STEAM ROOM FOR ANGER

MuddlingThrough

runor, you said what I've been thinking about. Six months ago at dx, I was so ill I was mostly "out of it". Now I am feeling human again but not nearly "normal" and I want to continue and maybe improve. I'm torn between two philosophies:

1. I should lose weight, exercise more, no carbs, no alcohol, hurry and buy all the "right" supplements, atone for every physical sin in nearly sixty years of life to propitiate the god of cancer....even though cancer is going to kill me, and

2. Cancer is going to kill me, statistically in a short span of time , and is already hurting me so much, so I should eat what I want now that I can taste again for how long is that going to last, drink what I want, read ALL the books, etc.

I am trying to stop gaining because it's hard on me to carry it around and I can't afford new clothes but I'm pissed about eating rabbit food, exercising more than in a year and still gaining. Why bother?, I think then I recall that the I and L are keeping me alive. Seriously of two minds.

If we could bribe the god of cancer, let's lobby for The Cure.

mustlovepoodles

runor and Lula, y'all are hilarious. I have been on the receiving end of much cancer advice myself. I stay out of the sun, don't smoke or gamble, rarely drink alcohol. My only vice is Diet Coke and donuts. I'm overweight (duh: see donuts). I live a pretty upright life. So, i want to tell all the smarties out there, don't come after me with your calorie-laden smoothies. Don't try to get me to drink your vile Green Drink. I don't need your meditation or yoga poses.

I know what caused my cancer. It wasn't anything i had control over. I have two gene mutations which cause breast and many other cancers. Gene mutations which probably killed several of my extended family. So, pardon me if I choose to live my life to the fullest while i still have life in me. Do i look like i care if my hamburger gives me cancer? I'm almost 62, amd if i live to be 72 i will be happy. I dont really want to live into my 80s or 90s--i saw what kind of life my mother and MIL had, living in a nursing home, wearing diapers, etc. No thanks. Let me have my donuts, sleep late, and watch mindless reality TV. I'm not hurting anyone but myself, and i don't think I'm hurting myself all that much.

pajim

The god of cancer came and smote me the second time whilst I was ON the treadmill. Oh, I'd lost 25 pounds, was in the best shape of my life, oh well.

I'm a believer in all things in moderation, but that includes the four basic food groups: sugar, caffeine, alcohol and chocolate.

I'm happy for you ladies who have found purpose in life by eliminating those food groups and a few more and who have found the correct supplement to detox the liver. I really am. But that's not me. To each their own.

smwusaf

I feel better when I eat better, exercise and fit in my clothes (I seriously hate clothes shopping). But...... don't tell me to cut out wine, ain't going to happen. I do what I can to be healthy, it makes my spouse and kids feel better but a life without wine is not life.

pajim

As I was told in Rome. . . "no wine, no party".

Lita57

B4 my Stage IV de novo Dx, I hardly ever ate bacon or sausage - maybe once a year?. Now, I eat it whenever I feel like it. What's the worse thing that could happen now? The nitrates/nitrites give me cancer? Hah!

I don't drink diet soda b'cuz I really don't care for the after taste, and if I do have a soda anymore, it's the REAL thing. I try to get the Mexican stuff b'cuz they actually use real sugar and not all that corn syrup, and you can get Mexican Coke out here in California, thank God.

I'm havin' pork spare ribs tonight, slow cooked with a tasty spice dry rub - you wouldn't believe how my kitchen smells .

Going to a party for the 4th, and I'm bringing a healthy Quinoa/Israeli Cous Cous salad - because everybody attending the party needs something healthy besides all that BBQ'd meat - AND a homemade cheesecake. (I'll be eating most of the cheesecake...)

L

runor

Mexican Coke? That's a thing?

mostlymom

Worsening fatigue has been a constant problem since my initial 2011 diagnosis. The less I do, the less I do.... I nap between my naps then I wake often during the night. My family says I can't die before them. I use a walker at home, I have a wheelchair I use for my various doctor appts (I say "I use", but it's DD or DH who actually push me around), I have a scooter for outings - I can't even remember when I used it last - it sits behind the couch gathering dust. I feel so sorry for myself it's sickening. I don't have pain, thank goodness, been there, done that, but I've been pain-free for quite awhile. This doesn't count for the last 4 months of 2017 when I was in and out of the hospital 3 times (I think). Kidney stones, blood clots to the lungs, blood clots in my bladder caused by too much blood-thinner (I was over 10 when they were aiming for between 2 and 3). I got out Christmas afternoon after scaring DH, DD, and DS (visiting for the holidays). Now I get out every two weeks or so for various doctors, I have frequent UTIs and it seems like I'm on antibiotics constantly. I have been losing weight - I'm down about 75 lbs in the last 7 years. I wish I could instill humor into my post like you guys do - but....

exbrnxgrl

Yes! There is such a thing as Mexican Coca Cola. It is made with pure cane sugar as a sweetener, no high fructose corn syrup. Coca Cola states that the sweetener is the only variation in the drink regardless of where it’s sold

Lula73

yep! Mexican coke. Way cheaper than buying the coke sweetened with cane sugar they're marketing in the US now. You can find Mexican coke in most Hispanic food markets/tiendas. I dorecommend using a straw to drink it though as the sugar does coat your teeth. Actually, the US is just about the only country where coke is sweetened with high fructose corn syrup...the other countries outlawed it, hence the sugar!

Juli24

@ every day. It’s the smelliest foul looking stuff ever. I can’t wait until scientists see my wisdom & tell people not to bother with the disgusting stuff! Real men drink Coke! I had completely forgotten how good Mexican Coke tastes. It’s not easy to get in Wisconsin but worth the drive to a specialty market. I had one of those BIG 4th of July cupcakes today. You know the kind - they give you red, white & blue lips! Will finish that six pack off & get another before the 4th I’m sure! It only comes once per year! I know I will never be “normal”. Normal is nothing more than a setting on the washer. I just do the best I can & actually manage to eat somewhat healthy. The change I do want to make is to quit feeling guilty when I don’t live up to other people’s expectations. Life is too short I’ve learned. Hugs to all

BellasMomToo

I know Costco (in the SF bay area) sold Mexican coke. Not sure if they still do.

Sara536

How does one identify Mexican Coke? Do you check the ingredients for sugar or does the label say it’s Mexican? Thanks

Trishyla

They are in the refillable glass bottles and the writing on them is in Spanish. They usually say bottled in Mexico. And they really are better.

Trish

MuddlingThrough

I'm in the steam room. Why? Two words: insurance company 😤

Also I've called MO's office three times in two days related to insurance. First time they said the lady I needed would call me back. Nope. Both calls today, was on hold for nearly ten min then they hung up and I got an earful of dialtone. Oh yes, I'm steamed. Surprised too since they are usually pretty good about calls etc.

sas-schatzi

I only crave a Coke once or twice a year. I will certainly try to find the Mexican brand Thanks

Amica

I am so disgusted with my family doctor's nurse. I am a 20 year Stage 2 survivor, I had my original treatments in the U.S. where I used to reside. Now I'm in Canada, and recently a fast-growing 30mm x 40 mm "suspicious" for pathology lymph node has been found below my collar bone on the affected side. I am scheduled for core biopsy next Friday the 13th (yay.)

I called my doctor's office today to ask if maybe I should have an excisional biopsy instead of core biopsy since it seems to me they are going to have to remove such a large mass eventually anyway before it grows and impedes blood vessels like my jugular vein etc. And that way they could see the margins etc. The nurse actually says to me: "If you choose to have an excisional biopsy and then it turns out not to be cancer, then you'll be charged for cosmetic surgery." Now what kind of bullcrap is that? I have a radiologist's report that the mass on my chest is "highly suspicious for a pathologic lymph node", he recommended biopsy, the mass is HUGE, it is situated a few inches above my original tumor, and if it turned out to be benign I would be charged for a cosmetic procedure?! This nurse must be nuts. This would mean anyone in Canada who has a biopsy for a suspicious mass, and then has the good luck for it to be benign is then charged for a cosmetic procedure?! That cannot be true. A medical system CANNOT work that way.

I also asked this idiot nurse if it would take a long time to get a referral to a cancer center because I was concerned about wait times in Canada and her answer was, "If you don't like it, why don't you move back to the U.S. and get your cancer care there?" Now what kind of BS reply is that to a person who is in high distress and struggling with a likely cancer recurrence after 20 years. So rude and unfeeling it just makes me want to cry. A receptionist at the same office hung up on me when apparently I was talking too loudly. I'm friggin' upset as hell, so excuse me if I raised my voice and wasn't all smiley and pleasant over the phone. I just cannot believe the staff at this place.

Pi-Xi

Oh, Amica! I am so sorry. What a horrible experience! I wonder if there is less incentive to be sensitive in a non-competitive medical system.

Wait times in Canada can vary significantly by location, but compared to what I read from Americans, they are longer.

Amica

Pi-Xi Thanks for replying. Yes wait times area definitely longer. When I was diagnosed in the U.S. I had a biopsy and results within days of a suspicious mammogram and ultrasound. Here things are taking weeks.

I have noticed the Canadian healthcare staff are not as pleasant, because they don't have to be. They don't have to worry about customer service because they don't have to compete for patients. Also they seem very very rushed. I am not saying the American healthcare system is perfect, far from it. It is not equitable because of the huge problem of the whole health insurance mess.

In my opinion there should be a co-pay for healthcare in Canada, like just $10 a visit. And very low-income people would not have to pay it. It would pump MILLIONS of dollars more into the system, and allow them to hire more doctors etc. In the U.S. people pay WAY too much out-of-pocket, in Canada, I feel that people could pay just a little MORE out-of-pocket. Most people could afford a $10 fee per doctor's visit.

couragement

hahahahaha, I am having such a nice laugh finding this. I did a search on sugar, as I wanted to see how many folks still eat sugar. I just polished off a nice Trader Joe's Birthday Cake bar and I find myself doing it about 2x a month. I also have a girlfriend that takes me out for pancakes and bacon once a month for lunch. I am so tired of feeling guilty. It is really only me creating the guilt and I want to lose the guilt and feel free. Lula, I love #5. I love green tea and have had about 10 cups a day for over 20 years. When people who know I drank that much find out I have breast cancer they say "well, it might have caused it, or it might have kept you alive." Really?

Lula73

Here’s another good one that came up on FB the other day...

ShetlandPony

What naughty, naughty cancer patients, consuming cakes, cokes, bacon, and wine. I'm glad I don't do that (she says while downing chocolate pudding, man I love this stuff). I really do live healthy as I believe it helps me, and I also know that happiness contributes to health. And this chocolate pudding is a little bit of happiness in a bowl.

Joining in on the steam regarding how these phone calls and long wait times and correcting others' mistakes and trying to keep up with everything impinge on our precious time and peace of mind! And phone trees! I hate hate hate phone trees. The chipper voice never gives me an option that describes my need or question, and they take forever to navigate. Then if and when I get a person, they ask me all the same questions I just answered for the chipper voice. I spend hours of my life each week on this garbage, I kid you not.

jaycee49

Continuing on the phone call mess, it took me two weeks to get a med called in by my urologist. I called on the Mon before July 4 and left a message. No reaction at all. Then I had a plan. Call when they are closed. I called on July 4th. I got a very nice woman from their answering service. I trusted her more with my message than people from their office. Got a call back the next day. Actually, TWO call backs. And the rx got called in TWICE. I think a couple of nurses are having a turf war because my NP left and things are shaking up a bit. It took several days for the rx to show up at the pharmacy. Well, two rx's. Walgreen's balked because there were two and didn't fill either. They said I was refilling it too soon. WHAT??? That took a while longer to straighten out. I finally got the pills, none of which I have taken for fear of side effects. Ah, life with BC.

Then there is my specialty pharmacy. They call me to set up delivery of Ibrance every month. I repeat, THEY call ME. Then they put me on hold. WHAT??? I say again. THEY called ME. I understand when I call them. They put me on hold but if they call me, I shouldn't be put on hold.

Maire67

Great idea Jaycee. Call off hours. I’m going to try.

After 3 calls to nurse and an email to the doc I was in trouble.. really. My mo told me GP. should be setting up the port placement. It took 3 weeks to accomplish. (3 rd port) 4th attempt. 2 screwups plus infection 13 yrs ago. Now I called nurse this week regarding pain issues and MRI results. No response to the question what did the mo find out after talking to the radiologist?..last week.


Now I see my tumor markers doubled and the report was sent to another mo in the practice. So Sunday I will call email etc and hope my message gets through. I have been with this mo for 13 years and hate to change. Her staff must have a lot of infighting going on. I feel the vibes. The main nurse is always in the halls chatting with other staff about weekends etc. And then there is the nurse navigator who directs your calls. I write out my message so I can repeat exactly..at least 3 times. She never gets it right. Too many layers.

I know people are in worse shape than me. How do they ever navigate these systems. I’m usually a very polite person but I am about to loose it. That’s a whole set of issues to bring to oncology conference. Communicating with the patient. Wow that felt good to vent. My husband doesn’t want to hear it. I guess I don’t blame him.

jaycee49

Cross posting but I love this poem so much. A very good friend posted this poem on Facebook this morning. I think it was for me. Now, I give it to you.

"Hope" is the thing with feathers

BY EMILY DICKINSON

"Hope" is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I've heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

Amica

That's a beautiful poem Jaycee49

Regarding all the communication problems, I can relate, isn't it amazing that technology is so advanced, everyone has a cell phone, medical offices and pharmacies all have sophisticated communications sytsems, communications are supposed to be easier than ever -- but it often seems more and more difficult just to get basic things done! You have to communicate with a bunch of different people just to get your message to the person you are actually trying to reach, like the doctor, and then by the time you do, your original question or message has been mangled by a bunch of intervening message takers. And God forbid a human should ever just answer a phone anymore at any medical office--no -- it's the dreaded phone tree! And sometimes your choice isn't on the selection menu and you have to press a choice you don't want, and then maybe even start over lol It's madness.

pajim

Working the system is always fun. And I'm willing to work within it. To a point. When I'm about to explode I e-mail or text my MO. It's funny. He hates technology (read the EHR at his hospital). So he's famous for messing up prescriptions and orders and the like. And he doesn't respond to pages from the pharmacy. But lo when I text to tell him I've been here an hour and could I pretty please have my meds so I can go home I have my meds in 5 minutes.

For the messed up orders I bribe his clinical assistant. I send chocolate every six months. Works like a charm. I can then e-mail and say "can you make sure he did this right?"

He just doesn't realize the impact his hate hate relationship with the EHR has on others.

But here's my rant for the week. I'm signed up with the MBC Project. They send out a kit to take to your next blood draw. The phlebotomist is supposed to draw one extra tube of blood and you Fedex it back to them. OK. I take in the kit. The person drawing the blood says to me, oh, we can't draw tubes for some other place. I decided not to explode. Instead I politely pointed out that the MBC Project is run by a doctor AT THIS INSTITUTION!!! She eventually called her supervisor and received clearance to draw the extra tube of blood. I'm considering writing a letter to the PI describing my experience. If this hospital (DFCI) expects other labs to draw blood for them, they should be willing to draw blood for other research groups. It's a hideous policy.

vampeyes

RANT: I am tired. I am nauseous. I am tired of being tired. I am changing my diet, adding in new vitamins, I want to exercise, but cleaning the windows hurts. I was finally starting to feel better then I caught a cold, lost my step dad to this God awful disease and I feel nauseous every day. What's frustrating is not knowing the cause for the exhaustion and nausea and the gravel doesn't help the tiredness. I am too young to be sleeping and laying around all day!!! My kids need a mom not a zombie!

Thanks

Micmel

you're not alone vampeyes. And I am truly sorry about your step father. My step father is an incredible man and so i am beyond sure you feel the same. Sending hugs to you. I am 48 and feel 88. I am very sorry for your loss. So very sorry. Much love ~M~

JKL2017

Vamp, you are dealing with so much right now that it's understandable that you are exhausted. You need to grieve & then you will begin healing. For now, concentrate on yourself & the people you love. Take care of yourself & each other. Do something that makes you happy - visit a friend, buy yourself some flowers, have a glass of wine while you watch the sun set.

You can get back to everything you need to do when you are feeling stronger. In the meantime, let your sisters here lift you up.