September 12th, 2016

Waiting, Waiting, and Waiting

“The nurse will contact you sometime today”
After I notified to go back to the vaccine trial, the patient care coordinator of the vaccine trial emailed me on 8/30. Waiting patiently for two weeks, I was disappointed again this Monday without finding any email from NCI. As I emailed again to ask what was going on, the phone call from the clinical nurse specialist came in right away.

” You haven’t submitted the progress note (the treatment history) yet. Ask your doctor to fax it,” said she.

I didn’t? I have thought I had sent all information a couple months ago. If I had missed something, I wish you had told me then—thinking so, but I said “OK.” After I hung up, I emailed my oncologist requesting the progress note, but the out of office reply came promptly.
By then I noticed, I had the medical record department send all the documents including the treatment history through email. As I checked the old emails, sure enough that it was done on 7/1 and since the attached documents would have expired in 12 days, I also had sent a reminder to her to download before the expiration. Because I didn’t hear from her, I sent the copy of email to the director and received the reply saying she would make sure the documents would be downloaded.

” I believe I sent the treatment history on 7/1. Will you please check if you have it or not?”
I emailed the nurse but again no reply. So I phoned. She answered, but said bluntly ” I have an emergency patient waiting. I can’t access the document. Just send the fax,” and hung up though I wasn’t finishing a sentence. She is the clinical nurse specialist. Probably I will see her often once the trial starts. Yet I already have a bad impression.

Meanwhile the patient care coordinator sent me the consent forms again saying the previous consents I signed were too old, so I had to sign them again. I was getting weary. I thought I could avoid this redo process, but I guess not. Instead of waiting for the oncologist, who was away from office, reply, I should just go to the medical record and ask to fax the documents once again–I thought.

Looking at my difficult face, George told me, ” Being a patient is your job.” He is right. I have time to take care of this. I grabbed the car key and drove to the medical records.

Yet, the bad luck continued. Standing on the line in the medical record office, right before my turn, I got a stomachache and had to go to a bathroom. As I was afraid, when I came back, the line became longer. “Kathy, be patient,” Telling myself, finally I walked up to a window.
“Will you please fax them?” I asked, but the lady told me, “We don’t do fax.”

I understand that fax is now out of date, but the research nurse asked to fax. My choice is to pick the documents up and fax by myself.

“How long will it take to pick up?”
“3-5 days.”

So it could be next week. Ahhh. My patience is running out. Oh Lord, how long do I have to wait? Help me before I become a grouchy old woman!