Posted tagged ‘twitter’

Chopped Liver – Social Living

December 5, 2010

Finally got out to see The Social Network – the film about the creation of Facebook.

It’s a funny old world we live in.

We will watch countless hours on Reality TV showing people sitting in a room every day with nothing to do – and we call it entertainment.

And when we’re not doing that, or more than likely, when we actually ARE doing that, we are tweeting and posting comments on Facebook – about the fact that we are watching the same people doing the same thing every day on that box in the corner of the room.

Ha! Ha! Super Great Fantastic!

If we are watching a football match on the telly, or BBC Question Time, or a Strictly or X Factor or whatever else we might be watching – our experience is not complete unless we have Twitter or Facebook open at the same time so we can read strangers’ comments about what we are watching.

It’s as if it’s not actually happening unless it’s on a Social Media site.

It reminds me of the time around 30 years ago when the Mount St. Helens volcano erupted in Washington State. People who could watch it from their back garden, and sense the real danger to their lives, would be indoors glued to their TV set – as if somehow it was only real if it was on TV.

But we are where we are – and there is no sense in hiding from it – it is all-consuming. We want to hear the insightful comments first and fastest. We want to make the insightful comments and have an instant and often appreciative (see “RT”, or “Like”) audience at our fingertips. It is compelling.

And so last night I travelled 20 minutes in the freezing cold, paid 20 quid to sit in a jam-packed (still!!) cinema to watch a geek creating the first of trillions of posts and making billions of dollars doing it. And you know what? It’s bloody brilliant. Couldn’t wait to get home to tweet, post blog about it – that’ll make it feel more real.

Now there… are 3…. steps to… carry a donor card – ooh, wap wap!
Just follow steps 1, 2 and 3.


Chopped Liver – Transformer Man

November 3, 2010

Well I dreamed I saw the dogs in armour coming...

(It’s a Neil Young song – from his “vocoder” era).

What? You mean you don’t know Neil Young’s Vocoder era? Shame on You. There’s a neat little story that goes with this – I don’t even know if it’s true or not – but, hey hey my my – why let the truth get in the way of a good story.

Neil had all his success on the Warner Bros. / Reprise label. But there was a dispute or whatever – anyway David Geffen came along and allegedly used his not inconsiderate wealth and muscle and signed him on a 5-album deal in the mid-80’s. Neil, of course, insisted on full artistic control. And so he used this period to, how shall we say, experiment. He brought out a dull country album, a straight rock n roll record, and this weird vocoder stuff that sounded, well, at best, futuristic (though we still have not reached that future) and, at worst – nothing at all like Neil Young.

Anyway, the story goes that after the first LP was released Geffen said to Neil that he was not best pleased as the record sounds nothing like a Neil Young record. Neil responded, allegedly (or I made it up), with something like – No Problem Dave, I’ll put out another 4 just like it – then they will sound like Neil Young records.

Which brings me to the reason I call this post Transformer Man. It is a nod to the great @ukcybernaut Twitter buddy of mine – who is recovering from a double lung transplant. He tweeted and blogged about his life waiting for the op, right up to sitting in the hospital waiting to be sedated prior to the op. Had his daughter keep Twitterland updated as to his progress while he was in ICU, and is now back tweeting and blogging himself again.

Hey, I make it all sound so easy and matter of fact – I can assure you – not that I know – that this is one helluva feat. And Mark, for he has a real name, recently entered a “competition” to be recognised as a Golden Tweeter and came a highly creditable 3rd out of 183.

I suggested to Mark, that perhaps he should have considered a TRIPLE lung transplant if he was really serious about winning that competition but I don’t think he was too keen…

But it does give us transplant-type peeps something to shout about, something to publicise, something to help raise awareness about donating organs – so please do whatever you can to help raise awareness – even if it just means that you will pass on the details of my blog or Mark’s blog (Take a Breath and Say 99).

There are many many others waiting for similar operations – some, like @asu_juliette who has been waiting for 4 years.

And finally, Anita asks what the ooh wap wap in the link below means. Anita! I am shocked. Dismayed. Saddened. You know, if I didn’t know you better I may even have felt it necessary to explain to you – but not you… nooooo wap wap!

Now there… are 3…. steps to… carry a donor card – ooh, wap wap!
Just follow steps 1, 2 and 3.

Chopped Liver – Trust Yourself

September 9, 2010

I have been asked by the British Liver Trust to write a piece for their bi-annual magazine. The topic is about me, my fundraising and my blog. Below is what I’ve just knocked up and intend to send to them. I reproduce it here for these reasons:-

a) It saves me writing another blog post today
b) I’d like your feedback
d) what happened to c)?
c) ah, there it is
e) I think it’s quite appropriate after almost 200 posts and the completion of 6 months since I started to re-visit why I’m doing this

    The Article

Dealing with the news that you need a liver transplant affects people in different ways – dependent on your physical state at the time. If your liver is functioning so poorly that it affects your daily existence, then this news should be greeted with optimism and eager anticipation.

However, if, as in my case, I am able to function fairly normally, save for bouts of colangitis, then dealing with the situation is less straightforward. How much longer can I get away with a failing liver? Weeks? Months? Years?

How is it I can feel fine some of the time and yet still have to face such a life-changing operation?

I decided to put my faith and trust in the team of medical experts to deal with my physical state in the best way they can – and I will concentrate on my mental well-being.

We live in the age of communication and information at our fingertips, on our desk PCs, on our mobile phones, so let’s seize this opportunity and bear all as I travel on my journey of discovery. I am naturally a private person so this was somewhat of an anathema to me, but I started writing a daily blog of my feelings.

Topics ranged from the gory needle-fest of my medical assessment, through personal events that affected my personal life e.g. the recent death of my father, the death of one of my fellow-transplant patients. Both of those events had a direct bearing on my emotional state.

As regards my father’s passing, I had to leave London to attend to affairs and funeral activities so had to temporarily leave the transplant waiting list – not something I was keen to do. The death of my “colleague” brought home two factors to me:- 1) that this is no joke and 2) that we all suffer from different conditions and we should not let the misfortunes of others hi-jack our positive attitude – especially as the general prognosis is good-to-excellent for many.
And so I continue to write my daily blog and yes, it has turned out to be a cathartic exercise for me, and perhaps an inspiration for others. But, more than that, I feel that I not alone. Sure, I have loving and caring family and friends, but I also have an unknown audience out there who never miss my daily postings. I know this as, one day I had not written my blog post by 23:30 and I got a “tweet” on Twitter from someone I did not even know asking if I was alright.

Ah, social media. Twitter and Facebook have really transformed the way we communicate – we live our lives in the moment – we live in global real time – and this helps knowing that when I need to bare all about my feelings – I tweet, and it is seen. And I have made a community of friends in Twitterland from interested people, and transplanted people, and people just like myself – on the list.

I can add links in every posting and on my blog page to show people just how easy it is to register as an organ donor, or to contribute to the liver charity page I set up using JustGiving – and it thrills me when I hear from people that they want to thank me – just for giving them the kick-up they needed to click my link and register.

It has been 6 months now since I was told I needed the transplant – 6 months of daily blog posts. I’ve had my ups and my downs – and they are all there for people to read.

Now there… are 3…. steps to… carry a donor card – ooh, wap wap!
Just follow steps 1, 2 and 3.

Chopped Liver – Hello world!

March 5, 2010

All of these blogs start with Hello World! You’re probably supposed to edit it and write something witty – but you know I kinda like Hello World! Listen, I dont expect the whole world to be hanging on my every keystroke – it’s just that I am about to embark on a cathartic exercise – cathartic in the way that I am about to reveal a lot of things about me that previously I would keep hidden from people. There will be people who have known me for many years who will not know these things – and one of the reasons they wont know is that generally, naturally, deep down, you know I am a kind fairly quiet, reserved person (maybe a shock to some) who pretty much keeps himself to himself.

But, we live in changing times.

I am fortunate to be able to witness the new communication revolution that is there to be embraced or ignored as you feel – this is the world of Social Media – and I believe if you embrace it you will reap the benefits – if you ignore it you will only be putting off the inevitable.

So, embrace I shall.

This is the first ever blog entry I have written – I am already a late developer. But if I type fast enough I am sure I can catch up.

Not sure what some of these features and widgets do – but I’ll ignore them for the time being as I need to get on the with explaining the reason for my blog.

I have recently start Tweeting – I already no longer find it silly and funny to say to someone “Haven’t you seen my Tweets?” Or, “Wow that’s great must re-tweet it” – so that’s good – I’m jargon-savvy already.

You see – a few miles down the road from where I live in NW London, there is a meeting going on – where I am being discussed. A similar meeting took place just over 2 years ago with the same group of people and out of the discussions it was decided that I was not quite suitable. But I am back on the agenda. The people involved are Liver Consultants.

I am being considered, as I write this, for suitability to undergo a Liver Transplant.

I have a long history of internal issues – Crohns Disease since 12 years. Regular checkups have revealed abnormal but inconclusive blood test results in my liver. Biopsies (fully awake and via the jugular vein – wow – astonishing!), endoscopies, Ct Scans, MRI Scans all shown up problems – gallstones (loadsa gallstones), inflamed gallbladder, oesophigal varicies, stomache varices (varicies are …. Google it if youre not too squeamish – but they can burst at any time and …. eh… be … eh not very good… really at all.. much), an enlarged spleen – or, as my consultant likes to call it – a monster spleen – my spleen likes blood platelets.

Blood platelets are the part of the blood that prevents clotting. An average male has between 140,000 and 300,000 of them – I have 17,000.

Not that I dont produce them – I do… but my spleen likes them so much that it eats them all up – hence the enlarged spleen – its full of my platelets.

Ok – I am going to sidetrack here – the hospital – or more accurately, the liver transplant unit of the hospital , has just called me to say that the meeting of the consultants has taken place and that I am indeed to be put forward for assessment for a liver transplant – oh, and they have a slot free for me to start on Monday morning (today is Friday!) as an inpatient – a brain scan (EEG) is my first port of call at 08:45 on Monday.

This has upped the ante for me – and brought things home that its all systems go – I guess I am grateful that I am getting this started sooner rather than later – the waiting and uncertainty is a hard part to deal with – I need to pick up my son now from playdate (he shall be known as Weedy – as in wee D.

Back Later….

B is out all day. She is my wife – and a combination of the stress that the “closest to the patient” goes through, the enormous amount of work she has spent the last few weeks completing and also just being there for Weedy meant she wanted to take advantage of my day at home to gallavant in town. I think she is on her second movie as I write this.

Have to confess – was a bit ratty to Weedy this evening. He was acting like a bleedin’ 5-yr old. I suppose it is to be expected as he is 5 years old. I asked him to phone his grandpa to wish him Happy Birthday – he did phone but then said nothing – so I start doing my own ratty thing to try and get him to say the words and the more I say it the more exasperated I get and the less he wants to say it – and then he goes and does the crying thing – you know that thing that 5 yr olds do and then I take the phone off him and try to have a nice birthday chat with grandpa and Weedy is by now hysterical in the background – and I just have time to tell my parents (plural) who by this time have picked up a phone each to hear all this commotion and me saying oh by the way I am going in to hospital for my week of assessments for impending Liver Transplant….. not a good call.

Weedy and I are friends again.

I just wanted to finish off my preamble on my liver – you know – how I got to the point where there is no option left but to whip out the old and ring in the new. I had a routine MRI scan some weeks ago – but hadn’t had the results.

I had a sore tooth. Look that’s relevant. I am not just some hyponcondriac who has to blog about every little pain he feels. I’d had the sore tooth for two months ladies and gentlemen – and thats a long time to have a sore tooth. So I went to the dentist (no shit Sherlock) and he concluded that the tooth needed to be removed.

Y’see that’s the thing with me – I dont mess around. If something is causing me pain or discomfort I just get it whipped out and be done with it. But of course the dentist couldn’t do it – on account of my low platelet count – could get very messy – so I had to be referred to a hospital (remember these? I call them free hotels). But… and here the story turns full circle (not before time I hear you cry! Listen if you’re still with me after all this then your hooked in for the ride – you wont leave me now) – the dentist had to write to my liver consultant to get clearance that the tooth extraction could be undertaken with such a low platelet count).

So I pre-empted the letter – phoned my consultant (from now on I am going to call him Smiler, ok? Smiler = The Doc – from now on) – and I left a message with his secretary – saying I need a tooth out – oh, and have you got the results of my MRI scan – just out of interest y’know). Well, next day I get a call on answer machine from Smiler himself saying he has looked at the MRI scan and …. finally I get to the point – there is a blockage in my portal vein leading into my liver – I need to come into hospital for tests immediately.

Now a blockage means it is a blood clot – that’s what the blockage is – there’s not much else that travels down veins – portal or otherwise. So this was last week – I spend a few days in the ‘ossy and they do a CT scan on the affected area.

I am told during the week that there are 2 alternative courses of action 1) to give me injections to anti-coagulate my blood clot – dissipate the gunge and let it – I dunno – flush itself out I guess. Failing that option 2 comes into play – which is to puncture the (look, do turn away if you’re squeamish) puncture the vein stick in some tip or stent or something to re-direct the blood clot so that it goes somewhere safely away. I don’t particularly care for option 2.

So they have the CT scan results, and they discuss the options and I await the findings. As I am walking up and down the hospital corridor listening to Pixies on my iPhone (oh, my iPhone – where would I be without you?) – up strides Smiler himself! “Hi David”, he says, with a big cheesy grin – “we have studied your scan”. “And I have to say it looks terrible!” “As bad as could be expected” “But” he says triumphantly, “there is good news!”

“Oh good” I responded, attempting to outgrin him. “I’m all ears!”

Smiler does not wait for me to stop grinning. “Your blood clot is in such a position that we can get away with the transplant, remove the clot, and your varicies, and your gallbladder, and your gallstones, and you….”

“What? Hey … what happened to option 2 ? You know that nice easy puncturing the vein one – I was really looking forward to th…”

“No, that’s not an option – you see it may work… it may not – but one thing is for sure – if we do that we can never again consider a transplant option for you – so that’s not the way to go.”

“Just one thing Smil… eh, Doc? How come I have a blood clot anyway given I have so few platelets – y’know the blood’s clotting agent?” Smiler just smiled – I think I understood. We have an understanding you see – me and The Doc – after all I wouldn’t put my liver into just anyone’s hands now would I?