The medical establishment

 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! 

What to say

Welcome new month! August! Imagine that!

I have the usual multiple appointments coming up and with the COVID policies, it makes things just a bit exciting. I get to see two of my least favorite of them all. I would love to never see them ever again but that is just not the possibility. What to do?

A lot has been on my mind. I am not looking forward to these appointments, to say the least. I must be very good to keep my feelings and my emotions in line. I have these nagging thoughts and yet there are very few people to share this with for me to move forward with all of these appointments. I have been searching and looking for answers and they are very hard to find. Seems that I know what I want, but getting that is hard. If I had started out this whole journey out with good insurance, I think that I would have been treated much better. A lot of things have happened over the years and I have felt it. If I could just not go to these appointments, it would be great! BUT! that is not smart. I have to look at these appointments as an opportunity for me to learn more and realizing that it is just a short period in time, makes all that much easier for things to move forward.

As I have looked back at my appointments over the years, I have experienced good and bad. The bad is really just that and it is that which makes me feel very hesitant. I want better. I want to be treated with respect and kindness and compassion. I had an appointment with my GI, Dr. KK. After YEARS of having diarrhea that the previous GI, Dr. BK, did not ever address, I had told KK that I was taking psyllium husk for my bowels and I would like to continue it "if you do not mind". What a look on his face when I asked that. He SMILED and was eager for me to continue to take it. BUT, why was it that I had to do this on my own without the direction of my providers? This is the center of it all. Doing my healthcare with insufficient guidance from my providers.

So, I experienced some different breast pain. I had addressed this with my PCP and she referred me to the oncologist once again. Of course--if the oncologist would do their job. So, I had to think about what it was and did some research on bras! Yes, bras. Since I wear sports bras, that may come to an end quickly. The nerves that were severed from my lumpectomy and the scar tissue growing in my breast have made it uncomfortable. So, I have got to get new bras and stop wearing the sports bras. I am looking at purchasing new bras--one at a time. These things are expensive. And it is incredible that these matters are not discussed or addressed. "How is your breast pain" can be a question that can go a long way. It shows compassion and consideration that I am a valuable patient. Too many times I have felt as though I am human detritus and that makes me feel very awkward. I suppose that these "providers" wait for my questions to arise so they can address my concerns. Information offered in the beginning is called patient education. I know that my Naturopath has come to the doctor-patient table as appearing as above me. One appointment he called me "you people" and that has never sat with me well. I have recognized that there is a separate place in this world: the medical them and the medical us. Who is who?

I want to have things change and I am doing my best to have things change. I am studying and I will continue to study and to know things. I want better and for things to be better, I want to be treated better and not made to feel as though I am less than human. I know, historically, this has been the experience for many cancer patients and as times have changed, so has the stigma.

Let us all grow!