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.

Not Easy Yet

Last week we visited my younger daughter and went out for dinner. It wasn’t fun and even though I’m done with chemo and clear of cancer the fact is I’m twisted up inside and damn tired of being told to “get over it.” Or the latest, “we’re all sick of you feeling sorry for yourself.”

I don’t know what to do about this beyond not sharing this blog and the rest of my life online with even my own family, especially my younger daughter. Her advice, impatience and judgmental attitude isn’t welcome anymore. I’m not the person she wants me to be–too bad.

My wife, on the other hand, at least has a friend who had cancer and now understands a bit of why I’m still a mess. This helps take the pressure off but you know the depth of experience from two heart failures caught at the last minute and the just done cancer is not something I SHOULD get over. More on this later.

On a related topic, Rebecca Hogue at Cancer Blog Mentors is doing a survey that needs to be done really soon. This blog is hardly good advertising for the restorative powers of blogging but slowly it is working for me. Details below.

Blog Impact Survey – a Reminder

Hi everyone,

Just a quick reminder that I’m doing a study on how breast cancer blogs impact those whoread them. There is little or no research on the impact of blogs have on the readers of the blog – more is done on the impact to those who write them.

So if you are reading this now – please take a couple of minutes to complete the survey. The more detail you include in the written parts, the better.

Here is the link: http://fluidsurveys.com/s/blogimpact/

Thanks,
Rebecca

Change

This blog inspired by things said by Rebecca Matos at her blog http://thesmallc.com/2015/04/09/to-ignore-or-to-educate-that-is-the-question/
And Maha Bali’s blog “Pushing: A Matter of Perspective & Faith”
http://blog.mahabali.me/blog/uncategorized/pushing-a-matter-of-perspective-faith/#respond

Illness isolates us, we withdraw from the normal social exchange, become more fragile and when we try to explain the hurt raises up and chokes us or comes out in an emotional over-reaction.
Things are coming up in me as I wait for the final word on whether the chemo worked. And since the decision on whether I needed another heart operation depended on being rid of the cancer there’s going to be another wait of unknown length for the cardiologist to contact me–she frequently forgets me and even showing up by air ambulance doesn’t get her attention.
All this deciding by others that doesn’t include me is further isolation I know will be made worse when I finally go to the appointments and face the bland normality of being “cared for” by agents of an institution that could as well be a place where misfits are tortured until they give-in and promise to be suitably reduced to unfeeling objects.
Rehearsing what I need to tell them it becomes clear I will say nothing. What can be said? They have treated my cancer only (same with my heart). Who I was / am before and during my sickness is beyond their job description and for their purposes behind a wall of caustic remarks designed to scrub me from their thoughts. “You seemed satisfied.” “You never mentioned this before.” “Your past experiences are to be gotten over and have no bearing on your treatments here.” On and on meaning only “We don’t hear you but no matter because we know best what you need and if you would just get over being a person we’re sure you would feel much better.”
I realize this all sounds like feeling-sorry-for-myself stuff but it’s part of a rebuilding process to reclaim myself from the judgement and disrespect that’s been my life since 2007. Recently a friend recommended “The Will to Change: Men, Masculinity, and Love” by Bell Hooks and though I haven’t received the book by mail yet my thoughts are on change and also isolation as the price of survival as a person. Not a happy choice.

The upfront price is to stay away from the medical system except in dire circumstances. This sounds a bit crazy but the medical system here doesn’t work for rural people and depending on it is as likely to kill you as staying away. People who don’t understand the dynamics of the failed systems  here suggest I try a different medical team. It’s perfectly logical and meant to help except that option is closed. There is only one clinic in town and all but one of the doctors there didn’t participate in standing dumbly by while I died of heart failure right in front of them. This happened at the one hospital in town that they also are the only staff for. There is only one cancer clinic for northern Alberta run by the one organization that serves all of the province. All the care outlets originate from from this one provider and they don’t talk to me by any means beyond appointments where there’s no time for chit-chat that doesn’t involve  praising their magnificence. Same with cardiology except they forget about me except for a yearly call to see if I’m dead yet.
So my choice is do I rely on people who not only fail me but are also intent on treating like a piece of garbage or do I reclaim myself and leave them behind? Right now my choice is to not study their abuse any more. I want my life back.

Inspiration for my Blogs

As mentors over at the Should I Blog? mini-course on blogging for people with cancer we’ve been asked to reflect on what inspires us to write out our thoughts and experiences.

This a tough one for me as I feel nothing inspirational about my treatment as a rural cancer patient in Alberta, Canada. All I feel is alone and cut off. In fact, my emotional response to the machine called “care” here has gotten me pushed away form what minimal services are on offer, so I’ve just gone silent.

One of the worst comments I get is some variation on “these people are wonderful and you are the only person to EVER complain about them. So now I can add “ungrateful”, “mistaken” and by implication, “unworthy” to the list of my failings as a human.

I wonder if people realize how incredibly isolating it is to tell someone their perceptions and feelings are mistaken? Or to reduce a sick person by judging their manners as unacceptable when they are desperately asking for help?

Now I hear people protesting that not every person in the cancer industry is uncaring and hard. Fair enough, I can’t claim hurt by being labeled as a person who throws around generalizations without saying I also know there are good people on my care team. But I do claim the right to be treated as a whole person.

What inspires me in an odd way is how people enact imaginary roles and are unaware of how disconnected from reality THEY are. Writing about this helps me understand things that are not exactly happy things but puzzles that could swallow me right up.

 

 

 

 

 

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:-)

Leaving

What’s it like to leave a group? Quit membership? Give up defending yourself?

Sometimes you can’t be understood no matter what you say because you are inarticulate, tired of explaining yourself, won’t play. And you get too comfortable and need to drop that comfort. Or maybe you never belonged and have been fooling yourself?

Over the last 6 months I’ve been labeled “rude” to the point threatened ejected from the only cancer treatment center available to me. Because I was too sick to explain my anxiety over not being told anything about my treatment I insulted someone in a place of power who could hurt me. And they have. My crime? Walking out on an interview where it was obvious the interviewer had no interest in hearing me because in their imagination there was no possibility that the system they represented could ever fail someone. Since it couldn’t have happened, it follows that I was mistaken and an unreliable witness to my own experience. Erased as a person my only recourse was to admit what happened to me didn’t occur and apologize to those who have no room in their understanding anything outside a world as they are privileged to define it.

For 6 months I’ve been in pain, sickness, disorientation and disallowed from asking for help because the condition that I give up all of my self to be someone who has the power to understand my world as it suits their own illusions. Tellers, not listeners, these people live by shaming you, by never having anything but the best intentions, the purest of motives and NO awareness that what they say denies the voice of others. UN-reflective and full of suggestions that others are so mistaken while they are so right…

I’ve had enough of this sanctimonious certainty. Challenging mythologies has a price but ultimately it isn’t about being right or justified–you just can’t give up any more of yourself.

 

Different

Back from a very stressful few days in the city. Event one was an appointment to see my Cardiologist about the slow growing aneurism in my heart. Scar tissue from two previous surgeries to the aortic valve have slowed its progress so this was a follow up after an exam in mid-October. Three hour drive on northern Canada roads in January to get there only to find the appointment had been cancelled without telling me. Plus the cardiac clinic is so booked there was no one else to see me–too bad the system has no awareness of what this does to people and their families with chronic health problems. Communication failures are 100% common so it’s back to phoning before appointments and understanding that there is no one to look after you, so you better be tough or you die.

After that screw-up my appointment with the new Oncologist happened the next day. She’s a nice person who answered questions to things I’d never been told because my assigned oncologist quit, my family doctor is never available and people who “treat” me at the branch clinic DO NOT answer questions. It was a nice interview that resolved nothing as I can’t be treated at the main clinic because it’s six hour return drive with the blood test one day and if my platelets are good, chemo the next. Since I usually don’t pass on the first try and you don’t know if you passed until the following day, each treatment “day” involves 4 long days for two of us plus 12 hours mid-week driving.

With the rural service I can get blood taken in the morning at the hospital a few blocks from my house on Tuesdays and know by 3:00 PM that day if I “pass” and if so I only lose one day to driving and infusion on Wednesday. If not, it’s back to give blood the next Tuesday and only an hour lost. The people at the main center are nice but are set up for locals only and make it very difficult for someone from out-of-town to be treated.

This is supposed to be a Provincial medical system but city and country services are not comparable. At least in the country I know my treatment will be sloppy, unprofessional and performed by people I don’t trust or like. But it beats city people who are the same type with better manners who will kill you just the same.

At least now that we’ve seen my new Oncologist it’s obvious the whole idea of trust is an illusion. Medical people I deal with are technicians and being a person just isn’t part of the game.

Always Apologizing

Today’s blood test showed my platelets were too low. For a normal person the counts are good but because my heart leaks I need to have as much clotting ability as possible. Not that I “know” what is up with my heart, my cardiologist sends reports to my doctor who either doesn’t pass them on or is on frequent holiday and I can’t access her messages until she returns. Can’t get past the cardiologist’s receptionist either. Do here snippets of my condition when I see other doctors and they makes comments like Sunday in emergency when I found out the left side of my heart is dangerously enlarged. Or the leaking thing heard from my lung doctor. Worst is everyone thinks I know and drops them on me with no warning.

Anyway no chemo tomorrow so the note is pointless as I need to talk on the phone to the nurse who will reschedule me for possibly next week if my platelets are good. Except I’ve been warned my nurse time has been excessive and I just don’t want to hear the bitching so I’ll skip next week as it coincides with a visit to my seldom seen cardiologist to get the last year’s news on my heart and maybe see my new oncologist. Though it will probably cost me all the rest of my care points it would be nice to know if they plan to test me to see if the 8 rounds of chemo so far has had any effect–testing to see if the treatments are working apparently isn’t part of the service. Also, since no one from the main clinic has been in contact since August 13 it would be cool to know if they are still into cancer stuff or sold the building.

All this is going to cost me loads of apologies for being a needy inconvenience, a resource hog, unreliable and unappreciative. What a mess.

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:-(

 

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