STEAM ROOM FOR ANGER
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This is awful of me to say and I will go to hell for sure, because my girlfriends have been so patient and so supportive as I flail about like a scalded cat, with no dignity and no composure as I panic over uterine cancer. But today one of them sort of ticked me off. It was not meant to tick me off, but it did anyway. Yes, I am overly sensitive at this time, like a tightrope ready to snap.
Believe me, since this uterine cancer thing came up I have been doing research, looking up documents, reading studies, listening to podcasts and not just stories about surviving, but the science and medicine involved. It's a lot. I have learned a few things. I have learned that pelvic radiation is a dirty bitch of a treatment and the long term debilitating lifetime effects have been vastly UNDER-reported and vastly OVERLOOKED by medical people and in many cases the gained life expectancy is not a clear advantage over the known dreadful effects. I have pretty much decided at this point that I will refuse all radiation. I know...when the cancer god stares me down in that double dog dare of what I will do to stay alive, I may knuckle under and change my mind. But for now I'm thinking if I have limited life left I do not want to spend it pissing and shitting myself in public. I read a recent study in which docs were shocked to hear that at least 80% of pelvic radiation patients have lifetime effects that they consider debilitating and that have in some cases made them recluses and shut ins as the worry of publicly crapping their pants has ruined their life. No doubt. I don't want that. If I have X years left, then quality of life is the big issue, not quantity. I have thought about this. I have looked into this. I have tried to find where they say, all side effects of pelvic radiation are easily managed. You will not find it. Because in most cases it is not true. There is little than can be done.
So today girlfriend is blabbing on about how her friend took radiation and it hasn't affected her a bit and that was 26 years ago! And I'm thinking, you know nothing. You have no idea what miseries your friend walks around with on a daily basis. A sex life that is ruined because her vagina slammed shut? Bowel and bladder incontinence? Digestive issues due to cooked guts? People don't tell these things to their doctors because these are awkward, personal problems and they are finding they are grossly under-reported. But here's my friend, who has not done any research into it, telling me that because her one friend seems to be unaffected, I shouldn't give it a second thought. And it pissed me off. It seemed glib and flippant. It seemed like my real concerns were being brushed aside.
Yeah, I'm tense and bitchy right now. She means to be encouraging. But jeez.
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Nah you're right re the long term impacts. My stepmother, who is the most formidable woman I have ever met, had uterine cancer and along with all the chemo she did (in some trials too but this was in the 80s, so maybe those drugs are mainstream now?) anyway, she did rads, a lot I believe. Her gut's cooked for sure. She doesn't talk about the side effects but they are there for sure. In addition to what you said, runor, she can't have a colonoscopy b/c her gut is so scarred and twisted.
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Rumor, I had uterine cancer in 2008. Endometrial, but it had burrowed in a bit, so technically uterine. I had a thorough hysterectomy and that's it. No chemo, no radiation. A surgery that left me a few stabby spots on my belly, home the next day, and about four weeks off work. Except for a short fight with swelly belly creeping across my lap because I didn't walk enough due to a rotten hip, it was mostly just boring. No reason yours will be any different.
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Edj, Alice, I take comfort in your words.
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Hi Runor,
My mom had uterine cancer. She had a hysterectomy followed by high dose brachytherapy which is a very targeted treatment. External radiation will definitely affect the bowel and bladder but brachytherapy does not at least to the same degree.
Keeping you in my thoughts,
Jane
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Runor- I was diagnosed with endometrial cancer after breast cancer and was much more freaked out than I had been by the breast cancer, cancer was suddenly real with the second diagnosis. My complete hysterectomy experience was much like AliceBastable's. The worst part was injecting an blood thinner everyday for two weeks post-surgery, but even that made me feel like I was doing my part. Overall, because mine too was contained in the uterus, it was as if a bag of cancer was completely removed, neatly contained, in a way that is unlike breast cancer. Hope your experience is similar.
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Hello all. I'm a long-time lurker to the thread but need a safe place to vent this morning.
My husband got together with a friend who said he was vaccinated. Yesterday afternoon this man sends a text to husband that he's tested positive for COVID. "What?! You said you was vaccinated." Turns out he was vaccinated less than a week ago with Moderna dose number one.
I am so upset. Both husband and I are high risk for COVID, and this man knows it. Now we get to quarantine, watch for symptoms, and cancel doctor appointments for the next two weeks. I can no longer trust this man's character and integrity.
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runor, I'm sorry about the comments your friend made. I think they mean well, or are trying to bolster us up by their stories (so-and-so went through chemo and she never missed a day of work...) It doesn't help, though. They either piss us off by telling us stories that have NO relation to where we are, or they look at us like "Why aren't you dead yet?"
I totally get it about not reporting stuff - I mean who wants to tell your doctor that you can't control your bowels sometimes? It's embarrassing!
On the hysterectomy thread, I wish that I had had them take my cervix at the same time as my uterus. One less thing to worry about. I'll be waiting to hear your report after you see your doctor this week. (I think it's this week. I can't keep things straight in my head.)
(((hugs)))
Carol
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Hershey sorry you are all stuck now! UGH!!! We ad bother of our shots but know enough it takes 2 full weeks after round 2 shots Then you are limited on what you can and cannot do and can only be without a mask around family who has the vaccine or your grandkids who (in our case they are home schooling now because of COVID and doing online classes). Does not mean do whatever you want whenever you want and no mask and no distancing.
Hate stupid COVID and tired of it.
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Another death is coming. Brother in law was put on hospice care yesterday. Liver cancer. This is my husband's sister's SO. They live in WY 2000 miles away. They just sent some pics from UT where they did an Easter family vacation. Looks beautiful out there. I'm afraid I cannot muster my caring self to get on a plane and go out there. Surely I hope the family understands. I can't do it. Spoke to her this morning, she will be taking some time off work, and she has 2 other brothers and their wives that should arrive there this weekend. She has her kids as well. Trust she will have enough support. Huge sigh
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Ctmb, sorry to hear this news. I think any sane family members would indeed understand that you cannot be there. I have stated before that death is private, personal and intimate and if this man is not one that you spoke with monthly and had coffee with whenever possible, then I think attendance at his deathbed is not required . But that's just my way of seeing things. Sometimes family members are so distracted and exhausted by what they are dealing with that out of town visitors makes things worse, not better. I pray your BIL is in the hands of people who make his last days as comfortable and peaceful as possible.
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Thanks runor. Hubs other sister that lives here by me were in the beginning plans of taking a trip out there soon with this family stuff that she wanted. We were going to drive out and fly back. Now, it's definitely not the time for that. It's just stuff, and it's fine just sitting there doing nothing. At least I 'm not paying to have it "sitting there doing nothing" Anyway, I sort of feel like it's expected since we had previously mentioned this, but hopefully I'm wrong.
I certainly understood her not coming to see her brother. You are right, being private is so much better than 1000 people running in and out. If there is ever a silver lining of dying in a pandemic is that I found I actually prefer invite only funeral (we had less than 30) and they were mostly all family anyway. Not having to see some old friend that I didn't care for waiting in a line at a funeral home crying and snorting all over me and my kids telling us how much he or she loved him after we haven't seen you in 20 years! No thanks, so glad it was quiet and much more peaceful.
I'm in your pocket this week and with whatever turns out to be, you know that. Reach out if needed.
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ctmbsikia - sorry to hear the sad news. Family will understand not putting yourself through stress of travel during these times. Hugs
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Thanks. Wonder if the good Lord will give me/us a break after this one? I mean it's excessive deaths although I haven't counted them. I'm not even 60 yet~!
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ctmbsikia, whether or not they understand, it's still right not to travel right now. You're doing all the things right and making good decisions. It's all okay. hugs...
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ctmbsikia, I'm so sorry. Too much death. I completely understand why you don't want to travel there, and hopefully everyone in the family understands too.
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Thank you all for listening and helping me digest this. My sister in law that lives here and her husband want to go out. I’m going over to her house after work tomorrow to help her book flight/car/hotel. That will be 3 of the 5 remaining siblings there with her. She is/was my husbands favorite. I can’t believe they are taking the 2 weeks literally-everyone is different. He is a former Navy Seal. Survived an oil rig accident in the 80’s. Since their brother and mother just died last year the dynamic of this family has changed. I am pleasantly surprised it has been for the better. My husband could and didruffle some feathers. I’m happy through their turbulent life as kids they still stick together at times like these. I feel I’m off the hook but can still be supportive.
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ctmbsikia I am so sorry to hear. I have a dear friend here who lost her mother in law recently and the funeral home did an online memorial thing so everyone could participate since they was no way everyone could make it there with COVID. That way they could all participate and even got to contribute themselves through a "zoom" thing they set up and share thoughts of her as well. Maybe something like that can be done for your brother in law in Wyoming?
I know Wyoming is different too since my daughter and son-n-law live there and often do not have all the services available to them as if you were in a "big city".
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I'll just toss this out there while I'm venting.
I hate that being "of a certain age" seems to make medical personnel assume that somehow I'm demented or having trouble ambulating. I was asked no less than 5 times yesterday if "I had fallen in the past week." My followup visits always state that I am "alert" and "respond appropriately." Maybe I should stare off into space and talk to my invisible friends, or doze off while they are speaking.0 -
LW422, after I finished chemo, my weakness was so great that it was a thoroughly appropriate question for me. I never fell down, but I sure did SIT down quickly several times. So perhaps it has nothing to do with your age and a lot more to do with your stage of treatment.
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LW, I think those are standard questions they have to ask everybody, and observations they have to make, no matter what age. I go to the cancer center three or four times per month and always have to answer these questions at least once. One time I had fallen but I explained that I was not a fall risk, but a stupid risk. I climbed onto a low wall to pick fruit and then jumped down when I realized I was losing my balance. I landed on my feet but them stumbled over a piece of wood that was on the ground. This was before completely recovering from a procedure under anesthesia. Fortunately I was not given a colored wrist band labeled "stupid risk".
But I understand your wanting to vent about it. Do let us know what happens if you decide to try the staring off into space thing.
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they're screening for everything incl metastatic recurrence. Muscle weakness, bone frailty, neurological symptoms, psychological well being ...these are part of an assessment and every good health care provider should be doing them. Cancer pts remain vulnerable forever
one of my kids is mad/sad and I'm mad/sad on their behalf. Stupid world threw up a roadblock in front of them and it's not a major thing in the big scheme of things but a huge stressor for the kid
and highlights - alas - some weird perfectionism and over-responding to obstacles
So i can feel bad about doing a bad job as mother too I guess
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ShetlandPony: I had to laugh about the "stupid risk" bracelet and wonder what color it would be? I am afraid there would be a fair number of these distributed to patients when you hear why they have come to the ED. So you would definitely not be the only one wearing one. Thanks for the laugh.
Moth: not a bad mom, just a caring one.
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Yeah, I'm just venting. Stupid cancer.
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My DIL is Canadian but lives and works here, married to our daughter. She said CA health care stinks... long waits etc. Some people come to WNY for their care but with the border being closed.. On the other hand my SIL who has lymphoma went to the ER today (her and my brother have covid) was having trouble breathing, fever, cough sat 8 hrs on a stretcher. They did a chest xray and lab work but never came back to give her the results. She ended up walking out. Even after telling them she was leaving they didn't give her any results or ask her to stay. So WTF.
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Let me preface this by saying that doctors and nurses are not the problem in Canadian healthcare. They are as trapped and restricted by the system as the patients are. It's our effing stunned govt that is the problem. The people who 'run' our system are not focused on the patients. Canadian Healthcare is the equivalent of our country whipping out its penis and showing everyone how big it is. Can't use it for anything, can't piss with it or make babies with it, but ain't it big and fancy? We pour money, MASSIVE AMOUNTS OF IT into this useless pecker and we have the best pecker in the world and everyone wishes they had a piece of junk like ours in their pants....Canada wins!
Wrong.
When you sit in an emergency room for HOURS waiting to be seen you realize this isn't actually an emergency room. It's just a room built on a hospital. I have listened to the news for a fucking year now howl about full emergency rooms and ICUs. They are ALWAYS full ! Has anyone done research into what the normal hospital capacity is at any given time? I have NEVER walked into the local hospital where there aren't patients stuffed in hallways and the ER wasn't chock full of people. Never! This system is fucked beyond repair. My entire cancer journey I have had to be be my own advocate, rolling my own ball along. Push for appointments because this system ALL THE TIME forgets and loses people. I waited 6 months for a bladder ultrasound when I was peeing blood. SIX MONTHS!! I needed a blood test done at a specific time and sorry, can you come two months from now? Uh...no I effing can't. And now this uterine cancer bullshit. It was March 27 when I showed up bleeding profusely and it will be April 20th before the scope and D&C are done and that's considered a rush job! That's a 3 week wait and that's called being fast tracked. Then I will wait another 2 weeks for results, also called fast tracking. Not only does this cost me in personal agony and mental anguish, but we have paid and paid and paid since we were working teens for the privilege of this useless cock of a healthcare system. We need to fire every govt official and person with a 'degree' that is sucking up time, space and money administering this system and we need to get a bunch of housewives who juggle kids, house and work in there to organize and streamline the shit out of our healthcare shitshow. And people who tell you that Canadian healthcare is free are out of their fucking minds ! We are an enormously taxed country. We are taxed before we get our paycheques, we are taxed at the til on everything we buy and if we save $10 and it makes interest, we are taxed on that too. There will be people who say they have had good service in our healthcare system, well bully for you. I m happy it went well, but for every one who gets good, timely service, there are 100 others who did not, and we need to think those 100 people matter as much as everyone else.
Free healthcare is the national lie. Good healthcare is also a national lie. It might be good, but only if you get it. Many people head to the States for treatments that are newer and quicker than here. That has to tell you something. When you can stay home and get something for 'free' or skip the line and pay through the nose and you choose to pay through the nose, that's because what's offered at home is a pretty shitty deal. I am pissed off with the people who administer and control our 'system'. Shit rolls downhill and plainly those at the top are seriously full of shit as evidenced by what the peons have to deal with. Rant over.0 -
runor, I am so sorry you are waiting and suffering mental anguish. Wishing you well on the 20th!
I don't know if this will cheer you or anyone else up, but I went today for left side mammo and us, and FINALLY got a normal score! The reading doc even came in to talk to me. Sometimes they just let the tech tell you. They asked if I worked in radiology from my questions asked about the findings today. I told them when you're a cancer patient you should probably learn the system. I am home and my report is already in the portal.
Are you ready? Wait for it........the word resolving is in there!!! A Birads 2!!!!!!!!!!
The appearance of the surgical site is unchanged from prior examination reinforcing the previous impression that the asymmetry is related to normal postsurgical evolution.
Typically benign calcifications are present.
The left breast is otherwise unremarkable.
Targeted ultrasound is performed in the 11:00 position left breast at the site of prior surgery and mammographic concern.
The findings demonstrate a resolving pattern when compared to prior exam There is evidence of scarring. Adjacent to the scarring, there is a 0.8 x 0.4 x 0.7 cm collection consistent with a postsurgical seroma. It previously measured 0.9 x 0.9 x 0.5 cm. The lesion is less complex than on prior examination. The findings are considered benign.
I'm sorry, I know this is the steam room. Hope you don't mind me sharing some good news for once. I see the BS on Monday, I hope this absolves me from having to do the 6 month follow up MRI. That's my question, as well as how long until you release me? She's a wonderful Doc, she did say it would get better. Seeing both the MO and the BS in year 3 is a bit much. The radiologist I spoke to today felt the same. Thank you, now back to venting away...............................
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