Bucket - 3

Bucket list again.  I love the new Sherlock with Benedict Cumberbatch and Tim from the Office.  So, 6) I really - really - want to know how Sherlock survived/faked the fall at the end of Series 2.  I have a theory that there's a Sherlock double out there - in fact, early in the last episode, that is made pretty clear.  And Sherlock is very friendly with Molly who works in the morgue.  But, erm, how does it all tie up.

That's it.  Nothing meaningful.   

Balance

There are lots of things that people say that you get used to.  I should stress I'm not being critical - we get pretty much nothing but support and offers of help.  One of the things is - I can't imagine how you're feeling.  I'm not surprised - half the time, I don't know myself.

Although as I said before, we are hardened to this, the truth is I was, and am, just as shocked as anyone.  The reality of it comes at me in waves, or bite sized chunks if we want to mix our metaphors, in quiet unheralded moments, when I'm watching The Hotel Inspector.  I wish I could say there were times that I forget about it altogether, but that, frankly, would be a lie.

The received wisdom is that you have to be positive.  It's true, and I get that it's important, but sadly it's not a panacea.  And positivity has to be tinged, balanced, with realism, otherwise it's just a bit silly - the docs have, as previously noted, been pretty clear about the long term - so you think, well, if ten people tell you you're drunk, lie down.

But the short to medium term is a different matter.  There's plenty to be done, and achieved on the days you're well enough.  And there has to be some positives.  Genuinely, hard, impossible, as it may be, I don't want people to mope about this. I want them - that means you - to think, blimey, that could be me.  Life is short.  I better buck my ideas up, get out of my rut, do something amazing.  Basically, use my time wisely.  Live.

Looking back, I haven't done bad - quietly, in the background, while you weren't looking, I took a good number of my chances, and think, hope, I behaved reasonably well along the way.  But I think if I'd have known what was in the post, I would have upped it a notch or two.

I am aware this theme - take all your chances - is becoming a repeating one on my blog.  It's entirely deliberate.  It bears repeating.  If it's boring, well, sorry and all that - but it's so important, really it's the thread which I want to run through the whole blog - and yes, I will return to it again and again.  Until you - all of you - start doing something about it.

Subtlety

There are few people who would accuse me of being subtle.  I don't know if it's a Lincolnshire thing, a male thing, or having a mathematical brain rather than an artistic one.  Or maybe it's a family thing - we are all pretty blunt, and even now I think of it as a virtue.  I have, particularly in my working life, come across so many people who are naturally....political, and have never liked the trait, whilst simultaneously observing those people swiftly climb the corporate ladder.

It is only in the last few years I've come to realise that, just like on the table for British politeness I linked to in an earlier post, people say one thing and mean quite another.  Yes means maybe, or I'll think about it, or no don't be so stupid, how could you think that.  I'll bear it in mind means I've forgotten it already. And incidentally means the primary purpose of our discussion was the following.

Not understanding a lot of these subtleties naturally puts you at a disadvantage.  And I've noticed that  doctors, particularly with someone in my situation, leave things unsaid, leaving you to work out the fine detail for yourself.

A few months ago, when I was having the investigations which led to diagnosis, I had a CT scan followed by a bronchoscopy (a tube down the throat into the lung to take a biopsy), as well as X-rays and blood tests.  The CT scan came first, and we were told by the first doctor we saw that if the results came back ok they might cancel the bronchoscopy.

On the day of the bronchoscopy, a junior doctor came in to consent me.  I was pretty frustrated by this point as to how long everything was taking (there always seemed to be a two week wait between procedures and appointments), and the lack of information coming my way.  I asked if the CT scan had come back ok, he said, oh, I don't know if the results have been looked at.  I then made the point that the previous doctor had told us this procedure would only go ahead based on those results, so it seemed a little odd they hadn't been looked at.  At this point, the junior doctor started to get pretty flustered - understandably, as this previously meek and easy going patient had suddenly started to cross examine him.  He then said, oh yes, the results have been looked at.

Brushing aside the odd little about turn, I asked if he could tell me what the results showed.  He couldn't.  I guess this was the point we started to get worried.  Either he genuinely didn't know, which seemed a little unlikely to me, or he didn't want to worry us unduly in case the bronchoscopy came back clear.

Since then, having had lots of discussions with Doctor G, I have realised that the CT scanner must have lit up like a Christmas tree when I went through it.  There is a big part of me that would have preferred the doctors to be frank with me all the way through the process, even if they just told me what was likely rather than what they knew for sure.

In fact, my ideal doctor would be Doc Martin off the telly, who, yes, I know, is actually Martin Clunes and isn't real.  I like blunt, I like facts, I like feeling I'm in good hands (which I do, with Doctor G, Doctor D and my GP, for the record).  Bedside manner I can take or leave.

One thing that Doctor G is very careful about phrasing an answer to is The Big Question - how long have I got.  Doctor G, we were told before we saw him, would only talk about median - average - survival times, which he said were 18 months.  Presumably he is very careful about what he says as he knows that whatever time he says people will take as gospel - I have exactly 18 months to live!

But thinking through the answer, there's no better way to phrase it - if you got all the people with the same condition, lined them up in order of how long they would live (the logistics of which would be interesting), and picked the middle person, that person would live 18 months.  Being naturally of a cheerful and optimistic disposition - stop laughing - I read quite a lot of hope into that.  This is an old persons disease.  I am a relatively young person and believe I am better equipped than your average 70 year old to fight it (although bloody good luck to anyone in the same boat as me).  So, here's to plain speaking, and beating the average.

Trains

My brother used to have a poster up, a map of the British rail network.  At the age of 7 or 8, I thought the names on it - Carlisle, Doncaster, Newark -  hopelessly exotic.  At 18, a year out before university, trains meant freedom, visiting friends - Kathy in Lancaster, or Mark in Hull - or interviews for university.  Always, on the way back to Lincoln, the Cathedral would be visible from miles away over the endless flat landscape, welcoming you back.

And in long summers, trains meant adventure - travelling around India with Justin, to Jaisalmer, Goa, Manali and a jeep to Leh, Buddhas three stories high.  Or the wonderful Trans-Siberian with David F, 6 days of vodka, pine trees and snow.  Or to the South of France for the longest summer of all, working on a chantier.

In "The Kingdom by the Sea" Paul Theroux navigates the coast of Britain, on foot and by train, during the Falklands war, travelling on dusty slow moving branch lines to long-forgotten outposts. He quietly records the chatter of the locals, the shared anxieties of war, the mundanities of everyday life, and the decline of once great, now faded seaside towns.  It is a beautiful, slow moving book, somehow deeply sad - it always seems to be drizzling - but which I have returned to again and again over the years.  I have always wanted to retrace Theroux's steps, take those obscure branch lines, if they still exist, and walk over the same headlands in the same drizzle, and now I realise I had unconsciously planned to do it when I retired.

On the train on the way to the curry last week - all ten minutes of the journey - all of this came back, how trains were somehow wonderful - not in the way that trainspotters find them wonderful - but as portals to adventure.  And on the bucket list, maybe unattainable now, one of the greatest journeys of all time - across Canada to the Rockies.   Maybe, maybe.

Photo

Adrian B comes up trumps, sends you a copy of a long lost, much loved, old photo.  It is May Week in 1992, you are looking at Lucy's friend Simon as he concentrates.  He is a brilliant musician, while you are basically just holding a guitar.  Behind the camera, just out of shot, sit Adrian, Lucy, Dan, Andy A, Gav, Tim B.

You want to get into the photo, just for an hour, talk to them all, sit in the sunshine, be healthy, be, above all, without a care in the world.

Bucket - 2

I have been thinking about the bucket list - somehow there should be another name for it - and realise actually there are probably quite a few things on it.  In no particular order, a first draft.

1) See Puffins.  I can't explain it.  I just want to.  Discussing this at last night's curry, I felt a bit daft saying it, but as I did, Paul's eyes lit up with a fervour I've never witnessed before.  Yes!  Yes! Ok...
2) Go across Canada on a train (nice and easy then - more detail on this in the next post)
3) Go Paragliding - it would have to be a tandem, needless to say.
4) See Liverpool play live again.  Mr Fixit, Mark J, is already on the case.
5) Go punting on the Cam.

Insurance, Control and Gravity

There is an old story, probably apocryphal, about the great physicist Richard Feynman, which I have always liked.  Apparently one day he was lecturing students about gravitational forces - telling them that it required an enormous body (for example, the Earth) to exert any form of force over even a much smaller body (for example, the Moon).  The point is, he went on, "gravitational forces are actually extremely weak....".  At this point, so the story goes, the clock in the lecture hall fell off the wall and hit the floor with an almighty bang.  Without missing a beat, Feynman finished his sentence - "...but not negligible".

So far, so geeky - how is this relevant to this blog?  Sitting in the curry house last night, with Mark, Paul and Dave J (who is rumoured to be Nick Frost's stunt double, and whose personality is large enough for it's own gravitational field), you talk to Dave about that most exciting of subjects, insurance.    We all know we should probably get some, but probably don't know exactly what, and begrudge paying what can be not insubstantial premiums for something which is never going to happen - right?  My point is, your chances of getting seriously ill, or dying before your natural time are indeed probably very small, but - as I am living proof - crucially, are not negligible.

You urge Dave to think carefully about it.  You want to repeat it over and again, but he is an intelligent man, gets the point, and hopefully you stop before his eyes glaze over.

I don't want to sound like an insurance advisor salesman.  I would just urge anyone reading the blog to think about what situation their family would be left in if they ended up like, well, me.  

But all the different types of safety nets are confusing, at least, that's what I found.  To my mind, with the clarity and benefit (if you can call it that) of actually living the situation, I think three are necessary.

1) Life Insurance - a lump sum to be left to your estate if you die.

2) Critical Illness Cover - a lump sum to be paid out to you if you are diagnosed with specified conditions, which should be paid to you whilst you are still alive.

3) Income protection cover - if you can't work, how are you going to pay the bills?

Maybe I should get this blog sponsored by an insurance company.  Anyway, pious lecture over.

All of the above is just one part of a deeper, baser need which all of us have - the need to exercise control over our lives and situations.  This is something which I've been thinking about a lot lately.  As we have been continuing to deal with my condition, sometimes I've felt that I am scrabbling for even the tiniest bit of control I can exert - dates and times of appointments and so on, but that in reality, I am nothing more than an animal choosing the colour of the bars of it's cage.  

But when I think more clearly, I realise that actually that's not the case.  In the end, what I, we - with the massive support of huge numbers of people around us - are trying to do is prolong my life as long as possible, (and put in place support structures for those around me).  It's not like something is going to happen which wasn't going to happen anyway - we all die, in the end - the only thing which has changed is timescales.  So, if I am just that animal choosing the colours, well, we all are, one way or another.  And that's no way to think about life.  Thinking about it that way, I feel quite uplifted, inspired.  And outside, quite literally, the sun is shining.