STEAM ROOM FOR ANGER

SierraPineapple

Privacy is a joke. In infusion centers you read your full name and DOB while talking about your bowel movements to the nurse with just a curtain to separate you! Even then, many times they don’t close the curtains and use your little square space as a thoroughfare to the other curtain cubbies.

Artista964

My my driver's license was up for renewal. I had to go in person of course. I got it done wearing a surgical mask praying I wouldn't get sick in that sardine can room not long after bilat mxs.

SheliaMarie

The worst thing doctors offices do imo, is ask what you’re being seen for when making an appointment. Not your business, schedule lady, not your business.

Micmel

I agree with each and everyone of you. They certainly do announce your name and information for sure. There is no privacy. Is actually insulting to call it a private act at all. Good points made ladies each and everyone of you

pingpong1953

When my mother was in a nursing home I had to discuss her social security info with the SS office. They insisted on talking to her to get her permission to talk to me (I was her POA.) I had to take time off from work to visit her at the home during the week so we could talk to the SS rep. I could have had any little old lady in the place claim to be her and they wouldn't have known the difference. What a crock.

VLH

The stricter standards for issuing drivers' licenses is related to the "REAL ID Act" of 2013. It's related to Homeland Security because some state licensing agencies had very limited ID verification requirements and fake versions of their cards could be easily reproduced. Unfortunately, the current requirements sometimes border on the ridiculous. Not unlike Lita's situation, my 85 year old mother's birth certificate had a minor typographical error in it. It mattered not that she'd filed tax returns, voted and been issued a driver's license with the correct version of her name for many decades. She, too, had to produce her marriage license from the 1950s to show the transition from her maiden name. It's one of those situations where the intent is for the safety of all, but the execution for older folks with decades of paper trials gets ridiculous. If you have a paper trail that starts in the 1930s, it's pretty unlike that you're secretly a foreign agent hell bent on the destruction of the USA.

Asking the purpose of a medical appointment at the scheduling desk seems intrusive, but there is a logical reason. Doctors allocate a certain amount of time depending on whether a patient is, say, having a routine follow-up appointment related to mild hypertension versus, say, a new patient appointment. I agree, though, that privacy often goes by the wayside in the medical world. I was glancing through one doctor's HIPPA form and saw that it included releasing my information to fundraising organizations. I don't mean to be a curmudgeon, but NO! I handed in the form with that section marked through and initialed. To add a little levity to the privacy discussion, I once dashed into a convenience store to tinkle. I wasn't quiet about sneaking into a stall, but was shocked when a woman in the stall next to me ordered pizza delivery and loudly announced her name, address, phone number, credit card number and related security code! DOH! The gross-out factor of having your phone in your hand while you're excreting in a public restroom aside, I faced the dilemma of whether to flush while she was still on the line. Yup, I did!

Lyn

Kattysmith

I'm frustrated and angry. The third week of October ,after my last PET, my MO let me know that my last treatments weren't keeping me stable and he thought that a clinical trial was the way to go. We've always had a good relationship, good communication, and I always felt that my well-being was primary. He conferred with the Clinical Studies dept. and had input into which trial he thought might put the brakes on my progression the fastest. So, I met with the CO, who I liked very much. He explained the study, I was comfortable with it, and got scheduled to start screening tests around 11/10. I felt that I wasn't going to be a lab rat. The next follow-up prior to that, the CO had an emergency, so I met with other members of the trial team, who told me I was being considered for a different study - one involving immunotherapy - which now had an opening for a patient. It was all overwhelming, but signed the consent after there enthusiastic presentation. Since then, it's been nothing but delays in screening tests, then there was a problem with the sponsor and the timeline in which my biopsy was done, and I've now been without treatment (even ineffective treatment...) for TWO MONTHS with aggressive liver mets!

I FINALLY have the rest of the screening tests tomorrow and will find out Monday whether I will be in this trial or not. I'm frustrated and angry and scared and trying to figure out how NOT to unload on my new clinical studies onc...I don't want to get off on a bad foot, since this dept. may be my last train to Clarksville. He did say that he would make sure my former MO was comfortable with the change. I went from being a stage 4 patient who managed to stay very zen because I felt cared for, and now I feel like I've been left twisting in the wind due to bureaucratic issues. My hubby kept telling me to contact my former MO, but there's nothing he can do. I want to be diplomatic, but I don't want to be taken for granted, either, just so they can get another trial patient.

I just don't know if this is SOP for clinical trials...I started a thread and got a couple of responses, but that was it. I have a good old friend who's been in trials for the past 2 years, and she would have been my perfect go-to, but she is quietly winding down her life in hospice, G-d love her.

Thanks for letting me rant.

jaycee49

I want to give people an update on my financial assistance saga. After talking to my MO's money person and Pfizer directly, they both advised me to drop the Advocate My Meds people and apply directly through Pfizer. A very specific letter had to be mailed to Advocate My Meds to de-enroll. I'm hoping they play nice and don't charge my credit card again. I sent that letter registered mail so I'll have proof that I sent it. I also faxed the application documents to Pfizer using Federal Express. (My fax machine is broken. Faxing things is really outdated now and I had already attached pdf files to an email to Advocate My Meds. No one else uses that method and I appreciated that about Advocate My Meds.) While I was writing this, Advocate My Meds called to let me know that they had sent all of my documents to Pfizer. Great. Now Pfizer has two sets of my documents. I guess I still need to straighten that out. The Advocate My Meds people were very nice about cancelling my enrollment and said that my credit card would not be charged again. I don't think it is a bad organization. If a person found the application process to Pfizer daunting, they would be a viable choice to get competent help. I always had friendly and helpful people on the phone. I decided that I didn't want to pay $49.95 a month when, after approval of my application, they wouldn't really be doing anything. With so much money floating around in healthcare, these niche industries are bound to pop up.

If you want to apply directly to Pfizer, the phone numbers listed on their website are confusing. They have a program that offers a variety of kinds of support. That number is 844-9IBRANCE (I know, too many digits but if you don't dial the last digit, you don't get through.) The number that gets you to the financial assistance people is 877-744-5675. You have to lie to the first menu and say, yes, you are enrolled. The person at Pfizer told me to do that. And when faxing documents to Pfizer, you have to do it from a phone with auto-dial or you will never get through. The person at Fed Ex told me that.

I wrote the above description yesterday morning, Dec. 5. Update to update: yesterday afternoon, I drove to MO's office to give them more things to fax to Pfizer. I may be done … or not.

Kattysmith, it may be time to be a little less diplomatic.

PatsyKB

Capecodgirl - If I were you I would send the message privately. He needs to know that one can't “prevent" breast or any other cancer. Otherwise he'll keep spreading misinformation which only makes the uninformed patient feel guilty as though he or she could have prevented cancer. I really resent it when people voice this kind of nonsense. There are a lot of other things people say which piss me off but I won't go into those.

Send the message - for yourself as well as for others. If you have a link to an article about how cancer is not preventable through diet or exercise send that too!

JoE777

PatsyKB,

bcincolorado

Rant that people think you "need a break" from work and cut your hours and/or lay you off after you have been a faithful employee when things slow down a little bit. They can claim it is for financial reasons they are cutting staff and do cut others without cancer but you are singled out who really needs the insurance and just can't help but wonder when the comment is made that "at least you can take a break" and rest up for a bit. Really???? What about the bills when you are the sole breadwinner in your household and it is Christmas?????

KatyK

Ugh! Need to do a little ranting here. Went to my MO appointment, have not seen her in three months and when I check in they say I’m seeing the nurse practitioner. I was not too happy about this because I had things to discuss with the MO that the nurse practitioner can’t make decisions on and it has been three months. Also they changed it a long time ago and no one bothered to tell me! Very upsetting! They said I could wait to see MO but I chose not to. I’m really not impressed with this treatment center, it seems adequate at best. Now I’m scheduled to see the MO in February, so it will be five months between appointments. I wish I lived closer to another cancer center.

LoriCA

bcincolorado I'm so sorry to hear that, bad enough at any time but it's even harder when they do it during the holidays. Wish there was something I could say that would make it better.

KatyK any chance your MO would consult by phone? Mine has been great about phone calls between appointments when needed if it's something my nurses can't handle, even though I see him at least every 3 weeks.

bella2013

KatyK, I can’t believe you are Stage IV and you get passed down to a nurse practitioner. That is not right

Beatmon

Nurse Practioners are great, but I want to see my Physcian only. I don’t want to see someone who doesn’t know my history and treatments. I don’t want to have to repeat my history eveytimenas staff changes. After the first time I was shuffled to the PA who only listened to my cancerous lungs from the front only......not right! So I make it clear when making appointments who I will see. My family doc is really a PA with whom I’ve had a long standing relationship that I adore. She knows me, My history, my family etc.

I don’t blame you at all for being fussy

Capecodgirl

PatsyKB-

I did message him letting him know this info. Based on his facebook live presentation I feel he is in is this for the $, and has zero interest in promoting the truth if it does not benefit him financially. When I explained to him that the bc is not prevented simply by making better lifestyle changes (and per his presentation getting regular chiropractic adjustments), his reply was to thank me for my interest and direct me to an amazon link to buy the book that will explain this all to me. What an asshat.

Meow13

snake oil alert.

bcincolorado

Thank you Lori. Have not been able to get past tears enough to even file unemployment yet. Was told today when I went in to my former workplace to clean out my office that MAYBE in February they will have enough work to get me part time enough to pay for COBRA. Boss seems to think I can "relax for a bit" until she thinks she can get me back to work. Really???? Kind of hard to do when there are bills to pay and I am the breadwinner in the family and have a disabled spouse. Just pray I can get meds filled before insurance is out so I at least have that covered for a bit.

Capecodgirl

Meow13

Lol snake oil alert. That is funny

Micmel

sometimes life sucks real ass. Just sayin

bcincolorado

Sure does. Still have a bruise from flu shot had to get last week too on top of it. Forced to get them since DH is immuno-suppressed and doc insists I do so I do not end up killing him. New nurse. She claims she worked in peds for years. Not sure how since she sure hurt me like crazy.

Micmel

I am with you colorado. I was supposed to go and see my dying father today. The kicker is. We were estranged for 16 years. He chose the step freaking monster over us four kids. Fast forward 16 years. After. I was divorced and they chose his side. I got diagnosed with stage four cancer denovo and told I had 3 years tops for sure. He did call when he heard about it. But he wasn't in good shape at all had a terrible heart attack at year 13 and when I went to visit him. My step monster hadme banned from his bedside and had a password put into place for his visitors. I wasn't allowed to see him and didn't know if he would make it. He was in icu. Now. He's dying for sure. Hospice monitoring him. Not doing well, the step monster now has to work. She spent all his money long ago sitting home buying everything she could and traveling everywhere. Now what? Money is gone she burnt all bridges with people that would have helped had you been civil ? Now my dad needs us. And I am sick. Fatigue is a monkey I carry every single breath I take. Every move I make it's like moving through tacky strip tape that your shoes stick to. Exhaustion is really no explanation for what is felt. I wanted to go today and couldn't. It's a very disabling disease for sure. Chronic is the key. I had three great days. Felt good. Now these past three days awful. A ride I'll never get off until it's really over. Like I said life sucks ass sometimes.

bcincolorado

Oh Michmel! That is terrible!!!!!!!! How awful!!! How can someone be so hateful and keep you from your own parents? I will pray her heart with soften and you will have the strenghth to make peace with him before he is gone.

nanette7fl

micmel......... all I can say is OMG!!! I think step-monster is too kind honestly. If your dad's in hospice and you can find out where you can contact them and get the visiting hours and go and see him for yourself. Having dealt with hospice recently SHE can make all the fuss she wants BUT they're all about your dad and family and YOUR family and have a RIGHT to see him.

sending cyber (hugs)

Micmel

When I attempted to see him when he had his first heart attack, she had me banned from seeing him. That was about 5 years ago maybe more. This time he is dying and he is at home with a check in hospice nurse. I have seen him three times in the past month, today would have been four. I have been trying To focus on him. She's now all of a sudden “ok" with me seeing him now. Because she needs help. So she “ texts for him “ since he's so weak. She knows I have stage four cancer. Last night the text said “he loves you and misses you and you can decide if you're able to make it in the morning." Excuse me what??? my sister just told you a half hour ago, that I wasn't feeling well back on my first week of chemo.

What happened was my sister. Called her and told her I wouldn't be coming. Step monster then texts me for “dad" and gives me this guilt trip if you can make it shit. Makes me so mad. I want to throat punch her. Everything is so damn hard. All I want to do is help my dad. Even though he has no balls to ever stand up to her. I don't want him to die without him knowing I love him. I don't want see her. It's. A stressful thing alone without throwing in shitty cancer. Sleep can only help right ??

nanette7fl

Right!!! I'll be keeping you in my prayers. I know ppl like her and God has a very special place for them. She only wants to alleviate her guilt and we all can see that. Stay strong. Cancer s%%ks and you don't let step monster eat at you. You're above her and are better for it.

please take care of you ....treatment s**ks

bcincolorado

Oh Michmel! That is terrible!!! Just make sure to take care of yourself too in all of this as well. I know as much as your are worried about your dad it does not help to have your stress level up high as well going through active treatments.

Lita57

Micmel...your step monster is a real B.C. P.O.S.

She probably wouldn't know what that ACRONYM means, so the next time you have to interface w/her, just say in your sweetest voice, "Well, HELLO, B.C.P.O.S, (spelling it out), how are you?"

She'll probably just stare back at you w/a confused, quizzicle look on her face.

L

Micmel

I totally agree. I have no room in my heart for her. I hope she is ready to shoulder it all on her own. She burnt the wrong bridges. Sad really because now my dad is alone and suffering. Everyday seems to get harder. I had three great days. Now the past three have sucked. I hate cancer

DodgersGirl

Lita57–. I want to thank you for your tip for renewing drivers license because of REALID. I received my renewal letter yesterday. It listed all the paperwork needed but does NOT mention marriage license. There is a small sentence about proving a name change though. I wouldn’t have been alerted without your post.

So thrilled my new license with have a photo of my with my Albert Einstein hair that is slowly growing out after chemo.

Just another fun way BC touches our lives