Something I give to all my patients who are leaning for the surgical removal of the prostate is a part of a chapter from Patrick Walsh’s book on prostate cancer. It has to do with post-prostatectomy incontinence. The beauty of the piece is that Dr. Walsh thoroughly vets the unpredictable nature of this issue. I have said to patients, “I have done hundreds of these, I do them the exact same way with every precaution regarding continence, but I cannot tell you you will be dry or if you are when that will happen.” The excerpt of this particular chapter makes this point and I feel that giving the couple the article enhances and reinforces this concept. Walsh quotes Osler, “The well wear a crown seen only by the sick.” I love that saying. I get it. You have to be sick once to truly feel it. I have been trying to now put myself in other’s shoes, particularly my patients, to try to feel what they are going through. In this sense, my experience with prostate cancer has helped me as a doctor. (I said helped me…I ain’t there yet.)
So after my surgery my wife gives me a little, “lift you up card” with two penguins holding hands walking on the beach. Essentially it said, “I know that you are now damaged goods but I don’t intend on leaving you anytime soon.” Or something like that. Anyway, we decide to go to the beach the week after my surgery to “recuperate in private.” The thinking was we could go down to Orange Beach, Alabama, a six hour drive, and do all the catheter stuff and transition to diapers down there in anonymity. The thought of someone coming to my home to visit and me having all the urinary paraphernalia draped about my body was a bit much for my ego, I’m sorry. (See “Diaper Diaries – The screenplay- my first diaper buying incident occurred at a Rite Aid on Perdido Beach Blvd.)
About a week after the surgery I take my catheter out, man that was nice, and switch to diapers. For some reason I had in my head that I’d have some control early on and that complete continence would come in a few weeks. That seemed to me the most common scenario in my patients or maybe that is how I perceived how they did (remember up until this point I was just a doctor not a doctor patient). With the diapers and the bloody urine filling them up on an hourly basis, my wife and I agree that it would be good for me to take a walk on the beach. I put the diapers on under a bathing suit and away we go. The route we usually walk is to the left of our condominium and ends at a rock jetty just before Perdido Pass. It is a delightful walk, takes about 45 minutes round trip (one diaper’s worth I figured), and I enjoy having a defined stopping point before turning around. Its fun climbing up on the rocks and watching all the boats come back and forth through the pass.
About half way there my diaper begins to sag. By the time we get to the jetty, they have bulged in a lopsided fashion with that glob absorbent stuff, which now was red, trying to find its way down one side of my bathing suit. I’ve developed an abraded area of skin from this and it is uncomfortable to walk. I had to walk like a cowboy or dare I say a penguin to keep the diaper from rubbing my inner thigh raw. I decided to ditch the diaper. It is the middle of May and it is cool and there are a fair number of beach walkers and folks lying around on the beach. In front of a hotel I saw a wooden enclosure that housed the lounges that are rented. I sneak up to the side of this, much to the chagrin of my wife who has walked ahead to distance herself from being associated with me. I kneel down as if I am looking for something, snatch the diaper out through one pant leg of the suit and in one motion, a maneuver that I will come to prefect in the months to come, I have it out, compressed and stuffed through the wooden slats of the container. (A nice little surprise for the attendant of the lounges. I am sorry, I was desperate.) As I reach my wife, my bathing suit is now wet and has the pinkish tinge of blood in the front. It looked like I had been stabbed there.
I wasn’t embarrassed by all this. In a way it was an adventure. At times we were laughing. What I think helped me was that in my heart I felt that one day it would not be like this, that with time all the issues would resolve. That it would make for a good story to tell. I often time view things in real time as if I am telling a story about it later. (Can you imagine how you’d feel if there was no hope in this? I am grateful for whatever spirit in me, it was not purposeful nor do I take any credit for it, which allowed me to feel that this was a temporary situation and remain optimistic.
It was too cold to jump in the water, although I did try to ease down into the water and let the waves “splash away any evidence of my predicament.” I resigned myself to just waddling back to the room wet, stained and raw. The adventure was not so neat now. I did not feel well. All the medicines I had taken for bladder spasms with the catheter, pain from the surgery were having their after-effect. We were almost back to the room when something interesting happened.
It was if I were in a dream, or better yet superimposed into a movie and the sound effects were heightened and dramatic and so very real. The sound track of the movie was out of balance with the visual. The visual was there but the sounds were just spot on, loud, clear, natural, perfect and over emphasized. (My brother Bob says that the remastered Beatle C.D.’s that were just released have sounds in there like John walking a way from the mike, or someone coughing in the background. That kind of sound, something you hear beyond the obvious.)
I was surrounded by all the beach people and their children. Some are walking, some are throwing things, some are running, children are running and laughing. Imagine this, for yourself as if you are in my movie. Children running, the sounds of waves crashing and children are laughing. It was beautiful children laughing and waves in a soundtrack and in backdrop of all the beach people. The horizon of the ocean looms and completes the scene. But the sounds are what get you and feel.
And then out there on the beach the realization of it all came crashing down upon me, an intense sense of melancholy that I feel right now as I write. I was not well, my pathology report was unknown to me, I am leaking urine and probably would have some degree of impotence. Unseen, unknown to all of those around me, those “well people” the young children without a care in the world and a world where every thing works in their body without even thinking about it or trying to make it that way. “Youth is wasted on the young,” indeed I thought. Why did this happen to me? I wanted it to be easy. Have I taken my previous life for granted? I have let my wife and family down. It was so easy then. The well do have a crown they don’t even know they have and they take for granted.
I can see their crown as plain as day.
When we got home, I found the penguin card, tore the edge of the envelope off and fashioned into the shape of a diaper and pasted it back on the card. Clever huh?
2 Replies to “something attributed to Osler and applies to prostate cancer when you have been treated-“the well wear a crown that only the sick can see.””
Reblogged this on Prostate diaries and commented:
The invisible gift!
Good story, all of us have been there in one way or another, in one situation or another and have reacted in one way or another. I would have wished my surgeon had experienced some or all of the complications of this surgery and recovery. Cancer free but continuing to deal with incontinence, impotence and embarrassment after almost 3 years.