STEAM ROOM FOR ANGER
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I just had some woman give me "the binder". I already had started my own. (supposedly a convenient place to keep your paperwork and related info straight.) She also thinks I may be coming from a place of anger when thinking of my surgeon and the radiologist, because I have cancer .
I would not be coming from a place of anger had they both not really pi$$ed me off.
Radiologist: machine broke, no explanation, no reschedule, just falsified records and moved forward.
Surgeon: Labeled me as a "non-compliant patient" in a computer program for all in this health network and insurance group to see when I have complied with her every request, happily.
OH HELL YEAH! I AM NOW DEALING WITH THEM BOTH FROM A PLACE OF ANGER.
I also took the liberty of explaining to her how her facility had screwed up and cost me 2 weeks time and unnecessary grief. She seemed genuinely shocked. I pulled out my binder and gave her the dates of the 2 week apart incidents so she could check into it. I mentioned that I had every reason to be angry with her facility, but I don't feel I deal with people and things from a general place of anger, because I have cancer
If I'm pi$$ed off at you, you can bet your a$$ you did something to deserve it.
Thanks for the venue.
cb
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Well, cb, if you can afford to get a lawyer--do it. The fact that you have all this documentation is going to be very helpful. May seem drastic to say get a lawyer, but having that in your record can be a real problem. Let us know what you decide. You could to a DEMAND(legal term) letter, but even the wording of that would have to be carefully done. Good Luck.
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cb, I bet I have a notation of non compliant patient at the hospital I had my DIEP. I had my surgery on a Wednesday all day long woke up at about 7:30 pm in recovery room. Then I remember being in "intensive" care asked if I could get something to eat. Nurse looked at me like I was crazy, and said I really don't need anything to eat I have an IV. I said OK I must just think I'm hungry. Then she said they want to my stomach empty in case I need to go back to surgery but would I like some chicken soup. I said yes I feel pretty good. Then in the middle of the night they woke me up because my blood pressure was low. As soon as I started talking BP went to normal.
There is no bathroom in intensive care, they brought a potty chair for me. I was able to walk but I was under the influence of drugs. After the second night in ICU I asked why I was there and not in a regular room. They said they didn't have an open room. I felt a little ridulous because there was no pain I felt fine. The next day I was put in a regular room. The bathroom was grungy really worn out. I guess it was clean. I wasn't happy about the dressing and overall cleanliness and I was bored out of my mind. This was day 5 I announced that I wanted to go home. Well it took many hours to respond. A doctor who was a resident said my blood numbers were low and I may need a transfusion
Are you kidding I felt fine and could walk around the whole floor with no trouble. The last time a saw my teaching surgeon was in the recovery room. I called for him and I got no response. So I called my breast cancer surgeon at another hospital and he got back to me in minutes. I told him that they are talking transfusion and told him my blood number. He said that number is not anywhere low enough to do a transfusion. He said don't let them do it without my doctor knowing about it. That did it I practically busted down the door to get out. I told the nurse to get a hold of the attending physican because I was leaving. She treated me like a was not in my right mind. I told her I was most certainly in my right mind and that my bathroom/bedroom at home was very clean unlike the conditions here and that my husband and mother could take care of me.
Well I got out and never had to go back.
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Thank you for sharing, I did contact an attorney. There's no long term damage/injury so they didn't want to take the case but advised me to get a second opinion before the 2 year statute runs out. So as soon as I feel better I will.
And Meow13, I'm so glad you escaped their clutches. I wish I could.
Tonight I'm still crying and can't sleep. I'm still filled with hate.
I hate that first radiology center.
I hate the first surgeon who operated without a biopsy and markers.
I hate that the cancer came back in the exact same spot.
I hate I have no proof that the surgeon was at fault for that even though I asked her to take an extra margin.
I hate the new surgeon for alerting the whole frickin' world that I'm non-compliant.
I hate her again for not discussing options with me but she did take the time to note that I spend a lot of time talking about options. Talking to deaf ears.
I hate that I ever have to look at her face again because I know when I confront her about the non-compliance thing it wont be pretty.
I hate that the referrals I get are all a big circle of people from the same medical corporation. Even the support groups circle back to this company. I'd like an unbiased opinion and I'm not getting it. All these people work for the same company. My medical situation is not to be discussed over lunch between co-workers like so much gossip, but I know they talk.
I could go on but I think I should take some drugs to help me sleep.
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It's a lonely walk among family, friends and children who willingly or by our intentions have been kept in the dark. I hope we can keep being here for each other and by the grace of God walk through this, crawl somedays and find some bit of peace knowing we fight the good fight. All we can do sometimes is not do one damn thing to help this disease put us in the ground. It is 2016 for crying out loud.... Thought 30 yrs ago we'd have our own rocket cars by now and be chatting with our alien neighbors... Where is the cure?
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7of9 - Thank you for that. It's a very frightening walk for me with no support group. I can only trust the medical professionals and I rarely have been able to trust corporate shills. I'm so "anti-chemotherapy" and they are so "standard of practice" about it. I'm being made to feel a fool at every appointment.
Anyway, looking to the future, there's a new, very large immunotherapy study being started called Cancer Moonshot 2020. The American govt. rolled it out a couple of weeks ago. You can learn more about it on YouTube. May be promising, may just be a way to invade our privacy? I never know.
They're so funny. With all the money, prestige and medical intelligence working together in this group, the best name they could come up with for their go to video is: Cancer MoonShot 2020 Explainer Video. I always thought an explainer was one who explains, apparently it's a type of video. What happened to introduction videos? Or explanation video?
Anyway, here's the link. I hope it gives you hope or gets you into their study and that you will ultimately be cured.
And last night, I didn't take the drugs and drop off to dreamland. I stayed awake and found a solution. I'm going to have my Primary Care Physician refer me to another surgeon for a second opinion. I found a surgeon who is outside of this medical corporation and I think I'd like to meet her and see what we think of each other. I know that the medical plan of attack will be the same for either surgeon but I'm not thinking a whole lot of good things about my current provider.
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Cb, if you don't want their comments to follow you, do not give permission for your records to be transferred to the new office. Get your own copies so you can look them over and hand carry them. Try to keep cool and not complain about one doctor to another. Keep your goal in mind. Good luck.
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Thank you Shetland Pony.
I have done just that. I took the binder they gave me yesterday an combined it with last year's info into a more discreet binder. I read things, highlighted things and marked pages. I was able to salvage the nice divider tabs in their binder but I really had to stop and wonder about the crystal pink ribbon brooch that came with the welcome card??? Life's too short for me to wonder about that sort of crap.
I am now prepared to meet with whatever the medical community wants to throw at me. I only wish I felt like going outside into the world and dealing with regular people.
As long as I'm sending you all over to youtube, I have some pity party videos up. You probably don't need to see those, but I do have a couple of other vids you might find amusing. Try this INTRO video and maybe try the BONUS vid, the rest are pretty bad.
Enjoy your day.
Carmen B. (aka cb)
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Feeling sore, bruised and ANGRY from a stereotactic biopsy done today that was supposed to be done at initial dx. Waiting for results AGAIN....so tired of this. DH just doesn't understand that I'm exhausted after today...so many mammo pics, blood bath during the biopsy....today I'm just wiped and angry
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JJOntario, I had that done, along with marker placement at the end of January. It seems like such a simple procedure and you don't think it's going to hurt and then the local wears off. I was sore for 2 or 3 days. I just kept stuffing little ice packs in my bra until I got tired of it and quit. I hope you heal up soon and can raise those arms again.
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It's been a bad day and I need to vent.
I had a total hysterectomy 12/31 and have been off work up until today.....first day back. During my time off I've been making a real effort to put cancer and health issues in the background. After dx and tx and all the hell that was I have put so much energy into fear and worry that I just had to stop.
So with that said, I got a call this morning from MO's office that my last labs showed elevated sodium and I need to go to the ER. WHAT??
Then my PC doctor calls and says he agrees. I tell them that I can't go unless this is life threatening as this is my first day back to work. Let me tell you though, my heart was just sinking. It's like it never freaking ends!!!
Finally they tell me to drink lots and lots of water, come back in the morning to recheck.
Then later in the afternoon I get another call saying they believe it was a lab error all of my numbers were screwy.
It just really threw me for a loop. Sometimes I think I'd be better off just not going in for MO checks anymore. Mentally and emotionally it wears me out.
I know this was long had to get it out.
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JJ...I'd pick either my double mastectomy surgery or my double header lymph node dissection/hysterectomy surgery over the nightmare from hell biopsy they did with the machine when the (sorry) bitch resident told screaming me that they'd used all the numbing medicine. There was blood on the floor, I opened up and gushed blood at home...all from crappy scar tissue as that breast didn't have any cancer in it anyhow. That procedure was BS. The biopsy I had done by hand last time was butter.I will never get on that machine ever again I swear it!
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Tangandchris - I'm also scheduled for a total hysterectomy (abdominal cut) in April. I just found out on Monday and I'm wondering how it's going to be?? I have an 11 cm mass that they are pretty sure is just a big freakin fibroid but they had us scared it was something else... Why is it since dx all of this stuff keeps popping up??? How the hell did I not know until now that I've had something as big as a small cantaloupe in there?? Boob is achy and sore from yesterday's biopsy. Stereotactic biopsies are friggen barbaric and waiting for results is just as bad. To top it off my work rang my cell as I was leaving the hospital. They KNOW I was having this done yesterday...if they'd have checked my file. I didn't answer it. Thankful for voice mail and caller ID and you guys here!
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JJ, have you had a vaginal ultrasound to check that mass? Seems like they should be able to tell if it's a fibroid. I had fibroids for years,, and GYN monitored with ultrasound. I had robotic HX in 2014. Curious why they need to do an abdominal cut on you,,,,
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Having the abdo hysterectomy because they said the other ways weren't possible due to how big it is (I can see it when I'm lying down) and it's throwing me off because it wasn't on my radar. I had both US and MRI and they are saying its a fibroid. The concern is its size and how fast it is growing. The recovery for this type of hx is supposed to be 6-8 wks which is also freaking me out as that seems like a long time and it will thro me into instant menopause at 44.
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JJ, of course I don't know everything that has gone into the hysterectomy recommendation for you and it may indeed be the best thing to do. But I wanted to say that I had considered surgery for two large uterine fibroids that grew larger while I was on tamoxifen, but now they have shrunk so that they are no longer obvious except on scans. Perhaps what shrank them was vitamin D3 supplementation (to correct a deficiency), permanent chemopause, and switching from tamoxifen to letrozole. The logic of my thinking is a connection between low D and uterine fibroids, and the fact that tamoxifen has hyperestrogenic effects on the uterus. You might ask to check your 25 OH Vitamin D level as bc patients are often deficient, and whether a course of Lupron plus an aromatase inhibitor could be tried to shrink the fibroids so you could have laparoscopic or no surgery, and whether it is a good option for you to keep your ovaries and/or cervix even if you have the uterus removed.
http://www.nih.gov/news-events/news-releases/vitam...
http://www.mayoclinic.org/diseases-conditions/uter...
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JJ: I could feel mine when laying down,, but couldn't see it. I got thrown into instant menopause at 56,, yes, much older than you, but it wasn't easy. My estrogen blood levels were over 500,,, what you have when you are pregnant,,, and my GYN was sure that the fibroids were doing this. Maybe it contributed to my 100% estrogen positive BC,, who knows? Should I have had the HX 5 years back when she first recommended it? Who knows? I can't look back. Not worth going there. Can't remember how big my fibroids were,,, but I had robotic HX,,, 3 small incisions and then everything was removed vaginally. I am just telling you this, in case it is a possibility for you. All of the parts get snipped off thru the small incisions,, and then pulled out vaginally. Ovaries, uterus and cervix for me.
also, any chance of drug therapy, (Lupron, progesterone) to try to shrink the fibroids before surgery, so that you could have it robotically or vaginally? Just tossing options at you, in case it's possible. My GYN did tell me that she was starting robotically, but if she found something she would open me up and I'd have abdominal.
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OMG my head hurts. For no physical reason, just the stress of having to deal with Doctors and office support staff. In 2014 I went with zero anti-anxiety drugs. I just had to upgrade from Valium to Xanax. Haven't actually tried to take the Xanax yet, Friday will be my first go 'round. Let's see if it can keep me from replying in kind to the snide remarks of the surgeon's office support staff.
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Today at the chemo office:
me: could you please change my next appointment to Wed or Thurs instead of Tue?
assistent: grmph (great start, as you can see)
After spending 6 hours in the chemo room, everything went wrong and took forever.
me: could you change the appt?
assistent: I didn't look.
I checked the paper and she had just written: the doctor is not available on Wed. My husband wanted to leave, but I refused to accept defeat. So I went to the doctor's assistent on another floor. I asked her the same question. Well, she found a spot for me on Thurs, called the planning office (after I asked her) to schedule the chemo also on Thurs and everything was solved.
Moral of the story: stay calm, polite and find the right people to help you.
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AND...Get their names and call the boss and give'm an atta girl. Except it doesn't work when the boss doesn't pass them on b/c they have an attitude about the employee. Comment cards are good that are in a drop box pick up and sent directly to top administration.
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/start rant
My anger today stems from the inability to see my PCP when I am sick. I have a very complex medical history and when I am ill, I want to see my doctor, who is well aware of that history. But to me it seems that the medical community is moving in the direction of sending you to an Express Care clinic, which is where I am at now. He doesn't have an appointment available for a month. It's always like that when I call.
I'm pissed that someone who knows nothing about me is now going to decide what is going on with someone like me.
/end rant
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I went in yesterday for my first chemo. I was told about 4 hours give or take. 6 and a half hours later I left. My doctor forgot to send the orders for my chemo to he pharmacy. I just had to laugh...
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Again, I'm not alone. Thank you for sharing.
I finally calmed down and made an appointment with the surgeon that the PCP referred me to for a second opinion. Outside of this health care group.
It occurred to me that in 2014, when I searched out the best surgeon in town, I chose her because of her position on lumpectomies and taking an extra surgical margin. This time I'm having a mastectomy. She may not be the best surgeon in town for that and I may be going though support staff hell for no reason.
Just Jean, My PCP has me coming in once a month whether I like it or not, until further notice. You might just schedule yourself that way for awhile. After the first month, all of my appointments seem to be booked far enough in advance to be at my convenience.
MoreShoes: I take these stupid anti-anxiety medications so I can remain calm with the staff. Period. I don't have that sort of patience.
Deacon Lady, Poor thing. You would think someone might have figured it out and called over to the pharmacy during the first hour you waited. That's sort of what happened here. A two week delay in ordering the CT scan is causing issues now, three weeks later. I caught on at the end of week 2 and pushed it to happen.
I really wonder if they have enough patients to be this rude/ineffective. I know this is expensive medical care and I can shop elsewhere. Do they not need the business? I have no idea how much my upcoming necessary chemotherapy costs, but there are 5 or 6 excellent options in the greater Phoenix Metro area outside of this medical group. Surgery is expensive too and if I leave this doctor because of her rude staff, the associated hospital is going to miss out on that money too.
I'm ranting on again.
Thank you for being here today and for sharing, I don't feel so alone.
cb
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DeaconLady,
I can only imagine the stress of the day. I admire you for being able to laugh. You must have a wonderful support system around you. I hope all goes better for you hereafter.
cb
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cb1504,
What kind of snide remarks do the surgeon's office support staff make? That's awful by the way.
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MOTHER WUCKIN BLOODY H3LL!
Now I get a voicemail reminder? I'm over being upset and I'm getting I'm getting pi$ed!
- Snide remarks from my first 2016 visit: "Oh yeah, we have a file on you, you know." Referencing 2014 when I was surgeon shopping and found she was not on my insurance.
- When I rescheduled last Friday due to their mistake: They called to see when my CT scan was scheduled, as I was on the the drive to the CT appointment and clearly she had that tone going on in her voice.
- Today: I've had 3 different "reminders" that I have an appointment on Friday. I always ignore the first, normal one. I did respond immediately (10:54 am) to the 2nd - out of the ordinary reminder to both the doctor and her PA. And just now the 3rd reminder is just pi$ing me off!
Thank God for Xanax because I am gonna really need it on Friday.
You know what? Doctor will be sure to hear by name, about the 2 women in her office that screwed up my CT scan and caused this delay. AFTER we discuss my CT scan and I get a copy on disk to take to the new surgeon.
I was gonna let it slide - but they're making this all about me when they screwed up.
My appointment's not until Friday, I wonder how many "reminders" I'll get tomorrow?
What is my crime that warrants all these reminders? I rescheduled my office visit for last Friday.
Because the soonest I could get the CT scan done was last Friday due to her office not sending the referral in a more timely fashion.
Why visit the surgeon without the test results we were to discuss?
I even got a call late Thursday from the CT scan girl to try to reschedule because they still didn't have approval from insurance. She had to call insurance Friday morning so they could see me Friday noon.
I have otherwise been early to every appointment, rescheduled NOTHING and been WUCKING CHEERFULLY ignoring their attitude at every meeting.
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Anger is finding out by ACCIDENT in September by the radiologist that I had another area to be biopsied that wasn't done as it was supposed to during my lx. Biopsy was finally done last week. Results should be in tomorrow...it's been a week of hell playing the waiting game for something that should have been done last year!!! Like seriously WTF? How did all my DRs not notice it wasn't done...???? How did nobody tell me? Even if this nothing...the mental wreck and the pain of doing a stereotactic biopsy on a tight radiated breast (with implants) is just not even funny. Like F#%K!!!!
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I know JJ,
2014 the machine broke after 1 needle in the healthy breast and the stereoscopic procedure ended. Surgeon operated anyway and here I am 18 months later with a new lump in the same spot as the old lump.
I am right there with you sister, but the attorney told me there was no way to prove damage, nothing to sue about.
Some Miss Thing told me the other day that I was coming from a place of anger because I'm angry that I have cancer. Miss Thing - do not anger me and I will not be coming from a place of anger.
cb
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But JJ,
The attorney also mentioned that the statute of limitations here in AZ for this sort of thing is 2 years from discovery. He urged me to get another legal opinion. Don't let my experience influence your actions.
cb
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JustJean, I think it is inexcusable that your doctor does not see you immediately (the same day or early the next) when you have stage IV cancer for pete's sake!! My PCP puts aside a few appointments each day for last minute sick folks. She will ALWAYS squeeze me in and also did so way before I had any breast cancer issues. That just stinks on every level and smacks of insurance issues to me, but since you are in Canada, I don't know how your system works. Hugs either way. You deserve better than a clinic for whatever illness you are experiencing. ((((Jean))))
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