STEAM ROOM FOR ANGER

jaycee49

Remember when you could call a doctor's office and make an appointment, like right then? Now, with most of my doctors, I have to call, be put on hold, be forgotten, call back, be put on hold, get someone to tell my story to (who has to ask what meds I am on even though they haunt me to put that stuff in the portal which I do), and then that person tells me someone will call me back. If that happens (it's Friday, who knows?), I will have to repeat my story again with questions about meds, etc. and hope I can schedule an appointment then. With one of my doctors, I have to DRIVE to their office to make an appointment. When you get put on hold at the beginning, you are told you are number 547 in the call list. You give up pretty easily. If you last through the hold time and get a person, you are so angry and frustrated it is difficult to tell, much less remember, your story. They hear your anger and get all defensive. The whole situation is getting impossible to navigate. I hate it.

Now I have to: 1. make sure my phone is charged, 2. make sure I always carry it, 3. don't go out so I don't miss the call while driving, 4. answer any number, even if not in my id'd list (they use a different number every time they call), 5. always answer calmly and in a friendly way so as to not piss anyone off. Just me. I'm pissed off.

Flynn

Jaycee- I know those exact steps! The first 2/3 of my treatment were at a different facility. Well respected but a disaster to deal with. I felt like I was jumping thru hoops to beg for treatment and honestly, they had such incredibly poor administrative skills. I’ve received other opinions and all concurred with my actual treatment. Then we moved and I now go to another respected facility but it’s like night and day. People are nice, you don’t wait hours for simple tasks...it’s like I’ve moved to another universe. I didn’t even realize that other centers can treat you like a person so I didn’t complain. I’m sorry that you have to put up with that!

jaycee49

Thanks, Flynn. I knew I wouldn't be the only one. The biggest problems are not my at cancer center. I could call them anytime, 24/7, and get a response. Everyone is always nice at all my doctors but efficiency is the problem. I know they have to handle way more patients than they they have staff for. I know that. This particular doctor, today's problem, is my regular gyn. They seem to concentrate on women having babies. I'm sorry, but I am past that but still need gyn services. It's almost 1 PM here. Still no call. Let the weekend of the burning crotch begin.

AliceBastable

I've dealt with nice, efficient people everywhere but at my PCP's office. If I call for an appointment, they can't ask nicely what I want to see her for, it's just a snarled "What for." I even had to play the damn cancer card at one point last year, for which I got "Hmph" in response. And there is NO patient portal so I HAVE to speak to these turds. I am currently shopping for another doctor, partly because of the years-long stress of dealing with this problem.

bcincolorado

Just actually heard someone say that breast cancer is caused by "bad cells and that is caused by "bad eating and too much stress". Really? If that is the case, they should just educate everyone just tell everyone no stress and eat better and cure breast cancer, right? How dumb can you be???? Hard not to lose it sometimes and yell at people when they are being dumb.

nanette7fl

I've had people shoving it down my throat that if I was thinner I wouldn't have gotten breast cancer! Just because fat cells produce estrogen they can't honestly produce that much to make the breast cells go into overdrive!

DancingElizabeth

Nanette: WTF!! On the “If you were thinner” How f@cking RUDE and IGNORANT!!!

I have been thin all my life. Weighing in at 120 pounds - the day I was dx’d!!

Meow13

I was 123lbs when duagnosed.

bcincolorado

I was 117 when I got it. Not even 50. Did regular exercise. Ate low sugar, low carb, low sodium for 10 years due diet restrictions of DH and his medical issues. Still got it. To hear someone act like you can "avoid cancer is so ill-informed. You'd think someone who had had breast cancer (like that person did who said that even!) was so crazy! She actually said that her doctors refused to believe her but she came to believe it during her treatment. She is convinced she is totally "cured" now too. No one is ever totally cured. Those stupid cells are there and risk never goes away no matter what stage you are. She is living in a cave and ignoring the truth.

Vilma65

I think this group will appreciate this:

nanette7fl

I love it!!

bcincolorado

Kind of funny

mysticalcity

I've weighed 105 lbs pretty much my whole life and was that weight when I was diagnosed and still am that weight. So from my perspective weight has ZERO percent to do with getting breast cancer. I eat healthy -- I did everything possible that goes into prevention and I STILL got it--so again from MY perspective the doctors truly don't know what causes it--I'm leaning towards all the things we've done to poison our food and water with genetically modified stuff and preservatives and chemicals. But who knows??

pingpong1953

I always wonder about all of the pollution I inhaled during decades of driving in rush hour traffic. I think that has more to do with it than the extra pounds I'm carrying around.

Mominator

Jaycee: regarding " answer any number, even if not in my id'd list (they use a different number every time they call)"

Most offices have multiple phone lines, maybe 4 or 8 lines depending on how busy the office is. You call in on the main line, but if that line is busy, you get dropped onto the next available trunk line. But to caller ID, you still called the main line. When the staff calls out, they too may attempt to call out on the main line, but they also get dropped to the next available trunk line. This is where you will be seeing the different lines. 

I had to manage the phone system when I was the office manager at a previous job. So we might have the main number such as 908-555-2100. The trunks usually would be similar numbers, 908-555-2565, 908-555-3678, and so forth. 

I have a weirdly opposite problem: several hospital systems have been merging. Now, almost every facility is now part of Hackensack/Meridian Health (two systems merged), even primary care doctors and pediatricians. So every call, and every bill, comes up Hackensack/Meridian Health, but the calls and bills are for different providers. Very confusing. 

Good luck,

Madelyn

AliceBastable

I have to say, I do consider myself cured, unless and until shown otherwise. I've had the surgery, re-excision, and radiation, and I take Tamoxifen to control hormone output just like I take Metformin to control diabetes. Good grief, if I thought I still carried around cancer cells after surgery I'd have been a wreck since my first one in 2008. It would be different if mine had been a higher stage, I guess.

VLH

Mominator, I had a similar issue. I had surgery, radiation and chemo at three different locations of the same umbrella oncology corporation. My treatment spanned two years and I finally gave up on trying to figure out the billing. Somewhere along the way, I paid hundreds more than my $5,000 maximum out-of-pocket the first year, but I mostly did all the cancer care alone and had to pick my battles. It would have been nice to have someone to manage all that crap when I was so weak that I had to use a wheeled walker and rest two or three times hauling myself into chemo infusions.

Ancient Egyptians reportedly had breast cancer. Granted, they used some pretty toxic chemicals in their beauty routines, but obviously didn't have, say, car exhaust to blame so it seems like there must be something besides current environmental factors in play. That's not to say that we shouldn't try to reduce toxins in our daily lives because the stuff in our air, water and food is truly frightening. It would likely be too late for me personally should I face metastasis, but I'm hopeful that ongoing research that drills down to defective genes will eventually provide some valuable answers beyond the current poison, slash and burn treatment plans.

JJOntario

Thanks everyone for your support regarding my skin cancer surgery. It's been a few weeks and it's starting to heal. I met with my surgeon on Friday and the hole has not completely closed. It's still red but the scabs are off. I made a comment to my MIL that I will look into every treatment to get rid of this scar and she flipped off saying "it's not that bad".... this coming from a woman who complains when her hair isn't trimmed right. So frustrating

nanette7fl

JJOntario.....I think Mederma makes a scar fading cream. But I think there are other creams you could also use. I'm sorry about your MIL they say the darnedest things at the wrong times don't they.

AliceBastable

Well, I just got back from my first (and, I hope, only) PET scan. As I was registering, the clerk said, "And your co-pay will be $949.00. Would you like to pay now and get the 15% discount?" What. The. Fuck. That's about the TOTAL of my co-pays for three surgeries and multiple tests last year! The ONLY reason we could pay up front and get the discount is because my Mom died in January 2018 and I got some of the money she had saved to cover her own possible health issues. And this obscene amount is WITH insurance, and at a Catholic teaching hospital. I almost said "Screw the cancer check, I need a defibrillator!"

bcincolorado

Wow! To ask they pay it up-front is surprising!!! When I had mine done they billed me after the insurance paid. I did owe a big deductible I know.

AliceBastable

They're willing to bill, but paying up front gets the discounted amount, which was substantial for this amount.

Micmel

I am so sick of feeling like absolutely shit. I get three days or so good a week. The other are spent in bed clinging to dreams in my mind that will never happen. Places I am not able to go. My DH was showing me these beautiful pictures in Virginia of the natural bridge. When I saw how beautiful it was I gasped. Then the tears poured out of my eyes. I SHOULD HAVE BEEN THERE!!!!!! My soul is crushed into a million pieces. I layed there crying. In silence as these wonderful memories rolled bye, memories I will never share. Like a snap shot of time when I'll be gone and these are the things that he will do. Meet someone else who is alive and taking their own pictures, is more how the story will go.

I will be pushed into a cabinet somewhere to be that someone who has passed. Someone who used to love and live and feel. Someone who used to be able travel to see the beauty around. It's clear, I am just struggling daily mentally with this shitty disease. But also so clearly. Physically. None of which I have control Over. People can only watch you cry so many times. It gets so old. I am even sick of myself.

Fucking cancer. Life destroyer. Piece of shit. Family ripper. Body crippler, fear monger son of a Who*e..... all I can do is offer anger. Here. Helpless not knowing. Who to even be. As I am left face down on the beach of hell, hair stuck to my face because of horrible heat, and sand coating me , spit out, even the ocean didn't find me useful. And so I wander. Not knowing really where I am.Or where I am even going.. Just lost. In some world. Which is partly so true. ... floating in and out of reality. In and out of despair. Broken forever. I am not going to get better this time. No I'm not,MBC takes. It certainly doesn't give anything but misery and fear. Such torture. Who wants to live like this??

bcincolorado

Oh michmel. Hugs to you and I wish I could help ease your pain.

Lita57

Micmel, What chemo are you on now? Forgive me, you've probably answered this b4...but are you also taking an antidepressant?

I find that Gemzar makes me VERY, VERY tired and moody. Of course the steroids I have to take for all my brain mets and the pressure behind my eyeballs and optic nerve don't help matters either. I take Med MJ for some of the pain,to lift my spirits up, and keep the brain seizures at bay.

Somehow, I manage to trudge on. I try to walk a little each day, even if it's just around the periphery of the grocery store (I can push the cart and lean on it when my spinal mets and adjacent muscle mets start really hurting).

I wish I could still read novels, but my eyesight is totally gone. Just ordered 4.0 cheaters for reading. 3.0 is not quite strong enough, but 6.0 was WAY to strong and felt weird...so now we're trying the 4.0's and we'll see how they do. They will be delivered sometime next week .

Hope you're feeling better.

L

nanette7fl

Micmel I'm sending you tons of cyber ((hugs)) I don't know,what to say except that I hear you my dear friend. Blast away and get it all out of your system !!

AliceBastable

Some days are just crap. I found out today that a good friend just got put into hospice care (ovarian cancer). Another good friend got diagnosed with neck and tongue cancer today, but he can't get details until after the weekend. I'm waiting to get a biopsy scheduled that might bounce me into a different stage of renal cancer. Crap is too nice a word.

mysticalcity

Micmel, Sending hugs and prayers across the miles.

bcincolorado

Alice sorry about your friends. Life stinks all around some days.

AliceBastable

The friend who was put into hospice care just yesterday passed away this morning, on her 57th birthday. It's like being in a horror movie, with a murderous monster who steals lives.