When I was diagnosed in 2002 I did not understand why no one seemed interested in determining what effect chemotherapy might have on the brain and the nervous system. When I asked my onc, his response was that in his decades of experience with it, "only a few had been totally disabled" by it. This is a guy who is beloved by physicians and patients alike.
I could not put the pieces of what I was seeing and hearing together. They didn't fit. I went looking for someone who could at least administer some type of standardized mental acuity testing for me prior to treatment and subsequent to treatment. The only person I could find who would do it was unable to do it until after my first treatment of 6 treatments, and it was not covered by my rather good health insurance. She wouldn't even take credit card payment so I had to dish out $250 in cash. I have the results of that initial testing to cherish as my feeble attempt at trying to make some kind of logical situation out of it all, when that actually was the responsibility of my health care providers -- my PCP and my oncologist -- but they took no interest in it.
After my third treatment, very early the following morning I was working quietly at my computer one minute and then the next my eyes were still open but everything was pitch black. I could feel a wave of cold fluid moving up the back of my head, starting at the base of the skull and rolling over the top of my head. I remained silent and blinded for about 2 to 3 minutes and then my vision returned. For several days after that my fingers were slow to receive commands from the brain in typing at the computer and would often tangle up.
I tend to be a person who does not freak out in circumstances like that. Yet as a chemophobic in general, I was very apprehensive about the remaining treatments. I mentioned it to my PCP (an excellent doc in most ways). He listened, but as a professional who is focused on getting a patient through treatment he did not respond to it and moved on to other concerns, as if it was not something to be concerned about. It never did happen again.
But I wonder what it represented physiologically, and I still think providers have an obligation to investigate more thoroughly a report such as that from a patient, or at least include it in the narrative documenting that patient's visit. No such note was made. A patient has no opportunity to insert that "on the record", and a patient who is dependent on the care of a PCP/coworker is reluctant to risk initiating conflict. On completion of treatment I was not retested with the same mental exam but the results would have been interesting. -- Lois