STEAM ROOM FOR ANGER

edwards750

You guys nailed it. I’m sick of the pink crap too, people calling you a fighter - as if we had a choice, call me if you need me - please how many people actually do that? One of my neighbors said I was going to bring you a dish but I know your husband is a good cook. Seriously? This is the same neighbor who was the neighborhood crier and told everyone in our cove and included former neighbors of my DX. Wasn’t her story to tell.

This is truly a disease that you can’t possibly relate to unless you have had it or have it. We are branded with the C word forever and will always be looking over our shoulder for the other shoe to drop. There is no cure. We are just managing our disease.

I know that commercial where they have a lady helping cancer patients find a wig, etc. I think it’s Walgreen’s.

My wish is that they put more emphasis and money into helping women pay the exorbitant bills that come with this DX. I know some ladies who are near bankruptcy paying for meds, etc. and what about the poor ladies who can’t afford the treatments? What happens to them?

I’m just sick of these wealthy celebrities sharing their “journeys.” They aren’t the average Joes.

Off my soapbox now.

Diane

JoAnnsLife

Wow! You all have just described me and my feelings!! I was recently diagnosed and will have my first chemo treatment May 9th. UGH! My emotions are all over the place and being a person who did not cry (or could hold it really well) i literally will cry within seconds. I am so sad/mad, feel that friends and family "do not get it" and so mad that I am so healthy right now and feel great, just so they can put poison in my body and make me feel awful!! just to have the "opportunity" to get radiation after. A whole year is being devoted to BC. :-(

How are we still at this point??? I seriously want to scream at the top of my lungs.

marijen

I bet your BS never had breast cancer..

JanetMara

I call it a battle,I resist and resist and just fighting it everyday like everybody but the body is just poisoned by CHEMO the MO decided to give me. I've also read that the CHEMO is as acidic as a CAR battery,I could just imagine how corroding it is especially our veins and organs. I hate CHEMO and RADIATION and my MO suggested me to have radiation where it damages all the more,then there will be fibrosis,broken bones. Besides CHEMO and radiation eventually will cause secondary cancer.I don't want to suffer with the side effects anymore. I chose to fight cancer with natural means,herbals,diet,vitamins,exercise and medication.And if God says it's time to come home,he will hold my hand and take me home.

JanetMara

Yndorian,

I have the same reaction to CHEMO, I had a supraclavicular node too,I took just 2 sessions of CHEMO and stopped it.My MO suggested radiation,I will meet with the radiation ONCOLOGIST 05/03/2019 but really am not thinking of taking radiation,both chemo and radiation will cause secondary cancer and I will be prone to Clavicular and rib fracture and stenosis of my artery supplying my brain due to radiation. There is a treatment/cure out there but the BIG PHARMA because of money just controls all cancer treatments.

Lita57

Never forget that chemo is a CHOICE. No one can force you to take it....not your dr, not even your family.

We do CONTROL some of the Tx's. I've postponed several of my sessions because I've either needed a break due to excessive fatigue or I had a trip planned.

One of my film professors from graduate school was Dx'd with advanced prostate cancer some years back. They offered him chemo, the whole shebang, and he turned it all down, saying he just wanted to enjoy his last weeks and go peacefully. He "could have" had several months more if he subjected his body to the chemo, but he said, "What for? No matter what we do I'm still going to die, whether it's in a matter of months or a matter of weeks."

I respect my professor's choice, but I'm still willing to take "the poison" because I'm not ready to go yet.

I just "celebrated" (yeah, as if...) my three year cancerversary. It's not getting any easier, let me tell you. I can barely walk or get in and out of the car. I'm exhausted ALL THE TIME. I have to sit at the kitchen table to prep vegetables or stir batter. I wear full thigh-high support hose because of chemo lymphedema, The weight gain caused by chemo fluid retention has been miserable. (Heck - I only eat two well-balanced meals a day - no snacks.) I have to wear long-sleeve shirts all the time because I have those hideous purple/reddish spots up and down my arms from the thrombocytopenia brought on by low platelets. I'm losing my eyesight and can't drive anymore. Because of multiple brain mets, my short-term memory is gone.

But I'm not ready to go yet.

....Ask me in a couple of months, and the answer may be different...

My death binder was set up months ago. I've written my obit, and designed the program for my memorial, picking out the music, etc. I bought my urn and made all the payments for my interment at the cemetery, so I'm not burying my head in the sand.

When the time comes, the choice is MINE. I will choose VSED (Voluntarily Stopping Eating & Drinking), and let MY BODY decide when it's time to let go. I will do nothing to prolong the agony/misery.

I pray for a quick and pain-managed transition home.

L

Meow13

Hi Lita, it feels good to take control of the things you can. I am thinking of the green composting option. I really feel no one should critisize the treatment options people choose. My neighbor is of the belief you should do everything your doctor says, well I don't share that belief. My feeling, they are advisors to take into consideration.

So many of us live with the fear of cancer coming back stage 4. I always think of the time I asked my husband's Aunt, she was approaching her 100th birthday, if she was afraid of her breast cancer coming back. She laughed and said that is the last thing I worry about. Oh would I love to say that!

Mavericksmom

Not sure what I am about to write even belongs here, but not sure where to ask.

Are all hospital records a mess, or just the hospital I am being treated at?  I gave initial information on my first visit, but the doctors also imported information from other doctors, hospitals, etc. Much of the information, mostly medications and test dates, is wrong.  Each visit they ask what medications I am on, if there any changes and each time I watch the nurse enter info into the computer. Yesterday I saw the PA from plastic surgery. I gave the nurse a paper with all the medicine I take circled in green, those I no longer take circled in orange.  At the end of the appointment I got a long print out, four pages of which were medications supposedly updated yet totally wrong!  Not one medication was taken off the list.  I can understand if they don't want to totally remove the medication, as it might help in the future if they see I had been on a certain medication before, but shouldn't there be some indication as to which medications are being taken at this time and which are not?  This happened too many times for it to be the mistake of the nurses.  I think the system is a mess! Does anyone read those lists? If it is only that way on my copy I don't care, although it is a waste of paper, but how do I know what is showing up when the doctors look at it?

I won't make changes anymore. What is the point? They even have a booster tetanus vaccine listed as a medication after I told them it isn't a medication numerous times! 

I'm not angry, only greatly frustrated!

Anyone else have this problem?

mara51506

Yndarian, when treatment eventually falls and I progress, I will no longer take chemo myself. I live on my own and really have no reason to keep extending my own life to get weaker and weaker. I would look into hospice at that point.

Carpediem56

@edwards750.....no it was not her story to tell!! Sorry that happened to you.

JanetMara

I agree though Ms Lita,you're so tough and so smart. praying for your daily relief from pain and lymphedema.

It's such a dreadful disease that we are experiencing,horrible life it creates into our bodies. I am just very angry everyday.

AliceBastable

Mavericksmom, one of the nurses (I forget which doctor's office) explained that meds we've stopped are kept in the current list for about four months. I THINK it has to do with the possibility of trace interactions.

edwards750

Thanks carpediem - I was so ticked at her. Her personal life is an open book because she literally tells everything. People can rarely get a word in edgewise. She and her husband moved to a farm in Arkansas in the middle of nowhere so she’s chatting over the fence with the many animals, etc like Dr. Dolittle. Anyone or anything who will listen.

Diane

jaycee49

Mavsmom, I use 3-4 different portals and all have outdated and wrong information posted. You can go in and add/fix/post all the info you want but I think it is THEIR job, not mine. And there is never any current or valuable information posted by them anyway. The medical portals have limited value. Medical practices do not hire extra personnel to handle electronic communications with patients. They just add that task to the already overworked people they have. Worthless. Lab results seem to be the only meaningful item I look for/at. That inaccuracy usually also applies to the records they have in their possession since they get those from the computer system. Circular inaccuracy.

Shelley73

the affordable care act insurance is a joke! I found a lump in my breast last May 2018, I did not have insurance and read so many things about how free mammograms were not covered if it was diagnostic mammogram, so I waited until November to enroll in this affordable health care. It was effective in January and I can find very few doctors or hospitals that accept this insurance. It is Blue Cross Blue Shield soI thought I had picked a reputable company, WRONG, I was diagnosed march the11th and still have not had surgery because of insurance! I cannot get on womens health Medicaid’s because I am insured lmao. I am so frustrated with this I could scream! Now the surgeon I have found takes my insurance but the hospital he works out of doesn’t so more delay

bcincolorado

Is there a social worker you can contact at the hospital or with the breast surgeon to get assistance in care? That is really awful!! You should be able to get someone to help you get the surgery you need without going bankrupt or letting cancer progress in the meantime.

bcincolorado

Sorry forgot to say if you have not read through the main pages here on the financial info here there is a lot of info there.

https://www.breastcancer.org/tips/paying

jaycee49

Above link in clickable form:

https://www.breastcancer.org/tips/paying

sherry35

Today I am angry! I'm pissed off at what cancer is taking and will take from me. I'm angry that there are people in my life that have health issues that could be reversed or cured by lifestyle changes such as diet and yet they consistently fall off the wagon and don't seem to care! What I wouldn't give to be able to reverse this! I don't get a freaking do over! I'm angry that my friends are carrying on with their lives and doing all the stuff I wanted to do too! I'm angry that I won't get to grow old with the love of my life, but mostly I'm angry that people take such simple things for granted. I am not angry all the time but today I am! Thank you for letting me say these things out loud! Rant over

Micmel

every single word is true..... I feel the same way !

Yndorian

I'm very hungry since my dx, not for me. Is for my parents, they are old and sick, my mother has Alz and my father drinks, both of them need a daughter to care of them, a healthier daugther, not a daughter who can't even clean they house or cooking or made an effort to dress them because the risk of lymphedema. They not need a daughter in constanting risk of recurrence, depressed about her future. Sorry about my english, today I didn't check my text with a translate, all came out like a vomit.

Yndorian

I'm very angry since my dx, not for me. Is for my parents, they are old and sick, my mother has Alz and my father drinks, both of them need a daughter to care of them, a healthier daugther, not a daughter who can't even clean they house or cooking or made an effort to dress them because the risk of lymphedema. They not need a daughter in constanting risk of recurrence, depressed about her future. Sorry about my english, today I didn't check my text with a translate, all came out like a vomit.

jaycee49

Yndorian, your English is fine. Do you read Facebook? Hard to tell if some of my friends got through 3rd grade.

I'm sure your parents realize how much you care for them and would like to be doing more physically but are unable. You and your parents are very lucky to have your brother. In this country, that kind of family responsibility does not necessarily exist and you all could end up floundering alone.

Are you still having chemo? Even if you are not, it still can take up to a year to recover from the very hard chemo you endured. You will start to fell better gradually over the next few months. Please give yourself time and be kind to yourself.

Yndorian

jaycee, someway I think is unfair to crying here and being consolate for stage IV women when I'm not. I'm done with chemo but surgery and rads are the next so I will be out of scene for a while. I'm terribly worried about the future. I have a supraclavicular node so my stage is still undefined. I don't afraid about death, I'm afraid to be uncapable to care my parents and to be another charge for mi brother.

Anyway my last taxol was last monday so should be the toxins still traveling in my blood who are speaking for me now. Kisses

mara51506

yndarian, a lot of us stage 4 people started out thinking we would be cured. We understand the anxiety of recurrence and recovery. We all love to support all stages of cancer here, the fear is the same. This board is for all stages. It is for people to vent off their stress. No one is a whiner. No judgment here.

jaycee49

Yndorian, for me, surgery and radiation were way easier than chemo. You still have a ways to go to recover from chemo but the other two shouldn't knock you down quite as much. Congratulations on getting through chemo. That is a huge accomplishment.

Mavericksmom

JoaniePA, I just went back and read your post about the commercials and things you hate! I thought it was just me! I really loath the Walgreens “ fight beautifully" commercial too! I really hate October!

Jaycee, wow, you never cease to amaze me, always reaching out to everyone and offering support, all while you’re confronting issues of your own! Your kindness is appreciated by so many!

Surgery, chemo, radiation, I once heard these called mutilated, poisoned and burned. Far mor accurate but not politically correct. It is definitely how I think of it!

I try to stay positive because attitude is a choice, but I won't apologize when reality robs me of my Pollyanna wannabe moments. Cancer sucks, and it forever changes our lives.

I was told in 2003 that my cancer was “tiny." After five years I was told I was “cured, but they just aren't allowed to say that." Guess what, 15 1/2 years later and it came back! I will always know it will come back again, the only question is when and where.

Meow13

I too was horrified at what my "treatment" options were. It was small, caught early, I thought. Just to learn later this beast is dangerous at any stage, any size.

When I see my plastic surgery reconstruction and compare it to cancer treatment I feel like I was comparing the present day with the stone age.

Lita57

I hate "Pinktober..." everything about it, as well as (already posted on past threads) those spokesperson commercials about J & J talc powder causing ovarian cancer, and the millions of $ already paid out to "victims."

GIVE ME AN EFFING BREAK! We're victims too. Who do WE GET TO SUE, for criminy sakes!? We're in pain...we're suffering AND DYING. Why can't we "cash in," so at least our families would get a little dough out of it after we transition

One out of 8 women will get BC, but only 1 out of 58 will get ovarian C.

So, what's the matter here? I've already called a few of these "ambulance chasing" firms and given them more than a piece of my mind...have they tested these women for genetic mutations (BRCA, etc.) that may have already predisposed them to cancer, regardless of talc use?

What about biopsies on the actual ovaries? Can they PROVE that they're riddled with "alleged" cancer- causing talc?

And what about the women who NEVER used talc and still got OC? Kind of like the people who get lung cancer, but never smoked a day in their lives.

I'm over sixty...Mom used J & J powder on all five of us since birth, and I still use the powder myself.

It's a pile of bullshiza if you ask me.

L

Meow13

yep