About time

Sunday May 29

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

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

Wednesday May 11 Session No 33

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

4pm

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

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 …..

Tuesday May 10 session no 32 (1 to go)

Version française

I 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

Monday May 9 session No 31 (2 to go)

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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

Friday May 6 Session No 30 (3 to go)

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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.

 

 

 

Travelling on

Thursday May 5 Session No 29 (4 to go)

Version française

You can tell we are reaching the end of this long, long journey across the Radiotherapy Quarter.

There’s a subtle change in the quality of the light and the air smells somehow different.

It’s rather like the way you can sense when you’re approaching the coast long before you can actually see the sea.

Except that it isn’t the tang of the sea we’re starting to smell. It’s something much stranger.

If you’ve ever lived or worked near a brewery or an oil refinery you’ll know the kind of smell I mean – one moment it’s agreeable the next it’s nauseating.

It’s the smell of the land of uncertainty.

In the seven weeks we’ve been walking across the RT quarter life has been pleasingly simple. You get up every morning, you put on your boots and you walk. The daily visits to hospital become tiring – at times it can get monotonous and depressing, but you know know where to go and you know what to do.

Now we know that when we get to the top of that final ridge, just ahead of us, right at the edge of the RT quarter, we shall look down on a vast new landscape.

But we’re used to travelling in the land of uncertainty. Anyone with cancer spends most of their time travelling through this country – a country of shifting sands and unpredictable, swirling mists.

It’s a land where you move, uncertainly, from blood test to blood test, from scan to scan, from consultation to consultation.

In my case it will be the end of June before we know whether the treatment has worked.

Even after Arnie has fired his last salvo next Wednesday his radioactive rounds will go on working for several weeks. In fact the radioactivity in your body reaches a peak after the end of the treatment before it gradually tails away.

This is why, I have been warned, that feelings of fatigue can sometimes peak in the two weeks after treatment has finished.

Then when the blood chemistry has settled down it will be time for the first PSA test and the first post RT consultation to get The Verdict.

I’m resolutely confident that the verdict will be positive.

And then the waiting game will begin. Three months if I’m lucky, one month if there’s any doubt.

The closer you get to the next test the more the uncertainty increases. The longer the run of good results you can put together, the higher you will climb in the league of confidence.

But it takes just one bad result to send you crashing down into the relegation zone of fear and anxiety.

I can still remember, too vividly for comfort, the sickening feeling last autumn, nine months after my prostatectomy, when my PSA suddenly spiked upward.

But I trust Arnie. He is a remorseless killing machine. I know that he will hunt down every last damn cancer cell and blast it with his deadly pump action shotgun.

There’s no hiding place from him.

We all live with uncertainty to some degree or another. It’s just that we cancer survivors are perhaps more aware of it than some.

But in that respect we are actually, perversely, fortunate. We don’t delude ourselves in seeking certainty in material possessions or dogmatic beliefs.

We embrace uncertainty and learn to relish its curious smell. We take nothing for granted. We seize the day, every day.

We drain the golden chalice of life, bang it down on the table and demand it be filled again.

And boy, does it taste good.

 

 

It’s a family affair

Wednesday May 4 Session No 28 (5 to go)

Version française

When you’re crossing the RT quarter, even in brilliant May sunshine, it’s tempting to curse your parents and their parents and their parents before them.

I’m sorry is that shocking?

If it helps to soften the blow, I also spend some time cursing myself.

Let me try to explain.

Many years ago my first real job in television was working as a researcher on the crusading consumer show “That’s Life!”. Fronted by Esther Rantzen (she of the teeth and the suggestively shaped vegetables), it was a nicely judged mix of the childishly comic and the dramatically serious.

For several weeks I worked on an item about how we should all look after our heart health by stopping smoking, taking more exercise and watching what we eat.

As part of my researches I went to St Mary’s hospital in London to talk to an extremely distinguished and knowledgeable cardiologist.

He gave me some excellent quotes on how we should all be doing more to keep healthy and avoid heart attacks. I scribbled in my notebook enthusiastically.

And then he paused, fixed me with a highly intelligent look and said:

“May I talk to you off the record for a moment?”

I put my notebook down.

“All this advice on diet and exercise is extremely valuable, but we do need to keep it in perspective. We have to be careful not to mislead people, to give them false hope.”

He observed my rather shocked expression and then continued.

“I would never say this on the record, but it’s pretty clear to me that the largest single determinant of whether you will have a heart attack or not is genetic. We can’t prove it yet, but as medical science advances I believe that it will become more and more obvious.”

Spin forward 30 years or so and you can see what he was talking about. Hardly a week goes by without some new report of how scientists have identified which particular kink in the twisted complexity of our DNA determines which diseases we are vulnerable to and even how youthful we look as we age.

I suspect it’s only a matter of time before we understand much more clearly why some healthy living people develop cancer or heart disease and while other chain-smoking kebab lovers get away with it.

As I’ve said before, I regard blame as a truly pointless human emotion, but if you wanted to hold anyone responsible for my cancer you should probably look to my parents, and their parents and their parents before them (or at least the configuration of some tiny corner of their genes).

And I should probably get an early apology in now to my children, my grandchildren and my great grandchildren.

All this throws up a host of very difficult questions, not least about free will and determinism, that I don’t propose to go into here.

But I would make one observation. It might be tempting to curse your genetic ancestry but I for one certainly won’t.

I am delighted and proud to have inherited my parents’ intelligence; my mother’s remarkable will power; my father’s generous good humour (and, I suspect, his way with words).

Like people, your genes (for now at least) come as a package.

I’m not religious, but I like the thought behind the so called Serenity Prayer  by the American theologian Reinhold Niebuhr:

“Grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

 

 

 

 

 

Once a year

Tuesday May 3rd Session No 27 (6 Left)

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I have been looking forward to today with childish glee.

Every day when I climb on to the treatment table the radiologists take me through the same routine.

They know who I am, I know who they are, but they are obliged to take me through a formal identity check.

“OK Simon, please could you tell us your date of birth and give us the first line of your address.”

Usually I rattle off the mantra – today I was able to add a few flourishes.

“I was born on this very day 57 years ago in 1959. My mother tells me that it snowed, as my father drove her to the maternity hospital.”

I don’t know whether it’s by accident or design, but I find it reassuring that the hospital administrative machinery uses your date of birth as a key identifier. It’s certainly easier to remember than my 8 digit patient number (I tend to transpose two of the numbers)

It helps preserve your sense of identity as the great rumbling machine that is the NHS passes you from the hands of one doctor to another.

“I am not a number! I am a free man!”

It’s certainly better than the BBC where I used to work. There you could hardly move without reciting your staff number or writing it in the appropriate box.

It’s getting on for 30 years since I worked there, but I can still reel it off: 256983J. (And I still feel as if I should snap to attention and salute when I recite it).

A few more numbers: May 3rd is the 123rd day of the year and we all need to get a move on – there are only 236 days left until Christmas.

I share my birthday with Israeli Prime Minister, Golda Meir; soul singer James Brown (who survived prostate cancer); political philosopher, Niccolo Machiavelli and boxer Sugar Ray Robinson. The comedian, actor, author and playwright Ben Elton is exactly the same age as me.

According to the horoscopes for we all have or had instinctive affinity with numbers which makes or made us adept with finances and budgeting.

I wish.

Now, if you will excuse me, I have an urgent appointment with a birthday cake.

Twice upon a time

 Monday, May 2^nd Rest day

French version

No treatment today as it’s a bank holiday. So once again today’s blog is by my French partner who is matching me step for step on this journey through the RT quarter.

All our lives, we are taught that you only get one chance.

“You’ll never get a second chance to make a good first impression.” (David Swanson)

There is no going back in life. There is no return. No second chance. (Daphne du Maurier)

“You don’t get another chance, life is no Nintendo game.” (Eminem)

Our lives are ruled by the cult of performance; you must always strive to do your best, first time.

That’s also what most people think about prostate cancer. It can only happen once! If only it were true!

For us, it’s clearly not the case. For those who don’t already know, we first met a very long time ago, long before computers and smart phones (though there was colour television – we aren’t that old!) Then we each lived our own wonderful lives crowned by two beautiful children (four in all!). And then after 32 years we found each other again. So we’ve had the good fortune to have lots of second first times.

And they lived happily ever after and had lots of …

Aye, there’s the rub. Lots of what?

That was before! Before the arrival of the cancer that has rather taken the shine off the fairy tale.

It’s like a double take in a film. It’s a rather interesting technique (in French ‘un plan doublé’). You see something disturbing without picking up on it. The camera acts as if nothing has happened and carries on. Then suddenly it realises what it has just seen and turns back to look at the disturbing thing a second time, watching for your reaction.

(This technique was apparently first invented or first used by Stan Laurel, of the celebrated Laurel and Hardy double act, in a scene where Laurel fiddles with his tie.)

Sadly there’s nothing really very funny here. The camera’s glassy eye has just made us realise that all was perhaps not as idyllic as it seemed. It’s as if the word “cancer” has started flashing over the head of the main characters. How could it possibly be that we didn’t realise sooner? The answer’s simple – because it can’t be seen. It would be wonderful if you could detect prostate cancer by looking a man in the eye just once, twice even. Perhaps that day will come but for now, only a PSA test lets us go back to the previous shot and spot this vile blemish in a young man, entirely without symptoms.

And then unfortunately this sodding cancer has no shame in turning up for a second time, just when we thought we had got rid of it for good.

It’s sad, infuriating, intolerable!

And what’s more in the future we’ll have to go on checking to make sure it really has gone.

What we really need is 24 hour security camera.

It’s a one in two chance. One in two!!

Come on now let’s try to be sensible. What were the chances that we would meet again and get a second chance, living in two different countries, after 32 years? One in a thousand? One in ten thousand, a hundred thousand. One in a million? And yet it happened.

So yes, we can believe; a one in two chance, that’s great odds – we’re almost certain to win.

And we could give fate a little nudge. Maybe we could cut out a few shots from the film. I would happily cut all the scenes where we see people suffering. But I would keep the smiling radiologists, always caring about our well-being. And I would add dreams – in colour, with relaxing music. And friends, lots of friends.

Hmm that’s better – that’s coming together nicely.

I have often thought that the French singer songwriter Jacques Brel was speaking about us when he wrote:

” I shall speak to you of those lovers
Who have twice seen their hearts ablaze.”

The song is called ‘Don’t leave me’ (Ne me quitte pas). But what we really want to say is: “Leave me! Get out, get the hell out!” And the sooner the better!

So back to our film. Time has passed – we return to the main characters. They may have twice as many wrinkles, but they love each other twice as much. And above all they have triumphed over this malevolent, cancerous crab.

It seems that the postman does always ring twice. Unfortunately, often, too often, cancer does too. But we will do everything we can to make sure this is the last time he rings.

There’s only going to be one end for this film and it’s going to be a happy ending.