• Carmen2014's Avatar

    Carmen2014 wrote on cllinda's wall

    My family my faith my health

  • Carmen2014's Avatar

    Carmen2014 started following

    User: Bee17

  • Carmen2014's Avatar

    Carmen2014 started following

    User: CancerNews

  • Carmen2014's Avatar

    Carmen2014 asked a questionMultiple Myeloma

    Getting ready to start stem cell transplant

    6 answers
    • Rolltidelynne's Avatar
      Rolltidelynne

      I was scared too but tried to hide that from my children!! First read everything that people respond:)) our experiences will help you!! Not everybody is the same but it can prepare you in case...
      1) the harvesting is uncomfortable but does not hurt:) have someone stay w you it will help to keep you calm:))
      2) yes the chemo they give you before the transplant is a doosey and it will cause your hair to fall out. But they will give you meds for the nausea. DONT BE SCARED TO USE MEDS THEY GIVE... Take them:))
      3) go to a wig place. I hated idea of a wig but scarves n hats weren't flattering. I went into a shop on a whim after my stem cell transplant. ( wish I had done before lol. The cancer soceity gave me a free wig but honestly it was ugly but I was appreciative. ) I went in and just started trying all kinds, short, long, every color!! I'm a blonde. Anyway I found one that made me smile!!! It looked like my old hair!! Suddenly I felt like me again:))) I ended up buying 3!!! Even one that was red for fun!!
      The reason this is important...in the hospital n while going through this journey, you will feel like your a bit lost:( you won't feel pretty or yourself. It's IMPORTANT to keep your spirits high and laugh!! Take a friend, a family member or go by yourself. I PROMISE wig shopping will be fun and a way you take back control of losing your hair and give you back YOU:))
      4) take things from home that make you smile!!! I'm a huge BAMA football fan n it was October during football season for me. I decked out my room!! Lol it helped:))
      5) take your reg clothes to wear that are comfy. Not everyone wants to be in pjs all day every day:)
      6) TRUST your nurses:)) they are trained n experienced w MM patients and the process of SCT:)) you will assigned one primary nurse who will be w you the entire time. Then she will explain to the night and weekend nurses your personality n needs:)) please listen to me here.. If she says take the nausea, pain, or anxiety meds, TAKE THEM!! They will not give you something you don't need!! Don't try to suffer through or be a hero. Please please take the meds they offer:)
      I only got sick (vomiting) twice but it was short lived:)) I slept a lot!!! I found this to be my best choice! It works so if you're sleepy -sleep!!
      7) they want you to walk after the transplant. I did but not really as much as they wanted. Ha ha But I put my makeup on each day and that impressed them:)
      8) do the mouth rinses to avoid sores. It's horrible but just do it quickly n the taste goes away quick:) EAT ICE!!! I ate ice all the time. My nurse swears that's the best thing to avoid sores! I never did get sores:)))
      9) let someone stay w you the first week at least in the hospital:)) you will want them there even if you sleep a lot:)
      I was in the hospital 17 days:) when you go home, you will be weak. Your taste buds will be off. Your appetite will be down. But you have to eat:( my nurses told me if you can't eat drink calories!!! So I did lol:) you will need help - LET PEOPLE help you:) like someone said above you will think you can do something but your body will tell you different once you start to do it:( don't get upset just listen to your body and let it rebuild:)) I didn't go back to work so I can't tell you that answer. But I can tell you it was THE BEST thing I ever did!! I felt better than I had in years after my SCT!!! You will be much better in a couple of months but really it takes 6 months go feel like yourself totally:( but depending on your work your drs will advise you when yo go back. My myeloma had done too much for me to return:(
      It's really not scary and you will see that when you meet your nurses n they help you:) I know I've prob forgotten something but if you have further specific questions I will GLADLY try to answer them. Keep us updated!! Good luck:)) But I know you'll be better than ever very soon!!!!

      almost 6 years ago
    • Debio's Avatar
      Debio

      I am very happy to see all the posts and the information. Please remember that not everyone has a support system that can stay with them, by your side, through the whole process. If you do, by all means, allow them to be there, for moral support, to be your advocate, to be your source of sanity. Many of us do not have that option. I have an incredible support system, but I could not ask any of them to use their sick time, vacation time, etc. I did not want my children; all in their teens to have to deal with it all. They came to visit me, I used my phone and my computer, and I did not have any problems dealing with it mostly by myself. I had spent 3 months in the hospital in a coma and 6 months in a nursing home recovering, so many had stepped up and seen me through that. The SCT was a piece of cake in comparison. The quicker you normalize your daily experience, the quicker you start to feel somewhat normal. At least that is my experience. Staying positive was the most important weapon in your arsenal.

      almost 6 years ago
    • Paul's Avatar
      Paul

      Done two. Find something to keep your mind busy and keep boredom away. I recommend funny (to you) DVDs or online movies. Audio books helped me. Topics of interest to you and engage your mind if non-fiction. Lots of good fiction or brain-candy out there as well. I have a list of positive songs that I played and enjoyed singing along (since the door was closed, it was all good). Happy to share if you wish.

      over 5 years ago
  • Carmen2014's Avatar

    Carmen2014 started following

  • Carmen2014's Avatar

    Carmen2014 shared an experience

    Oh No