Monday 28 October 2013

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. 

Sunday 27 October 2013

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.

Wednesday 23 October 2013

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.

Saturday 19 October 2013

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.

Thursday 17 October 2013

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. 

Wednesday 16 October 2013

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.

Tuesday 15 October 2013

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.

Monday 14 October 2013

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. 

Thursday 10 October 2013

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. 

Wednesday 9 October 2013

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.

Tuesday 8 October 2013

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.