AlD

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  • #150074

    ald
    Participant

    It took a hospitalisation for my diagnosis despite several trips to GP so seems positive that the GP has been able to get this identified. I’m in the RADAR trial which will likely be explained to you, broader treatment options than standard NHS. Ask about it if they don’t mention it.

    #150073

    ald
    Participant

    Sounds similar to where my girls are in some ways. They were with my when I collapsed and also saw me when I had a shaking episode in hospital but they are focusing on the positive. Taking it day by day and getting information sounds a sensible way to deal with this.

    #150051

    ald
    Participant

    Thanks Tony I’ll take a look at that option. Mentally I feel in a good place right now. The induction chemo has certainly arrested the most severe pain and I’ve been able to get mobile again in last couple of weeks. I have two further cycles to complete before stem cell. I’m finding that the biggest issues day to day are the side effects of the chemo around taste, constipation, impact on sleep and the like but on the chemo free days between cycles the pain increases just that little bit and appears in a couple of places it normally isn’t.

    Myelomamum, my kids are 20 and then 17 ye old twins. Their mum and I are separated and tbey live with her so I don’t have the same day to day challenge. I’m trying to be a better listener and work out what we will do or what we will plan to do when this is in remission. What I’ve found is that they don’t want to acknowledge that there is a possibility it won’t go that way so trying to respect them as young adults and give them the information about this without overwhelming them so they can ask questions when they need.

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