Cancer Survivors Talk About What It’s Really Like To Have Cancer
November 9, 2015 3:27 AM Subscribe
In this Buzzfeed video, young cancer survivors talk honestly about their experiences. (SLYT) We all spend our lives wondering what it would be like if the doctor told us we had cancer. How would we react? How would our lives change? In this video young cancer survivors talk with candor and some humor about the day they were diagnosed, and what happened after that.
Fair warning: this is emotional stuff, and you may well get weepy before it's through. If you've ever had cancer, you may find yourself nodding along a few times as you hear some things that sound all too familiar. (Oh, man, staggering out of the doctor's office after your diagnosis to go get a Fatburger. It was a big greasy Jack in the Box monster for me.) Whether you've ever had cancer or not, you will almost certainly feel an ache to throw your arms around these people as they frankly describe what they felt and how they got through something that nobody should ever have to get through.
Fair warning: this is emotional stuff, and you may well get weepy before it's through. If you've ever had cancer, you may find yourself nodding along a few times as you hear some things that sound all too familiar. (Oh, man, staggering out of the doctor's office after your diagnosis to go get a Fatburger. It was a big greasy Jack in the Box monster for me.) Whether you've ever had cancer or not, you will almost certainly feel an ache to throw your arms around these people as they frankly describe what they felt and how they got through something that nobody should ever have to get through.
And NOBODY warns you about the epic existential crisis that can hit you after you're pronounced "cured." Nobody tells you OK SO YOU DIDN'T DIE WHAT THE FUCK NOW. YOU HAVE ALL THE SAME PROBLEMS YOU DID BEFORE PLUS A BODY THAT WILL NEVER WORK THE SAME WAY AGAIN. Shoo, girl.
posted by The Underpants Monster at 6:13 AM on November 9, 2015 [11 favorites]
posted by The Underpants Monster at 6:13 AM on November 9, 2015 [11 favorites]
In January, my cousin (39 yrs old) went to the hospital with severe abdominal pain, thinking it was appendicitis. Turns out, it's Stage IV colon cancer. Boom. Her life has been completely changed, almost overnight. She's doing a weekly blog about how she's feeling, the whole chemo process, lab results, etc etc. Not only do the side effects sound horrible, the weekly slog of chemo, doctors, managing her work hours, just the extra daily tedium of everything is overwhelming.
She does not consider herself a hero at all, and frankly seems a little uncomfortable with the extra attention. From what I can tell, she's just trying to get through her new situation, one day at a time.
It's been said many times here, but again for emphasis: Fuck cancer.
posted by Fig at 7:53 AM on November 9, 2015 [2 favorites]
She does not consider herself a hero at all, and frankly seems a little uncomfortable with the extra attention. From what I can tell, she's just trying to get through her new situation, one day at a time.
It's been said many times here, but again for emphasis: Fuck cancer.
posted by Fig at 7:53 AM on November 9, 2015 [2 favorites]
I feel like the modern cancer story is - you get cancer, you fight as hard as you can, and then you either are cured or you die. No one likes to talk about all the people living in the middle - who are in remission now but may not be in 10 years, or who are even actively living with and managing cancer for the long term. Or think about long-term side effects from surgery, radiation, and chemotherapy. My husband is at a pretty high risk of developing glaucoma, macular degeneration, jaw bone loss and tooth decay, and secondary cancers like sarcomas in the field of the radiation treatment. And that's not even mentioning the side effects that he just lives with right now, over a year after treatment. Everyone seems to just want to hear that he's beat cancer.
Younger cancer survivors are at a higher risk of long-term complications, because they're expected to live longer after treatment and because younger bodies can still be developing.
posted by muddgirl at 8:17 AM on November 9, 2015 [5 favorites]
Younger cancer survivors are at a higher risk of long-term complications, because they're expected to live longer after treatment and because younger bodies can still be developing.
posted by muddgirl at 8:17 AM on November 9, 2015 [5 favorites]
YOU HAVE ALL THE SAME PROBLEMS YOU DID BEFORE PLUS A BODY THAT WILL NEVER WORK THE SAME WAY AGAIN.
QFT.
Prostate cancer treatment in particular really fucks up your body and self-esteem. Few people understand what it's like because talking about peeing and sex just isn't done in polite company. Doctors tend to focus (understandably) on saving the patient's life instead of discussing "side effects," and the resulting dysfunction comes as a shameful shock.
In my case, I needed a penile implant in order to resume having sex. Mrs. Wallflower and I discussed it and agree that it's similar to prosthetic surgery for women after a mastectomy, which people talk about with no shame or tittering, so I've been fairly open about it, at least among our close friends.
And now all of MetaFilter knows why the "gender" field in my profile says "hydraulic-assisted."
posted by Johnny Wallflower at 8:17 AM on November 9, 2015 [13 favorites]
QFT.
Prostate cancer treatment in particular really fucks up your body and self-esteem. Few people understand what it's like because talking about peeing and sex just isn't done in polite company. Doctors tend to focus (understandably) on saving the patient's life instead of discussing "side effects," and the resulting dysfunction comes as a shameful shock.
In my case, I needed a penile implant in order to resume having sex. Mrs. Wallflower and I discussed it and agree that it's similar to prosthetic surgery for women after a mastectomy, which people talk about with no shame or tittering, so I've been fairly open about it, at least among our close friends.
And now all of MetaFilter knows why the "gender" field in my profile says "hydraulic-assisted."
posted by Johnny Wallflower at 8:17 AM on November 9, 2015 [13 favorites]
muddgirl:
"I feel like the modern cancer story is - you get cancer, you fight as hard as you can, and then you either are cured or you die. ........ Or think about long-term side effects from surgery, radiation, and chemotherapy."
Yep. The part about fighting annoys me personally. I didn't really think about it as fighting. I spent about seven months being incredibly tired and foggy brained. Mostly I just slept. I endured because what choice was there? It was difficult but doable. And did all the ones who did what I did but didn't survive somehow lose "the fight". If it helps someone to think it as a fight they are welcome to it, but I don't like that terminology. I don't like talking about survivors either. I won't know if I survived cancer until the day I die.
People living with cancer for long term get often forgotten. I know people who have lived with recurrent and/or metastatic cancer for over eight years and are still going strong. Compared to them I was a tourist.
And yes, the long-term effects. Many people seem to think that once you're done with treatments, it's all in the past. Most breast cancer patients will be continuing their antiestrogen treatments for 5-10 years with many and varied side-effects. The effects of chemo can take years to go away and surgery takes away parts of your body you'll never have back. Every little ache will make you wonder if it's the cancer returning.
"Younger cancer survivors are at a higher risk of long-term complications, because they're expected to live longer after treatment and because younger bodies can still be developing."
And younger people have, potentially, more time to give the cancer a chance to return. And, at least in the case of breast cancer, younger people often have quite aggressive types of cancer.
What I especially liked about this video was that it showed different reactions to and ways of dealing with cancer. It's ok to be sad and read Didion and not even try to cheer up. It ok to crack jokes or find the beauty and joy in life. What ever gets you through the dark days.
posted by severiina at 8:58 AM on November 9, 2015 [5 favorites]
"I feel like the modern cancer story is - you get cancer, you fight as hard as you can, and then you either are cured or you die. ........ Or think about long-term side effects from surgery, radiation, and chemotherapy."
Yep. The part about fighting annoys me personally. I didn't really think about it as fighting. I spent about seven months being incredibly tired and foggy brained. Mostly I just slept. I endured because what choice was there? It was difficult but doable. And did all the ones who did what I did but didn't survive somehow lose "the fight". If it helps someone to think it as a fight they are welcome to it, but I don't like that terminology. I don't like talking about survivors either. I won't know if I survived cancer until the day I die.
People living with cancer for long term get often forgotten. I know people who have lived with recurrent and/or metastatic cancer for over eight years and are still going strong. Compared to them I was a tourist.
And yes, the long-term effects. Many people seem to think that once you're done with treatments, it's all in the past. Most breast cancer patients will be continuing their antiestrogen treatments for 5-10 years with many and varied side-effects. The effects of chemo can take years to go away and surgery takes away parts of your body you'll never have back. Every little ache will make you wonder if it's the cancer returning.
"Younger cancer survivors are at a higher risk of long-term complications, because they're expected to live longer after treatment and because younger bodies can still be developing."
And younger people have, potentially, more time to give the cancer a chance to return. And, at least in the case of breast cancer, younger people often have quite aggressive types of cancer.
What I especially liked about this video was that it showed different reactions to and ways of dealing with cancer. It's ok to be sad and read Didion and not even try to cheer up. It ok to crack jokes or find the beauty and joy in life. What ever gets you through the dark days.
posted by severiina at 8:58 AM on November 9, 2015 [5 favorites]
Oh, man, staggering out of the doctor's office after your diagnosis to go get a Fatburger. It was a big greasy Jack in the Box monster for me
I got diagnosed at 30 years old. The night before I had tongue surgery to excise the cancer site, I went to the beach and ate a delicious expensive steak. I like to think I still remember what it tasted and felt like.
I don't know that anyone can prepare you for the weird bottomless dread that accompanies finding a new lump or experiencing an unusual pain, but I have found that the dread decreases and the fear declines over time. More a matter of quiet acceptance than fearlessness, I admit.
Still clean a year and a half later! Fuck cancer.
posted by tmt at 10:45 AM on November 9, 2015 [8 favorites]
I got diagnosed at 30 years old. The night before I had tongue surgery to excise the cancer site, I went to the beach and ate a delicious expensive steak. I like to think I still remember what it tasted and felt like.
I don't know that anyone can prepare you for the weird bottomless dread that accompanies finding a new lump or experiencing an unusual pain, but I have found that the dread decreases and the fear declines over time. More a matter of quiet acceptance than fearlessness, I admit.
Still clean a year and a half later! Fuck cancer.
posted by tmt at 10:45 AM on November 9, 2015 [8 favorites]
I think, as that video shows, you can ask 50 different cancer patients what it's like to have cancer and you'll get 50 different answers.
I found out I had cancer on November 5, 2013 when CT scan results came back for what I thought was asthma (that ran in my family) which turned out to be cancer that was misdiagnosed for years. By the time pathology figured out what was happening, I had stage 4 metastatic melanoma that got inside and basically invaded every organ from my neck to my groin, and especially the superior vena cava of my heart. The tumors were constricting that vessel not allowing deoxygenated blood to go get oxygen again. So having cancer for me was being choked to death in slow motion.
I had basically 4 months to live, but I got into a clinical trial, and it worked. No more tumors. What I'm left with is basically scar tissue in my lungs that reduce my lung capacity and make me cough all the time, but not to the point where I can't function. I can still work, exercise, and live a normal life. So I got that going for me.
What occurred between diagnosis and now was basically several weeks of radiation followed by chemo. My chemo didn't even have the typical side effects of regular chemo (my chemo was investigative), but it still drains you, and radiation was worse.... it let's you feel what Superman feels when Green Kryptonite is in the area. It literally just sucks the life out of you. It's just an exercise in seeing which has more endurance, you or the radiation.
posted by prepmonkey at 10:56 AM on November 9, 2015 [7 favorites]
I found out I had cancer on November 5, 2013 when CT scan results came back for what I thought was asthma (that ran in my family) which turned out to be cancer that was misdiagnosed for years. By the time pathology figured out what was happening, I had stage 4 metastatic melanoma that got inside and basically invaded every organ from my neck to my groin, and especially the superior vena cava of my heart. The tumors were constricting that vessel not allowing deoxygenated blood to go get oxygen again. So having cancer for me was being choked to death in slow motion.
I had basically 4 months to live, but I got into a clinical trial, and it worked. No more tumors. What I'm left with is basically scar tissue in my lungs that reduce my lung capacity and make me cough all the time, but not to the point where I can't function. I can still work, exercise, and live a normal life. So I got that going for me.
What occurred between diagnosis and now was basically several weeks of radiation followed by chemo. My chemo didn't even have the typical side effects of regular chemo (my chemo was investigative), but it still drains you, and radiation was worse.... it let's you feel what Superman feels when Green Kryptonite is in the area. It literally just sucks the life out of you. It's just an exercise in seeing which has more endurance, you or the radiation.
posted by prepmonkey at 10:56 AM on November 9, 2015 [7 favorites]
"Survivor" is the worst kind of patronizing. Worse than the overuse of "hero" in contemporary America. I was more upset getting called that when I had cancer than when people forwarded me pseudoscientific cancer cures.
posted by groda at 11:38 AM on November 9, 2015 [3 favorites]
posted by groda at 11:38 AM on November 9, 2015 [3 favorites]
Last year, my wife had breast cancer. After 4 chemo treatments, a double mastectomy and reconstruction, then 4 more chemo treatments, she was declared cancer free. It was and continues to be tough for her but she is doing well. If you want a small understanding of what that was like, you can go to her CaringBridge page here . She was very forthcoming with how she was feeling during the process. And I'm here to say that the spouse and/or loved ones suffer a lot too. For all of the suffering that we went through, I can with great emotion say, Fuck Cancer.
posted by CuJoe at 11:48 AM on November 9, 2015 [3 favorites]
posted by CuJoe at 11:48 AM on November 9, 2015 [3 favorites]
In my case, I got cancer in college, when I was 23. There was a two or three week period between starting to seriously worry about the lump sticking out of my neck and the diagnosis. I was an American studying in Sweden, and had been for all five years of my studies. Each year I had to renew my student visa and present proof that I'd passed a minimum number of course credits the previous year.
Over the course of the whole half-year treatment, and the years of subsequent freak-outs over suspected relapses, I don't think I was every actually worried about dying. It was always me worrying that it would prevent me from renewing that nagging student visa, and sinking all the plans I had for my life.
I ended up studying full-time through my chemo, but I don't remember much of it. I don't think I took anything terribly important, though. A totally irrelevant Norwegian language course I took on the side for fun, thanks to a loophole in Swedish immigration law, put me *just* over the minimum credits for renewal.
posted by groda at 11:50 AM on November 9, 2015 [3 favorites]
Over the course of the whole half-year treatment, and the years of subsequent freak-outs over suspected relapses, I don't think I was every actually worried about dying. It was always me worrying that it would prevent me from renewing that nagging student visa, and sinking all the plans I had for my life.
I ended up studying full-time through my chemo, but I don't remember much of it. I don't think I took anything terribly important, though. A totally irrelevant Norwegian language course I took on the side for fun, thanks to a loophole in Swedish immigration law, put me *just* over the minimum credits for renewal.
posted by groda at 11:50 AM on November 9, 2015 [3 favorites]
New ways to think about old terms. Survival rate. Statistics. Even 50/50 is meaningless if you are on the wrong side of the coin.
Remission....they just put another thread on the sword hanging over your neck. For example, in a couple of months I'll go get another bone survey to see if those changes in my bones are due to arthritis or myeloma.
A few years ago, my stats told me I'd probably be dead in 48 months. I have survived eleven years (next month). I'm hoping the geriatric issues I've endured the past few months won't get in the way of the replacement procedure on the other hip. I'd love to get back into pole vaulting. Well, climbing stairs would be good, too. I have a few after-market parts now (pacemaker, hip joint).
You don't really fight cancer. That's the researcher's job. You endure. Chemicals or radiation give hope for a few more productive years, the ass kicking is what you accept for the extra time. Months. Days. Whatever I can get. In the meantime I get older. I can live with that.
Also: crackpot cancer cures are things best kept to yourself. I have cut loose a nephew on account of his persistence in this vein. I don't need any shark liver or silver plating, thank you.
posted by mule98J at 12:33 PM on November 9, 2015 [4 favorites]
Remission....they just put another thread on the sword hanging over your neck. For example, in a couple of months I'll go get another bone survey to see if those changes in my bones are due to arthritis or myeloma.
A few years ago, my stats told me I'd probably be dead in 48 months. I have survived eleven years (next month). I'm hoping the geriatric issues I've endured the past few months won't get in the way of the replacement procedure on the other hip. I'd love to get back into pole vaulting. Well, climbing stairs would be good, too. I have a few after-market parts now (pacemaker, hip joint).
You don't really fight cancer. That's the researcher's job. You endure. Chemicals or radiation give hope for a few more productive years, the ass kicking is what you accept for the extra time. Months. Days. Whatever I can get. In the meantime I get older. I can live with that.
Also: crackpot cancer cures are things best kept to yourself. I have cut loose a nephew on account of his persistence in this vein. I don't need any shark liver or silver plating, thank you.
posted by mule98J at 12:33 PM on November 9, 2015 [4 favorites]
"Survivor" is the worst kind of patronizing. Worse than the overuse of "hero" in contemporary America. I was more upset getting called that when I had cancer than when people forwarded me pseudoscientific cancer cures.
You don't really fight cancer. That's the researcher's job. You endure.
I know, right? The "survivor" label kind of weirds me out, too. I mean, I did as much research as I was well enough to do, followed doctors' orders as best I could, but for the most part, I *personally* feel like all I did was just lie there and not die. I know everybody means it in the best possible way, and the absolute last thing I would ever want to do is put a damper on anything that makes anybody dealing with cancer or their loved ones feel even just a tiny bit less shitty. Of all the things I expected cancer to be, "awkward" just wasn't one of them.
posted by The Underpants Monster at 12:43 PM on November 9, 2015 [5 favorites]
You don't really fight cancer. That's the researcher's job. You endure.
I know, right? The "survivor" label kind of weirds me out, too. I mean, I did as much research as I was well enough to do, followed doctors' orders as best I could, but for the most part, I *personally* feel like all I did was just lie there and not die. I know everybody means it in the best possible way, and the absolute last thing I would ever want to do is put a damper on anything that makes anybody dealing with cancer or their loved ones feel even just a tiny bit less shitty. Of all the things I expected cancer to be, "awkward" just wasn't one of them.
posted by The Underpants Monster at 12:43 PM on November 9, 2015 [5 favorites]
you can ask 50 different cancer patients what it's like to have cancer and you'll get 50 different answers.
But it was striking to me how often, watching this clip, I was reminded of things that happened to me. Our stories are different, but humans being humans, we have a lot in common.
I have zero problem with the survivor tag or calling cancer a battle. Just not giving in to total panic and despair, that was a battle. I had to do everything I could to stay sane and face this thing, and that was a battle. I'm not dead, so I survived.
If other people reject those labels, fine. But I see a lot of things where people who've had cancer get really angry at people calling them survivors or calling cancer a battle, and I think it's important to say that not everybody who has or has had cancer feels that way. Calling a cancer survivor a survivor is not universally offensive, and some of us are touched when you tell us you think we're brave. Maybe somebody who is terrified will gain something from hearing that they're demonstrating bravery in getting through this.
posted by Ursula Hitler at 4:48 PM on November 9, 2015 [3 favorites]
But it was striking to me how often, watching this clip, I was reminded of things that happened to me. Our stories are different, but humans being humans, we have a lot in common.
I have zero problem with the survivor tag or calling cancer a battle. Just not giving in to total panic and despair, that was a battle. I had to do everything I could to stay sane and face this thing, and that was a battle. I'm not dead, so I survived.
If other people reject those labels, fine. But I see a lot of things where people who've had cancer get really angry at people calling them survivors or calling cancer a battle, and I think it's important to say that not everybody who has or has had cancer feels that way. Calling a cancer survivor a survivor is not universally offensive, and some of us are touched when you tell us you think we're brave. Maybe somebody who is terrified will gain something from hearing that they're demonstrating bravery in getting through this.
posted by Ursula Hitler at 4:48 PM on November 9, 2015 [3 favorites]
"Survivor" irks me, but the missus (who had breast cancer) uses it. She also hates Pinktober and everything-has-a-reason platitudes, so in conclusion, cancer-having is a land of contrast.
posted by Johnny Wallflower at 5:27 PM on November 9, 2015 [4 favorites]
posted by Johnny Wallflower at 5:27 PM on November 9, 2015 [4 favorites]
Fuck cancer.
Fighting cancer is not a struggle in the usual sense. Fighting cancer is enduring. Fighting cancer is mustering a smile and a joke for your carer when you feel like crap, because it's hard enough for them taking care of your needs without you cranking at them on top of it. It's faithfully swallowing bitter pills every day that will make you feel worse, when you'd rather just flush them. It's stepping up to that chair even though you feel nauseous just thinking about the poison that will be pumped into you. It's about being determined to see the process through to success, to live on while the cancer dies. And once the cancer is dead, if you are "cured", then you have to fight on through a year or more of aftereffects from the chemo.
But it has its compensations. Because all those problems that you already had beforehand, that you still have to face? An awful lot of them will turn out to be less important than you thought. Because in order to have problems, you have to be alive.
posted by Autumn Leaf at 11:58 PM on November 13, 2015 [2 favorites]
Fighting cancer is not a struggle in the usual sense. Fighting cancer is enduring. Fighting cancer is mustering a smile and a joke for your carer when you feel like crap, because it's hard enough for them taking care of your needs without you cranking at them on top of it. It's faithfully swallowing bitter pills every day that will make you feel worse, when you'd rather just flush them. It's stepping up to that chair even though you feel nauseous just thinking about the poison that will be pumped into you. It's about being determined to see the process through to success, to live on while the cancer dies. And once the cancer is dead, if you are "cured", then you have to fight on through a year or more of aftereffects from the chemo.
But it has its compensations. Because all those problems that you already had beforehand, that you still have to face? An awful lot of them will turn out to be less important than you thought. Because in order to have problems, you have to be alive.
posted by Autumn Leaf at 11:58 PM on November 13, 2015 [2 favorites]
You all just made me feel normal for the first time in nearly a year. Thank you for that.
I don't care much for survivor or fight, although it's been hard and I have survived. Mostly it's isolating and paranoia inducing for me (what was that twinge?) and I feel some decent imposter syndrome kind of stuff when people talk about my attitude or my "courage". I get irrationally angry at people on tv who mention a loved one who has died from cancer as an inspiring force to win a competition/accomplish a task/become famous. And finally, I'm furious that one of the lessons I learned from chemo is just how much easier getting ready is when you're unconcerned with typical female hair removal tasks.
posted by donnagirl at 9:00 PM on November 15, 2015 [2 favorites]
I don't care much for survivor or fight, although it's been hard and I have survived. Mostly it's isolating and paranoia inducing for me (what was that twinge?) and I feel some decent imposter syndrome kind of stuff when people talk about my attitude or my "courage". I get irrationally angry at people on tv who mention a loved one who has died from cancer as an inspiring force to win a competition/accomplish a task/become famous. And finally, I'm furious that one of the lessons I learned from chemo is just how much easier getting ready is when you're unconcerned with typical female hair removal tasks.
posted by donnagirl at 9:00 PM on November 15, 2015 [2 favorites]
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This clip felt real and valuable to me, and I hoped that others would feel the same way.
posted by Ursula Hitler at 3:41 AM on November 9, 2015 [3 favorites]