POOF went the appointment as it flew into the ether, flapping its little wings.
When Ernie was discharged on Friday afternoon they of course gave him a long list of follow up things to do. Stop taking this. Start taking this. See this doctor, see that doctor, etc. Urology called first thing Monday with an appointment time. No word from the Cancer Center. Ernie called and they said they had to find a time to fit it into Vasireddy’s already full schedule. Got it. We didn’t hear back so Ernie called again the next day. They gave him an appointment time of 10:00 this morning. Then, later, chemo appointments popped up on his calendar for next Tuesday. Nobody let us know they were there, although perhaps he got a MyCarle alert. I’m not sure but I doubt it. I figured we’d talk about Ernie’s upcoming treatment and, oh, how to avoid another lengthy stay in the hospital, when we saw Vasireddy today.
Yesterday afternoon we had a phone appointment with somebody from the hospital’s transitional care team (by the way…they were the ones who managed to wrest Ernie’s antibiotics from Walgreen’s clutches, so kudos to them for that). She noted our appointment today and the chemo appts on next Tuesday. We went over meds and bloodwork and I complained loud and clear about the lack of clear communication and the fact that I actually said the words, “I need help,” and got nowhere with that. I was told by a nurse from Vasireddy’s office (I believe) that a case manager would contact me. Nope. Not that day, the next, or this week. I asked a nurse at the hospital if there was a case manager or social worker we could see. Nothing. I asked for assistance with the necessary steps to get a friend listed as a proxy or whatever, so she could talk to people on his behalf. “Oh, sure,” I was told. Nothing.
Nothing. Nothing. Nothing.
I don’t think I quite understood some of her response to my complaints. Part of it seemed to be that Ernie hadn’t asked himself, the other part seemed to be that when patients were alert case managers didn’t necessarily step in. I have no freaking idea. I just know that WE ASKED to see somebody and got no response. I just wanted somebody who could direct me where to go to get answers I wanted. I don’t expect anyone to have all the answers…just help me find them. The nurses and doctors I asked all pretty much gave me vague excuses such as “I’m not an IT person,” when I asked about the MyCarle test results. She asked if she should have the case manager call me again and I kept saying, “But she never called me in the FIRST place…there is no AGAIN.” We have another appointment with transitional care next week. In the meantime Ernie has to go get bloodwork done today, which we figured he could do when he went to the Vasireddy appointment.
Late last night, as I pondered whether I had the energy to take a shower before bed, I decided to doublecheck today’s appointment time because I’m a worrier and thus, I worry.
The appointment was gone. There was no message, there was no email alerting us to any changes in Ernie’s MyCarle. Nothing. Just POOF.
Now, I can understand…once the chemo was set up and we see Vasireddy then, someone figured we didn’t need to see him today. OK, but, uh, don’t you think you should LET THE FUCKING PATIENT HIMSELF KNOW THAT? If it weren’t my obsessive doublechecking, I would have been clomping my walker across the damned Cancer Center lobby this morning for nothing, and oh lord, you think I’m pissed now?
I gotta say, you all know we ADORE Dr. Vasireddy but I have found it difficult that we have had no contact with him since the morning of April 18 when he saw us into the infusion suite for Ernie’s Gemzar infusion. It was, of course, later that day Ernie went to the emergency room and ended up being admitted.
The last time Ernie had been in the hospital for any length of time we saw the doctor several times. The Oncology NP finally told us that doctors don’t do that anymore. OK, I get that. I’m sure the man already works WAY too many hours, so yeah, OK. When we had talked to Vasireddy on the 18th he’d said he’d call us when he got the results of the liver biopsy. Didn’t happen. When I questioned (um, complained) to the Oncology NP she said she didn’t realize that we hadn’t gotten those results. She looked it up and said it was prostate cancer, not bladder cancer. OK. Yay. Team Prostate FTW. The results still are not in MyCarle unless I comb through the pages of notes that finally appeared after his discharge. Let’s see, there are about 35 entries and each one is multiple pages, so…a whole lot of pages. Not that I haven’t read them all but it doesn’t seem to be the most effective way of letting a patient know which kind of cancer has invaded his liver.
So now we wait for Tuesday when Ernie will again get the Cisplatin which sent him to the hospital for 12 days. We have no idea of whether it will be the same dosage or, well, anything. I assume it will be adjusted. Right? We have no fucking idea about anything. I don’t even feel like a marionette anymore. We’ve moved past that. I don’t know where or what we are now.
While I’m not questioning Ernie’s quality of care, the lack of communication and support has just been so disheartening. As I said to the transitional care person, I’m a member of Ernie’s medical team and I’m an important member. That may sound obnoxious but it’s the truth. We’ve been living with this cancer since 2004, when the boys were just babies. The disappearing appointment (it’s probably flapping its little wings flying around with the Barnes appointment that also disappeared into the ether with no notice) just felt like the last straw, even though I know there are many more straws coming. I couldn’t stop crying last night.
I can’t even bring myself to type my regular end of post phrase today.