Allotment

Quite a few people have said, why trotter?

Well.

When Justin and I were travelling in India, we bumped into two English girls called Kate and Annabel, who were a) both very nice and b) (and this will become relevant) both quite short.  We got chatting, as you do, realised we were all going to Agra (to see the Taj Mahal) and decided to travel around together for a while.

They were great travelling companions, just generally lots of fun.  At some point, we swapped addresses, they went West to the beach, and we went North to the Himalayas.  I know who got the better of that deal, but we wanted, bless us, "an experience".  We kept in touch and for quite a long time, I used to go and visit Kate at her University, and Kate and Annabel used to come and see Justin and me.  

Around about this time, I guess 1993/94, the student rag Viz ('The magazine that's better than nothing') was in it's heyday, and Gav, Andy and I, clearly having nothing better to do, would sit around, probably on bean bags, guffawing happily away at the adventures of Mr Logic, or Morris Stokes:Paranormal Grocer.  One day, naturally just after Kate and Annabel had been to visit, one of the strips was called "Scotty Trotter and his Tottie Allotment" about a bloke who - of course! - grew short ladies in his back garden. Without even looking up from his copy of the magazine, Andy said, so Scotty Trotter, when's your tottie allotment coming back?

And, of all the things to stick, that one did.  I became Trotter. I suppose I should be grateful.  It could have been The Vibrating Bum Faced Goats that week, or Bertie Blunt (look it up - actually don't. Really, don't).

Milestone

As the blog approaches 10,000 hits - no more than 80% of which can be me, surely - I just wanted to say - thanks for reading.  When I started it, I had no idea what I was going to write or whether anyone would want to read it - let's face it, the subject matter is pretty depressing.

I am enjoying - if that's the right word - writing it, although to paraphrase Kath, obviously wish that I didn't have to.  To use an obvious word, it's very cathartic, and at the same time very strange, broadcasting your thoughts to the world with often little knowledge of who is reading - although many of you refer to passages of the blog when you email me.

On a separate matter, it's medical week again.  Pre-chemo tomorrow, chemo wednesday.  I have been feeling pretty fluey the last few days, which may or may not be due to the drug Zoledronate (or "The Evil Zoltar" as Rupert calls it) I was given last time.  Here's hoping it all goes ahead without a hitch. 

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.  

Adversity

Sitting on the train station, you talk to your brother.  After the conversation, it occurs to you how just brilliantly well he is coping in the face of his own adversity.  What was that description of your nanna - not flashy, with little glimpses of determination?  It clearly runs in the family.

Enjoy the Silence

In February, Gav and yourself down tools and fly to Switzerland, for a weekend's skiing in Leysin.  For Gav, it is the first taste of Val and Brian's hospitality, for you, the 704th.  Before you arrive, it snows and snows and snows.  For a while at least, somebody up there likes you.  It is a perfect few days, a beautiful chalet in a quiet resort, and you rub along together like two friends of over twenty years should.  Gav is happily bemused by the empty well-covered slopes, bombing gleefully down them while you follow behind almost with your eyes closed, able to navigate from familiarity alone.  Often, as you zip along, it is as though you have the resort to yourself, a glorious, almost meditative stillness broken only by the muted whirr of a lift overhead.  At one point in the weekend, at the Solepraz station, you have to queue, that is, wait twenty seconds for four people in front of you.  You look at each other and pretend it's a disgrace, not on, both grinning from ear to ear.  Later you sit in the Top Pub, lazily decide where to have dinner, feel at peace while working your way through ruinously expensive Hoegaarden.

You had ummed and arrhed about coming, in particular because the Swiss Franc is so strong, and even with use of the chalet, it's a costly weekend.  But in the end, like all the best decisions, you think - screw it, let's have some fun.  Wracking your brains now, you can't think of a single time in your life when that attitude hasn't been the right one.  Credit card bills are quickly paid off, while opportunities for photos like the one above are few and far between.  

Meanwhile, you recover from chemotherapy.  The week expires and you are yourself again.  Standing in the bank queue, while H is next door ram-raiding Fat Face, from nowhere you experience a moment of absolute peace and tranquility.   Depeche Mode's "Enjoy the Silence" fills the air, the chill bought about by the changing seasons makes you think of Leysin, Courchevel, Val Thorens, and you wonder if you'll ever see these places again.   The cashier calls you forward, and the spell is broken, save for a daft dreamy smile on your lips.

Nanna

Bill makes you think of your Nanna, Letchworth Nanna.  We grouped our grandparents geographically, Letchworth Nanna, Hitchin Nanna - you get the idea.

They were all lovely, your grandparents, although Letchworth granddad did like to sit quietly pickled most of the time.  Each to their own.  By the time you were at Cambridge, he had gone on.  As Letchworth was only three stops from Cambridge, from time to time you would take the train down and see Nanna, just to say hello.  Quiet, not flashy, with little glimpses of determination.  One day she did the kindest thing you've ever seen - not being flush herself - and gave you £100.  You said no, she snorted and ignored you.  You said, OK, but don't do it again, this isn't what I've come for, which seemed to please her.  Then you said, you know I'll probably spend it on beer?  She said good, although maybe with an eye on the empty armchair in the corner.  Then, no doubt, you walked the dogs over the common, to see family, Amy and Sonny, pottered back to the train station, three stops back to a different world, connected only by an unbreakable intersection on the venn diagram.

Later, Nanna moved to be nearer younger family, your Aunt.  One day you visited her there, away from her old network, away from Amy, Sonny, the common, away from the empty armchair.  Things didn't seem to be working out.  You helped her to get her boiler working.  She made a cup of tea, then sat down, looked around the place, said, I never see anyone, I don't know what the point is, there's no point to me anymore. Shocked, you can't remember your response.  You hope you told her you loved her.

Years later again, she moved once more, nearer to your mum and brother, and it seemed to work out better this time.  Then, at the end, cancer.  You visit and sit in her little room in the home with her.  She is a husk now and she says - I wish someone could end it for me.  Gently you explain that that person would get into terrible trouble.  She knows, and sighs.

Bill

During Chemo, you talk to Bill, who is in the chair opposite you.  Bill is in his seventies, and has been in out of hospital with various complaints for about 15 years.  Now, obviously, he has some form of cancer.

You like Bill.  Bill tells you that his wife is ill too.  Bill tells you he doesn't want to be here anymore, and you don't think he's referring to the chair that he's in.  Suddenly, you don't know how to respond.  For once,  you apply the brake that means you don't - like normal - say literally the first thing that comes into your head.  It's almost worse though because his words just...hang, solidify, in the air.

Maintenance

This unit will shortly be undergoing essential maintenance, and will be offline for a while.

Chemo 1.3

Chemo 1.3 tomorrow.  You take your steroids, which make you feel a bit...peculiar.  People take these voluntarily?  Chemo is necessary, but - as discussed at length on this blog - not a pleasant experience. It is not something anyone would ever look forward to, but the effects are good.  So you are caught between a rock and a hard place really - to have it or not to have it.  It reminds me of an old joke I once heard and, never having progressed past the mentality of a 15 year old, always rather liked.  Don't follow the link if you are easily offended, it is juvenile, stereotypical, exceedingly crude, and generally un-pc.

Another thing that occurs to me - when I'm not around, someone else will have to learn the joke about the pianist who can't stop swearing (my money, for what it's worth, is on Rupert) - and there's no way I'm posting a link to that one.

Decompartmentalisation

Either it's just me - and I don't think it is - or we all compartmentalise our lives, our friends, our relationships.  I have friends - sometimes just one, sometimes a group - from Uni, Lincoln, Law School, London, Home (work) and so on and so on.

It is like a big complicated venn diagram.  Lots of people know each other, lots of people have never met (and probably wouldn't get on), some people have lots in common, some people have literally nothing but you in common.  Over the years, the diagram drifts, changes, sometimes quickly, sometimes at a glacial rate, imperceptibly slowly.

Some friendships have a natural shelf life, but some are too strong to really die even after 15 years of not being in contact, they are just...latent.  A time like this is the acid test of those relationships - you quickly realise that there are some people who are important to you - and you to them - that it's great to be back in touch with, great to hear from.  Their voices, either on the phone or on email, are unmistakeable.

But really, aren't we silly for letting these people drift out of our lives in the first place.

Thursday

We go into the ward - on the assumption it's always better to go in person than just ring up.  We bump into Dr G who says - "Ah, I was just talking about you".  A few minutes later, a result.  Chemo will now be on Monday, not Thursday.  Good news.

Meanwhile, off topic, I love this - a translation table for British politeness.

For example -
What we say:  With the greatest respect...
What we mean:  You are an idiot.
What foreigners understand: He is listening to me.

Wednesday

Dr G rings with follow up from yesterday.  He says the full results look more consistent with a good response to treatment than progression of the disease.  He chooses his words very carefully - no doubt through years of experience, not wishing to give someone in my position false hope.

So, chemo will be rebooked, with the same drugs as before.  We will have two more sessions, then another CT scan, then another rethink.  It could be Thursday next week.  It could be before.  But, for today at least, the rollercoaster is pointing upwards.  

While we're on the subject of Rollercoasters...

I'd quite like to get off this ride now.  

Tuesday

Hmmm.

CT scan, blood test, meet Dr G.  Dr G says, the news is mixed.  I don't have the full results of the CT yet.  But early indications are that the lung is stable, but the liver and bones may be getting worse.

So, tomorrow (Chemotherapy session 3) is on hold for now, until the full results are in.  The options then will be either - continue with the current drugs, change the drugs (probably, this time, involving hair loss), or look for a trial in London.

It is like a punch in the stomach.  Not least because it doesn't match with how I'm feeling - I feel like the treatment is doing me some - a lot of - good.  I guess this is what people mean when they say it's a rollercoaster ride.  Such a simple phrase, but the reality is not pleasant.

So, this development looks like it will take away my cosy little schedule which I have grown used to.  It might postpone the party we have planned - or mean that we have to cancel it - again.  We just don't know yet.  It is an almighty pain.  I don't want to sound too English and understated, but the whole thing is just so...bloody inconvenient.

Meanwhile - http://www.noonedeservestodie.org

Apparently, "Many people believe that if you have lung cancer you did something to deserve it".  Really?  Really?   If that's true.  I'd like a word with those people.  Each and every one of them, individually.

Monday - Transfer deadline day.

Medical week comes round again.  It is like transfer deadline day - get everything done by the end of tomorrow, because then the window of opportunity slams shut for a while.

We see the Macmillan doctor, Dr D.  We talk about the effects of the chemo, and she draws me a back-of-an-envelope diagram of what chemo is doing.  The bottom (x) axis is time, and the side (y) axis is number of cancer cells.  Dr D explains that each treatment should attack the bad cells (as well as my useful ones, like platelets, and white and red blood cells), although they might start to re-multiply as we get to the end of the three weeks.

I point out - jokingly - that I like the look of the graph Dr D has drawn, as after the fourth treatment it seems to show that there are no cancer cells left.  She looks at me sympathetically, and explains very gently that it isn't accurate.  I know, and I'm not being serious.  I know this isn't going away.  But I have to joke about it, even if, somewhere in the distance, the clouds couldn't be much darker.

Later this afternoon is my second CT scan - to try to work out the effect chemo is having.  More warm iodine.  Tomorrow is the pre-chemo blood test, x-ray and talk with Doctor G.  Finally Wednesday is Chemo session 1.3, and all the anti-sickness drugs invented.

Before all of this, we see Mrs M.  I may have to ban people being nice to me, concerned about me.  Everyone is, in their own way, but there is something in Mrs M's manner - she tells me I look so much better, she will do anything to help, and is full of energy and vigour - that sets me off.  Hardened as I am, I have to walk away a bit quicker than normal.