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I Know I Have Cancer But Please, Just Leave Me Alone With My Vibrator.

An unexpected diagnosis can cause even the most stoic of us to go searching, when often the thing we’re looking for is the thing we didn’t expect to lose.

By Anastasia Charisiou.

Art by Marlene Juliane.

Of all the love I have lost, time has been the most heartbreaking. It’s been my greatest ally and most poignant vulnerability. It’s kept me up at night as I count the people my age who have achieved great success; all those years I didn’t. It’s the means by which I measure my growth, but most of all, it quietly and surely reminds me of how much I have lost by not realizing when I am “in” it.

This prevalent, invisible hum engulfs me, never failing to make me worry—and yet, the only moment I didn’t realise time’s presence was when I was diagnosed with Hodgkin’s Lymphoma. I was twenty-two.

My six-month prognosis was a blessing in some aspects: a definite answer to four months of tests, doctor visits, night sweats, obscene itching and bruising. But despite all the physical evidence reassuring me I would be OK, I did not fathom the invisible parts of me it would affect.

You see, a funny thing happens in between hormonal injections and chemotherapy: your sex drive dries up. At the time I was told this, I didn’t really comprehend what it meant. I mean, who in their right mind is thinking about getting pounded when they’re about to fight for their life? Me, apparently.

What I didn’t realize was how much further this “drive” extended — more than wanting to feel a rush of adrenaline or a brush against someone else’s skin. The loss of this inconspicuous part of me marked the mourning of something I didn’t know I had to lose: my identity, as both a woman and a person. I no longer felt desirable or attractive. I no longer felt like I had needs (in ways far beyond my sexual appetite). I didn’t find myself interesting, my body became a stranger I occupied, clothing was something to conceal what I looked and felt like.

It was the very thing that made me feel like myself and without it I felt unlovable, unworthy and in my most private moments: ill-prepared for treatment. But I was twenty-two, alone yet surrounded, and admitting I was missing my sex drive felt like complaining about missing an ex: simply not worth it. Yet to me, these thoughts felt interlinked to my well-being. How? Well, the better you feel, the better you live, the greater you’ll fight. It really is that simple.

I mean, who in their right mind is thinking about getting pounded when they’re about to fight for their life? Me, apparently.

The parameters of a “sex drive” is like sex itself: it extends far beyond the paternalistic or masculine framework of how we have been made to envision sex for the past century. It’s no longer a one-size-fits-all experience, but it was still an experience I felt on the outskirts of. It was there, I could see it, I owned it once and I missed it now, although this time what I was missing felt abstract, or at least, I to it. This idea is strange considering sex is something that seems to be everywhere; it’s difficult to ignore in our lives but even more so when its presence is a reminder of something you are not a part of. It wasn’t that I simply wanted to sleep with someone, it was that I didn’t feel myself in any sense, and the idea of someone else bringing me joy or pleasure felt like the most irrational thought in the world. But time doesn’t wait, even when you are not ready to let go of it.

There was a nurse. She felt like the only living thing in my hospital room. She filled her life like a child’s coloring book: recklessly, with utter disregard for boundaries. She was my favorite part of treatment because by the time I noticed I had been injected with chemicals for the last several hours, it was the morning after the night before and I was a little drugged up. She was, too. She was in love and all my hopes for her couldn’t wither the turmoil of how unrequited it was.

Yet despite all the hours we spoke, part of me could never completely comprehend what she was going through. I was sitting with my own kind of mourning. This discontent with myself and my body suddenly made me disconnect with those around me and try as I might to understand them, I couldn’t understand myself or the idea of love. This thought kept recurring: if I couldn’t be kind to myself now, how would I be to those around me when this was over?

There’s no greater loss than one that hasn’t been embraced, which is why this aspect of sexual health during treatment is so rarely discussed openly. It’s hard to comprehend how intimacy could be of equal measure to our health, and in a lot of ways it can’t, but to dismiss it would be an injustice, too. So much of our identity, relationships and self-worth relate back to how we feel within ourselves and when that’s compromised, so too is our health.

Three months into treatment, I knew I needed to take my questions outside of my head, instead of waiting for someone to get into mine. Will I ever feel OK again? Will time simply continue to drag me into the abyss until I reincarnate myself into a hash brown or if I was lucky, Jane Fonda? Will my internal monologue always sound as dramatic as a Shakespearean soliloquy? Probably. But this was just a feeling, all form and no substance. Like a joke without a punchline, I couldn’t deliver it to anyone. It wouldn’t land well; it would simply be welcomed by the bleak, bottom line: you’re sick and next to that, this doesn’t matter.

My illness had cast me as a victor simply for not dying, however, there is a difference between living and having lived, between having a life and holding one of quality. If I was sick, I still wanted to be happy; I still wanted to feel connected to myself. I had given my body over to strangers to prod and test and inspect in wide open spaces. I had earned the right to control how I felt in it. Still, it was not the time for therapy or a topic I felt inclined to bring up with my girlfriends over brunch; that space was reserved for quietly judging the waitstaff, or blatantly flirting with them. Instead, I turned to the least emotionally invasive space I knew: the internet.

“Can you have sex during chemo?”
“Chemo-sutra?”
“Ryan Gosling riding a horse.”
“Tacos near me.”

I landed on “Sex and cancer.”

When we start these searches, high on vulnerability and hope, we know, deep down, that they can only reveal so much and what’s left is a reflection of ourselves. It is lonely, but universal. I wanted to know that fighting for living justified fighting for life, for what makes it worth enjoying: love.

As I sat in my mother’s bed, wrapped in her fresh linen, there it was. Sprawled out for me by strangers who too wanted more than the pain that had reduced living to simply “getting by.” Somewhere among these words of pain, frustration, and guilt lay this feeling. But there was an openness to these words, in these forums and blogs and medical journals, and I greeted it like an old friend: it was desire. These women, men, and doctors all expressed a desire to feel connected, to feel something enjoyable, to be seen, to be felt, to be known as more than a blood type or patient number. To have a moment where they occupy a space where time has no meaning because no one is counting it. Regardless of age or gender or treatment, these people all seemed to agree: losing something that feels so intrinsically linked to who you are, how you act and how you feel, ultimately impacts how you live. How you love and more than anything, how your body responds to you.

Sex wasn’t something I wanted for myself during treatment, I thought about it enough to know I would want it after, but before I could begin to imagine what that looked like with someone else, I had to meet myself again. This isn’t the case for everyone. There are those who will give it a red hot go during chemo, there are those that feel obliged to their partner to try, and then there are those who just don’t know what they don’t know. What unites all these differences is the moment we decide that we’re ready to try, again.

There is this guilt that engulfs those of us who are on opposite paths to our own health, desperately coaxing it towards us. We feel lucky (sometimes unclear as to why) to be alive, to be on the road to recovery, so we don’t say how we’re feeling: “Don’t tell people you’re sad, you’re not dead”; “Don’t mope around, there’s always someone worse off.” And we’d be right, but we’d also be wrong. We’d be fools in deceiving ourselves because there are no winners or rules in this game, only time.

I chose to forgive myself that day. To be remembered for my crooked laugh or the way I arch my back when someone kisses my cheek, for all the things that bring me joy when the world is too busy marching forward. Maybe I am naive to say this, maybe I expect resolutions because I am young, but I want a life that satisfies me; I will tell myself what I need to so I can understand it better.

So, where do you go when you’re not sure how to start? There are multiple resources, forums, groups, healthcare professionals and even products that know the difference between feeling good and feeling great, which is why they make it their mission to do it every day.

For younger patients, CANTEEN is a great resource; for older patients, Survivornet. For those looking for greater guidance, talk to your healthcare professional. It really is true: they’ve heard everything. Bringing you pleasure isn’t the worst of them, even if it’s just telling someone about it.

I bought a vibrator, because I don’t always want to grab life by the balls but a pink magic wand sounds just as good.

I chose to have these conversations with people around me. I read about others’ experiences to better understand my own. I researched brands and resources that provide patients (with all body types, treatment and experiences) the tools they need to enjoy their life alone or with someone, and I bought a vibrator, because I don’t always want to grab life by the balls but a pink magic wand sounds just as good. Maybe even better. And I thanked my doctors and nurses, who told me from the beginning this was part of the process, even if at the time I wasn’t paying any attention to it.

If I could spill everything I felt onto more pages, I would, but there are some things I like to keep for myself. If there’s something I know for certain, it’s that there are no guarantees in life and yet somehow, everything comes full circle.

If you or a loved one have found yourself in a similar experience, please contact your healthcare professional.

Anna is a writer and creative from Melbourne, Australia who sees jumpsuits and Ariana Grande in the same vein: necessary for her existence. She usually has her head in the the clouds and her 9-5 at beauty company, frank body where she writes, thinks and creates. In her spare time she writes words for people brands like this and people like you.

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