I’m Allowed

A very special thanks to Tumblr buddy lux-fiam, who guided me as I struggled with this post, and to my IRL spoonie/fake psychiatrist/professor friend, with whom I fight The Overwhelming.  

For the people who say “thanks for this.”

This post is about allowing myself and encouraging others to do cancer any way we damn well please.

Just prior to starting this blog, and in the hazy days of bouncing back from the treatment side effects, I was in a bit of a depression. As I’ve mentioned in previous posts, I had no time or energy to find blogs while I was actively in treatment and working my ass off. During treatment I was not happy with the rah-rah/pink/warrior culture that was the most prevalent form of support available (except in the diagnosed-under-40 support group, thank goodness). After I made some life changes, I was pleased to finally be able to take some time and dig around and find blogs or articles that said some of the thoughts that were more like mine, and I began blogging to interact a bit.

Around the same time I found other blogs, I had an epiphany. I was at some event last autumn with other cancer patients and expressing some anger. A fellow attendee started suggesting stress reduction methods, telling me that I must “accept” my cancer and ended her pseudo-lecture with “you can’t be angry all the time.” I was just so sick of this type of lecture; it wasn’t the first time I’d heard words of that nature. And BTW, I don’t think people mean the dictionary definition of “accept” when they tell me to do that; I think they really mean “shut up and sit down”.

There I was, a 40-year-old woman, being talked down to like a 6-year-old, because, being, ahem, a couple decades younger than most in the room, I was the youngster, the newbie; never mind I’d finished treatment already. I was not a cancer expert (and still am not), but I wasn’t a novice either, for crying out loud.

Then it hit me—why was I even listening? I can be angry if I want! I probably thought those sentences in the petulant voice of the 6-year-old me, but the minute I did, half the anger just fell away. And it continues to fall away still. By giving myself permission to be angry, sad, frustrated, etc., I become less so, especially with each post I write. Sure, anger & other bad company are still there, but in a weakened and more useful way–they inspire and motivate me, to speak up or write these posts. Whether they should be posted and sent into the blogosphere—I’ll get to that in a minute.

While I get that people who say “think positive/cheer up” and that sort of thing are well-intentioned, maybe even trying to help—the result for me is the opposite. I just get more pissed off, because in my mind, my feelings are being diminished, dismissed, blown off. That never feels good. Cancer sucks, but being told how to do cancer sucks too. Part of the crapfest that is cancer is the culture around it (especially true in breast cancer), and the culture demands conformity, and as I’ve said in previous posts, I cannot do conformity. It is great that the normal, socially acceptable warrior/pink/rah-rah methods work for the majority of folks, I can respect that. I’ve seen people swallow negativity and wondered if they could achieve better peace by letting it out, but it is not my place to tell them what to do. And I don’t want to be told what to do/how to handle cancer either.

This blog is to escape and to challenge all of the bullshit in the warrior cancer/don’t worry, be happy world that just does not ring true for me. Here, I express my thoughts in my way, no matter if they are angry, or blunt, or whatever other unpleasant adjectives can be applied to them. Here, I express my experiences of cancer without (much) self-censorship. My professional life before 2012 was very constricting, so I wanted a space where the rules, limits, deadlines, ideas were mine alone. This is that space.

I think many would tell me I should keep my ugly thoughts to myself; I should stop sending negativity out into the universe, or blogosphere. But my challenge to that attitude is this: why is expressing negative feelings automatically considered a negative action—why can it not be viewed as a positive, “working through it” technique, which is kind of the point of a lot of therapy? How can bad feelings be turned around if not confronted, if they are constantly submerged, denied, hidden politely away? And most of all, why is it assumed that expressing negativity means the one expressing it is negative on the whole, and somehow not capable of experiencing other emotions (sometimes simultaneously)?

My blogs are not read by many, but the few comments I’ve gotten here or on the other blog tend to say “thanks”, and some variation of “I thought I was the only one who felt that/this is what I’ve been trying to say.” So while many hear/read thoughts that make them uncomfortable (which might be behind some of the “get happy” suggestions rather than a desire to really help), those same thoughts provide comfort to a few. I remember all too well last October not knowing what search terms to use to find people with opinions similar to mine, and I remember all too well how relieved I was to stumble, bass-ackwards, onto blogs that did express such opinions. So if my blog is just one more place someone can stumble upon and find relief, then my own victory over anger & company is nearly complete. I hope your victory can be found here too.

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I Don’t Want to See It

Subtitle: (and I probably don’t want to hear it)

Note 1: NSFW-picture of my bare, cancer-scarred breast below

Note 2: Controversial and offensive content—something about a woman writing about feminist issues makes everyone lose their shit. Please read all the way through including the note at the end if you wish to send anger or hate, which will simply be removed—it’s my blog, my rules

Continue reading “I Don’t Want to See It”

New and Improved!

One thing that continually irks me in Cancerland is the expectation that cancer patients are supposed to emerge from treatment a better person—healthier, better attitude, new respect for life, yada, yada. This issue pops up every now and again. I get mad, start a post, lose interest, trash post. But it has started to pop up with a monthly regularity now in a newsletter from a local breast cancer support organization, because they’ve started some kind of cooking class series with a name that implies cancer turns patients into new and improved versions of themselves, and that involves learning to cook healthier, you know, because clearly everyone who has cancer was living on fast food and soda before. (Yes, being sarcastic. Again.)

Several weeks ago, Nancy’s Point posted this great piece, After A Cancer Diagnosis, You’re A Better Person, Right?, and there was a lovely discussion that ensued. I was so happy to read it, and kind of thought this issue out of my system. Nancy talks about the cancer as a gift concept and how she is uncomfortable with that. She also mentions how this is yet another expectation of the cancer patient—to  “do” cancer right, as if cancer patients did not have enough to do.

But what else bothering me about this “better person” idea is that it gets too close to the blame game—as in, if I’m choosing to “do everything right” now that I’ve had cancer, does that mean I did something or maybe everything wrong before and therefore caused my cancer?

I was not perfect before cancer, and I’m sure as hell not perfect now. In some ways cancer has made me worse. I am much less patient and tolerant. And now I have a cancer-focused blog in which I write and share my rants with anyone who’ll read them. I’m sure there are many that would count that as NOT an improvement. Yet, I couldn’t, wouldn’t, have done this without cancer. (Hint: I like my blog and think it’s a good thing.) I documented in my post Punk Rock (Breast) Cancer that I once thought cancer was magic, that I would get this new, wonderful outlook on life and I’d handle things better. I learned that is not true real quick. Cancer just makes a person more who they really are—good, bad, ugly, and/or unable to behave in an appropriate manner while having cancer, or after it.

I often wonder if folks who throw themselves into this “new me” idea and action plan blame themselves for getting cancer in the first place, and hope they are not devastated if cancer returns. I’ve said too many times on this blog that cancer’s motto is “shit happens”, because sometimes illness is out of an individual human’s control.

I recently came into contact with a woman who had just finished treatment and was near tears as she talked about how she was improving her diet and exercise regime to do anything to prevent recurrence. I wondered if thinks she caused her cancer in the first place, since she is doing all these different things now. It was not my place to ask her, and I did not.

You see, I recognize myself in her. Oh, I talk a good game here in my various blog posts about how I refuse to blame myself for my cancer. But I’ve also admitted that I eat tomatoes now because of their cancer-fighting properties. Because in the center of me that is filled with self-doubt, I still somehow believe it was that hatred of tomatoes that put me in that damn infusion chair in 2010-11.

While I cannot judge how any other person “does” cancer, I sometimes think I must seem rather stubborn, or stupid, or both, in comparison to the “change my life” patients, for accepting that maybe I could not have stopped cancer from happening to me.

I’ve covered the diet-exercise angle quite a bit in terms of blame, prevention, and moving forward. And I suspect those things aren’t even the half of it. I’m too afraid to deal with the karma/philosophical aspect; as in if you shoplifted at age 5, is that why you have cancer now? (No, I did not shoplift, but I’ve done other bad things, who has not, unless you are some deity?) That is a whole other post, and I’ll get there someday. But I do know this, whatever bad things I’ve done, I’d already learned lessons from those things and improved (in MY way) because of them. I did not need the added punishment of cancer to motivate me to improve myself. It is sad to think that it takes something as dire as cancer to inspire self-improvement. I reject that notion completely.

Your Mom’s Cancer is Not My Cancer

There are only a million things to say about Telling Knots’ recent Larry Flynt piece, and all the comments, and I may or may not write more about it. But I have to tackle a weird thing first.

One of the defending comments came from a Hustler Club employee, and in her defense of the event (perceived as offensive by many) she states that two female relatives had breast cancer, one of whom died. Kudos to Telling Knots for expressing sorrow right away in response. Not that I am not sorry for the woman’s loss, but my irritation at this disclosure is strong.

This is not the first time I’ve heard/seen this kind of “my (relative) died of breast cancer, and my (other relative) is a x number of years survivor of breast cancer” comment; it isn’t even the first time I’ve heard/seen it used by a person participating in or supporting an offensive type of “ta-ta” event as a reason why the speaker is doing it. What is this phrase supposed to achieve? That because she witnessed breast cancer she has special understanding of what it is like to have it, and all the issues surrounding it? And that this is somehow a rational argument as to why the event should not offend patients, simply because it does not offend patients she knows? Does this claim of having relatives with cancer give her some authority?

But then I think, cool it with the perpetual outrage Curmudgeon, perhaps she is trying to be empathetic, and most people don’t even try to do this. So am I bitching because I think it is the wrong kind of empathy?

It would be absurd to always be annoyed if one person speaks up on behalf of another. I think back to a post I wrote months ago, where I, as someone who chose a lumpectomy, pondered unfair judgment made of women who chose the so-called “unnecessary” mastectomy. I think back to a recent awful IRL incident: “Well he smoked for soooo long,” an acquaintance said of a person dying of lung cancer. “And, what, so he deserves this then?!” I sputtered back angrily. Perhaps I was out of line to speak up; certainly I was, ah, a bit aggressive. I know I cannot speak for lung cancer patients, but it seemed wrong, in that moment, not to point out how awful it is (and always will be) to blame the patient, any patient, or to imply anyone deserves cancer. I remember once hearing an anecdote about an ovarian cancer patient wanting breast cancer patients to speak out for ovarian cancer patients, because there are so many more breast cancer survivors, given that ovarian cancer patients have a lower survival rate (and yes lower incidence rate as well…but that does NOT make the cancer less important—read this). What a horribly practical view on the part of the ovarian cancer patient, and totally understandable. So then I think, yeah, there is a need to speak up for one another, but not always to speak for one another, if that makes any kind of sense.

But on the flip side, none of us experience cancer, or even breast cancer the same way. Sure, many of us have lots in common, and that is how bonds are formed and so on, but there are differences. Heck, there are a great many breast cancer patients who have no qualms with Flynt’s event, or other slogans, events, and organizations I find so extremely offensive. Just because I’m offended, doesn’t make me right, I keep whispering to myself, unsuccessfully, because I can get a little self-righteous on that topic. I cannot speak for them and they damn well can’t speak for me. In fact, I am pretty certain most readers are not going to agree with my irritation here.

For me, “my (relative) had (some kind of) cancer” is going to have to go into my list of things I don’t want to hear as a cancer patient. I just think, if I went around saying I understood all about any kind of cancer because I know a few people with other cancers, it would be utterly ridiculous. As if other cancer patients did not already feel marginalized enough by the Big Pink October machine! Me, with breast cancer, the most well-know, probably the most funded and researched cancer, might as well just use the insulting phrase, “well, some of my best friends are (whatever type of cancer patients)”. As if I had some special insight into the issues or problems people with other diseases face; puhleeze, snort of derision. I can’t speak for people with other kinds of cancer, or other breast cancer patients, hell, I can barely speak for my own self!

Look, all I know is that however unfair I’m being, when I hear someone say “my relative had/has breast cancer”, all I want to say is, “that doesn’t mean you know or understand ME, or all the bullshit baggage I bring to my own personal case of cancer. I don’t have cancer the same way your relatives have it.”

That baggage we all bring to our cases of cancer is a topic for another day. But in the meantime…am I being unfair to those who drag out a faux cancer card, the “my relative has cancer” card for whatever reason?

National No Bra Day & Breast Cancer Awareness Month — OR — Please Put that Pink Can of Soup Down & Put Your Bra Back On!

Exactly.

cancer in my thirties

My “Where I’ve Been” post is still forthcoming, but in the meantime, I realize that I missed the opportunity to post on “National No Bra Day.”

I am reposting an article I wrote back on the unofficial No Bra Day during Pinktober (October — Breast Cancer Awareness Month).  The “official” fake holiday was actually yesterday, July 9th.

I see that you left a number of lovely comments on my M.I.A. post.  I will respond, but wanted to say “thank you” from the bottom of my heart in the meantime.  I am also looking forward to catching up with your blogs and all I have missed in the past couple of weeks.

My warmest thoughts & thanks are with you all…

——————

I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles…

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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.

source: rantingravingblog
source: rantingravingblog

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.