STEAM ROOM FOR ANGER
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runor and bluebird, I was wondering if I could suggest a slight tweak to runor's number one idea for the service/celebration whatever. It is actually an addition. How about having more than one lover show up to speak, from a variety of several and sundry sexual orientations? When I was divorcing my first husband, straight and gay friends both volunteered to claim extramarital affairs with me. (How that was supposed to help me, I have no idea but I was touched by their generosity.) Wouldn't that add some interesting drama to the festivities?
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Why is it that whatever DH is doing is more important than that I am doing? He called me FROM THE ROOF right when I realized I had posted in the wrong thread. He claimed the dog was trying to climb the ladder to get up to him (he is the dog's alpha person) and I needed to come outside and watch him so he wouldn't break his leg climbing the ladder. Is that steam room material, or what? He was up there for over an hour. I was in the process of moving a post to the right thread. He was investigating a new leak on the roof. Yup, what he was doing was more important. It still bummed me out that I had to stop what I was doing. And the dog would NOT have climbed the ladder.
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Lost my nephew last month to cancer and my uncle to it last night. eally makes me angry to see all the money wasted on dam commercials instead of research!
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I hear you, Dianarose.
The Amer Cancer Society just sent me one of those "Please Send Money" requests. I haven't sent money to them in years. Why are they sending me requests now?
I'm torn about sending $ because altho I'd like to, I'm on SSDI, and don't have the funds I used to have when I was working. Plus, even if you EAR MARK the funds with a comment, saying "Please allocated to Stage IV research..." etc., how do you know that your check will actually GO TO THAT PARTICULAR RESEARCH?
It enrages me that whenever I give $ to some cause I seem to get an envelope in the mail every other month asking for even MORE $. Is that what my donation dollars are going for? Merely more solicitation requests and the postage to send them out in the mail? Geez!!!
And don't even get me started on"Komen for the Cure" and all the money the administrators make. I'll explode.
L
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I am not always funny. In fact, rarely. Often I am serious. Dead. Serious. (I am making a really serious face right now. Like, really.)
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Janet - I wish you have a puppet that looks like the dog, you could have gone up the ladder - I know, yeah, right - anyway...... and puppeted the dog along the edge then dropped it. That would not nice, I know.
Yes, the stamp, envelope, person to do the marketing and the roof to do it under w ac and heat and insurance.
Runor - stop making serious faces. *______*
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Okay. This is me not being serious. Man, I'm good looking!
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🤭 simply smashing!!
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I'd say more smushed than smashing.0
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Recently discovered only my husband's name is on our house of 35 years. I have records of waranty deed sales in both our names. Now I need to fix it, I hate dealing with the government. We never knew this until we paid off the morgage and started receiving the property tax bill directly. Who says they don't discriminate against women. I have worked every damned day of my life outside the home and the past 10 years earning more than my husband.
Really hacks me off.
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Janet, Is this your dog? I see why your DH was so worried!!
https://www.facebook.com/bulldogworldd/videos/1941362726126722/?t=92
(Its a cute video and short too. The scene starting at 58 seconds says it all though. LMAO!)
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Runor - you have nothing on me as I was born looking like grumpy cat. Someday I will scan the baby picture.
Meow - I hope you can get this fixed asap. Yes, discrimination was and still is alive and well. You probably even said back then, both names. And / or . And they ignored the wishes.
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Meow, My dog is a Brittany. They can be taught to climb ladders but ours has not. Brittany's are known for being good at agility competitions but DH was overreacting. It was just bugging me that what he is doing is always more important than what I am doing. How can that be? I want to be important again.
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I am going to run some clips of appts w the current oncologist.
appt 1 - Me: I am seriously allergic to steroids now. Dr: Then if you aren't allergic there is a long list of chemo and options. (I envision 35 possibilities) If you are then the list is much shorter. (I envision 6 possibilities.)
appt 2 - Me: Could you please give me a few options you are considering for when I can tolerate stronger treatment, ones that I can take and not need steroids. He writes 2 names, navelbine (semi-synthetic) and gezmar.
appt 3 - Dr is surprised to learn I am allergic to prednisone and Benadryl. Dr: If you are allergic to steroids then there is virtually no chemo you will be able to take.
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appt 2 - The conversation did not cover a lymph node that had doubled in size and is on my carotid common artery, left. Then the size of 2 sugar cubes side by side. 2.5 cm x 2.5 cm
appt 3 - Me: I am concerned about the lymph node on my carotid artery. Dr: looking up the lymph node that is on my carotid artery like he does not know STILL that it exists. Oh, here it is. And he turns to me and said, you can be concerned about that but it is no more threatening than that your liver is full of cancer (Me thinking I have two big lesions and one small so what is the big deal really when others live with more, but I could be wrong). Dr continues saying the cancer is all through your body. I hate to be flippant or anything but that is what we are dealing with. Me: speechless.
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same dr at appt 1: If you get stronger you will be able to use a chemo infusion. (Note, in my chart and in conversation I had explained the level of allergic reaction to prednisone.) I looked forward to the chemo being an option because otherwise the aromasin was said to maybe give me a few more months, he said that.
appt 2 - Me: I am walking now and eating better. But still not doing much physically. I will try this month to gain strength.
appt 3: Me: I had two good weeks then it all drained away, I feel like I am losing now. My appetite is worse than ever, feel so sick inside. I feel like the aromasin is not working. The supraclavical is all swollen from lymph nodes that were cancer before. I don't need a scan to know this is worse and I feel worse. Dr: A scan is scheduled for April 6. You will need to have labs two days before, here or Goshen?
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same dr appt 1 - encouraged me to check out palliative care, not hospice.
appt 2 - Me: I have signed up with the Dunes Hospice palliative care program.
appt 3 - dr talks to me about the palliative care programs I could sign up for. Me: I should have the information in my chart now. I am with the Dunes Hospice palliative program. Dr: Hospice or palliative. Me: Dunes Hospice is their business title. Their palliative program. NOTE::: Time wasted that could have been used for real work, imo.
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same dr - appt 1 - Me: I would really like to go back on the Faslodex, see if it works this time. Dr: It looks like you had progression. Me: I haven't been on Faslodex for almost two years though so maybe it will work for me again like it has for others.
appt 2 - Me: I would really like to try the Faslodex. Dr: Well, it's not illegal for you to go on the Faslodex. Me: Then if insurance pays, I want to try this.
appt 3 - Me: Will insurance pay for the Faslodex? Dr: We won't know until I blah blah blan and the insurance company decides. Me: I thought that might be the plan this time, especially if I was not strong enough for chemo. Dr: There was progression. Me: I was on Faslodex with Arimidex and it was rapid response, worked longer then anything. Dr: No Arimidex. Me: Aromasin then? Stay on the Aromasin and have Faslodex injections? Dr.: No, Faslodex is never given with aromasin. Me: Then with Femara? Dr: No, never together. These are always given on their own. ME: IN MY SCREECHING BRAIN I SILENTLY DECIDE THIS IS IT, NOTHING TO TALK ABOUT.
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As we walked down the hall I said to Hubby, Follow my lead, don't say anything.
We get to the front and he tries to steer me to the right desk. I say no. I keep going toward front door. Hubby asks in front of the receptionist, don't you need to make the next appointment. I said no. The receptionist asks same. I said, I have to coordinate my life first.
Thanks a lot Hubby.
And yes, I walked out without making another appointment.
Long story short - he gave me hope of going on a chemo I could handle and even without needing steroids. And he snatched it away because he was never really listening at all. I was not a real patient to him. He had no memory of me from one month to the next, none. I was just fooling myself.
Motto: He's just not that into you.
I WANT DR GOK SEL !!!!!
My heart is broken. I am out here again. On the iceberg.
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Oh Bluebird, I am so sorry. You hope the Dr. would track what was said in one appt. and look over your paperwork before the next appt., we know they are busy, but that is their job, they have to realize they deal with people, we hope, feel, think, treat us well. It is really disrespectful for him not to listen to you. I would be upset too, I am upset for you..
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💔 bluebird~ just simply NOT ok for Doctor to act that way! I’m so sorry you had to deal with that. Just royally sucks. Anything dealing with this disease. I am so very sorry. ~M~ huge hugs of support
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Problem is being fixed. Sometimes I get pretty fired up.
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Bluebird, I am having sad and angry feels for you. Hugging you even though it makes nothing better. Sorry, my friend.
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Bluebird. My first reaction was PUNCH HIM IN THE FACE. I’m not normally a violent person. But dammit, someone needs to get his head out of his arse and listen. I’m so sorry you have to deal with that.
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Bluebird, that just sounds normal to me. Remember from one month to the next? Never happens. And I always hear people talking about their "teams," like their doctors talk to each other. None of mine ever have done that. My old MO called my therapist once just to see how crazy I was. Every appointment with my MO, they have you fill out a form with current symptoms. The form goes through all body systems. Do you have this, do you have that? I'm pretty sure no one ever looks at it. I've always been tempted to write something outrageous on there just to see if I get a reaction. I think my right leg is about to fall off. When my lymphedema was starting, I wrote something about my left arm being swollen. No reaction until I told the nurse and doctor. And there is NO question on the form about limb swelling. These are ONCOLOGISTS not watching for lymphedema. There is a question about joint swelling but lymphedema is not joint swelling. That reminds me. I need to mention to them that they need to ask about limb swelling. I did before with no response. No doctor since my surgery ever mentioned the risk of lymphedema. Not surgeon, not RO, not MO. I was talking constantly before my son's wedding that we were flying to FL for the wedding. NO ONE said anything. When I got back BAM, lymphedema. Sorry about veering off in a new direction. Oh wait, we were talking about idiot doctors. I'm right on point. Sorry you have to deal with them, Bluebird. Yours sound especially dim and non-responsive. Not listening, not paying attention. Once in a "discussion" with DH, he said, "what do you want me to do?" I said, "pay attention."
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B"H
Bluebird-DE that is just so so unforgivable and horrific.... in such a serious condition what you deserve full-heartedly is exactlly the opposite of what you received from that doctor...
with you... hugs and prayers....
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I had to revisit this for the sake of newbies and those who just don't know this yet. The reason I was screeching in my mind (in the last post I made above) is that this BCO support group gives us knowledge that the MOs do not expect us to gain. Like this - Faslodex can and is given with other treatments. Including other aromatase inhibitors. How does it work? "Faslodex is an estrogen receptor downregulator (ERD). Like tamoxifen, Faslodex works by blocking estrogen receptors. Faslodex sits in the estrogen receptors in breast cells. If Faslodex is in the estrogen receptor, there is no room for estrogen and it can't attach to the cell. If estrogen isn't attached to a breast cell, the cell doesn't receive estrogen's signals to grow and multiply. Faslodex also: reduces the number of estrogen receptors and changes the shape of breast cell estrogen receptors so they don't work as well." from BCO
Here are a few combinations I found on BCO and from a quick Google search.
- Ibrance, Xgeva and Faslodex.... started at the same time
- Ibrance/Femara/Faslodex and Xeloda together
- Faslodex + Pablociclib(Ibrance) treatment combination
- Afinitor and Faslodex combo
- Faslodex with Xgeva
- Faslodex in combination with IBRANCE (palbociclib) or Verzenio (abemaciclib)
This is why we have to know something, anything so we can know when to throw in the towel and move on. Because these doctors are not all on our side. They are in a pocket of time. A financial goal. Mind other places.
Yesterday my palliative care nurse politely suggested he was having a bad day perhaps. I said, not on my time. I am trying to stay alive longer. He had two other appointments and he forgot who I was. What was said. Needs expressed. ALLERGIES !^*#@^^* spoken of in detail and photos shown to him. Not on my time. No bad days allowed, especially at that degree.
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btw - at this appt, the 3rd one, he really did not stop messing w his computer once, checking factors of my case I hope. Trying to find out just who I was perhaps. I have never had an MO so busy while I was sitting there. Dr. G checked things to share w me. Dr. K just sat and listened and talked. Dr. D was busy but it was all about answers for me. Last two were temps after my primary MO moved. Dr. B after I couldn't wait for a new solid team at the center - Dr. B had his list of all the doctors I had been to even my DNP and endo and Rheumatologist, what? and was going through that to challenge me about running from one to another. Then Dr. S, last one.
Just saying, I am almost 61, I have had a lot of doctors in my life, I know how they should and could act w a patient.
Trying the primary center I left to see if there is yet a new team to fill Dr G's place. I guess I feel like I just want to go home. Am I starting to not care what happens to me or if I live or die? No. But sooner or later I suppose one would feel that way. Or get up and fight harder.
JANET - yup, I know you know it feels normal. How is it going w your new MO now, after a few months w them?
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Oh Bluebird that just stinks! Doc does have a lot of patients but they sure have your file and should be able to read a chart before they come in to see you to figure out who you are!
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I don't really know yet, Bluebird, but thanks for asking. I've only seen her once (the new one) and will see her for the second time on the 28th. That first time, she walked into the exam room, me all in excited anticipation, and asked, "when was your last Pet/CT scan?" I'm screeching in my head, "YOU DIDN'T LOOK?" Obviously not. I said, "I'm not sure exactly. Do you want me to look it up on my phone?" Most doctors don't like you messing with your phone while they're with you but she said yes, if you wouldn't mind. Not a perfect start for her in my eyes but I'm used to it. Isn't everyone? Do some people's MO's actually look at their charts BEFORE entering the exam room? Even though I will be incredibly jealous, please tell me they do. This new one wants to do Pet/CT every three months, strictly by the book. I'd rather wait maybe four months to reduce anxiety and not give my drug insurance an excuse to stop paying for Ibrance. I assume that with any little abnormality, they will cut me off. I'm going to be open minded about this new doc. Give her a few more visits. DH assumes I'm not going to like her so I'm holding judgement. I WANT to like her. At least I want her to be like a PCP I had once who just did whatever I wanted. That's the ticket, right?
I have noticed that doctors tend to say things however you will be least likely to understand. My gastro once said something was autonomic because he didn't think I would know what that meant. Guess what? I did. My MO's have always used generic names of drugs when discussing them. I can memorize generic names of drugs with the best of them but why? Brand names are always easier to remember and say. Why add another level of confusion. I'm confused enough. So, I'm going to ask her if we can wait four months to do the next scan and also can we use brand names to discuss drugs. I want to know what she has in mind for me next. I think she used the generic name of Aromisin with whatever (probably Afinitor, aren't those taken together?) but I'm not sure.
Just had a wonderful lunch with my old lady friends, none of whom can hear much. Lots of yelling in the middle of a crowded restaurant. So fun, although I am hoarse as a result. I can rest my voice now. No one is paying attention here anyway.
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I am paying attention.
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as I am as well. I don’t follow many threads. But this is one I do! Letting stuff out is so much needed ! Hugs Jaycee. Glad you had a good lunch with friends. ~M~
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When I said "here," I didn't mean here, the forum. I meant here, like here home. Well, the dog pays attention but only when related to food or petting. DH pays attention but only when related to his guitars or motorcycles. He might like the petting part, too, but a different kind than the dog.
I know you guys pay attention. Plus, how helpful it is to write our miseries out, even if no one is paying attention.
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jump ship- so sorry you're having a difficult time right now. Did the new GYN say why she thought you are at higher risk for getting cancer in your lady parts? Maybe that would help. You are right that you can have your breasts removed and still get breast cancer. The difference between breasts and the other lady parts is that the breasts are tissue and the other lady parts are organs. When they remove the organs they get it all. When you remove tissue there is still the possibility that some very tiny amount of tissue was left behind. None of this fair, that’s for sure!
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