STEAM ROOM FOR ANGER
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BlueGirl, please don't give up all that stuff (trip, meat, sugar, dairy, alcohol). That would be really sad. We don't know how much time we have left and I, for one, will not increase my suffering in that time. We will suffer enough. More than enough.
I've been meaning to get in this thread and vent, too. I'm really tired of the word "pipeline." People may still want to believe that there are many treatments out there just waiting to fall in our laps but I am totally convinced that there are not. Unless you go for something with really bad side effects in a trial. And questionable efficacy. I refuse to fall for that. The current healthcare system, hospitals, doctors, and other cancer providers have a nice little system going that keeps them rich and respected and powerful so why upset the apple cart? This system works for them. The fact that it in no way works for us is not relevant to them.
It reminds me of Lucy and Ethel in the out of control conveyor belt episode.
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Jaycee, I love that episode. That and the Vita-Meata-Vegamin episode.
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JayCee--I love your post and most heartily agree.
As for my rant, I had a "surprise" uterine biopsy yesterday and I'd like a giant kick in the nads to whoever invented that medieval test. That is the most painful "little pinch" I have ever felt in my life, and after cramping all afternoon and most of the night, I'm not a damn happy camper. Why does the damn treatment always hurt more than the effing disease??
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LW422, I was lucky that the gyneologist who administered my uterine biopsy procedure gave it one quick try in her office and then checked me into the outpatient clinic so I'd be conked out for it. At least she believed in biopsies before other treatment. After months of horrible bleeding, the other gynecologist I'd been seeing (male department head) was sure it was just middle-aged menopausal issues and was ready to do an ablation to stop the bleeding. I saw the female doctor on a day he wasn't available, and she said she would never just assume anything without more testing. She was right, it was cancer. Women of a certain age get their concerns minimized way too often.
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LW, my uro-gyn was a critical care nurse before going to med school. When she did my uterine biopsy in her office she very patiently used local anesthesia and the procedure was as comfortable as such a procedure can be. So sorry to hear about your very opposite experience.
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AliceBastable your story reminds me of my then gyno who was not willing to remove my uterus (at age 40, had two kids, also I was an adult!). He wanted to do an ablation and I was very much Not Interested. Cook my uterus when I was already over bleeding 99% of the time? NO THANKS. He told me that wasn't normal, to want my uterus removed.
I endured that bleeding for another three years and then my husband happened to see how much blood I was losing and begged me to find a different gyno. I did, he absolutely agreed with my decision to remove that thing.
Man I hate it when any doctor, but most especially male doctors, discount and dismiss my input. I know my body, I've had the dang thing all my life.
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This thread triggered a very unpleasant memory and now I'm boiling angry all over again. Years ago I saw a male gyno that I had never been to before, but had to consult because of insurance issues (and I'm sorry, I know I'm being sexist, but I don't believe men should be gynocologists). He was rough, brusque, and treated my lady bits like he was handling a car engine. He determined a uterine biopsy was needed and had me sign a consent while I was still in stirrups (I should have climbed down and run at that point). I'm pretty tough, but he shoved the biopsy instrument through my cervix and I screamed. I think he was whistling as he finished up and left the room. I was sobbing.
If a uterine biopsy is ever necessary in the future, you better believe things will be different. It's my opinion that historically, and for too long, medical professionals (particularly men, and again I apologize) have thought of women's genitalia as generally immune to pain and not worthy of the privacy and consideration as men's.
Whew. Rant over. Sorry. SB
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Don't apologize. Your rant is spot on IMO. Take mammograms. Does anyone honestly believe that if men had to have their scrotums placed between two sheets of glass and compressed to practically nothing that that test wouldn't be changed? Because I do not.
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You can be damned certain if men had to endure anything like a mammogram, that machine would have rounded corners, extensive padding and would be heated.
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from a long time ago.0 -
I understand some tests and procedures are painful, and sometimes we just have get through them. For me, though, it's the attitude and approach of the medical provider. I've had mammograms that were uncomfortable but tolerable because the technician was gentle and compassionate. I've had others that were just awful--and it was the technician who was responsible.
A uterine biopsy is painful. WebMD says it causes "mild cramping," and I call BS on this. However, if I'd had a compassionate physician who explained the procedure carefully, used local anesthesia, and was concerned for my comfort, it would be have been unpleasant but bearable. It would not have left me with memories of pain and humiliation.
In the Annals of Urology, a professional journal, this quote: "Anesthesia administration during prostate biopsy is compulsory." But it's OK to stick a biopsy probe through a cervix without local anesthesia? Not for me. Not ever again.
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SB--I was telling my sister-in-law about my uterine biopsy last Thursday (that I am still wearing a maxi-pad for today). She told me that when she had one a couple of years ago, she actually passed out on the table from the "slight cramping." Something needs to be done about that ridiculous torture. I will NEVER submit to that again without being sedated.
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Not to mention that everyone has a different level of pain tolerance. DH has a high one and I do not. I fainted at my biopsy to find my cancer!
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Many years ago, DH had 12 “cones” taken for prostate biopsy. Through his tears, he said it hurt like hell. No local used. Was a male urologist.
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How rude and insensitive!!!! Doctors and techs need to realize we re not all "brave" and strong and some are big needle phobes!
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I have had 4 D&Cs for each of which I had been initially offered an endometrial biopsy. I always chose the D&C because as it was explained to me, it was more thorough and I would be sedated. Even though the sedation meant I would have to arrange a driver, it had to be scheduled further in advance and was outpatient hospital instead of doctor's office. D&Cs must cost significantly more than in-office endometrial biopsies, so insurance might be an issue, but ask about a D&C as an alternative if an endometrial biopsy is ever suggested to you.
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BlueGirl.....Got a kick out of your comment re:Grand Canyon trip. With my 1st diagnosis, DH & I stopped @BS on way to Lee's Ferry put-in. Told her that if 3 weeks delay was critical to my prognosis that I better take advantage of the reservation as I wouldn't get another chance anyway. 17 glorious days on the river! On the way back from AZ, stopped for pre-op, went home to unpack/pack, hosted dinner party for friends to tell them, and returned 2 days later for surgery. Didn't tell anyone I met on the trip, they probably thought me staring @river flowing was just a pensive & thoughtful person. HA! The rapids are massive & exhilarating, but just as wonderful is the float to Diamond Creek, looking back upstream and remembering where you've been. Then at the take-out you have to leave the "real world" and join this one.
Have a glorious trip! Cinch up that PFD, if you easily breathe, it's too loose. Eat well, but food & drink is to enjoy & socialize. Make a plan w/MO and enjoy what you can do.0 -
Spookiesmom, yup!
I come from a family where every male has had to undergo multiple prostate exams and biopsies. They are awful. It's not because we are women that we have to undergo these horrible procedures. It's because the idiots in the medical community haven't prioritized the need to find a better way. And because there are doctors everywhere who don't give a damn about our comfort. And that applies to women's procedures and men's procedures.
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The the physical pain before surgery was torture. So glad I was unknowingly of what was happening until much later. That was the beginning of 2018 I had no idea of what was to come.
I lost my parents a few years before, my younger sister was diagnosed before me. If I had gone for a mammogram it might have been seen sooner.
Here I am in at the start of 2021 still with no clue. It pains me my kids are out here so young without any guidance from their father! Can I do it? I told him I’d be right behind him, but how far? I can honestly tell you I’m not that angry, but I am totally missing his guidance. I truly feel alone out here and at times want nothing to do with living and guiding my adult kids. 34 and 26. That’s too young. Right? They are destined for a hard time without their Dad and I may fail them because I stillgrief him so.
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ctmbsikia
Have you thought of joining an online support group for widows? You really need the support and guidance that only someome who has been through the death of a husband can provide. A friend of mine belongs to a Facebook group for widows. She said it has been a godsend. Maybe you could check that out. Or start a new thread here to see if there are others in your situation who could offer helpful advise. Just some thoughts.
De
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Thanks De. I did sign up in a grieving forum. It is way too depressing for me. I don't do FB. I really hope what they say the first year is the hardest is true. Some nights are easier than others. Sometimes I just can't help where my thoughts go. I am OK this morning though. Tonight and tomorrow night I am busy so that's good. Here's to last night being the worst of the week. Thanks again for listening. What a process!!
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ctmbsikia - my husband passed away in Sept 2018. The first year was hard, and the second year was hard. I think when I went into the second year without him that I thought I would would be better than I was. I was better, the grief came in waves and still hurt. I still get the waves of grief, it is just not as often. My children were 39, 36, and 23. Each one handled it differently. They are ok now, but their dad is still in their lives, they tell stories, and they say "if Dad were here he would..." Everybody grieves differently and there is no right/wrong way. Every body has their own story. I was better if I was busy, but also think you need to have that down time to grieve.
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ctmbsikia prayers and hugs to you.
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Jaycee - Love that Lucy Episode. Some of the parodies also very funny. https://www.nbc.com/saturday-night-live/video/lucy-a-bomb/n8652 . Wishing screening, dx, monitoring were emphasized more rather than the drastic treatments. It seems like a lot is known, but much more is not known.
NoPink – thank you for the encouragement to do the raft trip. Unless I am very sick/weak, I think not going would do a lot of harm and going can only make things better. If it delays treatment ( if there is any), so be it. How much difference would a delay make?
Ctmbsikia – grief is personal and everyone goes through it differently. Have not experienced the loss of partner, but still miss my parents and grandparents. It seems like it slowly ebbs, but never really goes away. Hugs, peace.
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So I really don't know how to handle people that don't get it. You know they are going to ask how you are, and I should learn to just say fine. No, while on a zoom with my friends, I shared that I am on the see ya in 6 months still and I'll be going back for another test in a couple of months. All but one felt my frustration, the crazy one that moved to Florida and told me I should be glad I am not un-curable. Really? Well if you ever get the misfortunate of bc, don't call me. If you do and want my help and support that will be the time I tell you how you hurt me and go join a support group. I'm out.
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ctmbsikia, I think of you often and my heart aches for you. I haven't experienced your loss, but when I try to imagine what it must be like, it can be crushing. If it helps at all, you know how much we care.
With regards to people who just don't "get it" and never will, I say, "I'm fine". They don't want to hear it, so I'm not going to say it. I'm not sure which I find worse, though - the ones who don't get it or the ones who smother me with "Oh, sweetie, I'm SO worried about you. When can I come over and see you? I'll die if anything happens to you!" Sheesh!
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ctmbsikia some people just never will get it. You have been through so much much and cyber hugs to you!!!!
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My sister thinks I'm a big baby because I get my yearly mammograms plus my CTs twice a year due to the kidney cancer. When I mentioned - just once - about an upcoming scan, she said "I thought you put all that behind you, just move on." Same older sister I wanted to trade in when we were kids and my opinion hasn't changed.
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Alice, seriously??? I can't believe she would actually say that to you. It would be interesting to see her reaction if SHE had something medical happen to her. Wow! Just WOW!
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