The dumbest things people have said to you/about you
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Shortly after my lumpectomy, before chemo, me still in the whirlwind of the scary path report, one co-worker asked: "I´ve heard about your condition. What´s your prognosis?" I was just numb ... I said then: "Well, I´m still here." And turned away. She really has ZERO clue!! And she´s the same age and has kids in the same school as mine... no idea what she was thinking.
And another mother of kids from our school: "We have a friend and his wife had cancer... she was full of cancer and she was dying in hospital for more than a year. It was awfull for our friend." ?????????????????????? I wasn´t able to say anything.
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JaBoo--what to say to things like that, especially that last one. "I hope that doesn't happen to me"? "Why are you telling me this?"
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yeah. I love that one: you're going to be alright, aren't you? That's the plan. Check in every five years.
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Flying-Yogi - yep. I suppose some folks “need” the reassurance that we’re okay for one reason or another - so they don’t have to worry? So they can move on? Or out of compassion? But really, HOW THE HECK DO WE KNOW if we are okay, well, cured? No one knows anything except about the immediate “now.”
In THIS MOMENT I’m great. Who knows whether or not I’ll have a recurrence?0 -
I think people wanting to know if we have been made cancer free stems fron old ideas that were held by the medical community at one time. It used to be thought that malignant tumors have to grow enough and then eventually start shedding cells when they get big enough and that might often be the case but we now know that it's not always that simple. That only a small number of cancer cells are capable of metastasis, that small tumors can produce these cells, that normal cells can actively prevent metastasis or be recruited to facilitate it. That metastatic cells can go dormate for decades, etc, and most people won't find any of this out until they actually get cancer.
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It's all about your attitude, work through the pain. YOUR attitude isn't going to prevent you from dying from this disease I expect it will only ease concerns of others around you.
People who don't have the disease should just shut up.
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Meow - “work through the pain”??? WTH? I was just sitting here thinking about what a baby I am, as so many people have more extensive nets, mets in viral organs, stuff like that and I can barely move because of my freaking back! This pain is unbearable; unlike pain I’ve ever experienced. I think I would’ve slapped someone if the told me to “work through the pain”
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Some including medical people want to tell you to keep moving for joint pain. Well I was doing that and it didn't help at all. I absolutely hate going to the doctor. In my lifetime I have had very few occasions when a doctor actually helped me. Most of the time I feel like going to the doctor is a complete waste of time. Of course getting diagnosed with BC I had to get rid of it. So when I had joint pain from the AI side effects I tried to ignore it until I literal couldn't get out of bed. My oncologist said why didn't you tell me sooner? Really, because I would get ignored. It took along time after stopping meds for the pain to ease.
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My MO said to keep walking there wasn’t anything really wrong with my hip, just the meds. Two months later the orthopedic said it was bursitis, two injections later it is good
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NativeMaine and bella2013 - I know this is really late in the discussion on the sentinel node injections but I had just looked into this as I was not given anything to numb the breast and the pain was so severe that I call it unhuman to do this procedure WITHOUT anything!!! I had it done monday and still when i think about it get such tension and remember that pain. I am wondering if it is also due to where the tumour was - mine was about 1 o'clock, some people don't get much pain from it. I aslo was thinking maybe it was my hospital that only did it this way but apparently not!
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flowerlover2, my tumor was at 1:00 also. It was close to 5 cm and went under my nipple. Women who have sailed thru this procedure without the traumatic pain that I experienced has led me to wonder if tumor location was a factor.
No, it wasn’t just your hospital😱.
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Bella2013, uhmmm, they do this injection while you are awake!! My tumor is at 1:00 position as well. I have not had my pre op appointment yet, and actually waiting to hear from the doctor today to see if I am still a lumpectomy candidate. i guess I thought they did this during the surgery. How long before the surgery do they do this?? I think I am still traumatized from my first biopsy when I didn't get numb!
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Hi, Dani, My tumor was at 1 PM as well, but not close to the nipple. The injection has to be done in advance to allow time for migration to the lymph nodes. For example, my injection was at 7 AM for surgery scheduled for 10 AM, but not actually performed until 11:30 AM. Luckily, my injection pain wasn't bad. I had a number of Synvisc injections in my knees & a couple of those were far worse than the sentinel node injection. You are well within your rights to ask about what can be done to minimize any pain.
My mouth is weird in terms of the amount & location of where novacaine must be injected. Far too often, the dentist will start to work when I'm not properly numbed. 😧
Lyn
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I was talking about how hurtful it was to me that NONE of my sibs had bothered to reach out to me for two weeks after my first chemo even though they all knew when it was and I'd said repeatedly, when they'd asked what they could do, how important it was to me that they continue to let me know they were thinking about me. Someone said, "Has it occurred to you that they might be scared?" WTF? I said, "Yes it has, but has it occurred to any of them that I might be scared?" Apparently it's my job not just to fight this cancer, but to take care of the delicate feelings of my extended family.
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I'll throw in my two cents about the injection. Do you mean the dye they inject into the breast just before surgery? If so, mine was done the afternoon before my surgery. I was absolutely beside myself with fear because I knew they would not be numbing the area first. The radiologist who did the injection was so compassionate and kind, and she sat and held my hand while I cried and told her how scared I was. finally I calmed down and said just do it and let's get it over with. And then I was really surprised because I didn't feel hardlyany pain at all. Just a pin prick. So I figure either she was that good or I was too scared to feel it! My tumor was at noon/1 pm. I think I quickly got to the point where I didn't care what they did; I just wanted the tumor OUT!
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My injection of the radioactive dye was a day before, with imaging done an hour after the injection. I got about 4 injections in the area of the tumor. It was not pleasant, the injections hurt. But I felt it like a larger injection, say a vaccination. The pain went away after a few seconds. So for me, nothing bad. The tumor was at 2 o'clock.
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I didn’t feel any particular pain with either biopsy or with radioactive dye. Unpleasant, but not something I have nightmares about. My tumor was at 3 o’clock right by the nipple. The radiologist did say that the amount of pain depends on the tumor location.
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Flowerlover2--the turmor I had was at the 10:00 position, about half way between the skin and chest wall, and about half way between the nipple and the breastbone. Apparently no numbing is a common practice.
Wanderweg--One ofthe hardest things about this journey is coming across people that we end up needing to take care of when we need to be taken care of ourselves. Always seems like there are a few people out there who end up taking far more emotional energy than they give. And yes, I understand that people can be scared about the situation, and I give them leeway if/when they say something seriously unhelpful because they are scared and don't know what to say. But I tried not to spend too much time with any of them while I was in active treatment.I needed all my energy for myself.
Snickersmom--I'm glad the injections weren't too bad for you.
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I need a come back, any suggestions. A couple of my girlfriends always focus on my reconstruction with comments like: oh, you will get some nice perky ones, how are your new boobies. I hate this but don't usually reply but sure wish I could come up with a come back. Any suggestions. We are a bunch of golf friends and some of these girls just come out with these comments right in front of the husbands that I don't even know.
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A few:
The direct apprach. "New subject."
Quiet them with discomfort. "Actually I can't feel much and have had a hard time getting used to it."
The crude. "You guys sure think about my breasts a lot."
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one of my closer friends said in a group discussion that people with cancer tend to have repressed emotions. I was like, “B#tch what??!!” I’ve been in freaking therapy all my life and my tears have never held themselves back. Soooo annoying! I immediately said, “hmm I really don’t believe that is true.” She backtracked and tried to say she meant something else. Super uncoo!!!
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WC3 I like the suggestion to Goldfish, quiet them with discomfort. That will surely work. I get the whole, hey at least you will get a boob job, a lot. Sometimes I can blow it off and sometimes I reply with, well actually it is not like that at all. My breast tissue will be gone so I will have just an implant under my skin. I also get really tired of hearing, but it is curable so after you get the surgery you will be good. Yep folks, this shit is a walk in the park!
Also surprised by a friend that completely stopped contacting me after I told her. Except the one time she texted me and says "how are you, just haven't heard from you in a while" I replied with hanging in there and that was it. I wanted to reply with, oh you know just been busy having cancer and trying to figure out the best way to rid my body of it.
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Show them recon photos.
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"Show them recon photos"...Best suggestion ever!!!!!
Vickki
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native, I've worked hard the last few weeks on letting go of the idea that my sibs will be here for me in any menagingful way. I don't keep them updated anymore and I don't hear from them. I did get a group text this morning talking about one of them moving as I sit here getting chemo. No mention of that. I just deleted the texts and let it go.Instead, I'm relying on my husband, kids and some amazing friends who do understand that I need them staying in contact with me.
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wanderweg and all others who have experienced the emotional distress of friends or family not being a support, I really understand and feel for you! I knew this could happen but didn’t think it would happen to me - all my family and friends are kind and empathetic people. Well a year into my stage IV diagnosis that ain’t true! I have lost a friend -she disappeared for months, and my oldest sister has been no support and actually quite uncaring to cruel at times. I can’t handle that, I just need love and supportive people in my life so I have no contact with them. As my DH says, “fuck ‘em all.” I am fortunate that I do have a lot of supportive family and friends but it hurts when people can’t be kind when you need it most. A lack of empathy. Put your energy towards the helpful relationships. I had lunch with two friends today and it was very nice!0
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My tumor was at 6:00, the injections hurt like a m*****f*****
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Is there a reason they don't numb the area or give sedation for the dye injections?
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Snickersmom,
I think maybe you should consider that comment by your husband to be kind of neutral. After all, you asked him if you should wear a bra after you complained about your belly being noticable. I know that when I lost a lot of weight (prior to bc) it was the first time in years that my boobs stuck out farther than my belly and It did indeed make me look less matronly (or younger?). Since it probably didn’t occur to your DH that that might have been a trick question, he probably just considered how wearing a bra would change your appearance and gave you an honest answer. He did not say he would prefer that you wear a bra.
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I was told that numbing would potentally interfere with the dye process.
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