Archives: Blogging

I know, I know, I know – it’s been WAY too long since I last updated, but trust me, I’ve been busy.

I will endeavour to find some time over the weekend to give a full and proper account of the, frankly, crazy-busy and pretty momentous events of the last couple of weeks, but I just had to jump on for the last 5 minutes my brain is operating today to shout about Live Life Then Give Life, the award winning charity.

I’ve been somewhat remiss in not talking on here about our recent nomination for a Charity Times Award for Campaigning Team of the Year.  The Charity Times Awards is a prestigious charity-sector awards ceremony that recognises the best in not-for-profit work and those who support chartiable organisations.

Five of our six trustees managed to make it down to the Lancaster Hotel in London last night for the Black Tie dinner at which we were all shocked and delighted to be announced as winners in our catagory.

The judges said in their citation, “This was an outstanding campaign made up of many effective and innovative strands and appraoches, achieveing great sucess.”

We were all amazed to be thought of as the campaigning team of the year, although according to the sponsor there was only ever one winner, which is overwhelming and a great boost for all of us.

We had happily resigned ourselves to making the most of the PR opportunity that being nominated for such a renowned award in only our first year as a charity, so we were all overcome with emotion when we headed up to the stage to collect our awards.

The appalause and good will from the other charities at the ceremony made us realise how well thought of (and how much more well known than we had suspected) Live Life Then Give Life is.

To see Emily, Hal and Jen’s faces as our name was announced (and it’s a picture, let me tell you), check out the video here.

We partied long and hard into the night (although mostly alcohol-free) and came away buzzing.  We have all invested so much personally into this charity since we first got involved with Emily and Emma’s campaign back in 2006 and it’s indescribable what this recognition means to each and every one of us.  We are so aware of all the help we get from our supporters and our advocates, who go out there and tell their stories and help to increase awareness of our desperate need for more donors in this country.

Rest assured, though, we will not be sitting back and feeling chuffed that we’ve done our job now we’ve got an award – if anything, this has motivated each and every one of us to keep ploughing onwards.  In the words of friend, top blogger and independent filmmaking guru, Chris Jones, “Onwards and Upwards”.

Today has been an amazing day.

Some weeks ago, Live Life Then Give Life were invited to an annual service held by the British Organ Donor Society (BODY), who hold an event every September to commemorate the lives of organ donors and those recipients whose lives they saved.

In WImpole Park in Cambridgeshire, they have an avenue of trees, which people can dedicate to loved ones or anonymous donors and every year they dedicate a tree to an organisation as well.  This year, they wanted to dedicate one to Live Life Then Give Life.

I went along with K and Emily to represent the charity and we all knew that it might be an emotional day.  What none of us knew ahead of time was just how amazing a day it would be and what a wonderful feeling it was to be there.

The service is almost impossible to describe.  In a tiny church in the grounds of Wimpole Hall, the Rector leads a service which frequently crosses boundaries between memorial, thanksgiving and celebration.  There are donor families there, people who have lost loved one but took the immensly difficult decision to allow their organs to be used, and there are recipients, like Emily and I, and their families, there to celebrate and give thanks to the people they never knew and will never know who gave life where it was ebbing away.

There is a part of the service at which anyone may stand up and talk and tell their story, or simply say a quick thank you.  To hear the contrast of stories between donor families and recipients is stark and unsettling, but at the same time it’s uplifting to see the strength that the donor families take in the knowledge that they’ve helped someone to carry on.  The gratitude of the recipients shines through more brightly than any lightbulb every could and the strength that each side takes from the other makes it a wonderfully cathartic, if hugely emotional, experience.

As a charity, five of Live Life Then Give Life’s 5 trustees owe their lives to our amazing donors, so it was nothing short of an honour to be invited to the day and to receive a tree from the Society.  As I stood at the front of the church to talk about us and what we do, to thank BODY for their gift and to thank our donors for what they have done for us, I got a strong sense of closure with my donor.

I know nothing of my donor, or their family, except that when my family were celebrating their greatest Christmas, they were enduring their worst.  I know that I will never know my donor and I will never be able to visit their grave to thank them for what they’ve given me.  But now there is a tree dedicated to Live Life Then Give Life and now that I know there is a place where donors are commemorated, I feel like I have a place to visit to give thanks, a place I can go to commune with my donor and let them know all that I’m doing to make the most of the new life they’ve given me.

Next  year is BODY’s 25th anniversary as a charity and I sincerely hope that I can be there for the service again, but also that I can pack the church with donor families, recipients and their families and anyone touched by organ donation, because being in the presence of some of those amazing people yesterday was one of the most remarkable and moving experiences of my life.

Live Life Then Give Life continued our assault on the corridors of power today as Emily and I went along to a lunchtime lecture at the Department of Health to talk about organ donation and the reasons behind it.

The talk was ostensibly to let the civil servants know the kind of policy issues they would have to address regarding organ donation in the coming months and years and was given by a lovely lady called Triona Norman, who had attended our Treasury talk and seen how great we were(!).  Emily and I, along with a friend from the Treasury, went along to give personal experiences and help to illustrate the difference a trannsplant can make.

It was also incredibly useful because we got the chance to meet and chat to Chris Rudge who is the new National Clinical Director for Transplant, otherwise known as the Transplant Tsar, who is in charge of implementing the changes recommended by the Organ Donor Taskforce report from last September.

Apart from the obvious bonuses of meeting and getting to know the Head Dude of transplant in the UK, it was fascinating to hear him talk and address many of the issues and common questions people have about organ donation and transplant.

As a national transplant charity, we often find that the same questions are fired at us constantly, mostly regarding our relation to the Spanish system.  It has been my personal position and the position of the charity as a whole, to point out to people that the Spanish system doesn’t excel simply because they follow a system of presumed consent, but rather because they have ensured a significant investment in the infrastructure needed for transplants, including staff training and – most significantly – a much larger number of intensive care beds than we have.

This is significant because the vast majority of organ donors die in intensive care, which means the more beds we have, the larger the pool of potential organ donors.  Interestingly, Chris Rudge also said that only around 20% of organ donors are victims of road traffic accidents.  Much more commonly, the cause of death is inter-cranial bleeding, more commonly known as a stroke, which can affect many young people as well as old.

The most significant part of Chris’ talk, however, was his reaction to the introduction of presumed consent. He is very keen to set up an investigation to see whether or not an Opt-Out system would actually increase the donor rate, or if other factors are more significant.  This is a breath of fresh air to me, as I’ve been saying since the recommendations came out that it’s not a given that presumed consent would increase the number of transplants.  It may increase the potential donor pool, but that’s not the same thing at all.

It’s great to get invited to talk at these events, because both Emily and I have learned from experience that making the issues personal makes and enormous difference in driving the points home to people.  But this was more of a bonus than usual, thanks to the chance to meet and chat with Chris Rudge and some of the people who actually have the power to make a difference.

Here’s a mini-transcript from a telephone conversation my dad had today with AA Travel Insurance regarding our current family cover:

DAD: “I wanted to check on cover because we have a “close relative” (our son, actually) who had a double lung transplant less than a year ago”

SP*: “A lung transplant?”

DAD: “Yes”

SP: “Was he hospitalized for the procedure?”

*Special Person

I spent most of this afternoon in a meeting with Emma and Emily, two of my fellow Trustees of Live Life Then Give Life.  I say fellow Trustees, what I actually mean is my superiors – as Chairman and Vice-Chairman of the charity respectively, they’re far more important than me.

Anyhoo, we spent a good few hours pouring over the construction of a firm business plan for the charity, something that Emma has been pushing for us to do for an age, but which all of the Trustees have been unfortunately lax in organising and offering in-put for.  I’ve been one of the worst offenders, knowing how important it is, but never setting aside the time to think about it properly.

Being locked in a room with the girls made us focus properly on the bits of the charity we needed to focus on and work out our strengths and weaknesses, where we’re good and where we can improve.  It also gave us a chance to analyse where we can best fit in with the rest of the transplant charities in the UK at the moment.

Obviously, still being very much in the planning stage (the other three Trustees have to look at and approve our ideas, for starters), I can’t really go into a lot of detail, except to say that I think we have finally identified what we do best of all and are now hoping to commit ourselves to rolling it out as our “thing” which we can use to promote organ donation in this country without treading on the toes of everyone else in the Tx community.

One of the key things we have identified with Live Life Then Give Life is our fantastic standing and relationships with people in the transplant community, both transplant professionals, people affected by transplants and other charities themselves.  Because of this we all saw it as being vital that we strive not to replicate, but to complement other people’s work.

Too often in the charity sector you see organisations compete with each other for the same people’s cash, the same people’s time and the same pots of money and in the end it can be counterr-productive.  Live Life Then Give Life’s core aims are to promote organ donation in the UK, so if working alongside other charities suits a project best, that’s what we’ll do and if we can see that another charity does something better than us, we’re not going to try to replicate their work, but attempt to support them however we can to achieve the same goals that we are.

So the plan is coming together and the potential for Live Life Then Give Life as a charity is huge.  I can’t wait to be part of it.

This week we have been rudely invaded by the real world.  After 10 months of existing in a perfect little post-transplant bubble, the time has come to look at things that people out in the big wide beyond have to spend time looking at.

With K off to uni in 3 weeks and counting, she is, naturally, going to have to give up work.  The full-time commitment of the course, coupled with the 3-hour daily commute is going to sap every last bit of energy she has, making weekends a time for rest and recovery and not for the usual kind of student money-making that normally earns the bookworms a crust.

So it falls on me to start winning the bread for the house hold.  It’s a very strange position to be in, seeing as I haven’t been in paid employment since I left Northampton Theatres in April 2005, nearly three-and-a-half years ago.

One thing I’ve learned from friend-of-the-blog Emily is that returning straight into a ful-time job post-transplant is a bit of a no-no.  Although I now have more energy than I think I’ve ever had in my life (barring, maybe, my early years), that doesn’t automatically equate to being able to put up with the stamina required for a full-time job and the stresses and strains that go along with that.

Instead, I’m going to be looking for something smaller and more part-time, but then I hit the thorny issue of benefits.

At the moment, I’m still covered by incapacity benefits because I’ve been under doctor’s orders not to work.  The idea of incap is that in order to help you return to work, you are allowed to do a certain number of hours of paid work per week without incurring penalties on your benefits.  The trouble with incap is that once you pass the 16-hours-per-week threshold, you lose everything – there is no middle ground.

And it’s not just the incap that you lose.  Incap comes tied in with an entitlement to various other benefits including Housing Benefit and Council Tax Benefit, which basically means my rent and council tax are paid for me as my income isn’t high enough to cover them.

So, all-in-all, the loss of benefit will cost us in the region of £800 per month.  That’s an enormous gap to try to cover between working 16 hours per week on benefits and finding the rest of the money once you cross that line.  In effect, it means that you are forced to jump rom 16 hours per-week all the way up to a full-time 30-40 hour week with no middle ground and no safety net, beyond returning to incapacity benefit.

It sounds easy enough to try out full-time work and use the Incap as a fall-back option if you can’t cope, but that’s forgetting the psychological impact of going back to “illness”.  Everyone I know post-transplant has faught an incredible battle to get themselves back on their feat and rebuild new lives in the wake of a truly life-changing blessing.  What all that effort means, however, is that none of us want to return to the perception of “illness” that dogged us for years both before and initially post-transplant.

So the search for so-called “gainful” employment begins.  Where am I going to end up, who knows?  As long as it pays the bills, I have to be happy with it, but I would much rather have an opportunity to do the things I want to do with writing, filmmaking and educating than have to sit in a call-centre 37-hours a week.  Hopefully, the 16 hours I need to start off with will enable me to carry on with my personal projects and find a way to make them pay.

Watch this space!

Today Dad turned Really Old.  Not specifically a number, but considering he was old last year, that makes him older this year.  And let’s face it, I’ve been calling him an old man since I was about 3.

Anyway, it was his birthday again today, so we had a day of doing Daddy things.  After I dropped K at work, I headed over to the ‘rents and we all shipped off to the Bedfordshire Golf Club to play nine holes on the par 3.  I used to be quite keen on golf, although I never had the strength or power in my arms to hit the ball very far.

Playing today reminded me that it wasn’t just the power in my arms that affected my game; it was also the fact that I’m rubbish at golf, which was a bit of a hindrance.  Still, I persevered and managed to not get myself in a completely foul mood (very easy for me with something as frustrating as golf – I don’t have the world’s slowest temper), which I was pretty proud of.

I was not proud, however, of my score, which was just the wrong side of diabolical.  In fact, I went round a 9-hole course with a Par of 28 in the same number of strokes as the course record on the 18-hole full-size course.  Now that’s rubbish.  I did, however, get more points on my scoring card than anybody else.  Sadly I don’t think that’s necessarily a good thing.

After golf I toddled home to collect K from work and we welcomed the little niece and newphew over with their mum for a bit of fun and frolics.  I managed to get myself jumped on on the bed and also squished beneath both of them in our armchair.

Once they’d gone and we’d recovered showered and dressed for dinner, Bro picked us up (he had borrowed my car for the day) and we headed over to the ‘rents to shower Dad with his present.  Birthdays seem to get much less bountiful when you get older, but Dad had his new driver so he was happy enough.  (That’s a golf club, by the way, we haven’t employed someone to fery him around).

Talking of ferrying peope around, I then drove us all over to The Birch in Woburn, where we once again had one of the nicest meals I’ve ever eaten at a restaurant.

(For the foodies out there, I had Pumpkin and Sage ravioli to start, followed by Saddle of Lamb Wllington, both of which were absolutely exceptional.  For desert I had Pannecotta, which was a first for me, as had everything been, and it was very nicely presented and seemed pretty perfect, although not entirely to my taste)

I genuinely can’t recommend it enough – it’ a beautiful restaurant with great fresh, seasonal food and the owner/proprietor is a fantastically friendly, chatty guy.  All the staff are exceptional and they made Dad’s birthday meal really special without resorting to silly hats and group-singing.

We eventually dropped the drunkards home around 11.30, which gave us just enough time to get home and hit the hay before midnight.  Great day.

Having spent the majority of the day with my cousins yesterday, today was catching the flip side with a trip down to K’s cousin in Harrow.

Before we left, I asked K if she lived anywhere near her Uncle’s shop, Sorrell and Son, in Harrow.  She assured me that she didn’t and that it would be best to follow the AA route-planner’s instructions to get there.  Without wishing to draw out a story that you all know the ending of, after spending half-an-hour getting lost in and around Watford, Bushey and Harrow, we eventually ended up on our intended road to SP’s place, gliding straight down the high street past Sorrell and Son.  Fab.

Luckily, we’d left plenty of time for getting lost, so we actually arrived 2 minutes early, to find SP whipping up a storm in the kitchen.  K’s attention was easily diverted to the lemon meringue pie that was just being pulled from the oven, until I reminded her that she had to be a good girl and eat all of her main course first.

SP is one of those hilarious people who cook and amazing meal and then declare themselves disappointed with it.  She almost apologised for it, at which point I let her know that if that was a bad meal, I really, really wanted to come round for a good one, as it must rival the best grub in the poshest restaurants.  So here’s hoping for another invite.

We eventually left in the early evening and toddled home to chill out on the sofa.  We threw on a DVD that SP had leant us, Personal Services.  Starring Julie Walters as a prostitute/brothel owner it’s brilliantly funny, albeit slightly bizarre and wacky in places.  She ostensibly plays a madame who owns and operates a “fun-house” for kinky old men who like doing peculiar things for their kicks.  It’s very much not the kind of movie I expected to see with Julie Walters in, but she was excellent and so was the film – with the exception of a truly bizarre and completely dreadful score.

No sooner had it finished than K and I were tucking ourselves up for the night at the earliest time we’ve been to bed for nearly a month.  It was, I have to say, a treat and a delight to be nodding off at a sensible hour.

Today was the wedding celebration for my cousin and his new wife after they got married in a low-key ceremony back in January and decided to wait to celebrate properly in the summer. I love my family to pieces and was so unbelievably happy to be there and celebrating with them, as well as meeting some relatives I’ve never met before and some I haven’t seen for years.

But my biggest problem was that I had people constantly moaning at me that I’ve let my blogging slip since my op. So this one is for everyone at the party who berated my lack of updates. And I would promise to update more often, but we all know it’s not going to hold any water.

Today started, rather incongruously, with a two-hour stint spent at the Rockingham Motor Speedway in Northamptonshire, just North of Corby. Way back at Christmas, bro and I had been bought a day’s introduction to single-seater oval driving, today being the first day we could synchronise our diaries to get it done.

Reading up on the event beforehand, I read this about it, which slightly deflated me. Following a pace car around a track didn’t seem like a whole lot of fun to me and 15 minutes didn’t seem like a huge amount of track time.

We got there plenty early and grabbed a cup of coffee to caffeine us up for the morning’s work, before being taken to the in-field paddock area and briefed about the cars, which were sat tantalisingly in front of the garage in the pit lane. We were a small group of just 4 drivers and 2 spectators, including video- and photographer, K. After our briefing we headed out to get kitted up and then wandered out into the pits to be assigned our cars.

Jumping into Number 13 was petrifying – not because of the number itself (I don’t hold any truck in superstitions), but simply cocooning yourself in something so small. It was quite claustrophobic to begin with, but luckily I had a few minutes to get myself settled after they’d explained the controls before we headed out.

We were split into two groups of two and I was directly behind the first pace car. Coming out of the pits and accelerating to modest-to-high speeds I may or may not have crunched the gearbox a little. It’s easy to do, what with the clutch being so heavy that I pushed myself further back into my seat every time I pressed it. Luckily, the beauty of an oval is that gear changes are non-existent save for when you’re coming in and out of the pits.

Following a professional driver, we lapped at a steady-but-fun pace until the orange lights started flashing around the track to signal an incident and we came back into the pits to collect the other two cars from the second group. It turns out that the front wing had flown off the second pace-car coming through the final turn, only just missing my bro in the process. I was quite glad it was him and not me.

On our next run, the pace gradually got quicker and quicker as the pace car brought us up to somewhere approaching race speeds. Had I not been following him, I’d have sworn it wasn’t possible to go that fast round the 4 turns of the oval, but being in prime position behind him, I got a perfect view of the lines he was taking and realised quickly that if his car did it, then my identical car would, too.

In fact, I was rather chuffed to see that the others couldn’t keep pace with us, dropping back so much that the pace car had to slow down to collect them again.

20 minutes in the car later, I was beginning to feel to exertion take its toll on my shoulders and arms from the forces involved in holding a steering wheel in a turn at over 100mph. Although the speedos were disabled in the car (to keep you focused on where you were going), we were told that the average speed of the runs would be approximately 120mph. It was unbelievably awesome and I love every minute of it. Far from my initial fears, I soon realised that I actually went faster behind the pace car than I would have gone on my own. And I certainly wouldn’t have driven that close to the wall.

Adrenaline rush done with, we jumped in the slightly-less powerful Mazda 6 we’d driven there and headed South to Shoeburyness, where we arrived at A&A’s place for the celebrations. My Mum’s brother were there as well as a cousin of hers, introducing me to my second cousin, whom I’ve never met, and her gorgeous pair of daughters.

My cousin’s brood (not A&A – that one’s still in-coming) all took a shine to K quickly and to me, too, after a while, although we have met them before – but when you’re 8 and 5 it’s hard to remember people, especially when you’re also trying to cope with the overloading of the senses brought about by an influx of people you’re never seen before. Their youngest, however, wasn’t so keen on us and would start crying as soon as she was handed over to anyone other than Mum, Grandma or Granddad. I did managed to have her for about 30 seconds at one point, before she realised that Mum had used the food-distraction method to fob her off on Uncle Oli and she cried foul.

It was such a great afternoon and evening. My family are all wonderfully close, even if we don’t see each other for long periods, we pick up where we left off. It’s always a joy to spend time with them all and catching up with those I hadn’t seen for years made me so happy. It’s wonderful to be able to properly share those family moments again.

Today was one of those days which, when you’re getting used to the idea of having new lungs and a new life, really remind you how special and wonderful a gift it really is. I wouldn’t have dreamed of doing the racing I’ve done today this time last year and the family day would have worn me out completely. Driving home from Southend tonight gave me pause to think about how little I’d have been able to do after nearly 6 hours at someone else’s house, playing and chatting and eating and drinking (nothing alcoholic, I must add, in case you were worried). I’ve never have managed it and a drive home, too, and certainly not when I’d been driving fast cars in the morning.

The gift of life is the greatest gift anyone can give or receive. It is the only gift that bears out the cliché of the gift that keeps on giving. I am blessed in so many ways and so grateful that I have so many opportunities to remember it.

I hadn’t actually realised it’s been nearly a week since my last post.  In fact, I was just sitting at my desk doing work-y things when it occurred to me that I hadn’t done anything for a bit and wondering when it was that I did.  Anyway, if you haven’t read the Duck Race entry, do it now then go and sponsor a duck then come back here.  I promise I’ll still be here.

I’ve had one of those weird weeks where I can’t remember what on earth I’ve been doing other than the fact that I seem to remember being quite busy.

My main occupation over the last two days (that’s Monday and Tuesday) has been attending Business Link’s free courses on how to start your own business.  They come in 3 flavours, as well as a general introduction session that I did late last month.  So on Monday afternoon I did a three-hour session on planning a business, writing a business plan and doing market research to be able to justify the idea in the first place, swiftly followed by a three hour evening session on Marketing and Sales, which was unbelievably helpful and taught me a huge amount of stuff I didn’t know before and has really helped me with some techniques and strategies to follow should I decide to go down this route.

Then after a day of rest and brain-recovery, I did another three hours on Tuesday night on Managing Money – all the financial aspects of running a business including book-keeping, tax and national insurance and other important financy-things.

What surprised me the most about the whole thing was that I actually really enjoyed being in a learning environment again – being taught things, learning things, using my brain to try to grasp things I’d not fully understood before.  It really was great fun and really, really helpful.

As a side note, any of you who think you’d like to start a business or similar, I can thoroughly recommend Business Link and their services and courses.  Everything they do is 100% free and you can do the open workshops like I did as well as talking to a Business Link Adviser, who are all bona-fide business people who really know what they’re doing.  I’ve been really impressed by them and would definitely use them again.

Beyond my courses the only other thing of note I think I’ve done is attend a show produced by my old MKT boss at the Grove Theatre in Dunstable.

I’m not one for hyperbole – ok, I am, but I’m not one for giving undue praise, so it should be noted that the Grove’s Wizard of Oz is without doubt the best Youth Theatre production I’ve ever seen.  It was utterly remarkable and even more so for the fact that it was put together as part of a two-week summer school.  That’s just 2 weeks spent working with a professional director that got the kids involved up to a standard superior to some professional productions I’ve seen (no names mentioned, Yellow Wallpaper).

I was thrilled that TJ invited me to come and see it and gobsmacked at the standard of performance from the entire cast, but particularly by the four leads, who blew me away with their voices and their physicality.  I really can’t congratulate the cast or the guys at the Grove for such a spectacular show.

I’ve got a busy weekend of fun coming up this weekend and I promise to blog in full detail about the whole thing on Monday, provided I don’t forget again…