My father died of esophageal cancer several years ago. It was a horrible, lingering death, and I watched him shrivel and die, in constant pain towards the end. On one of my last visits to his bedside, he asked me whether I thought it was better to die with the full knowledge of what was happening to you, or to be unaware.
It was a startling, unexpected question. My father and I had had few, if any, philosophical discussions in our lives together. Without giving it a lot of thought, I replied, “With knowledge.” I probably thought he was talking about the pain-killing drugs he could ask for, the sort that also numb your mind and make you oblivious, put you into a narcotic coma that takes away the pain and stress.
I have always wanted to know what is happening to me, to be aware of everything around me. I would hate to be unable to read as I do every day now. I would have assumed he would too — both my parents were voracious readers — but he never gave me back his own response, just looked up at the ceiling. I probably thought he was having a pain spasm and didn’t try to pursue it further. I should have noticed then that he was reading less and less as the cancer progressed.
But later I thought more about it, about his question and my response. I still do, but he died before I could return to discuss it with him.
By the time my father was sent to the hospital for his remaining time palliative care, my mother had already been placed in a nursing home. My father had resigned himself to the fact he could no longer care for her as she needed. She had had a stroke in 1960, leaving her left side paralyzed, and by the mid-1990s, was pretty much wheelchair-bound. My father continued to care for her every day, stoic and uncomplaining as he had for almost four decades, but at 92 he simply didn’t have the strength to move her in and out of her chair or bed, or lift her when she fell. The move to a care facility was mandated by both their ages and declining health.
The nursing home had basically two classes of patients: those with able minds, like my mother, and those in various stages of dementia, Alzheimer’s, or other forms of senility that robbed them of their mental capacities. Until he was hospitalized, my father visited my mother daily, driving to and from to sit with her for many hours, talking, reading together, having meals together. He would have seen these other people, some in almost vegetative states, being cared for and fed by staff. Some were incapable of even simple functions, many had serious medical issues, too. I also saw them, when we visited her, but gave them little thought aside from some vague sympathy and relief that my mother was still mentally active and aware.
I now suspect my father was far more aware of them than I, and in his last months may have envied them their innocent ignorance, unaware that they were dying, freed from the stress of facing your own rapidly impending death. Mortality never kept them awake at night. Some couldn’t remember even from hour to hour who they were, where they were. My father, however, was as awake as he had been, keenly aware of everything going on around and inside him. He knew what was coming, he knew the inevitable end, he knew he might not awake from the next sleep.
I was thinking about that question this week, as I lay on the operating table waiting for my cystoscopy.The doctor was at the computer reading the results of my most recent blood test as I entered, and announced that my PSA numbers had risen from their post-surgery levels, from below 1 to above 2. That meant my cancer had not been entirely removed along with my prostate, but instead was growing. While intellectually that’s not a terrible surprise when you have been diagnosed with stage 3 and possibly stage 4 prostate cancer, it bodes ill for my survival. Takes the glow right off the rest of the day.
There are treatments available, of course, including radiation and chemotherapy, neither of which I look forward to. Some days I wonder if the treatment isn’t worse than the disease. Their side-effects will likely be worse than anything I am currently experiencing. I lay awake that night for hours, unable to not think about what the future holds and it looked bleak.
Would I still answer my father’s question the same, or would I prefer to be oblivious? I lay awake last night asking myself unanswerable questions like this, but with less certainty about my former answer. Should I, as the euphemism goes, start to get my affairs in order to prepare for the end, or should I hold out optimism that this is just a bump in the road and I have many more years ahead, after I recover from the treatment? I don’t know. As Jim Morrison sang in Roadhouse Blues, “The future’s uncertain/And the end is always near.”
The cystoscopy itself is a rather short but intimidating process. A camera on a tube is inserted into the urethra and pushed along it so the doctor can examine the condition, and even get to look into the bladder. While the camera and tube are really quite small, from the patient’s perspective it looks like a golf ball perched on a garden hose and you wonder how something that big will fit into such a tiny hole. If ever there was an anus-clenching, penis-shrivelling moment, seeing the doctor raise the camera and prepare to insert it is certainly one.
Not to mention I’m lying on the table with my genitals exposed to the doctor and the two female nurses who all watch the procedure. Ah well, my dignity has long since been eroded by my participation in these many procedures, and I’m pretty sure the sight of an old man’s flaccid (and rapidly shrinking) penis wouldn’t evoke much more than clinical interest from them by now. Maybe a smirk or disdainful glance. I won’t regale them with tales of how it once stood proud and firm because I’m sure they’ve heard them from other old, naked men before me. As long as they don’t laugh aloud, I should be fine.*
The doctor squirted an iodine solution all over my penis and testicles, then a topical anesthetic, before he grabbed my penis and pushed the camera into it. No words were spoken, no “this might sting,” or “you might feel something odd…” or even “Here it comes!”
I’ve had this procedure before, so I wasn’t entirely surprised. It shouldn’t be painful, but this time the opening of my urethra really stung, causing me to gasp and twitch a few times. The nurses kept telling me to take a deep breath and uncurl my toes; easy to say but damn, it hurt. Not break-your-arm kind of pain, but certainly one that would keep me awake with curling toes if it continued. Last time I had this done, as I recall, the doctor squirted some topical freezer into the urethra before inserting the camera, but I couldn’t feel or see if that was done this time. If so, it wasn’t very effective.
I should have taken some ibuprofen an hour before all this began, but I forgot. Damn. My toes curled more than once during the procedure, which was mercifully short (maybe 10 minutes or less during which the was camera inserted). Hours later, it would still sting when I peed, but by dinner time it was pretty much back to normal.
Feeling the camera snake all the way almost to my bladder wasn’t painful, but rather uncomfortable, I suppose because we’re used to everything moving the other way: out, not in. But the doctor quickly found the blockage, way up towards the upper end near the bladder, and showed me on the computer monitor: a small stricture where, he said, he had sewn me up after my operation. A bit of scar tissue, I suppose, but it constricted my urine flow rather too much. He said he would have me back for a “five -minute” procedure to laser the tissue away and make my pee flow strong again.
I didn’t even feel the camera being removed until the final sting at the end. The nurses told me to sit up and handed me a towel to cover my nakedness. Rather a bit late for that, I thought, but it did help wipe up some of the still-damp iodine that stained my groin. I was able to get dressed and leave the hospital.
The downside is that 1) I need to be put to sleep for it so I can’t drive myself back home, and 2) I need to wear a catheter again for a week or so while the cut heals. I hate catheters, detest wearing a urine bag day and night, and so far every time I’ve had one, I’ve ended up with a urinary tract infection (UTI) no matter how careful I am, or how much Polysporin I use (I can’t imagine how anyone cannot get one; with cats and a dog and walls full of dust-catching books, we don’t have anything approaching a sterile environment).
Sigh. Something else to look forward to. I await the phone call with the date and time to come back to the hospital. Waiting is a large part of healthcare at all levels.
Once that zapped flesh has healed, I will have to start radiation treatments. Several weeks, every day driving to and from Barrie, although as yet I am not sure the length of time required. At least a month, maybe as long as three months. I suppose I will have a consultation with an oncologist before it happens. What shape I will be in during and by the end, I cannot say. I just hope I can at least retain my hair.
The entire visit took about 90 minutes from the time I entered the hospital, the majority of which was taken up in waiting, form filling, then moving to another room to wait some more. Luckily I brought a couple of books to fill the time (but for several long minutes was seated beside an annoying woman who prattled on her phone, loudly enough for the whole waiting room to hear, about how effective her dog’s shock collar was in making it obedient and how it now cowered at her approach — it was hard to concentrate on reading beside such a loud, unmannerly person, but I chose discretion over valour and did not comment about her behaviour or the likely charge of animal abuse).
The saga continues.
* In her dystopian novel, The Mandibles: A Family, 2029-2047, Lionel Shriver calls old people “shrivs” as in shrivelled, and dementia patients, “blithers.” I thought of her terminology as I lay there on the table, visible shrivelled in at least part of my anatomy. It’s a worthwhile read, by the way, and although somewhat darkly humorous, feels prescient.