Things to say (and not to say) to a cancer patient.

When people hear that I have cancer they often say, “I don’t know what to say.” Acknowledging you’re at a loss is a fine response. It’s what you say, or don’t say, after that that gets tricky.

For example, some people know instinctively that the best thing after that is to just be quiet and listen. Then, take a clue from the person you’re talking with. If the person is angry, be angry with the person; if the person wants to laugh, laugh along. [picapp align=”left” wrap=”true” link=”term=death&iid=7310962″ src=”e/4/7/f/Hetty_Sorrel_sentenced_9d5e.jpg?adImageId=8440900&imageId=7310962″ width=”234″ height=”354″ /]As the Bible says, “Rejoice with those who rejoice; mourn with those who mourn.” (Romans 12:15). If the person doesn’t want to talk about it, don’t prod. Wait until the person is ready to talk, and that might be never, especially if you’re not a close friend or family. Prodding for information is like ripping off a bandage to see someone’s surgery scar. Leave it alone until the person is ready to talk.

Others think they have to say something to “fix” the situation. That’s usually a mistake. If the doctors can’t fix it, why do you think you can?

So, what you should say is fairly straightforward and simple and often involves complete silence. Most of the things you shouldn’t say are in the prodding and fixit categories. I have a lot of them I’ve collected on my own and from others.

Disclaimer: I’ve said many of these to people before I got cancer and a clue, so if you see yourself somewhere in here please know that I see myself too and I don’t hold it against you.

[picapp align=”left” wrap=”true” link=”term=intravenous&iid=179319″ src=”0175/fb56cf7c-695e-4401-a23e-c78774747981.jpg?adImageId=8442061&imageId=179319″ width=”234″ height=”351″ /]Foot in the mouth from the infusion center

You can say stupid things to other cancer patients even if you’re a cancer patient yourself. A few weeks ago the lady next to me in the chemo room (infusion center, torture chamber, or whatever you want to call it) tried to strike up a conversation by saying in a cheerful voice, “What kind do you have?” She asked in the same voice you would ask a child what flavor his ice cream cone happened to be. Snort. Honestly, we all have cancer in here, lady. What does it matter what flavor it is? I bet this lady is annoying on airplanes also; she probably talks about plane crashes when she flies.

“Nobody dies of breast cancer”

When I was first diagnosed with cancer five years ago, someone at work stopped me in the hall and asked me about my diagnosis. “Oh,” she said, “Breast cancer. Nobody dies of that anymore.”

I think the toll of friends I’d lost to breast cancer was up to two at that time. I didn’t like to think of them as nobodies. Further, the truth about breast cancer is that 30 to 40 percent of the time it returns and when it returns it is Stage IV and considered terminal. Also, the five-year mark is meaningless with breast cancer. I know people who’ve had their breast cancer return 25 or 30 years later.

The truth about breast cancer is that you don’t know if you’ll die of it until something else kills you. It’s among the most unpredictable of cancers.

Anything about bravery or heroism

A friend of mine was diagnosed with cancer. When she told a close friend, the friend’s immediate response was “You’re my hero.” My friend said she’ll never forget that or her astonishment at how stupid that statement really was.

Along those lines, my latest pet peeve is the people who keep calling me “brave.” Ha! Brave would be stepping out in front of a car to rescue someone. Brave is when you have a choice. My only choice is to go through crappy treatments or jump off a building. How is that brave?

Anything about appearance, feelings, or bodily functions

I’m going to go Emily Post on you now. USE YOUR MANNERS, for heaven’s sake. Why does a cancer diagnosis open me to personal comments from people I barely know? If you wouldn’t say something to someone you know isn’t sick, then don’t say it to me.

Here are some examples.

“What’s under that hat?” I know you’re asking if I am bald and if I have cancer. If you don’t know me, it’s none of your business. My answer is “I have a head under my hat.”

[picapp align=”right” wrap=”true” link=”term=razor&iid=168095″ src=”0164/1fda5a29-b217-4d01-b17e-6205d770d64d.jpg?adImageId=8441561&imageId=168095″ width=”234″ height=”242″ /]“At least you don’t have to shave your legs.” How do you know and why would I want to discuss that with anyone? Don’t ask about any other kind of hair anywhere else, even though I know you’re curious and just begging me to give you the scoop.

“I know how you feel. I have this really bad cold…” or whatever. The truth is you don’t know how I feel and I sincerely hope you never do. I don’t mind talking about you and your life, but don’t compare cancer to a common cold.

“Gee, you look good.” If you’re a relative or a close friend who knows my entire situation, you may comment on my looks. If you’re not, just don’t. For example, I’ve run into people from work at various functions. I’m currently on leave. When I hear “Gee, you look good” from one of them, I hear the unspoken “so why aren’t you at work?” The truth is that cancer can be killing you and you can look fine. Also, when I go out to functions I spend a few days preparing by taking extra naps. I take an hour before I leave to put on lots of makeup and a wig. What do you want me to do, put on green makeup and fake a limp so I look appropriately “sick”?

Furthermore, telling me I look good makes me wonder if I looked awful the last time you saw me. And what happens if you stop saying “Gee, you look good.” Does that mean I look awful now and like I’m going to die soon? Or maybe you mean “You look good even though you’re going to die.” Or “You’re not totally bald so your treatment must not be too bad.” Or “You look good for someone who has such a sallow complexion?” What does it mean??? Again, take a tip from Emily Post, it is never a good idea to comment on someone’s appearance.

The other day I saw a reflection in a big window across a parking lot. It was Truman Capote complete with hat, scarf, glasses, and generally fat and hunched up look. I know he’s dead, but I thought I’d ask for an autograph just in case. As soon as I moved forward I realized that Truman moved at the same time. Then I realized I look almost exactly like Truman Capote these days. In other words, thanks for the compliments, but I know what I look like and I don’t believe you.

Don’t ask for drugs

A few years ago after a surgery a nurse I knew at church asked me if I had any leftover pain medicine. I thought maybe she was asking if I got through surgery without pain and didn’t need to drug myself, so I said, “Yes.” Then she asked if she could have the leftover pills. I thought mine was an isolated case, but I’ve heard several cancer patients mention the same thing happening to them. I have enough trouble in my life without being asked to contribute to someone’s addiction on top of the illegality of sharing prescription drugs.

Don’t judge how I’m going about fighting this or talk about conspiracies

[picapp align=”right” wrap=”true” link=”term=mushroom&iid=5073750″ src=”0/4/1/3/Girl_57_standing_8120.jpg?adImageId=8440779&imageId=5073750″ width=”234″ height=”156″ /]Many people send me information like a brochure I received in the mail titled “Magic Mushrooms that Cure Cancer.” I know that some of this is plainly out of concern for me – you’re just presenting ideas. But please don’t get into conspiracies about how Big Pharma, the Federal Government, and oncologists are just using cancer to earn money and blocking information about magic mushrooms. Lots of oncologists and pharmaceutical employees are cancer patients themselves or have family members who are. They, too, are searching for a cure and they often use organic substances. One of the drugs I’m getting now is derived from the Yew tree.

Furthermore, if someone developed a $5 pill that cured cancer, I know oncologists would be all over getting that to as many people as possible and Big Pharma would be glad to make it. How would this be a money losing proposition for them? Everyone and his cousin’s dog would be lining up to take that $5 pill.

Also, if a group of conspirators is trying to hide information about the magic mushrooms then how come you can find all kinds of alternative treatments with a simple web search? Wouldn’t the Evil Conspirators have put a block on the web?

I have researched my kind of cancer and I’m doing “regular” and alternative therapies at the same time. I’m open to weird stuff, but I check it out very very carefully. So, feel free to present ideas, but leave out the conspiracies, and do a little research yourself before you pass things along.

Finally, don’t worry that I’m killing myself by not doing what you think I should. Also, don’t tell me that it’s the Federal government’s fault and they’re part of the conspiracy. I work for the Federal government among a great number of bright and caring people. They’re too kind and too busy for conspiracies.

So, even though you might believe in magic mushrooms, don’t be disappointed if I don’t. In a sense you’re asking me to experiment with my health so you can find out if your alternative treatment is a fraud or not.

Don’t try to find why this is my fault so you can feel safe

Here’s my “favorite” conversation with a nurse in my “regular” doctor’s office five years ago.

(She reads the chart…. but apparently didn’t bother to read the health questionnaire)

“Oh. You have breast cancer?”

“Yes.”

[picapp align=”right” wrap=”true” link=”term=cigarette&iid=306906″ src=”0303/0000303616.jpg?adImageId=8442128&imageId=306906″ width=”234″ height=”296″ /]”Have you ever smoked?”

“No.”

“Is there cancer in your family?”

“No.” (This is also on the health questionnaire.)

“But you drink, right?”

“No.” (I’m starting to figure out that she’s trying to find a reason to blame me for having cancer so she can feel safer….)

“You should have been getting mammograms.”

“I get them yearly. My cancer didn’t show up on a mammogram and the doctor never felt a lump.” (This should also be in my chart.)

[picapp align=”left” wrap=”true” link=”term=toxic+waste&iid=214862″ src=”0211/de7d81c1-f2f6-4055-97f6-03e4d1da77e2.jpg?adImageId=8441894&imageId=214862″ width=”234″ height=”351″ /]”Have you ever lived near a toxic waste dump?”

“Uh…. Not that I know of.” (Toxic waste dumps are not on the health questionnaire. She’s really fishing now.)

“Do you have stress in your life?”

“Cancer causes stress.” (And right now my blood pressure is going up….)

“You should have a positive attitude. That can cure cancer.” (More on the positive attitude later…)

“Oh… uh… Okay.” (I’m positive I’m going to throttle you if the doctor doesn’t come in here in a minute.)

And then she came out with the kicker….

“You know, there’s a ‘cancer personality”.”

“Oh….???!!” (This was a popular notion at the time — that certain personalities are susceptible to cancer. Actually it’s a cancerous personality and she had it…. then the doctor came in. I should have complained about the nurse, but I just stopped going to that doctor.)

“All things work together for the good” and “This is a life lesson”

The same people seem to say these two gems one after another.

“All things work together…” is in the Bible. I can read the Bible. I can say this to myself if I want to. I’d rather not have it shoved in my face every five minutes. I dare you to think otherwise in my circumstances. It’s like saying “love is patient, love is kind” to someone who just found out her husband had an affair. Use your manners.

As for this being a life lesson, I didn’t sign up for the School of Difficult Life Lessons. I’d rather go to The School Where Everything Goes Right. If you’re so interested in the School of Difficult Life Lessons feel free to sign up for classes. I’ll pay your tuition.

[picapp align=”right” wrap=”true” link=”term=bus&iid=189528″ src=”0185/ab7ff1f2-9933-4c38-b434-6a2b6a6a019c.jpg?adImageId=8441848&imageId=189528″ width=”234″ height=”351″ /]“Any one of us could walk outside and get hit by a bus”

I discussed this in a previous post. I don’t mind this one at all. As I said before, the quick option appeals to me; it doesn’t to other people. So, strike this one from your vocabulary. As one friend of mine – another cancer patient – said, “Yes, but I’ve already been hit by the bus. Now I’m stuck on the bumper and getting dragged around the street.”

“Keep a positive mental attitude”

Someone actually studied cancer patients who were positive and those who were negative during treatment. The statistics show that optimists and pessimists die at the same rate.

The implication of the “always be positive” approach is that if we dare to let ourselves delve into despair and fear then we are feeding our cancer and shortening our lives. That’s a lot of pressure. I know people mean well, but it makes me grumpy and I do occasionally snap at people who say this to me.

No matter how tempted you are to tell me to be positive, you need to remember that I am grieving. I think people make the mistake of equating grief with “negativity” or “not having a positive attitude.” When you are given a terminal diagnosis you go immediately into grief for your loss. For me, besides losing 30 or 40 years of life, I am grieving the loss of hope for the future, my financial stability, the rewards of watching my child grow to adulthood and have children of his own, and the ability to get out of bed thoughtlessly and waste time without feeling guilty.

Think of it this way, would you say to someone whose family member has died “Keep thinking positively”? Of course you wouldn’t. That would be rude. No amount of positive thinking will get anyone through grief. We simply must travel through every stage, and we each must be allowed to do that in our own time without being pushed to some stage we’re not ready for.

The stages of grief ebb and flow. The stages, as posited by Elizabeth Kubler-Ross, include denial, anger, bargaining, depression, and acceptance. Later psychologists revised the stages to shock and numbness, yearning and searching, disorganization and despair, and reorganization. I think I agree with the latter words. Whatever words you use, I am currently ebbing and flowing through every stage except acceptance and reorganization. They’re last on the lists for a reason. I’m not there.

I also can’t be pushed to some stage I’m not ready for. Again, let’s look at grief from the perspective of how people mourn the loss of a loved one. I think the most striking example is the Jewish tradition of mourning. Ages ago people would rip their clothes and throw ashes on their head after a death. I’m not sure that tradition remains, but I do know that after the death, family members stay in the house of the loss and sit for seven days. Friends then can make a Shiva call. They don’t have to say anything; in fact, it’s just fine to sit and say nothing.

After this initial very public grief, the period of mourning continues for 11 to 12 months, thus allowing the mourner a gradual re-entry into normal life. I think this tradition acknowledges the fact that grief for a great loss takes time. I have been dealing with the loss of what I thought was my life since June. It’s now December. I still need some time to mourn.

Besides exchanging the unrealistic concept of “negative” for the truth of grief, I think that we all need to revise our thinking about the word “positive.” Being positive in the midst of grief is a mere momentary distraction, like sending a clown in to distract a bull from killing a cowboy during a rodeo. It’s momentarily effective, and the cowboy escapes until his next ride, but the bull remains deadly and can still kill both the cowboy and the clown.[picapp align=”left” wrap=”true” link=”term=rodeo+clown&iid=223941″ src=”0220/d1bd0163-a217-4928-a7d4-a4791751fdd6.jpg?adImageId=8441684&imageId=223941″ width=”234″ height=”202″ /]

The worse thing about the relentless drive to always be positive is that I suspect that positive cancer patients are simply easier for doctors, friends, and relatives to deal with. I’m not sure anyone actually means it that way, but sometimes that’s how it comes across to me. Remember, it’s okay if I cry; I am mourning. It’s all part of learning to deal with my loss. It’s impossible for you to distract or comfort me out of my grief and no mental trick will get me through it faster. It’s just a long, awful slog. Please don’t send in the clowns.

Instead, focus on hope, and comfort those who mourn. Use your manners, and take a hint from the Bible, which never mentions a positive mental attitude. Remember Isaiah 61.

[picapp align=”right” wrap=”true” link=”term=crown&iid=228790″ src=”0225/605709f8-0e0e-472e-a6e8-d09a6866ee25.jpg?adImageId=8442599&imageId=228790″ width=”234″ height=”351″ /]He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord’s favor and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, planting of the Lord for the display of his splendor.