Let me tell you about an online support group for people who have Chondrosarcoma

A Patient's Guide to Chondrosarcoma

Chondrosarcoma Questions

What does a Chondrosarcoma Patient have to say about group support?

Let me tell you about an online support group for people who have Chondrosarcoma. I was so excited when I found it, I joined immediately. Once my membership was approved by the moderator, and I had access to the group, I stayed up 'til 4 in the morning to read all the previous messages posted by the members. Well not all, but a lot.

I cannot fully express my happiness in finding others with Chondrosarcoma. My relief was so great I cried. After all, the doctors had told me that this was such a rare condition I probably would never meet anyone else, who has Chondrosarcoma. That is true where I live. But, you would be amazed to learn how many people with Chondrosarcoma from around the world who participate in this group.

It’s a great place to share yourself with others facing the same issues. They all know, understand, and care about each other very much. Amazing, isn’t it? I can't quite get everyone straight in my mind as to who is who. But I feel like I have a whole bunch of brothers and sisters in a big warm loving family! And cousins, aunts, uncles, you name it.

As soon as I began participating in the group messages, and getting acquainted, I noticed some common threads that we all seem to experience to one degree or another. I grew to appreciate that here was a group of people just like me, who could understand what I was talking about in relation to my cancer. And now, too, I can help the new members to when they are overwhelmed with their new diagnosis. I no longer feel like the only one in the world who has a different cancer that nobody ever heard of.

I really enjoy sharing of thoughts, feelings, and shared wisdom of experiences about Chondrosarcoma and related issues. It is interesting how diverse we all are. It's great to read all the different knowledge people have. I have learned and grown so much from having others with Chondrosarcoma to be in touch with. And there are all these Chondrosarcoma information resource files posted in the site. It would take me forever to search out all those medical articles on the internet, if I did it myself. It helped so much in communicating with my doctor, too.

Sometimes when I open my email and read through it, I cry. I think it is because I empathize, as in the ever popular, "been there, done that" recognition. Yup, there is somebody out there who knows what it has been like! They are going through the same kinds of things I went through! They understand!! Sometimes I think, “where were all these supportive, wonderful people when I was going through all this?" sniffle!

It has been such a relief. I don't quite know why. Perhaps I am being unburdened somehow, of feeling like I’ve carried so much of this stuff, alone, (even though I had family members who care). Odd. Isn't it?

I read my group emails with a smile on my face and joy in my heart, sometimes, because, we are, able to communicate all things wise and wonderful (and yes, sometimes terrifyingly awful), and we are strangers with strange bones in common that make us strangers, no more.

I cry because of the truly awesome way the human spirit can valiantly struggle against the odds, feeling devastated, and still hang in there to come out stronger and more beautiful than before. How is it we can't always see it in ourselves 'til someone else points it out to us?

I am amazed by the family members, loved ones, and caregivers knocking themselves out to help when they might be stressed because of what we are going through. But, there are other family members of Chondrosarcoma patients who are there to give support too.

It has been rough, but I am still here with a smile on my face and I wouldn’t trade who I am… and what I have been through! I am so incredibly grateful that this Chondrosarcoma support group is here for us to share our common bond. I spent so much time and energy searching for answers, which was often a struggle with many questions. Now, information is more available to me. And, even though I shed a tear here and there, my smiles outweigh them, and it is all worth it to know I have good support and good authentic resources, and help anytime I need it.

Sincerely,

Heather W

Chondrosarcoma Survivor

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This site was created in loving memory of Raj A. Megha.

Disclaimer:

This material should not be used as a basis for treatment decisions, and is not a substitute for professional consultation. It is further recommended that patients and laypersons looking for guidance among the sources of this webpage are strongly advised to review the information with their professional health care provider.

Last updated: October 16, 2006