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Time for hospice and Im really scared

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Capriness
Capriness Member Posts: 111

Yesterday my palliative onc told me he was going to recommend me for hospice as he believes I have less than 6 months left. My medical onc had told me the same thing last week so this was a second opinion. I told him I would get on the researching and find the one I wanted to be referred to.

Then  today I started getting all nervous.  For so many years my life has been doctor appointments and treatments and more appointments and scans, etc.  Now that phase is done. It's going to feel weird not going to doctor appointments.  And how do I keep up with that new drug getting approved that we all signed the petition for?

I think I'm going to still post and peruse both the Stage IV forum and the Hospice forum. I kind of feel stuck in between two universes.

Any words of wisdom or words of hope are welcome ladies.  I need all I can get. I feel so alone for some reason. Thanks...again.Cry

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Comments

  • kayrnic
    kayrnic Member Posts: 111
    edited August 2013
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    I can imagine you feel pretty alone. This has got to be the hardest point of this journey. I have no words of advice, other than to remember it is possible to come out of hospice. It doesn't always mean the end. I think the drug you are referring to is palbociclib. I haven't heard anything recently, but I am sure someone knows. I am going to the MBCN co fence in Houston next month and I will be sure to ask about it.



    Please stay with us and let us support you through this.



    ((((Hugs))))

  • Tina72
    Tina72 Member Posts: 32
    edited August 2013
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    I am not sure what to say, glad you posted. I can pm you my number if you want to talk, I don't want you to feel alone.

  • nancyh
    nancyh Member Posts: 185
    edited August 2013
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    Teri,

    Sending you lots of hugs and well wishes as you move into this new stage.  I don't have any wisdom to share, just want you to know I'm thinking of you.  Please continue to post here on the stage 4 board.

  • PinkShirtNow
    PinkShirtNow Member Posts: 11
    edited August 2013
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    I have no words of wisdom but I wanted to give you a gentle hug from one Oregon woman to another.  If I hear any good leads on hospice care, I will send them your way. 

    Linda

  • GrammyR
    GrammyR Member Posts: 297
    edited August 2013
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    Estacada please do not be scared so much. I promise you that Hospice care will not only comfort you physically but emotionally also. I am a older ( new Stage IV) and feel that my days are numbered also . I can assure you as a former RN and hospice nurse you will wish you had called them earlier. I have known end stage cancer patients last up to 1-2 years when they were signed off as ( 6 months) by their doctor. This is a general term as no doctor knows for sure how long we have. Its just no new treatment to offered. I developed so many friendships w/the staff and patients and learned to to deal w/the end of life. Not many are able to prepare ahead of time as far as putting your affairs in order, telling you loved ones just how you feel. Even write a jounal if you can for the next generation. ( On my to do list) No running back and forth to clinics and picking up Rx. It all will be brought to you. I will not hesitate to call them for myself as I know how well I will be taken care of. Hospice does not just " pull the plug" . They make sure you have as little pain as possible and help keep you comfortable as possble. Remember you,  no one, not even doctors can tell exactly how long you have. However living in denial can hurt the ones we leave behind as Hospice will counsel and your family to prepare them as much as possible.They will be there at your side every step of the way. Many hugs coming your way. PM me any time.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited August 2013
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    No words of wisdom. Just my positive thoughts. This is a difficult junction. I hope you find a place of peace.

    *susan*

    p.s. I don't think you should go anywhere. Your support is here in the Stage IV forum. Why should you move?

  • Mzmerz
    Mzmerz Member Posts: 80
    edited August 2013
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    I am so sorry.  No words of wisdom, just good wishes.

  • ibcmets
    ibcmets Member Posts: 312
    edited August 2013
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    Teri,

    I'm so very sorry to hear this news.   I agree with GrammyR's reply.  I do know of someone who was in hospice, who actually came off of hospice and went back to work---she's doing very well.  I certainly wish this for you.  Please continue to get any support you need here.  Saying prayers for you.

    Terri

  • chris1959
    chris1959 Member Posts: 60
    edited August 2013
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    capriness

      im so sorry .will keep you in my prayers and sending hugs your way

                                                                                                chris

  • lalenlou
    lalenlou Member Posts: 12
    edited August 2013
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    I can only imagine how scary this has to be for you.  None of us want to admit that we will all get to this point. I, too, have heard of so many good things being with hospice.  Please know you are in my thoughts and prayers.  It would help us all if you keep us informed of what they do for you.

  • iwillwinthisbattle
    iwillwinthisbattle Member Posts: 42
    edited August 2013
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    Here for you......

  • steelrose
    steelrose Member Posts: 318
    edited August 2013
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    Teri,

    Please know that I'm thinking of you, and that we'll all be here for you. I hope you'll stay and let us know how you're doing. I agree with those who have said that nobody knows our expiration date! I honestly can't believe anyone has the guts to state it with any certainty! Grrr... I'd keep a watch out for updates on that new drug too. As long as we're alive, there's hope.



    Sending love,



    Rose.



  • Rosevalley
    Rosevalley Member Posts: 1,664
    edited August 2013
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    All my experiences through family members is that hospice is great and everyone wished they had called/ signed up sooner. Still I feel the weirdness of actively pursuing treatment and then stopping; I know what you mean. For some of my relatives it was a great relief to get off the active treatment merry go round, peace and acceptance came with it. I hope you find that peace too. I hope you post here through your journey as we all learn from each other. We are all teachers on the path with wisdom to share.

    As everyone else has shared, there are many stories of folks who went well past their expirations dates and got kicked out of hospice. As time rolls on... new drugs come up and you can always try them. Prayers for you on this new path.

  • AmyQ
    AmyQ Member Posts: 821
    edited August 2013
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    Teri,

    Please know that you are not alone. We are here for you. Much love

    Amy

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited August 2013
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    Dear Teri, you're in my heart. We're all walking with you but don't speed up to much as my onco told me in January that my liver was a goner and do my papers. He even wrote my PC a letter that if my liver scan didn't show improvement in the March scan that it would be a couple of months for me. Well, it's August and I'm not dead yet! Do what you have to do to be comfortable and we'll be here for you the rest of the way!!



    My personal doctor cried and said getting hit by a bus would have been better, she meant quick.....I'm better with a long goodbye myself. I almost feel like I have a choice with this crappy diagnosis on "when" to end...like you're doing deciding on hospice care, it's another level of care and very personal. Till the end you are taking an active part in your care. That brings me some comfort when I think about my death. I'm counting on lots of drugs. I'm here, xoxoxox Jo

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
    edited August 2013
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    Thinking of you. Though you may feel lonliness, you are never alone.

    Caryn

  • Capriness
    Capriness Member Posts: 111
    edited August 2013
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    I was feeling strange that I couldn't cry about this but after reading all your responses, I'm crying my eyes out. Sometimes that's all it takes. You guys are all angels on earth. (Stay on earth for a while please!)

    It's almost 3 in the morning so I'd better try to sleep now. Maybe I'll feel better in the morning.

    Nitey-nite.

    Teri

  • bhd1
    bhd1 Member Posts: 173
    edited August 2013
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    Capriness I am sorry . In

    Hope you. Are feeling better today. This journey is so difficult. I think you you find a wonderful hospice and once you do things will change. I wish you luck Nd send love and support. Bsrb

  • dawny
    dawny Member Posts: 588
    edited August 2013
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    Teri, tell me to mind my own business if you like :) but is it possible for you to try another chemo? It seems you have done many hormonals and targeted therapies, but not something like Abraxane?

    Hugs to you, I hope you feel a little better after some rest

    Dawn

  • teacher911
    teacher911 Member Posts: 152
    edited August 2013
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    Teri,

    I hope you are feeling the love and support.  Please check in often, I will be thinking of you and sending loving thoughts your way.

    Michele

  • Anne45
    Anne45 Member Posts: 52
    edited August 2013
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    Sending you hugs and comfort.  Please post here as we all love you and want to support you.  Please don't feel alone.  Hugs to you Teri. 

  • ForestDweller
    ForestDweller Member Posts: 55
    edited August 2013
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    Capri....it is perfectly natural to fear change. One thing you don't need to change is your participation on this forum. Staying here and talking with your friends will be comforting. If you can tell us what your fears are there are probably many ladies who can help you through them.

  • cmhartley
    cmhartley Member Posts: 23
    edited August 2013
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    Capriness, so sorry you are having to go through this and feeling alone. Perhaps this sounds trite but we are all here for you, if not in body then in spirit. Please keep us posted as much as possible because we do care!



    Praying for peace and comfort on the rest of your journey. Gentle hugs to you,

    Katie

  • Capriness
    Capriness Member Posts: 111
    edited August 2013
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    Forest Dweller (and Dawny), my main fear is that I'm second guessing myself to quit chemo. I made that decision years ago, then a few months ago my onc put me on Afinitor and I had really bad mouth ulcers and other SEs so I stopped it and renewed my commitment of no more chemo. I've done chemo twice and I just can't do it again. Call me a wimp. :(  So now I have this internal fight going on whether I should just bite the bullet and do chemo again or not.

    Another fear I have is just the big change in my life from docs and tests and lots of stuff going on to almost nothing.

    Another fear is I live on my little farmlet and since I never had kids, my animals are my kids. For real. Emotionally anyway.  And this means it's time to get rid of them. This is the worst fear of all!  They won't understand why they can't be with mommy anymore and they'll be scared and confused and that just KILLS me! If I could do home hospice I could at least keep my golden retriever who is just a big heart with legs and fur. But I live alone so I don't think that will be an option.

    I'm sure there are more fears but those are what come to mind right now. Any advice on getting through them would be great.  THANKS!

    Teri

  • ForestDweller
    ForestDweller Member Posts: 55
    edited August 2013
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    Capri...the animals...oh goodness yes!! I totally get that. I got a little dog after my stage 4 diagnosis when I thought I would have a few years on hormonals. He is so attached to me. Turns out no hormonals ever worked and I'm on my second chemo already. Do you have anyone in your life at all that you're very close to that would be willing to take your dog? You could very slowly transition the dog into your friends life and later still have the dog visit you. My husband and I are in the process of getting my dog attached to him and getting him to be less dependent on me. It is not easy to be honest but it's working.

    As to your fear of chemo....I'm pleasantly surprised as to how well I still feel. I get chemo every week and only have two sluggish days.



    I'm not too well informed about hospice yet but my 92 year old friend has hospice at home for heart failure. He lives alone with his dog. Occasionally a grandson will drop by to see what he needs.

  • ForestDweller
    ForestDweller Member Posts: 55
    edited August 2013
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    Forgot one thing....we like to think of our animals only loving us. But they adjust when there's no choice. I got my dog from craigslist when he was six. He was transferred to me within minutes without adjustment. He only had one restless night where he paced my bedroom . The next morning he acted as if he had been with me always.

  • Padiddle
    Padiddle Member Posts: 139
    edited August 2013
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    Just wanted to send a gentle cyber hug.  I thought about what you wrote regarding no appointments.  That would be totally strange for me too.  I've been on chemo for 15 months now and I grow so tired of it.  That inner battle you mentioned about whether or not to try chemo again must be hard.  I just want to encourage you to do what you feels is best for you.  I hope the support and love I see in all these posts to you are helpful.  Thinking of you.  Jean

  • frankandfernsmom
    frankandfernsmom Member Posts: 4
    edited August 2013
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    Just here to offer support. I know how hard it all must be. Please check in often and let us know how you are doing. Sending a big hug your way.



    Linda

  • steelrose
    steelrose Member Posts: 318
    edited August 2013
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    Teri,

    Gosh no, don't get rid of your "kids!!!" They are a wonderful, calming influence on you I'm sure, and you should be with them. I don't know anything about at home hospice, but maybe there's a way???



    xo

    Rose.

  • Hortense
    Hortense Member Posts: 718
    edited August 2013
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    Capriness - I wish you peace as you move ahead and will be thinking of you. I hope you will be able to find places for your pets so that you will not worry about them. It is so sweet of you to be concerned about them. I agree with Forest Dweller that they do adjust. Please take comfort in that.

    GrammyR - what a beautifully written post. How extraordinarily kind of you.