STEAM ROOM FOR ANGER
Comments
-
Soooo...I was diagnosed 2 days before Christmas and I've pretty much been glued to this site ever since. I haven't posted much but I just want to give a shout out to all of you who do, it makes me feel so much less lost and alone with this horrible disease. With all the BS that comes with BC, it's good to know we have each other.
So for my rant of the day, where to start? First off, I told a friend who knows about my diagnosis that I'm getting my hair cut next week, and she said with a straight face.."But aren't you getting chemo?" I had to visualize myself kicking her to keep my composure...I just can't wrap my head around how insensitive some people are.
Ok then while I'm anxiously awaiting my Oncotype score and follow-up with my MO to find out the final verdict about said chemo, all anyone wants to know about is the state of my boobs, such as "Do you regret not getting a mastectomy?" or "Do you think you'll go back for a mastectomy later?" like that's a cure. I'm 4 days out from my lumpectomy BTW and scared sh##less about what treatment will look like since they found a surprise micromet during the SNB.
0 -
Odyssey, there are two recent studies showing better overall survival with lumpectomy than with mastectomy so all your responses can be A) this is really none of your business or
my medical team is following the absolute latest in evidence based medicine and I need you to leave this in my hands & not undermine my decisions. Then you can drop kick them but it's optional. Or you can imagine drop kicking them...
0 -
moth - Thank you and exactly! It's so hard to know how to respond in those situations, especially when I'm caught off guard. Your suggestions are helpful, next time they come at me with stupid questions...bring it on!
0 -
Ooh, I vote for drop-kicking. It sound like a good combination of vengeance and exercise.
I had a micromet and my Oncotype came back low enough to dodge chemo. So, it can happen.
0 -
Alice - Thanks for the giggle: I’m leaning towards a good drop-kick myself!! That definitely sums up my mood lately. Thanks for sharing about your low Oncotype, I’m hopeful that will be the case for me too
0 -
We've all had the experience of fielding nosey, insensitive questions. In the beginning I spluttered and dodged and evaded questions I found painful and didn't want to address. Finally I learned to look at the asker directly and inquire calmly, "why do you want to know?"
Now that I'm a long ways out, I realize people weren't meaning to be offensive. They were curious and knew nothing about breast cancer treatment, or the fact that their probing questions caused me anxiety.
0 -
I’m sorry for what we all have to go through, no matter what stage, it all sucks. I’m here to rant. If it’s not one thing, it’s another. Wednesday I was so fatigued I could barely keep my eyes open. Thursday I had loads of energy and planned to do lots of things after work, but then I get I get the shits. It’s not bad enough to take Immodium and end up with the opposite problem, But it’s enough to make me want to lay in bed, and I have to eat BRAT foods. So today I have loads of energy again, but once 6pm comes, here come the shits again. At least I got to make the soup I’ve been planning before it started up, but now I can’t eat it. BLAST THIS DISEASE. I am grateful to have energy and be able to work, and eat anything at all, but really. Just pissed off right now and this is the place to rant.
Speaking of off - comments, a coworker said I’m looking so slim and nice. I know she means well, but if she understood the why… what it feels like to not want to eat anything, to cry before entering a restaurant and just going home, to be worried about the next time treatment causes me to lose my appetite completely. The friendswho were there for the restaurant cry know better. They just tell me I need to eat more. Yeah, I’m trying.
0 -
Lissalou, I am so sorry to hear about your struggles I don’t think people realize how difficult breast cancer treatments can be and all the resultant pain and side effects of treatment. It sounds like you have had a lot of additional stress which just compounds things. I have recently been struggling so I returned to this site recently aa I feel like people on this site “get it”. Sending you positive thoughts and gentle hugs.
0 -
Kikomoon, I’m so sorry you’re going through this. I wish I could say something to make this situation less stressful and frustrating for you. I’ll be holding you in my thoughts.
Hope you can enjoy your soup this weekend (((hugs))
0 -
I'm so upset and fed up right now. My health care costs are over $1,000 per month out of pocket and are unaffordable to me. I would have been in the red as far as food and utilities if not for the stimulus checks last year because almost all of my regular income goes to rent and my insurance premium, which itself is about $900 per month. The lupron is about $800 a month on top of that, which I don't have. I was originally approved for assistance from my provider which cut my $6,000+ bill down to $800 which a relative was going to pay but after my bill jumped back up I discovered the the financial assistance was revoked without notice because they had not received the $800. I had to put $500 of the new charges on my credit card and have to go through the whole application process again.
I have been trying to get on an ACA plan which covers the lupron, and had started an application, but had to wait on certain tax documents before I could provide an exact value for my income so I wouldn't end up owing and losing the insurance if I underestimated. I finally got the information I needed but thought I had missed the open enrollment period as I had not been made aware that the deadline I was given was the federal deadline, which differed from my state's deadline. I discovered enrollment was still open for my state on the last day with a few hours to spare. It should not have been an issue because my application was finished except for the value for my income so I signed in to the website to enter the correct value, submit the application and choose a plan. However, the prompts kept taking me in circles and the option to submit the application and choose a plan never appeared.
I contacted enrollment assistance and left my number for a call back. Meanwhile I found another customer service number, which put me in to a hold queue. While on hold, I received the call back from the enroller, which I left the queue to take. The enroller, however, encountered the same problem that I did. The prompts on the website took her in circles and she had no way to submit my application. Apparently this is an issue localized to my account (of course) as said she had not encountered it with other accounts.
We realized we would not be able to make the open enrollment deadline but she said that since my application is already in the system it should not be an issue and she would work on resolving the submission issue in the morning and to let her know which health plan I wanted. However because I can't submit the application, I can't see which plans I actually qualify for, making it difficult to know which plans to research to ensure I choose one that gives me the coverage I need.
At this point things weren't urgent. I had checked with my current insurance company about any rate changes on the horizon and the rep I spoke with said she had not been informed of any. I figured I could find a way to make keeping my current insurance work for another year if I really had to but that idea collapsed when I received a letter from them today informing me they would be raising my premium to almost $1,100 per month starting in April. That is not feasible for me.
I tried again this evening to submit my ACA application and choose a plan but apparently, as it turns out, having an application in the system does not, in fact, keep the open enrollment window open. I don't qualify for special enrollment because I am not pregnant. There used to be more qualifying categories but this is the only one the system lists...maybe when I have to start skipping the lupron and by nothing short of a miracle. So the system directs me to my state's version of medicaid, which I also don't qualify for, and couldn't use anyway because none of my providers accept it, at least last time I checked.
0 -
WC the efforts to ensure adequate insurance coverage are stupefying. It just shouldn't be this complex. It is especially difficult when you are in treatment, or are suffering the after effects of treatment. It is like you are having to wage war on two fronts - your health and the health bureaucracy.
0 -
Rah2464:
It's crazy. A few months back when I originally intended to apply I was working with an agent who recommended a plan for me that didn't cover one of my doctors (my MO). I pointed this out to her and she told me it probably wouldn't be a problem! Yes it is!
0 -
lissalou:
I'm so sorry to hear about your sister. It must have been a horrible shock. Feel free to strongly admonish your husband and son. They should put their differences aside or at least take their feud behind closed doors to be supportive of you right now. I've never had a cystoscopy but the experiences I have read about having them while awake range from tolerable to painful. Some patients have mentioned they inject a numbing agent up the urethra but I don't know if that is standard. I think you should try to discuss your concerns more with the urologist and if you are more comfortable having it done under sedation or anesthesia it should be your right.
0 -
Odyssey, people who have no clue about breast cancer think they "know" things and may mean well but sometimes they are clueless. You make the decisions that are right for your situation. All of us are different in our choices in what we choose as well. We just get it. Vent away and ignore anyone who is being dumb.
0 -
ok, random rant here. My insition is bugging me, i need to get up at 5:30 tomorrow, I finally almost fell asleep, and they start very loud emergency road work right outside my window at 11pm!!!!!! Ok rant over. Thanks, I needed to scream.
0 -
Dancemom, that sucks! Emergency road work at 11;00 PM??? I’m so sorry. I hope you get some sleep and your incision stops bothering you.
0 -
thanks sunshine!
0 -
Wonder if burst pipes? That is going on here and they seem to have crews working all the time to get them replaced during our recent bad storms we had.
0 -
I spent Friday night with no power. It got down to 45 in the place. I was ok with extra blankets on my new wonderful mattress my kids bought me but when I woke up and power was still out I almost panicked about how am I going to get temp heat going to not freeze pipes. By that time though the utility truck was in my driveway and I was brewing coffee and the heat was on by 8 am. Phew
Daughter came Saturday. Spent the afternoon and evening with my son. Long story. He’s doing ok for now
Went to the dentist today. I put off stuff due to covid and other medical expenses so here I go again trying to figure out my medical and living life budget. I have some money and I’m working so while I try and budget I think wtf? It’s only money and there’s no guarantee how long I’m going to be here so spend it! It stresses me but if I want to book a 300$ a night room for the experience I’m going to do it!!! Daughter and I were starting to plan our summer road trip and she thought it was too much I am proud of her for being frugal and paying off her students loans by age 35 but…..we have been doing her Dave Matthews Band roadies since 2016 (longer for her) it’s only money! Can’t take it with you and look at the memories we’ve have! I hope she comes around She’s upset I’m spendingGo to primary doc Wed. insurance approved Prolia so also getting another shot That day too. Will try and figure out the costs for dental and medical. Then my 1st year filing taxes as single/widowed. I hate this!!
You all have been my rock. Really appreciate you listening. Thank you! Steam room!
0 -
Does anyone get so angry about all the MBC commercials on TV??? Don’t they think women with BC or their significant others would like to relax and watch TV without being constantly reminded about it?? It’s seems like the money they spend on advertising could go towards research….
0 -
Agree. They act like all those people are happy and "living life" and it is not realistic at all. You never see people feeling ickky from the meds and tired and worried and ut trying get through each each they can.
0 -
ugggh runnergirl YES, we get so annoyed with them as well, let out a big groan when we hear one. So tired of all the constant marketing in general -buy buy buy, eat eat eat, drink, drink, drink! We started muting all commercials or just putting on tv series on Netflix.
0 -
I get them on Instagram. I guess I just need to keep saying "Not Interested".
0 -
I thoroughly dislike all prescription drug commercials so the ones for bc drugs don’t bother me any more than they all do, and I am stage IV. Whether the drug is for bc or any other illness I wouldn’t hold my breath for commercials which feature patients dealing with se’s as that’s not the nature of advertising. I just wish they would get rid of ads for all prescription drugs.
BTW, I actually do look like and generally act like one of those happy, just livin’ life people with mbc. It is not common but there more of us as time goes by and yes, some of it is because of those drugs. Hate the ads but having been dx’ed before those drugs were approved, they have added precious time to the lives of many with mbc.
0 -
exbrnxgrl, you are a lucky one to be so normal like the ads. I have my moments. Yeah I'm sure they wouldn't get very far showing someone running to the toilet with explosive diarrhea, vomiting, lotion-ing up our cracked feet. However, I will gladly welcome new drugs to keep it up, despite all my complaining
0 -
I agree about not liking any of the prescription drugs. No one should have to be reminded about their diagnosis while trying to relax. I just don’t understand why it’s allowed. Other countries don’t advertise drugs in TV….
0 -
my problem with the ads is "hey mom, isn't that the medicine you take?!" "Hey mom, that medicine is for cancer too, why aren't you taking that one?"... Why does an 11 year old need to know this? (And dh is worse. Do you take one of these? It says its good.)
Also, I too could be happy and relaxed and not tired like that if i didn't work, take care of a family, look at my dirty house, etc...
0 -
dancemom,
That is precisely why I dislike any and all prescription drug commercials! And for those without bc there are the annoying ads where you can’t quite figure out what ailment they’re even addressing but don’t forget ti ask,your doctor if Skrewitol is right for you! 😉
0 -
But don't take it if you're allergic or have X, Y, or Z conditions! Like, how is a person supposed to know if they're allergic, especially if it's a new drug? And some conditions they list are hidden types. I wonder how much time is wasted in doctor's offices by patients asking for these drugs, and the doctor having to explain why it wouldn't be a good idea.
0 -
wrenn: The amount of prescription drug advertising in the states is mind blowing…. So many commercials for them…. It’s nonstop.
0
