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Home Care Visit

Posted by benbeatscancer@gmail.com on June 22, 2020 at 6:20 PM

Home Care visit today. I am grateful that they called me multiple times to set something up. I know I have missed a lot of calls lately. Sometimes I just can't face talking on the phone. 


We showed the tour of the house, then sat on the deck. We talked about where we are and how it is for Ben. Ben doesn't like being in pain. He doesn't like being groggy, either. The team talked about pain, comfort and drugs.


I shared that my main concern was getting changes made with medications and routines. It feels like we hit CRISIS (in the ER), then we share to Dr. Family for changes in meds or routines. It feels very knee-jerk and upsetting. I feel we are the pivotal point and this can't quite be right... can it? It feels like our systems don't talk to each other and we are stuck in the middle. I choke up as I share this with the team. It surprises me. I thought I could share our facts pretty easily now. Without tears.... 


They offer some ideas for changes and tell us they can be the advocate between us and doctors when/if needed. They ask about our drug coverage and when I start to explain the MSP issues, they recognize us. Well, not us.. but our file. 'We have been fighting for you already. It's been so heartbreaking for us to battle without success. But we keep fighting on your behalf.'


I'm somewhere between grateful and embarassed. I am so tired of this issue. I cannot wait for July 1st.  I cannot wait for full coverage to return. We are assured that all of our chemo bills will be covered at that point.


It's been a while since I spent time thinking about our medical bills. I've been ignoring the yellow SECOND NOTICES in our mail. They are a heavy weight that I just don't want to sort out right now. Eventually, I will have to.. but not today...  


I feel a bit better after their visit. But once they have left, I realize I have no idea when I will see them next. I don't have a contact number or instructions on how to connect with... well, anyone. It feels confusing all over again. 


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