My oncologist Facebooks with me.

She posted a comment when I posted about sciatic nerve pain.

She follows me.

You don’t leave a medical provider like that.

So I was relieved, after shedding a few tears, really, when the intake specialist at Seattle Cancer Care Alliance tells me “There’s no team here, either.”   I had been telling her I am perfectly happy with my oncologist and I trust the treatment she’s prescribed.  I just don’t trust the Issaquah team.

“There’s no team here.  You will see a medical oncologist who will review your scan data and you’ll be sent to the UW hospital for things like liver biopsies.  You can just as easily have the same experience here as you did at Issaquah.”

Oh.

But…but…but…   Your website is all about collaborations.  There’s a breast cancer team that meets weekly to discuss patients.   There are links to Seattle Children’s and the UW and the Hutch.  Programs to support families — kids of parents with cancer.

No.  You see a medical oncologist, not a team.  And the oncologist will review the same data your oncologist has reviewed and let you know if he or she agrees with the treatment plan prescribed.  If there is agreement, you stay with your oncologist.  If there is not agreement, you decide which plan you like better and go with that oncologist.  It’s just a medical second opinion.

Tears well.  No team?  How about a guide?   Maybe I don’t understand the roles and responsibilities.  Is the social worker the guide?  Is that the person who helps you navigate this?  Maybe I’ve just been entering this all from the back door.

The intake specialist sounds genuinely sad and at a loss.  She doesn’t know.  Maybe?  She says she’s sorry that the website is misleading.

And while I am relieved in a significant way (I really don’t want to leave Dr. Wahl), I am also feeling abandoned, disillusioned.  That makes me sad.

I had already been thinking a lot about what it must be like to be each of the medical providers I’ve encountered.    And I’ve been comparing the hospital institution to my college, Bellevue College.  I’m in the position of a first generation college student who did well in high school.  I feel like I’m good at school.  I feel like I know how the classroom academic game works.  And when I get to college, that cultural knowledge and academic preparation propels me well towards success….until it doesn’t.   If you don’t have an insider perspective of higher ed culture, there is a place where your assumptions of how academia works break down — and typically, you fail.

So I came into this second round of cancer culture with that history of being a successful patient.  I felt literate.  But I wasn’t.

I have a lot to say about this.  But I have to get ready for work.  More soon.  🙂

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