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.

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 230 total)
  • Author
    Posts
  • in reply to: It's happening again… #16660

    Carrie
    Member

    Butch,

    I am so sorry to hear the news. I don’t know much about AA but I hope that it’s treatable. She’s so young.

    I’m here if you need me.
    Carrie

    in reply to: It's happening again… #16647

    Carrie
    Member

    Oh no! I’m so sorry to hear that she’s having trouble. I pray that it is nothing so serious.

    If you need to talk, you still have my number.

    Carrie

    in reply to: Mike passed away today #16498

    Carrie
    Member

    Sandy,

    I am so sorry to hear the news. My thoughts are with you today.

    We understand.

    Love,
    Carrie D.

    in reply to: Low platelets again……… #16289

    Carrie
    Member

    Butch,

    I’m glad to hear that she is doing better and that it’s not AML. I hope she is still doing well.

    I thought about you the other day because I heard the Goo Goo Doll’s “Better Days” and I remember you quoted it last year. Well, I am having better days as is my mom and I hope you are, too!

    Merry Christmas,
    Carrie

    in reply to: We lost the fight #15613

    Carrie
    Member

    Ellie,

    My heart breaks for you. I’m so sorry…

    Love,
    Carrie

    in reply to: One year ago today… #14604

    Carrie
    Member

    Nicole,

    It’s good to hear from you, too! Thanks for the well wishes. I got a good one so I know our lives will be rich smile .

    I guess I’m a peace. I mean, I KNOW all of these things but it still hits me hard from time to time. How are you doing? It’s been a little over a year for you, too, right?

    I haven’t talked to Kathryn in a while. I will see if I can reach her.

    Love,
    Carrie

    Quote:
    Originally posted by riley:
    Hi Carrie!

    It’s so good to see your post! Best wishes to you and your soon-to-be husband! I expect that you’ll see a moth again on your wedding day.

    Beautiful words of wisdom that you shared. You sound like you’re at peace, which is so good to hear.

    Do you keep in touch with Kathryn? I hope she’s doing well too.

    Nicole

    in reply to: One year ago today… #14603

    Carrie
    Member

    Susan,

    What you’re going through is normal. Just appreciate him while you have him and shower him with love. We are so blessed to have the time to do this and I truly appreciated the time we had with dad. We left nothing unsaid.

    My father’s fear was not knowing what to expect in the whole process. My dad’s hospice doctor spent some time telling dad what would physically happen to him and how they would manage his symptoms. They also let us know what symptoms to look for if he couldn’t speak for himself.

    I think the fear of pain and suffering is worse than the fear of the afterlife. Obviously, I can only speak for what my father seemed to feel but I think it’s true for most people.

    Love,
    Carrie

    in reply to: Mom finally at peace #14851

    Carrie
    Member

    Lucy,

    I am so sorry. We’re here if you need us.

    Love,
    Carrie

    in reply to: One year ago today… #14600

    Carrie
    Member

    Susan,

    I won’t lie. It’s not easy because I miss him so much.

    Here are some things that helped me:

    – Knowing that he was ready to go. He was always so scared and worried about dying until he knew that there was no other option. Then, peace, happiness, and faith overcame the fear. His body was failing him but his spirit was SO much stronger than that and needed to be free.

    – Faith. I’m not sure what you believe but if you believe like my family does that a higher power has greater things for us then it becomes a little easier to deal with. My faith has grown stronger in the last year.

    – After my grandmother died, someone said to me “Remember that energy cannot be created nor destroyed.” We are energy which means that we existed before we were born and, somehow, we continue when we die. If you think of it that way, everyone’s energy is still out there smile . If you have ever been present when someone died, you’ll know what I mean. It’s very powerful and the energy in the room during and after the death is very strong.

    – It’s cliche but it’s true that everyone who dies lives on in our memories and in us. I have memories of every aspect of him and I can recall him at any minute of the day. I also have videos of him but I haven’t really had the courage to watch them yet (except for the day that he died).

    – Support. Talk to people who are going through it with you or who went through it before. It really helps to know that the things you’re feeling, thinking, dreaming, are common in grief. Everyone suffers grief so almost anyone can be an ear smile .

    The heartache will always be there but it won’t be as constant as when the loss is fresh. It still hits me from time-to-time and probably will all of my life. My father himself could not talk about his grandmother without crying. I always felt weird about that but I know that feeling now and I totally relate!

    I hope this helps…
    Carrie

    in reply to: Back in the hospital #14804

    Carrie
    Member

    Terri,

    I’m glad that Bob is home. I hope he rests well and his counts stay up.

    Love,
    Carrie

    in reply to: One year ago today… #14598

    Carrie
    Member

    Thank you smile .
    If I see a moth fly by, I will have to repair my makeup! I’m very tempted to forego the makeup I’ll be crying all day anyway wink .

    in reply to: One year ago today… #14596

    Carrie
    Member

    Thank you all! Yes, it has been a year already. It went by so fast!

    My shower was a lot of fun! It kept our minds off the anniversary a little bit.

    I have a nice little story for you, though. Before dad died, his skin was peeling and someone said that he was turning into a butterfly. He told them, no, he was going to be a beautiful moth.

    After the mass said in honor of dad, while we were talking to the priest, a moth landed on my shoulder and looked up at me. My whole family was excited by it.

    But afer I looked down at it, the priest frantically shooed him away. Apparently, he’s freaked out by moths! LOL! He felt really awful when we told him the story smile . laugh

    It was nice to think it might be him saying hello.

    Well, I’d better get back to work. Thank you again for your support smile .

    Love,
    Carrie

    in reply to: 1 year ago today…. #12828

    Carrie
    Member

    BUTCH *HUGS!* Take care of yourself.
    Di/Scott’s wife… I wondered how Scott was doing. I hoped we would hear good news. I am SO sorry. Please call my mom to chat if you want, when you’re ready. We’ve been through everything you’re feeling.
    To everyone else, I read the board almost daily to see how you’re all doing. I’m sorry about the struggles you’re having and I rejoice when I hear good news. I hope to hear more and more good news.
    Love,
    Carrie

    in reply to: Holiday wishes #10819

    Carrie
    Member

    Butch,

    YEAH! Goo Goo dolls! Gotta love a Buffalo band.

    Thank you for your wishes. I hope you have a good Christmas. I know it will be tough for a lot of us without our loved ones this year. I hope you’ll be surrounded by family.

    I’ll be in Buffalo Friday night through Monday morning.

    Love,
    Carrie

    in reply to: dad moving to hospice tomorrow #10849

    Carrie
    Member

    Karen,

    Yes, this transition is very tough. I wasn’t there when dad moved from the hospital to hospice but my sister was. She cried as they called and loaded him into the ambulance because of what it meant.

    Seeing him there for the first time was so difficult for me. But it was the best place for him and they were so kind and gentle with him.

    I hope you have the same experience we had because it was so peaceful.

    I wish you joy and peace for Christmas.

    By the way, is he still getting transfusions?

    Love,
    Carrie

Viewing 15 posts - 1 through 15 (of 230 total)

Login

Login

Search Forums

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