Life in quarters

Life in quarters
French version

Saturday July 2, 2016

trojan-horse

There’s been a lot of bad news in the UK recently – political, economic and meteorological.

So when I saw the consultant this week for my first check up since the end of my radiotherapy treatment after the recurrence of prostate cancer I feared the run of bad news was about to continue.

But in fact, it was encouraging news.

The blood test shows there has been a definite response to the RT. The PSA level, the marker they use to detect the presence of cancer cells, has dropped by nearly 90% (for those who like precise figures it’s gone from 0.259 ng/ml to 0.028 ng/ml.)

So far, so good.

Now it’s back to the waiting game – another check up in 3 months to see what the PSA level does. What we hope for is that it stays stable or even drops still further.

I can’t pretend that it isn’t sometimes pretty trying (for my partner and me) to live life in 3-month instalments – especially as we’ve been here before.

After the surgery to remove my cancerous prostate in January 2015, my PSA dropped like a stone from 18.96 to 0.05. But nine months later it had started climbing again and I was on the road to more treatment.

So you can see why I’m not exactly dancing down the street.

The sensible bit of your brain says the only rational response is to keep calm and carry on. Worrying about it really isn’t going to help. Seize the day. Drink deep from the cup of life and enjoy.

But in the darker corners of your mind the doubts fester. Give them half a chance and they will dash out and expose themselves like demented flashers. And sometimes the devils of doubt can be cunning little beasts.

They wait until you’re tired or struggling with a difficult piece of work before they rush out and start jabbing you with their keen, well-honed anxieties.

Unfortunately the further I travel into the land of uncertainty the smarter the demons get. They’ve moved on from the early days when they would simply scream incoherently about impending death.

Now they whisper poisonous reminders about what happened before. They insist it will happen again and recite with glee the grim side effects of the hormone therapy the doctors will press upon you as the final line of defence.

Their latest ruse is a sort of Trojan horse technique. They find a vivid, naïve unicorn of a dream, which has nothing to do with cancer, and smilingly encourage it to romp across your dreamscape in stunning colours. In 3D with rich 5.1 digital dolby sound. The experience is so vivid it half wakes you.

“Well now this is an exciting dream,” you say to yourself in a curious semi-conscious state.

And at that moment the little devils of doubt flip open the door in the side of the dream Unicorn and come pouring out to run riot over your defenceless semi-conscious mind.

But these days I know how to fight back. The trick is to wake yourself and get up, no matter how exhausted you feel, to read something.

At first the words  flow through your brain as meaningless gibberish. It’s like trying to recite poetry to an unruly class of bored teenagers.

You may have to read the same page 3 or 4 times but eventually the teenage demons begin to realise that you’re ignoring them and they drift off to find someone else to torment.

And then dawn breaks and it’s over. You’re left with a sort of emotional hangover as the small but painful wounds the demons of doubt have left heal up.

Like an ordinary hangover it makes you irritable and not much fun to be with. If it’s a bad one, it may take several days, but it does pass.

And then you’re ready for another drink from the cup of life. The grim political landscape gives a bitter edge to its taste but fortunately I rather like strong, bitter tastes.

Life isn’t about waiting for the storm to pass – it’s about learning to dance in the rain.

About time

About time

Sunday May 29metronome

As long as I can remember I have had an aversion to clocks which tick loudly.

Some people are transported on a journey through time and memory by a particular taste or smell. Proust had his crumb of Madeleine cake dipped in tea. For many of us a certain piece of music has the capacity to take us back to an exact time and place.

For me it’s the sound of a slow ticking clock.

It takes me back to a sun filled salon in my grandparents’ flat in Caen in Normandy. But it’s not a warm memory. It brings back a vivid recollection of an intense emotional state – a feeling of boredom and frustration. There is a sense of being stranded in an infinity of time – of waiting, waiting.

It is after lunch. It is Sunday. Somewhere in the spacious flat my grandparents are resting. Outside there is brilliant sunshine, but the town is dead in that uniquely moribund way of French provincial towns on a Sunday afternoon.

On a sideboard a massive black marble clock ticks relentlessly. I sit there willing it to tick faster for this dead time to pass, for the boredom to be over and for something to move, to happen.

As I write this on a still, grey Sunday morning in Paris, maybe 50 years later, I can hear another clock ticking softly but steadily. Today time does not seem infinite. Today the clock seems to be counting down.

It is counting down the seconds, minutes, days, weeks until the first blood test, the first possible sign that the advance of the cancer has been slowed or perhaps even stopped.

But then the clock will start ticking down to the next test, the next verdict. As a cancer survivor, you are never acquitted. The verdict is always the ambiguous “not proven”.

And still the clock ticks on, counting down, point by point, my diminishing potency. Each tick seems to mock my increasingly desperate hope that as the effects of the radiotherapy fade, the process of soggy decline may yet be reversed.

Of course the clock ticks for all of us – we are all counting down in one way or another. But most of us, most of the time, don’t hear it or don’t listen to it. For a cancer survivor it’s hard to ignore.

As I have explained before, I am not a religious person, but I find I am developing an increasing appreciation  of faith – that is faith as the capacity to believe something true even when your feelings and the evidence, as you see it, constantly whisper in your ear that you are deluding yourself.

But evidence is evidence, right? Facts can be verified.

Sadly, in the Land of Uncertainty things are not so simple. Truth, like Beauty, is in the eye of the beholder – clouded and unreliable as it may be.

It’s a sublime paradox.

Faith, and its twin brother hope, would be welcome companions just now. If I could just believe a bit more, then I would have faith. If I were just a little more optimistic, then I would have hope.

It’s like the old joke prayer: “God give me patience – and I want it right now.”

I suspect the solution lies in learning to accept the sound of the ticking clock, but to interpret it in a different way. It’s not counting down, it’s counting up. Every tick is another tick on the calendar. Another day to be appreciated, to be relished.

The ticking of the clock simply marks the inescapable rhythm of the delicate dance of life. And everything goes better with a beat.

 

New perspectives

New perspectives

Saturday May 21

Absence they say makes the heart grow fonder. So may I say how lovely it is to be here tapping away for you.

Sorry for the recent silence, but the intensity of the last ten days since my radiotherapy treatment finally came to an end has left precious little time for writing.

Though I never went away, the end of my journey across the RT quarter felt like a return home after travels in far lands.

And as always, coming home after a long journey gives you a new perspective on things.

Like how much time we have to spend doing important but inconsequential stuff – hoovering, washing up and earning a living.

Step off the treadmill and that project which seemed so vital and urgent can seem much, much less so. It takes a conscious effort to summon up the enthusiasm and energy required.

The steady return of the rush and tumble of everyday life in the land of uncertainty brings many joys, but a few frustrations as well.

Wouldn’t it be great if people actually did things right first time instead of needing several phone calls and emails to undo their cock ups and do it right this time. Or is it just me getting old?

Physically I do feel a bit older (though I’m hoping that given time this will diminish).

An afternoon nap has become essential. Miss it and you risk falling asleep for a long stretch when you get home early evening – so reducing the chances of a good night’s sleep and increasing the chances of slipping into a vicious circle.

And when I’m out and about I suspect I scan public places with the eye of someone older.

The grumbling of the bowels has faded to a muttering, but the frequency and urgency of nature’s calls mean that I find myself constantly noting where the nearest toilets are.

I have read about it before, but I now truly appreciate the scandalous lack of public toilets in town centres.

The physical stamina is returning well, though I find you have to build in little rests here and there and be careful not to run into the red zone. If you do, you can find your battery can very suddenly go from 30% to dead flat.

And I’m not a pretty sight when my screen is a featureless black slab apart from a “charging” symbol.

But all this is as nothing next to the sheer thrill of freedom.

Nearly forty years ago (gulp), with a Euro Rail  pass in my pocket and four ten dollar bills in my boot in case of emergencies, I went on a long journey behind across Eastern Europe behind the Iron Curtain.

After three fascinating weeks in the drab grimness of neo Stalinist Hungary and Ceausescu’s Romania I arrived off an overnight train on a brilliant sunny morning in Italy.

I was totally dazzled, beguiled and a little bewildered.

Suddenly the world  was full of colour again, and adverts, and cars, and well dressed people, and laughter, and smiling faces and music and more cars and tasty food  and style and passion and life.

I may just have celebrated my 57th birthday,  but inside I’m 18 again.

360 minutes 

360 minutes 

Wednesday May 11 Session No 33

Today’s blog comes in two parts. Just 360 minutes apart, but from two different worlds.

4pm

headwind

I had been warned about this, but I hadn’t expected it to kick in today.

Not today, the day of days, the day of the 33rd and final session of treatment.

But right now, sitting here in the radiotherapy waiting  room for the very last time, I feel no sense of achievement or relief.

Yesterday’s heady anticipation of freedom eludes me today.

Now I struggle to identify my feelings as I sit here smothered by a stifling blanket of fatigue. There’s only a sense of emptiness and of valuable time wasted – waiting, waiting, waiting.

I have been warned that feelings of fatigue can actually peak after treatment finishes.

I have been warned about post treatment blues – how weeks or even months after treatment people who have had radiotherapy can start feeling very low.

But do the warnings (“Don’t worry , it’s quite normal”) help just now ? Do they hell.

I think I shall stop writing for now – this is the RT quarter after all. The weather can soon change.

10pm
Victory

I’m standing waiting for the bus on my way home.

Six  hours later and after one double espresso (a rare treat given the state of my bowels), many incredible comments, texts and emails (thank you so much), plus a host of support from Facebook friends ( you should know that every ‘like’ is a shot in the arm), plus a few glasses of wine and some excellent conversation over a delicious dinner (thank you Carol and Steve ), the world seems a much, much better place.

And that’s the life of a cancer survivor.

Don’t be scared if you suddenly find yourself cycling into a vicious headwind and your legs give out on you. Dig deep, reach out for help and wait for the wind, or the road, to turn.

A few encouraging words, a change of perspective can make a world of difference.

I may be out on parole, but I am a free man.

And boy does it feel good.

Bring it on …..

Bring it on …..

Tuesday May 10 session no 32 (1 to go)

Version française

prison doorI have scratched my 32nd mark on the wall.

There is just one enema left in the box.

Tomorrow they will rattle the keys, the lock will click open with a sweet, sweet sound and I will walk out blinking, slightly stunned, into the daylight .

Maybe you think I’m exaggerating to make for a better read – I promise you that (for once) I really am not.

Tomorrow around 5pm when I complete by 33rd and final session, I will feel like I’m being released from prison.

Free to get on with my life, free to travel, free from daily reminders that I’m being treated for cancer.

And I suppose like all prisoners about to be released, I’m excited and a bit apprehensive.

Life inside is restrictive and repetitive, but you know what to do and where to go. You know how to play the system to keep the warders happy; you know how to score important little victories that put you momentarily in control.

Out there, beyond the Radiotherapy Quarter, in the Land of Uncertainty, things are more complicated. The simple certainties of Crossing the RT quarter will be replaced by the old confusing anxieties. When is the first test?  What will it show? Has the treatment worked?

I can sense all the old demands on my time starting to build up (thank you to all of you who have been so wonderfully patient).

But you know what? Standing here on the last sandy ridge of the RT Quarter I say: “Bring it on!”

I’m hungry to get back into the fray. I want those four hours of my day back, every weekday. I want to feel the hustle and hassle of a more normal life.

Even if I’m only out on parole, I shall be a free man.

 

 

The elephant in the room

The elephant in the room

Monday May 9 session No 31 (2 to go)

Version française

charging-bull

I think it’s fair to say that we know each other quite well now. This is after all the 36th time I have sat down to write for you. (19,970 words and counting…)

Soon, very soon, thank goodness, this journey will be over. So I think it’s time we talked about the elephant in the room.

Let’s talk about sex.

Consider this as your official warning – this is likely to get a bit explicit for some tastes.

But I think it’s important to write about this because I think too few men with prostate cancer are willing to talk about how this disease affects their sex lives.

If you or someone you love or care for has prostate cancer I hope this will help you understand what you/he may be experiencing and what may be going on inside your/his head.

One big fat caveat before I go any further. I can only write about my own personal experience. That is specific to the particular treatments I’ve had and to my view of the world.  I suspect my experience will be recognised by a lot of people with prostate cancer, but everybody is different.

If your prostate is surgically removed (as mine was)  you can be sure of two things.

Firstly that your cock will be shorter – the process of removing your prostate means shortening your urethra and hence your cock.

And secondly that you will never, ever be able to ejaculate again.

The first really didn’t bother me, the second did – a lot.

I was dismayed how much I missed this quintessentially male activity; this very physical demonstration of one’s profound sexual and emotional feelings.

And because you can’t ejaculate any more you will find the nature of your orgasms has changed.

You may also have to get used to  being temporarily or permanently impotent. I’ve written about this before so I won’t go over all that ground again. I was lucky and my erectile function did return.

But in the months when I was impotent I made two important discoveries about sex after a prostatectomy.

Discovery No 1 : You don’t need a stiffie to have an orgasm.

Discovery No 2 :  To make the most of your new plumbing and wiring arrangements down below, you need to adapt to a new kind of orgasm.

Because if you pursue the traditional male climax of an increasingly frantic ascent to the top of the steps before a joyous descent into the water splash below, then you will be disappointed.

The ascent is short and when you push yourself off the top you find that the giant water flume has become a kiddies slide into a paddling pool. And somebody has emptied the paddling pool.

But if you relax and you are lucky enough to have a loving, patient partner and you’re ready to seek what I am reliably informed are more female pleasures, then some beautiful sensations await you.

Rebuilding your sex life in the shadow of prostate cancer is a challenge both for you and your partner. It takes love, patience and a capacity to laugh rather than cry at the inevitable mishaps along the way.

Some people have described the impact of prostate cancer as a direct attack on your sexual identity.

For me and a lot of other men that amounts to a direct attack on your identity as a person; regardless of how sexually active you are, your sexual identity is a major building block of your overall identity.

I would suggest that the best way to cope such an attack is to be flexible and adaptable. Don’t confront the charging bull – sidestep him.

Give up some of the old fortifications and with your partner build a new stronghold for your love.

 

 

 

 

 

 

 

 

 

 

 

Staying the course

Staying the course

Friday May 6 Session No 30 (3 to go)

Version française

As you can tell from the late arrival of this blog – we’re getting a bit demob happy here.

But hey , I think we’re entitled to cut ourselves a bit of slack. 30 down and just 3 to go! Statistically (and you know how much I love a dubious statistic) we are 90.9% of the way there.

And we’re doing just fine thank you. The fatigue is…. tiresome, but manageable. The bowels continue to grumble, but in a predictable way. But otherwise things are fine (touch wood) and and the morale is good.

Apart from one or two bad patches we’ve managed to keep in good spirits throughout this long, long journey  (when we started out I had the winter lining in my jacket, today I walked to the hospital in shirt sleeves).

So here’s a few suggestions to anyone starting out on a course of radiotherapy on how to keep cheerful.

These are in no particular order of importance – just as they occur to me.

Listen to music. Music has a wonderful ability to lift you up and transport you. I favour upbeat music, but if you actually enjoy listening to Leonard Cohen then go for it.  As I write this I’m listening to “The Return of the Avener” ( By curious coincidence one of the tracks features Adam Cohen, son of said, sad, Leonard)

Look at photos. Flick back through your photos to remind yourself of friends and loved ones and the good times you have enjoyed with them. On my bathroom wall I have a selection of photos which I look at every morning as I brush my teeth – it gets the day off to a good start.

Exercise. Try to keep physically active – getting those endorphins flowing is incredibly good for the morale – and there’s increasing evidence that exercise isn’t just good for your general health it also improves your chances of beating prostate cancer.

If you’re in to gyms or workouts, keep going (though be ready to reduce the intensity as your journey progresses). If you aren’t, make sure you get a decent amount of brisk walking in each day, use the stairs not the escalator or the lift etc.

And keep doing those pelvic floor exercises. They help keep you continent and they help preserve your erectile function. They really seem to help me. More info here.

Two things best avoided though: cycling on a hard saddle (things get a bit tender down there) and swimming (you need to be kind to your skin during RT and the chlorinated water of a pool is apparently best avoided). The RT nurses will give you some very neutral cream for your skin; applying it three times a day is a bit of chore but, touch wood, it’s worked for me.

Keep busy. It’s probably best to try to reduce to a minimum work commitments that you have to fulfill. But keeping busy with light duties is a good idea. Hey, you could even start writing a blog!

Stay engaged. There’s a big world out there – stay in touch with it. The news can be depressing so it’s a very personal choice  whether to follow current events (I’m a bit of a news junkie). But there are new films, plays, art shows, books and music out every week. Enjoy!

See people. Make a point of staying in touch with friends. I found it was great to arrange to meet up near the hospital after treatment for a cup of tea and a chat. (Thank you, all of you who went out of your way.) It’s good to share how things are going and to talk about everything else under the sun.

Be kind to yourself. There’s a lot of very conflicting information for all cancer patients about what you should and shouldn’t eat. I don’t want to get into that debate here.  All I would say is try to eat a healthy diet, but don’t beat yourself up. A little bit of what you fancy does you good.

Rest. The RT and the daily trips to the hospital will become tiring. I make a point of putting my feet up on the sofa and having an early afternoon nap every day.

There will be bad times.  It’s pretty much inevitable that at some point your morale will flag. Don’t panic. Reach out for sympathetic help from loved ones, family and friends. And remember it’s always coldest just before dawn. You’ll instinctively know when you’ve touched bottom and from there the only way is up.

There we go – good luck on your journey. And remember this is what worked for me, other things may work better for you. But keep working at it. Anything that helps put you in control is good news.