Archives: Friends

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 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.

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.

Hugest apologies for the lack of blogging – last week was completely manic, trying to squeeze in as much of my over-flowing inbox of work as I could before spending the weekend away in Bath with K’s ‘rents for their joint birthdays.

It was a totally fantastic time, but I was unable to fore-warn of a lack of blogging as it would have given the game away. The weekend, which was spent in a rented cottage just outside Bath in a lovely little village near Westbury along with three very good friends of the family, was a total surprise.

We took K’s ‘rents off to Longleat house for a tour, which her Mum believed was all that was happening, before she received instructions to pack for 3 days away. Arranging to travel in separate cars, we arrived with her best friend from the village back home in ours to surprise her. With the other friends traveling up from Devon stuck in roadworks, we frantically tried to delay the house tour for half-an-hour. Expecting to be told that it couldn’t be done, instead we were offered a private tour of the house for no extra charge – remarkable people at Longleat.

Despite the delay, we were still un-accompanied at 12.30 when our private showing of the great house began. It was a fascinating and mesmerising tour and I’d recommend it to anyone with an interest in history or historical houses – it’s gobsmacking. Half-way round, the staff were so unbelievably kind enough to bring the missing pair of our party up to join us when they arrived. Much surprise (although Mama D had guessed who the sixth and seventh of the party might turn out to be) and hugs/handshakes ensued before the very accommodating host could continue her tour.

Once we were done we all repaired to a local pub for a late lunch, after which we all waved goodbye to the each other before heading, in convoy, to Woodside Cottage to surprise them once again with their accommodation and the fact that all of us were, in fact, staying with them.

The evening was spent in a bit of a haze of trying to work out who was where (K and I being in the annex across the way), whether anyone wanted to eat anything (verdict: no, but cake will do nicely) and what we were up to the next day (eventual decision, whatever we wanted) before we all engaged in a frankly hilarious round of card games before taking ourselves to an early bed.

The next morning, to my surprise, I was awake before the house opposite, heading out on a paper run before breakfast. After a chilled out morning, K and I headed into Bath itself to catch up with a an old friend over lunch and a personalised tour of Bath, which included some very strange people reading poetry in a taxi and more gorgeous architecture than you could shake a stick at.

In the evening, after a brief afternoon nap, we all enjoyed dinner together before a dynamite game of Scattagories before crashing out.

Weirdly, I woke up on Sunday morning feeling absolutely awful. I’m not sure if I was over-heating and dehydrated or had eaten something disagreeable the previous day, but my head was pounding and I felt incredibly sick.

As the others all headed off to Lacock Village and Manor, I stayed in bed with K watching over me and ended up sleeping until gone 3pm, at which point I woke up feeling almost right-as-rain, save for a lack of energy from lack of food.

Another evening of fun-and-frolics was met with an early(ish) morning this morning, getting up to breakfast, pack and leave by 10 am. As the others began their trek home, K and I decided to take a more leisurely turn back to MK, stopping to catch up on Lacock (where I discovered they’d used the Abbey to shoot portions of the Hogwarts cloisters in the first two Harry Potter films), taking pics and enjoying tea in the oh-so-English tea-shops that abound in pretty little villages around the country.

On the road home from Lacock we got minorly lost around Cirencester before coming through the most beautiful village/town we’ve been through on all of our travels. The name escapes me, but I want to live there.

Coming through Bicester on the way home, we stopped at Bicester Village, which K had never seen. After wandering the stores deciding that we can’t afford anything there (sorry, we didn’t like the look of anything there), we jumped in the car and headed home, only stopping for the briefest of traditional post-tour stops at Borders and then a quick meal at a fantastically-valued but chronically unfriendly pub before getting home around 7pm, unpacking our things, changing the bed, showering, blogging and – now – going to bed.

It’s been a great weekend and it’s been really nice to totally remove myself from work for a few days. Now it’s back to the grindstone and on with the first of my 3 talks in 10 days.

Not like that.

After a fun night of snowballing on Monday, Tuesday started slowing me down a little with a scary kind of feeling that I had something brewing. As it turns out, I did, but it was only a cold.

It feels quite good to sit here at a keyboard and type “only” a cold – as one of my friends put it in a text on Thursday, a simple cold used to be a serious issue to me. It would have me worried, K worried, my parents worried. And we’d ride it out and get in touch with my team at Oxford and sort out some antibiotics to treat the inevitable chest-infection that would have followed.

Now, having a cold means I feel a bit rubbish for a couple of days. I love colds like that.

Still, it does have its drawbacks. Since developing my cold on Tuesday night, I appear to have returned to a previous life as a hardcore insomniac. Since Tuesday night into Wednesday, I’ve been sleeping appallingly. Indeed, I sit in the lounge writing this now at nearly 4am and I’m still not feeling anywhere near tired enough for sleep. But during the day I’m becoming Zombie-fied.

This week has been a fortuitous week to be stuck with insomnia, however, since the snow has meant any work I did have lined up has been cancelled and, as of Thursday, we’ve been properly snowed in. I say “properly” but that’s not 100% accurate. What I mean is that we can’t drive anywhere, which, in Milton Keynes, the city modelled on American-style grid-road systems, is a bit of an obstacle.

Yesterday I did manage a wander down to the shops at the bottom of the road, which is somewhere in the region of a mile’s walk, and discovered that traipsing through snow is incredibly hard work. Coupled with the cold, it left me exhausted. I was certain that it was going to help me sleep better in the evening, but no dice. Another hour of lying in bed tossing and turning lead to me getting up and staying up until I finally all-but-passed-out in the late-early morning hours.

So now I’m sat back in the lounge watching 4am tick ever closer, ploughing through more of the extras on the new Lord of the Rings Extended Edition Box Set I picked up from the now-defunct Zavvi in CMK and charging myself up with the drive and passion to go out and make at least one of the short film scripts I have lying on my desk just waiting to be tackled.

I just need to find a cast…

LOVED the snow today. Kati was off Uni as there was no transport whatsoever in London, which was pretty cool. I shot over to the ‘rents very gingerly this morning, trying to catch Gramps before he left for home, but failed as he wanted to get going in case the weather got worse.

Stayed and had breakfast (I left in a hurry) and coffee, then played a little Wii with my bro before dropping him at the station.

Worked all afternoon on various bits and pieces, but since most people work in London it limited an amount of what I could get done.

K and I ventured out to Tesco to grab some dinner stuff since our cupboards were Old Mother Hubbard’s and while we were there we had a little too much fun with snowballs and decided rather than going home we’d go play. We phoned K’s bro nearby, but the kids were showered and changed and not allowed out again, so we phoned S&S instead and decided that we could still play because we’re grown-ups, which means we can do what we like.

So after swinging by KFC for a snow-bound dinner, we headed to the S&S house, wolfed our food down and headed for the play-park, where the game of Snowball Chicken was promptly invented while K built a snowman.

I ran around a lot and felt a little bit sick from bending down constantly to gather snow up, but that’s OK because I’m a grown-up. I also broke the back of the snowman’s head off by mistake when I was trying to make him a better eye socket. That wasn’t quite so OK as K had spent a long time on him and it was bad. I did repair him, though.

We meandred back to the house and tried to make a smiley face from snowballs on the wall, but it looked more like the wall had a nasty case of albino chicken pox. Oh, well.

We got back home, showered and changed and settled on the sofa to catch up with a ton of stuff we’ve got recorded on Sky+, watching A Short Stay In Switzerland, the BBC film about assisted suicide based on a true story. It’s a cracking film with great performances but an unfotunately clunky script.

Suitably teared-up, we head to bed around 11pm and I sack out pretty quickly.

I apologise for the lack of updates after my not-too-rubbish start to the year with regular updates etc. I have, however, been somewhat preoccupied over the last couple of weeks with various mentally-busy work-related things, including producing a DVD of a project I worked on last year and completing a First aid course for work at the Grove.

Most excitingly of all, though, is the fact that I’ve been settling in to my new role as Chairman of Live Life Then Give Life, something of which I’m very proud. Our former Chairman, Emma, has felt it necessary to stand down, although she will, thankfully, be staying on as a much-valued trustee. At a meeting two weeks ago, the rest of the board of trustees saw fit to elect me into post as Chairman and I’ve been pretty much rushed off my feet ever since.

I clearly chose precisely the wrong two weeks to step up into the new role, having spent my first week in post working 10-4 on First Aid every day and my second week locked in my home editing suite to cut, design and finalise the DVD for the schools project I worked on with Suze last term. There’s a showing of the vid at the school on Tuesday morning, so it’s the usual deadline-getting-your-butt-into-gear deal as I rush to make sure it all looks tip-top.

Despite the fact that it’s taken me a lot longer than I expected, I’m really proud of the result – it’s going to be a great representation of the project and a great show real for both my work and for Suze’s Catalyst Theatre Arts, the company she runs with her sister, who throw a lot of work my way so it’s nice to be able to give them some marketing material out of it, too.

So it’s not been the best of weeks to try to get to grips with all the extra bits and bobs that go with being a Chairman as opposed to a trustee, but I’ve already seen a whole new side to the charity and what we do. I’m also delighted to see the way our two new trustees have slotted in to the team. The problem with having a team that’s as close-knit as the Live Life Then Give Life team are is that when you introduce new people to the equation it can be difficult for them to find their place and not feel out-of-the-loop or left out. But the current board of trustees have really taken to the new guys and have been working brilliantly with them from Day One, which is such a great feeling not just for me but for eveyone.

Hopefully now things are on a slightly more even keel, I’ll be keeping the updates coming through on a more regular basis. Unless work gets manic again, I guess…

The alarm goes off at a frankly unconscionable 5am and I drag myself up and into the shower. K and I hurriedly dress and K bolts some cereal while I head down with Dazz, scrape the car off and bring it round the front. Strangely, we’re not as overly concerned about getting parking tickets as we were when we parked here to unload last night. Wonder why?

We’re on the road by 6am, heading South as rapidly as we safely can, making good time until we have to make a stop for petrol, delaying us just a touch. We get back to Mum and Dad’s around 8.30, where I drop K as it’s closer to the M1 than our place, then pretty much turn straight around, heading again for fuel (I wasn’t going to fill my whole tank at service-station prices when I knew I could top up in MK for about 5p per litre cheaper), grabbing something for breakfast and a large cup of coffee at the same time.

I get back on the road and fly down the M1 and round the M25 to Surrey to Emily’s place for the Live Life Then Give Life meeting. To my surprise, even after turning off the wrong junction (I blame my crap-covered windscreen, not my memory), I still arrive in plenty of time.

We have a meeting, which all goes very well and we sort everything from the week out, which is a blessing, plus move forward with our planning for the next 12 months or so. I leave around 2.30, dropping Jen at the station before hitting the M1 home and getting in around 4ish after making really good time home – and not even speeding crazily.

I get to Mum and Dad’s and, since I’m earlier than I’d thought, I head upstairs and pass out on the bed for an hour. After my nap I wander downstairs and sit flicking through the paper and the book I bought at Blackwell’s yesterday, which somehow seems a very, very long time ago.

Dad rustles us up some steaks, which are lovely but still have to be disappointly over-cooked due to my strict dietary-controls post-transplant. I have them less-than-well done, which is technically against the rules, but I don’t see the point in steak if you cremate it before eating it. And it’s not blue, or even rare, so that’s OK I figure.

After dinner we head back to the flat, where we veg in front of the telly and catch up on some Sky+’d stuff before calling it a night early, where I hit the pillow and pass out completely.

The alarm arouses us both at 7am and we roll somewhat lazily out of bed, showering, dressing and packing an over-night bag to take with us.

I run K down to the hospital for an acupuncture appointment and head back to the flat to collect the bits and pieces we’d realised we’d forgotten on the way down there, most notably the iPod, which would have lead to some 5 hours of driving forcing Radio 1 on us.

I get back to the hosp just as K is coming out – impeccable timing – and we head straight off for Oxford. We get there surprisingly quickly after a near-miss with a mini-coach which decided to pull across my path while I was trundling along the country road at 60. We park up at St Giles and walk down the freezing cold street round the corner to Blackwells, the awesome pre-Borders Borders at the heart of the student world of the town. K’s never been there, so I delighted in showing her the wonderful underground cavern that disappears beneath the house-front of the shop on the main street.

We spend half-an-hour wandering aimlessly around and I grow slightly disappointed at the absence of a lot of the books that got me excited last time, although knowing how much I could have spent if they were all still there, it’s probably a good thing they weren’t. On our way out, we head up a staircase that I’ve never ventured up and we find ourselves in a whole new part of the shop with modern fiction (classed as anything from 1950-odd) and a brimming children’s section.

K finds a whole load of her new-favourite Jasper Fforde books – a necessary since I’d been nice and picked some up for her without realising they were an official series and so needed to come in a specific order. Order restored to her collection and a bizarre comedy book bought for our host this evening, we departed across the street so I could wander through their Art & Film shop, where I am torn between two books and end up getting one which will hopefully positively impact the production levels of the Live Life Then Give Life docs that we’re shooting through the year.

We wander back to the car through the positively freezing winter’s air and pick up a copy of the Big Issue from a poor guy who looks like he’s on the verge of frostbite but still has a cheery smile on his face and is genuinely grateful when we pick one up. We’d passed him on the way in to the town, but not had change and I think he recognised it as the classic excuse for not buying – he seemed really surprised that we’d actually gone back and got one.

We headed up to the Nuffield to get my bone-density scan done, just a precautionary scan to keep a check on how my calcium levels are doing and how brittle my bones may be as it’s pretty common with CF to develop osteoporosis and can be exacerbated by some of the transplant drugs I’m on.

Post-scan we head across the road (and round the corner a bit) to the Churchill to catch up with my CF team, who now I don’t have my port in anymore, I have little reason to see apart from the odd check-up or annual review. It’s great to see them all and catch up with the gossip including flicking through the slideshow of one of the physio’s weddings which was being planned when I was last incarcerated in the Churchill – it seems like such a long time ago now, it really is like another life.

Catch-up out of the way, we leave them to treat the patients who need them more than me and get on the road up to Bradford. The motorways are pretty clear, barring a little bit of late-afternoon traffic around Sheffield and we hit the M62/606 around 5ish, then whack the Sat-Nav on and hunt out Dazz’s place of work, where we drive straight past him in the street. The man collected, we head over to Shipley to his new flat and commence the warming of said homestead both literally (given the chill-factor) and metaphorically (it being a new pad).

We chill and chat and eat and watch DVDs and generally have a giggle, while I spend half-an-hour sorting some Live Life stuff for tomorrow in the middle of it. Dazz has also brought all his retro gaming North with him, which includes an ancient Game Gear with Lemmings on it, which keeps us all entertained for a large part of the evening as the conversations are punctuated with outbursts of swearing at misbehaving creatures hurling themselves to their deaths.

Around midnight, we all decide to call it a night and then spend an hour trying desperately to inflate Dazz’s new air-bed, which has to stand in for the sofa-bed which is due to arrive next week.

Eventually we flop into bed around 1am and near-enough pass out.

Today is the first day in a long, long time that I can remember not having to set an alarm or otherwise being awake before a sensible hour and it’s wonderfully delightful. I rouse around 10.30am and roll out of bed, leaving K to doze a bit while I catch up on the blog.

I head to the loo and to make coffee and discover that K’s been awake for over an hour and has been sat in bed reading, having heard the typing and thought I was busy writing proper stuff (rather than a pointless blog). I feel bad, as we could have had a nice lie in together, so I head to the kitchen, make us a tea and a coffee and then grab K’s laptop from the living room and we settle into the bed to watch the ITV-Catchup of Ben Shepard’s new Krypton Factor re-do.

It’s actually pretty similar to the old one and just as entertaining, although I’m annoyed that they’ve dropped the flight-simulator round from it in favour of an extended obstacle course. I still can’t do most of the tasks – at least the mental ones you can do from the sofa. I’m sure I’d rock at the ones you can’t try from home.

Once we’ve watched that and a couple of other bits and pieces, we drag ourselves out of bed and get showered and dressed to pop over to Mum & Dad’s to catch the football – Saints playing Man Utd on Setanta.

Sadly, it’s not the world’s most legendary game. An upset was never really on the cards, but we acquitted ourselves well given the fact that we had a man contentiously (although, I argued rightly) sent off and a penalty that really, truly wasn’t given against us, too. 3-0 is by no means an embarrassment to the kids who make up the modern Saints team, but it’s still disappointing.

After the footie we hang around for a dinner party with some of the ‘rents friends, which is really nice as I’ve not seen many of them for quite a while.

While Mum’s getting ready to serve, we get a call from Tim, which brightens everyone’s mood, then we sit down to eat and by the end of the meal (and the wine) the discussion is getting deeper and deeper into the politics of Afghanistan, America, the UK and the Taliban and everyone’s inter-relationships with Pakistan and other places.

I feel a bit out of my depth, as I often do in political discussions, but I still wade in with my opinions, mostly gleaned from things I’ve heard through other people, particularly my bro. It’s interesting how people’s views can differ so vastly and it just served to highlight the fact that none of us really know what’s going on over there.

We head off about 9.30, on the hunt for an early night. We drop one of Mum’s friends home on our way past, drive through a massive flood which seemed entirely out of keeping with the current amounts of rainfall, then get home, jump into comfy clothes and sit in front of The Recruit on TV for a while, until I’m too tired to stay awake and I call it a night.