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This topic contains 4 replies, has 3 voices, and was last updated by  fendi03 8 months ago.

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  • #142216

    ree2112
    Participant

    I get so bloomin’ annoyed.
    I’m on 3 groups on Facebook for MM patients/carers etc. On all the groups there is a post from the admin saying the group isn’t medical just there for support blah blah blah. There is so much scaremongering it is unreal. 1 post was asking about swollen feet and ankles, is it common? 1 numpty said it could be secondary kidney failure. Way to scare the woman. I commented it could be a side affect as mine was but said speak to your medical team. Things like that annoy me.
    Yes I know… You don’t have to read them…You can always come off the group…
    It’s not always rubbish as there are a few (very few) sensible and helpful posts on there, like a SCT Recovery Chart, useful and there are some folk putting on pics and saying how good they’re feeling and things they’re doing post SCT which is uplifting. Sometimes there are notices of someone passing and people’s support to those people is heartwarming.
    Sorry my rant is over

    #142219

    mulberry
    Participant

    I think that our needs for these groups and what we want from them change over time. I found what was helpful to begin with got worrying (esp people I didn’t know dying) or irritating over time and I left certain groups whose ethos didn’t fit with mine and found others (not necessarily Facebook) where I feel a better fit.
    It helps me to learn about new treatments and to understand more about myeloma. I get this from a site called Smart Patients Myeloma, check it out if you are interested.

    #142220

    fendi03
    Participant

    I agree with Mulberry – our wants and needs do change of time, particularly when it comes down to things like Facebook. Some support groups are great (as ree2112 notes, SCT recovery chart etc) but when members post of those passing, it can be very distressing and triggering to those that have been diagnosed recently and have joined these groups for support.
    I always look to the Myeloma website for up to date information about diagnosis & prognosis because, as we all know, it is now more frequently being treated and referred to as a chronic illness.
    If in doubt, speak to your team is what I say.

    #142228

    ree2112
    Participant

    Mulberry – I’ll check that site out. Thanks.
    Fendi03 – totally agree if I’m doubt ask the professionals. That’s what I say.

    I’m a bit nosy and see how people react to their SCT and wish them well with a 👍 (like).
    I’m only a patient with MM and definitely not qualified to offer medical advice it’s not helpful but can comment if I’ve experienced similar but always sign off with ‘ask you medical team’.
    It really annoyed me yesterday when ankle swelling for 1 person was diagnosed to kidney failure by another. WTF???
    I’m no doctor I’m a patient who listens and it goes in 1 ear out the other. I listen to the good things I’m told it doesn’t qualify me to diagnose that what I got annoyed at.
    Sorry I had another rant

    #142229

    fendi03
    Participant

    Absolutely – Wishing fellow MM warriors well with their SCTs is EXACTLY what a ‘Support group’ is there for (as well as sharing experiences/side effects of meds).
    I can’t believe that escalated as quickly as it did to secondary kidney failure…how on earth?! Treatment is going to affect everyone differently but that is what your medical team is there for, they take care of our body and we take care of our minds.
    I do think this forum tends to be more upbeat with lots of patients sharing their positive experiences, lengthy remission times and developments in treatments (of which there have been many in the last 5-10 years alone and more in the pipelines).
    No apology necessary ree2112, I think a lot of us would feel the same way!

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