[00:00:00] Adam Walker: [00:00:00] From Susan G Komen. This is real pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Sex and intimacy can be difficult for many women after breast cancer. You may feel your body has betrayed you and after treatment, you may feel detached or disconnected from the pleasure your body wants gave you body image issues may also affect how you view your sexuality and some side effects of breast cancer treatment can impact your sector.
Here today to discuss her breast cancer experience and to share some tips and insight about this very real survivorship topic is Shangri-La Jones. Shangri-La welcome to the show.
Shangra-La Jones: [00:00:49] Thank you. I’m happy to be here. Thanks so much.
Adam Walker: [00:00:53] Well, thanks for coming on and thanks for discussing a topic that, you know, maybe.
For some people to discuss, we’re going to talk through it. [00:01:00] It’s going to be great, but let’s start off with your breast cancer story. What can you tell us about your diagnosis, your treatment and what was happening in your life around that?
Shangra-La Jones: [00:01:09] Gosh. So my story is very interesting. Um, I wanted to offer free managed grants within our community to, uh, to the underserved community.
So I made a connection with Denver health and Hatton to bring out the mammogram bus. And we were there doing the event and they stated to me, well, why don’t you show people how it’s done and get a breast exam so you can start off. And as an example, that I was a little hesitant because I had just had my physical that year.
I was healthy exercise and take vitamins. I’m like, okay, I have nothing to worry about. And then a week later I received a call and it was not good news. They told me that they found several. In my breast and I needed to have surgery immediately. I was taken [00:02:00] aback. I didn’t believe it as how could that happen to me?
I watch what I eat. I exercise what’s going on here. So I contacted my primary care physician, got a second opinion and they all concur. Everyone agreed across the board that I needed to have surgery. So Denver health worked with see you. And they partner to make my experience. One of the greatest, although I received disappointing news, they made it a simple process.
They SME a patient advocate and the good news is, is that they caught it early enough so they could treat me. And so it wouldn’t end in a death sentence. So I was very happy, but the tr treatment was Olympia treatment and I’m here today because of those early detection.
Adam Walker: [00:02:51] Wow. I mean, that’s, that’s really, I mean, kind of amazing, you know, that you were doing this for the community and it turned out to benefit you in that [00:03:00] process.
Um, that’s, that’s fantastic. So I’m excited to talk to you today about a topic that we don’t talk about a lot, but it’s really important, uh, in your experience, what can you tell our listeners about the impact of breast cancer on intimacy in, on your sex life?
Shangra-La Jones: [00:03:15] It had, uh, a large and huge impact because when you go through treatment, it has an adverse effect on your metabolism.
Your libido goes downhill. Uh, it’s depression. Is it mentally? Physical and spiritually emotional. And for me personally, it was body image because I had a lot of scoring afterwards. One of my breasts was slightly larger than the other. At that time, particular time I put on weight because I really didn’t care anymore.
I was in that mode of depression and it was not a good look. I didn’t even want to take my clothes off to go shop. So I was very [00:04:00] insecure about that. So I kind of work alongside my primary care physician and did a couple of other things to give back, but it does have a vast impact on you mentally, because you’re not the same person.
And you can also suffer from vaginal dryness. Which I did, and a whole lineage of things that can make sex I’m pleasurable. So you’re not in the mood to have sex and you don’t want to have sex because of adverse impact. And that’s my personal experience. So,
Adam Walker: [00:04:31] mm. And so like what, what were some, so you mentioned the physical difficulties.
There’s, there’s the physical hurdles, there’s the mental hurdles. What were some of the things that you did to start to begin to overcome those.
Shangra-La Jones: [00:04:46] Well I’ve said baby steps. So, and it depends if you want to jump back in, some people try to do that. And sometimes it doesn’t work out, but my master plan was to take baby [00:05:00] steps to start with simplistic things, such as hugging, kissing, cuddling, and also sex toy.
And role-playing Pitt plays apart because what most people don’t understand is that sex is not just about the sex piece. It’s also about intimacy. So if you take those baby steps and build up for me, it was a better outcome. And some of the other things that for vaginal dryness, you have badges seal.
That’s an excellent product that you can purchase in any store. Walmart. Anywhere and get it and works. Great. Another thing I spoke with my doctor and garlic colleges about was the vaginal rejuvenation and that’s where they actually take a laser and they go in and kind of massage the walls. Now that does work, but it’s a little pricey.
I think once a session is about $720, but it’s, if it’s in your budget, it’s a good thing. [00:06:00] If not, and that’s some of the other things we have. With and biros is to, uh, see if we can get more assistance when it comes to those out of pocket costs and also was just making a vision board. How do I visualize myself?
How do I get on track? What are some of the things that I used to do? And what are some of the things that I’m not doing now? One of them was exercising my primary care physician. He came in with a dietician and they put me on the road. So recovery, in that regard, I started back taking my vitamins and stuff.
Moving back in society, society massage is another way start massage regiments with your partner so they can get to know your body again. And you’re getting to know their body as well. And one last thing that I liked was yoga, because yoga gets you to stretch those muscles that you haven’t used in awhile, or you may feel less secure, insecure about, and it gets you back into [00:07:00] your groove and your motion.
So those are some of the things that I use, but. Bottom line, always speak with your primary care physician or your patient advocate to get more details. But that’s on the conversations that we had that helped me out a lot in some of the things that I did on my own. So,
Adam Walker: [00:07:17] yeah. And, uh, you know, I feel like, and that was, that was great, by the way, like just how you walked through all of those sort of baby steps was really helpful.
Could you also walk through some baby steps around the mental side of it? Any advice you could share related to that?
Shangra-La Jones: [00:07:31] What the mental side. That is something where you have to come to group. As to where you are in your life. Because I was in denial. I, it was a simple case of I can go out and do this. No, you can’t do do those things anymore.
You’re you’re in treatment, your, your, your hair’s falling out. You’re exhausted all the time. You have to recognize where you are and live in a reality mode. [00:08:00] Also, you want to go back to speaking to your primary care physician and your gynecologist and patient. Another thing that they offered after my treatment was group therapy, where we all come together as survivors of people within the process.
And we talk about how we feel, what we’re going through. And since I was still trying to live my life prior to, they told me you’re doing too much, you need to learn to say the word. No, because you’re exhausted. You’re in a lot of pain and my pain was excruciating and that added to my mental capacity. It was just this as much as I could do to even make it to the bathroom by myself.
That’s how, and it lasted for over. Well over a year, but yet I was still trying to be on this committee, work with this organization. And I had to start to say [00:09:00] no, and let people know that it’s not about you as about me. I make no apologies for telling, you know, I make no apologies for taking my life back.
This is something that I need to do. And yes, I have to tell you no, at this point in time, because I’m not the same, Shangrila, I’m a different person now. So I need to get my energy back and go into those group counseling sessions and doing that one-on-one and then also talking to my family and closest friends really helped me out a lot.
And then learning one word and that’s no, so.
Adam Walker: [00:09:35] All right. So maybe we can dig just a bit into it. What you said, you said I’m, I’m not the same. Shangri-La I’m a new person now. I’m a different man. Does that, does that shift in thinking, is that really what helped you sort of reset some of those old habits?
And is that what helped you to sort of reset and say, no, I’m not going to do that. The old one would have the old shingle. I would have done that. And that’s great. The new one won’t and [00:10:00] can’t. And so is that, is that kinda how that works? It
Shangra-La Jones: [00:10:02] did, because it’s just being honest because I wasn’t being honest with myself and I wasn’t being honest with other, um, just to paint the picture.
I ha I have my career and I have to put that on hold because I had to take a month or so well over almost two months off of work and put that to the side. But I also was president of a lot of the organization and did a lot of community service work and working with the underserved. So my plate was full and then also trying to balance family and our relationship.
Very hard things to do. And I was still thinking that I could work out five days a week. I could serve on all these committees I could do. And I was simply exhausted and I was not doing myself a favor because the patient advocate and my primary care, they’re trying to move me along to help me heal mentally and physically.
But I kept getting sent back. And when I’m in, in, in the sister circle was what I called it is what’s M any one guy guys as [00:11:00] well, but it was, it was women, this particular case. And we were talking, we feel like we have to carry him, everyone on our shoulders, but who’s there for us. And so that’s when I made the vision board and saw where I really want.
I don’t have the energy to do all of this anymore. So something has to take a sideline and that’s where the word no came into place because I was living a false reality. And I think that’s something that when you are a survivor, You don’t feel that automatically you, you are that same person. You look in the mirror, monitor your shift, your scars, and other things going on, but you’re not, you’re, you’re not the same person.
You need to be honest with yourself and honest with the people around you and ask for help and say, listen, I can’t do this by myself. I can’t do this as no, and it’s not personal, but I need to, to heal. I need to heal mentally.
Adam Walker: [00:11:57] Wow. Wow. That’s [00:12:00] that’s profound. Um, so, so really just last question, uh, and this is just so great.
I really appreciate all the, all the wisdom you’re sharing with us here. Um, what advice would you give our listeners about how to communicate sexual concerns with their healthcare team? And with our
Shangra-La Jones: [00:12:17] partners now, see, that’s a hard one. Now, when it comes to your primary care physician and you got to college and the patient advocate, that’s very easy because I had a one-on-one with them and there was no judgment now with the partners.
What I I’ve I’ve noticed because I also have a really close friend. That’s a survivor as well. And that’s another segment where she was diagnosed, uh, in, in 2015, I held her hand. Diagnosed in 2018, the irony behind all of that, but being married versus dating. If you, if you’re in a relationship and married, it’s, it’s a little bit different.
And to me, I would think it’s easier, but when you’re dating and you have that [00:13:00] partner, one of the things that I did was, Hey, Come along with me, your patient advocate is there to advocate for you, even in your relationship and they will help you along the way. But one of the things that I did since, um, I was dating, I was like, well, this is your out.
And I know that sounds strange. You give him a present. Well, that’s a lot to take on. You you’re dating someone and then they get this diagnosis and I’m letting know this is what’s going to happen. Your patient advocate, they’re going to run it down. This is what the surgery is gonna look like. This is how she’s going to feel afterwards a potential, and this is what’s going on.
So I think it’s with that being said, I think it’s very important to get them involved in the business. And let them hear what’s going on and have conversations with them, uh, down, down the road and when it comes to the sex and you just have to be honest, and that’s a hard part because as women, we want it to be pretty all the [00:14:00] time.
You want to be exciting. Let me soldier all these things, but if I’m not in the mood and I don’t feel that way, that comes from the outside from the inside. Not the outside in, I can put all the makeup and do my hair, but if I’m not feeling it because the scars, I’m not feeling it because I’m in pain, I’m not feeling it because I’m not depressed.
Then that needs to be shared. It’s just honesty. And for me, that was the hardest part because you know, want people to see your insecurities. You don’t want people to feel, see you. Uh, not being yourself and being in that. No, no, no. And that’s the thing, even without the makeup, this is me without the lashes.
This is me without the curl here. Uh, I’m suffering here and I need you to come along with the ride. I promise you the ride to get better, but just, just, just hang in there with me. So,
Adam Walker: [00:14:55] and so, I mean, what I think I’m hearing you say too, and I just want to make sure I’ve got it. I, that [00:15:00] I understand is that essentially with your part, with a partner.
If you sort of set the stage and you set the expectations and you explain the physical struggle and you explain the mental struggle upfront. Then it makes those calm in the moment, conversations a little less difficult, right?
Shangra-La Jones: [00:15:16] It does. Because if you wait to the backend and try to pull them in, they need to take the journey with you.
Um, when you, when you first start, they give you all the information, you’re asking questions, your shelf. So, if you have someone there that’s willing to take the ride with you and spheres the journey, then they can go through through it with you. They can hold your hand and understand. And one of the things about it, women are not the only people that get breast cancer.
So men as well. So I have an understanding, so maybe they can help someone in their family and their community to survive this as well. And they understand what we’re going. As well, and take them to your counseling sessions as well, giving them opportunity to speak and [00:16:00] maybe some things that they haven’t told you that they want to say, and that gives them an opportunity to do so.
So
Adam Walker: [00:16:07] yeah, absolutely. Well Shangri-La this has been amazing. I love it. Your attitude, your approach, your passion for community, and really for dealing with this topic is really profound. Thank you so much for joining me on the show. Thank
Shangra-La Jones: [00:16:22] you. And thank you for having me. You have a wonderful day.
Adam Walker: [00:16:30] Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org for more on breast cancer. Visit komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @ajwalker or my blog, adamjwalker.com.