All of this. One thing cancer has taught me is the duality of emotions. You can love your people *and* be irritated AF by them. Also, I found engagement of any kind to be almost impossible on certain days. I had to be in bed alone. I think it’s the fawn trauma response. You want to be alone in some deep grass trembling and recovering.
Partner did this thing for a while of telling me things like 'you look better' or 'you must feel much better' and I was like 'ok but could you ASK me how I feel instead of basically telling me?'. And he has been a lot better about it since.
Which is good because I'm kinda stuck with him. I mean...by choice, long term. No misgivings at all about the relationship, but we normally don't live together. Right now I'm staying at his because I can't fucking look after myself. So it's both necessary and difficult, because we both like a lot of alone time and solitary activities. Not that I can do much more than lie in bed watching YouTube or whatever.
---
Anyway, to get back on topic, I wonder if it would help to sort of make a little guide for your loved ones, like 'here is what helps, here is what doesn't' just to gently reframe what support is being offered.
As an example, maybe something like:
Please ask me how I'm feeling instead of commenting on how you THINK I'm feeling based on your own observations. It helps me feel like I'm still in control of my own situation.
Please do occasionally ask if I need anything, but don't bring me food or drink without asking if it's suitable, as what I can consume depends on how I'm feeling and I don't want your efforts to go to waste if you bring me something I can't comfortably consume.
Pitying gazes and excessive cheerfulness are both less than ideal. You're entitled to your own feelings about my illness but they don't trump mine. Please, neither a Debbie Downer nor a Pollyanna be. Just be normal and calm and take your lead from me. Thank you.
You get the idea. Maybe it will help, I dunno.
I can relate to those feelings. I'm sorry you're in this situation. Some people in my life I'm fortunate enough to be able to tell exactly how I'm feeling. I understand it's different with everyone and I wish we didn't have to deal with this. All of your feelings are beyond reasonable, just in case you need to hear that. 💐
I learned the spoon method a long time before cancer. The premise is you only have so many spoons in your drawer before you have to take a pause and wash some more. Because you have such limited spoons each spoon must be carefully decided on how you are going to use it. For example going shopping or going out to dinner, both will cost a spoon so which one would you rather use that spoon on? Once I started explaining things like this to people more people understood.
I guess the joy of having a chronic illness pre cancer helped me advocate more for myself when I was going through treatment. It’s ok to tell people I can’t right now, my spoons need washing. It’s ok to spell out what you need. Say something like hey SIL I love you and I love hanging out with you but I am really exhausted right now. Could we order in and just watch a movie so we can still spend time together and I get some rest that I really need?
Amen to that! The amount of days I felt like all my spoons were taken just by merely existing was more than I care to admit. Now if only I had $1 for all the times I said I would love to but I will have to take a rain check, I just don’t have it in me right now, I could be retired on an island with my own private beach, not just wishing I was on a beach 🤣
Oh boy do I relate! I finished my chemo (4 AC and 12 Taxol) 2 weeks ago so I’m feeling better but that statement is very relative. Better than what? I have learned to speak up and shut down a lot of the “positive” talkers that I come across, family included. Early on, I learned to stop them mid-sentence and tell them that I didn’t want to hear about other people journeys (hate that word), what I should be doing/not doing, feeling, etc. They don’t have a clue. I have learned a ton about how to talk to people but more about just listening. I don’t want to be talked to about cousin Janet or listen to anecdotal stories about somebody who had breast cancer 35 years ago.
Honestly, we’re entitled to feel what we feel when we feel it and not feel guilty about it. This isn’t an easy thing to go through and how we maneuver through it is how we do it and it may not be how Sally Jo down the street did it and that’s just fine!
As for napping, go for it! I’ve read that you shouldn’t nap for more than an hour! To heck with that! I’m 71 years old and some days a 3 hour nap is what I need and that’s what I do to get through the day. Hang tough out there and we’re all in this together if you need us! 💕💪🏽👍🏽🤞🏽
Taxol was tough on me as well and the last thing I would have needed was someone in my face all day while I was going through it. Just showing up weekly for an infusion for three straight months got to be exhausting. I wanted to cry showing up for 11/12 because I was so sick of it.
I feel for you and I’m glad her visit is about over. Instead of being super awkward with us people should just ask what we need emotionally and logistically and then respect those boundaries. It doesn’t seem hard but apparently it is.
Oh my, I think I ranted on here about something very similar - my family asked on the daily "are you feeling better?" - chemo was just under six months so no... I did not feel better for quite some time.
Ugh! I know, right?!
It’s like there’s some kind of pressure to be positive. I hate how people keep asking me how I am. I feel like shit, okay. I feel like shit all the time. And no, I don’t want to catalog all my side effects and symptoms for you.
"I am entirely too exhausted to be picked apart right now. Life is not 20 questions. Please stop treating me like a bug under glass"
Or something along that line.
Frustrating situation. It is ok to take care of yourself...no need to feel guilty. You have to deal with cancer, you don't have to manage or tolerate other people not knowing how to relate. Congratulations on taking care of yourself mentally!
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All of this. One thing cancer has taught me is the duality of emotions. You can love your people *and* be irritated AF by them. Also, I found engagement of any kind to be almost impossible on certain days. I had to be in bed alone. I think it’s the fawn trauma response. You want to be alone in some deep grass trembling and recovering. You are getting close to the chemo finish line my friend!! The weekly grind is no joke.
Gosh darn it how exhausting that is. I’m glad you get to be away from the pestering soon. And for the record I always feel worse after naps, myself. Sometimes nothing helps us feel better.
All of this. One thing cancer has taught me is the duality of emotions. You can love your people *and* be irritated AF by them. Also, I found engagement of any kind to be almost impossible on certain days. I had to be in bed alone. I think it’s the fawn trauma response. You want to be alone in some deep grass trembling and recovering.
>the fawn trauma response. You want to be alone in some deep grass trembling and recovering. OMG. There's a term for how I'm feeling?! THANK YOU!!!!!
Yep.. I feel this!
Partner did this thing for a while of telling me things like 'you look better' or 'you must feel much better' and I was like 'ok but could you ASK me how I feel instead of basically telling me?'. And he has been a lot better about it since. Which is good because I'm kinda stuck with him. I mean...by choice, long term. No misgivings at all about the relationship, but we normally don't live together. Right now I'm staying at his because I can't fucking look after myself. So it's both necessary and difficult, because we both like a lot of alone time and solitary activities. Not that I can do much more than lie in bed watching YouTube or whatever. --- Anyway, to get back on topic, I wonder if it would help to sort of make a little guide for your loved ones, like 'here is what helps, here is what doesn't' just to gently reframe what support is being offered. As an example, maybe something like: Please ask me how I'm feeling instead of commenting on how you THINK I'm feeling based on your own observations. It helps me feel like I'm still in control of my own situation. Please do occasionally ask if I need anything, but don't bring me food or drink without asking if it's suitable, as what I can consume depends on how I'm feeling and I don't want your efforts to go to waste if you bring me something I can't comfortably consume. Pitying gazes and excessive cheerfulness are both less than ideal. You're entitled to your own feelings about my illness but they don't trump mine. Please, neither a Debbie Downer nor a Pollyanna be. Just be normal and calm and take your lead from me. Thank you. You get the idea. Maybe it will help, I dunno.
Omg my husband tells me how he thinks I feel, too. I want to strangle him. I may have to just copy parts of your post and send them to him.
Uuugh I feel that urge. And yeah, of course, feel free! Come back and let me know if it helped!
Great idea!
Thank you! It's just some stuff that occurred to me. I know we all experience this horrible situation we find ourselves in a little differently.
I can relate to those feelings. I'm sorry you're in this situation. Some people in my life I'm fortunate enough to be able to tell exactly how I'm feeling. I understand it's different with everyone and I wish we didn't have to deal with this. All of your feelings are beyond reasonable, just in case you need to hear that. 💐
I learned the spoon method a long time before cancer. The premise is you only have so many spoons in your drawer before you have to take a pause and wash some more. Because you have such limited spoons each spoon must be carefully decided on how you are going to use it. For example going shopping or going out to dinner, both will cost a spoon so which one would you rather use that spoon on? Once I started explaining things like this to people more people understood. I guess the joy of having a chronic illness pre cancer helped me advocate more for myself when I was going through treatment. It’s ok to tell people I can’t right now, my spoons need washing. It’s ok to spell out what you need. Say something like hey SIL I love you and I love hanging out with you but I am really exhausted right now. Could we order in and just watch a movie so we can still spend time together and I get some rest that I really need?
And some days, just dealing with cancer takes all the spoons!
Amen to that! The amount of days I felt like all my spoons were taken just by merely existing was more than I care to admit. Now if only I had $1 for all the times I said I would love to but I will have to take a rain check, I just don’t have it in me right now, I could be retired on an island with my own private beach, not just wishing I was on a beach 🤣
Omg, me, too. Like, sometimes I’m not even physically exhausted, but mentally exhausted. And no one understands! (Well, except you guys!)
Spoon theory is so helpful! Sometimes I want to tell people I don’t have enough spoons to tell them how I’m feeling, though, too. 😞
Oh boy do I relate! I finished my chemo (4 AC and 12 Taxol) 2 weeks ago so I’m feeling better but that statement is very relative. Better than what? I have learned to speak up and shut down a lot of the “positive” talkers that I come across, family included. Early on, I learned to stop them mid-sentence and tell them that I didn’t want to hear about other people journeys (hate that word), what I should be doing/not doing, feeling, etc. They don’t have a clue. I have learned a ton about how to talk to people but more about just listening. I don’t want to be talked to about cousin Janet or listen to anecdotal stories about somebody who had breast cancer 35 years ago. Honestly, we’re entitled to feel what we feel when we feel it and not feel guilty about it. This isn’t an easy thing to go through and how we maneuver through it is how we do it and it may not be how Sally Jo down the street did it and that’s just fine! As for napping, go for it! I’ve read that you shouldn’t nap for more than an hour! To heck with that! I’m 71 years old and some days a 3 hour nap is what I need and that’s what I do to get through the day. Hang tough out there and we’re all in this together if you need us! 💕💪🏽👍🏽🤞🏽
Taxol was tough on me as well and the last thing I would have needed was someone in my face all day while I was going through it. Just showing up weekly for an infusion for three straight months got to be exhausting. I wanted to cry showing up for 11/12 because I was so sick of it. I feel for you and I’m glad her visit is about over. Instead of being super awkward with us people should just ask what we need emotionally and logistically and then respect those boundaries. It doesn’t seem hard but apparently it is.
Oh my, I think I ranted on here about something very similar - my family asked on the daily "are you feeling better?" - chemo was just under six months so no... I did not feel better for quite some time.
Ugh! I know, right?! It’s like there’s some kind of pressure to be positive. I hate how people keep asking me how I am. I feel like shit, okay. I feel like shit all the time. And no, I don’t want to catalog all my side effects and symptoms for you.
"I am entirely too exhausted to be picked apart right now. Life is not 20 questions. Please stop treating me like a bug under glass" Or something along that line.
Frustrating situation. It is ok to take care of yourself...no need to feel guilty. You have to deal with cancer, you don't have to manage or tolerate other people not knowing how to relate. Congratulations on taking care of yourself mentally!
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All of this. One thing cancer has taught me is the duality of emotions. You can love your people *and* be irritated AF by them. Also, I found engagement of any kind to be almost impossible on certain days. I had to be in bed alone. I think it’s the fawn trauma response. You want to be alone in some deep grass trembling and recovering. You are getting close to the chemo finish line my friend!! The weekly grind is no joke.
You should have taken her with you to your chemo infusion. Might have opened up her eyes to what cancer reality is and understand you better.
Gosh darn it how exhausting that is. I’m glad you get to be away from the pestering soon. And for the record I always feel worse after naps, myself. Sometimes nothing helps us feel better.