Emotional support group recommendations

Maryqos
Maryqos Member Posts: 1
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I am a Hepatosplenic T-cell NHL survivor of 6 years. It was a very hard journey and I'm still feel like I'm struggling.

I have started to have a fear of relapse and I'm not sure why. I need to find a good support group where I can vent my fears to those who understand. My family is supportive but I don't think that they really get it. 

I would appreciate any recommendations.

Comments

  • Evarista
    Evarista Member Posts: 336 Member
    edited July 2020 #2
    Welcome

    Hi Mary and welcome to this forum.  Sorry to hear about your struggles; this is a difficult time for many.

    Given that so much is "virtual" right now, you may want to explore what's available through the Leukemia and Lymphoma Society (lls.org).  In addition to an online forum similiar to this one ("Groups"), they offer a variety of live group chats on a regular basis.  There is one specifici for lymphoma twice weekly and have added a more general one recently for stress/cancer, etc in the context of COVID-19. I participate occasionally and the one thing that I particularly like is that a professional (social worker, nurse) participates and moderates.  

    Look here for the list of live chats as well as other services listed on the left side of the page:  https://www.lls.org/support/online-chats

    And if you haven't found it yet, on the upper lefthand corner of this page, there is a chatroom that you can participate in 24/7.  

    Best of luck with it.

     

     

     

  • lindary
    lindary Member Posts: 711 Member
    edited July 2020 #3
    Mary

    Worrying about a relapse I think is a 'side-effect. I've been in remission about 4 years. The mass was in my abdomin so any time my gut feels weird I wonder if it is back. I think what makes it scary is that we don't usually know we have a cancer until it has really screwed up our body.

    Think of it like a scary movie. The first time you see a scary movei you are jumping out of you seat every time there is a scary scene. After that when you watch a scary movie you anticipate when a scary scene is coming up. Sometimes you are right and you don't jump. Other times you are wrong and you do jump. The more scary movies you watch the fewer scenes you jump at. Eventually you stop jumping or you stop watching scary movies. 

    Reality is we never stop jumping. I think as time goes on we just jump less often. 

  • DJS628
    DJS628 Member Posts: 77
    edited August 2020 #4
    Support Groups

    Hi and Welcome, Mary!

    We can be your support group.  Having been in remission for 6 years, I think, is superb! I wish we had a chrystal ball to see into our futures, but I have a feeling you will be just fine! I know it's easy to say:  "try to stay positive, stay strong..." 

    Fear of recurrence is common.  I like what Lindary said, that it's a side-effect! The fear is really real if you've already experienced a recurrance.

    I have been attending a support group through the cancer center in town where I live.  With the virus, we've been meeting virtually, but the people in the group are like family to me now.  We're there for each other and can share our feelings and experiences.  Ask your hospital or oncologist (or even your primary physician) if there is a group you can join even virtually for now.  It's been very helpful for me---going on 5 years now that I've been attending.  You don't have to be in treatment to be a member of the group; we even have 2 people who go because a spouse had cancer.  There isn't a time limit, either.  Two of the members have been going to the group since it started.  I'll have to ask how long it's been, but at least 10 years!

    I hope you find a group soon! 

    Take Care,

    Debbie

  • Cacho50
    Cacho50 Member Posts: 4 Member
    edited November 2020 #5
    Where are the long-term survivors groups?

    Hi Mary, I totally get it that your family does not understand. The only ones who understand are those of us who have gone through this. As much as I try to explain to people, cancer, treatment and its after effects are virtually indescribable.

    I was Dx DLBCL and treated in 2010, been in full remission since. However, I spent the first 3 years after my treatment in a complete fog, the next 4 years trying to get my bearings (which I never really got back), and the past 3 years have been suffering with crippling PTSD from my cancer year which was ten (!!!) years ago. I have been looking for survivors groups, but most are people who are still in, or fresh out of treatment. I can't participate because it triggers me. I cannot be the only person who is in this state. Obviously reading Mary's post, I am not. I've been in therapy and am taking meds for the PTSD, but need community support. Where are the long-term survivor groups? I live in New York City where we supposedly have "everything" and I've had no luck. Happy to do online, especially w the COVID situation.

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited November 2020 #6
    Have a look at LLS

    Try the Leukemia and Lymphoma Society. They have support groups for all blood conditions, for caregivers, and for survivorship post-cancer.

    Caregiver lounge: https://communityview.lls.org/groups/caregiver-lounge

    Diffuse Large B-Cell Lymphoma: https://communityview.lls.org/groups/diffuse-large-b-cell-lymphoma

    Survivorship - Life after cancer: https://communityview.lls.org/groups/survivorship-life-after-cancer

  • Evarista
    Evarista Member Posts: 336 Member
    edited November 2020 #7
    MSKCC online

    In addition to LLS, have you looked into the programs at Memorial Sloan Kettering?  I cannot speak to their quality, but they do seem to offer a variety of options here:  https://www.mskcc.org/experience/patient-support/counseling/support-groups-programs/connections  Links on the left-hand side for various support groups and their online community.

    Best of luck with it.

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