Friday 30 August 2013

Diogenes

Dealing with other people's reactions is, if not the hardest part of all this, well, still pretty hard.

Because H and I live this every hour of every day, we are hardened to it now.  And mostly everyone treats me normally.  Sometimes when I meet people, especially for the first time, or at least the first time since diagnosis, I can see a little suppressed look of panic as to what to say to me.  I don't blame them.  I never knew what to say to people either.  Mostly, I just want to talk about the football, everyday stuff, although I'm very open and matter of fact about my condition and am very happy to talk about that too.

And it's great seeing friends, just being normal.  But sometimes, just occasionally, it's nice not to talk at all.  Not to be the centre of attention, the subject of conversations and sympathy.  Whenever I feel like this, I think of the Diogenes Club.

In "The Greek Interpreter", Sherlock Holmes describes this (fictional) club, where his brother often spends his time, as "the queerest [strangest] club in London", and as follows,

"There are many men in London, you know, who, some from shyness, some from misanthropy, have no wish for the company of their fellows...It is for the convenience of these that the Diogenes Club was started, and it now contains the most unsociable and unclubable men in town. No member is permitted to take the least notice of any other one. Save in the Stranger's Room, no talking is, under any circumstances, allowed, and three offences, if brought to the notice of the committee, render the talker liable to expulsion".

It sounds like heaven to me - not all the time, you understand, but maybe an afternoon a week.  Ironically, I suspect they wouldn't have me, as you could be expelled not only for talking, but also for coughing.

Looks


What I think most people find odd is that I don't look unwell.  The only difference - if I'm out of the house and moving about, so two weeks out of three - is that I've gained some weight, due to the fact I don't walk as much as I used to and don't play football anymore.  I glance in the mirror, and while I don't flatter myself that I'm Brad Pitt, think I look indecently well.

I shouldn't complain.  It is guaranteed not to be a permanent state of affairs.  But right now, I almost feel like apologising.

On the subject of staying well, H mentioned to me that maybe I should try some of the local "healing" groups.  I laughed out loud.  Crystals, chanting, healing hands.  I'm afraid I just...don't believe a word.  It is best - out of respect for the no doubt good, well intentioned people there (and who knows - maybe they're right and I'm wrong - more fool me) - that I stay away.  The last thing they want is a newbie, sat in the corner, smirking.

Tuesday 27 August 2013

Bucket


I am intrigued by the idea of a bucket list.  Everyone seems to have them, ill or not.  H - and pretty much everyone else too - says, do all the things you want to do.  So, you rack your brains.  Number 1, have two fabulous, nutty, kids.  Tick.  Number 2, be there for them.  Well, we might all have to moderate our expectations on that one.  Number 3, marry a lovely wife.  Ok, that should really be number 1.  Tick.

Beyond that, my problem - and strength at the same time - is that I was never particularly ambitious, I never wanted a big house or fast cars or power suits, or to be strutting around the City.  I always wanted to get into Cambridge, was desperate to.  That turned out pretty well.  Tick.  But I never wanted a high powered career, nor, as it turned out would I have been suited to one.  The reason I say it's a strength is that sort of self awareness can - and has in my case - save you an awful lot of bother chasing things which you don't really want in the first place, but feel you should want.

I had a look at flying in a Spitfire.  What Englishman, secretly or not, doesn't want a "go" in these iconic machines?  It turns out that, as they were never designed as anything other than fighter planes, it's illegal to carry passengers in them in exchange for money.  You can fly near one - i.e., be a passenger in a helicopter which flies close to the Spitfire itself - but for some reason that doesn't appeal quite as much.

Beyond that, at the moment my ambitions are to stay as well as I can for as long as I can.  And to put lots of photos up in the hall.  And to see all my friends.  Perhaps other stuff will occur to me along the way.  Part of me  - the 19 year old, insecure part - feels like a failure for not being more ambitious with my list.  And the other part, the older, and (hopefully) wiser part, thinks, whatever, relax, you're doing fine.

Monday 26 August 2013

Monday

Rosa mails you, says I like your blog, you haven't lost your sense of humour.

It's only common sense to have a laugh about this where you can.  You think of something that Clive James once wrote -  that common sense and a sense of humour are the same thing, moving at different speeds. A sense of humour is just common sense, dancing.

(For anyone who is interested, the above quote from the brilliant Clive James can be found in context here).

Sunday 25 August 2013

Fighting Talk

You are now entitled to certain benefits, like a Disabled Persons Railcard.  On the form it says - how many years would you like the railcard for, 1 or 3.

You tick 3, think, you're not getting rid of me that easily.

Saturday

Suddenly, everyone wants to see you, and the effort and the calls are a huge compliment, and you think, what amazing people are around me, I'm so lucky.

Your timescales are shorter now, and the minute you accept that, think, Ok, it is what it is, life becomes easier.  Everything concertinas, your life is on steroids.  Dan, Elly, Mike, Kathryn, Ben and Lewis come for the day, and it could not more relaxed, a lovely day catching up, talking about old times, do you remember.  In the afternoon, everyone goes for a walk, and you collapse on the bed, asleep within seconds.

People seem to understand that sometimes - often - you get tired, exhausted, quickly, and are learning to take rest and hide away.

Then, they are back, having tea, saying goodbye.  As you hug everyone and wave them off, you think once again just how lucky you are to have this fortress of people around you.

Maybe the rest of your life will be like this - better.

Thursday 22 August 2013

Thursday

After a full week, you are back to life.  It's still tentative, your temperature is a constant watchpoint - chemo takes down your defences, and any spike has to be dealt with straight away, you can't just take a couple of paracetamol and sleep it off.  You live with a thermometer in your ear.

Jo, from Macmillan, comes to see you.  At first  you don't know what to say, then you click with her, perk up - questions come tumbling, flooding out.  As you talk, a thought comes - you haven't been making memory boxes or writing notes for people, or preparing for every eventuality -  and subconsciously you knew this was the right approach.  Consciously, it crystallises why - because not every waking moment has to be about this.  It can't take over - there has to be time for life, not preparing for the worst, tying up loose ends.

Once every moment becomes about transition, cancer has won.  There has to be time for watching a favourite old movie, seeing a mate, reading the paper, slumping on the sofa in front of Tipping Point.

All of this tumbles out, and Jo beams and says yes yes yes, you've got it.  You don't need the affirmation, but her smile is warm and genuine, and for a second you know you are dealing with this thing inside you the right way, and then there is nothing more to say.

Monday 19 August 2013

Monday

The pattern is definetley established.  Chemotherapy is going to knock me for six for about a week, and at the end of that week I hope to have two weeks where I feel ok.  This morning, for the time since Wednesday, I leave the house.  H and I drive to a cafe, sit and enjoy the sun.  After days in the house, I genuinely marvel at the minutiae of life around me, how bright the world is.

As we drive, for a second I am reminded of a scene from the Shawshank Redemption.  Brooks, upon finally leaving the prison he has spent his life in, cannot adapt to an unfamiliar world - "I can't believe how fast things move on the outside".  This morning, that's how I feel.

It is our anniversary, and as we sit with our coffees, it is apparent to me that marrying H was absolutely the best decision I ever made.  Once again, I am blessed.

Sunday 18 August 2013

Sunday

I made it down the bottom of the garden today, which I guess is something (Colours!  Flowers!  Bees!  Don't get me started on bees!).  Tomorrow, maybe I'll even venture into the outside world.  For now, this is what counts as progress.

Friday 16 August 2013

Friday

Early indications are better.  No throwing up yet....although I still feel like I've been run over.  Still, take the positives.

Wednesday 14 August 2013

Rules

You know you have those books - the rules of work, the rules of life - and so on.  In no particular order, and just a month or so in, here's my first draft - The Rules of Lung Cancer.

1) It's not fair.  It's. not. fair.  It may help if you stamp your foot whilst repeating this.

2) Everything changes.

3) Cancer will be the first thing you think of in the morning, the last thing you think of at night, and pretty much everything you think of in between.

4) Because everything is suddenly about you, you have to keep reminding yourself - actually, it's not.  Other people have their lives too, the world doesn't stop.

5) If you're someone who doesn't like being the centre of attention, well, tough.

6) While you are having chemo, your timetable is dictated by chemo.  As far as you can tell at this stage, first week bad, next two weeks good.

7) You had better not mind needles.  In the arm if you're lucky, in the bum if you're not.

8) You had better not mind taking lots and lots of drugs.

9) You had better know where the sick bowl is.

10) You got insurance, right?  Right?  Anyone?  Bueller?

11) You had better be prepared for a blizzard of information on treatment, benefits, services available to you, times, dates, who will be involved, median survival rates, pills you will have to take, and much much more.

12) Everyone around you is hurting.  Try not to have any family and friends, as the more people close to you, the more people you'll hurt.  But try to have lots of family and friends.  You'll need them.

13) Everyone wants to talk to you, some people don't know how.  You know what - this is fine.

14) People genuinely, desperately want to help.  Learn to let them.  It helps you and your family, and you can't help thinking it helps people to help - knowing there is something they can do.

15) If you're going to get a cancer, make it another one.  I should make clear, any cancer is horrid - just unbelievably horrid.  And I wish anyone going through cancer all the luck in the world.  Just in terms of survival rates - lung cancer, well, it ain't great.  Really.  Once it's spread (metastasised) throughout your body, that's when you're in real trouble.  And - here's the thing - with lung cancer, you typically don't get symptoms, and therefore you don't get diagnosed, until you're at stage IV, i.e. - it's spread.  Many other cancers have much better survival rates, but I guess we would all agree, there's no easy option here - except don't get any form of cancer at all.  That seems like a good way to go to me.

In case I haven't already made the point, my cancer has spread - bones, liver and lymph nodes.  But the plus side is, the chemo seems to be having a positive effect.  So there is light.

16) Take all your chances.  No really, take all your chances.  Both before you get it, and (you won't - I'm sure you won't) after you get it.  Live a little more day to day.  I think this one, buried all the way down at the bottom, is the key.

Wednesday - Chemo 1.2

I am in for the second chemo session.  The line is in my arm, cisplatin and pemetrexed doing their stuff, with lots of fluids and anti-sickness drugs as well.  Based on last time, the reaction over the next two days will be crucial.

Andy A comes over, says, you look well.

Good.

5.30pm.  Home, all well so far.  I had so many visitors today it was almost embarrassing (but great!), and lots of supportive texts.  It helps, it really helps. 

Tuesday 13 August 2013

Tuesday

The world you inhabit now is different to the one from just a few weeks ago.  You miss playing football, planning ski trips, thinking of going climbing again.  Even the mundane things, like walking to work, getting a coffee in the atrium, bumping into a pal and having a moan.  Most of all, your world now is older.  So many people around you, in the places you go are retired, or sick.  You are in and out of hospital, the GPs, Macmillan, the pharmacist.  As Withnail's Marwood put it - we are drifting into the arena of the unwell.

Waiting for X-Rays, you make polite chit-chat with people twice your age, 80 year olds, whose race is run.  They have what you have, or something else, or another cancer, and therefore maybe, just maybe, a chance.  From nowhere an unworthy thought wells up inside you, and you push it back down.  Whatever the thought is, it's a waste of time.  Everyone deserves their chance, and in the end you think - good luck to them.  If there is anything cancer has taught you, it's that there is no point in bitterness or jealously - or to be more specific, there's no time for it.

Someone arrives and has their x-ray done before all of you, without queuing.  One of your new friends says - "They're from the ward, they get priority.  I don't know why they should".  Perhaps he hasn't read the script.  Then he says - "I shouldn't be sat here.  Think of all the things I could be doing".  And you say nothing, think - too fucking right.

Monday 12 August 2013

Monday

The start of a serious medical week.  Today, we went to see the lovely Macmillan doctor.  This is an ongoing keeping in touch is-there-anything-we-can-help-with kind of thing.  She is knowledgeable, easy to talk to, and has already tweaked the drugs I am taking, with good results.  I also had a keeping in touch session with the nice Occupational Health lady from work.

Tomorrow is pre-chemo.  This is a blood test, x-ray, and talk with Doctor G.  I will tell him about (although I am sure he already knows) my admission to the ward following the first session of chemo.  Perhaps he will change something - the anti-sickness drugs, the amount of drugs they give me at chemo?

As an aside, before the third chemotherapy session, I will have a CT scan to check what effect the chemotherapy is having on the tumour(s).  The first CT scan involved being passed through what looked like a big doughnut while warm iodine was pumped into me.  This was extremely odd for two reasons - 1) it made my feet tingle and 2) for about 5 seconds I thought I was going to wet myself.  Afterwards, the nurse told me this is entirely normal, although when I asked him if he had ever had warm iodine pumped through him, he gave me a funny look, murmured "no", then took a keen interest in something on the other side of the ward.  Note to self - don't get lippy.

Then Wednesday is chemo itself - Chemo II, Chemo:Judgement Day, Chemo Returns (etc etc).  This involves a line in the arm (cannula), lots and lots of "Clear Fluids" (I think this means water) to flush my system and keep my kidneys working, and two drugs called Cisplatin and Pemetrexed (details here).  Cisplatin is apparently made from platinum (according to T, who knows about "this sort of thing").  The more time goes on, the more I am becoming a burden on the state.  Finally!  Wednesday will be an all day affair - from 8.30 til 4 or 5, so it gets a little boring.

The big positive from the first cycle - ignoring the throwing up and drugs-in-the-bum thing - was that I feel like the symptoms eased, certainly for at least ten days.  The cough and pain in the right side were certainly better.  And since I left hospital, I have felt - well, if not great, if not even good, then ok, as well as can be expected.  I still feel tired, and - like an old man - benefit from a nap in the afternoon.  But right now, I'll take "as well as can be expected".  I'll take it all day long.

In other news, I am reading "Adrian Mole - The Prostrate Years".  Perhaps I should have guessed from the title that he gets (prostrate) cancer.  Argh!

Friday 9 August 2013

Friday

As chemo round 2 looms, I am getting ready to be "dosed" again.  Perhaps I should hire Danny (link here) to take the hit instead of me.

"Look at him - his mechanism's gone".

Thursday 8 August 2013

BC - 3 - Leaving


I wrote the following over 10 years ago.  Stratford has probably changed a lot since then.  Also, I have changed a lot of the names and details below.



Stratford is a dump.  When you say to people you live in Stratford they look confused for a second and say something like - isn't that a hell of a commute?  Then you tell them it's East London and there's another blank look and the conversation moves on, to Putney or Highgate or Ealing.  You walk from the station along a shabby main road on uneven tarmac and think of Belsize Park, or Cambridge or Lincoln.  Then into your flat, which you've finally paid to get decorated, and listen to the neighbours kids singing to themselves next door.

You're happy though, because you're waiting to leave.  A few months ago you decided that you had to take control, and sat down and thought, what can I do?  What do I want to do, what would I be good at, what would make me happy.  And you decide on computers, a graduate training scheme at the age of 27.  So you check the advertisements, and there are a couple of jobs, and you apply, go for interviews, get a job, and suddenly it's all sorted.  You grin to yourself and let out a long sigh that seems to go on forever, feel a weight lift, feel a foot taller.

But there are complications.  Like your flat - well, rent it out, easy.  The job's in another city, so what, move there.  And the other job you got, another recruitment job you were headhunted for while you were applying for the IT jobs, and you took because it seemed better than what you were doing, and you couldn't be sure you'd get the computer job.  So you have to start there - got to pay the mortgage, work for two months then hand your notice in.  It's kind of stressful because on the first day you know you're going to hate it, but it's kind of not because when alls said and done you know you're leaving in two months and what do you care.

The boss is a c*** from the word go.  An Irish guy, famous in the industry for being a c*** of the first order.  He tells you, we work from 8.15 to 7, 8 til 8 on Tuesdays.  You'll always have work to do.  If you don't have any work, find some.  There are always more people to ring, we work as a team and we work hard.  No excuses.  Every two days he calls you in and gives you a dressing down - he seems to have a rota for who is next.  The atmosphere in the office is awful, and there are rumours about people being called in and sacked on the spot because Irish doesn't like them.  And if you weren't leaving you'd be a nervous wreck within days.

Tuesdays are special because on Tuesdays you get to work even harder - for the good of the team.  The first time you hear this you breath out a bit too sharply through your nose and Irish looks at you hard, and you hold his gaze thinking - this is a joke. On Tuesdays, after six, you have the pleasure of ringing people up who are on the database but haven't spoken to for six months, a year, two years.  You get to ring these people up at home, while they're working late, while they're having a drink, at any time they don't really want to speak to you, and they don't know who you are.  You get to be really false and really pally, because Irish is listening, and see if these people who were vaguely thinking about moving jobs a year ago want some impromptu career advice, and you get to miss your evening doing it.

You like a couple of the people you work with, Gary and Cat.  But mostly they're typical recruitment consultants, all pally and smiles and full of advice, but with hard looks, lean faces, all fuck-you underneath.  Gary and Cat are different though, genuine, too nice for this game, and within a few days they're telling you to beware of Irish, beware of Sam and Keiron and Sharon, the over important secretary.  Irish is a c*** they say, and laugh when you feign surprise, giggle, say - he's a real c***.  Cat especially is unhappy there, hates the hours, hates the fact that Irish sees her weak points, sees the fact that she can't give up her job because of her mortgage, pushes her, exploits her.  And Gary is a failed Barrister, and is deep in debt from Bar school and is caught in a trap.

Then one day at 7.30 in the evening, Irish calls you into his office.  It's your Nanna's birthday, and you've just come off the phone from her, watching Irish out of the corner of your eye, watching you while you're on the phone.  You go in and he says, this is never easy, but this isn't working out, so we're going our separate ways.  I want you out of the building in twenty minutes.  Do you have anything to say.  You think - well, shall I call him a c***, then know that there's no point, he must have heard it all before, and you would have handed your notice in in two weeks anyway.  So you just say - there's nothing to say, and you get up, pack up your stuff, look at Gary and Cat's bewildered faces, see the faces of the others turned carefully away, and leave.

It's good because they have to pay you your notice period, and it's nice being paid while you're laying in bed, thinking about leaving, planning to buy a ticket and go to Greece, bum around for a couple of weeks.  A week later, Cat calls you and says - I've joined your club.  You say what, and she says - he's sacked me.  You look at your watch and it's before nine in the morning, and you curse Irish and talk to Cat, tell her not to worry, that you'll come into town and buy her a drink.

Then you're in Greece, an unplanned holiday and nobody to go with.  But it's travelling and you know you'll meet people, the ubiquitous chilled out Aussie travellers, perfect antidotes to stress and London and terrible Irish bosses.  You spend a night in Athens, then get a ferry in the morning to Ios, the party island, and spend a lonely couple of days there, sunbathing, trying to talk to the kids who just drink and drink and drink, get a ferry to Naxos.  It's a great place, a place you came eight years before with Lucy, and it's got good memories for you.  You find a place to stay, spend a couple of days wandering around with a German hippy called Manuel, a nice guy who it's good to chill out in the evenings with.  When he leaves you wish he could stay, and you swap email addresses, wave him off on the ferry, wander on your own back to the place you're staying.  You're drunk and you crash on the bed, fall into an uneasy sleep.

The next day you wake up and, as if by magic, three Aussies have appeared, and they're sitting around, all just met, playing cards and shouting at each other - you cheat you cheat, and falling about laughing.  You say hi, have you just arrived, and they pull you up a chair and deal you in.  You all go your separate ways that day, but arrange to meet for dinner in the evening, and that night it's great, you all click with each other, Michael, Sonya, Brigitte, and out of nowhere you're on your biggest bender for years.  You have a beer over the meal, all polite and deferring to each other, then another and another and another, and it's a great idea to go to a bar and then another and another.  Suddenly it's six in the morning, and you're stumbling up through the streets of the old town trying to keep your voices down, feeling tired, purged, on top of the world.

The next day comes, you stick together, bumming around in the afterglow of the night before.  You stick together for the next week, go to Koufonissi, where the beaches are near-perfect, all white sand and water that only comes up to your knees fifty yards out, come back, and then you're waving goodbye, back in Athens, London, Stratford.  Making plans to leave.

Leaving Stratford is great, because it's all fucked there.  Nothing more poetic than that, because it's a place without poetry - not a bad place, just a vast slum, dead and empty, a ruin.  The pavements are uneven, and the air is grey, and everywhere smells of kebabs, or hopelessness.  Even the trees look forlorn, as though they're on the verge of uprooting themselves, and sloping off into the night, in search of Richmond Park or the New Forest.  You shove your stuff into black bags and hire a man with a van, a solemn looking Sikh guy, who turns up on time and doesn't say much, except how much he dislikes the area.

He drives you out onto the endless ring roads North, then North-West, and you pass through familiar Wembley. You crane your neck to get a last look at the place as you go, feel something you can't put your finger on, and Mr Singh looks at you, but says nothing, turns the radio up.  Then down through the West to Kew and Richmond, memories of Hannah now, seeming like an age ago, and then you're away, on a great road, fast and empty, and as you speed away from London you both relax a bit, and he asks you why you're moving away, tells you that he likes his job, hates London, wants to go home to Pakistan, a nice country, beautiful.

Then, you're there, the new house, and Kal and Simon are inside and smile hellos and give you a hand with the stuff.  Kal gets talking to Mr Singh in Punjabi, and Mr Singh gives him a tape of Asian music.  Kal thanks him politely, and before you know it he's away, driving back to London.  You wave goodbye, and watch the van disappear round the corner of your new road, pick up the last of the black bags from the garden, take them to your room upstairs, close the blue front door behind you.

Wednesday 7 August 2013

Wednesday

You go to the pub with Mark and Paul, and it's good to see them, nice, normal.  Paul has a theory - that the whole cancer thing is unfair, that only decent people get cancer, and he says to you - that's your job over the next few days - prove me wrong.  Think of a c*** with cancer.

It seems strange, but you can't seem to prove him wrong.  Later you realise that it's probably because 
a) you don't actually dislike that many people; and
b) no-one deserves this.

He also says - make sure you're doing everything you want to do.  Again, it throws you, because the worst of it is - you already were.

Monday 5 August 2013

Sunday

There is pain in your bone in the right arm and ribs, and it spreads and worsens throughout the day.  It takes ten seconds to find the reason on the internet, and this time it's not something easily ignored.

Suddenly, this is real, immense and unavoidable, like a brick wall on a motorway.

You wonder how long you have.  Time is mocking you, dancing away as you reach out to it.  For a second, you cannot breath.  Then you refocus, and are back in the room.

Saturday 3 August 2013

Saturday - fitba

You take S to football at the local 6 a side pitches - the same pitches you have been running up and down - with varying degrees of effectiveness - for the last 12 years, and as recently as March.  Regular 6-a-side, climbing, walking and cycling to work - what could be healthier.

It is a beautiful morning, and lovely to be there, incredibly familiar.  The training session is always held on the same pitch you play(ed) on every Friday at 5.30.  This was your favourite of the many different regular games you have been involved in - the perfect antidote to the working week, a quick change and jog over, having a laugh in the sunshine, working off frustrations and aggression, a watershed from work to weekend.

S flits around happily and shows better ball control than you ever did.  At one point, he wallops the ball into the goal four feet in front of where you are sitting, then, beaming, runs forward, high fives you, and gallops off.  You want to bottle his smile, and that moment, and you are glad that he has gone, as you have to cover your eyes.

Thursday 1 August 2013

Thursday

All I want right now is normality, an absence of extremes.  Today has been wonderful, a quiet house, rest and the cricket on in the background.

Then, worryingly, I blow my nose and there is blood, a fair amount.  And two hours later, the same thing. 

Cancer is a learning experience, like any other, except, well - completely different from any other.  It's a journey that no-one wants to take, it's vast, it's scary, it's painful for everyone around you, and in the case of metastatic lung cancer, the survival rate tends to zero a bit too quickly for my liking.  

So, like any sane person when they have a worrying medical symptom I ring the hospital ask Mr Google.  This is a stupid thing to do - for example, when I was having investigations for my cough, I googled so much I ended up scared witless I might have something serious!  But in this case, unusually, I quickly find a reasonable answer.  From "Cancer for Dummies" (really) - 

"Bleeding: The cells that make sure you stop bleeding when you've been cut or bruised are called platelets.  Chemotherapy can lower the number of platelets you have, making you more susceptible to bruising, nose bleeds and clotting failure.  If your platelet count becomes dangerously low, your doctor may describe a drug that will help your body produce new platelets".

Fair enough.  Just in case, I ring the ward.  The nurse listens, asks a few careful questions, but doesn't think there is cause for concern.  If the bleeding doesn't stop, or persists, come in for a blood test.  Sounds ok to me.

You live and learn.