Let me preface this by saying, I am not pointing to a specific person or event. People have commented on how I put a face on this awful disease and I appreciate that. This post is not meant to keep anyone from making conversation. What I want it to do is make people think before they say something. I’ve said some things I wish I could take back now because I realize just how (okay, chemo brain is setting in and I can’t think of the right word now) they were what I thought I should say rather than what the person needed to hear. This is not an attack, more of a suggestion.
I have been doing a lot of research about cancer, mostly because I’m stuck in the house and if I bake anymore goodies I will probably be the first person in history to actually gain weight while undergoing chemotherapy. I’ve seen how to cope, how to be a good caregiver, how to care for yourself, what to eat, survivor stories and the list goes on. What I’ve not seen in any great detail is what NOT to say to someone with cancer. Yes, there are some things that cancer patients would rather not hear, at least in my opinion. I did run this list past my friends Cathy and Lisa who are both cancer survivors, and they are generally in agreement with me.
1. “You look good.” Okay, this is a compliment and, yes, it’s nice to hear. However, there are many times when we are just putting on our happy face so others don’t feel uncomfortable. And sometimes I feel like people are saying, “You look good – for someone with cancer.” I know I look very different. My eyebrows are very thin, my eyelashes look like they’ve been parted in preparation for braiding. My face is very pale, unless I’ve just completed chemo, then I look perpetually flushed. I bought my wig before the chemo really kicked in, so now the hair color is too dark for my pale face. Sorry folks, I don’t look good. I just don’t look as bad as you thought I would.
2. “You’re so brave.” No, I’m not. I’m scared to death. I have the cancer monster sitting on my shoulder all the time and he chants in my ear “What if it doesn’t work? Your numbers are too high. You won’t see your boys get married.” However, I have two young sons who can’t afford to have a Mom show fear because they are scared enough as it is. My husband is now our sole provider and is often doing the work for two around the house so being scared around him is rarely on option. I hide it from my mom (or at least I did, the cat’s out of the bag now). So while I may crack jokes, find the bright spots in chemo (no shaving my legs for the time being) and smile, inside I am terrified that I am not going to beat the monster. And the monster knows it.
3. “Only ___ treatments until you’re done. Isn’t that great!” Yeah, I have ___ number of times to experience nausea, body aches, headaches, light sensitivity and wonder just how much more neuropathy my hands and feet will have to endure. I don’t focus on how many treatments are left, despite what I say. I focus on how I’m going to get through the next day, or on a bad day, hour.
4. “Spring will be here soon and you’ll be done.” Yes, spring will come with all its new beginnings. Even the cancer monster can’t stop that. As I said previously, I can’t even think past tomorrow. John is trying to plan an anniversary get-away for us in May. He doesn’t understand I can’t think that far ahead. I can’t imagine a life without it revolving around lab tests, doctor visits and chemotherapy because that IS my life right now. I know I should look forward to the future, but I can’t. It’s too hard. What if I don’t get better, then what will spring bring? I go through the motions, but it’s just too hard to think that far ahead.
5. “You’ll beat this and be fine.” This is the one I really hate. Aside from my friends Cathy and Lisa, I immediately tune out anyone else who says it, even my mom and husband. I don’t care that your friend’s cousin, the cashier at the grocery or the person in the other cubicle at work beat ovarian cancer. Statistics don’t lie. Statistically speaking at some point this disease will kill me. Granted it could be 40 years from now, but it probably will. Even my oncologist, who is an excellent doctor and does some cutting edge research, says there are no guarantees. Yes, some of this is the cancer monster talking, but it’s also the reality I face. And I will never “be fine.” I will forever be dogged by ovarian cancer. I will put it on every medical questionnaire I ever answer. My labs will always be done in the Outpatient Cancer Center at the hospital. I will always bear the scar of my Port-a-Cath and hysterectomy. While I may forget for an hour, day or even longer, I will never actually beat it. To beat it means it won’t come back and that may or may not be the case. Cathy and Lisa have every right to tell me this. They face the same future I do. And I value those words coming from them. They get it. My niece Brittany, unfortunately, gets it too. She just completed radiation for thyroid cancer. Unless you’ve had cancer, you don’t get it.
None of this is meant to be mean. I know people mean well and just don’t know what to say so they say these things. And that’s okay. But please remember that is always okay to say, “I don’t know what to say,” because most of the time I don’t know what to say either.