The Cancer Diaries, part 5

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The resilience of the human body is truly amazing. Here I am, three weeks after major surgery, and much of my daily life is back to normal. I can drive, walk the dog, unpack the dishwasher, cook meals, pour the wine, feed the cats, walk upright… a far cry from my crabbed old-man style of a week or two ago.

Not that I am fully recovered. I have several weeks or even months ahead of me for that. My incisions are still tender, in particular the spot where the Hemo-vac tube had been inserted. The main incision from my navel to my pubes remains a bit raw and ugly (to my eyes, but I have no Goth sensibilities, I suppose), and the bruising hadn’t quite gone away. I can’t walk or get up from my chair as quickly as before surgery, but I am still ahead of my post-surgery days. Bending or twisting requires some fore-thought to avoid pain, and if possible the inevitable squirt of urine. Sneezing still makes me leak, too (and hurts the scars). Regardless, I try to get up and move about, walk the dog, go upstairs, do my chores, and get my limited exercise, as often as possible.

Yes, I’m still incontinent, but much, much less than the days immediately following the catheter removal.  My nights are dry, although I get up two or three times to empty my bladder. I graduated from a diaper to a stick-on pad, too. 

Incontinence is humiliating and frustrating. We associate it with either the very young or the very old: infancy or dementia. And maybe extreme drunkenness (although I’ve never been quite that drunk, myself, I’ve known others who have).

For a relatively healthy, normal person to suffer from incontinence can be embarrassing and emotionally stressful. Continence is an early milestone when you start to grow up. It says you have control, you’re a big person now, you gained some independence. You’re on the path to being an adult. And suddenly you’re off it, standing in the drug store aisle trying to decide which sort of pad or diaper you need, while other shoppers mill around you. And it’s not like I can ask for advice from the 17-year-old stock clerk.

Losing that control is a downward slide on the snakes-and-ladders game of life. It means we have lost the control that identified us as adults. There’s little more deflating than thinking you have finally regained control only to stand up and feel the squirt of urine that says you still have a long way to go. A long, slow way because there’s nothing that signals you’ve reached the plateau of control. You just keep exercising and hoping tomorrow it will be okay.

No one wants to talk about it because incontinence isn’t a sexy, fun topic like religion, politics or what’s on Netflix, so you have to figure out how to deal with it by yourself. But when I suddenly leak, especially after I’ve been exercising and think I have gained some control, it’s like a personal failure; my inability to control a basic bodily function that I was able control before age five, but can’t at age seventy.

There’s an inevitable sense of shame. All the intellectualism I muster can’t help that. I can tell myself it’s just temporary, it’s the inevitable result of prostate surgery, it’s something thousands of men go through, that it will get better. It doesn’t make me feel better when I squeeze a drop of urine into my pad (the pad is a constant reminder I have limited independence). It erodes my sense of eudaimonia, as the ancient Greeks called it — that feeling of wellbeing I have tried to cultivate all these many years.

As I wrote in a previous post, there really is no one to talk with about the cancer, the surgery, and the recovery. There isn’t a support group either, at least none locally. Sure, the doctor gives you some basics, but no one at any stage of the process even told me to bring a pad or a diaper to the office when I had my catheter removed. I was fortunate to have had that experience previously, so I knew enough to do that. But there is so much more I had to learn on my own.

For example: diapers or pads? Are some brands better? And what size or thickness is appropriate? Do I start with heavy duty and progress to light? Or is there something in the middle? Should I wear one at night and the other in the day? When can I expect to leak the most? Is one liquid I drink more likely to make me pee than another? Should I pee often or hold it? How many exercises must I do every day before I regain control? Do I exercise while peeing? What’s the best position to exercise in?

Why didn’t anyone recommend I start doing Kegel exercises weeks before the surgery, to help strengthen these pelvic muscles sooner? I’m doing my Kegel exercises as often as I can remember to do them, but it might have helped to learn about them weeks ago. I do them lying on the floor as we watch a DVD in the evening. I do them sitting in a chair having a cup of tea in the morning. I do them while reading a book on the couch in the afternoon. I do them while walking Bella and waiting for her to finish sniffing something, I do them while talking on the phone, preparing dinner, plucking some cherry tomatoes from the garden — any time I can remember, I do them. But I wish I had known to practice them in the weeks leading up to surgery. And how do I tell they’re working?

There are more questions. How to best handle pain and discomfort? When does it go away? What medication is safe or recommended to take to mitigate it? What about constipation and diet? What can I safely lift? Are there exercises to help strengthen my sliced-up abdominal muscles that won’t cause other problems or aggravate the scars? Do I need to keep applying Polysporin to the scars, or should I stop? Is there anything left of my sex life? Will Viagra or Cialis help? How do I talk to my partner about this? Is there anything she needs or can help with?

Not having anyone official — a doctor, nurse, psychologist or consultant — to answer these questions is a failing, I think, in the way patients are informed and supported. Patients should get more information sooner, before treatment starts. I don’t question the competence and professionalism of the doctors, nurses, and PSWs I’ve encountered, but there needs to be a wider support network .

And while there are some good sites online, it’s hard to know what are the credible websites to get more information. There’s also a lot of codswallop, fake treatments, con artists, conspiracy wingnuts, and pseudoscience like homeopathy or magic stones to wade past online, even about prostate cancer. But even the credible sites don’t answer most of my basic questions. 

On a more personal note, I am still troubled about my own, somewhat vague future and would like to be able to discuss the options, and the issues. Will I need more tests? How often? What sort of tests and who does them? What results will show I need more treatment? What sort of treatment and where do I go for it? What if it’s not treatable? I don’t dwell on it, or lose sleep over these questions, but I would like to be able to discuss them openly. Who do you talk to about your own mortality?

Still, I revel in my ability to so simple, everyday things again. Walking the dog through the park, even slowly, was a delight I had missed. Being able to make myself a cup of tea to drink on the back deck with a pile of books by my side gives me a sense of freedom. Getting the mail from the box outside is an accomplishment. So every day is a little better than the day before, a small step forward that I don’t take for granted.

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