By Riley Lewis Castro
When most people think of sex, the last thing they think about is cancer. That is not the case for me, or the millions of other people in the world that have had the unfortunate (or fortunate, depending on your outlook) ‘honor’ of experiencing this wonderful disease. I have attended many cancer related functions; and, other than cancer, they all have one complaint in common. Sex and the lack of education survivors are given before, during, and after treatment.
Personally, I was never talked to about sex unless it was to tell my husband and I, what many of us are told. “Don’t have sex without protection for 48 hours after chemo.” Fast forward a bit to my surgery consultation, which included a hysterectomy. I was told I could have sex when I felt comfortable to have sex, and that was the end of that discussion. I continued as if that part of my life was unaffected, when it so obviously was! My sex drive had dropped to almost non-existent, and at 25 that shouldn’t be the case. Let’s not forget I had a literal bag of shit on my side! Is that sexy or what? Bless my husband’s heart, he never said anything about it or complained when I would vent about the ostomy and not feeling attractive. I had no idea I was running on zero hormones, and my body was screaming at me to help it. I am not one to be shy when it comes to talking about anything and everything cancer, so I wasn’t embarrassed to talk about sex with my oncologist. I just didn’t know that was something I HAD to talk to them or ask them about.
After surgery and chemo while pregnant, having my baby, more chemo, and more surgeries, my lady bits and the rest of my body had been through some shit and sex was not on my mind. When it did happen, it was painful and unenjoyable. Did I voice that to my husband? Of course not! Why didn’t I, you ask? Because I didn’t want to admit ANOTHER part of our lives was changing due to this damn disease. I wanted SOME sort of control over my life, and sex is a good aspect to control, right?! After I went to my first colorectal cancer function where others were discussing this issue, I realized I wasn’t alone. The physical, emotional, mental, and sexual parts of your life change, and it doesn’t go back to “normal” after cancer.
I was still in a new relationship when all of this hoop-la entered my life, and it suffered significantly. After having my daughter, I went back on chemo treatments. When most couples are counting down the weeks until they can have sex again after childbirth, James and I were focused on managing my side effects and worrying about the precautions we had to take if we wanted to have sex. We rarely had sex during the months I was on chemo. We would spend time together on the couch, cuddle, or just hold hands. He would hug me randomly and kiss me when I’d walk by. We had to find a new way to be intimate, not just because we had a new baby, but due to the ‘big C’. In February 2016, I had my major surgery which included a hysterectomy. This lead to early menopause and no sex drive. I had no idea how to handle it, manage the side effects, or who to even talk to. My oncologists never mentioned sexual side effects to me.
Through research of my own, I learned what I was feeling was the aftermath of cancer, chemo, and surgery. Eventually I tried a few different hormonal replacements to manage the side effects, which did help; but it didn’t magically fix our sex life. At first, I don’t think it really changed. I began to worry that I was physically turning him off due to my scars. I was constantly paranoid he was looking for other women, turning to porn, or using whatever outlet he could utilize to relieve sexual frustrations. I drove myself crazy thinking that James just wasn’t attracted to me anymore and cancer had taken everything enjoyable away from me. I had many conversations with James about it. He swore that he was still attracted to me, but I didn’t believe him.
I had to realize that cancer didn’t just affect me. He was just as much part of this as I was, and I never asked for his side of everything. We had many long conversations about what we have gone through, how to deal with the lasting side effects, and how to just make it work. I am 2.5 years after diagnosis, 1.5 in remission, still battling side effects, and learning my new ‘normal’ which includes my unpredictable libido. The bottom line is, communication with each other is key. How else are you going to know what the other person is thinking and/or feeling if you don’t have the opportunity to talk about it? Also be your own advocate. Don’t be afraid to ask those questions because it’s likely your oncologist won’t talk about it. The best thing you can do for yourself is ask questions, and continue to ask them until you get answers that you understand.
Riley Lewis Castro, a featured survivor in the 2018 On The Rise, was diagnosed with stage IV colon cancer at the age of 24. Currently living in Florida with her soldier husband. She is full time mommy to a miracle baby and working as a therapist. She continues to encourage people to advocate for their health. Riley is passionate about raising awareness of colorectal cancer in those under age 50. She is nearing 2 years of remission. Her doctors are monitoring her closely with scans every 3 months.