Wednesday, November 21, 2018

The OMG People

Janet's post last week reminded me of another group of people you may meet on your journey through CancerLand: The Oh My God! people:

The things people will say to you. “You look good”. They say this to him because they heard that he has cancer and they were expecting him to look like crap. It always makes me wonder if later they are going to say, "You look like hell”. 

Or they begin to tell you a story about someone else who had cancer and halfway into the story you can tell that they suddenly realized that the story they are telling you does NOT have a happy ending.

It turns out that the neighbor, coworker or uncle they are starting to tell you about has died of cancer and probably the same kind of cancer that your loved one has …and now, you can see the look on their face—even as words are coming out of their mouth --they are trying to back out of the story they are still telling  you.

They desperately want to redirect themselves, so they can make this story be about something else, but you can see that what they began with—some hope or consolation, like, “He had the same thing.” Or “His chemo wasn’t so bad” is in fact a story that ends with “and then he died.”

That is one version of the OMG People.  Another version is this: They say, “Oh my God, cancer, I’m so sorry and I’ll pray for you.” What does that mean? Will they be praying that his illness goes away, which kind of suggests that some other guy with no praying friends gets to keep theirs?

Or the “OMG you’ll have such a hard time as a caregiver,” or the “OMG he’s gonna be really, really sick, but you can do it”. They give you that great big attta girl right after they devastate you with their sympathy and alarm.

People will tell you all kinds of, “How it’s gonna be” stories and then you find out that their sister had breast cancer, or their boss had lung cancer or lymphoma or some other kind of cancer and some other kind of chemo. People outside of CancerLand almost never understand that chemo is not chemo is not chemo. 

But, my God, I have to be more kind. I was there once too. Before this began I thought that cancer was cancer, and that chemo was chemo. I had to learn so much so fast.

CancerLand is a school, and man, the tuition is a bitch.

Monday, November 12, 2018

Guest Post: Thoughts on Thoughtlessness

Friends--Today we have a guest post from Janet H. I suspect many will relate to her experience:

The Thoughtlessness of the Well-Intentioned  By Janet H.
excerpted from 

In June of this year, I was diagnosed with breast cancer. It was an absolute shock, coming after a routine mammogram. I was three months away from retirement, ready to begin the next chapter of my life, and expected this mammogram to turn out like all the others – clear. There is no history of breast cancer in my family, and no history of cancer, period. I had no frame of reference, no experience, and no depth of knowledge. 

I have had two surgeries, am currently a bit more than halfway through chemotherapy, and have radiation, followed by years of drug therapy, in front of me.

I made a decision nearly from the beginning that I was going to beat this and it wasn't going to beat me. I have a lot to live for – my husband, my children, friends, travel, hobbies, good books, great food. But not every day is a “warrior” day. 

Some days are sad ones, or ones filled with fear of losing things – my strength, my family, my health, the taste of good food – and I need to remind myself that I am, if nothing else, a fighter.

Part of being a fighter is rigorously protecting myself. Once you have an illness that requires your doctors to talk to you about your percentage life expectancy in the next five years, simple gestures and words that I wouldn't have even noticed before take on new meaning. In the interest of other cancer survivors, I offer a few that have struck me as particularly thoughtless:
  • "Well, at least they got it all." Yeah, not so much. Just because I had surgery does not mean that my cancer is gone. In my case, there's a 40% chance that it's still in other lymph nodes and it won't be gone until I finish chemo and radiation. So, when you say this, I am reminded that the cancer is still in my body, and that is not a pleasant reminder.
  • "I am so upset that...[I'm not sleeping, I'm worried all the time, I think about you all the time, I want to help but I don't know how, etc.]" Note the subject of these sentences – the speaker, not the recipient. Saying this helps me not one bit, and changes this into something where I'm either supposed to feel guilty about making you upset, or just go away so I don't upset you anymore. Needless to say, it’s not helpful, and a curious way of making my cancer all about you. I don't need this at all, sorry. When you are ready to leave this sort of bullshit at the door and genuinely ask me how I am, bring it. Otherwise, please stay away.
  • "We're having some friends over, it will be a great time." Sounds innocent enough, but I really am not up for meeting strangers and pretending that I don't have cancer, even for an evening. Plus I’m weak, have low immunity, and mostly can’t eat. Cancer is on my mind 24/7, whether I want it to be or not.
  • "Wishing you a speedy recovery." Ok, this works if you break your leg, or have the flu. Cancer treatment is not speedy, and recovery is illusive. Again, it reminds the recipient of what they don't have – something easily treatable, something that you get over quickly, something they won't be thinking about for the rest of their lives.
  • "Your situation is just like my...[mother's, sister's, friend's, depression, divorce]." It isn't, and putting me in a box that you can relate to simply negates my experience, and our conversation may be a short one and one not to be repeated. Telling me that your sister had a different cancer and did great (but you don't know which kind or her treatment) isn't helpful at all. It will just shut me up.
  •  Cancer, especially breast cancer, is very specific and it is very personal. If you have personally been down this specific road before, I definitely want to hear about your experience, and I will have lots of detailed questions that allow me to figure out whether our experiences connect, and whether we have something in common. Or if you know another survivor and want to put us in touch, that's really helpful. Otherwise, if you really want to show your support, let's leave the indirect or unrelated experience to the side, and just ask me how I'm doing.

What has helped tremendously are friends and family who call or email or text to say "How are you doing today?" or "need anything?" or "how are you holding up?" Keeps me in the moment, which is all I have, and does not presume anything or remind me of what I don't have right now.