Raising Awareness: Cervivor Provides Cervical Cancer Support Community

Tamika

In 2001, when I was 25, I was diagnosed with cervical cancer. I wasn't expecting it and it didn't make sense to me.

I was working as a broadcast journalist at the time. There are times when you have health insurance and times when you don't, and at 25, insurance wasn't something that I cared about—I just wanted to work this career I'd always wanted. So when I got the diagnosis, it was a complete shock to me, and I didn't believe it.

I got a lot of second opinions because I kept thinking, Somebody is going to see these doctors don't know what they're talking about and all these tests are wrong. I know now I was just looking for someone to say everybody else got it wrong.

But I did, in fact, have cervical cancer. I had to have a radical hysterectomy followed by chemotherapy and radiation therapy. When I was in the thick of my own existence with cervical cancer, it was horrific, it was traumatizing. As I met other people and I learned more about their stories, it seemed like, compared to them, I had a cakewalk.

What I've learned from creating this organization is it doesn't matter if you're a stage zero, stage four, terminal—whatever you are—when you hear those three words, "You have cancer," it is truly life-altering.

Morgan

I was 24 when I was diagnosed for the first time, and I ended up going through a metastatic recurrence in my lungs. Throughout all of it, I did not have the support of a survivor community. I was always the youngest person in the infusion center and on the gynecologic floor.

I had plenty of support from my family and friends, just not other survivors. The only other ones that I knew of, who had gone through a cancer diagnosis, were no longer with me. So, that really stuck with me and I thought my fate was, I'm going to die. Especially being diagnosed for the second time.

But then I stumbled across Cervivor on Instagram by their hashtag. And I saw they had values that aligned with my values and they were offering a patient advocacy retreat in Florida. So, I signed up for that and fundraised my way there because I was willing to take a chance.

As soon as I got there, it was like a breath of fresh air, knowing that so many others have been through what I've been through. That was back in 2017, and since then, I've become a Cervivor Ambassador. I really worked my tail off in advocacy here in Iowa, where I live, and I ended up receiving the Cervivor Champion Award from the organization. I have a really great partner ambassador here to help me. She's a cervical cancer survivor, too, and lives just eight minutes down the road from me, so we do a lot of teamwork together.

I've actually been in school for social work, and being a professional advocate went hand-in-hand with what I was doing. It really molded me into who I am. I graduated with my master's in May and I joined Cervivor about a year ago as the community engagement liaison. So I'm helping with the programming and support, along with everything else.

It's just a true testament to what Tamika does, what we do, along with all of our community members.

Tamika

Cervivor came about literally out of being pissed off. I was diagnosed in 2001, started sharing my story in 2003, and started the organization in 2005. Originally, I didn't even want to tell my story.

But, at the time, no one was talking about cervical cancer. I was seeing all these different doctors, and I kept hearing over and over again, "Oh, we see this all the time." And I was thinking, I work on national health shows, I am up to speed on the latest things, so I don't understand how you can say we see this all the time and I've never really heard of it.

Of course, there were brochures from the doctor that explained cervical cancer, but where were the survivors? Who could tell me what it feels like to have my body radiated from the inside out? I had the clinical side of it, but what was the real-life side of it?

So, I began looking for stories from other people with cervical cancer. This was prior to social media, and the websites I was going to didn't make me feel like I could survive it or tell me what being a survivor would look like. So, I created what I wished I had as a 25-year-old young woman with cervical cancer.

I started doing what I know how to do best: tell stories. I wasn't even thinking about telling my own story at first. I was thinking about finding people to tell their stories because that's what I always did—but nobody wanted to talk about it.

And that made me mad, but I understood it. I realized I would have to lead by example, I would have to talk about the rough things. I didn't grow up in South Carolina thinking, Oh, I'm going to grow up and talk about coochie cancer. But this is part of my life now. These are the things I talk about.

And do I get sick of talking about it? Yes and no.

Yes, because I'm frustrated there's still a stigma around cervical cancer. But no, because if I didn't tell my story, it wouldn't lead me to people like Morgan, it wouldn't lead me to all the other people in my organization who are now coming forward and sharing their stories, and they're doing it because they see at Cervivor, we're sharing our stories.

Tamika

This cancer comes with all of this heaviness, this dark cloud that's following it. The more I Iearned about cervical cancer, I realized all the stigma is BS.

HPV is so common. It's as common as the cold. Is it a sexually transmitted infection that can turn into cervical cancer and several other cancers? Yes. Do you have to sleep around with a lot of people to get it? I mean, it can happen. But you can also have sex with just one infected person and still get it.

One of the misconceptions is, people think if you get cervical cancer, you just get some cells removed. Or they think HPV is an STD you can get rid of, but it's not—and it can turn into cancer. People die of cervical cancer.

There are a lot of myths out there. So, part of Cervivor's role is helping people understand what's fact and what's fiction, helping people navigate through the muck of all of that—and using our stories to do it.

Tamika

Our stories are powerful, and when we use them, we can make change. If you look at what Morgan's done in Iowa, she's put the patient perspective of cervical cancer on the map. You can do that on a national level, you can do it on a global level, but, really, you should start in your regional area because you want to show that here, where I was diagnosed, where I live, this is where I'm making a difference.

Morgan

When we ask what Cervivor means to our community members, you'll see a few of them here and there who say, "This is the only place I can come." It's important for them to know they have a safe space and that we can help them with healing.

What we've been through is traumatic and no one should have to go through that by themselves. So, we make sure they don't have to.

Tamika

You know, honestly, just reach out so you know you're not alone. Whether it's an email, a direct message, a comment—we'll find you. We search the hashtag—#Cervivor—and people use it.

Morgan

I would tell someone just starting out, don't get fixated on the statistics. Because statistically, I shouldn't be here. And I just celebrated my five years, I graduated out of oncology. I don't want someone else to have to fixate on statistics and not be able to receive support and a glimmer of hope of what life could potentially be with a community behind them.

Tamika

If you put "cervical cancer" in a search engine or you're searching on social media, Cervivor will come up, but other stuff comes up, too, and it can be overwhelming, it can be very scary.

Our motto is, "Informed, empowered, alive." I want people to feel alive because when I was first diagnosed, I went to some of these websites, and it just made me feel like, "Well, if I survive this, life is gonna suck."

And let me say, it is challenging. Literally, just before this call, I made sure I took all my supplements because I know if I don't do it now, I won't be able to stand. And I made sure I put on my compression socks because I did not wear them at all yesterday and I know better.

There are a lot of things we have to do now that we didn't have to worry about before. If my husband and I want to have a weekend getaway, I have to pack all my stuff. And there's no natural lubrication in my vagina, so we have to be creative about it.

There are a lot of things like that, that if you didn't have someone else to talk to about it, who felt safe enough to talk to about it, where would we be?

So, at Cervivor, we share the good parts of it, that we survived it, but we also share the messy parts of it. We talk a lot about poop, we talk about sexual dysfunction, we talk about menopause. People think cervical cancer is easy. They think you have some cells removed, you have a hysterectomy and that's it. But it's a lifelong thing.

Technically, my cancer was caught early, but I had to have a radical hysterectomy, I lost my fertility. Going into medical menopause at any age is hard, but at a very early age, it is extremely hard and it leads to a lot of social and emotional issues, not just the physical aspects of menopause.

I'm glad I didn't die, but I have to deal with a lot of stuff to be in this survivorship phase. I don't complain about it because I am alive, but I talk about it because I never want anyone to feel like how I felt—alone.

We want people to know they are more than a file number. Cervical cancer can feel so isolating. I remember not knowing what the ribbon color was for cervical cancer, and people giving me pink stuff because when you think of cancer for a woman, you automatically think pink.

People need things to make them feel like they matter—that what you went through, we see you, we understand you. That's what we try to do at Cervivor.

Morgan

I think she nailed that. Just creating that safe space, and making sure people have that quality of life that comes with knowledge and community. And also the reassurance that if they're dealing with something and they're not sure what process to go through, whatever they're dealing with—it could be post-treatment side effects, it could be hormone replacement therapy—we'll help guide them, find those answers. We have a medical advisory board we can reference for questions. We just want to make sure that people know they're not swimming upstream by themselves.

Tamika

It always amazes me, when I see our hashtag being used and realize this thing we created is now in Africa, it's in Germany, it's in places I had never even heard of. They speak a different language but they are calling themselves Cervivors, they're ordering from the shop and wearing a T-shirt or a beanie that says "I'm a Cervivor," and that empowers me.

It fuels me up because even 20 years later, seeing our hashtag out there reminds me we still have so much work to do, and unlike other cancers, we have the tools to do something about it.

There's this whole movement to end cervical cancer, which is great, because we need to end it. As a society, we've been wanting to win the war on cancer for as long as I can remember. I hate cancer. My parents died of cancer.

With cervical cancer, yes, we can end it, but we still have people right now who are being diagnosed. And, sadly, some of them are dying. So I want to make sure the stories of the people who are impacted by cervical cancer aren't left behind.

I'm a self-proclaimed maniac when it comes to including the survivor voice. When someone is doing something, I ask, "Where is the patient voice?" Noel Brewer, Ph.D., from UNC Chapel Hill, said this thing and I loved it. He said, "We gave the data, but we didn't tell the story." As patient advocates, as survivors, we bring the data to life.

I remember the first time I saw cervical cancer data in the U.S. from 2001, and I realized, I'm part of that. And I said, "Let me bring the humanity to it. Let me personalize it."

It's important that scientists, researchers and other nonprofit organizations understand the power of the patient voice. Whatever action you want people to take—whether it's getting cervical cancer screenings, getting themselves or their children vaccinated against HPV, sharing information about cervical cancer—we're going to be the catalysts that make it real because we put a real face on it, we're not a stock image.

Truly, if you look at the photoshoots and the video shoots Cervivor does, it's really a reflection of my broadcast journalism background. When it came to cervical cancer, I understood very early on that we need to see real people. We need to say where these people are. We need to tell their stories.

Tamika

Our theme is "Take Care of You in 2022." Because of the pandemic, many preventive cervical cancer screenings have been drastically delayed, so we know we're going to see more cancer. We want our internal community to take care of themselves, and we want our external community of caregivers, survivors, patients, clinicians, and whomever to also take care of themselves, and help us share our message.

If you're behind on any type of screening, go get it done. If you've noticed any changes in your skin, if you've had any bleeding during or after sex, if you've had leg swelling or pain, talk to your provider. If you don't have a provider, see what kind of clinic or other Medicaid resources are available.

Share the resources and information we have because sharing is caring. You may not need it—though everyone needs it—but perhaps someone you know needs it.

At the end of the day, I want people to show that they care about below-the-belt cancers, like cervical cancer, the way they do about above-the-belt cancers, like breast cancer. Do we expect everything to go teal and white? No, because most people don't know teal and white represent cervical cancer, but they should care, because cervical cancer is something we can do something about.

You should want to know if you're at risk for cervical cancer. You should also want to know if you have precervical cancer. If you have cervical cancer at any stage, you need to know. So, we're really going to be shining a light on that as we always do.

As I always say, we talk about cervical cancer 365, but we're going to be off the rails in January, because we have to. If we don't do it, no one else will. Cervical cancer doesn't get the spotlight it deserves. And sometimes, when it does, the story is really about the HPV vaccine and stigma and shame, but we want to talk about losing our fertility and people losing their lives. How lives are changed because of it, but also how empowered we are to make a difference in this space for others, even when it won't make a difference for us.

Morgan

Even if you haven't been personally impacted by cervical cancer, we still invite you to come and read and watch and listen to those stories that are shared, see those faces that are behind the cervical cancer diagnoses, because they all matter.

Tamika

Everybody should care about cervical cancer. They should care because we can do something about it. For me, it's personal. But I also know that my legacy isn't going to be the lives I bring into this world, but it's going to be the lives that I saved. And beyond those lives that I am blessed to help save, there are lives that have been lost to cervical cancer and we still have to amplify their voices, because they matter, too.

Morgan

To go back to our theme, we're so used to taking care of each other, but it's time to take care of you, too. Follow up with those cancer screenings. If you need support, we're here. Just let us know.