Support Groups

There's a group here in [LOCATION] and, I think, nationwide, Breast Friends. And they're fantastic because it's all a group of breast cancer survivors that have been through similar, if not the same journey. And it really helps to connect with other people that know what you're talking about because family and friends don't get it. You can't understand it unless you've been through it.

I think that's it.

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Once you're done with chemotherapy and your treatment plan is done. For family and friends, it's over. They're done. You know, but for us, as survivors, it's never over because there's always appointments, and many of us are on long-term medications, and so, you know, every day we're reminded. Every day, when I look in the mirror, I'm reminded. I'm not, I don't look like I used to look. And, so, it's, it’s been amazing to have that support.

While my husband, my family, my friends are amazing, they don't get it.

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I go to a young survivors' group that meets once a month. And when I go talk to those women, and they are able to share, whether it's talking about how sex really is hard after cancer; how relationships and intimacy can be very hard; how it's challenging to be a parent sometimes because you're fatigued, and you're tired, and how do you take care of yourself while still being a good parent after cancer. So many things come up. But talking with the women, in particular, who've gone through what I've gone through, there's just a sense of kinship and a sense of connection.

And then I found another support group that also had sessions for kids. So, I thought that it would kind of-, I didn't fully understand exactly how the setting would be, but how it ends, turns out is that the kids are down in their own session having-, they have different, they have art, music, different modes of therapy to kind of process their feelings. And I am in my group with-, with other people in different stages of the cancer journey. And no, I just…

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We 're completely all different types of women. But I they're-, I can't do without them.

And that's ongoing for you and your kids?

Yeah. They've become a part of my network. And I also have another group, which is less frequent. This group that I go to is every week, and then I go to another group that's like every—well, once a month, and I think as the sessions move on, it's going to be every two weeks. So, I don't know. I just feel committed to them.

Well, one thing, it's just funny how things happen.   I was just reading a neighborhood paper.   and in the paper, there was a person who had a big article talking about metastatic breast cancer. And she was a part of an organization called [organization]. And I read her contact information in the article, contacted her at that time and, ‘cause I knew, really, nothing about metastatic, even though I went to the doctor by that time, and, you know I was learning. But I needed support and talk to people--real people--that already had it. And she was like perfect for me--a black woman, beautiful black woman. In any case, I contacted her. She told me about [organization]. She picked me up and took me to my first [organization] meeting. And for those that don't know, [organization] is an organization specific-, targeting people they have metastatic breast cancer. And it advocates and supports people that have meta--and we have a meeting once a month or, in any case, we meet regularly in [LOCATION] and-and other places, we meet   as a group. It’s not a large group, but it's a very powerful group in terms of   educating people-, other people that have metastatic breast disease. And they, of course, do research on metastatic breast cancer. They have a bus that goes around, you know and advocates for

Talking with women who have gone before me has made all the difference in the world. I made it through cancer treatment OK because I felt like I had a goal and I was doing something. But the recovery is much more ambiguous. It's different for everybody. And I honestly thought that a few months after my mastectomy, I would be fine and back to normal. And I was really blindsided by the fact that I did not feel well. I had no energy. My strength was down to nothing. And my stamina was ridiculous. And I talked with other women and said to them my fears. And they told me, "No, don't be hard on yourself. It takes a couple of years to recover". I'm so grateful to hear that information. I was able to give myself some grace and to just chill out. I mean, of course, I want to feel great right now, but knowing that wasn't normal or, you know, not to expect that, made it much easier to recover.

And sometimes we call ourselves sisters in scars. And we actually have had a lot of fun as people do their reconstruction. We play show and tell. There's a bathroom that's not too far down the hall from where we meet at the church and we go and we play show and tell. Everybody wanted to see my tattoos, and then another girl got tattoos and we wanted to see hers. And we had a young lady who is 40 who was going to have double mastectomies come. And she, I said, "You want to go see what they look like?" And she said, "Yes." We went to the bathroom. She said, "Could I touch them?" I said, "Of course you can." She said, "Oh they don't feel like bowling balls." I said, "No, they don't." These are my implants. And she said, "They move and they're soft." And I said, "Yeah, they are."

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But, so, show and tell is important. If you're looking at mastectomy scars, but you want to think, but you, you want to see what could be, you need to look at somebody else's who's done this. It's important.

And it always, twice a year, the fall and the spring. So, I just went to a fall one and it was really nice. We had a fishing pond and we get to, got to fish. And we got to do crafts and art. And they did our makeup and did our nails. And they did people hair. And then we had a little like dance, a little dance. Dinner, they fed us breakfast and dinner and lunch for, like I said, it was a three day, two night, three day. And it just, this has been, this is my second time going there. And you get to meet other people. And you get to discuss, you know, how you're doing, what you want to talk about, what emotional help or emotional help, anything you want to discuss. And they uplift you.

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But they designated always around mountain, beautiful scenery, always around some beautiful scenery, like water, mountains, falls. It's just, it's always somewhere pretty. You get to relax if you don't want to, you know, go or participate. So, I was just always relaxing.

I joined a dragon boat team for breast cancer survivors, and that has been one of the most wonderful experiences of my life, and I never would have had it if I hadn't had cancer. Just this amazing group of fierce women that are athletes. And we all support each other. And we have a lot of fun. And we work really hard. So, that’s-, that's been very positive.

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The captain of our team, our dragon boat team, is the head of the exercise program at [LOCATION]. So, they are all about, they have a whole yoga practice, and meditation, and acupuncture, and massage. I mean, she's, it's amazing. And so, I do a boot camp once a week with her, and then we do our on-the-water practices three times a week, and there's a gym here in my building. So, and we're totally encouraged to be athletes and really push ourselves. And it makes so much of a difference. I mean, I know I was—Monday when I got the news that the PET wasn't good, and I was staying overnight at my mother's the next two nights because she needed someone with her. And so, I really wasn't focusing on it at all. And then Wednesday night, I got out on the water, and it was a beautiful night, and they kicked our butts. It was so hard. We're getting ready for a race. And we were just pushing, pushing. And at first, I thought, I can't do this. I, and by the end of the night I was just so happy. So, all of those endorphins and things.

So, I just searched; well, ‘young women with breast cancer’ and lo and behold, there's a page: young women with breast cancer. And then, I also searched for ER/PR positive groups because that was my cancer. And I found the pages and I just joined the groups. And again, you don't have to say anything in the groups. You can just read what other people are saying, or you can ask questions. So, that's how I found them and just joined them. And I, still to this day, I am part of the groups, because, I don't know, something tells me not to, I don't want to delete them, so I keep them. And if I can be the help of somebody else that asks a question as well, every now and then, I'll answer questions on that too.

I connected with the [ORGANIZATION] on Facebook, and they put the word out on male breast cancer. They travel all over. And they were kind of a savior for me because I always knew that I needed to talk about this. When I went to the [ORGANIZATION] gathering, they do a photograph, and there were 16 men there, and I met them for the first time since my diagnosis in 2013. Sixteen other men with breast cancer. It was an amazing experience. It's like, we were instantly friends for life, as though we've known each other because you have something in common.

You don't have anyone to talk to. I can talk to my friends about it, but they don't really have an understanding, which is—I understand that completely. So, that was a life-changing experience. It truly was. The minute I walked into this hotel lobby where they were having a meet and greet, we just threw arms around each other and hugged. And I wanted to know their story and tell them mine and find out about each other. It really was incredible.

I'm ever grateful to my group. But when I joined this group about a year and a half into my cancer diagnosis, I was looking forward to a place to talk about a lot of these fears and anxieties and fear of dying and wondering how other people cope with that. I've brought that up in the first group, and it was very clear people did not want to talk about that.

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Even as people were getting sicker and sicker, we'd ask about their health status. But nobody, one woman, actually, there was one woman, the first woman to die talked about her likely death the most. But no one wanted to go there. And another woman, as I'm remembering the second woman to die, I remember her bringing it up with actually the leader of our group when we were just, the three of us were somewhere in the kitchen preparing some food. And the leader didn't want to talk about it. And I felt badly for her, because I felt like as a group, we were not able to support her. And I should have been braver or something now that I, thinking back, and should have said to the group, look, we got to, well, I don't know that you could do that, though, because people aren't ready unless they're ready.

And so there's a lot of things you can do for yourself, and I wasn't doing any of them. And so, one of the suggestions that I had gotten a packet from a hospital was to attend a breast cancer support group meeting. So, I made the reservation to go. It was at the hospital where I had been, had my surgery, and my husband took me that day. And there were 45 women there. It was a huge group, and many had very compelling stories. As a matter of fact, four of them were there because they were having recurrences. It's very, very difficult to talk to someone who's having a recurrence when you're just three months out of your mastectomies. I'm not ready to think about that. Scary. And I was on the top row of this huge lecture hall, and I turned around, and there was a young lady sitting behind me. And she introduced herself, and she said, "Deer in the headlights?" And I said, "Yes." And she said, "It's a big group." I said, "Yes. Don't think I'll be back."

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I left in a panic and found my husband. It had come too close. It was too close. And I, I went home, and I cried most of the way home. And I told my husband I would not be back. This had done nothing for me but make me scared and frightened.

Even if I needed to or wanted to, I couldn't go to just the breast cancer. It's all women. They're not going to understand and I'm not going to understand. I mean, you can do the support thing but it's-, I mean, women understand women. Men understand a prostate. And, you know, that kind of, it's a group. It’s, they're all understanding the same thing, or the grieving, or whatever it is that you're there for, therapy or group therapy, but there's not. And then, especially in the transgender community, there's nothing. There's no support things for any kind of cancer, so where do you? And they were like, “Oh, well go to a men's then.” Well, I mean, they're not going to understand where I'm coming from. I mean, you can tell your story, but that's all it is - it's a story. It's not something that you can relate to. It's just me going there and telling it. So, that was dumb in my head.

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I think the support thing in the LBGT community, there's not a lot of support for a lot of different things. And that's too bad because still human, still have the same problems, still have the same issues. There's just not. So I did it all on my own. And I had to.

I find myself around a lot of survivors. Only a few that's like, that's in the chemo doing it. I just, they make me so happy because they're survivors. I wish I could, you know, be around some that's living with it, like how do you get out the bed? My question is how you get yourself out of the bed? How are you and your family communicating when you're so tired? Or have you talked to them about if you died, when, I don’t know! I just want to ask you some for real questions.  And I'm scared because I want to know some for real answers. I don't want to beat around the bush because I'm way past beating around the bush. I've been dealing with this coming up five years in March.

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Like, if you're single, intimate stuff, like how do you feel in a lot of things. Like, I had a friend, it's not like a boyfriend, but I feel like they think you're going to die, so they don't want to be close to you knowing that you're going to die. So, you be in the friend zone, you know? I want to know how does that feel, is, you know. Not somebody that's married, because they going to be there for each other. If somebody is single, these is my questions. Somebody that's single, children going off to college, you might be in the house by yourself, you know? How, how would you do? You just, just take life has, how it gives you? Just take it and be happy for what you have? I don't know. I don’t, I don't know. I just want to know. It’s no, and when I get in the group, it's just, it's happy. And I'm not wanting to be a sad thing. I just want to know real stuff.

DCIS is weird. I think, to people who don't have breast cancer, it’s cancer. But then to people who have cancer, my perception is that it's not legitimate. It's stage 0. And so, some people call it pre-cancer. It's like a weird in-between place to be. I didn't feel like this was a legitimate breast cancer diagnosis. So, I thought for somebody with stage 4 breast cancer this would probably seem like nothing. And part of me didn't want to go into a place where people at stage 2, 3, 4, and then here somebody with stage 0. I didn't want to be dismissed as like, this is nothing.