Walk away

This posting just doesn’t want to start. I’m tired of my problems with the medical system and have to rethink everything. Here’s what I have for now.

Been having trouble blogging about my cancer experience I think because rehashing the emotions I went through were not resolved. They keep coming back as strong as ever. Every time I relive the memories the shut-down and rejection my so called care-givers repeated month after month returns.

What to do?

First I’m seeing a psychologist not associated with the Cancer Institute. They apparently offer counselling services in the city (3 hour drive each way) but nothing closer. And why would I trust someone associated with a system that did everything they could to diminish my sense of self?

From something my friend Rebecca Matos said at her blog the small c about “culturally disturbed people” it feels more natural to understand myself as a misfit or a freak. I know a lot about what it feels like to be sat in the corner and shushed, but since it’s my word against the clearly more qualified professional care givers my only option it to accept that I don’t belong and stay away from the medical system altogether.

It’s a shame that in a place where every doctor’s office features posters announcing support services there isn’t a disclaimer about how they don’t apply to everyone.

My second activity is to continue studying what a working system looks like. It might happen we could move from here to a place where it’s safe to depend on medical services or to even be sick.

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  • Maha Bali  On July 9, 2015 at 4:15 PM

    Is moving a real option for you?

    • scottx5  On July 9, 2015 at 6:14 PM

      Hi Maha, thanks for the comment. To the subject of my walking away from the medical system, I think yes I can. Aside from my family doctor all the specialists lose track of me as soon as I walk out of their office. The constant insult of being treated like nothing is causing more illness, not less. These are people I’ve learned to not rely on. Being dependent on them extends trust to the point of living in a fantasy, plus it enhances the hurt when they, predictably, betray my trust.

      I have a bad heart with a visible aneurysm I was told would need open heart surgery after chemo. Chemo has been over for a few months and I had to phone the cardiologist to remind her and she said she was pretty sure it was now OK but to be sure she would have the surgeon check out my scan when “he wasn’t busy.” No word from him. Plus when chemo was finished no one at the clinic even said goodbye–8 months and they never noticed me? And at my discharge the replacement oncologist announced that they had cured me and wasn’t I happy? Being invisible, why even show myself to them?

      Either I’m unqualified to be a patient or they don’t know doctoring. Does it matter which it is? Off I go on my own.

  • thesmallc  On July 9, 2015 at 7:36 PM

    Scott, I feel bad about your situation and I am sorry you feel isolated. It must be so difficult to deal with people who cannot commit to their jobs, after all, this is the career they have chosen for themselves. So not only are they failing our society but they failed at their career too.

    I agree sometimes it is best to walk away. I hope you can find peace through acceptance and that you are able to create meaning — sometimes we can’t find it in situations or in people so we must create it ourselves.

    • scottx5  On July 9, 2015 at 8:36 PM

      Thanks Rebecca. I’m not sure these people even realize what they do to people. They have large egos and ironically their type A personalities are probably responding to my type A challenge to them. They are taken aback by my refusal to accept their phony gestures as genuine concern. It’s OK that I don’t fit, mostly I never have.
      This is a bit risky as all medical care is provided by the Province. That means there are no other alternatives for cardiac or cancer care so if I need those services I’m done. My life, not theirs to play with and the last heart incident lasted 5 weeks of degrading misdiagnosis to end with me dying in the hospital ambulance bay. Time to stop playing chicken with these people.
      Have you read “The Primacy of Caring: Stress and Coping in Health and Illness” by Patrica Benner and Judith Wrubel? Wonderful book on what medical culture COULD be. Time for me to study that version and leave this broken system behind. Also bell hooks wrote a book called “Belonging a Culture of Place” that I’m meaning to read. You’re right about creating a world for ourselves.

      • thesmallc  On July 10, 2015 at 6:05 AM

        I haven’t read “The Primacy of Caring: Stress and Coping in Health and Illness” but would love to check it out. Thank you for recommending.

        Like you once said, we all have the seed of survivor in us and I think you will find a way to cope and feel better about things we have no control over.

        Good luck.

      • scottx5  On July 10, 2015 at 9:53 AM

        Rebecca, physically surviving in this place is a challenge. People who live in rural areas here are out-of-sight, out-of-mind. “Modern communication” virtually doesn’t exist (I have to communicate by postal mail with my oncologist and get rude responses from the cardiologist’s receptionist when I phone so my only real access to care is to have my doctor contact them and she’s away about 50% of the year). It’s like trying to contact the Wizard of Oz, us Munchkins are not even allowed to THINK he might be available to the rabble, let alone to approach him without permission:-)
        In reality, I certainly could play the all-respectful Munchkin role but it eats at my soul to first have to debase myself. So the trick is, like you said, to shed things we can’t control. Being made helpless is a strategy for promoting illness, not health.
        Primacy of Care is not an easy book, there are important things in almost every line. I find it to be the story of the world where humans have finally realized their potential. A world without blaming and judging. The authors say that “caring has possibilities” and we all need a place like that.

  • VanessaVaile  On July 10, 2015 at 2:28 PM

    Scott — we believe you. I always have — and have been experiencing rural isolation, fortunately without yet needing the medical system. At my age that prospect scares me. I saw how the NM hospital handled my mother’s refusal to accept a not dissimilar attitude.

    • scottx5  On July 10, 2015 at 4:47 PM

      Vanessa, was talking to my doctor this afternoon and told her the story of how my cardiologist for 3 years hadn’t been told I’d arrived mostly dead just down the hall from her office. Spent 2 weeks recovering in the ICU she attended the whole time I was there and never saw me. Took 5 weeks after I checked out for the message to get to her. So now we have a bet that my 6 month “regular” check-up with cardiology is or isn’t missed. My advantage is over 6 years of care only one appointment has been booked for me and that was for my first open-heart surgery that took 3 months to get to me. If I wasn’t on the “urgent watch list” I would have missed that one.
      These people don’t actually have a clue and it’s up to the patient to humor them. After a certain period of self-congratulation people lose track of what they actually do.

      • VanessaVaile  On July 10, 2015 at 10:49 PM

        Scott, I’m in the process of moving to Yuma CO with my daughter, her husband and children. Thinking of you, healthcare was the firsldt thing I checked out. I’m cautiously optimistic.

        Or we could just watch George C Scott and Diana Rigg in Hospital again…


      • scottx5  On July 10, 2015 at 11:53 PM

        Vanessa, I think we drove through Yuma once, didn’t meet any doctors though. The screw up in Alberta medical services is at least in part due to the same political party being in power for 44 years. They starved and redesigned the system over and over to make the socialized aspects of it into a free-market wet-dream. Now with a new and different government people are expecting change but my estimate of the Albertan mind is nothing will really change. There is a plan to finally build a new cancer center in Calgary and I’m thinking of sending some unasked for advice to the new Minister of Health. Thing is, progressive or not the Alberta myth is the independent lone cowboy bursting with “country” values but us real-time country folks know this is bullshit. My secret is to have one reliable person in the system and I’m almost one quarter way there. Good luck with the grand kids and don’t get in any gun fights without sunscreen on.

      • VanessaVaile  On July 14, 2015 at 6:59 AM

        Eastern Colorado, not Arizona — no OK corral. I’ll wear sunscreen when I go out in the wheat fields

      • scottx5  On July 14, 2015 at 9:12 AM

        Well I still know Davis is somewhere near Oxnard so all isn’t lost. There’s a town mid-Vancouver Island that used to have the biggest China Town on the west coast called Cumberland that the residents re-named Dodge City. It get confusing. Will look Yuma up on the map. Rolling foothills?

      • VanessaVaile  On July 14, 2015 at 4:35 PM

        flat, wheat and corn fields. think less Colorado — more Kansas (40 mi to the state line)

      • scottx5  On July 14, 2015 at 7:24 PM

        Lived in Taft for a summer and it was flat with hills in the distance south, east and west. Here we’re at the south edge of the Boreal Forest and top edge of the prairie.
        My caregivers at Cross Cancer Institute called Monday to ask if I’d had my yearly colonoscopy (something you don’t generally forget). I said no and they said my doctor was notified 2 months ago to book one for me. I’d seen the doctor last Friday and she didn’t say anything or see anything on her file so mentioned it was common for reception to lose things at the busy (and only) clinic for 50 miles. She didn’t believe me and said she her imperial self would call the doctor to call the proctologist and so on. Since I was TOLD not to call anyone, ever at the Cross I do hesitate to intervene but might track the weeks or months until I hear something.
        One thing to look for in a clinic that causes me all sorts of problems is internal communication policies. Because each doctor at the clinic is in individual practice, none of the other doctors know anything about me add in that the staff don’t communicate and if you don’t actually stand in front of them you are forgotten. This is bad news if you have a chronic condition.
        Good luck on the move–guess if it’s flat you can leave the skateboard behind?

  • thesmallc  On August 9, 2015 at 10:22 AM

    Hi Scott, I am just checking in to make sure you are doing well.

    • scottx5  On August 9, 2015 at 11:35 PM

      Thanks for stopping by Rebecca. We were away seeing the grandsons–it was a good trip. Looks like walking away will be easy. My surgeon was supposed to do a one-year check up on me two months ago but is on maternity leave. My doctor wrote a letter to the original person who diagnosed me and I also called his office. No reply to the letter in about a month and no reply to my phone message.

      Very weird to live in a world that loses track of you over and over. But it’s also an opportunity to be my own self and let the world take care of itself. Got an offer to do some volunteer research for the town museum–sounds really interesting. I’ll visit your site soon.

  • thesmallc  On August 10, 2015 at 6:16 AM

    Scott, I am glad everything is well. I am sorry the lack of attention from your medical team continues. I wish there was something else you could do. Please try to rest and take it easy. The volunteer job sounds interesting — I hope you get involved. I always say being busy helps the mind. Stay well, Scott.

  • thesmallc  On August 27, 2015 at 8:42 PM

    Hi Scott! Thought of you when I read Beth’s latest post about being dismissed by your medical team. I hope you’re doing well. http://bethgainer.com/aging-ungracefully/

    • scottx5  On August 27, 2015 at 10:11 PM

      Hi Rebecca, thanks for the thought. Left a comment at Beth’s Blog that I hope doesn’t offend her. Since my doctors are consistently unavailable I’ve had to stop thinking of them as “support” and build an alternate system. The fact that I’m alive is all the proof the medical system needs to feel good about my treatment. Having lived for years with curable illnesses, then being left to die and these fools want some sort appreciation from me? I know I need doctors but how to remain a person around them is not something they seem to care about.

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