Disclaimer

This blog contains information that would normally be kept private.

Do not read on if you don’t need to know stuff about the author’s reproductive organs and other essentials.

So why disclose? Partly to help raise awareness about prostate cancer and blood cancers; and partly because it helps the author to make sense of it all.

It’s not all doom and gloom…

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Approaching zero

Three years after surgery and my PSA reading is less than 0.01%.

That’s a great result. There’s a slight chance of recurrence but the rule of thumb is that if you’re registering such low readings three years after surgery, you can pretty much say you’re cured.

That’s cause for celebration, to be sure. It puts a spring in your step and a smile on your dial.

But the collateral damage is forever. That’s the price you pay.

 

 

Keeping an eye out

croc

It was meant to be a celebration.

Two childhood friends, Cindy and Leeann, take a trip to the Daintree Rainforest in Far North Queensland to celebrate Leeann’s recovery from cancer. They go for a moonlight walk along the beach, then wade into waist-deep water.

Leeann feels something brush past her. In an instant, her friend Cindy is gone, taken by a saltwater croc.

So sudden, so brutal. Some are saying so stupid, too, because who in their right mind would walk or swim at a beach in crocodile territory, especially at night?

Maybe if you’ve stared death down, if you’ve convinced the grim reaper to look elsewhere for the time being, you’re more inclined to act on impulse. I don’t know. But Cindy and Leeann’s experience reminds us of the indifference the natural world has for our personal stories, be they celebrations of survival or acknowledgments of loss. Same, same, says the salty croc, with dead eyes opened.

This time last year, on 5 June 2015, I was under the surgeon’s knife, giving up body parts because of cancer, and losing other bits and pieces of myself as collateral damage.

Today, I celebrate my first anniversary as a cancer survivor.

My PSA is undetectable; lymph nodes and bones are clear. These are good things. I’m glad and grateful. But I’m keeping an eye out, all the same, because I know where the swamps are and I’ve heard the gnashing.

RIP, Cindy.

 

Regrets? I’ve got a few …

The sense of regret I was trying to articulate in my previous post is not unusual for men who’ve had prostate cancer surgery.

In today’s Australian Financial Review, health journalist  Jill Margo writes about how hard it is for men to admit we’re not OK.

A year after a radical prostatectomy, 15 per cent of men will still be leaking urine in some way.

And only one in six of us are likely to have resumed sexual activity, post-op.

Yet when we’re asked if we regret the decision to have the surgery, most of say it was a good decision. When asked if we feel the surgery may have harmed us, we’re inclined to say no.

“On the surface it looks like the world is in order,” says leading urologist Claus Roehrborn, professor and chairman of the department of urology at the University of Texas.

But in fact it’s not. Here’s why…

On being wise after the event

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Been thinking about the benefits of hindsight, of being wise after the event.

We tend to discount rear-view wisdom, probably because it’s freely available and arrives too late to be useful.

Foresight, on the other hand, is much more valuable, right?

Foresight draws on our emotional intelligence and our understanding of the facts at hand to assess possible outcomes and decide accordingly. It’s a close as we can get to predicting the future.

Anthony LaPaglia does a great job of playing sad, middle-aged Frank in the just-released Australian film, A Month of Sundays. He’s broken-up with his wife,  his son can’t seem to bear him, and he’s a real estate agent (doing nothing but adding cost to something he’s not produced).

He’s aware of what’s gone wrong in his life, he lives each day in the shadow of his mistakes, and there’s nothing, absolutely nothing, he can do about it.

Until he tells another man what he’s learnt from botching a life-changing event. The man he’s talking to is about to go through the same thing. “I’m telling you, mate, if you don’t get this right, it will come back and bite you.”

Frank shares what he knows. And in doing so, he uncovers the value of hindsight and lightens the load of sadness, for both men.

OK. It’s a mid-life crisis movie. It’s gotta have something like that to leaven the mix.

But the thing is, Frank’s hindsight works as a narrative device and as well as a moment of insight, which is just as good as foresight. If we can’t predict the future, we can at least illuminate the present.

I switch my phone on after the movie finishes. There’s a message from the admissions nurse who checked me in for surgery almost a year ago. She wants to know how I am.

I want to call back and say I feel shite. That I wish this had never happened and I want my old life back.

‘Oh well,’ I imagine her saying. ‘At least you’re not dead.’

And I’d have to agree, she’s got a point.

 

 

 

 

 

 

The daily grind and how to beat it

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It’s not possible to write about Body Electric without raising eyebrows, without risk.

Because as soon as you say, or write, the words “erotic massage” a whole suite of judgements jump into our head. Or at least they did into mine.

Hippy shit. Psycho babble. Key parties, pervy pooves and creepy crap. And that’s just for starters.

So the first thing you’ve got to do if you want to get a handle on Body Electric is to turn off that inner critic. We also need to agree that eroticism and sex are inter-related but they’re not the same thing.

Sex, mostly, is about genital contact that leads to orgasm or ejaculation. A very basic definition, I know. But bear with me…

Eroticism, on the other hand, is not focussed on genitals. It’s about the erogenous zones that exist across our bodies and within our minds, and it’s about the actions or objects that activate those zones.

Over the weekend just passed, I participated in a Celebrating the Body Electric program with a group of 20 men and it was freaking amazing.

I’ve never parachuted, because I think the laws of gravity are more powerful than rope and silk. But I imagine the feeling you get after a parachute jump would be similar to how we felt at the end of last weekend.

We checked-in on Friday night as strangers to each other. Over the next 48 hours, we learnt about intimacy, trust and honesty. We learnt how to generate and sustain our erotic energy, and how to give and receive erotic pleasure without erections and/or ejaculation.

Spooky?

Not really. It was challenging and sometimes scary. It took us way beyond our comfort zone. And I have to admit to plotting my escape at least once or twice in the first 24 hours.

Thankfully, my internal critic was overwhelmed by the sheer bloody thrill of engaging with other men in ways that we rarely do in our everyday lives.

So why did I do it?

I want to re-establish my sex life. Previously, sex was a no-brainer. But as you know, that all changed after prostate cancer surgery. Without semen, and without an erection, I was feeling well and truly mansacked. My sex life, if that’s what you’d call it, was  now medicalised, dysfunctional and dissatisfying.

Body Electric is not a magic cure. But it did significantly broaden my horizons and lead me back in the world of possibilities.

For the past year or two, I’ve been grinding my teeth in my sleep. Expressing pent-up frustration, anger and sadness.

My dentist made a mouthguard to wear to minimise the damage, and that kind of worked. Well, it addressed the symptoms, at least, but not the cause…

The thing is, that mouthguard has sat untouched on my bedside table since I got home on Sunday night.

Seems like there’s nothing like a bit of erotic energy to beat the daily grind.

 

 

The prostate matters in a gay man’s sex life

Today’s Australian Financial Review picks up on the impacts of prostate cancer on gay men.

The article highlights the Prostate Council of Australia’s publication of four booklets written specifically for a gay cohort (and mentioned on Mansacked recently).

“After being invisible in the prostate cancer community for 20 years, gay and bisexual men are finally being seen,” writes the AFR’s Jill Margo.

“Late in 2015, a set of four booklets was produced in Australia specifically for gay and bisexual men.

“This is thought to be a world first and the initiative was funded by the federal government via a Cancer Australia grant.

“The booklets take a frank look at the role of the prostate in gay sex.”

Margo’s article makes no bones about articulating the issues.

“Without a prostate there is no ejaculation and no semen exchange, which has an important role in the sexual play between men who have sex with men.

“Without a prostate, the receptive partner in anal sex doesn’t get the benefit of having his prostate massaged, a process that augments orgasm.

“Without a prostate, the active partner might not have an erection rigid enough for penetrative anal sex. While men might recover some erectile function after surgery, vaginal penetration is generally easier.

“Surgery can cause problems with urinary continence, which can reduce a man’s sense of being sexually desirable. It can also lead to the leaking of urine on orgasm.

“For some men orgasm becomes painful, although this generally doesn’t last.

“Apart from creating a scar, surgery can reduce length and width of the penis, further affecting body image.

“Radiation has a range of issues too, such as a slow decline in potency, reduction in ejaculate and bowel complications.

“Following radiation, the receptive partner might find anal sex makes the pain worse and damages the delicate lining of the anus and rectum.”

Read more: http://www.afr.com/lifestyle/health/mens-health/the-prostate-matters-in-a-gay-mans-sex-life-20160229-gn6hw4#ixzz41iGXfFu1

 

How to beat prostate politics

Men who have been diagnosed with prostate cancer face a confusing array of treatment choices, each with its own price tag and “idiosyncratic” side effects, we’re told in a news report this week.

The confusion is intensified by the politics surrounding prostate cancer treatment.

The medical specialists who favour radiation therapy are in one corner; in the other corner are the urologists who favour surgery.

Radiation oncologist Professor Sandra Turner told the Sydney Morning Herald  that urologists are failing to provide information about the alternatives to surgery.

“It’s not all about money, but the bottom line is, there’s a massive financial incentive for surgeons to do an operation and they may not even be conscious of it,” Professor Turner said.

“If you know that the core of your business is prostatectomies and you even lose 20 to 30 per cent of those guys who never have an operation, that’s a massive chunk of your income.”

Youch!

The Urological Society president, Mark Frydenberg, responded by acknowledging that surgeons’ fees are largely unregulated but urologists take seriously their obligation to look after patients.

Besides, the mortality rate for prostate cancer patients treated with radiotherapy was higher, he said, than for those who had surgery.

So where does that leave the 20,000 or so of us who are diagnosed with prostate cancer each year in Australia, and the more than 1.1 million men diagnosed each year, worldwide?

Plenty of people will tell you the best thing you can do is seek out information and get advice.

Problem is, there’s so much information floating around, and the advice you get is often contradictory.

I was able to talk to my father about his experiences with prostate cancer surgery, and I had a urologist who I instinctively trusted because he came across as a no-bullshit kind of guy. These things helped.

But making an informed decision based on all the available evidence felt like a herculean task. I had no prior experience in this area, so how could I get across the options in the short period of time available?

During the past year or so, I’ve had elevated PSA readings, had a biopsy, been diagnosed with prostate cancer, had surgery, and experienced “idiosyncratic” side effects such as incontinence and loss of sexual function.

The information needed to navigate these things rarely comes to you upfront, in one neat package. Some of it is volunteered; much of it has to be asked for; sometimes you stumble across it. The best collection of information I received was a kit a nurse gave me when I checked out of hospital, after the op. Better late than never…

The takeaway here is to seek information that’s specific to your age, your general health, and the particulars of your cancer. The kit I received from my nurse, post-op, was written for gay and bisexual men. It’s available here.

Avoid information-overload by finding a General Practitioner that you like and trust. She or he becomes your go-to person, the one who makes sense of your test results and explains things like the PSA testing guidelines, recently approved by the National Health and Medical Research Council.

Finally, be open to learning from other men’s experiences. Dan’s Journey Through Prostate Cancer is a blog worth visiting, and support groups such as those listed here are also useful.

These are the ways we can beat prostate politics.