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.