Lets do a Sh*t People say to Metastatic BC Patients
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Mazy and BHD1 -
I am really astounded by the lack of basic understanding of breast cancer. Especially since now a days, it seems that everyone knows someone who's had it, or had a family member that's had it, or at the very least a friend of a friend who's had it.
I do believe that a lot of this ignorance of Stage IV in particular comes from the pink messaging. We are breast cancer's dirty little secret.
Sheesh!
LL0 -
I don't think people realize that you have breast tissue/muscle/skin left after a mastectomy so they just assume or are misinformed that once you have a mastectomy you get rid of all of the cancer when you have the surgery. I thought the same thing until I found these boards and have been reading everyone's story and garnering the information from bco that and talking with my aunt who had breast cancer 20+ years ago and learning that she still has breast tissue with her implants and she is having green discharge and numerous lumps throughout her breasts that it can still occur because there are cells left. I don't know but I thought I would throw this out here....
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I tend to agree, Liz.
People believe the pink message, which is happy and positive, and those of us with MBC fall outside the rules. I think people don't even see us as having the same disease. We don't fit their idea of BC so they don't know how to handle us.
Frankly I prefer people to see me as outside the pink party. It ain't going to be a happy ending for me, and if people can accept that and accept me, it allows me to get on with living how I want.
Cheers,
Angela0 -
Liz thats so very true. If they could cure us they could cure everyone else. But I agree...we are a dirty little secret. HUgs, Mazy
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From a massage therapist "friend" while giving me a complimentary trial reflexology treatment:
"in many holistic medicine pathways, breast cancers are linked with relational female conflicts".
Of course not all breast cancers are the same. Some are linked to unforgiveness. Or self hate.0 -
Learnin -
Oh no. No no no no no she/he didn't. In addition to being just beyond insulting, the scariest thing may be that these people really believe this kind of thing! That, to me, is truly frightening.
So sorry this happened to you.
LL
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Ok - I've got a new one today folks. I have a friend who has had a sore lower back for quite some time. A week ago, she looked at me and said "What if it's cancer, like YOUR cancer?" I looked at her, and forgive me, I rolled my eyes just a touch, and said, "Um, it's not cancer. You're fine."
Fast forward to this week. We are emailing back and forth, and in an attempt to shift focus away from me me me me me me, I asked her how her back was, and how her doc appt. went. She said, "Oh, it was horrible. He said I needed back surgery!" (Which, btw, I said he would say, being an orthopedic doc). I told her I was sorry to hear that, and she said that she was going for a second opinion, and was hoping shots, or PT or something else could help her instead. So, I said, I think it's great you're going to look at all your options.
She says...wait for it..."Yeah, you and I will get through all this together!"
Um - no, no "we" won't. You have a sore back. I have terminal cancer in mine.
I know this woman has a good heart, which is why I don't take her head off. She honestly has no idea how this sounds. And this is why I rant about it here.
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It does amaze me when people equate their minor health problems with ours. I am not saying that theirs has no value and that it should be discounted. But a sore back is NOT the same as terminal cancer and for crying out loud, how come these folks cannot understand that? Do they think they will get attention? I got news for them - the attention you get from this disease is not the kind anybody would want.
Do they not understand that this leads to death? It's just amazing sometimes.
My brother has not spoken to me since I was diagnosed, three years ago now. I used to have his kids every summer but not since then. I dont' know what is going on and I no longer care, except I miss the kids. But I wonder - when I die, will he be sad? Will he cry? He's my little brother - does he not give a crap?
Well, all I can do is nothing. I am trying to figure out a way I can keep those who have not cried with me to keep from crying over my coffin. Why should be kids be subjected to that? Only people who have been there for me should be at my funeral/memorial - but then, I don't know how you keep people away - and certainly not after you are dead!
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Oh - I haven't spoken to my mother in years (not as punishment, it's more self-protection and protection of my son), and every one of my good friends, and my husband know she is not, under any circumstances, allowed anywhere near my funeral or my son. I believe these people will carry out my wish if she tries to so much as step one toe anywhere near it. Not that I expect her to, but you never know with her...she's a complete drama queen and pathological liar, and given the chance would use my funeral as the perfect stage to play the role of the "bereaved mother". She knows about my cancer through my Aunt, and hasn't even lifted a finger to call my Aunt (or me) to see if I'm still breathing. Great mom, there! So I figured I better make my wishes known on that immediately!
I am so sorry that your brother has shut you out at this point. I'm sure the kids are missing you too. I don't know what's wrong with people. Really, I don't.
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I've had the same idea Ann. I absolutely hate how people who were no where to be seen when the person was alive show up and act all broken hearted at their funeral. I want a private service, if any at all. Family only. There is no one here for me now and I'll be damned if they are going to cry over my casket and act like they gave a shit.
So I just got back from the hospital, got my port. One of the preop nurses was asking me all the usual medical issue questions and I told her just click no on them all. Other than this cancer crap I'm perfectly healthy. She says "Well after your mast and chemo, you wont have to worry about this cancer crap anymore either!" Blah.
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learnin...that is horrible. Im so sorry she said that to you. Hugs, MAzy
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Liz...I have no idea why people think their illnesses etc can compare to stage 4 cancer but it really annoys me.
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Cool...He couldve at least wrote you a letter explaining his actions. I would be crushed if that happened to me. Unfortunately my brother passed away 7 mo before my initial diagnosis. HUgs, Mazy
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Stormy...it takes all kinds...geesh how ignorant can a nurse be?
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Ohhhhhh if it were only that simple, a masectomy and we'd all be fine.
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My brother write me a note? That makes me laugh. In June I was right by his house (about 80 miles away) at a wedding. I wanted to stop by and had told him the date at a family gathering a few months ago so he said, let's do it. I fooled him and texted rather than called. I told him where I was and asked if I could come over or visit for a bit as we had discussed. He said traffic was too bad (there was no traffic). Then he said that one of the kids was sleeping and he had to run an errand. (This was about 1:00 pm.)
Okay, I get it.
He won't write a letter because he doesn't understand himself what he's doing.
He just does NOT get to cry over my casket.
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After dreading seeing extended family on the Thanksgiving and getting the dreaded "so how is your health" I ended up being honest, I got
"Well it is like they are saying, it is kinda like A cronic condition", I replied "well, not everyone is as lucky as I am".
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A friend asked me today about my thanksgiving. I told her it sucked - had planned to go to family's for the day, but because of stupid cancer / port infection complications, DH and I ended up sitting in an e.r. 2 hour roundtrip from home for 4 hours while DD sat at home waiting for us to return. By the time I returned, I was too wiped out to do anything but go home and sleep. We had pizza rolls for supper and I made Monkey Bread (one of my DD's favorites) to try to make it up to her. My friend said, "Oh well, there's always next year". Uh-huh. Hmmm. Is there a next year? What do I respond to that?
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Oh, Surfdreams, I am so sorry that you had to go through all that on Thanksgiving, and then have our friend top it off with a comment like that. How insensitive.
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Fitz I luv your answer.
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I had to add my DH's remark to me the day after Thanksgiving. To preface, we have 5 grown children with spouses and children. It is hard to get us all together at once so we ended up with a revolving door all day. The first of the kids came in around 10:00 a.m. and the last set left around 8:00 p.m. I should also mention that I had my first chemo in a year and a half on Tuesday with Neupogen on Wednesday so I am not feeling my best. Anyway, the day after Thanksgiving, my DH said Thanksgiving was too much trouble so when I am gone he is going to eat alone at Golden Corral.
I was diagnosed with metastatic disease on November 7. Is he seriously planning what he is going to do when I am gone?!?
I keep telling myself that he is struggling with all of this just as I am but WTH?!0 -
Surfdreams I'm really sorry you had such a bad Thanksgiving and had to hear such an insensitive remark.
I hope you are feeling better! 0 -
SamayoFL - WTH is right!!! I'm sure you worked your tail off to provide a nice holiday for everyone - not what you needed at anytime, but even more so since you're so recently diagnosed and just had a treatment! So sorry!
Thanks CoolBreeze - weekly chemo has been halted since the 9th due to a nasty cellulitis infection around my port. Can't wait to start chemo back - it was keeping me stable. Will find out tomorrow if the port will need to come out.
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I hope your port stays in and they can keep you going. If you have to take antibiotics - you know my advice. probiotics!!!!
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Hi there to all. This is my first reply since I have just joined this forum. I am young , early thirties and currently diagnosed with stage 4, mets to liver , lungs , spine etc.. Because of the attitudes of people I have chosen not to disclose my condition to anyone except my parents, brother and brand new husband.. My parents and brother have been amazing which is more than I can say for the husband.( Know each other for 14 months... Married for 6 months)... Live with my parents for last 5 months in another state to receive treatemnet etc) Need your help and experience for that, just don't know how to start a new topic .. Sadly though one of the challenges of not disclosing your condition is you don't get any understanding in being unable to attend social functions or dinners etc... Cancer doesn't work around diaries .. I have severe fatigue and lie in bed for most of the day.surely lots of gossip about me ... Speculation makes people nastyt...sure I will hear of some great stories soon to share... Otherwise any feedback will be apprecaied...ps... Have a nasty suspicion , I may have brain mets too... Over the last few weeks, severe pressure in my head, with nausea and vomiting... Eyes incredibily sensitive to light as well... Having said all of this I wish u all the best in this unforseen journey we all have to endure
.... Strength to each of us ...0 -
Sleeping,
Yes. You should start a new topic so that everyone comes to know you. From this page, select "Stage IV and Met... Forum" from the breadcrumb. Then at the top of the page, about 2 inches down is "14, 390 Topics" and a big button that says "Start a New Topic." When you have your new topic started, I will properly welcome you to Club Mets.
Be well,
*susan*
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Oh one more thing, my husband and i found out about the diagnosis in july ... Since the marriage he is living in my apartment ( expense free) in state A. Now with the increased frequency of treatment and hospitilisation in state B I have asked him to move ... He has said NO... He can't work there..and that I have financially ruined him beacuase of the wedding...PS my parents pay for everything in terms of treatment etc including the mortgage on my house. He had not helped me look for a place to stay or anything! I have come up to stateA with my parents to pack up my stuff and put this house on the market and have been sick . He says its my fault because I am missing chemo ( oh gosh hence the reason I am asking him to move) !! His buisness is everything to him and I can't help but wonder that he is struggling beacause of his cold heartedness with respect to my cancer. Around my parents he is so caring asking if I need anything to eat or meds... Maybe I am being too emotional ? And not trying to understand it from his perspective ?
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Thank you susan. I will do that now... Sleeping beauty... Hugs
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Sorry to hear that sleeping beauty...
SAMayoFL- i am not sure as i don't know your husband but maybe its his way of coping... i cant even mention after i am gone with my DH cuz he wigs out! That still is a bit insensitive! Me i am the joking type where i have to put humor into everything in order to deal, but it would bother my husband where i cant do it around him. ex- when i was 1st dx'd i would say to someone asking me to do something for them like grab them a coke or something "oh i can't do that cuz of my cancer" even though i'd get up and do it anyways. maybe thats what he was trying??????
FITZ: hows the video coming along (unless i missed your post of it)
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Sleeping-beauty... I'm truly sorry that you're going through this. Please do introduce yourself in a new post!! Like you, I haven't shared my Stage IV diagnosis with many people, and I understand the pressures of being in the cancer closet! These women have been a lifeline... I know that they will welcome you with open arms...
Rose.
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