STEAM ROOM FOR ANGER
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Sometimes if you are nice they do over and beyond sometimes. we ordered a special puzzle and the box came and was all damaged and not sure all the pieces were even in there when we got it. Think it was the place that delivered it putting something heavy on the box. once we contacted them and explained the issue they just sent a new one with no questions asked and did not ask us to return the other one even. We kept the crushed box for our grandkids to play with at our house. just a fast email and a got a nice response. being nice does help sometimes. no matter how upset you may be. Sometimes just have wait to do it until you can calm down enough to write it nicely.
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When I contacted the place I ordered the mug from I was upset but was very nice to them. They understood my being upset and said it was unacceptable that my order was broken in transit. So yes, it pays to be nice.
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I have waited a while to post this, thinking my white hot anger would cool, but it hasn't. What really p####@@# me off is when people who don't know me and certainly don't know my life experience tell me that MY opinion about MY situation is wrong, and that they know how I truly feel. It is the very worst possible gaslighting and disrespect. The very dark side of me thinks to myself - just wait, sweetie for some time to pass and you have experienced some of the really shitty side effects, or seen wonderful women who are taken, or worn down by this ghastly, malignant disease, and then come back and tell me what I think. Rant over - and thank you - I feel heaps better.
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Everyone has different side effects from things and it is very awful for people to do that to you. You feel how you feel and know what is going on with you better than someone else.
i have someone I used to work with whose mother had died from this and now every year in October she wants to give me some pink crap since I have no died yet. I hate the stuff and do not want to hurt her feelings and just pass it on in a give away box.
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@bcincolorado, that is a lovely thing to do. Gentle and kind.🌼
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I am so ticked off I hardly know where to begin. I had good news last week that my abdominal node biopsy was negative and after a bone scan, ct scan pet scan and an MRI my oncologist said there was no metastasis and that I was basically like a newbie coming in with grade 1 ER+ cancer. My mammo showed a problem in June and my dx was at the beginning of August when I had the biopsy. Recurrent cancer. Same breast, same area. So after all these tests my oncologist was telling me to hang on before meeting with surgeons or plastic surgeons. I understood that he didn't want me to go though all those steps if it was the worst. The worst would have been Stage IV and all the treatment that goes with it, but no surgery. Okay, so I'm feeling good and I find a doctor at MD Anderson Cancer Center who is just a little younger than me, lots of experience and a great bio. I'm thinking this is terrific… I'll discuss my ideas and see which direction she thinks would be best.
Instead of getting a normal human with compassion, I get talked down to. She has a student in the office and most of what she's telling me I already know. Fuck this is my second time with the same damn cancer. She is treating me like I have never read anything about cancer and have no idea about my own body. Personally it felt like she was speaking to me to "teach" the student/kid that was in the corner. Every time I brought up a plan, she knocked it down. When I told her the type of reconstruction I would be interested in she tells me it won't work and she knows people who go flat. Nothing wrong with flat, but the bitch wasn't listening to a word I said. Then she's telling me my mass is probably bigger than what the MRI shows and that my oncologist, who I think is great, is wrong about Arimidex and other things. There is so much more, but needless to say I am so angry. I understand we aren't going to groove with all doctors, but damn this was bad. I called my MO when I got home who listened to me for a few and asked him for some recommendations. I sort of wish I would have done this first, but big new cancer center seemed like a great plan. Ah, the best laid plans.
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Rocky,
I’d be pissed too. If you can, get a second opinion.1 -
Time for a new doctor. If they do not listen or respect you now, they will never change. Respect is not one way. You know the ropes so self-advocate to ensure your needs are met.
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Thanks mommyof3 and betrayal,
I am pretty tough and capable most of the time, but I am starting to lose it. She was my 2nd opinion :-(. My first surgeon isn't a specialist and told me to go to MD Anderson. Now I'm looking at a third opinion… uggg. I guess I also have to meet with a plastic surgeon too. This shit is making my head spin since each step is highly intricate. I have no clue how long this will take to get together. My mammo was in June, but I am pretty sure this mass was there last year. I just thought it was part of my scar tissue from my old lumpectomy and the mammogram from last year didn't catch it so I guess there is that too. I hate this effing process.
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Hi Rocky, Sometimes the biggest name hospitals are not necessarily the best places to be a patient. I ended out going to the #2 cancer center in the city (but in the top 20 nationally) because someone who went to the #1 in the city (top 3 nationally) told me that while she got good care she felt she was regarded like a medical record who was too "ordinary" to contribute to their research and didn't have input towards her treatment plan. I have received excellent personalized care and also have access to good doctors in any other specialty needed for SEs. I hope you find a good fit for your surgery and followup.
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Some good MO have no bedside manner I know. The first one I had retired and the one who replaced him questioned the treatment I been given so far even and she would have been more with mine and he was more conservative in treatment. It took me a long time to warm up to her and trust her.
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@rockym that just sucks that that dr didn't just lay out the facts about your options.
I just had a visit today with the plastic surgeon. He repeated everything the breast surgeon said. I too have had a recurrence In Same breast. Actually of a different kind of breast cancer.either way they both said and ive read that an implant is risky if you've had radiation. Or you could go with a flap surgery. Figure on 6 hours plus 6 week + recovery. Or go flat. I've opted to go flat cause at anytime could change my mind and have reconstruction.
I was hoping for fat grafting since I'm not so big but the fat requires blood vessels to attach and a mastectomy is a must.
Ugh. Good luck finding a better doctor.
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gail, thanks for the reply. The one thing this lady said was that DIEP flap is what their patients prefer and that is how they get the implant to fill out the area. She didn't say anything about radiation except that I couldn't have it again (which I knew) and that it is a must with lumpectomy. I tried to talk to her about newer studies that say women 55+ may be able to skips rads (specifically someone that would be in my situation) but she didn't want to hear a word I had to say. I'm curious… what is your surgery for if you are now Stage IV? My MO said if I was Stage IV (they spent 2 months testing everything) that I wouldn't have any breast surgery and that is one of the reasons I don't have those other doctors lined up yet. I can't believe I am back here after 13 years. Exhausting as hell.
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Exhausting is a good way to phrase it all.
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@rockym . This is a new primary cancer. First was er+ her2-. This one is triple negative bc. So chemo necessary as well as mastectomy. I'm doing very well on it.
My dr told me that women prefer the implants though it may require more surgeries over your life. The diep flap is more natural feeling though.
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I had an implant and guess what at this point not doing any more surgery at all. Have a feeling at this point in my life I am not sure how far I would go with surgery at all. All surgery has risks and recovery and the older you are the worse it is. Then there are other health issues to consider as well. Is it worth going through all of it and how fast is that cancer going to going to grow. If it is a slow one which most of them are it could be something else is going to kill you before the cancer does anyway so can't see going through it again. I am so deformed at this point and it is what it is. Could i go and fix things at this point yes. Do I want to do that when DH does not care either no. I figure getting up in the morning a win and being able to get the bed made and dishes done and dinner fixed for the 2 of us at this point. Usually by 4 I am ready to go lie down and watch tv for a few hours before going to sleep.
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So I guess this is life; testing, treatment, testing, treatment, repeat., repeat, repeat. I really want to go back to my life without multiple Dr appts every week.
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I thought I had graduated from BCO Academy. I still read new posts, but I haven't contributed in ages. But I need to vent, and this is a good place (and for the first time in ages, I was able to sign on!)
I had a chest, abdomen, and pelvis CT in June as part of my long-term follow-up for the 2018 kidney cancer. A THING was mentioned growing in my spine, "probably a menangioma, not changed much from earlier scans." WTF, that's never been mentioned in the scan reports! I went back through all of them on MyChart, and nope, never mentioned. So, I had a regular checkup with my PCP in July and asked her about it. She looked up the scan, said its just a small cyst and nothing to worry about. Then I get a call from her office a few weeks later that said she'd done some reading on menangiomas and they're sometimes associated with people who've had breast cancer, so I should keep my MO appointment in September and ask her about it (I'd been given the option of ending MO visits if my scan and bloodwork were ok). MO says she doesn't really know about menangiomas since they're not cancers, but refers me to a neurosurgeon "So you can tell Dr. PCP I did something." WTF #2. Got scheduled with Neuro doc, also an MRI before, had to reschedule both due to The Cold From Hell that lasted for several weeks. Finally had the MRI, then the Friday before my Monday appointment, the MO's nurse called to tell me "Make sure you don't miss the Neuro appointment because Dr. MO says it's cancer." WTF #3. Go to Neuro appointment, he says it's a menangioma, most likely benign, but it's large and I need surgery sooner rather than later or I'll risk all kinds of problems like losing use of legs and bowels and other nasty things, and would need a much larger surgery. This one is smaller but no picnic. Hevshowed me the scans and how it had grown significantly since it first showed up about four years ago. Minor cyst, my ass. WTF # 4. I have an appointment with my PCP for a minor something follow-up next week. That's gonna be a heck of a conversation. I wish I could have a conference call with all of them, tell them to get their effing stories straight, and get back to me!
So that's me, how've all of you been? 🤪
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Hi @alicebastable , It’s not 2028 yet but the universe must have thought life was getting too easy for you. Sometimes there is a huge difference in the report depending on which radiologist reads the scan. A local radiologist identified my hip MRI blip as bone marrow conversion with a tiny chance it might be a met. A radiologist at the big hospital looked at a CD of the same scan and identified a 2.5 x 2.3 x1.3 cm ill defined lytic bone lesion, confirmed by a second opinion (but still indeterminate since it can’t be biopsied.) I don’t blame you for being upset that the meningioma wasn’t mentioned for four years. Surgery near the spine sounds scary but the consequences of not having it done sound worse. Feel free to vent any time you need to. I hope things are going well apart from this. Hopefully the surgery will be successful. The weird SEs of breast cancer seem to keep on appearing no matter how many years go by.
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Your posts have been missed but not for this reason. Hopefully you can get this taken care of before 2028 and get a bye year. Fingers crossed.
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Alice - it is so nice to see you back here, but as Betrayal noted, not for this reason. I am so very sorry this is happening to you. I completely agree with Maggie, that while the surgery does not sound like any picnic, not having it sounds a lot worse. Please know that we are here and I as always, am supportive and interested in knowing how things are going for you. Please keep posting and let us know how things are going as this moves along. You've handled so much, so well, over the years, and I am sure you will be able to handle this too!
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@maggie15 Oh, I've had plenty of scans in the last six years, and I'm fully aware of the variations in interpretations. This was a matter of a fairly consistent result never being mentioned in the report posted to my portal for FOUR YEARS, so it couldn't be discussed, and possibly removed, at an earlier date. And it is IN my spine, rather than near it. As I get older (I'm 74), I am more reluctant to have surgery, and I very much dislike having to decide to have a surgery on fairly short notice when I could have had much more time to adjust to the idea. And even more, I dislike three doctors I need to trust giving me such conflicting assessments.
@betrayal How nice to see you! I'll keep your thought in mind, that this might mean an all-clear for my dreaded 2028!
@threetree Thank you so much for your comforting words; it means so much to me. I'll try to stick around as long as the site allows me to stay logged in. I'm happy to see anyone from my previous time on here, although I'm so sad that we've lost too many of our BCO family in the last few years.
I hope all of you are doing well and it's great to reconnect.
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Alice, nothing wrong with telling your doctors how displeased you are with their quality of care. You seem to be very good at expressing yourself tactfully. Yes, if they are the best for your care I would still use them but put them on notice that I would be monitoring my care with a magnifying glass. They many not like it but after all, it is your life they are dealing with and you deserve their attention to detail. In other words, politely give them hell.
I was made to wait a year for surgery that ended up removing a precancerous bowel lesion that "reappeared" after an attempt to remove it a year before. Between the time it was "rediscovered" and the time I saw the surgeon was less than a month due to urging by the physician who found the lesion. He actually made the appointment for me the day I had the results. Surgery was scheduled within 2 weeks of that appointment (which was less than 10 days after the results) and I spent a week in the hospital. The "wait and see" after a year of concern on my part ended up becoming an "urgent" surgery.
So even though it seems your surgery is also urgent, it is in your best interests to get that bugger out ASAP.
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@betrayal My brain knows it needs to come out, but the rest of me is cranky and stubborn. It's a more invasive surgery than any of the cancer ones, and I think it's the four days flat on my back in the hospital, plus physical therapy after, that I'm resisting until I get used to the idea. I really hated mu hip replacement routine, and i was quite a bit younger when that was done. Since I'll see my PCP next week, I can make a list of my other concerns and vent at her and.let her sort out the bad communication.
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Alice - you’ve been missed but I am so sorry to hear about the need for another surgery. It must be very frustrating to get the run around from your doctors. The 4 days flat on your back in the hospital is no fun, but hopefully they will keep you pain free and it will pass relatively quickly. I’ll be thinking of you. Please keep us posted when you feel up to it.
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Having the week from Hades! My stepdad was rear-ended on Friday and even though he’s okay, he had to go to the ER on Saturday as he could hardly move and was in a lot of pain. Diagnosis was pain related from the accident. Aside from his pain, I am happy he’s okay. But then the usual drama between my mom, my brother and his girlfriend started all over and they are trying to pull me into it. And now my hubby is getting mad at me for not cutting them all out of my life, even though I am trying to stay out of the drama. On top of this, I have had a cold that has been going away and trying to resurface. I’m ready to give up!
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Family drama is something no one needs. The holidays are coming and may well decide to do our thing that is quiet with just us at the house a lot less stress that way and noise.
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My mom and step dad live at least three states away from me. So not worried about drama on the holidays. Looks like the holidays will be spent with my Daddy’s side of the family. Haven’t done that since he passed away in ‘79 and hubby and I are so looking forward to it. I’m just getting tired of the constant drama.
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Stressed out on holiday right now for Thanksgiving and not knowing what is going on. My son was hosting last year and think he asked niece if she could do it this year and she said they do not have enough room to have everyone there. At our house last time we did there was 14 people and the dog and the kids and all the noise and al the people and we had to set up tables in the living room and could not sit together and had 3 different tables set up and brought out the one from outside and brought out one from the kitchen into the living room and moved the coffee table into a back bedroom and it was a so much work and stress on me. Then my mom made a comment that someone else younger needed to be the hosts now but to me it is more also more stress on them and more work on them as well.
When son hosted they used paper plates and plastic wear and not good dishes like I do for a holiday meal either. We also did family style meals and they did a buffet and fix a plate and go sit at a table to eat. Then DH still wanted a turkey and all the sides at home to have his own stuff left to munch on at home for a few days. To me once they are married and have kids it is easier sometimes to have just a small meal and face it no one needs that much to eat or that much stress either.
At this point found out DIL's dad is going through dialysis 3 days a week right now and know her folks are older than we are and she is not doing well has health issues of her own. I think they may want to do something small her folks and we do our own thing here. My mom lives 2 miles from us and is 87 now and almost 88 now and usually we have dinner with her anyway. Smaller and quieter is better to me.
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