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    What would YOU do?

    I now have have a choice - I can be poked, prodded, have ? how many procedures Horrendous - NO Cure) and have 2 Maybe three years. OR I can choose palliative care (No Treatment) and have 6Mo . to a year ( Who Knows) I already have too many aches and pains, i have a strong faith in the lord, and am praying and meditating on this. Treatment means I have to STOP everything I enjoy - What would you DO?
    Blessing
    Alex44

    #2
    I don't know what I would do in your shoes but I do know one thing: Doctors know a lot and have access to statistics about survival rates, etc., but they don't know how to predict what the future will bring. They can be so very wrong in their prognoses, as this passage from a recent post from Rose in your recent thread shows:

    One of the questions we often asked Jim's physicians about any treatment was "How much time will this buy me?" They are reluctant to answer, but they know the odds from their experience with thousands of patients. Jim's first oncologist gave him "3 to 6 months" in January 2017. His second oncologist put Jim back on immunotherapy, and he surpassed that initial prognosis by 3 1/2 years.

    Of course, all of those 3 1/2 years were filled with appointments, tests, infusions, radiation treatments, hospitalizations, and anxiety. He endured all of that, because he didn't want to leave Jon and me.
    I've known of quite a few other cases where someone was given only a short time to live but lived much longer than the estimate. So don't believe these estimates.

    Or you can half-believe them but tell yourself you are going to be the exception, the person who beats the odds. Some people do beat the odds.

    You might find it easier to decide whether you want palliative care or more treatment.

    I hope you'll have many happy days ahead of you yet.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

    Comment


      #3
      ((((((Alex)))))) ~

      My dear friend, only you can decide for you.

      Jim made the decision to go through the tests, procedures, infusions, radiation out of his profound love for Jonathan and me. He didn't want to leave us. He was worried about leaving me to care for Jonathan on my own. Jonathan passed a year before Jim, so Jim was here with me to grieve and comfort me. That was the other part for him ~ taking care of me in whatever way he could.

      I repeatedly assured Jim that if he was done, I would understand and accept his choice.

      I won't sugar coat it for you, Alex. The cancer journey is rigorous and relentless. You always have the option to stop treatment at any time, if you decide to do so.

      You have to do what feels right for you. Think about what you want, how you want to spend your time. Think about how much you will be able to tolerate with or without treatment.

      If you choose palliative care, you will receive loving care and attention through Hospice. This can be provided at your home. You should be able to have home health care nursing and aides, who will care for you and tend to your medical needs, ensuring your comfort as their number one priority.

      Even if you choose treatment, you should be eligible for Hospice in home care. Or home health care at least. Jim had a nurse, who visited every week to draw blood, do vitals, and advise us on the best care for Jim. This nurse also cared for Jonathan for 10 years.

      These are the things you need to consider now as you determine your path.

      Perhaps you would be helped speaking to a counselor, who specializes in care for cancer patients. We were offered that counseling, although we never took advantage of it. Please ask your attending physician to provide you with resources for counseling. Speaking with a professional, who understands the cancer journey, might help you to explore your feelings and help you in your decision-making.

      You need all of the support available right now and for the rest of your life. I'm here for you, as are your other BT friends. But we can't be THERE for you, where these people can.

      I am reaching out through the computer screen now, hugging you, and praying for you. I love you. God loves you.

      Keep praying, Alex. Ask for Divine Guidance. Angels are watching over you. You are not alone.

      Love & Light,



      Rose

      *Virtual Hugs Are Germ-Free!


      THANKS!


      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        Rose - it takes a LOT to make me cry, I am now. I am a a crossroads, and my doctors have learned NOT to sugarcoat things for me. I will ask for a counselor that specializes in cancer, There is no cure for me, My precious Cynthia left in 2017, after nearly 30 years together. I know she is with me, as is the lord, and Life is a very precious gift t0 let go. I have no Family, No Real friends, So I believe you know the decision I have made - It may change, but I doubt it. I thank you You have endured the unspeakable, May the Lord be with you always. God be with you
        Blessings
        Alex44

        Comment


          #5
          As A Post Script, IF Cynthia were here ( My Beautiful wife, I would fight like all get-out, However she passed ( I will NOT start a rant, she was taken too young , to soon ) I have a whole bunch of other chronic conditions, diabetes being one of them.. which is problematic in itself.. I have a strong faith, I plan to get counseling, if's just a lot right now, I am very grateful for everyone here, God Bless everyone here.
          God Bless Ya'll
          Alex44

          Comment


            #6
            ((((((Alex)))))) ~

            Cynthia is watching over you, and she is very near you now in your times of struggle, as you were for her. Meditate and visualize Cynthia at your side, and talk with her out loud and tell her how much you love and need her presence. Invite her to visit you in your dreams. Keep an eye out for signs that she is near ~ a butterfly, a breeze on your cheek, when there is no wind, a bird soaring close to you.

            It is so overwhelming, Alex, I know. This is why I want you to receive counseling to help you put it all out there to someone, who knows and understands the cancer journey. I pray for the perfect person to counsel and guide you.

            You are in my prayers, and I ask that God grants you strength and holds you in the palms of His Hands.

            The Light of God surrounds you

            The Love of God enfolds you

            The Power of God protects you

            The Presence of God watches over you

            Wherever you are, God Is!

            Love & Light,



            Rose

            *Virtual Hugs Are Germ-Free!


            THANKS!


            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              #7
              Rose - Thank You
              Blessings
              Alex44

              Comment


                #8
                Alex, I can't say it any better than Rose. All the advice here is good. I hope you make the right decision for you. We love you. God loves you. Prayers and hugs for you.

                Comment


                  #9
                  ((((((Alex)))))) ~

                  You are in my thoughts, and I am praying for you continuously. I hope that you will check in soon with an update. I worry about you.

                  Please know that you are loved, and you are not alone. We are here for you. Lean on us. Let us carry some of the weight. We're up to doing that, and we can do that.

                  This Unity Affirmation has seen me through many crises and difficult times. Read it out loud, and repeat it many times a day, Alex.

                  The Light of God surrounds you

                  The Love of God enfolds you

                  The Power of God protects you

                  The Presence of God watches over you

                  Wherever you are, God Is!


                  This is today's Daily Word from Unity 4/13/21:

                  Healing
                  THE HEALING ENERGY OF GOD RENEWS ME.

                  Wholeness is my true nature as a child of God. Each time I connect consciously to Spirit within, I discover this Truth and am renewed with an influx of divine healing energy.

                  When I still my body and mind and bring my attention to my divinity, I become more receptive to the presence of God within me. Like flipping a light switch to let the electricity flow, my peaceful mind invites the light of God to rush into me and fill my entire being.

                  I imagine this healing light flooding every cell in my body and every corner of my mind. In this state of oneness, I open myself to the healing energy of God.

                  I am grateful for this healing, a blessing and a return to wholeness.

                  Then your light shall break forth like the dawn, and your healing shall spring up quickly.—Isaiah 58:8
                  You can access the Daily Word every day at:

                  Only registered and activated users can see links., Click Here To Register...

                  I love you, Alex, and I send healing, positive energy and many prayers for strength to you~

                  Love & Light,



                  Rose

                  *Virtual Hugs Are Germ-Free!


                  THANKS!
                  Last edited by Earth Mother 2 Angels; 04-13-2021, 04:14 PM.
                  Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                  Comment


                    #10
                    Thank All of You - I have a choice to make - I hope that I will make the right one. My Physical problems are bad, and will continue to deteriorate, and yet, as a minister, I have seen a lot of less fortunate people in some places, Well, that no sane (Black or White) man would go. Hence the name firewalker in my e-mail. It is the mental distress, PTSD, and depression, to name a few, that are doing me in, robbing me of much if any desire to extend my life thru treatment, which would only extend things and rob me of all the things that I enjoy. For example, Drinking, I don't do NO excess, NO DUI's I enjoy a few with my friends, fine dining, when I can afford it , and by generous friends, it does not cost a lot to eat well, at home, Going out dancing and yes, a few shots and beers, BBQ's, ALL of which I am not supposed to do. 1 year if i am lucky, w/ no treatment, OR two or three with the above mentioned restrictions. As said in my original post, What would YOU Do?
                    Think about it!
                    Blessings to all
                    Alex44
                    PS - My psyhchrist told me that I should follow Lou Gehrig (and his disease), I am doing so and am making a written list of the Positives and the Negatives of my life. Not an easy thing, rest assured.
                    Blessings
                    S.

                    Comment


                      #11
                      Regret this rant - it all seems so trivial now - was in a very bad, selfish place when I wrote it.
                      Blessings S.
                      Last edited by alex44; 04-16-2021, 04:49 AM.

                      Comment


                        #12
                        ((((((Alex)))))) ~

                        It is okay. You need to vent, and this is a place for you to do that.

                        You need to let it all out. Don't allow it to simmer or boil up inside of you. Let it out. Express your emotions, your anger, your fears, your hopes. You have a right to feel all the things you feel. It hurts deeply to give up the things you enjoy, the things, which make you happy or feel like your life is somewhat normal.

                        Have you made an appointment with a counselor, who specializes in treating cancer patients? If not, I strongly encourage you to pursue finding such a counselor. I feel that you need to connect with a counselor, who understands the cancer journey.

                        You need someone, who can answer your questions, to guide you and direct you in your decisions.

                        We all wish that we could reach back in history and have the lives we had, before a crisis disrupted our "normal." You are not alone, Alex.

                        Nothing about your life is trivial. Every moment of life has meaning and significance. Cling to the positive memories.

                        You continue to be in my prayers, Alex, and I ask for strength, peace and comfort for you.

                        Love & Light,



                        Rose

                        *Virtual Hugs Are Germ-Free!


                        THANKS!
                        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                        Comment


                          #13
                          Rose & everyone - God Bless you and yours. I am terrified, Yes, I have been given resources to contact, I will, My mind is so guilt ridden, I don't know what to do. I am not even sure I can get treatment due to numerous factors. A very scary place to be. I want to LIVE, so much I want to do, but, that said, I am not focusing on the material, (I was) I would rather do what I can to help others and be Spiritually rich then worry about materially rich. Thank you for your prayers, I will find out more tomorrow, I need to make a decision, like NOW, once made, I doubt I can undo it.
                          Thank You
                          Blessings
                          Alex44
                          AKA revstevefirewalker

                          Comment


                            #14
                            ((((((Alex)))))) ~

                            Whatever is feeding your guilt, you need to let go of it. We can't change the past. You know that God has forgiven you and understands your remorse. We aren't perfect. We're human beings, and we make mistakes.

                            I will be thinking of you tomorrow and sending you healing, positive energy. What you learn tomorrow will likely lead you in the direction of the path you will take. I recommend that you write down a list of questions to ask your physician(s). It is easy to forget what we want to ask, when we are scared and stressed. One of your questions might be, "What if I decide one way, then change my mind and want to go the other way?"

                            No one knows how long s/he will live. That is why it is important for us to live the best way that we can, while we are here. There are many ways to help others, through kindness, understanding, compassion, prayer, which are actually easy for us to do, when we allow ourselves to let go and give.

                            Many people have told me how blessed they are for having known, cared for, and loved Jonathan and Michael. They couldn't do anything for anyone physically to help, but they helped by being pure, innocent children of God, who loved and trusted freely.

                            When I was able to accompany Jim to his appointments, I learned that every single person he encountered was touched by Jim sharing our family history, and appreciated Jim's smiles, handshakes, and concern for their well being.

                            While we sat waiting for Jim's radiation treatment in the waiting room, the patient sitting across from us burst into tears. Jim immediately comforted her, told her what to expect, not to be afraid, and that it didn't hurt. When Jim went in for his treatment, I sat beside her, holding her and reassuring her. Another woman in the room walked up with kleenex, and then we all rallied around her to support her.

                            So, there are many ways that you can help others, regardless of which path you choose.

                            Try to glean the most out of each day, and feel hope and peace as you go forward.

                            Here is Today's Daily Word:

                            Pray for Others
                            WITH MIND AND HEART, I KNOW THE TRUTH FOR EACH PERSON I HOLD IN PRAYER.

                            A friend, someone said, knows the truth for you until you can know it for yourself. Praying for friends, family members, and those I haven’t met, I center my awareness in the truth that each one for whom I pray is a living expression of God, just as I am. Letting go of fear, I release thoughts of lack, illness, disharmony, or any limitation.

                            I see each person for whom I pray abundantly blessed. I see each one warmed and comforted by divine love that lifts their hearts and brings harmony to their relationships. I affirm their abundant living guided by divine love, wisdom, and understanding. I see each life unfolding in perfect divine order, enjoying security, health, and joy.

                            I will pray with the spirit, but I will pray with the mind also; I will sing praise with the spirit, but I will sing praise with the mind also.–1 Corinthians 14:15
                            This is my prayer for you ~

                            God Bless You Alex and give you strength and wisdom and guidance ~

                            Love & Light,



                            Rose

                            *Virtual Hugs Are Germ-Free!

                            THANKS!
                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment


                              #15
                              Pray and believe that everything would be fine. The choice depends on you as that is your life. Whatever you choice is, enjoy your life and live it to the fullest.

                              Comment

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