Cancer and sexuality are two megawatt topics all on their own. Still when looked at together, the topic is rarely given enough attention, anecdotally speaking. Apparently, I was one of the lucky ones, my oncologists spoke to me about fertility.
As patients, we often have to remind healthcare professionals that we are complex people who bring our unique histories, beliefs, goals, attitudes, and priorities with us into exam rooms. Sex and sexuality are part of that human equation; I have yet to meet an illness that does not in some way affect a patient’s sex life or intimate relationships. That is why when we are not given information or told how our bodies will be affected over time, it implies that sex is beyond the pale or some other dehumanizing, ableist assumption. It implies that we are not expected to exist after cancer and AYAs simply deserve better.
2014 – 2016
Cancer forced me into an adult mentality towards relationships, among other things. As is common, my body reached some critical point of chemicals and stress and my sexual desire LP screeched to a halt. I lost all interest during treatment and it was honestly blissful not to want. It took a while once I was free of treatment, but my body eventually hit play and essentially fast forwarded through a second puberty, getting me back up to speed. In time I had feelings again and most of my body systems settled into relative predictability. So, I entertained the thought of dating again.
In that regard, it is amazing how much can change with a cancer diagnosis and how much stays the absolute same. Even now, the split-second intimacy becomes even the slightest possibility, I become a hormonal teenager. I guess I was genuinely surprised to learn and understand that cancer had not altered that. But I did discover that after cancer the risk of embarrassment or rejection suddenly became very small potatoes, as the saying goes.
The first person I was interested in after my diagnosis, my therapist said that even if it does not work out, they have already given you gifts. They have shown you that you can still have feelings for someone, that you can experience wanting someone like this. She told me “They’ve shown you that there are experiences to be had outside of cancer.” I cannot speak to how essential that was for me to hear as someone who had been single throughout my diagnosis and treatment.
2017 – 2019
I began the process and immediately encountered the problem I had read about in memoirs: when to disclose, i.e. when to “come out” as having (had) cancer. As a baby cancer diagnosee reading about this issue in 2014, I did not understand. I honestly thought it was simple — just tell the person ASAP, right? Well, in 2017 as a slightly wiser cancer patient dipping her toe back in, I began to understand the unique challenges.
I had gotten my share of mixed responses to people finding out I have cancer and so adding the element of romance ballooned my anxiety. Do you tell someone during your first conversation? Does it need to be done in person? What mediums are acceptable? Should you bring it up on the first date? Second? Third? When things become physical? When they start to get serious? Personally, so much of my post-diagnosis life involves cancer that it has been challenging even to have the first few words without massive lies by omission. “Tell me about yourself!” “What do you do?” “What’s your art about?” “What’s your writing about?” “Where do you live?” I will never know if that is the reason why after I told someone on our first in-person date and they seemed cool about it, they promptly ghosted me.
With forays into new relationships it is just impossible to tell how people will respond. Cancer carries so much baggage in our society that telling a brand-new person, whether you are trying to forge a connection with them or not, is exhausting each and every time.
And forget about sex post-diagnosis!
Not that it was an issue, but I was told not to exchange bodily fluids with another person for at least forty-eight hours after a treatment. I had to be celibate due to my radioactivity/toxicity and it genuinely was not a problem for me at the time. Still, I think back on intimate cancer oddities like that during this time of people deeming their rights more important than other’s lives. Maybe I have been wrong to despise the sentiment that the proverbial ‘ [you] could never be as strong as [me]!’ Apparently, it is much truer than I ever gave it credit for, and I think the LGBTQ+ community deserves another round of serious deference for their experience during the AIDS crisis.
I was twenty-seven and the only personal physical touch I had had for over two years was from healthcare professionals in gloved hands. In my mind I had been building post-diagnosis sex up as almost a second virginity to lose, even knowing the bullshit of that construct. So, when I found myself on a date that was heating up, I had to excuse myself to go to the bathroom. The choice presented itself: did I want to have sex, casual sex at that, finally, after all this time? I did. And honestly, the state of the world and climate catastrophes were a factor at that moment. I did not know when a long-term partner was going to come along and I did not want to die having never slept with someone again. This also happened to be the week after the deadly neo-Nazi rally in Charlottesville and I remember feeling distinctly grateful to be experiencing a human connection closer to love than hate.
Months later with a different partner I managed to experience an orgasm; my first by a fellow human. I do connect the fact that this happened only after my diagnosis, and credit my massive dive into self-discovery the last five years. Cancer has forced me to reflect on my feelings around self-worth in connection to relationships and pleasure; it has honestly been the best sex ed I have had. All of my sexual interactions post-cancer have been infinitely more consensual and balanced than they ever were before and for that I am grateful, and sad.
Still, just when I was beginning to become sexually active again, I started spotting regularly. Long story short, a survivorship oncologist mentioned to me in passing that that is a little-known long-term side effect of Temodar, a bit of knowledge unbeknownst to my neuro-oncologist. That was months before this current pandemic and I have since had a transvaginal ultrasound which detected a polyp, corrective surgery for said polyp, and had the regular spotting start up again. Was it the polyp ? Is it a long-term side effect from my chemo? Some combination of the two? No one can really seem to give me answers.
Despite the volume of funding going to cancer — between a lack of advancement in AYA therapies , our innately American fear of sex , much less anything to do specifically with the health of women , I cannot say I am surprised.
All of this is to show there are infinite interpersonal and sexual complications for the AYA cancer patient and I would love for that basic humanity to be assumed of us from the beginning. We reconcile with health issues most people expect to be dealing with in their fifties, sixties, seventies, but it is happening to us now, in our twenties and thirties. Our decisions made by necessity will always carry a different weight than those made by choice; when we are not given the information or told how our bodies will be affected over time, it drives home the belief that we are not expected to exist after cancer.
I have personally lived my life with my twenties screwed by cancer, my thirties now screwed by Covid-19 — hopefully by my forties I’ll be doing the screwing, and I hope the same for my fellow AYAs.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.org/contact/submissions/.