A physician’s journey beyond radical prostate surgery, part IV: life beyond a leg bag

NotSureGraeme Rocker is a professor at Dalhousie University in Halifax

Editor’s note: Part I of this series appeared as a Humanities article in CMAJ; parts II and III appeared on CMAJ Blogs.

Extending the range

At week 2, my family doc gently removed staples and catheter. Her opinion was that, with good health, no diabetes and age on my side, I might avoid the spectre of incontinence. As my D-day approached (Depend underwear day), I was a willing participant in some surgical gallows humour. Fellow aficionados of international rugby posited whole new ways to escape the half-time line-up of thousands of men going for a pee. With the right under-clothing, friends could sit and enjoy another pint. One might empty a leg bag over the shoes of the opposing side’s supporters at English Premier League soccer matches. Such impure thoughts brought levity to an existence ruled by distances to nearby bathrooms and sleep fractured by contorted positions imposed by the catheter and leg bag. As it happens, my family doc was right and the box of Depend was stored away quite early.

Small indignities, minor victories

There’s only so much you can do with the sensation of a watermelon hanging and banging between your thighs. I could only walk a few hundred metres. Making it all the way round our local block (about a kilometre) seemed like a major triumph. At 4 weeks, while achieving something resembling a power walk, I was ever more cognizant of an astonishing degree of deconditioning.

As for consequences of lymphedema (inevitable after pelvic node dissection), I took the advice of my excellent surgeon to “wear tight underwear” and “not to let things dangle between the thighs at night”. Where on earth, I wondered, was it supposed to dangle? On a particularly bad day, I mistakenly slipped into a pair of my wife’s tighter panties that somehow had ended up in my drawer, something that made us both keel over with laughter.

Although things were generally moving in the right direction, small indignities could quickly erode my sense of self and quality of life. It saddened me on one particular day, even with foreknowledge, that guiding a flow of urine at the porcelain bowl was all my distorted organ was good for now. Bending to put on socks or do up laces was a challenge for weeks.

At some point, several weeks into all of this, I became a bit amorous. A dry orgasm was a very odd experience — not pleasant, because referred pain into my rectum was really quite uncomfortable. This was yet another negative consequence to add to the others. On the plus side, I was back on the wine and greatly enjoying the reconnection. At week 4, I could sleep on my stomach without too much discomfort, and the weird and transient collections of lymph in my body wall were beginning to abate.

A follow-up visit

I understand why no right-minded urologist would ever see a patient too soon after surgery, with only whining and misery to report; however, there was a definite upturn at six weeks. Heavy grapefruit twixt thighs was morphing towards an orange. I could have met a nurse skilled in various techniques that can enhance capacity and tumescence of male equipment stripped of pertinent nerves. I was simply not ready to consider vacuum pumps, implants or injections. I’ll be asked to reconsider these things at another visit, but I suspect my answer will be the same. On a brighter note, I was given the green light to get back on my exercise bicycle. The first few rides were only possible courtesy of seriously padded cycling shorts. With some leg power returning a week or so later, I dispensed with the padding and returned to more comfortable lycra. I had gone through weeks of lycra over tight undies, and it was a huge relief to move on to more conventional attire.

Returning to some normality

At week 7, I climbed four flights of stairs at work and was disappointed at how breathless I felt on the way to a first light clinic. I hadn’t missed the medical side of my life at all, having been transitioning to a more part-time role for a while. Other clinics have followed as I tidy up the returns and a locum looms to help out with new referrals. Many a fond hug or handshake with long-term patients has eased the parting.

I was back to walking Rocky, our glorious Golden Retriever, for decent distances around snow-covered trails in the morning. Being unable to do this in the early stages was traumatic for both of us. Sudden movement and belly laughs are still a challenge to continence, but I’m not giving up on laughter because I’d rather be dead; friends get used to the occasional wince.

At week 8, I took my first plane journey, from Halifax to Vancouver, to attend a conference on the national rollout of the INSPIRED COPD outreach program that I lead in Halifax. I had to be there, and for the most part I was comfortable as a participant and lead faculty.

As week 9 looms, I have lost much of the suprapubic discomfort, although some swelling remains. I still experience an occasional and odd tightness in my medial thighs, a consequence of surgical traction on the genitofemoral nerve. My train track scar is fading slowly, and friends have noticed a positive change in my demeanor, but that's not the whole story. Always an opera fan, my home often resounds to Tristan and Isolde at some volume, and my tears flow now as they have for forty years of listening to this wonderful opera. But they now flow for other reasons too — for what has been lost in my life. Not for me any longer that rousing rhythm of passions inflamed and intense. And yet I can take comfort in past experience and love and great friendships that will be mine to savour until my last day. I am in awe at the wonder of the human voice in full flight, and I break down, but I will not be down for long. I have things to do and places to go.

Leave a Reply

Your email address will not be published. Required fields are marked *