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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  • VanessaVaile  On September 3, 2014 at 11:36 PM

    I damn near got stuck at the image of you typing with chopsticks. You made that medicine /education analogy in an earlier post. It’s a strong one. The rest of reminded me to hospitals. That brought me to thinking about student aversion to education and learning, highlighted by the hospital analogy.


    • scottx5  On September 4, 2014 at 12:02 AM

      Changed treatment centers from the big factory hospital to a mid-sized one about 2 hours away. Mush more personal service that I’ll write about. Just had to get the story out to move on to the more positive things. Plus I’m very high on some interaction between chemo, heart meds and an insanely obvious addition to my treatment team. More tomorrow. Around a corner today–and not one person bossed me around so they as my better self.

  • in development  On September 4, 2014 at 11:48 AM

    Ironic in some ways that hot-shoted-ness of the big city specialist can be very easily surpassed by people in smaller centres who need to be more adaptable and less reliant on layers of departments and proxy services to keep the patient management system under control. Given my experience in this small town where I live though service stinks because the doctors have congealed into a flock of morons fixing standards at the bottom.

    So there are no hard and fast rules here? No. The local veterinarian’s has one Canada’s top ranked large animal vets. This being the northern end of ranching country and the price of beef going up, keeping the stock healthy up to slaughter is vital. The guy’s really nice too. He let me help remove porcupine quills from my daughter’s 90lb dog’s nose while he was between cows–a full lesson in case we can’t get to him. Think I should change clinics?

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