Tag Archives: listening

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?

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.

 

 

 

 

 

Leaving

What’s it like to leave a group? Quit membership? Give up defending yourself?

Sometimes you can’t be understood no matter what you say because you are inarticulate, tired of explaining yourself, won’t play. And you get too comfortable and need to drop that comfort. Or maybe you never belonged and have been fooling yourself?

Over the last 6 months I’ve been labeled “rude” to the point threatened ejected from the only cancer treatment center available to me. Because I was too sick to explain my anxiety over not being told anything about my treatment I insulted someone in a place of power who could hurt me. And they have. My crime? Walking out on an interview where it was obvious the interviewer had no interest in hearing me because in their imagination there was no possibility that the system they represented could ever fail someone. Since it couldn’t have happened, it follows that I was mistaken and an unreliable witness to my own experience. Erased as a person my only recourse was to admit what happened to me didn’t occur and apologize to those who have no room in their understanding anything outside a world as they are privileged to define it.

For 6 months I’ve been in pain, sickness, disorientation and disallowed from asking for help because the condition that I give up all of my self to be someone who has the power to understand my world as it suits their own illusions. Tellers, not listeners, these people live by shaming you, by never having anything but the best intentions, the purest of motives and NO awareness that what they say denies the voice of others. UN-reflective and full of suggestions that others are so mistaken while they are so right…

I’ve had enough of this sanctimonious certainty. Challenging mythologies has a price but ultimately it isn’t about being right or justified–you just can’t give up any more of yourself.

 

Different

Back from a very stressful few days in the city. Event one was an appointment to see my Cardiologist about the slow growing aneurism in my heart. Scar tissue from two previous surgeries to the aortic valve have slowed its progress so this was a follow up after an exam in mid-October. Three hour drive on northern Canada roads in January to get there only to find the appointment had been cancelled without telling me. Plus the cardiac clinic is so booked there was no one else to see me–too bad the system has no awareness of what this does to people and their families with chronic health problems. Communication failures are 100% common so it’s back to phoning before appointments and understanding that there is no one to look after you, so you better be tough or you die.

After that screw-up my appointment with the new Oncologist happened the next day. She’s a nice person who answered questions to things I’d never been told because my assigned oncologist quit, my family doctor is never available and people who “treat” me at the branch clinic DO NOT answer questions. It was a nice interview that resolved nothing as I can’t be treated at the main clinic because it’s six hour return drive with the blood test one day and if my platelets are good, chemo the next. Since I usually don’t pass on the first try and you don’t know if you passed until the following day, each treatment “day” involves 4 long days for two of us plus 12 hours mid-week driving.

With the rural service I can get blood taken in the morning at the hospital a few blocks from my house on Tuesdays and know by 3:00 PM that day if I “pass” and if so I only lose one day to driving and infusion on Wednesday. If not, it’s back to give blood the next Tuesday and only an hour lost. The people at the main center are nice but are set up for locals only and make it very difficult for someone from out-of-town to be treated.

This is supposed to be a Provincial medical system but city and country services are not comparable. At least in the country I know my treatment will be sloppy, unprofessional and performed by people I don’t trust or like. But it beats city people who are the same type with better manners who will kill you just the same.

At least now that we’ve seen my new Oncologist it’s obvious the whole idea of trust is an illusion. Medical people I deal with are technicians and being a person just isn’t part of the game.

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!)

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.

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

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

Frustration

Last night we drove the 3 hours to the city to stay in a hotel so I could get to my 8:00 am CT scan appointment. While this procedure was supposed to have been ordered by my Cardiologist there was no mention of it on the requisition. Since it appears my second aortic valve implant is being affected by a nearby aneurism, the cardio needs to decide if I can take the extra load that chemo will place on my heart. But as no record of the cardio on the order, nor a consultation with her was booked, we spent 6 total hours on the road and hotel costs for a 1 hour appointment for the CT that was performed less than 100 feet from her office.

Besides the surgery and the important prior check-up with the surgeon, we have had 3 single appointments that cost us a full day each for less than 10 minutes at each appointment:

Intake GP who hardly looked at me and scolded me for my “attitude.”

Consultation with Anesthesiologist who had very old records from my first surgery and ordered I see the head of surgical admitting to be sure they could admit me into intensive care if things “went wrong.”

Surgical admitting who made very light of bed availability, treated it as a joke.

It’s obvious to me no one considers that I am from a log way away or that my time and how I feel matter. They all talk about how “caring” the system is or how “complete” the coverage is. When I tell them this magical belief is not born out by reality, they refuse to listen or get mad.

For instance I’m now on two “critical care” lists that include direct lines to “help.” Both are only staffed 9 to 5 on week days and only take messages after putting on hold for up to an hour. Since no one phones back there’s no reason to leave a message so the back-up is the suggestion I see my local doctor or go to emergency. My doctor is a 5 week wait to see her and the hospital killed me last time I went there. In the magical land of medical belief, this isn’t the way things work so there’s nothing I can do–except display an “attitude.”

Probably now that I have their attention there will be another round of bullshit appointments over this and I’m done playing and will refuse to cooperate. This last surgery was very painful with all the clumsy needle work the anesthesiologist’s assistants did searching for arteries plus the pain in my incision frequently flares up but there’s no one to call so maybe I’ll just stop all this and take my chances.

Tomorrow I might hear the latest scheme. No more appointments or check-ups. Treat me or leave me alone.

Almost ready

Tomorrow we are off to the city for surgery on Tuesday June 3. I have a real sense that this whole process has nothing to do with me. The simple fact is I’m not to intrude and the disassociation I feel is silenced by condescending reassurance. It’s a strange feeling to be not there. Last time I fought it because I was dying and it kept me alive to resist.

This time isn’t so serious (depending on who you trust) so I’m going to try being silent.

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