PC (as in Prostate Cancer)

Sailing away from It

 My wife nagged me.  It was wonderful.  This may require some explanation.

Just before Christmas 2009, convinced I was in remarkably fine health for a 62-year-old, I was diagnosed with advanced prostate cancer, an aggressive kind that had torn through the walnut-sized prostate itself and gone on to colonize my pelvis and surrounding lymph nodes. All without causing symptoms or even raising my telltale PSA level: one of the small percentage of “false negatives” produced by that otherwise useful test.

Two eminent specialists looked at the scan and biopsy results, shook their heads gravely and gave the same prognosis: get your affairs in order, if you make two years you will be lucky.  Sorry about that.  Made for a rather sombre Christmas.  The transition was brutal: from daily-jogging, borderline hyperactive fount of energy and cheerfulness that sometimes dismayed my family, just retired from an unloved career negotiating oil concessions, looking at the world as though it was newly created just for me—to terminally ill, all in less than a week.  It happens to many people, of course.  Like most of them, I imagine, I went through a phase of “this can’t be happening to ME”, as though one belonged to a somehow exempt class, as though my “me” was somehow special, not to say immortal.  Lots of food for thought, probably much of it predictable.

But something did not let me accept it.  Or It as I came to think about it.  I did not reason, just threw myself into new, long-term things.  Learning modern Greek,  starting research for a biography on a historical figure I had always been interested in.  And mainly, sailing.

I had sailed only occasionally, beginning on dinghies in the Gulf of Oman when we lived in Muscat 30 years ago, and loved it, not just as one likes a sport, but I felt that the intersection of wind, sea, and sky was where I belonged.  And then 30 years flashed by with us, our chattels, assorted babies who became children, all moving every few years (sometimes very few) from one country to another, with two evacuations from a war zone thrown in for variety.  Not much time for sailing, until this Christmas, when I woke up one day with the conviction that not only would I not go gently into anybody’s good night, but I would fight back, reject It with a rude denial.

Within a day I had combed the internet for sailing courses, registered myself and my slightly surprised son for a series of crew-level courses on the English coast, and signed up for a Day Skipper course out of Lefkada in the Ionian Sea just south of Corfu.  And with even more temerity, assumed that all that would have transformed me into a competent sailor by June.  I booked a 35-foot yacht to sail around the Ionian with my wife (a self-described “terra firma person” whose feet on the ground have provided a counterbalance to my aqueous nature over the years), our son, and our younger daughter who had just moved to New York and has a meagre two weeks of vacation a year.  They all went along with this latest folly, with good humour if varying degrees of enthusiasm and my daughter even said she would take some basic sailing lessons to prepare.

The spring was, for me, all about sailing and the sea.  Courses in sailing down on the Solent and Isle of Wight, but also VHF radio operation, marine diesel maintenance, safety at sea, and of course navigation, using the charts and compass and log to calculate where you are in case the GPS breaks down.  A special course in boat-handling to cope with parking a large-ish boat in the crowded harbours of the Mediterranean.  Reading books about sail trim, the collision avoidance rules, signals by flag and fog-horn and patterns of lights that help you tell a trawler from a minesweeper at night (well, if it mattered at all it might matter a lot). How to signal a Mayday on the radio or using flares and rockets and bombs of orange smoke.  A whole new world, with intensive spoken Greek to top it off.

Just before leaving for Greece in mid-June, my oncologist reminded me of It, putting me through a battery of scans to see if the treatment was working.  This is mainly a cocktail of different hormones the side-effects of which would have been serious in a younger man, resulting in what they call “chemical castration”.  A horrid word but in my case, the end of an already diminished sex life (by age or disease, who knows?), redistribution of fat (to the tummy) and, for a time, hot flashes and teary episodes, not tragic if, in the words of George Burns, you consider the alternative. If you have lived as a man, enthusiastically so, for 62 years, why not try a few years as a menopausal woman?

The initial scan results looked good, so we set off for Greece via France in especially good spirits.  But then my usually uncommunicative doctor actually called me, catching me as the old station wagon left the Paris Boulevard Périphérique and nearly causing me to drive off an overpass, which would have been ironic.  For the news was that the cancer had regressed, completely, from the bones and lymph nodes and now only resided where it began, in the centre of the prostate gland.  This was probably treatable and they would design a course of radiotherapy later in the summer. A “prognosis-changer”, as he put it, with the former two-year deadline rising at least to five and possibly beyond, and the new treatment would be with “curative intent” rather than just palliative.  I am sure that sailing around the Greek islands, after all that preparation, the pristine natural beauty, the charm of tiny, unspoiled fishing villages, the weather, the food and wine, the fun of boats, the friendly island people, all that, would have been wonderful, literally the fulfilment of a dream, in any case.  As it was, it was as close to Paradise as I can imagine.

Back home in London, life resumed its course.  I knew that there are no miracles and that the fight is far from over, but was able to get back to something close to life pre-diagnosis, only a little fatter and more interested in talking frogs than willing princesses, as the story goes (hopefully anyone who has not heard that joke can figure it out from the punch-line, or leave a message on this webpage).

Now I must confess to having had the best possible ally.  I will not gush about how supportive my wife was, and is: it was as though she had been born for this role and until that moment had suppressed a huge talent for making one feel that things are brighter than they say, that anyway one is not alone, that one is living with a wellspring of love and unconditional solidarity.  Making every day a joyful one, with no laments or tears to waste a minute of the time remaining, presumably diminished from what it “ought” to have been.  Humouring my whims and moods and wishes, she who had put up with a lot over the years and was not one to mince words when pushed too hard. A moratorium on nagging; not that she was a great nagger, but, well, occasionally it would seem a bit like it when I was sluggish or obstinate or neglectful of things important to her.

And then that fateful Sunday.  Suddenly, the dust and cobwebs and junk in our garage, a former animal stable with feeding troughs and general mess dating from before the French Revolution, all of which I have happily ignored for years despite her pleas for me to give it a clean-up, got the better of her.  And then I knew that for her, I am not sick anymore.  And that it is better to be healthy (even with an occasional nag) than sick (this really is more profound than it sounds).

Now, three and a half years later, the prognosis is looking even better.  I went through seven weeks of radiotherapy to the prostate, previously colonized lymph nodes and pelvis, without any of the horrendous side-effects I had been warned of.  For the doctors were of two schools of thought: the traditionalists who thought that “T4 (metastatic) prostate cancer cannot be treated locally”, that is through surgery or radiation, the game (doubtful improvement) not being worth the candle (possibly wearing a bag for the rest of one’s life); and those who thought that given the cancer’s spectacular regression, it might be worth a try, however statistically hopeless the possibility of cure might seem.  I wish everyone could have as painless an experience of intensive radiotherapy as I did.

I have now been taken off hormones, a period called “watchful waiting”.  I have regained some of my old self-centered male prerogatives and reactions, lost belly fat and re-grown hair here and there.  My oncologist is a firm believer in diet and supplements to combat cancer, so I take Vitamin D and green tea extract daily.

Along with the sailing, of course.  For I am convinced that psychology is every bit as important as treatment.  And the part of prostate cancer that resides in the head, whatever stress or worry that might have contributed to the appearance or aggressive nature of It, continues to be battered into remission (at least) on the pristine blue waters of the Ionian islands.  Incredibly, my terrestrial wife herself came up with the idea of actually buying a boat, to be left with a charter company in Greece but available to us for two annual spells of three weeks each.  Six weeks sailing a year, meaning that I am constantly either on our lovely Moira or dreaming about the next time.  “Moira”, by the way, is an ancient Greek word meaning “allotted portion or fate”, and she is just big enough for us to be able to invite a friend or two to share her with us.

When my wife—who is becoming more of a sailor every time—is aboard, we putter from island to island, legendary places like Ithaka and Kephalonia.  One major focus is trying to find the places behind the events in the Odyssey according to now one, now another of the competing theories.  By day we sail if there is wind, dropping anchor in an empty cove (or, just for fun, at Skorpios, just off Jackie’s beach hut, a tiny, wistful box in white trimmed with blue, ever forlorn and empty). Night finds us in tiny harbours like Kioni, where we nestle in among the colourful fishing boats.  I am constantly amazed at how little things have changed since Lawrence Durrell wrote his travelogue The Greek Islands, there is so little concrete or other signs of the aggressive development that has turned so much of the gorgeous Spanish coast into a garish travesty of what it once was.

When it is just me and a male friend or two, we are slightly more adventurous.  My son came again, and his passion for history had us seek out the Nekromanteion (“Oracle of the Dead”), a weird and still not-fully-understood complex of buildings up the coast on the River Acheron (still called that, pronounced “Acherondas”).  This is just where Homer said Odysseus went to find the entrance to Hades, in his quest to find out when and whether he would ever make it home to Ithaka and the (he hoped) faithful, patient Penelope.  There he poured out libations of blood to attract the shades of, among others, his mother (“Sorry I was not home when you died, Mom!”), Achilles (“I had rather be a slave on earth than a shade in this gloomy place”), and the blind seer Teireisias (“you’re not out of the woods yet”).   You go past ancient walls and strange gateways and pilasters, finally climbing down a steep iron staircase to a subterranean chamber with niches in the walls. There are actually channels in the floor of this deepest part of the site (which includes “Cyclopean” stonework dating to the time of Homer if not of the Trojan War). The imagination runs riot.

***

One lasting side-effect is of course that I understand a lot more about being on the receiving end of an advanced cancer diagnosis.  I used to shy away from friends who suddenly found they have It in one form or another, thinking surely they don’t want to talk about it, what can a healthy person say to make “them” feel better, and generally not knowing what attitude to take.  I thus avoided an awkward subject in good Anglo-Saxon fashion.  Now, I seek out friends or acquaintances who have had such news, to let them know that they are not alone, modern lepers whose disease is not thought contagious, but whose anguish or despair might be.  For me they are brothers and sisters as all people ought to be at all times, “in an ideal world” as they say.  Without waiting for that, I welcome them to this exclusive club—exclusive, because it rejects all those smugs still living with the illusion that they are and always will be healthy.  We members have been served with tangible reminders of our mortality, and this gives us something very precious: the realization that every day, every minute must be made to count, to provide the maximum texture of having been lived well.  Must one be sick to attain this realization?

Hormones, moral support or attitude, dumb luck or a freak of nature, I will never know what exactly caused this sea-change in the nature of It.  Having just celebrated my 66th birthday (I was supposed to have bowed out well before now), I have the feeling that even if It were to reappear tomorrow, as it of course could, I have had a good measure of revenge.

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18 thoughts on “PC (as in Prostate Cancer)”

  1. Update August 2011. all systems go, all tests clear, no symptoms of anything except normal ones for age 64. All thoughts on 4 weeks sailing in the blessed Ionian Sea coming up from mid-September. Birth of grand-daughter Olivia great event of the decade at least, especially as she is such a fount of joy and laughter. May life smile upon her as she smiles upon life!

    • Update January 2015 (!!). The last three years have gone by SO fast… I remember thinking 5 years ago, “Why only 2 years? Ah, if I only had FIVE instead…” Well I have already had those five, two as promised and three bonus. And realise how strong an instinct survival is; or greed, if you will. Hoping to sign on to another sailboat program in the Ionian, another… five years. Who nows? one signal: my oncologist said, last October, “Come back to see me… in a year from now.” Fingers crossed; sails set for a close reach to wherever. I wish everyone with a scary diagnosis could have as positive a result five years on and counting.

  2. Update August 2012. Still in remission, living life to the fullest, sometimes these things are a useful wake-up call not to waste time on futile things.

    No further updates unless things change (no time! must get ready to sail again!)

  3. Update: yesterday my oncologist said they are beginning to think I may be cured of cancer, not just in remission. Time will tell. Initial elation replaced by realization it means, if confirmed, that one is free to die of something else, like most people in the world.

  4. Tomorrow, off to Greece and 3 weeks sailing the Ionian on lovely Moira. Weather forecast is for “beau fixe”, unbridled sunshine. Everyone feels sorry for the Greeks: but all the bankers in the world cannot take away their beautiful landscape, pristine sea and islands, glorious climate, and warm and funny people. Maybe this visit my Greek will be up to catching some of the jokes. Oh, did I forget to mention It? well so I did…

  5. It was cooler than usual for this time of year, during our 3 weeks the sea warmed from 20 to 23 degrees C… from good to wonderful, and those who moan that “there are no more fish in the Med” should snorkel at Ambelaki Bay on Meganisi Island, the Island of the Cattle of the Sun-God in the Odyssey, Tim Severin and I believe.

  6. update 13 December 2013. No hormones since February, numbers still good, scans free of active cancer, PSA (if you must know) still almost undetectable. seems like a bad dream, hopefully not a recurrent one!

  7. October 2015: now SIX years since The Diagnosis. blood-work numbers are still good. Signed sailboat Moira up for a sixth year, making plans for when she retires from chartering, like an old horse released from the chore of plowing, now she can just be for our delight. No thought of “for how long?”, or not much, anyway. So grateful. But I have learned so much from All This, or “It”; sometimes I wonder whether, if offered the chance to go back and have a benign diagnosis, would I? Give up the lessons of manifest mortality which I think have made such a difference in my attitude to life; maybe in what it is like to live around me, formerly focussed on trivial things. No great philosopher or saint now, that’s for sure; but probably a bit more reflective, perhaps a little less self-centred. Who’s to say what might have been; knowing what is is tough enough!

  8. Big battery of tests coming up, including something called a PSMA Scan. My health insurance (BUPA) would not touch it, but the NHS agreed (bless ’em), counter-intuitive a s that may seem. The old PSA has been creeping up which was to be predicted, anyway the wise Dr (now Prof) Payne wants to find out why. More news mid-January.

  9. Tests found 3 new sites of active cancer on the pelvis, and right away they zapped them with a powerful, focussed radiation-beaming gun called CyberKnife. Time will tell whether they got it all, but I flew the day after the last treatment to Greece, and now a day later am waking up to a glorious Greek dawn on Moira, snugly berthed for the night in the tiny harbor of Vathy, island of Meganisi, which some think is the Island of the Sun God’s Cattle in the Odyssey. I’ll buy that.

  10. Zapping seems to have worked: PSA dropped, which shows (1) there was something worth zapping, and (2) they hit the target. lots of new scans week of 5th September. Fingers crossed!

  11. Bernadette said:

    and how did scans go?

    • Very kind of you to ask: “limited areas of isotope uptake” still on the target areas, possibly a vestige of the previous (zapped) recurrences. Doctor says not to worry, new scans in the New Year; went off for 4 weeks sailing on Moira. Cyberknife and Moira seem to work together!

  12. Your Survivor Story in “Patient Resource for Advanced Prostate Cancer” grabbed my attention as I waited in urologist’s office for PSA blood draw one year after my PC treatment. The success of your treatment is encouraging after an initial dire diagnosis. My diagnosis at age 62 was not as somber – Gleason 6 confined to prostrate but multiple tumors. After researching the clinical studies, I opted for the newly approved (at least in US) HIFU treatment. My PSA has since bounced around a bit but seems to be (fingers crossed) settling in around 0.60, which was nadir 3 months after treatment.

    And like you, my PC diagnosis has helped me focus on how I wish to spend my time. I too love sailing (owned a sailboat in mid-80’s) and realized that sailing is the most peaceful, enjoyable recreation I’ve ever experienced. I stayed fit by spending many hours cycling in last several years (still have questions whether the pressure/inflammation from biking contributed to PC) but am now focused on how to best spend my time to enjoy sailing. Living in the flyover country, I’m limited to lake sailing but am actively trying to relocate closer to blue water. It’s complicated because I’m still working fulltime as an attorney and have high school and college age children to support for a few more years. But with a little luck and grace, I hope to be sailing into retirement, both literally and figuratively, within the next year. Here’s wishing you fair winds and clear scans for years to come!

    • Greetings David,

      thank you for your thoughtful comment. I would say you are on a very good track from the numbers, though I don’t know what HiFU is. Besides sailing I do a LOT of biking (well, compared to the occasional ride in former years) and believe in it almost as much as sailing.

      No-one has any secrets anymore, a way of saying I looked you up, and you seem to have a distinguished legal career which I am sure would be in need even near the sea.. just saying.

      Anyway, all the best, and thanks for sharing. Would you mind sharing any significant updates including “no news” because that, in this case, is most definitely good news.

      Ted

  13. Yes, I am familiar with Mark Emberton from reading clinical studies on HIFU, which has been performed in Europe much longer than in US. My PSA 3 months after HIFU was 0.59 but bounced as high as 1.48. Good news is in Jan and Feb. 2017 it’s back down to 0.60 and 0.48 (a new low), respectively. With HIFU, you don’t get 0.0 because you still have prostatic sac. On a PC support forum, I’ve written in more detail about my experience if you’d like to read more. https://www.cancerforums.net/threads/46286-Sticky-What-I-Need-to-Know-about-HIFU.

    I’ve followed HIFU closely and some urologists are still not keen on its efficacy for whole gland treatment but see it as good option for focal treatment where there are small, discrete tumors in one area. The concept is to preserve function of remaining good prostate tissue. The author John Grisham even wrote a free short book “The Tumor” on the potential for HIFU to treat brain cancer. You can find it on Amazon.

    There was one largely debunked study linking frequent bike rides to a higher incidence of PC. We know bike riding, like sex, should be avoided at least 72 hours before a PSA test, at least in guys who still have a functioning prostate. I’ve wondered if my riding (including some metric century rides) could have contributed to the onset.

    And after HIFU the odd thing is that my spikes in PSA came when I had been doing some bike riding a few days before the blood draw. .HIFU ablates or cooks the tissue, which can be discharged in urine for up to one year afterward. If that residual tissue has any PSA, the pressure from cycling might distribute it through the blood. For the past 3 months I’ve refrained from cycling and PSA headed in right direction – down! I do plan to get back on the bike. If it spikes again, I will firmly believe it’s a false positive from the cycling.

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