Tuesday, February 26, 2013

Cancer Support Groups

It is often difficult for the advanced or metastatic cancer patient to find a local support group.  Many support groups cater to those who were recently diagnosed with an early stage cancer.  They do not understand the reality for advanced cancer patients...and many don't want to.  We are emblems of fear to them.  When I lived in Connecticut, I was lucky to be a part of The Busom Buddies which was sponsored by the Meriden-Wallingford (Connecticut)  branch of the American Cancer Society.  Although I was the only stage IV person there, this group was a bunch of sage, funny and helpful women who supported me and helped me along the way even though I was in my 30s and most of them were in their 60s or older.

I had hoped to find a similar group here....but it seems that in person support groups are harder to find...a pity I think as although you may know people who have had breast cancer, the collective experience of 10  - 20 women is far better and in the case of the Busom Buddies, we had a social worker assigned to us to facilitate and she was just great at making sure we stayed within our boundaries or had the clinical material to point us in the right direction if we had specific concerns or problems.  She was also associated with the local hospital which was a great help.

Here, in the Greater Dayton area, I joined the Noble Circle .....but lately I have been feeling alienated from that.  This was their brochure for their fundraiser the "A Wear Affair"  which was held this last weekend.  I didn't go.  Primarily, the name for this function turned me off.  I am not thriving.  I'm in the trenches and giving it all I have.  Their byline which is above no longer seems to fit.  Thriving? Hardly.  In my group of 15 women, five died within the first year.  Another member who is in the same boat as I am has said she's not going to be involved much as she has "Noble Circle Regret" because we have lost so many....and also, it often seems that even though there are members who are fighting advanced cancer with this group, we are in a minority.

Still....it is important to have some contact with others who are going through this....and there are several very good on-line communities for people who have advanced stage cancer.  I hope to be able to give you a whole list of links soon..but I will give you a couple and hope you can join in and add more.  I prefer to go to site which are monitored as there can be some really way out people and there are those who are "snake oil" salesmen who are advocating "cures" which in reality are just a profit maker for them...or those who can get very negative.

Here are some of the ones which I think are pretty darned good:

http://www.metavivor.org/Support.html

This webpage talks about the various support groups sponsored by Metavivor, as well as how to start your own and what to look for in a group.

http://www.advancedbc.org/

http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Online-Support-Groups.html

http://community.youngsurvival.org/

http://www.cancercare.org/patients_and_survivors

http://www.inspire.com/

http://cancerhopenetwork.org/index.php?page=findamatch&gclid=CLTFl4rV1LUCFUVnOgod0k8AxA


http://www.healthcentral.com/breast-cancer/?ic=1102

(Health Central's "support group" functions through their share posts.  PJ Hamel and Phyllis Johnson are the two people I have had the most contact with....and I thoroughly enjoy them.)

Even so....you will find that from time to time you will need to step back, or avoid some posts.  We have cancer.  Some of us won't make it....and that makes it hard.  You really do mourn these people when they die.  However, I always feel grateful that I got to "meet" them.

If you know me...you'll know that I am quite fond of A. A. Milne's Winnie the Pooh.  Even though it is approaching 100 years since Winnie the Pooh, bear of very little brain and more stuffing that he ought came upon the scene, Milne had wonderful insight and the book is filled with nuggets....

“How lucky I am to have something that makes saying goodbye so hard.” 
― A.A. MilneWinnie-the-Pooh

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