Same Old stuff

My family doctor is away for six weeks. This happens 3 or so times a year without any warning. Because the clinic I use has no policy for continued care of chronic patients I now have no access to files and updates from other doctors as their messages go into my doctor’s message file and aren’t monitored or passed on in any way.

By accident my lung doctor mentioned he had seen a message from the oncologist who WILL NOT talk to me about a CT scan sent to him (I see him about every 18 months) because it images my lungs really well. That’s good news but there’s also something about my cancer’s “progress” (not a nice word) that goes unexplained plus some news of deterioration on the left side of my heart.

So hopefully the appointment next week at the local clinic with a different doctor will get me access to my health news. (Ha!)

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.

Half way through cemo

According to the nurse I’m half way through through my treatments which now look like they will run on until March. Being tired is the worst side effect followed by confusion which is frustrating.

Since I live in a Northern country the sensitivity to cold can be a problem–especially with outside temperatures always below minus 10 Celsius until maybe mid-March. That said, the major problem is the incessant tingling in my fingers that eventually causes me to drop things when outside. Gloves help a bit, as does paying attention to my grip, and I am able to be outside up to 40 minutes before the tingling turns to real pain. Walking is starting to look possible again and the breathing problems aren’t as bad as I was warned about.

Since I’m going crazy inside I’ll be taking Rebecca’s advice and walking longer distances each day. Was thinking of the bike but though the snow here is pretty sticky and skidding is avoidable but my balance sucks. So no bike.

Treatment schedule originally set for once every two weeks has been disrupted by the chemo lowering my ability to clot blood or reducing my immune cell count. Both of these conditions are hard on my heart which is damaged but also hard to see through all the scar tissue from two open heart surgeries so “monitoring” consists of watching for signs of congestive failure. Simple test: if I lay down and can’t breath my heart has blown again.

Anyway, my new chemo schedule is based on platelet counts to clot my blood and immune cell counts to prevent bacterial infections – the original cause of my heart failure. Three to four weeks between treatments is now the norm.

No word from anyone whether or not all this crap is actually working. Oncology staff at the branch clinic tell me nothing. The bad interview there at the beginning of my treatments when I was so sick has poisoned any relationship with them. They think I’m a fool (being sick is no excuse for being impolite) and I keep contact to a minimum to stay out of trouble. Also, my experience has been that doctors just run in circles when presented with symptoms. They get distracted, panicky and fixed on the wrong diagnosis. This can run on for months, involves a lot of misery and ends with you dying anyway. So I don’t report symptoms but do make sure to get close to an ambulance heading for a real hospital when the end feels near. Chronic-Illness-Chicken is my term for it.

Last thing. The oncologist in charge of my care at the main clinic has dropped my case. Since she has never called to check in the whole 4 months of my treatments. Nor made any other contact beyond a postal note telling me she Does call and her letter quitting my case, it’s hard to determine what this means. Other patients tell me their main Oncologist contacts them at least twice a month so it must be me.

Change of Outlook?

Maha Bali’s blog on Defending the Bully got me thinking about my current thought patterns and the fact that my comments at FB and other people’s blogs are too self-referential or interpretive of raw experience. Not sure why bullying made a connection for me though many things take me down odd pathways–which might also explain why my memory often can’t find its way back to something, no mapping of strategies, just wandering. She also mentioned not being lost in the comment sphere of the blog sphere–being lost is a big part of my life now, lost and unknown.

Starting with medical things. I’m, as usual, adrift. No word from my oncologist since August 13, and after her snippy response to an email stating my observations it seems best to cut her out of so-called Care Team altogether. After a flurry of activity around the aneurism in my heart and a couple of hurry-up CT and Echo scans we are back to no news from the cardiologist. After making two trips to the city at 6 hours driving time each for “vital” CT and echo-cardiogram images I now wait for how long until the results are told to me? Since I’m not allowed to phone them and ask, this goes on the list of unknowns that includes regular delays in my chemo sessions because the drugs are collapsing my ability to clot blood or fend off infection.

Seeing a psychologist with mixed results. There’s a lot of pressure to find “peace” in forgiving others and I just can’t warm up to that. First, all my life there’s been the assumption that happiness and balance are deep virtues. How many books on spirituality have I read? Not sure but remember I grew up in California in the 60’s so let’s say LOTS.

So why does happiness matter? What’s wrong with being a mess? Would it make my life better to be accepted as “normal” by others? This has always been a problem, acceptance over who I seem to be. And this returns to the topic of relationships which is a study that needs more though for later blogs.


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.


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.


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.”


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.

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