Lying to ourselves about mortality is what separates us from cats.
July 21, 2017 11:29 AM Subscribe
It's Okay to be a Coward about Cancer. Josh Friedman, tv writer and showrunner of the (late, beloved) tv series Terminator: the Sarah Connor Chronicles, shares some thoughts on dealing with cancer. Cancer doesn’t give a damn how tough you are. Cancer doesn’t care if you stared down the North Koreans, or won the Tour De France, or wrote two seasons of a scary robot show.
Related post: Smile! You've got cancer
posted by homunculus at 12:24 PM on July 21, 2017 [2 favorites]
posted by homunculus at 12:24 PM on July 21, 2017 [2 favorites]
I have to admit, I've always found the whole battle/war metaphor language surrounding cancer to be really off-putting. I mean, I understand it. But, every time I hear about someone "losing their battle" or "lost their fight" or they "beat" cancer, it just seems somehow off-point to me. I, of course, hope to hell I never have to deal with such a diagnosis, but I'm not sure just how I will deal with the first person to lay any of those war metaphors on me. I can easily see myself going off ballistic on them, well-wishing though they may be.
posted by Thorzdad at 12:46 PM on July 21, 2017 [4 favorites]
posted by Thorzdad at 12:46 PM on July 21, 2017 [4 favorites]
This is so good. And that show was so good. I wish there had been more of it.
posted by limeonaire at 12:49 PM on July 21, 2017 [3 favorites]
posted by limeonaire at 12:49 PM on July 21, 2017 [3 favorites]
My wife's first post breast cancer treatment mammogram was clear, but her oncologist won't use the word remission for 2 years. I'm not sure what word describes her, or us, right now. She has been going with "being treated for cancer," which I guess works as well as anything else. We definitely need better vocabulary around this stuff. It's not a battle or a war, and according to the oncologist, as far as we know, she is cancer free. So "has cancer" doesn't really describe it either.
posted by COD at 1:05 PM on July 21, 2017 [5 favorites]
posted by COD at 1:05 PM on July 21, 2017 [5 favorites]
My dad was 79 years old when he had a surprise diagnosis of brain cancer (his was found because his ENT sent him for an MRI to try to find out why his hearing loss was asymmetrical; the discovery of the tumor was coincidental). His tumor was an anaplastic astrocytoma, which is the grade 3 type tumor of which the glioblastoma is grade 4 (they are equally aggressive; IANAD but my understanding was that Dad's tumor lacked the necrotic tissue they expect to see around a grade 4 tumor). Unlike McCain's blood clotting, Dad was asymptomatic at the time of his diagnosis. Dad had an invasive surgery, the six week course of chemo, and then months of the 28 day cycle of chemo (five days on, three weeks off, lather, rinse, repeat). That lasted up until he had to stop doing chemo because it stopped being effective and it was causing his skin – nearly all of it – to break out in a rash. And oh, his medical oncologist (the one person who actually seemed to care about whole patient care, not just treatment options) left the practice, and was never replaced.
His first surgery was followed up by months in and out of hospitals and skilled nursing, capped off by his complete physical collapse at home, twice in one day. (The second time the EMTs came to help him up, they suggested he go to the hospital). A CT scan revealed enough tumor regrowth that his neurosurgeon recommended a second surgery (and with no medical oncologist to take an opposing view, and ever-present optimism about how much better everything would be, Dad didn't say no). After the second surgery he went from hospital to skilled nursing, back to the hospital, and then into palliative nursing care, and even they sent him back to the hospital at one point.
He survived almost 14 months after his diagnosis and first surgery, with perhaps a month where his quality of life wasn't terrible in one way or another. He had trouble peeing and had to go to the ER a couple times with a severely distended bladder. He was also severely constipated and often in pain because of one of those two problems. On top of that his chemotherapy cost $33,000 per month, the surgeries cost hundreds of thousands of dollars, and he spent so much time in hospitals and nursing homes (skilled or palliative) that I don't even know what the price of all that was in dollars. Not to mention life.
We delude ourselves into thinking that aggressive treatment is worth it, that we'll get some quality of life back at the end of it. It's not true if you're 80 and you have an aggressive brain tumor. If I live long enough to make it to 80 before they find an aggressive tumor in my brain, I'm going to deny any treatment, pick some trip off my bucket list, and go out with as much of a bang as possible.
Screw fighting a war.
posted by fedward at 1:33 PM on July 21, 2017 [80 favorites]
His first surgery was followed up by months in and out of hospitals and skilled nursing, capped off by his complete physical collapse at home, twice in one day. (The second time the EMTs came to help him up, they suggested he go to the hospital). A CT scan revealed enough tumor regrowth that his neurosurgeon recommended a second surgery (and with no medical oncologist to take an opposing view, and ever-present optimism about how much better everything would be, Dad didn't say no). After the second surgery he went from hospital to skilled nursing, back to the hospital, and then into palliative nursing care, and even they sent him back to the hospital at one point.
He survived almost 14 months after his diagnosis and first surgery, with perhaps a month where his quality of life wasn't terrible in one way or another. He had trouble peeing and had to go to the ER a couple times with a severely distended bladder. He was also severely constipated and often in pain because of one of those two problems. On top of that his chemotherapy cost $33,000 per month, the surgeries cost hundreds of thousands of dollars, and he spent so much time in hospitals and nursing homes (skilled or palliative) that I don't even know what the price of all that was in dollars. Not to mention life.
We delude ourselves into thinking that aggressive treatment is worth it, that we'll get some quality of life back at the end of it. It's not true if you're 80 and you have an aggressive brain tumor. If I live long enough to make it to 80 before they find an aggressive tumor in my brain, I'm going to deny any treatment, pick some trip off my bucket list, and go out with as much of a bang as possible.
Screw fighting a war.
posted by fedward at 1:33 PM on July 21, 2017 [80 favorites]
Jesus, fedward. I'm so sorry.
posted by suelac at 1:51 PM on July 21, 2017 [8 favorites]
posted by suelac at 1:51 PM on July 21, 2017 [8 favorites]
This hits home today. Fifteen years ago I was treated for breast cancer and was mostly successful at being heroic, funny, and calm about it for the sake of my husband, young children, and colleagues. On Monday I'm going for a biopsy. I know the chances of this being a recurrence are small, but they're not zero, and if I have to do another year of treatment it will, as the kids say, suck majorly. I'm not sure I'm up for funny and brave again.
posted by angiep at 2:06 PM on July 21, 2017 [15 favorites]
posted by angiep at 2:06 PM on July 21, 2017 [15 favorites]
So, I finally stop lurking, and it is even cheaper than what those guys on the phone want me to spend per month for a service I thought I was already paying for.
Sorry.
Let me introduce myself: I'm a little weird. That would be on account of me trying to be a proper human where somewhere deep inside I know I'm probably not. I really miss breathing fire, for instance.
Nonetheless!
I had a very good endocrinologist. He never said it, but I'm probably a collateral of Chernobyl and I'm watching all those kids over at Fukushima with interest.
Most of them are lucky, because, like I was told by abovely mentioned endocrinologist, there's some cancers that actually do not usually go into remission and if they do, it's usually easy to deal with them and they're usually slow and yada yada usually yada you know, look, I didn't come here to talk about myself.
I paid those five bucks to talk about YOU.
So, old news since life was created: Everybody will probably die one day.
Even you. Maybe even me (look at my straight face).
Is it better to die without warning, or to have time to plan while your body starts failing to do what a body is supposed to do?
Age is the ultimate killer, not even those cancers that kill people like Iain M. Banks or Steve Jobs or John McCain or Josh Friedman.
Maybe that's not fair, and maybe you're not finished with what you always meant to do on Earth. But it's what cards you were dealt.
It's what cards I am dealt.
You, and me, and everybody else on this amazing planet: Please consider what you wanted to do, always, and work towards doing it sooner rather than later.
"Sooner" as in tomorrow is a fine saturday, and if you want to look up at the clouds and really watch them for a while, then do that. If those clouds are in the eyes of a beloved, then watch those eyes. If you wanted to visit Belize, or write a poem, or hug a stranger, or buy new shoes: Go for it!
Tomorrow is the first day to totally do what you want - instead of what you must - before you die.
And let me reassure you: You will die. I will die.
That's not a problem. It's just like Randy Pausch said: The walls are just there to keep others from doing what you really want to do.
I bet someone has linked his "Last Lecture" here before, so I won't because I'm new and I know how forums work.
Tomorrow is saturday. You know what to do. I command you to do it. I'll write you a prescription if you need one, or a sonnet, or a law, or breathe fire at your sorry lazy little butt if you don't.
And the day after that is sunday. Of course, sundays are even better. And those few of you who won't make it to sunday: I salute you.
.
Abovely mentioned endocrinologist sincerely suggested NOT to be afraid of checkups, because the SOONER you catch a nasty, the easier it is to fix. Quite a few can be fixed properly these days. He mourned for that young girl who was so afraid to get that lump in her breast checked that once she did, it had spread, and it was basically over.
#insertcleverhashtaghere
posted by flamewise at 2:07 PM on July 21, 2017 [33 favorites]
Sorry.
Let me introduce myself: I'm a little weird. That would be on account of me trying to be a proper human where somewhere deep inside I know I'm probably not. I really miss breathing fire, for instance.
Nonetheless!
I had a very good endocrinologist. He never said it, but I'm probably a collateral of Chernobyl and I'm watching all those kids over at Fukushima with interest.
Most of them are lucky, because, like I was told by abovely mentioned endocrinologist, there's some cancers that actually do not usually go into remission and if they do, it's usually easy to deal with them and they're usually slow and yada yada usually yada you know, look, I didn't come here to talk about myself.
I paid those five bucks to talk about YOU.
So, old news since life was created: Everybody will probably die one day.
Even you. Maybe even me (look at my straight face).
Is it better to die without warning, or to have time to plan while your body starts failing to do what a body is supposed to do?
Age is the ultimate killer, not even those cancers that kill people like Iain M. Banks or Steve Jobs or John McCain or Josh Friedman.
Maybe that's not fair, and maybe you're not finished with what you always meant to do on Earth. But it's what cards you were dealt.
It's what cards I am dealt.
You, and me, and everybody else on this amazing planet: Please consider what you wanted to do, always, and work towards doing it sooner rather than later.
"Sooner" as in tomorrow is a fine saturday, and if you want to look up at the clouds and really watch them for a while, then do that. If those clouds are in the eyes of a beloved, then watch those eyes. If you wanted to visit Belize, or write a poem, or hug a stranger, or buy new shoes: Go for it!
Tomorrow is the first day to totally do what you want - instead of what you must - before you die.
And let me reassure you: You will die. I will die.
That's not a problem. It's just like Randy Pausch said: The walls are just there to keep others from doing what you really want to do.
I bet someone has linked his "Last Lecture" here before, so I won't because I'm new and I know how forums work.
Tomorrow is saturday. You know what to do. I command you to do it. I'll write you a prescription if you need one, or a sonnet, or a law, or breathe fire at your sorry lazy little butt if you don't.
And the day after that is sunday. Of course, sundays are even better. And those few of you who won't make it to sunday: I salute you.
.
Abovely mentioned endocrinologist sincerely suggested NOT to be afraid of checkups, because the SOONER you catch a nasty, the easier it is to fix. Quite a few can be fixed properly these days. He mourned for that young girl who was so afraid to get that lump in her breast checked that once she did, it had spread, and it was basically over.
#insertcleverhashtaghere
posted by flamewise at 2:07 PM on July 21, 2017 [33 favorites]
Here we go - I wasn't reading you fine folks in 2008 yet.
posted by flamewise at 2:13 PM on July 21, 2017
posted by flamewise at 2:13 PM on July 21, 2017
I'm so sorry fedward.
Some level of treatment can be palliative rather than curative, especially for a brain tumor where stabilizing the tumor size or slowing growth can benefit quality of life. But yeah, when MuddDude went through brain surgery and daily radiation for his tumor (his doctor said he had "one of the good cancers" which is not something I ever expected to hear, like does it pay out winning lotto tickets or something?) it was on the edge of too much and he was a young and healthy 30 year old, in the best shape of his life except for the tumor slowly eating through his dura.
We do call MuddDude a cancer survivor because that's the truest label we can think of. He is so far disease-free but his chance of recurrence is still peaking and there are all those nasty secondary tumors from treatment to consider. MD Anderson cancer center calls every patient a cancer survivor from the moment of their diagnosis, because well, it hasn't killed you yet.
posted by muddgirl at 2:15 PM on July 21, 2017 [9 favorites]
Some level of treatment can be palliative rather than curative, especially for a brain tumor where stabilizing the tumor size or slowing growth can benefit quality of life. But yeah, when MuddDude went through brain surgery and daily radiation for his tumor (his doctor said he had "one of the good cancers" which is not something I ever expected to hear, like does it pay out winning lotto tickets or something?) it was on the edge of too much and he was a young and healthy 30 year old, in the best shape of his life except for the tumor slowly eating through his dura.
We do call MuddDude a cancer survivor because that's the truest label we can think of. He is so far disease-free but his chance of recurrence is still peaking and there are all those nasty secondary tumors from treatment to consider. MD Anderson cancer center calls every patient a cancer survivor from the moment of their diagnosis, because well, it hasn't killed you yet.
posted by muddgirl at 2:15 PM on July 21, 2017 [9 favorites]
Susan Sontag wrote a great book called Illness as Metaphor about this sort of thing. It touches on the problems of equating cancer treatment to a war or battle. The copy I got is paired with AIDS and Its Metaphors which is also a good read. I really recommend them both.
posted by Gymnopedist at 2:51 PM on July 21, 2017 [7 favorites]
posted by Gymnopedist at 2:51 PM on July 21, 2017 [7 favorites]
I definitely think "survivor" is a good word, and acknowledges a tiny bit the trauma involved just in diagnosis and treatment. There is pretty much no form of cancer in which, once "gone", anybody gets to skip away certain they'll never have to deal with cancer again la la la, so I think survivor captures the permanent nature of the club.
posted by Lyn Never at 3:04 PM on July 21, 2017
posted by Lyn Never at 3:04 PM on July 21, 2017
I think I'm allowing myself more anger now than I had two years ago (this month!). My 17-year-old niece (a very smart and poised 17-year-old, but still) was the one calling EMTs to help him up, on what was supposed to have been a relaxing summer with her grandparents, because my mom was in the middle of her own health problems.
Dad basically had two really good doctors and a neurosurgeon. His radiation oncologist was great with him and had a really good bedside manner, but he more or less stopped being involved once dad's radiation treatments were done. The medical oncologist was really the best at palliative and whole patient care (she was the only one who actually seemed to care about his answers to questions outside the differential diagnostic), but she announced her departure at the same time she recommended dad discontinue his chemotherapy. That ball never got picked up. So at that point dad had just his neurosurgeon (his GP was useless), and, well, surgeons gonna surge. I mean, the guy was really good at the surgery part, but if you pictured every surgeon in "Scrubs" you wouldn't be wrong.
I think the big problem with cancer treatment is the lack of patient advocacy at nearly every level. Everybody defaults to aggressive treatment and optimism about outcomes, but high grade gliomas have 70% two year mortality. The amount of money involved is astonishing, but dad's regular pharmacy didn't even try to deal with his Medicare Part D supplement, basically just saying, "yeah, that'll be thirty-three thousand bucks" (Mom took everything to her pharmacy, the same brand, where they were like, "yup, but it has to be mail order, but here's how we do that").
So anyway: argh.
posted by fedward at 3:17 PM on July 21, 2017 [8 favorites]
Dad basically had two really good doctors and a neurosurgeon. His radiation oncologist was great with him and had a really good bedside manner, but he more or less stopped being involved once dad's radiation treatments were done. The medical oncologist was really the best at palliative and whole patient care (she was the only one who actually seemed to care about his answers to questions outside the differential diagnostic), but she announced her departure at the same time she recommended dad discontinue his chemotherapy. That ball never got picked up. So at that point dad had just his neurosurgeon (his GP was useless), and, well, surgeons gonna surge. I mean, the guy was really good at the surgery part, but if you pictured every surgeon in "Scrubs" you wouldn't be wrong.
I think the big problem with cancer treatment is the lack of patient advocacy at nearly every level. Everybody defaults to aggressive treatment and optimism about outcomes, but high grade gliomas have 70% two year mortality. The amount of money involved is astonishing, but dad's regular pharmacy didn't even try to deal with his Medicare Part D supplement, basically just saying, "yeah, that'll be thirty-three thousand bucks" (Mom took everything to her pharmacy, the same brand, where they were like, "yup, but it has to be mail order, but here's how we do that").
So anyway: argh.
posted by fedward at 3:17 PM on July 21, 2017 [8 favorites]
I just say "no evidence of disease"
I agree, not a war or a fight, being cheerful is overrated, and the word "cancer" has a completely different feel forever after the first time it's appkied to you. Not allowed to donate organs or bone matrow for transplant ever after. Restrictions on when you can start donating blood again. Just... fuck it.
Fuck it.
posted by janey47 at 3:26 PM on July 21, 2017 [1 favorite]
I agree, not a war or a fight, being cheerful is overrated, and the word "cancer" has a completely different feel forever after the first time it's appkied to you. Not allowed to donate organs or bone matrow for transplant ever after. Restrictions on when you can start donating blood again. Just... fuck it.
Fuck it.
posted by janey47 at 3:26 PM on July 21, 2017 [1 favorite]
Loved Ones Recall Local Man's Cowardly Battle With Cancer
I have lost two relatives to cancer; both of them passed away very shortly (in my uncle's case, less than two weeks) after being diagnosed, which compared to some stories I have read and heard seems like a blessing by comparison.
posted by The Card Cheat at 3:30 PM on July 21, 2017 [11 favorites]
I have lost two relatives to cancer; both of them passed away very shortly (in my uncle's case, less than two weeks) after being diagnosed, which compared to some stories I have read and heard seems like a blessing by comparison.
posted by The Card Cheat at 3:30 PM on July 21, 2017 [11 favorites]
Josh Friedman is so very funny, I've loved him for many years, I've read a version of his cancer story before, he's got a nice way with words.
I was feeling the exact same feelings that Friedman expressed after reading all the "McCain is a warrior" statements from yesterday. Again, the sentiments come from a good place, but it is so tiresome to hear the morality of being a true and honorable fighter. It's another way masculinity is difficult to negotiate, where there isn't much room for sensitivity or vulnerability.
posted by honey badger at 3:41 PM on July 21, 2017 [5 favorites]
I was feeling the exact same feelings that Friedman expressed after reading all the "McCain is a warrior" statements from yesterday. Again, the sentiments come from a good place, but it is so tiresome to hear the morality of being a true and honorable fighter. It's another way masculinity is difficult to negotiate, where there isn't much room for sensitivity or vulnerability.
posted by honey badger at 3:41 PM on July 21, 2017 [5 favorites]
i"ve had cancer 15 years, it started in in my righr lung. they removed the lung which was called an upper right lobectomy.then i was good to go. well low and behold 5 years later, the oncologist said i had liver cancer. i've been fighting that for 5 yrs now and the price is crazy. in fact i have to be at md anderson in houston tomorrow for lab work and cat scans , it sux , no doubt
posted by beemerboxer at 4:31 PM on July 21, 2017 [14 favorites]
posted by beemerboxer at 4:31 PM on July 21, 2017 [14 favorites]
Good luck to you, beemerboxer.
posted by suelac at 5:15 PM on July 21, 2017 [2 favorites]
posted by suelac at 5:15 PM on July 21, 2017 [2 favorites]
I've been cancer-free for about 11 years now. Whenever anyone describes my survival in terms of “fighting” or “beating,” or as something that I did personally, I say,”All *I* did was lie there and not die!”
posted by The Underpants Monster at 5:48 PM on July 21, 2017 [7 favorites]
posted by The Underpants Monster at 5:48 PM on July 21, 2017 [7 favorites]
....Courage is no good:
It means not scaring others. Being brave
Lets no one off the grave.
Death is no different whined at than withstood.....
Philip Larkin, Aubade
posted by lalochezia at 6:02 PM on July 21, 2017 [10 favorites]
It means not scaring others. Being brave
Lets no one off the grave.
Death is no different whined at than withstood.....
Philip Larkin, Aubade
posted by lalochezia at 6:02 PM on July 21, 2017 [10 favorites]
Someone I know had breast cancer come back and metastasize in the past couple of months. She is just over forty. She has three small children. She is gifted with a divine, extraordinary musical talent without which the world will be a far poorer place. She's expecting that this will be the end, and she and her husband have been preparing their children for it.
Her view is that life is a terminal illness. My world is already pretty bleak, but this news just made it slightly more bleak. Because she's right.
posted by tully_monster at 7:15 PM on July 21, 2017 [3 favorites]
Her view is that life is a terminal illness. My world is already pretty bleak, but this news just made it slightly more bleak. Because she's right.
posted by tully_monster at 7:15 PM on July 21, 2017 [3 favorites]
It's good to see this sort of bullpissshit being torn down. We don't tell people that an ingrown toenail can be better treated with a positive attitude. There's a great documentary on Lourdes where a disabled person makes an observation - there are plenty of crutches lining the walls of the grotto but no artificial limbs.
posted by bonobothegreat at 7:35 PM on July 21, 2017 [2 favorites]
posted by bonobothegreat at 7:35 PM on July 21, 2017 [2 favorites]
I am so sorry fedward.
On top of that his chemotherapy cost $33,000 per month, the surgeries cost hundreds of thousands of dollars, and he spent so much time in hospitals and nursing homes (skilled or palliative) that I don't even know what the price of all that was in dollars.
There is something seriously completely wrong with a society when this is a financial burden that happens.
posted by daybeforetheday at 9:45 PM on July 21, 2017
On top of that his chemotherapy cost $33,000 per month, the surgeries cost hundreds of thousands of dollars, and he spent so much time in hospitals and nursing homes (skilled or palliative) that I don't even know what the price of all that was in dollars.
There is something seriously completely wrong with a society when this is a financial burden that happens.
posted by daybeforetheday at 9:45 PM on July 21, 2017
I turned ten years old on July 20, 1987. I was running down the beach on Fire Island when I tripped and sprained my ankle (because, let's be honest, I was a serious klutz). That sprain never healed and on March 14, 1988 (after a whole lot more story happened) I was diagnosed with Non-Hodgkin's Lymphoma.
Yesterday was my fortieth birthday. I messed with my surgical scar, barely visible after almost three decades. I remembered crying in my mom's lap saying I'd rather die than take another one of those pills, understanding the gravity of that statement as much as an eleven year old could. I thought of my friends whose faces I can now only truly recall with photos.
To call myself a survivor demeans my friends who... what? Weren't good enough soldiers at age twelve and thirteen and sixteen to fight off the atypical cells multiplying in their bodies?
I wasn't brave. Like Xeni, I didn't know what else to do. I got in the van and slept through the traffic on the LIE on the way to Sloan-Kettering and had four finger sticks b/c my fingertips were so calloused that they couldn't get anything from me and then I saw the doctor and then I went and got my chemo and then my dad would get Papaya King and make me nauseous for the car ride home and then we were back on Long Island and then we'd do it again. If anything, my parents were the brave ones.
posted by ovenmitt at 9:50 PM on July 21, 2017 [16 favorites]
Yesterday was my fortieth birthday. I messed with my surgical scar, barely visible after almost three decades. I remembered crying in my mom's lap saying I'd rather die than take another one of those pills, understanding the gravity of that statement as much as an eleven year old could. I thought of my friends whose faces I can now only truly recall with photos.
To call myself a survivor demeans my friends who... what? Weren't good enough soldiers at age twelve and thirteen and sixteen to fight off the atypical cells multiplying in their bodies?
I wasn't brave. Like Xeni, I didn't know what else to do. I got in the van and slept through the traffic on the LIE on the way to Sloan-Kettering and had four finger sticks b/c my fingertips were so calloused that they couldn't get anything from me and then I saw the doctor and then I went and got my chemo and then my dad would get Papaya King and make me nauseous for the car ride home and then we were back on Long Island and then we'd do it again. If anything, my parents were the brave ones.
posted by ovenmitt at 9:50 PM on July 21, 2017 [16 favorites]
When my wife was diagnosed, our youngest son was one month old. Because parental leave is 12 months in Canada, and can be (mostly) shared between spouses, I was able to take the better part of a year off of work to take care of my wife and our babies. And our single-payer medical system, for all of the complaints about wait times, had my wife checked into the cancer centre for treatment less than 24 hours after diagnosis. Those are the two factors that made a garbage situation manageable. My wife has now been in the clear long enough that the oncologist is confident the cancer won't come back, and our kids won't even remember that any of this ever happened.
Bravery is okay. Socialism is better.
posted by rustyiron at 10:12 PM on July 21, 2017 [42 favorites]
Bravery is okay. Socialism is better.
posted by rustyiron at 10:12 PM on July 21, 2017 [42 favorites]
More on why cancer is not a war, in a UK context.
posted by GeorgeBickham at 11:36 PM on July 21, 2017
posted by GeorgeBickham at 11:36 PM on July 21, 2017
As terrible as it was to have my boyfriend diagnosed with terminal cancer and losing him 1 1/2 years after that, now two years ago, I am grateful for the many people who helped us and the things we did right, one of which was paying no attention at all to this toxic rhetoric that those who "battle" cancer and survive have "won," with the implied corollary that those who either refuse treatment or accept treatment but die are therefore "losers" in the cancer "battle."
We never entertained any "hope against hope." We knew that his diagnosis was terminal and we accepted it. This may not be easy to do for many, and I in no way fault whatever coping method works for anyone, but this was very helpful in having peace rather than excruciating anxiety wishing and hoping that a miracle might come along.
We were able to make the decision early on that once the treatment was no longer working, it would not continue. He then entered hospice care at home (which was rather difficult, but better than a hospital, at least for us), and he died at home. He was never hospitalized overnight except for a surgery, about a year before his passing, when he spent two nights at the hospital.
His friends were wonderful. I can't express my gratitude for them. And of course it was my boyfriend himself who made the process bearable, because of his disposition that is cheerful and kind. (I still talk about him in the present tense.) It's not fair to ask patients to make their loved ones feel okay. But that's what he did.
His doctors and nurses were wonderful as well (for the most part). We were unhappy with his first oncologist, so we sought out a specialist at a famous hospital, where everyone treated us with the utmost respect and kindness. (When I was rubbing my arms in a waiting room because it was a bit chilly, a member of the cleaning staff brought me a blanket.)
I am writing this to let people know that there is the possibility out there to receive appropriate care. I know many people have terrible experiences with doctors and hospitals. Our worst experience was with the hospice care, but it was still pretty good.
posted by Vispa Teresa at 1:29 AM on July 22, 2017 [7 favorites]
We never entertained any "hope against hope." We knew that his diagnosis was terminal and we accepted it. This may not be easy to do for many, and I in no way fault whatever coping method works for anyone, but this was very helpful in having peace rather than excruciating anxiety wishing and hoping that a miracle might come along.
We were able to make the decision early on that once the treatment was no longer working, it would not continue. He then entered hospice care at home (which was rather difficult, but better than a hospital, at least for us), and he died at home. He was never hospitalized overnight except for a surgery, about a year before his passing, when he spent two nights at the hospital.
His friends were wonderful. I can't express my gratitude for them. And of course it was my boyfriend himself who made the process bearable, because of his disposition that is cheerful and kind. (I still talk about him in the present tense.) It's not fair to ask patients to make their loved ones feel okay. But that's what he did.
His doctors and nurses were wonderful as well (for the most part). We were unhappy with his first oncologist, so we sought out a specialist at a famous hospital, where everyone treated us with the utmost respect and kindness. (When I was rubbing my arms in a waiting room because it was a bit chilly, a member of the cleaning staff brought me a blanket.)
I am writing this to let people know that there is the possibility out there to receive appropriate care. I know many people have terrible experiences with doctors and hospitals. Our worst experience was with the hospice care, but it was still pretty good.
posted by Vispa Teresa at 1:29 AM on July 22, 2017 [7 favorites]
I hate the warrior language. When families fully buy into it and the patient dies, sometimes they'll lead the announcement with "[name] beat cancer on 7/22 at 7:30am" which ... that's not how it goes.
Warm thoughts to all of you going through this.
posted by kimberussell at 4:35 AM on July 22, 2017 [1 favorite]
Warm thoughts to all of you going through this.
posted by kimberussell at 4:35 AM on July 22, 2017 [1 favorite]
The winning/losing thing is so laden. Does losing always mean a person is a loser? Have we culturally rejected the idea of an honorable loss?
Having experienced different family members experience various modern plagues (AIDS, before the modern drugs, breast cancer, and (non-Alzheimers) dementia), cancer was different because it had these periods of hope, where it really seemed like things could be all right in the end. The other two were/are kind of death marches. I can see why the metaphor of a war, with multiple battles, with hope and/or false hope, with strategizing and warrooms, caught on more for cancer.
I hate as much as anybody the idea that you defeat cancer through attitude (and I just overheard someone going on and on about how she doesn't get sick because she doesn't believe in sickness or accept it - crazy how foolish educated people can be). But I also hate the idea that there is less honor our more shame in a lost struggle than a victorious one. We don't have to win all the time to be worthy.
posted by Salamandrous at 6:50 AM on July 22, 2017 [4 favorites]
Having experienced different family members experience various modern plagues (AIDS, before the modern drugs, breast cancer, and (non-Alzheimers) dementia), cancer was different because it had these periods of hope, where it really seemed like things could be all right in the end. The other two were/are kind of death marches. I can see why the metaphor of a war, with multiple battles, with hope and/or false hope, with strategizing and warrooms, caught on more for cancer.
I hate as much as anybody the idea that you defeat cancer through attitude (and I just overheard someone going on and on about how she doesn't get sick because she doesn't believe in sickness or accept it - crazy how foolish educated people can be). But I also hate the idea that there is less honor our more shame in a lost struggle than a victorious one. We don't have to win all the time to be worthy.
posted by Salamandrous at 6:50 AM on July 22, 2017 [4 favorites]
Someone I worked with for twelve years - basically the twelve years in which I became an adult and learned to be an adult in my work; this wasn't just a casual colleague but someone around whom I basically grew up, and okay I grew up late - died this year of cancer in her early fifties. She was diagnosed about a year ago and she died at the end of March. It was like a wind blew through life and blew her away. It was horrible and cruel and I really miss her, even though she was just someone from work.
posted by Frowner at 10:42 AM on July 22, 2017 [2 favorites]
posted by Frowner at 10:42 AM on July 22, 2017 [2 favorites]
To me, "survivor" doesn't imply special bravery compared to those that have died, any more than calling someone an earthquake survivor means that they were more brave, or more hopeful, or smarter than someone who happened to die.
But we never say so-and-so "lost their battle with tornadoes." In some way that's what MuddDude's cancer journey felt like to me - a natural disaster that hit our home and spared our neighbor.
posted by muddgirl at 11:18 AM on July 22, 2017 [2 favorites]
But we never say so-and-so "lost their battle with tornadoes." In some way that's what MuddDude's cancer journey felt like to me - a natural disaster that hit our home and spared our neighbor.
posted by muddgirl at 11:18 AM on July 22, 2017 [2 favorites]
The ovarian tumor was stage II-C. Amid all the chaos of diagnosis/surgery/chemo, there was a fair bit of emotional trauma, during treatment and thereafter. So to the degree that I see myself as having "won" a "battle," it feels more like having survived a siege. It was a traumatic event in my life; I'm a trauma survivor.
I've been cancer-free for 16+ years.
I may have told this anecdote before. A year or so after my diagnosis, 9/11 happened. I was living in NYC at the time. My shrink specialized in cancer patients, and had an office at Sloan-Kettering. She said that after the attack, many of the doctors and other staff were suddenly (!) thinking and talking about how random and tenuous daily life is.
After working among all kinds of cancer patients every day.
She said she couldn't believe they hadn't internalized that before, and you'd perhaps think that awareness ought to have come sooner to people working in a cancer hospital, but maybe it's not too surprising. On some level there has to be a certain amount of denial. Admitting the sheer randomness of it goes against the grain.
Anyway, I'm not a hero or a warrior; I just managed to not die.
posted by GrammarMoses at 3:40 PM on July 23, 2017 [5 favorites]
I've been cancer-free for 16+ years.
I may have told this anecdote before. A year or so after my diagnosis, 9/11 happened. I was living in NYC at the time. My shrink specialized in cancer patients, and had an office at Sloan-Kettering. She said that after the attack, many of the doctors and other staff were suddenly (!) thinking and talking about how random and tenuous daily life is.
After working among all kinds of cancer patients every day.
She said she couldn't believe they hadn't internalized that before, and you'd perhaps think that awareness ought to have come sooner to people working in a cancer hospital, but maybe it's not too surprising. On some level there has to be a certain amount of denial. Admitting the sheer randomness of it goes against the grain.
Anyway, I'm not a hero or a warrior; I just managed to not die.
posted by GrammarMoses at 3:40 PM on July 23, 2017 [5 favorites]
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Also today, Xeni Jardin has an op-ed on CNN: Why cancer is not a war, fight, or battle.
I've got a number of people around me right now who've just lost someone, or are in the thick of long-term treatment, and everyone is fed up with all those cliches that turn cancer into a failure of virtue so that people can convince themselves that they are too right to get it, and that those who are so punished only lose if they fight wrong, and some people don't deserve treatment or even sympathy if they do any of it wrong.
Cancer is a malfunction of the body, the treatment is with science. The science is not perfect, and it is often complicated science, and sometimes it does not work. You can be scared and weak and not a brave fighter and you can even be a total piece of human garbage, or a saint, and the science is still going to either work or not work or kinda work for a while and then not work anymore, all the same. We need to stop falling back on language that suggests otherwise.
posted by Lyn Never at 11:52 AM on July 21, 2017 [56 favorites]