Broken ties

Know I promised to stop talking about my experience with the cancer system here because it’s counter productive and makes me feel helpless. Assuming things had changed I fell into a fantasy about caring caregivers and then today after waiting a week for a mouthwash prescription to numb the sores in my mouth to be renewed I called the nurse hot line. As usual there is a reason for it not being filled–my oncologist is away, like my doctor is always away, like my cardiologist is always away. But nurses are always available to promise things that won’t happen.

This call got me completely shut down. So I’m finished talking to the system. It’s obvious my unwillingness to be ignored has broken their patience with me.  I’m just trouble and need to go away–fair enough.

Luckily, I’ve run out of patience with them too. And just before my final treatment is very handy. Since my anger has made me speechless and speechless makes me angry, (try growing up with a deaf parent) it no longer furthers my health to talk with these people at all. In fact it weakens me to explain myself over and over and over. To stay intact, a person sometimes needs to allow people to misunderstand and think poorly of them. It’s time for me to practice my listening skills and let bad things end.

By the way, this is a good thing:-)

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  • VanessaVaile  On March 10, 2015 at 6:57 PM

    Talk away ~ you have a right to your voice. You are the last person I would expect to go gentle. I wish I could help or that my listening could make a difference. It makes me mad too — and wary about my own future encounters with health care.

    Used to be nurses could do more but the dehumanized system won’t let.

    From: Scottx5’s Blog To: Sent: Tuesday, March 10, 2015 5:31 PM Subject: [New post] Broken ties #yiv1101324415 a:hover {color:red;}#yiv1101324415 a {text-decoration:none;color:#0088cc;}#yiv1101324415 a.yiv1101324415primaryactionlink:link, #yiv1101324415 a.yiv1101324415primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv1101324415 a.yiv1101324415primaryactionlink:hover, #yiv1101324415 a.yiv1101324415primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv1101324415 | scottx5 posted: “Know I promised to stop talking about my experience with the cancer system here because it’s counter productive and makes me feel helpless. Assuming things had changed I fell into a fantasy about caring caregivers and then today after waiting a week for a” | |

    • scottx5  On March 10, 2015 at 10:43 PM

      Vanessa, I have dealt with nurses that are pretty good people but this whole situation has come to a stand still and it’s time for new tactics. This far down the line it’s obvious no one is interested in finding out why I react the way I do. Also, I’m tired of falling into either feeling sorry for myself or being dismissed as a flake. If I talk it gives them permission to make observations and endless corrections. Since I’ll get the same result from not talking, it seems better to conserve energy.
      Remember as a kid when I’d had enough advice from assholes I’d go silent. I’m sure some Zen practitioner suggested it as a strategy for halting the struggle with the emptiness these sorts of conflicts leave you feeling. I have less benign intentions of course.

      • VanessaVaile  On March 11, 2015 at 11:45 AM

        I’m all for those less than benign intentions… just coming through another round of dealing with a vindictive [redacted] Twitter trolling not just me but a friend. I’m being silent — also with “less than benign intentions”

      • scottx5  On March 14, 2015 at 2:15 PM

        Silencing has so many forms. For me only the home care nurses believe my reasoning because they saw me after the last heart incident. Cancer corporation has no interest in my past nor are they willing to listen. Anything outside their magic forest is not even real to them.
        So, new tactic from the rapidly fluctuating decision generator. My first treatment at the satellite clinic featured a lecture from a male doctor who asked me if I had problems trusting people–they have a booth for that at Disneyland:-) I said I don’t trust male South African doctors and without asking why he wrote down “female South African doctors” and then spread this to the otherwise all female South African doctors who work in his clinic. A week later my female Oncologist in the city sent me a letter saying she was dropping me because trust had been broken.
        Yeah, I shouldn’t have mentioned the gender and nationality of the doctors who spent 5 weeks watching me die until I was able to see my Female South African Doctor who immediately ordered air-ambulanced to the city. This is the second time she’s saved my life. And new doctor being also FASD caught my cancer early and saved me a lot misery.
        So, I’ll ask that the doctor’s little “secret note” be found and destroyed. Fortunately, Leslie was there with me and heard the whole thing.
        Breakdowns in communication are one thing. People messing with what you said gets ugly.

      • VanessaVaile  On March 14, 2015 at 5:07 PM

        this reminds me yet again to take care of myself so I can at least try to avoid the medical establishent

      • scottx5  On March 14, 2015 at 9:38 PM

        Vanessa, some of this has to do with rural areas attracting less skilled doctors and reception staff. Talk to long-time middle-class residents who are accustomed to the crap and they notice nothing and are shocked by critical statements. Talk to First Nations people and it turns they see the incompetence very clearly as part of the racism they experience too. I chose my Psychologist because of her Plains Cree sensibilities. No BS invested in accommodating red-neck customs of bad service.

  • thesmallc  On March 14, 2015 at 3:44 PM

    Scott, I am sorry you are still struggling with this issue. Please know we are here to listen so feel free to vent at any time. I hope today is a better day for you, and that tomorrow is even better. Hang in there.

    • scottx5  On March 14, 2015 at 9:46 PM

      Thanks Rebecca. Starting be comfortable with the idea that impersonal service is the best there is available here and to learn how to live with it. Shifting my focus to the course feels like a good solution too. Do you occasionally feel like people need you to be someone else?

  • thesmallc  On March 15, 2015 at 6:48 AM

    Scott, yes! Many times I feel people want me to be someone else, starting with family members – and those are hard to walk away from (at least mentally. In my case, I blame religion.).

    I think one of the issues with people is self awareness. If your represent a “threat” to them, a “mirror,” then they aren’t happy with you. Most people would rather be in denial than to face their faults. They would rather turn the attention back to you. But it isn’t our job to change that. We can tell them how we feel but they are not obligated to listen either. Complicated world we live in, right?

    I’ve heard people say “accepting” how things are gives us a sense of peace. I always had a hard time “letting things be” but not anymore. The way I “accept things” now is by walking away from situations that make me unhappy or changing my focus. No, I am not running away, I am loving myself more.

    Once a situation becomes part of a “system” or a “culture,” it is harder to change. So we have to think of changing ourselves in order to survive the crisis.

    I hope you find peace with your situation. And you will.

    • scottx5  On March 15, 2015 at 12:32 PM

      Rebecca, good point about people not facing their faults. It seems everything I do is deficient and up for review–like Cultural Revolution in China where people were “theorized” in proper social behavior “we’ve gathered here to hear Scott confess his faults, repent, and then experience deep personal growth.” That said, I do leave things alone more often now (my younger daughter is training me on this) and rather than pick fights any more I’m going to phone the psychiatrist who helped me through the hospital stay in my last heart failure and get some fresh names to communicate with at the Cross Institute. (There’s no counseling, group therapy or other specialist services provided for medical patients outside the two cities in Alberta so this will involve a day trip).
      Hate to say this but with age comes the the acceptance that some people just eat your energy and aren’t worth the bother. I walked out on my first interview at the satellite clinic which has been turned into an obvious indication of “disrespect” which can’t be fixed because they’ve done nothing to earn my respect. Just being a bad doctor doesn’t count.
      This is a rough place to live and sometimes finding a balance is tough. The best tactic is probably to be indifferent and let things slide but I was raised to fight back and peace for me is helping others.

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