Tag Archives: voice

Be here, maybe

Edited from my original because I’m angrier today.

This is a reply I was going to leave at the smallc blog by Rebecca Matos but I am in a pissy mood and don’t want it to seem like I’m mad at her. You will have to read her blog for this to make sense. Don’t be lazy, do it!

The gist of my message is that though specialists are hired for their ability to focus and bring expert advice in order to save the patient’s life, I think they should extend some effort to know something of the patient. If they want live in a sterile glass cubicle and shoot diagnostics out their ass all day, then fine. But I would propose that as a witness to some pretty catastrophic health events they need to be accompanied by someone who notes the human dimension. My doctors and specialists hold my life in their hands and don’t know anything about me. In fact they go beyond non-recording to fictionalizing aspects of my personality when in extreme stress, and then claiming privilege by their ranking in the system.

So not only do they write the public account of my illness, they get it wrong. So to be clear… Well I’m upset…

To an extent I agree that the oncologist’s job is primarily to keep us alive. In my particular case, the answers received were from an oncologist who had no connection to my treatments and was obviously reading back from a list of standard procedures like the mechanics do at when you go in for warranty work. The only indication the answering oncologist was talking about me was a mention of contact with my cardiologist on the concern over how the aneurysm in my heart would react to the chemo. A question never answered until after the chemo was done and after 8 months of feeling like my heart was failing. That lack of feedback seems to be a hallmark of treatment here. It’s part of the institutional structure of disrespect for patients and definitely made way worse by my living in a small rural town.

It starts with there being nobody to fill the role of GP here. If you have a chronic health problem, well too bad, there is no continuity at all. My doctor sees me once every 3 months to renew my prescriptions, take my blood pressure and very rarely pass messages from the specialists. She’s a nice person but has lots of patients to see so 10 minutes for an appointment is the max. I don’t see her when I’m ill because it takes weeks for an appointment (if she’s even in town), so I go to emergency where, they seem to know me better but still I’m an incident in the shift log, here and then gone.

My cardiologist is potentially available but since she missed my second heart surgery she seems to be unaware of my case and it’s almost certain I’ll never see her again. Anyway she disappeared after my first heart surgery and with no continuity at her end or mine, my first implanted valve went un-monitored, came loose and tore the top of my heart to hell.

Then we have the original oncologist assigned to my case quitting over something I said and it isn’t my business to know. Yeah, I might have said something in those weeks after my first chemo. Felt like my heart had blown up again and I lost almost 35 pounds in 3 weeks and couldn’t get anyone to understand–though I DID get a reputation as a rude, verging on abusive person and had “services” and contact cut even more. It took months to find out oncologist #1 had been replaced and I have no real connection to her. Saw her once during chemo where I took someone to speak for me and my concerns were erased by small talk and the obvious message that fuck all was going to transpire.

Not sure, but it seems to be bad form to do everything possible to reduce a person to an invisibility. Who are we that don’t have stories? Why keep us alive?

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?

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.

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:-(

 

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!)

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