Quick update for those of you who are checking on me. My chemo went well yesterday, I am still riding high on the steroids so I am pretty OK today too ( outside of a little nausea).Nothing else to report health wise.
So I wanted to do a post based on a discussion we had yesterday about Cancer Care and health care in general. I think many people feel strange about this topic and it is why I am going to address it in my blog:
Patients have a right to question their doctors!
We have a right to say "no" to any treatment we are not comfortable with.
We have a right to ask for pricing and insurance coverage before we say yes to a procedure.
For those of you that have not met me, I live in the US in the deep, deep south. The prevailing patient attitude here is that Doctors are all seeing and all knowing. As a patient this translates to following your doctors orders to the letter without question. Many of he folks in treatment alongside me don't even seem to be clear on their diagnosis, they are just following the doctors recommendation for treatment! If you are comfortable with not knowing what is going on with your health, this is definitely the way to approach treatment. As a Cali girl, I grew up with the California attitude.. Question Authority. I come to every doctors appointment with a note book and questions. I want to be very clear on both my diagnosis and the options that I have. After I have finished the appointment I save my notes and go over them later for clarification before I make any decisions about what treatment I will approve and what I will research. My oncologist was extremely offended by this at first, we had several battles over my questions. I finally told him, I am not looking to contradict you, or offend you I just want a clear understanding of what my choice are and how those choices will affect me. That was our final battle about my questions and notes, he now comes into the room and just takes the notebook from my hands - he patiently runs through each question with me and then he presents his agenda for the appointment. If I am too sick to ask questions, I bring someone with me who will --and I also have them take notes.
You also have a right to say "No" to any treatment you feel is not for you emotionally, health wise, or financially. For example, when I am on chemo. treatment, my hemoglobin often drops way below average levels. I can actually tell before they test me that it has dropped because I feel so awful! The standard treatment for this is either a shot of a medicine called Aronesp, or a blood transfusion. Either option comes with risks. For me personally, I can accept the risks of the shot if I so sick that I need a quick fix. I personally feel that if I have to have a transfusion to keep me going, we have pumped more chemotherapy into me than I can handle. If this is the case, I think it is time to stop chemo for a while and let me heal, not have a transfusion! My doctor does not agree with me .. but, he is not the one in chemo, I am!!! So I say no to transfusions in this case.. it is my right and everyone has been made aware of my choice.
Finally, you also have the right to ask questions about cost and insurance coverage before they do any treatment on you. You also have the right to negotiate!! Please be aware- you may be quoted three different prices for the same procedure! Medicine seems to be like the used car dealers, they charge what they think they can get you to pay and they have no shame about an aspirin costing $40.00!!! It is your job to ferret out the financial option that works for you. I am aware that for some of us our costs are so high it seems like nothing will work ... this is when you need to pull out your negotiating skills. You can make this work.. you just have to remember they do want to help you get well.
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