Tag: cancer

Post-Treatment Depression

I’ve been seeing a few graphics and posts on the internet about May being Mental Health Awareness Month, and a few blurbs mention cancer’s impact on one’s mental health. These pieces reminded me of how lost and down, maybe even depressed, I felt after I completed treatment. For me, the worst part was, and still is, the anger I had/have about cancer. I wrote this post last summer about an epiphany I had, at which point I began to improve a great deal. I continue to improve thanks to the therapeutic aspects of writing it all out on this blog.

That said, I am certainly not suggesting my method of getting better is one that anyone else should try. In fact, I’d say the opposite. However, the past year of dipping my toe into the realm of social media tells me that I am not alone with many of my views and feelings. So I re-post this for anyone who is new to cancer or the aftermath of cancer, and finds him or herself in the place I once occupied.

This post reflects one of my most adamant, non-negotiable views about cancer. Cancer patients must be allowed to feel whatever they feel—even if those feelings are considered negative. NEVER, EVER just tell a cancer patient to think positive to deal with cancer. It just adds stress, and in my case, I felt blamed. I don’t want any other cancer patient to feel that, ever. One of my turning points to accepting my feelings was reading Jimmie C. Holland’s “The Human Side of Cancer” (chapter 2, specifically). Another turning point is described in this old post.

I’m Allowed

Posted on July 29, 2013 by Cancer Curmudgeon

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.

 

You. Are. Scaring. Me.

Attention all medical professionals–doctors, nurses, especially those working in imaging facilities: your questions frighten me.

I used to think MRIs the most serious and nerve wracking of all imaging tests, but now I think ultrasounds are just as bad. I’ve had a few of those–first to find my breast cancer back in 2010, then all throughout treatment in 2011-12, to monitor my heart’s reaction to damaging cancer treatment drugs. The ultrasounds for the heart weren’t so bad; maybe because it was so clear to the techs why I needed the test. But my first breast ultrasound was pretty upsetting. Lots of questions, bringing in other techs to view the images, and just a general atmosphere of “something is wrong”.

The same things happened today as I had to undergo an ultrasound to find out what my worse-than-a-UTI problem actually is. As she applied the gooey wand, the first tech asks have I had many UTIs? (No, my very first was last September, and the second wouldn’t go away it seemed, and that’s how I wound up here.) She brings in the second tech.

I understand the second person is needed, in fact, I think my first tech was an intern who needs her work checked, even if she performed her tasks correctly. But I’m sure “Seinfeld” or “Friends”, or both, covered that issue of having something so bizarre or serious that other medical personnel want to see it. It was funny on those shows, but not funny in real life.

So the second tech begins waving the gooey wand and watching whatever images the inside of me put on that screen. “So have you had kidney stones?” Great, another question.

NO!

“Your questions are alarming me,” I said as matter of factly as I could.

“Oh we just have to tell the radiologist what you say–he’s gonna ask about it,” she chirps.

“But you are not recording  my answers,” I pointed out. Please, I cannot remember whatever I want when I enter a room without making a list these days. I do not expect any medical professional, with a million patients running around, to remember one darn thing. So, please, jot down my answer when you ask me a question, especially if you claim the info needs to go to another person.

Dead silence. Did not even bother to answer me.

I admit, I’m a naturally anxious person and I tend to let even simple things ruin my day, my week, my month. And a health concern is not a simple thing. So I’ve walked out of the hospital today completely worried. I’ve no idea when I can expect to learn about my results. Yes I have a follow up with the urologist in 6 weeks–but that is if all went well with this test today–and I don’t think it did.

It is possible I am imaging problems where there are none. Maybe I don’t like ultrasounds because the person administering the test is so close and I’m trying to “read” them. I cannot help myself. So when I’m asked if I’ve had recurring stones or UTIs, all I can imagine is that they are thinking stuff like: “OMG, her kidneys/bladder are a mess. How could she go so long without problems? Why did she not get to a doctor sooner?” And of course, as a cancer patient, even though no one has said “cancer”, I cannot help but wonder if they are thinking, “look at that huge tumor.”

In short, the questions scare me.

In addition to my own self-made panic, another, more logistical concern grips me. I realize that the urologist (or whatever doctor) writes an order for a test, but why is the other, relevant information not communicated to the poor sap who has to look at the images, interpret them and report findings back? Shouldn’t the people making and analyzing the images know what is going on with me? As in why on earth are they looking at my bladder and kidneys? What are the symptoms or concerns that put me in that room with them? Is this some kind of freakin’ treasure hunt or detective game? It’s as if the doctors are saying, here, look at this person’s organs and see if you can find anything wrong–but we’re giving no hints.

I confess this is a rather irksome issue for me. I cannot help but think back to my very first mammogram, that resulted in a false negative. I know, I know, I should let that go–after all, the tumor was discovered just a few weeks later, and I lived, so I should shut up about it. But humor me. I went to get that mammogram not because I had any symptoms, but because I had a strong maternal history, because my aunt was just diagnosed at age 50–a below average age for breast cancer. I was 38, below the current recommended age for getting annual mammograms. I was being proactive. So did the radiologist see my age, know the family history, and just blow off that big white spot as density, when it was really a tumor anyway? Or did that information not reach him, and he just saw 38 year old white female with no symptoms, and maybe he thought–oh they always have dense breasts, no worries? And please know, the tumor was not hiding IN the white area, it WAS the white area. As mentioned if previous posts, I have trust issues when it comes to tests and such, and this is why.

I know it would not change anything to have been diagnosed a few weeks earlier. What happened, happened; and I am still here. Maybe I’d be a little less angry, who knows? I am curious to know if background history gets communicated to imaging personnel, and if it is factored in. If it isn’t, um, is there a petition I can sign to change that? Maybe some patients think all that information sharing between doctors and medical facilities is invasive. Not me–I think of the very thick file that followed me at the infusion center, I think of all my discs containing images from various facilities. All of that is me, my story, and I have no idea what parts are relevant for this moment, this particular problem. Is that not why my records exist…in recorded format?

So, again, to those doctors, nurses, imaging techs: asking questions–and worse, not answering them, and how you behave, even your face, I’m over analyzing all your actions. Maybe most patients do that, maybe not. As a cancer patient, well, these situations take on a higher terror level for me, and I’d guess many other cancer patients. It doesn’t matter if YOU don’t say cancer–I’m thinking it. And even if it isn’t cancer–well, I’m in a center, getting a test, I’m thinking the worst. Please understand that.

And I walked out of the hospital today frightened.

Gumball Machine

I’m gonna take that infamous Forrest Gump quote and tweak it and turn it on its head: life is NOT like a gumball machine. I cannot just put something in (money, effort, etc.) and expect a specific outcome.

Over two weeks ago, I wrote and posted Unintended and Unwelcome Interruption, about why I’d not been writing or even commenting much in the blogosphere. Namely, I was struggling with computer issues and some urinary distress not to be blown off as a mere UTI. By then, those issues had been going on for a few weeks. And they did not end with that post. So yes, I’ve still been spotty about posting and reading new posts by my favorite bloggers—well, I can read them sometimes, but only able to “like” or comment at random moments according to activity and what machine was working at the moment.

The fall-out from the past two months is some unpleasant understandings. I’m not saying cancer was easy for me, but I knew, and realized all over again, I was lucky in that things went according to plan. The oncology team suggested, and we all agreed, let’s do chemo to shrink the tumor, then remove what it left (lucky lumpectomy!), then do radiation. Except for a few hiccups, as in a misdiagnosed Staph that delayed radiation, all went according to the plan, the timeline. Yeah, it took over a year—thanks to being HER2+ and needing a year’s worth of Herceptin—but everyone input the required efforts and actions, and the expected outcome was achieved. Again, I know that does NOT describe the cancer experiences of too many other patients, so yeah, I was lucky.

That does NOT describe my recent weeks.

No, I’ve fought and fussed with multiple trips to multiple computer repair services. A postponed appointment from the urologist before I even met him caused me to have an utter meltdown. I pride myself in applying processes of elimination and deduction to figure out solutions to problems. I do ABC and expect XYZ—and that just….never happened over the course of the past few weeks. If I were to play a film of myself and my recent behavior, I imagine it would look like someone running full steam into every surrounding wall and getting destroyed.

IMG_20140510_094633730

I’ve always known I have some issues with chaos and control, and have long planned to write about them, especially since cancer and control (or lack of) have left scars on my mind. My friend, who deals with chronic illness, and I joke about rearranging the sock drawer. When life events go awry and we know we cannot do anything about the events, we reorganize something, like the drawer of socks or other clothing. I like socks. I will group them all by when I wear them seasonally. The next time I feel out of control, I go and group them according to color and/or type. You get the idea. My life will be falling apart, but I can make the socks behave.

I think I’ve turned a corner, my issues seem on the road to being resolved. But, hey, I thought resolution was nearby two weeks ago with that previous post, and look what happened. I chastise myself to not count the chickens before they hatch. Still waiting to pick up one laptop, still waiting for medications and a test that could confirm what the urologists thinks is wrong—and I hope it is as simple as he thinks—as in NOT cancer.

But I am breathing a little easier. And I’ll leave the drawer full of socks alone today.

Guest Post At CureDiva

I’m honored to have been asked to write a guest post for CureDiva. It is a TMI post, so beware. But I hope it gives everyone a small chuckle, and opens a different discussion about all that hair loss. And yep, that is a picture of me, or rather my hair. I actually have more grey hair than it looks–not sure how I managed to hide it! Oh well, beginners luck in photography, perhaps?

It’s called Hair Loss. No, Not THAT Hair. Hope you enjoy.

Cancer Curmudgeon Hair

Unintended and Unwelcome Interruption

I have not written/posted recently, and my commenting and reading others’ posts has been limited of late. This is not by my choice. I hope to get back into it soon.

I tend to let myself get distracted, and I tend to let things get in my way and stop me from moving forward. In little ways and big ways. “Let me get through college, and I can begin life,” I once thought . “Let me get a better job, and I’ll think about that aspect or next step in life.” Not wanting children, I did not have that clock ticking in my head, and I’ve taken too long with other things I wanted in life. What is that cliché about life happening while you make other plans? Yeah. I know this about myself and am certainly trying to change my ways. So, I keep thinking, let me clear this thing, or these things, up, and I’ll get back to my routine. Well, that is bad thinking.

My first, current major obstacle is a new health concern. While it does not seem to be cancer-related, it is still a serious concern. A UTI that just would not go away is not really a UTI. But I still have troubling symptoms and now need an urologist and more tests. I’m not happy to say the least. Logically I understand having cancer that one time does not give me a free pass on all future health concerns. I will likely encounter heart disease, blood pressure medication, and kidney troubles—all more common in my family than cancer—before I die. I just don’t want them yet. Can’t I just breathe free a couple more years please?

I’m on pain medication which makes me fuzzy—a big obstacle to writing. On top of that, of course I want to obsess and worry about the upcoming doctor visit. I have managed to avoid reading up on likely diseases on the internet—and that is not because I have great willpower (explanation coming, just keep reading). So instead I fixate on preparing for battle with this new doctor.

I’ve struggled with this not-really-a-UTI for a month now and so my frustration is high. My cancer experience left me very distrustful of doctors, and I feel like I’m in a bad place again. First, as this blog has documented, a very large tumor that appeared on a mammogram image was failed to be diagnosed. Then, in the middle of treatment, I picked up Staph during my lumpectomy. The PA that worked at the cancer center where I was treated, who is supposed to diagnose and treat all the cancer patients and our whiny complaints about side effects, really dropped the ball with me. She kept insisting I had shingles, when a quick internet search told me my symptoms were not in line with that illness. The whole time I was supposed to be prepping for radiation—being mapped and marked, and instead I was delayed in moving forward with treatment. I kept walking in to the center every day—the medications prescribed were not working, when I was told that my rash should clear up in a few days. Finally, after about the fourth or fifth day I was in the examination room again, pointing out that the rash was actually getting worse and that PA walked out on me, claiming I’d not given the meds enough time. The radiation oncologist happened to be in the room, and took a sample of the pus coming out of one of the bumps (it looked like my torso had come down with severe teenage acne). Few days later, well, what do you know? Staph. The PA did not even apologize or admit her mistake when she told me over the phone my real diagnosis, and to get to the pharmacy for my new, correct medication.

I will never forgive her for that. One would think the false negative mammogram would’ve taught me the need to be alert, to advocate for myself as a patient. I think the cancer diagnosis itself rocked me so hard I did not learn that lesson then. But I learned it hard the day I learned I had Staph that will pop up in a rash on occasion, forever. Medical professionals are NOT infallible and make huge, sometimes horrible mistakes. During cancer I was ashamed to think I’d not known my body well enough to know something as major as cancer was wrong. I thought that made the doctors think me sort of stupid. Never again. I know my body now. I push and advocate hard for myself. I NEVER enter a medical facility without my “cancer bag” full of discs, documents, and my laptop to take notes. I gird my loins and make the medical professionals listen and HEAR me. I have to. My experiences have taught me this.

 

Friend or Enemy?
Friend or Enemy?

The second obstacle causing my blogging absence makes me think I am crazy. In the good ol’ days, the classic Murphy’s Law problem was: car makes weird noise, owner takes it to mechanic, and car stops making the noise. The modern version of this scenario is played out with a laptop. My primary, work and fun laptop keeps, just….disconnecting from the internet at random, or at inopportune times. Right in the middle of writing a comment, or a long email. And all that was written is just gone. Forget researching my current medical concerns online. I keep hauling the machine to a local computer repair business. The damn thing is fine they tell me. They played online games all day with it, and it never disconnected once. Must be the ISP or network, they tell me. Except it isn’t, because my crappy, tiny backup laptop I use to access my business documents connects just fine. So does my smart phone. If an ancient piece of crap, mini-laptop and brand, spankin’ new phone are connecting, then it just ain’t the ISP. I report this to the computer fix-it guys and I get the glassy, “oh, she’s crazy” look.  I only hope this post I’m writing makes it onto the internet. We’ll see.

I love the internet. I see so many wellness and airy-fairy blog posts encouraging folks to disconnect for a few days. Modern society, kids especially, these articles claim, we just spend too much time on electronic devices.

Hogwash, I say. I spent more than the first half of my life not connected to the internet. I love it here on the interwebz and I’m not leaving. Here, I laugh my head off as Justin Timberlake offers me a special holiday gift in a box. My president is Kevin Spacey/Frank Underwood. My spiritual leader is George Takei. My pets are Grumpy Cat and Moon Moon. I was having a rotten day a few months ago and was roaming my Tumblr dash and found a disco version of the “Jaws”. If I’d never had stumbled on that, I wouldn’t know I needed it, but I know it exists now, and yes, I need that stupid version. I also love to access the recoding of Freddie Mercury’s isolated vocals of “Bohemian Rhapsody” whenever I want, because for me it represents one of the truest forms of beauty I’ve ever experienced. No, I will never disconnect from the internet for wellness. For me, wellness IS the internet.

So writing a post has become tricky. I can write it, but when I go to post, well, whoops—off the internet my laptop goes. It seems to be doing better today, so I’m risking a post. If you are reading this, I was successful and will resume my rant-y posts as soon as I can!

 

Perfect


I will never call myself a ‘cancer survivor’ because I think it devalues those who do not survive. There’s this whole mythology that people bravely battle their cancer and then they become ‘survivors.’ Well, the ones who don’t survive may be just as brave, just as courageous, wonderful people and I don’t feel that I have any leg up on them.

 

— Barbara Ehrenreich 

Turned Up To 11, Always

Marty DiBergi (Rob Reiner): Why don’t you just make ten louder and make ten be the top number and make that a little louder? 

Nigel Tufnel (Christopher Guest): These go to eleven.

From “This Is Spinal Tap”

This is just another hissy fit post, similar to Did You?, but sillier. Well, sort of. I’m also serious, but don’t take myself too seriously.

In Did You?, I listed some questions people ask a cancer patient to find out if there was something the patient did or didn’t do that caused the cancer. That post is me complaining about the way folks love to blame the patient, so they can assure themselves that by doing the opposite actions, they will be safe.

But what is troublesome is that some of the items I listed that might cause cancer are pleasurable. For example, drinking, smoking, getting a tan, are indulged in for fun by some. And I’ll admit I find great pleasure in sweet foods, like chocolate and cheesecake.

My point is, with all the “advice” tossed off in the media and from well-meaning, but-won’t-shut-up-with-the-advice types, I sometimes twist it in my head into: never have any fun—it causes cancer or other damage. I get overwhelmed sometimes and grumble to myself, great, I think I’ll just ingest a leaf of lettuce and a gallon of water each day—nothing else, and maybe that will keep me safe. Except it won’t, because the lettuce was probably treated with some chemical and can I even trust where water comes from? Well, I suppose if I pay an arm and a leg for it.

I could extend the list of killer/fun behaviors, and extend the list of negative consequences to health problems beyond cancer. Nearly all the cancer-causing items cause heart or other disease. And I’m causing myself all kinds of harm by constantly being attached to some electronic, internet connected device. Hell, even my mobile has started to berate me.

I attach a speaker to my mobile via the headphone jack, and as I turn up the volume, a message appears about prolonged high volumes and headphones causing hearing loss (“you dumbass,” I wanna scream at the phone, “other things get hooked into the headphone jack, not just things that go directly into my ear!!”).

But the truth is, I already have quite a bit of hearing loss and it is my fault. As those who’ve read other posts on this blog o’ mine will know, I write a bit about music, and my tastes run to the loud and aggressive—lots of screechy guitars. I love punk, grunge, hard rock, hip hop, all kinds of ear-splitting stuff. I’ve loved that sort of music for over half my life and don’t foresee a change.

I’ve been going to concerts to see the bands that make this music for about 20 years now. Well, I haven’t gone much in the past ten years. But I did see quite a few bands, in small places, where loud music reverberated off the walls. And no, I did not wear anything to protect my ears, as many musicians and concert attendees do these days. So, that is how I’ve caused hearing loss. That, and turning it up loud in the car, windows up, singing along, and I’m told my music can be heard as I pull up in driveways. For me there are few pleasures better than the music being turned up so loud I can feel it in my bones.

I have difficulty on telephones when people do not speak clearly or speak too quickly. And why do so many people insist on talking to me when I am far away, walking away, or running water or doing some other noise-producing activity? I cannot hear any of it!

So, all this said, it would be reasonable for me to have learned a lesson, to turn it down a bit.

No.

sdbn.org
sdbn.org

I’m so tired of doing the “right” things. I am so tired of an extreme healthy culture that I feel like I cannot have any fun doing “bad” things. Yeah yeah yeah, exercise is fun, and I’m sure there are many healthy activities for me to find—please, don’t send me suggestions. Because nothing can replace as good as loud feels for me.

I have, of course, reduced some of my indulgences—I drink much less, eat better, exercise more, since cancer. I still get annoyed when I see health or money saving advice start with: quit smoking and give up soda (carbonated beverages, whatever they are called in whatever region). I never smoked and hate soda, and beer for that matter. So I cannot get a quick obvious start to getting healthier or saving money. And as much as I say I love cheesecake, I love veggies just as much, and have always eaten quite a lot of them, so the veggies are already added to the diet—they were always there. Just not at the same time as the cheesecake, ha ha.

I’m going to keep turning my music up as loud as I want. I will go to my grave—whether it is cancer that sends me there or something else—deaf as post and I will not care. Please don’t take this one last bit of bad fun from me. I need it to keep the fear cancer has introduced into my life at bay.

“Something else is hurting you – that’s why you need pot or whiskey, or screaming music turned so fucking loud you can’t think.”  — Charles Bukowski

Did You?

Did you smoke, and for how long?

Did you drink, how much, how often?

Did you have kids?

Did you use a tanning bed?

Did you even try to lose weight?

Did you take hormones or the Pill?

Did you eat enough blueberries?

Did you eat tomatoes?

Did you eat meat?

Did you buy organic?

Did you eat a lot of sugar?

Because if you have cancer, you did it to yourself.

Several days ago, Dr. Otis Brawley of the American Cancer Society wrote on some news site that most cancers are preventable and made bullet points of the usual laundry list of prevention measures. He did not say that everyone, or me personally, Curmudgeon Q. Cancer Patient, had brought cancer upon themselves/myself. But I still feel a zing when I read or hear this sort of thing. I am still trying to figure out why I get that zing.

Now, I know should avoid comments sections on mainstream news media sites. They cause me much stress—another cause of cancer, naturally. So why read them? Well, it does give a glimpse into how and what people think. Of course one person whose husband died from cancer protested the idea her husband brought it on himself, and another responded along the lines of: all these damn cancer patients are too sensitive, this article isn’t blaming them.

Ah there is the rub. Why are we sensitive? Well, because we get asked those questions I just listed at the start of this post, and more. A lot. Or at least I did. And yes, I brought some of the paranoia on myself, every time I looked at a magazine cover while waiting in line at the grocery store, each one touting some food I hate (fruits, including those cursed tomatoes) as a sure fire way to prevent cancer—and it usually says “prevent”, not “lower your risk”, at least on the cover, the story changes a bit on the pages inside.

Yes, I know, breast cancer patients are not blamed for their situation as much as lung cancer patients or people with heart disease. I just read another article about the latest mammography mess in which the journalist pondered how women think of heart disease as a result of bad behavior, while breast cancer is considered something bad that happens to women. I really have a hard time with this particular misperception that I see in articles more frequently than I’d like. Because from where I’m standing, when I got asked those questions, there was a flicker of a suggestion that this cancer did not just “happen”, but rather, I’d engaged in actions or non-actions that resulted in my getting cancer. I think that could be called blame.

I constantly see pieces linking smoking, and especially alcohol, to breast cancer. Yes I see it more than average folks because, you know, I had breast cancer, so I hone in on these items. But I am sure a few others are seeing it, and it is getting lodged at least in the subconscious. Well, OK, maybe not, given that most local breast cancer fundraisers in my small town are sponsored by bars and other businesses selling alcohol, and yes, alcohol is generally served, never mind all the chatter about alcohol causing breast cancer. Ugh, that is a post for another day.

It’s just that, for anyone to think most people, even on subconscious, unspoken levels, are not blaming the cancer patients, any cancer patients, for getting themselves into their fixes, it’s just…naïve. We must be blamed, we must endure those insulting “did you do this, did you not do that” questions. Some folks MUST blame us, because it is the only way they can assure themselves they’ll be safe from cancer. Anything they do that is different—eating, drinking, having kids—well, that is the get out of cancer free card, isn’t it? If only that were true.

What will it take to end the blame the patient game? Maybe cancer patients are too sensitive, but there is a reason. Too bad sensitivity isn’t transferable to others in need of it.

Maybe They’ll Listen This Time—Yeah, Right

There are so many issues worthy of discussion raised by the recent Keller mess. And most of the issues are being written about very well, and hopefully meaningful discussion can happen. But what makes me doubt it is that some of the issues are not really all that new to cancer patients. So, I am re-posting something I wrote a few months ago that is directly related to one aspect of this drama, before the drama even happened.

I know other bloggers have also written about this; I’ve seen such posts, I just cannot remember when or where I read them, so I cannot link them. I can only re-post what I wrote.

The main conceit of Emma Keller’s article is that she raises the question of oversharing via social media, seemingly without looking to see if this issue has been raised in cancer social media before. Does she really think cancer patients have not thought about this, written about this before, that she is the first person to consider this? (Eye roll.) How arrogant are these article commenters that tsk tsk cancer patients with their “if you make your illness public, expect controversy” type of criticisms? Very arrogant. I REPEAT: CANCER PATIENTS HAVE ALREADY THOUGHT ABOUT THIS, YOU ARE NOT TELLING US SOMETHING NEW. But of course the general public does not think cancer patients are able to think of any issues on our own—they must still think we do not research our disease and treatment options, given all the unsolicited advice they feel compelled to give. (Read the first paragraph of this re-post, and also see here for more on that.)

One last thing. It has been implied that cancer patients who share personal items so publicly must think we are immune to criticism because of our cancer, like we think our proverbial cancer cards give us a free pass. That would be an interesting thought—IF what the cancer patients were actually saying was being discussed. But given that not only Bill Keller, but MANY people, so totally and utterly got Adams wrong by calling her the standard bearer for warriors when the complete opposite is true, how can this criticism even be true? One cannot be criticized for something that one absolutely did not do!

Real discussion can only happen if listening (or fully reading everything, not “perusing”) is happening. All I see are people wanting to confirm preconceived notions. If some folks would read and listen to how cancer patients are debating the issue of using social media to discuss such personal matters, maybe they could cure some of their ignorance. Being anyone from an allegedly highly professional journalist to a person who thinks they are smart enough to make a comment does not grant immunity from being called out on the unwillingness to shut up, listen, and learn.

Original post link provided in title, to read comments if the reader cares to do so.

If You Don’t Approve of Preventative Mastectomy Don’t Get One

Posted on September 1, 2013 by Cancer Curmudgeon

When I recently came across yet another criticism of “unnecessary preventative mastectomy” I reacted angrily. It was on HuffPo, and the article wasn’t even about the preventative mastectomy or the decision to get one so much as the author describing her husband’s reaction, but of course a commenter started in about “unnecessary mastectomy”, thinking all these BRCA folks with their 90% chance of getting cancer just need a little vitamin D. Puhleeze, so tired of this nonsense—does it not occur to anyone that maybe the author did research, already knows and considered whatever tiny-ass piece of advice someone clearly without experience and knowledge—like that particular commenter—could offer? OK, tiny subsidiary rant over.

I am so tired of people judging others’ medical choices. If you don’t like preventative mastectomy, don’t get one. No one, not even other breast cancer patients, let alone anyone else, has any idea of the millions of little details of another’s situation, medical and otherwise, and therefore are never in a position to criticize the choices of others.

But then I think: by sharing her decision (this blogger had previously written about why she’d had the procedure) and writing about it—and by extension, when any of us who put our stories on the internet—are we inviting this judgment? I’m not suggesting anyone stop sharing, not by a long shot. While I’d like to shout at folks like the commenter, “how are any of our choices impacting you—it’s none of your business,” did we make it public business, by, ya know, sharing our business? She put her story out there and she should not expect only bravos and applause, nor should I, nor should anyone. People judge each other all the time, but do we have a reasonable expectation to have them shut their mouths, not share those judgments, when we publicize our choices?

I’m actually not asking a rhetorical question here.

As I consider this most recent fuss that has come into my line of vision, I revisit what makes me write my story and show my pictures. I put my story and my pic here and the complimentary comments are great—I do feel good when I get that support. And it hurt to be told one time in comments on HuffPo that ugly pictures of breast surgery scars should not be posted on the internet (this was during the Facebook kerfuffle).

I certainly am not providing advice about medical choices by sharing my information (see my About page), nor do I assume anyone else’s information or choices will work for me. The more I haunt the internet, the more I think every single case of breast cancer is totally unlike the next. But I like hearing about other options, about other experiences, and other opinions—it helps me think and process my own experience, my questions. For example, I know most breast cancer patients choose reconstruction.  In fact, I’m starting to feel like a freak more and more for just going with a lumpectomy. It seems everyone I read on the blogs had at least a mastectomy, usually double. I wanted to show–hey there are other options and that’s ok—we all don’t have to do the same. So I present my choice, how I got there and what happened with it, as just another experience or example, and maybe someone can benefit from knowing about it.

If I inspire, great, if not, great. I’m sure the folks who complained to Facebook about the SCAR project would just accuse me and my posting of my nippleless breast of being some attention seeking exhibitionist. If people think that, I cannot help it. All I know is, it took a long time for me to find images that matched what happened to me (as I’ve mentioned a few times on my blog, I was clumsy at searching cancer issues on the web for a long while). So the more photos of breast surgery examples there are out there for people to find, and if they can help someone else who is just now going through it, then good. I remember how alone I felt, and I remember the relief I got from seeing images similar to mine, when I finally found them. That is why I do it, it is that simple.

I think back to the woman mentioned above who criticized the influx of breast surgery scar photos on the internet, and her comment to me in which she claimed that if she ever got breast cancer she would deal with it with a positive attitude and not post her pictures on the internet. Funny, I once thought I’d never post pictures of myself either. It is impossible to know what you will do in any situation until you are absolutely faced with it. The blogger inspiring this post was indeed BRCA positive. I got the test planning that if it was positive—not realizing how unlikely that would be—I would just get a double mastectomy and be done with it. It wasn’t, obviously, but even now, I don’t know for certain that if I’d gotten a positive result I would’ve gone through with it. I cannot possibly know that unless it actually happened that way. I literally do not know what I would do in any other situation other than the ones I actually faced. If I cannot even know what I’d do with one little situational change—how can anyone have the temerity to call it an unnecessary mastectomy if they’ve never even been close to such a choice? And even if they were close enough—then they should know how awful the choice is, and why not judging others’ decisions is so important.

Ultimately I think it does not matter if the HuffPo blogger, or me, or anyone, posts our story for anyone to read. If I’d just kept the info quiet, restricted to a few IRL people, I would expect none of those people to tell me if they thought I was right or wrong in my choice—I may have shared my business but it’s still not their call. What does it matter if 15 people, or 1500, or a million people know what I did, no one has the right to question my judgment on medical decisions that impact me alone.

Oh I’m Sorry, Is MY Life-Threatening Cancer Making YOU Uncomfortable?

There have a been a few times comments on my posts have made me think and made me want to expand on the idea into another post. I try to respond to all comments as best I can, and the discussions can be quite good. But I think maybe some folks don’t read the comments sections on blogs, which is a shame; I’ve found some of the best ideas, thoughts, and conversations in comments not only  on my blog but others. So sometimes it is a good idea to write a brand new post. I just haven’t done it before because of time constraints or I was on to some other topic, or I was just being lazy.

Swoosieque just made a comment on my previous post that made me think of an idea that is a small part of one of my motivations for blogging. This one motivation—among a few others very important to me—is to challenge the status quo of cancer culture and conversations. (Pssst, for those new to my blog, I don’t like Pink and all that rah-rah that goes with it, and I’m alone and surrounded by it in my rural area, so online, this blog, is a great way to rebel when smacking my head against the wall in dealing with people in real life gets to be too much.)

The previous post addresses one of the dumbass things people say to cancer patients. As I mentioned in that post, I’m not really interested in that topic anymore; I guess it just doesn’t bother me as much because there are so many other irritating aspects of cancer culture. But Swoosieque’s comment made me realize that maybe the dumbass things people say is a small part of the bigger picture, so I’ll address that big picture using the example of these dumbass things.

Swoosieque talked about (seriously, click over there and read our discussion) how she too was uncomfortable and did not know what to say to a person with cancer 27 years ago. Her larger point is about how, until she got cancer her own self, she just did not know what to say to cancer patients. I KNOW I’ve said dumb, maybe offensive, things to cancer patients my own self too, before I got cancer, and I wrote about it.

But that’s not really what I want to talk about. She pointed out that back then, cancer was not spoken of. That got me thinking. She is right, one of the points I hear in cancer conversations is that the taboos around cancer, especially regarding breast cancer, are now broken. We have indeed, as a society, come a long way.

But we have not come far enough.

I truly dislike it when anyone uses the argument or example of how “breast cancer used to never be spoken of, and look at it now”. Folks will point to all the damn Pink as evidence of how far we’ve come. While I dislike Brinker (and Komen and Pink), I agree with the sentiment behind a statement she once made, something along the lines of until breast cancer is eradicated, there is not enough Pink.

Well, I’ve had enough Pink thanks very much, (and I capitalize Pink to include the ribbons and all the party culture and whatnot it represents which I so dislike), but she is right—the conversation and research cannot stop just because we’ve come this far. Just because everyone is so “aware” of breast cancer (don’t even get me started on that topic today), what, we’re all done, problem solved? Excuse me, I still got breast cancer and am likely to get it again—problem NOT solved. While it may be impossible to cure cancer, at least any time soon, that does NOT mean attempts to do so, or at least to prolong life, improve effectiveness of treatment, make treatment less miserable, and so on, should just cease because, hey, look how far we’ve come!

I am of the same opinion regarding the dumbass things people say to cancer patients and the dumbass things they want to hear from cancer patients. Sure, cancer, breast cancer especially, is an acceptable topic even in TV shows now and maybe it wasn’t 20 years ago—but c’mon—that was 20 years ago! Society still cannot seem to get past a few tired old clichés. And I don’t know about others, but I heard the same cliché repeatedly over my treatment timeline, from people I barely knew AND from family members, multiple times from the same people, which kind of made me think everyone was being insincere. But I am sure they were being sincere. What I think is more likely is that while cancer is no longer taboo, it does not mean everyone is all that comfortable with it either. If they were, maybe we could get real and honest, and there would be no need for blogs, essays, and books about all the dumbass things people say. Because real conversations would be taking place, not trite phrases gently spoken to cancer patients so often that we can actually make a list of them (no I don’t have a list, I lost interest, do an internet search for the aforementioned blogs, essays, and books).

I remember once reading in a comments section (see what I mean that the best stuff is in comments?) of an essay that us cancer patients should not be so harsh towards our friends and others, because they too are new at dealing with it. I’ve addressed this before. And I get it, like I said above, I was one of those idiots who did not know what to say and got a harsh lesson by getting cancer my own self. This is one reason I’m driven to talk and write about it. The only way to get past this uncomfortableness is to start a conversation about it. The essay in question addressed how long cancer treatment takes (months!), and how friends and others tend to fall away because they, especially younger people, do not understand or have no experience with serious, long-lasting illnesses such as cancer. The essay introduced the topic, maybe the writer hoped to have a conversation that resulted in change, but that didn’t happen.  Instead of listening, some commenters got defensive. Yes, like I said, I was such an idiot once, so I will try not to be too harsh when I say that I can only understand the “I don’t know what to say” predicament so far. Yes it is hard to know what to say, how to act, but cancer is harder. I want to scream at the commenter, “Oh I’m sorry, is MY life-threatening cancer making YOU uncomfortable?” How can we ever get over this discomfort unless it is confronted?

I’m tired of the “well at least we’re talking about it” and the “treatments are much better now than they were” excuses. I’ve said many times and I will say it a million times more, I AM grateful for all the funding and awareness and so forth that kept me from dying because I was lucky enough to get cancer now, not 30 years ago. But my cancer experience was hardly cushy, and just because we’ve come this far, we should NOT stop. I want more and better (see my About page).

moar-cat

Remember how awesome TV dinners were—pop them in the oven for 45 minutes, go do something else while it cooks and presto! Dinner is served with little effort. Then along came microwaves. I bet women thought those hand operated washboard things were waaaay better than washing clothes in the river, and now we’ve got washing MACHINES. Whoa! Yes, I’m being absurd, but to make a point. There is always a better way and being satisfied with the status quo just leaves everyone in a rut. I want out of the rut.

Science IS still working on “better” for cancer care, why does society and culture lag behind? Sure, sure progress in culture may be objectionable to some. Thirty years ago Madonna was lewd at the VMAs and now we got Miley making Madonna look tame. Some would say that kind of cultural progression is not so good. I don’t care about that. I do care about bringing some honesty into the societal conversations around cancer, breaking out of the mold of overused clichés, only spewing positive, “inspirational” crap, and the idea that Pink is effective. I will continue to push to get real.

So dear Swoosieque, I thank you for making me think—I bet this did NOT go where you thought it would! Does not have much to do with what we were talking about, I guess, but good all the same. You inspired me to think differently about and address something that bothered me that until you came along, I just couldn’t put my finger on it. I think I said somewhere in our chat I’d write a short post. HA! Like I could ever do that. I remain, as ever, yours truly, the very long-winded, Cancer Curmudgeon.