Ok, so here I am, a 58-yr-old survivor of a ruptured sub-arachnoid cerebral haemorrhage (brain aneurysm) 21 years ago, and worn down by the hellish after-effects of the open-skull surgery the docs used to "clip" that aneurysm. See my blog on that experience here: brain aneurysm.
Yes, I know I'm at a forum for PC, not brain surgery! Getting to that. First there is background you need to know. "I PLAN TO REFUSE ALL PC TREATMENTS":
- "DIAGNOSIS, PRE-EXISTING HEALTH ISSUES & MY BIOPSY": several months ago my doc did a full physical exam on me, including a PSA test. I scored 11, up from 4.2 six years ago (I ignored the 4.2, and so did my doc of that time). DRE found a "lump." I was referred for an ultrasound biopsy. The biopsy itself was virtually painless, and the blood in urine, stool, etc. happened exactly as the docs said it would. But my pre-existing severe case of Irritable Bowel Syndrome (IBS) has been noticeably aggravated since the biopsy. Most IBS sufferers complain of chronic constipation. Not me! MY lower GI tract roars like a Nascar! For many of my adult years I struggled with chronic diarrhea, which is socially embarassing, to say the very least! I experienced the ultimate social humilation numerous times: fecal incontinence - always in a public place,of course! Somehow, in recent years the diarrhea has stopped and become, instead, just regular, healthy BMs....but urgent, and non-stop (hard to believe, I know!). i've been keeping the makers of Imodium in business for decades, I hope they appreciate it. Seriously, I have to consume vast quantitites of Imodium daily, just to slow my GI tract down to a manageable pace. Still, my bowels are damned fussy and don't like to be fooled around with in ANY way.(Over the years I've been examined for every possible GI Tract pathology. Chron's, etc. Nope. Just plain IBS. Docs don't what causes it, and they have no treatment for it. They tell you "Just learn to live with it.") So...you can see it coming.....days after the biopsy my GI tract began revving up like a monster truck! I've had to nearly double my already-ourageous dose of Imodium. Even so, I've been living virtually chained to the WC! My life as a brain injury survivor had already made me mostly agoraphobic. Now, thanks to the biopsy, I've become almost completely shut-in. I can't be away from a toilet for more than a few minutes. You learn to plan any forays out of the house for speed and near the best public toilets. What a life! not.
- "THE WALKING DEAD":although the "clipping" surgery for my brain aneurysm nominally saved my life, I've felt like the Walking Dead ever since, for these last 21 years. Brain surgery is damn tricky, and the docs generally don't prepare patients for for their new-and-damaged post-op life: a life of endless medications, mentall illness, some physical infirmity, depression/anxiety syndrome, organic personality change, suicidal mentation, etc. etc. I could go on. I attempetd suicide once. (All the gory details are there on my blog. link above) My main point here is, life wasn't so great already. Now i'm facing PC. Life just got worse.
- "I LEARN ALL ABOUT PC": In the time between that PSA test and today, I've been researching like mad on the topic of PC. I've learned a lot: the imprecision of PSA testing; the sometimes harmful false positives arising from defective PSA screens leading to unnecessary, and sometimes harmful, biopsies; the risky PC treatments and their awful after-effects. Luckily I'm a Canadian, so the cost of health care is irrelevant to me. I'll get what I need without spending a penny. We have free universal health care here. [well, payroll-tax-funded -"feels" like free!] Canada has had universal health care since the 1960's...it's a Very Good Thing. (Why can't you Americans work that out, anyway, for Pete's sake? What's the problem!)
- "I HAVE SOME DECISIONS TO MAKE": given the adverse reaction I've already had after just Step One along the way to PC prognosis and treatment, and given that my life already is terribly disturbed, both mentally and physically,AND given the creepy possibilities for after-effects of PC treatment (impotence, incontinence, wasting, cancer pain), WHY on EARTH would I ever submit to the docs' radiation guns, robotic blades, chemical and hormonal tortures, when already they've got me chained to the WC and shut-in??? I want to have my dignity. I will NOT risk one more degree of aggravation of my IBS. I will NOT wear Depends until I die. I will NOT wear a colostomy bag. I will NOT be turned into a woman! I will NOT be impotent. I will accept palliative care.
- "I'VE WRITTEN A LETTER TO DADDY": I've written a Living Will, in which I stipulate that, should I become sick with PC and eventually unable to speak up for myself, I refuse all treatments. I will accept only palliative care.
Ya see, I'd rather be living perpetually stoned on morphine, or oxycontin, or (Hey, Ya!) medicinal marijuana but still able to move about in the world without profound embarassment. I could never tolerate the humilation of chronic incontinence, adult diapers, impotency - all known risks to "treatments" the docs have for PC. Hey man, I was a stoner in my younger years, I like drugs. Gimme drugs!
After what I've been through the last 21 years, the hideous psychic pain of brain surgery, I am NOT willing to be Their science experiment again. I've developed a healthy distrust of doctors. They too often promise the stars and deliver the moon.
I've had enough! NO MORE FOOLING WITH MY BODY! If I'm going to be sick with PC, I'll be sick on MY terms. Not theirs.
Can any of you men out there see logic in my not wanting any treatment? I know I sound pretty damn-well convinced of my own righteousness, but in fact I AM open to rational debate. I could change my mind, should I find reasons to do so.