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Archive for the ‘Prostate blogs’ Category

PROSTA DROP: What happened on July 7 to drive readers away?

PROSTABLOG NZ:  Who were those people – and what did they want?

I’m talking about 100 or more souls – most of them from the US – who seem suddenly to have stopped looking at this blog.

They may have rumbled me, of course.

For months now, I’ve been using the word “catheter” as a tag (key word) on every post, based on my observation late last year that “catheter” is the most popular search word used by people searching the web looking for prostate cancer stuff.

Every day for the last six months, in the list of terms people used to find this blog, “catheter” would have 100 more mentions than any other word.

A single post (of more than 1350 now) called “All quiet in the western ward…” for a long time got more visits than all other posts put together. It has a drawing of a catheter in it, as well as a picture of our cat and one of comedian Billy Connolly.

This all reached a climax in July 7, when Prostablog was visited by 470 people in a single day, the first time 400 had been exceeded.

But since then – people have stayed away in their droves.

BIG DAY: July 7, when Prostablog's readership hit the big time - then crashed.

The blog now averages just over 100 visits a day (down from 230), and the proportion from the US has dropped from 67% to about 45%.

So who were they? And why did they suddenly decide to go elsewhere?

Or has there been some interference from some eminence gris lurking somewhere on the world wide web?

Perhaps they all belonged to a catheter fetish organisation, which finally saw through my shallow ruse.

Anyway. it may not be a bad thing.

I notice those who stay reading Prostablog for more than a couple of seconds have increased from 10% to 25%, which is encouraging.

There’s a website in NZ called Open Parachute which ranks the 200 most popular blogs in the country. Prostablog made it to number 23 in June.

I expect we’ll be down the list a long way this month.

But, what the hell: I’d rather have you high quality readers than those other guys.

NOTE: Prostablog is heading for 100,000 hits since starting in April, 2009. At one stage earlier this month I thought we would make it by now, but I’ll revise that in view of what’s happened. Maybe we’ll hit the magic mark in a couple of months.

NOTE 2: I’ve used “catheter” as a tag for this post. Maybe one of the fetishists will see this and come forward to explain himself. Maybe not…

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What I now know – or think I know – about prostate cancer

MY PC Adventure – Chapter 25

See the full story HERE>

I was alarmed recently to get a call from a mate who has just been diagnosed with prostate cancer.

Alarmed on two counts:

  1. Here was another friend diagnosed with the disease.
  2. 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:

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)?

  1. All men above 50 should get themselves tested for prostate cancer. After the age of 60, it should be an annual event.
  2. 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.
  3. 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.
  4. 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.
  5. 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…
  6. 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.
  7. 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).
  8. 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).
  9. 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.
  10. 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.
  11. A lot of research is going into trying to establish whether PSA testing is effective, but so far the results are confused.
  12. A lot of research and money are going into new tests, drugs and treatments, especially in the US.
  13. 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.
  14. 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.
  15. 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

I read new stuff about prostate cancer every time I check my Google Alerts and RSS feeds, and I’m regularly surprised by new slants on aspects I thought I was familiar with.

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.

Read the full My PC Adventure story HERE>

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PROSTABLOG NZ: I seem to be hearing from more and more friends and acquaintances that they’ve got prostate cancer.

And it’s not because they know I do this blog. These are people who’ve never read it. Why would they? Who would – until they are diagnosed, of course.

It’s difficult to know what to say to people who contact me. I never give medical advice (I’m not a doctor, after all), but I can tell people where to look for information. I guess that’s something.

It makes me think I should have another close look at current web postings on prostate cancer and update things.

Watch for new postings over the next few weeks.

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My PC Adventure – 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.

OREWA SUNRISE: Portents of rain over Great Barrier Island.

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.

YOUNG OLLIE: Me and Lin with Oliver Tucker - grandparenthood is such a bonus.

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.

What scar?

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.

READ the full story here: MY PC ADVENTURE

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PROSTABLOG NZ:  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

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PROSTABLOG NZ: You Tube’s silent treatment of my plea to restore my piddling video because it has a social value transcending their “community guidelines” raises some issues.

These have nothing to do with prostate cancer, but bear with me.

As a journalist with nearly half a century’s experience, I’m finally waking up to the fact that media accountability has slipped even further away from the ideal.

It was never strong. Large media organisations have tended to deal arbitrarily with complaints, often calling on the utility of press freedom to justify their frequent breaches of public trust.

But at least there were actual mechanisms for holding them to account.

You could write to the editor, and if that didn’t do it, complain to the regulatory body – although, because it was usually self-regulatory, you didn’t hold your breath waiting for satisfaction.

You got a better deal with broadcasting in countries like NZ, which (under the guise of governments “needing to allot frequencies in orderly fashion”) have laws regulating media behaviour, laws with teeth.

Now, we have You Tube, which – like still images website Flickr, and aggregators like Google – is a global behemoth run by computers, and a law entirely unto itself.

If they choose to ignore your complaint, they will. And in my case, have. And there are no regulatory agencies to whom I can take my case, except perhaps the courts, if I had enough money.

There is an irony here. I could perhaps go to the “old media” and have them air it, if they could be persuaded.

They might be interested. After all, it’s a fairly bizarre case, isn’t it: prominent Kiwi journalism educator gets pissed off after his socially important video on, um, pissing, is taken off line.

It’s the sort of weird story that appears daily in newspaper “odd spots” round the world.

Then, and only then, might the new model of media conglomerate sit up and take notice.

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PROSTABLOGNZ: I guess this confirms it – You Tube is a machine.

There has been no response to my plea to restore my pee video, despite what is undeniably a strong case.

Proof, surely, that the popular video site is run by a computer.

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The "prostabus" and Queenstown's Remarkables on one of our rare fine days.

PROSTABLOG NZ:  This a brief bulletin from our campervan deep in the South Island of NZ, which seems to have been by-passed by summer.

The temperature as we sat outside in Dunedin having dinner last night was 8 degrees!

So far we’ve covered about 2000 kilometres around the bottom half of the island and now live a gypsy life, surrounded by rental campervans driven by holidaying couples and families from every part of the world.

Over the next few weeks I’ll post some of the photos I’ve been taking.

This blog, incidentally, continues to get about 300 hits a day and has drawn some nice feedback. Thank you to those who have contributed.

My health is good and any problems are related only to too many hours wrestling the wheel of the van in high winds (sore arms) or feeling a bit seedy in the mornings from too much fine Central Otago pinot noir the night before.

Oh, and one other piece of excellent news – we became grandparents for the first time on December 30 with the safe arrival of “Sparky” Tucker to Megan and our son Kirk.

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I’m over prostate cancer.

I’m not claiming to be cured. It’s just that spending three or more hours a 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. READ MORE>

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BUZZ MACHINE: Incontinence and impotence are two frightening words for a grown man, but they are the side-effects of removing the prostate and its cancer with it, writes US media blogger Jeff Jarvis in a blog he calls the “penis post”. READ MORE>

Worth the price, or at least that’s the calculation one makes beforehand: Cancer or erections? Cancer or dry underwear? Cancer loses.

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