STEAM ROOM FOR ANGER
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Just pain mad here it is New Year's Eve and my mom's 80th birthday and all I can think about is stupid cancer and the pains I have from it.
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I did it. I dumped my oncologist. I'm a little embarrassed that I did it in a cowardly, backdoor sort of way but I did it nonetheless. I always go to my nurse first to get blood work. I asked her if patients have switched between doctors in the practice and she said yes. I told her what my MO had said to me at our last appointment, that he could "set me up with another doctor." And that he also said, not once, but twice, "I think you WANT to have an infection." He has said hurtful things to me before but that was the last straw. She said all I had to do was call the nurse manager person and explain and I could switch. I saw the doctor for my appointment but kept quiet about this and just did my usual listen to him and not say anything except the equivalent of "yes, sir." I went back to my nurse for my bone shot and she checked me out, making my next appointment with my new doctor. This is a woman doctor who has been with the practice for a few years. When I run into her, she is always friendly. I told her that she is the one who called me back several times on a weekend when I was having a problem. (Another doctor in the practice also did that after my first chemo treatment. He is a male so it is NOT a sex thing.) I have recommended this woman to several people when they were diagnosed. She is Indian with one of those million syllable names and she uses her first name (two syllables) professionally. This may not be the perfect fix but it needed to be done. I suspected it might be this easy but wasn't sure. I have left a message with the nurse manager person. I have also made appointments with my therapist, my urology NP, and my urologist. I'm pretty sure that my ex-MO thinks that my UTI's are psychosomatic. Fine. Maybe they are. The pain is the same. I'm going back on my cancer meds, including estrogen suppression and need to have a plan to deal with the consequences. (Not that being off for a month made any difference.)
Now the hard part. I still have to write a letter to my former doctor. I feel guilty that I didn't tell him face-to-face. He needs to know the things he does and says that are hurtful to his patients and detrimental to his relationship with them. He probably won't get past the first few sentences, if that, but he needs to know and I need to tell him. Yeah, this is for me but if I can save even one patient from one of his abusive comments in the future, it's worth it to try to get through to him. I really doubt I can do that but I can try.
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Congrats Jaycee!!! That is Awesome!!! I can't believe the things your (now former MO) has said to you!!!
He sounds like a true narcissist and I doubt anything can be said to him - to get him to change (with that type of personality disorder - it would probably take an act of God to get him to change)....
But - it sounds like you're got a plan!!! And, you sound good!!!
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Jaycee49, what you did was not cowardly at all. Make the change, your health and your peace of mind is what matters, not how he feels about it. If you need to write that letter to say your piece, then write it. It will likely change nothing but at least you know you didn't stand quietly by while being treated like crap. You stood up and were counted and put your feelings to paper. I think that is important, for your sake. I hope the new situation results in some good outcomes for you. Good for you!
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Good for you, Jaycee, getting on to an new MO. I am glad it was so easy to accomplish. When I wrote the MO I left behind, I was not holding me breath in that he would want to know what he had done and see the way to change. But I held out no real hope. The letter is more for my benefit. And if I am confronted later by him or a different MO. Memories are hard for me, I get lost. So I am always glad to have things that happen in writing too.
Wish it had been so easy to get an new MO at Goshen. But they stood by a decision that I kept being told it was not going to happen. I did not feel I had time to fight or waste, so moved on. Though I really would have liked to have stayed there. Everything under one center is a great feeling.
Diane
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Be cautious about giving that lousy onc a letter, jaycee. You don't want him to badmouth you among the other doctors and prejudice them against you. But do write it for your own healing. You can help other patients by recommending or not recommending. By the way, I felt like I had a UTI after chemo, but the test was negative. My onc and nurse explained that chemo can cause similar symptoms (real ones!) even with no infection. That lousy onc should have known that. Hopefully the urologist will know it.
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Very good advice from ShetlandPony!!!
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My RO just told me that the rads to my sacral area might cause "UTI - like" painful peeing symptoms. There are a few things out there that can mimic UTI symptoms.
L
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Good feed back Lita. Jaycee good luck with your new MO. It is definitely touchy in the same practice I know.
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Built up Steam!
I recently found this site and started exploring the topics. After reading quite a few posts and rants, I feel like this is a safe place to let some of this built up anger out. So many of the posters here have expressed the exact same feelings and experiences I have. I haven't posted anything until this or even talked to many people about my feelings other than my DH (he tries his best to listen) but a lot of pressure has been building and I just really need to vent.
I have a lot of anger since my first diagnosis 13 years ago, mostly at how rude and uncaring friends/ family have been. My children were young the first time and no one stepped up to offer any help, so it was not surprising that the second time around it was the same. I'm not one to ask either, I just try to tough it out. I am mad at myself for not asking for help. My friends/family act like they are too busy or they just ignore me and don't say anything at all. These are people I help and care about. I have loaned them money, driven them places when they couldn't drive, listened to their problems, and encouraged them when they were successful or needed support. It really feels terrible to have no one even check in! Even my BFF for the past 25 years… we Skyped right before my surgery and since then nothing… not one word in almost a year.
My mom and sisters also checked out… Mom makes it all about her! Always! One sister calls now and then- She lives a few states away. The other not a peep! Mom and silent sister are less than an hour away from me. What the F is wrong with people? Mom told me she was comforted by talking to a stranger who also had cancer about me and it really helped her… OMG really!
Also the questions from people "why did you get cancer" or "do they know what caused it" or the one's that think they know why… maybe because you are overweight or drank diet soda or blah blah blah!
Friends stopped calling, body hurts, can't sleep well, and I look like cr@p! I feel lost and have no energy.
Last year – Part 2 of this experience has been beyond challenging and I miss my old life. After the surgery and TE was placed, I ended up with an infection which required daily trips to the Infusion clinic and a PICC line… I was strapped to an infusion pump for 8 weeks. Miserable! I hate how I feel! The implant is so uncomfortable and it feels like I have hard plastic or metal around my chest. It's tight and since the surgery I have a chronic cough, they haven't found a reason for.
I lost my job (whole other rant!) Looking for a new one now, having TONS of fun (not!) explaining why I wasn't working last year.
Ugh! Just want to feel like better!
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tenacious~ you're so not alone. People can't handle it. By talking to other people about it, they think it's supportive, and caring. But it's more of an insult. Rant away here. Goodness knows I have many times. Sometimes I get lengthy but there is a lot to get pissed about! I am estranged from more than half of my shitty family by choice because they are seriously mean people! People stepped up I didn't think would and vice versa. I am sorry you're going through this! But assure you're not alone. A lot of family members are taking up residence in the river of denial. Hugs to you ~M~
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With the wind today it’s negative 24 out with hurricane force winds. Keep asking myself why we live here😖.
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In Maine Dianarose - it has to be heavenly when the weather is durable. I want to move there sometimes. Then people like you remind me of why I don't do winter very well. I feel for you and hope you can stay indoors!
WellI have a hump on the back of my hand. Went for CT. Tech could not run the IV though she did get labs for kidney function from the first stick in my hand. After second stick in the forearm blew the vein, she said she would get an ER tech. Then ER tech came in w a sidekick. She examined my left arm and hand, I told her I would bet on vein #2. She seemed like she was going to use that one but then noticed vein #1 popping up there looking all perky and ready to give blood. I told her that the CT tech already used that vein and it really hurt toward the end. She says, the hand alway hurts. WHY DO THEY HAVE TO ACT LIKE WE ARE GREEN TO ANY MEDICAL PROCEDURES I ASK YOU? She told me not to look. Now she is about 1/3 my age. I said I have been looking every month for 6 years. Oh, I say, and if I say it hurts then it really does bcz I can sit through 45 minutes of sticks and not complain. She did not look pleased but truth is truth. I showed her the little needle hole where the vein had been used. She used it anyway, got the IV running, right proud of herself. She kept saying Thank you to me, like I did something special. I had thanked her so don't know what that was. They leave. The CT tech comes in, oh no she says, she used the same vein I did, I don't like that she used the same vein. Me either I said, I told her you just used it and I proved it, still, she thought it was best. So we carried on. CT was fine. These machines keep getting faster. Then the injection for contrast went into my IV and it HURT like never before, I could handle it and didn't say anything besides what could they do, right. Breathe. On way home I unwrapped my hand as it hurt. And there was a lump. I lovely blue lump. Usually I can manage not to even bruise. I have blown veins, once a blown hand vein shot across 3 infusion chairs and I cleared the room..... I have handled multiple sticks in one day. I have never ever lumped.
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Bluebird, try periodically icing the blue lump and keeping some pressure on it, though depending on how long ago this happened, it might not do much.
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I went for a follow up with breast surgeon. The RN said that she has known many women who had bone mets and were still living over 20 years!
Just as I was totally liking the positivity of the comment..she added..."but for liver mets, not so much".
I just sat there, totally defeated and shocked. But I did manage to say..."you do realize I have liver mets, right?"
She said yes. Oh well.
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Waving hello to Dianarose!! 🤗🤗 miss you my friend! Thinking of you today! ~M~
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Thanks ChronicPain - I used a bag of frozen peas since that felt softest. grin. This morning the lump is gone, pain is gone but a monster bruise is there revealing how distressed my hand was. Never had a hand bruise like that. I held the pressure on it best I could too.
SandiBeach - you and me both. It is kind of like being in a quicksand lake and watching everything carry on as usual. But not being able to move anymore. You know though, I am STILL IN DENIAL. And that is cool with me. The only thing bringing me into the reality now is pain. So I do whatever I can to not create pain.
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SandiBeach57,
You're lucky the nurse didn't add BRAIN METS to the mix.
I've been de novo St IV for only a year and a half, starting out with bone and organ mets. I figured I'd have AT LEAST 2, possibly even 3, more relatively good years before the crappola hit the fan; then 5 mos ago, 20+ brain mets crashed my little cancer party.
I've had whole brain radiation, but they can only do that ONE time. Now the mets are growing again, along with everything else. I will start another chemo Tx soon because my cancer keeps mutating. What works for a while on the organs doesn't work for the bones, and vice versa. Xeloda can go beyond the blood/brain barrier, but that stopped working for me in summer of last year.
I wear Depends with plastic pants over them because the spinal mets have eaten away the nerves that control my bowel function. The plastic pants take care of the oozing/leakage issues. I have to walk around with a cane or a walker because the brain mets make me too dizzy and I've fallen. I can't drive anymore because brain mets have left me with a big blind spot in my vision.
If I ONLY had bone/spinal mets, I guess I could live with wearing Depends and plastic pants for another 10-20 years. Thankfully, that will not be the case for me.
I'm receiving palliative care - not hospice because I'm not quite ready to throw in the towel yet.
I have no illusions. This will no doubt be my last year.
L
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Lita, I am glad you are not ready to throw in the towel. We wake up, start the day and live the best way that we can for our various issues. What I like about this online community is our collective unconditional caring for each other.
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Me, too, Sandi. This site has been my life saver.
L
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Sandi - what that RN said sucks...why the F did she say that??!!!! What a stupid thing to say!!!
Lita - I too am glad you're not throwing in the towel...you have so much strength in your spirit and it's always good to see you on here...we love you and we're rooting for you!!!
Bluebird - I'm glad your lump is gone...
I hate this stupid disease. I hate how insensitive my DH is...but that's another whole long story...I just wish that he could be nicer to me, because he knows that I might not live nearly as long as him...nevertheless - it is what it is..
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man Lita, F*#@ this S*#@. I hate that you are going through all that. Wishing for a magic wand. Hugs for everyone.
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I don’t know where to go with this one, but I’m mad, sad, upset and depressed. My friend Amy’s husband has been fighting the good fight for 7 years. Started in prostate moved from there to his colon, moved to liver then lungs then back to liver. I think it was in the bone too. When I say fighting for 7 years I mean radiation, chemo, round after round. Surgery and treatment. The poor guy may have had 6 “worry free” months in the last 8 years. Yesterday Amy took him to the hospital. He had an infection and was in a lot of pain. This morning he breathed his last breath surrounded by his family. I don’t get it. He had never given up. He had endured so much to be able to watch his daughter grow up. She’s 8. I feel guilty for doing so well. I’m sad for my friend and her family. I’m mad because, really, what was the point in all the pain and suffering. I’m depressed because this hits closer to home than ever for me. He was my age. I have cried, yelled, hit the punching bag, run, walked, and sat down too exhausted to eat. I don’t know what to say or do but I feel the pain of loss with her. It’s going to be a long week
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TaRenee words cannot express sadness with a young child who will no longer have their father. Cancer stinks....no matter what kind it is.
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well hell... I just got the phone call to clarify some questions for short term disability. Why do I feel like I failed a test??? WTH am I gonna do if it’s denied??
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My little vent.
<<<RANT BEGIN>>>
I am so pissed off by the generalization of literature when I want to find an answer.
Mastectomy v. Lumpectomy, "Oh they are equivalent". Umm...no they aren't, if you go to PubMed and read the research. And depending on age, stage and a whole host of other factors, it can make a significant difference.
Risk of developing Lymphedema "Increases with an axilliary dissection." Yes, I know that. What I want to know is by how much per node with a decent r-squared or p-value.
Risk of contralateral recurrence and systemic recurrence without Tamoxifen and with Tamoxifen and with Tamoxifen and AI. Well, I can't find good data on the without Tamoxifen part (although I found a calculator - but without seeing the algorithm and looking at the underlying research and it's validity as well as when it was done...it's like playing bingo).
Yes, I get BC is overwhelming.
Yes, I get that most people do NOT want the statistics and the data.
But for those of us who use that to guide decisions, this effing sucks. I hate dumbed down data.
<<<RANT OVER>>>
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Hollydolly, what I find is that you can't even trust the data that is there. Because for everything you read, something else will contradict it. Trying to get to the Truth can be tricky as hell. I think those who accept research and their doctors word at face value have a much greater comfort than I do. I am a skeptic and do not easily just fall in line with what someone tells me. They have to prove it. Beyond a reasonable doubt. So far my overall opinion of all the reading I have done on various topics is : you're kidding me with this shit. I butt heads with people who grab onto an idea and say, oh yeah, this is the truth, this is the holy grail, ask no questions and you'll hear no lies. Sadly, this does not work for me. I hear your frustration.
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I know what you mean...I live in fear of the other shoe dropping. Very sick of this...I had a better attitude when I was in chemo!!
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TaRenee - Your revealing sentiments scream of a broken heart and broken trust and survivor's guilt. Been there. Our friends were going through cancer at the same time as I - she was diagnosed with ovarian cancer and I with BC. She was courageous and she did everything allopathic medicine could throw at her so she would live. I didn't. I waited, I was too afraid. Two years in she died. I couldn't even go to the funeral, I felt so guilty for still being here. It was last year before I could mail a holiday card to him. Her husband had told mine that he better get me on treatment or I was going to die, this stuff would get me. Well, I didn't, she did. We all loved her, we mourned her passing. There is no understanding to be had. But I think the survivor's guilt makes it too hard on some of us too. Hugs for you. I have no calming words for you except I sort of understand.
Swess - Hoping it wasn't a flunk, they probably are not allowed to tell you anything. I remember when you found the job opening for your specific job. Has anything else come of that issue you faced?
HollyDolly and Runor - I too spend hours digging up reports, trials, facts and experiences. I print and read and cross reference in search of answers. Usually getting no where except a little more knowledge of what others have faced on a one-on-one with treatment. Not real clear info to go on.
CT SCAN - my scans of neck, chest, abdomen/pelvis was pretty unnerving. The doctor kept listing all the lymph nodes and nodules and lesions then in impressions he would say "likely due to progressive metastatic disease." Also right middle lung lobe is completely collapsed (used to be upper for 1 yr) as is the bronchus to the middle lobe (not to be confused with main lung bronchus). What is good is there is very little increase in liver lesions. And the pain is only if I have done something to aggravate like bend over and brushed the dog. I do not know when the this and thats grew but last PET CT was Oct 2, 2017. Could have been there then and not worth reporting du to size or SUV uptake. And that is what makes me angry. All of it is worth reporting. It means something to us.
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So kind of you to remember bluebird. I never brought it up, so nothing ever came if it. Fingers crossed STD comes through though.
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