Difficult Nurse (Disability Paperwork)

My mom (57 y/o with reccurrent stage 3C ovarian cancer) had debulking surgery 4 weeks ago and is antcipating follow up chemo with either topotecan or doxil. Her gyn-onc has left all the state disability paperwork to her nurse, and this person is being a huge pain. I'm not sure how to get what I need, but essentially the nurse is saying that the chemotherapy is low toxicity and she will not need to be off from work to recover. Our plan was to have her her get chemo once every 3 or 4 weeks, and take the following week off, if she needed the time. She is scheduled for 6 cycles of chemo. My mom works on her feet, walking all day long, so fatigue has been an issue in the past. This will be our 3rd time doing chemo, and from our past experiences, we know that this system has worked well enough, and given her time to recover. We've never abused the system, but we take the time she needed medically. In California where we live, we're only allowed 12 weeks, of protected leave.

I'm just wondering, what should I say to this nurse (who seems to be taking the medical diagnosis and interpreting the disability need). She seems so intent on being right, and not on doing the right thing for us. It takes days to hear back, and I can't reach the doctor--everyone has to deal with her nurse.

I've been helping my Mom through various stages of cancer for the last 4 years and have never dealt with this. It is maddening. What should I do?  

[bohan54]

You can tell her that you talked to a social security disability examiner ( I used to be one ) and were told that recurrent ovarian cancer is automatically approved for benefits.  She has no right to cause your poor mom more stress and anxiety than she already has in her life.   It will be a fine line to walk not to antagonize this b%tch, make sure you are ready with the facts and calm when you speak to her.  The doctor should be notified if she continues to give mom trouble.
Sharon

[Katie116]

It's awful to be sick and have someone working against you rather than for you. Fight! And right the Nursing Association and your Senators and Reps.

[busgal]

Thanks so much Bohan! I will let her know this information, in a very nice way. I have to say, it causes me so much stress to deal with her becasue I truly feel like she is just trying to be difficult and give us the least she professionally can. I will post what happens.

[busgal]

Okay, just left the nurse a message...and hoping for the best. Will let you know. (I was so nervous!)

[bohan54]

Hope you don't have to just go in there!  What an avoidable hassle!

[JC145]

I am currently on topotecan and it definitely causes exhaustion.  Chemo week (5 days in a row) is not too bad.  I can do things in the morning and get chemo in the afternoon.  However, the 2nd week, the exhaustion sets in and I MUST take a LONG nap every afternoon.  The third week is not too bad, but I would NOT have the energy to be on my feet all day.  Her red count will definitely go down .. and so goes her energy.  

It's no skin off the nurse's nose if your Mom gets disability ... she's just lazy.

[bohan54]

No word yet?  Time for the big guns!

[Ramsay14]

OMG, I can't believe that you have to go through this.  It is so wrong for this B&$%H to put you through additional stress.

[busgal]

Finally, the nurse called back, and said she would update the paperwork...and that she was leaving for vacation tomorrow, and if I could come today she would do it, otherwise I would have to wait 3 weeks until she came back. Luckily,my work is a little flexible, and I made tot he hospital in time to meet her.

How completely unnecessary. Its just zapped the last of my energy and patience--doing around the clock care, keeping up with the paperwork, household stuff, and then she had to throw pins in my tires. Anyways, problem resolved.  

Thank you all for your support and helpful suggestions. Bohan, referencing I had talked a disability examiner really made the difference I think--thank you! And, tank you for the information on the Topotecan and other chemos. I think we'll advocate to start with Doxil. I'll make a new post about that.

[bohan54]

This post made my day and it is only 7am!  Let's hope Doxil is the answer for Mom.
Sharon