JIM TUCKER: why I wrote this

LATEST: February 13, 2010

It’s nearly a year since I shed that damned tricky wee organ, the prostate…and perhaps, inevitably, I’m back at this blog.

Not filing daily, as I did for six months, but adding something now and again as prostate information comes up.

But there’s something else that’s brought me back – you guys.

You’ve written some wonderfully encouraging feedback, evidence perhaps that my original motivation for blogging after my surgery in late March, 2009, was appropriate.

Prior to the operation, I could make no sense of the web’s technically complex, at times hysterical, sometimes misleading morass of prostate “information”.

Take a look at the latest message to come in today (SEE BELOW).

It’s from an Auckland man who will have a robotically guided prostatectomy next week, and he writes that my account has given him some comfort.

Can’t ask for better than that.

Good luck, John.

Have two more bits of good news (from my point of view).

1. My second PSA test result came in this week and the antigens are still undetectable.
2. Son Kirk and wife Megan have just brought our first grandchild into the world – “Sparky” Oliver Thomas Tucker (right).

Meantime, catch up with a bit of our “new” post-prostate lifestyle, Lin’s account of our campervan travels around the South Island of NZ earlier this year.

Titled  Thecatcametoo (because he did), it recounts what you can do about seeing your own country if you set your mind to it.  CLICK HERE>

Hello Jim & Lin,
A HUGE thank you for posting all this personal information. My wife Vickie read an article in the Listener with a link to your wonderful site.
I enjoyed your style of writing in an informative and humorous manner, and with your vivid description, I was actually able to visualise events as if I was there, sort of a 3D movie.
You are a lucky man, Jim, to have such a supporting and loving wife, as am I.
I am having surgery next Wednesday, so I found your story in the nick of time. It has calmed my nerves somewhat,and answered a lot of questions for me.
Looking forward to the catheter…NOT.
I will be having a “robotic-assisted radical prostatectomy” in Ascot Hospital in Auckland. Costs big money. Luckily, I have insurance, and have been paying premiums for 20 or so years. Almost quit several times.
I will post again after surgery.
Regards

John Montgomerie

November 21, 2009

I’m now over prostate cancer.

I’m not claiming to be cured. It’s just that spending three or more hours day monitoring, translating and posting on the prostate cancer web discourse is no longer viable.

The blog is parked for now, although this does not seem to have made any difference to the interest shown: hits still average 300 a day (nearly 400 some days), even though I haven’t posted anything much for a fortnight.

This suggests the site has a life of its own, which is kind of weird, but saves me from being a slave to the PC.

One word may explain the continued traffic – “CATHETER”. When I look at tag terms (key words) that attract people to Prostablog, “catheter” averages about 100 a day, with whatever is next ranking in single figures.

…The most read single post is the chapter of My Prostate Adventure entitled “All Quiet in the Western Ward”, which recounts my first brush with a catheter.

My Prostate Adventure (all 30,000 words of it) has now been read by about 15,000 people, with up to 500 still viewing it each week. Makes me wonder if I should turn it into a book – but what would be the point.

The most extraordinary feedback I’ve had came from my old journalist mate, Warwick Roger, who founded Metro magazine in the 80s. He said My PC Adventure is a courageous read and suggested I send it to The New Yorker.

Such a flattering thought coming from a master writer like Warwick. But I don’t think they’d take something so long, surely.

My health is good, although I experienced some after-pee dribbling for a week or so last month when we were in the middle of moving house. I guess the stress caused that. It’s gone, now.

Erectile function is normal, but sex requires care. Insufficiuent lubrication leaves the old boy extremely red under the knob. There’s no pain, but that may be because nerve recovery is not quite complete.

Orgasms are intense and just as enjoyable as before (and there’s no mess).

Slightly disconcerting is a noticeable loss of length and bulk when the organ is flaccid. At rest, he just pokes his head out, and feels flabby.

In anger, bulk certainly returns and hardness is about 95% (certainly enough to do the business), but there’s no more stretching up to the belly button. Ah well…

My reading tells me this is the result of the urethra being pulled tighter during reconnection to the bottom of the bladder after the prostate is removed, and length loss happens to more than two thirds of surgery patients.

Like those in a recent survey, I really don’t care (and neither does the other party concerned). Just functioning more or less normally is gift enough.

I have my next PSA test in February. It was undetectable last time, and I don’t expect that to change in the first two years.

Meantime, life is for living. Work, as usual, but also some serious campervan touring around this beautiful country.

I’ll see it through new eyes.

Watch out for my travel blog.

August 25 update:

Just been to see the urologist for my first followup appointment since the surgery to remove my prostate in March.

It’s all good – the trifecta, he called it. Check out My Prostate Adventure, Part 23, for details.

Meantime, Prostablog is approaching its 1000th post (since April 1), its 15,000th hit – and has been invited to join a medical news aggregation website associated with the Harvard Medical School and others, called Medpedia News & Analysis.

August 11 update:

A big, big day – my first blood test since surgery in late March shows UNDETECTABLE levels of prostate-specific antigen.

It was not unexpected. When the prostate has been removed and found not to have cancer cells near its margins, and the tumour is low-grade (Gleason 6), and there was no sign of anything in its immediate vicinity being cancerous, well the PSA will usually be nil.

However, it’s one thing to “know” this before the test, to understand this indeed is the likely outcome of the first PSA, because that’s what all the research, etc, says will be the case – but it’s quite another to actually get the result that confirms it.

Nil, zilch, zero.

Does this mean I’m cured?

No.

It’s great news, but there’s a long way to go yet.

I can’t use the C word until about 2020, when I’m 72, probably.

The next stage where trouble might arise is about two years from now, a common point at which PSA can suddenly start to show, and then to starting doubling.

If I get through that (and it’s quite likely I will, given the facts so far), then five years is another milestone. Then a decade.

But, hey, there’s no point dwelling on all that.

I’m now dwelling on a new role in life as a member of the NZ Prostate Cancer Foundation’s executive committee, one of a small group of people charged with making sure the messages about prostate cancer – early detection, better treatment, etc – get out to all men in Aotearoa.

And our first big challenge is making sure the upcoming Health Select Committee inquiry into screening and detection is appraised of up-to-date information about what’s going on.

This blog continues to grow in reach. NZ readership is up since word of its existence was put around PCF members, and since a link was placed on the PCF website (see below). It’s also linked to Scoop website, where it will be the first of a new health section being launched by Scoop founder Alastair Thompson.

Daily hits average around 200 these days, with 300 within reach on busy days.

American readers continue to make up more than half the audience.

July 17 update:

NZ Prostate Cancer Foundation adds ‘Prostablog’ to its website

We’ve arrived! Prostablog has been “adopted” by the Prostate Cancer Foundation of New Zealand as its blog and there is now a link to us from the foundation’s website.

It’s been a good week for Prostablog in other ways: on Wednesday we had 225 hits, our biggest ever readership since the site began on April 1.

Page loads now average about 150 a day, not counting those who have an RSS feed (not counted by StatCounter).

The site has had 8385 hits in its two and a half months.

This is the 599th post.

The biggest readership is from the US (about 45%), while NZ viewers make up between 25% and 30%. The chart below shows where some of the last 2000 hits came from (the chart on StatCounter is much longer than this):

June 13 update:

Prostablog posted its 400th story today and continues to rate number one on the WordPress prostate cancer listings.

On average, about 100 people a day visit the site, although that figure may be many more now because Stat Counter does not record those who get to the site through an RSS feed.

Nearly 5000 have had a look since Prostablog started on April 1, with more than 1000 of them reading My PC Adventure, which now has 22 chapters and nearly 30,000 words.

Readership continues to grow in the US, where more than 42% of Prostablog visitors reside. NZ readers make up about 27%.

May 13 update:

MAY 13: PROSTABLOG NZ:  Nothing like a bit of skiting:  but hey, this is the 200th post on Prostablog, and yesterday we had 158 hits, 38 more than the previous best (as the StatCounter graph above shows).

Prostablog was started on April 1 (no kidding) and now ranks consistently on page one of the WordPress prostate blogs circuit.

Yesterday, for a while (these things are so transient) we were number 1 of more than 14,000 prostate blogs.

Readership patterns are changing quite rapidly.

A couple of weeks ago, 60% of viewers came from NZ, with the US second on 28%. Yesterday the audience was 42% Kiwi, 37% American, 6% British, 3% Ozzie and 2% Canadian.

COUNTRY STATS: The above shows hits since April 26 when the Prostablog StatCounter was set up.

The American interest can probably be attributed to critical mass, but also to my connection to the best US prostate website, the New Prostate Cancer Info-Link, which is extraordinarily balanced, thorough and on to it.

I suspect there has also been a renewed interest in the US following the publication of two long-term studies, and debate at the recent annual meeting of the American Urological Association.

Two hits have come from Mauritius, presumably looking at the rowing race commentary.

The only person missing from the viewer list seems to be NZ’s new Minister of Health, Tony Ryall, who has so far not responded to my questions about where prostate cancer ranks in the government’s new health priorities.

My early speculation that we seemed to have a dedicated follower in Auckland’s Mt Eden Prison (according to the StatCounter satellite map) was answered when StatCounter explained the pointers show the broadcast site, not the actual location of viewers.

So, how significant is 150+ hits in a day?

Who knows for sure. Given that nobody else seems to be posting anything much in NZ at the moment (I’m the sole forum poster on the Prostate Cancer Foundation of NZ’s forum page), it seems okay.

The audience will always be niche, I’m thinking. Until I got prostate cancer I selfishly ignored it: someone else’s problem.

I have a beard, so joining in Movember (when Kiwi and Ozzie males grow ‘taches to raise funds for prostate cancer research) was out.

I think I’m probably typical of most people in terms of their attitudes to afflictions not suffered by them or close family.

Google is always held up as some sort of measure of success in cyberspace, but in the case of Prostablog the showings are baffling.

It has rated right up on page one, briefly, in searches for “prostate”, but other times it doesn’t rank on the top 20 pages, even though many high-ranking posts are years old and totally outdated.

If you search “prostate cancer blogs” in the NZ Google, I come up as the top posting, but only in reference to my profile on the Prostate Cancer Foundation forum.

Similarly, a reference to Prostablog by well-known NZ media law blogger Steven Price rates a high listing.

Something to do with algorithms, I know, but it does raise a question over Google’s actual usefulness to anyone other than the most dedicated searcher.

Then again, I guess prostate cancer sufferers will often have the time and motivation.

Incidentally, for overseas readers who may not know, “skiting” is a Kiwi word for boasting.

May 1 update:

After 182 posts and exactly one month, Prostablog is still averaging up to 100 hits a day, 60% of them from NZ, 28% from the US and about 6% from the UK.

The site has had more than 3000 page uploads and more than 2000 unique visitors since it was launched on April 1.

The most-read item is the full story of My PC Adventure, with the Wall Street Journal series second, then the page on why I’m writing the blog and the progress reports on the Indian Ocean Rowing Race.

One seemingly avid reader is shown on the Stats Counter recent visitors’ map as being located in Mt Eden Prison in Auckland. Whover you are we hope you’re getting adequate treatment in jail.

Prostablog continues to be ranked top prostate blog by WordPress, as shown in this result today, where it was listed as the most “relevant result” from more than 12,000:

April 23 update:

IT’S always difficult to interpret the goings-on of the web.

But it may be worth mentioning that today Prostablog made it to the first page of Google world-wide under “prostate” and was judged number ONE “most relevant” prostate blog out of more than 8000 on WordPress.

I think that’s encouraging. Hard to know for sure.

I recall that in its early days, the blog didn’t appear anywhere on the first 30 pages of Google prostate searches, and even then it made it only because Steven Price gave me a kind plug on his Media Law Journal site.

Prosta-blog, launched on April 1, made its 100th post today and recently has been averaging about 70 to 80 hits a day from around the world.

But so far things are slow in terms of comments (none from NZ), votes on the poll about whether we should have government-funded screening, and requests to join the NZ Prostate Discussion Group.

The latter will take a while, according to a member of the New Prostate Cancer Info-Link discussion group in the US, who says Mike, the very hard-working site admin guy, needed a year to amass the membership and active forums you see there today.

I’ve joined his groups. They’re excellent, because you can go in and read (and contribute) to threads that relate to your own experience.

For example, other men talk about things that scared them (and me) like blood in the urine, what to do with your first erection (don’t touch it for three months, one guy was warned by his urologist – that’s one helluva prolonged erection. Just kidding), how weight loss is sometimes an after-effect of radical prostatectomy, etc.

It’s bloody reassuring to know you’re not the only one to experience these things.

Alone-ness is the biggest psychological enemy as you move through recovery, because there’s only so many times you can ring up your surgeon or other medics to ask if such-and-such is “normal”.

The more time I spend doing this blog, the more I’m learning about the disease. Seems to me, we have a way to go here in NZ before we can be confident that enough is being done to publicise this scourge in all its challenging details.

Help me out here – pass the word on about Prosta-blog. I intend to keep it going with daily updates on PC news even after I have to go back to earning a living in late May.

In my own time, of course, boss.

April 16 update:

AS this snapshot of the statistics indicates, Prostablog is showing some growth in viewership since it began two weeks ago.

That’s great news. It means you’re passing the word on and more and more people are having a look. Already, I’m getting feedback from people who find it useful. For example:

“Had the finger last year, woman GP.   Said mine was slightly rough but no big deal.  Funny thing is I’ve been saying for years that I can’t pee like a young bloke anymore. My dad had treatment about six years ago at 65 so I figured I would get myself checked out.    I reckon after reading your blog I might get another check.  I can pee OK but I can’t force it out like I used to and sometimes in the night I have to clear my mind before it’ll flow.   Good on you for blogging about it.”

“I swear most of the men I know over 50 except for my husband have had prostate cancer.”

“I was converted by Barry Young several years ago and have an annual PSA test – plus the annual anal.”

“Thank goodness you are okay. Good on you getting the word out there; it’s an important topic.”

“…I was reading your PC blog! Very interesting and evocative, I felt as if you took me right in there with you.”

“Having now read your blog I must say it reminded me a great deal  of my time in … Hospital wards and life in wards (especially night life in wards).”

“…I know a rapidly growing number of blokes who have “been there, done that” and are now fine, in fact finer than fine! I absolutely support free testing for men and will add my vote.  Will forward your email to R… and nag him along for another test. I read your blog over a flat white first thing, it must have all been very worrying for Lin too, partners are often the forgotten “victims”  aren’t they?  Get better old thing, and if I may throw in a bit of doggerel….Wherever you be, may you wee flow free,  except in front of the students obviously… ‘

“…I’ve always thought men were a little hard done by compared to the publicity breast cancer gets.”

“…enjoyed reading your blog.  Bloody personal stuff isn’t it!  Good on you for getting the word out.”

The beginning – April 1, 2009:

I WAS motivated to write this account of my cancer experience because the official literature, quite naturally, comes from the viewpoint of medical and support people who deal with it.

While their accounts are helpful, professional, they are by needs addressed to an “average” sufferer.

This blog  – which probably reveals far too much about me  than is good for any of us –  aims to record the ordeal of just one patient: what I was told, how I was treated, what I felt, how my wife, Lin, and I dealt with it, how our family, friends and colleagues reacted.

It is written in a way that most journalists write, an intro on each piece that is aimed to drag you in and take you through a narrative that is hopefully informative and useful, and at times even entertaining.

A key aim is to persuade men my age to get themselves checked regularly and properly, because I feel bloody lucky that in my case the disease was caught early and at a treatable stage.

I’m not quite out of the woods yet, there’s a few more hurdles to clamber over, but my prognosis is excellent, and I hope to convince those who think they can ignore all this that they’re wrong.

If just one other person reads the series and plucks up the courage to ask his GP to briefly explore his rear end, then the job is done.

I’m writing the parts at the rate of one every couple of days, which is all I can manage: sitting at a computer for too long seems to irritate something and that doesn’t seem like a smart idea.

When I’m not dealing with prostate cancer (99% of the time) I fill my days being a journalism teacher at Whitireia Community Polytechnic’s journalism school in Wellington’s Cuba Mall. I have a couple of months’ leave between courses and will return in late May to start the next.

I’ve had a lifetime in journalism, starting at the age of 17 and working my way up to be editor of the Auckland Star in the mid-80s, then “retiring” at 40 to go teaching for just a few months. Now, 22 years later and aged 62, I’m still doing that, and getting as much joy and satisfaction from it as I ever did as a working journo. I intend that to continue.

Incidentally, if you’re wondering about the changing pictures in the blog header, photography is another interest. I teach it at the J School and Lin and I own a Nikon D80, which shoots high quality stuff.

A lifetime of thanks goes to the surgeon who did my operation, Rodney Studd, and his team at Wellington Hospital; my ever-vigilant GP, Rob McIlroy; Wellington Hospital’s urology department head nurse, Bob Hale; the wonderful nurses at Wellington Hospital surgical ward; rehab clinic nurse-manager Cathy Acton; and last, but never least, my ever-loving and long-suffering wife, Lin. God bless you all.

And, of course, thanks to my friends, colleagues and students, and Whitireia Community Polytechnic, which hopes to get me back one day to do some more teaching.