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All TopicsForum: Emotional Crises: Anxiety, Depression & Other Emotional Effects → Topic: STEAM ROOM FOR ANGER

Topic: STEAM ROOM FOR ANGER

Forum: Emotional Crises: Anxiety, Depression & Other Emotional Effects —

Meet and support others who are affected by these issues around breast cancer fears, diagnosis and treatment.

Posted on: Jul 16, 2015 12:21PM - edited Aug 2, 2017 01:46AM by sas-schatzi

sas-schatzi wrote:

This thread is meant to be for RANTS and RANTING. Then Rant again. We need a place to simply get rid of the anger. Write it here. Unleash it all. Get it out. This isn't meant for the Stupid comments(great thread). This is for the gut wrenching, tell them off anger.

IMPORTANT: When done ranting don't necessarily stick around. Toxic. Drop the rant and find a better thread.

Only rules: Please, follow them as the Mods will shut it down in a heartbeat( waving Mods)

1. Be careful to not mention docs, nurses, hospitals by name. Defamation and all that tedious legal stuff

2. If it's caused by someone on BCO, just don't mention their name. I think the exception will be if someone is stalking you, blow their anonymity wide open. A stalker doesn't deserve politeness.

3. If you think the rant is about you, let it go, they're no names. Don't take it personal. This is the steam room.

4. If they're is a fight, don't expect the Mods to moderate, it was your choice to come here.

5. After writing a rant, do nothing more, re-read at a future time. Decide if it's important enough for you to cut and paste the rant to whomever caused you the anger. It's a choice. Sometimes it needs to be done, but remember they're can be fall out.

6. ######## pound those keys, SCREAM(caps), J*&R$WSDF&(swear)

7. Religion and politics discussion should go to those topical threads. IF their is something that impacts cancer, it belongs here.

I will revise topic box as needed-sassy

For puking and the color works pukeewogh

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 6, 2017 10:44PM Rosabella wrote:

I'm scared too. Being stage 3a with high prob to mets sucks. I can't see myself going through stuff where it may buy me more time if I feel shitty. I'd probably end it myself. I don't have spouse or kids so it's easier for me to say this.

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Dec 7, 2017 02:33AM runor wrote:

Chronic, wow, this hit a nerve with me. Dying and leaving stuff behind that was meant for my eyes only, and someone else reading it and taking it out of context and being hurt by it after I am dead and not able to explain is a huge worry for me. So I burned it. I have burned pretty much every diary and notebook I ever kept. I figure that it's not the having of them that matters, but the remembering. It was hard to do. It was hard to stand in front of our wood burning furnace and toss stuff in, but I did. It finally felt good, any possible misunderstanding or hurt feeling has just been avoided. The LAST thing I want is to harm someone I love by having them read about the day I wanted to divorce them or sell them to gypsies!

For me, getting rid of stuff is therapy. This past week I took two unset, very large and very good quality topazes I've had forever to a friend for her adult daughters. I told her her girls have always been special to me and I want them to have a little something of mine. Now. Not when I'm dead. I read somewhere that an inheritance left says I thought of you in my death and a gift given says I thought of you in my life. I thought it was an interesting approach. But I really feel the need to get my life in order, trimmed down, thinned out, pruned. Should I pop off, Hub and daughter will be overwhelmed enough as it is and trying to wade through my junk will NOT be a pleasure, but a chore I do not want to leave to them. Oh, there will be some stuff and I am trying to leave instructions for what might remain. But still, there is a lot I am doing now to lighten that load (that includes REFUSING to bring in more STUFF!) I have told people that they better not give me Christmas gifts, OR ELSE!

The hard part is a handful of items that were my fathers and they are precious to me. But once I am gone, to whom will they be precious? I look at these things and am reminded of him, but other people look at these things and they are just things. I do not want to pass obligations, burdens and guilt on to others. I do not want to pass on the legacy that says, "I have this thing because it was my mother's and I'm not sure what it is or where to keep it, so I have it stuffed here under the spare bed because I feel bad getting rid of it." That, to me, is a horrid thing to do to someone. But I have not been able to part with these few touchstones yet.

I am not metastatic. Have not been diagnosed with a recurrence, although this last Monday the mamm and ultra did say that it looks like the original, initial cancer they found, the architectural distortion, is right where it was a year ago. Unchanged. So did I have surgery and radiation and STILL HAVE CANCER? My 'case' is one of wait and see cause yup, that might be a scar or it might be the cancer no one got rid of in the first place. This has upset the hell out of me! I was ready to try and move forward and this has placed the sword of doom right over my head again. So.. I better get my life cleaned up now while I am partly sane. Who knows when I will tip over into entirely dysfunctional, which is what happens when I get stressed out. Extreme anxiety and terror turn me into a babbling, quivering, non-moving idiot.

I too look at my husband now and then, as if from a great distance, and imagine another woman beside him in the truck, drinking coffee with him at the table, beside him in bed at night. Makes me want to smack a bitch! Oops, not ready to let go of my spot just yet. Apparently that's the next thing to work on!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 7, 2017 03:46AM Bluebird-DE wrote:

Runor - you wrote "The LAST thing I want is to harm someone I love by having them read about the day I wanted to divorce them or sell them to gypsies!" and that is exactly why I got rid of my journals and letters. That part is done. The stuff is not done. I have so much to do and no ability left to get it done. Thought I would be on my feet by now. I guess I will have to hire someone to go through with me and pack up and haul away.

When I first was dx I went furniture shopping. I was already stage iv w cloudy lungs and lymph nodes on both side of the body had cancer. Faslodex/Arimidex cleared my lungs. Anyway............. I chose furniture that would suit Hubby when I was gone. Nothing I would say is a favourite. My friend whose son died of leukemia sat me down and said, you can't prepare for what he will want later. He doesn't even know. He could throw everything out and haul his Beast recliner (that's really the name, it lives in the bedroom/library where he sleeps now) in here with just the TV. Still I got the generic male stuff, lovely greys. I do like them a lot. But what is the colour of your sofa slipcover? Mine would be a deep sky blue like before the rain when the sun is still shining behind some clouds. So point is, I have spent now four years with the grey furniture I really really like. And will probably never have that blue sofa. Does that mean live in the moment? I guess it does.

LOL - Just reminded myself. When I was sure I was going to die about four or so years ago I started a rumour about Hubby. I rumoured that he is really a millionaire and drove his old truck to throw everyone off the scent. Told waitresses and such. He knows I did. I told him, "Now if there are women after you too soon after I die you will know they are probably after your money." "What money?" he asked. I said, "Don't worry about that part. Look at the ones who aren't seeming to notice you that much, the nice ones who think you are funny." Never did think he was funny for years, women would look at him and laugh, just laugh and I would look at him and think wtf? why? After 20 yrs of marriage I made a point to laugh at his stuff at least once a day and tell him he was right at least one a day. Now 37+ yrs later it has helped. I still do it. And I will start the millionaire rumour again when time is calling for it.

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Chemotherapy Xeloda (capecitabine) Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 7, 2017 11:40AM Micmel wrote:

I don't want anyone near my DH. So runor. I am with you. There is no way I want those hens at his heels. I'm going to fight till my last breath. If he does have someone else when I am gone. That bitch is being haunted!!! Period!! ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/9/2016 AC Surgery 6/20/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Dec 7, 2017 12:03PM - edited Dec 7, 2017 12:06PM by marijen

Don't forget your emails ladies. I have Macafee, so after I delete, I shred. The problem is without them I can't remember a thing.

Oh and your harddrives. Find someone to remove and drill holes into them.

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Dec 7, 2017 01:55PM - edited Dec 7, 2017 02:04PM by chronicpain

LOL, Marijen, guys (some exceptions of course) may notice there is more space in the closets for them to put in their gadgets, tools, computer stuff , old motorcycle magazines, etc, but most will not wonder why there is suddenly more space unless it was occupied by something like a giant stuffed Pluto dog (I have one that is almost 4 feet tall, from 1965, missing one original ear though he did have some reconstruction surgery to make him whole), that would be hard to miss if he departed. The stuff in the closets in question in suitcases and boxes is so deeply buried behind other junk he would not likely even notice if it was gone until it became time to make space for someone else, if needed.

Off to another appointment now, and then as long a walk as my still quite painful lumpectomy wound and healing scar lump and sentinel node biopsy wound from 11/22 can tolerate, along with my usual musculoskeletal and autoimmune restrictions, so maybe 1-2 miles on a flat,max, with frequent rests. It is a beautiful, sunny though crisp day here in northern CA, the leaves are quietly turning yellow and orange. I usually now walk while listening to audiobooks to prevent me from constantly thinking about breasts, breasts, and more breasts. Ironically I was never able to use mine for their primary intended purposes, and now they just create trouble. I always sleep poorly and last night had a nightmare where there were giant nipples all over the place, in the kitchen drawers, cupboards, in the crockpot, and even when I lifted the toilet lid. I woke up in a cold sweat.


Dx 10/2017, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 11/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy
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Dec 7, 2017 08:29PM Rosabella wrote:

for those saying husband is off limits once you're gone, why? Don't you want him to have a shot at life with someone he loves to be happy in other words? Im sure its not going to be soon after but ive never heard people say this about their spouse when their time is about up. Coopdizzle was a poster here who died last year. She wanted her husband not to remain alone depressed forever so she made him promise if he sees someone and it clicks beyond friends thst she wants him to be happy again. What a selfless act, wanting the spouse to rebuild his life and if it's with someone he loves, all the better. It's been shown that men who are married tend to live longer than others. Maybe I'm missing something here. Maybe you think this now but would be at peace if you knew his life wouldn't be lonely if he finds love again down the road.

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Dec 7, 2017 08:49PM Micmel wrote:

I think it's pretty obvious that life will go on and that he will still wake up everyday and do the things he must do in order to live. Those are my feelings, my sadness and my battle. I will have no control over when the time will come that I am no longer here, but when you have someone in your life that makes you smile just mentioning his name, and you're going on 15 years together , I am allowed to mourn my loss and my fears. That is what this room is for. Not for you to really understand what I'm feeling and how I mourn. This is a room to get out feelings and thoughts. Rational or not. Those feelings occur. ITs called jealousy and fear and venting. You don't have anything filled out , so I Certainly would never want ever for someone To be stage four, and I don't think staging is scarier to that person going through stage one two or three is less scary than someone stage four. But I can tell you from experience that once someone tells you have not too good statistics, you start seeing things embedded with eventual loss and grief. You feel different about even walking down the street. So if I am going to express my deep desire of having to leave my one true love forever. I don't think it's selfish. I think it's just grief over the potential of one day loosing someone vital to who you are! ~M~ Obviously those things are not said directly to him. They are my deepest thoughts. That I just had to explain. Which ended up making me feel worse all over again

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/9/2016 AC Surgery 6/20/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Dec 7, 2017 09:30PM Rosabella wrote:

i took it literally. Sorry.

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Dec 7, 2017 09:46PM Micmel wrote:

no need to be sorry, this disease just plain sucks ass. I've said things and done things I ordinarily would never do before diagnosis! I know for sure life is too short. I just have a very strong wonderful romantic husband and he is my life. So I do tend to be very protective. And throw in the crazy hormonal meltdowns. No one should ever be sorry too much on this thread. It's supposed to allow us to get out our thoughts. I was just trying to explain my feeling of devotion and love for him. Have a restful night! ~ M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/9/2016 AC Surgery 6/20/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 11/6/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Dec 7, 2017 09:56PM runor wrote:

I have a friend whose mother died and within 3 months her father had re-married. All his children quit speaking to him. That their mother could be so easily and instantly replaced was a deep and lasting insult to them and to her! It was inappropriate and grotesque. But he was one of those stunned, useless men who had been married to a mommy wife, who did EVERYTHING and he knew NOTHING. HIs poor, precious self needed to be cared for and catered to and babied and mommied by a doting woman (I threw up in my mouth a little typing that). There is getting on with your life and then there is filling the empty spot in the bed as fast as you can because you're a self centred shithead. Two different things.

I do not think my dying should turn me into some self sacrificing Mother Theresa who wants to blow blessings and kisses upon those who come to look upon me. Screw that. If I die before I am ready, I will do so angrily and with great mourning over time with my husband that I will not get. Should I happily hand that time over to some other woman? Not mine to give or withhold. While I would not go so far as to verbalize a curse upon the head of another woman, I also do not think I need to verbalize that he rush out and start hound dogging around as soon as I'm planted! Like jeez, class it up a little, Buddy. But what I have said, clearly, is that if some other woman does step in to look after him and be his companion until his death, then his passing should not leave her homeless and destitute. But that she nor her children should get what was MINE and the portion of it that MY CHILD is entitled to! That I have said in black and white, loud and clear, treat any future women fairly, but do NOT let them cut my kid out of her inheritance!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 8, 2017 12:07AM Bluebird-DE wrote:

i hope my Hubby will take his sweet time and be classy about it. But still find someone very special. And I have long struggled with jealousy I guess there's a fine line and it's hard to consider now how I would feel late IG given a glimpse from beyond the veil of death into life.

On another note. So tired. Too much and to many questions and doubts. Got up and headed out into the dark morning and snow started roads got icy and wind. We got to Plymouth and Bruce thought we should turn back. Me too. Inserting that two years ago we were in a ad on collision when trying to find safe haven from a sudden blizzard. Truck split in two from under by small car, not our fault and now we are big ickens, truly...... Home and cancelled appointment. But next chemo pilll training by nurse appointment is not until one week from now. Not happy. Puts off starting chemo, genetic testing, appt w oncologist, ultrasound, labs, answers I need. Their office never did schedule me for this training, we had to push through with another department calling them because I was supposed to have training before chemo arrived. And there is the periodic pain in spine that goes from 0 to 9 in a minute, makes me cry. I don't know what causes it. Gone in about 5 minutes. I think I have jumped out of frying pan into the fire. Meaning Warsaw CC to Goshen CC. Very lost and discouraged. Don't know if I should just give in and go back to Warsaw or find a different oncologist. Or let the dust settle and hope they can and will do better.

"Every mistake I have made has proven to be invaluable information for someone. Namely, me." Me Dx 7/15/2011, IDC, Right, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 3/11 nodes, mets, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Lymph nodes Chemotherapy Xeloda (capecitabine) Surgery Lumpectomy: Right; Lymph node removal: Left
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Dec 8, 2017 03:02AM runor wrote:

Hugz to you Bluebird. I am so sorry for this struggle you, and so many, face. I have no words.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 8, 2017 09:46AM Scared67 wrote:

Micmel - Agree with everything you said...I too feel so different from the rest of the world.

Bluebird...(((hugs)))

Runor and everyone else - (((hugs))) - too.

As for me, I'm not so much jealous at the thought of my DH finding another wife. I'm mad that between the two of us - he's the one that doesn't workout and is very overweight but has next to zero health problems. Not fair. I guess- I am jealous- jealous that he gets to outlive me by probably decades..

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/17/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/7/2016 Hormonal Therapy 11/8/2016
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Dec 8, 2017 01:36PM jaycee49 wrote:

To my DH: go ahead and find another wife, maybe one you can have what you call "regular" sex with. I haven't been able to for at least 10 years and he deserves that. I had atrophic vaginitis and chronic UTI's and BV for years before cancer. Now with estrogen suppression drugs, I feel like I have a UTI and BV all the time. This month, I went to my new PCP and gyn and had cultures. Both were negative. (That's a long story because there IS bacteria in both places but not ENOUGH to dx an infection.) I told both of them that I would ask MO about it this week. I saw MO on Wed. We had the most contentious visit yet. If I take more than 2 minutes of his time, he gets testy. Annoyed. Angry. I'm pretty ready to change oncologists. He said at one point, "I could set you up with another doctor." I think that is what he really wants. To get rid of me. After two doctor visits, (PCP and gyn) being tested for UTI's and BV, I found out I have neither with cultures, it just feels like I do. The estrogen suppression onc prescribes causes it but he wants nothing to do with it. He basically said I can choose to feel like I have a UTI and BV all the time or let the cancer spread (by not taking the Letrozole). He said, "I think you WANT to have an infection." (He said it twice.) Well, yeah. Then it could be treated and maybe go away. I may have to write him a letter and send it or read it to him next time I see him, Jan. 3. I wouldn't mind changing to another doctor in his practice. There are two I have seen and like, especially a woman. I really like all his support people, nurses, money person, pharmacist, etc. Yesterday was just time to decompress. I need to write about it. Writing about it all seems to help. Then I need to write to him. I wish he could realize what he does to me but I know he never will. He is set in his ways and will justify how he acts, at least to himself. I can't think straight when I am with him. Why couldn't I say what I said here?

When you cry lying in bed on you back staring up at the ceiling, the tears run down the sides of your head and into your ears. I did learn that.

Janet Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 9, 2017 12:10AM runor wrote:

Jaycee, oh my good god. It is shocking to me how you can put a man in university, fill his head with knowledge, give him an office and staff and he can still be a genuine asshole. I just this past week saw a new doctor because I had HAD IT with my other regular doctor who could not give a shit less what was going on with me, and on my first visit with the new doc when I said I was on tamoxifen he asked how my sex life was. Which at first I thought was weird but on second thought I realized he was being pro-active. He said if things go south, let him know and he would help me out in any way he could. Wow. I have not had that kind of medical care, CARE being the operative word here, in a long time. It sounds to me that your doc might be KNOWING about medicine but not CARING about his patient. Unacceptable.

Yes. Write a letter. Compose yourself and compose your thoughts. At the end do not leave it open ended but ask him pointedly (using a sharpened stick for emphasis if required) 'what are you going to do about these issues?' Since my late teens I have been troubled with bladder infections and I used to have to run to a doc, pee in a cup, wait for results, feeling worse and worse as the days went by before I got a prescription. Finally I flipped my shit one day and said I am NOT doing this anymore, you fill a LARGE prescription for antibiotics and I will take them at the first sign of an infection and hopefully we can skip the stage where I pee blood! But I am NOT running to your office to piss in a cup another single time! Doc did that and life has been better. I bloody well know my body, know when an infection is afoot, regardless of what the stupid tests say. Tests can be wrong!

I am angered reading your post. I am so sorry this happened to you (hope your ears have dried out!)

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 9, 2017 01:57AM chronicpain wrote:

jaycee49, it sounds like your doc is burned out and behaving unprofessionally. Skip the letter to him. Ask administration for a new oncdoc in your facility, or if there is none, (you are in a tough area to get good service) consider traveling to somewhere there is.

Dx 10/2017, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 11/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy
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Dec 9, 2017 10:40AM Scared67 wrote:

Hi Jaycee - my vote is to write him a letter. Either just write it and send it OR write it and not send it - at all. Either way - it will feel cathartic and be good for your soul.

And, if possible, find another MO. It sounds like your MO lacks emotional intelligence...

((((Hugs)))

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/17/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/7/2016 Hormonal Therapy 11/8/2016
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Dec 9, 2017 01:48PM jaycee49 wrote:

runor, you are exactly right, as usual. I don't cry much, like ever, but I did on the drive home from that appointment. I hope my blurry vision didn't cause any drivers concern. I do have to do the pee in a cup thing or better, bring a sample from home. I buy sterile specimen cups online (surprisingly cheap) and those dip sticks they use. I test it myself at home and then take it in if positive for leucocytes, blood, and nitrites. My urologist wants all three. My gyn (who I love and is retiring Dec.15) said I need a positive culture to take antibiotics. I've been following both their suggestions for years and done ok. 1-2 UTI's per year. When I was on Tamoxifen for 4 months, I had NON-STOP UTI's. Went off it for that. Then came stage IV. Letrozole and Ibrance. I did ok still for first two years. MO said it does NOT build up and keep getting worse. Yes, it does. He took me off both cancer drugs at this last appt (I took myself off) and wants to see what happens. He has already decided that I will not be better. I know that, too. My urologist, who prescribed Vagifem in the past (before cancer), said it takes months/years to mess up (dry out) that area and months to put it back. MO said he has seen a difference in two weeks but finally admitted he was talking about joint pain not vaginal dryness. He has already made it perfectly clear that he has no intention of dealing with this issue. He regularly suggests I go to my PCP, my urologist, or my gyn.

chronicpain, he IS the administration of this facility. Traveling to see someone is a problem when you feel like you have to pee all the time. I have my own autoimmune problems with MS. I hope you have something milder.

Scared67, I think I have decided to write TWO letters. I am walking a tightrope trying to balance my anger with not getting banned from this practice. I'll write one and just let it all fly. Cathartic, yes. Then I'll try to write another, smoothing his HUGE ego some but letting him know I want out. I'd really like to impress on him how his attitude and behavior effect his patients. I'm sure there are others. I know one woman who went to him once and never went back. I've heard several other stories that do not reflect well on him.

I've been writing to my sister and friends all weekend trying to sort this out. One person on my MS forum wants to run over his toes with her wheelchair. Another wants to send him envelopes full of glitter. Both good ideas but runor's sharp stick is the most appealing.

Janet Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 11, 2017 01:28AM - edited Dec 11, 2017 01:29AM by Scared67

Janet - I'm glad you decided to write 2 letters!!! Good for you!! That sounds like an excellent plan!! It sounds like he certainly has a big headed ego!! Ugh!!! I don't understand how anybody could be in the healing profession and act that way towards patients... And, LOL about your friend in your MS forum who wants to run his toes over with her wheelchair - that is classic!!! Envelopes full of glitter are, also, a very good idea ha ha!!! I Love it!!Smile

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/17/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/7/2016 Hormonal Therapy 11/8/2016
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Dec 11, 2017 08:47AM Lula73 wrote:

Jaycee- the OB/GYN who did my hysterectomy/oophorectomy last month recommended something called intrarosa for the vaginal issues. It’s relatively new to the market but brings relief when used daily to put things right again. It non-systemic so ok to use with ER/PR+ bc. I’ll be asking my OB/GYN about it today at my follow up.

In your nice letter maybe you could suggest your MO take some motivational interviewing classes. A lot of times very smart docs have 0 bedside manner and don’t realize the impact they’re having. The other thing to remember is most of the docs outctgesere regardless of specialty were the “nerds” and/or were the shy ones. They were not the jocks/cheerleaders, the cool kids or the popular kids who were always getting invited places. They had little social interaction on a regular basis and have issues responding/communicating in a manner you’d expect. I’m not excusing his behavior, just throwing in the likely background so when you write that letter you’ve got this perspective to work from. Now if he was one of the jocks and he’s acting this way...then let him have it with both barrels!
-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Dec 11, 2017 12:39PM jaycee49 wrote:

Scared67, I've been writing both letters in my head since last Wed. I'm afraid to write the nice one. I always go off in the nasty direction pretty quickly. I'm seeing my PCP today and my therapist on Friday to get some guidance. I'd like to get the whole thing over with soon because it occupies my mind all the time. PTSD for sure.

Lula, I can't take Intrarosa because it turns into estrogen in the body. None of my doctors want me to take any estrogen except my urologist, who thinks Vagifem might be ok. I need to see him, too, but don't want to spend the time around Christmas going to doctors. My son and his wife are going to visit and that's what I want to concentrate on.

I did increase the Luvena I'm using to every other day and that has helped a lot. Thanks for all your support, STEAM ROOM people. I'm considering my next move. Maybe calling my oncology nurse and asking if she thinks he meant "setting me up with another doctor" within the practice or outside.

Janet Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 11, 2017 01:17PM jaycee49 wrote:

I also did some Googling on doctors who bully their patients. Seems to be a rather common phenomenon.

Janet Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Dec 11, 2017 02:32PM Scared67 wrote:

Janet - That sucks about doctors who actually bully their patients. Are they forgetting - that *we* are the customers? Geez...Unbelievable. I would still write both letters...and maybe not send the nice one? Or - write 3 letters? One - to vent. One - nice - but - still getting your feelings out. And - one that you might send. I think after getting your feelings out - more and more on paper - it will get easier. I'm glad you have an appointment with your therapist. They are great at bouncing ideas off of!! Keep us posted!!

Dx 4/13/2016, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 3/23 nodes, ER+/PR+, HER2- Surgery 5/17/2016 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/31/2016 Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 7/6/2016 AC + T (Taxol) Radiation Therapy 11/7/2016 Hormonal Therapy 11/8/2016
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Dec 11, 2017 06:58PM Lita57 wrote:

Lula: Excellent points about many drs being the "nerds" and the socially awkward ones who never learned good communication skills. Imagine having Sheldon Cooper from The Big Bang Theory as your MO, ha ha.

In my limited experience, the jocks and cheerleaders tend to go into sales, marketing and other "people" oriented jobs because it just seems a natural fit for them. One of my daughter's high school friends is going into medicine, and I PITY the patients who will eventually see her. My daughter feels the same way. Hopefully this young lady will focus on research, but I doubt it.

They just don't teach "bedside manner" classes in med school. I'm definitely NOT trying to defend these bullying and/or condescending drs, but that's the way it is. Plus, drs only have about 8-10 mins to spend w/each patient, and that's got to be frustrating.

My clinic has these plastic holders with "grievance forms" in them all over the place, so negative experiences with drs is no doubt a common problem out there. Doesn't excuse the behavior, but it helps to know it's not isolated to one provider/medical establishment.

We all have our horror stories. My MBC was delayed being dx'd for months because my bitch PCP refused to do the appropriate tests even tho I insisted. I'm no longer seeing her, thank God.

L


Stage IV Occult, Amorphic right from the gate. New Brain Mets Aug 2017. I've been dragged into an arranged marriage that I didn't agree to, & divorce is totally off the table now that I'm married to Mr. Cancer. STAGE IV LIVES MATTER! Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/27/2016 External: Bone Targeted Therapy 5/15/2016 Chemotherapy 5/22/2016 Xeloda (capecitabine) Radiation Therapy 4/20/2017 External: Bone Dx 8/23/2017, IDC, 5cm, Stage IV, metastasized to brain, Grade 3, ER+/PR+, HER2- Radiation Therapy 9/6/2017 External: Brain Chemotherapy 10/10/2017 Taxol (paclitaxel)
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Dec 11, 2017 07:32PM Lula73 wrote:

Jaycee- you can always ask your GYN to contact the IntraRosa rep and arrange a discussion with their medical liaison on how it works exactly. Most docs hear the estrogen part and automatically say no. It’s a vaginal suppository that works only on certain receptors in the dermis. The tiny amount that they have been able to document crossing into the bloodstream is not even at a level any lab drs are using can even calculate and even at specialty labs it’s minuscule and considered not a clinically significant change. For all these reasons plus a few more is why it doesn’t have the same warnings as say the Estrace, Vagifem, and all the other creams/tablets. It’s only been out 5 months. When I was diagnosed in Jan, my GYN even wanted the mirena removed due to the small localized hormone amount but was just fine with the intrarosa today (they had just had their education session on it a couple weeks ago.) it was originally recommended by the OB /GYN who did my hysterectomy in NOLA. Ive been researching it since he suggested it after a long discussion on ER+ BC and options for vaginal atrophy

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Dec 12, 2017 12:37AM Meow13 wrote:

My plastic surgeon is a first class Dick H., he is so full of himself. I am sure if I had any complaints or concerns he would be super defensive. Lucky for me he did a good job. Not sure I would go back though. I am not going to see doctors that are not compassionate and treat me poorly.


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Dec 12, 2017 03:48AM chronicpain wrote:

There are sadly many doctor bullies, both nerdlike and not nerdlike, often pushed for time. There are also nurse bullies ( or more commonly and more annoying, indifferent nurses), who refuse to call a doc when they are over their heads. Sometimes they bully each other! And then there are excellent , professional, caring people, still here, usually overworked, we just have to find them.

Doctors and nurses in some areas and fields also face ongoing, almost daily abuse by patients who are bullies, (not just assertive patients, but actual bullies, like patients who call them the N word or degrade the docs' intelligence, e.g., say their advice is "stupid", make unreasonable demands, or even assault them., Medical students and residents now have teaching modules in some places entitled "The Hateful Patient" which try and teach the young docs how to retain professionalism while dealing with patients assigned to them who continue to insult them, do not comply with appropriate recommendations, abuse their time with frivolous emails, are perpetually late, are sexist, etc. They often land up trapped having to see such patients, as they are now, due to financial pressures, mostly working on salary, e.g., few docs are left in true private practice anymore where patients could be "fired." And more and more of us patients are stuck having to deal with big health care consolidated bureaucracies, following endless multisource rules, so we also have less options, and firing a whole medical complex can have financial consequences or create geographical care problems.

We have to fight for our loved ones and ourselves to get the best care we possibly can with the limitations in finance, geography, communication,and time that we have, each of us different in how much effort we can put into it. It is exhausting.

Dx 10/2017, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 11/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy
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Dec 12, 2017 04:27AM Meow13 wrote:

I really just put up with my PS's attitude because he had such good ratings from other patients. He did a good job I guess that is what really matters but wow he is arrogant.

Hi Lita, good to see you posting. I am kind of upset with my youngest son. We tried calling him for a couple days ago, no answer. Tonight I had to call my oldest son to see if he knew what was up. He said his brother just doesn't feel like talking, didn't know if he was depressed said he was ok. Makes me mad 22 years old just pick up the phone and say a few words to us. Ugh.

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Dec 12, 2017 09:25AM Lula73 wrote:

meow-I feel your pain on grown children not picking up. Have you tried texting him? This generation of young adults seems to prefer communicating thru text even when they’re not wanting to talk. My DIL won’t ever talk on the phone. It’s text or nothing. Its frustrating, I know.


-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal

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