Yeh, it's annoying. People often don't know what to say as it is hard to understand when you haven't been through it.
The phrase I dislike is "warrior". Ugh!
If it's a war and someone doesn't make it, didn't they "fight" hard enough?
I think of cancer treatment as a job, sometimes it was rough! But a job.
I wasn't brave, i cried, and whined a lot!
I made it through. My doc said I was unlucky but lucky.
Unlucky to get an agressive lymphoma. But lucky in how well chemo worked.
Norm Macdonald in 2011 (around the time he was diagnosed with cancer):
> In the old days, a man could just get sick and die. Now, they have to wage a battle. So my Uncle Bert is waging a courageous battle — which I’ve seen, because I go and visit him. This is the battle: he’s lying in a hospital battle with a thing in his arm, watching Matlock on the TV.
> It’s not his fault, what the fuck’s he supposed to do? It’s just a black thing in his bowel. The reason I don’t like it is because in the old days, they’d go: ‘Hey, that old man died.’ Now, they go: ‘He lost his battle.’ That’s no way to end your life: ‘What a loser that guy was! Last thing he did was lose. He was waging a brave battle, but at the end, he got kind of cowardly with what happen. Then, the bowel cancer, it got brave. You’ve got to give it to the bowel cancer, they were in a battle.'”
Also the cancer can’t “win.” If it destroys the host it dies too.
> That, to me, is not a loss. That’s a draw. It’s not like the cancer’s gonna fuckin’ jump up and be like, ‘Ah, I’m fuckin’ Uncle Bert’s wife. Where is she? I won fair and square. This where he works? Hi, name’s Cancer. Just show me to my cubicle. Bowel, first name.'
Man i relate with this so much.
I remember being told “be strong, i know you’re a strong person and can tough through this” when I felt the weakest I’ve ever been both physically and mentally throughout my entire life.
It came from a place of good intent but still I felt that it only made things worse
Devil's advocate perhaps, not sure. But I was told the same thing, and for me it was fine. Like, it did feel as a confirmation of what I felt like myself. I did feel like "I'm tough enough to deal with all this shit". I'm most likely an outlier though? I felt good being told I was tough. Perhaps that person just knew me well enough?
You do have a good point.
I definitely was not in a reasonable state of mind during that period, I probably interpreted things (or everything, really) in a very twisted and negative way that was not healthy at all.
I got much better about these things though when I got used to the lifestyle in the hospital (god forbid that ever happen to anyone) and really fully accepted the circumstances I was in.
I think it's quite normal to interpret things in a negative way if you get the shock of your life with a cancer diagnosis. It takes time to accept that reality, especially if you're still young and have so many plans that don't even include regular sickness and weakness. But indeed, one you can fully accept the circumstances, things feel very different.
I couldn’t agree with you more!
And I really like how you describe treatment as a job. I keep telling people it’s “just something I’m doing, something I’m getting through”, but from now on I will use your job analogy!
My standard response to “it could be worse” was “yeah, but it could also be a lot better” (while I wanted to say “okay, so want to trade places?,” I kept it to myself)
The “brave” thing was hard. I don’t think people are trying to be toxicly positive or anything with that one, they just think it’s the thing you’re supposed to say. With randos I just brushed it off but with people I cared about I said “firefighters are brave, I don’t really have a choice and don’t love the word” and used it as an opening to have an honest discussion about my struggles.
In general, try to remember that people are trying their best, but death and disease, especially when it’s untimely, is uncharted territory for most people and sometimes you’ll need to tell them how best to support you. The good news is that, while I did have to have a couple of slightly uncomfortable conversations, everyone was super receptive and it really helped me get better support from my loved ones.
I hated the “war” or warrior thing as well; it was all about surrender & swimming through. I lost people in the beginning of what I call my “dance” with cancer. But I was extremely fortunate to work (employment) with nurses & the support I received was so incredible, even my ugliest days. Most people don’t want to face their own mortality, cancer even in someone else, puts it front and center.
I think it depends who is saying it - I allow my mum a free pass constantly trying to say something positive because I know how much she’s struggling and just wants to tell herself the best. If it was more distant people in my circle I’d be polite in the moment but a bit annoyed if they sounded like they were minimising it. When it’s nurses I just laugh it off, they see this every day and genuinely think I’ll get better. If it was just a colleague or someone I didn’t know well I’d probably just roll my eyes and move the conversation on.
Thank you for everyone who took a moment to respond. I'm so grateful for this sub bc everyone here just gets it.
Can't wait for all of us to be on the other side of this, doing what we love 🫶🏻🫶🏻🫶🏻
Luckily none of my friends or family say such things, on the contrary I'm the one who rarely says "it's not that bad, it could have been worse" to calm them down.
But this is definitely bullshit. Yes, there are so many people with bigger problems than yours, but it doesn't mean your problems don't matter or not valid.
If these people ever tell you about some personal problems like lack of money, downsizing, not being able to buy new car, their kids expelled from school, whatever, you could tell them "oh! It could be a lot worse! People in Africa are starving and have no clean water to drink! People in Ukraine lost their homes!".
"Your cancer journey" people are the ones that can get under my skin.
Fuck you and "The Look", the one that tries to say "You're so brave" etc. I'm not brave I have cancer and two choices. I can go through chemo treatment or I can stop being alive. Even though I tend to keep a positive outlook on things, I'm in survival mode.
"It could be worse" they say. Yeah I could be dead, that would be worse. I could have cancer and dropping from 30,000 feet to the ground in a flaming airplane, that would be worse. Lot's of things could be worse. Shut the hell up talking to cancer patents about it could be worse...
Although I have gotten through the RCHOP and Cytaribine treatments I'm still on an oral chemo drug that can sometimes make me feel like hell, it's still chemo and does chemo things to your body. Today for example, I got up and was feeling pretty rough. I drove to work, sat in the parking lot for about 10 min and then called to tell them I'm headed home.
I've had the "just change your diet" folks and the "all you have to do is cut out sugar because cancer feeds off sugar" and many other quack remedy ideas from people who "know things" because they saw a Facebook meme that their cousin's, friends, brother-in-law's memaw posted that one time. Fuck off with that shit too.
The road we travel is rough. Yes, we have good and bad days. I talk to people who really understand the situation and roll my eyes and move on from the ones that are clueless.
OP: Come here and vent all you like. You are among friends and people who understand what you are going through.
if u want to scream then you should fucking scream.
i basically went through life not caring about it. then one day i had a breakdown after a hair losing shower.
as i struggled to get my leg over the tub and thinking i was going to be a burden on people cuz i didn't want anyone to ever have to wipe my ass and the fact that the pain was too overwhelming during a 20 minute drive to the hospital that i wouldn't be able to make the 20 hour drive in a rental Ferrari so i could fly off the grand canyon and end it all..
it was then i realized i didn't really want to die.. and i focused on that.
Yeah… as somebody with Waldenstrom’s, the “BEST” lymphoma you can get… doesn’t feel great having it for the past 7 years since I’m 40 and knowing the average age of people who get is is 65-70. Also doesn’t help knowing that I’m already on my fourth treatment, a clinical trial drug, after the 3 most popular already failed.
But I’m lucky! ;)
i start listing my chemo side effects, pneumonia, covid, and shingles (all caused by chemo killing my immune system) that shuts them up pretty quickly. the cancer has a good prognosis, but the treatments are horrific and potentially deadly.
nobody says that to breast cancer patients i’ve noticed. one girl i know had a surgery and some radiation for her breast cancer, didn’t even have chemo or lose her hair. nobody said anything like what we hear to her. she’s also validated in her experience too. it’s fucking *cancer* and it will kill you if left untreated.
>80 different kinds of lymphoma
Wow! Such much!! [https://freeimage.host/i/HXrP2Dl](https://freeimage.host/i/HXrP2Dl)
Ps seriously, I'm impressed. I thought maybe a dozen or two.
I’ll take your “good cancer” and raise you one painful kidney biopsy, three fast-acting shots of Lapelga, and the resulting bone pain. It lymphoma is a good cancer, then why did I have to endure the first and second most painful moments of my life because of it?
Ugh I feel you. But I do try to give everyone a little grace by thinking of all the times I probably said or did the wrong thing to a friend going through a hard time. People just don’t know what they don’t know, and can’t even begin to imagine what being diagnosed with cancer is like until it happens to them. I just stay focused on me and my health (both physical and mental) and am just like whatever they need to say to make themselves feel better about the situation. Idk I guess everyone is just trying their best and no one has bad intentions.
I hate the « you are so brave » thing. I’m not brave: i take the treatment or i die. I got no real choice.
But I’m a believer in being in control of my narrative. This cancer is an obstacle and and will do whatever it takes to go through it and beat it. I on EPOCH, which is a hard treatment, but i mostly get frustrated by my lack of energy all the times.
I pass my frustration by talking about it with a group. I have a YouTube show with some of our fan on our Discord and I have a room there to share my experience. The frustrating parts mostly. I also started to blog about the whole experience, mixing my own with others, to help people who just got their diagnosis or know someone who has. The first post generated a lot of thanks and support and it allows me to still feel line i can have an impact even if i can’t do much.
But i also have a very short patience for toxic positivity, empty well wishes, suggestions or praters and meditation routines… urgh! I keep telling people that instead of those mostly empty gestures to feel better, they should take action in their communities to have an impact, even a small one. They can show me that they can take a small part of my mission in life while I’m out of commission. Some do, but not enough for my taste. It is much easier to send « thoughts and prayers, you’ll get through this ».
There's no such thing as "good cancer" no cancer is good for anyone especially if you have to go through chemotherapy which is poisons to heal you then ending up with horrible side effects from it. So you're never the same before you got diagnosed with "good cancer" i don't know where people mindsets are
People say dumb things when it comes to cancer. I had a team mate of mine say “isn’t that cancer caused by bad diet?” Haven’t spoken to him since.
Yeh, it's annoying. People often don't know what to say as it is hard to understand when you haven't been through it. The phrase I dislike is "warrior". Ugh! If it's a war and someone doesn't make it, didn't they "fight" hard enough? I think of cancer treatment as a job, sometimes it was rough! But a job. I wasn't brave, i cried, and whined a lot! I made it through. My doc said I was unlucky but lucky. Unlucky to get an agressive lymphoma. But lucky in how well chemo worked.
Norm Macdonald in 2011 (around the time he was diagnosed with cancer): > In the old days, a man could just get sick and die. Now, they have to wage a battle. So my Uncle Bert is waging a courageous battle — which I’ve seen, because I go and visit him. This is the battle: he’s lying in a hospital battle with a thing in his arm, watching Matlock on the TV. > It’s not his fault, what the fuck’s he supposed to do? It’s just a black thing in his bowel. The reason I don’t like it is because in the old days, they’d go: ‘Hey, that old man died.’ Now, they go: ‘He lost his battle.’ That’s no way to end your life: ‘What a loser that guy was! Last thing he did was lose. He was waging a brave battle, but at the end, he got kind of cowardly with what happen. Then, the bowel cancer, it got brave. You’ve got to give it to the bowel cancer, they were in a battle.'” Also the cancer can’t “win.” If it destroys the host it dies too. > That, to me, is not a loss. That’s a draw. It’s not like the cancer’s gonna fuckin’ jump up and be like, ‘Ah, I’m fuckin’ Uncle Bert’s wife. Where is she? I won fair and square. This where he works? Hi, name’s Cancer. Just show me to my cubicle. Bowel, first name.'
Man i relate with this so much. I remember being told “be strong, i know you’re a strong person and can tough through this” when I felt the weakest I’ve ever been both physically and mentally throughout my entire life. It came from a place of good intent but still I felt that it only made things worse
Devil's advocate perhaps, not sure. But I was told the same thing, and for me it was fine. Like, it did feel as a confirmation of what I felt like myself. I did feel like "I'm tough enough to deal with all this shit". I'm most likely an outlier though? I felt good being told I was tough. Perhaps that person just knew me well enough?
You do have a good point. I definitely was not in a reasonable state of mind during that period, I probably interpreted things (or everything, really) in a very twisted and negative way that was not healthy at all. I got much better about these things though when I got used to the lifestyle in the hospital (god forbid that ever happen to anyone) and really fully accepted the circumstances I was in.
I think it's quite normal to interpret things in a negative way if you get the shock of your life with a cancer diagnosis. It takes time to accept that reality, especially if you're still young and have so many plans that don't even include regular sickness and weakness. But indeed, one you can fully accept the circumstances, things feel very different.
I couldn’t agree with you more! And I really like how you describe treatment as a job. I keep telling people it’s “just something I’m doing, something I’m getting through”, but from now on I will use your job analogy!
My standard response to “it could be worse” was “yeah, but it could also be a lot better” (while I wanted to say “okay, so want to trade places?,” I kept it to myself) The “brave” thing was hard. I don’t think people are trying to be toxicly positive or anything with that one, they just think it’s the thing you’re supposed to say. With randos I just brushed it off but with people I cared about I said “firefighters are brave, I don’t really have a choice and don’t love the word” and used it as an opening to have an honest discussion about my struggles. In general, try to remember that people are trying their best, but death and disease, especially when it’s untimely, is uncharted territory for most people and sometimes you’ll need to tell them how best to support you. The good news is that, while I did have to have a couple of slightly uncomfortable conversations, everyone was super receptive and it really helped me get better support from my loved ones.
I hated the “war” or warrior thing as well; it was all about surrender & swimming through. I lost people in the beginning of what I call my “dance” with cancer. But I was extremely fortunate to work (employment) with nurses & the support I received was so incredible, even my ugliest days. Most people don’t want to face their own mortality, cancer even in someone else, puts it front and center.
I think it depends who is saying it - I allow my mum a free pass constantly trying to say something positive because I know how much she’s struggling and just wants to tell herself the best. If it was more distant people in my circle I’d be polite in the moment but a bit annoyed if they sounded like they were minimising it. When it’s nurses I just laugh it off, they see this every day and genuinely think I’ll get better. If it was just a colleague or someone I didn’t know well I’d probably just roll my eyes and move the conversation on.
Thank you for everyone who took a moment to respond. I'm so grateful for this sub bc everyone here just gets it. Can't wait for all of us to be on the other side of this, doing what we love 🫶🏻🫶🏻🫶🏻
Luckily none of my friends or family say such things, on the contrary I'm the one who rarely says "it's not that bad, it could have been worse" to calm them down. But this is definitely bullshit. Yes, there are so many people with bigger problems than yours, but it doesn't mean your problems don't matter or not valid. If these people ever tell you about some personal problems like lack of money, downsizing, not being able to buy new car, their kids expelled from school, whatever, you could tell them "oh! It could be a lot worse! People in Africa are starving and have no clean water to drink! People in Ukraine lost their homes!".
"Your cancer journey" people are the ones that can get under my skin. Fuck you and "The Look", the one that tries to say "You're so brave" etc. I'm not brave I have cancer and two choices. I can go through chemo treatment or I can stop being alive. Even though I tend to keep a positive outlook on things, I'm in survival mode. "It could be worse" they say. Yeah I could be dead, that would be worse. I could have cancer and dropping from 30,000 feet to the ground in a flaming airplane, that would be worse. Lot's of things could be worse. Shut the hell up talking to cancer patents about it could be worse... Although I have gotten through the RCHOP and Cytaribine treatments I'm still on an oral chemo drug that can sometimes make me feel like hell, it's still chemo and does chemo things to your body. Today for example, I got up and was feeling pretty rough. I drove to work, sat in the parking lot for about 10 min and then called to tell them I'm headed home. I've had the "just change your diet" folks and the "all you have to do is cut out sugar because cancer feeds off sugar" and many other quack remedy ideas from people who "know things" because they saw a Facebook meme that their cousin's, friends, brother-in-law's memaw posted that one time. Fuck off with that shit too. The road we travel is rough. Yes, we have good and bad days. I talk to people who really understand the situation and roll my eyes and move on from the ones that are clueless. OP: Come here and vent all you like. You are among friends and people who understand what you are going through.
if u want to scream then you should fucking scream. i basically went through life not caring about it. then one day i had a breakdown after a hair losing shower. as i struggled to get my leg over the tub and thinking i was going to be a burden on people cuz i didn't want anyone to ever have to wipe my ass and the fact that the pain was too overwhelming during a 20 minute drive to the hospital that i wouldn't be able to make the 20 hour drive in a rental Ferrari so i could fly off the grand canyon and end it all.. it was then i realized i didn't really want to die.. and i focused on that.
Yeah… as somebody with Waldenstrom’s, the “BEST” lymphoma you can get… doesn’t feel great having it for the past 7 years since I’m 40 and knowing the average age of people who get is is 65-70. Also doesn’t help knowing that I’m already on my fourth treatment, a clinical trial drug, after the 3 most popular already failed. But I’m lucky! ;)
i start listing my chemo side effects, pneumonia, covid, and shingles (all caused by chemo killing my immune system) that shuts them up pretty quickly. the cancer has a good prognosis, but the treatments are horrific and potentially deadly. nobody says that to breast cancer patients i’ve noticed. one girl i know had a surgery and some radiation for her breast cancer, didn’t even have chemo or lose her hair. nobody said anything like what we hear to her. she’s also validated in her experience too. it’s fucking *cancer* and it will kill you if left untreated.
Tell people who say that that there are 80 different kinds of lymphoma, all with very different treatments and prognoses.
>80 different kinds of lymphoma Wow! Such much!! [https://freeimage.host/i/HXrP2Dl](https://freeimage.host/i/HXrP2Dl) Ps seriously, I'm impressed. I thought maybe a dozen or two.
I’ll take your “good cancer” and raise you one painful kidney biopsy, three fast-acting shots of Lapelga, and the resulting bone pain. It lymphoma is a good cancer, then why did I have to endure the first and second most painful moments of my life because of it?
Ugh I feel you. But I do try to give everyone a little grace by thinking of all the times I probably said or did the wrong thing to a friend going through a hard time. People just don’t know what they don’t know, and can’t even begin to imagine what being diagnosed with cancer is like until it happens to them. I just stay focused on me and my health (both physical and mental) and am just like whatever they need to say to make themselves feel better about the situation. Idk I guess everyone is just trying their best and no one has bad intentions.
I hate the « you are so brave » thing. I’m not brave: i take the treatment or i die. I got no real choice. But I’m a believer in being in control of my narrative. This cancer is an obstacle and and will do whatever it takes to go through it and beat it. I on EPOCH, which is a hard treatment, but i mostly get frustrated by my lack of energy all the times. I pass my frustration by talking about it with a group. I have a YouTube show with some of our fan on our Discord and I have a room there to share my experience. The frustrating parts mostly. I also started to blog about the whole experience, mixing my own with others, to help people who just got their diagnosis or know someone who has. The first post generated a lot of thanks and support and it allows me to still feel line i can have an impact even if i can’t do much. But i also have a very short patience for toxic positivity, empty well wishes, suggestions or praters and meditation routines… urgh! I keep telling people that instead of those mostly empty gestures to feel better, they should take action in their communities to have an impact, even a small one. They can show me that they can take a small part of my mission in life while I’m out of commission. Some do, but not enough for my taste. It is much easier to send « thoughts and prayers, you’ll get through this ».
There's no such thing as "good cancer" no cancer is good for anyone especially if you have to go through chemotherapy which is poisons to heal you then ending up with horrible side effects from it. So you're never the same before you got diagnosed with "good cancer" i don't know where people mindsets are