Decision to discontinue chemo—how to break the news?
August 27, 2023 9:10 AM Subscribe
I'm making an extremely difficult internal decision to discontinue chemo treatments, and am searching for ways to break the news to family/friends with the least possible negative impact.
Two disclaimers and a positive acknowledgment:
-I’m not seeking answers here trying to persuade me to continue chemo. I am asking that the focal matter of the question be focused on; that is, breaking this difficult news.
-This is not a quest to control people. I understand people will be upset, and I cannot control that or how they will react to the news. I am asking for ways to soften the blow, or break the news in a gentle matter, that might have the least impact, while standing firm and not welcoming protests.
-I wanted to show my appreciation to the community for your support thus far throughout my cancer journey in my past Asks. Definitely very helpful and gracious.
I have completed three rounds of chemo. Each has been difficult for Reasons, and after a lot of introspection, I am making the exceedingly hard decision to discontinue chemo. I have previously discussed the risks with my doctor, and have made peace with all the possibilities that come with discontinuing chemo, up to and including death. While I acknowledge those risks might be a bit too far outside most people’s comfort zones, I am okay with them. I’m not going to lie—it took a huge emotional toll and included many sleepless nights and a lot of internal back/forth, struggling with moral and ethical dilemmas, but in the end, I’ve made peace with the risks and possible outcomes.
Where the issue lies is, breaking the news to my family/friends. For very outside/extended circles, I kind of brought this onto myself, which I acknowledge, but dopamine boosts wherein announcing my cancer diagnosis, journey updates (ie, “completed my 2nd round today!”), has more or less made my journey with colon cancer quite Very Public, at least within my circle and extended circles on social media. I’ve received numerous “warrior!” text variants, “try this diet” encouragements, among other check-ins (and as in past Asks, some disappointments). In short, many people know about my journey, and my attempts to fight the cancer thus far.
I know on SM, it’d be easy to “fade out” and just stop updating people, and most people would probably eventually forget, with how inundated we are nowadays with content, so that part isn’t really an issue. The issue is mainly with my family and close/top-tier friends. I know my mom, in particular, would be heartbroken when I tell her, and probably relentlessly encourage me to keep trying, not to give up, say it’s temporary, all those platitudes. I know a few core friends who would probably be deeply disappointed, and it might even change how our friendship looks like moving forward.
As a people pleaser, how do I best deliver this news in a way that will not encourage people to try to change my mind (ie, a firm “this is the news and this is what it is, but thanks for your support”)? I know I cannot control if people get angry or not, but I’m hoping there’s an approach in where I can soften the news somehow. A handful of scripts would be wonderfully helpful. I’m not good with breaking news or sharing stuff because sometimes I ramble (mostly out of anxiety) or overshare, which invites arguments, so want to avoid that. In short, I want to make it clear that this is My Life Journey, and I’m taking This Path, regardless of what arguments are brewing.
Two disclaimers and a positive acknowledgment:
-I’m not seeking answers here trying to persuade me to continue chemo. I am asking that the focal matter of the question be focused on; that is, breaking this difficult news.
-This is not a quest to control people. I understand people will be upset, and I cannot control that or how they will react to the news. I am asking for ways to soften the blow, or break the news in a gentle matter, that might have the least impact, while standing firm and not welcoming protests.
-I wanted to show my appreciation to the community for your support thus far throughout my cancer journey in my past Asks. Definitely very helpful and gracious.
I have completed three rounds of chemo. Each has been difficult for Reasons, and after a lot of introspection, I am making the exceedingly hard decision to discontinue chemo. I have previously discussed the risks with my doctor, and have made peace with all the possibilities that come with discontinuing chemo, up to and including death. While I acknowledge those risks might be a bit too far outside most people’s comfort zones, I am okay with them. I’m not going to lie—it took a huge emotional toll and included many sleepless nights and a lot of internal back/forth, struggling with moral and ethical dilemmas, but in the end, I’ve made peace with the risks and possible outcomes.
Where the issue lies is, breaking the news to my family/friends. For very outside/extended circles, I kind of brought this onto myself, which I acknowledge, but dopamine boosts wherein announcing my cancer diagnosis, journey updates (ie, “completed my 2nd round today!”), has more or less made my journey with colon cancer quite Very Public, at least within my circle and extended circles on social media. I’ve received numerous “warrior!” text variants, “try this diet” encouragements, among other check-ins (and as in past Asks, some disappointments). In short, many people know about my journey, and my attempts to fight the cancer thus far.
I know on SM, it’d be easy to “fade out” and just stop updating people, and most people would probably eventually forget, with how inundated we are nowadays with content, so that part isn’t really an issue. The issue is mainly with my family and close/top-tier friends. I know my mom, in particular, would be heartbroken when I tell her, and probably relentlessly encourage me to keep trying, not to give up, say it’s temporary, all those platitudes. I know a few core friends who would probably be deeply disappointed, and it might even change how our friendship looks like moving forward.
As a people pleaser, how do I best deliver this news in a way that will not encourage people to try to change my mind (ie, a firm “this is the news and this is what it is, but thanks for your support”)? I know I cannot control if people get angry or not, but I’m hoping there’s an approach in where I can soften the news somehow. A handful of scripts would be wonderfully helpful. I’m not good with breaking news or sharing stuff because sometimes I ramble (mostly out of anxiety) or overshare, which invites arguments, so want to avoid that. In short, I want to make it clear that this is My Life Journey, and I’m taking This Path, regardless of what arguments are brewing.
First of all, I want to say I have so much respect for your strength and self-respect through your cancer journey.
I think that you can tell your loved ones asynchronously so that they process their own feelings before you have to interact with them face to face. This also allows you to write a kind of script and deliver it. If you have any friends who you think will understand and support you immediately, you can also recruit them to help break the news.
An email may be too impersonal nowadays for close friends/family, but a text message is too immediate. If you can, record a video message or write an old-fashioned letter. Then give them some time before reaching out.
As for a script it can be very simple, "Along with my doctors, I have decided to stop chemo treatments for the present. I know this may be a tough decision for you to understand, believe me it was even more difficult decision for me to make. But I know it is the best option for my quality of life. Please take some time to come to terms with my decision and we can talk about it in a few days if you have any questions. I love you so much, I am so grateful for your support."
A little personal advice, if it hasn't come up please ask your doctor if you qualify for a referral to palliative care. My MIL's palliative care team was some of the best and most compassionate medical professionals she interacted with, and they even provided counselling on this exact question and many others that she had after discontinuing chemotherapy. I wish she had been referred when she was first diagnosed.
posted by muddgirl at 9:38 AM on August 27, 2023 [18 favorites]
I think that you can tell your loved ones asynchronously so that they process their own feelings before you have to interact with them face to face. This also allows you to write a kind of script and deliver it. If you have any friends who you think will understand and support you immediately, you can also recruit them to help break the news.
An email may be too impersonal nowadays for close friends/family, but a text message is too immediate. If you can, record a video message or write an old-fashioned letter. Then give them some time before reaching out.
As for a script it can be very simple, "Along with my doctors, I have decided to stop chemo treatments for the present. I know this may be a tough decision for you to understand, believe me it was even more difficult decision for me to make. But I know it is the best option for my quality of life. Please take some time to come to terms with my decision and we can talk about it in a few days if you have any questions. I love you so much, I am so grateful for your support."
A little personal advice, if it hasn't come up please ask your doctor if you qualify for a referral to palliative care. My MIL's palliative care team was some of the best and most compassionate medical professionals she interacted with, and they even provided counselling on this exact question and many others that she had after discontinuing chemotherapy. I wish she had been referred when she was first diagnosed.
posted by muddgirl at 9:38 AM on August 27, 2023 [18 favorites]
A friend's mother recently ended her cancer battle with assisted death. As someone in the "second tier" what seemed very helpful to me is understanding that this was a choice she had made after consulting with doctors, and allowed her to have some dignity in her final months. I didn't have the blow by blow of treatments but if my loved one was communicating this I'd want to clearly understand that this wasn't an ask for help or advice. I feel like every cancer patient gets the "one weird trick" emails from friends of friends and it doesn't feel helpful. Finally, give them *something* to do, whether that's a particular trip or restauraunt you want to enjoy together, asking for weekly phone calls, etc. It kinda sucks to help manage other peoples' feelings, but if you can make your wishes clear it will help prevent misguided "problem solving".
Something like (in person for close family, on social media for the looser connections):
"I've made the decision with my doctors to end chemo treatment for my cancer. Based on the response and my side affects we don't anticipate this adding to my remaining quality of life. I'm thankful for the help you gave me and looking forward to your support in the next stages of my illness. I'd like to focus on spending time together and would like to plan a day at the beach before the end of summer. I'm hoping to keep up regular video chats with further flung friends, I feel best in the early afternoons (1-3), so give me a call!"
posted by Narrow Harbor at 9:41 AM on August 27, 2023 [10 favorites]
Something like (in person for close family, on social media for the looser connections):
"I've made the decision with my doctors to end chemo treatment for my cancer. Based on the response and my side affects we don't anticipate this adding to my remaining quality of life. I'm thankful for the help you gave me and looking forward to your support in the next stages of my illness. I'd like to focus on spending time together and would like to plan a day at the beach before the end of summer. I'm hoping to keep up regular video chats with further flung friends, I feel best in the early afternoons (1-3), so give me a call!"
posted by Narrow Harbor at 9:41 AM on August 27, 2023 [10 favorites]
Dubious dude, I am so sorry that you are going through something as difficult as having to make an announcement like this. You are very wise to say that you know you can’t control people’s reactions. I’m not sure there’s a way to soften this blow for your mom, just because of the nature of the news and the fact that she’s your mother. You may just have to give her time to deal with her emotions and set some boundaries about what you will and won’t discuss.
As for telling your friends, we’re all supposed to say that social media is an unadulterated evil, but I will tell you, breaking bad news to people and allowing them to respond asynchronously can be a gift. People sometimes panic when they hear bad news and immediately start in with platitudes and advice in an attempt to fix the situation. It’s perfectly ok if you can’t handle other people’s reactions on top of everything else. There are already some great ideas in this thread for scripts…maybe consider using social media to deliver them? You’ll know what’s right for you.
I wish you all the best in navigating such a difficult situation. You’ll be in my thoughts.
posted by corey flood at 9:45 AM on August 27, 2023 [14 favorites]
As for telling your friends, we’re all supposed to say that social media is an unadulterated evil, but I will tell you, breaking bad news to people and allowing them to respond asynchronously can be a gift. People sometimes panic when they hear bad news and immediately start in with platitudes and advice in an attempt to fix the situation. It’s perfectly ok if you can’t handle other people’s reactions on top of everything else. There are already some great ideas in this thread for scripts…maybe consider using social media to deliver them? You’ll know what’s right for you.
I wish you all the best in navigating such a difficult situation. You’ll be in my thoughts.
posted by corey flood at 9:45 AM on August 27, 2023 [14 favorites]
Since most people with experience with cancer will associate discontinuing chemo with an expectation of death in the near future, it might be helpful if you could explain your own expectations in that regard. From what you've posted, I'm not sure whether that's the case or whether you simply find the treatment too much to bear and your doctors consider it a risky move but not one that calls for immediate transition to palliative care. Obviously, there is a big difference there, and, while your family/friends may not have treated you well, I think it's better to clarify whether or not you mean "I'm going to die soon."
posted by praemunire at 9:59 AM on August 27, 2023 [31 favorites]
posted by praemunire at 9:59 AM on August 27, 2023 [31 favorites]
I'm not sure if I was clear, it is a misconception that palliative care is only for people who are at an imminent risk of death. It may vary by state but it is my understanding that people with stage 4 cancer (and other serious or chronic diseases) may qualify for palliative care no matter their immediate prognosis or treatment plan.
posted by muddgirl at 10:09 AM on August 27, 2023 [12 favorites]
posted by muddgirl at 10:09 AM on August 27, 2023 [12 favorites]
I might try and separate people into two basic groups:
1. People who have either not been terribly supportive of you or people (like your mom) who will only ever be satisfied if you do what they think you ought to do.
2. People who have been supportive of you and who generally don't impose their will on you.
For the first group, I'd have a firm line, similar to some scripts you've already gotten. For the second group, I'd at least consider offering them something along the lines of "This is what I've decided. I realize it might be hard to understand, and while I don't want to debate my choice, if you do have questions I'll be happy to answer any in the next [set time - a week? a month?]." Not only because it is often psychologically beneficial to talk about hard things with friends we trust, but it will likely also help strengthen those friendships. Again, I would only consider doing this with people who have been consistently kind and supportive of you.
Best of luck navigating this.
posted by coffeecat at 10:10 AM on August 27, 2023 [2 favorites]
1. People who have either not been terribly supportive of you or people (like your mom) who will only ever be satisfied if you do what they think you ought to do.
2. People who have been supportive of you and who generally don't impose their will on you.
For the first group, I'd have a firm line, similar to some scripts you've already gotten. For the second group, I'd at least consider offering them something along the lines of "This is what I've decided. I realize it might be hard to understand, and while I don't want to debate my choice, if you do have questions I'll be happy to answer any in the next [set time - a week? a month?]." Not only because it is often psychologically beneficial to talk about hard things with friends we trust, but it will likely also help strengthen those friendships. Again, I would only consider doing this with people who have been consistently kind and supportive of you.
Best of luck navigating this.
posted by coffeecat at 10:10 AM on August 27, 2023 [2 favorites]
a. you're in the right here. It's your decision to make and yours alone.
b. in terms of how to actually put this decision into words, I think these (your own) could well be part of it:
I have completed three rounds of chemo. Each has been difficult for Reasons, and after a lot of introspection, I am making the exceedingly hard decision to discontinue chemo. I have previously discussed the risks with my doctor, and have made peace with all the possibilities that come with discontinuing chemo, up to and including death. While I acknowledge those risks might be a bit too far outside most people’s comfort zones, I am okay with them. I’m not going to lie—it took a huge emotional toll and included many sleepless nights and a lot of internal back/forth, struggling with moral and ethical dilemmas, but in the end, I’ve made peace with the risks and possible outcomes.
I have a very good friend who's currently into round three of his chemo and I can see all too well the toll it's taking on him. If he suddenly made the decision you're making, it would be troubling to hear it but I'd fully understand the why ...
posted by philip-random at 10:11 AM on August 27, 2023 [5 favorites]
b. in terms of how to actually put this decision into words, I think these (your own) could well be part of it:
I have completed three rounds of chemo. Each has been difficult for Reasons, and after a lot of introspection, I am making the exceedingly hard decision to discontinue chemo. I have previously discussed the risks with my doctor, and have made peace with all the possibilities that come with discontinuing chemo, up to and including death. While I acknowledge those risks might be a bit too far outside most people’s comfort zones, I am okay with them. I’m not going to lie—it took a huge emotional toll and included many sleepless nights and a lot of internal back/forth, struggling with moral and ethical dilemmas, but in the end, I’ve made peace with the risks and possible outcomes.
I have a very good friend who's currently into round three of his chemo and I can see all too well the toll it's taking on him. If he suddenly made the decision you're making, it would be troubling to hear it but I'd fully understand the why ...
posted by philip-random at 10:11 AM on August 27, 2023 [5 favorites]
I’m really sorry you’re going through this, dubious_dude. And you know what you need more than anyone, on social media or otherwise.
As far as a script, honestly, I don’t think you have to announce it, and barely have to discuss it. People are uncomfortable talking about sickness, and incredibly uncomfortable talking about cancer and avoid the subject as much as possible - I think the biggest reason people love giving advice and opinions about treatments when the subject does come up is that they think it’s a way to be “helpful”, and being helpful is a way to feel less bad about sitting in the reality that sometimes people get diseases and are in pain or have uncertain diagnoses (I’m not saying either is the case in your situation).
But the flip side is, when sick people - even close friends and family - don’t talk about their treatment, people lean into that avoidance and assume that means that things are going well unless they see evidence to the contrary. Just discontinue the chemo and go about treating the disease through the other routes available in line with your doctor’s recommendations. When you post about your status or people ask how you’re doing, tell them what you know about the reduction or status of your cancer itself. Tell them what the next treatment is if you’re looking for prayers / good vibes. If someone actually asks you straight out about chemo, then you can say that you stopped the chemo after a few talking with your doctor and now you’re doing X. I think most people know by now that no two cancers are alike, and therefore no two treatments are alike. So treat it like you had chemo for a few treatments, that did its thing, and now this is what your doctor is having you do next. It wasn’t a Decision. It was just a next step in your ongoing fight.
Best of luck and strength as you meet the challenges ahead.
posted by Mchelly at 10:20 AM on August 27, 2023 [15 favorites]
As far as a script, honestly, I don’t think you have to announce it, and barely have to discuss it. People are uncomfortable talking about sickness, and incredibly uncomfortable talking about cancer and avoid the subject as much as possible - I think the biggest reason people love giving advice and opinions about treatments when the subject does come up is that they think it’s a way to be “helpful”, and being helpful is a way to feel less bad about sitting in the reality that sometimes people get diseases and are in pain or have uncertain diagnoses (I’m not saying either is the case in your situation).
But the flip side is, when sick people - even close friends and family - don’t talk about their treatment, people lean into that avoidance and assume that means that things are going well unless they see evidence to the contrary. Just discontinue the chemo and go about treating the disease through the other routes available in line with your doctor’s recommendations. When you post about your status or people ask how you’re doing, tell them what you know about the reduction or status of your cancer itself. Tell them what the next treatment is if you’re looking for prayers / good vibes. If someone actually asks you straight out about chemo, then you can say that you stopped the chemo after a few talking with your doctor and now you’re doing X. I think most people know by now that no two cancers are alike, and therefore no two treatments are alike. So treat it like you had chemo for a few treatments, that did its thing, and now this is what your doctor is having you do next. It wasn’t a Decision. It was just a next step in your ongoing fight.
Best of luck and strength as you meet the challenges ahead.
posted by Mchelly at 10:20 AM on August 27, 2023 [15 favorites]
I have no words. My chemo literally almost killed me, so I get where you’re coming from.
You might consider adding info about monitoring or additional treatment modalities, if either of those are relevant - just to head off the “have you tried this” people.
I really like the idea of a letter, but be sure to express your love, both for the recipient, and for yourself.
I wish you peace.
posted by dbmcd at 10:25 AM on August 27, 2023 [1 favorite]
You might consider adding info about monitoring or additional treatment modalities, if either of those are relevant - just to head off the “have you tried this” people.
I really like the idea of a letter, but be sure to express your love, both for the recipient, and for yourself.
I wish you peace.
posted by dbmcd at 10:25 AM on August 27, 2023 [1 favorite]
I think a lot of this depends on what you have energy to put into.
I know you said you can fade out but also consider that for social media and outer-circle friends, you can keep your tone consistent and say hey, as the next step in my journey I'm finished with chemotherapy and on to...(whatever it is, relaxing and enjoying the fall, etc.) To be brutal about it, I'm not sure other people will be aware that you had the option to continue, and even if they do, if they ask then that's sort of rude.
For your close friends, I think you deserve a lot of support during this time. So I'd frame it like that. Hey friend, I love you and the support you give me/the way you make me laugh/the way we enjoy bowling together. So I wanted to let you know that I've finished chemotherapy and hoping that you can sign up for a meal train/come hang out/stay in touch/whatever. Again, you don't owe them an explanation of what you could have done. If they ask them I think a script would be "I've had a lot of difficult discussions with my medical team and done a lot of thinking, and I'm confident this is right for me. My decision is final. I am really looking forward to (thing you are)."
Just - try to indicate that this is a Done Deal and not open for discussion. That won't spare you some feelings and discussion but I think that's the best you can do. And when you're done with the feelings/discussion just say "hey, I love that you care so much and I care about you the same way. I need to stop talking about this now, and I hope and expect you'll support my decision because I'm the expert on me and my health."
For your mother...Dude, I think this one is probably the hardest but I can't see any way to shut down the conversation without just being really, really present and heart felt. I hope you can say something like "Mom, I love you a lot, and I know you love me. You raised me to be thoughtful and make good decisions, and together we've dealt with a lot of things when I was younger and now I'm an adult making those decisions. I've made the decision not to continue with chemotherapy. I've thought about it a lot and discussed it thoroughly with my medical team and my decision's final. I'm really looking forward to (something) and to sharing this journey with you."
Then when she freaks out, because I have to tell you as a mother who has made the decision to take a child off life support, she almost certainly will, it is entirely your choice if you want to just keep repeating, "I know, I love you, but I need to do this for myself my way," or if you need to hang up.
She may surprise you. But I bet she'll freak out, at least temporarily. And what I want you to know is that it is your decision. You have EVERY right to make it. What I want for my kids is for them to be adults, and being adult means you have the right to manage your own treatment and decide what is and what is not working for you.
If she goes off the rails, she will be railing against the universe through you, possibly. And that's unfair; I wish she were more grounded. But it is okay for her to upset and it is okay for you to say "mom, I love you but I can't talk about this with you right now. Let's talk in a few days." And then BLOCK her number and don't read her email. Give her some time. She may be your fiercest advocate later but I bet the lack of control will freak her out now.
Also, you deserve support in this, so don't be shy about talking to the hospital/clinic social worker for supports too.
posted by warriorqueen at 10:44 AM on August 27, 2023 [27 favorites]
I know you said you can fade out but also consider that for social media and outer-circle friends, you can keep your tone consistent and say hey, as the next step in my journey I'm finished with chemotherapy and on to...(whatever it is, relaxing and enjoying the fall, etc.) To be brutal about it, I'm not sure other people will be aware that you had the option to continue, and even if they do, if they ask then that's sort of rude.
For your close friends, I think you deserve a lot of support during this time. So I'd frame it like that. Hey friend, I love you and the support you give me/the way you make me laugh/the way we enjoy bowling together. So I wanted to let you know that I've finished chemotherapy and hoping that you can sign up for a meal train/come hang out/stay in touch/whatever. Again, you don't owe them an explanation of what you could have done. If they ask them I think a script would be "I've had a lot of difficult discussions with my medical team and done a lot of thinking, and I'm confident this is right for me. My decision is final. I am really looking forward to (thing you are)."
Just - try to indicate that this is a Done Deal and not open for discussion. That won't spare you some feelings and discussion but I think that's the best you can do. And when you're done with the feelings/discussion just say "hey, I love that you care so much and I care about you the same way. I need to stop talking about this now, and I hope and expect you'll support my decision because I'm the expert on me and my health."
For your mother...Dude, I think this one is probably the hardest but I can't see any way to shut down the conversation without just being really, really present and heart felt. I hope you can say something like "Mom, I love you a lot, and I know you love me. You raised me to be thoughtful and make good decisions, and together we've dealt with a lot of things when I was younger and now I'm an adult making those decisions. I've made the decision not to continue with chemotherapy. I've thought about it a lot and discussed it thoroughly with my medical team and my decision's final. I'm really looking forward to (something) and to sharing this journey with you."
Then when she freaks out, because I have to tell you as a mother who has made the decision to take a child off life support, she almost certainly will, it is entirely your choice if you want to just keep repeating, "I know, I love you, but I need to do this for myself my way," or if you need to hang up.
She may surprise you. But I bet she'll freak out, at least temporarily. And what I want you to know is that it is your decision. You have EVERY right to make it. What I want for my kids is for them to be adults, and being adult means you have the right to manage your own treatment and decide what is and what is not working for you.
If she goes off the rails, she will be railing against the universe through you, possibly. And that's unfair; I wish she were more grounded. But it is okay for her to upset and it is okay for you to say "mom, I love you but I can't talk about this with you right now. Let's talk in a few days." And then BLOCK her number and don't read her email. Give her some time. She may be your fiercest advocate later but I bet the lack of control will freak her out now.
Also, you deserve support in this, so don't be shy about talking to the hospital/clinic social worker for supports too.
posted by warriorqueen at 10:44 AM on August 27, 2023 [27 favorites]
When our doctor said my husband wasn’t a good candidate for chemo any more we actually didn’t tell his side of the family about it, and for the most part we didn’t tell most people anything official. That way we avoided the impulse people have to offer their two cents. Our kid and their family were on board with whatever went down. We figured nobody was owed an announcement of anything. We just concentrated on getting on with life and making sure he could hang out with his friends.
posted by Peach at 10:46 AM on August 27, 2023 [51 favorites]
posted by Peach at 10:46 AM on August 27, 2023 [51 favorites]
When you tell people, I think you need to be armed with and lead with your most likely outcomes - nobody knows what YOU specifically mean by discontinuing chemo, and you need to tell them in small words.
They want to know if you are definitely going to die, soon, as a result of this cancer, to cut to the chase.
They need to understand clearly whether you are saying "I am ceasing all treatment and I have a definitively short time left" or "while it would be most optimal to continue chemo more rounds to be more thorough, people do stop this chemo when it is too much and carry on with other treatment".
I think most people are aware that cancer treatment now encompasses a lot more than just surgery, radiation, and/or chemo - there are biologics, there are growth-disruptors, and of course there's simply very good ongoing monitoring and testing. Discontinuing chemo is not the same as "giving up", but the way you've framed this certainly reads as if you are done, definitively, or at least that in your mind discontinuing chemo IS giving up. Which it may not be, depending on the details.
The format for delivering scary or difficult new is often: [signal that a serious topic is coming] [basic information] [explanation of what this means to them] [any supporting information] [next steps]
So, depending on exactly what information you need to deliver, it would go something like, "Friendo, I need to talk to you a minute about my treatment status." Pause to give friend a moment to prepare and focus. "I wanted to let you know that I'm discontinuing my current chemo program because the treatments are too hard on my body*." Beat to absorb. "This affects my prognosis to be more like XYZ than ABC if everything had gone perfectly." This is where you need to be very frank about where you fall on the "likely to die" spectrum. I don't know if this chemo is a "just in case" to prevent any forming/undetectable metastases/recurrence or if it's meant to treat tumors that are known to be there. You should probably make sure to clearly communicate that explanation to anyone who might not already understand. "My doctor and I are going to be doing these other things going forward. I'm going back to work full-time and resuming my normal activities (or whatever the plan is)."
*This isn't something people can debate much. Also people generally know that chemo is a fine line between killing the disease and killing the person and there is such a thing as chemo being intolerable. What you need to keep to yourself is the details of what is too hard about chemo, at least for most people you need to talk to about this - if they don't have details, they can't try to debate them. Let this leave an impression that the chemo was harming you too much to make sense to continue, even if you might feel that's not a 100% pinpoint-accurate description of your experience. You are in a state of "tell people what is optimal for them to know" and not "provide a perfectly accurate detailed medical case review under oath".
I think you can conclude this talk with some people in your life with a more honest assessment of your headspace and what you need: "This is obviously a little scary and uncertain for me, but here's how I feel in summary and what I'd like you to do in the near future."
I'm sorry your treatment hasn't worked out as well as you'd hoped.
posted by Lyn Never at 11:04 AM on August 27, 2023 [12 favorites]
They want to know if you are definitely going to die, soon, as a result of this cancer, to cut to the chase.
They need to understand clearly whether you are saying "I am ceasing all treatment and I have a definitively short time left" or "while it would be most optimal to continue chemo more rounds to be more thorough, people do stop this chemo when it is too much and carry on with other treatment".
I think most people are aware that cancer treatment now encompasses a lot more than just surgery, radiation, and/or chemo - there are biologics, there are growth-disruptors, and of course there's simply very good ongoing monitoring and testing. Discontinuing chemo is not the same as "giving up", but the way you've framed this certainly reads as if you are done, definitively, or at least that in your mind discontinuing chemo IS giving up. Which it may not be, depending on the details.
The format for delivering scary or difficult new is often: [signal that a serious topic is coming] [basic information] [explanation of what this means to them] [any supporting information] [next steps]
So, depending on exactly what information you need to deliver, it would go something like, "Friendo, I need to talk to you a minute about my treatment status." Pause to give friend a moment to prepare and focus. "I wanted to let you know that I'm discontinuing my current chemo program because the treatments are too hard on my body*." Beat to absorb. "This affects my prognosis to be more like XYZ than ABC if everything had gone perfectly." This is where you need to be very frank about where you fall on the "likely to die" spectrum. I don't know if this chemo is a "just in case" to prevent any forming/undetectable metastases/recurrence or if it's meant to treat tumors that are known to be there. You should probably make sure to clearly communicate that explanation to anyone who might not already understand. "My doctor and I are going to be doing these other things going forward. I'm going back to work full-time and resuming my normal activities (or whatever the plan is)."
*This isn't something people can debate much. Also people generally know that chemo is a fine line between killing the disease and killing the person and there is such a thing as chemo being intolerable. What you need to keep to yourself is the details of what is too hard about chemo, at least for most people you need to talk to about this - if they don't have details, they can't try to debate them. Let this leave an impression that the chemo was harming you too much to make sense to continue, even if you might feel that's not a 100% pinpoint-accurate description of your experience. You are in a state of "tell people what is optimal for them to know" and not "provide a perfectly accurate detailed medical case review under oath".
I think you can conclude this talk with some people in your life with a more honest assessment of your headspace and what you need: "This is obviously a little scary and uncertain for me, but here's how I feel in summary and what I'd like you to do in the near future."
I'm sorry your treatment hasn't worked out as well as you'd hoped.
posted by Lyn Never at 11:04 AM on August 27, 2023 [12 favorites]
Response by poster: Basically, I am not at immediate risk of dying right away (current diagnosis is Stage 3c), but there was a ~50% chance that if I bypassed chemo, the cancer would have came back in an incurable, Stage 4 form, and could very much reduce my life longevity (doc says ~5 years or less if the cancer resurrects itself). If I continue chemo as prescribed, there'd be a better chance that the cancer will be fully extinguished. Not 100%, but better than zero for sure. Again, I have made peace with the possible outcomes.
The chemo is proactive, mostly "in case" (highly urged by my oncologist). The surgery got rid of the tumor completely, except for one lymph node. I'm hoping and optimistic (without any medical/scientific input from my doctor) that the three rounds I did complete was enough to at least hold it at bay.
https://scopeblog.stanford.edu/2021/06/11/why-many-stage-3-colorectal-cancer-patients-skip-chemo/
This was definitely reassuring for me to read, and know that I am not alone. I must confess, if I had my own family (partner and/or kids), and a better, more localized support system, my decision to continue/not continue chemo might be different. While chemo itself has not been near-deadly to me, like dbmcd (so sorry you had to go through that), it has had its share of hardships and impacts on the quality of life. It's not at all easy living alone in a major city and undergoing chemo. Again, the decision I made is something I am okay with internally—I keep telling myself that not everyone is intended to live until they're 70-100, and that's okay. The Universe has a plan for me, and all I can do is the best I can. A bit morbid, perhaps, but that's my reality.
posted by dubious_dude at 11:20 AM on August 27, 2023 [51 favorites]
The chemo is proactive, mostly "in case" (highly urged by my oncologist). The surgery got rid of the tumor completely, except for one lymph node. I'm hoping and optimistic (without any medical/scientific input from my doctor) that the three rounds I did complete was enough to at least hold it at bay.
https://scopeblog.stanford.edu/2021/06/11/why-many-stage-3-colorectal-cancer-patients-skip-chemo/
This was definitely reassuring for me to read, and know that I am not alone. I must confess, if I had my own family (partner and/or kids), and a better, more localized support system, my decision to continue/not continue chemo might be different. While chemo itself has not been near-deadly to me, like dbmcd (so sorry you had to go through that), it has had its share of hardships and impacts on the quality of life. It's not at all easy living alone in a major city and undergoing chemo. Again, the decision I made is something I am okay with internally—I keep telling myself that not everyone is intended to live until they're 70-100, and that's okay. The Universe has a plan for me, and all I can do is the best I can. A bit morbid, perhaps, but that's my reality.
posted by dubious_dude at 11:20 AM on August 27, 2023 [51 favorites]
I'm sure it was a hard choice and one you've made with a lot of info and self-awareness.
I honestly don't think you have to tell most people. In my experience, people will ask how chemo is as a general way of showing care. If they ask how chemo is, I don't see anything wrong with saying you and your dr are finding the best treatment and leaving it at that. Or that you and your dr discussed options and at this point you are stable and chemo is hard on your body. All that is true.
You're right that people will expect the worst and try to talk you out of it and send you what they think are inspirational stories.
With the closest people, I'd say that's a judgment call. Is your mom likely to react in ways that exacerbate your own stress? I can't imagine any mom taking that news well. Spare yourself other people's theatrics and well-meaning crap at every opportunity. You already have a good explanation that's honest. You get to decide when/if you offer it.
Best of luck!
posted by mermaidcafe at 11:35 AM on August 27, 2023 [6 favorites]
I honestly don't think you have to tell most people. In my experience, people will ask how chemo is as a general way of showing care. If they ask how chemo is, I don't see anything wrong with saying you and your dr are finding the best treatment and leaving it at that. Or that you and your dr discussed options and at this point you are stable and chemo is hard on your body. All that is true.
You're right that people will expect the worst and try to talk you out of it and send you what they think are inspirational stories.
With the closest people, I'd say that's a judgment call. Is your mom likely to react in ways that exacerbate your own stress? I can't imagine any mom taking that news well. Spare yourself other people's theatrics and well-meaning crap at every opportunity. You already have a good explanation that's honest. You get to decide when/if you offer it.
Best of luck!
posted by mermaidcafe at 11:35 AM on August 27, 2023 [6 favorites]
I wouldn't tell my mother or my friends that you are stopping chemo because they will 100% interpret that as "choosing to die" and then you will have to deal with 9,000 conversations about why you are choosing to die.
I would instead tell people that with the endorsement of your doctor, you've made the decision to suspend chemo for now and see how your recovery progresses. But it's up to you how much drama you want to attract. I personally hate that "warrior!" stuff -- someone called me inspirational last week and I swear to God I would have blocked her except she got me a Taylor Swift ticket so she gets a hall pass.
posted by DarlingBri at 12:33 PM on August 27, 2023 [43 favorites]
I would instead tell people that with the endorsement of your doctor, you've made the decision to suspend chemo for now and see how your recovery progresses. But it's up to you how much drama you want to attract. I personally hate that "warrior!" stuff -- someone called me inspirational last week and I swear to God I would have blocked her except she got me a Taylor Swift ticket so she gets a hall pass.
posted by DarlingBri at 12:33 PM on August 27, 2023 [43 favorites]
I also think you could say, "I've finished chemo." As far as they know, three rounds was the prescribed amount, and you did all three.
Wishing you all the best.
posted by airplant at 12:33 PM on August 27, 2023 [49 favorites]
Wishing you all the best.
posted by airplant at 12:33 PM on August 27, 2023 [49 favorites]
Thank you for sharing more context, I may have jumped to some conclusions based on my own life experiences but all cancers are different and you are on a different journey (though I still think everyone should askt jri
I wonder if
posted by muddgirl at 12:38 PM on August 27, 2023
I wonder if
posted by muddgirl at 12:38 PM on August 27, 2023
Sorry posted too soon. I wonder if you are feeling some anxiety about this decision because you are worried about how your doctors will react? You don't want to let your doctors down? By sharing this decision with people who will be unconditionally supportive (for example, the fine folks here at AskMe) we can pump you up and validate you.
Then, sharing with people like your mom is going to be less of a big deal. In some ways this is good news, you are currently disease-free, right? Stopping chemo is the next step on your journey, it's a happy event. They don't need to worry about statistical future risk the way that you and your doctor do.
posted by muddgirl at 12:43 PM on August 27, 2023 [1 favorite]
Then, sharing with people like your mom is going to be less of a big deal. In some ways this is good news, you are currently disease-free, right? Stopping chemo is the next step on your journey, it's a happy event. They don't need to worry about statistical future risk the way that you and your doctor do.
posted by muddgirl at 12:43 PM on August 27, 2023 [1 favorite]
A person in my life who made this decision did not "break the news" so much as she started dialing way back on sharing updates and when asked directly (e.g., "how is chemo going?") her response was fairly low key -- chemo wasn't happening at the moment, thanks for asking, no I don't really want to discuss it, but appreciate your support. It might help to think of this as one conversation at a time rather than a series of big announcements. You cannot control how people react but you can control how much you are willing to engage in discussions on your decisions.
posted by sm1tten at 12:56 PM on August 27, 2023 [11 favorites]
posted by sm1tten at 12:56 PM on August 27, 2023 [11 favorites]
Your Mom may feel, as many people would, that she, and you, and everyone, should be _doing_ something to help you. What will probably help a lot is this: tell her what she _can_ do, and what you want her to do, and make it clear how that will actually help your life be better -- and that decreasing stress on you, for example, can have measurable, proven benefits.
If she doesn't feel helpless, she may be slightly less upset. Or a lot less upset. I don't know -- but I know this would make things easier on me if I received the news from someone.
(Which I kind of have, just now. I'm always glad to see a post from you, learning about how you are thinking so clearly in the face of so much insanity in your life. It's not fair at all, and I wish I could help more. But you have remained sane and kind -- and it's OK if you sometimes / later don't stay as sane and kind! -- and that's impressive.)
posted by amtho at 1:55 PM on August 27, 2023 [5 favorites]
If she doesn't feel helpless, she may be slightly less upset. Or a lot less upset. I don't know -- but I know this would make things easier on me if I received the news from someone.
(Which I kind of have, just now. I'm always glad to see a post from you, learning about how you are thinking so clearly in the face of so much insanity in your life. It's not fair at all, and I wish I could help more. But you have remained sane and kind -- and it's OK if you sometimes / later don't stay as sane and kind! -- and that's impressive.)
posted by amtho at 1:55 PM on August 27, 2023 [5 favorites]
Along the lines of what Peach said above, my suggestion is to say nothing unless you are asked *and* feel up to answering. If you are having a meetup with a friend and they say "How are your treatments going?" You can decide then and there how to answer. My expectation is that most humans have challenges asking such questions of those with cancer (or Parkinsons, ALS, etc.). They want to spend time with their friend/relative, and while they are curious most won't ask. Mostly because they are afraid of how to deal with a negative response.
I have a friend dealing with your same challenge and they will text me (lives on another continent) about football/soccer, etc, and they pass on when scans come back negative without my asking. But I never say "Hey, any cancer updates?" because it feels like a real bummer to ask my friend to think about something they may not want to focus on; and it feels like it is something more for my curiosity -- because my knowing won't change how I interact with them.
Instead, I ask "How was the weekend? Did you host an event this weekend? How was the anniversary party? Did you catch that [our favorite band] released a live concert?" Because he is my friend and cancer doesn't define him. And I want to focus on the things I love about them and not how much I hate cancer.
You are a strong and brave person, dubious_dude, and I hope you beat this fucking disease on your own terms. Like others here I will continue to cheer you on and keep you in my thoughts.
posted by terrapin at 1:57 PM on August 27, 2023 [6 favorites]
I have a friend dealing with your same challenge and they will text me (lives on another continent) about football/soccer, etc, and they pass on when scans come back negative without my asking. But I never say "Hey, any cancer updates?" because it feels like a real bummer to ask my friend to think about something they may not want to focus on; and it feels like it is something more for my curiosity -- because my knowing won't change how I interact with them.
Instead, I ask "How was the weekend? Did you host an event this weekend? How was the anniversary party? Did you catch that [our favorite band] released a live concert?" Because he is my friend and cancer doesn't define him. And I want to focus on the things I love about them and not how much I hate cancer.
You are a strong and brave person, dubious_dude, and I hope you beat this fucking disease on your own terms. Like others here I will continue to cheer you on and keep you in my thoughts.
posted by terrapin at 1:57 PM on August 27, 2023 [6 favorites]
If I were in your position, and there were people I knew would give me shit for telling them the truth, I would have no qualms whatsoever about telling them whatever comforting lie they needed to hear in order to back the fuck off and leave me alone. People who can't be trusted to deal with the truth in a respectful fashion don't deserve to be given it.
That goes double, triple, quadruple for any of the fuckers involved in the lake hazing incident.
Sorry it's come down to this. Fuck cancer. Best wishes from the other side of the planet.
posted by flabdablet at 2:02 PM on August 27, 2023 [11 favorites]
That goes double, triple, quadruple for any of the fuckers involved in the lake hazing incident.
Sorry it's come down to this. Fuck cancer. Best wishes from the other side of the planet.
posted by flabdablet at 2:02 PM on August 27, 2023 [11 favorites]
I'll go against the grain here, which seems to be: many people here are suggesting you not disclose very much information about your actual situation and not tell people in very much depth about your choice because they might react in a difficult way for you. This might be a good idea if your main goal is to avoid conflict and stress, and certainly is a good idea for people you aren't that close to. I personally would want people I love -- even people I have conflictual relationships with -- to know what's actually, really, truthfully going on with me. I would not want to filter it too much, I would want to share it. If your mother is someone whom you value and whom you want to have a close relationship to at a rough time in your life, then your main goal should be telling her what's going on with you and not worrying so much about softening the blow to her. At the same time, do practice setting a boundary to temporarily stop the conversation when and if her reactions get too much for you, but basically you are free to reveal your actual true self to your mother or anyone else if that's a value to you. Keeping things to yourself because other people don't need to know things might work for some people but it would make me feel lonely and isolated at a time that I would need connection, even if that connection was filled with difficult emotion befitting a difficult circumstance. Of course only you know what you need right now. Me, I'd need honesty and connection above all, you might need peace, solitude and less interference from others. In any case I'd decide which of those is most important to you right now. I wish you very much the best in your journey.
posted by rainy day girl at 2:34 PM on August 27, 2023 [4 favorites]
posted by rainy day girl at 2:34 PM on August 27, 2023 [4 favorites]
mm. I'm going to say just drop a truth bomb, say it fast and simple. "It's my life, this is my choice, and I need you to not second guess me or try to change my mind. Do I have your complete and full support in this and your help in getting on with my life as I choose to live it, or am I going to have to cut contact with you?"
Just like, you need to know where the hell people stand, and if they're on side or not.
posted by seanmpuckett at 3:04 PM on August 27, 2023 [1 favorite]
Just like, you need to know where the hell people stand, and if they're on side or not.
posted by seanmpuckett at 3:04 PM on August 27, 2023 [1 favorite]
"I must confess, if I had a better, more localized support system, my decision
might be different. It's not at all easy living alone in a major city and undergoing chemo."
I wonder if you could let people know this. Maybe you could get more local support if people knew that it could very well make the difference in you getting the treatment that your doctors recommend.
posted by halehale at 4:20 PM on August 27, 2023 [12 favorites]
might be different. It's not at all easy living alone in a major city and undergoing chemo."
I wonder if you could let people know this. Maybe you could get more local support if people knew that it could very well make the difference in you getting the treatment that your doctors recommend.
posted by halehale at 4:20 PM on August 27, 2023 [12 favorites]
I think that this is in all in the way you pitch it. If you really have decided that this is the right course of action for you, then I think for most people you say that you have finished chemo, that your treatment has been as successful as it's going to be but that there's always a chance the cancer might come back and you'll need ongoing monitoring (or whatever). That sounds both true, and unlikely to cause people to respond in challenging ways.
If you have someone that you want real genuine support from, then I think sharing what you have shared in your second update with us is the way to go. I think it is almost inevitable that they will make at least one effort to change your mind. It will probably be easier to let them try once, genuinely listen to what they say, and then if (as you expect) your views are unchanged you can thank them and say that.
posted by plonkee at 4:46 PM on August 27, 2023 [2 favorites]
If you have someone that you want real genuine support from, then I think sharing what you have shared in your second update with us is the way to go. I think it is almost inevitable that they will make at least one effort to change your mind. It will probably be easier to let them try once, genuinely listen to what they say, and then if (as you expect) your views are unchanged you can thank them and say that.
posted by plonkee at 4:46 PM on August 27, 2023 [2 favorites]
These quotes from the article you link, plus your own statement that you would continue if you had support...seems like the issue is that you aren't getting the support you need to continue the chemotherapy.
"If you have people offering to help with chores, giving you rides, encouraging you to get to your appointments, you're much more likely to undergo treatment,"
"They found that among patients who reported little social support, 60% of those who listed no risk factors completed chemotherapy, while 40% of those with six or more risk factors did. Among patients who reported having a high level of social support, 90% of those with no risk factors completed the treatments, while 75% of those with six or more risk factors did.'
posted by halehale at 4:48 PM on August 27, 2023 [7 favorites]
"If you have people offering to help with chores, giving you rides, encouraging you to get to your appointments, you're much more likely to undergo treatment,"
"They found that among patients who reported little social support, 60% of those who listed no risk factors completed chemotherapy, while 40% of those with six or more risk factors did. Among patients who reported having a high level of social support, 90% of those with no risk factors completed the treatments, while 75% of those with six or more risk factors did.'
posted by halehale at 4:48 PM on August 27, 2023 [7 favorites]
How about if you say:
Chemotherapy is really hard and I need a lot more help in order to continue.
I need a strong local social support network.
I need people offering to help with chores, giving me rides, and encouraging me to get to my appointments. I need people to cook and clean for me. Three times a day, every day, I need people to stop by and take care of me by providing emotional and logistical support.
Would you help me. Could someone setup a caring bridge and everyone sign up.
I can't continue on alone.
posted by halehale at 5:17 PM on August 27, 2023 [1 favorite]
Chemotherapy is really hard and I need a lot more help in order to continue.
I need a strong local social support network.
I need people offering to help with chores, giving me rides, and encouraging me to get to my appointments. I need people to cook and clean for me. Three times a day, every day, I need people to stop by and take care of me by providing emotional and logistical support.
Would you help me. Could someone setup a caring bridge and everyone sign up.
I can't continue on alone.
posted by halehale at 5:17 PM on August 27, 2023 [1 favorite]
Response by poster: I think that this is in all in the way you pitch it. If you really have decided that this is the right course of action for you, then I think for most people you say that you have finished chemo, that your treatment has been as successful as it's going to be but that there's always a chance the cancer might come back and you'll need ongoing monitoring (or whatever). That sounds both true, and unlikely to cause people to respond in challenging ways.
I'll stick with that basic script, thank you so much!
posted by dubious_dude at 5:24 PM on August 27, 2023 [11 favorites]
I'll stick with that basic script, thank you so much!
posted by dubious_dude at 5:24 PM on August 27, 2023 [11 favorites]
Tel 3 - 5 different people and give them permission/ encouragement to spread the news. It can be really draining to give difficult news over and over and over. Decide what your boundaries are. Sometimes people are distraught and need support, but you don't need to be the one giving it. You could, say, decide that you'll do one I know this is hard for you to hear and then It takes a lot of my energy to explain this repeatedly, can we move on to %subject
I'm sorry you are in this position, and I hope you continue to be well.
posted by theora55 at 5:54 PM on August 27, 2023
I'm sorry you are in this position, and I hope you continue to be well.
posted by theora55 at 5:54 PM on August 27, 2023
From what I recall of dubious_dude's previous posts over the years, it doesn't sound like he has much or any support system from friends/relatives. I'm not sure if asking/begging for help would do any good with those people, honestly. And getting people who want to help and support you is hard. Especially when that wasn't going well before having cancer.
But I'm not going to go into that again, other than I'm really sad to hear things are going like this for you and you don't deserve this shit, but you gotta do what's right for you and your quality of life, such as it is. I agree with those who either said "don't mention it at all, really" or do it in some kind of asynchronous group announcement way where people can't immediately sputter, "But, but, but.." in your face in live-action. Your further explanation of "it's not exactly an immediate death sentence here if I stop" may be good to deploy as well.
I have no suggestions re: your mother. That has to be live action and that inevitably is going to be distressing. That's something you'll just have to deal with :(
posted by jenfullmoon at 6:02 PM on August 27, 2023 [6 favorites]
But I'm not going to go into that again, other than I'm really sad to hear things are going like this for you and you don't deserve this shit, but you gotta do what's right for you and your quality of life, such as it is. I agree with those who either said "don't mention it at all, really" or do it in some kind of asynchronous group announcement way where people can't immediately sputter, "But, but, but.." in your face in live-action. Your further explanation of "it's not exactly an immediate death sentence here if I stop" may be good to deploy as well.
I have no suggestions re: your mother. That has to be live action and that inevitably is going to be distressing. That's something you'll just have to deal with :(
posted by jenfullmoon at 6:02 PM on August 27, 2023 [6 favorites]
The update you gave about the reasons you feel comfortable making this decision would be a great follow up for people who want to know more information. You could just copy and paste what you wrote here because it is very good!
posted by Bottlecap at 8:26 PM on August 27, 2023 [3 favorites]
posted by Bottlecap at 8:26 PM on August 27, 2023 [3 favorites]
I really feel this, dubious dude--I've been at that point lately in my chemotherapy, which is very different from the type you're enduring because my cancer is weird and not "curable." I was very clear in my first oncology appointment that I had zero interest in prolonging my life at the expense of suffering, and I've been down this road before with loved ones and watched how horrifically they suffered. It's just really hard for people who care about us to let go of us, I think, and that's at the heart of why they don't want to hear that kind of news.
I really like some of these script ideas, and I agree with many of the things people have said, especially darling bri. And I do also think that if you pick a few people you trust the most (although I'm still so enraged by what happened to you at the lake that it's hard for me to imagine there is someone worthy of your trust) and allow them to maybe tell people, it might be easier. Let them do some of the work for a change, and then when they've come to accept things, get in touch with you and just...be your friends. I hope they will rise to the occasion.
Your mom is just going to...be your mom. It's never been easy with her, it sounds like, and I can't imagine this will be smooth. But you can just keep emphasizing that you struggled to come to this decision, and your doctors agree with your choices, and that's that. It is still your life, and for however long you have it, you're the one in charge. If she can't accept it, you have the option to just stop the conversation, walk away, hang up, whatever.
I'm so sorry that this has worked out this way for you. I am rooting for you, and hope that you will keep us in the loop here because so many of us do care.
posted by kitten kaboodle at 10:09 PM on August 27, 2023 [8 favorites]
I really like some of these script ideas, and I agree with many of the things people have said, especially darling bri. And I do also think that if you pick a few people you trust the most (although I'm still so enraged by what happened to you at the lake that it's hard for me to imagine there is someone worthy of your trust) and allow them to maybe tell people, it might be easier. Let them do some of the work for a change, and then when they've come to accept things, get in touch with you and just...be your friends. I hope they will rise to the occasion.
Your mom is just going to...be your mom. It's never been easy with her, it sounds like, and I can't imagine this will be smooth. But you can just keep emphasizing that you struggled to come to this decision, and your doctors agree with your choices, and that's that. It is still your life, and for however long you have it, you're the one in charge. If she can't accept it, you have the option to just stop the conversation, walk away, hang up, whatever.
I'm so sorry that this has worked out this way for you. I am rooting for you, and hope that you will keep us in the loop here because so many of us do care.
posted by kitten kaboodle at 10:09 PM on August 27, 2023 [8 favorites]
Yes I agree with Bottlecap. You can tell people that you are discontinuing chemo and when they ask why you can tell them the truth which is that you don't have enough local support and:
" if I had a better, more localized support system, my decision
might be different. It's not at all easy living alone in a major city and undergoing chemo."
That way they won't pressure you unless they can provide the support you need.
posted by halehale at 4:56 AM on August 28, 2023 [2 favorites]
" if I had a better, more localized support system, my decision
might be different. It's not at all easy living alone in a major city and undergoing chemo."
That way they won't pressure you unless they can provide the support you need.
posted by halehale at 4:56 AM on August 28, 2023 [2 favorites]
For those you don’t want to share the details with: “Great news, I’m done with chemo! Yeah, my quality of life is getting so much better now.”
posted by Secretariat at 8:46 AM on August 28, 2023 [2 favorites]
posted by Secretariat at 8:46 AM on August 28, 2023 [2 favorites]
My (young) best friend is going through this right now - she receives chemo q2w, with the expectation that she'll be doing this until her cancer 'escapes' this drug's suppression effects.
Then she'll have to see what current research is and make decisions about side effects vs quality of life.
She's an extrovert and has been quite public about progress/status to date but her last blood test was concerning (early sign of escape), and she didn't want to share that outside of a tiny circle (eg not the larger community of people she loves), most especially not her parents.
The way she resolved that decision was that at this point nothing is confirmed so there's nothing to tell. She'll discuss with her onco and when something changes definitively, she'll see where she's at.
I'd translate that as 'don't do emotional labor of explaining your decision to people'. All they need to know is that the side effects and process was worse than you'd let on and your symptoms weren't well-controlled with drugs, so you've been told (passive voice is going to help you here in discouraging discussion) to wait and see how research changes the field in the next few years.
I'm so sorry. I'm heartbroken for you that you're alone in your city! As someone whose support system is spread across the US, not where I live, and as a confirmed-single person, I'll be in your situation at some point. It scares me and makes me so angry about the choices we've made societally about supporting people who don't have spouses or children to perform unpaid care labor. :( :( it's BS on all fronts, and I'm sorry it's hitting you today.
posted by esoteric things at 9:37 AM on August 28, 2023 [5 favorites]
Then she'll have to see what current research is and make decisions about side effects vs quality of life.
She's an extrovert and has been quite public about progress/status to date but her last blood test was concerning (early sign of escape), and she didn't want to share that outside of a tiny circle (eg not the larger community of people she loves), most especially not her parents.
The way she resolved that decision was that at this point nothing is confirmed so there's nothing to tell. She'll discuss with her onco and when something changes definitively, she'll see where she's at.
I'd translate that as 'don't do emotional labor of explaining your decision to people'. All they need to know is that the side effects and process was worse than you'd let on and your symptoms weren't well-controlled with drugs, so you've been told (passive voice is going to help you here in discouraging discussion) to wait and see how research changes the field in the next few years.
I'm so sorry. I'm heartbroken for you that you're alone in your city! As someone whose support system is spread across the US, not where I live, and as a confirmed-single person, I'll be in your situation at some point. It scares me and makes me so angry about the choices we've made societally about supporting people who don't have spouses or children to perform unpaid care labor. :( :( it's BS on all fronts, and I'm sorry it's hitting you today.
posted by esoteric things at 9:37 AM on August 28, 2023 [5 favorites]
I did not recommend a guilt trip, I recommended the truth.
I feel like almost everyone is missing the point here. The main reason Dubious_Dude is stopping chemo, against the recommendation from the oncologist, is because there is not enough local support.
Dude would continue if there is local support.
Answers really should be encouraging Dude to let people know that.
posted by halehale at 11:43 AM on August 28, 2023 [2 favorites]
I feel like almost everyone is missing the point here. The main reason Dubious_Dude is stopping chemo, against the recommendation from the oncologist, is because there is not enough local support.
Dude would continue if there is local support.
Answers really should be encouraging Dude to let people know that.
posted by halehale at 11:43 AM on August 28, 2023 [2 favorites]
I feel like almost everyone is missing the point here.
Not really. Dude has made it clear he does not want to get into a debate about his rationale. He has also asked many questions about complicated relationships with family, friends and his wider community. If he has concluded he has limited support from these people…he arguably knows them better than we do. Encouraging him to ask for more help implies he hasn’t tried hard enough to get these people to support him and that seems unlikely.
posted by koahiatamadl at 2:36 PM on August 28, 2023 [7 favorites]
Not really. Dude has made it clear he does not want to get into a debate about his rationale. He has also asked many questions about complicated relationships with family, friends and his wider community. If he has concluded he has limited support from these people…he arguably knows them better than we do. Encouraging him to ask for more help implies he hasn’t tried hard enough to get these people to support him and that seems unlikely.
posted by koahiatamadl at 2:36 PM on August 28, 2023 [7 favorites]
I agree with people who say its personal medical information. I’ve got two friends who had to make choices similar to yours - one whether to take Tamoxifen and another whether to go a very low-intervention watch & wait route for prostate cancer. I think they shared with me because they know I’m a really rational and scientific minded person so I can have those conversations about risks & benefits intelligently. If anyone is going to dispute your choice without actually taking the time to understand it, there’s zero reason for you to go into the details.
posted by haptic_avenger at 3:15 PM on August 28, 2023 [1 favorite]
posted by haptic_avenger at 3:15 PM on August 28, 2023 [1 favorite]
Mod note: Folks, please focus on the question being asked, thank you
posted by jessamyn (staff) at 5:10 PM on August 28, 2023 [2 favorites]
posted by jessamyn (staff) at 5:10 PM on August 28, 2023 [2 favorites]
Response by poster: Here's the script I'm using with people I'm not too extremely close with, or who I fear would have a bad reaction:
Doc and I discussed, right now I’m cancer-free so we decided that chemo treatments can be suspended. Will continue to get tested as needed and keep an eye on my health. Looking forward to the autumn season now!
Thanks again for the wonderful suggestions — will be my last post here so I don't fall into threadsitting territory, but figured my own script would help others in similar predicaments.
posted by dubious_dude at 1:40 PM on August 29, 2023 [16 favorites]
Doc and I discussed, right now I’m cancer-free so we decided that chemo treatments can be suspended. Will continue to get tested as needed and keep an eye on my health. Looking forward to the autumn season now!
Thanks again for the wonderful suggestions — will be my last post here so I don't fall into threadsitting territory, but figured my own script would help others in similar predicaments.
posted by dubious_dude at 1:40 PM on August 29, 2023 [16 favorites]
*applause for you d_d*
posted by kathrynm at 2:04 PM on August 29, 2023 [3 favorites]
posted by kathrynm at 2:04 PM on August 29, 2023 [3 favorites]
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"It hurts too much to discuss." Let them talk for a few more moments without listening/reading, and then say, "I have to go rest now. Good-bye" and disconnect.
If they force contact again: "Please talk to auntie *suitable person if you can't stop talking about this, because I'm not strong enough to support you in your grief when I need to deal with my own." Give them a few seconds to agree to let you go, and whether or not they do, "Goodbye, I love you, I'll talk to you again." Disconnect
If they force contact again even after that or if they push the topic after you reconnect: "This feels like you are blaming me for having cancer. Whatever you think you are saying, all you are doing is hurting me more." Disconnect here
dubious_dude, I wish you good luck, and that the whole process will be far more gentle for you than you expect.
When I was doing the cancer thing, one of my many conflicting thoughts was that the cancer was a good thing, in that it would give me a way to deflect demanding family members. They could attempt to manipulate me all they wanted but they couldn't stop me from escaping them if the cancer killed me. There was a lot of rage involved. I never said it to them, but I certainly thought it, and journaled it.
posted by Jane the Brown at 9:33 AM on August 27, 2023 [51 favorites]