BC - 4

Pain and fatigue ebb and flow.  You don't know how you will be from one day to the next, take as much rest as you can.  On Boxing Day, you leave the house, go for a long walk in the cold air, supported by H and your mum.

You have to remind yourself that you weren't always like this.  Weren't always puffy faced from steroids, reliant on endless painkillers, a terminal case being slowly managed toward the exit.  Before all this, you took your chances, lived a little.

I wrote the following in 1995, long before I met my wonderful wife.


On your last day in Paris you buy an English newspaper, trot down into the Metro station.  It was the last day you would see her.  You take a seat, open the paper.  Britain, the header read, the West Trial.  Reading the article makes you feel a little sick.  Then, your stop.

You're late, half an hour.  Meet on the platform she'd said.  You glance around, through the bodies streaming towards the exit.  The crowd passes, and you wander over to her.  You couldn't get the Wests out of your head, but down there in the brilliant light of the tube station, you couldn't imagine such darkness.

You're late she says, pretending to tell you off.  Has she seen this about England?  She'd rather talk about something else.  You can understand that.  She takes you lightly by the hand and leads you through the Chinese Quarter.  In the lift, as though to hammer home the point that yes, you really are in a French Arthouse movie, she says - Embrasse moi and it all goes a bit

At her grandmothers apartment, you kiss, and when she slips out of the room for a moment, you think, how could these two things exist in the same world - the Wests and what they had done, and this day.

Afterwards, you lay there and want to stay that way for ever.  In an old woman's flat with old woman's things.  A thought tries to pass through your mind, but it won't form properly.  It's something like, funny how and where we find solace.  But that wasn't it.  Not exactly.

Xmas

I've had lots of messages of support over the last couple of days.  Thank you.   And Merry Xmas!

An unexpected error has occurred

Back for the usual pre-chemo appointment with Dr G.  You and H sit in the waiting room, with two unusually chatty fellow sufferers.  You have been feeling grotty for the last 2 or 3 days, and, even more than usual, don't feel like small talk.  But Mr A and Mrs B aren't to be put off, and are keen to share details of their conditions.

Mr A says - I always ate well and I've never been a drinker, looking you in the eye as if daring you to contradict him.  You nod noncommittally.  As soon as she can get a word in, Mrs B grabs the conch and runs with it - telling you in detail about her nosebleeds, and how badly she feels it was dealt with.  Mr A, a little put out not to be the centre of attention, looks at her blankly.

Eventually they run out of steam, and ask what is wrong with you, about your symptoms and side effects.  Today, you have no desire to give out personal information to perfect strangers, and it is a relief at that moment to be called by the Dr.  As you pass Mr A and Mrs B you say, hypocrite that you are, nice talking to you.

Dr E, Dr D's assistant says - how have you been feeling. You say, tired, then two weeks of feeling really good, then the last three days pretty rough.  She looks at you and draws a breath, says, we have the results of the CT.  It shows further progression of the disease.

You say - you mean Docetaxel isn't working, and she nods - she says, we won't progress with chemo on Docetaxel.  She carries on talking, although right then your head is swimming, and you can't take anything in.  You register a few key words like thrombosis, infection, echocardiogram, but not much else.  All you know is that this is not good.

Dr E writes out a prescription for a bumper Xmas sack of drugs, and says - we can try another option, another chemo drug, and you talk about it and agree.  Again, just like Docetaxel, the odds of this one having a positive effect aren't high.  You nod, thank her for her time, and, numbed, float out through the ward to the pharmacy.

Later, outside on the way to the car, the drizzle feels fresh, particularly welcome on your clammy skin.  In the evening, it rains as if it will never stop, and your house, just like you, is pummelled and pounded from each direction.

Feedback

I've had a lot of feedback on the blog recently - words like humbling for example, and just very positive comments on the writing style.  It means a lot to me - I am pretty blown away with the reaction if I'm being honest - so thanks for your comments.  

The last 2 or 3 days have been quite up and down, with a fair bit of back pain.  I am due for more chemo on Thursday.  Fingers crossed it goes as well as before.

Clear out

H got really emotional today.  She was clearing out the under stairs cupboard, as part of the (very protracted) process of putting a downstairs toilet in there.

She found, shoved to the back of the cupboard, forgotten about, and smelling of me (I'm sure that's a nice way of putting it) my football kit, unused since March.  Seeing it there, unused, and obsolete now, got to her.    I was never very good at cleaning the bag out.  My football kit would sometimes stay in there from one week to the next, abandoned the minute I got home.  I loved pulling on my astroturf shoes, driving to the pitches, warming up, the whole thing.

It really gets to me too, if I'm honest.  In the shed is a climbing rope, a backpack full of sport climbing kit - quickdraw clips, chalk, carabiners. In the loft is snowboarding equipment - my beloved board, boots and, most treasured of all, my Flow bindings.  Sad as it may be, like many blokes, I love buying new "kit" for hobbies.  It's part of the fun.

All of this is obsolete now.  Maybe we should get round to putting the good bits on Ebay.  Not the Flows though.  I don't think I could bear it.

Bitterness

This condition of mine, it's like it shines a light where there wasn't one before - some things become so obvious.  So many of the cliches, it turns out, are true.  None more so than - life is short.

And we spend so much of our time on pointless, needless activities.  A couple you know are in the midst of a painful, and incredibly bitter divorce.  You see how one of them is acting, every action designed to cause hurt to the other, and you think, my God.  The time, the effort, the money, the cost in emotional expenditure, is unreal - and unnecessary.  You see how the legal system is being used by one of them, every action twisted.  And if there's one thing that your time as a trainee solicitor taught you, it's that no-one comes out of litigation the better for it - the best you can hope for is to be put back into the situation you should have been in the first place.

And another couple are splitting up and dealing with it relatively amicably, like grown ups.  You're lucky that you're not, never will be, in that situation, but it's obvious which is the better route.

And more generally, it's easy, necessary, in your situation to let go of old feuds.  You realise there is no need for them, no time, nothing to be gained.

It's incredibly freeing.  Not that you should necessarily forget when people are mean, or cruel, or dishonest, or whatever it might be.  Let's face it, there are a lot of people out there who seek out weakness, want to take advantage of it.  So you can't be silly about this.  But all you've got time for these days is to focus on the positives.  But really, if only you'd known, that's all you ever had time for, anyway.

Pain relief

You wonder if the drugs that Dr D has given you for pain relief are almost working too well.  She monitors you regularly and closely, and if something isn't working will quickly tweak the regime.

And regime is the right word.  This isn't just a couple of paracetamol you're on - it's a series of different drugs, and it takes a while to get used to remember what to take when.  One thing is for sure, if you forget to take something at the right time, you pretty quickly know about it.

So, while you feel ok a lot of the time, it's at least partly because the effects of what is going on "in there" are being masked from you, although, as Dr D says - what is the point of being in pain.

You talk to J about the pills you are taking.  It turns out that she is on one of them as well - Oxycontin.  J says, I'm on 5mg - the doctor really doesn't want to increase the dosage as it's so addictive and difficult to withdraw from.  You say, gosh, I'm on 20 - they don't seem to have the same concern with me.  And even as you're saying it, you realise it's obvious why.  Because you'll never need to withdraw.

Ah.

Oh, and twenty thousand hits and counting.  Blub.  Thanks for reading.

Recovery

I've had a couple of people say - are you ok, you haven't been blogging much, I've been worried that you're not well.

Actually, it's the opposite.  I've been feeling so well, since recovering from the second dose of Docetaxel, that I've just been....living.  The last couple of weeks have bought little in the way of pathos.  It doesn't make for good writing, but it is...great.  

Gah

A cold crisp blue-skied morning means only one thing to you - snowboarding.  It's that time of year when traditionally, you start to think about making plans.  You check the snow reports, work out where to go, who fancies it, think of Val Thorens, your all time favourite resort.

It is galling then that, without doubt, boarding is off the agenda from here on in.  At one point, you had thought that if you took it really easy, just went out in the mornings and rested in the afternoons, you might be able to manage it.  But  reality has set in, and your body is sending you clear signals - if you can't get up the stairs in your house without breathing heavily, a ski resort is no place to be.

There are other little annoyances too.  Not the big stuff, which I've covered in this blog pretty comprehensively - the whole dying early, missing out on half a lifetime, lots of pain, unluckiness thing, and the distress it causes to people around you.

But the little things, silly, silly stuff.  Like, you're settled with your mobile phone company, you know exactly the right package for you.  You're happy with your bank, your internet provider, your house.  More rationally, I suppose you're saying that after years of not being there, you've got to a good place in your life - and with that in mind, it is the sickest joke of all that this should happen to you.

Realism

You get into a conversation with H about the future.  She says - you have to have hope.  You have to believe that there is a miracle cure out there for you.  And you think, and say, no - that's just the wrong way to think about things.  The medical advice has been clear.  There are no miracles around the corner.  It helps you to be realistic about this, to live your life knowing that time is limited - not short, maybe, but limited.

That's not to say that you're pessimistic.  There are things to be optimistic about - there is, to use that horrible phrase - "quality time" left, plenty of life to be savoured and enjoyed.  But there is no point in deluding yourself.  This is a terminal illness.  Fact, end of.  You got unlucky, and grim as that may be, it's the way it is.  Like John Cleese famously says in Clockwise - It's not the despair, I can take the despair - It's the hope I can't stand.

There are no Angels dancing on the head of a pin, magical crystals, or Red Indian spirit guides on your shoulder.  It's all about realism, and learning to live rationally, free of delusions, and self deception.  It's about not living in a fools paradise.  It's about not wasting time.

Kaff

Int tinternet brilliant?  You decide to find an old, dear friend, thinking it will be a long and arduous task.  But after five minutes with google, you have a potential email address, so tap away at the keyboard and send out a hopeful missive into the ether, cross your fingers.

The next day, you get a response, and Kathy is as delighted to hear from you as you are to have found her.  You send messages back and forth, drop your cancer shaped bombshell.  But it is lovely to be back in touch, even if the reasons for the shove in the right direction are grim.

You think, everyone should have a period like this, where they seek out old friends, although of course without the reason that spurred you on.  Cancer aside, it is a joyous thing to talk over email with, and sometimes see, lots of long lost pals.

Meanwhile, tomorrow is Chemo2.2.  Off we go again.

Hair

Two and a half weeks after your first dose of Docetaxel, and there has been no hair loss.  You think, maybe I got lucky on this one.  This is the one side effect you have been dreading, and when you analyse it you realise it's because it makes your condition so public, which is difficult to take for an essentially quite private person.  Mostly people are very nice and don't say anything silly, but to the odd thoughtless asinine comment, your old quick temper can flare.

Then, in the shower in the morning, you find little clumps of hair in your hand and think - oh.  It seems you will not be spared this indignity after all, and you sigh to yourself.

In the hospital, for pre-chemotherapy, you go for bloods, and the nurse says - you look well.  You smile at her, grateful for the affirmation.  She is quick, efficient, friendly, sending you on your way with a sympathetic pat on your shoulder, and once again you are touched by the supportive gesture, the kindness of strangers.   Then there is an X-Ray, and, waiting, you text Gav and your brother D, each with their own troubles today.  It does you good to remember that life goes on, that the world doesn't revolve around you.  You walk - slowly, otherwise you get out of breath - to the restaurant.  You know all the shortcuts around the hospital now.  Wandering repeatedly has taught you the routes.  It feels like when you were learning to navigate around Cambridge, the shortcuts through your college or to lectures, but this time with a different, much less pleasant, purpose.  You sit with a coffee, amongst the families and groups of nurses, until it is time for your appointment.  It is nice to be lost, anonymous, for a while.  

H joins you and you see Dr G's registrar.  She says - your X-Ray shows you are stable, and catching your quizzical look, she says - stable is good.  We'll know a lot more from the CT.  Otherwise, she says, things seem ok, we'll see you on Friday for Chemo.  

On the way out, H bumps into a friend you haven't met before.  The friend says - I'm sure that they can make you better.  And there it is, the old temper, as you snap - I doubt it somehow, then amble away, leaving a trail of greying strands in your wake.

Don't stop movin'

H says, you're so upbeat, it's amazing.

The worst thing about this new treatment is how well it's working.  For little parcels of time, whole minutes even, while occupied with some task, you forget about cancer, before reality creeps back.

At S's party, all the kids love the disco, have a great time.  They dance unashamedly, squeal with delight when S Club 7 come on.  There are no lessons to be learnt or meaningful, philosophical points to be made - it is just wonderful to see their joy.

Only love can break your heart

You see Mrs M.  She says, oh, you look well.  You know, when I saw you in July, I didn't think you'd last the summer - and you are grateful for her honesty, rather than telling you what you might want to hear.

You say, I think the treatments I'm getting are doing a good job, and you talk about the NHS, and the different system in the US.  Mrs M says - they dread getting sick over there you know.  If you don't have the right insurance, you don't get treated.  And you think, actually, that's right.

You have lots of friends from the US at work, and healthcare is a big issue for them.  Insurance is expensive, but without it you don't get treatment.  If you were in the States and didn't have the right insurance, there would be no Dr D, and no Dr G.  There would be no GP, chemotherapy, radiotherapy, pain control, the list goes on.  Or, if you understand it correctly, there would, but you'd be looking at remortgaging the house, and leaving debt for your family to cope with.  It doesn't bear thinking about.

You say goodbye and walk slowly back to the car, cocoon yourself inside, press play on one of DJ Viv's CDs.  On the way home, kept company by St Etienne, you feel bad for ever having complained - about public wards, or waiting, or an early morning CT scan.  You count your blessings, and think, thank God for the NHS.  For all that it is, not unlike yourself these days, a bit shabby, and frayed round the ages, you have been taking it for granted.  But actually, like the support network of people around you, when you think about it carefully, you run out of superlatives to describe it, and as you turn onto your road, you realise that you have the stereo turned up to 11, and are singing at the top of your voice.

Docetaxel - 3

We go to see Dr D for our regular chat.  You say, I'm feeling really chipper.  The pain is under control.

She says great.

There is a long pause.  You make another appointment for two weeks.

You only think short term right now, but today feels...positive.  Maybe, just maybe, docetaxel is doing some good.

You go out and have a very, very nice lunch.

A tale told by an idiot, full of sound and fury, signifying nothing.

For me, cancer came out of nowhere.

As I've written about quite a lot, my life and it's various routines were pretty settled.  Family life, looking after the kids, football, work, little trips away starting to become a reality again - thinking of getting back on the snow more, maybe taking up golf, running up and down 6 a side pitches for as long as my knees, and a grumbly ankle, would let me.  It might seem limited, humdrum, but I was at the stage of my life where I knew what I wanted, mostly had what I wanted, looked around me and pretty much liked what I saw.

I had my routine, and friends, both people that I saw regularly - people at work - and people that I didn't see very often - my college mates say, mostly London based.  But I was as sociable as I wanted to be, although I'm sure a little more wouldn't have hurted.  Then all of a sudden, this was all torn asunder.  I mean, there were signs.  The cough that wouldn't go away.  But you start to justify these things to yourself - ok, it's...a cough.  Or, I've got flu, whooping cough, or a change in the weather.  But my routines didn't change.

The GP sent me for an X-Ray.  It came back with a "consolidation"  Even then I wasn't worried, following the GPs lead, because he didn't seem that worried.  He explained that a consolidation could easily be something like pneumonia.

Then one night, I woke up with difficulty breathing.  We ended up calling an ambulance - even their reaction was comforting, as, although they certainly didn't say as much, I got the distinct impression that they thought I had overreacted a bit, and that I needed nothing more than painkillers.  I sat in an A&E bed until about 5 in the morning, by which point the painkillers seemed to have done their job, I felt a lot better and went home.  In the meantime the A&E doctor told me I had a collapsed lung.

At this point though, the GP signed me off work, referred me for investigations and generally started to take everything a lot more seriously.  Investigations were more x-rays, a bronchoscopy (which I referred to before), blood tests and a CT scan.  From my own research and talking to the GP, I knew that cancer was a possibility, but lots of other things were more likely - tuberculosis, pneumonia, sarcoidosis.  In particular, younger people tend not to get lung cancer, it's an old persons disease.

But of course, it turned out to be as bad as it could be - cancer, which had spread and therefore couldn't be cured.  So, following that trip to A&E, I haven't been back to work.  It is so strange to have your routines ripped away from you.  One day I had my little life, my well worn path through the days and weeks, my touch points.  Then literally within 24 hours, all of that was taken away, to be replaced with a slowly unfolding nightmare, where I had to relearn all the rules, to learn to play the game all over again.

Take all your chances.

Docetaxel (again)

I think I've been fooling myself.  I'd heard, read, that Docetaxol (the current chemotherapy drug) was easier to cope with than Cisplatin (the previous chemotherapy drug).  The thing is, being blindfolded and attacked by a bitey, psychotic hover-monkey would be easier to cope with than Cisplatin.  Being locked in a room with that guy with the beard and bad breath who KNOWS he's right and that you HAVE to listen to him - you know, the one who lives a few doors down - would be easier to cope with than Cisplatin.

You get the idea.

I guess I thought Docetaxol would be a walk in the park, that I'd be up and about next day, no problem, sail through it.  Well, actually, yes, ok, it is easier than Cisplatin (see above - monkey/bad breath man), but all I can say is, if you remember nothing else from this blog, be nice to people who are going through chemotherapy.  Look after them.  Because if this is the easy one....

Curiouser and Curiouser

It is funny how people show their concern, their affection.  These days the two are almost one and the same.  Hannah, dearest Hannah, sends emails apologising for her emails, apologising for being back in touch, when nothing could be more lovely.

Others, geographically closer, say - lets meet up, let's have lunch - are you up to it?  Your brother D rings with details of his complicated life, always amazing you with his stoicism, determination.  He drives for hours to help, never complains.  Emma and Claire and Sarah, and others, say, how can we help, what can we do.  Andy A has his role, and is, like Owen Meany, custom made for it, a Rolls-Royce.

Before chemotherapy, you meet old work friends.  You miss the people, some you have come to trust implicitly.  You miss the mental stimulation, the gossip, the infighting, the routine.  You miss Andy A's complete disregard for social norms, everyone pretending they can't see him as he bunny hops around the building.  You miss JC's principled, intellectual approach to requests and problems, JM's blunt, effective drive, and the energy of the place.  You miss, above all, contributing.  Now, you do not contribute, only consume, resources, time, effort.

Slowly, you walk to the ward, offer your arm to the nurse, disappoint the lady next to you by not wanting to talk, content for today with introspection, your own thoughts.  Another lady, opposite, spends an hour complaining, almost literally non-stop, breathing perhaps through her ears.  Then, marvellously, she says - they moan too much in this country.  You are unable to suppress a snort of glee, although as the lady looks at you curiously, it thankfully turns into an extended coughing fit.  The nurse comes over says, are you ok - and you smile and say, quite genuinely, oh yes.

This extended notice period, at the end, is so curious, so precious - and your mind goes back to a time in France when someone once said to you - this beautiful day is a gift from god - but something tells you that it's no more and no less precious than any other day, after all.

It is a time to impose order on a sometimes messy, haphazard life.  Sometimes, actually mostly, even in the quiet solitary daytime hours, you are overwhelmed.

Docetaxel

Back to Dr G.  Researcher P, of course, wants your blood, so this comes first, along with questionnaires about pain and how your bowels are working.  For all that you are used to being poked, prodded and generally messed about with, it is still strange to discuss and identify your poo shapes.

Then, you run through the chemotherapy options with Dr G.  As so often, by not thinking about it, putting it to the back of your mind, the answer has quietly presented itself and seeped through - the trials are just that, trials, tests, experiments.  They are the very definition of a lack of a guarantee of any effectiveness.  And given the travelling, and general inconvenience they present, they're not for you.  Talking through each option with Dr G, he seems to agree, and in the end you decide between you to follow one of the established "second line" options, a drug called Docetaxel.

This can be given at your local hospital, and will, depressingly, cause hair loss this time.  Hat shopping beckons.  There may also be more nausea, which had begun to feel like a thing of the past.  But you can only think positively - you are so well cared for it is ridiculous.  There are people itching to help, and all you can do is sit in front of the fire, tap away on the keyboard, allow yourself to be looked after, draw comfort from it all.

D & G

Back to Dr D, from Macmillan.  Increasingly, Dr D and Dr G are your medical rocks.  Dr D is endlessly patient and understanding.  You never feel rushed, your questions are taken seriously and given consideration.  You feel there is nothing you can't ask, that nothing is too much trouble.

You talk about pain, and Dr D suggests, as expected, to up the dose of the main painkiller to combat the now constant ache in your back.  Then, out of nowhere, you ask about end of life care - what...is it.  What happens - where would it take place.  And Dr D says, well it's up to you, but here - in the hospital you are in - is always a possibility.  As you ask questions, you realise that you're a little tearful talking about this - and to your surprise you see that Dr D is too.  Somehow, her reaction is remarkably comforting, and it feels as if this interaction is more human and less...clinical...than so many others.

The day before, after working hours, you had dropped an email to Dr G setting out what happened at the appointment in London, asking for a time to talk through the options.  By 9.15 in the morning, you have an email from him, and an appointment for the next day.  You say to H - wow. 

The core team of people around you is something else.  They do everything they can, and more besides.  You feel protected, cared for, cocooned.  Like everything that can be done, is being done.

You can ask for nothing more than that.  It's just such a shame that - alas - none of them has a magic wand.

Movember

A fine Movember fundraising effort from Mike Rocha....

http://mobro.co/mikerocha

The spiel from the Movember people is as follows:
 
Your donation will support world-class men’s health programmes that combat prostate and testicular cancer. These programmes, directed by the Movember Foundation, are focused on awareness and education, living with and beyond cancer, and research to achieve our vision of an everlasting impact on the face of men’s health. 

These funded programmes are spread across the UK - please visit the Funded Programmes page for all the hairy details: http://uk.movember.com/programs.
 
Progress report Day 1: Beard gone.
 

Trial

Up to London to see if there are any medical trials which might be suitable.  The legendary DJ Viv sends through CDs, a playlist from the party, arriving seconds before you leave, and Morrissey and Sum41 sit incongruously side by side in the car with you, curiously uplifting as you fly along.

Our appointment is at 2, we check in at 1.30, and wait.  As you sit with a coffee, you realise that you don't have any hopes for today, none - the positive way to look at it is that if anything comes out it is a bonus.  They call you for bloods - always, always bloods - then back to the room to wait, and wait and wait.  Occasionally a nurse comes into the room, whispers - calls is too strong a word - a name and disappears again.  Eventually, by the time you are hungry and dispirited, she whispers your name.

You and H follow the nurse, she takes your height and weight, then without any explanation, leaves you in another waiting room.  After a while, another nurse shepherds you, again without communication beyond a sad little smile, leaves you in a hot, close examination room, disappears through an adjoining door.

Through the door, you can hear loud talk, laughter, a little party to which you are not invited.  You wait, sweat a little, wait some more.  Eventually, the laughter stops, and the door slowly opens to reveal two doctors.  They come in, and the first one, whose name you don't catch, sits down, says, er, my boss isn't available right now, so I've come in to talk to you.

He asks you questions, examines you, listens to your chest, moves your arms around a bit.  Somehow it feels perfunctory, like he is going through the motions, and at any moment you expect his next question to be - do you like arm wrestling, or, what's the capital of Kenya.  Then you sit back down, he looks at you and says, we don't have any trials which would suit you.  Then you talk a bit more, he says, oh, we might have something - just let me talk to Dr B.

He goes out with his quiet mate, while you sit and wait and look at the walls.  Then he comes back, says something else, goes out again.  Eventually he comes back with the boss, Dr B, who sits down, says, we have a couple of things which might suit you, then explains it all very quickly using words you don't understand.  You don't even know how many options she has given you - 3?  4?

There is a long pause, while the three doctors look at you expectantly.  You look at H, whose eyes are wide, and you think of your brother, say - right, I didn't understand a word of that.  Can you go over it again, slowly.  Dr B starts talking again, and you interrupt, question, say tell me that again, again.  You suspect Dr B isn't used to being spoken to, cross-examined, like this.  And you think, like I care - it's my body, the rest of my life, not hers.

Eventually, you think you understand what you're being offered.  And frankly, the options are pretty poor.  The best one seems to involve coming up to London every week for 18 weeks, every side effect known to man, nausea, hair loss, skin rashes, diarrhoea, take your pick, and about a 20% chance of it actually doing you any good.  You say, well, thanks for your time - we'll go away and think about it.  The first doctor says, ok, oh - can you just have a blood test before you leave.  You scan his face for a little grin, expecting him any moment to say - ha ha only joking, fooled you - come join the party!  But he doesn't, just hands you a little bag, starts to give you directions.  You cut him off, say, thanks but, it's ok.  I know the way.

What do you see?

Dr D put me forward as a subject for a local medical study, into painkillers, and the effects different ones have on different people.  So, earlier this week, a medical researcher, P, came round, asked me a lot of questions, filled in a lot of forms, and went away again.

It got me thinking as to what people see when they meet me for the first time.  I think old friends probably see the same old crotchety me, just in different - let's face it, much worse - circumstances.  They want to help, and it is very difficult for people to come to terms with the fact that, particularly if they live any distance away, there is little they can do except let me know they're thinking of me.

But what about new people, people I'm only now meeting for the first time?  It's difficult not to categorise people when you meet them, to reduce them to a single point (e.g. 'the chap who's got cancer') , in fact it's human nature.  So when P was here I wondered if she saw me, or H for that matter, or whether she saw victim, victim's wife and so on.  

After the party, I said to Andy A, it was great to meet X and Y, did they enjoy themselves?  He said, enjoy is probably too strong a word - it was good for them to meet you though, I think they just felt a bit sorry for you.  That's an entirely normal reaction - you'd have to be pretty hard hearted not to, and it was a pleasure to meet them.  But it made me focus my thinking, and as you can imagine, I don't want people to do that, to feel sorry for me, to think of me as just a condition.  It's inevitable, and I shouldn't spend time worrying about it - but this blog is becoming like a strange (and cheap - great!) form of therapy for me, so there it is, it's out there.

To develop the theme a bit, when I ask friends how this is going or that is going, sometimes people reply, oh, it's insignificant compared to what is happening to you, I won't bore you with it.  But actually, I love hearing the gossip, what's going on, whether it's the big stuff, or the real minutiae.  It makes me feel like I'm still connected to, part of, the outside world.  Like there are parts of me that are still normal.  Right now, that's all I want, and all I ask for. 

Phases

There are noticeable phases with this....thing.  I think some, particularly at the start, are probably the same for everyone - you know, shock, disbelief, hope that something has gone awry and they've got the wrong person, anger, and so on.

And then it turns to letting everyone know, which is pretty horrible in itself.  Then there is a practical phase, dealing with the administrative side - telling work, getting used to the new enhanced medical rhythm, thinking about money.  Trying to work out what the future holds.  And in particular, getting used to your new, very much not-enhanced self, feeling your body change, getting used to what you can and can't do.

It seems the party was a bit of a watershed, and I have entered a new phase.  Put simply, increased back pain has bought more, stronger, painkillers, which seem to mean I want to sleep a lot more during the day.  I am hoping this isn't a permanent phase, or, more likely, I can learn to manage it better - I am very aware of the need to get out, and live at least some form of normal life.  I think this is what people mean when they say you have to keep positive.  It turns out that simple sentence, trotted out at the drop of a hat, encompasses a whole range of things you learn about as you go along, and yes, it really is as important as they say.

Do you expect me to talk? No Mr Bond....

In the hospital canteen, it looks to you like a man has died, without even finishing his coffee.  He is not moving, and his head is thrown back, mouth open.  No one pays him any attention.

We are beset with a thicket of appointments.  First, Dr D. She says, how has upping the painkillers worked?  You say, well, there's less pain, but I'm a zombie.  I can't even keep up with the plotlines on Eastenders.  She gives you a look which says - that is serious.  She suggests an alternative to the drug you are on, slower release.  Over the coming days, you find that it works well, and you feel like you are back on the planet.  Then, she takes your blood sample in preparation for the brief chemo session the next day.

At the chemo session, the nurse says, oh, I just need to take a blood sample.  You say, hang on, I did that yesterday.  She goes red, says, erm, it doesn't give us everything we need, and you think, well, what was the point of that then?  So, they take your blood, send it for testing, wait for the results, then prescribe the drug - the evil Zoltar - you all know you're here for.   There are no toxic drugs today, and you decide to think of this as positive, there will be no lost, hopeless, hellish week.

The ward is particularly grim, busy, packed.  The man next to you, within four feet, is at deaths door, he looks and sounds it, practically smells it.  Opposite you, where Bill once sat, is a chap younger than you, slumped in his chair, eyes continually scanning the room in search of an escape route.  Often, his gaze rests on you for a minute, just as yours does on him, sizing you up, trying to work out how old you are.  He looks like the stuffing has been knocked out of him.  He looks like the man in the truck has run him over and got the spade out of the boot.  The drugs dripping into his arm look very familar to you, Cisplatin, Pemetrexed, and you know what that means.  His journey is your journey, maybe a month or two earlier.  You are silent, solitary, companions, each unwilling to acknowledge the other.  On the road from time to time you will look over your shoulder and see him, never speaking, his eyes fixed on you for any clue to his own future.

Around the room there are similar chairs with similar, older, people slumped, staring into the middle distance, resigned, not searching for a tunnel like your friend.  In the corner, a man is unable to control his burping.  This is not a nice place to be.  Normally you can blank it out, retreat inside yourself.  But today you can't ignore it, it seeps under and over your Englishness, your stoicism, and once that is breached there is nothing.

You have been on wards like this before, like when you were admitted after the first chemo session, they are becoming sadly familiar.  There is something about the way the NHS does it, horrible lino, no separate rooms, curtains pulled around beds for private consultations that everyone can hear, reliant on us all pretending we are deaf.  It is awful, all about money, not dignity.  Here, writ large, is your future.

Later, that day, you attend a pre-radiotherapy session.  The doctor says, we will need to do a CT, and you say, you can't use the results from a couple of weeks ago?  In the end they do, adding some x-rays, and a tiny tattoo spot on your tummy.

The next day, at 8am, you return for the radio itself.  They will target your hip, where there are "lesions" - you have never heard that word used in a positive context - which are contributing to your back pain.  The chairs in the waiting room are a mean little joke, incredibly uncomfortable, and it is difficult to believe they are meant for cancer patients who so often have back pain.  H, as always, is there, steadfast, by your side.  She looks tired, careworn, and you think - she deserves better than this.  Then, the nurse calls you in.  She sits you down on the bed, says delicately, we'll need to loosen your trousers, pull them down a bit.  You respond honestly - say, I've had so many procedures, you can't embarrass me, just do what you need to do.  She smiles, connection established.

The radio machine is bought into view, as you lie, face up, legs slightly apart.  For a second you are reminded of James Bond, the famous scene where Sean Connery says, do you expect me to talk?  And Goldfinger replies, no Mr Bond, I expect you to die.  Right now, given the choice between facing a Bond Villain wielding a big laser, and cancer, it's a no brainer - at least with one you'd have a fighting chance.

Then, almost before it's started, it's over.  On the way out of the department, a sign reads - "There are currently 0 mins delay.  We apologise for the delay", and you smile for the first time in days.

It is difficult to know how much the radio will help.  Your body doesn't know what to do anymore, how to react.  Painkillers constipate you, or make you feel you're not really there.  Your thermostat is on the blink, so you shiver, or sweat, or both.  Zoledronate makes you feel like you've got the flu.  In your mouth is a metallic taste, but that's ok because mostly you don't want to eat.  Nights are either fine, or not fine, broken by trips to the loo, or constant sweating, or eyes wide open at 1am.  You can't climb the stairs, even at half pace, without wheezing, coughing.  What is this thing?  Incredible, the speed, scale, the power and ambition of it.

Back in the restaurant, when it is all finally over, the man lets out a choke, then, head still back, starts to snore loudly, openly.  Looking at him, you decide this is a good thing, as it requires no action from yourself.

Walking

It is incredible how quickly things change.

At the moment, since the weekend - I got overexcited and suspect I stood up too much - I am hobbling about like an old man.  It's probably a combination of muscle tiredness and the cancer in my bones.  Whatever it is, I feel like I'm barely recognisable not just from last year, but also from last week.

I have always loved to walk.  Given the time, I would happily drift around London for an hour or two, working out the routes from Waterloo to Tottenham Court Road, or one of the company's offices, or - way back when - from Arnie's and my flat in Bethnal Green to Liverpool St, Bank, working my way slowly down the Central Line.

Bits of London I know as well as a cabbie, although vast swathes are blank to me.  I am the same with Cambridge, Lincoln, bits of York.  The routes come back to me like a memory palace, and remind me again, just in case it were needed, how lucky I am  to have lived, for the most part, the way I felt like living, so often not following the quick and easy route - in this case, usually a tube ride - and doing things my way.  An enjoyment of walking, coupled with a natural curiosity, enjoyment of solitude and fading into the background - maybe I should have been a private eye.

It is ironic then that currently - and hopefully it's temporary and not a permanent state - that even this pleasure is denied me.  Cancer wants to take me apart, bit by bit, piece by piece, deny me old, simple pleasures.  It is important to fight back, as long and hard as possible.

Seeing Dr G and the specialist nurses at the last appointment, they urged me to up the painkillers, that there's no point in being in pain.  I have done so, but I feel like a wraith, transparent, an observer not a participant.  And I am reminded strongly of Mrs Dubose from To Kill a Mockingbird, who, in pain from a terminal illness, had become addicted to Morphine, and wished to die free from it.  I will have to find someone to volunteer to read to me.

Support

A mail arrives with bad - the worst - news.  The wife of an old friend from the dim and distant past is in the same position as me - cancer has snuck up on her and spread.  What an evil thing this is, quietly, disgustingly, doing it's work before it's announces itself.

They say that misery loves company - well, not in this case.  I want no-one else to go through this, no-one.  Especially not someone I am connected to, now doubly so.  I have never met, and know little about K, save certain family details, and that she has exquisite taste in film.

But, speaking directly to K now, the point of this post is to send you strength and support, hope that things go absolutely as well as they can, let you know that I am thinking of you, just like everyone else you know. 

Results

We see Dr G for the results of the CT.  He says, things have progressed - if only slightly.  The chemo has been working...although we had hoped it would do rather more.

It fits exactly with how I am feeling.  I have been very wiped out since the weekend, and in particular have a lot of backache, which is making walking difficult.

He says, we will look for a clinical trial, although there are no guarantees we will find one suitable for you.  And we will send you for radiotherapy.  He pauses and says, it's not playing nicely - and that's how it feels, it seems aggressive, in a hurry.

So, a change of tack, if not entirely unexpected.   Dr G is doing his best for me, helping me to battle this thing, but sometimes his face says it all.

Nudge

I've had quite a bit of feedback on the "take all your chances" theme.  A lot of people have said, your situation has given me a kick, a nudge, to do x.  When I hear that, it makes my day.

This morning, talking about the party, my Mum said to me - what a lot of lovely friends you have.  She's right, and I'm lucky.  And if my situation helps any of them, you, in some way, by creating impetus, bringing the precarious nature of our happiness into sharp focus, or causing you to put important safeguards in place, then I couldn't be happier.

Against the prevailing background of gloom, there are a lot of rays of light, great big ones.

Party

I am...overwhelmed.  I just wanted to say thankyou to everyone.  So much time and effort went into yesterday, and I hope everyone that came enjoyed it as much as I did.  Thanks to those that travelled (not least from Canada and Switzerland), organised, checked and rechecked, made playlists, bought photos,sorted out photographers, made and gave to collections, booked items from the bucket list, booked children's entertainment, looked after children....the list goes on.

On the subject of photos, I think I made a bit of a rod for my own back - I didn't realise how many embarassing photos of me there are out there.  Hoist by my own petard. 

Arete

I once heard of an interesting way to make a quick decision.  If you can't decide between two things, they say you should toss a coin.  Not because the coin will give you the right answer, but because as it's in the air, you'll realise which way you're hoping it will land.

The other day, I was wracking my brains trying to think of my favourite ever place, ever.  Which is kind of silly really, I was clearly over thinking it.  Like with the coin, you should instinctively know these things.  And of course I did, but was subconsciously discounting it as not being, well, good enough.  How daft is that?  Like I was looking down on myself.

Anyway, just off the coast of Weymouth, lies the isle of Portland, connected to the mainland by Chesil Beach, beloved of geography teachers, as a classic, and huge, example of longshore drift.

Portland itself has a bleak kind of rugged beauty, and is a very well known area for sport climbing (sport, as opposed to 'traditional', climbing is where people have been up the routes with big drills, and inserted metal bolts you clip into as you go up).  I have been to Portland many times, and spent many a happy day especially in the Blacknor South area, scrambling between the low graded (easier), imaginatively named areas. Lunar Park, Triple Slabs, Diamond Boulders, but in particular the Fallen Slab.

Feet from the sea, there is nothing there apart from, well, great big rocks.  The arete itself makes you feel particularly exposed, but the exhilarating setting means you - and absolutely everyone else - climb it every time you come to Portland.  To be halfway up that route is to be without a doubt at my favourite spot in the world.  You are climbing right on the edge of a rock face, thinking carefully about clipping the next bolt with the sea birds crying and if you're lucky spray on your ankles.  

Once, probably after the 15th time or so I climbed it, as I eased back to the ground I realised why I liked climbing, and this particular route so much - because when you're up there, particularly when you're leading and therefore don't have a rope above you, only below, you are so focused, you don't think about anything else - not work, not the mortgage, nothing.  It's meditation, psychotherapy and healthy introspection all rolled into one.  Tony Soprano didn't need all that time with the shrink - he just needed a weekend with Climbing Dave and me on Portland. 

Contact

Everyone, but everyone, is in contact right now.  It's lovely.  As I said before, as far as I'm concerned it's a huge compliment, and hearing how long lost friends are getting on is just the nicest thing.  If it takes me a while to get back to you, please don't be offended.  Take someone who isn't naturally particularly sociable, then suddenly reintroduce all, and I pretty much mean all, their mates from the last 20 years.  You get the idea.

Don't let it stop you though.

Pseudothingy

We saw Dr G last week, before chemotherapy itself.  He said we will have the fourth session of chemotherapy (which took place on Wednesday) and then there would a CT scan, then a rethink.

He says, it's difficult to tell what's going on - hopefully this CT will give us more of an idea.  It's possible that what we saw before was Pseudoprogression.  If you understand correctly this means there is scarring, caused by a good reaction to treatment, which also looks like progression of one or more tumours.  So, pseudoprogression looks bad...but is good.  It seems that even oncology consultants don't have all the answers, and at times are making a best guess based on all the evidence available.

As ever, the chemotherapy floors you, leaves you tired, nauseous, listless, on another plane.  It is possible, even likely, you won't get Cisplatin again.  Thank ****.  Then, this morning, the CT scan.  No breakfast and warm iodine before 9am.  Urgh.  The nurse is so nice to you, it stops you in your tracks.  Nothing, but nothing, penetrates like the kindness of strangers.

Chemo 1.4

Here we go again.

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.