A prognosis of a terminal illness is sabotaged continuously. How? Well, when you take the opiate-based pain medications, you want them to work their magic. You want to be pain free. But the price you pay for being pain free is that you are participating in a disappearing act.
“Maybe the prognosis was wrong. After all, I feel pretty good right now. If all it takes is a little fentanyl patch on my shoulder and an occasional pill, then perhaps all this talk about dying is exaggerated.”
Then, sometimes, a couple hours later, as you moan in frustration at the rapidly increasing pain in your buttocks, you get up and reach for another dilaudid.
“This really sucks! This morning I felt great. Now I feel shitty. I guess I was stupid to wonder about the accuracy of my prognosis after all.”
That’s the most common form it takes for me.
But, the conspiracy can take even more subversive forms and involve other people.
“You know how they talk about a person with cancer wasting away until they are nothing but skin and bones? Well, that’s not happening to Dad. He still has an appetite; he still gets dressed and looks good after cleaning up and shaving. He still tells jokes and is as sarcastic as anyone else in the family. Dad looks good for an old guy and is writing. It’s almost like he doesn’t even have a disease, much less something serious like cancer.”
True, the voice of a son trying to make sense of it all will naturally gravitate towards optimism, towards a wish that he desperately wants to become a reality. But when he expresses those thoughts, he is unintentionally aiding and abetting the conspiracy - “the prognosis must be inaccurate after all.”
When summarizing my condition over a few weeks or even a couple months, the pattern seems to be that there are simply good days and bad days; more specifically, days when part of the day is good and part is bad. Again, over that longer period of time, it seems that those days that I can categorize as having a “mixed” pattern are becoming more frequent.
Because of the “pattern”, I find myself entertaining visitors less frequently, often having to postpone or cancel a visit because I have become too ill or fatigued or simply unable to deal with the pain I’m experiencing to “pull it off”. I don’t trust myself as much either. That quick trip in the passenger seat to pick up a coffee at Chapters becomes a major undertaking, a calculated guess about the time required and how close I will be at any specific time to a washroom. Additionally, sometimes I will find myself with my cane walking down the driveway with a plan to walk around the block, but only having enough energy to make it a few houses down the street.
Whatever is happening, it’s becoming less predictable. Being the controlling type personality that I am, I regret and resent it. Sometimes this means that the smile on my face may be a little forced at times. The pain, unfortunately, when it makes itself known in my facial expressions…well, there’s nothing forced about that.
1 comment:
I have followed your current journey, Don, for several years and before that, marveled at your career changes for several decades. Many of us, and here I put me at the top of the list, do not cope well with change and challenge. We withdraw, hide, complain and do those things that help no one, including ourselves.
So thank you for helping some of us put things into perspective, to understand better the issues arising from such a challenging illness and to appreciate someone who can clinically describe the medical and the emotional so well.
We all can only hope that if we are ever called upon to face such challenges we can recall the wisdom, insight and dignity that you presented in this narrative. May it be available to others should they be compelled to follow this journey.
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