Spine

In the hospital, they say, the tumour has spread to your spine, which is causing the weakness in your hand. They will give you radiotherapy to try and combat it.

There are no words, or poetry for this. There seems little respite or consolation from this thing attacking you from all sides. Outside, in the rain, your wife and family live their lives, burdened by worry. For now, you have nothing to give them, or anyone. It is a bleak time. Knowing you are loved, your head is still above the water. 

Progress

You see Dr D.  You tell her the pain has increased, and you discuss and agree how much to increase the painkillers by.  You say, it's not just the pain, explain that your right hand has gone numb, there is no strength in it.  

At the appointment with Dr E, Dr G's registrar, she says, I think things are continuing to progress, and you think, no shit sherlock.  You are shorter of breath than ever.  Dr E says, I'll send you for an x-ray, right now.  So she writes out a form, hands it to you, says I'll see you in a few minutes.  As you exit the room, H takes a look at you, shuffling slowly with a grimace on your face, says, do you need a wheelchair?

You take a deep breath, for once let your common sense take precedence over your pride, say yes.  H, face impassive, conjures one out of thin air.  You sit down, stare into space think - how did we get here.  But today it seems inevitable, long walks down endless hospital corridors are out of the question.

H wheels you along, and for a second you're glad she can't see your face.  Immediately the world changes.  You become invisible, mostly people don't look at you, while you look at the floor.  

Later, Dr E looks at the x-ray result, says, yes, there is definite progression, and you think, in more ways than one.

Lucky

In some ways I am lucky.  I am, always have been, naturally self-reliant, happy with my own company, solitary, a listener, not a talker.  

These days, when I'm not feeling up to much, I am happy pottering around at home, with painkillers and the fire for company, while H dashes about, sorting everything out.  She says sorry if anything is less than perfect, and I repeat, over and over, stop apologising, you're doing a brilliant job.  

It is lucky that I like my own company,  which for better or worse over the years has manifested itself in many different ways.  I've never been much of a drinker either, and on nights out would often be the first to leave, happy to drift home before the serious drinking started - I can still see the uncomprehending faces now - Tim, Andy B, Gav.  But we're just getting warmed up, they'd say, while I was slowly turning white in the corner, patting my pockets to see where my tube pass was.  

And these characteristics allow me to cope now.  It's important to talk, I get that, and I don't bottle anything - or at least, I try not too.  Sometimes, right out of nowhere, something sets me off, and I'm suddenly overwhelmed, and there is nothing to do but let it out.  I'm pretty sure this is normal.  And while the knowledge of my condition never leaves me, not for more than a few seconds, I can cope because I often get absorbed by something else - a favourite old book, the football on the radio.  And because I have thought it through, and accepted what is going on.  Yes it's unfair, yes, it's not right, but it is what it is.  And the light it has shone on many of my relationships is something extraordinary to behold.  My wife, I run out of superlatives for.  But there are many other little acts of kindness, none of which go unnoticed, toward us.  And it is these that make me amazed that, solitary as I am, I've somehow managed to collect an awful lot of friends along the way.

If I knew then....

...what I know now.

How often have you heard that phrase?  It used to puzzle me.  I think in my youthful arrogance, I thought it was nonsense.  After all, what on earth could years and years of practical experience, and the chance to learn from your mistakes, give you that you couldn't get from a book?  Eh?  Oh.

As I'm still actually - relatively - young (although I'm probably technically classed as middle aged, I really don't feel that like mentally, although physically I feel like I'm 104) really I'm still at an age where I should be learning every day.  I am, I guess, although mostly about a subject not too many people want to become familiar with.

I think it's particularly relevant when it comes to choosing a partner.  So many people seem to make rash decisions, which have an enormous effect on the rest of their lives, based on a pretty face or whatever.

And, with my wife, I'm no different, although as each day passes, I realise a little bit more just how lucky I got.  I was at first attracted by this huge smile and impish good looks.  It quickly became apparent though that there was a lot more there than that.  And these days, I am constantly taken aback by H's capacity to cope, work hard, juggle three things at once, not get exasperated by the hand she has been dealt (i.e. me).

I often talk about my support network.  And often, subconsciously, I mean H.

She really is amazing.  I am so lucky.  And if I knew then what I know now, I wouldn't swap her for anyone.

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.