We are the control. We are the subjects in medical observation and must accept the manner of treatment given. This can be both functional as well as dysfunctional. This week, I have been in the doc's office three times. One for the ENT, another for the Ortho, and finally for Immediate Care. I had a follow-up appointment with ENT for my ear troubles when I was seen in Immediate Care about 2 weeks ago. The appointment did not go as well as I would have liked it to be. The discussion was that my ears looked "fine" when they indeed were not. In this discussion, we had discussed referred to an Otologist who is a subspecialist of ENT, and this person would be about an hour away. I am not all that enthralled at the aspect that the provider is that far away. I had expressed that this seemed to run cyclically and I believed that it was oncogenic. The Provider did not care for what I had to say, simply that there was nothing anyone could do. He wanted to give me a stronger strength of steroid cream for my ears. I said no and as we were walking out, he asked if he did a good job. This was my third time seeing him and I believe my last time. When I was in Immediate Care, Doc had said that it was counterindicative for me. So, increasing the strength of steroids is not ok. I need a provider who is willing to communicate with my Oncologist to determine the right course of treatment for me.
I went to Ortho this week as a follow-up from my MRI. And, of course, I had to do a lot of restraint for the things I needed to say and wanted to say. The Radiologist indicated there was not a tear and that I had had tendonitis. Even my Sports Doc said the same thing, but this was just a bit much. This provider, a PA-C, indicated that I needed surgery. So, I had expressed that this was supposed to be fixed in 2014 when I had applied for LNI but because of the doctor that destroyed my claim, there will never be any possibility. I do not have the resources to have surgery, recovery, rehab, and take care of myself financially during that time. I would need to get a different job that I have now and to re-invent my life. This is not an easy task. I told him, as well, that there is little that can be done. He insisted that surgery and an injection could be helpful. No to surgery and I have had many injections and too many are counterproductive. Again, the steroid issue for someone who has gone through chemo and currently going through oral chemo. It is not indicated as a plausible treatment. Provider was not all that pleased and left it open for an injection. I seriously do not want to return back to this clinic and very well may not.
Then, yesterday, I went back to Immediate Care and was seen by one of my favorite doctors. Dr. L. The conversation was open, honest and we have decided to determine I had expressed the matters with the ENT, one he had suggested and referred me to, and the ongoing issues. He listened and that matters incredibly for me. Yes, I was in tears because this burden of dysfunctional care has been on my heart for some time. He was not impressed with the manner of the ENT. As a cancer patient, my care is complex and I did tell him that. I need a provider who will not be afraid to collaborate with other providers: "patient presenting in clinic ... " and seeing about a case study. I believe that my ears are aggravated by the Aromitase Inhibitor and nothing else. There is nothing that can tell me otherwise. For the past six years, my ears have been constantly aggravated with no hopes. I expressed that there is nothing that can be done and that we need to just stay on top of the symptoms. I also expressed that I need to have a provider who will provide a plan of care so that I know what to do and how to collaborate with my medical team. This has not been done. I want things to change. I am a bold and brazen woman and will speak up regarding my health and care. I have done.
This doctor-patient encounter put me to tears. My frustration is deep and it has been long lasting. I want changes and I am willing to continue for the changes.
We press on!
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