STEAM ROOM FOR ANGER
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thanks bcincolorado! I do think a problem shared is a problem halved
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I am so glad to have so many friends to turn to. I am speaking of the ladies who post here. I moved away from home years ago and then moved back after many years. Found/knew I had lost my high school friends and mainly rely on family for friendship. But I don't want to keep on and on about my feelings with them because here I can cry in private .With your kids you want to down play the dx. Today I got upset at work-- I have worked there 22 yrs and wanted to put some vacation days in over the summer. Bosses wife said "don't put anything in the book unless I approve it." I know someone has to cover for me BUT WTF. I came back early after surgery for that reason(coverage after my surgery) and I arranged to switch shifts with my co workers while I had rads. It just struck me that they couldn't give a rats ass. I did start crying a little later when I left for lunch.( Can't cry but so much cause I look like shit after) I don't blame anyone for posting whatever is going on in your life because to me this is a safe place. Ctmbsitka we are all with you
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I recently made a trip to Dallas to see my brother and his family. It was a quick trip, but we spent several hours together. Not once during those hours did anyone ask me about my health. Not once did anyone ask me about the past year and how I had coped. Not once did anyone ask me about my plans for the short or long term future. I did not want our time together to be ‘all about me’, but some mention of it would have been nice. I did spend time alone with my brother where I inquired about his recent health challenges, but he did not return the favor. My assumption is that I looked ‘normal’, so people felt there was no need to discuss anything. Maybe they think I am ‘cured’! Just one more reason people need to be educated about MBC
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runor - thx for letting me know about the ownership thing. He wanted to just transfer it to him, and the clerk said it would require new plates & I put my foot down on that. I have park spirit bear plates, I like my number, I'm not changing. Would just adding him have required a change of plates?
kid1919- unsupportive work people just suck.
jcslibrarian - that is SO weird I can't even imagine it.
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Librarian, I talk to my 36 yo son every week. He never asks. I think WTF? Then I think, how would that conversation go? He asks, "how are you feeling? How are things going with your cancer?" I can say, oh, fine. Doing ok. Or I can tell him about tumor markers, ANC values, the drugs I am on and might be on next when I progress. How soon before his eyes glaze over. No one understands where we are but us. The information we can give them is either meaningless or too detailed to be meaningful. I got a delivery of letrozole a few weeks ago. DH asks what that drug was. I told him letrozole. He said what is that for? Even DH doesn't know the main drugs I am on and what they are for. Maybe that's just mine. I know there are husbands that are more involved. It took me years to get familiar with all this junk. No one in my family is willing to do that.
The short answer I had first thought of to tell you is that people like your brother think that you don't want to talk about it. Given the above, that's exactly right. I don't have the patience or the mental energy to tell you about my cancer.
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I have a sister who would tell me how worried she was about our brother who recently passed from cancer and about our sister who recently had prophylactic bmx. Then goes on to talk about worries with her 98 yo MIL who has dementia and has never once asked about how I was doing. She sent a “so sorry” text when I was dxed but never called. Her adult daughters had to learn I had bc from my SIL. Both sisters and I went to visit our brother just before he died....she used much of our time focused on issues from childhood that are still upsetting to her. WTF! Even my brother, who died the next week asked how I was doing and what the plan is going forward. There is nothing to do about it other than accept that she is who she is and not to look to her for support. I am sograteful for this thread.
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Librarian, Jaycee, and Yogatyme- YES YES YES !!!!! People just do not understand MBC. We look "healthy"--- not bald, skinny, grey. We aren't puking. Or going to IV chemo treatments (not yet). So we must be cured. I overheard someone I know telling someone else about me---"She had cancer, but it is remission". NOOOOOOO. I have cancer and I am fighting it every day. I am on treatment for it right now.
My family doesn't want to talk to me about my struggles. I go to appointments alone. And YES Jaycee "The information we can give them is either meaningless or too detailed to be meaningful". My friends don't want to hear about my recent ANC or TM's. They think I am being a hypochondriac if they see me in a mask during cold and flu season. (And now with the coronavirus scare, they think I am being chic when I wear a mask). They don't understand those low ANC numbers put me at risk of getting sick and that could be deadly. They don't want to hear that I am reading to educate myself on what will be my next treatment upon progression.
So much stupidity out there about MBC.
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Breast cancer awareness without metastatic awareness is no awareness at all.
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Bennybear, I am sorry you have to go through everything you have. That is definitely a lot on your plate. Glad that sharing here is helping though.
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My dad has a very slow rare motor neuron disease called primary lateral sclerosis. One never knows if he's in ok mood or very down. Being I have anxiety disorder as well as not wanting to "remind" him I just ask how's it going. A general question. Sometimes I just get ok and he won't talk about how hard things are and his mental state like when he says he just wants die. Other times it was a bad day and he spills. He is a little more careful with me because he knows about my disorder but other times he can't help it and I wind up popping more pills after hanging up the phone.
When I was in a psych ward, neither him nor my bro called that week I was inpatient. It was later explained that it wasn't that they didn't care but for their own sanity, they had to step away. That's fine. So we can't know the why unless the person tells you.
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I don't think it's a matter of someone understanding our diagnosis or treatment. I don't think we should have to go into extreme detail or give them the whole rundown from start to finish. BUT... civil society is what separates us from baboons scratching our asses and picking our nose with the same finger. The recognition of the state of the Other, concern for their well being, even if it is only lip service, is the basis for civil society. DO UNTO OTHERS and if not at least frigging ask !! Having someone ask how you are doing is at least acknowledgement that something of import has happened to you. To NOT ask is the same as saying that whatever you went through simply does not matter. It is insignificant. Not worth the expenditure of breath. Your experiences are uninteresting and of no concern. And neither are you.
My brother never called me when he heard I had cancer. In the few times we have spoken since then I ask about his family, his kids and wife, how his business is doing, how he is doing. He asks nothing about my life. When he lifts up his gaze he sees only himself, in all his glory, there is nothing and no one but him so why on earth would he stoop to asking about insignificant me? He lives in a caste system of his own making. He's at the top and then there's everyone else.
So it's not about someone understanding your treatment. It is about them allowing you the dignity of existence, the acknowledgement of your grief and struggle, that is the point of asking. Civil society. It matters.0 -
Jaycee, I hear what you are saying. I can go into the weeds at times discussing my treatment plan. I have a blog for family and distant friends to read that will keep them up to date on what is happening with me. My brother (and my sister) do not look at it. I take that to mean they are not interested.
Runor,I also agree with you about showing interest in others. My brother has never really been able to have empathy for others. Somehow I thought having an end of life diagnosis would be different. Me bad! I will always love him, but will not waste time worrying about his reactions or interest in me.
I think about the chronic nature of MBC and compare that to diabetes, COPD, autoimmune diseases, etc. Are we expecting to be treated differently than others with those ‘hidden’ diseases? We often say we do not want to be judged by the disease, but we want people to always know or ask about it. We want to live many years with MBC, but we want to be able to do anything in spite of it. It’s only been sixteen months since my diagnosis so I am still grappling with many issues. I do gain much information from this forum and am grateful for it.
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Okay this is going to be a dumb rant, but I just have to get it out.
I made a healthy vegan dinner last night of mexican rice, beans, and fajita veggies, and my husband packed the leftovers into lunch portions. Which was great because I prefer to take my lunch rather than spend the time to find something acceptably healthy, or god forbid eat the crap they serve in the cafeteria.
So I go into the fridge this morning, and he packed two boxes of rice and beans, and for some reason stuck all the veggies in one box, then put some older leftover couscous and brussel sprouts on top of it.
Does he not understand the concept of a balanced meal? Grain + protein + veggie. It's a simple concept. We follow it for pretty much every meal we ever cook.
And I'm now irrationally angry about his inability to pack a proper fucking lunch, but it's not because of the lunch. It's because the whole time I was on chemo I still had to do all the grocery shopping and cooking if I wanted to eat nutritionally balanced meals. He was happy to cook, but if he did he just made whatever he wanted, which often would be something like potatoes. Just potatoes. Which he considered an adequate dinner. And it's not that I think just eating potatoes for dinner is horrible...if you're not on chemo. But during treatment I really felt I needed to be eating protein and veggies because, well, I feel like it should be obvious that someone on chemo should be eating well. And he realized this and agreed with it, but still if he was making dinner it would be whatever he wanted with no regard for my needs. So I couldn't rely on him to make dinner and would have to drag myself into the kitchen and make dinner every night, despite being on chemo and still working full time. And seeing the shitty lunches that he packed this morning, when he could just as easily have packed nutritionally balanced ones, brought all those feelings back and made me feel like I can't rely on him for anything. Which I guess I can't, because I cooked the goddamn food and all he had to do was put it into boxes.
I'm so glad we never had kids. That would have been such a disaster.
I'm annoyed with him a lot lately, both for things he does and things he doesn't do. I realize this is giving me a short fuse with him, but I don't even know where to begin to deal with it.
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hapa, ditto!!! I’m doing chemo. My husband lays on the couch and play’s video games on his phone In ALL his spare time. He is 47. He only does something if I ask him and I’m still doing the vast majority of housework and I have 2 kids. And he’s going to Costa Rica on Thursday fishing for 5 days. Really it bothered me before chemo. To be a little fair I’m off work and like to keep busy when I’m feeling ok and he has a decent job. but emotionally I’m empty. I dont talk to him about much and he doesn’t ask.
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Hapa, I'm sorry, but your post made me laugh out loud in recognition. Are you truly unreasonably annoyed? Or are you reasonably annoyed? I have blamed my murderous thoughts on tamoxifen. I think, okay, my female hormones are not being absorbed by my cells which might mean that I have more male tendencies floating around inside me than normal and these male tendencies seem to be telling me to dig a big hole, whack Hub on the bean, shove him in, cover him up. Therefore, one can assume that if another man had been forced to live with my husband and endure the negligent stupidity that I have endured, that man would have murdered Hub LOOOONNGG ago. That Hub is still alive is a testament to my gracious nature and long suffering temperament. If you are annoyed it is generally because you have reason to be. My Hub is also a big believer in one item meals. He has never been served one item meals. No, he gets the meat and tater and greens, the whole deal. He has willingly bellied up to my balanced cooking for years. In return when it's his task to cook he'll grill a big old steak and slap a slab of overcooked, nasty meat on my plate. No tater, no garlic bread, no veggies or salad. Boom. Meat. Eat up. I resent this in a seething way and tell him so. I tell him that if he does not want to be stabbed in the Adam's apple with a steak knife he best NEVER do that shit again. So now he buys potato salad. Okay. Not perfect, but at least it's better.
JRNJ, your post riled my inner man-hater so I felt it best to delete everything I wrote. There are men and then there are boys. The difference between the two is staggering. You have my sympathy and feminist ire.
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thanks runor! I know I’m not perfect but his laziness And ridiculousness drives me crazy. When Baby was born he still fished every weekend. I’m an independent feminist. I’ve gone to every appointment alone except the bmx including when tissue expanders were removed under a local. I do all the maintenance in the house Including all tv wiring and appliance repairs , painting. And he only cooks when he catches fish and serves only the fish 😂😫 but I got my 2 beautiful children near the end of the line at 39 and 41 who drive me crazy but its worth it for them. Although having children late is a risk factor.
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Hapa, my husband's family thinks a balanced meal is potato salad sandwiches. If we go out to eat, Hubby will order vegetables. When I make a reasonably balanced meal, he'll eat the vegetables. But if he has to fend for himself? He won't even nuke a steamer bag of veggies, or eat prepared raw ones. He'll just try to survive on meat and bread. Not even a condiment! I think some guys are missing veggie genes.
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Oh my! These husbands 😳 When I was diagnosed, my DH decided he would go with me to EVERY appointment. He is quite the distraction. At my last meeting with the Oncologist, he talked with him about guitars and I just sat there. DH also does not cook. He even gets frustrated when asked to go get fast food. He has no concept of how one orders thru Grubhub. I have tried to explain how one plans a grocery list, has various food items on hand and makes a meal. He also cannot use technology well other than Facebook. If there is any glitch, I hear my name called as I must fix it. I have always brought in more money and we now live well mainly because of my pension. I did raise my two boys to be different. They cook, clean, work and contribute to their families. Hopefully DH is one of the last of his generation type. Even yesterday I was fussing (nice way to say yelling) at him about his childish attitude. Oh well...too late now to do anything other than soldier on.
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So I had an episode with my food on Monday night. Long day of treatment, bless my daughter's heart she took the day off to be with her Dad and I went over for lunch. Ha, nothing like going out to lunch to the medical center! Daughter also cooked dinner. I had just finished exercise class and I was hungry. About 3 bites into some chicken, rice and green beans-some chicken got stuck in my esophagus. This has happened to me before, although not very often. This is probably the 4th time I've experienced this. It's a bit painful and you just have to try and relax until it comes back up or goes down. Mine seems to come back up, but mostly it mucus or water and just a bit of the food. Felt bad both kids were there to witness this. Daughter was a little freaked out. Hubs was outside and loaded up on steroids talking to the HVAC repairman that was next door so he missed it, thankfully. It lasted about 30 minutes. Skipped the rest of that dinner. I think I ate a piece of toast later. Consumed a whole bunch of water yesterday and I was up all night peeing. I feel fine now except for the fact that this is a symptom. The way I am now, not wanting to be oblivious to my body, I feel the need to deep dive into what the hell is going on. I feel this, but the other side of me (the one before BC and never went to the DR) just doesn't want to, and probably won't. No time, not a high priority, thus another internal struggle. My mother had issues like this and probably around this age. I don't know how common or rare this sort of thing is. Is it as simple as not paying attention and eating too fast? Eating something too hot or cold, or too spicy? Do I go in search of a OTC remedy to help these GI things going on? I also burp a lot and digestion is slower that it used to be and is noisy. At class that day I did attempt a station that consisted of having your feet on the rowing machine seat reversed with your hands on the floor and then sliding up into a pike. Of 4 rounds I only did this 2x's and I rested my mid section on the metal bar and of course I have a small bruise on my belly-LOL. Possibly being half up side down and not cooling off sufficiently before stuffing food in my face was the cause?
Would love to know if anyone has anything like this? It has shocked me enough to make further lifestyle changes. I'm going to quit my wine for a while. I've been doing pretty good with not smoking, haven't bought any in over 2 weeks. Hope I can stay smoke free! I still really want one. Over 3 years of trying, can I finally do it? Looking at my calendar I'm going to miss exercise class on Thurs-dentist. and on Monday-BS follow up. Ugh-hope the bruise on my upper ab is gone by then!
Lori, thank you for your post the other day. I hope you are doing well today. Hubs was twitching his ankles and feet in the chair yesterday, I am going to mention this to the nurse at his treatment this afternoon. Maybe have some Gabapentin or Lyrica called in. We loaded up a pill box in hopes it may help -both he and us can see what has been taking and when. If it's working or not. T minus 36 hrs. for the fun to begin! We also have some cannabis oil if can't manage the pain from these treatments.
Thanks again, everyone for listening.
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ctmbiskia, I was having the same issue with food getting stuck and I finally realized I was having some acid reflux. I took Prilosec OTC for 2 weeks and it seems to have solved this problem. I hope yours is nothing serious.
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ctmbsikia
I've had that happen for decades. I call it "hamburger gullet" because I first noticed it with burgers years ago, but it even happens if I take too large a swallow of water. I just have to sit there and wait for things to settle.
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I used to have the same issue as well after a course of steroids with last brain rads. I took rabeprazole to deal the the reflux which caused burping and sometimes burping up foods from hours before even. I was very distressed by this.
I decided to try digestive enzymes and no longer deal with the digestive issues I used to. I can eat almost everything without any issue. I also no longer have to take rabeprazole everyday or even more than occasionally. If you do not take them, I would highly suggest them. Probiotics help too, but I found more relief for the gastric and lower abdominal issues by adding the digestive enzyme. I take one before every meal.
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JRNJ, runor, Alice, JCS - thank you for empathizing! I didn't have the bandwidth to start another fight when I was in treatment so I just let a lot of stuff with my husband slide. And now that I'm doing better I have time to get upset about it. I had a talk with him a while ago about how unhelpful it was when he told me he thought I was going to die after I was diagnosed, but talking about it didn't make me feel any better and it probably just made him feel worse. Plus, it's not like there was any resolution, I mean he apologized but he also made excuses for himself, so it seemed pretty pointless. So I don't really know what to do with all this delayed anger now.
ctmbsikia - I'm so sorry for all you're going through. I wish there was something I could do to help.
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Thanks for all the suggestions and experiences. The GI stuff continues. Lots of noise and burping so something is out of balance. It's Friday and Lent so I will fast today. Give my whole system a break. A month or two ago I stopped eating most dairy. Felt fine! For some reason (not paying attention!) I did buy some yogurt and ate it all week. Let's try eliminating that (AGAIN) and see if I feel better. It will probably take another day or two to get straightened out. I hope. I also have a slight headache. I did "go" this morning so there's that. Maybe I have a bug but I don't think so. I recently started taking biotin. Only other new thing. I may skip that next few days and see. WTF. I'll figure it out eventually or I may self destruct!
Hubs said last night the stomach cramping was starting so I said please take something NOW and he did. 2 Oxycodones and he was out. Also managed to get the Sena and a Claritin in him around 9pm. This morning he said the cramps are there but not bad. I again said please don't try and tough it out and keep taking everything we have laid out for you. Daughter asked if I am going home at lunch to check on him, but I am so behind at work, I may just call him first. I need to go get gas. I did the grocery store yesterday and drove right by the pumps! Ha
OK-don't even get me started on this corona virus. My sister was going to travel to LA to visit her daughter but has postponed. Our office is preparing for possible remote working. We currently have some project managers out traveling. Once back they are considering cancelling future travel thru April. If anyone one of them comes back and remotely sneezes, I'm outta here! Can you imagine? Hubs going to die of cancer and now I have to worry about some virus taking him out?
My sister in laws mother passed away yesterday. Her funeral is next Saturday.
Lastly, I promise this is it! Have an appointment with BS on Monday. I'm not as anxious as usual, probably because my tests were in Dec, she was in touch with me after my MRI and subsequent bio which was fine so just need to know where I go from here. Are my next imaging tests in December 2020? Am I back to alternating Mammo and MRI? When do I stop seeing BS? Guess I'll find out and then I'll be appointment FREE until June. Yeah
I'll try to come back later, hope everyone stays well through this virus thing. Enjoy the weekend,
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Hubby is doing well but not great. I will go home and check on him at lunch. Has the abdominal pain but he (and daughter and I) has seemed to keep him fairly comfortable. I'm not sure how long he was up in the middle of the night last night, but by the time I got up and saw him hurting he agreed to 2 pain pills. We are charting the amount of stuff he's taken and yesterday he said that was the worst constipation he's ever had. I'm hoping from today on these side effects will start to get better...…..I baked him a chocolate cake yesterday. I spent so much time in the kitchen I didn't get the floors done. It is what it is. I like a clean house but there are times it just has to wait until I get to it.
My GI issues are slowly getting better. Just had some oatmeal and the stomach noises and burping are starting. I will be skipping eating any lunch. It's annoying as F.
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ctmbsikia, perhaps a digestive enzyme would be helpful? I had terrible digestion myself at various times and this last time, I actually tried the digestive enzyme. Just a broad spectrum of enzymes, nothing too expensive. I find it helps a lot with digestion and my diet is fairly high in fat and oil thanks to my addiction to cheese.
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Thanks mara. I did buy some probiotic pills but I haven't tried them yet. I believe the added fiber is helping and I'm getting back in balance. Of course last night I didn't do too well, Friends picked me up and we went to my sister in laws brothers' house to visit (their Mom just passed). A house full of Italians which was loud! We ate pasta and drank some wine. Lots of running around yesterday, looking forward to a quiet evening at home later today. Hubs is doing OK, I hope he's on the upswing. Not much pain at all, just the overall weakness and fatigue now.
Had a BS follow up appt. yesterday. She was very nice. I did tell her about my husband being sick. Well actually I told Amy the nurse and she told her before she came in. So we talked about his treatment and the fine folks that are treating him. I asked her what's up next? She sat and thought about it for a minute and being 2 yrs. out she said 6 months. I was hoping to graduate to annual but it's OK. I'll have to schedule the diagnostic mammo in September and I will see her after. I go back to my MO in June, so at least for this year I'm seeing someone every 3 months. I also need to get a cardiologist and dermatologist into my mix at some point. I missed my last GP appt last fall when hubs got sick, I haven't rescheduled that. It's a lot to take care of yourself.
The exam went OK, and I really don't want to complain, but since this is the steam room I have to say there was a point where I was not being listened to. I have had skin issues since radiation, so just let me believe that the treatment is the cause and shut up! I have a small patch on my chest at present so she asked about it. I told her it's the weirdest thing as it comes and it goes. When the chest clears up the next rash will appear on my arm . I had a blood test just after radiation and that needle caused some sort of reaction that took awhile to clear up and to this day every once in a while it will start to itch and I will get a rash there. Chest, arm, chest, arm, with all clear in both spots in between breakouts.. I told her I thought maybe being stressed brings it on. She did not think so. She didn't offer another explanation other than it doesn't look like cancer! Well, thanks doc. I never worried that it was! UGH My MO saw this rash once as well which is why she recommended a dermatologist. These 2 areas are just sensitive and I feel I had a reaction right when I was at my lowest and they just never fully recovered. That's what I think until someone convinces me otherwise why this keeps happening. My GP gave me a script for a steroid cream that works wonderfully when I need it.
That's all I got. Be well everyone.
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I try to be positive. I try not to worry about things I can’t control. Tonight I’m freaking angry! So I’m going to spew some stuff out and then let it go.
My husband left me for another woman in December 2018. She now lives with him so my kids spend half their lives with her. I hate her and I’m still angry at him. My 14 year old daughter has always been a daddy’s girl so after two months of being mad at him, she’s right back up his butt and treats me like shit whenever she’s unhappy or worried about anything - usually shit to do with him but I cop it.
My mother was diagnosed with breast cancer in November 2019 and had a mastectomy in January 2020. Out of four daughters, I’m the one that does the caring so despite having a business to run five hours away, I was the one that was there to look after her.
While there, I did my own self examination and found a lump. Mammogram, ultrasound and biopsy later and I’m given my own diagnosis. Lumpectomy a week ago and now the wait to see what else I get.
Meanwhile mum has started chemo but there is no one to look out for her because one sister works in early childcare so has been banned from visiting while Covid is so active and the other two sisters have come to my house to “help” me. So I’m worried about mum.
Husband went to the USA for three weeks including the week of my surgery so two kids angry that they miss their week with him and somehow that’s my fault. He now has to self-isolate when he comes home so daughter has been a complete cow to me all weekend because she’s worried about him and apparently Covid is all my fault. Another two weeks with me is such a hideous thought! And her birthday is in that time so she wants to cancel it because having her birthday with me is completely unacceptable. He won’t offer financial assistance while they spend extra time with me because he chose to go on a trip - I’m feeding them, paying for the school bus, etc.
I own a business which is going to be severely affected by the economic downturn. I employ 10 people who may not all have jobs at the end of it. I also own the building the business is run from so if the business suffers, I'll lose rental income too. Let’s add some financial concerns to the heap of shit I have going on!
Today I had to drive her three hours round trip to take daughter to the orthodontist. I’m freaking tired because I had surgery a week ago! But she’s flipped out at me again this evening because his plane has been delayed. Yeah that’s my fault! And I’ve cooked dinner for all five of us including the two sisters who are supposedly here to help because they’re doing who knows what. The dinner dishes are sitting there not done so I guess I better do them but first I must let the dog in and out and in and out because no one else is willing to get up.
Ok, probably enough now. Sorry for the rant but it had to come out
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PMML, that STINKS.
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PMML, wow!! As if trying to deal with your and your moms bc isn’t enough stress. I’m so, so sorry. Husband needs his ass handed to him
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