So, the doctors at Dana-Farber are great. They really met me half-way, understanding at once that I am able to comprehend medical stuff and deal with it fairly well (at least on the surface -- we're coming to that).
The systems at Dana-Farber were not reassuring. When I went to check out from seeing the three doctors, the tests they had told me they were ordering were not in The System, and people had to be paged to confirm what I remembered.
And when I got down to the lab, two out of the three blood tests ordered were missing, and I had to be insistant, and at that point I lost it.
How is a person supposed to feel safe if the best cancer institute in Boston can lose a set of test orders twice in less than four hours? And is it supposed to reassure me when you tell me that it happens all the time? What if I'm unconscious or drugged and it's up to Bravest to remember what's supposed to happen? What if he's not there?
The only solution I can see is to ask for my own copy of every order, so I can give the official paperwork to the scheduling people and still have one copy for myself. Which is going to be a pain in the ass, but this is not happening to me again if I can prevent it.
In slightly better news, apparently I am the Very First Person to fill out a patient survey on line and send it back via email. So I told the doctor who told me this that they'd better think of a way for people to do that, because I am the edge of the next wave, and those who come after me will expect things to work like that. So, mission accomplished, perhaps!
Hi Lauren, I am sorry to hear that you are facing this challenge.
ReplyDeleteI have had some experience with the DF facility at the Longwood complex. Is this where you have been seen?
Not sure you would be interested in (or were made aware of) DF satellite facilities in other parts of the state. I was seen at the DF in Milford and I will attest for the quality of their care and professionalism. Also, The Breast Center at Milford is one of the 5 nationally accredited breast centers in the state.
If I can help in any way, please let me know. This is scary stuff and the decisions to be made are overwhelming.
It helps a great deal if you can trust your doctors and staff.
All the best,
Andrea
Sorry Lauren, here is the DF link:
ReplyDeletehttp://www.dana-farber.org/About-Us/Satellite-Locations.aspx
Yes, I was indeed at Longwood, which is a bit of a cancer processing factory. Unfortunately, the satellite sites are not good for me, as I am north of Boston but miles and miles from Londonderry, NH.
ReplyDeleteThank you for the kind thoughts.