Family support….advice please!

This topic contains 3 replies, has 4 voices, and was last updated by  ellen 4 years, 9 months ago.

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  • #132709

    slcpcc
    Participant

    Thank you for taking the time to read my post. My dad has myeloma. Please bear with me while I outline the situation. He had treatment and was treatment-free for around 10 months. During this first treatment time he suffered a little with side effects from Thalidomide (nerve pain and discomfort in his legs). When he was restarted on treatment he ending up suffering hugely with peripheral neuropathy and they stopped treatment – this is now being dealt with through pain management and other drugs. He is still off treatment and paraproteins rising slowly. He has what I think quite significant nerve damage to his feet. He is not aware of the seriousness of the condition (maybe a good thing!) and he doesn’t really understand why people are so concerned. He doesn’t think he has ‘proper cancer’. My step mum is very concerned about him and his deterioration. She is now beginning to suffer anxiety attacks. I do not live nearby and have young children so feel really compromised about the level of support I can give – please do not judge me for this. I go to visit as frequently as I can, and I call everyday. She has no-one to really talk to about how worried she is (Dad is not a talker and she doesn’t want to have those sorts of conversations with him). It is difficult for her to get to talk on the phone without him around. She isn’t very IT savvy so online chats or forums are probably not a reasonable expectation. The local support group meets once every two months and she couldn’t go to the last one.

    Does anyone know of any other ways she could seek support and get the help she needs which is obviously very different from the way my Dad deals with things. It is just a messy situation which could be helped hugely by her having a buddy of some sort but I don’t know how else to help.

    I would really appreciate any suggestions. Many thanks

    #132711

    rosie1961
    Participant

    Is there a local Carers group? There is one in my local borough and I know they are very supportive in lots of ways.

    #132819

    compass007
    Participant

    Hi I really think Mcmillan is your very best starting point…..this sounds daunting to most, but they really are fantastic and give great support…

     

    Kind Regards

     

    Les

    #132823

    ellen
    Moderator

    Hello and thank you for your post on the forum.

    I am sorry to hear that your step mum is experiencing anxiety attacks and struggling to find support, I hope you don’t mind if I also make some suggestions? My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. We do have a number of services here at Myeloma UK as potential sources of support for your step mum – please do pass these suggestions on to her if you feel they are appropriate:

    • Talk to someone.  The Myeloma Infoline operates from Monday-Friday, 9am-5pm and is manned by Debbie, Jude and myself.  We aim to provide information and support to anyone affected by myeloma, and we are also here as a listening ear.  You can read more about the service here:

    https://www.myeloma.org.uk/how-we-can-help/talk-to-someone/

    • Meet others.  We have a number of services where carers and family members (as well as patients) can meet with others who may have shared experiences and can be a source of support – this includes Myeloma Support Groups (there may be other groups in the area), Myeloma Infodays and the Discussion Forum for carers on our website. You can find out more about these services here:

    https://www.myeloma.org.uk/how-we-can-help/meet-others/

    The Myeloma UK PEER programme is another option for your step mum to connect with another person who is also a carer of a myeloma patient. Connecting with someone else who may have some similar experience can be very supportive.  Contact through this programme is usually arranged via a one-to-one telephone call.  You can read more about the programme and how to access it here:

    https://www.myeloma.org.uk/peer-network/

    • Finally, do encourage your mum to talk with the clinical nurse specialist (CNS) at the clinic your dad attends about other local sources of support.  The CNS may be able to signpost to local services that might be a help.

    I hope this has been helpful. If you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email askthenurse@myeloma.org.uk with any questions.

     

    • This reply was modified 4 years, 9 months ago by  ellen.
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