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  brendadrumm | published about 1 month ago | Originally written in English Hello to other Myeloma patients

  Just saying hello as I have just found time to register with Rare Connect and to sign in. I was diagnosed with Myeloma in January 2007. Had SCT in July 2007 and in remission since then. Off all treatment since November 2010 and doing great.
  Looking forward to chatting

  Brenda
  4 replies to the topic — see all replies

  • 
    brendadrumm published about 1 month ago | Originally written in English

    Well there is no exact science to dealing with a diagnosis and there are different stages. The first feeling is shock, surprise, fear even terror. Then there might be a stage where you become accepting of the diagnosis and that is not easy. There is grief as you start to wonder if you will be around in a year's time, in two year's time etc etc There can be anger and a feeling of despair or 'why me'. Now to try and deal with any or all of these requires a mixture of different things.
    Knowledge - find out as much as you can about the disease, ask questions, buy a notebook and write things down as they happen and or occur and take the notebook with you to the next hospital appointment.

    Partnership - Understand that you as a patient are working in partnership with your medical team so you have to cooperate and meet them more than half way.

    Support - Draw on all the supports you have around you - be selfish. It might be the first time in your life you have needed help. Don't be afraid to ask for it, to take help and to let people know what you need.
    When you are ready maybe you might like to join an online support group where you can talk to other patients and family members about things that you might not want to articulate to close friends and family members, because you don't want to worry them.
    You might feel ready at some point to join an actual face to face support group.
    There are peer support structures where you can talk to someone who has been where you find yourself now and that can be helpful to just hear it from the perspective of a patient.

    Kindness - Be kind to yourself. It is not your fault that you have myeloma. Treat yourself to something once a day, once a week, once a month. Take the time you need for adjusting to the diagnosis and treatment. Laughter is a tonic and a wonderful type of medicine. Many people might feel that cancer and laughter do not belong in the same sentence but they DO!

    DO NOT GOOGLE MYELOMA ON THE INTERNET - I can't stress this point enough. Nowadays the first instinct we have when we hear a new term or medical condition is to go off and google it or look it up in an encyclopaedia - DO NOT DO THIS! The books might be years old and might tell you that you have months to live - NOT THE CASE. The internet is wonderful but unless you are looking at up to date, official myeloma websites, you cannot trust the accuracy of the material and links you are reading. Your GP and or Consultant in the country where you live will be able to point you to the local trusted site and or give you a booklet and leaflet about the condition.

    DO NOT GIVE UP HOPE - You will hear people saying BE POSITIVE! There will be many a day where you want to tell people exactly where to stick their BE POSITIVE comment but all they are really saying is to NEVER GIVE UP HOPE. Where there is life there is hope. Sometimes in the early stages of a myeloma diagnosis when we are physically weak, we might feel mentally low and it can be easy to let doubts and despair in. While these feelings have to be processed, the sooner we can reach for positivity and hope, the better.

    When people ask me how I got through it I put it down to the four F's! Family, friends, fun and my faith. All of these helped me through the tough days of treatment to get to where I am now. That is not to say that I am fine every day. Nooooooo! Each and every day is a battle in my head to push the myeloma aside and to live in the wonderful moment that I have before me at that point. It's hard - very very hard and that is why I use all the supports around me to help me get through it.

    If I had one sentence of advice to give to newly diagnosed myeloma patients it would be this:
    Hang in there! Don't give up! You can get through it.

    Brenda
  • 
    robpleticha published about 1 month ago | Originally written in English

    Thanks Brenda, I also published your sound advice here: www.rarediseasecommunities.org/en/communit...

    and had it translated into the website's other 4 languages. Thanks for the great words.
  • 
    brendadrumm published about 1 month ago | Originally written in English

    Thanks a million - hopefully someone will find it helpful.

    Brenda
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  hoppydot | published 6 months ago | Originally written in English Itching

  my wife had a stem cell transplant in May 2011. she is in remission and on maintenance program of 10mg revlimid and zomata. She is experiencing itching most annoying scalp. Benydril (sp) doesn't work, she hates steroids. Any suggestions
• 
  AllieFreitas | published 6 months ago | Originally written in English Welcome to the multiple myeloma online community!

  My name is Allie & I am the community manager from NORD. Please feel free to contact me through the community or at afreitas@rarediseases.org.

  We would love to hear your story!

  Take Care,

  Allie
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  robpleticha | published 9 months ago | Originally written in English Welcome

  Thanks for joining the MM Community. I'm Rob, one of the Community Managers at EURORDIS. If you ever have any questions please contact me through the website or at robert.pleticha.@eurordis.org.

  If you see a message here in a language that you do not know, just request the translation by clicking Ask For It.

  Each community member is invited to share their experience on living with myeloma. You can post your story on the homepage through the link in your profile.