Zero Expectations

Time to give up on communication among doctors being passed on to me. Had thought the fancy Cancer Patient Navigator thing would keep me in the loop but it seems she’s so low in the hierarchy, she has less influence than me. And since the medicos at other levels are apparently under orders to never be in contact with me the outside the controlled environment of their office. Where their scripted assurances which vanish like smoke when I leave their presence. It’s drop expectations to zero and ride the shit out on my own.

I believe it will actually be healthier not to bother these “care givers.” Talking to them makes me feel belittled and at fault for having concerns. They break every promise they make and seem entirely unconcerned–how do you deal with people like that?

Some solutions:

Go back to male doctors, females are powerless and daring not to assert themselves make up though-girl stories to make themselves feel powerful but do me any good. To me their stories sound like promises but they aren’t and I get punished in feeling belittled and lied too.

Men may be dumb but at least approachable. Their stories are more transparent and less hurtful because a person need no invest trust in their obvious bullshit. This is way more reliable to me. I can see into the BS and this prevents it from being “personal” which hurts a lot less.

Women are adept in organizational fantasy worlds where everything is a giant game of pretend. Men have other fantasies and self-delusions and maybe I understand them better? When it comes to living or dying it’s better to trust no one–and that’s all it is?

Of course, these are all generalizations but I’ve used up my more reasonable beliefs being sick, fed chemo that makes me sicker and then asking for help and apparently being deliberately ignored.

Silence

Rule one of medical service: do not transfer to another clinic just because it is “convenient.” Once you are out of the city, you are out of sight. I transferred from the main Clinic in Edmonton to a smaller but closer satellite clinic and this means NO ONE returns your calls including your assigned specialist, your Cancer Clinic Patient navigator, the Cardiologist in charge of making sure my chemo doesn’t do too much damage to my heart and even my own doctor.

After my second chemo cycle it turned out my platelets were too low which increases leakage in my heart. Then my blood pressure dropped (to the point of falling down as my legs folded under me) last week so I’ve stopped  on advice of the triage nurse and am withdrawing from them. Blood taken today had too low a white cell count so no chemo until possibly next week. Because I don’t have chemo I don’t get a consultation so I foolishly called the Oncologist whose assistant promised a call later today which didn’t happen. And I’m betting won’t happen tomorrow unless it’s soothing bullshit and a suggestion to go away until they are ready to see me.

So this is how small town chemo is done: if the last dose hasn’t destroyed your ability to clot blood or crashed your immune system you get your regular each 2 weeks dose and start the sickness routine all over again. Since no one calls you to tell you if the dose has been adjusted, your next treatment might or might not happen pushing your 2 weeks cycle to an unknown, delaying the upcoming heart surgery and unraveling your life.

The medical system, like education, is based on face to face contact. If you are as little as a phone call away you don’t exist.

medx

Though I’m not unhappy with the Stanford Medx xMOOC on Patient Engagement it does seem ironic that the course seems so unresponsive and instructivist. That’s exactly how I experience the medical system and really, I wish it didn’t trigger negatives in me but there it is–a system unable to see its own faults against my mistrust. 

The discussion area is essentially a series of one-shot comments without any of them sprouting out into real discussions. Also comments don’t appear to “count” or can’t be found without extensive searching and I’m thinking that challenging or deemed off-topic comments are edited out. More obviously of course is I’ve had so much shit from los medicos I’m blinded by bias, seeing only the bad and maybe being paranoid. Probably and so what?

Even though ANES205 Patient Engagement irritates me in a lot of ways, I am learning strategies on how to deal with my own difficulties. An example is in my comment below (that disappeared from the discussion area) on the irrelevance of specialists as a resource that is unreachable–they see you, you don’t even ask to see them. Boy it’s going save a lot grief cutting them out of my reality. These are people so exalted in the system that their directives are not even meant for implementation–only to inspire awe and to amaze the foolish into thinking they give a rats-ass. They clearly have a function but no obligation to patients.

The other realization I’ve had is the medical system is so without imagination that being a patient at a distance erases you from their minds. These are tactile people, slaves to their sensing you in person. On the phone, printed out on a chart, or online you aren’t there. Adrift and vaporous you must enter their cloud chamber to materialize before them. Out of sight, out of mind.

To be fair, as a problem I’m not much fun. My heart leaks at the incision where my second implanted aortic valve rests. As a result, my chemo mix needs to be altered (which hasn’t happened delaying my further chemo by making me too sick and weak to continue). Weaker chemo will stop destroying the ability to slow the leakage by making platelets to plug holes in the incision. But the chemo also makes me dizzy and clumsy by lowering my blood pressure causing me to have to stop my BP medications which also help reduce heart pain….

In the midst of this I have not been able to talk to anyone at the doctor level or higher since before chemo started six weeks ago. You cannot call the specialists though I’m told they do communicate with my patient navigator who is silent and my own doctor only knows what I report to her.

My Medx comment on someone’s comment:

“…really like your global outlook on a patient’s “world.” My experience is actors in my medical practitioner world fall in and out of use. Specialists are normally the first to go. Existing behind departmental walls and protected by receptionist / assistant bouncers my sense it they treat by permission only and are best un-relied on for your own survival. Next level are “statuses” you are given to assure you that care is consistent and even available on demand. These assurances are simply empty products of faceless institutions. No one has time to monitor your care outside your actual presence in their face.

My sense is all institutions exist for their own survival and rationalize down to efficient processing only. Patient engagement is seen as an interruption in the flow of “care” so will be noticed. It’s hard to be a patient with so many actors trying to shape you into a mold that fits their system.”

Not Resolved

Find myself unresolved recently, right when I need to reinterpret things, my words fail. For Maha I promised a blog on a picture she commented on and need to find my notes from a class called “Writing About the Intangible” taken years ago at SFU in Vancouver. For the moment I’ll let someone else speak here:

From “Men Explain Things to Me” by Rebecca Solnit quoting from To the Lighthouse by Virginia Woolf:

“For now she need not think about anybody. She could be herself, by herself. And that was what now she often felt the need of—to think; well, not even to think. To be silent; to be alone. All the being and the doing, expansive, glittering, vocal, evaporated; and one shrunk, with a sense of solemnity, to being oneself, a wedge shaped core of darkness, something invisible to others. Although she continued to knit, and sat upright, it was thus that she felt herself; and this self having shed attachments was free for the strangest adventures. When life sank down for a moment, the range of experience seemed limitless. … Beneath it is all dark, it is all spreading, it is unfathomably deep; but now and again we rise to the surface and that is what you see us by. Her horizon seemed to her limitless.”

Scott

Intro to Intro #2

Chemo tip to avoid tingling fingers and typing pain: “don’t handle cold things without gloves.” I was warned and now know. It wears off in about an hour so may have to stop this a few times until my fingers “heal.”

What happened yesterday is by switching hospital clinics from Edmonton to the smaller Bonnyville (closer by an hour and much smaller) I now get to deal with everyone on the care team at one visit. With my cardiologist I can have one visit for an echo-cardiogram, another for a CT scan and a third to see the doctor for the results. That’s 3 separate all day trips and often hotel stays overnight. The system at the major centres has grown too fast to keep up with service. Alternately, many small centres are so poorly run (like where I live) they may as well close their so-called medical clinics.

Full of oil, Alberta is growing like crazy and this strains everything. Things grow so there’s no “time for planning” and inefficiencies and poor service are denied/ignored or bought-off by petro-dollars. Everything feels temporary here where employee turnover is extremely high, overwork is the norm and training is rushed to almost being useless.

As someone who enjoys studying systems for holes, leverage points and dysfunctions it amazes me how complex systems exist here at all. So what about this system as practiced in Bonnyville?

Bonnyville hospital has a solution I read about years ago that now exists at some places: Medical Navigators. In theory the role of navigator acts in the place of your doctor (who is too overworked anyway) to listen and respond to patient concerns about their treatment. They act as overseers and follow patients through the treatment process that can cross through a lot of specialties and departments. Unfortunately my understanding of hierarchies suggests a person placed in the middle will be seen as intrusive to people who imagine they are doing a good job and even when there’s agreement on the need for a navigator they will still hit resistance. For instance the Navigator needs to approach my cardiologist with care. I’ve gone through so much crap from that branch of my care I don’t even bother communicating with them any more. They’ll save my life when I show up in some state of near death (3 months seems to be the top limit–4 months, go home and come back).

It’s demeaning to be put through this, to be made to feel unimportant (I’m talking about my life). Have to stop here…

Introduction to my introduction

This a long story and you may find it boring or too self-involved but I need to post it to clear some space for being here at POT Cert14

My second chemo cycle was delayed for a week as I mentioned because it zapps my platelet count which I need at least normal to keep blood clotting around the incision in my heart that leaks that needs fixing as soon and the cancer is “gone.”

This cycle is already different than the first. I’m very energetic and clumsy here at 10 hours after the IV infusion and starting 46 hour chemo pump infusion. Other side effects: my saliva glands go nuts when I first eat something; left eye fogs over then clears and hurts; angina in sharp short bursts (I know these); very sensitive to cold; fingers and feel tingle and hurt, but typing with chop sticks is harder than trying to ignore the pain–experience tells me to work through the pain and not focus on the misery. That tactic is dangerous, works well, and life is dangerous anyway.

Was thinking not to make this blog available to POT Cert because I don’t want sympathy or to be a distraction. So I’ll give one example of why today relates to online learning:

I live in a rural small town in N.E. Alberta where medical services for medical disasters like me and almost non-existent. My specialists Vascular, Heart, Lungs and now cancer all operate out of Edmonton 3 hours one-way south of here. By being distant and tied to the phone only (specialists don’t do email) I’ve already lost contact with the vascular guy; my cardiologist’s first notice to me sent by email (ironically) to my local doctor was “lost” after only one attempt by the clinic receptionist and the clinic’s refusal to search for it resulting in a serious setback including a heart attack and a heroic patch-up by a surgeon when I did finally get into the cardiac ward almost 2 months later.

Because I presented as a “walk-in” there were no services booked for my recovery and so I missed psychological counselling, physiotherapy and follow up appointments–I was alive but invisible. When I called help-lines (even as a “priority patient”) I was diverted to receptionists who told me quite firmly that “no news was good news.”

This cheerful mantra became a problem after not being booked for regular follow ups and in year 4 my patch-up tore loose and my heart began swallowing my implanted aortic valve patch-up. Not able to get an appointment with my regular doctor for 5 weeks after I’d been sick for a few months I endured the time being miss-diagnosed by 5 doctors and one surgeon at the local “hospital.”

Seeing my doctor–my wife dragging me into her office–it was discovered I was in last stage major organ failure and got to go for a ride on the air ambulance. First to isolation at one hospital to rid me of c-difficile caught from the local surgeon. Then during the tests for c-diff I stopped breathing and ended up brought back by resuscitation and going into valve implant #2 surgery really smashed up and with a record of an unknown period of no oxygen to my brain. And also lost in what is known as Intensive Care Psychosis that lasted through surgery plus 8 and days after and included being tied to the bed and saying regretful things to my Daughters and Wife.

This time my cardiologist, who works a few offices down from ICU, was never told I came in because there was no formal check-in and worse than walking-in is flying-in. It took her months to contact me and by then, again, all services but the Home care Nurse had expired. I still cannot call my Cardiologist without getting the “no news” reply and no call back.

So now 2 years later scans for cancer in my colon showed leakage and a “stable aneurism” at the implant site at my heart. I’ve had one call from the cardiologist about the risk of cancer surgery that happened anyway. The only reason she called me is my oncologist for her imperial approval to give me heart threatening chemo. Then her most recent letter to my oncologist (email again) in reply got “Misplaced” (specialists don’t “lose” things–receptionists do) saying I could have chemo but it was risky, never got to the oncologist (they are both in the same university hospital building). It did go to my family doctor but she’s on holidays without backup and I had to stand at the counter and not leave until one of the doctors read it to me.

Short version is a system that values only itself and some phony issues of “privacy” and “integrity” can trash years spent on education (doctors unable to do diagnostics a one-eyed newt wouldn’t miss).

Smart as you are, online can cause you to miss cues you are a pro at in class. If you work at a school that has policies for “handling” students like objects. Find another place to work. Online doesn’t need to be “distant”, don’t let it.

Tomorrow I’ll write about what made today very, very different in my medical adventures.

Change approach

Occurred to me after my last phone call to the System-of-Care agent the I’ve developed a disability in speaking of my illness to others. Part of the problem is always speaking to another person. Each time I call I get another nurse or receptionist and have to start from the beginning and for some reason that disorients me. My cardiologist’s office is like this and the oncologist I’ve seen only once has now moved me to another clinic just when my chemo has put my heart at risk. Ironically, you need to be very together to be ill. It’s hard work.

Unfortunately, when I start to recount my history I get emotional and lose it. Even talking to my home care nurse, who I know pretty well (and she knows my complete history) I lose the ability to talk–literally. (Obviously there’s been little progress in recovery from the last incident with my heart, I’m still a mess).  Plus there’s the contradiction of my experience of health care givers  being advertised as “there to help” when in fact many seem either careless or actually untrustworthy.

So maybe I’m paranoid but so what? I need these people but also recognize they need me to be cooperative and rational and not some crazy sick person with issues. It confuses and distracts them for me to talk history. It also puts them on the defensive which makes me angry. This combination is not productive in any relationship and I think if wasn’t my life at stake I would have caught on much earlier.

No more history. It’s inappropriate. According to something I read last night contradiction sharpens awareness making it a useful friend.

delays

Tomorrow was going to be the second round of chemo but my blood test showed my platelet count is too low for my heart condition to manage chemo. Been sick since last Friday and tried the nausea pills prescribed and they work but since no one really reads all your records, the prescription conflicts with another condition I have. Or is actually the wrong drug or apparently any other reason that suits the moment.

I can’t survive this sloppy treatment so tomorrow I’ll stop cancer treatments until answers are given to me. It being summer (vacations) and my being out of town, I never get a chance to talk to anyone with any responsibility which means I’m being given diffferent stories by assistants of assistants and it’s time to go back to the source. The only way to get attention is to refuse treatment–nothing else get you more than reassurance.

In spite of being now close to having an incident with my heart while on chemo, the consensus seems to be I’m “over-reacting” to being prescribed the wrong drug. All I can do is defend myself as best I can. This is what having no voice eventually leads to.

Being more that one person

First round of chemo is almost over. After the in-clinic IV drip via my new “central line” tunneled catheter, I go home with an infusion bottle that administers the third of the 3 chemo drugs needed to treat colon cancer cells. So far things are fine though I can’t sleep with the pump on. It will come off tomorrow.

As usual, lack of communication played a role in this encounter with the medical system. My cardiologist never sent a “report” or message with her decision on whether my heart could take the chemo. I was able to get a doctor at my home clinic, where the report WAS sent, to read me the decision so even though my oncologist didn’t have it at least I knew we could go ahead and have my heart fixed later.

The trouble with critical diseases is a person becomes highly sensitive to things like not being told treatment details, cancelled appointments and promises of support that don’t work. From here a person assumes DANGER when really it’s just the usual bullshit of a normally operating system run by humans. Sure these people are more likely to kill you, but you are also closer to death–so don’t sweat it.

The truth is, when they do cause your death there’s already a story in place to cover their ass and gosh, they meant well anyway.

So I’m thinking the physically damaged part of me is going to live in the world of bad communication and careless-to-my-emotions reasons why medical people are absolved of blame and I need to back away from their need to be right and focus on my undamaged self. Yes, it’s important that people in charge of your life have human skills but I’m tired of asking for them to actually care, their acting is the best I’ll get and like most, they suck at it.

Funny, I’ve always felt I didn’t belong anywhere and it’s made me invisible. So invisible patient I’ll be. Not talking allowed when you can’t be seen. Learned that from Harry PotterJ

An Answer

Since last Thursday I’ve been trying to get an answer on the results of the CT scan that was ordered by my cardiologist. What will the results of this scan mean for my chemotherapy starting on Wednesday? Since I won’t be seeing the oncologist until Tuesday, when this will be explained, should I go ahead and have the central IV line surgically implanted on Monday for the chemo only to find it needs to be removed in order for my heart to be fixed first? (Yes that sounds crazy but since no one would talk to me up to yesterday I’m forced back on my experience being considered crazy until I actually die–and then get medical attention).

Yesterday, Weds I went,out of frustration, to my doctor’s clinic and asked if they had received a report from my cardio or oncologist. Yes, a report had come in last Thurs afternoon concerning the results of the CT and a recommendation from the cardio’s office. No one called me about this because the message was addressed to my doctor and privacy rules forbid a nurse or receptionist from passing the information on to the patient. Since my doctor will be back at the end of the month there was no reason to tell me anyway as it will be cleared up then. (Well, “then” plus the normal 5 week wait to get an appointment with the doctor–about 2 months after chemo starts). When city doctors tell me to “see my doctor” they don’t understand that doctors are seen by appointment only—not by patient need. A person can walk into the clinic and wait around 6 hours to see any random doctor who has a few minutes but can advise or treat because you aren’t their patient.

Based on the information from the clinic I spent the afternoon yesterday calling the cardio and the cancer clinic in the city where no one would answer my question about results. After about the 5th or 6th person telling me they could see the report, but not read it to me because it’s “confidential” (and can’t be spoken over the phone), I just broke down and gave up.

About an hour later a doctor from the cancer clinic called me and said their nurse had reported that I was “in distress” and could he help? I told him the story of my last experience with my heart made me serious about being told about my condition and simply wanted to know the results and recommendations of tests on my own body. He told me the results but couldn’t give the recommendation on the phone in case I wasn’t me. Results were: I have a stable “pseudo-aneurism” on the incision line from my last hast surgery, which puts me at higher risk with chemo. No more could be said.

This afternoon the receptionist at my doctor’s clinic snuck me in to see their new doctor. He was able to tell me the actual results: Yes, I have a pseudo-anuerism on the incision line on my aorta near my replacement valve #2 and there appears to be fluid accumulating there. Yes, I will need open heart surgery again to fix this soon. But, since there are probably malignant cancer cells still left in me from the removed tumor, the risk is least for chemo and then heart surgery in the new year.

Since no one will really believe how fucked up it is to live here with all these absurd rules I’m gong to stop writing about my medical condition. It just brings back the horror of dying while people stood by and watched and I can’t handle it. This is what happens to a person who lives at a distance away from people why are convinced their system serves everyone the same and is replicated by distance education people who ignore this factor too.

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