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Emotional support group recommendations

Maryqos's picture
Maryqos
Posts: 1
Joined: Sep 2015

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.

Evarista's picture
Evarista
Posts: 287
Joined: May 2017

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's picture
lindary
Posts: 695
Joined: Mar 2015

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
Posts: 58
Joined: Mar 2018

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

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