The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Social groups for brain cancer survivors

jenpro
jenpro CSN Member Posts: 5 Member
in Brain Cancer #1

Hi all, new member and caregiver here,

My sister is a brain cancer survivor of 10 years, she had a medulla blastoma "grade 4" and the base of her brain and went through chemo/radiation. She wasn't able to return to work due to her balance issues and short-term memory loss. As the years have gone on, her side effects have worsened, with tongue paralysis, sluggishness, and worsening memory and balance/walking. Ever since she went into remission, her friends dropped off and she has a hard time making friends. As her sister I do my best to socialize her and she volunteers at a museum once a week, but I know she'd do so much better if she knew how to commune with people who understand what she's been through. I see many post-cancer groups that are active physically, but she can't do those hiking/kayaking groups. She just wants to talk to people. She's so fun and wants friends.

Any tips I'd appreciate, especially in Western WA :) Or hit me up if you're in the area!

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Comments

  • Gracies_Mum
    Gracies_Mum CSN Member Posts: 11 Member
    edited November 4 #2

    Your sister's situation,- diagnoses and late effects sound quite similar to mine. Although I am a longer term (421/2 year) survivor. I have balance issues along with several other late effects. I wish I was in your area. I'm in northern Michigan. 😊

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  • ES_123
    ES_123 CSN Member Posts: 6 Member
    #3

    I'm a 38 year old, and am now a 15 year survivor of Medulloblastoma. Just like many others I have several disabilities, which I manage on a daily basis. However, I live in Wisconsin, but she can message me on here if she can.

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  • jenpro
    jenpro CSN Member Posts: 5 Member
    #4
    https://csn.cancer.org/discussion/comment/1725103#Comment_1725103

    Thanks, I'm glad you're in longterm survivorship! We're from the Chicago area and she lived in Marquette and Alpena, Michigan, for several years before moving out here to WA. She's in her early 40's as well. If you'd like a commiseration buddy, would love to connect you two!

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  • jenpro
    jenpro CSN Member Posts: 5 Member
    #5

    Thank you, congrats on your survivorship! I'd love to get y'all in touch together. My sister is in her early 40's. Also we grew up in the Chicago area and went to the Dells and Door County, WI, before moving out to WA :) What's the safest way for me to put you two in touch? It's a bit of a cumbersome process to have her create accounts and log in to things. She has trouble keeping up on emails :) Is there a safe app you recommend to connect? Thanks for reaching out!

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  • ES_123
    ES_123 CSN Member Posts: 6 Member
    #6
    https://csn.cancer.org/discussion/comment/1725268#Comment_1725268

    You can do private messages on here. If you do not want to contact on here, I just downloaded an app that is very secure and easy to login. It is a chat room, you can have private chatrooms. It is called Signal, I have attached the logo of it.

    signal logo.png
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