Archives: Media

We’re 5 days out from Laughter for Life and things are gathering pace with alarming speed.  It feels constantly like there’s a thousand things to do for us to be ready on time, but actually, when I sit and analyse where we stand, there’s really very little to be done.

It’s reassuring (in a sense) to think that the night could actually go ahead and probably run perfectly smoothly if we all completely stopped working now and did nothing until Sunday.  Of course, that’s not going to happen – we’re all far too commited to making this night the best it can possibly be – but I think it may serve well to remind ourselves as we fret over the final details that actually the leg-work is behind us and we’re now adding the icing/gravy/hair gel/anaolgy of choice to an already fab night.

Today was press release day and with the help of our awesome PR-guru Paula, who’s done a whole heap of work for Live Life Then Give Life in the past, we’ve mailed out press releases to local and national media.  I think the naitonal ones are due out tomorrow morning, but all my local ones have gone today, so I’m hoping that tomorrow and Thursday should be full of phone calls and sparked media interest.  We’ll have to wait and see.

Also today, we’ve made great strides in gathering some great lots for our auction which is taking place in the VIP party afterwards, which include some signed Might Boosh stuff, a raft of Theatre tickets with accompanying bonus features which are still being pulled together through various wheeler-dealings around the place and some great pamper packs and treatment sessions and some awesome original artwork.

Emma is really struggling with a new course of IV’s, which is incredibly rubbish timing for her, but goes to prove that CF pays no heed to any other masters and will wantonly and brazenly do whatever it can to intrude on life.  But, she is showing the classic resiliance of all PWCF and not letting the little bugger get in the way.  “Chest infection? Pah!  I laugh in your face! You shan’t stop me!”

Patrick, from Bill Bailey’s management agency is being a total legend in helping us get things squared away and sorting last minute bits and pieces with us and Steve from Tin Racer, who do all the artwork and design for CF Talk is ploughing through preparing the programme for the evening for us.

It’s amazing how helpful and kind people have been in coming together to make this event happen.  People have given us things, offered extras, consitantly gone the extra mile and done whatever they can to help us along, with goods, services, money or support.

It’s amazing to see just how much goodwill there is in the world and a sobering thought when you consider the cynical times we live in.  People seem to expect so little of other people and often assume the worst.  What I’ve found throughout the last six weeks or so that I’ve been fully involved with this as a project is that people are far more ready to support and help people than I would ever have expected.

I’ve always prided myself on thinking the best of people and often wondered if I’m being just a little naive in my belief in the goodness of the human race.  But this project has taught me to stick to my guns even when the world around me is presenting a universally cynical view of itself through the press and TV – people are fantastic and if you give them a chance, they will bend over backwards to help you out.

There is no way this night would have been possible without the MASSIVE assistance of a huge number of people and each and every one has made contributions that could have stopped the whole show in its tracks.

This is more than just a gig: it’s a chance to tell a whole new crowd of people about the importance of organ donation.  But more than that, it’s reaffirmed my belief in people and it’s also given me the confidence to believe that if I want to do something, I really can do it.

Five sleeps and counting until the night of the year so far!

I’m always loathe to jump up and down and rave about having a good few days without any enforced bouts of bed rest.  Well, let’s face it, I’m always loathe to jump up and down full stop any more.  All right, I’ve ALWAYS been loathe to jump up and down.  Even when I could.

Still, it seems that the last few days have been particularly encouraging for me – a full day’s shooting all day Saturday, a nice, restful Sunday which still managed to include a trip to K’s parent’s for a lovely Sunday/Brithday lunch for her Mum and a middlingly-active day today getting K sorted for her new job and fixed up with sexy new specs.

I seem – seem – to have found a nice equilibrium with my energy levels for the moment – succeeding in balancing a need for restful periods with achieving the most important goals of the day without running myself completely into the ground.

I’m hesitant to be fully excited until I get a couple of days further into the week with no repercussions, but so far, so good.

The day’s shooting on Saturday was really good fun.  Although we had quite a bit of time pressure to ensure we were out of the public areas of the Theatre by the time the matinee audience came in, we actually got all of the stuff we wanted relatively quickly and with very few hiccups.

We did, unfortunately, realise later that we’d miss-shot one scene and made a fatal error known in the trade as “crossing the line”.  This is far too hideously boring to explain in full to anyone not familiar with the term, as it’s a bit of a pedantic, anally retentive technical thingy to look out for, but unfortunately it’s one thing that can completely ruin a film when it’s all cut together.  Most of an audience would never be able to point it out, but would undoubtedly know there’s something wrong with what their watching.

Luckily for us, the scene in question with the minorly-major technical hiccup (or f**k up, depending on your view) is one which we still have to shoot a couple of additional shots for, so shouldn’t be too much of a problem to go back and rectify.  Fingers crossed.

Today I spent another morning in front of a camera, this time giving an interview for a student film for Bournemouth  University’s journalism programme about transplant and life on the list, as well as what can be done to increase donor rates.

It’s nothing major, but I was put in touch with the filmmaker through UK Transplant and as I said at the time I agreed to it, any publicity is good publicity.  I think it’s particularly good because there’s a chance it’ll be seen by a good number of students at the uni and that the message it sends out will get through to one of the most campaign-aware sectors of the population.

There’s huge amounts of resources sitting around university campuses in way of students who can be incredibly vocal about any subject close to their heart.  Make just a few of them aware of the importance of having people signed up to the organ donor register and there could be a whole new wave of Live Life Then Give Life supporters coming through the system and shouting louder than we have before.

Arrangements continue apace for Laughter for Life and I’ve spent a large chunk of the day on the phone to various people and rapidly swapping emails to finalise press strategy for the week, with local MK releases going out tomorrow.  Our national campaign should begin in earnest this week, too, although we’re a little disappointed that Bill’s not able to help us with shouting from the rooftops due to his already manic schedule.

That said, we’ve got an entire 3-hour gig lined up for Sunday night with some of the countries top comedians donating their time for nothing and for which we’ve already sold out a 600-seat Theatre, so it’s pretty hard to be unhappy about anything!

Here’s hoping the rest of the week stays as smooth as today.  We’ve got a few auction lots to finalise and gather, as well as the press and media work to cover.  I’ve got some technical gubbins to double check and artists to liase with.  We’ve got an auction to plan and sales to figure out, and I don’t even know what I’m wearing yet!

Gosh, it’s all go!

Today has been much better – certainly a little more stable and les energy-crazy.

I have taken what struck me as a very sensible and mature decision at the time to not accompany my parents and K to the Theatre tonight in light of the fact that we’re shooting for the Youth Theatre film all day tomorrow.

With my energy levels being as unpredictable as they are, it’s clearly a good idea for me to rest up today (tonight especially) and make sure I’m on top form for the shoot.  It’s a bit of a drag and I know K would have mucch preferred that I was there, too, but if I’m going to get out of my vicious circle of lustre-lacking, then I’m going to have to make unhappy choices now and again.

It feels like we’re accelerating incredibly quickly towards Laughter for Life now – it’s just 8 days away, which seems insane.  There still seems to be a remarkable amount to do but while I would normally be ever so slightly panicked by now (well, a little) I actually feel confident that this is all going to come together and pass off marvellously.

It’s promising to be such a fun event, with such great support and we can only hope that not only will everyone have a great time on the night, but also that we manage to really push people’s awareness of Organ Donation, whether through people’s attendance at the show, or through the press and publicity the event gets.

It feels a bit odd going into the week before the show being really aware of all the avenues of publicity we’re still pursuing – both locally and nationally – but with nothing yet confirmed.  My diary for next week is pretty empty at the moment, but it may well start to fill up rather quickly from early on Monday, when press releases and things go out and we really hit the campaign trail.

Of  course, it could be that none of it comes off at all and we end up with next to no coverage, but let’s hope that’s not the case.  Even if we don’t get as wide coverage as we’d hope for, the main thing is the event itself and the money it’s raising to help transplantation in the UK.

It’s going to be a hard week this week, balancing the work that needs to be done with the rest that needs to be had to make sure I’m in top form for the weekend and the night itself.  It’s going to be a long one, and likely a hard-working one, too.  But it’s also going to be one I won’t forget for many, many years to come.

I’m thoroughly confused.

I should be used to being confused by my body by now, I really should – nothing should really throw me about it’s day-to-day fits and wobbles and ups and downs. But somehow I just haven’t got used to the unpredicability of it all.

Take yesterday, for instance: after a really rather awful, moody, tired Sunday, I slept averagely well and woke up at 8.30am full of energy and enthusiasm and raring to go. I actually wanted to eat breakfast, which is something almost wholly alien to me, since my appetite doesn’t usually kick in until mid-morning at the earliest, so the extra energy boost was great, too.

I spent all morning ploughing through mountains of work and knocking things off my To Do List left, right and centre. I amazed myself at the speed with whihc I rattled through all the things I wanted to get done and I’d almost achieved everything by midday.

I felt entirely un-guilty about taking some time out in the afternoon to pop over to K’s brother’s to play with the little ones – one of whom has just discovered how amazing it is to be able to propel yourself towards whatever it is you want. I wouldn’t so much call it crawling, just yet, it’s more like commando-crawling as he doesn’t appear to have worked out that using your legs can help, but he’s on the cusp of a major revelation, that’s for sure.

Back home after an hour of fun and games (OK, an hour of sitting on the floor playing with Fifi and her Flowertots – don’t ask me who they are, we were just sticking them to the magnetic board….), I settled in to polish off the rest of the pressing bits and bobs which needed dealing with before close of play, then settled on the sofa to watch some TV and hit the sack.

Now, today, after an identical night’s sleep, with perhaps an extra hour in bed, I have managed to achieve almost nothing. Since getting up this morning I have felt entirely drained of evergy, lacking in any kind of resource to keep my eyes open and my brain switched on.

Compared to yesterday, I’ve got next-to-nothing done, although all the important stuff has actually been dealt with, but I had to go back to bed at lunch time and it’s really only since taking K to college this evening and sitting back at my desk around 6pm that I’ve been able to engage myself to do anything at all.

It’s immensely frustrating because I just don’t know where this energy-drain has come from. I seem to be yo-yo-ing up and down from day to day with little or no reason behind the ups and downs.

I remember saying here previously that I’d be OK with it all if it made sense and was plannable, but it’s impossible to know what each day is going to be like at the moment and I can’t work out whether it’s OK to plan things or if I should just wipe my diary and play each day by ear.

I don’t suppose I can really start doing anything differently, other than, I guess, be strict with myself at stopping when I don’t feel I’ve got the energy and making sure I rest myself when my body says no. But when you’re trying to plan for a major event just 10 days away (how exciting!), it’s frustrating not knowing how much you’re going to be able to do all day.

Still, all moaning aside, I can’t really complain about today because I did get to further explore my media-tart side of my personality with a live phone interview with Peter Allen on Five Live Drive for the BBC this evening.

The wonderful Fi Glover, who’s Radio 4 show Saturday Live I did a few weeks back, passed on my details to the editor of Drive and, sure enough, I got a call at 11am this morning to talk about things and asked if I’d come on the show live this evening at 5.25 – pretty much prime time.

It was a bit of a tough interview because, obivously, I was mostly interested in plugging Laughter for Life and transplantation, but it seemed that they were more interested in the CF angle of things. Which was nice but, you know, not really “news”… Still, I managed to get through all the CF awareness stuff, plus a plug for the gig, plus a load of awareness raising for organ donation AND a mention of the Live Life Then Give Live campaign. Not too bad for 3 minutes air time, I thought. Even if it did involve a little bit of talking over Peter Allen as he tried to interrupt…

So the publicity machine ploughs on and the date of the show gets ever closer. Things get more exciting by the day and I’ll be sure to post updates on here as soon as I get them. hopefully, I’ll have more warning of the other interviews and things I’ll be part of, which will mean I can put heads-up posts on here ahead of time.

A while back at the start of the year, I was sent an email by the press officer at the CF Trust asking if I’d be willing to talk to Radio 4 about my diet and having to take on an inordinate number of calories everyday.  Being the self-confessed media tart (MT) that I am, I nearly bit her hand off.

Having spoken to one of the team on Radio 4’s Saturday Live show, I was told the following day that they’d decided not to go with that story, but that they’d keep my details on file for the future.

I didn’t realise that meant a matter of weeks – just last Thursday, JP from the show called me back to see if I was free to come to the studio in London to do a segment on the same subject with presenter Fi Glover and stick around for the whole show.

Excited doesn’t quite cover it from my side of things – I love the media: TV and radio have always intrigued and excited me and to think that I was stepping up for 2 minute 2-ways on local BBC 3 Counties to a show that people had actually heard of was unbelievable.

So I roused myself at 5.30am on Saturday morning and stumbled around to do my morning dose of IV’s before I left for the studio in my Dad-powered taxi at 6.45am.

I did manage to dose on the way down a little bit, but arrived at Broadcasting House – yes, THE Broadcasting House!!! – at 8.15am feeling every so slightly very nervous.  I’ve got so used to doing local radio and press that it didn’t occur to me how nervous I was going to get going on a big national radio station.

As it was, the whole thing was fab.  I was on the show with Fi, the presenter, the regular poet they have on every week, who was a really good giggle and an Asian music producer who was fascinating to talk to and is doing some really interesting work in fusing musical sounds and styles from all over the world.

My section of the show – which I think ran about 10 minutes, although I totally lost track of time – went really well, although I was annoyed with myself for tripping over my tongue at the beginning.  I covered all the bases they wanted covered for the piece and even managed to get in a plug for Live Life Then Give Life and organ donation in general.

The show is up on the website on listen again all week, so check it out – I’m  on from about 5 minutes in.  Click here.

Further to the on-air discussions. though, I also got chatting to Fi after the show about Laughter for Life and she has promised to help out with publicity if she can – passing our details to a FiveLive producer and to the London Radio listings people, which should carry a bit more weight than just randomly attacking them with a press release.

As exciting as it was, it has also made the start of IV’s even tougher going, since my body disagrees mightily with Meropenem anyway (the drug I’m on) and  adding into it early mornings and irregular sleep patterns doesn’t help.

I know I’m going to have to take a few days to recover, but annoyingly, it’s hard to tell how much of this is IV-related and how much is down to over-work/exhaustion.  If I knew that, I’d be able to look after myself a bit better and space my workload, but as it is I have to assume the worst and take it as easy as I can for the time being till things pick up again.

Still, I was on Radio 4!

Anyone watching last night’s edition of Watchdog would have seen the BBC taking Allied Respiratory to task for their abject failures in the oxygen delivery system – which you may have read me blogging about in the past.

You would also have seen that doyen of small-screen campaigning, my good friend Emily, performing admirably in berating the oxygen companies whilst simultaneously looking gorgeous and intelligent at the same time.

Frankly, there was very little of substance to the programme by way of solutions, but it was invaluable to help highlight the problems that oxygen users are facing and the poor job that Allied have been doing.  It was telling that they didn’t send anyone along to the programme, simply supplying an apology statement.

To this end – although not related to the Watchdog programme itself – I’ll be going along to a meeting at the end of the month with the Chief Exec of the CF Trust at the Department of Health along with representatives of Allied.  Although pwcf are not the only ones who depend on oxygen delivery, it plays a significant part in many of their lives and any benefits or progress we can make on our behalf will only serve to benefit others as well.

Of course, it should really be Em’s realm to follow up her campaigning for better oxygen provision, but as we are all so wonderfully aware, she is otherwise detained at the moment!

Speaking of which, by way of an update – Emily was taken off her ventilator yesterday and is now breathing on her own with her bright, shiny, clean new lungs!! Hooray for her and here’s to many more years of happy deep breathing!

Today’s been a really good day for me and I’m really pleased with myself for it, too. 

Yesterday, apart from slumming it on the sofa trying to urge my chest pains to go away, I spent the afternoon writing another article for the Guardian’s Comment is Free site – this time about Transplantation.

Em and Em, the partners in crime behind Live Life Then Give Life (from whom you should all have bought a T-shirt, not to mention signed up to the Organ Donor Register), organised another big publicity push for Christmas, which I sadly missed out on because of all my recent email hiccups and account confusions.

So, in order to still be doing my part, I mentioned the campaign to the guy who’d contacted me about writing my previous article to see if he was interested.  He said he was, so I spent the afternoon writing up a general summary of the status of transplant in the country and the various different systems around the world.

What I’m most pleased about it that he particularly wanted to stir up a bit of debate about the subject and if you go and check out the article online (here), you’ll find a lively exchange in the comments section underneath, which is really good to see.  Except maybe for the comment about my hair…

After being in the study working all afternoon, my chest was protesting a little again so I stayed on the sofa watching a movie in the evening and headed to bed at a sensible time. 

Better than anything was the fact that I got myself comfortable (not always possible with chest pains) and slept solidly through until 11am this morning – 12 hours sleep being something I’ve not enjoyed for as long as I can remember.  It was blissful to wake up and discover I’d been out like a light all night.  And it’s really recharging, too.

What I’m most pleased with today, though, is that I’ve stayed true to my promise to chill for the next few days before Christmas and have done very little again today.  I’ve been massively helped by the fact that I’ve had friends round to see me most of the day, which is good for sitting on the sofa chatting and not having to move or do other things.

But I’ve also been really good at doing physio sessions and stopping myself from “popping out” or sitting in the study at the computer for too long, or at the table in the kitchen reading the paper – all of which have a tendency to put extra strain on my chest and induce pain here and there.

Fingers crossed, I’ll be able to carry my discipline over to tomorrow, when I’ve got a little more planned, but am hoping that when I’m not out of the house, I’ll either be in bed or on the sofa doing nothing at all.  And K’s back from her parents’ tomorrow afternoon, so she’ll be around to police me.

Quite before the media maelstrom that’s been hurtling around today, I spent almost all of yesterday feeling absolutely awful.  It’s remarkable when I look back with all the things I’ve done today that I wouldn’t have been able to even touch on today. 

In all since 7am this morning, I’ve done 3 phone interviews, 1 studio interview, 1 photoshoot and written a 700-word article for the Guardian website.  This time yesterday I was sat on a ward in Oxford hoping to goodness that the docs weren’t going to put their foot down and keep me in.

Yesterday morning I woke up with the worst headache I’ve yet experienced, all thanks to the veto-ing of my NIV due to the pneumo scare.  Not only that, but the CO2 levels in my blood had obviously started to cause havoc elsewhere and I found myself lent over a toilet bowl 5 minutes after waking up depositing whatever was left in my stomach from last night.

I haven’t been sick in a very long time, and I’d forgotten how unpleasant it was.  not only that, but without oxygen on, it left me gasping for air. 

I manged to find my way back to bed and do my IVs, which took a lot more effort than usual, and got pain killers down me with a banana to try to settle my stomach and help them absorb better. 

We had to leave the house by 9.30, so I forced myself up and out of bed, but my head was swimming.  Of all the things I’d meant to do before heading out, I accomplished at most 2 of them, and then only half-heartedly.

At Oxford, I had a session with my physio which saw me bringing up some of the nastiest stuff I’ve seen come out of me for a while.  Not only that, but my headache was refusing to go away and my exhaustion was creeping up fast.

The docs came round after my physio session and we discussed the pneumo/chest pain.  Considering I had a good night’s sleep (barring the morning doldrums), and the pain seems to have gone away in my chest, it would appear that it wasn’t a pneumo after all, just me jumping to not-entirely-illogical conclusions on feeling more acute than usual pleuritic pains in my shoulder.

We decided that the IVs clearly hadn’t done the job they were meant to, and so I’ve been put on an additional drug to marry with my Colistin, Meropenem.  Usually, Mero causes me severe joint pain, but we discovered last time I took it that combining it with steroids was usually effective in taking that element away. 

The only draw-back being once steroid leves go over 10mg (I’m now on 20mg) transplant becomes less likely, for various medical reasons too detailed to go into here.  But it’s only for two weeks and it’ll hopefully improve my lung function and exercise tolerance, so it’s got to be worth it.

Eventually, after a supervised first dose to make sure I wasn’t going to have a massively adverse reaction to the Mero, I got away from Oxford (chauffeured by Dad) just after 2pm, getting back home around 3.30pm in time for some shut eye before heading out again to stock up on portable oxygen cylinders from my stash at the flat.

After a “who’s got the keys” palaver of indeterminate length, we eventually got back in around 7 pm and I was shattered, completely exhausted and good only for sitting on the sofa and wiping out.

Although I did get a bit of a second wind in the evening, around the time Em phoned me to talk about the news and the reactions on the message boards, I was still in bed as early as I could be.

The most important part of my day, though, was in the change of stance on Neve, now that the pneumo had been discounted.  Going to sleep with her on, I drifted off into the land of slumber and only woke on a couple of occasions before my early-morning radio address.

It was remarkable and wonderful to wake bright and alert and with no discernible left-overs from a proper night’s sleep – no headache, no sickness, no nothing.

It’s paved the way for a wonderfully busy day, all of which has taken place within the confines of the house, with the exception of a quick trip up the road.  I’ll be back on here later, with a bit of luck, to outline where else you can see my distinguished self discussing life with CF and other interesting topics of the day…

Updated 01/12/06:

After a breathless day-and-a-bit of media storms, between myself and fellow CF Trust Ambassador Emily we have notched up 4 print articles, over half a dozen radio interviews and she bagged all the Telly attention (but then, she is prettier and much more of a draw than me…), not to mention the rest of the CF community’s coverage, which has included local news country-wide, This Morning, Newsround and forthcoming features in the Daily Mail other weekend magazines.

Articles featuring Em and/or I are available at the Guardian, Herald, Independent and Mirror and Emily also gets a mention on Nick Robinson’s blog on the BBC website.

Articles have also appeared in the Scotsman and Evening Times for our Scottish Brethren, thanks to work from Anders, a North-of-the-boarder friendly-type.

It’s certainly been an interesting last 12hours.

Following the announcement last night that Gordon Brown’s 4-month old son, Fraser, has been diagnosed with Cystic Fibrosis, I’ve already done three breakfast radio show interviews – 2 on the phone for BBC 3 Counties Radio in Luton (Beds/Herts) and BBC Radio Berkshire, and one in the studio for BBC 3 Counties Radio in Bucks, which happens to be just up the road from my Mum and Dad’s house where I’m holed up at the moment.

I first heard the news when Em phoned me last night and told me about it.  It must be horribly upsetting for the family, especially having it “outed” as it appears to have been by a Sun scoop.  But they seem to be dealing with it in the best possible way, staying upbeat and positive and looking towards the future with hope.

And there’s no reason for them not to.  With Fraser being diagnosed at birth and going straight onto a regime of necessary treatment, there’s no reason to think that he should be capable of having a really good stab at a normal life.  With the Gene Therapy trials just around the corner, babies being born with CF stand an infinitely better chance of leading a full and happy life than ever before.

Support for the Brown’s from the CF community has been over-whelming, with the message boards on the CF Trust inundated with parent’s and PWCF leaving messages.

I was woken this morning at 6.45am by a call on my mobile, which is always on because of the possibility of a transplant call, and a researcher from the BBC asking if I’d do a phoner for them at 7am.  Bizarrely, I agreed and while I was on the phone to the studio giving them my best “CF’s rubbish but the Brown’s needn’t be all blue” I had a beeping in my ear from the other branch of 3 counties and a voice-mail left to call them.

No sooner had I come off air from my first interview (where I’d actually managed to leave the presenter speechless – go me!) than I was arranging an 8am studio visit for the MK branch of the breakfast show, whilst getting a call off a producer with Berkshire who is engaged to the first researcher I’d spoken to who had obviously relayed my performance just minutes earlier.

60 seconds later I was doing my second phoner of the morning and within 5 minutes was back off the phone, lying in bed and drawing up my morning dose of IVs.  Having administered them, I got myself up out of bed and dressed as quickly as my puffy little lungs would allow and jumped in the car with mum to trundle up the road to the Bucks 3 Counties Studio, where Martin Coote does his breakfast show that I’ve visited twice before.

This time I dragged Mum in with me and she gave a great account from a parent’s perspective, before I filled Martin in on my current situation and even managed to get a plug for the Live Life Then Give Life campaign in, which was a bonus!

I was back home by 8.30am having pretty much not stopped since the first phone call this morning.  I’m now starting to feel the early morning slightly, so it’s off to the sofa for me and – maybe – a bit of extra shut eye.