Tag Archives: cancer

The non-reply

Have been taking a course Creativity for Learning in HE and it has me thinking about an alternative to living in illness. Can reality be changed by reinterpreting experience? Or is this about reclaiming responsibility for my health by disassociation from the health care system that dangles me over the edge and tortures me their claim to caring?

Been in contact with patient relations a few times recently in an attempt to get something of myself back and this needs to stop. It isn’t healthy and is NOT going to get better. To them I exist in a sub-recognitional space below being human. Though curiously afflicted by human physical failings (that can be fixed) I throw off an expectation of deeper needs as if I misunderstood the limits of their expertise and spoiled their immaculate self-image.

Amazingly, it had never considered how fragile the health care system apparently is. Not just imperfect and hiding from it (I myself am imperfect and resist the notion too) but in the deep confusion of caring while not permitted time to care. This causes a break when you have to discard the persistent contradiction gnawing at you and cross over to a robotic operational presence. A freedom to release oneself from caring in order to survive is a sad thing to watch and (selfishly/) a kind of reverse cruelty to point out, even when they are killing you. That doesn’t sound good but what can be done? You learn to survive the system that has you when you are most vulnerable and don’t poke the machine.

So this sounds like nonsense? Well what I deal with daily is destructive SENSE and a cross over is in order now. I requested the reply from a doctor at Alberta Health concerning the repeated failure of the system to get messages to me (and of course the extended periods of worry and illness) and received a mechanical description of the process of chemo-therapy for people in my condition (not me, but a condition detached from the person that in fact was inaccurate anyway). To finish this off, my request to have a written copy of this reply will require the doctor give his permission for me to see what he said in reply to my question. So not only do I not qualify to interpret my experience as I witnessed it, I’m not allowed the simple right to ask a question.

This is where I’m going with my journey:

Partial definition: Salutogenesis is a term coined by Aaron Antonovsky, a professor of medical sociology. The term describes an approach focusing on factors that support human health and well-being, rather than on factors that cause disease. More specifically, the “salutogenic model” is concerned with the relationship between health, stress, and coping.

Antonovsky’s theories reject the “traditional medical-model dichotomy separating health and illness”. He described the relationship as a continuous variable, what he called the “health-ease versus dis-ease continuum”.

And a Quote on Sense of Coherence:

“a global orientation that expresses the extent to which one has a pervasive, enduring though dynamic feeling of confidence that (1) the stimuli deriving from one’s internal and external environments in the course of living are structured, predictable and explicable; (2) the resources are available to one to meet the demands posed by these stimuli; and (3) these demands are challenges, worthy of investment and engagement.”

Progress

Managed to get in touch with the Alberta Health “Patient Advocate” last week. She even phoned and spent a half hour listening to my concerns. If you add up the time spent talking to a doctor over 2 open-heart surgeries, cancer surgery, an abdominal aortic stent operation and tumor removal, the total speaking time would be about an hour. Does this mean anything? Well first time someone on a patient contact hasn’t hung up me in years. I also have one place that accepts email messages and replies. No doctors I try and contact take email messages, none reply to phone calls, and even registered postal letters don’t return the receipt tab.

The advocate was quite pleasant and said she will “report my concerns to the Ministry of Health” but can’t reveal when, where or who so I think another effort is into the garbage. I found it completely strange that the medical system is so devoid of human contact. If I was that unresponsive I’d be declared dead–but I did die last time and this all zombie dreamin’?

Next step is to volunteer for the Lakeland Communities Health Advisory Council. I sent a query email about membership and will attend the next meeting reply or not. The district they cover is quite large, so it’s long drive to the meeting, but I think it will be worth it. At some point a person needs to break the isolation. The medical system itself is hard to access and even though my doctor’s clinic and the hospital are both a 5 minute walk from my house, neither provides any useful services. In fact, the County Home-Care Nurses are the one’s who keep me alive and actually know about medical stuff. So I’ll see what is up at the advisory council–I suspect it’s more useful than it sounds.

Some of my decisions to become more active come from reading “The Untethered Soul, the journey beyond yourself” by Michael A. Singer. The book is a kind of essay on how your mind works mixed with practical tips on holding your spirit together. Though it may seem obvious to seek medical help from medical systems, I’ve found here that the medical people are too detached from their JOB to actually provide help. They themselves know this but can’t admit it.

A note from me

The branch clinic oncologists have been quite successful at sustaining my low opinion of them and now that the Patient Concerns person who represents the whole Provincial institute has shut me down I’m going into no-speaking mode. They want me to be silent, “respectful” and submissive and do it by constantly judging my comments, “correcting” my understandings and shitting on my feelings, so shut-down time.

I really have the sense that it is institute policy to decouple feelings from treatment. All their offices are lined with posters telling you you need not “go through this alone” but everything about their behaviour makes you feel wanted only for your disease and mocked for your weakness as a faulty human–well, not human, patient / module.

After months of “care” it’s obvious no change is on the way so I’m printing up the following note to present at each appointment. Have left space at the bottom to fill in the answers to the symptom list they go through at each treatment and will respond to spontaneous with post-it notes to stick in my file.

To my medical care-takers.

Recently I’ve noticed that my conversational style and descriptions of past personal experience appear to be both irritating and understandably irrelevant to my receiving care in the present when those things are not happening. Also as noted on my records, I apparently have used up most of the time allocated to my being interviewed anyway. In response, it is now my policy to try and anticipate questions and submit answers in writing on arrival at the clinic. Further questions will be answered in brief written form by small notes.

With my not asking questions or engaging in unnecessary historical narratives I expect this will speed things up considerably.

Scott Johnson

Spinning Wheels

This all started with an interview I had while in the middle of being extremely sick from my early over-strength chemo doses. Weeks of vomiting and diarrhea had emptied me of all my heart and anxiety medications and I was in bad shape and emotional. Also I had repeatedly called my oncologist for help and received no replies (she never has called me and dropped me as a patient months ago).

Call from the Patient Concerns office at the Cancer Institute (CI) yesterday. I had thought this office was a neutral arms-length mediation service but it’s just an internal fix-it service. The gist of the conversation focused on my being “rude” on the phone and in person. This is apparently new definition of worthiness to be treated as sick, good manners. The secondary operational directive is that any damage not directly done by the staff at CI is irrelevant; as in my dying in June 2012 from incompetent medical care is taken as an unrelated disappointment in the remote past that bears no relation to my current state of mind. (This is an expression of a common contemporary belief that all hurts are get-overable by normal people with attention to a proper diet, an astutely accessorized wardrobe and a kind of modern mental blankness that feeds on slogans and policies instead of empathy. All pain and suffering are minor Boo-Boos to be kissed away–not to be “fretted over” like some sissy).

So now I’m back to being nowhere with more unjustified “complaints” added to my record to further silence me. On the bright side I have a few more tip for the “What made you think we gave a shit about you list.” The application of logic and reason in cases of distress are intended to diffuse and calm an emotional situation. Proper application of this variation on Mommy Talks to Little Timmy speaking style can successfully convey a sense of superiority and unconcern that puts people in their place while also imitating good advice. Since medical science is largely all about arranging people in proper relationships with their squishy-bits for optimal functionality, Timmy Tips are, as they say, just what the doctor ordered.

More seriously, my ability to navigate the spoken environment has deteriorated to almost nil since my last intensive care stay so I’m going silent at all doctor interviews. In the city I can take my Daughter as my voice. Alternately, a notebook will serve. Too bad well educated people can step on people without consequence but that’s the game:-(

 

Start again?

Stopped blogging about my cancer because I find the role given me by cancer and the industry it supports is to be voiceless, compliant and weak. I’m told appreciate poor service, lack of communication and the kind of dismissal complainers receive even when I ask simple questions about my care. But the worst is to be taken as some crazy person who misunderstands the world.

Since I gain no strength or support from the system–only sickness and dismissal–it’s confusing why even bother with this shit? And the answer is that a person learns from every experience, good or bad and nothing is gained by silence. This is what I’m given so maybe writing about it will help.

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