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Yes I’m in Ct. Called the CT center on my own, they have an opening for this Wednesday, they let me have it. Called my radiologist to tell them I got an appt sooner, “It is our job to line up your treatment schedules, not yours” Me “Well I think you stink at your job since you told me there was nothing available till the 22 and I got one for Wednesday”. Hope I didn’t make my situation worse. 

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You are 100% right! I’ve been a medical advocate for both my parents and my brother and I never would have let them be treated like this during a serious health issue. First thing tomorrow I’m requesting a different nurse navigator, and a phone conference with my radiologist ASAP. Really sad when you forget to value yourself as much as you value your loved ones. Thanks!

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Sally,

You are 100% right in moving forward!  We had a similar situation with my Mom in NJ, after a tissue biopsy didn't yield enough tissue, the interventional radiologist wanted to reschedule the second attempt a month later (this is after my mother had to wait four months for an appointment due to the COVID back log).   I was on the phone with my Dad when he got this news.  He's normally a really easy going person, but this situation put him over the edge.  I haven't heard him yell like that since I was a teenager.  Mom got an appointment two weeks later.   Bottom line, the squeaky wheel gets the grease.  Unfortunately, there's no sense of urgency from a lot of the medical community.    You go girl!

Michelle 

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Changed my nurse navigator today! The new one seems very knowledgeable, seemed to be asking me every question imaginable and is going to meet at my CT tomorrow to introduce herself. She told me I can request a copy of all my reports, the doctors notes and to request that going forward I want all things in the future. This way if something doesn’t make sense she will go over it line by line with me. I originally had confidence in my radiology oncologist. He’s the head of the department so I thought great but now I’m thinking he might have too many patients and might be letting things fall through the cracks ( like me!). Have a conference call scheduled for tomorrow with him. Going to lay it all out. Called my second opinion doctor and asked if things didn’t work out with this doctor could he take me on and start treating right away. He said yes so we’ll see where I land. Rower Michelle I think my bad experience might be related to the COVID pandemic like your mom’s. Thanks for all the encouragement everybody, it really helps! 

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