Rule one of medical service: do not transfer to another clinic just because it is “convenient.” Once you are out of the city, you are out of sight. I transferred from the main Clinic in Edmonton to a smaller but closer satellite clinic and this means NO ONE returns your calls including your assigned specialist, your Cancer Clinic Patient navigator, the Cardiologist in charge of making sure my chemo doesn’t do too much damage to my heart and even my own doctor.

After my second chemo cycle it turned out my platelets were too low which increases leakage in my heart. Then my blood pressure dropped (to the point of falling down as my legs folded under me) last week so I’ve stopped  on advice of the triage nurse and am withdrawing from them. Blood taken today had too low a white cell count so no chemo until possibly next week. Because I don’t have chemo I don’t get a consultation so I foolishly called the Oncologist whose assistant promised a call later today which didn’t happen. And I’m betting won’t happen tomorrow unless it’s soothing bullshit and a suggestion to go away until they are ready to see me.

So this is how small town chemo is done: if the last dose hasn’t destroyed your ability to clot blood or crashed your immune system you get your regular each 2 weeks dose and start the sickness routine all over again. Since no one calls you to tell you if the dose has been adjusted, your next treatment might or might not happen pushing your 2 weeks cycle to an unknown, delaying the upcoming heart surgery and unraveling your life.

The medical system, like education, is based on face to face contact. If you are as little as a phone call away you don’t exist.

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  • VanessaVaile  On September 24, 2014 at 1:10 AM

    this makes both seem like something to be avoided if you — which is not always possible. Both also keep coming back to the personal again (haven’t we been saying that for ages by now, since back in our first conversations?)


    • scottx5  On September 24, 2014 at 4:52 PM

      You’d think I’d never learn, and you are right. Today we took the drive to Bonnyville clinic 1 1/2 hours away even though the chemo was cancelled for a consultation. It was explained to me AGAIN how the system does everything it can to help me. Fortunately Leslie went with me because I walked out on the consult and she stayed. Leslie understands and accepts institutional bullshit and values and was able to get them to at least phone me when they hear from the oncologist and will be sure tell me if the dosage has been approved by the cardiologist. Neither the cardiologist nor the oncologist EVER tell me anything so this sounds good but I’m betting it lasts only for one call–if that.

      Since these people are institutionalized beyond human understanding there’s not really any point in bothering them any more. Except of course when I’m told that being more “reasonable” or “polite” will get me better results. I’ve seen their best results, better known as a sloppy interpretation of the bottom end of what they are paid for, so it’s incumbent on me to tell them to go screw themselves. Really it’s no more personal that their phony caring they read for a manual somewhere—I don’t care who they screw, just not me all the time.

      Anyway, with a completely destroyed heart last time it took me 5 weeks to die so I now know when to skip all these fools and just report to the operating room. At least at the University Hospital I’m an interesting training opportunity and THEY love to keep me alive for a return visit. Sound familiar?

  • VanessaVaile  On September 25, 2014 at 5:58 PM

    familiar? indeed it does. the institutionalization is getting worse and the parallels you noted between healthcare and higher education systems do not speak well of either

    my daughter seems to have a knack for dealing with institutional BS, so I’m somewhat less discouraged about prospects of healthcare encounters.

    • scottx5  On September 25, 2014 at 9:03 PM

      Was expecting a promised call back from my oncologist on Tuesday on why my results, again, prevented me from having chemo. Nothing. So yesterday we had the consultation where they promised Leslie to her face they would call either yesterday in the afternoon or today for absolute sure. Nothing. As a kicker, the promised email on the decision chain that prevent me getting chemo which should show that my cardiologist actually talked to my oncologist on the mix that makes me very sick should have come yesterday. Nothing.

      So now they have lied to my wife too. Leave their sight and you vanish. Present in person and they bullshit you. I was taking the Patient Engagement course #medex at Stanford and now switching to a course on Organizational Dynamics. At least they don’t want to inject poison directly into me. Through a tube into my heart anyway.

  • VanessaVaile  On September 26, 2014 at 3:00 PM

    Yeah, the very thought of you in a Patient Engagement course (although the censorship means they were listening more than docs) was close to unbearable irony. I hadn’t noticed before but your comments made me realize that in xMOOCs the contentious take it out on other participants rather than criticizing the course…making me wonder about broader censorship and monitoring via commercially available linguistic analysis software.

    • scottx5  On September 26, 2014 at 4:11 PM

      I actually think the guy who started the course on patient engagement meant well and that’s why I signed up. His co-facilitator in the course though sells Engagement software that includes word recognition and I bet any contentious comments will be flagged. In face 2 face censorship was a red flag to us students so it makes sense that distributing students out to the ends mood altering rhizomes would be a perfect solution to awkward denials of democracy. People from Stanford have always been sketchy characters anyway.

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