Survivors Guilt is Real

Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.  – via Wikipedia  

We’ve all lost people in our lives, family members and friends who we’ve loved dearly. But when you’re a cancer survivor, the loss of a friend you’ve met from your cancer journey stirs up a different kind of grief. It’s called survivor’s guilt, and it often has a different meaning for everyone.

In the summer of 2014, when I was diagnosed with cervical cancer, I joined a Facebook support group because I didn’t know anyone who’d ever gone through this type of cancer. I felt the need to find women I could talk to and who were feeling or had felt similar fears and anxieties as I was. The women I met were remarkable and supportive and from that online community I gained a small, but very close group of girlfriends. Women I talked to online every day as I went through surgeries and treatments. Women I shared stories of my life with because our bond became so much more than our cancer.

Just over a year ago, one of my beautiful teal sisters passed away after battling a recurrence. She was an amazing friend who shined brighter than anyone I’d ever met. She lived a few hours away and I had been lucky enough to visit her twice. The first time was for a benefit to help raise money to help her as she underwent treatment. She surprised us all as it turned into a wedding and she stood before us and married the man of her dreams. The second visit was full of sadness as she’d been placed on hospice. It was a difficult visit, but to hug her and hold her hand one more time and share our loving friendship was touching. A few weeks later she passed with her husband by her side.

I think of my friend daily. Cancer brought us together, gave us a friendship that will forever be engraved in my soul. But cancer took her from me, took her from her family. It makes me sad and angry at the same time. As a survivor when you lose someone to cancer, so many questions run through your mind. Why was her cancer worse than mine? Why did cancer take her away? Why am I still here?

Survivor’s guilt makes you wonder what made your diagnosis and treatment different from that of someone whose cancer took them away. You feel guilty because you’re still here to love and be loved, and they have left this world, leaving their loved ones much too soon.

Amanda’s friend Melissa

I’m reminded of my friend through old Facebook posts and text messages I refuse to delete. Though I only knew her for a little more than a year, she touched my life in so many beautiful ways. And when I feel that guilt rising up, she somehow brings me strength and lends me some of her shine. She is one of the reasons I became an advocate. The world should not have lost Melissa’s shine because of cancer. I’m lucky to have known her, lucky to feel her love inside me to help me push forward and tell other women about cervical cancer prevention.

Amanda Tanay is a Cervivor Ambassador and is raising funds to help get her to Cervivor School Florida. You can help make that a reality by donating to her fund.

A Cervivor’s wish list…

I wish we had better treatment for cervical and vaginal cancer. Treatments have improved over the years, but not drastically, and

they usually have really severe and sometimes life long side effects. Thankfully my treatment worked, but for many of my friends modern medicine is doing well to just keep the cancer from growing. For an amazingly open & gripping discussion about living with cancer, read my friend Erica’s story. That said we’re seeing small improvements almost daily. As a Cervivor School attendee I was fortunate to attend an inspiring presentation on the targeted immunotherapies currently in development at Advaxis. In fact, just the other day, researchers from the University of South Carolina identified a subtype of cervical cancer that responds differently to treatment. We’re not yet at a cure, but all of the dedicated researchers, scientists, and doctors working on these treatments renew my faith that one day we’ll have one.
I wish that when I told people about HPV and cancer they said “oh, I already know that.” Instead, I usually get head tilt and either eyes look down and they change the subject, or on a good day, they say, “what’s that?” When that happens, my brain has a little confetti party because then I get to talk about HPV, how it’s related to cancer, and how it’s prevented. Which leads me to my next wish….

I wish that people would stop listening to fake news about the vaccines causing all kinds of trouble. It’s not a giant pharma conspiracy. Vaccines have been safely given to hundreds of thousands of women and men around the world. The numbers don’t lie, but they can be complicated and difficult to understand. Yes, it’s your decision whether you want your kids to be vaccinated, but this is an important decision and should be based on sound science & evidence. I hope that you’ll ask me when you’re unsure or worried. I’m a little obsessed with HPV prevention, which means that I stay current on HPV research and treatment. If I don’t have an answer I can promise you that I’ll get one quickly. This is one of my favorite websites for HPV vaccine information and safety because the writer posts current, peer-reviewed, science-based information and research, but also explains it so we can more easily understand it.

I wish that my cancer was trendy. I do. I wish that I saw NFL players wearing teal & white on their uniforms. I wish we could illustrate the symptoms of cervical and vaginal cancer with lemons. But I’m afraid there are no cute lemons or hearts to share symptoms of my cancer. Vaginal bleeding, weird discharge, change in urination, and painful sex are NOT cute. While we may not have lemons, we DO have some really cool princesses. Last year they were getting their preventive care and this year they’re showing the impact of ACA repeal.

I wish that the local media would respond to my calls and emails to bring attention to cervical cancer this month. I’ve sent dozens of emails & made several phone calls to ask for media attention to our cause, with no responses. I keep telling myself that one day the folks at Susan G. Komen were on the ground begging for attention to their cause, too. Thankfully I’m not alone in these efforts and have a whole family of women and men working to bring attention to cervical cancer and HPV education. Slowly but surely my Cervivor family is making strides.

I wish that my scars were visible. My small radiation markers and a small incision scar on my abdomen are the only evidence that my poor body was overhauled, abused, burned, and poisoned. I never even lost my hair. Many of my Cervivor sisters have the same scars I do, but you would never know it to look at us. Our scars are emotional & invisible. We’ve lost the ability to have children. We’ve lost the ability to have crazy, raucous, carefree sex with our partners. We’ve lost the safety of knowing we have control over our health. We’ve lost relationships with family and friends, and so much more. Sometimes I wish there was an obvious scar for all that loss. I love a good scar, it’s evidence of struggle. It serves as a marker that IT happened. Whatever your struggle, a visible marker for others that you struggled and that your experience was REAL. I wish sometimes that I had some sort of visible way to show you the struggle that I’ve been through, what my family has been through, and what too many of my Cervivor sisters live through every day.

I wish there was no shame with HPV or cervical and vaginal cancer. When I had my first abnormal pap and learned I was HPV positive, I was so embarrassed and instantly ashamed. I’ve seen the misinformed posts online about how HPV is related to sexual promiscuity. Even the risk factors shared by medical providers reinforces this notion that only women with many sexual partners have HPV. While we know HPV is really widespread and very easily transmitted through simple skin to skin contact, the stigma remains. The shame prevented me from sharing my experience and reaching out for many years, but it didn’t prevent me from looking online and doing my own research. That’s how I found Cervivor, which was a life changer for me. I found a sisterhood of other women who were going through the same thing. That sisterhood emboldened me to share my own story in hopes that someone might see something in my experience to identify with and might help her feel less alone. Only through normalizing our experiences, sharing my story and my sisters’ stories can we hope to reduce this stigma for others.

I wish my friends understood why I am so passionate about advocacy and share lots of HPV and cancer information online. It’s pretty simple, really – I wish I knew what I know now. I wish I could have had the HPV vaccine. But I didn’t. And now I have a virus that will never go away and caused my vagina to try & kill me. I have a roughly 54% chance of living five years out from my diagnosis, so it’s quite possible that my vagina will try and kill me again. I certainly hope that it doesn’t, and I’m going strong at almost two years cancer free. I don’t want you and your children to go through what I’ve been through. If I can prevent even one person from experiencing the terror of a cancer diagnosis, or the shame in an HPV diagnosis, I will consider my advocacy a success.

Sarah is a 2-year vaginal cancer Cervivor and Cervivor Ambassador. When she’s not advocating for HPV, cervical, & vaginal cancer awareness she can be found having adventures with her supportive husband, shuttling their 3 kids, & teaching undergraduates about interpersonal dynamics at High Point University in NC. Read Sarah’s Cervivor Story here