I said who put all those things in your head

You know it’s funny, every single time I read one of your posts I think, damn her, how come she didn’t get chemo brain, she still has her fucking edge. While my brain has gone as blunt and squishy as a giant sea sponge. Plus my fingers are so numb I can’t type worth shit, and four days out of five I forget that I even have a stupid blog to update.

Anyway, add to your list of woes, at least for those of us with less than complete insurance coverage, the post-cancer financial disaster scenario. I’ve not only lost my income, I’ve lost my entire life savings, plus my house. And even though I’ll never ever again be eligible for affordable private health insurance, I still don’t qualify for any kind of government aid. I’ve fallen through every crack in the system. Yet somehow everybody expects that I should be bouncing “back to normal” by now. Well, maybe I’m not dead but any chance in hell of ever being “normal” again sure is.

As for capitulating, it’s only lunch time and already today I’ve chirped to seven people that I’m doing GREAT!

That fucking sucks. I like this poem by Robert Creeley at moments of extreme suckage.

“I Know a Man

As I sd to my
friend, because I am
always talking, — John, I

sd, which was not his
name, the darkness sur-
rounds us, what

can we do against
it, or else, shall we &
why not, buy a goddamn big car,

drive, he sd, for
christ’s sake, look
out where yr going.”

I think we need to update “How are you doing?” Wouldn’t it be more honest if we had a social nicety that asked:

“Do you need to vent to me about the sucky thing you’re going through?”

Then we could say “yes” or “no” and be honest.

Twisty, vent away. And I’m with you on the need to take care of the fallout from the medical system outside the medical system.

Sniff. Chocolate? Bunnies? Fluffy clouds? A hug?

Have any of your doctors mentioned anything about post-surgery depression?

http://www.med.umich.edu/depression/condition.htm

It happens a LOT. Depression with cancer, AND depression with surgery. Since you’ve had both, I’d be surprised if you didn’t have CLINICAL depression, not just “the blues.”

Something about f-ed up neurotransmitters. It’s all very confusing but apparently they need each other and if just one is “off” it can cause a brain avalanche. A handful of sex hormones (progesterine being one of them) synthesize in the brain and can negatively affect GABA and serotonin levels. Since many (all?) of your sex hormones recently went on a permanent vacation with your ovaries I wouldn’t be surprised if your hysterectormy is at least partially to blame. Low serotonin levels result in the very things you describe on your list (except the flappy bladder and the bra size).

I’m of the very strong opinion that (my Calvinist upbringing notwithstanding), this condition can’t be cured with a stiff upper lip,’cause your brain ain’t minding the store, you see? When my serotonin levels tank I feel a LOT like your list, even though I have no REASON to feel that way. YOU have a damn good reason to feel that way, and to explore the possibility of an SSRI if it fits into your belief system. I know without my Zoloft I’d either be in jail or dead by now.

Twisty, there ain’t nothing good or ennobling about cancer. Fuck it all. Gee, would you have been a BAD PERSON if only you hadn’t gotten CANCER????

I’m sorry. I’m really, really sorry, and I wish there were something, ANYTHING, to make this shit better.

And I prefer your approach — for god’s sake, how can we ever be expected to find better and more effective cancer treatments, with fewer horrific side effects, if every cancer “survivor” is doing “great, just great!”?

And BDL, that is absolutely one of my all-time favorite poems.

P.S. Twisty, I hesitantly second hedonist’s input — hesitantly because I know you get enough medical “advice” thrust at you, but I will say my Wellbutrin & Lexapro have saved my life.

And by the way, do you also know you are a walking case of PTSD? (I recognize the symptoms.) Maybe treating the PTSD will help.

I’m sitting here waiting for my Onc to call and tell me the results of my latest breast MRI. Every time my cell phone rings I jump like a god damn cat on a hot tin roof. This post couldn’t have come at a better time. As always, thanks for calling “bullshit” when and where it’s needed.

My dad is in the end stages of colon cancer and even he talk about the heroism of breast cancern survivors. How they have it worse than him, how it’s harder etc.

I want to scream at him for it because from where I stand it’s not about who is more virtuous but about how the disease and treatment are completely fucked up. How they hurt the person with cancer and all their close family and friends.

I’m sorry to hear that in a way having cancer never goes away. I sort of figured it didn’t and you voice my own rage in far better ways than I can. Thanks.

Twisty, your anger and bullshit-calling is a shitload more inspriring a cancer survival story than any pink-ribboned KitchenAid mixer. I’m sorry I can’t be of help, but I send you a metaphorical taco of admiration from afar nonetheless.

“Do you need to vent to me about the sucky thing you’re going through?”

I really want to start using that one, it would make things so much better for everyone if you could simply say how crap things were, and not have people ask you questions relating to your cancer with the presumption that you will say:

everything is fantastic! why if only I’d smoked and drunk more and had a more stress inducing job I could have got this disease and had an amazing period of personal growth even sooner!

“And I prefer your approach — for god’s sake, how can we ever be expected to find better and more effective cancer treatments, with fewer horrific side effects, if every cancer “survivor” is doing “great, just great!”?”

I really agree with this, everyone should complain at the scientists until the treatments cure you completely, no more settling for waking nightmares.

I’ll go make a placard…

Ugh.

Ouch.

Yeucch.

Thanks. Really.

And Liz, I hear ya. My sister Jeanne fell through those same cracks and it killed her.

What, the pink breast cancer awareness bats didn’t undo the damage wrought by modern medicine?

It could be metaphorically worse; a sign mysteriously appeared in my company bathroom with Katie Couric advising me about colorectal cancer by making an impromptu rectangle out of her thumbs and index fingers. I don’t even want to know what that means.

I will, however, commit to keying the first Eddie Bauer Special Edition Chevy Tahoe with a pink ribbon parked on SoCo the first chance I get.

What burns my butt is how long the fight was to even have the medical establishment acknowledge that there are a multitude of symptoms r/t to cancer treatment. If I can toot my profession’s horn, it was nurse-researchers (in particular Lilian Nail,http://www.ohsu.edu/crsmlti/bio_lillian.html, who is also a 3x cancer survivor) who really pushed to have the phenomena recognized. The latest things are: looking at symptom clusters and looking, at a molecular level, at the process — the latest theory is that at least some of it is related to the inflammatory process that happens when we get a cold, but it just doesn’t shut off.

I’m sorry you feel like crap. I’m sorry that most people who go through cancer treatment aren’t given an honest description of the side effects and how long they last. As so many others have said, vent away.

I recently lost a friend to cancer. He couldn’t wait to go, truth be told, though it took him a long time to admit it. He would have approved of this post, I think.

“Do you need to vent to me about the sucky thing you’re going through?”

or the more socially acceptable,

“Want to go for a coffee and just talk?”

I’m the go to person for people who need to vent- family is pestering you about the mother’s alzheimers, transplant friends dying because they can’t take the medical routines, burn scars, whatever. I’m not squeamish and I am willing to listen for a question before giving advice.
Nothing ever got cured that wasn’t complained about first, so vent, bitch and if necessary, whine. We can take it and no one should feel crappy alone.

I have never gotten much out of venting. And I think there are some ill or dying people who do not want to vent. My request would be, can you drive me to the bush/ocean/mountains and come back and get me in three days? I’ll still be ill, but I’ll be me, again.

Forget about ‘Take Back the Night.’ Instead, let’s take back the right (if we ever had it to begin with) to say that sometimes life sucks. In fact, most of the time life sucks. Pain sucks, and we usually have to deal with more of it for every year we grow older. Cancer in particular sucks on toast. Everything about it, even surviving it. Why can’t we say so? The only answer I can come up with is that it offends the people who are determined to pretend that life does not suck.

Well, damn, I’m sorry. Life does mostly suck. We keep plugging away at it because the times that don’t suck are so fucking brilliant we want to try and experience them again. But no one should expect you to be experiencing them every minute of every day. If everyone was really as ‘fine’ as they all claimed, the world would be a much happier place.

Your cancer sucks, Twisty. Get yourself a non-sucky taco and tell the idiots to fuck off.

She said ‘you don’t understand what I said’
I said ‘no no no, you’re wrong, when I was’
going through the shit my own self, Twisty, I created and took in to my doc a chart of symptoms, cross-referenced and ranked by heinousness, that included most of the things on your list. My own chemo-brain, hormone-deprived, raging weeping maniac phase occurred right around 9/11, and such was my grief, despair, and anger that one night the week after I found myself “rearranging” the kitchen cabinets by prying them off the wall with a crowbar. I remember being in a sweaty weepy heap on the floor about an hour later, thinking that it seemed like a good idea at the time and wondering What The Fuck.

There’s nothing that’s going to make it all go away. Even though you know what you know, here’s what I know that might be of use:

1) Chemo brain gets better. Truly, it does. Just takes a little time. Although even with chemo brain, you’re still the greatest ass-kicker on the InternetsTubes.

2) Some antidepressants—perhaps all SSRIs for all I know, but anyway in my case, Zoloft—apparently short-circuit the hot-flash switch in your brain. Also helped tremendously with the mood swings, weepiness, depression.

3) That tightness sensation in your chest will lessen in time also.

Wish I had a magic wand to wave over all the rest of it, Twisty dear. Seriously, I remember those dreadful “post-treatment” days. Demand good drugs. Lots of good good drugs. Drink many margaritas. This too shall pass. Jeezus, now I feel like a cross-stitched kitchen plaque.

HPS, as a woman who has intentionally shaved her head, I know the reactions you’re talking about.

Of course, back then I was a 21-year-old snarly punk-rock type, and the bald head went with my knee-high combat boots, my patched-up military surplus jacket, and all that fun stuff, so the reactions when I was dressed up were pretty predictable (although the tourists who wanted to snap photos of my boyfriend and I at the Quay in North Vancouver were a bit unexpected).

It was in my work clothes (for a “nice girl” clothing store on Vancouver’s Robson Street) that I got all the stupid reactions, ranging from “Oh! You poor suffering dear!” to the “Look at the freaky dyke in a dress.” I started wearing hats to work to make life simpler.

Later in my bald career, I was asked by an elderly Italian woman if I was a man or a woman, and then she told me how I was so ugly that no man would ever want me, etc.

Funny how a woman’s hair becomes everyone else’s business. Now that I’ve grown it long and let it go natural (auburn with a few grey strands coming in), the comments have just changed—they haven’t stopped. And no, you can’t touch it!

Wow, Twisty. All I can say is your chemo-brain is way smarter than my healthy-as-far-as-I-know-brain hands down. Yours is the only blog I read anymore, and I find myself quoting you often.

Anyway, I just want to echo what everyone else has already said. Cancer sucks, and you should rant all you want.

Thanks for sharing with us.

Hey, I watched my mom go through breast cancer treatment. I always wondered how much she hid from us. She wanted to get going again really fast.

I do want to oppose the scientist bashing here for a bit. Yes there are a lot of men in science. But there are also very strong, interested and courageous people(both genders) working to actually make life for humans better. Science doesn’t work with the magic wish. We all want real cures for cancer and a whole host of other diseases, but that takes a whole lot of work. Currently it isn’t even clear why and how cancer forms, what the crucial steps are to stop it from forming. This of course makes it unbelievably difficult to find a cure.

What we can do is change our (american) culture so people that hurt can say so. And if you feel underinformed, well I can try to find the answers you want, or another scientist. We are out there, we are people, talk to us!

The first time I asked you if you were feeling OK, you shouted out “I’m not dead!” at me, and I was stunned into silence. You were trying to say everything you say in this post in one quick phrase. And I heard – or felt – a lot of it right then, but had to process it and still keep on talking.

You still rock, Twisty. A Twisty Faster reduced by science and cancer is still a being to be reckoned with on every level.

You carry yourself with such relaxed and unapologetic grace that I thought the booblessness almost flattering, considering what traitors they turned out to be. Several times I wondered how anyone could have found you disturbing, like the country club women.

You look really healthy and strong, even though I could easily tell you still suffer. You glow with an internal fire that is undimmed.

MzNicky, I never pried anything off my walls when I was on my Hamster Wheel of Grief. That’s what I called it when my brain would fixate on something bad and go round and round with it and I couldn’t even change the subject on myself. Rather, my tendency was to frantically organize everything by color and go buy more of those things in every frickin color that I didn’t have because I had to have them EVERY SINGLE COLOR because the world would end if I needed something and I didn’t have it in the right color!!!!!!! Dayum, you should see the shit in my house. I don’t even remember buying half of it.

Oh, and twice I was so depressed I scheduled and paid for plastic surgery. Once with a credit card.

Can I BTP?

I use to read all these books about women suffering from various diseases when I was in elementary school and high-school…For some reason both libraries were well stocked with the adventures of young women wasting away from some disease…Looking back it was all very disturbing. All the patients were YOUNG most importantly, beautiful, and rarely showed physical signs of the disease. In one memorable book, the patient was told to imagine her cancer being zapped away by benevolent angel type creatures, as if you could use the power of your mind to destroy cancer. What I’m trying to say is this kind of thinking is something we were indoctrinated into early, especially women. None of the ‘wasting away from illnesses genre’ was ever marketed toward men. They want us to suffer beautifully if that makes any sense. It’s sick and twisted and most definitely a form of sadism. Who cares if your dying, the books seem to say, as long as you look good doing it and of course keep a positive attitude, the reason your sick is that you can’t ‘mind zap’ it away. Typical blame the victim mentality.

goddammit, Twisty, I’m sorry. I wish I could make it better. As many people have said, your chemo brain is much sharper than most peoples’ “healthy” ones. I bow to you.
Sending you better-feeling thoughts.

Please don’t misunderstand me Jessant. I’m not blaming the scientific community because they haven’t found a cure yet. I’m blaming them because they aren’t looking for one. What they’re doing is pharmaceutical marketing. This isn’t science, it’s business.

Nothing the patriarchy likes better than a grateful, suffering woman who keeps her mouth shut. So keep yelling as loud as you want, Twisty — we hear you. And are the better for it.

Rotten as you feel, you give us so much. I wish we could reciprocate somehow and make it better for you, damnit.

SSRIs? Martinis? Etc.? Hope you can ease the pain by any means necessary. And though they may induce more pain than they salve, I’ve got some juicy pre-Codes I could send you if you’re so inclined.

Sorry you feel so fucked. But glad you’re still with us. And thanks.

C’mon, Twisty, say it loud; Cancer sucks and you blame the patriarchy, dammit. It’s bullshit that they don’t want you to blame about the bullshit. Fuck ’em sideways.

“…the macabre lump of feminine acquiescence on her chest.”

Holy shit, I love that. What cancer has wrought upon your mind and body notwithstanding, you practically SWEAT pure brilliance. Thank you for so colorfully and consistently sharing the inner workings of your brain with us. Thank you for not Oprahfying cancer (or anything for that matter), and honestly sharing all of the gruesome, unglamorous, and uncomfortably shitty details that come with a life-threatening illness and, more often than not, life itself.

Oh, well. I’m in moderation. I support you, Twisty, and you can always tell us how craptastic you’re doing because god knows it makes me feel better to at least hear someone else complain without couching it in “grateful” speech.

Oh, and for far more sensible advice on relief of the symptoms of menopause, visit Susun Weed’s website on the Wise Woman’s Way.
http://www.susunweed.com/

Thank you, Twisty. I’m in a high-risk group for breast cancer, and it scares the daylights out of me. Mostly, I find it frightening because I don’t know what to expect. There’s all this crap about personal growth, and finding oneself, and being a proud survivor, and I just can’t buy it.
What you describe is a whole lot worse than the standard sparkly happy line, but it’s comforting, too, because it’s honest. It’s much easier for me to face something when I know what to expect, even if it sounds awful.

We’ll politely say we’re fine, when we’re not, because we know that most of the people who ask are scared stiff of cancer, and would rather not know how shitty it is.

ObDisclaimer: I don’t have breast cancer (at least AFAIK) and if I had to make a first-person, I stongly suspect that I’d rather die than undergo yet one more surgery for cosmetic reasons.

However — while I can seriously question the motives of getting “reconstruction” done, can we at least acknowledge that these are body parts that are, ideally, present and that some women might not like to have something absent that has been there for a very long time? People don’t just have prosthetic limbs because of balance and utility, or else people wouldn’t use limbs with plastic silicone sheathes on them to look at least a bit like the skin on a normal human hand.

I can see how the “problem” with breasts is that you are patriarchally expected to have them and flaunt them — but not too much or else you’re a slut, Just enoguh to be a good perky girl who appears to be able to turn men on without actually trying to do so. I know tits complicate things.

But shit howdy people, give women who opt for that a bit more slack. This is a fucking amputation we’re talking about here. If I had cancer in my retina (and people do), I might opt for a glass eye, too. Sometimes people get reconstruction (or prosthetics or glass eyes) not because they can’t handle the antipatriarchal status of being the Thumb In The Eye Of The Man, but because when you’re missing parts, being the thumb in the eye of the man is a full-time fucking job, and that’s a hell of a job to carry off.

Basically, Twisty as a role model can speak to this in the first person, but if you are unwilling to walk around topless with two mastectomy scars to let everyone around you, even total strangers, know that you almsot fucking died and might still do so from an horrific disease, then STFU. I’m serious. Being Cancer Chick 24/7 to everyone who can see you is not a job that everyone wants to volunteer for, and sometimes not everyone has the Cool Feminist Chops to do it. Get the hell off a woman’s fucking back for making the not-sufficiently-antipatriarchal-for-you choice or getting a reconstruction or wearing a prosthetic breast. Goddamn it, even when our fucking knockers aren’t there, everyone owns a piece of them.

Christ. Again, I can see the political point of what’s being said, and again — Twisty has every fucking right to talk. She’s been there. Other women who have been there can talk about their experience. But Jesus. We’re talking about women who have been to the brink of death and still are sitting there. Cut them some fucking slack, would you?

“[A]s a woman who has intentionally shaved her head, I know the reactions you’re talking about.”

Bird, dear: No. No, you don’t. Twisty is talking about losing one’s hair to chemo. Big difference in involuntarily losing the entirety of one’s bodily hair, including that on one’s head, due to cancer treatment, as opposed to purposely doing it as a punk statement, or whatever. BIG fucking difference.

Sylvanite: My position is that cancer is not so much one’s body turning on one’s self as it is something OUT THERE that’s causing one’s body to fuck up. It’s not the human condition per se so much as it is the shit we’ve done to the atmosphere, the environment, etc., acting on the body, that is fucking us up, cancer-wise. Again, BIG fucking difference. This is just another way of blaming the victim.

Jokerine: In my BrCa research I turned up the curiously unpublicized finding that a rather sizeable percentage (I forget the specific number) of breast cancer tumors will do nothing, nada, in terms of growth, if left undetected and hence untreated. So don’t get all in our faces about the fabulousness of scientific progress. Yeah yeah, mammograms, advances in adjuvant meds, yadda yadda. I understand there’s now a vaccine for prostate cancer, which, isn’t that special, and would they had had it when my dad was first diagnosed, but still: As Twisty points out, with all the pink-beribboned races and sales of detergent and other capitalistic manipulations and exploitations of this female cancer epidemic, wouldn’t one think that the millions, if not billions, that have putatively been raised thus far in the name of breast cancer would have by now come up with something more than “get a mammogram” (assuming you can afford it), feel yourself up constantly (and thus, if you miss the lump, it’s your fault), and, if/when you’re unfortunate enough to be one of the, what is it now, 1 in 8?, who get it anyway, well, Big Daddy Medicine’s got the shit, as outlined by Twisty, to turn your life into a fucking living hell, in spite of which you’re expected to wear a pink-rhinestone-encrusted ribon pin and be all jolly and cheery about it anyway, lest you bring down others?

HP: “twice I was so depressed I scheduled and paid for plastic surgery. Once with a credit card. Can I BTP?”

You betcha. (And “Hamster Wheel of Grief” is a great way to describe this phase that Twisty’s going through, I think.) I’ve been to two breast surgeons to consider reconstruction my own self, which experiences reiterated to me how the patriarchy mightily waggles its wrinkly schlong when a newly de-boobed female contemplates her de-sexbotted future. I ended up wanting to tell each of them to eat me. I fucking don’t think so.

Sandi: “What we don’t need is a new ‘organization’, what we need is a real organization – any takers?”

I’m in. Precious little real grassroots activism over this has occurred, as far as I know, since Susan Love rallied women to storm the federal government with hundreds of thousands of letters in the early ’90s to finally get some BrCa research $$ going, which actually happened, and I for one have been a beneficiary of that subsequent work. That’s when Clinton was in the White House. Perhaps once we’re finally rid of the Chimp in Chief and his fellow thugs, a resurgence would be worthwhile.

MedeaonCrack: ” I’m not blaming the scientific community because they haven’t found a cure yet. I’m blaming them because they aren’t looking for one. What they’re doing is pharmaceutical marketing. This isn’t science, it’s business.”

Yes it is, yes it is, as well as finding ways to blame the victim. I did research on this for my master’s thesis in 2003, and the percentage of BrCa studies devoted to “cause” (i.e., blaming the cancer victim for not exercising enough, not eating enough vegetables, drinking, smoking, taking birth-control pills, having abortions, etc., etc. — none of which, by the way, showed any definitive link to breast cancer) that focused on “environmental conditions” was very negligible. Oh Duh. Whom shall we blame?

I think by “repulsive” you meant “refreshingly honest.” Probably it’s the chemo brain that fed you the wrong word.

I will unabashedly proclaim that sometimes you make me howl with laughter and wince with pain. Thank you Twisty. For the real, the raw, and the courage to tell it. I cannot go a day without you, and we are all the better for it. Well, that and the meds.

There’s a blood test for prostate cancer, and the docs don’t cut off the menz dicks when they get it. Just sayin.

Twisty, someday soon I am going to take my road trip across this country, and when I stop in Texas, I am taking you for tacos. My treat.

MzNicky it was about a year ago, here, that you damn near slaughtered me for saying what you’re saying today.

MedeaOnCrack: Say what? I don’t remember that. Please refresh my memory.

I’m Pony.

And anyhow, if the patriarchal value and carbon load of breasts outweighs their simple value as a normal body part to any woman here, then I will personally send flowers to your hospital room when you decide to get your own perfectly healthy breasts removed in a feminist statement against the patriarchy valuation of said breasts.

Fuck it. The next time you get asked, answer honestly. They may think you’re ungrateful (idiots) but at least they might STFU and stop asking stupid questions.

LMYC: “And anyhow, if the patriarchal value and carbon load of breasts outweighs their simple value as a normal body part to any woman here, then I will personally send flowers to your hospital room when you decide to get your own perfectly healthy breasts removed in a feminist statement against the patriarchy valuation of said breasts.”

I’d do it right now if I had the money. I would be so much happier with an androgynous body. Binding gets a bit sweaty in the summer, after all. Not being allowed to go topless won’t be an issue though; I’ve got the Irish Curse. You won’t catch me outside in the daylight not fully covered anyway.

P.S. I like daisies best.

Medea/Pony: I can’t imagine I “damn near slaughtered” you a year ago for saying what I’ve posted here. I do recall your positing something to the effect that you consider cancer treatments futile, with which I disagree. Beyond that, I don’t know what you’re referencing.

but they are PRETTY FUCKING SURE that Pesticides, and the by-products of making PLASTIC, very definitely CAUSE CANCER

No, they aren’t sure.

Hey, I found THAT out reading THIS BLOG!

I submit that medical journals are a better source of information on cancer research than blogs, no matter how well written.

Twisty: You want I should cross-stitch you a kitchen plaque that says “Drink many margaritas. This too shall pass”? I’d walk barefoot across broken glass for you, so I s’pose I could learn needlework. Just say the word.

Funny how hearing about others’ experiences gives me new perspective on mine. My eyes were cut out to treat bilateral retinoblastoma when I was 9 months old. RB is a cancer with exceptionally high incidence of secondary cancers in middle age (some studies say as high as 50%), so my parents essentially assumed and constantly reminded me (gee, thanks) that it would be back. One can only live with that kind of hovering cloud of doom for so long, especially as a child, so at some point I just stopped being afraid of it. Not because of any innate courage or any of that kind of bullshit, simply because I didn’t feel like thinking about it anymore. Right now, after reading your posts here, I’m feeling incredibly fortunate to have been forced to accept an imminent death at a time when I could not remember a time before.

I remember how, as a little girl, I could feel my mother shrink in embarrassment when I would tell some little old lady that I was about to die with this great big smile on my face, just to fuck with her head (I regret that my charmingly idiotic prosthetic eyes weren’t able to capture the facial expressions I received in response). Because everybody assumed that I was a goner and because being a poor pathetic blind chick there was NO WAY I’D EVER AMOUNT TO ANYTHING, nobody ever expected jack shit out of me…which then and now both pisses me off and entertains me, sometimes simultaneously.

Right now I’m also feeling pretty pleased that nobody knows what the hell RB is or I’d have to listen to bullshit self-gratifiers talking about it and their holy awareness of it every waking minute. Though at least I’m spared having to see the various visual bombardments…the idea that blindness is the worst thing that can befall a person is total bullshit, take it from me.

32 and not dead yet, but I’m sure the damned clock is still ticking. In the last four years I’ve lost my father, my sister, and my husband to nasty ass cancer, my brother and mother to other horrid diseases, and my close friend to her fucking ex’s desire to crush her throat and bash her skull in. There’s no good way to die. Good death is so Hollywood.

And LMYC, amen about the hair. Mine hangs to my ass and would take over the universe but for the lack of opposable thumb. One of my favorite pastimes has always been to braid it wet and smack people with it (drew blood once, I’m told).

“Currently it isn’t even clear why and how cancer forms, what the crucial steps are to stop it from forming. This of course makes it unbelievably difficult to find a cure.”

Oh I think there’s a really good idea of what causes these cancers of rapidly replacing and cycling tissues.
A really good idea.
There’s just the other day a compendium published of 200 or so of the chemical culprits – many of which the little ladies are in contact with so as to maintain their identification as the woman class.
http://www.latimes.com/news/science/la-na-cancer14may14,0,3950809,print.story?coll=la-home-center
And I don’t mean only cosmetics and household chemicals.
I note, for those following the politics of the cancer industry, that the study got 5 million from the Komen Foundation.

But there’s no will to urgently examine that end of the supply stream for the modern medical engine – because it’s not a source of income in the first place and in the second more important place, controlling the ubiquity of the culprits in the woman’s environment would reduce the income of the patriarchal corporation gods.

That most recent report and the responses, sadly of medical establishment defenders in this thread too, remind you of the other spin-fest? Tobacco and its profiteers. How much easier to deflect blame from your own product when there are another 199 industries running the spin too?

In a very real sense, women can be regarded as by-catch for the great trawler of this industrial/petroleum age. We remain unaffected by the sea of synthetic stuff long enough to produce and raise replacements, and then our agonised flapping around on the deck from the net that has caught a shipload of profit for oh, about 20 different medical and pharmaceutical interests is of course a real shame, but doesn’t affect the progress of the great profit trawling fleet. And with the pink washing, or before that the injunction on any woman from showing any pain, there are enough crippled survivors of onco machines that can continue to do the housework for many more years, even if it is a total battle every day for them. And as for we who have been so sinning as to refuse to reproduce? We deserve the pains of the damned anyway.

“What we can do is change our (american) culture so people that hurt can say so. And if you feel underinformed, well I can try to find the answers you want, or another scientist. We are out there, we are people, talk to us! ”

I blame the patriarchy every day in my sh*77y little corner of the medical machine. Don’t come and talk to me because all I’m allowed to reply is
~have a nice day, you don’t really matter in the grand scheme of things.

Twisty, I hope that you start feeling something more like your old self soon. I have been grappling with Lyme disease which causes brain fog similar to what you describe. I think of all the symptoms, the brain fog is the worst. It’s as if your brain is a computer and someone erased an important part of the hard drive. As someone who has always prided herself on being a smart person, and who’s generally been viewed that way by others, it’s a real mindfuck to one day see that the world around you is treating you like a dipshit airhead. And even more of a mindfuck to realize they are right. I feel for you. If it helps, you on a bad day are more intelligent, trenchant and hilarious than 99.9 percent of the population on a good day.

A friend of mine wrote up a list of the top 10 worst things people say to you when they find out you have cancer.

http://the-ravelld-sleave.blogspot.com/2006/10/just-fine-thanks-how-are-you.html

Twisty,

My dog Patches sends you gentle kisses and a tail wag. He doesn’t want you to suffer heroically, or be reconstructed for his comfort. He just wants you to feel better.

I want the same, but am prone to saying stupid things by not thinking first. I aspire to my dog’s tact and compassion.

Back to lurking. (Elipses omitted for your peace of mind.)

Well, envvironmental toxins do help cause some cancers, but unfortunately, MzNicky, a lot of cancers really are our bodies’ cellular reproduction systems going haywire for no good reason. It’s not blaming the victim any more than pointing out that environmental toxins don’t seem to cause multiple sclerosis is blaming the victim. Of course, it does seem that viruses are increasingly being implicated in cases of cancer and autoimmune disfunctions, but still. Sometimes bad shit just happens to people, even when they’ve done everything right, and it’s nobodies’ fault! That’s what really sucks about it.

Don’t know if you’re still reading comments on this, but yes, it’s amazing how the world moves on and expects you to move on too whether you’re well or not.

I wish I had a magical taco for you, but I don’t. Barring that, continue to complain at will and none of your readers will expect you to put on a happy face.

Twisty,
Joining the throngs to say how sorry I am to hear about the wretched crud you’ve had to endure and continue to endure. Thank you for saying how it really is. Thank you for passing along MzNicky’s words from farther along the path.
Wishing you respite when possible, and many small moments of grace.

Do dogs help at all?

“[A]s a woman who has intentionally shaved her head, I know the reactions you’re talking about.”

Bird, dear: No. No, you don’t. Twisty is talking about losing one’s hair to chemo. Big difference in involuntarily losing the entirety of one’s bodily hair, including that on one’s head, due to cancer treatment, as opposed to purposely doing it as a punk statement, or whatever. BIG fucking difference.

Shit, I should have been more clear. I was replying to HPS’s experience of having people think you have cancer or the like when you don’t (her because she has a condition that has made her lose her hair, me because I buzzed mine off).

My mom is in a hospice dying of brain cancer. She lost her hair because her head was radiated. I’d never equate my experience to hers or Twisty’s. Cancer is shitty hell (and I may be facing it soon too, depending on my test results).

Sorry to anyone who might have been hurt by my lack of clarity. I didn’t intend to trivialize anyone’s experience.

I read this yesterday, and today I still don’t know what to say.

Except possibly that you are an incredibly amazingly woman, and I admire you dearly.

Dog have mercy, Twisty, I love you so much.

I sent this post to my best friend who has just lived through Leukemia. About eleven months of chemo hell.

Thank you for being so consistently awesome.

Ha, Tmorph, fancy meetin you here.

If you find yourself in Oklahoma, I give really good footrubs; I’ve been giving them for 40 some odd years, starting with my mom, who used to be a nurse. You rock, Twisty!

I hope that dogs help. Speaking of which, I hope that Zippy has fully recovered and that ya’ll are comforting each other.

*hugs for Twisty and Zippy*

I prefer, “Hi. It’s good to see you.” It’s a great way to open the conversation.

What to say?

That must really, really suck.

The latest safe products list from the Environmental Working Group. Don’t wash your hair with carcinogenic shampoo:

http://www.cosmeticdatabase(dot)com/index.php?nothanks=1

I know what it is to be sad.

My first comment got ate. Much love and admiration.

Being so ill is horrible, and then the expectation to be “positive” and “brave” ? Yeah, sod that.

You make me feel small for ranting about inconsequential things. It’s stupid self-indulgence and I need to just STFU already.

I love you.

No really.

My husband died at age 24 after having leukemia for a long time. He passed away last year.

Throughout the treatment and after his death, people told me so much bullshit that I felt that I was drowning in a sea of saccharin.

How about being fucking REAL for a change?

I wrote a lot about the dumb shit people said at my old blog. I’m managed to keep a tighter cap on my opinions recently through heavy usage of meds, drugs, and having a mild mental health issue.

Keep on preaching the word so that people get used to the TRUTH.

love,
amanda