve worked specifically as a director in a rehearsal setting and it felt great to be putting something together again – I realised tonight just how much I miss that area of the Theatre and how much more I want to do down that avenue.

On top of which, I also delivered the final part of the piece I’ve written to open the first and second acts of the show and it went down really well with the cast, which is always a good place to start.  I was concerned it might need a bit of redrafting, which would have been a headache considering how limited the rehearsal time now is, but it’s actually looking like it’s going to be OK as-is.

And now I find myself back home in front of my inbox again (with another 12 emails come through since I left the house at 5.30 tonight) and discovering a whole new load of greatness to polish off my day.

We’ve got some really good media interest, which will hopefully convert into coverage, and a few more pieces of the auction have fallen into place – including securing a workshop for people to see behind the scenes on Avenue Q, which I’m so insanely excited about it’s funny.

I’m now tired enough to go to sleep almost immediately, but I’m also pleased that I don’t feel totally exhausted.  I suppose the true measure is going to be how I feel when I roll out of bed and drag myself over to Oxford for clinic in the morning, but I think I’ve got the Big Guy on my side this week and he’s making sure I’ve got the fuel inside to see me through the weekend.

That said, I’m not taking anything for granted: I know I have to look after myself and pace myself or I’m not going to be able to make the most of what’s going to be one of the best night’s of my life.

Four days and counting!