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.

Not Easy Yet

Last week we visited my younger daughter and went out for dinner. It wasn’t fun and even though I’m done with chemo and clear of cancer the fact is I’m twisted up inside and damn tired of being told to “get over it.” Or the latest, “we’re all sick of you feeling sorry for yourself.”

I don’t know what to do about this beyond not sharing this blog and the rest of my life online with even my own family, especially my younger daughter. Her advice, impatience and judgmental attitude isn’t welcome anymore. I’m not the person she wants me to be–too bad.

My wife, on the other hand, at least has a friend who had cancer and now understands a bit of why I’m still a mess. This helps take the pressure off but you know the depth of experience from two heart failures caught at the last minute and the just done cancer is not something I SHOULD get over. More on this later.

On a related topic, Rebecca Hogue at Cancer Blog Mentors is doing a survey that needs to be done really soon. This blog is hardly good advertising for the restorative powers of blogging but slowly it is working for me. Details below.

Blog Impact Survey – a Reminder

Hi everyone,

Just a quick reminder that I’m doing a study on how breast cancer blogs impact those whoread them. There is little or no research on the impact of blogs have on the readers of the blog – more is done on the impact to those who write them.

So if you are reading this now – please take a couple of minutes to complete the survey. The more detail you include in the written parts, the better.

Here is the link:



This blog inspired by things said by Rebecca Matos at her blog
And Maha Bali’s blog “Pushing: A Matter of Perspective & Faith”

Illness isolates us, we withdraw from the normal social exchange, become more fragile and when we try to explain the hurt raises up and chokes us or comes out in an emotional over-reaction.
Things are coming up in me as I wait for the final word on whether the chemo worked. And since the decision on whether I needed another heart operation depended on being rid of the cancer there’s going to be another wait of unknown length for the cardiologist to contact me–she frequently forgets me and even showing up by air ambulance doesn’t get her attention.
All this deciding by others that doesn’t include me is further isolation I know will be made worse when I finally go to the appointments and face the bland normality of being “cared for” by agents of an institution that could as well be a place where misfits are tortured until they give-in and promise to be suitably reduced to unfeeling objects.
Rehearsing what I need to tell them it becomes clear I will say nothing. What can be said? They have treated my cancer only (same with my heart). Who I was / am before and during my sickness is beyond their job description and for their purposes behind a wall of caustic remarks designed to scrub me from their thoughts. “You seemed satisfied.” “You never mentioned this before.” “Your past experiences are to be gotten over and have no bearing on your treatments here.” On and on meaning only “We don’t hear you but no matter because we know best what you need and if you would just get over being a person we’re sure you would feel much better.”
I realize this all sounds like feeling-sorry-for-myself stuff but it’s part of a rebuilding process to reclaim myself from the judgement and disrespect that’s been my life since 2007. Recently a friend recommended “The Will to Change: Men, Masculinity, and Love” by Bell Hooks and though I haven’t received the book by mail yet my thoughts are on change and also isolation as the price of survival as a person. Not a happy choice.

The upfront price is to stay away from the medical system except in dire circumstances. This sounds a bit crazy but the medical system here doesn’t work for rural people and depending on it is as likely to kill you as staying away. People who don’t understand the dynamics of the failed systems  here suggest I try a different medical team. It’s perfectly logical and meant to help except that option is closed. There is only one clinic in town and all but one of the doctors there didn’t participate in standing dumbly by while I died of heart failure right in front of them. This happened at the one hospital in town that they also are the only staff for. There is only one cancer clinic for northern Alberta run by the one organization that serves all of the province. All the care outlets originate from from this one provider and they don’t talk to me by any means beyond appointments where there’s no time for chit-chat that doesn’t involve  praising their magnificence. Same with cardiology except they forget about me except for a yearly call to see if I’m dead yet.
So my choice is do I rely on people who not only fail me but are also intent on treating like a piece of garbage or do I reclaim myself and leave them behind? Right now my choice is to not study their abuse any more. I want my life back.

Inspiration for my Blogs

As mentors over at the Should I Blog? mini-course on blogging for people with cancer we’ve been asked to reflect on what inspires us to write out our thoughts and experiences.

This a tough one for me as I feel nothing inspirational about my treatment as a rural cancer patient in Alberta, Canada. All I feel is alone and cut off. In fact, my emotional response to the machine called “care” here has gotten me pushed away form what minimal services are on offer, so I’ve just gone silent.

One of the worst comments I get is some variation on “these people are wonderful and you are the only person to EVER complain about them. So now I can add “ungrateful”, “mistaken” and by implication, “unworthy” to the list of my failings as a human.

I wonder if people realize how incredibly isolating it is to tell someone their perceptions and feelings are mistaken? Or to reduce a sick person by judging their manners as unacceptable when they are desperately asking for help?

Now I hear people protesting that not every person in the cancer industry is uncaring and hard. Fair enough, I can’t claim hurt by being labeled as a person who throws around generalizations without saying I also know there are good people on my care team. But I do claim the right to be treated as a whole person.

What inspires me in an odd way is how people enact imaginary roles and are unaware of how disconnected from reality THEY are. Writing about this helps me understand things that are not exactly happy things but puzzles that could swallow me right up.







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