MCL Facebook Groups

GmaVee
GmaVee Member Posts: 17 Member
edited February 2023 in Lymphoma (Hodgkin and Non-Hodgkin) #1

I have read that there are some very active MCL Facebook groups. I do not have a Facebook account. In your opinion, are the Facebook groups helpful enough to justify creating a Facebook account?

Thanks

Comments

  • PKRW6019
    PKRW6019 Member Posts: 7 Member
    #2

    I don't know about MCL Facebook groups, but I joined a Follicular one for me. I lasted about a week. They gave me a lot of anxiety. It was just too much for me. Today is my first day on the Cancer Survivors Network.

    My lymphoma got active last year and transformed to an aggressive Follicular Lymphoma. I am currently undergoing treatments. Although I am physically doing well, I am emotionally struggling. I need some place to talk and listen to other people. I need people that are on the same journey as me, not people who have no idea what they are talking about, but think they can and should tell me how to live my life.

    I hope you find what you need and are looking for. I hope the same thing for myself too.

    Take care!

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #3

    This is a very inactive board. However there are some very smart and knowledgeable members. Hopefully you can link up with some of them. i joined facebook some years ago and got the same feeling. I lasted about a week. This used to be a very active and helpful board but many just quit actively participating because they felt censored and bullied by the staff. Nothing is private here including “private messages”. They read everything. Just the same I check in a couple of times a week. FYI I have follicular since 2001 and have relapsed twice. Fortunately so far no transformations! Best of luck.

  • PKRW6019
    PKRW6019 Member Posts: 7 Member
    #4

    Thank you ShadyGuy! It is so nice to talk to someone who has a long history with Follicular Lymphoma.

    When I was diagnosed in 2/2019, my neighbor across the street was diagnosed with a different B-cell Non-hodgkins Lymphoma two months later. He required treatments immediately and was in remission for 3 years. His came back as cancer of the bone marrow. They tried everything and because of other medical problems, he wasn't a candidate for a stem cell transplant. He passed away a few weeks ago. It was a gut punch for me.

    Last year as I felt things were changing with my lymphoma, I had strange or disappointment reactions from friends, family and even a therapist. One person said "your lymphoma must not be serious, you haven't had treatments". Another said "your lymphoma is very treatable, quit worrying about it". The therapist said "you are lucky you don't have lung cancer". I never saw the therapist again. It's no one else's fault, but my own, however it made me question everything I was feeling. I had my PET scan on a Tuesday, saw my oncologist on Thursday and he hospitalized me immediately. I have had an excellent response to treatments and I have promised myself that I will be a much better advocate for myself.

    I have started journaling recently. It is a place for me to speak/write freely about the good and the bad. I have one particular relative that loves me a lot, but she seems to think she has all the answers and should force them on me from loss of my hair to my birthday this week and how I should celebrate. I have tried to explain things to her, but I was met with deaf ears.

    Maybe at some point, I will find the support group that is the perfect or near perfect fit for me.

    Best of luck to you as well!

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #5

    I hope you told your therapist he was lucky he did not have lung cancer too! What a jerk!

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