Lets do a Sh*t People say to Metastatic BC Patients
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it did!
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Wow, I'm impressed by your organizational skills. I could never hope to even get close. Since my HMO includes everything from doctors to labs, pharmacies, hospital etc., it's all on one central computer system. I'd be in deep trouble if it weren't!
Caryn0 -
Those are GREAT ideas Bon! I'm going to do that and make copies. Really tired of the same questions every time. The ones who don't want to read it want you to sit there and repeat everything to them for the umpteenth time because its easier for them. Too bad.
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That is another one I hate...... "I'll pray for you", Stuff that, send drinking vouchers!
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I don't mind people praying for me, but I'll take the drinks too!
Caryn0 -
I have been called SIR many a times....
I think all we want is empathy, not sympathy, not advice. Just empathy. Right?
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How about, "when are you going to stop limping?" Answer--"When I stop walking and start using a wheel chair."
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I had a friend tell me today on FB that I needed to get out of my comfort zone sometimes! Told her I hadn't seen that zone in months. Of course she didn't answer me back -heaven forbid I might talk about the C word.
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Tasha, two thumbs up! And if you get extra vouchers, send them my way.
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why didnt they just cut off your breasts andyou would be cured.
don't worry you could be hit by a bus tomorrow.
stay positive you'll be fine
people can be so unaware of reality ..
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Re: bone mets and feeling like you are a "Bone mets only offenders"..I would not give that much thought, Bon. We all have this miserable cancer wherever it is, and you certainly are fighting your own fight. I have the cancer in bones & liver. To date I have suffered SO much more from the bones than from the liver. If it wasnt for scans showing me the lesions in my liver. I would not even know it is there. On the other hand, the bones have been very, very painful. I have been radiated three times, the cervical, lumbar and thoracic spine. Trying to get relif. Then I have met and talked with a number of women who had some really horrible "only bone mets" problems. Their femurs breaking, spines collapsing, big surgeries needed. Whew!!! Please don't feel like you hve anything to apologize for. I guess because it can become so lethal so quickly in other organs is why we are so afraid. I do dread when the time comes for the liver mets to show their ugly little faces. Butntill then I will just keep on fighting these bone areas
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I already got hit by the bus! And yes empathy is welcome, nothing more.
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Been living with the knowledge of being stage IV for almost two years now. Was feeling and doing fine till the begning of June, then the bone mets started bothering me. Spoke to the onc about pain managment and I felt that the Dr was pushing for me to take oxy. Well I tried lots of other things to ease the pain but finally broke down and started taking the heavy duty pain meds, nice not to be in pain but not nice to have my freedom limited, like driving, can't drive when under the influence. Fortunately we have good public transportation here but I still feel confined. The kicker is that DH tells me that everything will be fine and we should make plans for when I am better WTF? He still doesn't acknowledge that it is all downhill from here. I just hope it's a long slow ride downhill.
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I went as a support person with a friend to her first ever counseling appointment this a.m. per her request. When the therapist called us back to her office, I was walking behind my friend. As the therapist stood by her door to greet us, as I passed her, she looked at my soldier boy looking haircut (yeah - at least I finally have some hair), and then looked up and down my arm encased in a full length lymphadema compression sleeve and glove and said in a snarky tone "well this is interesting", half under her breath, but loud enough to hear. She initially thought that I was the patient, obviously coming in with some penchant to wear weird looking one armed sleeves and shave my hair short by choice. She did eventually ask why I was wearing the sleeve so I could tell her that I have cancer and now have to wear this MEDICAL COMPRESSION SLEEVE as a result of having lymphadema in my arm. I forget that I look weird till these things come along. Once again - my life in denial is a fine place to be. I prefer it actually and am mastering it like an art, till some idiot comes and shakes me out of my lovely denial tree!!!
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surdreams hope we all keep hanging on that denial tree till the very end. at least I am willing to do that!
hugs, Ebru
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Really, any therapist should have more sense than to make a comment like that. It's really acceptable and none of her business if you had no problems and just liked your short hair and sleeve!
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surfdreams, doesn't it make you wonder why people like that go into that kind of career? How can they be so unprofessional, rude and downright weird?
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Yes Divine - she did kind of sour me on the place right off the bat. Maybe she can laugh about it around the water cooler with someone that has a clue and can set her straight.
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To make a long story short - when I went to have my two abdominal surgeries in May and June, I had several nurses say to me, upon hearing that I had Stage IV breast cancer because they couldn't be bothered to read the chart, "Which breast? Right or left?"
Ok - A) I only have ONE BREAST LEFT and
STAGE IV means distant spread. And they looked at me like I was the idiot. I'm like, "No, it doesn't work like that..." and proceeded to educate them. The other question I love, and I get this ALL the time is, "Well, how long do you have to take chemo? What's your prognosis?" Um - let's see. The prognosis is, I'm going to die, and I have to be on chemo for the rest of whatever my life turns out to be.
Some days, it's really hard not to be angry.
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I am surprised how many nurses are NOT educated on Breast Cancer.
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Don't get me started on nurses ....many think breast cancer is not too awful because it's "the kind of cancer you can cut out."
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This one made me laugh...Every year I have thrown a tea party for the ladies in my congregation. One of the older ladies (she's in her late 80's) called to say that she couldn't make it. However, she hoped we were both alive next year so she can attend.
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Some of my family have a really hard time with my illness, which I understand. My brothers can be clueless. One brother commented that he guessed I was still single because "well, with the cancer, nobody would want you." He didn't mean it to be rude, but we joke that he is in an ivory tower while the rest of us are in the trenches. When he or my other brothers try to tell me I'm "not dying, right?" because I "look fine," I usually respond, "Of course I'm dying. I'm just trying to do it as slowly as possible." They really only want for me to be happy, but they don't usually get that I have had to find my own happiness within the parameters of cancer. Even when I am truly happy, there's a sharp current of pain or grief or...something, I don't know. But it's there, and I will not deny it. But I also won't let it ruin my life.
As to nurses, when I was in the hospital a month ago with pneumonia, most of them were wonderful. But one was a total jerk who didn't want to deal with the whole bedpan thing. I literally could not sit up in bed without my heart racing and struggling to breathe. He kept saying, "You can get up to use the bathroom, come on, just breathe!" (Hello, I have pneumonia, I'm here because I CAN'T breathe, duh!!!)When he finally realized that I COULD NOT get up, he sighed loudly, shoved the bedpan under me, handed me a wad of toilet paper and stomped out. What a weasil. They moved me to the ICU for a week after that. But if only I had just BREATHED, I would have been fine!!!
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Raro, I think I would have had to complain about that nurse! It's humiliating enough when you can't go to the bathroom on your own, without nurses making it worse! My experience with the nursing staff and CNA's this last time was very good. I was so worried about using the bathroom and so embarrassed, but they all assured me that they weren't bothered at all.
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Early on in my diagnosis, I decided it might be helpful to go to a therapist so I could vent my anger/fears to someone who wasnt emotionally connected. Well.....I got what i was looking for. The knucklehead YAWNED the entire session, even trying to stifle his yawning! My one and only visit to a get "help".
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A yawning therapist? A nurse who berates a patient too ill to get out of bed to use the toilet? Who ARE these "professionals" and how did they ever get hired to take care of people at their weakest moments?
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Seriously, I think I'm going to start telling these knuckleheads off... telling them off and taking names! UGH! I'll be the crazy cancer lady, but sanity is overrated at this point. Love to you all!
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Health care providers are people too. Some good, some amazing, some amazingly stupid.
I've been lucky enough not to run into the last, though I have run into a few [nurses mostly] who don't seem to know what they are doing.
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I'm tired of basically having to defend breast cancer as a bad thing or potentially as bad as other things. A family friend has recently been diagnosed with stage 4 stomach cancer, and his surgeon did initially say that it was not treatable. Since then, he has found an oncologist that is getting him into trials and trying to pursue some options. I have had multiple people say to me "well at least your wasn't as bad as his" or "you know, his is stomach cancer not breast cancer". I try to just smile, but I want to scream at people and say 'do you not get that all stage 4 of any cancer is terminal; it's just how long that term is that may vary'. My doctors never expected me to see NED & I'm so thankful every day that I've had the last 3 months, but I know that can turn on a dime. Yes, he is worse off than me right now, but please don't diminish what I've gone through in the last 13 months. (Whine & vent off now - thanks for letting me do it though)
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Right now I'm lying on a hospital bed waiting to get chemo. I have bare feet and am covered by a sheet.
About an hour ago, This weird touchy feely woman (I found out afterwards that she is an intimacy counsellor), came up and grabbed my toes through the sheet and said "how are you today". Apart from the fact that I don't want a stranger coming up and grabbing my toes, I also have bad neuropathy that makes my toes extremely sensitive and painful.
I yelled at her not to touch me, and said how could she be so stupid as to touch someone she has never met before in a hospital when she doesn't know what is wrong with the person and what hurts them.
I felt quite good after yelling at her - but she probably thinks I have intimacy issues...0
