STEAM ROOM FOR ANGER
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I need a f’n roof. Waiting for my homeowners insurance to cancel because I need a whole f’n roof. All my husband wants to talk about is f’n camping and buying a camper. Did I mention that I need a roof. Ion April I will have to switch to Medicare. What a joke, right? Save me a hundred bucks a month in premium, but NO out of pocket cap. I already have freakin debt collectors every day. The AI’s are killing me. My mother in law dumped my Fad on me when he had a stroke. And yeah, what’s with the hair. It won’t grow where it is supposed to and everywhere else I look like a Wookie. I have a 4” incision on my back that still hasn’t healed enough to remove the stitches, but at least soon I be able to use chin hairs to see it back up.0
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I’m sorry. That just really sucks
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I have no idea why he is not interested. We see my oncologist on Wed. For him and I imagine the Doc will mention it then. Lol..my results were good...same 5 or 6 tumors that are left are sleeping.
Hubs will do a lot of the Christmas dinner at our house for 13. And he will do all of the dishes. His family will be here including his 95 yr old mother. Love them all. My SIL also. Had her 2 pos. Idc but no mets.
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Christmas doesn't mean anything since my fam aren't religious. When young of course excited for gifts. Got older and less excited about gifts and more about giving. But now everyone is older and worried about medicare and social security and such that no one wants gifts even low cost ones. It's save your money! Im not angry, just used to be more relaxed about gift giving. We don't do decorations and there's a few fam homes here where everyone takes turns hosting lunch or dinner so it's never a who's going to host thing. Everyone gets a turn who isn't single or broke.
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OK, here's a new one. (I went to my therapist on Friday and told her the whole MO mess and she said if he reads that letter I wrote, he will throw me out of his practice. Whatever.) She told me about a health issue she is having. I have been seeing her for twenty years and we are friends beyond patient/doctor relationship. She went to the only GI practice in town but it has 4-5 MD's and she got one I would have liked to see. I go to the original guy and you can't switch within the practice. Anyway, this doctor did a sigmoidoscopy (she had recently had a colonoscopy) and dx something that he told her about in a LETTER. That letter also included that a prescription had been sent to her pharmacy for a three month supply of a STEROID. Is this how we are going to do things now? A LETTER with dx and rx info? She is feeling better and didn't fill the script. Plus it was $8000 co-pay. What is happening?
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2017 can just suck a lemon. My year in review:
February - found out that what I thought was a cyst was in fact breast cancer. Mammo showed DCIS in the other breast, too. Lucky me. Doctors said it didn't appear to be very advanced, and I'd just (HA!) do surgery and radiation.
March - Lumpectomy. Found out that the cancer had spread to the lymph nodes, so now I had to have chemo.
May - August - chemo. Fun.
September-November - radiation. More fun. I was one of the lucky ones that got moist desquamation in several places. I also had two delays because of positioning issues. Bilateral breast cancer is fun.
Sadly, the cancer wasn't even the worst part of the year. In October my nephew committed suicide after a long battle with addiction and depression. Then, because apparently my family needed just one more thing this year, my father passed away unexepectedly a little over a week ago.
*&%$ off, 2017. I need a new year.
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lovepugs77--
so very sorry for the loss of your father and the loss of a nephew..... all while undergoing BC treatments and recovery.
Sending you a big hug and will keep you in my prayers.
2017 needs to be kicked to the curb and beyond.
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Lovepugs, I am so sorry to hear about everything heaped on your plate. Yes, this year can take a nose dive off a cliff.
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love pugs - I just saw your post and even though it was a while back, I'm so sorry for your losses, especially so close to the holidays.
I didn't even realize there's a rant page, but now that I found you, here's my rant. I get so pissed at the people who compare having cancer to a car accident, a broken bone, or something like that. I was told I am cancer-free, but that doesn't make it go away. It's always right there, lurking. It's like having a restraining order against an old boyfriend but never knowing if or when he's going to come after you again. Don't compare your broken leg or your accident to my cancer. Yours was a once and done event. Mine lives with me forever.
And another thing. Don't raise those eyebrows at me when you find out that I'm taking Zoloft or Xanax. You have no business judging me unless you have walked in my shoes. Quit telling me how lucky I was that it was "only" Stage 1A. Look at me. Do you see any breasts?? Yeah, I was lucky that I had nothing in my lymph nodes. Unlucky that I had 3 tumors in different quadrants of my breast. Unlucky because they weren't sure about the other breast. Yeah, really lucky. Yes, more fortunate than a lot of you because it was a low stage, but cancer is cancer
And instead of saying oh great, your cancer is gone so you can move on with your life, have some compassion and ask how I am once in a while. The physical part of this was easy. But I am still dealing with the psychological and emotional issues.
Thank God for BCO!!! I love you guys! You are keeping me sane!!
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The hair thing...definitely can relate to that. Cancer.....it just keeps on surprising you with side effects, doesn't it?
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I don't even quite know why this is making me angry but...
days after my diagnosis someone very close to me ran out to get a pink ribbon tattoo. It's in a highly, highly visible place too. I guess it's supposed to be to express support but it just seems like they're making it about them.
They also ignored a request I made about who I wanted with me in hospital.
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Raine - I see your posts crossed within one minute of the other. I was empathizing with some others on anger and cancer. I see you are exclaiming in anxiety that your house needs a roof and money is too tight to find and it is just getting worse. And your father-in-law??? is now living with you and he had a stroke!!! What? And you seem to have had back surgery? Why would she? Where do people come up with these ideas of what is okay? I wail at the wall for you.
Lovepugs - Indeed, a hard year especially when it ends with people you love dying too. Hugs for you.
Runor - don't you just want to sit there in your big girl panties and robe and blankie and let everyone cook, clean and bring you food and drink. I read once of a woman who was somewhat elderly, not old old, she died from cancer. Her son, who talked about her like she was a saint, said just three days before she died she was taking care of everyone, cooking, cleaning. I wondered, why would you let her? I am fortunate, Hubby would shop, cook for all and clean. My sister has offered to buy the whole dinner and come and cook it. There may come a day, but no, we can do it just easier than usual. I am baking ham, Hubby will make mashed potatoes, my gravy hopefully. Used to be potatoes scalloped. Sis will make broccoli (used to be broccoli cheesy au gratin) and open jars and help out. This year I am saving us the dessert baking, getting already made pies. Candy and cookies and cracker spreads are store bought this year. Last year, I pushed and crashed. This year, cannot even try. But I do miss my brother and his family and how holidays used to be. And my daughter will not be here since the ocean is between us.
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Raine - I see your posts crossed within one minute of the other. I was empathizing with some others on anger and cancer. I see you are exclaiming in anxiety that your house needs a roof and money is too tight to find and it is just getting worse. And your father-in-law??? is now living with you and he had a stroke!!! What? And you seem to have had back surgery? Why would she? Where do people come up with these ideas of what is okay? I wail at the wall for you.
Lovepugs - Indeed, a hard year especially when it ends with people you love dying too. Hugs for you.
Runor - don't you just want to sit there in your big girl panties and robe and blankie and let everyone cook, clean and bring you food and drink. I read once of a woman who was somewhat elderly, not old old, she died from cancer. Her son, who talked about her like she was a saint, said just three days before she died she was taking care of everyone, cooking, cleaning. I wondered, why would you let her? I am fortunate, Hubby would shop, cook for all and clean. My sister has offered to buy the whole dinner and come and cook it. There may come a day, but no, we can do it just easier than usual. I am baking ham, Hubby will make mashed potatoes, my gravy hopefully. Used to be potatoes scalloped. Sis will make broccoli (used to be broccoli cheesy au gratin) and open jars and help out. This year I am saving us the dessert baking, getting already made pies. Candy and cookies and cracker spreads are store bought this year. Last year, I pushed and crashed. This year, cannot even try. But I do miss my brother and his family and how holidays used to be. And my daughter will not be here since the ocean is between us.
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Lost a post.
OK Update on BC specialist MO who is a turd. The letter was written and I held onto it for 5 days. Last draft. His office knew I cancelled my Aromasin / Afinitor training, not taking it and why. No one called w the appt to review possibilities either, though I would not have gone back to him. Cannot trust this MO. He gave me the impression the A / A I chose which he offered to me!!! was fine with him. But in cc'd notes to my DNP he said he thought it would have very little effect for me. THEN WHY OFFER IT TO ME?!!! Just to watch me die? So I wrote the letter and didn't know what to do.
Yesterday had appt w thyroid specialist / surgeon there and found out I had a counselor appt after. Lightbulb. Hubby and I talked to her on how to proceed. She hand delivered the letter to the MO. She also said if it was her (because I asked what she would do to gain expediency) she would get a copy to the boss of him, director of entire center. And the 2-pg dialogue of concerns and reasons are in a different envelop, offered to him to read if he wants them and only if he asks. I don't know if the boss will want to read them but they are pretty damning, in my opinion. So we did gt it done. And now I wait.
I am so angry. So extremely dehydrated that my skin is old and shriveled like never before. Even the underarm of my forearm. Even my butt feels dried up and I have always had a soft butt. I am silver. My hair has turned greyer and straight and it it naturally very curly.
He should have had my on hydration on Nov 22 appt. I could barely wait to get to that appt for this one reason and getting tx set up. Told him and nurse I was dehydrated severely then, no comment from him. Thought he would leave room and tell nurse to set it up, but he just left. And so he didn't. Dr. G would have, but he is gone. Dr. D would have but he is a temp onc. Then today I get an exciting newsletter from center about how there is a ***new*** HYDRATION / infusion / lab department. And I just was furious because I need hydration. Can barely stand to swallow water that is room temp, it feels so cold and every swallow hurts. Tomorrow morning am going to call my DNP and request they set up for ER in Rochester to give me an IV hydration. And yes, this oversight on the MOs part was in the letter in short version of concerns and reasons and long dialogue by me.
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Bluebird, so glad to see you here. I am still in MO limbo but I want to spend five precious days with my son and his new wife. They arrive tonight. Most people think my letter will get me kicked out of MO's practice. I do not want that. The Cipro was killing me so I stopped after 5.5 days. They always forget I have MS (neurological disease) that works badly with Cipro. My neuropathy is through the roof and crotch still on fire. I read the entire UTI thread here today. Lots of good ideas including topical estrogen. How I yearn for some estrogen. All doctors nix that. Just give me five descent days with my son and I will forge ahead. Please.
Bluebird, I concur. Idiot.
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Bluebird, what an ass! Nice to know what can be expected from some of these MOs.
“But in cc'd notes to my DNP he said he thought it would have very little effect for me. THEN WHY OFFER IT TO ME?!!!
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Bluebird, I hope you get some positive resolution to this ongoing bullshit. Isn't it awful when egos and medicine collide? Patients are the losers.
I have called a halt on this year's Christmas. Not helped by the fact that I just spent the past 3 days in bed with some horrible gut bug. It's the most rest I've had since this whole cancer crap started. And now Hub came home from work and went straight to bed moaning, so it looks like it's making the rounds. I have announced that I am making jambalaya in the crock pot and grilled cheese sandwiches. And not inviting anyone. The inlaws this year will have to dine elsewhere. I have them every year (when there are other family members who could step in for a turn but don't) so I think I have earned a break. So I plan to put my big girl panties on my head, my slippers on the wrong feet, my shirt on backwards and just let the slow cooker do its thing while me and a bottle of wine slowly get cooked!
As to things making you mad ... it is odd what stands out. I remember back in the beginning, when I was waiting for the results of the surgical biopsy, a lady that I know sort of laughed and shrugged and said, "Oh, you know how you tend to over-react to things, it's probably nothing". It took all my energy not to slug her. Nothing? Blood tests, lung x-rays, meeting with anesthetist, consult with surgeon, scary mamm and ultrasound, injections in my nipple, a 12 inch wire jabbed in my tit from armpit to nipple and then while thusly jabbed, a one hour ride in a truck to another hospital for actual surgery...I tend to over-react? Bite me, b#*ch! Yeah, that one stayed with me a long time. And then oh, gee, it IS cancer, seems I was perfectly justified in being scared to death. People are idiots.
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i would have said.....hey lady ....🖕Over act to this. Unreal people should just shut their mouths! I saw someone the other day who I knew back before cancer and I used to work out at the gym. She said to me. "Oh just say to yourself, I just don't have cancer and that , it's gone. No more cancer. ". I was like dumbfounded and actually was stunned someone could be so obviously stupid. No one gets how straining and difficult having this disease is! Bravo to you runor for saying, I am just not doing it. That's awesome to take that stand for yourself. I hope you feel good about that! Because you should. I hope everyone sleeps good. Goodnight. ~M~
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Am trying to flip my wrong schedule, have been going to bed at dawn then sleeping until dusk. So took a little hemp oil and 5 mg melatonin. Wanted to wait until it kicked in so did the spider solitaire puzzle for day. After 14 attempts I finally got it in 113 moves, all else didn't win at all. Usually get it in 1 or 2 tries. So maybe the melatonin had kicked in father quickly. Ya think?
Sorry meant this sfor insomniacs tread. On iPad so have to post or will lose it. Enjoy anyway.
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It is now officially in my brain. I am a hospice patient who has not signed up yet.
Perhaps I say, perhaps, Hubby and sister and daughter are not the ones in denial. Perhaps it has been I.
Good news is one can be in hospice for a year, I read that somewhere and they usually do not utilize the service for more than a few months.
So if I go palliative for a year, then hospice for a year and die on schedule then I would get two more Christmases after this one. Live longer than my Newfie, pretty sure of that, it is important to me to do that. And have time to travel and read and paint and take morphine.
My goal is to find an oncologist that thinks outside the box and doesn't do one-size-fits-all protocol. And values my life. Because what follows is just not acceptable behaviour.
After a hell of a day yesterday w liver met issues, ended up w palliative nurse today and a prescription of morphine. Seriously, for overly-drug-sensitive me, *morphine*. A drop at a time is all I will try and then by the ambulance center.
Very clearly told me there is nothing they can do but palliative care, nothing curative. Well, hell, throw that word around some more. I am not a fool. No one says "cure cancer" now do they.
The next step is the two given me, A / A OR Taxol. I chose neither and for very good reasons like I could die even sooner or I could die even sooner. They would want to first give me Benadryl, cannot take it. If I have allergic reaction to Taxol then they give me more Benadryl and dexamethasone steroid and I am highly allergic so what would they do next? And the A / A if pneumonitis again, then I suffer w it for months or a year. No steroids for me so I could get well, last time had it for 4 months with no treatment. And if my lung collapses again I could lose it. And there is already a 3% fatality rate recorded from trials. My risk is even higher.
So while the Dr. Turd went off to holiday I am left w no transfer to Dr. A that I want and no real hope of a transfer to a different oncologist in the center. But I do have the thyroid speciality / surgeon. And thus for time being the team. That's something.
But still am stuck w Dr. who left me with this message at first meeting and more from nurse today, who was attentive and kind but very sincere too:
- I am a goner.
- I am a hospice candidate right now though we won't likely use hospice "in the next few weeks," I quote. And he did mean me when he said it, not a general consensus for all intake patients.
- Palliative care is dealt w as it comes, not planned for. Even pain. No one warned me of this level of pain, thank goodness for BCO threads and people who build them.
- There is little hope of an effect from the A / A.
- And the Taxol is probably going to be too much for me.
- And oh yes, I have no other choices. because these ARE the next steps. And then there are other choices. That was from his nurse today.
- And there is no going back to what I have used. Insurance would never pay. she said.
My sister is railing against the wind, she is so angry. Hubby was up w me all last night and today due to the severely extraordinary liver pain / shoulder pain. I tried to turn over in bed and was at a level 9 pain in upper right abdomen. Crying, I managed to get to computer to research - yes, of course I did - and then when I got up to walk back to his room to get him up and go to ER I couldn't stand up straight and walking was hard, yelling for help but no volume. Where is that megaphone siren?
I did not say hospice to my sister but we talked all around options of getting somewhere. She knows. Time is of the essence and all that. But I definitely did not tell daughter enough to make her worry. I don't know how to do this. I am very bad at this.
And last night I finally came across the wall of names of those lost on BCO. The list runs on and on and on. I recognized some names, Fuzzy Lemon, Veggy, Dunesleeper, and more and more. I knew they had gone on and how hard it was on them and then I found their names and cried but I don't get to cry because it hurts too much - real pain to laugh, sneeze, cry - so I try to cry and cannot do it.
Bar my thrilled excitement for having about seven options to make a choice on by Tuesday morning. Always on a weekend and holiday.
The pain has been a huge and serious turning point for me.
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I'm so sorry for this current terrible news,Bluebird. But not ready to give up on you. For heaven's sake, why can't they give you Abraxane instead of taxol, no benadryl or dexa required?
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Bluebird, I didn't know how to cheer you up except with a picture of my Newfie. We had him when my son was very young. Best dog ever. I really wish you could get what you want/need from the medical establishment but I know how unlikely that is. They make you work for it. Not the way it should be.
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Bluebird - thinking of you...sending strength and fighter vibes your way...and I agree with ShetlandPony...gentle (((hugs)))...
Janet - I love that photo!!! It put a much needed smile on my face...adorable!!!
I can't wait until the holidays are over with. Done with all the Christmas music...like the Grinch...I can't stand all the Christmas "noise!"..
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Bluebird, I am shocked. How bad are the brain mets? Can they radiate or are they just gonna brush you off?
This disease can turn on a dime.
As Stage IV women, we are all "goners." It's just a matter of WHEN that will happen.
My 20+ brain mets are growing again. It's getting harder for me to think and find words. More pain and dizziness, They won't do any more radiation to the brain since I already had Whole Brain Rads in Sept. (BTW, my brain rads were considered "palliative.")
I no longer have anal sphincter control because of spinal mets. I can't do kegels anymore, so it's just a matter of time til I lose all bladder control as well because the numbness is spreading from both butt cheeks, down both thighs, into groin, etc. Having a spinal MRI next week, but don't know if they can re-radiate. Already had rads to spine twice.
As far as pain is concerned, do you live in a "green" state where Medical MJ is legal? Opioids do absolutely NOTHING for me. I take CBD (non-psychoactive) tincture and edibles when I need them. Rx Volterin Gel (very strong, but doesn't smell) works for a while on my back. The liver pain can bring you to your knees. I hope you can get that resolved in a way that doesn't kill you. Have you tried fentanyl patches or are you allergic to that, too? Methocarbamol and muscle relaxers don't work for me either.
I wish I had something more positive to say. I cry for you. This sucks. I had hoped I would have at LEAST another year of relatively decent "quality." That is not to be the case now. I badly soiled three pairs of Depends the other day. If there's anything in the poop shoot, all I have to do is stand up and......you got it! The solid pieces aren't such a problem, but when I have loose stools, whoa Nellie! Fun, fun, fun. I have to sleep on those blue pads just in case it leaks out during the night.
My blind spot is getting worse. Going to the opthamologist first wk of Jan, but I doubt he'll be able to do anything for me, other than pat me on the back and say, "Enjoy your eyesight while you still have some. It will gone b4 you know it."
Merry Christmas to the both of us, right?
L
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I think Bluebird meant it’s finally gotten through to her “brain” the option of palliative care and hospice. Not that she hasbrain mets. Will have to wait until she comes back to clarify. No less lousy options.
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Bluebird, Lita .... (shaking head) at a loss for words.
I pray that you both find whatever it is you need to get through this. I don't even know what that might be? Strength? Peace? To hell with it? It's a rotten day when you think people dying of heart attacks are the lucky ones.
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Runor - Exactly! I used to feel sorry for people who had heart-attacks. Now, I know what real medical hell is...
I'm angry for what this disease has stolen from us: our peace of mind, our physical appearance, our money, our time on earth, our health...and left us feeling broken, unrepairable and painfully ill...
F*ck BC. I'm so mad right now - that - its 5 am and I can't sleep.
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I know a lot of you are hating Christmas but I’m so thankful im here for another one with my loved ones. I feel like I’m so blessed and to top it off I found out yesterday that my tumor marker is down to 58.3. I started to cry tears of joy.
Not everything is a bowl of cherries though . Hubby found out his cancer is grade 4, very aggressive. He will be having his prostate removed in February. I’m very thankful I am feeling better so I can take care of him for a change. Hatethat he has to go through this.
Hope everyone has a blessed Christmas and just be thankful we are are all still here.
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Heart attack victims ARE THE LUCKY ONES!!!!!
They don't have to go thru MONTHS (if not YEARS) of misery like most of us do.
Sorry to be so negative, but that's the way I'm feeling this morning....having to UP my steroids to deal with growing brain tumors is making VERY cranky and edgy.
L
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