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Find your Support Peeps.....

Updated: Feb 27, 2020

Before I delve into my cancer support group experience, I want to emphasize that that should not replace your “immediate” support system. Your friends, family and/or community that are there for the day to day things you may need help with. The shopping, cleaning, meals, driving you to treatments, things like that. They are just as, if not more, important. That being said, if they haven’t walked in your shoes there are things they won’t understand, try as they might. That’s where the cancer support groups come in. They get it. The anger, fatigue, depression, the fear, the side effects that come with the treatments, etc. You will learn how others got through some of the same things you are going through. While everyone deals with things differently (I can’t stress that enough), you can take away bits and pieces from different survivors stories that you can use to help you. Breast cancer survivors are one of the strongest, most supportive communities you never want to be a part of. But, can and will be your greatest means for long term survival (mentally and emotionally) if you find yourself unwillingly among them……

I went to the Friday afternoon support group at the Breast Cancer Coalition of Rochester (BCCR) that following Friday. I got there a little early (so unlike me). I was shown where the group meets and took a seat. The other women started coming in after a bit. There ended up being about 8 of us and the facilitator from BCCR who got us started. Some of the women come every week and a few of us were new. They ask you to say your name and diagnosis and whatever else may be relevant (years survived, treatment course, etc.). The facilitator started, and yes, she was also a breast cancer survivor. I was up next (I knew I should have sat at the other end of the table!). I told them my name, type of cancer, that I was newly diagnosed, recently had a lumpectomy and was still not sure of what my treatments would be or what to expect. The next woman was also new and had just finished her chemo. And it continued around the table. Some of the women talked about their treatments (they were further out and done) and the side effects. The hair loss, losing their eyelashes and eyebrows (wait, what? You lose your eyelashes?), issues with the treatments themselves, transfusions (some gone wrong), chemo brain, severe radiation burns and so on. By the time it got all the way around the table I raised my hand to speak. It wasn’t a thing that you had to raise your hand, I just felt like I needed to for some reason. I looked around the table and said, “I just wanted to let you know that you have thoroughly scared the shit out of me!” There was a moment of silence, they looked at each other and all at once they exclaimed, ”Oh no…we are so sorry, we weren’t thinking, we just get to talking, not everyone has bad side effects……..”. We had some further discussion about various aspects of treatments and side effects for the remainder of the lunch. When I got out to my car I thought about the conversations for a little while. I had a lot of emotions going thru my head. Then, it dawned on me what those women had gone through and survived. They were carrying on with their lives. They openly admitted that it had changed them in some ways, both good & bad. Although I was still a little scared of what may be coming (who wouldn’t be) I was at least informed about how bad it could get. That was knowledge I didn’t have previously and knowledge is power. They don’t tell you extent of the side effects at the doctor’s office or online. I guess that’s probably not a bad thing because I’m sure some that information might affect some women’s decisions on their treatments. My motto has always been, “Prepare for the worst but hope for the best”. I went back to the support group the next couple of Fridays to show them they didn’t really scare me off. The discussions were a little more general. I had to go back to work so I let them know I wouldn’t be able to attend any more. The BCCR offers a variety of support groups on different days and at different times. I did try some other support groups, both through the BCCR and not. Each group had its own unique dynamics. It was nice to be with other survivors who knew what you were feeling, thinking, fearing, but they just didn’t “feel” right. Nothing wrong with the groups, just not the right fit for me. I did find that doing some of the BCCR activities like the yoga and the fluid motion class were a type of support group in themselves. I think it’s important to have a support system/group that fits you. Don’t give up if the first one you try doesn’t feel right. Check out different groups. While I’m not the “sit down with others and talk” kind of person, others are. I’m active so being in a group of other survivors while doing something is more my thing. Be it yoga, fluid motion (sort of a dance class) or fly fishing (more on that later). You still talk and discuss and support each other but you are moving while doing it. A support group that you don’t “click with” may not be the best thing for you. Everyone is different, everyone responds to different things. Keep looking until you find “your” group. If you can’t find one that fits you, start one. You do you.

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