What to say or not say

A few weeks ago I posted a link on my facebook page to a short video called "Metastatic Breast Cancer: Dumb Things People Say." I wasn't crazy about the title but I posted it anyway because I thought it brought attention to the fact that a lot of people don't know what to say when they hear you have cancer, especially if it's terminal. When they do say things that are inappropriate I think it's more from a lack of understanding than it is from a lack of brain cells, which is why I don't like the word dumb. From reading the intro to my blog you'll have learned that I also don't like the words battle or journey.

When I hear the word battle I automatically hear the words 'winner' and 'loser.' I envision warriors, scenes from Braveheart, and battlefields full of the bad guys laying defeated on the ground. If you are a fighter in a cancer battle and you lose does that mean you're the bad guy? Or just that you weren't a good enough fighter? Does it mean you weren't strong enough or that you gave up when you saw that you were losing? Not to me. I avoid that word so that I can avoid that image. The word journey is at the other end of the spectrum for me--a peaceful trek to a beautiful place where you send postcards from. I want to journey to Italy, the Florida Keys or anywhere Bruce Springsteen is performing. I don't want to journey through, or to, cancer. I don't want to say to anyone, "wish you were here."

After I posted the video link I had several people contact me and say they were grateful I had because it gave them insight into what to say and what not to say. Even a few people within the health care field, who come in contact with cancer patients on a regular basis, told me the video was helpful to them. Until then I had been debating about whether to write a blog or not but the feedback I received after posting the video sealed it for me. People were eager to learn how to talk to people with cancer.

After my first post, a reader, who also has cancer, posted a comment saying she disliked the word strong. I, too, remember when I was first diagnosed people would use that word with me a lot. "You're strong, you'll get through it."  "I admire your strength." "You're the strongest person I know."

I wondered what defined me as being strong in their eyes and what would they have said to me if I wasn't perceived as strong---"Sorry, you're so weak. I guess you don't have a fighting chance, eh?" Or worse, would they have just said nothing at all?  If they saw me fall apart, as I often do, would they think less of me?  Many days I don't feel strong. However, I also love the quote "You never know how strong you are until being strong is the only choice you have." I know that strength is the best word to use to describe any cancer patient's ability to keep going in the face of pain and fear. I have a love-hate relationship with the word strong.

I remember being in my kitchen one day with an extended family member and just starting to cry. She hugged me and said, "That's the first time I've seen you break down." I realized that perhaps my strong veneer was sending the wrong message that I didn't need or want support. A few months later I was not doing well at all. I was alone in my bedroom and my husband, son and neighbour were outside. I ended up having to send someone out to get my husband and he rushed me to the hospital where I was admitted for an immediate blood transfusion. In the chaos of people running upstairs to get me I remember seeing my son and trying to hide my pain and tears from him. I could see the fear in his eyes because he had never seen me like that and, despite what was happening to me at that moment, my instinct was still to protect him from seeing me like that. Later, I understood that I wasn't doing anyone any favours by shielding them from the reality of cancer and my situation--by being strong. I still find it difficult to be vulnerable or 'weak' in front of people, but I'm working on it because it's their strength I need to draw on to get me through.

Strong, weak, battle, journey....they are all just words that are without power until we assign it to them. I can get offended or I can try and see that people are just grasping for something to say so that I know they care and are thinking about me. When people tell me they are praying for me, I take comfort in that and it doesn't matter whether I pray myself or even if I believe in God because it is their intent that brings me solace. I have had countless people tell me that they are here for me if I need them and then they go on to tell me exactly what they will do for me (which really helps me to know that they are being sincere and authentic). I've had people offer to drive me to appointments and treatments, to cook for me, to do my gardening, and even to clean my toilets (from someone who admitted she didn't clean her own toilets but she would clean mine if that's what I needed!). All of these offers make me feel so fortunate, even if I never take anyone up on them.

Sometimes though, no matter how well intentioned someone's words are, what comes out is, well, I don't know...is there a nice word for dumb?

After I had lost all my hair from chemo I was at a summer BBQ. It was hot and I rarely wore a wig. A friend of a friend, who obviously wasn't in the loop about my situation, pointed at my bald head, gave me the thumbs up and said "Cops for Cancer?" I smiled and replied, "Nope, just cancer." Needless to say, there was an awkward silence and he moved on and my friend and I just started laughing. I did feel bad for about a minute that I didn't try to make him feel better for his faux pas, but sometimes I'm just not that strong.

So even in the face of something inappropriate I try to find humour. The bottom line for me is there is no wrong thing to say. If you have questions, ask away. If you want to keep me in your thoughts, please do. If you are struggling with what to say, just say that.

Until next time......carry on.