STEAM ROOM FOR ANGER
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Thank you, Flashlight! It is such a huge help to be here, where people get you. I am after a sleepless night. Luckily, I work from home. I sure won"t impress anybody with my prowess today. Not today, not until I'll get out from this in-between. This damn waiting! Pure hell, Runor, you're right! I'll talk to my MO on the 28th. And then another procedure, waiting for some more results... Really exausting going fom one day to the next. And yet, somehow it's not as bad as when I was diagnosed, if I can even compare. I don't have that sense of frantic despair. I am just thoroughly set off.
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Just a quick rant because my family really doesn't understand. I have been struggling with vaginal issues for the past year. Nothing medically dangerous, but extremely uncomfortable nonetheless. Countless visits to my gynecologist with recurrent diagnoses of infections, prescriptions for anti-fungals and comments about vaginal atrophy. We discussed vaginal estrogen but they wanted to exhaust all other options first. Well, finally found my way to a different provider who contacted my MO and immediately prescribed vaginal estrogen. I was almost instantly better. Why was this so hard? Why didn't we have a discussion where I could provide informed consent? Clearly time for a new gynecology practice.
Thanks for letting me vent!
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I'm getting so sick and tired of the phrase quality of life over quantity.
It is insulting.
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When people talk about 'quality of life', they are speaking from their own perspective. What is an unacceptable quality of life to one person might be a difficult but manageable life for someone else. What is intolerable for one person, someone else might be grateful for. We each make trade-offs based on our own situations and our own risk levels. It was an easy decision for me to pass on Tamoxifen after my first diagnosis, just as it was an easy decision for me to take an AI after my second diagnosis. I know my tolerance for quality-of-life side effects based on my current risk level and prognosis, and I know that my tolerance level would likely change should my prognosis change.
moth, no one else's decision or perspective in any way reflects upon or passes judgement on your decision and perspective. I think in the end all of us probably have a breaking point where quality of life overrides quantity of life, but that point is different for each of us based on our own realities. Nothing wrong with that.
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My mother-in-law, who is the sweetest, best woman has glioblastoma. I hope this is quick for her and for my husband
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I'm so sorry, edj3. I hope things work out in the best way possible for your family. Sending virtual hugs.
Trish
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edj3, I'm so sorry for your mother-in-law and all who love her.
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@Rain: good luck on your upcoming ..........STUFF!
We donated all the vases from the flower deliveries. Just these damn green plants left. Good idea though, if I keep getting mad at them then perhaps it's time to let them go too.
@edj3: sorry to hear this news. Never easy is it?
I scheduled a rapid covid test for tomorrow morning. Ruling out if that's the cause of my lack of motivation. Went to work this morning and was back home by 10:30 today. Trying to stay caught up remotely. Something is not right. My head hurts trying to figure it out, better go lay back down.
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Edj3 so sorry to hear of your Mother-in-laws diagnosis. Why can't cancer leave truly lovely people alone?
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edj3, I'm so sorry. That's a horrible diagnosis. I hope your mother-in-law's remaining time is a painless and comfortable as possible.
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edj3 - damn cancer! Peace to your your family and MIL
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Edj, big, sad hug.
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Edj. I'm sorry to hear.
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Cancer sucks. Making decisions is hard, not knowing if treatments will work and if they do how they might impact the quality of life, which for each person, has its own meter. Struggling with the decision whether to switch to Keytruda since I am PDL-1 as well as ER+. I am also AR, but I guess there aren't drugs for that. My oncologist said I would no longer take Exemestane/Afinitor since drug interaction is unknown. She also said that it works well for Melonoma and one other cancer, but dosn't seem to do much for BC. She said that some drugs don't have great results for the "population" but can still work for individuals. I only took Exemestane/Afinitor for about 1 1/2 months. The Radiologist had me drop Afinitor for 18 rounds of radiation. I will resume Afinitor once the lower dose arrives. So, if Keytruda is unlikely to work for BC, do I take the risk? She said she would also refer me to any other clinic, but suggested a University based one that does research if I am interested in clinical trials.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
9/2019 New tumor in R-axilla, ER+. Genetic test showed no known markers (20+ looked for). PET scan, no indication of spread. Stopped Tamoxifen, start Arimidex and Ibrance
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray. Surgeon said PET scan measures activity, and since it was not cancerous, why the PET did not see it, but the CT did.
CTs through August suggest tumor is shrinking, a little.
12/2020 – Arm swelling becomes significant, start developing a rash. DR orders CTs which shows cancer has metastasized. Stop Ibrance/Arimidex 2/2021. Start Exemestane/Afinitor 3/2021
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It’s been 10 years today since my brother passed from cancer. It’s been almost 17 years since my dad passed from cancer. It’s been almost 4 years since my mom passed from cancer. I was diagnosed with MBC in February 2021. Cancer can go and F itself!
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My dear SIL experienced the worst pain even when radiologists inserted about 11 radioactive 'beads' weeks prior to having an abbreviated course of radiation therapy (brachytherapy). The doctors were suppose to wait about an hour or more for pain med to take effect but within less than 30 minutes began the procedure. When she complained all they said was "just a bit longer', "stay strong" . Total absence of compassion. Those SOB doctors proceeded while touting the advantages of this new treatment option. All of this happened in a supposedly state of the art cancer center associated with major hospital near Phoenix. As far as intervention for pain for procedures nothing has changed in the 6 plus years since my experience.
When I had the radiographic insertion of location bead prior to surgery it was so painful I swore I would have a mastectomy so I would never have to go through that again. I know I would rather die with cancer pain in hospice care where pain management is provided by caring providers than in some surgical suite with minimal pain relief and with doctors hidden behind a sterile drape advising me to 'hang on just a bit longer.' I'm thinking this problem of inadequate pain management in radiology may be because people do not complain, and the drape or distance between patient and doctor diminishes the humanity of those providers. I wish it was simply F*** cancer, but IMHO it is the uncaring providers and not cancer that I fear.
There is barely a word in the Internal Radiation information on this site re: Pain during procedure.
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Bessie agree totally that it is all based on your own perspective on qualify of life. We all have our pain levels we can handle too. Everyone has stuff they are dealing with.
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Sorry about your friend Beesie. Alice hope the news on your scan it good.
My husband was a Funeral Director, so I got a lot of flowers that were left at the Funeral Home. Most of the ones left he took to nursing homes. When my husband died (9/24/2018) it was very suddenly and unexpected, a lot of little things would break me either into crying or anger. I still have waves but not as many and I don't think you ever "get over it" it is something always missing from your life. I still sometimes have to make myself do things to keep living or have some life. I also have such great family and my grandchildren are so much fun. The older ones stop in and teach me new dances or show me new clothes they bought or go out to lunch with me. Alice - I kind of agree with you about the tree, I understand why they do it, but it ends up looking crappy and is a distraction to drivers.
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With it being Father's Day yesterday it was a hard for me, but I was with his sister and my brother in law all weekend so that helped. Went down to the bay cottage yesterday. My son came down later. Got a few things done but still no water.......getting there. This whole thing of living without is getting on my last nerve!!! No husband, no water! Bah!
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Left my phone home on the charger this morning! Hate when that happens! It's a beautiful day so I will just go fetch it on my lunch break. Happy to report my energy level has returned. No clue what was happening inside my body last week. Took a rapid test and it was negative. Wondering if my immune system was reacting to something else? It's well over 30 days since my 2nd dose. Much of how I felt are what people are reporting after they got the vaccine. Weird ish! Glad it's gone. While I realize this is the vent room I hope you don't mind me posting that I am having a good day.
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I am glad you are having a good day and it good to know and you can feel free to share that too!!!!!!!
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YAY for good days!!!!
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I'm REALLY glad this month's almost over. It's been one medical appointment after another so far. It actually started in mid-May with visit to MO, her very muscular kneading of breasts and nodes, and the 4 large and 1 small tubes of blood left behind; 6-3: mammogram and BS appointment (at least she's fun to talk to, and not as muscular); 6-4: CT scan and urologist visit for kidney cancer follow-up, with not-so-clean scan, which led to 6-11: PET scan. Yay, clear, and now I only need annual CT scans! Boo, why the hell do radiologists use terms like "probably benign" which is not so reassuring for anyone who has had cancer 😠. Say YES or NO or I DON'T KNOW, don't make me guess! 6-15: primary doc with more blood and some pee left behind, plus X-rays of hip and neck. Hip okay (wish I knew why it hurts since it's the fixed one) but neck showed carotid problems, so... 6-21: Doppler ultrasound of carotid. Not so bad, mild blockage but just keep taking mini-aspirin and cholesterol medicine. I AM POOPED. But I'm happy to be technically healthy, even though I hurt like hell almost everywhere. This all felt too much like 2018 all over again, where one damn thing kept leading to another. Luckily, it was just an amateur reenactment.
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Oh Alice. I agree the word "probably" should be changed to something else. "Odds are you're fine but come back in 6 months" That's their definition of "probably" My 1st birads 3 (AFTER the tumor was out) I had to read a whole study on the scoring system to try and comprehend the use of that word.
I'm glad you got through all your routine maintenance relatively well. It really sucks for me, I rather never go to a doc again, but because of you and many here, I am doing a bit better with the white coat anxiety.
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cctmbsikia
We got an out-of-town invitation to something in August. Husband's been bugging me about RSVP which is due in early July. I hated having to explain that I had to slog through the medical stuff first because until it was done, I had no idea what the heck I'd be doing in August. Now our state's on a Covid upsurge because of mass stupidity, so I'm not inclined to travel elsewhere unless it's a permanent escape. All the doctor's offices asking if a person has travelled out of state, and I want to scream, "That would make me safer!"
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I'll take "probably benign" over "indeterminate".
Right now I have some of each.
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My Dad who is in his upper 80's in another State 2 states away got his COVID shot just for me apparently. But he lives with my brother who is against getting it. Told him they cannot come here. Do not even know WHEN I will feel safe even visiting him. Just pray he is still alive then.
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bcincolorado, If you are vaccinated and your dad is vaccinated why couldn't you visit? If they didn't stay with you, you could always visit outside. You could stay masked. I would give anything to see my dad just one more time.
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Ya, I would visit with dad but only see brother outside and both masked. That is what my onc thought about my one unvaccinated relative. Mind you, this is for my situation, where we believe I have a good immune response.
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Oh, Beesie, again? Seems like you're always dealing with Schrodinger's Cancer. Good luck.
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