Friends and Family Support Group

This topic contains 4 replies, has 5 voices, and was last updated by  mulberry 9 months, 3 weeks ago.

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  • #143150

    myelomaukeventsteam
    Participant

    The Friends and Family Support Group is a new, online Support Group formed by Myeloma UK. It welcomes family and friends of myeloma patients to meet and discuss the issues facing them as well as offering an opportunity for social connections.

    The first meeting is scheduled for Thursday 5 May. Further meetings to be scheduled after the initial meeting and feedback.

    Please note this Group meet virtually. All meetings are held via Zoom.

    Meeting Dates for 2022

    Thursday 5 May 6pm-7pm

    Find out more here: https://www.myeloma.org.uk/help-and-support/support-groups/friends-and-family-support-group/

    Any questions, please contact: supportgroups@myeloma.org.uk / 0131 230 0419

    #146670

    teri1
    Participant

    Hi,
    I would like advice on what I can do to help my brother through his SCT treatment. I am his designated visitor.
    many thanks

    #146682

    kh0305
    Moderator

    Hi Teri1
    Hope your brother is doing ok following his SCT. I’m one of the forum volunteers and my dad had his SCT back in 2013. It is a tough treatment to go through and the stay post SCT can be lonely. I’m not sure how far through the process your brother is, but if he has already had the treatment he is probably feeling pretty wiped out and he may have changes to his appetite due to side effects such as mucositis, changes in taste buds etc. Hopefully he has access to a fridge/freezer so try taking in some home cooked favourites or if he has soreness form the chemo treatment some yoghurts/ice creams etc that are cool and easy to swallow. You may find he hasn’t much of an appetite but try and encourage him to eat and keep hydrated and it may be that foods he previously wasn’t so keen on become more appealing and possibly stronger flavours may be needed depending on how his taste buds are.

    Also lots of activities/games to keep him occupied when he feels up to it and calls/video calls when you’re not there so he doesn’t feel alone. Other than that just try and stay as positive as possible. It takes time but hopefully he will start to feel a little better each day. The fatigue was the hardest part for my dad to deal with but one piece of advice from his consultant was try and get up every day no matter how tough it may feel which is what he did, even if he had to go back to bed for a nap later. It definitely gave him more of a sense of purpose to move forward. He had 7 years in remission following his SCT and a relatively normal life which made those tough weeks worth it. I hope your brother is feeling better soon xx

    #148621

    sduffell
    Participant

    Hi
    My 83 year mother has recently been diagnosed with myeloma and has been in hospital since 2 Jan. The care she is receiving is fantastic. We are waiting for a specialist carer to be found and once that is in place and a orthopaedic bed has been installed she can be discharged.
    My concern is now with my 83 year old father, he is not coping well and we fear he may be heading for a breakdown. I live an hour and half away from him and work full time so am unable to visit each day. I do call him daily to check up on him. My question is what support can l get for him? He cannot use technology so anything online wouldn’t work. Any advice would be greatly appreciated

    #148627

    mulberry
    Participant

    Welcome to the forum.
    Your father may find it helpful to ring Myeloma UK to speak the Ask the Nurse service. Alternatively, or perhaps additionally there is a peer buddy service, potentially putting carers in touch with another carer who has been in a similar situation to your father.
    Your mother should have a named Clinical Nurse Specialist (CNS) who should be able to talk to your father and answer specific questions relating to your mother’s care, and any benefits that they may be entitled to, and any local resources and sources of support that are available.
    I have neighbours a similar age to your parents. The wife is now chronically sick which has fundamentally changed their roles and lifestyle. The husband has had to take on new roles which he lacked confidence in, and he became seriously depressed. He has needed quite a lot of support from our local GP, and antidepressant medication which he was initially loathe to take. However the couple are muddling through and the husband has become better at asking for help.
    In my neighbours case, until the wife was diagnosed, their lifestyle had been pretty “middle aged” and part of the trauma for them was realising that they are now “old”.

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