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.

 

 

 

 

 

Broken ties

Know I promised to stop talking about my experience with the cancer system here because it’s counter productive and makes me feel helpless. Assuming things had changed I fell into a fantasy about caring caregivers and then today after waiting a week for a mouthwash prescription to numb the sores in my mouth to be renewed I called the nurse hot line. As usual there is a reason for it not being filled–my oncologist is away, like my doctor is always away, like my cardiologist is always away. But nurses are always available to promise things that won’t happen.

This call got me completely shut down. So I’m finished talking to the system. It’s obvious my unwillingness to be ignored has broken their patience with me.  I’m just trouble and need to go away–fair enough.

Luckily, I’ve run out of patience with them too. And just before my final treatment is very handy. Since my anger has made me speechless and speechless makes me angry, (try growing up with a deaf parent) it no longer furthers my health to talk with these people at all. In fact it weakens me to explain myself over and over and over. To stay intact, a person sometimes needs to allow people to misunderstand and think poorly of them. It’s time for me to practice my listening skills and let bad things end.

By the way, this is a good thing:-)

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.

Always Apologizing

Today’s blood test showed my platelets were too low. For a normal person the counts are good but because my heart leaks I need to have as much clotting ability as possible. Not that I “know” what is up with my heart, my cardiologist sends reports to my doctor who either doesn’t pass them on or is on frequent holiday and I can’t access her messages until she returns. Can’t get past the cardiologist’s receptionist either. Do here snippets of my condition when I see other doctors and they makes comments like Sunday in emergency when I found out the left side of my heart is dangerously enlarged. Or the leaking thing heard from my lung doctor. Worst is everyone thinks I know and drops them on me with no warning.

Anyway no chemo tomorrow so the note is pointless as I need to talk on the phone to the nurse who will reschedule me for possibly next week if my platelets are good. Except I’ve been warned my nurse time has been excessive and I just don’t want to hear the bitching so I’ll skip next week as it coincides with a visit to my seldom seen cardiologist to get the last year’s news on my heart and maybe see my new oncologist. Though it will probably cost me all the rest of my care points it would be nice to know if they plan to test me to see if the 8 rounds of chemo so far has had any effect–testing to see if the treatments are working apparently isn’t part of the service. Also, since no one from the main clinic has been in contact since August 13 it would be cool to know if they are still into cancer stuff or sold the building.

All this is going to cost me loads of apologies for being a needy inconvenience, a resource hog, unreliable and unappreciative. What a mess.

A note from me

The branch clinic oncologists have been quite successful at sustaining my low opinion of them and now that the Patient Concerns person who represents the whole Provincial institute has shut me down I’m going into no-speaking mode. They want me to be silent, “respectful” and submissive and do it by constantly judging my comments, “correcting” my understandings and shitting on my feelings, so shut-down time.

I really have the sense that it is institute policy to decouple feelings from treatment. All their offices are lined with posters telling you you need not “go through this alone” but everything about their behaviour makes you feel wanted only for your disease and mocked for your weakness as a faulty human–well, not human, patient / module.

After months of “care” it’s obvious no change is on the way so I’m printing up the following note to present at each appointment. Have left space at the bottom to fill in the answers to the symptom list they go through at each treatment and will respond to spontaneous with post-it notes to stick in my file.

To my medical care-takers.

Recently I’ve noticed that my conversational style and descriptions of past personal experience appear to be both irritating and understandably irrelevant to my receiving care in the present when those things are not happening. Also as noted on my records, I apparently have used up most of the time allocated to my being interviewed anyway. In response, it is now my policy to try and anticipate questions and submit answers in writing on arrival at the clinic. Further questions will be answered in brief written form by small notes.

With my not asking questions or engaging in unnecessary historical narratives I expect this will speed things up considerably.

Scott Johnson

Spinning Wheels

This all started with an interview I had while in the middle of being extremely sick from my early over-strength chemo doses. Weeks of vomiting and diarrhea had emptied me of all my heart and anxiety medications and I was in bad shape and emotional. Also I had repeatedly called my oncologist for help and received no replies (she never has called me and dropped me as a patient months ago).

Call from the Patient Concerns office at the Cancer Institute (CI) yesterday. I had thought this office was a neutral arms-length mediation service but it’s just an internal fix-it service. The gist of the conversation focused on my being “rude” on the phone and in person. This is apparently new definition of worthiness to be treated as sick, good manners. The secondary operational directive is that any damage not directly done by the staff at CI is irrelevant; as in my dying in June 2012 from incompetent medical care is taken as an unrelated disappointment in the remote past that bears no relation to my current state of mind. (This is an expression of a common contemporary belief that all hurts are get-overable by normal people with attention to a proper diet, an astutely accessorized wardrobe and a kind of modern mental blankness that feeds on slogans and policies instead of empathy. All pain and suffering are minor Boo-Boos to be kissed away–not to be “fretted over” like some sissy).

So now I’m back to being nowhere with more unjustified “complaints” added to my record to further silence me. On the bright side I have a few more tip for the “What made you think we gave a shit about you list.” The application of logic and reason in cases of distress are intended to diffuse and calm an emotional situation. Proper application of this variation on Mommy Talks to Little Timmy speaking style can successfully convey a sense of superiority and unconcern that puts people in their place while also imitating good advice. Since medical science is largely all about arranging people in proper relationships with their squishy-bits for optimal functionality, Timmy Tips are, as they say, just what the doctor ordered.

More seriously, my ability to navigate the spoken environment has deteriorated to almost nil since my last intensive care stay so I’m going silent at all doctor interviews. In the city I can take my Daughter as my voice. Alternately, a notebook will serve. Too bad well educated people can step on people without consequence but that’s the game:-(

 

Mythology

No chemo for tomorrow. My platelets are at 80 and need to be minimum 90 to “pass” and receive chemo. I’m usually in the upper 90s and last time exactly at 90 allowed me to be treated but it also made me really sick.

After the 2 minute call from the cancer clinic it occurred to me that uncoordinated care is almost worthless. Even worse is the assumption that the world I live in matches the model imagined by the system. According to the system not getting chemo doesn’t mean I miss a chance for a check-up and an assessment because after all I have an oncologist looking over me–except she quit my case without telling me who would be taking over. I could call the main clinic but they refer me back to miss-no-longer-there.

Could also see my family doctor if she wasn’t away until the end of January. No, there is no back-up covering for her so that’s out. Local hospital? No. Same people as staff the local clinic–not safe with them.

This is a “concern” for my cardiologist in that low platelets can allow the leakage around the aneurism in my heart to possibly increase. Except the path around the wall built by the cardiologist’s assistant can only be passed by my doctor or oncologist–patients aren’t allowed inside the decision zone.

Of course doctors with all their training aren’t fools and set up an elaborate reality of expectation. Not my reality, but mention that to them and out of the system you go. Challenging the mythology sustaining an institution can, in this case, cost you your life.

 

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.

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