Things You Should Never Say or Do to a Cancer Survivor

Author's note: I've just updated this, in two ways: 

• I wanted to include calling thyroid cancer "the good cancer."  
• I took out not asking how I'm doing. I realized that's unreasonable; you want to know. Maybe not as often?

As I was crawling into bed for the night, Messenger buzzed. It was an old friend. This conversation, over the next few minutes, became my go-to example for what to never say to a cancer survivor. I’ve changed relevant facts because I don’t want to embarrass them; I want you to see how easy it is to be an ass. I put my Daria-inspired thoughts in italics.

• How are you feeling? Hope you have a good New Years and get better! Had first chemo correct? Notice anything?

Thanks. I am hanging in.
Yep day xx post
Been interesting
Lots of side effects. Side effects from stuff they give you for the side effects.
...Time for me to hit the sack; its midnight!

• Is this breast cancer?  Didn't you have before?
• I bet you feel bad.

Yes and yes. The chemo was easier before.

• Same area?

...Is this person drunk? Seriously?
Yes it is a recurrence but more aggressive.

• Why don't you remove your breast, won't that help?

...I see that you pay careful attention to what I post!!! How could anyone think it was ok to ask that? 

I did. Most chemo is designed to catch the cells that hang around to cause trouble again. Micro cancers. I am improving my odds of not getting another recurrence.

• That is bummer. Maybe chemo was easy first while you expected worse, this time opposite. That's good, but this tougher regimen will kick your but. (sic)

...Why am I bothering?  How do I just get rid of this person?

• It and being positive is all you can do. That really makes a huge difference. You know (SOME RANDOM PERSON) had it real bad and has been good. She has a great attitude.

...Oh, jeez, here we go. How do you know? You hold her head over the toilet?
Yep. Thank you for checking in. Means a lot.

• It's scary, you should be checked on.

...Yeah, I only have $100’s of thousands of dollars invested in that so far, I’ll be sure to get right to your suggestion.

• We had a family friend who died years ago had cancer. He fought hard, was in remission three times. What he had was very bad type. He lived about 8 years; three more than they thought. Never have I known anyone so positive. He wore that bald head proud too!

It leaves you with a smile to think about him, doesn't it? That's a special person.
...Because, what this person is really telling me is that they missed this dude. At the same time, dude, whoever and wherever you may be, good job holding your tongue!

• He was a very large man, fat, I think that actually helped treatments had him so sick he would have wasted away. We went to Lugnuts game. He is bald, people stare....He could  of cared less. He was a beautiful person.

....WTH? Did you just tell me that a fat man was able to survive longer because he was fat? Does every thought that crosses your mind find its way to your keyboard? What is wrong with you? 

Keep him in your heart when times get tough. He's still with you. Listen I need to get some zzzz's.

Me too.
Rest, stay strong

ty

....ARRRRRRGGGG!!!

Here is my list of things you should never say or do:

1. Tell me, "My (name close relative, friend, etc) had cancer..."
You can tell from my story why this is a horrible thing to do. When I first got cancer decades ago, I literally clung for hope on the stories of long-time survivors. I can’t tell you what that meant to me! I also can’t tell you how it hurt to lose a few folks I met along the way…the gals and guys who transitioned from battle to legend. So, the last thing I want is someone else's sad baggage. 

2. Ask me: "How did you get cancer?” "What did you do (wrong)?"

I’m always amazed that people don’t have the manners not to ask. I am asked so often, that I have a pretty standard answer, but here's the real answer:

WE NEVER, EVER KNOW why we got cancer. Oh, we can guess: Doctors like to say genetics, but that’s proving thin. The real answer? One or more cells (for whatever reason) forgot how to die, and then started a party in my body. End of story.

Like lung-cancer patients, I’ve been asked if I smoked. (Answer: yes, for a time, long ago. I also ran four miles a day in my 30s and 40s and ate fresh, home-grown foods.) It remains much less likely a contributor than, say, the high-estrogen birth control pills the doctors gave me for cramps, the radiation treatments that may have led to later cancers, and a host of other contributors, like the above-ground nuclear testing fallout we all played outside under as children of the 60s.

Think about your motivation for asking a cancer patient why: You want to avoid my fate! You hope that you can check off that box and say, "Well, I'm not going to die a horrible death."  Worse, there's a bit of judgement: "It was her character flaw that caused her cancer."  However far short I may fall of sainthood, I can tell you that lots of folks do much worse and they don't get cancer. 

I suggest that's trying to figure out why is a fool's errand. The fact is, we have more carcinogens in our daily lives than at any time in human history. So, stop victim-blaming and figure out how you can make the world healthier.  

3. Call any cancer, especially thyroid cancer, "the good cancer."
I have had nearly every one of my endocrinologists use this. I fired one of them, but I realized that the practice is just too rife. Still, it is blindingly inappropriate. The challenges of thyroid cancer, any cancer, are beyond understanding until you have been there. Even the article that I link to understates some of the issues: we remain symptomatic and often unwell throughout our lives, especially when on standard care. The medical community dismisses these issues, reflecting a level of malpractice, in my opinion. Those who have battled other cancers know that their doctors are working hard to improve care for them. Not so with thyroid cancer, it seems. Doctors seem content to perform thryoidectomies, then prescribe a less-than-effective pill, and dismiss your concerns after.  That's pretty outrageous. It's not the good cancer *at all.*

4. Ask (repeatedly) "Can I do anything/clean/shop?"
Look, I can’t stand the idea that I’m impaired in any way. I don’t want to be in a position to need help, so accepting it means I have to acknowledge that I can’t manage. Just don’t ask. Do something that has your heart in it, if you want, or ask Brian what I need, but for heaven’s sake stop asking me. 

5. Say, "You are strong; you will get through this."
Trust me, I’m not. I’m regularly reduced to impotent, flowing tears of despair when I'm sick. And hell, I may actually die. You don’t know! I have endurance, not strength. But thanks for the thought.

6. Exhort me to "Stay positive."
This is truly unfair to a cancer survivor. Want to know how positivity works out? Read this blog.

7. Tell me, "I saw an article and you should..."

I have had some downright dangerous advice from my friends. Some of the things people close to me have suggested would lead straight to another cancer or worse.  

Many of you know me by now. You probably know that I’ve researched this to the molecular level, and taken it to the metaphysical. I make informed, clear-headed, tough choices. Unless you are being paid, by me, to give me medical advice, I probably find it unwelcome. (Hell, most of the time, I find the advice of the ones I AM paying to be unwelcome!)

8. Say, "God doesn't give you more than you can handle."
I had a Christian friend, years ago, who survived a horrible robbery/rape that left her back permanently damaged (from fighting back!) She was the one who clued me in: the Bible never said that. It makes those who feel at the end of their rope ashamed, not comforted. Fellow Christians, do you ever take a moment to think about how it makes people feel who don’t believe? That's a never, ever.

9. Say "I know how you feel."  
No, you don’t. I don’t how my fellow travelers feel. You can’t possibly know how I feel; it is the human condition. Generally speaking, we should never tell someone we know how they feel.

10. Post a cancer meme or fundraiser on my Facebook page. This goes quadruple for the chain letter types.

A short while ago more than one friend did this very thing: sent me a "You've been specially selected for a blessing" meme that exhorted me to immediately send it to 15 friends to obtain the blessing. At least it didn't threaten a curse if I didn't!  

Another is the "Some people just want to beat cancer meme."  It always ends with "I bet you won't repost." I believe I have seen it on my timeline over 50 times so far.  I won't.

Please don't ever send me these.

Please don't send me fundraisers. First, because I should be getting from these folks, not giving. Also, most of the fundraisers are scams. Even the legitimate ones are notoriously poor at using funds for actual research, while legitimate need goes unmet. If you aren't sure how the funds will be handled, please don't. Want a meaningful cause? Everyone needs to support metastatic cancer research.

I know you want to express solidarity. Let me suggest inspiration, funny posts, cat videos, screaming goats, anything but one more "Bet you won't repost this" cancer meme.

I know you love me, I know you want to help. Your good thoughts and your prayers go far in sustaining me. At the same time, I will appreciate it if you take a moment to think before you say or do. 

Here's another take on the what not to do from Yahoo!

Add your "what-not-to-dos" in the comments, on Twitter, Facebook or Inpsire.com.