Lets do a Sh*t People say to Metastatic BC Patients
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Shetlandpony, that was a good reply. I love it.
Nice of u, I haven't received a pm. If be skeptical about doing that.
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Thanks all for the suggestions. I’ve never been to a psych before but thought I could use some help dealing with some of the feelings with the diagnosis. I’ll keep looking
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I feel like there should maybe be a separate Stage IV mental health thread. Right now I'd like some tips in managing anxiety that I think is being driven by lack of trust in my treatment path and team. I know it means take control and sort it out, but I'd like to hear from others about having that treatment confidence goes a long way towards managing the mental side of this situation. Or a place where the new ladies can come be reassured that its ok to freak out and cry a LOT. Or when progression happens.
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Sondra, that's a good idea. I scheduled an appointment with a consular who treats cancer patients. I am struggling with anxiety also. I'm hoping she can help.
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Sondra, I think that is a very good idea! Want to start it? "Stage 4 blues, anxiety and freaking out"
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Or just “Stage IV Mental Health". Even if a person is not currently feeling a crisis, I think ongoing attention to our mental health as people living with cancer is really important. So I think it is a good idea to start a mental health thread for us, Sondra. Some of our circumstances and needs are unique to stage iv.
FYI A related thread is “Tips for fighting the dark clouds".
https://community.breastcancer.org/forum/8/topics/833863?page=1
Also related but not on the stage iv only forum is the thread called “Anxiety" Started by a BCO member who is a therapist.
https://community.breastcancer.org/forum/83/topics/855477?page=3#post_5010574
(Note that this one is in the Not Diagnosed But Worried forum, so it might be better to have a different thread for stage iv to address our unique needs and also to not freak out the others.)
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lehrski, I'm SO sorry. I really hope this person is kicking themselves for that comment. Wow, just wow!
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Moth, I also wa t to extend my thanks for resurrecting this thread. The comments are stunning but, as others have said, we've all experienced a number of them.
In the medical professional category, a pharmacist at the Cancer Agency was running through the details of an oral chemo with me. When she got to the question of alcohol consumption she advised that alcohol was okay, paused the. Said but there is evidence that alcohol consumption increases your risk of developing cancer. I responded saying “Well, that ship has sailed!"
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I went to a new derm (mine retired) to get a pre- cancerous lesion cryo re-treated. she told me "you have bigger fish to fry"
Hello??
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When the pulmonologist called me to tell me that the fluid in my lung came back positive for BC (after pooh poohing that this could be an option after so many years cancer free) he indicated that my oncologist would want to put me on chemotherapy. I indicated I thought he would likely order CT scans first... he said "why"? Um... because it makes a difference where it has spread to... Seriously?
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I must say I like this thread, first few pages were exactly what people around me have said.... oh
I think I'm gonna read all posts while I am in waiting room for injections next week. Good read.
I had a couple of sessions with a shrink, from the first she started with “I can understand how is difficult you are at terminal stage, I am here to help you and your family" can't tell you how much she discouraged me, so I quit.
a very old friend (a very few people knew about my mbc) called me few months ago, as usual for everyone, asked about treatment and cancer, like it is my new identity, I briefly (because I don't go in details for no one) said a progression showing in mri, and then I couldn't control myself and cried, she replied “if you wanna cry I won't call you again" !!!! and continued “I can't even live one second of your life"
My sister question:" how many pills you take daily"
My answer: “ cancer meds 2 pain killer many"
She: “ only 2!!! oh I thought your disease is serious" “ I take one, and the other is optional, so we both take 2 then"
Me speechless 😶....
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I' beat- it- what?!! where is their empathy gym?
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I have some of my med costs partly covered by the drug manufacturer and they emailed me today to ask how much longer I'd be requiring them.
Hello? It's metastatic. Is "till I die" clear enough for you? And no, sorry, I don't have an exact date for that.
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I hope that is the answer you sent them, moth.
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Hi, it is interesting thread...it happens to me all the time. I look really healthy, excercise a lot, have a lot of energy...so people are so surprised why I am still on medicaments. Even my mother in law said to my husband that...She is totaly healthy...I had progression at that time (did not knwing it). But the “funniest” thing was when the insurance company, where I already have insurance started bomb me with new better insurance program...they called me about 5 times and I told them I am sorry but you really would not want new life insurance for me...I am stage four BC...they did not understand and called again and again....I think that even many stage 1-3 patients inour patient organizaton dont know or dont want to know what means metastatic BC.
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I wonder sometimes if I said "metastatic". No one hears that word, even some health care workers. Clearly Puketober should start educating the public on MBC like they did decades ago for BC.
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So true. No one really knows how to respond to the M word. I like the way the subject changes really quickly after I tell any medical professional that part. /s
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OMG! I got the nice shaped head comment the other day.!!!
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I've been diagnosed Stage 4 since the beginning in 2008. Still on chemo and meds.I think people stopped waiting for me to die. I've heard it all.
"We're glad you can be with you again this year." This stopped after year 2.
"When will you be done with chemo?" By different people several times a year.
"You look great!" I'm 12 years older and look it, gained weight, but I color my hair.
"Lets do this,that or the other." I barely have enough energy to leave the apartment or have visitors.
This is a great thread. It's always good to vent. If I remember more, I'll post.
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This resulting from travel to visit family over Christmas (who'd a thunk they might get exposed to Covid?) "My husband & I have had mild covid symptoms for 2 weeks, but we're good now and can FINALLY get out." Wow, 2 weeks without going out to visit friends! Can't believe they've just now gotten covid. Sometimes I lay the truth out in graphic terms. Partly for education as they are blissfully clueless.
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Got this one recently: "Let me know when you're in remission". Um, well, huh. Don't hold your breath.
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"Here's a great book that you must read." (Foods to Fight Cancer) or "It's a mindset and a good attitude will heal you." (Cancer Conqueror). Instead, please tell me about your latest good historical fiction or beach read, something I might get pleasure from.
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Was just told by a friend that my cancer is caused by a root canal I had in 1999 and old fillings (due to mercury). Thanks so much, unsolicited cancer info.
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aprilgirl- What on Earth are people thinking?! SMH
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ohh there are some “alt medicine" believers who are convinced that dental work hascaused all kinds of harm. Have seen them on forums various times over the years.
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Well, aprilgirl, your friend is glad to know why you got bc because it means she/he is safe because she/he did not have such dental work done.
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Shetland Pony, this friend was recently dx with triple positive bc and is in chemo (already had surgery). She is having all her old fillings removed and replaced by a special dentist that must be promoting this theory. She does have a lot of $$$ so at least she has the excess funds to do this but I don't think this is the reason she has cancer (or I have cancer).
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Oh dear, I'm sorry to hear she also has a bc diagnosis. I think my point is still true. She feels more in control believing she knows what caused it. I assume she is having the fillings replaced because she believes it will protect her from recurrence.
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I had a "friend" who told me God gave me cancer
my MO said it wasn't true
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My neighbour just told me that I shouldn't have used anti-perspirant, that's what caused my BC. Gawd, I had no idea. I will forgive her as she is in her 80's.
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