A safe space to share about taboo topics: Meet @verol65

TERESA: What brought you to Mayo Clinic Connect?

@verol65: In December 2022, I had a transanal excision of a very low rectal polyp. The biopsy revealed positive margins for adenocarcinoma. I had radiotherapy combined with Xeloda early in 2024, due to which I developed a rectovaginal fistula. In November 2023, a colonoscopy also showed a polyp facing the fistula. The surgeon I chose after getting three opinions suggested a radical approach: a two-stage Turnbull-Cutait pull-through with coloanal anastomosis, as a way of solving both the risk of recurrent pre-cancerous polyps and fixing the fistula, with a low probability for the appearance of a new fistula. He also mentioned that the surgery came with the risk for LARS (Low Anterior Resection Syndrome).

From my experience as a La Leche League Leader, I knew how helpful support groups of people who have gone through the same experience are. Hence, I looked for colorectal cancer groups in Mexico, where I live, but there were none, neither in-person nor virtual. Since I had often relied on the Mayo Clinic website for useful and trustworthy medical information, I searched there and somehow found Mayo Clinic Connect. I was looking for people who had undergone the complicated procedure and would be willing to share their experience with me: what to expect between the two surgeries, what the immediate post-surgery period had been like for them, what their life was like afterwards.

TERESA: What motivates you to take part in Mayo Clinic Connect?

@verol65: Emotional and informative support is so important when we go through life-changing experiences. Even when friends and family are understanding and supportive, there is another dimension when the words of comfort, the information, the tips, the suggestions, the listening comes from someone who has gone through the same thing or a similar situation. The shared experience makes a difference. Helping others, even if just with a virtual hug, and knowing they will appreciate it makes me feel good, brings me joy and happiness. It goes both ways: giving and receiving.

TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@verol65: Mayo Clinic Connect is a safe space. Since those who read the various forums are people who know how difficult what you are going through is, you know that they won’t laugh at you, they won’t rebuke you, they won’t make uninformed recommendations that mean nothing, they won’t throw empty words of false comfort at you.

TERESA: What support groups do you participate in?

@verol65: I am mainly in the Colorectal Cancer and Digestive Health support groups. 

I poke around in the Just Want to Talk support group, especially the discussion How about a laugh, (hopefully), for my daily dose of jokes. I also participate in the Caregivers: Dementia support group, because my husband and I have been caring for my mother-in-law who has Alzheimer’s for the past ten years.

TERESA: Tell us about a meaningful moment on Mayo Clinic Connect.

@verol65: A meaningful moment for me was when the Connect Director encouraged me to open a new discussion about Intimacy and sexual life living with colorectal cancer. Sexuality remains often a taboo topic, and I was not sure how my questions about intimacy with a low anterior resection would be received. I have a debt to that discussion called Intimacy and sexual life living with colorectal cancer. I plan to go back to it to share more about what I learned at a workshop and to share new aspects that have surfaced in my life since then. 

Other meaningful moments are when other members thank me for the information I share or the words of comfort I offer, sometimes doing so in a private conversation.

TERESA: What surprised you the most about Mayo Clinic Connect?

@verol65: I was surprised by the variety of support groups and how helpful and supportive the mentors are.

TERESA: What energizes you, or how do you find balance in your life?

@verol65: My work as a translator energizes me, except when I have to translate legal documents.

For the past 21 years, my volunteer work as a La Leche League Leader has been a constant source of happiness. I love to help mothers and families with breastfeeding their children. It brings me so much satisfaction. Sometimes, someone will come up to me or send me a message to express their appreciation for the support I gave them years before. Or they pass my contact information to a new mother or family, because they remember the difference the support I gave them meant for their breastfeeding and/or for the way they have been nurturing and raising their children.

Cooking new dishes, trying new recipes I share with my husband and our adult children or our friends.

TERESA: Tell us about your favorite pastime or activity.

@verol65: I love to cook. I like to try new recipes all the time. I love to bake bread.

I also like to read, listen to classical music or jazz, watch art movies with my husband, have philosophical or political discussions with our best friends or adult children, go hiking with my non-binary child and their girlfriend. I miss the possibility of swimming or biking regularly.

TERESA: What do you appreciate the most in your friends?

@verol65: Being non-judgmental and truly caring when one of us needs it.

TERESA: What food can you simply not resist?

@verol65: Dark, bitter chocolate from Belgium.

TERESA: What do you love about where you live or vacation?

@verol65: I don’t go often, because of the distance, but I love my parents’ garden.

TERESA: Puppies or kittens

@verol65: Both

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