your own advocate

Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
At the end of our last episode, Carlene had talked to Dr Sabbatini's clinical trial nurse and his scheduler, who gave her preliminary approval and penciled her in for a Jan 19th appointment, re the vaccine trial at MSK. Her local gyn/oncologist's office promised to fax over her records ASAP. (That was for the edification of anyone who might have missed the back story.)

Having heard zilch from NYC by this afternoon, I called them back. Is anyone surprised that they had not received my file? So I called the young lady whose job it is to take care of those things, the one who had e-mailed me the release form on Wed (which I promptly signed and returned). "Did you fax my records to Dr Sabbitini?" I asked. No, she hadn't. But she would do it today, she said. "I thought you were going to do it Wednesday," I said. She "didn't get around to it", was the answer. OK....I said I would come in and pick them up - today. She said she would fax them - today. I said, "No, that's alright. I prefer to pick them up." She said she did not understand why I was insisting on doing it "that way". So I told her....if I fax them myself, I will know, without a doubt, that they were sent, and received. She said, "I told you I would do it today." What do you say to someone like that? I don't believe you? I don't trust you? This is important and you have not made me feel like it will get done, if I leave it in your hands?

I tried to sound nice and non-accusatory. I said I had to go by my PCP's office and pick up my thyroid panel anyway (which was true), so I would just swing by and get the records from her office, as well. She said, "How about this....I will fax them to New York and then e-mail you the confirmation sheet?" I felt a little bit like a grouchy old biddy, but I stood my ground. I asked her to call me when they were ready to be picked up.

She called me about half an hour later and told me that she had to leave because her daughter was ill, but she would finish printing my records first and leave them at the reception desk. I have since picked them up and faxed them to SK myself.

Who thinks this would have gotten done if I had (A) not called the keeper-of-the-records person today, and (B) insisted on picking them up and faxing them myself?

The point of this not rely on other people to take care of things for you. No one is as invested in your care/treatment as you are.



  • Cindy Bear
    Cindy Bear Member Posts: 569
    Super hero
    Carlene.. you are amazing.. really. I find you such an inspiration. They should give you your own reality show. I was getting frustrated just reading about this. I understand this gal is probably very busy and you aren't the only patient, but the way they are so cavalier and nonchalant about things. Does she not realize that she's dealing with peoples lives here, their futures, and that the window of opportunity is very small and could close at any time. You absolutely did the right thing. I don't think I could be that brave.
  • zinaida
    zinaida Member Posts: 221
    This is so truth, Carlene! I
    This is so truth, Carlene! I have a little bit different story. I met my new gyn/onc doctor yesterday. My appointment was at 2 pm. Finally at 3:15 she come to the room for 10 min. and run away, told me she will give me a few min to put my pants on and she will be back to answer my questions. I was waiting for her 45 min., get my stuff and get out from room to waiting area and ask desk lady for help. I told her, if doctor have no time for me I can make appointment with her for another day. It was all ready 4:15pm. So doc. did find time for me in next 5 min. and it is take her another 5 min to answer on very important for me questions. It is how I meet my new doc. first time. What I can expect from her? Lately I feel so much disrespect for me, all most from every one. I wonder, may be because I have this deadly cancer and no body needed me any more? Sorry, I'm so negative again!!! (((HUGS))), Zina
  • clamryn
    clamryn Member Posts: 508
    I agree with you
    Carlene, You did the right thing. I just don't understand people and what they are thinking. They don't seem to have any feelings any more for each other. I am always polite and try to take into consideration that they are busy but geez, you would think they would just show some compassion.

    As I said before.... you are my idol.

    A big hug to you.
  • kayandok
    kayandok Member Posts: 1,202 Member
    I agree,
    100%! YOU are your own best advocate. My motto, too.
  • effit
    effit Member Posts: 12
    Carlene that's exactly the right thing to do. I've had my own medical battles (not cancer) and have learned that if you want something done, you start out by being nice, then escalate. If nothing is done when you've almost reached the breaking point, be the b!tch that you can hahaha. Good for you!
    And another thing we all have to remember is to have somebody in your corner that will fight for you when you just aren't feeling up to it. Thankfully I have only had to step in once for my mom. She's pretty feisty lol.