First of all, there was little communication from providers regarding what to expect. All of my appointments were canceled with the explanation that when things started to open up, there would be the opportunity to have appointments. Of course, this has been strange beyond all compare. During this time, communicating to the providers has been minimal. Talking to my oncology team has been nothing shy of impossible and quite distasteful, it has been quite upsetting. My oncology team is sparse to discuss anything. Labs completed, there is no discussion about what is going on. I really like communication and there is none. I am left to figuring things out for myself and while I have been doing that, there is no reason why a provider should not feel it necessary to communication to their patient. It is a good thing that I am studying my labs and staying informed. What is very sad is that I should have to.
So, appointment setting has been the fun thing. We have a certain protocol for appointment setting. This is a challenge. For a while, there was nothing heard from the providers and so getting in touch with them meant that it was a consistent waiting game. SO, the game is on. We wait. And wait. When the appointment is here, we have several choices. As the phases of the opening have been set, virtual appointments were available. In a word ... aggravating and quite saddening and disheartening. While many may have been able to communicate with their providers via telemedicine, I opted out. I opted out for two reasons: my phone freezes up and I have no privacy. Too, at the time of the lockdown, I did not have good cellular or WiFi reception that I could do a virtual visit. The options for me was limited. This made little difference. So, I have waited.
I have had several appointments since the re-opening. They are very interesting. In a word? I really have not just a word. Not all of my providers have appointments set. I have to be sure to get them updated and set. My PCP and I will meet in January, I have told these "people" that their fear over all of what is going on needs to be taken care of first. I simply have no confidence that they are able to care for me. With this level of fear, apparently, they can wait to care for me. ARGS! A lot of this is on my mind.
I have expressed that I will medically distance because of the issues. What is very frustrating and what remains, is that the lack of communication is quite upsetting. I love communication. One of my providers has canceled appointments a few times--my orthopaedist. At the point of the shutdown, my appointments were canceled. There was no communication about my test results and so when everything opened up again, an appointment was set. Then! of course, the appointment was canceled again because the provider needed to have that day off. So, I have let my referring provider know that if this happens again, I will not return to the provider. I will let it go. AND! my referring provider did not respond to that. Yes, he does know how I feel and has not made any effort to try and soothe the situation about what I feel or what is going on.
In a word ... I want some change. And so, I am working toward it. Change. I do not like how things have been and I would like a different direction. I have no idea how things are going to be with the upcoming appointments with my providers. I have one coming next week and will see how things go. I have my colonoscopy coming up and we shall see how things go with that. I am hoping change will come but I am afraid that things will not. SO, I must be prepared to accept things as dysfunctional as they are. I must be willing and I am not willing. I need to seek a different way.
In a word ... daunting!
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