Over the past couple of months, I have been sharing my experiences, via this blog, regarding my change in health status (how’s that for putting a positive spin on finding out you have pancreas cancer). Although it is less prevalent now, in the beginning I felt as if sharing my diagnosis often led to a sense of awkwardness in the people with whom I shared. I think the awkwardness stems from people wanting to say something…anything, but not knowing what to say.
Over the next two days, I am going to provide a public service: I’m going to provide a list of things NOT to say to me in particular, and perhaps people with cancer, in general. This list is developed after reading similar lists I found on the net. Some of these are original, some are specifically discussed in Lori Hope’s book “Help Me Live: 20 Things People with Cancer Want you to Know”, but all of it has to do with what I would appreciate folks not saying to me.
Now, before proceeding, let me offer the following blanket immunity: I do not hold you at fault if you have said any of the following things to me. My only hope is that moving forward you will have a better idea of what may push my ‘buttons’. (And don’t worry — I’m also going to provide a list of things TO say, as well, in a later blog post.)
10) “You look good.” While it’s nice to hear that one looks good if you are feeling well, it’s harder to accept when you are feeling tired or nauseous or generally crappy. When people say “you look good”, it’s easy to be reminded of the old Saturday Night Live skit in which Billy Crystal would tell folks “You look mahvelous” and that it’s better to “…look good than to feel good.” In this regard, please simply ask me, first, how I am feeling before telling me I look good.
9) “Don’t worry! You’ll be fine!” I know people mean this to be supportive, but in reality it trivializes what I am currently going through and what I will likely be going through after this 6-week treatment cycle is completed. My doctors do not know if I’ll be fine. If they don’t know, how could you? Pancreas cancer is particularly pernicious; even if my 6-week cycle of radiation / chemotherapy (I’m being given 5FU) is successful, I will continue to need weekly infusions of another chemotherapy (gemcitabine) for 6-9 months after, if not longer. Presuming I am a candidate for surgery and I survive a Whipple procedure, I will continue to have CT scans every 3 months or so, always wondering if the next scan will show signs of recurrence. This is not negative thinking, it’s just the reality of my disease. So perhaps, instead, just agree that ‘Cancer Sucks!‘
“How are you feeling?” This simple question sounds innocent enough, but it is broad and can be interpreted in many different ways (from the very benign to the very anxiety producing). Such a broad question could be interpreted, for example, as inquiring about my general state of being. There have been times when someone has asked me how I am doing and I have wanted to respond, “I have cancer! How do you think I am doing?” Instead, ask “How am I doing today ?” Focusing on the specific helps ME focus on the specific, rather than dealing with issues (e.g., the future) that I have taken great efforts to avoid thinking about. As I have told many, I have been very good at being ‘instrumental’ (making and keeping appointments, getting copies of my records, etc.) while avoiding having to deal with the emotional aspect of my cancer.
7) “Think positively!” / “Have a positive attitude!” / “Be strong!” Many people believe (and have told me) that having a positive attitude is the key to beating illness, in general, and cancer, in particular. While I am doing my very best to maintain a positive attitude, there are times, particularly when I have been thinking about the future, when it’s very difficult to be positive. Lori Hope quoted Dr. Jimmie Holland (who wrote The Human Side of Cancer) as saying: “All this hype claiming that if you don’t have a positive attitude…you are making your tumor grow faster invalidates people’s natural and understandable reactions to a threat to their lives.” If this is all you can come up with, perhaps this is a good opportunity to practice the benefits of silence. Better yet, just let me know that you are there for me (there to listen or help or whatever, as needed)!
6) Don’t tell me about your fears. As I have said above, I am doing what I can to most effectively deal with my cancer; it takes a lot of energy, which leaves very little to deal with other people’s fears. I know this sounds a bit odd, as I have previously stated that I have gone out of my way to try and assuage the concerns of my friends. I guess the difference has to do with whether I inquire about your concerns / fears versus having you tell me about them unsolicited. This doesn’t mean people cannot talk to me about the challenges in their lives. I will continue to be supportive as much as I am able. However, I am trying to give myself permission, when it gets too much, to say, “I’m sorry you are having difficulties. If you need to talk to someone about these things, you need to find someone other than me with whom to do so.”
Again, if you said any of these things, it’s water under the bridge. You didn’t know then; now you do. It’s all good moving forward.
Tomorrow is the top 5 things I wish people wouldn’t say to me. Until then…