STEAM ROOM FOR ANGER
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Poor handling of the pandemic has overwhelmed many healthcare systems. This certainly has affected cancer treatment including mine. Beyond cancer, forcing unvaccinated children into schools without mask mandates and updated ventilation systems is so dangerous. Some will die. Many will have lingering side effects. My kids are young adults, but I can empathize with parents of kids too young to be vaccinated.
Some of us are immunocompromised. Anti-maskers/anti-vaxxers think we're expendable. I will not agree to disagree.
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I see this thread turning over day after day with many different subjects and rants from the people in here. The OP should be the one policing it. Or the moderators. As I stated earlier, I am done publicly posting anything further regarding vaccines. Hope that makes you feel better now.
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As I can see, some still want to talk about it. I will gracefully bow out of this thread. I'm done. And me feeling better has nothing to do with it. When people say some are rude, yep. I'll go elsewhere. Thank you. I'm here to have support and give support.
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Hi all, just popping in here with a friendly reminder that we do have political-friendly threads where you can feel free to share your views with like-minded members. If you'd like a link to that thread, please send us a PM.
In the meantime, please try to keep this vaccination conversation away from the political angle. Thank you in advance!
--The Mods
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Thank you, Mods.
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Mods - Thank you! Vaccination talk is not only about politics. It should never be.
Here's a video by a man whose wife with Stage IV breast cancer was discharged early from her hospital because it was overrun by unvaccinated COVID patients. 🤬 He states that anti-vaxxers are free to not get vaccinated, but then they should not go to the hospital if they get COVID.
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What Jason said.
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I paraphrased. He understandably swore a lot.
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Jason, thank you for that ! You speak the truth
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OKAY FOLKS, STRAP IN...HERE IT GOES:
I am SO ANGRY on SO MANY fronts!!!!!!
1. Not much support from narcissistic family (I am single w/o kids, so parents & sibs). Examples:
Mom responded w a "bc is so treatable now, I wouldn't worry" ; "oh, I had skin cancer & radiation" so basically, "been there done that", "I got thru it", so your news isn't a biggie! (BTW, mom's dermo scraped the cancer off a few times on her angle in his office and his office staff zapped it once a week for about 8 weeks (never any thought of chemo or anything; no oncologist or specialist; and its not the "bad type of skin cancer" (not minimizing, just saying - could it be pre-cancer???).
When mentioning to my mom that: I felt that the BS & PS were kind of minimizing the impact a likely "disfiguring lumpectomy" (their words) (no breast material to re-arrange) would have on me given I would lose my whole lower pole of my 32 barely AA breast AND PS, when pushed whether I should get a MX instead & implants - he said, implants are my only option, but I "may want to consider going flat since I don't have much breast material and I am small any way....moreover I would get a "pretty darn fake result" from implants w tons of rippling given my boney frame (I like the PS - he was honest and I asked what he would suggest to his daughter if she was me, ...but don't like his rationale/message that basically was, "if you have small boobs it's not that diff to go flat on one side"), MY MOM SAID, "did you watch the olympics?.... those athletes are all very flat" ...."You need to get over it and stop making a big deal out of it." She said this despite the fact she knows how amazingly insecure I have always been about my tiny out of proportion breasts - and how i always felt less feminine. In fact she noticed the bump sticking out of my breast in the first place, not me! I hate them so much even pre-bc diagnosis I wouldn't look at or touch them ever. They even got worse looking after a med increased my prolactin so they got bigger and when I went off they got dents in the sides and lost 75% of their fullness - looking like they perhaps would have looked if I ever breast fed (never preggers). Boy, I guess it's karma, huh? Wish I could have my healthy tiny sad looking breast back!!
REALLY - SO BASICALLY IT SHOULD MATTER LESS TO SOMEONE W VERY SMALL BREASTS TO GO FLAT AFTER A MX OR TO BASICALLY END UP W A SHRUNKEN PUCKERED BREAST IF I OPTED FOR A LUMPECTOMY & RADS INSTEAD. SHOULD I CONCLUDE THAT MY TINY BREASTS AREN'T PARTICULARLY DESIRABLE OR ATTRACTIVE SO I OUGHT TO JUST LIVE WITH IT - NO BIGGIE, RIGHT??? I JUST DON'T HAVE A RIGHT TO BE GRIEVING ABOUT ALL OF THIS....IS THAT RIGHT? Sad thing is...I kind of believe that BS. That's self hate for ya, huh?
My brother called my newly diagnosed breast cancer "just another excuse" because I am taking too long in his opinion to complete resolution of my aunt's estate (i am executor) despite the fact he isn't a beneficiary and I have been stuck taking care of my father who fell 5 months ago and now he's incontinent and handicapped...and did I mention he is 92 and has dementia. Plus, he cant be left alone as he may try and walk. PLUS no one is pitching in w my dad!
etc etc etc
2. The PS's comments - see above. Plus the BSs comments - see above. DO THESE PEOPLE REALLY THINK THAT ALL OF THIS ISN'T DEVASTATING BC I AM SMALL BREASTED SO THEY CAN JUST KIND OF DISMISS ME???
3. Why did I have to bring up that perhaps I needed to consult w a PS before deciding on a mastectomy (not medically necessary per the BSs, but an option) or risk a "disfiguring result" from a lumpectomy to remove my entire lower breast pole and some skin that I would likely be "pretty disappointed with" since it may create a shelf under that breast and end up puckered into a hole after rads"? Why was their crickets at first when I asked if they thought it's something that I should do, when I mentioned all the reasons why such consults are strongly recommended based on what I have researched (esp in cases such as mine where fat injections and breast material re-arranging just aren't an option).? But both then tried to back off their first comments and said something akin to, "it may not look that bad" if I went w a lumpectomy/rads. See bold sections above. And I met w 2 BSs! See #4. Then, after some pushing, I got the, "well, you can consult w a PS if you think you want to." Wow, really?
4. Why the hell didn't the BSs tell me I couldn't have (or at least may not be able to have) a reconstruction in the future if I went w lump/rads when they knew I was very very interested in reconstruction and it was generally agreed I would be left with a significant defect aka disfigurement after lumpectomy/rads? I'd say losing your entire lower pole of your breast (to your ribs) would look pretty bad, esp after rads, wouldn't you? (Both PS I was referred too will not do recon after rads. Both PSs are well regarded breast cancer reconstruction specialists from massive prestigious east coast hospital/university/medical school known as one of the top BC treatment and cutting edge research institutions in the USA). (Yes, I know now that many PSs do reconstruction after rads with good results - but the complication risks are high).
5. Should I have been offered the opportunity to see a medical oncologist after my core needle biopsy pathology report came back with the comment that there were "several foci suspicious for lymphovascular invasion" before going forward with BC surgery? See #6.
6. When I brought up the issue of the biopsy pathology report commenting on seeing "several foci suspicious of lymphovascular invasion" with the 2 BSs I consulted with, and expressed significant concern re same, why did they literally say nothing??? Granted, I asked a bunch of questions and am a bit of a motor mouth, but either refer me to someone who can answer my questions or explain why a core needle biopsy path report really isn't "relevant" or often "factually correct" or "shouldn't be a concern at this stage" especially when I specifically ask these questions? I mean, if comments like these in biopsy path reports more often than not turn out to be wrong, meaning the final path report that is generated after lumpectomy/mastectomy concludes there is no evidence of LVI, shouldn't they be able to tell me that if I actually ask that specific question??? I mean they do read all the reports? Or at least say they never really thought about how often suspected LVI in a biopsy report turns out to be positive after surgery in their practice? Aren't these issues something that BSs should be able to answer at least in a general way? Don't they make the referrals to medical oncologists if they think, after the first biopsy, that based on the path report someone w knowledge ought to weigh in before surgery? A nurse navigator referred to the 1st BS for a biopsy after my 3D mamo/ultrasound.
7. I am getting tired of people telling me that the bright side of BC is a chance to get the bigger tatas I always dreamed of for free. I mean, really????
8. What's wrong w people who say it's wrong to consider breast recon just "to please a man"? I am not only single, even if I wasn't I would be doing it for ME!!!
9. And to the people who say, "well your health is more important than worrying about reconstruction" I'd like to say, no crap morons. The two aren't mutually exclusive. If you knew me you would no I am not someone that would put aesthetics before my health and life for god's sake! Daft dolts!
I really have had quite a lonely miserable time with all of this and have not been focusing on myself because of my responsibilities w my father etc etc etc. This type of aggravation, nonsense, stupidity, BS etc is what's truly depressing me and making me feel so darn alone. Sometimes I think I am just thinking to much about it since i am likely early stage and in fact maybe I will feel ashamed if the prognosis isn't dire. I mean, maybe I should be grateful? So many people get far worse news and struggle more...and have families and kids to worry about. maybe I am just a whiner. Or maybe it's my CPSD from a lifetime of trauma inflicted by my family that makes me minimize everything and think I should be ashamed of worrying about myself/issues.
Maybe I really am invisible and none of this stuff matters. (ok, now that comment sounds like I am throwing a pity party, huh?)
To anyone reading this, I apologize for the overly wordy rant. I wish you all the best and I hope each of you feel loved, accepted, supported and safe in your lives!
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ChrisJack1 this is the perfect place to rant. We GET it here! I'm so sorry for all you are going through right now. Come here and to the other threads often. I think it will help.
Love and hugs,
Carol
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ChrisJack - Please don't feel ashamed ever. No matter the stage, a BC diagnosis is devastating. Ignore the toxic people. You need to take care of yourself.
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SerenitySTAT, oh yes, I watched the video and I don't begrudge him the swearing, Poor guy.
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Definitely feel bad for both of them. And the healthcare workers. I've read many have compassion fatigue.
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Remember "Flatten the Curve"? It was to protect the healthcare system until we had better treatments and vaccines. Had no idea people would reject vaccines and pull off their masks. We've lost HCW not just to deaths, but burn out.
https://twitter.com/FordJohnathan5/status/1425972104881741824?s=19
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ChrisJack - so sorry you went through all of this. I think your mom was trying to make you feel like it wouldn't be bac and wanted you to be happy and healthy in the weird way that moms deal with stuff with their kids.
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Angry is not the right word, but I just need to express this somewhere: got a chemo port put in when I had surgery last week, and the thing still freaks me out. It did mostly stop hurting so much finally, but I can't even stand to look at it. Am I ever going to get used to it? Sorry, just venting my freakout. I do know it's going to be very helpful down the road soon.
ChrisJack, I'm so sorry. You deserve empathy for what you're going through, not more stress and dismissal.
Jason - yes.
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AMG2, I think responses to the port vary and are deeply personal.
I like the way it looks and it doesn't bother me but your feelings are yours and valid.
Btw, I use topical lidocaine to numb it before access. I've done it without numbing and it's fine, but I'm just, why have pain when I don't need to....
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Moth, thanks for that tip - I too feel no need for extra pain if it can be avoided, so will add lidocaine to my list of things to bring. It has only been there 10 days. I should give it some time.
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AMG2, your doctor or NP should have given you a prescription for lidocaine-prilocaine cream (brand name Emla cream). Get some and put it on an hour before port access. Don't rub it in, just glob it on thickly and cover with a 2 or 3 inch square of plastic wrap (Saran wrap). I understand your feelings about the port. I thought mine looked like a snake, and it took me years to not hate it (even though I did appreciate being spared vein searches). But eventually I got used to it and now I don't really care.
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I made a quick silly reel about Emla cuz I love it https://www.instagram.com/reel/CQ4Bn_tgZBH/
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AMG2, it's ok not to like weird stuff sticking out of your body. I had a port for initial BC treatments. It was very high up and showed unless I wore high neck clothing. I don't mind people knowing I have BC, but I'm not one to advertise by showing that or a bald head. Hated the port. After seeing others in infusion room trying to get veins to pop out so needle could be inserted, I had to say it was good to have. I did lidocaine & saran wrap each time. Soon after rads it was removed! I only have 1 inch scar remaining, which over the years has blurred to nothing. Hated the thing, but glad it was there for chemo.
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I was a nurse 20 odd years ago. For 20 odd years. I couldn't take the stress and I was losing my empathy towards the people I was in charge of helping. I am now a hygienist and really like my job as I see one person at a time and get to know them and their families. This in response to Serenity's post. I am SO thankful I am no longer "on the front line in healthcare." My DIL works in a trauma hospital (level 1) and is getting so burned out. Covid was slowing down but then came summer with accidents, gun shot wounds etc. She puts people to sleep before surgery and intubates when they can't breath on their own. I haven't seen her in a year . She is Canadian, living in the US, married to my daughter.( and for those that wonder, no she did not marry my daughter for citizenship, she all ready was) She hasn't seen her family in almost 2 years because of covid. I am so sick of Covid, Cancer. A high school friend was recently dx. ,with breast CA.
Chris Jack, my heart goes out to you. Bad enough with the dx but then all the BS you are dealing with. Rant all you want my friend.
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I will have to remember next time I have a medical emergency to ask if the doc treating me if he/she is in my insurance network! Ugh. Another bill forthcoming which is over and above my max out of pocket that I’ve already reached for the year. ER doc who I saw for 5 minutes not a network provider. My mailbox is just full of surprises!!
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Here is my rant: I know it isn't a big deal but it hit me yesterday. I'm three weeks out from single mastectomy, still sore so I can't wear a bra. So what the He** I am I supposed to wear? When I'm at home, no bra, usually pj's or tshirt. Well, I need to get out for appts and start going back to office (I've been working from home). I tried wearing a coobie bra one day and I was sore, for MO appt yesterday I wore no bra, but had to use a scarf to hide the fact I only have one boob and no bra on. It's hot and humid here so the scarf was no fun. I wanted a DMX, but surgeon said with my type of cancer, he did not want any delays. I know I need to be patient and eventually I'll get some kind of fake boob to put in bra, but I just want to look somewhat normal and be somewhat comfortable. I am grateful I am alive and I got PCR, but this one boob thing is making me irritable, my step daughter says, "you can get a boob job". Whatever. I know I need to be patient and heal, sometimes it is something small that breaks that camels back!
Thanks for listening!
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Nature Yogi I had a single and rarely wear a bra even when I do have to go anywhere.. I have gotten used to wearing clothes that you really can't tell. A tank with a shirt over it even open or there are blouses that cover that area totally. No one knew when I was working I was not wearing one.
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ChrisJack: rave and rant on, Sister. What a load of crap being dumped on you. Wow. Olympians are flat chested because they are all muscle and have no fat. How is THAT supposed to make you feel better.? Your brother needs his selfish self-centred ass kicked. Please yourself - not your family or men. WTF? To put a spin on Germaine Greer's quote "You need your family like a fish needs a bicycle" We are here as best we can be.
AMG2: I wish my port didn't stick out so much. If I was fatter would it show less? I don't find the poke during accessing it to be all that bad. Ouch and it's over. I don't feel a need for Emla. Guess I am lucky. I would rather have a port than all the warming up the arm, poking/jabbing/rubbing that goes on with patients getting an infusion in their arm. Creative scarf wearing helps hide it. V-necks are problematic. If the material is thin enough, the port bumps through. I am trying to get used to wearing a crossbody purse over my left shoulder after having purses over my right shoulder for about 50 years. My newest purse has a wide strap and it rubs and presses down on the port and that hurts. Mine looks like I have a bumpy bottle cap inserted under my skin
ctmbsiskia: Go back a few posts ago and see my rant about USA medical insurance woes. Yes - we have some issues here in Canada but I will never get a surprise bill or have to see if a doctor is in my "network" Fight fight fight to get universal health care. It is NOT SOCIALSIM, it is human right.
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My port has been in for 9 years. I don’t want it out. It doesn’t show, I wear what ever in tops. No scarf, too hot here. It gets sprayed with freeze spray for flushes, I don’t feel a thing.
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spookiesmom,
My port is 10 years old and I never had chemo (long story).I did use it for two years for Aredia (an older bisphosphonate not used much anymore) and it's been used in lieu of IV's for other things. Mine is also not visible unless I'm wearing spaghetti straps which doesn't happen much at age 65. I have a Bard Power port, so if you look closely you can see the three palpation bumps arranged in a triangle. I don't know why surgeons sometimes put ports in a discrete location as opposed to a visible one 🤷🏻. .
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exbrnxgrl: Yeah, mine is a Bard power port as well. It looks like a tiny alien ship with the three bump triangle.
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