Melanoma by the Numbers
August 26, 2016 – Jen Sotham
Cancer Survivor Identity Crisis: I Am More Than My Cancer(s)
August 25, 2016 – Barbara Tako
AFIB: Could It Be Caused by Something Besides Chemotherapy?
August 25, 2016 – Edward McClain
Releasing the Stress and Cancer Issues in Our Tissues
August 25, 2016 – Stacie Chevrier
Proactive or Reactive Cancer Treatment (Part 2)
August 24, 2016
Rise Up: 4 Life Lessons From a Cancer Survivor
August 24, 2016 – Kate Beland
What Do You Do When Your Oncologist Says Your Treatment Is Done
August 23, 2016 – Dana Stewart
Caregiving: The Importance of Self-Care
August 23, 2016 – Kim Johnson
The Five-Year Survival Rate for Cancer
August 22, 2016 – Khevin Barnes
The Strange World of Metastatic Breast Cancer
August 22, 2016 – Martha Carlson

The Language of Helping a Loved One With Cancer

Someone who has never experienced cancer may feel apprehensive about how to talk to someone who has been diagnosed. Here are my two cents about communicating with a cancer patient.
PUBLISHED August 09, 2016
Jen Sotham is a freelance journalist and screenwriter/director. She was working as a university professor in Busan, South Korea, where she lived for almost a decade, when she was diagnosed with metastatic melanoma in 2014. Still doing battle with the beast, Jen has since returned to New York, where she has been using her voice to share her story through film, essays and her blog, jenvscancer.wordpress.com
Since my diagnosis, I've gotten hundreds of amazing messages from people near and far, from people with whom I have extremely close bonds to some I haven't seen or spoken to since childhood, all offering their own brand of love, support and encouragement. I've read each of these messages with an open heart and mind and, most importantly, with gratitude. This outpouring has been one of the beautiful things that has come out of having this very ugly disease.

One of my favorite messages that I received was from my dear friend, Nat, who was writing from across the pond. She wrote: 

"At some point I'd love to talk, if and when you get a chance. Mostly just so you know that I'm here, even if I'm not there. This is going to sound like a big favour, but if there is any way that you need me to deal with this (ie: super positive, realistic, plain old shutting up) then let me know. I really just want the chance to support you and give you the support that you need, not what I think is best. Because I love you and stuff, and also because I feel powerless and want to do anything I can. I also know that it's massively selfish of me to ask you to tell me what to do/how to act, but it comes from a genuine desire to give you what you need/want rather than hurting you or being counter productive to the process you need to work through. Also I love you, which I know I said, but it can't hurt to say it lots. xoxoxo"

Though we (people living with cancer) may all be battling a common enemy, all of us live in fortresses built of different materials, and we all have different defense strategies and different weapons in our arsenals. As such, the “dos and don'ts” in this post are not meant to presume that all people with cancer have the same needs. They are simply my proper response to the above message. They’re guidelines drawn from my own needs, from teaching communication skills and from what I've absorbed from the collective conversation I've had with others dealing with illnesses.

Some advice on giving advice:

Really, it's the good part of our natures from which advice-giving stems. When someone is sick, the desire of people around them to help kicks up about a million notches, and everyone wants to supply useful information: an article about that awesome new drug, contact information for a long-time survivor with a similar diagnosis, the most updated list of cancer-fighting superfoods. Here's the thing, in the weeks/months following initial diagnosis, there is SO MUCH new information that we need to wrap our brains around. It's like being forced to go back to school for both a major and a minor in life redesign. Attendance is not optional. Very quickly, we become experts on our illnesses. This is not to say that the supplemental material isn't welcome. It is. Send it along, but just don't be offended if I don't start taking mushroom extract pills.

If (when) you do offer advice, here are a few linguistic considerations. Avoid the phrase, "You should ..." When someone opens a sentence with these words, my inner teenager takes over. She automatically starts rolling her eyes; her ears start paying attention to peripheral sounds. And then I miss the potentially valuable thing that followed those words.

Another phrase I'm not a fan of is, “Have you considered ...?” Yup. I have stage 4 cancer. I have considered everything and anything. I've even considered letting a shaman shove crystals up my ass. Try, instead, to offer up advice framed by question, "What do you think of/How do you feel about…" I'm happy to share my perspective and learn about yours. If you introduce an idea or resource that I'm unfamiliar with, I'll ask you to tell me more.

The difference between sympathy and pity:

Under normal circumstances, when we ask the question, "How are you doing?" the emphasis is on the word “how.” When people ask the same question to someone going through a difficult time, we place emphasis on the “do” in “doing.” Try saying them both out loud. See the difference? A lot of people with cancer talk about “pity eyes.” Well, there's also pity voice to contend with.

As I've learned since my diagnosis, there's a huge difference between sympathy and pity. I WANT people to sympathize. Cancer sucks a fat one, and I'm grateful when people acknowledge that. But the idea of being pitied makes my skin crawl, to the point where I think my next blog post might just be about how much I hate the idea of being pitied.

I can't offer many suggestions on how to harness sympathy rather than pity in vocal inflections and facial expressions. It's just something to be aware of. I can, however, share the difference in how they feel. The best way I can describe it is this: Think of cancer as a glass bubble. Pity feels like someone is standing outside the bubble, offering me a smile and a sad wave. Sympathy feels like someone is letting themselves into the bubble to give me a hug.

I don't expect you to be a mind reader or a nurse.

"You must feel like crap."
No, actually, I feel good today, and I want to embrace it.

"You must be so angry."
Nope. I am sad and terrified at the moment.

"You must be super excited about your good scan results."
Yeah, I'm relieved that the scans reflect progress. Like, reaaaaalllly relieved. But super excited? That I still have cancer? Not really.

Although all of these statements are likely said with the best of intentions, if they're off the mark, they can be frustrating, and sometimes even confusing. It makes me think, Wait. Is that how I'm supposed to feel? My emotions are all over the map. I can go from over the moon joy to almost catatonic numbness in seven seconds flat. A simple, "How do you feel right today/right now?" can go a long way in accommodating my emotional roller coaster.

As for trying to read my physical cues, don't. It makes me feel like a science experiment. My mom is a big culprit of this. I get it, she's my mom and she's worried, but it can still be bothersome.

I furrow my brow. "Do you have a headache?"  “No, Mom, I'm thinking.”

I blow my nose. "Do you have a cold?"  “Nope, just some excess snot.”

I roll my neck. "Joint pain?"  “Uh-uh. Just slept funny on account of my 80-pound dog taking up most of the bed.”

If I feel sick, I'll let you know. Or maybe I won't, and instead I'll just call my doctor. With physical symptoms, there's really nothing you can do to help and I don't want to make you feel bad. Unless, of course, you want to give me a foot massage. I'll always take a foot massage.

I'm still me, and I'm still here for you.

I can't count the number of times since my diagnosis that some close friend or family member started complaining about some issue and stopped him or herself mi-sentence, their face awash with guilt, and apologized with something to the tune of, "Of course it's nothing compared to what you're going through." It's not nothing and it's not, nor should it be, comparable. Problems are relative. A bad break-up isn't cancer, but it still sucks. And if it's the biggest problem in your life, then it's huge. If you're someone I love, who would normally turn to me to help you process something, then don't let the fact that I'm sick stop you from turning to me. That just deprives me of the opportunity to be a good friend. To be perfectly honest, hashing out other people's problems can be a welcome distraction from my own sorry state.

On the same token, don't refrain from sharing your joys, successes, awesome weekend plans or funny stories with me in fear that you might be “rubbing it in.” I don't want to be excluded. I want to laugh with (and at) my peeps. Please still invite and include me. I promise I'll show up if I can. That said, don't be mad at me when I flake out on plans, even big events and even if I seem healthy. Living with cancer means that every day brings potential for a new hurdle. Many of these hurdles are beyond blind curves and invisible to the untrained eye. If I flake, it's because I'm busy jumping.

I don't want to always look on the bright side.

I am a firm believer that positive thoughts have healing properties. I know that the people who love me desperately want to wrap me in a positivity cocoon. I spend about 70 percent of my time being genuinely happy. I am alive and, aside from the cancer bullshit, my life is a pretty happy place. For about 25 percent of my time, I'm feeling meh, but putting on my game face and crying myself to sleep when I need to. When I'm in that other 5 percent, and I share my deepest, darkest with my nearest, dearest, I just want the shitty-ness of this all to lay there, undisturbed, being shitty.

God, et al.

I was going to write a little section here about being sensitive to the beliefs and values of the person with the illness before asserting your own, about not using phrases like, “It's part of God's plan” or “God works in mysterious ways.” But here, it's really me who needs to be sensitive. The people who love me, who are scared shitless that I'm going to die, and who happen to be religious, are turning to their version of God right now for their own comfort, assurance and peace of mind. And you know what, although I'm not religious, the hundreds of messages and comments I've received that offer me prayers have been very comforting. I might not pray, myself, but if you do, and you believe it will help, then pray away!

The moral of the story is...

I recently read a draft of this post to a close friend. Later that night, she did one of the exact things I wrote not to do. She caught herself and apologized profusely and I felt awful. Especially because I, myself, had been unaware of it. It was simply a natural part of our interaction. All that I've written above is the very long, overthinky answer to Natalie's query. The short answer, and what I responded to Nat at the time, is this: Just be you, and treat me like me. 
Continue the conversation on CURE’s forum. >>
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.

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