STEAM ROOM FOR ANGER
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Seems odd to see MO on zoom calls anyway. Mine always pokes at me normally. Now have not seen her in person in a year now and only online telling me how my tests she ordered came out and what is next.
I think they are only having chemo people come in for chemo and that is it.
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So yesterday a chemo nurse called me, wondering why DH hasn’t been in for chemo. I said I tried to call 3 times to cancel. “Oh that front desk”. And that he’s in hospice. Her ‘tude changed immediately.
Went in today for my flush and labs, nurses were falling all over themselves with I’m so sorries. And distracted me so much I didn’t get to chew on the office manager. Oh well.
Then I told them I had to get tranquilizers for his dog, all the hospice ppl upset him so much. I thought they would hit the floor One said I should keep them for myself
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Well. I think it's too little and awfully late but I'm glad they changed their attitudes and were nicer. Still not enough IMO. You're more gracious than I would be.
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Agree w/ cm2020, Jumpship. I wish I were near you--I so relate to feeling gutted by my bones
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Hugs to both of you right now. Vent when you want and we are here.
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Stopping by to wish all of you a peaceful Easter. I realize it is really hard to carry on with so many burdens in this life. I really do hope there's eternal life after death.
Turned the calendar and almost instantly the appointment anxiety has begun. Thankfully, the meds have restored my function. I do still worry about everything and anything, just to a lesser degree than before. Going for 1st vaccine dose Monday, NP appt also next week since starting the anti-depressant. Mammo on the 15th and BS on the 19th. I really hope this fat necrosis is resolving, no changes, and maybe just maybe I won't get another birads 3!!!??? I'll let you know.
I have also been busy going to the Bay to try and get this place ready. It's a wreck still, but glad they let us in to work on it. My son, a great help!
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Happy Easter to you too!
Getting my 2nd COVID shot today. Sore arm and no bad side effects otherwise. Took some Tylenol and felt a little stuffy after 1st round. My son who is a teacher had both of his and got really tired after his 2nd one and had to rest for a day and is young and healthy. Of course running after 4 kids in the house might have something to do with that!!
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This is me having an anxiety attack, but I"m pissed off. At the Canadian medical system. Which we crow about as if it's the gold standard for care. And while care - when you can get it - might be good, there are many, many people waiting....waiting....waiting and living shit quality of life because this system is slow, unresponsive and too top heavy!
I showed up in the local emergency room March 27th with what can only be described as hemorrhage after no periods since 2017. It was unstoppable and extreme. The attending doc told me to NOT FOOL AROUND with this. This is urgent! Bleeding in postmeno women is considered uterine cancer until proven otherwise, the doc said. You are a breast cancer patient! DO NOT IGNORE THIS! So I make all the appropriate calls and have been waiting since then for appt calls. Today the gyno called me. I get to see him May 4. Bleed March 27 and your quick, fast, urgent gyno appointment is over a fucking month away? So much for this being an urgent emergency. This is NOT COOL and I am underwhelmed with our system.
Sorry. I am freaking out and not keeping a handle on myself. But really? Why tell me the situation is urgent when no one is going to move any faster than they normally would have. Jeez.
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Nope, not cool at all and I would be blowing my top also.
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runor, it sounds like it's your gyne who's the problem. Does he have the report from the ER doc where this was stated to be urgent?
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runor, can your MO get you in to see the Gyn oncologist faster to rule out a problem.
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Oh no runor. I take it they got the bleeding stopped though? Maybe see if they will let you switch from tamoxifen to an AI? Do keep us posted -I'll come out there and punch somebody in the mouth if you need me to. Take care!
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CTMB - I would LOVE for you to slug some people in the mouth!
Beesie, I have no idea who has what report. I can't get my onc on the phone. I can't get the gyno on the phone. It's all, go sit down, be quiet, wait until we call you, we might forget you, have several times over this whole cancer thing, but don't worry, we have the situation in hand. Yeah, right.I called my onc's office yesterday and they told me he'd call me April 21. Really? I have to wait 3 weeks for a fucking phone call? So I called back today and got an email address and said I want someone in the office to print the damn email off and hand it to the onc. He might not have any input. But I want him to KNOW what's going on. I am being treated as if I am postmenopausal when in fact there is no evidence to prove this. Yes my periods quit but they only quit when I went on tamoxifen. In which case a chemically removed period is NOT sufficient evidence upon which to base menopausal status. I think I should go off tamox for a month, have a blood test, find out if I am or am not menopostal (not a typo!) and then gyno can base treatment and findings on that information. It is my onc who has to arrange for a tamox break and blood test and time is a wasting and I can't freaking get a hold of him! Hope his receptionist does what I asked and hands him my damn email. This is insane.
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Runor - Have you thought about simply "presenting yourself" at either the oncologist's or gyn's offices at all? Sometimes that can get their attention, if you just show up without an appointment and ask to talk to them, be seen, worked in, etc.
I don't know what part of Canada you are in, but I know some people in the Vancouver area pop down here to Washington for medical things from time to time. If you aren't too far from a border, you might consider trying an ER or Urgent Care in the US.
I'm so sorry about your situation. I totally understand your frustration. I'd be freaking out too!
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Runor, tamoxifen is a trickster. If the ovaries go into overdrive, you get high estradiol levels and no periods but you are not postmenopausal. Even some doctors do not know this. (If you need references to papers, PM me.) If they test your E2 and FSH levels they can see your true menopausal status, and you don't have to be off tamoxifen for them to check this. I know this because eventually my periods stopped on tamoxifen and my E2 was super high and FSH low, so not postmenopausal.
And it seems to me that if your hormones have a big fluctuation for some reason that could trigger a mega-period. (Not a doctor, just reasoning here.)
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Oh NO that is terrible. Had no idea the wait time was so long in Canada for care and it is an urgent matter. Hopefully MO can intervene on your behalf and get you in sooner.
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Got call from emergency room doc who said, basically, that I am not 2 mm thick, I am 2 CENTIMETERS thick and my ultra s. shows some very alarming results. I told her I had a gyno appt a month from now and she said no, not good enough, you need to see someone much sooner and I hope you are prepared to part ways with your uterus as that is the most likely outcome from the results I see. My bubble burst. Meno or not meno, a 2cm thick uterus is bad news.
At this point I just want it gone. I don't want anymore ultrasounds, or biopsises or D&Cs. Just book the OR and take it out! Done deal. Question, do I fight to keep ovaries and spare myself instant menopause? If I have gone through menopause this might not be a big issue. I don't know. I can't think. I just want to throw up and cry. It's almost exactly 4 years since my lumpectomy, April 2017. And here we go again. A song that way too many of us have had to sing. My god.
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****************hug****************
Still in your pocket, I'm so incredibly sorry runor.
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runor: crazy-making times for you. Yes -- most of us Canadians have been through some sort of stupid wait game, but when it is urgent it should URGENT, meaning now not weeks away.
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I'm really sorry you are dealing with so much BS.
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Runor, hanging on in your pocket. Can the ER doc help facilitate your being seen soon? I went the total hysterectomy route, but I was clearly post menopause so a very different situation. If you have questions about my surgery experience, feel free to PM me.
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Rumor, I had a hysterectomy several years ago when I was 58. At that time, my hormones were still going full speed and I apparently still wasn't anywhere near menopause. The oncology gynecologist asked if I was trying to get in the Guinness Book, because it would be the only reason to keep my ovaries. Because I had endometrial cancer (actually found out after surgery it had started to burrow into the uterus), they took out everything but my vagina. I had a few sweaty nights for a week or two and that was it. And it was summer, so it may have been weather-related. No other hot flashes or mood problems - I was actually MUCH happier since I was no longer pouring blood and using two mega-super tampons PLUS two mega-super pads every freaking hour and still overflowing. So losing ovaries doesn't mean a rough instant menopause. And based on my subsequent breast cancer, it apparently would take a stick of dynamite to get rid of hormones in my body. Good luck.
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Think I mentioned elsewhere, I was nowhere near menopause and my hysterectomy removed all but my right ovary which, bless its little heart, has never ever caused me any issues. I'd had my tubes tied (well left side tube removed b/c of a tubal pregnancy) nearly 20 years before that. But I bled all the time, just like what Alice described.
Also happy to answer any questions you might have. Or be a place to vent. Here for you in any/all ways.
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I had one ovary takeout at 30, then uterus about 35.In mid 50s I asked about menopause. Done, didn’t even know when. But it’s almost always hot & humid here, so any extra sweating wasn’t noticed.
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So sorry, runor. You're really good at getting your point across so start making calls and don't stop until you get a plan in place. Did the ER manage to stop your bleeding? Maybe you need to return there and push them to arrange a follow up appointment for you. I agree that the time frames your doctors are discussing are ridiculous - you need help NOW! Is there a NP or PA in one of your doctors' offices who could intervene for you? Would a nurse navigator be of any use? Sharpen your tongue and go out and rattle some cages!
If you do go the hysterectomy route (and it sounds like you definitely should), my advice is to let them take your ovaries when they remove your uterus. I kept my ovaries after my hysterectomy and they have just created additional problems, generating cysts and creating estrogen that fed my ER+ cancer. You don't need more things to worry about. Good luck and keep us posted.
Edited to add: I used to envy those of you using the Canadian health care system. Your post makes me appreciate my American medical coverage. It’s expensive and can be complicated but I’ve never had to wait that long for treatment.
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Oh, runor, I'm so sorry you are having this crisis. As JKL says, use your amazing eloquence to advocate for yourself. Your uterus sent you an urgent message that you may need surgery to get rid of a problem that is brewing, and hopefully surgery will be all you need, and you can get through it and resume normal(ish) life. I don't know if ovary removal is advisable or not, but I doubt instant menopause would be difficult given your age.
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runor- while I’m glad the er doc called you with results, I am so sorry you are facing a potential surgery. My quick research of your last post is that yes! 2 CM is way above normal. I too would advise if given the option I would remove the ovaries as well. Especially since you were er*. Hard enough I know but you have given life. In some stupid way you did good. Some women are not so lucky to have experienced that. I understand the loss you will feel though. We are here for you.
I went thru “the change” naturally. Pre cancer and all of it was crazy. I didn’t know if I would bleed to death, have to move to the artic circle, or kill my husband. *distraction*. lol but true story! That’s why they call it the change Your life will change I think that’s why they call it life
In your pocket my virtual friend.
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Thank you everyone. You do not know what all your words mean to me. Seriously. I know you would all join hands in a circle around me (or any one of us!) and focus the good, warm healing love into me if you could. I feel it. I am not a traditionally religious person, but a friend sent me a voicemail of him softly saying a prayer. I wept. It comforted me. I will listen to it many times.
I am going to dig through the back of my medicine cabinet and see what emergency pharmaceuticals I have for unbridled terror. I bet there's something suitable the vet left for the horses, I just have to find it......
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