Archives: Day-to-day

So today was the culmination of months of work from on of the LLTGL advocates, Holly Shaw, who’s been taking part in the Channel 4 young people’s campaign show Battlefront pushing Organ Donation. Her campaign – Be A 2 Minute Hero – based on the idea that it takes 2 minutes to sign the organ donor register, the same time it takes to make a decent cup of tea, has really captured the attention of many, many people.

Today alone the online registrations for the organ donor register have increased from the usual average of 200 a day to 3,200! That’s simply insane. It’s one of the biggest jumps the ODR has ever seen online. Not only that but since 1st April, the average sign up rate has risen from 200 per day to nearly 600 per day, another astonishing figure. Of course, the average number increase may be coincidence as it’s not 100% provable, but it’s a pretty staggering coincidence if it is.

Holly has been working incredibly hard for us since before we were a charity so to see her a) well enough, post-tx, to carry out such a massive campaign and undertake such massive amounts of work and b) brave enough to do it all on live TV and recorded for a Channel 4 doc when she wouldn’t even do pre-recorded media when she joined us is absolutely fantastic.

I went down to London after my day on the Easter Project at the Grove (more of which later in the week when I get chance to draw breath) to join the team for a celebratory drinks event to round out the day.

I arrived at 7.30 after a mamouth journey thanks to the frankly apalling service on London Midland, which I won’t get into here because this is a post about Holly and not some total failure of a train company who are staffed by incompetants and provide the worst customer service since Basil Fawlty but without the humour. When I got there the lady in question wasn’t actually there, having been whisked off to the Sky News studios to do a live interview about the day.

This was far from her first media coup for the day, having convinced the Metro to replace the “O” in their masthead with a heart and include a major organ donation story with photo to promote the day, as well as sitting on the sofa with Ben Shepard on this morning’s GM:TV and seeing articles either in or headed for both the Guardian and the Mirror.

When she got back, she also revealed that she’d had a phone call suggesting she look on the PM’s website where, sat at the top of the front page was a headline leading to this article on his support for her campaign. If that’s not a coup, what is?

It was a great evening for mixing, networking and general back-slapping for Holly and her Battlefront team, including Emily from LLTGL who provided invaluable support both in kicking the campaign off just after Holly had her transplant and latterly in seeing the Donor Day through with her all day in Canary Warf.

Holly’s Helpers all over the country set up Donor Desks in their local areas and the numbers from NHS Blood & Transplant go to show just what a difference they all made. It’s an astonishing achievement and I for one am hugely proud.

So, if you’re not already, stop reading this and be a 2 Minute Hero – put the kettle on and sign the organ donor register. Now.

Up at 5.45am as per usual again today – it’s been nice to have a little while off early mornings. Got K to the station then despite the early wake-up I was feeling energised and motivated enough to sit and plough through a wapping 26 pages of the new screenplay, bringing me within about 10 pages of hitting my self-imposed 1st April deadline.

I’m really quite pleased with it all, too. It needs going over and refining, but all first drafts do. The crucial part is that a) I’ve got it down on paper how I saw it in my head and b) I’m actually pretty happy with what I’ve written. Just have to see if I can finish it off now.

The rest of the day was spent catching up on the weekend’s emails and other correspondence. I’d managed to keep away from the computer the whole time which was actually really refreshing. Saturday we chilled at home all day – another total and rare blessing – and then spent the evening with Gramps at the ‘rents. Sunday we chilled in the morning before I headed to work, then got dinner and chats with Gramps again before they leave tomorrow, although it wasn’t a late one as we were obviously both up early-doors tomorrow.

After all my brother’s exploits in the Sun last week (see this article and it’s related links. He’s the dude in the goggles in the pic, plus featured in many of the videos), I got a call from him this morning to let us know he’s on his way home this week.

While that sounds like fab news – and for us, it is – it’s actually really gutting for him. It seems he’s torn the ligaments in his ankle playing some post-ops rugby in camp and now can’t stay out there for the week or so of wrap-up session they’ve got and then their wee company/commando jolly to Cyprus on the way home. Instead, he’s trying to resist letting them put a cast on it and eyeing a spot on the AeroMed home this Thursday. Like I say, fab news, but gutting for him.

Up again around 8am – second lie-in in a row! – and ran K down to nursery before popping in to see a friend who’s right at the end of her pregnancy and trying desperately not to let Baby come along yet. She was feeling awful today and really struggling, but she’s almost full term and there shouldn’t be any issues, which is something I tried to reassure her of.

I ran home quickly before popping down to the nursery to film an interview with K and the nursery manager for her course, which she then has to come home and edit into something coherent for her tutor to observe her clinical practice. Or something.

Had a look around the nursery, too, which is absolutely lovely. It’s a private nursery just down the road from where we live and it’s so beautifully set out with so many stimuli for the children. I dropped in on the babies (3-18 months) who were all unbelievably cute and gorgeous. The nursery itself is a large private house that’s been converted for use and the back garden is jam-packed with awesome play equipment which really let’s the kids throw themselves around and have fun.

Popped home again (lots of popping today, clearly) for half-an-hour before going back to collect K and coming home to polish up the multi-media stuff for the Royal’s scratch performance tonight, when I’ll finally get chance to see the whole piece as one and work a little on the timing of the various elements.

The majority of the afternoon was spent between Photoshop and Final Cut Pro, making logos and composites in the former and editing together a montage of war footage in the latter, all of which went pretty quickly and easily, to my surprise. I wasn’t sure I’d get it all done for the rehearsal/performance tonight, but in the end I did it fairly comfortably, which I was really chuffed with.

Headed to Northampton and dropped K at her appointment, then went on to catch up with a couple of friends I’ve not seen in ages. Suze, who I’ve worked with extensively for nearly 8 years, gave me some really good ideas of how to try to engage the Youth Theatre groups we’ve been struggling with recently, which I’m hoping I’ll be able to put into practice over the next term to try to pull the young people into the sessions and get them to engage.

After a quick coffee and catch-up, I moved on to the scratch performance, which started a little late but was hugely useful in working out how and when my pieces can slot in most unobtrusively, in order to best support the work that the group are doing on the stage.

Late start meant late finish again, getting away from the Royal around 9pm, which was quite a bit later than I’d wanted to get out, then picked K up from her bro’s house where she was babysitting while our niece was out with them for her birthday meal. I did get to see J, though, to wish her a happy birthday, which was really nice because I wasn’t expecting to see her.

Dinner, then, was incredibly late, getting home as we did around 11pm, which then meant I wasn’t getting to sleep until well after midnight as I was wide awake from the food. Ho hum. At least I get a proper lie-in, veg-out session tomorrow morning. Bliss.

Between organising some other bits and pieces today (and having a “lie-in” until 8am) I spent a lot of the day putting together the multi-media stuff for the Royal’s New Connections project, which was quite good fun.

In order to get it all to run properly and easily for the technicians operating it on the night, the best way of working it is to put it all into a Powerpoint presentation, which can then either be automated or run with single-push button progression. The only problem with that is that I absolutely hate Powerpoint. Apart from anything else, it’s so inflexible – there’s so many things I want to do with the transitions and other things, but you have a choice of 3 or 4 options which have no adaptability and no ability to customise them to your wants/needs. Frustrating to say the least.

In the evening I headed into MK Theatre to talk to their script writing course writers about possibly directing a show-case of their work, or part of it. Not sure if it’s going to work out with my dates and availability at the moment, but we’ll see if we can make it work somehow. It’d be great fun to work on some new pieces, but also educational to work with new writers on the first performances and developing/evolving the script.

Hurriedly rushing off from there, I headed over to Northampton to the Royal for their last rehearsal before the scratch performance of their piece for the National tomorrow. Frustratingly, they didn’t get around to a full run-through as the stagger-through took too long, which meant I didn’t really get to look into the timings for the piece, but I did at least get to sit down and go through the presentation with the director, who was very complimentary and had a couple of notes for me to take away.

A later night finish than I’ve had in a while, not leaving until 9.30pm, but it actually feels pretty cool to be back and involved in some proper live performance – something I’ve not really done for almost 3 years now. Exciting stuff.

As part of what I think industry and teaching call “continuing professional development” – in other words, learning new stuff – I spent my day today at the Castle Theatre in Wellingborough training as an Arts Award adviser.

Arts Award is a qualification that young people from 11-25 can take which can not only help boost their confidence and push them out of their comfort zone, but also, potentially, set them up for moving forward with a career in the arts. Encompassing all art forms from theatre and film to stone masonry (really), young people can do projects on Bronze, Silver and Gold levels to achieve certificates which will doubtless then carry weight with applications to Arts colleges, universities and – potentially – lead to avenues for employment.

It’s a great scheme and a really exciting thing for me to be able to deliver. Initially, I’m looking to set up a scheme within the Grove in Dunstable, but I can also register myself as an independent centre meaning I can run and assess young people on the award independently of a venue. It’s a great string to my bow and could open a lot of doors for me.

Yesterday I ploughed through a huge heap of work and finished off very proud of myself for getting through my to-do list, then had a really hard session at the Grove with the Youth Theatre. There are two participants who are really hard to engage and it’s totally baffling me – I don’t know what to do to get them into the fold. Having tried just about all areas of drama this term, the other practitioner in the sessions and myself are at our wit’s end trying to find out why they come and what they want from the sessions – it seems impossible to please them.

On a brighter note, the rest of the group really enjoyed it and seemed to get a lot out of it and we got some really good feedback to signpost where they’d like to go next term, which makes things much easier for us in eliminating the guess work from the planning process.

Got back and chilled out with K watching some random TV as she unwound after her exam which , after considering she’d probably just about managed a pass with 50%, she rocked up to uni today to discover she’s got yet another 1st. Can people please comment on here to show her that she needs to stop underestimating herself and realise that she’s actually pretty damn clever. Enough said. Love you.

I’ve been kind of promising myself a day off for quite the little while now, but not until today did I actually give myself one. Acutally, it was entriely unintentional. I looked into my diary last night and realised I had nothing booked in for the day – in itself something really rather exceptional – and when I woke up this morning, perched with laptop on the sofa bed (on which I’m currently residing as K has a virus of some sort that is as-yet undiagnosed and we don’t want to run the risk of passing it on, which sucks big time) I thought to myself that if I didn’t have to be anywhere today and I didn’t have any deadlines today or tomorrow then what I should really do is just enjoy the emptiness for the day.

Which is just what I set about doing. I managed to spend *almost* the entire day sprawled on the sofa bed watching some old Season 2 Episodes of Entourage (my inspiration of choice at the moment), surfing the ‘net, spending way too much time on Facebook and writing 14 pages of my current script, which has taken me up to 59 pages now and just a little behind my target for getting a first draft done by 1 April.

I haven’t spent a day doing practically nothing for a really, really long time and it was actually completely awesome and much, much needed. It’s amazing how much you can relax and recharge with a day of not doing anything at all. That’s really what weekends should be about but is something both K and I seem to be 100% terribly at keeping clear and free to chill out. We keep promising that we’ll be better at marking things out, but it’s a habit we don’t seem to be able to break. People are so nice they keep asking us to do things. And we appear to be incapable of saying, “no”.

But that’s all for another day and another time. Right now, I still can’t sleep because I apparently didn’t do enough today – ironic, huh? – to send me to street straight away. So I’ve got Devil Wears Prada on in the background and trying to work out if that attitude would work for CF Talk. I’m thinking not…

Today I finally finished my run of 4 talks in 3 weeks with an address to the CF Trust’s regional conference in Oxford.

Rosie, the Chief Exec of the Trust, originally asked my consultant to come along and talk about the adult service, but she couldn’t make it so the baton was passed to me. I love doing talks and things in general, but especially for the Trust. And even more extra-specially when it’s to talk up the amazing team at Oxford who helped keep me alive long enough to reach transplant.

I would pop the text up on here, but it was a 30 minute speech and the text is close-on 3000 words, which is quite a good deal mroe than anyone really wants to read on a blog, but if you really, totally desperately want to read a copy of it, let me know and I can mail it to you.

It went really well – by all accounts so did the entire day – and it seemed to strike the right notes I was trying to hit. It’s always hard to pitch a speech to parents of people with CF, particularly some very young children. You need to make sure you’re not belittling the task that lies ahead, the enormity of dealing with all the crap that life with CF throws at you, but at the same time it’s important to let them know that CF doesn’t strip your life away of all meaning or ability to have fun and it certainly doens’t mean you’re going not going to be able to make something of your life.

I think – I hope – that I managed to pitch it right this time. Certainly all the feedback I received from the day was positive, but then it’s got to be a pretty awful and borderline insulting speech that will make anyone come up to you afterwards and tell you it was rubbish, so it’s good not to get too carried away.

It was nice, though, to have a chance to catch up with the team who came along. Clinic time is so precious I’m always reluctant to stay and chat too long, but today I got there at lunch time with a chance to sit down with them (and my parents, who decided to come along for the day) and have a really good catch up and chat about things – medical and non.

On the way home I developed a killer headache and was running much later than I’d planned, so I had to pull out of a rehearsal visit in Northampton for the project I’m working on with the Royal and instead couldn’t do much more than veg on the sofa and eat a bowl of soup. Really bizarre, hard-core headache, it was, but it doesn’t seem to have recurred as badly since, so it must have been a one off and probably thanks to dyhdration more than anything else. Was a sucky end to the day, but it had been a good one for most of it, so no real complaints.

Tonight I experienced quite possibly the most mesmirising stage performances I may ever have seen, with the possible exception of So I Killed A Few People at the Edinburgh Fringe in 1999, but for very different reasons.

I was at Milton Keynes Theatre to watch the phenominal acting talents of Sir Ian McKellan and Patrick Stewart alongside Simon Callow in Waiting For Godot and they truly blew me away.

I have to confess that I’m not actually a huge fan of the play – in fact, I’ve never managed to read it all the way through as I got a trifle bored with it (sacriledge I know, but the arts are all about personal opinion) – but they made it a remarkable experience.

There’s an old acting lesson that states that acting is not about acting, it’s about reacting and that couldn’t have been more clearly illustrated than in tonight’s performance. McKellan and Stewart are constantly working in support and opposition to each other, always adding depth and flavour to whatever’s going on in the scene without ever battling to steal the audiences attention.

Didi and Gogo are difficult roles to play – emotions varying wildly, constantly on-stage but rarely actually doing anything – but they played them both with the deftness of touch that made sense of the unfathomable.

I could sit here and write about them all day, but I’d soon run out of superlatives and end up on a Lucky-style meaningless rant, so I’ll take my thinking hat off now and leave it at that.

Suffice to say that it’s still touring round the country and lands in London at the end of May at the Theatre Royal Haymarket and if you – or anyone you know – are interesting in a career in performance, don’t waste your money on silly summer schools which purport to teach you all you need to know in a week, or wile away your time at a second-rate acting school on a three-year degree course*, just save your cash and buy a front-row stalls seat to watch these masters in action. You’ll learn more in 2-and-a-half hours in the Haymarket than most acting course can teach you in a year.

*noted exceptions being the top-notch London training centres like RADA, LAMDA, E15 and Mountview. Possibly LIPA, too.

It’s funny because I’ve always laughed off those “Superman” posts from the time of my transplant 16 months ago, but I’m starting to think there might be something in it. I can’t fly, I don’t have X-ray vision and my hair doens’t go all slicked down when I take my glasses off. Most of all, I always wear my underwear beneath my trousers. The operative part of that word being “under”. But he is from Krypton so he may not have realised that yet.

My similarity to Superman merely extends to the fact that I appear to be powered by the sun. I’m very environmentally friendly in that respect – I’m solar-powered, just like Supes.

Last week I had really reached the end of my body’s ability to cope with what I was putting it through. I was sleeping in the daytime for the first time since my CMV set-back in May last year and I couldn’t rouse myself to do anything unless it was fundamentally important to either eating, drinking or earning enough money to eat and drink. I was slow, lethargic and just down-right knackered.

This week, in addition to having a little less to do – certainly less running around – the sun’s been shining and my batteries have been well and truly recharged. It’s such a wonderful feeling. I don’t know if anyone else watched the Comic Relief Kilimanjaro trip, but in it Fearne Cotton hit the nail on the head when she said, “People should never underestimate how good it is to feel normal.” That’s what I’ve go back to this week.

It’s interesting because even when I’ve been running myself ragged over the previous few weeks (or more), I’ve been totally aware of how great it is to be doing it all. I’ve never once taken my ability to do all these things for granted and every day I thank my donor and their family for allowing me to do it. This week has been a reminder, though, that as much as I enjoy what I’ve been doing, I really do need to make sure I leave myself some “me time” – some time just to sit and chill out and enjoy the world around me.

And that’s what the sunshine is great for – it’s 100% guaranteed to make you look out of your window in the morning and smile. At least it is for me. Even waking up at 5.45am, just seeing the first rays of sunlight and walking out to the car at 6.45am in broad daylight makes the day easier. I just feel more happy, more alive, more free when I can see the sunshine out the window.

My energy has returned and I feel like I can conquer the world again. I’ve got work coming in and I’m on target to finish my new screenplay by April Fool’s Day (no joke), which is motivating and energising me any more.

There’s a huge amount to be said for positive mental attitude, which is why the sun and summer help improve life so much. As a good friend of mine is wont to say, “This is my life and I choose to love it”!

I’ve been so busy of late that I’ve fallen way behind on my cinema viewing. Most disappointingly of all, I wasn’t able to get to all the Oscar nominees, which is something I try to do every year. I was really bothered about not checking out Doubt or The Reader in particular, but I also really wanted to see both Milk and Revolutionary Road. But time waits for no man and neither do cinema releases, which are getting shorter and shorter windows at the multiplex now.

Thanks to all of this I decided that I’d spend my first clear-diary-day yesterday at the flicks and catch Watchmen – the kind of film that is likely to make so much more impact on the big screen than when you bring it home on DVD.

Interestingly, I wasn’t expecting to like this very much, which probably served it very well. I have a strong tendency to hype things up in my mind and end up ultimately disappointed by them, so going into a film with low expectations often then works in my favour.

I was suitably impressed – it’s a really good film. The visuals, as you’d expect from 300-director Zack Snyder, are impressive, particularly the open two sequences. But what I liked most about it was how happy it was to let both the people and the story be ambiguous. There’s no clear-cut, black and white definitions in Watchmen at all.

I’ve not read the Alan Moore graphic novel this is based on, but knowing his work I suspect that all of the ambiguity is from him, something Snyder’s clearly worked hard to keep in. I can only imagine the pressure that came from the studio to “lighten it up” and make a few of the characters more likeable. But it’s tribute to Snyder that he stuck to his guns and has turned out a kind of anti-Hollywood blockbuster – it’s big and loud and brash, but it also has a very “indie” sensibility, putting the characters at the forefront and enjoying it’s inherent contrasts.

It’s definitely worth seeing, if for no other reason than it’s a rare comic book movie that ditches the idea of playing to the “tween” market and instead pitch itself exactly where the graphic novel that’s gone before it did. Like the uncompromising Sin City, this features gruesome, hard-core violence, full-frontal (albeit CGI) male nudity and soft-core sex scenes between two main characters. Batman and Robin this is not. Better than that, it is.