New to it all

This topic contains 9 replies, has 5 voices, and was last updated by  JustCathy 10 years, 9 months ago.

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  • #106066

    JustCathy
    Participant

    Hi,
    My name is Cathy my partner has myeloma just found out in July. We are trying to come to terms with everything, sometimes not to well but really trying to be positive for the family, I will tell you more about ourselves when we get to know you better,I must say he tells me to go on here and talk to people who are in the same boat as us, thing is he was not really sick just tired untill he started the treament 3 weeks ago (CDT) I know you will all know these medical terms we are learning fast. I just would like to say a big hello to everyone here I have been reading some of your stories very sad and also very informative hope you can help us out in the future and we can also help you, We are trying to be positive would like to know was the first time treatments hard on yourselves or your partners we are having so much doubts about it all can diet help and when does it if ever get better the treatment I mean.

    Yours Hopefully
    Cathy

    #106067

    jmsmyth
    Participant

    Hello Cathy

    I am sorry that you are in the position to join our gang. You are very welcome. I am also a carer. My hubby has SMM and not yet in treatment so I don't know much about it but rest assured that these lovely people here are a mine of information. Someone here will be able to help or advise where to go. They will support you – as they have me.
    Take care and my best to you both
    Love Jean x

    #106068

    eve
    Participant

    Hi Cathy
    My names Eve and I am a carer,6 months ago i was standing were you are now!!
    I can only tell you this site is full of nice people,who will try to help and keep you positive as much as they can,they will be there for you in good times and bad.
    Some people sail through this treatment go in to remission,and we all cheer
    Some people do not and everyone will be here to support this person.Saying that it is not all doom and gloom,I come on this site and have a laugh most days.

    People are all different and medication effects people in different ways,that is why,this mm is so hard there is no magic format.
    Welcome to this site,its a bit like a roller coaster, best wishers Eve

    #106069

    brocho
    Participant

    Hi Cathy welcome to our merry band of people from all walks of life! I am the pateint and my partner is Jeff, I dont like using the word carer, we are in this myeloma journey together There are so many lovely people on here who can help when you need it and the helpline is brilliant too. I was diagnosed 5 years ago and I can remember the fear and confusion as if it was yesterday But things do get easier as treatment goes along you will begin to understand more and all those medical terms wont seem so frightening Like your partner I hadnt been sick before treatment, just in incredible pain for about a year,and the initial treatment was hard, leaving me exhausted most of the time. The best advice I can think of is to listen to your body and rest when you need to Its no good pushing yourself as you will just be even more tired, so accepting you cant do do everything you used to helps a lot Life does become more normal in the end , even if it is a little different Good luck to both of you I lokk forward to hearing from you Bridget

    #106070

    Min
    Participant

    Hi Cathy,
    I am a carer too, never said this before but I have two years experience of it! I know I would rather not be here, but I wish I had dipped my toe in the water earlier so to speak as the isolation of having a husband with one of the rarer cancers is mind numbing.
    Our nurse specialist was the only person we could refer to at the outset, and with the best will in the world she cannot know how we feel watching our loved ones.
    But now your here please feel free to ask about things you wish you had had the mind too at the hospital but forgot.
    We are not experts in the field of MM but we do have a lot of personal knowledge and experience and its can be helpful to know your partner is going along the same lines as most.
    We can also help you when you want to have a rant and dont want to upset your family by letting them think you have lost the plot. We are a happy bunch for the most part, and hope to hear from you again.
    Regards
    Min

    #106071

    JustCathy
    Participant

    Hi Min

    Thanks for your kind reply, we were feeling really sorry for ourselves this weekend but lots of set backs and the fact that the medication is making him worse is so frustrating, but hearing from yourself amd all the other carers on here who were kind enough to answer made me feel part of something. I am usually a very strong person have lost my sister to a brain tumour mother to a heart attack and my own father to cancer, and now we are facing this learning to cope and get on with it is tough suppose we will. As long as he is good i'm good but when he's bad phew I feel so helpless. Having to get back to work next week is another step facing friends will be hard but routine is what we need. My partner is back already trying to cope and doing well most of the time trying to save all his sick days for the future. He has most of his bad days at the weekend when he takes the chemo but thats good cause we are together at the weekend and I can support him. My work takes me away all week so its tough being apart during the week but thats how our life is we have been doing this for 10 years, we are so close, sorry for rambling on. He has had a very sore foot this weekend toes turning blue and very painful. Our own Doc does not know whats happening took some more blood tests but he has an appointment with his specialist on Thur so maybe we will find out whats happening to him. Sorry to go on so much but I feel better just writing to someone like yourself good luck to you and your partner he is lucky to have you by his side.
    Cathy

    #106073

    JustCathy
    Participant

    Hi everyone,

    Thank you all for your replys, I really appreciate being welcomed into you community, it really helped will chat soon my prayers are with you all.
    Cathy

    #106072

    Min
    Participant

    Hi Cathy,
    I believe you should have been given a card by the hospital that is treating your partner with phone numbers to ring in the event of a change in condition, reaction to the drugs or a temperature etc etc.
    Now I have no personal knowledge of PN periferal neuropathy as it seems to be THE only thing my husband has not had with this blasted illness.
    But and I may be wrong it sounds like the toes thing is something you should not delay to tell the team. If it is PN this can go on forever if he is on Thalidomide for instance.
    With the best will in the world I dont think GPs can deal with the side effects of drugs like thalidomide and you need the guidance of the Myeloma or Haematology team to deal with this.
    PN should not be left unchecked as DAI would confirm, but he is on velcade and the PN caused by Velcade can be reversed in time or with a lower dose.
    I strongly suggest a phone call in the morning to the hospital for some advise. if it is PN I am told coconut butter is usefull but I am sure someone will come along who knows more than i do as they will have personal experience.
    Regards MIn

    #106074

    eve
    Participant

    Hi Cathy
    I have to ask do you know what CDT is!!!! Eve

    #106075

    JustCathy
    Participant

    Hi Eve

    Yes its sad to say we know what CDT is got that all explained to us when my partner was first put onto all these treatments, and we did a lot of research on these treatments and their side affects.

    Cathy

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