I am also now officially "Palliative"

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joanne1428
joanne1428 Member Posts: 388
edited June 2014 in Palliative Therapy/Hospice Care
I am also now officially "Palliative"
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  • joanne1428
    joanne1428 Member Posts: 388
    edited February 2008

    A new stage in the journey, that is for sure.  I'm posting because I'm willing to share and talk about it, if anyone out there wants that too. 

    This part seems so private... but I've always been one to talk about anything, so just wanted to put that out there.

    I was very sick and weak and not breathing well, and new brain mets added to the mix when the palliative label was brought out, with "days to weeks" the time (only when I pushed the oncs right up to the wall, they don't want to give a time, which I understand).   However, I've dodged the bullet for the moment.... had some pallliative radiation which I made it through and am recovering..... now I think he's talking weeks to maybe 2-3 months, and maybe more chemo if I chose, amazingly I seem to be up to it physically.

    Love to all... Joanne

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited February 2008

    Hi Joanne,

    I'm glad you sound in such good spirits, and that the radiation has made you feel so much better, and even to have brightened your docs' outlook.

    Sending you all my best wishes,

    Ann

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    I am sorry Joanne.  I don't understand your ability to face this as I would find it hard to know I only have weeks or days or months. I know we all have an expiration date, it just seems so unfair for you. You are such a positive person and here you are still willing to help others who need to talk ....  Best wishes!

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  • QueenSansaStark
    QueenSansaStark Member Posts: 207
    edited February 2008

    Joanne, I want to take the time to tell you - you are one amazing, courageous, and inspiring woman. I read your posts, and admire you muchly.

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  • LoriFL
    LoriFL Member Posts: 1,557
    edited February 2008

    Joanne- Thank you for all the support and encouragement you have given me lately. I truly appreciate it! I love hearing that weeks are turning into months. Next, months will turn into years!!!!

    thinking of you! Lori

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2008

    I know you've had it rough, Joanne, and you commented when I posted about my friend's new brain mets diagnosis. I am a non-believer when it comes to a doc giving a time expectancy. Just live the time you are given, whatever that is. Nobody really knows. You are an inspiration here on the boards with your perspective on getting through all the treatments.

    I wish only good things for you...

    Thanks for sharing all that you've shared with us!!!

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  • Naomi12475
    Naomi12475 Member Posts: 253
    edited February 2008

    Joanne, thanks for sharing your thoughts.... I hate this damb disease...have you stayed with the same docs? Could you try a new treatment center? Maybe something that is more holistic? Sorry if my questions are dumb....I just hate this sooo bad...I am praying for a continued response to your tx.

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  • wendyk13
    wendyk13 Member Posts: 1,600
    edited February 2008

    Joanne...thanks for sharing with us.  I just happened to see your post as I scrolled down too far and wanted to read it.  As I did remember seeing your pretty face before, I went back and read a lot of your posts.

    You are an amazing woman, like the others have said.  I would like to add my hopes and prayers for a continued response to any and all treatments that you try.  I wish you peace and joy.

    A big hug from Illinois is coming your way.....HUG!!!!

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited February 2008

    Joanne, sounds like you are of sound mind. Only you know your next step. But...if your body is up to it, maybe more chemo would buy some more quality time?

    It is nice to read your thoughtful posts, it gives me courage to face whatever lies ahead.

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  • candie1971
    candie1971 Member Posts: 4,820
    edited February 2008

    Joanne, you are truly an inspiration. You are in my prayers. Your positive outlook and willingness to share your journey will help you and so many others. With all the prayers here for you....may you continue on this journey in peace and pain free. We are all holding your hand!!!

    Hugs and prayers,

    Candie

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  • JoyRebecca
    JoyRebecca Member Posts: 787
    edited February 2008

    Joanne,

    If you feel up to chemo, why not go for it? You've had a rough journey and through it all, you've remained positive,inspirational, and supportive, and you've done it all with grace. I look forward to your words as you're my role model. Do what feels right and peaceful for you.

    You're in my thoughts daily.

    XX

    Joy

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  • chemo072
    chemo072 Member Posts: 682
    edited February 2008

    Peace be with you, and I hope that this time goes as well as it can for you!

    Wishing you love, laughter, pain-relief and a gentle spring (here in Oregon the crocus are blooming, spring is on its way),

    The biggest hugs,  

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  • zap
    zap Member Posts: 2,017
    edited February 2008



    Dear Joanne,



    You touched me around New Years with your post on goals, children, life lessons, and the final leg of the journey we will be on. I was so touched I placed that post in my journal and pm'ed you a thank you. I too wish you well. This part of the journey is private for you and your family, yet you are on that part of the raod we will all travel sooner or later. Thank you for including us and allowing us to travel with you. Tell us what we can do for you. Can I do anything for you and your family. I would like to give to you.



    Susan

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  • VickiTN
    VickiTN Member Posts: 361
    edited February 2008

    Joanne,

    I haven't been to the Boards in a while, and I'm saddened to learn of where you are on this journey. 

    You truly are an inspiration...always so giving of yourself and offering compassion and support to others. You are someone that I greatly admire on this Board.

    I will keep you in my prayers and pray that your days are pain-free and filled with peace and love.

    love and hugs,

    vicki

    Sorry - I don't know why, but, my message posted three times....so, I've deleted the other two below.

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  • VickiTN
    VickiTN Member Posts: 361
    edited February 2008

    Joanne,

    I haven't been to the Boards in a while, and I'm saddened to learn of where you are on this journey. 

    You truly are an inspiration...always so giving of yourself and offering compassion and support to others. You are someone that I greatly admire on this Board.

    I will keep you in my prayers and pray that your days are pain-free and filled with peace and love.

    love and hugs,

    vicki

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  • VickiTN
    VickiTN Member Posts: 361
    edited February 2008

    Joanne,

    I haven't been to the Boards in a while, and I'm saddened to learn of where you are on this journey. 

    You truly are an inspiration...always so giving of yourself and offering compassion and support to others. You are someone that I greatly admire on this Board.

    I will keep you in my prayers and pray that your days are pain-free and filled with peace and love.

    love and hugs,

    vicki

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  • Ivylane
    Ivylane Member Posts: 544
    edited February 2008

    Joanne.... I have been reading your posts from time to time and have never responded.  I just want to say that you have a wonderful way with words and your heartfelt hope and compassion for all of us in the BC journey is so apparent.  I am so sorry to hear of this recent news and will keep you in my prayers.  Please post when you can and let us know how you are doing.  Personally, I don't really buy in to the days or weeks thing...I have known too many women who have proven this is not so.... I hope you are one of them...

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  • Ivylane
    Ivylane Member Posts: 544
    edited February 2008

    Joanne.... I have been reading your posts from time to time and have never responded.  I just want to say that you have a wonderful way with words and your heartfelt hope and compassion for all of us in the BC journey is so apparent.  I am so sorry to hear of this recent news and will keep you in my prayers.  Please post when you can and let us know how you are doing.  Personally, I don't really buy in to the days or weeks thing...I have known too many women who have proven this is not so.... I hope you are one of them...

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited February 2008

    Joanne-

    Thank you for your generosity in sharing about this new phase of your journey with your fellow travellers in Cancerland. There's such a fear of the unknown in all of this, as we are all too painfully aware. I don't know what the future holds for me but your post gives me hope and takes some of that lurking fear away. Wishing you all good things- time with people you love, comfort, and maximum well-being at the top of the list. Allyson

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  • 2timer
    2timer Member Posts: 590
    edited February 2008

    Wow how generous of you to share this part of your journey with us.  You are truly a remarkable woman and I pray that you will continue to get stronger.  Things were looking very grim for a bit and I am so glad to see you back posting.  I'm really quite impressed with how you're handling your prognosis.  Share whatever you feel comfortable with sharing.

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  • lastminuteD
    lastminuteD Member Posts: 333
    edited February 2008

    Joanne - my thoughts and prayers are with you and your family.  Feel well and enjoy each day.  The words "one day at a time" really take on a different meaning with this disease.  Know that there are many here that are thinking about you and hugging you gently.

    Dawn

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  • faeriesong
    faeriesong Member Posts: 198
    edited February 2008

    Joanne,

    You are always here for everyone - however 'big' or 'small' their worries.

    I hope you know that we are all here for you and I hope you can feel the warm hugs coming atcha from all over the world.  Can't be many women who get a great big 'ol worldwide hug...

    This disease is indescribable but you handle it with grace and dignity.  You amaze me and inspire me.  Take good care and know that we are all holding your hand and thinking about you more than you will ever realise.

    love and prayers heading your way

    a great big, long, god-I-hate-this-disease-but-you're-a-great-women hug for you,

    Mary xxxxxx

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  • waterlily
    waterlily Member Posts: 547
    edited February 2008

    Joanne-

    My warmest thoughts and prayers are with you. Your beautiful spirit keeps shining through all of the struggles.  Thanks for sharing with us. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    joanne, happy to read your pallative rads were bearable and whatevery you are officially or unofficially, we are all right there holding you up in good thoughts and prayers every day!

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  • sueps
    sueps Member Posts: 2,266
    edited February 2008

    Joanne xxx

    I pray for you every day and hold you close in my heart.

    You are the inspiration in my life .... with your love and strength and courage ..and for that I will be eternally grateful.

    Always know that you are loved my many xxx

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  • maddie103
    maddie103 Member Posts: 24
    edited February 2008

    Joanne,

    Thank you for sharing about something so personal and difficult to go through.  I hardly ever post but my MIL is nearing the end of her journey with bc mets. Has mets in her liver and just recently they discovered a 2 cm tumor in her brain with lots of swelling. She had a consult with a radiation oncologist who recommended WBR.  When my MIL's daughter asked the oncologist how much time she thought her mother had, the radiation oncologist was very frank with her (with the WBR 6-12 months), no treatment 3-6 months. The dr. did go on to say that no one can know for sure but based on her experience with people in a similar situation. My MIL is now deciding whether or not to bother putting her body through the WBR and is leaning towards not doing it.  She is 69 years old and pretty frail (77 pounds, since having bc mets, she was at a dangerously low 63 pounds and a high of 85).  Chemo last year almost killed her and then she stopped that and went on to Herceptin which were helping keeping the liver mets in check but the brain tumor threw us all for a loop.  She's tired of going through all these treatments as they are definitely chipping away at her quality of life.  I think she is almost to the point where she is willing to accept hospice as her next step.  She told us she would like a week to think about this and decide what she wants to do.

    I hope the end of your journey is pain-free and you do not linger/suffer needlessly. I consider myself a person who has faith, but often find myself questioning why God would put people through something this awful.

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  • Naniam
    Naniam Member Posts: 1,766
    edited February 2008

    Joanne,  never posted in response to your post before but wanted you to know that you are an inspiration.  Grace and dignity in the face of less than hopeful news is what you have shown.

    Maddie, some difficult days ahead for your family as well.  I pray that all of you can focus on the reward beyond this life for believers.  

    Blessings, Brenda 

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited February 2008

    Dear Joanne,

    Through great big giant tears, you amaze me. I agree with Joy, you are my new role model.

    I cry myself to sleep some nights just wondering....if...when....

    I just can't believe your ....... I wish I really knew you. I wish I was sitting by your side right now sponging up some of whatever that is you have inside you that makes you be able to think the way you do.

    Thank you for sharing your love with us. Thank you for helping me be the kind of person I want to be. You really have influenced me by your posts on this site. 

    I love you girl.

    Traci

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  • joanne1428
    joanne1428 Member Posts: 388
    edited February 2008

    To Maddie

    Gee, it must be so tough for your MIL to decide.  In my case it was "days" to "weeks" and WBR was sort of presented as the only option that I had at the moment.   I am 46, my children are still 16-19-21....  I will still do almost anything! 

      

    I was so terrified of WBR, and the side effects.   Turns out, it wasn't that bad, but I did have a palliative dose, it was brief (5 treatments) and a lower dose, so far fatigue is the only bad side effect.   I wonder if that would be an option for your MIL..... 

    MOSTLY, I guess at this stage it is about honoring whatever her wishes turn out to be.   

    It is indeed a mysterious journey and I have given up trying to come up with a "why" for this one.....   I'm afraid I will  never figure that out, nor will I figure out how to leave my children with any kind of peace in my heart.    However, I do know that I have to, and so I will, and it will just be one day at a time for me, just like everyone else.  

    They promise me no pain and that I will not suffocate.  I place my trust in that, and I actually do have a doctor assigned now just for palliation of symptoms, and she really is doing a great job.   I hope that your MIL has similarly good palliative care.  My team looks out for me and my whole family and will be there for bereavement support as well.   It is all a comfort.

    I'm sorry you are facing this.....  No one should, you are quite right about that !!!!     Joanne S

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited February 2008

    {{{{Joanne}}}}  You are truly an inspiration.  I know many of us think about how we would handle this situation you are in and I honestly find some comfort learning through your experience.  On the other hand, I HATE that you have to be there, so far away, to teach it.  You should be able to have us there, helping you through it, if only for a gentle hug or hand holding session.

    Please know you and your family and care providers are all in our prayers and thoughts, each night.  Bless you for sharing this most important part of your life.

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