Facing the Future

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  • Stormy1
    Stormy1 Member Posts: 436
    edited October 2009

    After

    six years of heavy tx I have with my pastors guidance, decided to postpone or stop tx as it is now

    The quality of life has become really poor, I want to remember how to live again.

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  • konakat
    konakat Member Posts: 6,085
    edited October 2009

    Hi Stormy -- six years is a long, hard time.  Sounds like it was a difficult decision but a good one -- to live life again.  To be free of the IVs, the tiredness, the whole rigamarole.  I hope you bounce back quickly and enjoy leading a "normal" life.  I too miss being "normal", doing and living like everyone else.  Have a wonderful day Stormy!

    Elizabeth

    xox

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

    hugs stormy----I just told my dh this am---I REALLY understand reaching the point where you say ENOUGH!  I have been at this for over 5 years-----the last few months QOL has been questionable at times------I will not do this indefinitely!!  Prayers for you to feel well & enjoy life SOON! 

    be well & stay strong 

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

    It takes courage to stop treatment, but often it brings peace.

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  • kbugmom
    kbugmom Member Posts: 15,189
    edited October 2009

    I will do treatment as log as I can. Today I wrote down my funeral wishes,. I plan on being around for alot longer. Ido not want my kids to wonder what I want. I will most likely start this trial I will talk to dr about tomorrow. I am a lil nervouse always am when doing new meds. God is able as Steph tells us. God bless all of you and your families.

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  • Amberzhubby
    Amberzhubby Member Posts: 7
    edited October 2009

    It is hard to decide to stop treatment.  Amber struggled with this decision for months.  First, coming to the conclusion that there may be a time when stopping treatment may be right even if there are still other options.  Second, getting to the point where you realize you have no quality of life and can no longer medically do anything but continue chemo because remission is not possible any more.  And finally through prayer and introspection facing your own mortality and quitting chemo.  In April, after some coaxing, Amber's doctor admitted that her cancer was growing agressively enough that even if she did all remaining possible treatment options he thought he could only keep her alive for 8-12 months.  This was quite a blow but it changed the way we looked at treatment.  She was only able to actualy feel well enough to feel like she was actually living maybe 4 days per month because of the chemo making her too sick.  She did a little math and found that if she could just not be sick from chemo and the cancer would cooperate she could do more living in a month or two that she could in 8 months on chemo.  But there was still that aweful feeling that you are "quitting" if you discontinue chemo before your body will not tolerate any more.  Amber struggled mightily with that but in the end she felt in her heart that stopping chemo and starting to live again was the right thing "for her".  We had so much fun as a family in May, June, July, and August that it ratified her decision.  I know she was glad she found the courage to take what was left of her life back and use it up on her own terms.  I think the key first is doing what is right for you at the time!  The second key is to stop seeing chemo as choosing to live and seeing stopping chemo as chosing to die.  You did not choose to have cancer, you did not choose to not be in remission, and therefore are not choosing to die.  It is the natural course of life and in life things just happen.  You all have known people on these boards who have done chemo to the bitter end and in many cases it is debatable whether the cancer killed them or the chemo did.  I am so happy about Amber's decision even though I miss her terribly.  She made her choice, lived and loved every day, and then returned to the God who gave her life in the first place.  Everyone needs to make their own decision about what is best but do it with all the information.  Don't just ask an oncologist their opinion either, ask a hospital or hospice social worker, or your family doctor, or whatever.  Oncologists, bless their hearts, are always going to want to treat your cancer to the bitter end.  Its what they do.  Get a well rounded opinion before making the right decision for you. 

    Up to the end, Amber never wanted to die and neither will you.  On Tuesday 10/6 when she woke up with the terrible headache and terrible nausea she told us right in the middle of her intense suffering, "I know what you are thinking but I am not ready to die".  I believe over the next couple of days heavenly hosts prepared her to be at peace with what was going to happen.  But on 10/6 she still wanted to live.  That is normal and natural to want to be here.  My God grant you all the wisdom, courage, and serenity to know when its time to fight and when its time to get ready to die.  May you each then, and now, find ways to live well and not just exist. 

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

    Thank you Amber's husband for posting this. It gives me great comfort to read these words.

    xo

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  • WingsofHope
    WingsofHope Member Posts: 497
    edited October 2009

    Yes, thank you for sharing with us, Amber's Hubby.

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited October 2009

    Amber's decision was a courageous one, and demonstrated how much she loved this life. Her choosing to live her remaining months with joy, instead of repeated poisonings, is an inspiration. Thank you, Amberzhubby, for helping us to understand the process that Amber considered in choosing her path.

    Lisa

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

    May I put in my two cents worth as a survivor of losing both parents?......Some things I wish my mom especially had done before she died was make a scrap book of all the things we had done together...I have maybe 4 pictures of my mom...I myself have tons of pictures I am putting into a scrapbook for my daughter......I barely remember my mother as she passed when I was 8...My dad is practically non existant in my mind as he passed when I ws 8 months old......If you want I will delete this, but I watched my mom pass from stage 4 bc and it wasn't scary to me.....To me it was beautiful because she passed with a sweet smile on her face no too long after telling all of how much she loved us......I also saw my sister die this past March.I was terribly upset to see that all her support had been taken away, (ie IV's and feeding tubes)....She was getting some moisture from moistened cotton swabs and that was all....She knew I was there and that was fine with me......She passed peacefully and I swear I saw the angels come and take her to Heaven.....I am not afraid to die.....I know...I am stage 1 and I should be thinking more of living than dying, and I try to, but given my family history and the fact that no woman on my mom's side lived past the age of 60 I can't help but think of it......I honestly don't know how it feels to be in your shoes, but I do know how it feels to be on the other side so to speak......I try every day to tell my family how much I love them just in case either I or one of them do not come home.......The only thing I am certain of in life is death and taxes and the good ole home mortgage being due.....Other than that I am clueless.........I have had to deal with so many deaths in my family that I could probably write a book on grieving but I wouldn't know where to start.....I wish you all peace and love no matter what you decide in your treatment plans......

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

    Thanx amberzhubby! I agree with others posting here-she was smart & courageous!! I think many of us start to understand the position she was in as we travel down this road..It seems to me that it is nature's way of preparing us for the descision......I have had a very hard month & in dealing with it I came to understand well what you say about stopping the poisoning is NOT giving up--------we are so blessed to have Amber's example. I pray your pain lessens with time & wonderful memories fill you with the joy she gave you all!

    Be well & stay strong 

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  • konakat
    konakat Member Posts: 6,085
    edited November 2009

    Amberzhubby -- thank-you.  Your wife's Confessions of a Hospice Patient and your post here have been two of the most meaningful posts I've read on palliative care.  They are uplifting, wise, courageous, and help me now and will help me a lot in the future.  They are posts I will save and read again and again.  Thank-you so much.  Hugs to you and your dear children.

    Elizabeth

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  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    Ladies, I am not stage iv!!!!

    I'm only posting here because I'm new to the board but moderate a stage iv forum on another  forum and basically do the research for the ladies who are too tierd or in tx and act as cheer leader:)

    I'm sorry to invade  upon your conversations but wanted to explain that many early stage people see themselves in time as stage iv. This is why they post here or pm you!

     I see your point and if I was stage iv I'd be annoyed at this too, but rather than post for selfish reasons I think many would like to support and cheer you on because they can picture how they would feel as stage iv which can happen to any of us at any moment.

    I had an aggressive cancer and this led me to being the only only person replying to frightened stage iv ladies on this other site. many  could'nt even go there and were scared to imagine it, but many other's felt genuine sympathy to offer support.

    When I do post to "my" stage iv ladies I try to be as tactful but hopeful or caring as possible depending on what they're going through.  I think you all may be missing out a little by not wanting or welcoming early stager's to offer support to you.

    BC brings us all together and we all share a bond, some of us have already recurred, other's may do so very soon or in years to come but either way I think we all dread and fear it but feel for those already there.

    I hope I haven't offended but really wanted to give another perspective to this discussion:)

    My very best wishes to you all:)

    Tricia xx

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  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited November 2009

    If you read what I said:

    This thread is not for everyone and you may not want to participate in the discussion.

    This is a place where you can allow yourself to face the future.  From the time that we learned that stage 4 was incurable; we have known that we will not survive this disease.  Whatever we want to say in here; stays in here.  It is your own personal chapel.

    It is the hope that when we want to have someone to recognize the plight that we are in, we will be able to comfort one another.

    Please bring your own tissues.

    At no point does it say you cannot participate if you are not stage 4.  However the subject is very personal and respect is necessary.  All we did was open a conversation on death.  We all will die some day but Stage 4s are in a special category. 

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  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    I'm sorry, I really did'nt wish to intrude upon you but only tried to give another perspective on answering your question as to why early stage survivor's post here.

    I have no issue with leaving this forum to only stage iv ladies and respect that fully.

    I'm sorry for any intrusion and wish you all peace of mind and body.

    My best wishes to you all ladies.

    Tricia xx

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  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited November 2009

    Geez that is the opposite reaction to what I was trying to say. 

    Any stage is welcome here if they are able to discuss death openly.

    No one is intruding here. 

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  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    Thanks Dreamwriter, sorry I missunderstood!!!

    Thanks for explaining more, I was just very concious of not intruding !

    Sadly I'm used to discussing death openly, both on the forum I moderate and even more sadly to friends I have lost and researched for. 

    Tricia x

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  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited November 2009

    Thank you for understanding.

    I think that this thread is still valuable to those that want to voice their fears, comfort each other or simply chat about that most unmentionable subject.

    We have lost so many friends and each stage 4 knows that one day it will be their turn.  Its a thought that scares us when friends get sick.  Your heart just stops thinking about it for some one close. 

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  • wallflower
    wallflower Member Posts: 36
    edited February 2010

    Sisters, This is the thread I've been looking for so long. No matter how good family/friends are no one understands like the sisters in the stage iv  club. It seems you have been reading my mind. Its six years for me since I started the  journey and three since mets began. I have learned so much along the way. Lately I have been very sick so had to talk to children and friends about the end which is approaching. Something strange has happened, for all those years I struggled to prepare my children to care for themslves alone, sorted out work, felt angry, sad and all those other emotions we experience. Since I have accepted that I did the best I could and cannot promise my loved ones a happy life with no pain I feel so peaceful and kind of ready. I feel so lucky to be surrounded by loving children and friends, I am trying to use my time to tell the people who matter tha I  Iove them and am so glad we met. For those who are not comfortble with my choice not to wear a wig, hide my closer death I say goodbye and wish them well but this is my life (so far). Take care of yourselves sisters and may we all be pain free and not alone when we go. I should admit that if I had read this post even a month ago I would have wondered what drugs the writer was taking Smile, maybe all this serenity is the result of brain mets but even if it is I wish it for all the sisters.

    Thanks again for starting this wonderful space.

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  • pee
    pee Member Posts: 456
    edited March 2010

    I just wrote a looong post and lost it.  Damn.  I cannot rewrite it again now.  It was too much to write and then rewrite emotionally.  I will redo it when I can handle it and my thoughts again.  I just want to say that this is a necessary board (Thanks Dreamwriter for starting this board) and while it can lay open some pretty sore wounds it is also very cathargic (spelling...sorry).  

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