Tag Archives: silence

Be here, maybe

Edited from my original because I’m angrier today.

This is a reply I was going to leave at the smallc blog by Rebecca Matos but I am in a pissy mood and don’t want it to seem like I’m mad at her. You will have to read her blog for this to make sense. Don’t be lazy, do it!

The gist of my message is that though specialists are hired for their ability to focus and bring expert advice in order to save the patient’s life, I think they should extend some effort to know something of the patient. If they want live in a sterile glass cubicle and shoot diagnostics out their ass all day, then fine. But I would propose that as a witness to some pretty catastrophic health events they need to be accompanied by someone who notes the human dimension. My doctors and specialists hold my life in their hands and don’t know anything about me. In fact they go beyond non-recording to fictionalizing aspects of my personality when in extreme stress, and then claiming privilege by their ranking in the system.

So not only do they write the public account of my illness, they get it wrong. So to be clear… Well I’m upset…

To an extent I agree that the oncologist’s job is primarily to keep us alive. In my particular case, the answers received were from an oncologist who had no connection to my treatments and was obviously reading back from a list of standard procedures like the mechanics do at when you go in for warranty work. The only indication the answering oncologist was talking about me was a mention of contact with my cardiologist on the concern over how the aneurysm in my heart would react to the chemo. A question never answered until after the chemo was done and after 8 months of feeling like my heart was failing. That lack of feedback seems to be a hallmark of treatment here. It’s part of the institutional structure of disrespect for patients and definitely made way worse by my living in a small rural town.

It starts with there being nobody to fill the role of GP here. If you have a chronic health problem, well too bad, there is no continuity at all. My doctor sees me once every 3 months to renew my prescriptions, take my blood pressure and very rarely pass messages from the specialists. She’s a nice person but has lots of patients to see so 10 minutes for an appointment is the max. I don’t see her when I’m ill because it takes weeks for an appointment (if she’s even in town), so I go to emergency where, they seem to know me better but still I’m an incident in the shift log, here and then gone.

My cardiologist is potentially available but since she missed my second heart surgery she seems to be unaware of my case and it’s almost certain I’ll never see her again. Anyway she disappeared after my first heart surgery and with no continuity at her end or mine, my first implanted valve went un-monitored, came loose and tore the top of my heart to hell.

Then we have the original oncologist assigned to my case quitting over something I said and it isn’t my business to know. Yeah, I might have said something in those weeks after my first chemo. Felt like my heart had blown up again and I lost almost 35 pounds in 3 weeks and couldn’t get anyone to understand–though I DID get a reputation as a rude, verging on abusive person and had “services” and contact cut even more. It took months to find out oncologist #1 had been replaced and I have no real connection to her. Saw her once during chemo where I took someone to speak for me and my concerns were erased by small talk and the obvious message that fuck all was going to transpire.

Not sure, but it seems to be bad form to do everything possible to reduce a person to an invisibility. Who are we that don’t have stories? Why keep us alive?

The complications of not playing their way

So I’m leaving my current family doctor–that’s what the specialists call the person you signed up with to be “your” doctor. Usually local, provides continuity of care, knows your case, your history and presumably advocates for you. This person is the go-between with other medical people and manager of your health care needs. In addition, this person is needed by distant specialists to be their representative by receiving and acting on their directives. In also if tests are needed this person will perform them or order them done, specify the needed procedure and process the paperwork back to the specialists in a timely manner. That’s a lot of things to do for one person but it’s a controlling system that that values its self-image over the needs of the customer (no sense pretending we are patients or even of interest).

From the list, my family doctor renews my prescriptions and is too busy for the rest–even if she knew there was a rest in my case.

So after confirming nothing had been about my yearly cancer exam and simultaneously being told I “worry too much” by fd’s receptionist, I have quit.

Plan A was to call the cardiologist and oncologist to please stop sending requests for action like tests or appointments to my fd and send them directly to me instead. Neither of them can do this. System rules are ALL contact with the patient is done through their fd–no exceptions. Except, when between fds and as a temporary measure I can call the specialist when I guess I probably, might or might not feel an appointment may have been booked without my knowing it. Of course I can’t book any appointments myself, issue prescriptions or be notified of anything already because “your family doctor will do it.” Or not.

So there it is, no fd, no more medical. In a way this doesn’t matter as my cardiologist is totally absent from my life, always has been. My abdominal aneurysm surgeon disappeared before my first check-up with him to confirm the stent was still in place. Skin cancer guy took samples, reported they were malignant and then evaporated. My oncologist says I’m on “close surveillance” after chemo but I can’t be watched without an fd, so that’s a bust.

Next step is to do the late yearly exam and then I’m done. Have already started tapering on my medications because there’s no way to access them without the fd. Have about 2 months supply left that I can stretch out over 6 months. The withdrawal on a couple of them is rough but they are all heart meds and my heart is already half scar tissue, half surgical mesh and the existing aneurysm is stable. So as my pressure goes up, I’ll be able to adapt–or not, who knows?

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.

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.

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:-)

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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