Since last Thursday I’ve been trying to get an answer on the results of the CT scan that was ordered by my cardiologist. What will the results of this scan mean for my chemotherapy starting on Wednesday? Since I won’t be seeing the oncologist until Tuesday, when this will be explained, should I go ahead and have the central IV line surgically implanted on Monday for the chemo only to find it needs to be removed in order for my heart to be fixed first? (Yes that sounds crazy but since no one would talk to me up to yesterday I’m forced back on my experience being considered crazy until I actually die–and then get medical attention).
Yesterday, Weds I went,out of frustration, to my doctor’s clinic and asked if they had received a report from my cardio or oncologist. Yes, a report had come in last Thurs afternoon concerning the results of the CT and a recommendation from the cardio’s office. No one called me about this because the message was addressed to my doctor and privacy rules forbid a nurse or receptionist from passing the information on to the patient. Since my doctor will be back at the end of the month there was no reason to tell me anyway as it will be cleared up then. (Well, “then” plus the normal 5 week wait to get an appointment with the doctor–about 2 months after chemo starts). When city doctors tell me to “see my doctor” they don’t understand that doctors are seen by appointment only—not by patient need. A person can walk into the clinic and wait around 6 hours to see any random doctor who has a few minutes but can advise or treat because you aren’t their patient.
Based on the information from the clinic I spent the afternoon yesterday calling the cardio and the cancer clinic in the city where no one would answer my question about results. After about the 5th or 6th person telling me they could see the report, but not read it to me because it’s “confidential” (and can’t be spoken over the phone), I just broke down and gave up.
About an hour later a doctor from the cancer clinic called me and said their nurse had reported that I was “in distress” and could he help? I told him the story of my last experience with my heart made me serious about being told about my condition and simply wanted to know the results and recommendations of tests on my own body. He told me the results but couldn’t give the recommendation on the phone in case I wasn’t me. Results were: I have a stable “pseudo-aneurism” on the incision line from my last hast surgery, which puts me at higher risk with chemo. No more could be said.
This afternoon the receptionist at my doctor’s clinic snuck me in to see their new doctor. He was able to tell me the actual results: Yes, I have a pseudo-anuerism on the incision line on my aorta near my replacement valve #2 and there appears to be fluid accumulating there. Yes, I will need open heart surgery again to fix this soon. But, since there are probably malignant cancer cells still left in me from the removed tumor, the risk is least for chemo and then heart surgery in the new year.
Since no one will really believe how fucked up it is to live here with all these absurd rules I’m gong to stop writing about my medical condition. It just brings back the horror of dying while people stood by and watched and I can’t handle it. This is what happens to a person who lives at a distance away from people why are convinced their system serves everyone the same and is replicated by distance education people who ignore this factor too.