Scan Limbo. Warning: frustration & venting ahead with no answers

**Updates as of Friday 2/5** 

E-mailed Dana Farber, who got back to me with info the morning after an evening email (they have their stuff together, and I miss them). They sent the scans on the 27th, which I told Christ, who then repeated it back to me when they returned a call. Christ acknowledged they have the CD, but I couldn't convince the person to check the system for upload "I'm sure so and so took care of it". I was told comparisons had been ordered, and I should have results "next week sometime". Of course I'm calling Monday (14 days post scans). 

I keep thinking I should take this venting post down, but I think it is important for a couple reasons (1) you are your own best advocate, and you have to keep pushing in a system that is silo'd beyond belief. Also, I heard the term "silo'd" used way too much at RBC lol. 

(2) To acknowledge that this is frustrating, and that it starts to amount to a part time and at times, full time job to keep up and just get the care you need, and that's not just for cancer obvs. 

**Begin original post**

Cancer can be frustrating; the healthcare system can be frustrating as anyone who has dealt with it knows. I am not the first, I am not alone, and I won't be the last. But. This. Should. Not. Be. This. Hard. 

I am currently sitting in the tenth day of scan limbo because Christ hospital can't get its shit together. No, I don't really want to know if my cancer has progressed or not on this treatment. Yes, that was sarcasm. 

I asked during intake if they needed me to do anything to get scans, nope.

I asked the oncologist a week before my scans if they had comparisons; he said if they didn't he'd let me know. Nothing.

The day of my scans I get a call from the NP, "we don't have your scans for comparison". I did not lose my cool, but I did express frustration. 

I've spent the last week and a half emailing and calling Christ and Dana Farber. Yes, I should have grabbed CDs before I left MA, but there were a few things going on, and I wasn't thinking this far ahead. So I'm kicking myself for that :-/

I learned yesterday that the scans can't be sent electronically (even though they both use Epic). My oncologist just checked after my Monday meeting with him (seven days after my scans) that consisted of him telling me that the written reports are basically useless, and we can't know anything without a radiologist doing a side by side comparison. Also, a wasted trip to the office.

I just sent a somewhat frantic email to my oncologist at Dana Farber begging them to check into it.

So I want to update the blog with some news, and hopefully good news, but right now I'm Schrodinger's cancer - both responding and not responding to treatment at the same time ;-)

 

https://www.sciencealert.com/schrodinger-s-cat