Lets do a Sh*t People say to Metastatic BC Patients
Comments
-
Well, Coolbreeze, think of it this way...you have a quarter of a million readers, but only one of them was a complete and total idiot! That's pretty impressive. :-)
0 -
Ann,
Ditto on what Angela said! People are so petty, so exceedingly petty sometimes, that it just makes my blood boil. In no way, shape or form did you deserve that bs comment. You have and do go out of your way, every single day, through your blog, through these posts, and I'm sure in many other ways that we don't even know about to help other women with breast cancer. My god - you have touched a QUARTER OF A MILLION women at least! And all of this while you are dealing with your own physical and emotional issues, triumphs and set backs. I could never do what you do.
I have such admiration and respect for you. I am so grateful for your tremendous contributions - and I think the interviews are a BIG deal, (and you should be damn proud of them!) because in that way, you also have the opportunity to educate the population at large about what breast cancer, and particularly what MBC really is (and is not).
I hope you have a good day today - a really good solid day knowing how many people look to you as a source of inspiration and hope.
Hugs,
LL0 -
Wow, thank you ladies. Such wonderful words, I deeply appreciate them.
I was not upset at what that person said personally, by the way, but in the spirit of "stupid things people say to cancer patients" I thought that belonged. It was like "Dance, fool, dance" no matter who sick you may be, no matter what else might be going on. I don't know if that person would say something like that to a family member who was going through it: "Gee, mom, you know, you used to make me dinner every night but now you seem to be slacking off and I'm not sure I like you anymore....." maybe they would. I certainly have people in my family who only think of themselves so I get it.
0 -
Yup...I think something like this really shows you who a person is...whether they are in your family, or someone you thought was a friend. And...it's not all bad, I think some people that you'd never expect to do so, step up in ways you'd never imagine. It's just interesting to see what happens when the chips are really down.
I haven't spoken to my mother in years because she's a really toxic person. She has heard via the family grapevine of my dx. She has not made one attempt to contact anyone who I do speak with in the family to even find out if I'm alive or dead. I have no need or desire to speak with her, but it's just the point. So, yes, I do believe there are awful people out there who are all about themselves, and would treat one of their own no better.
0 -
A friend of mine hosts a radio show, with another lady, they have a segment they call "How very dare you!" Callers ring up and tell a story where someone said something stupid, or rude, and then everyone chimes in and states "How very dare you" It is usually said in a bit of fun, but I think all of these stupid comments deserve a huge "HOW VERY DARE YOU"
Dawn
0 -
dawny, I absolutely love that.....
0 -
Me too! That's great!
0 -
Perhaps I should ask if they will air a "what not to say" segment, we have plenty of comments here! Lol
Dawn0 -
Here's one I will just never get over - My insensitive EX "boyfriend" of 14 years - (yep, BC did it for me -finally told him I'm done with his crap-Just don't have time in my life for it - it's been a year without him and it's such a relief), once said to me, "Well, we all have to die from something".
0 -
Sherry,
Wow. Just wow. Good for you that you had the strength to walk away! 14 yrs. is a long time...
LL0 -
I know this sounds mean to say, but I just cannot bear one more person telling me "You did it before, you can do it again" - Like surviving is a choice - I know they mean that going through treatment is a choice, but it still bugs me. I always want to tell them that the chemo did not "do it" before and that is why I have mets - mets that are not responding to current chemo. My cancer is "very aggressive and resistant to treatment", according to med profs. I had an "incomplete response" to chemo last year, so here I am at stage IV. I know I am reading negative thoughts into what people are saying to me, but I do not like feeling that I have any choice in surviving or not. How do they know if I can "do it" or not? My PNP begged me to continue treatment yesterday - she even had tears in her eyes. What if I do not want to "do it"? What will those people say then....(I have agreed to do carbo-gem separately instead of together -that way the infusions will be shorter and awful blood counts may rebound -one Fri. 75% carbo, the next Fri. 75% gemzar - then, thank God, a Friday off. Then we start the cycle over. I feel that it most likely will not be an aggressive enough treatment, but I can do an hour each of the Fridays to keep everyone off my back. At least that way, they will not say, "Oh darn, she should have stuck with it".)
Sherry
0 -
Sherry, I'm so sorry you have to deal with this.
Only you can possibly know how you are travelling with treatment, and only you can decide what you will and won't subject your body to.
Easier said than done.
When people say "you can do it again", I interpret that to mean that I can deal with any treatment, put up with all the pain and accept the de-feminization of my once-lovely body, and keep smiling like the soldier I am. People want to believe it will have a happy ending. I understand that, and my guess is that this wish is at the root of many of the stupid things people say to Stage 4 girls (ok not all...some comments are just bizarre!)
But that doesn't give them the right to dictate what you do to your body. Sometimes we all need to cut ourselves some slack, be kind to ourselves, make the choices we want to make for our selves, and occasionally tell well meaning people to butt out!
Again...easier said than done.
Cheers,
Angela0 -
Reality, sorry to hear of your troubles.....so wish there was something I could say or do to help....praying for you....
0 -
Oh, you have been down this road so many times, we know if anyone can pull thru it, you can!
xxoo
melissa
0 -
Thanks to all for responses and for caring. Forgot to mention this one...my PNP, in her desparate and caring attempt to convince me to continue treatment, told me yesterday, that whether I stop chemo or not, I will never have a day when I really feel good. OMG! I know she was in a panic about me wanting to quit chemo, but did I really need to hear that I will "never" have a day when I really feel good? I guess I know in my heart that I won't, but hearing it from a med prof really made it hit home....
0 -
.....sorry - while I'm on my rant....the same PNP told me that there are lots of chemo drugs that work for BC and that I should keep trying them. So far, four have not worked for me. She is also the person who told me that TN BC responds well to chemo - really? Maybe for some people, but has she looked at my chart lately.
Ok -I'm done for now. I am going on-line to buy myself a portable washer. I am not going to the laundry mat all winter. I live in a lovely mountain cabin, but have no washer or dryer - I will have one in a couple of days, darn it. Since my mets dx., I feel I have been depriving myself of things I need as I feel I will not be around long to use them - but my thinking is quickly changing - I am going to make my life as easy as possible while I am here.
You are all in my thoughts -
Sherry
0 -
Thanks, Melissa - too funny!
0 -
Lizlemon - yep- Wow. I just read an article that popped up on BC.org homepage about recent research concerning second hand smoke and BC - it really reinforced my choice to end my 14 year relationship. I know it was my choice to be with a smoker for 14 years and I wish I had not made that choice. I continuously asked my ex to smoke outside his home - he refused. (He was not allowed to smoke in my home or car, so he NEVER came to my house and never rode in my car - his choice).
0 -
What do you do when both your Mom and Dad were chain smokers for your entire life? I just don't know if I can mentally credit them for both my life and death.
0 -
Ummmmmm ... actually Hulda Clark helped a crapload of people ... I know several of them personally. Just because it sounds wacky, go read up on any of the conventional drugs and they are just as wacky but way less toxic. I am a big fan of integrative treatment. Killing everything is not necessarily the right answer for all of us. I have done mostly natural tx for my mets, only using the big guns when deadly force was necessary. I have outlived my expiration date by 4 years at this point. So yeah, there are some wacky sounding things out there, but it doesn't mean they have no credibility at all. Just because your onc doesn't know about it doesn't make it worthless.
xxoo
Melissa
0 -
I'm all for going the alt, natural or whatever way you like, but come on.. the woman said.. "All cancers are alike. They are all caused by a parasite. A single parasite! It is the human intestinal fluke. And if you kill this parasite, the cancer stops immediately. The tissue becomes normal again. In order to get cancer, you must have this parasite." This is nowhere even close to truth by any stretch of the imagination.
She also died from cancer. Obviously her cancer treatment didn't work.
0 -
SPAMgirl - I know what you mean - I remember how badly my throat burned when I would ride in the car with my mom. She would be smoking away with all the windows rolled up. Unfortunately, both of my ex-husbands smoked and so did most of the guys I dated - I just group them all together and blame darn cigarettes (and myself for being with the stupid guys).
0 -
Spamgirl - also, our parents did not know the dangers of second-hand smoke, so I do not blame my mom. But the idiot I was recently with for 14 years was very aware of the dangers and just did not care. Before I dumped him, he asked me why I no longer brought my grandchildren over to visit him. I told him it was because he was selfish and inconsiderate as he used to go outside to smoke when they were at his home, but with time even started smoking with them in the house!
0 -
I have one...
I was newly diagnosed stage IV, and in a state of shock and despair. I took my husband's FMLA paperwork to the Doctor's office and tearfully told the lady at the desk my situation.
She asked, "How long will your husband be needing FMLA?"
I'm normally very tolerant about what people say to me, because I understand it can be so hard to know what to say. I'm even afraid to say the wrong thing to other people with cancer.
But this was just dumb
Hugs,
Rachael
0 -
No protocol works the same for every person. Just because she was unable to cure her disease doesn't mean her methods didn't work for others. The info is out there online ... just requires a little research. But most people, when they read something they consider wacko, will not pursue past the first wacko impression they get. And I would never glom on to a protocol like this as my only method of fighting. But I have slept many a night wearing a zapper. No, it didn't change anything for me, but then things don't work for me like they do most people anyway, so that wasn't a huge surprise. Energy work has made a huge difference but that is something else that most people find wacko and ridiculous. But it is the only alt thing that has really made a dent in things for me. Go figure, huh?
xxoo
Melissa
0 -
My cancer ctr has a bench outside the front door and I can't tell you how many times I have had to walk past people smoking sitting on that bench. Like come ON people ... this is a CANCER center for heaven's sake! Like we don't have enough to deal with besides battling their addictive crap? All that being said, I was born/raised in NC, so I smoked most of my life ... until about 2 years after a cancer dx. So I get the addiction thing ... but at least walk your lazy butt to where us sick folk don't have to walk right through your smoke cloud to get in the door of our dr office.
xxoo
Melissa
0 -
Hi Rachael.
Looks like you are a new one here. I have only joined the stage 4 girls recently too.
Your comment about the Doc's Receptionist just made me roll my eyes. Classic insensitivity, but I guess we have to accept most people just won't "get it".
I hope you've read the earlier posts on this board. Truly hilarious.
Best wishes
Angela0 -
Liz LOL..Does he reealize that the life ins co have to have a death certificte with cause of death? LOLOL. It will read that u had cancer and in Illinois it states when the cancer was diagnosed. Gotta luv these intelligent people LOLOL
0 -
Sister in law asked me yest. Why don't I just get a mastectomy?
0 -
bhd, it amazes me how many people believe that a masectomy cures breast cancer. I cant count how many times I've been asked that. Hugs, Mazy
0
