Talking to People With Cancer 101

Found this on another blog:

1. Before recommending treatment options, do some research, and be sure not to imply chemotherapy, surgery or radiotherapy etc are unnecessary or pointless.
Its tedious having to feign interest in a friend’s well-meaning rant about alternative treatments that have no evidence suggesting their effectiveness combating cancer. Cancer patients go through hell to be cured. The usual treatments (listed above) are the usual treatments because they are known to be effective. Implying that what we go through is pointless or unnecessary is offensive, upsetting, ignorant and exasperating. 

2. When we’re talking about our experiences, starting rambling about people who’ve died or are dying from cancer is not an appropriate segue. 
This should be obvious, but it’s not. People do this shit. Once you’ve been diagnosed with something like cancer you are constantly aware of your own mortality and the possibility of an early death. We are sorry you’ve lost/are losing people, but directly connecting death to what we are going through isn’t really helpful or what we want from friends most of the time. 

3. Just because of what we’re going through, doesn’t mean we suddenly lose interest in what’s going on for other people.
You are our FRIENDS. We care about you and want to know what’s going on in your lives MORE THAN EVER. When you’re sick it’s easy to become separated from the normal world. We want very much to feel involved and connected in the lives of the people important to us.

4. Don’t treat us like we’re fragile. 
Well, we might be physically. We might be tired a lot. But we won’t break if you share a bit of bad news with us, or ask a hard question about what’s going on with us. Use your common sense. Be sensitive, but there is nothing more frustrating than people very obviously beating around the bush with sensitive issues like our prognosis or pain or suffering or other nasty stuff. With the really scary things, sometime no one asks, so we assume no one wants to know and we never get to talk about it.

5. Don’t act scared around us.
Yes, we’re the same person.
No, we aren’t judging you for angsting about homework or something.
No, we aren’t about to fall to the floor and die right in front of you.
No, cancer is not contagious.

6. Don’t stare at our bald heads or lack of eyebrows when you think we’re not looking. 
You don’t have to be weird about it. Mention it. Rub our heads. But don’t turn our appearance into the elephant in the room. We get enough of that crap from strangers in the street. And yes we will notice.

7. If you’re not sure about how to approach a topic with us, or if you can hug us or something, anything, ASK.
We UNDERSTAND that there is no instruction manual for our friends and family, just like there is no instruction manual for US. No one knows how to deal with this. And we get that. So just ask if you have a question.

8. Remember that cancer does not discriminate.
A lot of cancer just happens. People who never smoke a day in their lives get lung cancer. Virgin Mary types get ovarian cancer. Rich, poor, good, bad, vegan, carnivore, natural, chemical. Every lifestyle can end in cancer. I’m pretty sure most do.

9. Implying it was somehow our fault or in our control is not ok. At all. Do not.
Don’t “what if” or “maybe if you hadn’t” or “it’s because you eat meat” or “maybe if you didn’t use deodorant” or other insensitive crap. There are infinite environmental, biological, and genetic variables. We all produce thousands of cancer cells every day. It just takes one to be missed.

10. If we say we don’t want to talk about it, drop that shit.


Art Therapy And Mindfulness Training Lower Stress In Breast Cancer Patients: Study

Great more money, time, and energy wasted on this non-sense. Before I got cancer, I believed in positive thinking, etc. But I am tired of this pseudo science. I have been through cancer treatment and dread recurrence. I AM STRESSED about that, and the fact that this stress might cause recurrence causes even more stress for me. Please read Barbara Ehreneich’s Bright Sided, first chapter, she lays it out much better. I refuse to believe stress caused my cancer or will cause it to come back. It is equivalent to blaming the patient. Spend money, time, and energy finding the real biological causes of cancer (hello, environmental pollution caused  by huge corporations that lobby our government to look the other way as they pollute the air?), and stop placing this unnecessary responsibility on the patients. We got enough on our plates, ya dig? 

My Eyes Are Up Here

I notice that I often unconsciously place my hand on the spot where my breast used to be. It’s sort of like a breast, at least more so than right after my mastectomy. As I’ve previously mentioned, there’s a calzone-shaped tissue expander in there right under my skin. I do it so often that I’ve begun to worry that I’ll be talking to one of my patients and suddenly find that I have put my hand under my bra without even realizing it.

I have to admit, it’s a pretty good hand warmer. Since I don’t go around topless, it’s well insulated by clothing. Plus, it’s located near the nuclear reactor part of my body, where the hot flashes seem to originate. And since the skin over the expander has no sensation, it is not unpleasant to touch it with an ice cube cold hand.

But mostly, I think…

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cancer in my thirties

So I spent Thursday night through Friday morning in the E.R. with one of my sons.  I was reluctant to go in, but his 106.2 degree fever and listlessness made it necessary.  Though no one likes the emergency room, I have a developed a particular and overwhelming distaste for the whole hospital scene.  And, sadly, this hospital overnight prompted me to realize how “jaded” I’ve become when it comes to the severity of symptoms and illnesses in general.  Call it another side effect of being a cancer patient.

What I am afraid to admit out loud — and even really hesitant to share in this, my somewhat anonymous blog, is that I am beginning to wonder if cancer is interfering with my ability to be the kind of parent and person I want to be (and the kind of parent/person I used to be).

While procedures and blood draws and…

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Too Quick to have Mastectomy?

Interesting tidbit on Huffpost. Here are the comments I sent to Huffpost in response:

There are several interesting aspects to this article. 1) It seems to imply that the either the medical industry is pushing women to get unnecessary procedures and/or women are not making informed decisions. While I appreciate the idea of a watchdog attitude toward the medical industry I worry the motivation behind it is to cut medical costs, but not for patients. 2) It keeps using “survival” as the only measuring stick. Yes, surviving is the best; but why not study risk of recurrence that does not end in death? Maybe women go for mastectomy to avoid not just dying, but going through the hell of cancer treatment again. 3) The last sentence, yes, it would be interesting to see if perhaps women want a sense of control (cancer robs one of that). After eating right, exercising, not drinking, and all the other crap, being a woman with breasts is still the biggest risk factor, why not eliminate it?  


What is it about breast cancer….

Love this, from another blog I follow on Tumblr. I “get” why other cancer patients get sick of the pink ribbon, but I hope these folks do not think just because I have “that special cancer” that I’m automatically pro-pink. There is a lot to be desired about pink October, and it just makes me sick to even see the ribbons most of the time. There is a lot of anger out there, I hope corporations that use the pink start to wake up before it bites everyone in the ass.

More unnecessary cancer hype

So found this on Huffington Post. People will see “unnecessary breast cancer treatment” and not make it to the third paragraph which states “(m)ammograms are still worthwhile,” as well as the rest of the article which essentially says science does not know how to determine which cancers will progress into a threat. So…why did the study not go ahead and figure out how to tell when a cancer needs to be treated or not? I mean is the current method, wait and see if it spreads around, wrecking women’s breasts, so more mastectomies can be done, or if patients die? But as offensively pointed out in this post, screening is “only worthwhile if it finds cancers destined to cause death”. I mean, WTF? I’m still alive (hurray!), but I’d rather not have had the cancer at all, if you don’t mind!

I’m not exactly a big fan of mammography, being someone who got a false negative on her very first mammogram. I cannot believe that a false alarm is as bad as cancer…at least there is relief at the end of a false alarm. I live with the fear and stress of recurrence everyday…and this is after the stress and fear of having and being treated for cancer.

And I just love the last paragraph-yes, science needs to better define what treatment is really needed, or better yet, better DEFINE PREVENTION, where is the funding for that!