My PC Adventure – a Kiwi male’s brush with prostate cancer
Why I’m writing this – CLICK HERE>
- 1994: First notice minor reduction in urine flow.
- 1997: Aged 50 – GP does first digital examination.
- 1998: Begin PSA tests (negligible levels).
- 1997: Aged 60 – GP, as usual, finds nothing with digital exam, and PSA is negligible.
- November 28, 2008: GP discovers something suspicious from digital examination. Referred to urologist.
- December 9, 2008: Urologist repeats digital examination and confirms something needs investigation.
- December 11, 2008: Urologist conducts 12-sample biopsy.
- December 24, 2008: GP advises three of the 12 samples were cancer-positive, but it’s low grade.
- January 6, 2009: Urologist provides thorough briefing and outlines treatment options, provides information (books, video).
- February 2: We confirm radical prostatectomy as the option.
- February 25: Public hospital advises operation booked for March 25, and pre-op assessment for March 9.
- March 9: Pre-op assessment postponed because of family tragedy.
- March 17: Pre-op assessment.
- March 24: Hospital confirms operation will proceed tomorrow.
- March 25: Operation carried out.
- March 27: Go home.
- March 30: Blood clears from urine. First spontaneous nocturnal erection.
- April 1: Catheter removed. Incontinence practically nil. Launch of Prostablog.
- April 3: Erectile function “experiment” backfires – visit to A & E at hospital. Return home after two hours.
- April 4: Surgeon rings with the good news that the tumour was well-contained and low-grade in terms of aggression. Clot clears from urethra, but blood continues in urine.
- April 5: First walk down the street.
- April 11: Blood clears from urine. First Heineken.
- April 18: Scar fully healed.
- April 23: Visit to erectile function rehab clinic.
- April 24: First social outing – drinks with former students at the pub (one Heineken only).
- May 2: First serious walk up Mt Victoria (get halfway).
- May 13: Walk to the top of Mt Vic.
- May 25: Back to work…
- June 5: Catching the bus.
- August 11: Followup PSA test shows level is undetectable.
- August 25: Followup visit to urologist: “You’ve got the trifecta!”
- February, 2010: Second followup PSA test – still undetectable.
- April, 2010: Life a year on.
- May 21, 2010: Third PSA test since surgery shows undetectable level (<0.05)
- December, 2010: Fourth PSA test – still undetectable.
- June, 2013: All still good…
PART 1: Piss proud and piss weak
NZ TV current affairs host Paul Holmes said it on his show during one of his monologues: “Got trouble with the wee-wees – get it checked out.”
It was the 1990s, I seem to recall, and he was taking us through his experience of prostate cancer: discovery, treatment, aftermath, and advice on how up-tight Kiwi blokes should have regular medical checkups to catch the devil early.
He said it all in a dramatic sweat, the perspiration running off him under bright lights and the effects of whatever treatment he was getting at the time.
It resonated, but only slightly, in that “yeah-better-get-checked-but-not-because-I’m-a-hypochondriac” way men have.
I’d had a gradual slowing of piddle flow from about 1994, and eventually mentioned it when I was talking to my GP on Waiheke Island where we lived at the time. I asked the doctor – an old school colleague called Barnett Bond – whether I needed a blood test (I’d heard about it, vaguely) and his response surprised me: “I’m not giving you the test.”
In his opinion, the PSA test was as yet inexact: it could pick up five different enzymes (I think that was the term he used), only one of which was a cancer indicator. A positive test had a good chance of being a false alarm, needlessly putting the patient through further testing that was not very pleasant.
Meantime, he said, a digital exploration would do. My first, it revealed nothing untoward.
Ah, I hear you say: the old “finger-up-the-arse”, the dread of every red-blooded Kiwi male, a wellspring of homophobic fear and tasteless “jokes” along the lines of “I’m bloody glad I’m not gay”, etc.
Actually, it’s no big deal. The doc gets you to lie on your side, underpants down and knees drawn up. He puts on a rubber glove (in my experience, without any snapping sounds) and before you can blink inserts a finger (I’ve never seen which one) deftly up the back passage and has a quick feel of the prostate gland, a walnut-sized organ attached to the bottom of the bladder, and through which the urethra (the tube taking piss from the bladder) passes on its way to the penis.
The prostate can be easily felt up through the wall of the colon. My only advice is, have a leak before the examination, because prodding against a full bladder is uncomfortable.
By 1998, I’d moved to New Plymouth, where my new GP, Hiran Fernando (who later ended up in jail for offences against some of his female patients), did both the digital exam and a PSA blood test, about which he had no qualms. Both showed a benign result, so at the age of 56, I seemed in good shape to avoid the prostate cancer discovered in my father at the age of 83.
Or so I thought. I now know that most men develop it or at least an enlarged prostate as they head into old age (I’ll put that at 80), and the chances you’ll get it if your father did are probably enhanced.
Meantime, what was causing the gradual loss of flow? Why was it becoming something of a joke to stand in a public urinal taking several minutes to leak a weak stream, while two or more young men could come in, let fly with what sounded to my increasingly sensitive ear like a horse slash and leave well before I was finished?
Odd thing is, I didn’t ask my New Plymouth GP. I was happy with the negative test results for prostate cancer, so thought it was just age creeping up gradually. Turned out, I was right, but more on that later.
There was another reason not to push it. In my adolescent years and up until I was about 30, I suffered a “condition” sensitively dubbed by a mate I confided in as being “piss proud”. Basically, I couldn’t go in public. Even one other bloke standing at another urinal at the far end of a line of 20 was enough to stop anything happening.
This led to some fairly stressful experiences, the most memorable at the age of about 12 when trying to go during halftime at a Ranfurly Shield match at New Plymouth’s Rugby Park. Finding myself at the head of a 1000-man queue for what seemed like the sole male lavatory and being told in no uncertain terms it was “three-at-a-time”, I froze.
Full bladder notwithstanding, all I could do was aim a maddenly dry dick – shrunk by fright to the size of a peanut – at the filthy white bowl for what seemed like hours, ever mindful of a howl of impatience and derision rising behind me. My comrades in micturition changed constantly, until, at a point when two new ones stepped up at the same time, I feigned shaking the drops off and stepped away. The capacity of a full bladder to stay that way for a long time was cruelly demonstrated that day.
Eventually, I found a way to overcome the problem – by counting the tiles in the loo. I would start at the roof of the wall before me and count the tiles (or screws, or individual letters in the graffiti, whatever) and freeze my mind with distraction until a tentative piddle began. By 30, this ridiculous affliction simply vanished and now I can piss it out with the best of them.
Except, of course, I was past my wall-conquering best. That hydrant flow of the 18-year-old had matured into a respectable stream that was able to be directed clear of the shoes, but which never again approached the cataract qualities of the stallion. Not that I gave a bugger, given that just to be able to piss on demand was triumph enough.
Then, in the late-40s, the arcing stream, though still intact as a single body of water, began ever-so-slowly to weaken. I put it down to nothing more than the psychological aftermath of my youthful brush with piss pride and apart from my half-hearted alert to Barnett (his response escapes me now) said nothing during annual medical checkups, which I’d started getting after an accidental discovery of raised cholesterol in 1991 (that’s a whole different story).
So, that’s the rundown on some of my internal plumbing, the bits relevant to this tale. Read my next blog to see where it all began to add up.
PART 2: Never trust the PSA (not the Public Service Association)
WHEN I was a kid, vague family discussion sometimes turned to the “waterworks” problems of one or other of my numerous uncles.
I realise now they were probably not talking about council water connections, but there was never enough solid detail to pin anything down: it was made clear this was not a topic for young ears.
Judging by the muted amusement, the stories were slightly comical to those with the code: “…and when Jack asked the bus driver to stop so he could go, there was no arguing about it. When Jack has to go, he has to go. So they stopped right there in the middle of the Mahoenui Hills…” But incomprehensible to those without it.
Despite what sounded to the untrained ear like a plethora of mysterious difficulties with his plumbing, Uncle Jack eventually died of pneumonia, and to my knowledge, prostate cancer was never linked to his death or to those of any other senior male family member (other than my father, Jack Tucker, who “had my balls replaced by marbles”, as he delicately put it, at age 83).
I have no recollection of when I first heard of prostate cancer, which is hardly surprising, given that unless you’re the one being told you’ve got it, it’s not a death-of-Princess-Di-or-Jack-Kennedy moment when it’s first mentioned.
Probably, it cropped up when I was doing the medical round on the Auckland Star in the late 70s, when I imported various lofty medical publications to read for story ideas, usually understanding no more than a fifth of what I perused, and going home with a new complaint every day. Not that one of those was likely to have been PC, given I was thirty-something and had plenty of hypochondriac possibilities to embrace other than those associated with old age.
However, as you ease into your 50s, you become aware of what I heard someone call “the corridor”, an alarming pre-late-middle-age state in which mortality presents its first real challenges. Former school mates (still “just boys”) die suddenly of heart attacks. Others have bypass operations. Lung cancer, bowel cancer and diabetes become possibilities, because we’ve all just heard the news about (insert name).
No mention then, though, of the old prostate. No, that was still coming…and has duly arrived over the last decade as we baby boomers head for a different kind of 60s than the liberating ones we claim not to remember, a decade that is very much likely to be implanted on the memory cells and involve quite different reasons for embracing morphia.
It currently seems like a tsunami of bad tidings. In the last few years I’ve become aware of dozens of friends, acquaintances and work colleagues who’ve had the PC diagnosis, many of them more or less my age (I’m 62). The latest was former Auckland Star colleague Phil Gifford, who wrote about his PC news in last weekend’s Sunday Star-Times (something that partly motivated me to write this blog, to do my bit).
My PC news came on Christmas Eve, 2008. That was no fault of my wonderful GP, Rob McIlroy, who said – after I pestered him for the result of my tests – that he didn’t want to ruin my Christmas with news that could have waited.
Which was a clue that my diagnosis was not as bad as it might have been: I had a non-aggressive form of the disease, only just showing, and there would be plenty of time to consider treatment.
Let’s step back a bit. Rob acquired me as a patient after we moved to Wellington in 2005. He is a well known and respected Hataitai GP, who is sometimes growled at by us patients because he always seems to be at the surgery working ridiculously long hours to look after us.
After being accepted on his books that year, I got into an annual pattern of checkups. Rob would record weight, blood pressure and general wellbeing, as well as taking out a bit of the red stuff for tests on diabetes signs, cholesterol…and the old PSA (which, incidentally, stands for prostate-specific antigen.
My PSA barely registered. We didn’t bother with a digi-test, since I’d had one the year before in New Plymouth, and Rob had no other cause to act: so far I’d neglected to mention my gradually slowing urine stream, just assuming my prostate was enlarging naturally with age and pressing slightly on the urethra.
During the 2006 check, however, I did bring it up, and without hesitation Rob had me positioned for a digital examination. “That’s benign,” he pronounced.
I didn’t ask for another one the following year (2007), what with the PSA practically nil still, but in November, 2008 (a couple of months behind schedule for the annual because I’d been busy at work), I mentioned the slow pee stream again, so we agreed another digital was in order.
This time, the probing lasted a bit longer than usual. Rob ummed for a moment, then said he’d like a second feel. “Hmm, just feels a bit rough on the surface on the right. May be nothing, but let’s get you along to a urologist. Better to be sure.”
Prior to my first appointment with Wellington urology surgeon Rodney Studd, the latest PSA result came back: .77, about as low as you go. But Rod’s digital exam quickly confirmed that Rob had indeed discovered something (later described by one of them as like “feeling a bit of gravel in a soft apricot”). I would now need a biopsy, involving taking samples from the prostate and analysing them.
Right. Paul Holmes sprang to mind again. Wasn’t this the procedure he described in a newspaper column as “like being punched up the backside”. Terrific. I was terrified by the time the day for the biopsy arrived. Thanks Holmesy.
All I can say is, my experience was different, something which now seems quite common with nearly every aspect of the PC path. No two people tell of the same pain, results, feelings, outcomes, etc, as you proceed through what is a complex and individual journey.
Again, I was lying on my side with pants down and knees drawn high as Rod conducted the biopsy procedure. He explained that the probe he would introduce to my back passage (I’d had a self-administered enema before going to his rooms) would firstly give a local anaesthetic, so the biopsy needle going through the wall of my bowel would not cause any pain.
It didn’t, and we chatted away, analysing the merits or otherwise of the Dominion Post while he took 12 samples from various parts of the prostate.
To me, each felt like a barely noticeable, dull thud (not the “punch” described by Paul). It was all over in what seemed like 10 minutes, when – inexplicably – I felt faint and slumped a bit, showing what the nurse and my wife later said was a very pale face. Some sort of delayed shock reaction, I guess, or maybe just relief that nobody, especially me, died.
Rod gave me his cell number and told me to ring if any infection showed up. As he said, the puncture was through the wall of the bowel, so there was a small chance of infection, which would likely happen about three days afterwards and show up as a fever. If that happened, I was to get to A and E and give him a call. Nothing happened and I was back at work the next day, albeit walking about gingerly.
That didn’t stop me worrying, of course. There are side effects, carefully explained beforehand by Rod but nontheless disquieting. My pee was rose for a day, but quickly turned to a healthy-looking sauv blanc. Having the first crap was daunting, knowing your bowel had a wound of some kind in it; but by chance I’d been on a liquorice bender that week, so the usual straining wasn’t needed, and there was no sign of blood.
Then my good and helpful mate Lance – who’s had a couple of these procedures because of his high PSA count – laughingly warned: “Wait till you come!” He was referring to the pre-procedure advice there would be blood in my semen. Sure enough, the usual creamy grey was sort of dirty-looking, brownish rather than red, but certainly not standard colour. Again, as warned, this lasted a week or two, then cleared. As the doc said, usage “clears the pipes”.
Two weeks later, the standard wait for results, we were approaching Christmas and I was getting anxious to know my fate. My call to GP Rob revealed the following:
• Three of the 12 samples showed indication of cancer.
• The level of aggression seemed to be low.
• The prognosis was good.
So. In a reverse kind of way, the Waiheke GP had been right, sort of. My low PSA, which had given me a certain piece of mind, turned out to be completely wrong. How come? I would need to wait a couple of weeks for my appointment with Rod to find out, as Christmas festivities intervened.
Next: What goes through your mind when told you’ve got cancer – and who do you tell?
PART 3: ‘You’ve got cancer.’ Okay then…
YOU like to think everything is under control when you’re first under the threat of cancer.
Outwardly, during Christmas with family, and New Year camping at a friends’ vineyard in the Awatere Valley in Marlborough, I was the prince of calm as we told a few people.
But my subconscious betrayed me. When I got to Blenheim Airport to fly over to Wellington for my appointment with the surgeon to get his briefing on the biopsy result, I found I’d booked the flights back to front.
I obviously didn’t know whether I was coming or going, and it was only the kindly efforts of Air NZ staff that got me to the surgery on time. Flustered, worried, off balance.
It didn’t matter. Rod Studd is one of those kind, gentle, warm practitioners, who took his time to acquaint me with what I faced. He calmed me, and we ran through the significance of what he’d found and treatment options.
With this being the first specialist session after prostate cancer was confirmed, I already knew I had cancer in some measure or other. Now I ask myself: what exactly goes through your mind when you’re first diagnosed?
There is no simple answer in my case, because the news formed itself in stages, so when it finally came, it was no surprise, and I was already leaping ahead to the prospects of cure.
My first inkling came when the GP’s digital exam showed “there might be something”. A little heart jiggle, a pause to think, before returning to a busy day. Ah well, maybe it’s nothing.
A two-week wait, then the surgeon’s examination: Yep. There is something there. We’ll need to test. It might be nothing, just to be sure…
Oh shit. Still, the test could be negative.
Another wait of a week or so, then the biopsy. Followed by limping back to work, and just staying busy.
Who do I tell about this? Lin knows, of course, but who else?
Nobody. Absolutely nobody. It could be a false alarm: imagine what might happen to enrolments on the next journalism course if word get outs. “No point going there – the tutor’s gonna die.”
But I’ve always found it hard to keep my mouth shut. So, while getting a coffee at Plum cafe below the J school in Wellington’s Cuba St, I come across a couple of mature (40-ish) women acquaintances, both of whom I respect hugely.
I sit down for a chat, ask one about some relationship difficulties we all know she’s going through; then blurt it out: I’m having tests for prostate cancer. They react sympathetically, of course. I say, don’t tell anyone, please. They promise…and it’s a promise they keep.
I confide in Lin that I’ve let someone else in on the “secret”, but we agree that it’s best to wait for the biopsy result before it goes further.
The estimated due day comes and goes just prior to Christmas and there is no phone call, so I ring the GP’s surgery and speak to the receptionist. Ah yes, your results are through, but I don’t know how to interpret them, so I’ll get him to call.
But no call. A day later, Christmas Eve, with Lin’s lovely niece arrived from Canada to spend Xmas with us, I down a Heineken and call again.
Dr Rob is apologetic. His and the surgeon’s homes back on to one another and they’ve had a chat about me over the back fence, and decided not to let me know until after the holiday because they don’t want to spoil it. The news, he says, is not urgent.
Anally-retentive me, of course, just wants to know, and now I’ve persisted, naturally he broadly explains what they’ve found. It may or may not be significant that I can recall nearly every word we exchanged, a sign, obviously, that having cancer confirmed has a certain indelible effect on the mind.
Yes, there are signs of cancer. Three of the 12 samples showed something. But we’ve got it very early, and you’re got plenty of treatment options to consider. There’s no hurry.
What are the options?
Have you heard of brachytherapy?
Um, that’s the nuclear seeding thing, isn’t it? (Naturally, I’d already been on Google, and I was aware of an older family friend who’d had it, successfully).
We discuss costs (about $30,000), and the fact Lin and I let our medical insurance lapse a couple of years ago. What else is there?
Radiotherapy is probably not an option because it’s not accurate enough when dealing with such a complicated area of the body.
So why don’t I just have the bloody thing out?
Hmm, there is a morbidity rate to consider. It’s a complex operation.
But this was all a bit premature, says Dr Rob. I need to hear the full story from Rod Studd, the urologist, and an appointment for that will be arranged as soon as possible after the break (January 3).
So. Here we are, Mr Studd and me, three days into 2009, going through the details of this sneaky disease they have detected in me.
I have a lot in my favour. We’ve found out early, it’s not aggressive, was found in only 25% of the sample, and chances are it has not yet spread.
If I was 75 they would probably just ignore it, since the Gleason score for my samples indicates low aggression, 6/10. However, as a ”relatively young, fit” man, I have a good chance of quality life, provided all goes to plan, so something needs to be done.
What’s he recommend? Well, that’s not how it works, exactly: he will advise me of the viable options and I need to spend some time thinking it through with my wife before letting him know what I’d prefer.
Why the caution? I’m not sure exactly, but my own reading on PC suggests this is a bit like some other current medical debates (for example, cholesterol), and there is controversy about how far to proceed with treatment after reading biopsy results, or even whether the biopsy should be done. Some of the literature says there is a risk of needless treatment in cases of non-aggressive versions.
I tell Rod I’ve pretty much settled on removal (radical prostatectomy) because while Brachytherapy has the advantage of leaving the prostate in place to continue its function, for me, being able to reproduce is no longer an issue, it costs about $30,000 (and we have no medical insurance), and not every patient is suitable.
Those with reduced urine flow, for instance, have to be treated with drugs to reduce the size of the prostate, since the therapy (which involves inserting tiny radioactive nuclear seeds in the gland to kill the cancer) causes some prostate enlargement. Urine flow may be affected.
Which reminds me: Rod also advises that my prostate is not noticeably enlarged. So, I ask: what’s with the weak urine flow? He says there will have been a small amount of enlargement, and that may be all it takes.
Despite my supposed early commitment to getting rid of the thing, he sends me away for a few weeks’ thought. I go with the additional information that he could do the operation either at his clinic ($15,000) or at Wellington public hospital. The waiting list on the public system is not very long.
He gives me some homework – a DVD and a couple of publications, one a pamphlet on Brachytherapy, the other an excellent British Medical Association book by professor David Kirk, Glasgow: Understanding Prostate Disorders.
By coincidence, I’m reading Michael Wolff’s new book on Rupert Murdoch, The Main Who Owns The News, and come across a passage describing the media mogul’s diagnosis with prostate cancer. It’s everywhere.
Next: The decision.
PART 4: Lose it and live – surely a no-brainer
IN A book I read recently, the author mentioned one of the things that put him off teaching – the sight of his maths teacher with a wet patch around the groin of his trousers as he stood in front of the class.
It haunted me in the weeks we had to make a decision about which prostate cancer treatment I’d go for, because if I chose removal (radical prostatectomy) there was a chance of incontinence, peeing when I didn’t want to.
The thought of that happening in front of a bunch of journalism students as I tried to hold their attention was not exactly confidence-building.
Another factor was possible loss of, erm, erectile function (such an innocent-sounding little euphemism, that).
I’d had the usual healthy afflictions of priapism during adolescent years (long bus trips, cinema fumblings, straying beyond the interview pages of Playboy, blah, blah) and into middle age couldn’t imagine anything less likely than the need for Viagra, despite someone on the internet being convinced otherwise.
Would losing it be such a big deal? Well, yes, but you have to put such a dilemma in perspective, even if your reasoning is not entirely rational as you’re thinking about it. My thoughts went along the simplistic lines of: Keep the hard-on and die, or lose it and live. No brainer, surely.
Of course, it’s not as simple as that. Going for removal does not automatically rule out future function, although it’s certainly a possibility.
Actual chances are argued about, but if function going into the procedure is okay, the op goes according to plan and crucial nerves associated with erection are not damaged, then the chances of someone my age getting back the ability (although not necessarily quite the same quality) are excellent.
As in all such matters, there are no guarantees. But there are certainly ways to reduce the chances of a poor outcome, including attending clinics afterwards where there are procedures involving injections, Viagra-type drugs and other things I don’t really know about yet (we’ll come to it later).
So that was reassuring. I’d be firing blanks (if anything), and that just didn’t seem to be very important.
And the incontinence? How come that was a possibility? Well, it seems we have a couple of valves (sphincters) that control the draining of the bladder, one at the bladder entrance to the drainpipe (urethra) and another in the prostate gland, which is wrapped around the foot of the bladder (is part of it, really).
These two act as a couple of gatekeepers that decide what heads down the pipe at given times (depending on whether we’re peeing or ejaculating).
Removing the prostate obviously cuts the number of valves to one, the weaker one apparently, so ability to control urine flow is reduced.
However, that can be countered after the op by adding a helper – better-developed pelvic floor muscle that can be used to assist the shutting-off process. The muscle is open to some pumping up exercises (more on that later).
Information I had put the risk of serious incontinence at about 5%, perhaps even less for someone around 60 who is not overweight and who keeps fit. And, as Rod said, if any problem turned out to be permanent, he could operate again to fix it.
Up against this option was Brachytherapy, which, if I qualified, would be a less obviously invasive operation, leave the prostate intact…and cost us $30,000 (in the absence of medical insurance). Compare that with getting a radical prostatectomy on the public system (free) within a reasonable time scale, although Rod warned I would not be treated as an urgent case.
Rod doesn’t do Brachytherapy. I would need to go to a private clinic in Tauranga for that. I might or might not qualify, since a reasonably normal urine flow is a pre-requisite, and mine was getting pretty weak. Drugs might have been able to fix that, though.
But all that seemed immaterial to me: I wasn’t interested in the B option. Not because of the money (we have a mortgage-free home and, as Lin says, what value do you place on your life?), but because I somehow wanted this dealt with once and for all, finish and clear, and I couldn’t muster sufficient male ego to be worried about future reproductive powers (not that I’m saying this is why others choose it) when so much else seemed to be at stake.
So, when I met Rod again near the end of January, I said I wanted him to take out my prostate in an operation at Wellington hospital whenever my name came up on the waiting list. He agreed without demur, and said he had over the past weeks cleared about 20 from the list, so the wait would not be too long, even though my operation was not urgently needed.
One thing still puzzled me in all of this: if my PSA was so low, how come I had PC? Simple enough answer: the test doesn’t pick up every form of the cancer, and I had one that it missed.
All the more reason to be thankful for the early digital diagnosis by GP Rob McIlroy. Later, I dropped off a present to thank him for prolonging my life – a copy of Barack Obama’s first book (we often discussed books) – even though such a gesture was probably absurdly premature, as I think back over what was to follow.
NEXT: Psyching up for “a small op”.
PART 5: Thank heavens for a mailbox thief with a conscience
EITHER NZ Post now pre-opens our mail before they deliver (unlikely, surely) – or Wellington has a mailbox thief who suffered a moral epiphany.
These are the only obvious explanations for something very odd that happened with the letter from Wellington’s Capital and Coast District Health Board advising me of the date for my upcoming radical prostatectomy.
The envelope had already been sliced open when we found it in the box.
I can only put the best interpretation on this. Someone was checking out mailboxes for window envelopes, grabbed my letter, opened it, and had a crisis of conscience: “Jeez, this poor sucker has cancer and probably really needs this operation, so I better return his letter.” It’s an improbable story, but what else is there?
Anyway, the letter was full of helpful information about what would happen, how to prepare, what to expect, and when it might all happen. Although the word “might” wasn’t used, it is implied, because there are no guarantees anything will happen on schedule when you go public.
The thought of getting back some tangible value for taxes paid is outweighed when you absorb the letter and realise you’re a statistic about to be dealt with by a bureaucratic machine lacking human warmth.
The nub lies in an instruction to ring between 4pm and 5.30pm the day before your op to see if it’s a goer. How many stories have we read/seen about people gearing themselves for the big day, only to have it whisked away by bed shortages, staff strikes, surgeon unavailability, and so on?
But such thoughts were secondary to something else contained in that pre-loved envelope – the date of the op.
It was to be on Wednesday, March 25, which was a day before the graduation of my first journalism course at Whitireia. I would miss out celebrating with a wonderful bunch of students and colleagues after a particularly gruelling year getting through the first delivery of the new National Diploma in Journalism (Multimedia).
Could it be put off for a couple of days? If not, should I warn everyone I wouldn’t be there? Did it really matter, or was my ego running away a little? Could I struggle out of bed and make it along? Could we set up a video link?
The decision made itself in the end: don’t mess about with the public health system. Requesting a delay could mean missing out. In every other way, the date was perfect, because it gave me the couple of months between journalism programmes to recover.
I sent back the acceptance letter.
Now, who to tell?
The boss, of course. Lots of support and sympathy there.
And an unexpected phone call from a senior manager who wanted to reassure me he’d been through the same operation nine years before and had fully recovered. As he began, I thought of all the Job’s comforters who seem to emerge in these situations to regale you with their ghastly tales of mishap, but his story was carefully told and proved immensely comforting.
It was only after my op, when I was into recovery, he told me the full extent of his 12-hour ordeal on the operating table, because his surgeon had to fix a double hernia prior to the prostatectomy.
“You’ll have a catheter afterwards, of course,” he said. “We all come to love our catheter…”
Could he be serious? I’d never had one. The very thought of something being poked up a narrow and incredibly sensitive tube running up through equally sensitive territory was horrifying.
My father needed one inserted by his GP once after, in his late 70s, he drove from Auckland to New Plymouth without stopping for a pee, and then found he couldn’t go. I shuddered at the broad details.
Now I faced the certainty of suffering the same fate (hardly the same, of course, since mine would presumably be inserted while I was under anaesthetic)…and somehow I was going to love this tube and the associated bag strapped to my leg?
Which all goes to show how easy it is to miss irony when you’re hanging on the words of someone who is doing an otherwise excellent job of setting your mind at rest.
Anyway, who else needed to know about all this, aside from close family and friends? Work colleagues, of course. More sympathy and support, and some shock.
The students? I decided not at this stage. They were in the throes of completing final work and didn’t need any diversions. Besides, it might rain on their plans for the graduation celebrations, and all for nothing if the operation didn’t go ahead. I’d let them know on the eve of the op, if it got the go ahead.
Meantime, the date seemed a long way off, more than a month, and there was a busy time at work, as well as a family wedding coming up that would take our minds off things.
NEXT: Rocky leadup to the big day.
PART 6: Looking for pre-op distraction – but this is ridiculous
YOU’D think a big, fat family wedding would be perfectly distracting in the lead-up to a major operation.
Normally, you’d be right.
But the wedding of my niece Jaclyn to her Melbourne man, Ash, back in hometown New Plymouth just a couple of weeks out from the big day became a disaster that thrust the family briefly into national prominence.
The wedding itself at the idyllic Ahu Ahu Villas on the coast just south of the city was beautiful.
But within hours my other niece, Philly (right), the sister of the bride, lay dead after tumbling out of the mezzanine bedroom of her accommodation in the early hours of the morning and suffering an appalling head injury.
I was due back in Wellington the next day for a pre-op assessment, but all thought of that was abandoned as my brother (father of the bride) and I and our families struggled through media attention, funeral planning, the funeral, and more grief than you could ever imagine.
Any consideration of my own upcoming challenge simply seems selfish in the face of such emotional upheaval.
However, eventually I have to try to protect my place on the public waiting list, so some negotiating with Wellington Hospital gets the appointment changed to the following week, which will be just a week prior to the operation date.
When I explain the reason for the requested delay, they’re helpful, and assure me I won’t lose my date.
The extended stay in New Plymouth between March 6 and 11 has taken some precious teaching time from my students, who are working furiously to complete their last assignments (the course is due to end on March 20), so there is little chance to dwell on what’s coming up. I sleep well.
Pre-assessment is what it says: they check your fitness to have the operation.
After losing myself in a remote car-park somewhere a kilometre from where I was supposed to be (the signposting was temporary and confusing, given the new hospital building had only just been open a couple of days), I report to the new outpatients department.
It seems surprisingly cramped and inaccessible behind a vast atrium entrance (pictured, right), with pre-assessment hidden down a corridor. There are no signs up yet, but a string of smiling staff – no doubt thrilled to be in their new quarters – seems to know where I’m going and ushers me through.
I get to a counter behind which are three or four people who appear preoccupied. I put on my best, quizzical “I’m-not-invisible” look and finally someone notices.
She directs me to a small, internal, windowless, largely empty waiting room, where I watch an elderly couple in wheelchairs giving one another constant reassurance and occasionally being fussed over by solicitous staff.
A nurse (although it’s hard to tell: she might have some other, more elevated title) calls my name and takes me around a corner to weigh me and check my height.
She then leads me to a room where I remove my shirt and jeans and lie on a bed. “Ever had an ECG?” she asks. Nope. “These might pull a bit when I take them off,” as she places small, circular sticky pads all over me, attaching my life forces to a machine whose readout I can’t see. “Keep very still for me, please.”
Back to the waiting room. Wheelchair couple still await their escort to the carpark.
Next, a man comes in and calls my name. He’s an anaesthetist, but not necessarily the one who will be involved in my operation. “I’m just going to run through a few things with you.”
My ECG is “splendid”, he says with a smile. He’s English, but has lived here a while, and says he finds it such a pleasure to deal with so many fit and healthy people. I presume I’m one.
I’ve had 30 years of house renovation work to give me inherent, anaerobic fitness. I’m a few kilos overweight now because the power tools have been retired a couple of years, but lately on the way home from central Wellington to Hataitai, I’ve been getting out of the car at the bottom of Marjoribanks St at the foot of Mt Victoria and tramping up over the top. It’s a tough, 40-minute walk.
My blood pressure has edged up above 90 in recent times, so now I’m on a low dose of blood pressure medication. The cholesterol hovers just above whatever new goal-post the undecided medical researchers are dictating, but it draws nothing more than reminders about diet, which is kept cheese-free but not entirely devoid of rich Sunday lunch desserts.
He explains that I won’t be getting a full dose of general anaesthetic.
It will be complemented by a jab in the spine with a mixture of local anaesthetic and morphine painkiller, a procedure that reduces the general anaesthetic hangover and boosts pain relief and recovery.
My next interview is with an impossibly youthful Asian doctor, who says he will be assisting with the op. He takes me through a questionnaire I’d filled out when originally responding to the hospital’s invitation to have the operation, re-checking the answers I’d given. He seems confident I’m going to get approval for everything to proceed.
The original nurse returns to fill out blood and urine test forms and directs me back out to the main outpatients’ waiting room, with an instruction to sit on the red seats and wait for the tests. Red seats. Got it. Clever.
The weekend is spent on a couple of final, non-stop charges up and over Mt Vic, and shopping for a post-op “wardrobe” of OXX underpants of the Dan Carter design and very loose-fitting track pants. Classy.
Now I’m ready.
NEXT: Report at 7am – empty.
PART 7: Bloody hell – it’s all on
AT precisely 4.15pm on Tuesday, March 24, 2009, I made what seemed the most important phone call of my 62 years – to the hospital to see if I would go under the knife the next day.
“Yes, Mr Tucker,” said a cheery voice. “You’re number one on the list.” Report in at 7am. Don’t eat or drink.
Bloody hell. It’s on.
Right. Turn to colleagues and tell them…call to Lin to tell her…call to the boss…email to students to say I won’t be joining them at graduation on Thursday… quick video performance to say thanks to people for their support for the journalism course over the past year, something that will be played at the grad dinner…call to my brother…call to my son…text to a few other people and family…tidy the desk…last briefing to colleagues about the grad dinner Powerpoint show I’ve been putting together…install “out of office” assistant on my work email…and so on.
Get home to find something odd in the mail – a request (from the nurse who sent me to the “red seats” after the pre-assessment clinic to get my blood test) requesting me to get my blood and urine tests done urgently. A hand-written note says if I’ve already done this, please ignore.
That gives cause for last minute panic: they’ve lost my tests. The op will be cancelled. It’s after 6pm, so there’s nobody to call. Oh well, let’s see what happens in the morning.
My op is to be in the morning, so I can eat and drink until midnight. But I decide I’ve had my last Heineken the day before, so it’s an alcohol-free last supper.
There’s Coronation Street for distraction. And packing a small bag.
Early to bed. The alarm is set for 5.30am, though goodness knows why, since I can’t have any breakfast.
It’s dark, clear, cool next morning. It feels like getting up early to catch the Qantas flight to Melbourne as we drive 10 minutes to the hospital.
Several nervous couples are there, like us, to see one of their number off to heaven knows what.
We’re taken to a tiny cubicle, where a nurse gives me one of those ridiculous gowns to put on, although no advice on how to don it. I guess they assume we’ve all seen people wearing them in TV hospital dramas, arses flying in the wind. I leave my underpants on, and put on a once-fluffy white dressing gown, and blue plastic slipper things.
TRUSSED UP and ready to go.
She checks a few things (like date of birth and what I think I’m there for, which is reassuring). Have I had an enema? No. Hmm, that’s unusual. Oops, could this mean postponement? No, and no mention of the “missing” blood tests.
People walk past and peer in, then walk on. Other patients wander past, off to meet their fates.
A young male medical person comes in and cheerfully goes through the consent forms. They don’t mention that I’m having a two-for-one deal, a hernia on my left side patched up at the same time as the radical prostatectomy. He says he’ll get it amended for a re-signing, but doesn’t come back. Hmm.
Then we’re visited by the anaesthetist, who has bad BO and a mumbling voice, and a tendency to direct his inaudible briefing at some point beyond my left elbow. He leaves us with a lingering pong, and speculation about whether he’ll be as diligent at the job as he is with personal hygiene.
Turns out he is brilliant, later administering the spinal jab painlessly and with sure hands, and the general anaesthetic without leaving me with much of a hangover or – that apparent sign of ineptitude – a sore throat from the tube. Which goes to show you can’t judge a doctor by bedside manner alone.
Now we’re off, led down a floor or two to a bed. Surgeon Rod Studd calls in for a quick pre-op check and kindly offers to call Lin after the op.
He’s dressed down, it seems to me: dark blue jumpsuit and chunky, white dairy factory gumboots. Functional, I guess.
It seems I’m his only customer today. His afternoon operation has been cancelled because of a bed shortage. I’m not just number one on the list – I am the list.
Soon, I’m on my way, guided by a young Moroccan doctor, whose ethnic diverseness is but a small precursor to the sight awaiting me in the operating theatre: it’s like stumbling onto the flight deck of the Starship Enterprise, such is the diversity of face.
What looks like a dozen or more people go about their tasks quietly, without actually catching my eye, in that way people have when they know what’s in store for you, and you’re just apprehensive about about whether this is the last scene you’ll ever witness. Reassuring, in a way, because you believe absolutely that they will know what they’re doing, and with such a lot of them, all the bases will be covered.
I’m shifted across to a ludicrously narrow platform, the operating table, then asked to sit at its edge and arch my spine while the anaesthetist prepares to give me the spinal injection. It takes precision, for obvious reasons.
“Just a little scratch,” someone says. I like this term, the current euphemism everyone is using for “we’re gonna stick this needle into you, but it won’t hurt much”. Sounds a lot better than the old “just a little prick”, which was probably dropped for reasons of political correctness.
Next thing, I’m lying on my back, and a tube is inserted in a vein on the back of my hand and I’m connected up to something. I can’t see what.
Well, I can only imagine what happened over the next three hours…because, next thing, I’m fiddling away at something tickling my nostrils and someone is saying “you’re having trouble with that, aren’t you”.
It’s the oxygen feed, which – contrary to my belief from watching telly, does not involve tubes going up into the nasal cavities and down to the lungs – has a couple of short outlets feeding pure air into my nostrils, and they’re irritating the hell out of me.
But, hey, I’m awake. I’m alive. I’ve made it. Woohoo!
NEXT: Off to the circus for a couple of nights.
PART 8: There’s a party going on somewhere…but I can’t move
THE very first thought you have after waking from surgery that has split you from end to end is to not make any fast moves.
Not moving at all is good. Moving will result in something terrible. The stitches holding your body together will pull apart, allowing your insides to spill.
There are tubes coming out of somewhere and some sadist has made them of clear plastic so you can view the highly crimson contents as they siphon off to somewhere unknown below the foot of the bed.
There are other tubes going into your hand and into your nose. The hand one delivers clear fluid whose makeup you can only speculate about.
It comes from a machine that is behind you and which beeps. It beeps hysterically if you move. There is hysterical beeping everywhere in the ward. AND NOBODY SEEMS TO CARE!
There are a lot of people not caring. Some of them seem to be having a party just out of sight; you know it’s a party because they talk loudly and laugh a lot and nobody answers the phones.
Everybody is having a very good time, while you think you may be dying.
Then you notice something else. There is a woman in a bed opposite who is not staring at you. But she must see you, because now she’s speaking to you, in a wonderfully plumby English accent.
She seems pleasant. But you swear she’s saying the F-word under her breath every now and then, and that can’t be right, because of the plumby accent, which suggests she is not the sort of person who would ever swear.
She could, of course, be swearing at her beeper, which seems to go off a lot and which would probably make the Queen swear.
Then you have the urge to vomit, and remember that anything so violent would be just as bad as moving too fast, so far as your stitched-up body is concerned, so a lot of effort goes into suppressing the alarming mouth-water that always, for you, precedes chucking up. It works.
Am I dying? Well, no, because Lin is there, and she’s sitting in a chair beside the bed, and she’s not part of the party, and you’re reassured.
“How are you feeling?” I’m good. Yeah, good.
“Mr Studd says it all went well.” Great news.
I think that’s how our first conversation went, because it’s hard to recall.
Now angels are attending. The first of a constantly changing host; all young, mostly female, all gentle, caring, solicitous, and impossibly busy.
I drift off again, and Lin heads home to send out some emails to say the old boy lives.
Post-anaesthetic daydream two begins when I wake to find the shaggy old head of Terry Brown (just retired two-IC of Radio NZ and fellow boatie) peering at me in concern. Gidday, Terry. How are you mate? I’m good, mate. Good.
I have no idea what we talked about, but in the middle of what was probably a one-way dialogue I feel the bile coming up the old oesophagus in waves of biliousness. I hold it back by some miracle. Terry says he’ll leave me to it.
Daydream three is long and probably very tedious for Caroline, the sweet English lady in the bed opposite, because I suspect she gets the full family history.
I get hers, too, I think. She has come from her home at Lake Windermere in the English Lake District to Wellington for a family wedding, but has fallen ill with some mysterious malady that’s seen her confined to hospital for a couple of weeks, fed only through a drip.
She’s patient and courteous, a model inmate. Her impeccable manners make me feel ashamed I could ever have imagined I heard her swear.
Tea arrives. There is soup, something else I don’t recall, and jelly and ice cream. I attempt the latter.
Lin’s back, relaying messages of good cheer. My cellphone starts beeping text messages, and I’m alarmed temporarily, thinking such devices are surely banned among what appears to be a collection of sick and suffering patients, most of us just out of surgery and not feeling well.
But nobody seems to mind. Others are using phones. It’s only when I leave the ward a couple of days later that I note a big sign at the entrance saying they’re not to be used.
That night, after their fifth attempt, the meagre contents of my stomach (just jelly and ice cream) rumble up and neatly into a puke-sized bowl I’ve been provided. I wait an age before the only nurse who seems to be on duty comes past and I can get her to wipe the vomit off my face.
After that, my system settles down and I drift in and out of snoozes.
Full sleep is impossible. The party is in full rage, accompanied by the tunes of the beepers, an endless symphony whose cacophony has built immunity among the staff.
Every now and again there is an emergency of some sort as that other instrument, the nurse buzzer, is played by someone, somewhere. Mostly men calling for bed bottles, it seems, but occasionally for more serious concerns, like pain relief and heaven know what else.
Very often, it’s because some patient somewhere has the poor judgement to be concerned about his beeping machine.
Caroline has kindly instructed me about two vital things – the whereabouts of the buzzer (placed just out of my peripheral vision on the pillow behind me, a favourite trick of the nursing staff, I note later), and the location of the bed adjuster, a control panel that enables patients to make themselves more comfortable. That, too, was positioned safely out of sight down the side of the bed.
My last memory is of the unseen patient next door being removed, replaced by a middle-aged male who is very grumpy.
Next morning dawns with sunlight coming in the windows, my head a lot clearer than the day before, and Lin paying an early visit. The beepers are quiet, the party seems to be over…and I start to take an interest in my condition.
NEXT: We’re getting you up today – yeah, right.
PART 9: There was no party, of course – just a circus
OF COURSE, there was no party in Ward 29 of Wellington public hospital on my first day of post-radical prostatectomy recovery.
But it was a circus, and it stayed that way for the two nights and three days I was there.
What sounded like a party was in fact the ward admin office, which – I discovered when I finally ventured out of bed to go to the loo – was just over the corridor from my part of the ward, a four-bed room partitioned by curtains and thin walls.
The noise was staff. I’m not sure if they were loud or not; it’s just they sounded that way while I was still spaced out and needing peace and quiet. Why did they let the phone ring so long…and who the hell would keep ringing so long when it was obvious nobody was going to answer? Wrong number?
It was a circus because a constant stream of performers passed before our eyes and within earshot, each with his or her own act – doctors, nurses, aids, cleaners, caterers, visitors, patients, surgeons, the paper man (selling DomPos, bless him), administrators, technicians, managers, students, even a librarian, who popped in to see if anyone wanted something to read.
The worst performers were the patients. We were impatient patients, some of us, demanding, rude, loud, irrascible, unreasonable…and forever needing to pee (if we didn’t have hooked-up plumbing).
The nurses, by and large, were beautiful human beings, serenely immune to the grumpiness of their charges.
When you’re sick and helpless, anyone who is prepared to pass you the drink of water that’s just out of reach so you can dampen what feels like fatal thirst will be regarded with awe and limitless gratitude.
Well, maybe. The guy next door, whose ugly-sounding face I never saw, grouched endlessly at anyone who came near him, and spent long periods on his cellphone complaining about the service, especially “that silly little doctor”.
Listening to him (there was little choice), I felt ashamed to be a middle-aged man. Perhaps he’d been caught by the recession and hadn’t kept up his medical insurance, because he obviously believed he shouldn’t be in such an awful place among such people. He was someone used to being in charge; here he simply wasn’t.
The oddest performers in the circus were the lightning one-act players, people (not necessarily in white coats) who would sweep in, look blankly at my room-mate, Caroline, and me, say nothing, then turn and walk out. Who were they? What did they want?
In the end, we took to saying: “Yep, we’re all here.”
Now, let me take stock.
I’m lying on my back on a very comfortable adjustable bed (I’ve found the controls); I’m retained in the bed by sides, like a cot; as you can see from the picture, I’m wearing a nice little off-the-shoulder number (the classic “arse-flap” hospital gown); I have oxygen going up my nozzer; I have saline pumping into the back of my left hand (I beep when the drip dispenser behind me nears empty, which seems to be every few hours); I have a bedside cabinet on my left, but it’s too far back to reach (and I daren’t move); I have a tray-table on my right, also too far back to reach; I have the buzzer in the bed beside me, but I’m reluctant to try it, given the amount of buzzer-abuse that seems to be going on.
When I lift the bed cover I see a tube coming out of my lower right side, siphoning bloody liquid towards a container at the foot of the bed, and alongside it another tube which emerges from the end of my penis, this one taking bloodied urine in what looks like a constant flow (note to self: better drink more water).
I’ve had a breakfast of cold, leathery, white toast and marmite, and a cup of strong tea, and I’ve kept it down.
There is no pain. But my right knee feels numb, and my backside and lower back are getting sore (I never sleep on my back, usually).
However, there are plenty of distractions from such minor discomfort.
For instance, the arrival of the top-line act, a phalanx of doctors, fully-fledged and student, who appear suddenly, pull the curtains around, and peer at me with urgent interest.
“Hello, how are we today.” Never better.
The rest of the dialogue is the top man (who may or may not have introduced himself) talking to his throng. We take a look at the wound and pronounce ourselves happy.
Then we’re gone. Well, they go, I stay, none the wiser. Did I miss something? Apparently not. Right. Get on with the recovery.
One of the angels tells me I’ll be getting up today. Yeah, right. “Yes, miss, later.” Much bloody later.
Another one comes to fit my catheter bag. This takes some pondering, especially to cut the tubing to the right length. We agree the bag will be strapped to my outer right calf, just below the knee. A strap goes round my thigh to make sure there is no tugging on my willy.
At this point I realise the willy appears to have taken fright and retracted inside my body. Seinfeld loser George Costanza’s “I’ve-been-swimming” excuse for hyper-shrinkage has nothing on this. This…this is disappear-age.
What they say about leaving your dignity at the door of the ward seems all too true. Oh well. I’m sure they’ve seen it all before, even if they are young enough still to be at school.
Lunch arrives. Smells good, says Caroline, whose sole sustenance comes down a tube. It’s soup with industrial-strength taste of old shoes, a brick of potato-dominated frittata (inedible), and the ubiquitous jelly and ice cream. Mmmm. I get to fill out a menu for tomorrow; reads delicious. I order a drip, like Caroline’s.
Next, we lose the oxygen. And the saline drip. Finally, a nurse arrives to remove the drain. This becomes something of an ordeal for me and her because it enters my body at the most ticklish and sensitive spot I have. I can’t help but tense up as she withdraws tubing that measures 20 metres minimum. But it gets done, without fatality.
I amuse myself sending texts, especially to the class who will be graduating today. Miss you, guys.
A man arrives to offer a shower, advising that I need to wash the mess between my legs. What mess? There is no mess that I’m aware of. Later, buddy.
The hours slip away in pleasant conversation with Lin and Caroline, and her daughter, a constant visitor.
Then I muster the courage to get up. Am I boring you with this? Sorry, but it’s such a big deal when you’ve been lying there thinking of blood clots forming in your legs unless you go for a walk.
Caroline gives a thumbs up as I totter out and down the corridor – to find there are only two loos and they’re both occupied. I wait, enormously relieved that nothing has split or spilled, and I haven’t passed out.
Finally, I’m in…then, of course, pause to ask myself what I’m doing here in this spacious bathroom and toilet: I don’t need a leak (that’s taken care of).
So I have a wash and sneak a look in the full-length mirror, and see for the first time that below my conveniently swollen stomach I’ve been vertically stitched from just above the boys to just below the belly button, and I’m bald as a coot. They shaved me (of course), even taking a patch of hair off the top of one thigh.
Right. That’s enough looking. You’ll just make yourself faint. Back to bed, boyo, as fast as the legs and the stomach will go.
My rest from exhaustion is broken by a visit from the anaesthetist who did my pre-op assessment. I mention the numb knee; it’s a temporary after effect of the spinal anaesthetic, he says. Let him know if it persists. It doesn’t.
The afternoon ends with my submitting to a neurological exam on my head. The Asian doc who assisted with the operation has appeared with an admiring student, who needs a practice run doing the exam: “Are you bored, Mr Tucker?” Yeah, a bit. “Do you mind if we…” No problem. It passes some time. She does well, and I learn useful stuff.
NEXT: A night to remember, then home at last.
PART 10: Hint to hospital for success – train the patients
THE man behind the curtain is singing.
A sea shanty, I guess later, when I see him in the daylight. He was a seaman, by the look of his genuine tattoos. He’s 90, diminutive, walks with a frame, talks in a mumble, and he’s cheerful as a Leprechaun.
The nurses love him. Which makes it all the harder to do what they have to do to him: take his blood every half hour to check on his falling blood sugar.
It goes on all night in this, my new quarters in another part of the ward.
I was moved in the early evening, after the only decent meal I’ve had, beef stew and veg (although the carrot slices were rubbery).
A large woman in a uniform that bellowed rank (my idealised fantasy of what a matron would look like) swept in with a small army of underlings and marched me down the corridor by the scruff of my bed. I never see Caroline again.
My new room-mates are the 90-year-old and, across the way, an elderly Pacific Island man. The third bed is empty until some un-Godly hour, when a man in his 70s suddenly appears there.
Between them, Mr Seaman and Mr PI provide a distracting night.
When Mr Seaman isn’t being finger-pricked, he’s twisting his drip line and setting off the beeps, or buzzing the nurse to be taken to the loo (the bed bottle won’t do).
Mr PI, too, regularly tangles his drip and beeps, and he can’t ever find his buzzer, although that’s not surprising since the nurses seem to plonk it on the pillow just out of his sight.
Every half hour or so, he calls out: “Hallo, hallo!”
He looks pretty crook to me, so I become his buzzer man. I discover that buzzing once is useless, since the staff seem to be very busy, but if you give it three short blasts they come at a run.
He’s another with a recalcitrant bladder, but he doesn’t mind the bottle. Only trouble is, even though the nurses empty it and place it back in the bed at hand, he can never seem to locate it. So it’s “hallo, hallo…”
Halfway through the early hours he becomes quite animated and then performs the event of the night in our small and cosseted world: a bowel evac (his first in days, it turns out).
His English is limited, so there are some problems getting this request set up.
“What did you want to do, Mr …?”
“Right then, let me get the bed adjusted.”
“Um, well that’s what we’re doing. Did you want to use the bottle again?”
“Oh. Well, I’ll need to get a commode and some help…”
I know what you’re thinking: why am I detailing this? One good reason sprang to mind on this night to remember: cultural safety.
Wasn’t the nursing profession the first to make a fuss about training people to respect the cultural differences of minorities in their care? It was a big number in the 80s, I seem to recall.
So what was going on here? None of the staff seemed to speak this man’s language, or even understand fundamental phrases. The other thing they didn’t understand, it seemed, was his comfort zone when it came to being looked after by young Palagi women.
I’m not sure what you do about that, but there was a big difference in his behaviour next morning when a young Polynesian male nurse took over. For a start, he was more co-operative and bristled less.
There are some other hints I could give the Capital and Coast District Health Board about their systems, too.
The nursing staff (all of them wonderfully caring and professionally competent, from what I could see), were kept unnecessarily busy because patients were in the dark about such fundamental things as how to adjust the bed, where to find and how to use the buzzer, what it meant when the drip beeps kept going off, why they had to get out of bed as soon as possible after an operation, etc, etc.
How hard would it be to give people a briefing prior to the operation, then provide a one-sheet advisory that would be at hand once the anaesthetic hangover allowed comprehension?
Might reduce the workload on young people who looked to me to be working in an unacceptably stressful environment.
Take the buzzer, for example. By morning, I was able to direct Mr PI to find it on the pillow out of his peripheral vision, and he’d cottoned on to the way to get attention: three short blasts.
However, when he tried it, a nurse flew in and scolded him: “You shouldn’t buzz three times like that – we think someone might be dying or something.”
Well, yes, Right. But how about briefing us on that in the first place, and saving yourselves the panic?
Speaking of panic, I contribute some of my own about 3am when, in an effort to roll onto my side to get away from sleeping on my back, I pull the tube connecting my leg bag to the bigger, lower night bag right out of its socket. A lake of my best product soaks the bottom of the bed, including my stylish, knee-high clot-breaker socks.
Oh hell. I’m trying to be the best patient I can here, but look what I’ve done. The nurse is unfazed. Wow, the super-human patience of these people.
I decide this is probably the best time to have my first shower, so toddle off to the bathroom and step under the sweet warm stream – and discover with much alarm why the prep nurse was concerned about my not having had a pre-operation enema.
When the nurse comes in to check me, I turn and ask, pointing to my rear end: “Erm, what’s this?”
“Ooze,” she says. It’s possibly one of the best euphemisms I’ve ever heard. Right.
Another patient comes in through the unlocked door as I emerge in newly clean state, and reels back at the sight. Oh, right, yes, the scar, and the tube, and the bag. Can’t be an uplifting vision. “Sorry, mate.” Sorry, mate.
By the time I get back into bed, the sheets have been changed and I feel like a new patient.
The next time she comes in to check my vital signs (blood pressure, temperature), I’m dozing, and catch myself waving my hands around in the midst of a little dream.
“Are you all right, Mr Tucker?”
Yep. Just no longer feeling like a perfect patient after all.
NEXT: Set free to my own bed.
PART 11: All quiet on the Western ward…then home to my bed
THERE’S nothing like your own bed.
We’ve all said that. I kept saying it and saying it as I settled very slowly onto the king-size and took in the surrounds. Ahhh…
There was only one thing missing – a control panel to set the bed at any angle you like, a device that became a favourite toy during my brief time in the surgical ward at Wellington hospital. But you can’t have everything.
What I had instead was loving care from Lin, real food, McCavity the cat (pictured), a night shirt, HD TV to watch the cricket, radio to listen to RadioNZ National, a bottle of lime juice, remote controls, a toilet just down the hall, sun coming in through the window, a view of blue sky and rooftops, concerned neighbours, books, phones, a stash of fruit and an array of lollies (jet planes, 72% chocolate, liquorice, pine-apple lumps), enough painkillers to start a drug lab, well-wisher cards and flowers, the electric toothbrush, the bedside magnifying light…and, of course, some additional plumbing strapped to the side of my leg.
How did I get to this paradise?
Let’s step back a few hours on that notable Friday, the day I came home, just a couple of days after the radical prostatectomy operation that would change my life (and hopefully prolong it).
The morning began strangely in the ward. About 6.30am, after hours of little abatement in the circus – beepers beeping, buzzers buzzing, nurses poring over charts and administering, codgers trudging to the loo – everything suddenly changes.
The staff seem to vanish. This is probably entirely inappropriate as a simile, but it was like a concentration camp as the Russians approached – the guards melted away, and the inmates suddenly felt very alone.
The only person left to cope with the cacophony of beeping and buzzing is an elderly aid, who is preoccupied with cleaning up the mess from Mr PI’s “sit”.
Mr Seaman is half dressed and confused. His operation has been cancelled (all that finger-pricking for nothing). Mr PI is back to “hallo, hallo…” after his unfortunate experience with the buzzer. Mr Newcomer lies and listens to his radio and remains aloof.
Nobody answers the buzzers.
This goes on for about half an hour, then just as suddenly we’re “staffed” again, with a new shift of nurses frantically boning up on who’s in, what meds they need, what tests, and so on.
Mr PI is whisked away to the shower by a young Polynesian male nurse, who deals with him politely but firmly.
Mr Aloof has a visit from God, who tells him his operation is postponed.
As for me, well the phalanx is back, swooping in without warning, and we’re discussing my home-going. “Has he had a bowel motion?” asks Phalanx Leader, this apparently being one of the rules for freedom.
For some reason, I feel jocularity is required, so blurt out Billy Connolly’s line: “Never trust a fart.” Everyone looks blank (unsurprisingly). I’m trying to indicate that a movement is imminent, trust me, but the point is lost. We all let it pass (the remark).
I’m prescribed laxatives, which will replace the delicious kiwifruit concentrate that has been administered up till then to “keep things loose. We don’t want you straining…”
I’m introduced to one of the team, Bob Hale, the senior urology nurse, who will be providing catheter and post-operative care. Another mistake on my part: I relate my friend’s remark about everyone growing to love their catheter.
Bob is stern: having a catheter is one of the most uncomfortable (or a word to that effect) experiences a man can have, he says unsmilingly.
They move on, and I’m left to assume I can escape. I announce this to a nurse, who says fine, but I need to fill out some forms. That will take forever, so why don’t I get dressed and head down to the lounge. He’ll get the discharge papers mailed out to me.
Surgeon Rod appears, togged up in white gummies and dark blue overalls (he must be operating again today) and asks how I’m going. I’m good. No pain, and the catheter bag is starting to run Chardonnay.
Did he get it all? “I think so.” The lab analysis will tell, and he’ll have that in a week or so. He asks me to cough gently while he feels for the hernia, and it seems fine. “I’ll give you a call when I’ve get the results,” and he’s gone.
The nurse comes back to remove the drip valve from the back of my hand.
Lin arrives and we get me dressed. We’re off out of here, me waddling at pensioner pace and feeling strangely disoriented, woozy, frightened, hopeful.
Sitting in the lounge, we wait for a while, visited a couple of times by the nurse, who explains why the ward emptied out earlier: there was a major emergency in another section and everyone went to have a look. Oh well, it’s a teaching hospital, and people have gotta learn.
The handsome young Asian doc comes past and wishes me well. Surely, Shortland Street will snap him up before long.
Bob arrives with meticulous advice and my catheter take-home pack. He says the catheter will be in until the following Wednesday, when I need to come and see him at the urology clinic.
They’re in the middle of moving into the new hospital, so he’ll need to let me know if they’re ready that day. He’ll be removing the catheter and advising me on after-op care.
I totter down to the main entrance, feeling vulnerable and weak, and lean against a railing in the door airlock while Lin gets the car. The short drive home is dominated by pothole avoidance.
At home, I change into a nightshirt and collapse, slowly, into bed. And doze…
NEXT: Learning to love my catheter – not.
PART 12: My catheter – mon amour
Love him or not, Mr Catheter becomes a dominant part of your life after a radical prostatectomy.
I didn’t ever love mine, of course. And I see now that the guys who told me I would were just jiving, trying – prior to me having the operation – to make light of something that, as urology nurse Bob Hale wisely warned, is a very uncomfortable experience.
But, my God, having Mr C certainly gives you insight into the workings of your inner plumbing.
I will forever respect my bladder (although not to the extent of giving up Heineken). What an amazing organ. It’s working full time, day and night, judging by the flow I watched going into my temporary “outer bladder”.
As they say, you watch pinot noir gradually become rose and then chardonnay and finally lime juice.
When you’re lying abed, which I did for most of my first few days at home, the paraphernalia of a catheter is easy to manage during the day.
The bag is strapped to my upper right calf by a couple of adjustable elastic straps. It has a clear plastic tube running up through another strap around the thigh to a three-way junction, one of whose tubes – made of opaque grey plastic – enters the penis, and presumably heads up to the bladder.
Your first thought is – what the hell’s stopping it falling out. Aha. A little bit of Googling tells me there’s an inflatable balloon on the bladder end.
Ulp! How do they get it back out again? No, no, no – put that thought aside. That’s next week’s worry. None of my catheter-hardened friends have talked about that bit, although a female neighbour accidentally (I hope) recounts how much it stung to pee after she had hers removed.
Why do I have this thing, anyway? So far as I recall, nobody actually explained that prior to the op. “Of course, you have a catheter,” was all that was said.
The why is explained in some literature I read: the operation to remove the prostate requires the surgeon to cut the urethra (pee tube) off the bottom of the bladder and then reattach it afterwards. The catheter is needed for a week or more to drain the bladder while the wound heals.
All right. So lying still in bed is easy enough. You can check the bag every now and again and see when it’s getting full, which requires a shuffle down to the loo, where you hold the bag over the pan and open the valve. Just like peeing, but second hand, sort of.
The whole thing is a closed system to prevent infection, so the mechanics of it are intriguing.
What about other functions, like walking and showering, and what happens at night when you’re not awake to monitor the flow?
Walking is okay, so long as you get the bag straps right to ensure the full bag doesn’t pull downwards. and the thigh strap has the tube held at the right angle: AT ALL COSTS, YOU DO NOT WANT ANY PULL ON THE WILLY.
At first it feels a bit sensitive (rather than painful), and after a while you don’t notice the ingoing tube much.
Showering is easy enough – you just leave the whole thing in place. Only trouble is trying to get it dry afterwards. I invariably get a wet patch in the bed because the bag and straps are still damp.
Night-time presents the biggest problems at first. A second, larger bag is hung from the sheets by safety pin (carefully) so it dangles just above the floor. It is connected by tube to the tap-valve on the bottom of the leg bag, the idea being it will take the overflow and ensure the leg bag never gets completely full.
Unfortunately, we have a problem with the connection between the two bags. It doesn’t seem to work, and the lower bed is soaked. That means a bed change about midnight. Then it happens again, which means another change of bedding.
We haven’t thought to buy a rubber under-sheet, but luckily the pee doesn’t soak as far as the mattress. The washing machine runs red hot next day while sets of bedding (sheets, underlays, duvet covers) have to be washed.
We have another disaster the next night when I thrash around in my sleep and rip the connecting tube out of the lower bag, spraying urine across the bottom of the bed.
Poor Lin. I assure her we’ll look back and laugh one day, but I’m not sure she’s convinced. I’m not, either.
We change to the spare bags and tubes provided by Bob, install a rubberised sheet, test everything out, and hope for the best on night three. It’s all fine. No more spillages.
Aside from the catheter, there are other adjustments to make because of the fragile state of my lower abdomen. I compile an inverted bucket list of things not to do:
- Cough. Even throat-clearing has to be gradual.
- Get out of bed at anything other than glacial speed.
- Get back into bed at anything other than glacial speed.
- Sit in a chair.
- Walk at anything other than glacial speed.
- Strain on the loo.
- Reach for anything.
- Try to put on socks.
- Sleep on my side.
- Fold my arms on my chest (too much weight).
- Look at the scar (difficult, fortunately, because of a swollen belly).
- Allow anything to confine, bump, handle or in any way interfere with the boys.
- Wear anything other than XXXXOS underpants.
But enough whingeing. The recovery goes well, mostly thanks to Lin’s tender care.
I’m preoccupied for days sending text messages to well-wishers and calling people to let them know I’m okay.
I watch the third cricket test between India and NZ and try not to get depressed.
I eat ravenously, and since I’ve lost a few kilos, ignore my usual cholesterol-inducing food no-goes. I drink endless quantities of lime juice to keep the system flushed, and a lot of liquorice to loosen the other function.
I read books kindly sent by friends, and plough through a series of legal who-dunnits by John Grisham, my favourite writer.
I suffer no pain. There’s Panadol and a standby prescription of codeine (not needed) to keep me comfortable.
After the first weekend home, we get a visit from the district health nurse, a cheerful and competent woman, who has a student in tow. They look at the wound and she thinks it’s fine. After a chat, she’s away.
I settle in for some serious bed rest and the first real break from work in years. Heaven!
NEXT: Goodbye Mr C and hello Mr Pee, big-time
PART 13: Peeing like an 18-year-old…yes!
The 18-year-old occupies a mystical place in the minds of baby boomer males, because of a piece of supposed medical science that emerged when, for us, it was already too late.
According to this story, men at 18 were at the peak of their sexual powers: from then on it was gradual decline. The same story said women reached this stage at 35. The fodder for fantasy was extensive.
But 18-year-old males have another attribute, much under-appreciated by them – they can pee highest up the wall (even over it).
In the post-RSA generation of testosterone-driven management power games (the days of the Brierly boys) the epithet about young male managers competing to piss highest up the urinal wall ruled supreme. Metaphorically speaking, everybody in the board-room was eternally 18.
Now I’ve discovered a way to get it back: have a radical prostatectomy.
Surgeon Rod said this would be the case (although we didn’t use the 18-year-old simile), but I may have overlooked his advice on one of the better side effects of the treatment, because I was preoccupied with scoping my fears about incontinence and functional dysfunction.
My first pee after getting the catheter removed was spectacular. If you can stand the sight, click on the arrow:
Getting to this milestone, naturally, was not uncomplicated.
After six days of Mr Catheter, Bob Hale rang from the Wellington Hospital urology clinic to say they’d successfully completed the move to the new building and my tentative appointment for 1pm was confirmed. I got there to discover I was his first ever patient in the new quarters.
I hid my terror beneath talkativeness. How was he going to get this thing out of my thing without it hurting like hell?
First things first. I laid on the bed and he prepared to remove the clear plastic dressing from my wound: “Open your eyes,” I was instructed. “There’s a bit of hair regrowth…” Off it came. No problem. No pain. Every gain.
He had a young Indian med student with him, so Lin and I got a good running commentary on procedure.
Next job: to very gently pump 150 mills of water up the tube and into my bladder. Lying back on the bed, I was unaware of the process.
Then: “Open your eyes.” He was going to withdraw the tube. Oh shit!
But…nothing. I FELT NOTHING! And then it was out. Big phew! What a master.
Okay, says Bob, gently sit up. He held a pad beneath my willy. Nothing leaked.
Okay, now sit on the edge of the bed. Same. No leakage. “Excellent.”
Now stand. Just a drip or two.
Okay, here’s the bottle. He turns on a tap to run water, and he and the student retire behind the curtain. I think to myself: ‘It’s okay, Bob. I’m not piss proud any more.’
I pee. “Listen to that,” says Bob. “That’s a very good stream.”
Exactly 150 mills in the bottle. Splendid.
Next, he fits an absorbent pad to the inside of my Dan Carters.
It’s there to take any “accidents”.
It has a sticky side which adheres firmly to the material of the underpants. Ingenious.
The pad he uses is bulky and I immediately think of Elizabethan gents and their cods-wallops.
Later I discover that pads come in various sizes.
I’m able to switch to slim versions that are barely noticeable.
I also discover by accident just how clever the mechanics are.
I drop one into the toilet pan and when I fish it out, there isn’t a drop spilt as I transfer it to the rubbish bin.
Now that’s absorbent!
Women readers (if there are any) will be smiling, I guess, since I now realise their knowledge of absorbent pads is a lot greater than that of me and my male peers.
Next, Bob runs through the exercises.
Exercises? Yep, I will need to learn to flex my pelvic floor muscle.
Let’s give it a try. Yep, I’ve got it straight away: feels like tightening the rectum, while the willy gives a little twitch.
Practice at this will be needed over following weeks so the sole remaining sphincter (valve) at the foot of my bladder isn’t required to do all the work when it comes to damming things back.
A well-trained pelvic muscle will complement the process, and stop me peeing myself at the wrong times, such as when I cough, sneeze or get up suddenly from a chair.
Back home, I get the urge to have my first try at freelance peeing.
The result is a shock.
I’m used to hunching above the pan with my left forearm leaning on the wall, but now it’s an entirely inappropriate stance – my urine emerges in such a rush of fire hydrant power it hits the back of the seat.
I reel back and find I can get it in the pan from a metre away.
I let out a whoop that has Lin running into the bathroom in panic. Wow, the sheer joy of it, after years of struggling to get a stream.
A friend told me before the operation he had seen men in tears at the urinal of his club, desperately trying to have a leak. If any of them are reading this, think about it.
If this is “quality of life” change, then I’ll take it, thanks.
NEXT: Bloody disaster!
PART 14: A hand too far…oops
FORGET Marx, Kinsey, Salinger, Solzhenitsyn, et al: in my view, Philip Roth wrote the 20th century’s most revolutionary book.
Portnoy’s Complaint, his 1969 account of sexual frustration and the creative solo ways it might be relieved, changed everything for young men around the world.
Brought up on our fathers’ homilies about “self abuse”, blindness, insanity and the growing of hairy palms, we were liberated by Roth’s frank revelations about masturbation, although not necessarily uplifted.
His tale of the fate of a parcel of liver ‘twixt the neighbourhood butcher shop and his family dinner table was compellingly shocking.
Why am I telling you this?
Regard it as my version of the television AO warning: readers may be repulsed and offended by the content of the following story.
Got your full attention now? Good, let’s proceed (but you have been alerted).
During the various processes already narrated in My PC Adventure, there was opt-repeated medical advice that I should visit the rehab clinic after my radical prostatectomy for help in regaining erectile function. Polite term for being able to get it up again (sorry, but let’s be frank about this).
I learned that restoration of spontaneous nocturnal erections is important for the good health of the old fella. The sooner the better. There was talk about injections (ahhh!), Viagra and other stuff.
Fair enough. I booked an appointment for about a month after the op.
But then, home alone 10 days into my recovery and a couple of days after the catheter was so deftly removed (and I was continent, and peeing bloodlessly and with commendable force) I decided perhaps I should just experiment a little, freelance, to see what happened. To see, I suppose, whether I really needed to go to the clinic at all.
Spending $12 on a viewing of SkyTV’s Spice porn channel seemed like a justifiable investment.
It was slow, at first, but, hey, bingo: 75% function. Woohoo!
But wouldn’t you know it. That other warning from our fathers about the standing thingamajig having no conscience (or, in this case, no sense of caution) turned out to be so, so accurate. I was like a teenage driver – no frontal lobe development, no sense of fear, invulnerable and reckless.
An orgasm at this early stage of recuperation seemed like a miracle (although I’ve since read on the web of some idiot who had intercourse the night after his op…and suffered two days of agony in return).
My agony started about five minutes after the feeling of euphoria began to fade.
What agony! It resembled something called “lover’s balls” that an adolescent male can suffer if, as Mick Jagger puts it, he can’t get no satisfaction after a period of prolonged tumescence (an hour or two of holding hands in the movies with the object of one’s desire will do it).
I upped the painkillers, trying the codeine for the first time. No relief.
After an hour, I rang Lin at work and gasped that I needed to go to A and E. Could she come home and take me, please?
My explanation in the car on the way to Wellington Hospital was met with amusement and sympathy.
At A and E, I staggered around in the empty waiting room while the bureaucracy filled out my name, date of birth and other obviously vital statistics, then – after 10 excrutiating minutes – I was led through to a bed.
I blurted out a coded explanation, well rounded with verbal self abuse, while they pumped in increasing amounts of morphine, to little effect.
Then I raised my knees and the pain suddenly subsided. I saw why when I looked into my underpants and saw a spectacular amount of blood emerging from the end of my penis.
A specialist ran a scan over my belly and said the news was good – no blood in my bladder. He rang surgeon Rod for advice.
A couple of hours later, I was able to pee into a bottle, so they allowed me to go home.
Little did I know, my troubles were just beginning.
Doped up with morphine, I dozed through Coronation Street and something else, then – about three hours after getting home – went to the loo.
Oh hell – nothing. Even though my bladder felt full.
I returned to bed and dozed, awakened every hour or so by the urge to pee. But nothing would come. And the agonising pain was back.
About 4am, I decided I needed to go back to hospital, probably to have a catheter inserted again to clear whatever was blocking the tubes. As I dressed, doubled up with pain, I had a sudden urge to go at the other end.
When I did, the pain eased off greatly, so we postponed the run to hospital, even though I still couldn’t pee.
At 6am, I got up to try again – with spectacular result.
A blood clot the size of a .303 bullet shot out and smashed into the back of the toilet seat, followed by a gusher with the momentum of Huka Falls.
Oh my God, the relief! It was over.
In fear of the clotting happening again, I drank copiously and peed hourly for the next couple of days and nights, after which the blood cleared from my urine and everything felt fine.
Rod rang on the Saturday morning to see if I was okay. He explained that while the performance was encouraging, it had caused a spasm in my pelvic floor muscle, and since things were “still pretty raw down there” that had caused the bleeding.
Had I done any permanent damage? He doubted it very much. Just relax and take it easy.
NEXT: Being a patient patient.
PART 15: Two out of three ain’t bad
“It’s good news…” the surgeon begins.
After that, his words are a blur.
When you’re a cancer patient and you’re taking a phone call from the doctor about your test results, you’re not really going to hear much beyond that wonderful opening line.
It’s a Monday morning, 12 days after my radical prostatectomy, and surgeon Rodney Studd is relaying details of the lab analysis of the cancerous prostate he’s removed:
- The cancerous cells weren’t near the margins of the organ (which meant they weren’t touching anything else and thereby spreading);
- They were non-aggressive – a lowly 6/10 on the Gleason scale.
That’s two out of three, he says. Good news, indeed.
Erm…the third thing?
Ah yes, the PSA blood test I need to have a few months after the operation when there has been time for everything to settle down.
If that shows negative, I’m good to go (although I will need to be monitored in future to make sure nothing in there is changing).
It’s time to celebrate, even though his call follows a tense weekend as the after effects of my little accident the previous Friday begin to subside.
Blood and clots cleared quite quickly and my urine is clear again, but it’s hard to rid my head of the thought I’ve done some permanent damage.
Rod’s call certainly helps. I need to spread the news.
Lots of phone calls and text messages later, I’m exhausted and sleeping. When Lin gets in from work with a bottle of Bollinger, I can manage half a glass before dozing off. Some party.
The week plays out anxiously.
By Wednesday, blood drops have returned to the urine. However, it’s oldish looking blood and it’s watery, so perhaps my system is just clearing itself out. Lin consults Dr Google, who tells her this is a natural occurrence.
I want to call someone, but it’s Easter.
I try to get myself moving about more. My first proper walk is all of 100 metres down to the bus stop and back, and it goes okay, duck-shuffle though it is.
Next day I go up the street to the other bus stop, twice the distance away, and in my enthusiasm start to walk quite quickly, forgetting I’m supposedly an invalid.
Then I hang out the washing. I sit at the computer and hammer out a blog. The bleeding gets a bit worse.
Have I overdone it? Hell, I wish I knew.
On Tuesday, I shoot an email off to Rod with a still picture attached showing the colour of my urine.
I leave a message for Wellington Hospital urology nurse Bob Hale.
Bob gets back first. No problem. It’ll happen for a while. Don’t worry.
Rod emails back and says the same thing, and compliments me on the strong urine flow in the picture, which he says I must have taken one-handed.
I relax a bit. As they predicted, the blood gradually disappears, and is gone altogether by the weekend.
After 18 days, my scar has healed beautifully and the only sensitivity I have is from the gens, which are still slightly swollen.
I use a horseshoe pillow on the computer seat to give a bit of clearance.
Then another problem arises – the dreaded incontinence.
So far, this hadn’t been an issue. But, mysteriously, when the blood disappeared, I suddenly found I was having trouble holding it back whenever I climbed up from the sofa or a chair or out of bed.
Right – get back to the pelvic floor exercises, which I hadn’t been able to do for a while because of the raw feeling in my groin.
The feelings of leaking slightly last just a few days. Then, everything seems to be back under control.
I sleep six or seven hours without having to get up to pee. This is helped by taking my blood pressure pill – a diuretic (piss-inducing) – in the mornings.
I try my first can of Heineken. Nectar. But just one a night.
The walks get longer.
The autumn weather has been superb for Wellington, calm, sunny, warm, perfect for perambulations around the block. I shed the slippers for proper shoes. I’m even trying hills (small ones – Mt Vic will have to wait).
I wish we had a dog. I feel like an old perv on the prowl. I start carrying my camera on my shoulder, which at least makes me think I’m walking slowly with obvious purpose.
Here’s one of the results – a beautiful day down at nearby Evans Bay. It’s nice to have time to look at things properly.
I’m on the mend. For sure.
NEXT: Sorting out the other thing.
PART 16: As Freud said, it all comes down to sex
Freud said that in the end everything comes down to one thing – sex.
He was right, if you look at the way this story is ending up. To be more precise – at the Erectile Dysfunction or Impotence Clinic (I prefer the first – sounds more optimistic).
So far, my recovery has been orderly, on target and highly encouraging, but there remains this question about erections.
The question is more in my mind than that of the people treating me, who are strongly urging an early course of rehab treatment.
That’s because the sooner it’s started, the better the likely results. Put another way: “If you don’t use it, you’ll lose it.”
However, the signs are actually good.
I don’t appear to have suffered permanent damage, there’s no blood anywhere, I’m getting the occasional nocturnal/early morning spontaneous erection, and with a bit of mental effort and careful massage, the same result – with about 90% function – can be achieved.
So, a month after the radical prostatectomy, off I go to the clinic to find out more.
The nurse/manager is someone I knew 40 years ago when we were youngsters growing up in the same town, so a bit of time is spent catching up.
That eases any tension or embarrassment, not that I actually feel any, to my surprise.
Right. Down to business. It consists of the nurse taking me through the various options, which begin with prescription drugs.
The one the clinic prefers is tadalafil (Cialis), mainly because its effects last longer.
Here’s what the clinic website says:
Oral phosphodiesterase type-5 inhibitors (PDE5 inhibitors) such as Viagra, Cialis and Levitra are first line therapy for ED.
The efficacy of sildenafil (Viagra), vardenafil (Levitra), and tadalafil (Cialis) are very similar. Because efficacy is very similar amongst the three agents, side effects and time-to-onset will be the main distinguishing factors.
Viagra and Levitra feature rapid-onset of action, whereas Cialis has a long window of opportunity for use.
Maximum levels in the bloodstream are reached within 45 minutes with Levitra, an hour and 10 minutes with Viagra, and 2 hours with Cialis. Conversely, the half-life of Viagra is 4 hours, for vardenafil 4 to 5 hours, and for Cialis 17 to 21 hours.
Apparently, the oral drugs aren’t particularly effective in prostatectomy rehab.
But since the other options look far more challenging, I guess we all want to start with something as simple as popping a pill.
I’m given a couple of samples to try at the appropriate time.
By the way, when is that? Is intercourse okay? Yes, absolutely.
Oh. I’d read a comment on a US discussion group in which a surgery patient was told to encourage erections by all means, but not to touch for about three months.
The nurse is surprised. Hasn’t heard that. I think I’ll go with her advice, and make a note to treat the comments of fellow travellers, well-meaning though they be, with some caution.
Next, we talk about something that makes the boys cringe just at the mere mention: injections. And not just injections, but self-administered ones.
However, it’s not as bad as I imagined, I think, as we go through it (although that judgement will be made if/when I try it).
The needles are very tiny and they are meant to go into the flesh on either side of the member, not blood vessels (so we steer away from the top or bottom).
The drugs recommended by the clinic are Papaverine and Phentolamine. A third, prostaglandin, apparently causes a bit of temporary pain after it’s injected, so we don’t go there in my case.
I’m given what is informally dubbed a starter pack, two week’s supply of Papaverine/Regitine – three pre-filled syringes to inject each week.
The nurse takes me through the injection procedure, including warnings. For instance, if blood appears in the head of the syringe I’ll know I’ve hit a blood vessel and should withdraw and try again.
The needle goes in either side, between the base and half way along (I won’t say “up”, because we’re not there yet). That way, stiffness is induced near the base, which is where you need it, obviously.
You need to vary your target so as not to cause scar tissue.
The biggest thing that can go wrong, it seems, is that old adolescent affliction I referred to earlier, clumsily, as “lover’s balls” – priapism.
This is the erection staying up there for four hours or more, instead of the hour or two that’s intended.
The nurse has had only one such case in years, so that’s encouraging. But if it happens, you need to head for A and E and get them to give an antidote, as well as drain off the “old” blood. Gulp.
Okay, what else?
There’s the vacuum pump, which is used to literally suck the penis into shape.
The clinic has a couple and it can lend one to me, if I want to try, or I can head for an adult shop and buy one.
I daren’t ask why they sell them, but I suppose I can guess.
Ones in the sex shops are as cheap as $80, while the top of the range ones like the clinic owns cost nearly $700.
I’m far too squeamish to think about them.
So what do I want to do?
I pick up the pills and syringes and promise to go home and consult, and think about it.
From what I’ve described about my current condition, she says it’s possible I won’t need anything.
But I need to think carefully about it: if it becomes apparent I need more help and the pills aren’t enough, I will have to seriously consider the injections. If I decide against them now, it might be too late a year down the track.
How long would I need to use them? A year to 18 months. Hmmm.
I have read in my web-searches that spontaneous nocturnal erections are important for penile health. So that alone, from a purely selfish perspective, means I need to take this aspect of my recovery seriously.
Hanging up my boots may not be an option.
I’m not sure if I’m going to let you know how I get on. Perhaps there is, after all, a limit to my self-inflicted privacy intrusion, and it’s not just my privacy that’s involved from here on.
NEXT: My prognosis.
PART 17: Am I cured? It’s too soon to know
Am I cured of prostate cancer?
I don’t know. The signs are already good, but I’ll just have to wait. I’m officially in limbo for the next 17 weeks.
I have no further appointments with the medical profession until late August, when I need to get a PSA blood test and then a few days later have a followup visit with the surgeon. Then we’ll know more.
It seems the magic “c” word is elusive. My prognosis is good, excellent even, but saying I’m cured is simply not possible, because this is a very complicated business.
About 30% of men who have a radical prostatectomy like I did will have what the profession calls “biochemical recurrence”.
Here’s the US Cancer Institute’s explanation of what that means:
A rise in the blood level of PSA (prostate-specific antigen) in prostate cancer patients after treatment with surgery or radiation. Biochemical recurrence may occur in patients who do not have symptoms. It may mean that the cancer has come back. Also called biochemical relapse and PSA failure.
How likely am I to be among the 30%?
Highly unlikely, it would seem. The reason is the cancer in my prostate was caught early, before it had time to surface at any of the margins of the organ, which is the bad thing that can happen as the cancer grows.
Once there are “marginals”, there is the chance of the tumour spreading into lymph nodes and the nearby .
Here’s how MedicineNet.com defines seminal vesicles:
Seminal vesicle: A structure in the male that is about 5 centimeters (2 inches) long and is located behind the bladder and above the prostate gland. The seminal vesicles contribute fluid to the ejaculate.
Wikipedia says this about lymph nodes:
A Lymph node…is an organ consisting of many types of cells, and is a part of the lymphatic system. Lymph nodes are found all through the body, and act as filters or traps for foreign particles. They contain white blood cells. Thus they are important in the proper functioning of the immune system.
So, if you get cancer into nearby parts of the body like the vesicles or into the lymph system – and thereby spread through the body – the chances of advanced cancer increase.
There are drug and radiotherapy treatments for such eventualities, but the chances of long-term cure are proportionately lower.
Why am I waiting 17 weeks for the PSA test, and why is it done after the cancerous prostate has been removed?
To rehearse some earlier facts from my case, my PSA levels have never been high. The test prior to diagnosis showed .77, when up to 4 or 5 would have been acceptable for my age.
I have a friend whose PSA has been rising and is now about 20, but three biopsies have failed to find any sign of cancer. In my case, low PSA did not mean I did not have cancer (I did).
The wait is to allow my system to settle down, since surgical intervention can release the antigens into the system and temporarily raise the PSA in a way that is not helpful to diagnosis.
After five months (the operation was on March 25), that all should have settled down and an accurate reading should be possible.
What are we hoping for? Well, a nil result. Zilch. That would mean no biochemical recurrence…and no cancer.
The other thing in my favour is the low Gleason grade given to my tumour: at 6/10 it is the lowest meaningful result used. That means the cancer was of a low aggression type. It would have taken years to migrate out of the prostate.
So. I’m hopeful of the nearest thing to a cure you can get.
No doubt I’ll need to continue with the PSA tests for a few years just to be sure. Biochemical recurrence can occur some time after surgery. But in my case, it seems unlikely.
A recent web item said spouses and partners end up more worried about cancer recurrence than the patients. So it’s time to find out what Lin thinks of all this.
NEXT: Another side to the story
PART 18: A wife’s side of the tale
By Lin Tucker
A few of weeks before Christmas, 2008, a very worried Jim told me that our GP had found some roughness when performing a digital examination of his prostate.
He’s the family worrier, so I went into reassurance mode with comforting words such as “found something early”, “stats in your favour”.
I must internalise worry, because no alarm bells rang: maybe it’s the two years of nursing training I did, so I understand the odds are usually in the patient’s favour.
Besides, Jim has had regular checks and his PSA reading was never high. Well, that’s what we thought then.
Fast forward to Christmas Eve: my niece from Canada has arrived to spend Christmas with us. Jim says he still hasn’t heard about his biopsy test results. I say “no news is probably good news. However, if you’re concerned, why don’t you call the surgery.”
He calls, and the nurse says yes, the results are back, but you will need the doctor to interpret them. A small tingle replaces the former insouciance I have been feeling.
Some time later, the doctor hasn’t called back, so Jim phones him and is told that the tests show cancer cells present, but the situation is not considered so urgent that it couldn’t have waited until after Xmas. An appointment will be made for him to see a urologist.
The cancer word is a bit scary, although Christmas and a vacation with an old nursing friend are enough to keep my mind from dwelling too long on any worst-case scenarios.
Jim doesn’t follow the accepted male ideology that you ignore symptoms; he is not shy about getting medical advice and for this I’m grateful. It means that as a partner I’m fully informed about the options, as – being a journalist – he will have done exhaustive research.
Knowledge is powerful as a tool for my peace of mind. If I can rationalise, I can cope.
I took him to the hospital for the biopsy prior to Xmas. Although the procedure is not entirely pleasant, Jim didn’t find it too much of an ordeal. But after the effects of the biopsy, which was quite invasive, he needed a bit of looking after.
Jim made another visit to the urologist just after New Year and returned with material to read and view, and a request to discuss it with me and make a decision about treatment.
At the end of January, I go with him for the treatment consultation. The urologist is young enough to be up-to-date, but old enough to have some gravitas, which is very comforting.
We’re informed that three of the 12 samples have shown cancer. On the positive side the cancer is not of an aggressive nature.
The urologist mentions “margins”, where the cancer cells might have migrated to the surface of the prostate and affected other tissue. Not quite so straight-forward after all.
On balance, though, things are more favourable than not; I tend to concentrate on the positive.
Right from the beginning, Jim is keen on having a radical prostatectomy rather than brachytherapy. I’m a little worried that he’s making the decision on a cost basis, but the literature seems to lean that way. The urologist says he is a good candidate for surgery.
Jim can have the operation done at the public hospital by the same urologist, so we wait for a date. Hospital surgery waiting lists vary and Jim is hoping it will work out during his between journalism courses, a break when he can have plenty of recovery time.
His wish is granted – March 25, the day before his students graduate – oh well.
By now we’re in early March and I’m given the “realignment” news at work. I’m numb: another team has also been disestablished. Work is a flurry of shock, questions, and a couple of weeks’ consultation period.
The following weekend, we’re off to New Plymouth to enjoy the wedding of Jim’s niece, Jaclyn. It should be a wonderful weekend catching up with his nephew’s newish son, family and friends and getting our minds off the pending surgery and redundancy.
The operation itself doesn’t worry me unduly. However, the risks of anaesthetic are very real and I’m feeling some disquiet, while trying not to show it.
The wedding day is wonderful, perfect even. The weather shines, the venue is fabulous, the bride’s mother and father behave well (their rift is still somewhat raw). Tensions are non-existent. Jacs is marrying an Australian and he has plenty of family and friends for support. The speeches are hilarious and heartfelt. The bride’s sister, Philly, makes a very warm and loving speech to her big sister. We leave at 11pm and they’re all dancing up a storm.
Next morning, we’re sleeping in when we’re woken with a message that Rob is trying to get hold of us: some accident…Philly’s seriously ill in hospital. We get to the hospital and find she is in an induced coma and they have called a helicopter to take her to Wellington, but they need to carry out emergency intervention!
We try to console each other, joined now in a wave of horror equal to the joy of the day before. It is all surreal. We take Rob’s wife home and keep busy with household chores, when we’re called to say the outcome is not good. We rush back to the hospital.
I stay outside minding the young ones, who are moving quickly into shock, recalling the morning’s events of hearing screams, Philly on the floor of the unit, having apparently fallen from the balcony above.
About 2pm, she is pronounced dead and we go back to Rob’s to prepare for the coming funeral in four days. The Aussies and guests silently file back to what was going to be a post-wedding friendly international cricket match. Instead, the wake starts.
The family tensions buried for the wedding quickly resurface under the stress. The estranged fiancé and his family are also in the mix; it’s not pretty. Eventually, we farewell the yellow coffin.
Due to the funeral, Jim has to change his pre-op check date, hoping he will not lose his place in the operation queue. I am hoping for this, too, as I don’t think I can stand any more waiting to get his situation resolved.
Away from the funeral-wedding, we start to prepare mentally and physically for the operation. When we go to town he walks home to Hataitai over Mt Victoria to get fit. I’m unable to concentrate much at work.
Jim and I head for Wellington Hospital at 6.45am on Wednesday, March 25. He has a bag packed with PJs, clothes and toilet gear. We spend an hour or so in a small room with no windows where he changes into the sexy nightgown, socks and hat. No need for the contents of the bag – I take it home. Nobody gives clear instructions that you will spend the small time in hospital in their gear and won’t need clothes until you are discharged.
A number of staff come in with their various checklists and tick off all the boxes, some for a second or third time. Part of me is glad they are being so careful and another part is just screaming “get on with it”.
We are then escorted up to pre-op, where he is put in a bed. More checks and a visit from the surgeon. I’m relieved when he promises to call me after the op, which should take three to four hours.
I wave Jim through the doors and set off home. We live only about five minutes away, and there’s no point hanging around the corridors.
I had intended to go into work, but there’s no point: my mind is mush. I go home and wait. About noon, one of Jim’s work colleagues calls. I tell her no news yet.
At 12:25pm, the urologist calls…relief, all went well and looks good. I figure that is code for no obvious signs of marginal cancer cells…hope I’m right. I let out my breath.
I have Jim’s cellphone, so I text all and sundry, call close family, and head back to the hospital about 3pm. It’s going to cost a fortune in parking fees.
He’s sitting up in bed looking morphine-sleepy. I don’t stay long, leave money for a morning paper, his cellphone with all the incoming well-wishing messages. It was good to touch him and know he’s okay
Next day, I come back at about 10am when visiting starts. He’s had a reasonable night, aside from bringing up the jelly he tried for dinner. We visit until lunch, then I leave. I go back to tuck him in late afternoon.
That night wasn’t quite so good, bit of pain. Next day it’s up and showering, the drain having been removed. He may come home tomorrow.
Yes, after the night from hell (including him wrenching the catheter tube out and wetting the bed thoroughly), having been moved from the “must-be-watched-closely cubicle” across from the nurses station to one around the corner, he is happy to be coming home.
Eventually we’re allowed to take him, and his spares home. I drive carefully, but Newtown roads are not in good shape. You would think streets and roads around a major hospital would be smooth.
At home, Jim is doing well and the first night we attach the extra catheter bag for the night and all goes smoothly.
We are lulled into a sense of false security. The next night, the valve joining the bags doesn’t work, so I’m changing a wet bed at about 3am. The following night I get to change it twice. Finally we get it right.
He gets the catheter out after six days. This process is very interesting, as this is a teaching hospital and I learn a lot. I take JT home with his “pad”. I’ve purchased a “dry sheet” for any accidents: I’m too old to be changing beds in the early hours of the morning. I sleep patchily as it is.
At work on Friday I get a call from JT at 3pm. He sounds in severe pain: “Come home, please. I need to go to A & E.” I make the fastest trip home. On the way to the hospital, he tells me how he came to be in that state. Feeling chipper he found that he was getting some penile action, so he tested it to the point of orgasm, which caused muscle spasm of the acute variety.
Oh no, I thought. I hope this doesn’t put his recovery back at all.
ED do their thing with so much pain relief an elephant would be downed. Then he’s finally able to pee and the pain stops. He can go home.
But this is not to be the last of his tribulation. That night he has trouble peeing and at 3am I get the car out of the garage (why do all these things happen at this hour) for another trip to hospital. Sorry darling, but I’m just so tired.
But then he passes a massive clot. Much relief, more mess, but the pain is over, and recovery resumes.
Eventually, the blood in the urine passes, and normality (whatever that is) returns.
Each day I come home, JT looks and seems to feel better. I am so enjoying his recovery. So far, so good.
NEXT: Spreading the news.
PART 19: Is PSA-testing all 40-year-olds answer to Screening debate?
Writing about prostates is a treacherous business.
Not only is the topic a medical, political and emotional minefield, but it seems almost everyone on the web suffuses their prose with enough passion to fuel an AA meeting.
There’s a hint of ideology in many a treatise, PR hiding behind innocent-looking blogsites, and fear, loathing and frustration at the absence of a sure way to determine a cancer patient’s prognosis without cutting into him and creating an unnecessary mess.
The elephant in the forum room is the question of screening.
The word is easily misunderstood by us newcomers to the debate.
I’ve been politely advised there is screening with a little “s” – that’s standard individual testing (PSA/digital) you can get your GP to do – and SCREENING!, with a capital “S”, a loaded meaning and an exclamation mark.
The latter is a government-funded, national, population-based campaign to convince every male above a certain age (that’s disputed, of course) he needs to be checked.
As far as I can find out, no country offers this seemingly commonsense service to its aging male citizens.
The reason is that the outcomes of mass screening may be “over-diagnosis” and “over-treatment”, a couple of overs with more googlies and bouncers than a cricket test.
With mass screening, according to official (and some medical) opinion, we would discover cancer in many more men, but there would be no sure way to decide what to do with them.
It would create unnecessary worry and/or unnecessary decisions to undergo risky and/or expensive treatment that could have unpleasant side effects like incontinence and/or impotence.
Nobody can with all certainty place men diagnosed with prostate cancer into one of two categories – those who should be treated and those who should be merely watched.
Men cannot be guaranteed to react to news of an early cancer diagnosis (the whole idea of Screening) with any certainty, either:
- some with aggressive cancer will be relieved to grab at treatment;
- some with non-aggressive cancer will want treatment anyway, because they don’t like the thought of a scary disease lurking within;
- others will be sanguine and able to wait;
- and others will say bugger the danger, I’m not going to risk losing “manliness” and my ability to procreate (or at least practise at it, like Bob Trimbole).
Some people ask why push for national screening when already more than half the population already seeks tests from GPs?
There may be a simple rejoinder to that – some macho Kiwi blokes won’t go near a doctor unless they’re already dying, and some sectors of society (Maori and Pacific islanders, for example) don’t habitually seek regular checkups.
What would Screening do to the worrying statistic that shows twice as many Maori prostate cancer patients die as Pakeha ones? Are breast and cervical cancer screening campaigns on TV being aimed specifically at Maori and PI because of this factor?
As the last couple of paragraphs demonstrate, prostate cancer has all the intricacies of a Shakespearean drama:
- It affects a part of the male anatomy beset with cultural, psychological and physical conundra.
- It comes in enough varieties to make diagnosis and prognosis uncertain, even after invasive treatment.
- It’s sneaky: it may remain benign for decades and still be harmless when its host dies.
- It’s dangerous, because sometimes it has no symptoms, and when it’s finally discovered it may have fled its capsule and be wreaking fatal havoc elsewhere.
- It’s common enough to warrant political intervention and commercial attention.
My blog about prostate cancer began as an attempt to use my professional career as a writer and journalist to describe in great detail what it’s like to be a patient. Nobody else seemed to be doing that here.
However, as I started to do research to ensure reasonable accuracy and usefulness, I discovered the traffic in prostate information on the internet is immense.
For instance, WordPress, which hosts this blog, lists 10,000 to 12,000 prostate blogs a day, and they’re constantly changing.
When I’m posting daily news updates about prostate cancer this blog rates on the first of the WordPress prostate blog pages, but a few days into my current holiday I noticed Prostablog had dropped back to the sixth page.
The blog has grown to include daily links to prostate news, a time-consuming job given an upsurge in the US debate following publication of a couple of long-term studies, as well as an excellent two-part series in the Wall Street Journal.
By contrast, interest in New Zealand is patchy.
In 2006/07, our parliament considered a 585-signature submission from Act MP Muriel Newman asking the health select committee to consider national screening.
It rejected the call and ever since bodies like the Ministry of Health and the Cancer Society have withdrawn to their “no national screening” positions.
In January this year, new National Government Minister of Health Tony Ryall told the Dominion Post that bringing down prostate cancer rates was a priority for the Government, and signalled he could consider overhauling the current guidelines.
“There is a divergence of medical opinion on screening, but from my reading of it, there is consensus that men and their GPs should be given all the information to make their own decisions.”
He said discussions were planned between his office, the Ministry of Health and the Cancer Standards Institute, but there has been no word since then.
Late last month the Ministry and the Cancer Society advised that they are currently looking at recent US developments, but the word is there is nothing there yet to warrant a change.
Media coverage in NZ is sporadic, and tends to centre on fund-raising campaigns like Movember and the Indian Ocean rowing race.
The Dominion Post published a prostate spread at the beginning of January that had doctors and the Prostate Foundation urging reconsideration of the official screening policy, but it was a time of year when many people are on holiday and probably missed it.
Only specialist magazine NZ Doctor seems to have noticed the US debate, and I’m the only one posting anything about it on the Prostate Foundation’s web forum.
We don’t seem to have active online discussion groups like those in the US. New Prostate Cancer Info-Link, for example, has dynamic group exchanges on aspects of the cancer worrying members.
It could be a double-edged sword if contributors relied on others’ non-medical observations, but that seems to be countered by the expert input from administrator Mike Scott and his medical colleagues.
It’s impossible for a doctor to cover everything that might happen following treatment and patients are wary of making constant calls, for fear of seeming a nuisance or neurotic. Putting a problem online quickly elicits comforting feedback.
The screening issue looms ubiquitously in the prostate blogosphere, but it’s hard to judge how NZers feel about it. Few people have voted in the Prostablog poll about whether we should have national screening.
Should we have it?
I’ve tried to avoid becoming a campaigner for anything, other than urging men to get the tests (both PSA and digital exam), but I am getting to a position (yet to be fully informed, I admit) on national Screening with a capital “S”.
It’s this: we should consider the American Urological Association’s latest suggestion to PSA-test all men aged around 40 to determine their baseline levels of prostate-specific antigens.
It would establish a database that could be used later to determine if a man’s PSA levels were changing at a rate beyond those associated with age.
It seems, from what I’ve read, that rate of change is a key indicator of risk.
If a man entering the riskier ages – after 50 – was to get a test and it showed clear elevation of his PSA levels compared to the baseline established in his test a decade or so before, there would be grounds for further exploration.
On present medical knowledge, this still is not a perfect solution: my version of prostate cancer, for example, didn’t show up in PSA tests at all (.77); and current diagnostic procedures (biopsy) still don’t give a total picture of whether a tumour is dangerous.
But think of the considerable advantages such a policy change would hold for the government and others who are wary of committing to Screening.
- Testing at 40 would not put any immediate strain on treatment resources (men rarely get prostate cancer before age 50),
- and by the time the first cohort entered the risk era (a decade later) medical science is bound to have a more accurate diagnostic tool (there is already talk of a simple urine test being close).
I say let’s lobby the Ministry of Health to consider this new option…and produce some very compelling reasons if they turn it down.
It looks like a solid mid-term solution to a politically treacherous dilemma.
NEXT: How prostate cancer discussion groups work.
PART 20: The loneliness of the long-distance prostate patient
Having prostate cancer could be a terribly lonely experience, if you let it.
Sounds ridiculous to say that, doesn’t it.
On any given day there are millions of words written about it on the ‘net.
There is a fully-developed medical structure for dealing with it, and each year there is a well-publicised fund-raising campaign which persuades young men to grow awful moustaches for the cause.
So what’s with the “l” word?
Well, think on this.
If I’d just had a triple by-pass heart operation and did what I did today – climbed to the top of Wellington’s Mt Victoria – people would be saying “Hey, you’re looking fit and healthy. It obviously went well…” etc.
If it was a brain tumour I’d had removed, they would be complimenting me on my restored mental acuity (if I had, in fact, regained it, or had it in the first place).
But the prostate…you can’t invite people into the loo and show them how well you’re peeing.
And there are those little question marks in people’s minds about manhood, continence and nappies. Does he have a wet patch down there? They can’t take a look, overtly. That would be like staring at a woman’s chest after she’s told you about her breast cancer operation.
Men have been the cruel butt of jokes about prostate problems for a long time, and traditionally they’ve kept discussions about it to spouses/partners, who must get thoroughly sick of the whole thing.
Friends and colleagues are wonderfully concerned and supportive, for a while, but who can blame them for moving on. Even close relatives show a reluctance to go into too much detail (why would they – they might be next?).
The prostate doesn’t exactly have the stigma of Aids or syphilis, but it isn’t something you can readily bring up at a party and hope to sustain dialogue.
It’s just too complicated. A heart transplant sounds easier…and consequently, easier to talk about.
The other problem is where to go to check on all the little hurdles and side issues that arise during recovery.
This is no indictment of the medical system, but once you’re seen to be healing (within a few days of surgery), you’re essentially on your own, unless something goes obviously wrong.
It’s one long wait, in silence. You can’t ring up the surgeon or your doctor every five minutes because you can’t remember what he/she said about such-and-such a development.
How long should there be blood in my urine? Should my boys be this swollen and this colour? And what’s incontinent as opposed to a little bit incontinent in certain circumstances? And how…you get the drift.
This is a long and probably tedious buildup to what I want to discuss next: the discussion group.
Whoa, I hear you say: why would I want to trust the advice of a bunch of fellow patients, who are probably just as unqualified as me?
Fair question. But take a look at these samples from a prostate cancer discussion group on the web and ask the question again (names changed to respect privacy).
First discussion is about PSA levels after surgery:
PHIL:Had RP in January, 2007, Gleason 7, negative margins, cancer (5% volume) contained to prostate. Had seven blood tests since the surgery, with PSA at undetectable levels. At my two year marker (March, 2009), I had a .28 PSA. It was recommended to see a radiation doctor for further treatment. I am presently in the process of gathering information to make a decision in what direction to take. I am 69 years old. I am open for any input.
ANDREW: (same day):What happened to you is the “usual”. PC more often than not, especially G-7 and up, develops microscopic mets very early, outside the Prostate. You might still have area confined disease, though. When my PSA started to “get up there”, I had a detailed biopsy before I made any moves. The results were negative…bad news…the “Horsie was out of the barn”. However, at least my urinary system was not under threat!
You had a different treatment than I did. Nevertheless, I’m not happy with the sudden rise of PSA from undetectable to .28 either. I would discuss this with my doctor. He might advise you to get one or two more PSA tests for comparison in establishing doubling time before making a move, but he probably will suggest an area biopsy somewhere down the road. If it is positive, that, in an important sense, is good news…you might qualify for salvage radiation. If the biopsy of the area is negative, you might want to use some ADT treatment for a couple of years and then come off for a while to see if you have a durable remission.
You are lucky you are 69. It is highly unlikely you will die of prostate cancer! It just looks like you will be obliged to manage your situation as you would manage any chronic condition.
ALAN: (17 days later): Check out articles by Dr Snuffy Myers and the work they are doing at the Dattoli Center in Florida on radiation therapy for high risk cancers, even after surgery.
PERCY: (same day): First thing, make sure you got and accurate PSA, same hospital or office, same lab, etc. Also, sometimes it is recommended that you have another in 3 months. Second, regardless of opinions, make sure you get a second or third to get a good look at what several experts are saying. Some teaching hospitals have a medical staffing on second opinion case where all the oncology Docs make a recommendation. I would for sure use somebody like Dr. Snuffy Myers as recommended by Greg above. He is the best. Keep us posted and up to date on what you do so we are abreast of what’s going on. Keep you in our thoughts.
TERENCE: (a month later):I am 63 and had a RP in 2002. PSA was 7.5 with Gleason of 7. After 2 years, PSA started rising. Had radiation to prostate bed and PSA returned to undetectable. In 2009, PSA was again detectable and rose to a high of 0.85 and has now leveled off at 0.70 for the last few months. Continuing to watch PSA was having it checked about every 6 weeks, but now every three months since it is staying at 0.70.
PHIL: (same day):I decided to get another opinion from a different hospital andDoctor here in the Portland, Oregon: Oregon Health, Sciences University. They recommended I get another blood test and follow up from there. I just received the results: my PSA dropped to .10. They asked me to wait another 3 months and do another blood test. Thanks for all your concerns and prayers.
ANDREW again (same day):It looks like you dodged a bullet to me! Really, those tests can be off and your approach was absolutely correct. Remember, a small amount of healthy prostate tissue sometimes remains after surgery…that tissue obviously produces PSA. If you post surgical PSA…as accurately measured, shows an actual decline, you have a very good chance of being in the clear! Thanks for keeping us updated!
SITE ADMINISTRATOR: (same day):Hey Phil…That’s good news. Keep the microscope focused on the numbers for a while, just in case, but there’s a great lesson here for everyone – don’t over-react to small changes in the PSA level. It happens.
Second discussion is about the immediate after-effects of surgery:
BILL:Well, the surgery went off w/o a hitch Monday afternoon. Returned home last night. Couldn’t believe my eyes when I stepped on the scale, + 10 lbs! Some minor swelling and bloating, but feeling fine. Even the cath (catheter) isn’t as bad as I thought it would be :) Dr says all went well and was able to save both nerves. However….my palpable “camel hump” concerned him. Will meet 10 days hopefully for cath removal and keep our fingers crossed for a promising path report. Till then…
JED: Great job Bill. Now that is behind you and the healing begins.
BRIAN: I’m sure the swelling will disappear, as mine did over a couple of weeks. One advantage was I couldn’t look down and see my scar. I’ve found I’ve actually lost about 4 kilograms in the long run (op was a month ago).
BILL: HELP!! I just noticed that my penis and scrotum are now turning black and blue. Is this normal post op? Feeling fine otherwise. Don’t recall reading or hearing about this. Thanks…
JOHN: Obviously time to make a telephone call to your urologist rather than rely on “what I did” from other men.
BOB: Go to the Dr ASAP.
BRIAN: Good advice. Mine swelled up, but there was no black and blue bruising.
JEFF: Bill…ask your Dr. After I had mine it shocked me to see my scrotum the size of a small grapefruit!! HAHA…it sounds funny now. I did notice some black and blue there also. Good idea to check it out though.
TERRY: I can relate to the grapefruit analogy. I also recall discoloration, but don’t know that I would call it black & blue. But I would suspect that it’s in the realm of normal, considering the trauma inflicted.
JEFF: You’re right, Terry…it wasn’t exactly black and blue, but it was discolored. The size shocked me, they didn’t warn me, so I called my Dr. It was from all the trauma.
Four days later:
ALBERT: So, Bill, how are you doing now? Please tell us. My surgery is scheduled [next month].
BILL: Thanks for asking, Albert. Everything seems ok…for now. Meeting w/dr [soon] for path report and (hopefully) cath removal :) My wife is nervous and struggles sometimes. She’s just scared and it seems to get the best of her sometimes. I just try to comfort her and tell her it is what it is. One step (report) at a time. Sure, I’ll be pleasantly surprised if the path report is promising. But the reality of this program is it’s something we will have to manage for the rest of my years. That’s just the way it is and I’ve accepted it. Will update later this week. Sounds like you have a bit of a wait until your surgery. I didn’t catch much of your info other than it appears you’re on top of things. Sounds like we may have similar situations…50-something, 2nd marriage? Any way…good luck & enjoy yourself. It really hasn’t been too bad.
The benefits of this kind of exchange are obvious: lonely patients getting into contact with those who have experienced something similar.
The dangers are obvious, as well: unqualified people passing on their inexpert advice to others. But in the first discussion, note the affirming interpretation from the site administrator, who in this case has considerable expertise available to him.
In the second discussion, see how quickly contributors urged Bill to go and see his doctor. Sometimes, that’s all that’s needed for someone to realise they’re not being neurotic.
The other plus in this kind of forum is the warmth that comes through from fellow patients. Medical practitioners can exude the same compassion, of course, but are necessarily constrained by their professional status.
Nothing quite like reading someone else’s account of something that also happened to you. The sense of affirmation (and relief) is palpable.
NEXT: End of the golden weather.
PART 21: End of the golden weather (not what you think)
The headline for this – the penultimate chapter of my prostate story – isn’t what it seems.
It’s not a goodbye, nor a resignation to impending death, nor a signal I’m giving in to the vicissitudes of age.
It’s a metaphor, of course, drawn from a famous NZ play by that name ( The End of the Golden Weather by Bruce Mason ) which spoke to my boyhood of “…the eternal optimism of the child and the harsh certainty of age…”
To quote one tribute to Mason’s 1959 work:
“Using the setting of [Auckland’s] Takapuna Beach in the 1930s, the play is about growing up in New Zealand during the Depression, and the happiness of a childhood is set against a backdrop of social unrest. Golden Weather tells the story of the loss of innocence and of human fallibility…”
The end of my golden weather refers also to the “official” finish of my recovery from the surgery that took out the prostate cancer, a two-month idyll during which I’ve researched and written about prostate cancer in this forum, which began as a personal blog and has grown to a website with a following around the world.
(That’s one reason, incidentally, why I have explained “end of the golden weather” – now two of five visitors to this site are from the US. The proportion of Kiwi readers is about one in three).
In this case, “end of the golden weather” also has a literal meaning, since my time at home has been blessed with a remarkable (for Wellington) patch of fine, still weather, an “Indian summer“.
In the last few days, winter has roared in from the Antarctic, bringing snow to the South Island and to hills around Wellington.
Rain hits the windows on the southerly side of the house as I write this, and I know the days of teeshirts and sunhats are over for a while.
Tomorrow, I return to work. Truly, the end of the golden weather, but in fact something well overdue if I am to feel fully restored.
Which is what I want to write about: how do I feel about what’s happened (that classically banal and inappropriate journalistic question)?
Perhaps I should begin with what I don’t feel.
I don’t feel old. At 62, the body and mind are in the kind of shape my parents’ generation, the Depression and war-shaped cohort, associated with their 40s. My mindset accords with that silly epithet, “60 is the new 40”.
I am getting old, of course, but cancer has had no obvious role in that gradual process.
It didn’t turn my beard white, steal the hair from the top of my head, slow up my legs in social soccer games, nor account for loss of memory for people’s names after we’ve just been introduced, nor the keeping to speed limits, and restricting of booze intake to a Heinie a day, and the working day hours to no more than a dozen.
All those things have been creeping up since I was 30.
I don’t feel debilitated. I’m back to the fitness I enjoyed prior to the operation in March, easily able to walk briskly over my personal training challenge, Wellington’s Mt Victoria.
These pictures show the 151 steps I climb on the route to the top, and a view from that top after my first post-surgery ascent, some six weeks after surgery:
As I rather over-excitedly reported in an earlier chapter, my urinal turn-around time is reduced to that of a youngster.
I have no major problems with incontinence – just a little drip of a leak sometimes when I’m tired and forget to brace the pelvic muscle when I laugh or cough.
And the big one – suffice to say, that’s not a problem either, without the use of Cialis or the dreaded injections. Bang goes my excuse to browse in the adult shops for a cheap pump.
I don’t feel apprehensive. I’ve got cancer, but we got it early, it would seem, and it was slow-growing – Gleason grade 6 (I’m now thinking it was there for years before my GP, bless him, encountered it with his digit).
It hadn’t migrated out of the prostate, and prior to the operation my PSA was a mere .77.
I’m a little less sanguine about the “let’s cut the bastard out and be done with it” mindset I had early on, because research tells me there’s never any guarantee that something microscopic didn’t escape into my system during the op, or even during the biopsy. Highly unlikely…but possible.
I expect when my PSA is tested in August I’ll show the required nil level, but I’ve also read data which shows it might rise again after a couple of years. I need to show nil PSA for a decade before I can possible say I’m cured.
But something has changed. Ever so subtlely.
It can only be described as an odd sense of betrayal. My body – until now more or less organically sound – has finally let me down in a most shocking way.
Okay, I’ve had marginally elevated cholesterol since 1991, but there is still medical disagreement about what that actually means. And I take a light dosage of blood pressure medication for something that runs in the family.
Neither of these has felt anything other than a mild indication of getting through the years towards maturity.
But cancer! That’s systems failure. That’s involved the first major invasion of my body, leaving a scar (physical and mental), and thoughts – which will no doubt recede – of organic deterioration, of a hurrying of the first steps towards the grave.
It does, doesn’t it, but actually it’s not something I’m dwelling on in a neurotic way. It emerges merely as one of the more philosophical after-effects of a mortal event, a reminder that, yes, there is death at the end of the journey, and there’s no way to dodge it.
It doesn’t affect my optimistic view of life in the slightest.
I come from a line of long-livers. My great grand-father died in his baker’s shop in London at the age of 99. My grandfather lived to 84, and my father convinced himself he would go at the same age, so did. On my mother’s side (she lived to 80), there was grandma lasting till 94 and grandfather going to 86. We don’t pop off early in my family.
Age expectation is a tricky calculation, incidentally. One of the interesting things in Michael Dattoli’s new prostate cancer book (reviewed recently on this blogsite) is a reminder that average longevity calculated at birth (about 78 for male Kiwis) is way shorter than that enjoyed by someone at 60 and beyond.
This chart from the Dattoli book shows what I mean:
This is important in the debate about population-based prostate screening. One of the arguments against it (and against surgical treatment after about 75) is the thesis that because many tumours are slow-growing, something else will getya before the prostate.
As age expectation rises significantly once you’ve reached 60 (compared with what you started out with, when accidents and other factors are probably much more influential), so presumably does the point at which “watchful waiting” should apply.
My life expectation in terms of surviving prostate cancer is also being extended as we speak by the massive effort by scientists and doctors – in the US especially – to achieve breakthroughs in testing, diagnosis and treatment.
Any time soon they’re going to find a quick, non-invasive method of helping the medics know how bad the cancer is and how (or if) it should be treated.
This is undoubtedly an effect of the great surge into old age of my generation, the baby boomers, with our more positive attitude to aging and our demands (and wherewithal to pay) for better medical options.
So. How am I feeling?
Bloody good, bloody lucky, bloody optimistic.
Even so, I will be taking a few precautions.
The number of red meat meals will be dropped from four or five a week to one or two, the already fat-free diet will be applied even more rigorously, the brisk walks will be taken even more regularly, stress at work will be avoided (hah!), sunsets and scenery will be noted more diligently, the regular evening hit of red wine will be replaced with pomegranate juice (which looks exactly the same in a wine glass and, amazingly, tastes like a slightly sweet version of a Central Otago pinot noir)…but the single daily can of that nectar of life, the Heineken (no, they’re not paying me a cent), will continue.
This weekend we had a pleasant visit from my journalist colleague, Barry Young, who also happens to be president of the NZ Prostate Cancer Foundation.
Barry is 10 years free of prostate cancer after his prostatectomy, his PSA is nil, he can enjoy a good glass or three of red wine, and he tucked into seconds of lamb shanks (grown on the open fields of the Canterbury Plains, no doubt).
I’d be tempted to say us journos have an extra gene that bodes well when we get prostate cancer, but I know that’s not true (witness the death of the legendary Frank Haden a couple of years ago).
But our sense of outrage might help. It comes from our journalism-driven suspicion that there are people in positions of medical power who – with their dogmatic opposition to the promotion of prostate testing – are deciding the fate of a lot of men in this country.
This comment in no way applies to the medics who have treated me – surgeon Rodney Studd and the team at Wellington Hospital, Bob Hale at the urology department, the nurse-manager of the rehab clinic, and to GP Rob McIlroy.
Thanks to them, I feel confident of a long life. I don’t care about speaking too soon – I’m just not suspicious about tempting fate.
PART 22: Why I now catch the bus
I now catch the bus.
So! A lot of people do, every day, no big deal. Wellington is a commuter city, with an excellent public transport system (although the trains aren’t so good, I hear).
So what’s with the bus? And what’s this got to do with prostate cancer?
Bear with me. First, a little background on my family: the Tuckers are car people.
My father boasted he owned 59 cars in his life (not all at once, thank goodness). He had every post-War Citroen up to the DS19, an exotic spaceship that turned heads when he got the first one in our town in 1958.
I suspect he compensated for short physical stature with his cars. The sight of him in his 1965 Chev Impala! It was a Yank tank with an underpowered V8, but oh the size of the thing.
My brother drives a Range Rover and a BMW, and happily pays $700 for one new tyre (well, not quite so ecstatically while there’s a recession).
My life’s ambition at 19 was to own an MG sports car. I had it by 20, fire engine red with white-wall tyres.
But after a year I couldn’t tell if the young women who rode in it were loving the vehicle or me. The car, I suspect. An astute female friend called it my “big red penis” car. If only…
Life did not take on new meaning because of the MG, so over time I downgraded. I discovered that women, oddly, aren’t that impressed by cars.
Now it’s a Nissan Micra, whose only downside is causing offence to men in grown-up SUVs if I pass them on the motorway or drive in the fast lane.
Even so, we male Tuckers don’t bus. Ever. It’s not, well, manly.
I trammed to school as a little kid, but biked as soon as my legs could reach the pedals of a two-wheeler. It had a speedo, saddlebags and a whippy aerial (no wonder I was bullied).
I had my driver’s licence at 15, to drive mum’s humiliating Morris Minor, admittedly, but then it was quickly on to a hot Mini with fat feet, twin carbs and overhead sliding sumps.
After that, never the bus. Buses were for other people, ones who make up the numbers. There’s no freedom in a bus. Standing on the side of the street in the rain, looking resentfully at single-occupant cars going to work. What is it with that, the resentment?
So, now, the bus.
Where have I been all these years?
On Mars, perhaps, as was suggested none-too-politely by a grumpy bus driver when I first tried a bus and didn’t grasp that there are sections and zones and you have to know where you’re going, and putting money in the dish thingie and walking off to find a seat is not completing the full transaction.
“So, where are you going?” this first occasion elicited from the driver.
Me: “Um, doesn’t this bus go into town?”
“Yes, and then on as far as Wilton. How far are you going? How many sections?”
“Sections…well, town, of course. Why?”
“I have to issue a ticket.”
“I didn’t know that.”
“Which planet are you from – Mars?”
“I don’t appreciate the sarcasm.”
“Huh. You should try doing this job. You wouldn’t last a day. We’re short of drivers, about 30 short. Why don’t you apply, see how long you last.” And more.
He then drove like a maniac around our precipitous and narrow streets, just missing a couple of cars, muttering about how the country had gone to the dogs.
This was another reason why I should never bus, I decided. We were, after all, just following city council advice to leave cars at home because half the central city was closed off for a street carnival and a Harley Davidson rally.
But, yes, again.
And I’ve got to tell you – I was wrong, wrong, wrong about the bus.
The bus, I’ve discovered late in life, is a plush, comfortable, insulated, calm place where you can sit back, catch up on the day’s missed phone messages and texts, read, daydream, look at people, watch the view, think about nothing.
And avoid stress.
The bus is a far less stressful mode of getting home from work in the 5 o’clock rush.
No more barely contained road rage, exasperation at the stupidly of every other driver.
Or blasting wayward cyclists and pedestrians with the Italian air horn I was forced to install in the toy car because of the SUV bullies.
Or dodging protruding cars badly parked in narrow streets.
Or death-defying lane changes enforced by traffic engineers whose idea of traffic light design is as chaotic as an English roundabout.
And you can listen to the bus driver’s radio communications with base as other drivers describe their crashes and coming forward as witnesses for one another because “that guy cut right in front of you, Dennis. Saw it plain as day.”
And you’re dropped off right at your door. Like a massive taxi.
And if you buy one of the electronic tickets (mysteriously called a Snapper Card), you avoid the interrogation that seems to come with a cash transaction.
The machine growls at you (“don’t forget to log off”), but after a couple of trips you know what it’s going to say, and that it will say this to everybody. Nothing personal.
There are a few downsides, admittedly.
Buses don’t keep to the timetable. Or, presumably in an effort to do just that, they pull up a street short of your stop and the driver announces that he will be resting there for six minutes.
The bus you’re after will often be pulling away from the stop while you watch from the other side of the street, trapped by a pedestrian light that’s red so your bus can leave without you.
The numbers are hard to read on some buses. The one I catch is one of them.
While every other route has a bus with a giant illuminated number that can be read a kilometre away, my Number 14 is indiscernible until its upon you. Which is a problem when it pulls up at the far end of a big line of other buses at the city bus stop where I catch it.
And there is a kind of subtle community living in buses. They are people in the know. They know the bus driver and address him/her by first name. They spread themselves out on a double seat to ensure nobody else can sit beside them.
They nod to their fellow community members, talk little and in code, look vacant but grim, and resent a newbie who is, so far, as open to this new life experience as a first day student on a gnome-painting course. I will learn from them, I know.
But to the point: this is all part of my new, post-cancer surgery existence, an adjusted life that involves less stress (no more road rage), more vegetables and fruit (no more ham sandwiches from Mr Bun eaten over the keyboard), less red meat (more hormone-crammed chicken and mercury-laden fish), more exercise.
Going back to work has, of course, been stressful (no more cat naps in the afternoon), but things have started to settle back into a manageable routine.
It helps that in order to catch a bus before they’re crammed in the rush hour, I try to leave work just before 5pm, as opposed to the old 6pm.
I’m also being cosseted at home. Lin has lost her government job, but is enjoying some time off, which means I’m temporarily off the chef roster (and the washing, and toilet cleaning roster, as well).
I’ve also learned not to rush rehab. It’s taken all of the nearly three months since the prostatectomy to rid the lower abdomen of sensitivity to tighter clothing, to fully adopt the Billy Connelly advice “if you get a chance to have a pee, take it”, and to let nature take its course when it comes to the intimate stuff.
Soreness after that was also a problem for a while. The medics urge almost instant rehab, within three weeks of the op, but although I’m sure that’s based on sound research, it seems to me that rushing to try out equipment that’s had a helluva rough ride can be less than productive.
Meantime, it’s life in the bus lane for me.
I’ll never again swear at a bus stopped with its rear end sticking out into the traffic and holding up us, sorry you, motorists.
PART 23: Winning the trifecta
I’m not a racing man.
I was put off by my family, who lived horse-racing. As kids, we were dragged to racecourses.
When I started as a cadet reporter 43 years ago this week, I made the mistake of saying I hated racing – so the chief reporter quite rightly assigned me to help the racing editor on race days. I would obviously not be distracted.
So when the urologist said to me this week I’d got “the trifecta”, I knew what he meant. I’d scored three wins on the same bet:
- The tumour removed during surgery last March was low-risk.
- There was nothing at the margins of the gland.
- And now, nearly five months later, my PSA is undetectable.
It was a nice analogy, and the winnings are bigger than any racehorse bet.
It means I’m in good shape, at least for the next couple of years.
From my reading up on all this, it seems two years from now will be another hurdle to jump, because that’s commonly when men in my position can get biochemical recurrence, with the PSA doing a doubling act.
My followup appointment with the urologist couldn’t have gone more wrong (aside from the one big right).
For a start, there was bit of a lead-up that proved quite unpleasant.
I picked at a bit of dry skin on my knee and managed to infect myself with ringworm (presumably from the cat).
I made the mistake of covering it up (as my mother always advised) with water-tight sticking plasters.
Have you ever tried to get those off (as I needed to do each day to apply anti-fungal ointment)?
Each day, twice a day, I’d tear holes in my leg removing plasters that would have held a space shuttle together – and spread the infection.
It ended up at the top of both inner thighs, and by the time I went to the doc for a more powerful ointment, the proximity to my boys had unfortunate consequences: they proved allergic to the ointment.
My testes swelled to twice their normal size and the old fellah looked like a bruised plum.
In alarm, I did the one-handed cellphone camera trick, captured a couple of dramatic closeups and emailed them to the urologist.
Hmm, looks like an allergic reaction, he mailed back.
He was right. By the time the treatment was completed, the gens returned to normal and my visions of carrying them round in a wheelbarrow had receded.
By the day of the followup appointment, all seemed well.
How wrong can you be!
For a start, we went to his rooms, instead of Wellington Hospital’s urology clinic (if I’d just bothered to read the appointment reminder).
I arrived at the new hospital block to find no sign of any signs in the main foyer, in the lifts or on the appropriate floor (when I found it) that mentioned the words “urology clinic”.
I rushed in late, saw the urologist poring over a big stack of files, sidled up breathlessly, and apologised for holding him up (I was 10 minutes late).
He was suitably gracious. And I was soon appalled – because I found a huge waiting room stacked to the ceiling with other patients, more than a dozen of them, all waiting to see the same man.
Right. The public health system. Of course.
I plonked down in one of a semi-circle of incredibly luxurious, leather, padded (and seemingly electrified) lazy-boy chairs, each assigned a bold number on the wall behind, announcing its status as “Chair 1″, “Chair 2″…the logic was overpowering.
We never got to see what the electrics did because they didn’t seem to be plugged in.
But such chairs! Perhaps a gift from a kind benefactor who had, before us, endured long hours in hard, straight-backed seats in the same waiting room.
A small irony arose when I asked a man sitting beside me in a surviving hard, straight-backed chair if he would mind moving so Lin could sit next to me, and he declared that he couldn’t move because he needed a hard, straight-backed chair.
Looking around, I saw I was the youngest patient by about 20 years, and the least patient. The others sat impassively, quietly, with dignity, while I built up a head of steam thinking about my need to get back to work.
Finally, I got up in a minor fit of pique and declared grandly to the receptionist (who said there were still four ahead of me) that I would be leaving.
“Can we book another appointment?”
“No thanks – I’ll take my chances,” said I with ridiculous pomp.
On the way out, however, the urologist emerged from a session, saw me leaving in a huff, and ushered me in: “You’ve got the trifecta, Jim.” Yeah, Rod, it’s all good. Thanks for doing such a great job.”
We discussed the idea of doing a NZ book on the disease. He grabbed a couple of overseas ones for me to look at, and we’re due to meet up some time to discuss the project.
And, well, that’s it for now.
Except to observe that it’s amazing how quickly the effects of your brush with death wear off.
I declared I would work shorter hours, brook less stress, have a proper lunch hour, give up all alcohol.
The only real change I’ve made in my life is to have sushi for lunch instead of ham sandwiches.
I eat the sushi over the keyboard (lot messier with chopsticks), work longer hours than ever (this blog takes two to three hours every night), and still have a Heinie and a glass of Central Otago pinot noir each evening (the last is good for us prostate patients, of course).
Life goes on as before. But, then, that’s good isn’t it…
PART 24: Cliche is true – cancer makes you re-evaluate
April 13, 2010
A year ago, I lay in bed at home in the mornings and stared out the window at blue skies, wishing I could be under them.
I’m looking through a different sort of bedroom window as I write this – the window of the campervan, and we’re parked beside Orewa Beach, north of Auckland.
Pohutukawa boughs frame a view beyond green and straw-coloured kikuyu and marram grass, out to the end of Whangaparaoa Peninsular, Tiritiri Matangi Island and the hill tips of Great Barrier Island popping up into the horizon of the Hauraki Gulf.
It’s a year post-prostatectomy.
We’re on holiday for a few weeks, and this April there is the same Indian summer weather, but no catheter, no bright new scar slashing the lower abdomen, no need to hold back from coughing, laughing or leaping off the bed to go for a walk.
The only “slashing” these days is at the urinal, when the flow never fails to mimic that of mythical 18-year-olds.
The year has passed with many highlights:
- The birth of Oliver Thomas Tucker, first grandchild (thank you Megan and Kirk).
- Two PSA undetectables.
- A journalism graduation dinner I was actually able to attend last month (rather than imagine from the haze of anaesthetic recovery, as happened last year).
- A return to fitness, following walks and a change of diet to reduce red meat.
- A couple of months’ membership of the Prostate Cancer Foundation of NZ.
- Six months of blogging about prostate cancer, then “retirement” apart from occasional blogs. The site had 70,000 hits in the year, with about 20,000 people reading My PC Adventure.
- Many kind messages from readers, who seem to appreciate the candour of my account.
- Selling our house and buying a campervan, and so far several tours to beautiful parts of NZ. We may never own another property, having fallen in love with being on the road.
- Most important – the support of friends, colleagues and family.
I’m now more aware than ever how widespread is the prostate cancer “epidemic”, and without compunction will ask every 40-plus male I meet whether he gets himself tested.
An early stop on this current trip was at Palmerston North (the place John Cleese said made him suicidal) to visit my mate Lance, who is halfway through external beam radiation treatment for low grade prostate cancer. His prognosis is good.
I have one disappointment – lack of news about the NZ Parliament Health Select Committee inquiry into prostate cancer detection. It started with a hiss and a roar in September, but nothing has been heard so far this year.
My state of mind is rarely troubled by thoughts of whether or not I am “cured” of prostate cancer. It just doesn’t figure.
However, now and again there are reminders. An acquaintance who had his prostatectomy a decade ago told me recently he was suddenly suffering peeing problems, apparently caused by scar tissue resulting from radiation he had all those years ago.
And just yesterday I had to sit down for a few minutes after feeling a bit dizzy. But that may have been an over-zealous intake of resveratrol (erm, pinot noir) the night before, and absolutely nothing to do with anything else. But you do wonder for a moment.
For those who are curious but too polite to ask, “functionality” is fine. Erection firmness is as good as ever, although the lost inch is still a little disconcerting.
Libido is normal – ie, it disappears with work stress and goes berserk during holidays.
Orgasms are just as enjoyable and intense as before, and a lot less messy, of course. No more careless maps of Asia on the bottom sheet.
The only bad in my life is stress from work. I continue the task of rebuilding Whitireia Journalism School into a half-decent hall of learning, but at times the workload is immense.
In February and March this year I found myself toiling seven days a week every week just to meet the demands of graduating 28 diploma students.
As I enter the last quarter of my life, I’m thinking seriously about how to avoid doing that for too much longer.
That’s one of the upsides of getting cancer: you take a hard look at your lifestyle.
And the view. There’s a couple of kite surfers out there on the sea. Our spell of 15 straight days without rain is about to end, by the look of the gathering nimbus and the feel of the breeze.
Bugger cancer – I’m off for a walk. See you later.
PART 25: What I now know – or think I know – about prostate cancer
I was alarmed recently to get a call from a mate who has just been diagnosed with prostate cancer.
Alarmed on two counts:
- Here was another friend diagnosed with the disease.
- His doctor told him to get in touch with me – because I’m an expert!
I hope very much the doctor prefaced the “expert”: with the word “lay”, meaning I’m a non-medical authority.
But I’m not keen on that label, either. I would never give medical advice, and I’m wary about giving any other kind, other than to point people in the direction of information sources I have found to be useful.
What people are after, I think, are:
- Some comforting words from someone who’s been through treatment, a word of hope that their first thoughts about imminent death are likely to be misplaced (even though they will probably have heard truly expert advice to that effect from their medics).
- Some translation of the medical jargon they have just been subjected to. Some doctors seem better than others at speaking in plain English, and all of them are justifiably wary about making predictions. Some may even unconsciously favour the kind of treatment they offer, to the neglect of other options.
- Some insight into what they face. Men are suddenly very keen to know what treatment to choose, what happens with each kind, and what it will do to them, especially in terms of potential incontinence and impotence. And (if they’ve never had one) what it’s like to have a catheter.
So, am I in a position to help? What do I actually know about prostate cancer? Is my “little knowledge” a dangerous thing?
To the first question, yes, I can help a little, even if it’s to calm someone down and provide solid evidence that people do indeed live through the experience of prostate cancer.
But then we run into the big problem: every man’s case seems different. No two patients will tell you the same story, which is hardly surprising given the mathematical possibilities.
Consider the variables:
- Prostate cancer tumours vary in aggression on a scale of 6 to 10 (Gleason score);
- They vary in size and degree of invasion of the gland;
- They may be confined by the gland, or have escaped to affect nearby tissue;
- They may have spread to other parts of the body;
- They may be detected by rising PSA – or not;
- They may be felt by a digital examination – or not;
- Prostate cancer may run in the family;
- The patient may choose any one of a number of treatment options – open surgery, laparoscopic surgery, robotic surgery; external beam radiation; brachytherapy (there’s more than one kind); hormone therapy; chemotherapy; immunotherapy, cryotherapy, natural remedies, active surveillance, etc, or a combination of two or more.
Do the maths: there’s any number of possible scenarios and outcomes.
Add to that the constant development and refinement of new drugs and treatments, and the option of taking part in drug and treatment trials, and nobody can say with any certainty just how any one newly diagnosed patient will fare.
All I can claim to offer in the way of help is to urge people to find out more for themselves so they can ask their medical practitioner the right questions.
As has been told on this blog (see John and Mary’s story), nobody has to take the bad news and the first opinion(s) and accept their fate without question.
Mary is an average Kiwi woman with no medical training who refused to accept everything the doctors said about her partner’s options. She researched so thoroughly she was able to query what she was being told in the same technical language as the doctors.
Most people could do that, but it’s not easy. When first diagnosed, I attempted to find out more on the internet (not that I didn’t feel comfortable with the urologist’s views) and it seemed overwhelming.
It wasn’t until after my surgery – when I had a couple of months with nothing do but get better – that I researched the ‘net properly, and identified the very few websites worth looking at.
Most of the prostate cancer stuff on the ‘net is either
- incomprehensibly technical;
- incomprehensibly sensationalist (read: most news media);
- written by public relations hacks paid by drug companies,
- the ranting of idealogues and polemicists.
- or porn-related (prostate milking, whatever that is, seems a big fetish with some).
The aim of this blog has been to mine technical sites (like Uro Today) which report the latest news and research and then try to translate the incomprehensible into the digestible.
It’s noticeable that whatever else doctors and researchers learn about their trade, little of it encompasses the ability to communicate.
I’m often helped in this task by the writing of Mike Scott, the non-doctor webmaster of The New Prostate Cancer Infolink, whose prose is fluent and clear. He runs the best site on prostate cancer in the world.
So, what do I know (or think I know)?
- All men above 50 should get themselves tested for prostate cancer. After the age of 60, it should be an annual event.
- It must involve both the PSA blood test and the digital exam. Some people (like me) don’t register PSA change in the event of cancer.
- A worrying number of men pretend prostate cancer (or any other kind of disease) doesn’t exist and never go to the doctor for a checkup.
- If you have been, and the news is bad, get more than one medical opinion of your diagnosis, preferably including one from a cancer specialist (oncologist). Urologists tend to favour surgery, radiologists radiotherapy, etc.
- There’s rarely any reason to panic, except perhaps if the diagnosis is late in the piece and the cancer has spread. But even then, it depends…
- As many as half of all men will get prostate cancer, but most won’t ever know because they’ll die of old age or something else before it shows up.
- Up to 3000 Kiwi men a year are diagnosed, and about 600 die each year, figures that have not changed much since the mid-90s when PSA testing came along (and there was a sudden rise in diagnoses at younger ages).
- So your chances of dying, statistically speaking only, are about one in five of those diagnosed, who in turn represent about 15% of the male population. So that’s about 3% of all men (but don’t rely on my maths – do some research of your own on the Ministry of Health website).
- Maori and Pacific Island men have much worse stats, which suggests they ought to be offered mass-population screening (like breast and cervical cancer) by the Government.
- Few, if any, governments in the world offer mass-population screening, saying there is too big a risk of over-diagnosis and over-treatment, that side effects of treatment are unacceptable if someone didn’t need treatment in the first place, and that PSA testing is unreliable.
- A lot of research is going into trying to establish whether PSA testing is effective, but so far the results are confused.
- A lot of research and money are going into new tests, drugs and treatments, especially in the US.
- The holy grail for researchers is a test that will tell if a prostate tumour is dangerous and needs treatment, or if (as in most cases) it’s so slow-growing (indolent) it can be ignored.
- The four main treatment options and their variations – surgery, external radiation, brachytherapy, drugs (hormone and/or chemo) – are highly effective to some degree or other, but all have their down-sides, such as urinary problems, impotence, bowel problems, depression, risk of a recurrence of the disease, etc.
- I know a lot about:
- open surgery radical prostatectomy (because that’s what I had), but only so far as it affected me;
- having a catheter. No problem in my case because the urology nurse who removed it knew what he was doing. And I’ve never had to self-catheterise myself, a tricky procedure, judging from the accounts some men give.
- the importance of getting fit before and after the operation;
- the need to change diet – to cut down on red meat, and increase intake of fine Central Otago pinot noir wines;
- the importance of a supportive partner, friends and family;
- not rushing back to work;
- the need to avoid stress;
- changing your views on life (buy a campervan!);
- not rushing into resuming sex.
The danger of a little knowledge
Prostate cancer has become one of the biggest medical industries in the world, no surprise given its high incidence (it’s the most reported cancer in most countries).
My “little” knowledge is indeed that.
But one advantage I have is an ability to translate the lexicon of the prostate industry into that of every man.
It’s what journalists can do, especially aging ones who get the idea into their heads that here, at last, is some good they can do.
PART 26: A post script – more than three years out
June 26, 2013
I haven’t been on this blog for a while, so apologies to anyone who has commented or asked questions.
I am teaching blogging to my journalism students today and showed them Prostablog – and discovered a large number of pending comments. They are mostly now posted (apart from the spam ones).
The reason I have stayed away, I guess, is I consider myself prostate cancer-free these days. My PSA doesn’t register, and my checks are down to once a year.
It is three and a half years since the surgery to remove my prostate and while I still have to get to the five year post, then a decade, I don’t think much about it.
Please take that as a positive – it could be seen as selfish on my part not to continue blogging. However, I just ran out of stuff to say, and monitoring the web for prostate cancer news was taking several hours a day, which I now need to spend on doing other stuff.
I’m 66 and have just retired from journalism teaching. I will be returning to my hometown of New Plymouth in Taranaki to finish a book and maybe write some others. I will be working with my brother, photographer Rob Tucker, who has a few projects for me to contribute some writing to.
Prostate cancer changed my life in one important way: my wife and I enjoy camping, so decided to abandon home ownership in favour of a big caravan, which we tow around the country.
Although it might seem a crazy option in mid-winter, in fact we are finding it a great lifestyle at any time of year. Even the cat has got used to moving around.
So there we are. I feel lucky. Here’s all the best to all of you just starting the journey I began on Christmas Eve, 2008.
If you want to discuss anything about prostate cancer with me, please use my gmail address: firstname.lastname@example.org
But remember, I’m not following the topic closely any more, so may not be able to help. And my advice is always cautious – I’m not a doctor, and I believe every man’s experience is different and personal.
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