Tag Archives: northern living

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.

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.

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.

Distance

No word yet from my cardiologist on the results of my “rushed” CT scan done at 8am last Thursday. They now have 3 scans of my heart but seem unable to do anything. (The top of my heart and the implanted aortic valve #2 are coming apart and the chemo might kill me).

We are 3 hours away from the clinic and I would go in but it’s an all day trip. So I phoned the Cancer Clinic to ask if they could contact my cardiologist, (in the same building) as the number given out for contacting the cardio is not for actual use. Though it does look good on her card–almost like she cares.

No call back from the Cancer Clinic so I now have another number to call if that doesn’t work but makes it look like they care. (Even if they can’t see you, it’s nice that they care).

Telling people their pretty help system doesn’t work, whether they are a school offering online courses or a hospital offering emergency services, will get you unbelieved if not banned from calling them. Once a person realizes the system parts don’t work, other things they tell you become suspect. Why train people at great expense when the simplist part of their little professional circus make people not trust them?

Our video person

Sending this along to show off some work by our video producer. This link takes you to the college page: http://www.portagecollege.ca/News_Front/College_Employee_Wins_Video_Contest.htm and the link to her video is at the bottom. Due to our northern location and somewhat rough lifestyle is can be very difficult to people to move here and stay. On the other hand, this means opportunities, especially for young people starting careers.

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