Something I Can Use

I know some of my views are unpleasant. I know I say thoughts maybe best left unsaid. And here I go again.

I have yet to become enamored of Twitter, maybe that will change, but it does lead me to articles I would not have found on my own. Nancy’s Point tweeted a HuffPo essay that I would’ve missed, because I’ve avoided HuffPo lately since every time I go there I just get pissed off. I re-tweeted it (because I’d rather mooch other tweets than compose my own I guess) and posted it in other various places. I’d read the post and agreed with it without giving much thought to the title: “Nobody Shaved Their Head For Me”. Even after reading it a couple of times I’m still not sure if the author even wanted any commiserating head-shaving; what struck me was the truthfulness of the main thrust of it: that big push of support in the beginning, and then the “aren’t you done with cancer yet” crap when treatment is maybe only partly over, and how that makes some friends fall away. Mets patients must drive certain people nuts, since they will never “be all done with cancer”. (Mets patients—fire away with this idea in the comments, of course.)

My own worst story in the “be all done with treatment” comment department came from a former co-worker during a lunch event. I was in the middle of Herceptin, maybe a week out from finishing radiation. She said something like “but you’re all better right, you’re all done, right?”, in her usual hyper, brusque manner. I remember saying no, and muttering something about being HER2+ and the length of treatment for it. But here’s the catch. Her own father was in his final weeks after a couple of years with Stage 4 cancer, so I assumed she understood a little about how cancer lingers. But then I think, perhaps she resented me for being only Stage 3, and for the fact I was expected to live. I cannot say this woman was a friend, but this scenario does show the complications when you have cancer, your friend doesn’t but has a parent dying of it. And so there is another dimension in the discussion of How Friends Fall Short In Supporting Us Cancer Patients. Too heavy for me to get into right now, maybe, but would love to hear thoughts!

But I digress, getting back to that HuffPo essay title. My buddy Greg commented that he never wanted anyone to shave their heads for him, although he agreed with the main thrust of the piece. This got me thinking, and remembering some stupid tidbit about Miley Cyrus shaving her head for cancer patients—I’ve no idea if it was for a charity or what. I did not comment on it then because it seemed beneath notice, but this essay title dredged up some thoughts I had about it.

Well, if you know the Cancer Curmudgeon, you can guess the verdict. I think it all a bit silly.

Sigh, yeah, I know it is a well-intentioned activity, and maybe if it is done as an event or project that raises money, that’s great (if the money goes to reputable groups, that is) and if folks become aware of some of the Crap That Comes With Cancer, well, I’ll never object to that! But the bottom line is that cancer is to be faced by the patient alone, and head-shaving in solidarity just does not impress me. Is being bald the worst part of cancer? For this breast cancer patient, is it worse than the loss of breasts?

No. Not for me. The loss of the hair in my nose I found to be far worse, and I won’t even go into the loss of other hair today. The nausea, constipation, radiation burn—a hundred times worse that being bald, and I had to do that alone, no solidarity opportunities. The surgery, the loss of a chunk of my breast including the nipple—a million times worse than being bald, and I did that alone, no one could do that for, or with me. No, I do NOT want anyone to go through any of that with me; I don’t wish the horrors of cancer on anyone. But at the same time, I don’t want anyone to think they understand surgery or the rest of these horrors of cancer by participating in a mere head shaving. That is why I find the whole thing so ridiculous. Sorry to point out the wedge between the sick and the well, but unfortunately, the sick do have to go where the well cannot follow sometimes

I prefer what is tangible, immediate, and practical. Yes, bringing food, providing a shoulder to cry on, taking care of housework and/or kids, these are practical, useful, solid supports. What else folks? Leave me comments. I had a great deal of support for which I am grateful, and it benefited me greatly, especially financially—VERY needed. No one shaved their head for me either, but someone did give me a ginormous bottle of powdered laxative (she is also a retired infusion nurse, so she knew what was needed, and she gave me the Neulasta shots, saving me from yet another visit to the money sucking cancer center—bonus! Told you I was lucky!). Now THAT is practical, useful shit. Pun intended. And yes, preferable to a damn head shaving.

These examples are what one person can do for one cancer patient. What about bigger ideas, for the community of cancer patients? I pose this question because I suddenly remember that National Cancer Survivor Day happened last month. I did not even know the day existed until I saw it on blogs…the day of! And from what I read, seems most were unimpressed with it. I’m still unclear as to what is supposed to happen that day. I see words like “gather to commemorate” and “honor their strength and courage”. I shrug, I guess it is fine to be honored, but I really need things like a better health care system, outrage at the high prices of medicine, and I need people to not just assume insurance takes care of it all—I’m sure many cancer patients know what it is like to battle the company when they tell you they won’t cover a procedure, many days after it already happened. I’m not prepared to argue the ins and outs of insurance and the Patient Protection and Affordable Care Act, because I’m not that smart about it. Those first two words are so important. I AM prepared to tell you what it is like to get rejected by insurance companies for having a pre-existing condition known as cancer. I AM prepared to tell you that if I get bad news in a few weeks at my six month check-up, it will be disastrous for me, and I can tell you all about that kind of fear. I AM prepared to tell you what it feels like to be an unprotected patient. Heavy issues like that cannot be solved with a feel-good activity like head-shaving.

A few other unpleasant opinions that resulted from my exposure to the interwebs yesterday: The comments on the piece. Oh yeah, these are why I stopped visiting HuffPo. I want to believe that comments sections are a great place for discussion, to see ways of looking at issues I have not considered. I’m really naïve for being a self-professed curmudgeon.

Wow, cancer patients versus other cancer patients. This is a sore spot that I will avoid now but am confronting in a future post. For now, suffice to say that there is no right way to do cancer, and patients who’ve found cancer to be a gift and are coping without this supposed whining—great for you, but some of us cope this way, some of us hope that by talking about the negatives we can improve them. You don’t have to read our “whining” posts, much less comment, why waste your time? I doubt the woman who wrote the HuffPo piece is going to suddenly have a change of view because of such tsk-tsking and “be positive” finger wagging. One way does not work for everyone (click here).

And wow, a non-cancerous person who pointed out that the patients’ friends are new to the whole “how to handle my friend with cancer” thing too. Well, yeah, but is that not why essays like this are good? So the conversation can get started, so these interactions can be improved when other young people get cancer? Isn’t talking about it best? Shouldn’t that be part of any friendship, why should cancer, or any tragedy—like miscarriage, death of parent/spouse, loss of job, paralyzing accident—be a changing factor? This is precisely why I liked the post so much!

Look, it may be difficult for those friends, but they still have health, which the patient has just lost. I get that it is hard to know what to do. I once WAS such an acquaintance that did not know how to handle cancer patients’ pain. But I learned the lesson the hard way (yeah, yeah, I know I say I did not “learn” anything from cancer, I changed my mind, so shoot me).  But my sympathy can only go so far; I reserve it for the cancer patient, now that I’m on the other side (in the land of the sick). And the cancer patient who wrote the piece IS telling us what patients need from friends—that is the whole point!!! Rather than going on the defensive, maybe listen instead? Better to listen to what she says than learn it the hard way, like I did, by actually getting cancer.

Having essays like this, starting conversations about this, should change and improve future cancer patients’ experiences. But no. Instead I see that usual reaction: cancer patients should just be grateful to survive, should stop complaining about cancer, and cancer patients are not allowed to want more, to want better.

To the supporting friends I say treasure your health, and please stop judging how the sick handle being sick.