Originally published on RebelleSociety.com
May 15th, 2013
Bummer. Sounds like you have to talk to someone with cancer.
I’m so sorry – for you both! After all, it’s no easy task for either party. Going through this very thing myself, I’d like to help you out with a little cancer context, so that we can put your inevitable dialogue into your loved one’s perspective.
The thing about people living with cancer, is that we are a complicated bunch.
Our senses have been rubbed raw by diagnostic testing and medical evaluations. We’ve been graded, staged and given projected survival rates. We’ve seen the fragility of our lives held up before our own faces, and we come away from our treatments feeling vulnerable in a way we’ve never felt before. We cling to our independence, but know we’re dependent on others for healing and help.
We are emotionally taxed and psychically drained.
The very nature of our dis-ease has thrown us into a world off-balance. Not only are our bodies working over-time to halt the production of alien-like rapidly mutating cells, they are struggling to process the toxic poisons we voluntarily ingest to cure ourselves. The very treatments we implement to make us healthy, make us sick. We walk a ﬁne, contradictory line on a daily, weekly or monthly basis.
Cancer survivors know better than most how ﬂeeting life can be.
We live with a foreboding and heavy awareness of risk. We are almost painfully aware that each day we have is precious.While certainly there are many silver linings, we remember wistfully what our lives were like Before Cancer, before the silver linings needed to be pointed out. We navigate the remainder of our days knowing that we will never again feel the pre-cancerous freedom we may have taken for granted.
“Toleration is the greatest gift of the mind; it requires the same effort of the brain that takes to balance oneself on a bicycle.” ~ Helen Keller
We know it’s a tall order, and that our needs are inconsistent, but we really appreciate your patience as we ﬁgure out exactly what we need. We want you to be sympathetic, but we don’t want your pity. We want you to look us in the eye, but please don’t stare. We’d like it if you could meet us where we are, not judge us for where you think we should be. We want you to reassure us that we are capable and brave, but don’t blow smoke up our asses; being the authority on ourselves, we know we’ve looked better, felt better, or seemed more grounded.
We’d like it if you lent us a compliment or even two, but for heaven’s sake, please don’t go over board. Sure, Bald is Beautiful, but given the choice, most of us liked ourselves just ﬁne with hair.
We still want to be loved, and by that I mean made love to. Those of us withbreast cancer and facing mastectomy could be on the brink of loosing the very largest symbols of our sexuality and femininity. If in the face of buzz-kill cancer, we can muster up enough energy to jump in the sack, please do whatever you can to rise to the occasion.
We might complain all day long about not feeling pretty but at night we’d like to be pursued as if we were the most beautiful women you’ve ever seen. We might ask you to turn off the light, just go with the ﬂow.
Shower us with empathy.
Compassion is a prized commodity amongst our kind. It’s better that chocolate, red wine, or our anti-nausea medication. A single empathetic commiseration that indeed things can suck may be more appreciated than any other grand gesture of affection you can bestow us. It’ll certainly go over better than the knee-jerk condolences you might be tempted to offer up.
The truth is, no matter how above it we may project ourselves to be, we are embarrassed by our vanity. Even those of us who walk a path spiritually devoted to cultivating an awareness deeper than the skin, know real and intense discomfort when our physical identity starts to fall apart.
We may attempt to take control of our hair loss by cutting it short, or shaving it off. We may throw ourselves a Boobvoyage party before a mastectomy or parade around with our newly bald head held high. BUT we are actively engaged in the most difﬁcult task of accepting that we are completely and utterly out of control.
This week I’m grappling with something I ﬁnd simply humiliating. As if it weren’t bad enough that my hair has fallen out only in patches, to add insult to injury I now have something called folliculitis, a bacterial infection of the hair follicles, not only on my scalp, but also in the soft downy follicles on my neck and all the way down the small of my back. It is nearly impossible to feel sexy when touching your own head gives you the heebie-jeebies.
For all the cancer patients out there who have experience this particular itchy, hot, and unﬂattering torture, I bow to you. It takes a formidable person to rock this particular look without tears. And to those of you, who like me, have wanted to hide far from society in the seclusion of your own homes, or in the very least under a hat, I feel you. I know the last thing in the world you want to hear is how beautiful you look, when you feel like shit.
We know that you know we are strong, but don’t you know we don’t always feel that way? Do you know how hard it is for us to be brave when our hair is falling out and our bones are itching? Do you know there are days we don’t feel graceful, moments we don’t act graceful and times we fail to live up to our own graceful expectations? It is hard for us to feel empowered with an icepack on our head and a heating pad on our knees, dry red eyes and a rashes lashed across our skin.
Sometimes we feel bad.
We don’t envy you: those of you who run into us at the grocery store, or the coffee shop on one of our bad days. We know it’s awkward to hear us panicking on our cells phones with our mothers, or crying to our husbands. But please don’t walk away and pretend that you didn’t hear. Chances are in a moment like that, we need your help and we might be too proud to ask.
Forget attempting to offer up some gratitude platitude (we are more grateful for the chance to keep living than most), just give us a silent squeeze. One hand on the shoulder is worth a million well crafted aphorisms. Most likely, we will hug you back with all our strength; perceived or projected.
We want you to see us. To see our strength and our vulnerability. To feel our pain and to know the depths of our gratitude. Ask us sincerely how it is, and we will tell you the truth.
“There is no difﬁculty that enough love will not conquer; no disease that enough love will not heal; no door that enough love will not open; no gulf that enough love will not bridge; no wall that enough love will not throw down; no sin that enough love will not redeem…” ~ Emmet Fox
Here are a few more things to keep in mind when you talk to someone with cancer:
1. If you know about our disease, address it immediately. Chances are we already know you had dinner with a friend of a friend the night before last and they told you all about it, so get it off your chest. Waiting for us to tell you how we are puts us in the awkward role of feeling like we’re complaining; usually things could be better, but if you’re curious about how we feel, just ask.
2. If you’re not prepared for some detailed response to your inquiry, just don’t ask. We may need to vent about some gnarly side-effect, and most of them are kind of yuckie. Be prepared to listen. Your shoulder to cry on might be the biggest boon we get all day.
3. Please refrain, if possible, from telling us a story about your friends and relatives who died of cancer. Just like a pregnant women gearing up to deliver her baby, it’s important that we surround ourselves with stories of success not fatality. If you haven’t experienced cancer ﬁrst hand it is normal to want to relate in any way possible, but for our sake think twice before sharing a story with a bad ending.
4. Unsolicited advice might be great, but it’s still unsolicited. You might just have the most miraculous outside-the-box alternative therapy that you’re dying to put to the test, but please, unless we’ve asked, soften your enthusiasm. No one takes their diagnosis more seriously than the patent themselves. Most cancer survivors I know have thought long and hard about their treatment plans. They’ve often consulted their nearest and dearest and have gotten a second and third opinion. And by the time we are in active treatment we have a pretty solid plan of attack in place.
5. Empathy, empathy, empathy. Plain and simple, cancer sucks. If anyone wants to talk about how it’s a gift, leave that to the patient to offer up.
6. Shower us with love. According to the mother of Western yoga, Judith Lasater, all emotions stem from the two most basic: Fear and Love. We, cancer patients, are confronting our fears in a full frontal attack. Showering us with love is like helping us stock up our arsenals and helps us prepare for battle.
7. Lighten Up. The more you can make us laugh, the better. This is not to say we don’t appreciate you taking our challenges seriously, but let’s face it, laughter is the best medicine. If you can ﬁnd a way to make us giggle we will love you forever.
I am lucky enough to have some of the best and silliest girlfriends in the world. When three of them came to visit me last month we took over the infusion room at the Nantucket Cottage Hospital. When Gretchen, my infusion nurse, slipped out to go to the lab, the girls promptly took over and we turned Cancerland into Clubland.
9. Touch us. Cancer is not contagious. We can’t give it to you. What we can give you is the chance to heal our aching hearts. Most of us just want to be held.