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?

Doctor’s Holiday Season

Appears I’m no longer to be considered a participant in my health care. No word from Patient Concerns and as expected the doctor tasked with answering my question on lack of communication has chosen to not talk to me at all. This has to be the strangest medical service on the planet here in Alberta. It’s so strange, the staff denies doing they are doing what they are doing when they are doing it. The nothingness of this state of being is leading to a numbness and disassociation that makes me feel unreal–not here.

Have an appointment with the family doctor Monday the 9th. Apparently there are test results and messages relating to my status as a human to be gone over. Since I’m not told in advance what any of this is about, I don’t think I’ll even guess any more. And does it matter? The 3 months on either side of Christmas are when doctors and specialists disappear. So not only do people who might know my history disappear. But since they really don’t know my history because they never talk to me, just issue orders, only they do hold the key to my files and when they go, the files are locked. Anyway, maybe it doesn’t matter if I have no files as no one reads them? Guess I’ll see.

Heard an interesting story about parents of very sick children who work out treatment chart for their kids to give to emergency room staff when they arrive at Emergency. No one touches the child until they’ve read the chart. It eliminates some of the frustration of explaining over and over what the child needs. Think I’ll do one up myself. My wife has spent many horrible hours being ignored by jackass doctors who WON’T look at my file.

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.”

Return to myself

Since all the changes I’ve thought up are negative and damaging to myself and others it seems to back-up to a more reasonable self–less reactive, more directed and yes, the type of approach suggested by people at the wrong time and should have known better I should have known better.

Had my colonoscopy finally and the results show no new tumors but an increase in potentially pre-cancerous polyps that were removed in the exam. So I’m cancer free for now!

Second news is though my body seems eager to provide opportune places for cancer to make itself at home, this also means I’ll be able to get check-ups on a yearly basis and the best part of this is they will be local. The doctor who does the exams knows how the system here “works” and told me to override the main clinic’s messed up communication strategies by keeping my doctor informed of when I want her to refer him. I can’t order the tests myself but can at least participate very close to directly. Plus I get my results prior their being sent to the main clinic who take weeks to process them and don’t even bother reporting if nothing is found. Their slogan is “no news is good news” which just doesn’t work for me considering how bad the line of communication is.

Final good news. Called Alberta Health to ask about communication policies for rural patients. Described the ongoing messaging failures and how this forces patients into crisis-only care and must cost the system a fortune. Received a follow-up call the next day and will be referred to a case-manager and may also get an interview publicly with the district health advisory council.

What I found encouraging is my notion that players in the main system lack a certain imagination gene cluster was illustrated by being asked if “it didn’t make more sense for someone in my precarious health condition to move to the city where there are better services.” Alberta prides itself on celebrating the traditional values of small-town life while admitting those values are not really worth much.

But anyway it isn’t necessary to go into difficult explanations over this. The system excludes the patient by creating a dependency on members of the system to perform their job and there are no back-ups because “everybody knows” the system works because there is no monitoring–and the circle closes on itself.

Another change

This changing my mind thing is a continuing feature of this blog (and my life) so if you’re tired of it stop here.

To avoid being treated like a useless nothing it came to me that I should detach myself as much as possible from the medical system and step one was to embark on an unscientific study of what happens when I reduce my meds to prolong the periods of time between trips to the doctor to get my prescriptions filled. I know this sounds stupid but going to the doctor has become a declaration of total failure of myself as a person. What other type of person would submit themselves to the care of  people who have no use for who you are–and in fact insist you admit your worthlessness and inability to understand the world to them personally and in a couple of cases have blandly pointed out that if I don’t like it, it’s no worry of theirs if I just walk away.

It would be paranoid to say directly that since there is only ONE health-care provider in the whole province of Alberta that offering walking away as an alternative is to say I’m welcome to go and die somewhere. That, well, does seem a bit extreme–even if it does feel like the truth. So lets just say these people are so tired of sickness and the way it twists a person around that they are no longer willing to “put up with it” and if you want help you’ll get the same treatment a clerk at a hardware store would give to an unreasonable customer. And accept it because that’s all there is.

Since I believe I shouldn’t have to debase myself in order to stay alive, my strategy was to detach but the prescription thing needs to resume. My heart, in spite being scar tissue, implanted valves and surgical mesh is still vulnerable to stopping and starting at will without meds. Strangely, headaches, ringing ears, dizziness and even arthritis in my hands and joints came back almost immediately. All of this is normal, but much enhanced by lack of medication.

So, always full of plans and schemes, the next play is to stay on the meds, endure the useless check-ups once every 3 months and pick-up my prescription renewals. The 3 month cycle is mandated by the insurance company that covers my medication costs and not based on some sort of care plan. IF I ever bother to bring up a problem there’s no time to investigate and if there are messages from my specialists that haven’t been lost, I always get them months too late to act on anyway. This streamlined scheduling has advantages in that I can substantially reduce the physical pain at a small investment of time while enduring the minimal amount of disrespect the system seems unable to resist delivering.

What amazes me is given the high level of training over a long period of time going into medical education, that being a caring person isn’t considered a necessary prerequisite to medical school. Sure, it’s a shame to turn away all that tuition money by rejecting someone who’s only limitation is lack of empathy–it’s a lot of money I hear. And maybe that’s the point? Medicine is just a business in the unique position of having customers who must put up with whatever service level medicine feels like offering? Add to this the pressures of work overload that medicine appears to value as a proof of expertise more important than care and it’s not surprising that medicine fails to support human needs.

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?

No doctors please

To late in the day to describe what happened beyond confirmation that stepping away from all but absolutely necessary contact with the medical system was a good decision. As usual, my doctor failed to do anything but the minimum with a letter sent from my oncologist. Letter was received and forwarded on to essentially the wrong place June 17. As I have mentioned, it was me who tracked the letter down after the doc’s receptionist didn’t have a confirmed appointment. And it was me who MADE the appointment for the colonoscopy I was ordered to have no later than mid-June to confirm I’m cancer free. Luckily it will be at the end of September which is quick for here.

Went to the clinic today to confirm my doctor knew of the appointment and she didn’t. While standing there (I wanted to see this) the receptionist called to make the appointment and then took credit for my efforts by announcing the date like she had done it all. Then she called home later to reassure me they are in control of things and ended with she thinks I worry too much.

So, the end of doctors for me. The only service she provides is renewing my prescriptions once every three months, and even there I was supposed to have a review before chemo started last September and another this June after chemo. So since this is the “best doctor in town” it will be no doctor at all.

Since the rule in Alberta is a patient MUST have a family doctor for the rest of the system to communicate with it may be I’m off the grid completely. So be it. This all started with me taking myself into the heart clinic in 2008 and being admitted as a “Walk-In” because my doctor at the time didn’t even know there was a letter on her file saying I urgently needed open heart surgery. And even after three more surgeries I’m still listed as a walk-in to this day. NO doctor has ever helped me, so goodbye doctors.


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.

Thinking about why I’ve become so reactive to what amounts to being almost non-existent as a patient, I’ve wondered why it should matter. Attention from the medical system has never been a sign of happy times so why complain about being ignored? (“Complain” is now the new designation for anything from gentile suggestion to outright and justified critique–the word reduces everything to selfishness on the part of the person speaking out and reduces any cause of harm to the role of the actual victim).

Anyway, in spite of the fact that again my doctor’s office has failed completely to do their job, I’ve managed to book my yearly exam myself. Four months late, but it’s done (as much as anything can be relied on here) and booked for Sept 28. Another win, the Cancer Institute now calls me to confirm missing appointments and feedback from my doctor. In fact, they even call when my oncologist’s assistant doesn’t pass information across the hall to them, as just happened. So in spite of there being no actual care exhibited by anyone connected with my “case” there is one persistent person who calls ME to ask if I’m getting the things her chart says I’m supposed to get. This is like the closest I’ve come to continuity of care here. Even my cardiologist, who said I’d need more surgery after chemo has forgotten me–so this is progress.

My next adventure was calling the Alberta Health Community Engagement “Get Involved” office. They advertise they are looking for feedback and community input. Called during office hours, answering machine and no call back in 3 days. Did follow up with an email… Still, one person in the system knows me.

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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