3 replies to this topic

[donnadavis]

      I am feeling more than a little low tonight. I went to my onc.. two weeks ago and he wasn't happy with my counts, he  told me he would let me know, I would probable need to go on a drug that is still in a study. I have tried to call for two days and all I get is a voice mail and no one has called back. Now in the back of my head I figure that they haven't returned my call because they don't have the test back but no one let's me know, which brings  me to tonight.

    I  am  totally  tired  of  voice  mail .  I  am tired  of  taking  medicine  with  no  food  two  hours  before  or  one  hour  after  while  working  in  five  other  medicines  that  must  be  taken with  food.......I  am  tired  of  trying  to  come  up  with  money  for  medications, Dr. bills  from onc. and  every  other  specialist I never had to deal with before CML. I am tired of getting better, getting worse, getting better. I am tired  of  people  asking  HOW  ARE  YOU  ?  instead  of  What you been up  to?  I am tired of not sleeping, very tired of that. I am tired of trying to move forward and sliding slowly backward. 

[Susan61]

You Go Girl:  You have every right to vent and say what you feel.  I just had to switch twice because my original Oncologist retired.  I worked for 13 years for the Oncologist who found my CML, and I got great care just like all his other patients did.  Our patients got a call no matter what the test results were.

I like the doctor I am seeing now, but these offices have no idea what we are going through and the anxiety we feel waiting for our results.

    I just had my blood work done this past week, and I called the doctors office.  I asked her if they were planning on calling me with my results.  She said we only call if the results are not good.  I told her that was not satisfactory for me, and that I know better than anyone how my numbers have been running for the past 10 years.  I told her I want a call everytime I have any tests done, and that I want a copy of the tests.  I had her FAX them to me so I could read them myself.  These girls in the office have no idea how you are doing.  She started to tell me that this and that was low.  I wanted to tell her she was a idiot, because if she knew me then she would know that these numbers were good for me and that they were consistently in this range due to my anemia etc.

   I always say you have to be your own advocate for your care.  You know your body, you know how you react to different treatments and medications.  These girls are only telephone operators in most instances to answer the phone and take messages.  Where I worked, only the nurses were allowed to call the patients with results.  We had a great office staff with great doctors.  I really miss all of it.

Susan 61

[lala]

Dear Donna,

I am sorry you are having a bad/sad night....it sounds like a nice cry might be in order!!!!  :-)  or a nice hot bath!!  :-)  Remember, some days are very hard, and then some days are easier....I hope tomorrow is an easy one for you. Hope you can get some good sleep-----

~lala