Treatment Is Its Own Patient

As I get further into the grind here, I've come to realize many things are not as you would expect.  At a certain point it became evident that my Treatment was its own animal, something that I needed to care for as much as anyone else.  Here's what I've learned:

Oncologists Manage Cancer. They do not manage patients.  I'm sure there are exceptions to the rule, and I don't think this is a bad thing. Dr. D described it best when he aptly stated "you don't need to like me, I just have to do my job well".  Pretty accurate, when you understand his job is to get rid of cancer. Not to be your best friend, not to manage any other illness, not really to figure out how well you're feeling on a day-to-day basis.  They look at data, CT scans and medical journals. You are a periodic visitor to what they are there to understand, you just happen to be the one carrying the goods they're paying attention to...get used to it, understand it, and use it to your advantage.  Oncologists will manage information flow to patients so they can, in turn, manage the cancer more effectively. They want to stop seeing you as soon as they can--it means they've done their job.

Nurses Manage Administration of Treatments. They do not manage cancer. The nurses are omnipresent and often extremely knowledgeable about your cancer. They are your front line for everything from nausea, to miscellaneous pain, to any other immediate situation. They generally make sure that to keep you well enough to receive the drugs/radiation/surgery that is prescribed. You'll find yourself in a world of confusion if you try to find out more about your cancer, prognosis or treatment plan if you ask a nurse. They are well intentioned, but they are not your Oncologist.  Asking them whether your AFP has dropped quickly enough should elicit a blank stare. If it does not, beware of the answer...it isn't from your doc.  

You Manage The Intersection of Cancer and Administration. Docs are busy, nurses are busy. Each of them are seeing at least 200 other people in your same situation, many have patient loads of >1,000. They will see your file for approx 2 mins before seeing you. You are not memorable, you are not their favorite, you are chart number 2359802785.  If there are things that the doctor has stated that need to happen that haven't...you better damn well follow-up yourself. They have too much to manage. This is especially problematic for what I'll call "secondary" work (i.e. getting a new drug, scheduling a CT, meetings with any other specialist). The doc will think of it, make a note, and pass it through a congested system. You better take a note too, and you better call and make sure everything is scheduled, humming and clicking as necessary.  You think you're getting a new IV drug? Check the label. Seriously. You know you need tumor markers drawn? Ask everyone, the person drawing the blood, the infusion lead, the nurse and double-check on your way out. You know that CT scan is supposed to happen? Better call to make sure.  My Oncologist said it best "You manage yourself and your treatment. Don't trust anyone."

More to come...