Back in June, when I wrote my first blog entry, I remember pressing 'publish' and saying 'It's gone viral, it's gone viral' and Keith and I had a good laugh (well, actually, I think Keith was laughing at me instead of with me). I think I had this assumption that thousands of people would flock to my blog and hang off my every cancer word. Does the online world not realize what big of a deal (I think) I am? More realistically, now, I like to think that I am educating some individuals who have never had cancer while I am verbalizing and validating the thoughts of cancer patients/survivors. The following is about what different people have said to me and my interpretation of it since I was diagnosed with cancer.
From the day I was diagnosed, I have been, uh, surprised at some of the comments that people have made about me having cancer. I've had a friend ask if she could see my chest post-mastectomy, I've been asked if I lost all of my hair on my body, and I've had a family member refer to cancer as 'some problems' as in 'I heard you had some problems earlier this year' (obviously I don't see this person very often and my response was a snarky 'Yep, but I have since fixed them all'). Now, to be fair, this person is from a generation that when someone my age was diagnosed with cancer 'back in the day' the odds of survival were very slim so saying the word 'cancer' isn't something this person is used to.
It always amazed me what people said, especially when I was in the thick of things. Before my fourth chemo, I had someone tell me about one of her friends who almost died after a reaction to her fourth chemo treatment (the cocktail changes at chemo #4 for many breast cancer patients). If I wasn't scared before knowing this, I sure was afterwards. Also, I don't know how many people have told me about people they know who have died from cancer - I'm fully aware that it kills a lot of people. These are part of the 'wrong things to say'. And, the amount of times I heard 'it's only hair...', well my friend, are you going to shave yours in support of me, no, you're not so maybe it's a little more than 'just hair'.
In the beginning, there seemed to be a very obvious line between 'right things to say' and 'wrong things to say' but that line has since blurred. When someone says 'How are you feeling?' I often think 'If I have to answer that question one more time..." and actually, about a month ago, I avoided going to a party just to avoid that question - I knew it would be asked so many times. I can only make so many jokes about how my hair looks like a cocker spaniel from behind and having to talk about going back to work makes me tired of hearing myself talk. Now does that sound like something a complete bitch would say? Yep, sure does. How can you say that you are tired of people asking about your well being? Well, it falls under the same category as hearing 'just stay positive' 14 times a day, sometimes you just get questioned/cancered out. At the same time, when I am not asked how I am feeling I wonder if that person doesn't care about me - I had cancer, ya know!
I've talked about this many times, especially with my mom. She always says that there is no right thing to say to me and sometimes she's right (don't tell her I said that, ok?), sometimes there isn't a right thing to say to me. Some times I don't want to be the 'cancer girl' so I don't want to talk about how I'm feeling and other times I want my hardships to be acknowledged and want people to say 'how is the transition to your new normal going?'. In other words, it's a total guessing game anymore.
Some things are still black and white though, I can safely say some things are not appropriate. In December, my mom got a Christmas card that said something along the lines of 'I heard you had breast cancer - I hope you feel better.' First, yes, this person did think that it was my mom who had breast cancer (it's a safe assumption considering she is in the 'normal' age group and I am not but that wasn't even the part of card that is notable). The 'I hope you feel better' really rubbed me the wrong way. My mom saw nothing wrong with it. My mom asked me what the correct thing would have been to say and I didn't have a response. To me 'I hope you feel better' sounds like you were a little under the weather, not like you had just had a boob chopped off and then went through 6 rounds of chemo. My mom said she thought the comment was genuine and I still think it felt uninformed (is that the word I'm looking for?). This sparked a long 'conversation' about cancer etiquette between me and my mom.
What are the right and wrong things to say? I don't think I have an answer to that. I know that some people are offended by the term 'cancer survivor' (because it implies that those who are still living somehow fought harder than those who are not) while others have learned to hate the colour 'pink' and what it represents - yet I have no aversion to either. It's a tough thing to write about because I talk so much about the importance of creating and maintaining a cancer dialogue and yet I am writing about what not to say.
In one of my sociolinguistics classes, we learned about the difference between a descriptivist and a prescriptivist. In the case of linguistics, a descriptivist explains the way people talk whereas a prescriptivist explains the way we should talk (for example, we use 'less' instead of 'fewer' in many cases anymore - 'David had less cookies than John' a descriptivist would note the use of the word 'less', a prescriptivist would express the inappropriate use of the word 'less' and suggest the word 'fewer' as the appropriate substitution.) I unfortunately, am a self-proclaimed prescriptivist. I think there should a list of rules and those rules should be followed (I think this is why I like math so much). When applying this to cancer, I think the same should be said for speaking to cancer patients/survivors, there are some things that should not be said and list of others that should be.
Because the list would be infinite, I tried to make a list of rules to follow when speaking with someone who has or has had cancer. Is this list upsurd? Yes. Would I have found it unnecessary prior to having cancer? Yes. Do I think something like this should exist to prevent some of the ignorant things that people say to those who have cancer? Obviously.
This is a random list of 10 things to keep in mind, it's not a complete list, it may not even be accurate for some people but for me, I sometimes wished I could have given it to some people that I spoke to prior to having spoken with them.
1. Imagine yourself in that position - would you be offended by what your about to say?
2. Nothing is expected of you - don't speak just to fill the silence
3. Although I have cancer, cancer doesn't have me, feel free to talk to me about any thing other than cancer
4. Try to balance your curiousity with sensitivity
5. Sometimes when I'm venting, I just need to vent - I don't want you to fix my problems
6. Try to be supportive not sympathetic
7. Don't tell me about someone you know who has died from cancer
8. Invite me to do regular activity - I have cancer, I'm not dead
9. Approach the 'stay positive' subject lightly - you throw up for 3 days and then be positive afterwards
10. Think before you speak (may be this should be #1)
I wish I could have given this list to some people that I have encountered over the past 10 1/2 months as a guideline for what to say to me 'next time'. I wouldn't have thought that people needed a list to follow but based on my experience, people are either too nervous, too uninformed or too insensitive to know what not to say. This isn't coming from a place of anger but instead a place of past experience and a place from which I hope to help educate about cancer etiquette.