Advice welcome

This topic contains 19 replies, has 10 voices, and was last updated by  Harmony 7 years, 6 months ago.

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  • #119956

    martinebbage
    Participant

    Lynda, I am 55 was diagnosed in June this year daughters of 14&17. If you read posts on hear (which is the only place a recommend you visit) you will see it is a very individual disease with people around 19 years+ others are less fortunate there are so many factors. You will need to understand exactly what stage he is at, for instance when I was first told I was going to be on immediate treatment to cancel my holiday in 2 months etc. etc. after it was investigated more with tests, I am very lucky to be smouldering with no treatment and leading a normal life at the moment, it could be months or years before I need treatment, when it does kick off there is varying treatments that then can give remission. I know exactly how you are feeling, your head will be all over the place, confused and anxious. The good thing, he is young so there are lots of options plus new drugs being tested all the time. Try and stay positive and find out as much as you can and ask questions of your specialist.

    Good Luck you are not alone.

    Main thing from others, is to stay positive

    #119957

    dickb
    Participant

    Hi Linda,

    first of all, don’t panic. We all started the same way, in panic and fear about what MM is and what it means to your life. Next, step back and take a deep breath. You’ve already done the right thing by finding this website and posting. I assume that you have appointments with the consultanat lined up, write down questions, don’t worry if they seem silly, you will need the reassurancethe answers will give you.

    The next best thing is to contact the MM nurses at MM UK because they will be able to offer support and advice.

    But the main thing is don’t panic.

    #119959

    bandityoga
    Participant

    Hi Lynda

    My husband was 56 when he was diagnosed with mm. I spent the first 3 months in a state of constant fear and couldn’t stop crying. We are now 2 years since diagnosis and although things are not perfect, we try to live each day at a time. I got diazapan from my gp to help me sleep. The nurses on this site are very helpful.

    Stay positive.

    Maureen

    #119960

    keithmt
    Participant

    Dear Lynda,

    We are all here for you and know exactly what you’re going through. This initial period is the worst because you have no facts and your mind is running wild. Once you have some more details from the consultant you’ll know what your dealing with and hopefully you’ll cope better with that knowledge.

    When my wife and I heard the words “incurable cancer” we were both in a flat spin. The “good news” for you is that your husband is young enough to tough this out and come through it. I was 62 in Aug 2013 when I was diagnosed with Stage 2 MM yet here I am now in complete remission and feeling great and living a full life.

    Keep posting on this forum and ask lots of questions both here and of your consultant. This is a crap illness to be diagnosed with but there is a great chance of a good outcome.

    Thoughts and prayers are with you both.

    Keith

    #119961

    Harmony
    Participant

    Hi Lynda,
    I know exactly how you feel. I was diagnosed with asymptomatic myeloma at the age of 40 in October 2013. My children were aged 7 and 10. The fear that you feel will eventually turn into calmish acceptance as you gather more information and see that this is a treatable disease – so there’s lots of hope. I know that the word ‘incurable’ is scary but, as my counsellor said, incurable means chronic rather than terminal. There’s lots of scary, outdated stuff on the internet so be selective about what you read. This website and the Mayo clinic in the U.S are good sources of information. I now manage to go for 2 whole hours without thinking about it. Take carex

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