In Hospice care

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  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #22

    Yesterday, Hospice started me on antibiotics because I have Pneumonia, again.

    Last week, I was supposed to have my intravenous immunoglobulin in the hospital, but those infusions, which built up my partial immune system ( genetic defect I was born woth). I can no longer get them because they've been cancelked. My Terminal status means I just do not need those expensive life extending treatments anymore .So, pneumonia will come , and sepsis too again if we don't fully treat the pneumonia. My Hospice pharmacist stays in touch with me via email and he told me I may have to go back in the hospital for intravenous antibiotics if these don't work or I can't tolerate.

    There is something I want to touch upon here, and that is, for months, and especially the last few weeks, I felt that something Systemic was going on in my body, dragging me down. It became very very dramatic. The Weakness and Extreme Fatigue that gripped me, was very telling. It was just like with my first primary ( before I had the G tube for nutrition, and I lost ability to swalow).

    This new cancer, an extensive Metastatic SCC, isn't anything like the 6 recurrent SCC tumors I have already had, some of those occurred after my Radiation treatments. They survived the IMRT/ VMAT radiotherapy!

    No, this Metastatic cancer came upon me and Dragged Me Down. I FELT it. Nausea constantly, ...... I would nod off and fall asleep, anytime I sat down somewhere ( like while driving!! At traffic lights, I fellasleep. So I quit driving)... I fell asleep standing up even. Bizarre. My body wanted to quit. Doing anything became a struggle. My weight dropped ( I'm still 63-64 pounds.. ). And I was stumbling , even Falling down at times

    I knew something had me in its grip, I just didn't quite know what. Was it my lung disease? I didn't know . But then I saw this bleeding ugly thing in back of my throat.... It didn't explain my symptoms, but it gave me a clue.

    So, please take note. If you are a survivor of HNSCC, and you begin to experience a decline in our normal baseline....... If you are slipping backward ...... Don't ignore it. Bring it to attention of your doctor..

    Crystal, in Hospice.


    ,

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #23

    Dear crystal thanks for posting an update on your current status.

    I am sorry to hear you have pneumonia again and I hope they can get it under control with antibiotics. This latest cancer must really be hard on you, as you say dragging you down and wearing you out. You must be tired if you fall asleep standing up. You didn't mention any problems with pain so I am assuming that is under control.

    Thanks, Crystal, for your knowledge and tip on being aware of a decline in our normal baseline.

    Also, Crystal, you are in our hearts and minds and we are thinking of you and praying for you and I certainly hope you have comfort and peace and can rest well at night. I hope you are getting some nourishment in too as that may help a bit with your system weakness to put it off a bit.

    Thanks, Crystal, and please keep us updated as you feel up to it.

    Take Care-God Bless-Russ

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #24

    From my Head & Neck Oncology Surgeon, whom had been my doctor since 1992, when I came here in Pediatrics ....::

    hey Crystal, I realized I never answered your email.

    My apologies. To answer your question, your scans show that the tumor occupies your right tonsillar area, ...it invaded the entire Soft Palate,...it extends into the remaining tongue next to voice box, then it invaded the upper part of your voice box and down the side of wall of your throat on the left. That would explain many of your symptoms of not being able to talk or swallow.


    I'm so sorry. You are in our thoughts and not a day goes by that we think of you and your strugg les.

    DR. B


    It's a massive tumor.... No way to contain it.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #25


  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #26

    Hey, beautiful,

    As always, I’m thinking about you, and hoping you find some joy and happiness in this day!

    Curt

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #27

    Hey Doll, hope you are hangin in there OK.

    You're not forgotten, you are still in my thoughts and prayers every day.

    Hugs🤗🤗and Love💔 your way, stay strong like you always are Russ

  • Dagney1924
    Dagney1924 Member Posts: 30 Member
    #28
    https://csn.cancer.org/discussion/comment/1696048#Comment_1696048

    Thank you. Praying for your peace and comfort.

  • Mavish
    Mavish Member Posts: 93 Member
    #29

    Send to love and prayers Chrystal.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #30

    Today the hospice social worker Alex came and an R N came as well to check me out.

    ?For the past 5+ years, I have used a very high quality Pulse Oximeter. Because of repeatedly having significant Pneumonia requiring admissions, etc. Now I have Bronchietasis as well, In the past week, my Oxygen Saturation has been low. In the middle 80s at times. Not good, no wonder I get short of breath.

    Today, the nurse told me I have to start hooking up to Oxygen, I have the big units here, on wheels, but I cannot carry one up the stairs. My 14 stairs to my bedroom and bath...... So, at least for now I will use it downnstairs, I guess.

    That's all for now. .from Crystal, in Hospice...

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #31

    Thanks for the update and for keeping us informed.

    Wishing You The Best

    Take Care-God Bless-Russ

  • mel_
    mel_ Member Posts: 4 Member
    #32

    Sending a hug. ML

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #33
    https://csn.cancer.org/discussion/comment/1696336#Comment_1696336

    Thank you, thank you!!! I would welcome hugs today. 😉 Crystal

  • Mavish
    Mavish Member Posts: 93 Member
    #34

    Thinking of you Chrystal. Sending you love and prayers.

    M

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #35
    https://csn.cancer.org/discussion/comment/1696364#Comment_1696364

    Thank you so much for this message.

    I'm quite uncomfortable ( !!!@%&!) And I was up all last night with breathing / Airway difficulty . This is becoming more and more struggle ....

    It's very nice getting your messages, Mavish.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #36


  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #37

    Dearest Crystal just want to add my support and message to you here and there are many praying and hoping that the pathways you have to travel are made easy. You know I am concerned and praying and thinking of you every day. I am hoping you are having a better night than last night, much better in fact and I hope any bad nights are over. Our only wish is that we could do more but I know prayer is powerful and I have been certainly praying for you.

    Take Care-God Bless-Russ

  • Unknown
    Unknown
    #38
    This content has been removed.
  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #39

    Crystal,

    I know you're struggling, and I'm always happy to see the emails I get, despite your challenges.

    You always amaze me!

    I hope you get some respite, and enjoy some of today's beauty...

    Curt

  • Mavish
    Mavish Member Posts: 93 Member
    #40

    Hi Crystal,

    Just wanted to say hi. And let you know that I am thinking of you and praying for you

    Send you a big hug and lots of love.

    M

  • mel_
    mel_ Member Posts: 4 Member
    #41

    Also sending a hug to you from this corner of the world, Crystal. ML

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