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.