MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

An Update

Home forums Patient Message Board An Update

Viewing 14 posts - 1 through 14 (of 14 total)
  • Author
  • #10462

    Luke is now on the palliative care floor. His heart meds have been removed, and it sure shows. His breathing is laboured, he needs oxygen at all times. If he is off it for even a short while he becomes disoriented and can’t put words together. Of all of the things that have happened, watching him search for the name of a simple item is perhaps the most heart rending – since this all started what he wanted to preserve the most is his mind. He is a marvelously bright, articulate and humourous guy. Please God let him keep that.

    This morning I found him curled up in a fetal ball looking unkempt, small and scared, disoriented with his oxygen out. He told me he felt abandoned. He told me some other stuff too, but it was mainly gibberish. He had refused help to wash until I got there. He always does that… his day can’t begin until I arrive. He got a shower, a shave (my first time!), and his toenails clipped, and looked more his usual self by noon. Luke is a very good looking man, and his grooming has always been meticulous. Trying to keep him that way now is going to be harder, as he can’t help himself. It took two of us to get it all done.

    I guess the point of all of the above is to communicate my shock and grief. Monday he was sick, but still himself. Today he looks like the other guys on the palliative floor, helpless and very much in the process of dying. I spend a lot of time looking at that beloved sleeping face and being flooded by memories of four incredible years.

    We’ve had many visits from nurses all over the hospital to show their support. I wonder how far the story of what has happened has travelled?

    We’re working with an excellent social worker. She managed to prime the oncologist to do an outstanding job of telling Luke where he was at. He has taken it in. He knows what is happening. He is angry, there is no doubt about it. Mainly he sets it aside, but every once in a while it crops up. He does let his anger out with me – he is a carbon copy of Henry Fonda in On Golden Pond.

    Our biggest goal is to get some heart improvement so that he can have more good days, and to come home for palliative care. That is keeping him motivated to fight on. He is doing the best he can.

    Boy, isn’t this just the saddest, most maudlin post! I’m not sure I have really taken it all in yet, so writing about my day today is painful as hell! I’ll try to keep these posts a bit less wrenching in future, but I guess you’ve got the picture.

    Thank you for all of your prayers. My greatest prayer is that he not suffer, but be allowed to go peacefully and serenely.



    You can write whenever, whatever you need to. That’s why this group exists. This is such a difficult time that even if people can’t be there to hug you, we can at least try to encourage you. I can’t imagine in a million years what you are going through right now but I can guess you are going to go through a full range of emotions this next few weeks. You and Luke are in my prayers. My heart just aches for you. I’m sending you a ((((hug.))))

    God bless,



    I have been checking and checking for an update from you. I have been thinking so much of you and Luke today and praying for the best possible outcome!!
    You are one brave and loving lady. I am proud of you and Luke is blessed to have you.
    God bless you both.
    I wish like crazy I could say something wonderful and intelligent, but I can only say that I care.
    Please keep the updates coming if you can.


    Dear Margaret,
    We care too. Don’t ever feel you can’t share your sadness, grief and worry with us. You’re one of us.
    I want to tell you about my FATHER. It’s my mother who has MDS. My father died in 2000 of heart failure. Doctors told him that he would die of heart failure, and they were right. But, Margaret, my dad was told this in…1953! As long as your Luke lives, there is hope.
    You have great courage. You sound like a wonderful lady. Please know that all of us are with you in spirit and that we care.
    I’m not sure exactly how to send you a hug on the computer, but I’ll try! Here goes:
    ((((((( Margaret))))))))))
    ~~~ Janet


    Margaret :
    I am thinking about you today. It is really hard for you to go through this. I read your update, my tears almost come out.I understand and we care about you. Do not give up the hope, no matter what happen, God is always with us. I will pray for your and your husband.


    Margaret …

    The right words are difficult to come by this morning …. so, (((Margaret))) ….. thoughts and prayers are coming your way for both you and Luke ….




    After reading your post; it is with a heavy heart that I tell you that my prayers are with you to find the strength to handle the things that are coming your way. And for Luke to be able to come home to rest. But I too, think that as long as there is breath in his body he will fight; and with you by his side he will be able to win. My prayers continue as you continue on this journey.
    God Bless,



    Please feel free to say anything you feel that you need to say. When one of us here gets affected, we all get affected. One person’s grief is also another person’s grief. Even though we are not close physically, we are all close by in another way.

    I continue to pray for you, Luke and your family.

    God Bless,


    Margaret, bless you, you are not maudlin. Your words are beautiful & moving. We all should have someone like you to care for us when we need it.

    My thoughts are with Luke and you at this terribly difficult time. Much love to you both.

    many, many hugs,


    Margaret, Your update about Luke touched me so deeply that it brought tears to my eyes. I said a prayer to God that he give you strengh through all of these trials. Sometimes when we think the worst might though, there is light at the end of the tunnel. Don’t give up hope. You sound like such a special caring person.
    God bless you and Luke, Dee


    Dear Margaret,

    I’m so sorry….such sad news about Luke. Praying for a miracle.Thinking of you both.

    a BIG cyber hug,



    Dear Margaret,

    Wishing you both strength, courage and peace. It’s a very sad place to be, I’m sure that Luke feels your love wrapped all around him.



    Margaret and Luke,

    May God hold you bopth in the palm of His hand.
    Prayers and hugs, you are both much in my thoughts and indeed those of all of us on this wonderful forum.


    I believe that grief shared is divided while joy shared is multiplied. We are here to help divide your grief and praying that you will be able to multiply your joy. Let Like know that he has many, MANY people praying for him.

Viewing 14 posts - 1 through 14 (of 14 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.



Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert