It’s trite to say that a cancer diagnosis forever changes your life. A cancer diagnosis affects and shifts and disrupts life in so many different ways I could write a novel on that alone. Some changes are obvious and immediately clear (Yeah, I’m missing a body part and I’m bald. Boo), some may not manifest for a long time (Wait, what do you mean the chemo might have damaged my heart?), and some can take years to come to grips with (Yep. Working on this. Daily). One of the worst things about a cancer diagnosis is the immediate loss of control. You don’t have a choice. When the Cancer Train screeches to a halt to pick you up, you get on. When the white-coated conductor with a stethoscope and syringe escorts you to your very personal seat, you sit down. Even in remission, the Cancer Train chugs along, its cars filled with doctor appointments and tests and the never-evaporated fear.
The worst train stop is Cancer Town. Here you live while undergoing treatment. Doctors, nurses, hospitals, specialists, surgeries, radiation, chemo… these are some of the day-to-day denizens and aspects of life in Cancer Town. The changing reflection in your mirror is your security badge for this gated community. Maybe you derive comfort in Cancer Town, maybe you rabidly hate it, or most likely, you feel a mixture of both. But you don’t have a choice about living there. Mercifully, many people only lease in Cancer Town. Once active treatment concludes, they can pack up their belongings and catch the Cancer Train to the next stop, and hope for a more “normal” life.
If you’re fortunate enough to be in remission, your choices expand and you do have the choice about visiting, about remaining really attached, to Cancer Town. Connections come in many forms: physical support groups, online groups and chat rooms, continued closeness with your treatment facility or relationships with women you were lucky to bond with at the chemo lounge. You can also continue to keep current vis-à-vis medical information, maybe even attend cancer conferences, lectures, and webinars.
Staying connected has enormous benefits. I was incredibly alone through all my active treatment. My initial surgeries were in upstate NY where I didn’t have a team of doctors or a young support group to draw forth strength and comfort. (Even the nursing social worker I was “assigned to” forgot about me. She called me after I moved back to Philadelphia to apologize that I dropped off her radar.) My chemo was in Philly, but I didn’t meet anyone in the chemo lounge; indeed, I was always the youngest person there, which further depressed me. About a year after diagnosis, I attended a cancer conference and was delighted to hook up with a group of young survivors.
What a relief! A whole group of young women who knew exactly what I had gone through and what I was still going through. Fantastic! Attending meetings could be a double-edged sword; sometimes I left feeling worse and even more anxious, sometimes I left feeling better. The anxiety-provoking moments happened when women shared experiences that I could have (Oh my God, I didn’t even know that could happen!!), tests that I wasn’t having (Why am I not having those scans??), treatment options that I didn’t choose (Did I make the wrong choice??), and side effects that I didn’t suffer (Does that mean the meds aren’t working????) It was enough to make my head explode!
But overall, those meetings were invaluable, and now that I live in NYC, I really miss those amazing women! Although I may not “know” many of them outside of the support group, our shared experiences during treatment and perhaps more important, now, as we continue to deal with cancer fall out, mean so much. The simplest sentiment is clichéd but true: “They just get it.”
I’m also connected with a large group of young BC survivors via a FB group. It’s a great forum. Women at all stages in their treatment and their lives throw out questions, offer advice, share resources, and give unconditional support. The word awesome pretty much covers it. I will probably never physically meet most of these women, but the existence of this group is like my very own fuzzy security blanket.
But as anyone who is out of treatment knows, keeping close ties to Cancer Town come with a price. Women you know (personally or just online) face further hardships and crises. Cancer comes back. Medical emergencies happen. And women die. Choosing to remain in Cancer Town can amplify personal fears and concerns that otherwise might fade without the constant reminders.
I only attended my support group for a little less than a year, but by the time the full-year mark hit, two of the women I had peripherally met at group meetings or activities had died, one at 26 and the other at 40. Seeing that kind of information pop up in my Facebook feed was a gut punch even if I barely knew them. My initial reaction was sadness and rage at the really shitty hand these women were dealt. My second wave of feeling occurred almost simultaneously: those women could be me. I could be them.
The online forum runs the same risks. Shared community and knowledge is beneficial, but the cancer fears can remain fresh and omnipresent. I know when women have recurrences or their cancer has metastasized, or when someone dies. A strong and accepting mind is required to not feel anxious or frankly, freak out. I’m not great at it. My stomach flip flops every time someone posts a new, horrifying medical diagnosis. I’m upset for the person, but it’s no surprise that I feel anxious and project onto myself.
But I choose to be there, in Cancer Town. I choose to be connected. I choose to write a blog once a month, to share, to talk about the cancer experience. Some people justifiably don’t want, or can’t, stay connected. This cocoon of self-preservation holds strong appeal. My anxious, overactive mind is my greatest enemy. I fully understand and respect wanting to cut the ties to Cancer Town.
Because it’s damn scary. To hear that someone’s cancer has come back scares the Crap out of me. It’s not just an emotional fear; it can also be a physical one (Panic attacks suck). Maybe it would be easier for me to shut it out and join what I consider the media’s pink wagon of happy survivors who scarcely mention those of us who do not thrive or survive. But I feel strongly that women who are suffering with progressive disease need to be recognized and supported and valued even though thinking about Mets might bring me some distress, discomfort, or okay, scare the living daylights out of me. (To even give voice to these trivial effects on me is embarrassing.) Attention must be paid to these women. Their struggles must be recognized. Our sisters with progressive disease no longer have a choice…. they have permanent housing in Cancer Town.
So I choose to keep an apartment in Cancer Town. A rental only, if you please. For me, the benefits of community and sisterhood and support outweigh the fears and anxiety.
Jennifer Jaye is an editor, writer, actress, yogini, former karate instructor, and in her newest role, a cancer survivor. She lives, works, and plays in New York City as she attempts to navigate life as a young survivor of breast cancer.