Diagnosed with colon cancer, stage 3. Need help with reactions.
April 25, 2023 10:35 AM Subscribe
My previous Ask, unfortunately, came true—I was diagnosed with colon cancer, confirmed to be at/around Stage 3. I've lined up appointments with an oncologist and consultation with the surgery department. When I made the announcement to family and friends, reactions, predictably, has been mixed. I need some help managing my feelings about reactions and how they affect me.
I'm not completely sure if this makes much sense, but I'll do the best I can to explain. I will also talk about this with my therapist.
When I found out I possibly could have colon cancer last week, I was emotionally shook up. I reached out to family and close friends. They were great and very supportive. This was more of a reaction, though, and when I've had time to sit down and process it, I ended up becoming more accepting and resigned to the fact that I had cancer, because sometimes reality has a way of catching up with you. On Friday, I found out officially via the biopsy that I had colon cancer, and the doctor said the oncologist would confirm the stage of the cancer. I didn't tell anyone, because I needed time to sit with it over the weekend. I was okay with the diagnosis, but wanted to know the stage. Yesterday, I found out from the oncologist that it was possibly at 3, but needed to do some staging/imaging to truly determine the damage. I then told family/close friends, then announced it to my greater friend circle.
I've been overwhelmed at all the reactions. It's truly been a mix of "omg, hugs hard, I'm so sorry" to "no worries, you'll beat this!" I'm particularly overwhelmed at how some people seem very emotionally impacted by this, who toss suggestions on how to help, or seem hit hard.
An example includes my mom, who I've asked about a few times in the past. Our relationship is a complicated one, and she can honestly be overbearing at times and is the type who always needs to be in control of things (I guess that's where I got it from), and she has ran hot/cold oftentimes in the past. Sometimes she seemed to care (too much) about me, other times it was like she couldn't give a F. Lately (pre-cancer scare), I've been talking with my therapist about her, and past traumas associated with her, and I've realized I have been holding a lot of anger towards my mom for various things she did or said in the past. This is something I have been working on, because I acknowledge it's not healthy.
When I announced the potential of cancer to my family last week, everyone in my family was very supportive and kind and said they would be there for me if I needed them. They were more "hands off" and showed their kind words, and that was perfectly enough. My mom, however, immediately asked to FaceTime right there and then (when I needed to be alone to process), asked a lot of personal medical questions, asked to see the doctor's notes, said she would want to be there for my surgery, and just kind of seemed really on it. I know it seems cold/weird of me, but I honestly felt smothered by her questions, reactions, and I felt she was jumping ahead way too fast (when it wasn't even official). She has a tendency sometimes to treat me like a child (overprotective, probably because I'm Deaf).
When I announced the official diagnosis, she asked if I wanted her to join the virtual meeting I had set up with the oncologist. I again felt smothered, because this is my journey, something I need to deal with, and when I need help, I will ask for it. I answered and said no, because it was on the Kaiser portal and not accessible (which is true) and that I would reach out when I needed to.
I know she means well, but my observation is a few things possibly can be in play here: a) her need of control; b) trauma response; her mom died from cancer; and c) I'm her first child, she probably feels helpless here. I do understand that, but I'm still managing my own feelings, and I really don't need to feel like I need to "help" my mom, in addition to what I'm going through.
I've been feeling immensely guilty about those internal feelings I'm having, though, and I feel like a bad person for even thinking those things about my mom. A lot of people aren't lucky to have a mom who wants to help, but it's just that her style is so overbearing, even though she probably doesn't mean to. I don't want to feel bad about brushing her off or refusing her offers to help, to make her feel bad, but this is my journey, and something I need to navigate and figure out on my own.
A few friends has also been horrified, sending me various links on how to cleanse my colon, diet suggestions, etc. While I understand their intentions are good, it's not really what I need or want right now.
What I really want/need right now is to sit on my feelings, process this, talk with my oncologist and surgeon individually, figure out what to do next, and if I need help/suggestions, I will ask for it.
I know cancer is scary to a lot of people, and this was quite upsetting to me, but the truth is, I'm okay with it right now. I've accepted this is my new reality, and I will do what I need to do to address it. It's an emotional roller coaster, yes, but it's something I also need to figure out, too. I just need help managing my reaction to others' reactions, because it's amazing and wonderful that so many people care, but I'm just overwhelmed and my people-pleaser tendencies make it hard to draw boundaries sometimes, especially with my mom. There's also that dreadful guilt for the feelings I'm having about my mom.
Any advice on how to manage this would be really helpful. Thanks!
I'm not completely sure if this makes much sense, but I'll do the best I can to explain. I will also talk about this with my therapist.
When I found out I possibly could have colon cancer last week, I was emotionally shook up. I reached out to family and close friends. They were great and very supportive. This was more of a reaction, though, and when I've had time to sit down and process it, I ended up becoming more accepting and resigned to the fact that I had cancer, because sometimes reality has a way of catching up with you. On Friday, I found out officially via the biopsy that I had colon cancer, and the doctor said the oncologist would confirm the stage of the cancer. I didn't tell anyone, because I needed time to sit with it over the weekend. I was okay with the diagnosis, but wanted to know the stage. Yesterday, I found out from the oncologist that it was possibly at 3, but needed to do some staging/imaging to truly determine the damage. I then told family/close friends, then announced it to my greater friend circle.
I've been overwhelmed at all the reactions. It's truly been a mix of "omg, hugs hard, I'm so sorry" to "no worries, you'll beat this!" I'm particularly overwhelmed at how some people seem very emotionally impacted by this, who toss suggestions on how to help, or seem hit hard.
An example includes my mom, who I've asked about a few times in the past. Our relationship is a complicated one, and she can honestly be overbearing at times and is the type who always needs to be in control of things (I guess that's where I got it from), and she has ran hot/cold oftentimes in the past. Sometimes she seemed to care (too much) about me, other times it was like she couldn't give a F. Lately (pre-cancer scare), I've been talking with my therapist about her, and past traumas associated with her, and I've realized I have been holding a lot of anger towards my mom for various things she did or said in the past. This is something I have been working on, because I acknowledge it's not healthy.
When I announced the potential of cancer to my family last week, everyone in my family was very supportive and kind and said they would be there for me if I needed them. They were more "hands off" and showed their kind words, and that was perfectly enough. My mom, however, immediately asked to FaceTime right there and then (when I needed to be alone to process), asked a lot of personal medical questions, asked to see the doctor's notes, said she would want to be there for my surgery, and just kind of seemed really on it. I know it seems cold/weird of me, but I honestly felt smothered by her questions, reactions, and I felt she was jumping ahead way too fast (when it wasn't even official). She has a tendency sometimes to treat me like a child (overprotective, probably because I'm Deaf).
When I announced the official diagnosis, she asked if I wanted her to join the virtual meeting I had set up with the oncologist. I again felt smothered, because this is my journey, something I need to deal with, and when I need help, I will ask for it. I answered and said no, because it was on the Kaiser portal and not accessible (which is true) and that I would reach out when I needed to.
I know she means well, but my observation is a few things possibly can be in play here: a) her need of control; b) trauma response; her mom died from cancer; and c) I'm her first child, she probably feels helpless here. I do understand that, but I'm still managing my own feelings, and I really don't need to feel like I need to "help" my mom, in addition to what I'm going through.
I've been feeling immensely guilty about those internal feelings I'm having, though, and I feel like a bad person for even thinking those things about my mom. A lot of people aren't lucky to have a mom who wants to help, but it's just that her style is so overbearing, even though she probably doesn't mean to. I don't want to feel bad about brushing her off or refusing her offers to help, to make her feel bad, but this is my journey, and something I need to navigate and figure out on my own.
A few friends has also been horrified, sending me various links on how to cleanse my colon, diet suggestions, etc. While I understand their intentions are good, it's not really what I need or want right now.
What I really want/need right now is to sit on my feelings, process this, talk with my oncologist and surgeon individually, figure out what to do next, and if I need help/suggestions, I will ask for it.
I know cancer is scary to a lot of people, and this was quite upsetting to me, but the truth is, I'm okay with it right now. I've accepted this is my new reality, and I will do what I need to do to address it. It's an emotional roller coaster, yes, but it's something I also need to figure out, too. I just need help managing my reaction to others' reactions, because it's amazing and wonderful that so many people care, but I'm just overwhelmed and my people-pleaser tendencies make it hard to draw boundaries sometimes, especially with my mom. There's also that dreadful guilt for the feelings I'm having about my mom.
Any advice on how to manage this would be really helpful. Thanks!
If there's someone you *do* feel okay leaning on here, this is a prime opportunity to appoint them your gatekeeper even just for a few weeks. Offers to help, good wishes, questions, all go through them. If you want to give people updates (you don't have to!) that person can keep a group text updated. They screen out all colon cleanse and diet suggestions, save the rest for only when you ask for it, and pass along any requests for help that you do have and organize the responses.
That may not work with your mother, but buying yourself back some space from your well meaning but stressful friends might help make it easier for you to deal with your mom.
I'm sorry for the difficult news, glad your care team is hard at work for you, and hope you can prioritize your own needs here. You sound like you're approaching this very reasonably and are absolutely right to keep your mom at arm's length right now.
posted by Stacey at 10:53 AM on April 25, 2023 [21 favorites]
That may not work with your mother, but buying yourself back some space from your well meaning but stressful friends might help make it easier for you to deal with your mom.
I'm sorry for the difficult news, glad your care team is hard at work for you, and hope you can prioritize your own needs here. You sound like you're approaching this very reasonably and are absolutely right to keep your mom at arm's length right now.
posted by Stacey at 10:53 AM on April 25, 2023 [21 favorites]
Boy, I am flashing back to October when I had to attend my mother's funeral. She declined very quickly after a longer period of moderately poor health so it all happened fast at the end. I was so overwhelmed with the social element of the funeral. I was overwhelmed when the final issues were at their apex and feeling the need to manage people's feelings. I'm pretty sure events like this activate people's attachment systems and this was confirmation for me that my attachment still leans towards avoidant.
I think this might be a great opportunity to set some boundaries. With the friends I would probably just ignore but with mom you might tell her you appreciate her concern but are overwhelmed and need to slow down and reach out when you're ready.
Thing is, not everyone would read your mom's reaction as overbearing. But it's totally ok that you do read it that way. She might know she comes across like this or she may not. Give her an opportunity to practice the platinum rule instead of the golden one. No need to feel guilty about asking for what you need. Especially since that is, on the surface of things, what she's offering you.
posted by crunchy potato at 10:56 AM on April 25, 2023 [2 favorites]
I think this might be a great opportunity to set some boundaries. With the friends I would probably just ignore but with mom you might tell her you appreciate her concern but are overwhelmed and need to slow down and reach out when you're ready.
Thing is, not everyone would read your mom's reaction as overbearing. But it's totally ok that you do read it that way. She might know she comes across like this or she may not. Give her an opportunity to practice the platinum rule instead of the golden one. No need to feel guilty about asking for what you need. Especially since that is, on the surface of things, what she's offering you.
posted by crunchy potato at 10:56 AM on April 25, 2023 [2 favorites]
Anecdotally, I know every single one of my friends who has been diagnosed with cancer very much appreciated having someone with them at every appointment. Someone else taking notes and keeping track of what was said was invaluable. It was also extremely important to make sure it was always the same person coming along, as far as possible, because that's what made it possible for the notes to be readable for nothing important to be missed (someone new might not have enough context to know what was going on).
Whether or not it's your mom, I do hope you take someone consistent and reliable along with you to your appointment. We'll be thinking of you.
posted by MiraK at 10:56 AM on April 25, 2023 [26 favorites]
Whether or not it's your mom, I do hope you take someone consistent and reliable along with you to your appointment. We'll be thinking of you.
posted by MiraK at 10:56 AM on April 25, 2023 [26 favorites]
I have a congenital neurological condition that started giving me problems in my early teens. My mom dismissed my concerns and complaints, told me it was "just migraines," acted like I was being dramatic and making excuses for being lazy, and didn't take me to the doctor for it.
Then a few years later when I got brave enough to bring it up myself with my pediatrician at an annual physical, and was immediately sent to a neurologist for MRIs and my diagnosis, it was like a switch was flipped. Instead of being dismissive and critical, my mom became oppressively overbearing in how involved she was. She compiled massive folders of data, found early internet forums of other people who have my condition so she could grill me about symptoms, restricted me from doing things I was perfectly capable of doing... She even, in a desperate fit to exert her last bit of control over me a few weeks before I was leaving for college, told me she was going to call my university and defer my enrollment for a year and make me get brain surgery (I did not need brain surgery).
After I finally got out and got space from her I realized the last few years of her being Extremely Problematically Involved really was more of a manifestation of her guilt for how bad she sucked for the first few years I went without treatment. It was her not having a healthy way to deal with her own shit, so she fixated it on me.
It's possible this could be what's going on with your mom, that she has (or believes she has) treated you poorly or neglectfully in the past, and this is her grand chance to make it up to you in the way she feels is most expedient and visible, even if it's not what you need or want. Your therapist can help you work through this, mine did.
posted by phunniemee at 10:59 AM on April 25, 2023 [20 favorites]
Then a few years later when I got brave enough to bring it up myself with my pediatrician at an annual physical, and was immediately sent to a neurologist for MRIs and my diagnosis, it was like a switch was flipped. Instead of being dismissive and critical, my mom became oppressively overbearing in how involved she was. She compiled massive folders of data, found early internet forums of other people who have my condition so she could grill me about symptoms, restricted me from doing things I was perfectly capable of doing... She even, in a desperate fit to exert her last bit of control over me a few weeks before I was leaving for college, told me she was going to call my university and defer my enrollment for a year and make me get brain surgery (I did not need brain surgery).
After I finally got out and got space from her I realized the last few years of her being Extremely Problematically Involved really was more of a manifestation of her guilt for how bad she sucked for the first few years I went without treatment. It was her not having a healthy way to deal with her own shit, so she fixated it on me.
It's possible this could be what's going on with your mom, that she has (or believes she has) treated you poorly or neglectfully in the past, and this is her grand chance to make it up to you in the way she feels is most expedient and visible, even if it's not what you need or want. Your therapist can help you work through this, mine did.
posted by phunniemee at 10:59 AM on April 25, 2023 [20 favorites]
are we related? Your mom is my mom so I GET it.
First off your mom capital L Loves you and is terrified to lose you and her coping is to control All The Things so her Baby is OK.
Maybe it’ll feel good to say mom I love you, I need some space right now, I’ll call you when I need your organizing skills. And in the mean time can you…. And then give her a list of things to do. Can you research XYZ, call ABC people, get me groceries, anything.
I am so so sorry for all this and you have the metafilter community love and support.
posted by St. Peepsburg at 11:01 AM on April 25, 2023 [30 favorites]
First off your mom capital L Loves you and is terrified to lose you and her coping is to control All The Things so her Baby is OK.
Maybe it’ll feel good to say mom I love you, I need some space right now, I’ll call you when I need your organizing skills. And in the mean time can you…. And then give her a list of things to do. Can you research XYZ, call ABC people, get me groceries, anything.
I am so so sorry for all this and you have the metafilter community love and support.
posted by St. Peepsburg at 11:01 AM on April 25, 2023 [30 favorites]
If it helps to hear, my mom was possibly the LAST person to know about my disease because, hoo boy, I did NOT need everything that I thought might follow.
Eventually I told her and, you know what? It wasn't quite as bad as my worst fears. But it was pretty bad! And, yeah, there might be Reasons and it was probably hard for her and it probably came from a good place, but HELLO! Person with a disease here! I just didn't need it!
So this internet stranger is giving you permission to not feel guilty about your dealings with your mom. You don't need that on your plate.
I wish you the best. And it's awesome that you already have that therapist. Mine helped me possibly more than my other doctors.
posted by fruitslinger at 11:20 AM on April 25, 2023 [1 favorite]
Eventually I told her and, you know what? It wasn't quite as bad as my worst fears. But it was pretty bad! And, yeah, there might be Reasons and it was probably hard for her and it probably came from a good place, but HELLO! Person with a disease here! I just didn't need it!
So this internet stranger is giving you permission to not feel guilty about your dealings with your mom. You don't need that on your plate.
I wish you the best. And it's awesome that you already have that therapist. Mine helped me possibly more than my other doctors.
posted by fruitslinger at 11:20 AM on April 25, 2023 [1 favorite]
(Sorry for centering myself. That's my neurodivergent brain sharing my experience as a way to demonstrate understanding but I realize it can come across otherwise.)
It's ok to take the space you need from people that try to Do and Problem Solve because it's so hard for them to bear their feelings of helplessness.
posted by crunchy potato at 11:20 AM on April 25, 2023 [6 favorites]
It's ok to take the space you need from people that try to Do and Problem Solve because it's so hard for them to bear their feelings of helplessness.
posted by crunchy potato at 11:20 AM on April 25, 2023 [6 favorites]
I logged in just to upvote St. Peepsburg who encapsulates my thoughts exactly. Also I am wishing you the best.
posted by Saucywench at 11:24 AM on April 25, 2023 [1 favorite]
posted by Saucywench at 11:24 AM on April 25, 2023 [1 favorite]
I'm not sure I have meaningful advice here but just wanted to say I've read many of your past MetaFilter questions and they've really resonated with me. I live in DC as well and if you need support around anything, I'd love to support you in any way I can. I sent you a DM as well--feel free to reach out.
posted by armadillo1224 at 11:25 AM on April 25, 2023 [18 favorites]
posted by armadillo1224 at 11:25 AM on April 25, 2023 [18 favorites]
First, the good that came of this. One, your mom does love you. I happen to fall into the camp whereby she is feeling guilty and trying to make up for lost time. Two, you have separated your friends into two groups, one that is very supportive and one that seems to want to send you homeopathic (at best) solutions. I would refrain from telling the latter group many updates as you go through the process of trying to beat cancer. If you need or want to tell people, I would focus on the small group you trust and that has been supportive.
Second, you're an adult. You are driving the car. You make all the decisions. Do NOT feel guilty about not including your mother in every detail. In fact, I would give her timely but somewhat vague updates. You cannot control how people react to news, but you can control what news you give them.
Everybody deals with adversity in their own way. I happen to deal with it similar to you in that it becomes my new reality and I face it head on. No reason to fret about the what ifs or coulda woulda shoulda s. You do every thing at your own pace. Make your won decisions. Include others on your terms not theirs. (That may require you laying out your terms in a clear fashion.
Good luck. Bless you.
posted by JohnnyGunn at 12:02 PM on April 25, 2023 [4 favorites]
Second, you're an adult. You are driving the car. You make all the decisions. Do NOT feel guilty about not including your mother in every detail. In fact, I would give her timely but somewhat vague updates. You cannot control how people react to news, but you can control what news you give them.
Everybody deals with adversity in their own way. I happen to deal with it similar to you in that it becomes my new reality and I face it head on. No reason to fret about the what ifs or coulda woulda shoulda s. You do every thing at your own pace. Make your won decisions. Include others on your terms not theirs. (That may require you laying out your terms in a clear fashion.
Good luck. Bless you.
posted by JohnnyGunn at 12:02 PM on April 25, 2023 [4 favorites]
I am sorry for this shocking scary diagnosis.
However you feel about any of this - at any given moment, because it's going to fluctuate - is FINE and normal and okay, and that includes being unsettled by the weird-even-at-the-best-of-times ways that many moms are gonna mom in a crisis when you are an adult with your own thoughts and feelings about how you want to manage the situation.
And it is okay and good to give yourself permission to be unsettled and not exactly sure what to do about her for now. Her reaction is first and foremost about her, and then sorta second about this relationship, and then third-ish about genuinely wanting to help you in ways that moms have been programmed by life to help (and often are defaulted to the position as your legal second-in-charge, when you are single). All this to say it's OKAY to understand that she means well and to understand she's probably scared for you and for herself, but to also recognize that she is maybe not exactly the wingperson you need for this situation.
And that's okay because most people aren't going to be that either - unless your mom is like an oncology nurse or has some other expertise, just being your mom does not automatically put her in first place. You may recognize that the primary help you need at this time is practical support from someone who lives nearby. That's not a diss on your mom, that's not judging her unfairly, you're not being mean to her, because you are an adult and you can and should be calling the shots. You GET to tell her no (and she gets to not like it, and honestly that's not any of your business how she deals with her feelings) when you need to tell her no. You can't fix her guilt right now. You can't fix her trauma and/or your trauma right now. You are busy with something very important at the moment, and your decisions need to reflect that.
It doesn't actually matter that some people don't have a supportive mom when they have cancer, because it's not like you're taking up a mom somebody else could be using, because it doesn't work that way. And while she may perceive it as an insult if you need her at an arm's length, that is going to have to be her problem to solve because you have to do what is right for you first and foremost here.
Again: you have to do what is right for you first and foremost here, or it runs a risk of derailing your treatment. This isn't just people being displeased with you as the worst possible consequence anymore, and you should take that win and run with it now that you don't really have a choice. If there was ever a perfect point to look around and say, "I cannot manage any of y'all's feelings for you anymore, I am KINDA BUSY over here", it is right now at this point in your life.
I would suggest you find a phrase you are comfortable with to stop people with all their unhelpful suggestions because cancer really brings out the bongos in some people. It is okay to say, "I know you mean well and thank you, but I don't need that kind of advice/help/vibes/attitude/bullshit right now." And it is appropriate to feel and be super grateful when people care a lot, even if they are really awkward about it, and it is grace for both of you for you to acknowledge the intention and care but also set a little boundary. Even with your mom, it is grace for you to recognize that she does seem to care a lot - and be super grateful for it, and say so - and also recognize that boundaries will help keep that from turning into the problem you know it's gonna if you let her run wild over you and herself.
Remember that boundaries are a gift: they stop people having to guess. They allow people to get a hold of themselves when they are having their own trauma response to your trauma, which again is not your circus or your monkeys to deal with right now because you are busy with your own active trauma at this time.
The other thing you can say to people who are offering decent normal practical help but now isn't the right time: "Thank you so much for caring and offering; I don't need that right now but I am keeping a list." And keep a list! I suggest putting it in Google Docs - offers of help, listings of people who do have some expertise or knowledge that may come in handy later, plus a running tally of all the members of your medical care teams with contact info. Eventually you should designate some kind of second-in-command to manage both communications and logistics during the times you are incapacitated, and you can share that doc with them and they can add to it as they handle communications and support coordination. There is no actual reason that person has to be your mom.
posted by Lyn Never at 12:16 PM on April 25, 2023 [5 favorites]
However you feel about any of this - at any given moment, because it's going to fluctuate - is FINE and normal and okay, and that includes being unsettled by the weird-even-at-the-best-of-times ways that many moms are gonna mom in a crisis when you are an adult with your own thoughts and feelings about how you want to manage the situation.
And it is okay and good to give yourself permission to be unsettled and not exactly sure what to do about her for now. Her reaction is first and foremost about her, and then sorta second about this relationship, and then third-ish about genuinely wanting to help you in ways that moms have been programmed by life to help (and often are defaulted to the position as your legal second-in-charge, when you are single). All this to say it's OKAY to understand that she means well and to understand she's probably scared for you and for herself, but to also recognize that she is maybe not exactly the wingperson you need for this situation.
And that's okay because most people aren't going to be that either - unless your mom is like an oncology nurse or has some other expertise, just being your mom does not automatically put her in first place. You may recognize that the primary help you need at this time is practical support from someone who lives nearby. That's not a diss on your mom, that's not judging her unfairly, you're not being mean to her, because you are an adult and you can and should be calling the shots. You GET to tell her no (and she gets to not like it, and honestly that's not any of your business how she deals with her feelings) when you need to tell her no. You can't fix her guilt right now. You can't fix her trauma and/or your trauma right now. You are busy with something very important at the moment, and your decisions need to reflect that.
It doesn't actually matter that some people don't have a supportive mom when they have cancer, because it's not like you're taking up a mom somebody else could be using, because it doesn't work that way. And while she may perceive it as an insult if you need her at an arm's length, that is going to have to be her problem to solve because you have to do what is right for you first and foremost here.
Again: you have to do what is right for you first and foremost here, or it runs a risk of derailing your treatment. This isn't just people being displeased with you as the worst possible consequence anymore, and you should take that win and run with it now that you don't really have a choice. If there was ever a perfect point to look around and say, "I cannot manage any of y'all's feelings for you anymore, I am KINDA BUSY over here", it is right now at this point in your life.
I would suggest you find a phrase you are comfortable with to stop people with all their unhelpful suggestions because cancer really brings out the bongos in some people. It is okay to say, "I know you mean well and thank you, but I don't need that kind of advice/help/vibes/attitude/bullshit right now." And it is appropriate to feel and be super grateful when people care a lot, even if they are really awkward about it, and it is grace for both of you for you to acknowledge the intention and care but also set a little boundary. Even with your mom, it is grace for you to recognize that she does seem to care a lot - and be super grateful for it, and say so - and also recognize that boundaries will help keep that from turning into the problem you know it's gonna if you let her run wild over you and herself.
Remember that boundaries are a gift: they stop people having to guess. They allow people to get a hold of themselves when they are having their own trauma response to your trauma, which again is not your circus or your monkeys to deal with right now because you are busy with your own active trauma at this time.
The other thing you can say to people who are offering decent normal practical help but now isn't the right time: "Thank you so much for caring and offering; I don't need that right now but I am keeping a list." And keep a list! I suggest putting it in Google Docs - offers of help, listings of people who do have some expertise or knowledge that may come in handy later, plus a running tally of all the members of your medical care teams with contact info. Eventually you should designate some kind of second-in-command to manage both communications and logistics during the times you are incapacitated, and you can share that doc with them and they can add to it as they handle communications and support coordination. There is no actual reason that person has to be your mom.
posted by Lyn Never at 12:16 PM on April 25, 2023 [5 favorites]
So, your strong people-pleaser, good-son instincts are in conflict with your need to turn inwards for a bit. Would it be helpful to develop a script like "I appreciate your intentions (what you're offering, your offer, whatever). I'll let you know what I need" or "I'm not sure what I need quite yet. Let me get back to you." that you can repeat without thinking or perseverating about it too much?
Repeat to yourself: comfort in, stress out. Anyone who isn't cooperating with that, including your own mind at times, doesn't get brain space.
posted by Dashy at 12:19 PM on April 25, 2023 [3 favorites]
Repeat to yourself: comfort in, stress out. Anyone who isn't cooperating with that, including your own mind at times, doesn't get brain space.
posted by Dashy at 12:19 PM on April 25, 2023 [3 favorites]
Oh yeah my mom doesn’t know about any of my medical shit until it is passed because she is like this. It’s hard to describe to people without them saying “she just loves you!” But it is different.
You probably will want and need some support, and I suggest talking to the oncologist about what social support programs they have available. My cancer center has me set up with a case worker who comes to all my appointments. It’s nice because it’s someone I don’t know and doesn’t have that overwhelming emotional investment. She is good at taking notes and I can call her in between appointments to say “hey can you help me with X Task that is overwhelming?” Or “I want to remember to ask about Y at my next appointment.” It’s a really nice way of getting the support I need without having to navigate other people’s emotions.
posted by Bottlecap at 12:22 PM on April 25, 2023 [8 favorites]
You probably will want and need some support, and I suggest talking to the oncologist about what social support programs they have available. My cancer center has me set up with a case worker who comes to all my appointments. It’s nice because it’s someone I don’t know and doesn’t have that overwhelming emotional investment. She is good at taking notes and I can call her in between appointments to say “hey can you help me with X Task that is overwhelming?” Or “I want to remember to ask about Y at my next appointment.” It’s a really nice way of getting the support I need without having to navigate other people’s emotions.
posted by Bottlecap at 12:22 PM on April 25, 2023 [8 favorites]
Yes, my mother does shit like this. I've learned to never tell her anything personal, especially about medical stuff, b/c I just cannot handle when she jumps into this overbearing mode. It's like, it becomes all about her, even when it's my serious medical issues. Her reactions tend to be very over the top in general, and it's just too much for me to handle.
You need to prioritize yourself. Share as much or as little information with her as you want. Lean on the people who are able to support you in the way that works for YOU. This isn't about your mother or what anyone else needs.
I've read a lot of your asks over the years, and I'm just so sorry to hear about this. It sounds like you are handling this as well as anyone can handle such difficult news. Please do whatever you need to in order to take care of yourself.
posted by litera scripta manet at 12:59 PM on April 25, 2023 [5 favorites]
You need to prioritize yourself. Share as much or as little information with her as you want. Lean on the people who are able to support you in the way that works for YOU. This isn't about your mother or what anyone else needs.
I've read a lot of your asks over the years, and I'm just so sorry to hear about this. It sounds like you are handling this as well as anyone can handle such difficult news. Please do whatever you need to in order to take care of yourself.
posted by litera scripta manet at 12:59 PM on April 25, 2023 [5 favorites]
I was diagnosed with a different form of cancer in 2019 and I feel this so much! I too wanted to tackle it on my own - I absolutely did not want other people to come to appointments with me. It would have been distracting for me. That is OK. This is your life.
I have parents who can be anxious and told them that the biggest thing they could do for me was to be chill about my diagnosis, not anxious, and not bombard me with questions. I told them what I could use (rides, etc.) I think it really helped for me to articulate my needs. Personally I would tell people that I know their concern is coming from a good place but I need something else right now, and to be specific about what I need.
I know you are feeling guilt and have people pleasing tendencies - think about how articulating your needs (even if you need nothing, or only distractions from cancer) is actually helping people! Otherwise they are just guessing what you need.
posted by beyond_pink at 1:23 PM on April 25, 2023 [7 favorites]
I have parents who can be anxious and told them that the biggest thing they could do for me was to be chill about my diagnosis, not anxious, and not bombard me with questions. I told them what I could use (rides, etc.) I think it really helped for me to articulate my needs. Personally I would tell people that I know their concern is coming from a good place but I need something else right now, and to be specific about what I need.
I know you are feeling guilt and have people pleasing tendencies - think about how articulating your needs (even if you need nothing, or only distractions from cancer) is actually helping people! Otherwise they are just guessing what you need.
posted by beyond_pink at 1:23 PM on April 25, 2023 [7 favorites]
Can I just say that it actually is EXTREMELY useful to have someone attend appointments with you? It doesn't have to be your mother (and sounds like you strongly prefer it's not) but it's also so overwhelming, and the instinct to just nod and agree with the doctor in the white coat and not ask questions is SO STRONG when you're the patient. When you're not the patient, not so much.
I loved when my partner was able to make it to my cancer appointments as he asked hard questions and took notes. I wish for the appts he couldn't make I had asked a friend to come with me.
I also wish my mother had been as interested as yours is -- I'm not saying you have to engage, but at least consider embracing the fact that she cares as a positive. (Of course, she wants to be there for your surgery!) I got a lot of the "passive" help you admire from your other relatives (and I totally get why this is a good thing) but I actually often needed and wished for, like, really active help. Try to get this from someone, even if it's not your mother.
posted by heavenknows at 1:26 PM on April 25, 2023 [2 favorites]
I loved when my partner was able to make it to my cancer appointments as he asked hard questions and took notes. I wish for the appts he couldn't make I had asked a friend to come with me.
I also wish my mother had been as interested as yours is -- I'm not saying you have to engage, but at least consider embracing the fact that she cares as a positive. (Of course, she wants to be there for your surgery!) I got a lot of the "passive" help you admire from your other relatives (and I totally get why this is a good thing) but I actually often needed and wished for, like, really active help. Try to get this from someone, even if it's not your mother.
posted by heavenknows at 1:26 PM on April 25, 2023 [2 favorites]
Yeah. My spouse and I have a way of saying "how ARE you?" that comes from after we lost our daughter. As a general rule, people just don't know how to react well to really hard times in general and they also don't know how to react for you specifically. There will be stand outs in ways you don't expect like the friend you didn't think was that close knows what to do and how to really be there, and the friend that you're closest to is weird and all those things.
My mantra for myself was "this is a weird time, people are therefore just weirding."
I actually stopped listening to my friends' words and I just kind of went on their actions. I didn't listen to their advice and recommendations or concept of what my timeline of grief should be or what juice I should be drinking. I tried just to respond to their impulses to connect.
This is why I don't have a lot of advice for you, just stories to share.
I feel like a bad person for even thinking those things about my mom.
You're not. It's just fine to have feelings and think things, and it's 100% okay to only involve her the way that you want to involve her. And it's okay to not know what that is! I think what you said was perfect.
The ring theory of support is really helpful for this, could a relative introduce this to your mum? But also please take in that you're in the centre of the circle...if you can. See, oops, advice.
Since I went there, here's an idea for a distraction project: I was going though a cancer scare (sorry yours is not just a scare), I gave my mother the request to build a complete family medical history as best she could. This was a) not actionable (not like an article where she might ask me if I started drinking blackberry juice or something), b) took a long time and c) actually has been kind of neat to have.
posted by warriorqueen at 1:32 PM on April 25, 2023 [10 favorites]
My mantra for myself was "this is a weird time, people are therefore just weirding."
I actually stopped listening to my friends' words and I just kind of went on their actions. I didn't listen to their advice and recommendations or concept of what my timeline of grief should be or what juice I should be drinking. I tried just to respond to their impulses to connect.
This is why I don't have a lot of advice for you, just stories to share.
I feel like a bad person for even thinking those things about my mom.
You're not. It's just fine to have feelings and think things, and it's 100% okay to only involve her the way that you want to involve her. And it's okay to not know what that is! I think what you said was perfect.
The ring theory of support is really helpful for this, could a relative introduce this to your mum? But also please take in that you're in the centre of the circle...if you can. See, oops, advice.
Since I went there, here's an idea for a distraction project: I was going though a cancer scare (sorry yours is not just a scare), I gave my mother the request to build a complete family medical history as best she could. This was a) not actionable (not like an article where she might ask me if I started drinking blackberry juice or something), b) took a long time and c) actually has been kind of neat to have.
posted by warriorqueen at 1:32 PM on April 25, 2023 [10 favorites]
Yeah, thirding the dual message of "your mom doesn't have to be there" but also "you really should have a 'medical secretary' to take good notes."
The latter role is both to be there to look stuff up during appointments (e.g., a question that you wanted to remember to ask, or when symptoms occurred, or whatever), and also between appointments, when you need to recall something the doctors told you. Another important time is when you might need to recall something for one person that another person told you.
I do this for my wife: I go to every appointment and bring my pile of little notebooks (for which I had to make a leather cover to keep them in order), and confirm dates or names, or whatever. I otherwise STFU and sit in the corner: I can be a supportive husband and charming conversationalist at home, but during an appointment I am on the job.
posted by wenestvedt at 1:35 PM on April 25, 2023 [8 favorites]
The latter role is both to be there to look stuff up during appointments (e.g., a question that you wanted to remember to ask, or when symptoms occurred, or whatever), and also between appointments, when you need to recall something the doctors told you. Another important time is when you might need to recall something for one person that another person told you.
I do this for my wife: I go to every appointment and bring my pile of little notebooks (for which I had to make a leather cover to keep them in order), and confirm dates or names, or whatever. I otherwise STFU and sit in the corner: I can be a supportive husband and charming conversationalist at home, but during an appointment I am on the job.
posted by wenestvedt at 1:35 PM on April 25, 2023 [8 favorites]
So sorry. Only good thoughts here.
But, having gone through a near-death medical thing last year...
You want someone there. Even if it is your (potentially terrible) mother. When you are on painkillers, weird shit can happen. And not even to mention the potential aftercare. Colostomy bags are a bummer. But, I digress. good luck dubious_dude. We are all counting on you...
posted by Windopaene at 2:49 PM on April 25, 2023 [1 favorite]
But, having gone through a near-death medical thing last year...
You want someone there. Even if it is your (potentially terrible) mother. When you are on painkillers, weird shit can happen. And not even to mention the potential aftercare. Colostomy bags are a bummer. But, I digress. good luck dubious_dude. We are all counting on you...
posted by Windopaene at 2:49 PM on April 25, 2023 [1 favorite]
Not so much actionable advice, but it may be helpful to keep the following in mind to ground you and maintain perspective when you're interacting with mom (and some of your friends):
You're spot-on that cancer is scary to a lot of people, and definitely to your mom specifically, due to her history both with her own mom and with how she's raised/interacted with you. So that means her attempts to help you and be involved, which you experience as intrusive, are likely to be her way of coping with her own feelings and reactions. And she's coping with them in a way that seems to overrun your preferences for how to deal with/receive support around this illness. This is probably the dynamic as well with the cleanse-suggesting, diet-advice-giving friends. People are feeling scared and helpless at this development, and this is the way some people try to feel less scared and helpless.
It's not on its own good or bad, but just different from what you know you're needing from others right now.
So the next time you interact with mom or these friends around the subject of your cancer, can you try to keep in mind that feelings and actions, even if related to each other, are ultimately distinct from each other? That the feelings - love, concern, fear, a wish to help - can perfectly coexist with actions - asking detailed medical questions, trying to invite herself to your appointments, unsolicited advice - that you experience (rightly, I think) as intrusive? There is nothing incompatible about knowing both that your mom and family and friends love and support you, and that some of their ways of showing it just miss the mark for you. Keeping this distinction in mind may also help you to be explicit in letting them know what works best for you, in case you haven't communicated that clearly yet. (Ok, I guess there is some actionable advice here after all.)
Having said all that, I'm sorry to hear about the diagnosis, though I'm glad to see that you're taking it in stride. Wishing you a full recovery, whatever that needs to look like for you.
posted by obliterati at 2:51 PM on April 25, 2023 [2 favorites]
You're spot-on that cancer is scary to a lot of people, and definitely to your mom specifically, due to her history both with her own mom and with how she's raised/interacted with you. So that means her attempts to help you and be involved, which you experience as intrusive, are likely to be her way of coping with her own feelings and reactions. And she's coping with them in a way that seems to overrun your preferences for how to deal with/receive support around this illness. This is probably the dynamic as well with the cleanse-suggesting, diet-advice-giving friends. People are feeling scared and helpless at this development, and this is the way some people try to feel less scared and helpless.
It's not on its own good or bad, but just different from what you know you're needing from others right now.
So the next time you interact with mom or these friends around the subject of your cancer, can you try to keep in mind that feelings and actions, even if related to each other, are ultimately distinct from each other? That the feelings - love, concern, fear, a wish to help - can perfectly coexist with actions - asking detailed medical questions, trying to invite herself to your appointments, unsolicited advice - that you experience (rightly, I think) as intrusive? There is nothing incompatible about knowing both that your mom and family and friends love and support you, and that some of their ways of showing it just miss the mark for you. Keeping this distinction in mind may also help you to be explicit in letting them know what works best for you, in case you haven't communicated that clearly yet. (Ok, I guess there is some actionable advice here after all.)
Having said all that, I'm sorry to hear about the diagnosis, though I'm glad to see that you're taking it in stride. Wishing you a full recovery, whatever that needs to look like for you.
posted by obliterati at 2:51 PM on April 25, 2023 [2 favorites]
I just need help managing my reaction to others' reactions,
I just want to highlight the significance of this comment, because this is something I struggle with (especially lately), and it's so important to realize that you can only manage and control so much. Like what often feels like a tiny amount of stuff in a SEA of stuff.
It may have been brought up before in here but I want to note that you can always change your mind and/or change your preferred mode of interactions as you move through this. Obviously, you cannot change how other people react or respond, but try not to let the people-pleasing part of you feel like you are casting in stone forever that you don't want or need some of these things now and can never want or need any of these things in the future. Boundaries are not punishments and adjusting boundaries should not be punishable.
posted by sm1tten at 2:57 PM on April 25, 2023 [2 favorites]
I just want to highlight the significance of this comment, because this is something I struggle with (especially lately), and it's so important to realize that you can only manage and control so much. Like what often feels like a tiny amount of stuff in a SEA of stuff.
It may have been brought up before in here but I want to note that you can always change your mind and/or change your preferred mode of interactions as you move through this. Obviously, you cannot change how other people react or respond, but try not to let the people-pleasing part of you feel like you are casting in stone forever that you don't want or need some of these things now and can never want or need any of these things in the future. Boundaries are not punishments and adjusting boundaries should not be punishable.
posted by sm1tten at 2:57 PM on April 25, 2023 [2 favorites]
the mama bear instinct is a very, very real thing. That’s what’s happening to your mom - she literally wants to tear down, with her claws and teeth, everything that threatens her bear cub. I don’t say this to mean you should be pressured to let her interfere, but maybe it’s helpful for you to understand how very strong this instinct can be. I always feel like understanding is half the battle!
posted by haptic_avenger at 2:58 PM on April 25, 2023
posted by haptic_avenger at 2:58 PM on April 25, 2023
I am really sorry you are going through this. I wanted to respond to this part, because it's something I've experienced and continue to work through and maybe although my anecdote is different, something is useful?
My mom, however, immediately asked to FaceTime right there and then (when I needed to be alone to process), asked a lot of personal medical questions, asked to see the doctor's notes, said she would want to be there for my surgery, and just kind of seemed really on it. I know it seems cold/weird of me, but I honestly felt smothered by her questions, reactions, and I felt she was jumping ahead way too fast (when it wasn't even official). She has a tendency sometimes to treat me like a child (overprotective, probably because I'm Deaf).
I have a very weird and complicated relationship with my mother, which changed a lot after we cared for my father as he died (everybody got covid, it was just me and her, it was a ride).
Years ago, before that, I had a bunch of miscarriages, the first of which was a set of twins. She wanted to immediately drive to be by my side, she was hysterical, the intensity of her emotions was overwhelming. I told her under no uncertain terms that she was not to drive to where I lived.
I was upset, feeling my way through--people don't talk about miscarriages much so you're really surprised when your first pregnancy results in one--and I felt like she was a vampire.
She didn't care that I didn't *want* her with me. She didn't seem to have any awareness that my needs might be different than hers, or take priority in that instance. She seemed to feel that her feelings about it were far more important about mine. When I had a child, years later, she was specifically not invited to the hospital until the second day, because her presence felt so..undermining? She got to see her grandkid and then got sent directly home. I still get shivers when I think of the notion of her staying to 'help' me figure out how to take care of a baby. I can't believe I'm not *more* neurotic, in retrospect.
Smothering, undermining, disempowering--took ages to untangle some of this.
I might never untangle all of it but what I *have* tried to do is set boundaries. If I'm driving her someplace and the traffic is heavy, and even if I'm relaxed and confidant about it, she gets this weird tone telling me 'it's okay, you're doing okay' as if I wasn't doing okay. Last time I said, 'Listen, when you talk to me like that, it makes me feel like I should be having a panic attack and driving into a bridge when I'm actually handling everything just fine and this is no big deal*' and maybe being dead blunt isn't your thing, but I tell you, it's exhilarating to say what's true for you rather than seething inwardly, and doubly important when you're sick.
(*Spoiler alert: I mean, she was calming herself down by trying to calm me down, even though I didn't need to be calmed down, because she's afraid to drive in urban traffic. But if I'm the person doing the driving, my rights count first. With the miscarriage, she was superimposing a lot of her history and fears on to me.)
So I'd offer: maybe take a dive with your therapist about the undersurface of it and how you can disarm her without open conflict but remaining truthful about your feelings.
For me, it felt/feels like she is literally drawing strength from me when she does this kind of thing -- and I am so much better now about saying 'actually, I'm handling it just fine but don't particularly want to talk about it. Are your daffodils up?' or when she brings up my ex-husband: 'Yeah, thanks, not feeling like reliving that right now' or that I have this skin condition that's driving me nuts 'Thanks! I'd almost forgotten I had that so it's great you brought it up! ' (And I know that last sounds and is passive aggressive but it makes her laugh and honestly, that's nice and is often the outcome some of my shitty responses, or responses I previously would have considered unthinkable.)
Anyway: If she makes you feel weak or afraid you can frame comments back like 'I appreciate the offer but I actually feel more confident about this facing it on my own, like a grown up.' And you can change your mind, let her know. And you can say 'Hey, I promise to update you with anything major but having cancer isn't all I want to focus on, in fact, I'd rather not. It's emotionally exhausting and I have a therapist and a great doctor, so can we keep discussion about it to when I am open to talking about it and talk about X instead?"
Most importantly: you're doing a hard thing. It takes strength and stamina and forbearance and patience. It's a lot of emotional labor. You have every right to fight for interactions that support rather than deplete you. And I would fling myself out of multiple windows before I ever let my mother sit in on a doctor's appointment with me. If that helps at all.
posted by A Terrible Llama at 3:59 PM on April 25, 2023 [6 favorites]
My mom, however, immediately asked to FaceTime right there and then (when I needed to be alone to process), asked a lot of personal medical questions, asked to see the doctor's notes, said she would want to be there for my surgery, and just kind of seemed really on it. I know it seems cold/weird of me, but I honestly felt smothered by her questions, reactions, and I felt she was jumping ahead way too fast (when it wasn't even official). She has a tendency sometimes to treat me like a child (overprotective, probably because I'm Deaf).
I have a very weird and complicated relationship with my mother, which changed a lot after we cared for my father as he died (everybody got covid, it was just me and her, it was a ride).
Years ago, before that, I had a bunch of miscarriages, the first of which was a set of twins. She wanted to immediately drive to be by my side, she was hysterical, the intensity of her emotions was overwhelming. I told her under no uncertain terms that she was not to drive to where I lived.
I was upset, feeling my way through--people don't talk about miscarriages much so you're really surprised when your first pregnancy results in one--and I felt like she was a vampire.
She didn't care that I didn't *want* her with me. She didn't seem to have any awareness that my needs might be different than hers, or take priority in that instance. She seemed to feel that her feelings about it were far more important about mine. When I had a child, years later, she was specifically not invited to the hospital until the second day, because her presence felt so..undermining? She got to see her grandkid and then got sent directly home. I still get shivers when I think of the notion of her staying to 'help' me figure out how to take care of a baby. I can't believe I'm not *more* neurotic, in retrospect.
Smothering, undermining, disempowering--took ages to untangle some of this.
I might never untangle all of it but what I *have* tried to do is set boundaries. If I'm driving her someplace and the traffic is heavy, and even if I'm relaxed and confidant about it, she gets this weird tone telling me 'it's okay, you're doing okay' as if I wasn't doing okay. Last time I said, 'Listen, when you talk to me like that, it makes me feel like I should be having a panic attack and driving into a bridge when I'm actually handling everything just fine and this is no big deal*' and maybe being dead blunt isn't your thing, but I tell you, it's exhilarating to say what's true for you rather than seething inwardly, and doubly important when you're sick.
(*Spoiler alert: I mean, she was calming herself down by trying to calm me down, even though I didn't need to be calmed down, because she's afraid to drive in urban traffic. But if I'm the person doing the driving, my rights count first. With the miscarriage, she was superimposing a lot of her history and fears on to me.)
So I'd offer: maybe take a dive with your therapist about the undersurface of it and how you can disarm her without open conflict but remaining truthful about your feelings.
For me, it felt/feels like she is literally drawing strength from me when she does this kind of thing -- and I am so much better now about saying 'actually, I'm handling it just fine but don't particularly want to talk about it. Are your daffodils up?' or when she brings up my ex-husband: 'Yeah, thanks, not feeling like reliving that right now' or that I have this skin condition that's driving me nuts 'Thanks! I'd almost forgotten I had that so it's great you brought it up! ' (And I know that last sounds and is passive aggressive but it makes her laugh and honestly, that's nice and is often the outcome some of my shitty responses, or responses I previously would have considered unthinkable.)
Anyway: If she makes you feel weak or afraid you can frame comments back like 'I appreciate the offer but I actually feel more confident about this facing it on my own, like a grown up.' And you can change your mind, let her know. And you can say 'Hey, I promise to update you with anything major but having cancer isn't all I want to focus on, in fact, I'd rather not. It's emotionally exhausting and I have a therapist and a great doctor, so can we keep discussion about it to when I am open to talking about it and talk about X instead?"
Most importantly: you're doing a hard thing. It takes strength and stamina and forbearance and patience. It's a lot of emotional labor. You have every right to fight for interactions that support rather than deplete you. And I would fling myself out of multiple windows before I ever let my mother sit in on a doctor's appointment with me. If that helps at all.
posted by A Terrible Llama at 3:59 PM on April 25, 2023 [6 favorites]
Oh I should add this; it's an important point.
I like her a lot more now. It's easier. And I feel like she knows me, sees me, in a way she didn't before.
We are different people, with different needs. Letting that fact have a bit of space to breathe is super comforting.
posted by A Terrible Llama at 4:56 PM on April 25, 2023 [2 favorites]
I like her a lot more now. It's easier. And I feel like she knows me, sees me, in a way she didn't before.
We are different people, with different needs. Letting that fact have a bit of space to breathe is super comforting.
posted by A Terrible Llama at 4:56 PM on April 25, 2023 [2 favorites]
I had a close family member also dx’ed with colon cancer, and I was probably the overbearing family member in the early days—looking back, this was me trying to manage my own terror and grief and sadness at seeing someone i love so much suffer. This person though was not shy about setting boundaries, and it pissed me off initially but then I got it, backed off, and the relationship improved. (This was also not a complicated relationship, in as much as a close family relationship cannot be complicated).
So—was I pissed off and hurt and lots of other things when this family member told us all to back off? Yes. But I survived, got my own supports, and learned how to give my family member what they needed. But it took time and we all gave each other a lot of room, did a lot of crying in private, forgave every harsh word, and took space when we needed it. It did seem like an impossible feat in those early days though.
As my close family member loved to tell me, “I am the one with cancer.” As in, this is hard for you, but it’s harder for me and I get to decide what I want. Ultimately I’m grateful he made decisions with only himself in mind and his wishes, and I’m grateful he made those crystal clear. You are the one with cancer. You get to decide what you need from people, you get to set boundaries, you get to ignore people. It might piss off and hurt people at first, but that’s okay. Solid relationships truly based in love for you can and should withstand these shakes to the foundation.
My best to you.
posted by namemeansgazelle at 5:34 PM on April 25, 2023 [3 favorites]
So—was I pissed off and hurt and lots of other things when this family member told us all to back off? Yes. But I survived, got my own supports, and learned how to give my family member what they needed. But it took time and we all gave each other a lot of room, did a lot of crying in private, forgave every harsh word, and took space when we needed it. It did seem like an impossible feat in those early days though.
As my close family member loved to tell me, “I am the one with cancer.” As in, this is hard for you, but it’s harder for me and I get to decide what I want. Ultimately I’m grateful he made decisions with only himself in mind and his wishes, and I’m grateful he made those crystal clear. You are the one with cancer. You get to decide what you need from people, you get to set boundaries, you get to ignore people. It might piss off and hurt people at first, but that’s okay. Solid relationships truly based in love for you can and should withstand these shakes to the foundation.
My best to you.
posted by namemeansgazelle at 5:34 PM on April 25, 2023 [3 favorites]
You can't manage how other people react, you can only gatekeep yourself so that you don't have to deal with them.
Your mother's diving right in and being concerned is wonderful! Except that somehow it takes the focus off you and puts it on her. She needs to be informed. She needs to be in control. She needs to be supportive.... Not wonderful at all. You may not want to play the role of the person being helped - how ungrateful! - or the person explaining everything - but she can help you if she only understands what is going on - or the the passive person. If you don't want to pass control over to her, or accept her support, or let her be knowledgeable about your situation, that's your right. Giving HER control takes control away from you. You don't want to be being grateful. You didn't ASK her to take over.
The hardest part of cancer is managing the feelings; having to manage other people's feelings can be way too much. Your own feelings are going to take a heck of a lot of managing. But it is possible to both accept that the people who are making you feel crappy are both loving and caring for you, and that you are better off shutting them out more. The hard part, of course, is actually setting boundaries when their behaviour is making regulating your own emotions harder.
It might be good to get some scripts or make some guidelines. "I don't want to talk about this. It will upset me to talk about this. I want to change the subject." And if the person you say this to replies that they will be upset if you don't talk about it. "I am the cancer patient and my needs come first right now. I am not going to upset myself by talking about this."
People who send you bad advice and talk in platitudes do want to help. And like the three year old who tries to paint the back bedroom with the dark green paint you were trying to put on the porch railings, you can love them, appreciate their intentions and love for you, and at the same time feel no guilt at all for being annoyed and taking steps so that you don't have to cope with their type of "help".
Realistically dividing your friends and family into those who make you feel better, those who might be helpful if you communicate with them clearly, those who would be useless, and those who will make you feel worse and be a burden on you, is a good plan. A bad plan is spending any time and effort trying to move people into different categories.
People will likely want to help. You can give them ways to help AND tell them what won't help. "I am too tired to want company, but I would be grateful if people would volunteer to drive me to appointments." You can send them a short message that your hand are really full now, and while you don't forget that they are your friends(family) and that they matter to you, they can expect you to be too preoccupied to interact with them. "I've had a lot of e-mails - thank you all so much for the support. I wish I had the strength and time to reply to all of you in person. I will get in touch with you when I can." Copy-Paste-Send.
I wish you the best of luck, that it turns out to be still stage two, and that your next few weeks and months and years are not more than you can quickly figure out how to handle, and that you get lots of love and support and good times.
posted by Jane the Brown at 6:26 PM on April 25, 2023 [1 favorite]
Your mother's diving right in and being concerned is wonderful! Except that somehow it takes the focus off you and puts it on her. She needs to be informed. She needs to be in control. She needs to be supportive.... Not wonderful at all. You may not want to play the role of the person being helped - how ungrateful! - or the person explaining everything - but she can help you if she only understands what is going on - or the the passive person. If you don't want to pass control over to her, or accept her support, or let her be knowledgeable about your situation, that's your right. Giving HER control takes control away from you. You don't want to be being grateful. You didn't ASK her to take over.
The hardest part of cancer is managing the feelings; having to manage other people's feelings can be way too much. Your own feelings are going to take a heck of a lot of managing. But it is possible to both accept that the people who are making you feel crappy are both loving and caring for you, and that you are better off shutting them out more. The hard part, of course, is actually setting boundaries when their behaviour is making regulating your own emotions harder.
It might be good to get some scripts or make some guidelines. "I don't want to talk about this. It will upset me to talk about this. I want to change the subject." And if the person you say this to replies that they will be upset if you don't talk about it. "I am the cancer patient and my needs come first right now. I am not going to upset myself by talking about this."
People who send you bad advice and talk in platitudes do want to help. And like the three year old who tries to paint the back bedroom with the dark green paint you were trying to put on the porch railings, you can love them, appreciate their intentions and love for you, and at the same time feel no guilt at all for being annoyed and taking steps so that you don't have to cope with their type of "help".
Realistically dividing your friends and family into those who make you feel better, those who might be helpful if you communicate with them clearly, those who would be useless, and those who will make you feel worse and be a burden on you, is a good plan. A bad plan is spending any time and effort trying to move people into different categories.
People will likely want to help. You can give them ways to help AND tell them what won't help. "I am too tired to want company, but I would be grateful if people would volunteer to drive me to appointments." You can send them a short message that your hand are really full now, and while you don't forget that they are your friends(family) and that they matter to you, they can expect you to be too preoccupied to interact with them. "I've had a lot of e-mails - thank you all so much for the support. I wish I had the strength and time to reply to all of you in person. I will get in touch with you when I can." Copy-Paste-Send.
I wish you the best of luck, that it turns out to be still stage two, and that your next few weeks and months and years are not more than you can quickly figure out how to handle, and that you get lots of love and support and good times.
posted by Jane the Brown at 6:26 PM on April 25, 2023 [1 favorite]
Oh, DD, I’m so sorry to hear this. There’s a lot of good advice in here so I’ll skip adding anything, but I had colon cancer in 2017 (stage 1b, so obviously less dramatic) and now I have found out I have an unrelated, incurable cancer. If you would like a mefi buddy to talk to or any ideas from some similar experiences, I am more than happy to talk. It’s really easy for people to toss off a “let me know if you need anything,” which is something I hate because it puts the onus of work on the sick person, but I really would be happy to talk and if there’s anything I can help with, do that. I know the roil of emotions and how anxious and off kilter it leaves you, with or without an overbearing mom. Your feelings are yours, and they are legitimate because they’re yours.
posted by kitten kaboodle at 7:16 PM on April 25, 2023 [5 favorites]
posted by kitten kaboodle at 7:16 PM on April 25, 2023 [5 favorites]
I meant to say this in my long-winded answer as well, because I think you need to hear it: it is okay to lie to your mother in order to control your situation and avoid the reactions you don't want to have to manage.
YOU get to decide how much information you share with her going forward, and you can omit what you don't think is necessary for her to know at any given time, and if necessary you can modify information you think you should partially provide but there are certain details and timelines you don't need her to know.
And that's a normal part of being an adult. Your mama doesn't need to know everything about your life anymore, just like you aren't entitled to know everything about hers just because you're grown now. Most of us edit, some of us heavily, and some families like mine have crafted it into a fine art.
Obviously this applies to everyone else too - your boss, your friends, casual acquaintances. Everyone is only entitled to the information you curate for them. You should be as honest as possible (as far as what is relevant to the situation) with your doctors/care team, and with your second-in-command whoever that ends up being, and nobody else is owed anything but what you feel is right to divulge.
posted by Lyn Never at 8:32 AM on April 26, 2023
YOU get to decide how much information you share with her going forward, and you can omit what you don't think is necessary for her to know at any given time, and if necessary you can modify information you think you should partially provide but there are certain details and timelines you don't need her to know.
And that's a normal part of being an adult. Your mama doesn't need to know everything about your life anymore, just like you aren't entitled to know everything about hers just because you're grown now. Most of us edit, some of us heavily, and some families like mine have crafted it into a fine art.
Obviously this applies to everyone else too - your boss, your friends, casual acquaintances. Everyone is only entitled to the information you curate for them. You should be as honest as possible (as far as what is relevant to the situation) with your doctors/care team, and with your second-in-command whoever that ends up being, and nobody else is owed anything but what you feel is right to divulge.
posted by Lyn Never at 8:32 AM on April 26, 2023
Oh dubious_dude, I'm sorry about your diagnosis.
Could you use Facebook or email to communicate to your circle something like "I appreciate everyone's love and support. Right now I am taking in the news, working with my doctors, and trying to get my head around a treatment plan."
And then maybe consider a platform you could use for sharing updates, as this might be help solve some of the issues.
Someone I know was diagnosed with stage 3 breast cancer last year. She has been using Instagram to document her journey, which I think would be helpful in a number of ways. Being able to communicate to everyone at once, maybe being in control of what you share or don't share (it might stop random questions), being an outlet. She has also used Facebook for call outs for help when she needs it.
I'm not saying you have to use Instagram, but consider whether some kind of platform would be helpful for you.
I'll be thinking of you. Sending you strength
posted by kinddieserzeit at 3:17 PM on April 27, 2023
Could you use Facebook or email to communicate to your circle something like "I appreciate everyone's love and support. Right now I am taking in the news, working with my doctors, and trying to get my head around a treatment plan."
And then maybe consider a platform you could use for sharing updates, as this might be help solve some of the issues.
Someone I know was diagnosed with stage 3 breast cancer last year. She has been using Instagram to document her journey, which I think would be helpful in a number of ways. Being able to communicate to everyone at once, maybe being in control of what you share or don't share (it might stop random questions), being an outlet. She has also used Facebook for call outs for help when she needs it.
I'm not saying you have to use Instagram, but consider whether some kind of platform would be helpful for you.
I'll be thinking of you. Sending you strength
posted by kinddieserzeit at 3:17 PM on April 27, 2023
Response by poster: Thank you for all of your positive words. My response here will be brief, because I'm focusing right now on getting all my ducks in a row, but the scripts and suggestions has been valuable and very helpful. Thanks for validating what I was feeling, I really appreciate it. I also appreciate the kind words, both here and on DM. It's a lot to process, but I got this.
posted by dubious_dude at 9:51 AM on April 28, 2023 [3 favorites]
posted by dubious_dude at 9:51 AM on April 28, 2023 [3 favorites]
I'm so sorry to hear that you're going through this, and that your mother's response has caused stress for you. And I agree, put mom on an information diet. But I also do want to echo that you should let one or more of your friends, people you trust, act as a medical scribe for you. And I think that's especially important because you're Deaf, and presumably most of your medical team won't be, and they may not understand all the things that you're going to need to make sure your disability doesn't interfere with your care. Not just interpreters--and I'm sure you know, some hospitals and providers suck and try to get away with not providing you the full scope of interpreting that you're entitled to by law--but assistance you may need if you're hospitalized, at home, negotiating with insurance companies that often expect to communicate by phone, etc. I hope you're able to find people in your life you can trust to support you and help you advocate for yourself in those ways as you go through this.
posted by decathecting at 4:43 PM on April 29, 2023
posted by decathecting at 4:43 PM on April 29, 2023
The post above reminded me - medical scribe is a job that many pre-meds do for clinical experience in a gap year in between college and medical school. There are scribe staffing firms. Many medical practices employ them for their physicians - I've had appointments with them present. Scribes will have gone through training and will observe HIPAA rules. What I'm getting to is - I wonder if your docs would lend you a scribe for your appointments, in addition or replacement for interpreter. Worth a shot?
posted by Dashy at 6:17 PM on April 29, 2023
posted by Dashy at 6:17 PM on April 29, 2023
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posted by cadge at 10:45 AM on April 25, 2023 [3 favorites]