VENT!---Thinking before speaking...

Sonata

VENT!---Thinking before speaking...

Sonata

While I've been going through treatment, I've noticed people saying things like "Well, you look good" or "Must not have been as bad as you imagined it would be". I am SO sick of it! These are mainly comments coming from people who see me 1 time a week (at church) and usually on the weeks in-between treatments (I go once every 3 weeks). So what do they expect me to be like? I'm young...did they expect me to take to my bed and waste the entire 5 months just laying there?

Another 'problem' I'm having is everyone always asking me how I'm doing. I mean, come on, I'm going through chemo, how do you think I'm doing? And I never really know how to answer them. Do they want the honest, medical answer?---something like, "well the diarrhea is better today but the fatigue is kicking my @ss". Or do they want the generic "I'm fine"? I have difficulty just saying I'm fine because that isn't the case at all. People act like just because I'm able to remain a member of society and leave my house to do normal every day things like pick up things at the grocery store that chemo must be a cake-walk. The fatigue I feel every single day is overwhelming. I sometimes have to lay my head down on my desk (at home) because I'm overcome by weakness...and yes, I've fallen asleep just like that. But people don't see that when I'm out in public. Other times, I feel dizzy or a wave of nausea will hit me out of left field. But I don't mention it....all that will do is make someone wonder "well then why aren't you at home?".

I just can't win. So what do YOU do? :? I want to be honest with those around me, especially the ones I know that care enough to ask. But I'm not sure what to say. I don't want to be judged for my choices on whether to stay home or go out. I just want people to understand what being on this roller coaster called chemo is like---that we have to take it one day at a time. Things may not always be what they seem. Being in public doesn't mean I feel wonderful, but being at home doesn't mean I feel bad. *Sigh*

Thanks for letting me vent. I appreciate any responses you may have.

Mantra

I have said; emotionally I'm a wreck and physically I feel like crap but I'll spare you the details .But thanking you for asking and caring.

kirismum

I love Mantra's response and I thank you for writing this, Joy. It's my daughter, not myself, that is suffeirng from bc, and she had her second chemo treatment today. I have to admit I have wondered myself how to ask her how she is doing, and how to convey to others how she's managing (I have about 30 people on my round-robin email list I try to keep informed) when I know damn well it's not a walk in the park.

 I called her tonight and she sounds woozy and tired. I feel so bad for her. :-(( The things I want to say--you'll feel better in a couple of days, you'll be able to ride your horse by Sunday--seem so hollow and even inappropriate. What I really want to do is just give her a hug and take away the pain and misery, but she is 300 miles away, and even if I were there I would be as helpless as I am now. So I just told her I hoped she would be able to sleep well, that I loved her and would call her again in a day or two.

 We are all in such foregin territory with this. So often there are really no words that express the things we want to say--about our fear, our anger, our desperate wish to make things different, our awful sense of impotence. I so deeply appreicate any advice from those on the front lines, battling this horrible disease, to those of us who only stand on the near perimeter, wanting somehow to share the burden and take away some of the pain, but not knowing the best way to do it. And truly afraid that our efforts might just make things worse.

Laurie08

I can relate on  a different leval, I have been so lucky to avoid chemo.  I had a BMX and have expanders in, and everyone looks at my chest and says wow, you look fantastic.  I still have my exchange/ nipple surgery left...I think about my chest and what I see in the mirror and I say thank you and nod.  If I've had a glass of wine and am feeling bitchy I say I have one more surgery and soon I'll have nipples again.  It shuts peoople up about how lucky I am to have new boobs.  I say that you express your mood, don't hide the crap unless you feel like it, show it if you need to.  After all- they asked right?

AmyIsStrong

Sometimes I said "It's rough but I am trying to be brave." I felt like that conveyed that things might not be what they seem (i.e. that just because I'm in public, I'm doing fine). But to be fair, I have to say this - until you go through this stuff, you just have NO IDEA what is involved and what it is like.  Many years ago, I had an across the street neighbor who was going through bc.  I remember when she had a recurrance, she was going to get a BLM and the surgery where they take the fat from your abdomen and reconstruct from it. (Sorry don't know the technical term.) I remember saying something about her 'free tummy tuck', which I have read on this board since is the WORST thing to say. I feel TERRIBLE about it, but at the time I had no idea.  So I think that people do their best but are just lucky enough to be clueless - just like I used to be!

Kirismum - one thing I think you could do is just be honest "I love you so much and am afraid of saying the wrong thing. Do you want to talk about this, talk about something else, or not talk at all? Any of those is fine, I just want to support you the best I can."  I can't imagine anyone being put off by that approach.  Please keep us posted on Kiri's progress. She has collected quite a few cheerleaders among our group, I think (and of course we are cheering for you, too, as you support her).

deadlanguages

Um, honestly? It doesn't bother me. I'm fairly unflappable and I figure these people are just trying to be nice in whatever way is best for them. They care and don't know wuite how to show it. And sometimes the awkward things people have come up with have seriously made me laugh, like good hard belly laughs. Once someone said she thought I was "so brave" and that got me slightly annoyed. I set her straight, told her that bravery is a choice and nobody chooses cancer. But other than that? No, I can't say this kind of thing bothers me.

lago

I understand your frustration but it would be worse if they didn't ask at all or said you looked like shit. They do have the best intentions and everyone takes to these questions and statements differently.

My onc told me Tuesday just before tx2 I look great. And you know what… she's right. I look fantastic except for the hair loss. The steroids fill my face out nicely. ;-) I don't look sick.

People don't know what this is all about. Chemo used to be much worse years ago. That's why people are expecting you to look like crap. 

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How are you doing?
Just say fine. They are really just asking because they care. Granted I do give some of my friends the details when the ask but they are close friends. Try not to go into too much detail with certain things other than saying "metamucil is my new best friend" ;-)

kittymama

This is an illuminating thread!  I have a diagnosis from a core biopsy, but am still going through additional testing and haven't had surgery yet. 

Mantra is spot-on.  I'm an emotional wreck, but since I haven't had surgery or treatment yet, physically I feel fine.

I do get tired of people asking how I'm doing.  Although, like Lago says, it would be worse if they didn't ask at all.  

However, instead of the concerned emails and phone calls, which are emotionally draining to return, that during treatment, people would send me things I'll need like snacks and supportable pillows, videos, comfy pajamas etc....Just a shout out!  Hope I didn't offend anyone.

Wonderland

This is an issue all of us have faced during chemo. I usually said, "I'm doing the best I can." The details would have gross them out.

You will be called "brave" and you will be called "strong." Someone on this Board has translated what that really means: "Your life sucks and I'm glad I'm not you." This is hilarious!

The first time someone says to you, "You're SO strong!" remember what it really means and try not to laugh in their face!

Good luck with the rest of your chemo.

*Edited to insert word

hymil

Joy-belle: "Thank you for asking: I'm fine and now i'm also a good liar, shall we meet for coffee Tuesday afternoon and i'll bring the kleenex and tell you the truth?" (gives them the option to say er no im not after the truth really, specific time allows them to say Yes if they are up for more or to offer a different time if it suits them better) Very hard when it's from sisters in the church, most of them genuinely do mean well in their own way, and you should be able to ask for the support you deserve. Church i was in when postnatal illness struck, they saw me once and decided i was fine, er no actually i was just allowed out of the locked unit under escort for the day that time, and still on tablets three months later, but to the amateur I looked fine, end of story, no help whatsoever was forthcoming. I realised then that it doesn't pay to look too good, if you're paddling like crazy underwater then say so.

Laurie I can really relate to yours too,  (maybe try, "Sure i look good (well good enough) with my clothes on, my special effects guy worked on Star-wars") I get so worked up about the fooby sometimes and have thought of having a teeshirt printed with "Saving up to have the other side done". Well my local supermarket (Adsa Walmart) has a men's pyjama set going at the moment i couldnt resist: it reads <Perfect Body under Construction> i'm going to take it to the gym and see how my confidence builds from there...

mamie65

Joy-belle, you probably look a lot better than you feel, which is why people say you look good. They mostly care. There are incredibly helpful types, and then just the opposite. Move on and away the hurtful, to protect yourself. Those people don't get it, and perhaps never will. The answer people want to hear is 'fine". Going into medical detail causes eyes to glaze over. Doesn't mean we have to be dishonest, but if we can, let's turn it into a 'teachable' , moment for the insensitive. humur

Pompeed

Most of the time I would say in my most polite voice: "I appreciate your concern but I'd rather not talk about my situation."  

People would indicate their concern and offer any assistance I might need and that was that.  They felt better for showing concern and offering to help and I felt better not discussing things I didn't want to discuss.  

I didn't have to lie and say I was well or better when I wasn't and I didn't have to listen to advice and annecdotal stories about their third cousin once removed and how she managed her breast cancer when I really was not in the mood.

hymil

My new solutions - ignore the content of the question while registering that an attempt has been made, and make a counter-conversation-starter myself. eg. Oh Hallo Joyce, Lovely to see you, how is your son's basketball team doing? Or if they insist on questions about my health, stunned silence, uh, Can i have an easier question please? or, I'll pass on that one for now, so who made these delicious brownies? I had to go this route of proactive deflection because the current situation is hopefully ok regards BC but very much not ok in other important areas and that's not something I want to discuss on every street corner. They mean well most of them, so I hold to that and try and find a practical outlet for the care. Yeah hi Joyce, Great to see you again, do you know anyone in Reykjavik my DD and her bf could go stay with for three weeks? I don't think I will lose too many real friends this way, but will probably shed a few rubberneckers!

hymil

PS Love your teachable moments, mamie! anyone that insists on more medical details from now can start by learning to spell Lymphoedema!

lrr4993

I think people expect a lot worse than what turns out to be the reality.  I did not tell many people about my diagnsis for this very reason . . . I did not want to be bothered with this sort of thing, no matter how well-intended the inquiries are.