Tuesday, April 29, 2014

Visiting hours: or, how to call on the cancer warrior

7 Rules You Should Follow When Visiting Someone With Cancer


At the stroke of midnight, 01 January, 2014, US Census Bureau statistics tell us that the population of the USA was 317,297,938. The American Cancer Society tells us that in the year 2014, 16 million out of those 317 million people will be diagnosed with cancer.

Half of all men will get cancer during their lifetimes
One-third of all women will get cancer
Three-quarters of all cancers strike after age 55
Fourteen million people are living with cancer; as survivors or current fighters
1500 people die from cancer every day
600,000 lives are lost every year

My brother Michael lost his life his life in 2012 to oral squamous cell carcinoma. Me, I’m one of the fourteen million survivors.

The numbers are clear. At some point in your life, you will want to visit a friend or loved one with cancer. It is scary as Hell. What to say? What to do? How do I help? We want to help, but we don’t know how. What are the rules for a visit with a cancer warrior?

My Seven Rules for Calling on the Cancer Warrior

1) Make absolutely, positively, 100% certain you are healthy.

Whether from the chemo, the stress of the illness, or their cancer itself, many cancer patients have compromised immune systems. A little bug or a sniffle that might put you a bit under the weather could have serious repercussions for the health of a cancer patient. Even without your bug raising serious problems, a cancer patient already feels lousy enough. Keep your sniffle-ly nose to yourself. If your kid stayed home sick yesterday because of some norovirus, stay home.

i) Wear clean clothes. Your favorite sweater, the one a little kid goobered on yesterday in the queue at McDonald’s whilst you weren’t looking, might still harbor some Klebsiella or H. Influenzae.

ii) Wash in. Wash out. When you enter the house, wash your hands properly with soap and running water for 30 seconds-that’s singing Happy Birthday through twice. Or use hand sanitizer. Wash them again on your way out. It’s a good practice.

2) Make contact in advance.

My brother and I were as close as brothers can be. Yet, when he was deep in his cancer fight, I never dropped by. One, it’s just rude. Two, you never know what kind of day your friend is having. Michael really liked to make those contacts via text message. To a cancer patient, a ringing phone, when your pain and discomfort have just settled down enough so you can nap, is a huge and unwanted intrusion.Send a text. You might not get an answer. Don’t drop by ‘just to see if everything is all right.’ Most likely, your friend is getting some sleep.

Cancer, and cancer treatment, are exhausting beyond words. How exhausting? Picture yourself as you lie on the couch with your face turned towards the seat cushions. You hear something interesting on the TV. Now, try and imagine that you lack the energy to turn your head towards the TV to see what is on. Yep. That bad. Sometimes worse.

3) Time limit your visit.

When you text to see if there is a good time to visit, give a limit.
“Michael, is there a good time today or tomorrow for me to stop by for a twenty minute visit?”
When those twenty minutes are up, get up and go. If your friend wants you to stay longer, s/he’ll let you know.
Even when we have cancer, when someone visits our home, we feel as if we are the host. Just to burn the mental energy required to be “the host” is a huge drain on very limited psychological resources.

4) Contact the caregiver about gifts.

Before you bring anything with you, contact the patient’s caregiver. Radiation and chemotherapy play havoc with the senses. What to you is a lovely scented bouquet of flowers might kick off three hours of retching and vomiting for your friend. In addition, many people become highly sensitive to pollen during treatment. A plant might be nice. But ask.

We like to feed our friends and family when times are tough. Ask if there is anything special you could bring, and anything specific you should avoid. Just because your friend liked your lasagna two months ago, the smell of the tomatoes and basil might send her reaching for the waste bucket.

When Michael was ill, I brought him DVDs. He was a huge baseball and Detroit Tigers fan, so I brought him highlight DVDs from the Tigers amazing 1968 season. We were little kids then, just starting to fall in love with sports and our heroes. I also brought him Rocky and Bullwinkle videos. Mindlessly funny stuff. Norman Cousins, in his great book, Anatomy of an Illness, wrote at length how the Marx Brothers, Laurel and Hardy, and the other great comedians of his youth helped him heal during his bouts with ankylosing spondylitis.

“I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep,” he reported. “When the pain-killing effect of the laughter wore off, we would switch on the motion picture projector again and not infrequently, it would lead to another pain-free interval.”

5) Avoid forced optimism.

Don’t be a cheerleader.
“You’re going to be fine. I just know it.”
“Bullshit,” says the patient. “I might freakin’ die. That’s why they’re bolting my head to that goddam table and irradiating my skull. That’s why my body is slowly being carved to pieces. That’s why I get bags of ugly yellow chemicals pumped into my body. You don’t know shit about my illness. I’m laying here, feeling like if I blink 2% too hard, my eyeball is going to fall out of my face, and if I swallow without thinking on it first, I’m going to be curled up in a ball in the bathroom for the next two hours heaving my guts out, while I try not to have shit come pouring out my asshole, and you’re sitting there telling me ‘You’re going to be fine. I just know it?’ ”

“What the fuck do you know? Get the fuck out of here. Jesus, you fucking idiot!”

Don’t play pity poker. Don’t tell a story about your cousin who’s a cancer survivor. Fact is, in the midst of my cancer, I don’t care. I’ve got my own problems right here, thankyouverymuch. When I was struggling with my melanoma, I found inspiration in an older friend who was fighting a much worse case of esophageal cancer. As cancer fighters and survivors, we’re good at finding our own inspiration. Hang out with me, that’s all I ask.

6) Physical contact. Ask first.

Cancer hurts. Sometimes, the pain cannot be imagined. Sometimes, a hug can be agony. Sometimes, you need a hug, a bit of human warmth and contact to remind you that you’re not alone. So ask before you hug. Pro-tip: Use your friend’s hug as your guide. As I was leaving my brother’s house, I’d always ask Michael if we could hug. When he said yes, I’d let him move towards me, and as firmly as he hugged me, I’d hug back, but just a bit softer. If you opt for a hand-squeeze, be just as gentle. Hard to believe, but some cancers cause such deep-seated bone pain that even a too-firm yet loving squeeze of the hand is agony.
What Should You Do?

7) Be there now.

Ram Dass titled his seminal 1971 work Be Here Now. When you are with a cancer fighter, be there. Turn off your damn phone. Your twitter feed can wait. If your friend wants to talk; Talk. With. Them. Listen, really listen, to what they’re saying. They’re talking with their eyes, and body language, as well as their words. Pay some fucking attention. They want to watch a little TV with you, then watch some TV. If they want to lie back for a few minutes and take six or eight deep breaths, why don’t you join them? Lower your shoulders from up around your ears, relax a moment, and join them in several deep quiet breaths.

You do realize, don’t you, that you too, are stressed? You do realize that your angst fills the room? It is hard to watch someone suffer, someone in fear, someone in pain. Let your heart fill with compassion, not pity, and join with them in your heart for a few moments. Don’t share your heartache. Let go of your pain and watch them relax along with you.

In the Torah, Jews are commanded to perform acts of lovingkindness. Buddha says “He who attends on the sick attends on me.” In the Christian Bible, Jesus commands his followers to care for the infirm. The atheist cares for the sick because there is no greater service to humanity than to care for the sick.
Be gentle. Be kind. Be compassionate. Be there now.

Blogger's note. These are things I might not have thought about myself. In fact, I know I wouldn't. We're taught that we must be "positive" at all times, no matter how lousy we feel. If we're not "positive", we're indulging in self-pity. It's just assumed flowers will cheer the person up, when they might hate flowers or find them an irritant. And the hug - I never would have thought about that, but yes. Make the hug extremely gentle, put your hand lightly on his or her forearm  - or just ask before you touch them at all, because they might not feel like it. 

Someone I love, someone who has been part of the family for forty years,  is facing treatment, and many times a day I think about her because the disease is at Stage 4. We're far apart geographically, and right now constant inquiries are not practical or even desirable. The relentless and anxious "how is she?" puts pressure on the family to provide some statement of "improvement", if not physical, then spiritual.

 I once knew an incredibly brave woman facing terminal brain cancer. What she said to me was astonishing: "I don't know how to comfort people." No one wanted to accept what she was saying, they argued with it, they became distressed and full of denial and even anger that she should say such a thing. They even admonished her that she should have the surgery that she knew would not improve the quality of the life she had left. Another reaction is the low moan ("stage fo-o-u-r- r-. . . "), the utterance of dread. Patients and their families don't need the added burden of your hangups about mortality.

It's an ugly fact that a large part of your normal support system might fall away. I've had the big turnaway too, from a disability that some people (though I know it's hard to believe) dread even more than cancer. Then you learn that the old cliche is true: in a major crisis, you find out who your real friends are. And though this piece is extremely helplful and brings up issues most people never even think about, I've had a few thoughts about it.

I have to believe that it's OK to go in there and make a mistake. The "seven rules" are difficult, and if you think you have to apply them all, all at the same time, without a slip-up, you probably won't visit at all. It will just be too hard and you will be too afraid of doing damage. But I believe that someone in deep trouble can usually see the profound concern and love under all the slipping and sliding, the clumsy pratfalls of good intentions.

In all my life, I have found one good listener. One. One who listened so deeply and profoundly that you knew you were heard, who in fact heard things you didn't even know you were saying. Moreover, he was a vault. You didn't even have to ask. When he came to visit me in a place no one else wanted to go, I was reminded of the Bible verse, "For I was hungry and you fed me. . . " I was stigmatized and scorned, I had "fallen" and felt that I had failed massively, and he was there. He sat and looked at me and nodded his head and the listening was like a hum that came from him.

Maybe I'll only find one of these in my entire life, and it's a gift that I did. And it wasn't cancer, it was something else, but believe me when I say it came perilously close to killing me. But his rare gift is a valuable lesson for the rest of us: shut up for a minute, stop trying to fix it so you will feel better, and make yourself open to the pain. You'll walk out of there upright, it won't kill you, and maybe you'll even be able to come back. 

(P. S. to the P. S. A point I've made before, but I will keep on making it until something changes. I remember, not so long ago, that a person who had cancer was always called a "cancer victim". It was used in the media all the time, and not just for the terminally ill (another term I do not like). I also used to hear "AIDS victim" in the '80s. At some point, mercifully, the tide turned, and now it's (rightly) offensive to speak of victimhood. All except in one area. Mental illness always appears juxtaposed with the term "stigma," and it's about as helpful and unstigmatizing as telling someone, "You're NOT really fat, not fat at all, no, fatness does not begin to describe you who are NOT fat, so why do you think you are fat when you are definitely NOT fat?"  So it's stigma/mental illness, stigma/mental illness, stigma/mental illness, etc. etc. etc.

Very seldom have I seen "mental health warrior", but I like it. I like the term "mental HEALTH" because it implies that people with bipolar and schizophrenia can actually - gasp, choke - be "well". "Mental illness" is kind of like saying "cancer illness". How can you be ill and well at the same time? You can't. You're stuck in it forever.

See, it matters, the way we refer to things. Using the term "cancer warrior" won't make it all go away, but it will help in restoring dignity and personal power, and dispelling the fear that keeps people ignorant.

There was a time when cancer was so stigmatized that the word "stigma" wasn't even used to describe it - it was too stigmatized to even mention. The word was never said. We have come a long way. Now can we PLEASE do something to fucking get RID of "mental illness/stigma/stigma/stigma", once and for all!

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