Goodmorning all

rjjj
rjjj Member Posts: 1,822 Member
edited March 2014 in Breast Cancer #1
I will tell you what! my care team needs to get organized. I have had an on-going pain and swelling in my arm and hand diagnosed with lymphedemia. The sleeve that was ordered was the wrong size and the first time i put it on my hand and arm puffed up huge! I made apt. with the Dr. who just peeked under my shirt and no real exam..sent me to Physical therapy to try a pump that pumps fluid back to lymphs for drainage. PT didn't have time for me that day and resheduled before i was to get an ultrasound to check for lumps..well i had to go in and tell them i think we should have the ultrasound first before you start pumping around ..which they agreed and canceled apt. again. I got my ultrasound and then went down for my 3rd chemo-treatment (half-way done YEAH!) the report of no blood clots came back..very good to hear and then back to physical therapy..they had the pump all ready to teach me and to take home and rent if need be. only thing was they had the wrong plug-in for the pump and could not find another so left empty handed again. They will call me..HMMMM..I told them i was ready to FLIP MY WIG! They thought this was funny (i didn't but laughed anyway) so
guess now i continue to keep my arm elevated until they call?? this has been so frustrating. Does anyone know about these pumps (they are like blood pressure cuffs that massage the fluid where its supposed to go. They surgeon did take 21 nodes (6 pos.) but still i have quite a bit of feeling loss. and fluid is gathering or my body is changing under my left rib cage..If anyone has been through this please let me know. I wonder if those machines are really expensive to buy.

I know..Blah..Blah..Blah.. so sorry for going on. My treatment went OK and i am wishing MIMI and Lisa AKA Moopie...a good day on FRi ( think that is infusion date? Just the thought of one more down makes me happy despite other problems. I will be thinking of you tomorrow. And as always wishing all the best of all the blessings God will give you!

Love and hugs to all of you don't know what i'd do without all your helpful info and support. You Rock!! Jackie

Comments

  • mimivac
    mimivac Member Posts: 2,143
    Ugh.
    Jackie, I feel your frustration. That's really awful; it sounds like things a little disorganized there. I don't have any advice re: the pump, but I do encourage you to keep at them. In situations where offices are disorganized or overbooked, the persons who do not accept things as is often get better care. Everyone should get excellent care, but this is, unfortunately, the truth. You have to be your own advocate. You deserve to get this taken care of without undue delays. I hope things get better from here on.

    Thanks for your good wishes. I will be on my 4th chemo and Moopy on her 3rd, I think. We are all half-way there!! Hooray!

    Mimi
  • sausageroll
    sausageroll Member Posts: 415
    mimivac said:

    Ugh.
    Jackie, I feel your frustration. That's really awful; it sounds like things a little disorganized there. I don't have any advice re: the pump, but I do encourage you to keep at them. In situations where offices are disorganized or overbooked, the persons who do not accept things as is often get better care. Everyone should get excellent care, but this is, unfortunately, the truth. You have to be your own advocate. You deserve to get this taken care of without undue delays. I hope things get better from here on.

    Thanks for your good wishes. I will be on my 4th chemo and Moopy on her 3rd, I think. We are all half-way there!! Hooray!

    Mimi

    So sorry
    I know nothting about the pump, but it sounds as though you are getting the run around. At my hospital you can have a nurse advocate who will work on your behalf and take that worry away. Maybe ask your nurse practioner or social worker to help you. Good luck..we are with you in spirit and all those who have infusions on Friday.
  • Mikes Sunshine
    Mikes Sunshine Member Posts: 129

    So sorry
    I know nothting about the pump, but it sounds as though you are getting the run around. At my hospital you can have a nurse advocate who will work on your behalf and take that worry away. Maybe ask your nurse practioner or social worker to help you. Good luck..we are with you in spirit and all those who have infusions on Friday.

    It Stinks
    Jackie, I am so sorry you have to go through allof this. It stinks!!!! As if you haven't been thru enough already. I think sausageroll's idea of asking the social worker for some help might work. I will be thinking of you over the next few days and hoping you will be feeling much better soon. I am excited that you are half way to the end of chemo. Love, Nancy
  • rjjj
    rjjj Member Posts: 1,822 Member

    It Stinks
    Jackie, I am so sorry you have to go through allof this. It stinks!!!! As if you haven't been thru enough already. I think sausageroll's idea of asking the social worker for some help might work. I will be thinking of you over the next few days and hoping you will be feeling much better soon. I am excited that you are half way to the end of chemo. Love, Nancy

    Thank you
    Thanks for listening to me vent. You are right i do need to be my own advocate. And the squeeky wheel does get the grease. Hope you all have a good night and sweet dreams
    God bless
    Jackie
  • Aortus
    Aortus Member Posts: 967
    rjjj said:

    Thank you
    Thanks for listening to me vent. You are right i do need to be my own advocate. And the squeeky wheel does get the grease. Hope you all have a good night and sweet dreams
    God bless
    Jackie

    Moopy and I are VERY upset about this
    We're sorry to hear you had to deal with such uncaring "caregivers." If you wouldn't mind, could you tell us the name of the hospital you are dealing with? I would be happy - more than happy, in fact - to research who is in charge of quality control. At both of the hospitals we've dealt with, St. John's here in Springfield and St. Luke's in Chesterfield, MO, the hospital leadership was very concerned to know whether ALL aspects of the care were appropriate. We're glad your infusion went well and hope you get the treatment you need and DESERVE for your lymphedema as soon as possible!

    Best,
    Joe (and Lisa too)
  • mmontero38
    mmontero38 Member Posts: 1,510
    So sorry Jackie that
    So sorry Jackie that everything seems to be so disorganized. Was hoping that everything would have been worked out by now. BUT...... like you said the squeeky wheel gets the oil so start squeeking. I hope everything goes smoother from now on. Glad you're treatment went well. Hugs, Lili
  • chenheart
    chenheart Member Posts: 5,159
    Wish I knew.....
    I don't have any advice/info about the pump either, but all I could think of while reading your post was:

    "Aside from THAT, Mrs. Lincoln, how did you enjoy the play"????

    I am so glad we all have one another: it is grand to be able to vent with those who truly know what we're talking about!

    Hugs,
    Claudia