STEAM ROOM FOR ANGER

Runor - you said everything I - and all of us - feel. Thank you.

Beatmon, Bluebird, Micmel, Lita - praying for you all. I want you to have many more Christmases.

I found this site and this forum item and I am more than ready to blow off some steam. This past Thursday was the second anniversary of my cancer diagnosis. Got my diagnosis of breast cancer on December 28, 2015 with 4 tumors. Two were very aggressive, one was in situ,, and one was benign. A week later I had a double mastectomy. And I felt great and was getting stronger every day.

Life was good. And then my new onc decided that I needed chemo. One year later I am left with horrible side effects, almost no hair, no eyebrows, hair on my chin that grows faster than I can remove it, pain my joints so bad that I went from a cane to a walker, to a wheelchair,, and a handicap parking permit. Lymhodema, horrible sores on my body, brittle and breaking teeth, extra weight, and poor vision. I tested positive for Lupus. But wait, there's more.

I have had two uterine/endometrial biopsies in the last five months both not cancer but cells were growing fast. Probably due to the Tamoxifen that my onc prescribed. The body sores that started a year ago turned out to be MRSA!!!!!. My onc thought that the "rash" was just due to my medications. Now I am on a heavy duty antibiotics that make me feel like I have the flu. The "rash" is numerous open, leaking lesions which means that I have to wear clothes to cover up and contain the liquids. I now have to wear Depends. My first onc got promoted to a director of five cancer centers. WTF! If you can't do the job, you get promoted????? $hit floats to the top.

Everyone used to tell me that I was beautiful. I was 65 years old with no wrinkles and many strangers thought that I was in my late 30s. Not now. I limp and I'm usually bent over because of the pain. Can't get my teeth back to normal because the dentist doesn't want to work on them while I have MRSA. My sex life is gone. Even with all this stuff, the hardest thing I've had to deal with is watching my husband's love go away. He begged me to do the chemo treatments and he went to every single infusion with me. Doted on me and was so proud of how I had dealt with all of this. He now is frustrated because I can't keep up with the house andButguess that he thought that after my treatments finished, our lives would get back to normal. That didn't happen. I thought that maybe he is disappointed because I haven't died after my expiration date. I told him that I am only staying with him because I need the medical insurance that supplements my Medicare. So in turn he gives me a new car wrapped in a huge red bow but I couldn't even go with him to pick it up because I have had heavy abdominal bleeding and cramping since Christmas day. My Gyn can't do the hysterectomy until my MRSA is no longer active. He can't give hormones to stop the bleeding because I am ER plus and he needs to confer with my new onc who won't be back until next week. So, I'm going to be celebrating the new year wearing Depends and tampons and a wig. I told my DH to just drop me off at the ER and speed away. I'm heavily insured and they can run tests on me till they can't find anything else to test. And start me on stronger antibiotics to kill the MRSA.

It probably sounds like I'm just whining and feeling sorry for myself. I'm not. I have wanted to fight this from the minute I got my diagnosis and I still am fighting. But I've had a few doctors that seemed to stop doing anything once they stopped receiving the big bucks for the treatments. My physicians and surgeons at the Breast Center are awesome. They saved my life and then gave my life back to me. I can't say the same about what happened once I started the treatments that were supposed to help me keep that quality of life. I know that my new onc really cares and is dedicated to getting me back on my feet. But I'm now very weak and tired and can feel that this will be my last Christmas and my last New Year. I am so angry but it feels so good to get this off my chest. To be able to scream out my frustration.....

Macruising - I read your story. It compels me to say this is so very much like my SIL's story. We had bc at near the same time. She chose your path, I chose a different one. She went through pretty much everything you have listed. And SEs from radiation plus a terrible open burn. Some of us have an easier course for whatever reason. What w can give one another is empathy and a place to talk it out. Like cpeachymom said, this thread may be quiet for a few days. There are other threads where there might be parties and confetti flying.

I've been through a few oncologists that had me wailing at the wind. With all the trials and errors and wasted lifetime hours used in finding realistic medical treatment for lupus, thyroid issues and breast cancer gone to liver, I have spent several months on this thread pounding out the keys. like this......

The very first oncologist that I ran away from really got to me. He had me all lined up for the full course including a double mastectomy, radical on the right side. At the appt after my second biopsies (already had surgery) he outlined it all. I was sitting across from him in a rather sizeable exam room. Honest ---- I could see me flying across the room, heavy Birkenstock sandal first and kicking him in the face. The vision was so real I thought I had done it. Shocked, I looked at Hubby and said, we have to go. And so we did.

The last one that gave me a reaction was already director of oncology and a bc specialist. He had nothing he could do for me that I could tolerate but he was proposing it anyway. He didn't think the other tx would work much at all, but he said that was his second choice. And he told me to talk to hospice now.

Just got over all that, no time to fight it out, found the next oncologist and am quite content.

I do not know how the anger dissolved except that I kept talking. Conversations would keep me up at night, wake me in th morning, what could I have done, said, thought, chosen differently. It is just gone right now. So keep talking.

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.

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!

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.

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

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!

With the wind today it’s negative 24 out with hurricane force winds. Keep asking myself why we live here😖.

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.

Waving hello to Dianarose!! 🤗🤗 miss you my friend! Thinking of you today! ~M~

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

Me, too, Sandi. This site has been my life saver.

L

man Lita, F*#@ this S*#@. I hate that you are going through all that. Wishing for a magic wand. Hugs for everyone.

TaRenee words cannot express sadness with a young child who will no longer have their father. Cancer stinks....no matter what kind it is.