Lets do a Sh*t People say to Metastatic BC Patients
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Hmmm...these comments triggered some interesting memories. When I was first diagnosed with mets and making plans to start chemo, I saw my dental hygienist for a cleaning. As I was tilted back in the chair, mouth wide open, instruments stuck in my mouth, she started telling me the details of how her mother had died of Stage IV disease and how horrible the dying process was for her mother and for the rest of the family to witness, crying as she did so. At first I was so shocked I could hardly respond, and I did not challenge what she was doing as I normally would. Should I have started at her lack of professionalism? Her lack of empathy for my situation and my vulnerability? Her fixation on her own story? Ah, so many choices. If I remember correctly, I redirected the conversation just to get myself grounded again, but later I was filled with regret over not challenging her response to me. Fortunately, I remembered that I just did the best I could in a tough situation and I let go of being critical of myself.
I also had an acquaintance, employed as a hospice RN, tell me right after she heard of my mets diagnosis, "Well, don't worry about your end of life care; we'll make sure that you get all the pain meds you need and die in comfort!" As if that was the primary care option and the main concern that I was facing at the time....
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Oh dear...I wish I saw this back then.... update.
I never restarted that chemo. This hematologist threatened to discharge me if I stayed a patient of my other onc. So I quit the other onc and signed up for another one...I was put on a different regimine for a different type if bc....I fell fractured my sacrum, lost ten pounds...and most of my symptoms have come back plus...
No good onc wants to treat me and the ones that do want to treat me for the old cancer, not the one that was from the biopsy....
Further, I see I was just going into remission back then...now they all tell me the best they csn do is keep me stable and they can't reverse anything...
I ended up in the hospital with severe weight loss and dehydration....
I'm beimg blamed for this whole mess.... I've been left a basket case by earlier treatment and no supportive treatment during this phase for months....all to stay a patient of this doc I described above...
Other docs were willing to take me as a patient until I fell...now I am soo ill and messed up and dependent, and scared, I don't know what to do....
The cuts to medicare haven't helped and because of my weak state and lack of support, I just can't get myself too far without completely falling apart.
I take into account what the current oncs say, but when I look at the quality of my life now and six months ago and how frail I have bevome and how they've all clanned together to make it impossibke to get me stronger and healthy....I just don't know anymore....
I am very frightened...
Thank you....
Thus man was having a bad day...I had to make a terrible choice...and I have tried to replace him him, but there is no one more skilled in my condition than him...
Without the good onc part, though, I have a tough problem...
I can't get around weighing less than a hundred pounds....
Thank you spam girl...though...
Has time passed that quickly?0 -
I bought a new bed today and was telling my girlfriend about it, because I am excited. She asked a few questions about it, and then asked me how long the warranty was. I told her it was only 10 years on the model I chose, and there was a more expensive model that had a 15 year warranty. And she replied that she guessed it doesn't matter because I won't be around to use the ten year warranty anyway!
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My Latte, How very kind of her!! Can you imagine saying that to someone in our position? I have sort of a weird sense of humor and to a couple friends who understand me I might make a comment like that BUT it would be referring to myself, never THEM!! I guess she means to be funny. But it is not.
Anywy, enjoy the nice new bed.
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Thanks Judie! I actually did make the same comment to the salesman in the shop, but as you said there is a huge difference between what we say about ourselves and what others should feel comfortable saying about us.
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Oy vey! With friends like these...
Caryn0 -
My dd's fil told me again today that if I just follow a no carb diet and eat lots of meat (fatty or lean!) that my cancer cells will all starve and I'll be cured. He doesn't understand body language at all apparently, because I turned away from him and he just kept talking...😡
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I went to the hairdresser last week and took daughter along with me to get her a trim too.
Her stylist asked her if she had anything exciting planned for the coming weekend and daughter said she didn't but then excitedly told her that she was going to our capital city to see P!NK in concert next month.
My operator piped up with the fact that she is flying to Sydney in Sept to attend P!NKs concert.
I had just offered the fact that my eldest son and his wife were in Brisbane the night before for one of our country's biggest football games of the year when my h'dresser piped up that she had been there too, in a corporate box no less!
It seemed to be one of those days when it was best to keep ones mouth shut.....musing on it later, I wondered if I had told her that I had stage IV bc, would she have trumped me by saying, "Oooh.....I had that...........and it killed me last week!"
Sheila.
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I rarely read this post so I've been catching up on the last few pages. I mortified that I am probably one of the "bone mets only" offenders. I'm truly sorry and should have known better. My only excuse is fear and grasping. :-(
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HLB, I felt the same way when I read that. I even went back and read a bunch of my old posts to see if I could find anything stupid that I probably posted. I hope if I was one of the "bone mets only" offenders, anyone who read it will know I didn't mean to be an idiot, and I am sorry.
So, this doesn't just apply to stage iv, but to anyone who's done chemo. I was called sir..3 fricking times today. The guy in the Arby's drive- up window, he kinda gets a pass. I was in a car with a baseball cap on, I can see how he could easily make that mistake with just a glance at me.
But, the receptionist at the cancer center and the nurse who was talking to her do not! They should know better. Very short hair and a ball cap do not = male! Especially in a damn cancer center! The nurse gave me a shot and Iv fluids every week for 3 months! I go there every day for rads. I didn't think I looked all that bad til this happened. I miss my hair and boob so badly today.
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The nurse and receptionist absolutely do not get a pass. After my hip replacement I had to walk with a cane, and I'm sure I didn't look my best anyway. My older (stress on older) sister came to help out. The radiation tech asked if I wanted to have my daughter (!) come to the waiting room with me! Then a server in a restaurant where I go very frequently asked if my daughter (!!!) was still here visiting. These people should all know better.
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Ha well I can't help but get a little laugh out of that one (sorry) because that has happened to me many times on the phone due to my voice haha. I've had a deep voice ever since I was a little kid and I usually just ignore it but this guy said sir 3 times and I got flustered with what I was trying to say so I finally said "its not sir"! And without any change in his tone at all he said "I'm sorry maam".
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I would have been irritated with the cancer center people too. I'm pretty much always an upbeat person but I tend to be irritable in general at the drs office over any little trivial thing that I'm not satisfied with! I think its because I live sort of in denial as if everything is ok because right now it is, and having to go there is like a reminder of how serious it actually is.
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"Bone mets only" can be painful as hell (as mine were). I'm not sure we are the lucky ones. But I'll remove my signature in case it offends anyone.
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I'm not offended by bone mets only (no need to change the signature). I have had the experience of a bone mets person saying that people with cancer to the soft tissue don't last long, and another bone mets person, when she learned mine was to the liver, shook her head mournfully and said "Oh, I am so sorry."
I chalk it up to ignorance.
Sad that any of us would try to figure out what is lucky about stage iv cancer.0 -
HLB, I so agree with your point about becoming irritable at cancer centers. Especially when visits last 3 hours, a reminder of how sick I am. It's difficult to be cheerful and grateful when the treatment feels like punishment.
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The treatment feels like punishment, and even with insurance, it's very expensive. 😠
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Bon, I totally relate to that! When was your last period (2004), when was your last mammogram (bmx 2004). So irritating. What are the records for? Look at them! Tarheemichelle, yes and many of the people seem so serious it just brings it right home. The best example is years ago when first dx my mom and I were in the exam room waiting for the BS and we got to talking and really laughing about something, don't remember what, and when BS came in she put her hand on my knee and said "how are you doing? Do you need some ativan?" Lol I could feel my face suddenly go from smiling to almost crying! It was nice of her but just an example of how the dr visits bring me down almost every time. The exception is when I go for xgeva. My appt is always at 5pm so the check in is closed and I go right to the infusion room. They are very quick about it and the nurses are so nice, friendly and jovial. We talk about things like knitting.
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Last Period: A very very long time ago
No one has ever questioned this response. On occassion, it has even produced a smile. The piss-off though? All my medical records are right there, in the computer, that is sitting on your desk. All my appointments and treatments since 2005 have been at this same hospital! For some questions, I do write "Look it up." That never gets a smile.
*susan*
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You know, I have always wondered why we are asked the same questions about our medical history, over and over, when many/most of us go to practitioners who have the records right in front of them on a computer screen.
Caryn0 -
I agree - I just hate it when the doctor asked you to fill out multiply pages of information and then asks for the same information when you are talking to them or acts surprised by something when it was written in the paperwork multiply times. I think I am going to write on my next Multiply information form, "This is a test, tell me if you actually read my paperwork and found this".
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You deserve to have cancer as you are a heathen who doesn't to to church (My EX) (who has never been to church since he was a kid) thus EX!
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Karma will get him for that one.
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Save us all from those whose religious beliefs run along those lines. My ex MIL once said she was concerned that my daughters would go to hell because they weren't baptized. Good thing that they're Jewish so we can avoid that fate!
Caryn0 -
So, another rant that goes along with my last one. The other day, when I was mistaken for a man by the cancer center staff, I was grumbling about it to the rad tech. She's really nice and I like her, so I didn't take it personal, but still kinda ugh.
Today after my rad treatment, she gave me all the info for the look good feel better thing, because, you know, if I put on make up and wore a pretty scarf or wig people would know I'm female.
It's 100 degrees here. I have a wig that I love, but yeah..100 degrees, can't do it. And make up..most days I have to force myself out of my jammie pants to put on clothes. Some days, I just stay in the jammies. Make up, not gonna happen. I've never really worn make up. I'm a tom-boy. I not really one to do "girly" stuff. Getting dressed up to go to rads just isn't on my list of stuff to spend energy I don't have on.
What I really would have liked instead of being told "change yourself", is to know that some awareness of "no hair does not mean male" had been brought up to the staff. This is probably nit-picky, but it just irked me today. Thanks for letting me rant about silly stuff.
Oh and the religion stuff! When I told my mom my scan came back clear, she said "See, you should really thank god for that." I told her I thanked all the people who went to med school and did research to make the drugs and treatments that killed it. I think they had much more to do with it than god did. She didn't agree.It can't rain forever.
Dx 10/28/2011, IDC, 3cm, Stage IV, Grade 2, 4/11 nodes, mets, ER+/PR+, HER2-Hormonal Therapy 11/01/2011 TamoxifenSurgery 05/17/2012 Mastectomy (Right)Chemotherapy 11/26/2012 Adriamycin, CytoxanChemotherapy 01/28/2013 TaxolChemotherapy 02/20/2013 Taxotere0 -
Stormynyte, I so agree with everything you said! Medical people, and especially those working with cancer patients need to be especially sensitive and not assume--like that we're men or older than we are. When the rad tech thought my (older) sister was my daughter, I corrected him and said, "you should be more careful what you say to sick people." I said it in a friendly way, because I'm not confrontational, but I hope he thought about it a little! Maybe we need to suggest some sensitivity training to our medical professionals.
And the god thing--I'm amazed that so many people go there. How does an all powerful and all good god let little kids get cancer? Makes no sense.0 -
Mary, I think that's perfect for you to say that to the tech. How else are they going to learn?
I never understand how people can be so clueless. When they are at their jobs, they should be even more on the ball, because they are being paid and should have some professionalism.
There are many tactful ways to find out about a person rather than size someone up simply by their appearance. For example, the way you go about figuring out if someone's baby is a boy or a girl, you ask "what's your baby's name?" Not "what's her name?" or "what's his name?" if you can't tell. If the name still doesn't help, you wait for that person to speak and try to pick up some clues from what they say.
Also, rather than assume what two people's relationship is, a person can just politely ask,"are the two of you related?" in a chit-chat manner. When the answer is something like,"yes, we're mother and daughter" or "we're sisters" , a tactful person could say something like,"Oh, I thought so because the two of you have the same eyes" or something to that effect.
It's a matter of being observant and TAKING TIME to interact with others. Unfortunately, some people are not refined enough in their people skills. Many could use some improvement in that department.
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I have buttons that say "With a body like this, who needs hair?" that I got made at Cafe Press. They make me feel slightly better about being bald for a year now.
Jennifer
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Great button! Much better than a pink ribbon...
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Jennifer,
LOVE it!
Tina
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