Confessions of a hospice patient

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  • marejo
    marejo Member Posts: 1,356
    edited August 2009

    Dear Amber,

    What a beautiful post.  Honest and full of dignity/  Your strong faith is an inspiration to us who also believe and know God has a place for us in His Eternal Home.

    God Bless you sweet lady.  May God's Peace continue to hold you close and may your journey continue to be full of love and peace.

     Mary Jo 

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  • KLynn
    KLynn Member Posts: 1,407
    edited August 2009

    Hey Amber....

    I just came back after being away for a week or so and saw your post.....

    I haven't been on much lately , having surgery and recovering...

    I would like to have wished and prayed for peace for you but  you seemed to already have found it..

    Peace and peaceful  is a beautiful place to be...be happy sweet sister....I'm sure God has a very special place for you...

    Hugs KLynn.

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  • PattyP
    PattyP Member Posts: 54
    edited August 2009

    Thank God for your honesty.  I too and making the move to hospice and I have a sense of peace that I haven't had in years.  I feel better already knowing the assaults are going to end.  My 4 children will have me from above and so will my love of a husband.  I was out of bed today more than I have been in 6 weeks.  I just want to live what is left, enjoy my food, love my kids, bake some bread, fill out school forms,just live my life.   This fight, fight, fight mentality is not for me.  Other than the pain, I am not afraid to die.  Thanks for opening the closed door of acceptance.  It is not a sin to refuse treatment that will only make me sick and offer no guarantee of anything!  It's almost crazy to think how we've been programed to grasp for life no matter how sub standard it is...but if we a breathing, we must be survivors  Thanks for your words,

    PattyP 

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2009

    Thank you all of my dear friends and sisters.  I appreciate so much your words of love, acceptance, and support.  I tread this road so much easier now that I know that you all are by my side, supporting me, praying for me, and keeping me company.  

    We all are dying from the day we were born, some of us will just reach that destination sooner.  Those of us who go sooner just get to spend longer in heaven.  Is that such a bad thing??

    Thank you again for all of your kind words.  I feel your love, well wishes, and prayers helping me and strengthening me. 

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  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    Amber,

    I read your original post days ago, but wasn't sure if I should post or not. I have visited your blog numerous times looking for updates. I enjoyed seeing your photos of your family together and happy...so much love in your family.

    I was never one with words, and most of these ladies have posted so eloqetly(sp). I support you decission and I think of you daily. I'm glad you are at peace with your decision and I'm sure god has a special place for you to watch over your children when the time comes.

    I hope that your time remaining is painless,peaceful and filled with joyous moments. LIVE your life.((()))

    Sam

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  • chola2009
    chola2009 Member Posts: 4
    edited August 2009
    Hi Amber, your story is truly touching and I am very glad to learn that you are a woman of faith. From reading your post I it seems like your mind may have given up but not your spirit. I know it's hard but don't give up on believing. Visit our site when you get a chance at www.awonderfultree.net and God bless you.
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  • Hopeful-1
    Hopeful-1 Member Posts: 72
    edited August 2009

    Amber,

    I read your posts and I'm in awe of your courage, strength and honesty. You and your family will be in my thoughts and prayers.

    I was diagnosed in May 2009 and it hit me like a truck. 

    When I was 25 I lost my sister to non-hodgins lymphoma and she was 29.  This was 20 years ago.  She used to listen to a song when she was sick and I recently found it.  Although it makes me cry, it is a very beautiful song that my sister loved. The song called "Lord is it Mine" is on youtube if you want to listen to it:

    http://www.youtube.com/watch?v=gos1ove7bXY

    You are incredible and I will pray for you.

    Connie

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  • Estepp
    Estepp Member Posts: 6,416
    edited August 2009

    Amber, you inspire..........and I love you.

    I will continue with your blog. The Lord will bless your family... He already has.

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  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited August 2009

    Amber, I wish you peace and comfort, May God be with you until he is ready

    to take you to heaven, Where we all will be cancer free! God bless you

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  • mmdj43
    mmdj43 Member Posts: 45
    edited August 2009

    Amber,

    I actually stumbled upon this thread and unfortunately never got the opportunity in the past to get to know you.  I too was diagnosed with IBC, although my original dx was Stage IV IDC.  It scares me to think of what the future will hold for me but I can't wollow in pity wondering about it.  So i'm going thru the motions and getting my maintenance treatment.  I was on 6 tx of TCH from the beginning of March and completed it in June.  My body handled it extremely well and I only pray to God that if and when I have to go thru it again that my body will handle it just the same.  

    I'm disappointed to hear that you have made the decision to switch to hospice care, but I also know that you, just like many, made the decision you felt was best for you.  I applaud you for the courage you have.  I wish you all the best as you take your walk down this path.   God has a plan for you.  You are truly an angel.  

    Much blessings!

    Mary

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  • joaniji
    joaniji Member Posts: 733
    edited August 2009

    Dear Amber,

    I have read your posts and even visited your website. I had the need to see a picture of you - a woman whose courageous, peacefulness, fortitude and compassion are an inspiration. Although I am brought to tears by your situation, I am truly inspired by the dignity and resolve that emanates through your postings. Please do not feel as though you are any less "strong" or a disappointment to others because you have made the decision you have made. Terms like strong and disappointment are irrelevant now. You have demonstrated incredible strength as you have faced your cancer head on and now have made a poignant decision to embrace your life as it is and to accept what is likely coming. I wish for you all the comfort as you continue your journey. May you enjoy your loved ones for as long as you are able and when no longer able, may you travel peacefully to the heaven you iimagine. Warmest wishes,Joani

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  • coonie
    coonie Member Posts: 7,618
    edited August 2009

    Just thinking of you today Amber and sending gentle hugs and lots of prayers. I pray you have a peaceful and painfree day making precious memories with your family.

    DontWorryAboutTomorrow.jpg Encouragement image by lilykinsss

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2009

    Amber,

    I always thought that it takes more courage to go off treatment then to stay on it. I am with you in your choice.  Too many people call hospice too late. We have so little control with this blasted disease. You have control over  this.

    We all are terminal. We have the gift/curse to know approximately when our time will come. It is scary.  It is not fair. It is sad. 

    I read your blog/web page. I felt your pain, because I know I will be there some day. It is not so much for myself that I mourn but for my children.  I do know in my heart that they will be okay and that I will be able to still watch them grow and thrive from heaven.

    You just keep living. That is all that anyone of can really do.

    Janis

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited August 2009

    There's nothing I can say that everyone else hasn't, and probably better then I could.  I, too, was wondering how you were doing.  We were both diagnosed around the same time, and I do remember how much difficulty you were having with the chemo.  I'm so glad to hear that you are finally enjoying your time with your husband and children, and not constantly sick from treatment.  When you're constantly feeling lousy, you can't be there for your family like you want to be.  I hope that you have many more good days ahead with them before God calls you to him. 

    Hugs and peace for you and your family.

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  • coonie
    coonie Member Posts: 7,618
    edited August 2009

    Good morning Amber

    Thinking of you again today. Maybe today will bring a peaceful walk, or some quiet time with your kids or DH, or some quiet time with just YOURSELF. :)  Please know that I lift you up in my prayers every day!

    thspring.jpg walk through the trees image by scbeachdreamer

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  • hollyann
    hollyann Member Posts: 2,992
    edited August 2009

    Good morning, Amber.......Thinking of you today and always......My prayer for you today is that all your needs are met and that you find some peaceful time with your family and friends.......Your courage and grace continue to amaze me......When my time comes hopefully many years from now (as we are not promised tomorrow) I hope I remember the lessons you and all the stage 4 sisters here have taught me about courage, love, grace and dignity.......I feel you are a true sister and I love you as such......My only regret is that we never met face to face but I know we will meet in Heaven......God be with you today and always.......

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  • getwell
    getwell Member Posts: 535
    edited August 2009

    Peace and love to you....

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  • Makratz
    Makratz Member Posts: 12,678
    edited August 2009

    Amber, I hope you are feeling well and enjoying every  minute of every day.  You have made the tough decisions that needed to be made for you.  I wish you much peace, health and happiness.  I will keep you in my prayers.

    XOXO

    Linda

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  • deborye
    deborye Member Posts: 7,002
    edited August 2009

     Hugs And Kisses  to you, Amber

    luv

    debbie 





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  • saint
    saint Member Posts: 1,877
    edited August 2009

    Hugs Amber,

    You continue to inspire & teach with your amazing faith. God is using you to show us an ACCEPTABLE choice that will allow you to continue to enlighten others & praise His glory. More people need to learn from you how faith in God gives us the courage to face anything.

    I do NOT see you as "giving up," but as accepting a difficult reality & using your beliefs & strength to live within that reality. I still maintain that we need to eliminate the phrase we see so often in obituaries, "after loosing a courageous battle with cancer." I will never accept that cancer "wins" cuz when we go we're taking the beast out with us!!!!!!!!

    May He bless you with pain free time to touch more lives with your message & to enjoy making lots of memories with your loved ones.

    HUGS-be well & stay strong 

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  • coonie
    coonie Member Posts: 7,618
    edited August 2009

    Sending hugs and prayers to you today Amber. Just thinking about ya!

    ncgy6g.gif Hug image by KimCandy2

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  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited August 2009

    Amber, I agree with Saint about the use of the phrase "giving up." It takes more courage and strength than many know in order to reach the place of peace or acceptance that you describe. So many of the people I have known in hospice care have made a commitment to respect their rights to dignity, personal choice, comfort, and quality of life to the extent possible. This warrior mentality that we often have or hear about in coping with cancer has many feeling like failures if they choose to "stop the fight." I choose not to use that language (or try not to, but sometimes it seeps in since our culture is so saturated with it) and try to focus on what gives my life meaning and hope. I think sometimes when people use the term "giving up" they presume the person has given up all hope, but I believe that hope involves many things, not just a "cure" or an "extended future." Hope involves finding meaning from day to day, feeling spiritually attuned to what gives life meaning, being with nature, loving and being loved, and many other aspects of what we mean when we say "living" (taking into consideration that it means different things to different people). You sound as if you have chosen to live fully in the ways that mean the most to you until you are no longer present with us on this earth. I hope for you ongoing peace and comfort.

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited August 2009

    Amber,

    Thinking of you and your family and sending more hugs and love your way.

    Jackie

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2009

    How about 'has chosen not to endure anymore unsatisfactory treatments'.?

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2009

    Wow, that's all I can say.  I am amazed at the insight, and support that you all have shown to me.  I wish I could thank you all individually, but I am so slow at typing now.  Saint, I love the thought that I don't loose my battle with cancer, because the beast goes with me. When I die, so does the cancer!  There will be victory afterall !!!!!!

    I don't understand why I am still here.  I was given 3 months to live, and that was almost 4 months ago.  I don't have any symptoms except extreme tiredness (which more than likely is brought on by all of the painkillers I am on) and pain.  My pain is managed really well.  I did have a couple of weeks where the meds weren't working and I had a bunch of new nerve pain. Shooting pain down my back into my leg and foot.  So not fun.  My hospice team adjusted my dosages of different meds, and now I am feeling tons better.  I was even able to go to the swimming pool with my kids and family last Wednesday.  It was so much fun.  I love floating because it gives me a sense of weightlessness.  Very effective pain relief.  I wish I had my own pool to float in.  I have had offers from friends who have pools to come over anytime.  I may have to start taking them up on that.

     So that is what is happening with me.  I know that each day I am here is a miracle.Life is a git.  Every day is precious.  Don't take anything for granted!!!

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  • heatherpalmerton
    heatherpalmerton Member Posts: 2,247
    edited August 2009

    Amber, you truly are a inspiration. Heather

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  • hollyann
    hollyann Member Posts: 2,992
    edited August 2009

    Amber, I for one am glad you are still here and still able to enjoy life as much as possible......God is able as Stephanie says and He has surely not decided your time is up yet......I admire your courage to forego anymore chemo and your decision to have a better QOL.....My prayer for you is that you have many many more quality days with your family and friends......Only God knows our expiration dates and doctors can only guesstimate......I hope as the winter sets in in a couple of months that you are able to find a nice indoor heated pool to float in and that you have many many days pain free.....You are certainly a hero to me and I am glad I met you here on these boards........

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited August 2009

    Amber,

    What can I say?  You continue to inspire me and give me strength with your warmth and peacefulness that I can sense in your words.  Everyday is a miracle and so are you.

    Hugs and hugs and hugs, Jackie

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2009

    Thinking of you today and every day, Amber, and just wanted to let you know that you are in my prayers ~   Deanna

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  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited August 2009

    Amber, I'm glad we heard from you. I imagine that feeling of weightlessness and relief was awesome. I hope you will accept your friends' offers of pooltime. When I meditate or do breathwork, I often feel weightless, as if I am floating, and it is amazing how much this contributes to my peace of mind, even when I begin as very anxious.I also have a visualization I do where I imagine myself floating down a river, feeling the various changes in current, feeling supported by the water and nature, hearing the birds sing, etc. Sometimes I allow myself to feel swept out to sea (my desire to let go of that impulse to over-control my life); other times I just hang out in the bends of the river and don't pressure myself to move toward any particular outcome, or just float and float and float until I feel refreshed and rested. I hope you will continue to find ways of bringing comfort to your body, mind and spirit.

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