STEAM ROOM FOR ANGER

Meow13

i get pissed when they claim maintaning a healthy life sytle will keep cancer away. Well it didnt help me.

Charlene1

So glad I found this forum because I need a good rant and no one else unlesss in this crappy situation themselves could ever possibly understand.

So here is my story, last summer I was feeling really tired and suffering from terrible earaches I did not have a family doctor so off to the emergency room I went a total of 6 times to be told it is allergies, it is TMJ and I can't remember what else, each visit I was given a prescription for some antibiotic or pain med by October I had a drawer full of prescriptions and nothing worked and it was getting worse I could keep no food down and was losing weight. On my last trip to the emergency room my DH stated to the doctor that we were not leaving until we found out what was going on, the doctor was great she said well first off we are going to order a CAT scan and go from there, within minutes they were doing the CAT scan, she came back and told me there was a large mass in my throat and in all probability it was cancer and made an appointment with the ENT doctor for the next morning. A biopsy was done and sure enough came back positive for Squamous Cell Carcinoma. Treatment plan was 3 rounds of Chemo and 35 radiation treatments. MO told me it was quite a large mass and was un operatable because of where it was located and instead of growing outward it had grown inward and was up against my spine, he also went on to say we only had 1 chance to get it and he gave it 40% chance.

I was so sick and unable to eat that they put in a g-tube and they hospitalzed me for 2 months as my wieght loss was so extreme ( went down to 80 lbs). A week before I was hospitlized I had to put my best friend of 16 years down ( my little black pug Winston) and I still miss him . Last treament was end of January and I finally got to go home still tube feeding but at least I was home.

By May I was starting to feel like myself again and looking forward to going back to work and life returning to normal. I stopped the tube feeding as I was finally able to eat again and had gained weight I was up to 104 lbs ( my normal weight is about 116-120 lbs) I had a PET scan late May and it revealed the throat cancer was gone!!!! but also revealed a tiny pinprick in my left breast he said it is probably nothing but lets get a mammogram just to be sure there was no lump so I went off had the mammogram and ultra sound and a core biopsy, they had a hard time doing the biopsy as it was so small it kept disappearing but finally they got it. They made an appointment that day with a breast surgeon for 2 weeks later, it was on my mind but I was so sure it was nothing and they assured me that the appointment with the surgeon was protocal and the nurses all told me if they find anything they will call before the appointment. I never got a call so off I went to the appointment 99% sure it was nothing, I was wrong dx as IDC 7.6 mm ER & PR positive HER negative as it sits right now treatment plan is lumpectomy and 16 rad treatments. and hormone therapy.

I have spent the last month or so in disbelief how the heck could this happen I just beat this bastard cancer in my throat only to find a different one in my breast. I just went back to work in July and now this, before the throat cancer I was never sick I rarely got colds or flu and never any major illnesses until I hit 60 last year. My employer has been great I took 10 1/2 months off with the throat cancer and had only been working for this company for 9 months, they told me my job would be there when I returned and now I have to tell them about this new cancer. I love this job and don't want to lose it to cancer, my docs say I should be able to work through radiation but I really won't know until I try.

So here I sit hooked up once again to a feeding tube as I am still not able to eat enough to gain or maintain weight I went down to 94 lbs. But with the tube I am now up to 100 lbs. I feel good physically but mentally I am a basket case. I am a sales rep and only work 3 days a week which is good but we are doing our annual Breast Cancer Awareness month promo's and it just seems so strange to be out there selling and promoting this when none of my clients know my situation and yesterday a package arrives full of Fking pink ribbons for me to pass out!!!! I want to throw them in the garbage.

I have yet to cry over this damn cancer and know I have to get it out and I am sure the tears will come but right now I am still so angry that it has not happened yet. I feel guilty about my pity party when there are so many women in much worse situations than mine.

I worry myself sick over this upcoming surgery this Thursday more about the results than the actual surgery. I am so scared it will come back with more than what we expected that it is in the lymph nodes and will be bigger and more widespread than they thought.

I do have a great DH but he is just as scared as I am so I only access this boards when he is not around as he has a heart condition and the stress of my cancers is taking its toll on him as well. The financial situation is also a killer, the tube feeding equipment and formula runs about $1,200 a month and is not covered by anyone as it is non-prescription, this last bout of cancer depleted our savings and mine is the only income because of his medical problems. We are fortunate that we have no mortgage so our expenses are low. Some family and friends had a benefit auction for me last week and raised over $8,00.00 which will cover the costs for this cancer and I at least do not have to worry about finances on top of everything else.

I am so sick of riding this cancer train and want off. I am so sick of well meaning people saying God does not give you more than you can handle or you are a strong woman you will get through this. Yes I am strong but how much can you throw at me before I just fall apart I feel I am on the brink of that right now. I want to yell, scream and beat my fists.

I know I will deal with whatever the outcome of the surgery is but with every little ache and pain I immediately think it has spread to my bones etc. I went to my family doc asking for some anti aniexity drugs and she must have misunderstood because when I got them home they are sleeping pills. I have no problem sleeping it is the waking hours that are driving me nuts. I find myself snapping at people over the stupidest little things which is not my nature I am usually laid back and take things as they come but right now I feel like I am losing my grip. I am so pissed that I will spend the rest of my life being monitored for this ugly disease.

I know this is a very long post and after writing this I do feel better

Thank you ladies I wish everyone here the best.

april485

Charlene, all I can do is validate your feelings (they are absolutely appropriate and normal in your situation) and offer you a cyber hug. Sometimes, just getting it out can help a little bit. As for what you need, call that doctor and explain that you need anti anxiety meds NOT sleeping pills and hopefully they can remedy that quickly enough. Being in a highly agitated state is not good for your recovery and as such, you most definitely will benefit from some help. Huge hugs and prayers your way that this newest cancer is a blip on the radar and that after treatment you can put it in the rear view mirror. It is always there...there is always the outside chance it could rear its ugly head again of course but hopefully it was caught early enough that you can concentrate on getting and staying well!

(((((Charlene))))

sas-schatzi

Charlene, sorry for all the chit(shit). What drug? Important, you may not have a complete understanding of the drug. Say if it's Ativan/lorazepam. It'll work for both. I'll look for your response. Many of the benzo's work for sleep as well as other things. They each have a niche in the drug class.

Lita57

Hi Charlene, I feel you.

And don't you just hate it when well-meaning friends say, "Well, maybe you should go see a therapist." What the eff is a therapist gonna do? Wave her magic wand and make the cancer disappear? I would only see one if THEY were a cancer survivor themselves, or else they wouldn't be able to relate to what I was going thru. "Oh, just practice some guided imagery…take a few deep breaths with your diaphragm…try some different yoga asanas." Bullshit!!! **

You have every right to be pissed as hell and scared to death to boot. You wouldn't be human if you weren't. You've won the cancer lottery, not once but twice! No one needs to tell you that people actually die from this. At our age, we know lots of people (friends, family, co-workers) who have already passed from cancer, and we could be next.

Of course, I try not to dwell on that – I could just as easily get hit by a drunk driver tomorrow. But I still think about it every day, especially after the last scan showed it's now in my liver and I have even more compression fractures in the lumbar area because of Mr. Cancer's new lytic lesions in my spine.

The tears will come when they're ready to come. I couldn't journal about Mr. C for weeks. It felt totally surreal, and I thought if I actually wrote the words down, then it wouldn't be some nebulous bad dream any more, it would be a reality...no going back to a fantasy land where it didn't exist.

We are here for you anytime you want to vent, scream, moan, howl, whatever.

Sending prayers and hugs your way.

** Please note, I'm not trying to "dis" anybody who does see a therapist or does yoga, but it doesn't always help everyone. Sadly, I used to love yoga, but I literally can't get down on the floor or bend over anymore because I have half a dozen compression fractures in my spine. Happy days.

Rory

I'm pissed that when I was diagnosed last September I assumed I'd be done by now.

I'm not.

My irradiated tit has the kind of oozy, pus-dripping infection that is usually featured in horror movies, and I still have a fever. I feel like hot dog shit.

I'm pissed that every well-meaning person that offers help (not that there are many) fails to offer the one thing I desperately need: Watch my autistic son.

I'm pissed that people give our family that look: "That poor, poor family. Husband is a cop, wife has cancer, only child has autism." Some people just say it aloud, adding, "What else could go wrong?"

By all means, let's tempt the fates with such questions!

I'm pissed that I can't sleep at night, and then I'm super pissy because I haven't been sleeping.

I'd like to say I'm pissed about Pinktober, but I really love Halloween. I barely saw the pink last year and I'll barely see it this year. True, I think all that pink crap is stupid, and I certainly wouldn't wear any of it, but having been the parent of an autistic kid all these years what does turning your porch light blue, or wearing a blue shirt in April really do? I'm kind of used to the public getting all excited once a year(but not really understanding) something that totally dominates my life.

Jumpship

Tonight I found another "pea" on my left forearm. The first time this happened the PCP felt around and since she could move it around decided it was okay. I wanted to trust her but also was not excited to go through another scan. So now that I have found another one...I'm not buying that it's a third lipoma. I hate being nervous about a recurrence. I want to put this behind me!

Lita57

Hugs to you (((Rory))), and hang in there, Jumpship.

It also bothers me when people call it "your cancer journey," like it's some happy little trip off to Disneyland that you didn't make a reservation for.

Why do people have to sanitize it? Let's call it what it really is: Your cancer nightmare...your cancer living hell...your cancer decent into madness...

I am sure you can all come up with your own descriptive nouns and expressions. Anything but journey. The only way my Stage IV journey's going to end is in death.

Meow13

My breast surgeon would say it is like climbing a mountain. Ugh i dont want to think about climbing a mountain. I want it over already and get back to life. Why worry about what could happen.

Meow13

The thought of climbing a mountain when do you get to the top, never. I want out of this twight zone.

marijen

Meow13, when you find the door out let me know. I'm with you.

Lita 57, yes I would call it decent into madness. I had a doc call it journey and I knew there was something wrong with that. What a jerk, a real patronizer.

Charlene1

April 485 Thank you for your reply and hugs I have a call into my Dr for some better meds I am still highly agitated but hope she gets back to me with some better meds

Sas-Schatzi thanks for your reply. The instructions with these meds states they are a hypnotic and not to use unless you can get 8 hours of sleep. I do have Ativan but they also make me sleepy. Have a call into the doctor hopefully to get something

Lita57 thanks for your reply I agree about deep breathing exercises etc I am glad they work for some but not for me Thanks for the hugs and prayers

Rory I hate Pinktober as well

I feel like cancer has taken over my life this past year and I know everyone one here can relate I obsess about it 24/7

I took that bag of pink ribbons and tossed them in the garbage and it felt great

Hugs Prayers and best wishes to all

sas-schatzi

Charlene, Please, tell me the name of the drug she prescribed. There are dozens of hypnotics. I know a bit about drugs.

fredntan

Hi Sas-I'm still alive!!! Scans today Hoping I am still NED. Became metster 3 yrs ago.

This rant is for part of my family.

My sister-older. quit her job as nurse when I first got cancer "to help me" never got a casserole

I have been working on selling something that my parents left to my sister and me. She hung up on me twice. The last real conversation that we had she said "can't you wait three years" in whiney voice and hangs up. there tax loss would be less in three years. I know better than to try and call the idiot bitch back. she screens her calls. she has hung up on me before. I may not have 3 years! she either doesn't care or doesn't understand what metastatic BC means? I am a nurse too. I have cried many tears since I can't go back to nursing.

Then there is Aunt Shirley-she is my moms older sister-she is in hospice -her sons all hate her. my mom goes up and visits her every sunday. she told my mom Fran is just using this BC thing-I know what BC is. She had lumpectomy. Oh Really Aunt Shirley you have had years of chemo.had so many scans that your scanaxiety starts week before

and of course I call my mom the next day to complain about my idiot sister. she just says "I wish you'll could get along" doesn't call my sister and ask wtf did you just say to frances? says nothing. I wait months. No apology

And then lately I have been hearing snide remarks fom other people in outer family. Do they not know what we have been through?

I moved when we found my mets. Left 2 girls at home 21 and 17-17 has type 1. I dont know how she survived or how she got supplies

left my husband in Va -he can move here in jan. Do they know what its like for a young adult to know they have horrible disease and there mom is terminal and she is gone??? girls are with me now and are okay. but you know its been a bitch

sas-schatzi

FRAN Bless you, HUGE HUGS...............There is our world and then the outside world and they don't mix. They only mix in this world. I'll share something that happened while you were gone that will make it crystal clear. A newbie posted a couple years(maybe less) ago now on the Angels thread without having any clue what the Angels thread was and how sacred it was --posts "Don't you think you are spending way to much time on this and shouldn't you just move on". (close paraphrase)

Several, me included, came down on her like a ton of bricks.

That's so similar to life outside here. So, until a recent several month foray into the unnamed social network, I have chosen to stay in BCO. It's sane within the insanity.

My tale of woe with my TWIN is we are getting close to not talking for 3 years. We both have had BC, her in 1996 and me in 2009. But BC wasn't the problem. We are polar opposites and I was just tired of the chit. It's hard for the family to understand and in most cases, I refuse to explain the lifelong abuses by her. I always ask for updates on how's she doing, and enjoy hearing she is doing well. But contact is precluded.

DS's wedding is next Feb, my guess is she won't come. But if she does, I will invite her to stay. But that will not cause a resumption in contact. She's too mercurial.

Fran sending a PM

Lita57

Fran - There are crappy people in every family. I gotta 'em in mine, too. Some people think the world just revolves around them. When you get sick, they just think, well, too bad for you. It sucks when you pretty much have to go it alone. Sending you prayers.

Charlene - GOOD FOR YOU throwing those damn ribbons out. There was a "Relay For Life" at my daughter's old high school, on Saturday and I didn't feel like going. I'm just not ready for any of that yet. I don't feel like a so-called "survivor". Don't get me wrong, I'm happy and thrilled for everyone's successes. But I was just diagnosed w/St IV in April of this year, with mets to spine, ribs, pelvic and hip bones, adrenals, bladder, kidney, and liver. They call these relays "Celebrations of Life," but this ain't much of a life for me.

I know survival rates for JUST bone mets are very encouraging, but when it spreads to a bunch of internal organs, too (along with all the bones), survival rates can change.

Love you guys...you're keeping me going.

Charlene1

SAS the drug is Silenor not sure about my spelling I forgot to check it before I left this morning. Feeling much calmer today had a long chat with my nurse navigator surgery is on Thursday and will be glad to get that part over with. Thanks for your help

pupmom

Arista, people post the same kind of things here. And I'm talking about people with bc, sometimes advanced. And, yes, it is unbelievable.

tangandchris

Arista....that crap really pisses me off. The bald head cap is ridiculous, seriously...if someone offered to wear that "for me" I'd ask them not to.

IDK, I'm in a weird place today. Somewhere between angry and ready for change. I decided to take a break from femara, just a few days to see if that helped my ever increasing pains. I was barely able to walk in the mornings and the pain was just becoming awful, so I haven't taken for a few days and I'm feeling better. Then I start doing some reading and came across a blog about BC and the writer had stopped her femara for an extended period and she ended up with mets. *sigh*

Fear!!!! Anger!!! There is no winning it seems sometimes

But then I thought, I'm gonna go for a short walk this morning and see if all this talk of exercising will help is actually true. I'm tired of feeling tired, ya know? I'm 41 and I feel so much older, somethings gotta give here.

I'm rambling, just need to get it out. thx

leftduetostupidmods

Exercise helps. The hardest part is to get yourself up and doing it.

tangandchris

Well, I did it....took a 15minute break and walked around the block. I'm not gonna lie, it was fairly brutal...how pathetic is that? But I'm not feeling as achey as I'm sitting here working, so who know. Thanks Seachain

Rory

Diagnosed with MSSA (not MRSA). Waiting for final results of culture. I've had nothing but trouble since the last day of radiation. My burns basically exploded, and RO didn't exactly take it as seriously as he should. Until I spiked a 103.7 fever, that is. Then things got rolling. Meanwhile...oh, meanwhile...

My husky Ryder is sick. He's thrown up nine times today (seven in the last hour+). He'd be at the doggie ER if I weren't here alone, with my autistic son. So I have to wait until tomorrow to get everybody's best buddy and my loyal companion checked out. I feel like I'm failing him, paying back his months and months of devotion with...nothing.

I must have been spectacularly awful in another life. I need to research dictators, see if I any of them had my eyes.

Sigh. That's my wild boy last Christmas.

JJOntario

I never thought I would still be on these boards...not because they aren't great but because I was supposed to be "done" with BC by now and I honestly believed it!!

I'm having yet another biopsy next week. I grow cysts...lovely ones that are never simple. When I do grow a simple cysts they grow so big they need a great big sucky needle to drain them. I have a nice little golf ball sore lump in my hysterectomy incision that needs to get checked but I feel guilty booking another doctor appointment and missing more time off work as I just went back. Speaking of hysterectomies...I had no clue that they were so common after BC.

I'm tired of everyone thinking I should be done all this crap...I'm tired of my DH's long face at every appt...I'm tired of my mother in law saying I should have just cut them off, I'm tired but at the same time glad that the staff at the hospital know me. I'm angry for feeling guilty about stuff I can't control. I use to love my job...but with all this craziness I don't care about it anymore. I'm so done with holding my breath and waiting for test results. But I put on my make up and smile...and when I pass you and you ask "How are you today?"... I say "I'm great!

Wildflower2015

Rory, what a handsome boy Ryder is! 💗

Have you called the after hours vet to see if they have any suggestions to make Ryder as comfortable as possible till you can bring him in? That's an awful lot of vomiting in that short a time. I don't want to frighten you but with all that vomiting, he can get severely dehydrated very quickly and things can go downhill really quickly from there. If he doesn't stop vomiting or becomes lethargic, you probably need to grab your son and just head for the vet - not waiting till morning.

Good luck! So sorry you have to deal with so many things at once :-(

Let us know what's going on with your doggie!

Lita57

Rory, I echo and agree w/what Wildflower said. That's a LOT of vomiting. Please call an after hours vet. If he's not holding down water, it can get critical real fast.

Sending prayers for ALL of you.

Bonniebleu

Ya know when I was young I pictured myself as having it "all together" at my age (47). Never thought that I would be dealing with the crap I'm dealing with today.

This may be the big wake up call I needed because I am so angry, hurt and pissed off at those who I thought were my friends. I have bent over backwards for any friend who was in need, dropping everything to rush to their side, cooking meals, cleaning, donating, giving money, lending an ear, listening for hours to their problems, (that one is still going on sometimes and I'm putting a stop to it).

I'm even seeing my husband in a new light...the constant guilting, manipulation, "you're a burden" attitude, telling me how I should feel, think. He constantly puts the screws to me about money, so I'm so stressed I can't eat or sleep. It's all about my medical bills. Now I find out he sneaks and buys nonsense stuff behind my back. But I have to ask to buy some groceries???

I an't wait til this next surgery is done so I can find a job! I hate being stuck in this limbo.

sas-schatzi

Sorry, haven't read, on a fly by mission. I'm reposting this for your review of the study John posted.

A few seconds ago sas-schatzi wrote:

Folks I think John's link should be posted around in the threads you frequent.

1.Reason is most here have sleep problems.

2. It is a naturally occurring in the body

3. we need to use any thing that gives us an edge.

My personal experience with it is I used it for several years after BC @ the 10mg level along with Ativan. I had horrible insomnia. My ER+ path report said unfavorable outcome in two places. Always wondered why I haven't met'sd yet. Now 7 1/2 years.

I keep wondering if there was "something" I was doing that was helping?

Recent research is keying in on other things other than standard chemo drugs we need to keep these on our radar and make the decision whether they are reasonable to add to our regimen.

We all know it's still a crapshoot. I find that word the most disgusting word in the dictionary. So, this is an emphatic statement.

John reposting on my usual threads. Thanks for all the research you do.

18 hours ago JohnSmith wrote:

New article: Pre-clinical models reveal that Melatonin reduced proliferation of breast cancer stem cells in ER+ tumors.
https://blog.cirm.ca.gov/2016/08/24/sleep-inducing-hormone-puts-breast-cancer-cells-to-rest

TAGS: CSCs, transcription factor OCT4, encoded by the POU5F1 gene, mammospheres, Bisphenol A (BPA), MCF-7 cells

akshelley

I don't post here often, but it's not because I'm not angry and often want to vent. It's mostly because I'm afraid to see the amount of anger that come out in my posts. Like "do I sound this way in real life, or just on these boards because I know you all are a safe audience and won't criticize me." ??!?!

I'm on year three of Stage IV, constant treatment. Tired of CMF treatment and tired that I'm so freakin' unreliable when it comes to making plans with other people. I've become "reliably unreliable". Hardly can count on me for a simple lunch. And, I'm going to start having to D/O & P/U my step-daughter in January every other week, for school, when my husband goes to college.

Several other posters have mentioned they were nurses and missed their careers. Me too. I was a 7 year RN, pursuing extra qualifications in Adult Critical Care, when I was diagnosed. At first, at age 40, everyone was there for me. Now, seems like the interest or concern is gone and it's up to just my husband and a close friend to help get me to appointments. I can't drive anymore. Mostly I'm just disappointed by my family, my sister, in particular. They don't understand that I'm lonely at home, low WBC keep me from going out much, and their petty squabbles I'm not interested in taking sides in. I'm annoys that my life has become one doctor treatment after another. Is it okay to scream at someone "Jesus! You're as toxic as cancer?!?!"

I know none of my problems are any different than any of yours, but thank you for letting me vent. Please continue to vent to us too. Looks like we're all in this together.

april485

(((((((akshelley)))) You have a right to be angry! No one deserves this disgusting disease. No. One. Especially not a young woman like you are and particularly not Stage IV.

You vent as much as you need to. We are here to listen.

Lita57

Yes, akshelley, vent away.

I have extensive bone mets in spine (with FIVE compression fractures), mets in hips, pelvis, ribs, mets in liver, pancreas, bladder, adrenals, kidneys. And I was just Dx'd four mos ago! I KNOW it's gonna get worse. I'm in pain, but I'm managing it w/cannabis. I get what you said about not being able to make plans or be "reliable" as I don't know from day to day how I'm gonna feel - or how Mr. Colon is going to feel. I have two new spouses: Mr. S.IV Cancer and Mr. Toilet Bowl. It's an arranged polygamous marriage I didn't sign up for.

You have friends here even when you're lonely.