When cancer enters your life, your thoughts immediately go to its treatment and whether you will live or die. Questions like “What type of treatment will I need? Will there be a surgery? How will it make me feel?” cross your mind immediately. I never thought “What will my sex life be like after this experience?” I just wanted a life. I didn’t think about how my image of self, or the image of me the world would see, was going to be transformed. I just thought, “Universe, help me get through this.”
It was only after my treatment that I decided to use whatever resources were available to me—even those that were outside of my comfort zone—to recover or discover anew the aspects of my life that bring me joy.
Here’s a little bit of my story:
A quest by a three year, four month, twenty-six day (every moment counts!) breast cancer thriver to get some of it back.
When cancer came into my life, my relationship with touch—and especially the hug—was transformed.
After my biopsy, the tenderness in my breast made any frontal hugging uncomfortable and awkward. My ability to accept hugs became limited, and I began to do a right side slide-in hug or just a shoulder squeeze. In the weeks that followed my biopsy, I would be positioned, examined, and poked to determine the next steps in my care regimen. Along this way, a technician or clinician would tell me that I was brave or give me a random hug, neither of which I found to my liking. I remember saying to myself, “This person is not welcome in my personal space.” But, when you’re in an emergent health crisis you seem to have no or very little personal space, and this dwindling of space is all in the name of saving your life.
As time went on I had many experiences where my boundaries were encroached upon by others for the sake of my well-being. As these boundaries became less and less distinguishable, I found touch more and more disconcerting. This loss of control, of who was allowed in my space, and aversion to the physical contact of others was in total contrast to my chosen life path as a physical therapist. As a physical therapist, I provided a healing touch to impact restricted tissues of a body or to enhance movement. Touch and its potential for healing, especially to developing young children and those living with chronic conditions learning to live with new environmental barriers, was something not lost to me.
I have always enjoyed simple touches, a collar adjustment from my grandmother, a hand-over-hand tool usage lesson from my father, my lover’s nose on my neck. But, my favorite touch has always been a hug. I remember the significance of hugs from my toddler years, when they offered comfort. I know their value now as an adult, to proclaim closeness and solidarity with another. And yet here I was—the “Queen of Touch,” who strived to provide confident, kind and connecting touch — being touched in a way that evoked a sense of awkwardness, disconnectedness and frigidity.
This disconnect grew when I had a port put in to receive chemotherapy on the right side of my chest, and those right side-slide in hugs became more challenging at a time when I, a touch-hungry person, needed them even more. On two occasions when my energetic niece and nephew jumped up to give “Tee-Tee” hugs and bumped the port, I could only hold my breath to keep from screaming out in pain.
As time passed, I began to pull back and increase the physical space between others and myself. So, you can imagine what this must have done to my intimate connection to my partner—and I’m not even talking about having sex yet.
We had to figure out how I could sleep comfortably with my port, and if I was feeling well a few days after chemo, we had to figure out positions for sex. It was a struggle—even before my mastectomy! After my mastectomy, I was extremely guarded with my left side and soon realized that I had no feeling on my left chest wall and that my shoulder’s restricted movement impacted my ability, yet again, to give hugs and to be close to others. Soon after I learned that I was not a candidate for breast reconstruction, my work as a hug-loving, “not willing to give up sexy or my sex life” woman began.
My quest to return to myself was further complicated by the medications I was going to have to take for the next 5 to 10 years. I found myself thrust into early menopause, experiencing menopause-related symptoms and some other side effects from the medications. Long term management of my estrogen-positive breast cancer now requires that my system have as little estrogen as possible, so my symptoms include: vaginal dryness, pain with intercourse, reduced arousal, hot flashes (for a while I was having 14 a day), and insomnia. All of these symptoms have impacted my ability to touch in a number of ways.
This story does not end tragically. This is what I did:
I moved off my old square of “what was” and started doing the work for “what is.” I began to work with an acupuncturist who helped me reduce my hot flashes—I’ve gone from having 14 per day to only having 2 or 3 at night. I’m working with a physical therapist to address the muscle weakness and sensitivity to touch following my mastectomy. I’m exercising regularly and taking an oncologist-approved supplement to help me sleep and reduce my anxiety. I’m also working with the PRISM clinic team at the University of Chicago to address the physical and emotional aspects of my challenges. This path has had not just pebbles, but a few boulders for me. I am sometimes fearful of the unknown or the things I cannot control. But, my desire to be touched and to touch is stronger than any of that.
Now, 28 months after completing my acute cancer care experience, I still have work to do. Some days I am more willing to put the work in than others, but I do have many joys to report.
The full frontal, “squeeze the life into you” hugger (if you let me) and “happy to get one back” kinda girl is back! Welcoming hugs, expected and unexpected, has returned. And, I’ve come a long way. I’m moving toward being a sexy woman who enjoys the lingering touch of my lover’s hand. I’m moving away from a woman who is fearful of intimacy. Most importantly, I am someone who no longer mourns the loss of touch. I celebrate each time touch enters my space and I am excited to respond to its ask.
Edited by Chenab Navalkha