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?

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