Camul

tufi000
tufi000 Member Posts: 745 Member
in Breast Cancer #1

Carol!  Ninja! Sensai!   PLEASE be there!!!!!

Lovin you

Sherry

Comments

  • Apaugh
    Apaugh Member Posts: 850 Member
    #2
    Prayers

    Prayers for peace and comfort going up.

    Hugs,

    Annie

  • aisling8
    aisling8 Member Posts: 1,627 Member
    #3
    Love you, Carol

    Sending love.

    Victoria

  • lintx
    lintx Member Posts: 697
    edited March 2017 #4
    Carol

    Thinking of you daily and praying.

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #5
    Sending hugs Carol

    You are in my thought and prayers daily.

     

  • camul
    camul Member Posts: 2,537
    #6
    Thanks you all. This all sucks.

    I can honestly say I am really depresse. Hospice nurse says it had so much ch to do with constant

    pain for over 5 months straight.  I have some new options, one is a continual Fentanyl pain drip, or upping

    the patch from 200 to 225, or 300, of trying something else for breakthrough pain, but its

    not so much breakthrough as it is continual.  I am frustrated with the whole thing.  I knew there would be pain but I figured upping the Fentanayl and hydromorphone would help longer than about 8 days...   . She was here yesterday and say the withdrawals after about 50 hrs.  When they upped the Fentanyl it went from every 48 hrs @ q 100 mg to 200mg every 72hrs. It works for about 50 hours s and the sweats and chills start.  When she was here it was about 52 hrs, she said now she knows what I as saying. She texted my pain dr whom is the head of the hospice cenprogram I chose and she said have her go back to 48 hrs, they have n get lasted 72 hrs.

    then it is figuring out if the headaches on both sides are from cancer in both lobes now..... still

    think to Vegas and a few shots of tequila Would

    be a lot more fun.  But at this point. I Ed hospice to 

    send a therapist who is experienced with working with the

    chronic pain and end stages.

    Love you guys!  it was 61 degrees today and 65 by Thursday, still jealous of my CA friends! Lol. Love the sunshine.

  • tufi000
    tufi000 Member Posts: 745 Member
    #7
    WOOHOO!

    Sensai, I went through this with my brother. My life partner has no empathy in his dictionary but was a med Air Force pilot rescue paratrooper in Nam. And the one thing he has always told me..DO NOT BE A MARTYR TO YOUR PAIN. my dear, do whatever will work and do less internal analysis in order to enhance some sense of freedom. That would be difficult because it is that analytical skill that makes you the benefit to everyone here. Elevate to complete sefishness, it is time for you to mentor yourself.

    Lovin' you Sensai

    Sherry

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #8
    Thanks for checking in

    I miss your facebook posts.  

     

    Xoxo,

    Jean

     

  • Teach76
    Teach76 Member Posts: 354 Member
    #9
    Prayers and patience

    Hi, Carol.   I am so in awe of your continued patience. . . May the newest plan of pain management bring you brighter days and a bit more energy to do what you want.  Continued prayers!

    Are you sure you don't want to visit us on the east coast this week?  Expecting 6 - 12 inches of snow on Tuesday!

    Kathy

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #10
    Thanks for the update

    Carol, I'm so sorry you're feeling down.  You lifted my spirits just hearing from you.  Thank you, Sherry, for calling her out.

    Suzanne

  • peony
    peony Member Posts: 306 Member
    edited March 2017 #11
    Sending you vibes for

    Sending you vibes for strength Carol! Hoping Spring will bring you some relief.  

  • camul
    camul Member Posts: 2,537
    #12
    Thanks you all.

    I have a new empathy for depression.  I have continual pain, and spend most of my life in bed.  I don't feel the pain when I sleep.  My hospital CEO nurse shows up late or keeps rescheduling. Today's appointment is now tomorrow. Last Thursday turned into Friday then Saturday.  When I tell her the pain level it is always just up the meds, that works for a week or two then it isn't back.  

    I am just totally frustrated.  I need a therapist who is experienced with end of life cancer.  I have seen one where I was her first stage iv cancer patient, she was asking many questions but couldn't answer as she had no experience.  Then saw another one who ended up being an intern but her mentor (she has to work under a lic need therapist, was no where on site!  With hospice, I have to see someone on their staff, have been telling my nurse for weeks I am really down, still have no appointmen!

    Lets see how tomorrow goes!  

    Hugs,

    Carol

  • tufi000
    tufi000 Member Posts: 745 Member
    #13
    I learned depression is not sad

    Depression is SO NOT like being sad for sure! It's far worse. Wow!

    Before they knew it was brain tumors, docs sent me to a "therapist". After some discussion, she asked me if she could show me CBT (Cognitive Behavioral Therapy) and I said ok. So she started her thing. When she asked if I understood I said...Yeah, This is psycho-babble for the Serenity Prayer, my mom raised me on it and you get paid for it. She was done with me.

    My regular doc team was hysterical!

    Sensai, I am trying to remember my Mom, my bro, who told me they weren't suffering or afraid. My mom was a witch, so I am certain she just cast a spell. My sweet bro, he did it with chocolate cake and a LOT of sleeping.

    I wish I had an answer for you as you always had for us. If not an answer, at least options.

    Sensai, in my meager, insufficient way I hurt with you, for you, and love you

    Rip cord through life Sensaid!

    Sherry

  • Apaugh
    Apaugh Member Posts: 850 Member
    #14
    Dear Carol

    I am so sorry you are going through this. 

  • jennytwist
    jennytwist Member Posts: 896
    edited March 2017 #15
    Carol

    Sending peace - gentle and tender holding you -

    much love, Jenny

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