Do's and Don'ts When Talking to Cancer Patients

I'd posted this on Facebook on 2/1/17, about 4 weeks after I'd told all my friends and family about my situation.  I think this is valuable and worth a "stickey".


So, I wrote this a while back, then was afraid to post it because I don’t want to hurt anyone’s feelings. But after going through this YET AGAIN, I have got to put this out:

Why why WHY do people think I need to hear cancer horror stories when they hear about my situation?

Here’s something that would NEVER go through my mind: “Oh, Susan has cancer. I need to go tell her about my neighbor’s sister who had a horrible experience, how she reacted badly to everything, was never ever the same again, and even after she was cured, the cancer came back and she died a very painful death, so painful that death was a relief. Yes, to be helpful and supportive, I need to go tell Susan all about this.”

WHAT THE HOLY HELL FUCK???

I’m really not trying to hurt feelings here. I know people think they are being helpful, or maybe empathizing, by sharing other people’s cancer stories. But for the benefit of everyone who comes after me, please DON’T. JUST DON’T.

Understand that the people treating me are being VERY THOROUGH. I’m not seeing one doctor. I’m being treated by an entire team of professionals who have seen everything. I have a patient advocate (a breast cancer survivor), the surgeon’s RN (also a breast cancer survivor). My surgeon is considered one of the best in the North Bay, and the facility conducts weekly peer reviews of all the cases they treat. I will also be treated by a team of oncologists who also consult with each other on a daily basis.

I have been in their facilities receiving exams, counseling and consultations. By the time I have surgery, Al and I will have spent more than 6 hours in their offices going over EVERYTHING, including options, statistics, recommendations, what to expect, what we know and what we don’t know about my situation. They have loaded me with an overwhelming amount of information and have responded immediately every time I’ve called to ask them follow-up questions. They are very adept at telling me what I need to worry about, what I don’t need to worry about, when I will know more—and most importantly—to not stress over things that haven’t happened, probably won’t happen, or procedures I may not need. They aren’t keeping me in the dark about anything. And I can assure you, if something happened to your neighbor’s sister’s coworker, my team of health care professionals has already experienced it and will share it with me if they think it’s relevant to my situation.

So what DO you say if you want to be helpful and supportive?

1) “If there’s anything I can do for you I’m here.” (And really, we can end there. That is the nicest, most supportive response that needs nothing more. And to the credit of the vast majority of my friends and family, that is what I’m getting. But if you want to go further…)

2) I/my friend/sister/neighbor have been through it. If there’s anything you want to ask or talk about with someone who has been there, put me on your list. (It DOES help knowing the number of people out there who have been in my shoes. And I have reached out to some when I want to talk. I'd just rather not share war stories until my war is over.)

3) If you do have experience that you think will be helpful sharing, keep it to what went WELL. “I had good luck with this”, “I found this was really helpful,” “I went to this facility and liked them a lot.” Those kinds of things are very helpful as long as they aren’t bookended in comments like, “[This] was horrible, don't do that because [insert cancer horror story], so be sure you do [this] instead.”

Cancers are like snowflakes. There are no two experiences exactly alike. In the end, I may have common experiences with others, but no one will know what those are until after the fact. So until then, I would really rather not hear about any of it. I appreciate the sentiment, but trust that I am being covered and am in very capable hands.

Hopefully, this rant hasn’t hurt feelings. I genuinely love and care for all my friends and know that people’s hearts are in the right places. But it’s getting to the point where I’m afraid to run into other humans for fear of what they’ll say. And the last thing a person wants to be in this situation is isolated from their friends.