Fuming

rhondalea · 06-12-2012, 03:38 PM

Maybe it's me. Perhaps the tobacco withdrawal has really done a number on my temper. Then again, perhaps the medical community needs to get on the stick and stop acting as if the only important schedule is its own.

Today was the regular Herceptin infusion, scheduled for 1:30. At 10:25am, my onc's nurse called and asked me to come in a half hour early to see the onc before rather than after, because they needed to get out at 2:30. (My appointment with her was originally scheduled for 2:30.)

I say yes to everything. Always. I told her I would stop at treatment to ask them to order my Herceptin so it would be ready to go when we were done. She told me not to bother--she said she would do it.

I dutifully showed up at the appointed hour. The receptionist told me I wasn't supposed to be there but they were expecting me at treatment. I explained the above. "Oh." (That should've been a clue, eh?)

30 minutes later, I was still waiting. I got up, told the receptionist I was going to treatment and to let them know they could call over for me when they were ready. I did the usual preliminary stuff, including the needle stick, and then I was told to go back for my appointment. I asked the nurse if she had ordered my Herceptin, and at that moment, she thought she was supposed to wait until I'd seen the onc and it had been cleared. I explained to her--nicely--all of the foregoing. She then told me that yes, the onc's nurse had in fact told her to go ahead and order my Herceptin. (So now we know that no matter how implausible the lie, they will tell me anything to cover each other's delicate derrieres.)

So I went back to waiting room and sat for awhile. Finally, someone came for me, and I was put into an exam room. The usual procedure was not followed (wherein the onc's nurse comes in and asks a lot of questions), but shortly thereafter, the onc came in with two students.

At that point, I just wanted to cut to the chase. Each time I go, they ask me how I feel, but it makes no difference if I'm in pain or have fatigue or have the world's worst brain fog because no one offers me anything that might alleviate any of it. If you're not going to fix it, why ask?

So I was terse with her. I was even more terse when she asked me how I was doing with the metformin. It's not her trial. I'd asked her about trials. Repeatedly. And I got exactly zip, zilch, nit, nil and bobkes back from her, so I found one on my own. She doesn't need to know about any side effects I'm having from metformin--she's not going to do anything to help me with them, so I'll save them for the study doctor. Once upon a time (last visit), I sent her a rather lengthy email that detailed everything I wanted to go over at our visit. She didn't read it, but her nurse printed it out for her while we sat there. She joked about how long it must've taken me to write it, but she didn't look at it, and my questions didn't get answered. Then she wants me up on the table so she can examine me. Three times, I said, "the seroma is still there," and she didn't respond at all. (Looks like I'd be stuck with it were it not for the physical therapist (who is also a lymphedema therapist) who thinks she can teach me how to bind it so it will go away.)

I did explain to her that in the rush to get there at the earlier time, I'd left an open nicotine patch on the bed (rather than on my body), and I was worried that the cats might lick it/eat it/die from it.

Well, she was pissed that I was pissed. She wanted to focus on how it wasn't her fault I'd left a nicotine patch on the bed, even though my own emphasis was on "I rushed to accommodate you, and you totally blew me off." I suppose I embarrassed her in front of her students. But I really feel as though I've been condescended to more often than not, that I haven't gotten the answers to questions I've asked, that....

Wow, I'm really not happy, am I? But as I said to her back as I was walking out the door, "I just want September to come so I don't have to do this anymore."

To the credit of CINJ, I do think the actual treatment I've gotten there has been top-of-the-line, so I don't know that I'd have wanted to be treated at another facility. On the other hand, I'll be really hard put to recommend them if someone asks, and if this stupid cancer does come back, I may look elsewhere.

(For the record, I also have nicotine lozenges and a nicotine inhaler, so I wasn't actually suffering from nicotine deprivation at the time my fit of temper occurred. Moreover, the patch is now off my bed and on my leg, and the cats are fine, but I'm still angry at the total lack of professionalism I ran into today.)

NEDenise · 06-12-2012, 03:55 PM

You go girl!!
First...congratulations on all your efforts to banish nicotine from your life! That's no walk in the park. But, it's so vital to do! Imagine how p*^&ed you'd be to have fought off the BC beast...only to succumb to lung cancer one day!!!

And, second...woo hoo! It sounds as though you were polite but firm in making your dissatisfaction known to your oncologist and her staff. They are there to care for you, and provide a service...for which, BTW they are well compensated. You have every right to expect professionalism, and high quality care.

I will be curious to hear whether your next encounter with your care team is more, or less satisfying, as a result of your speaking up for your rights.

And last, but not least...I'm glad the cats are fine.

Well done! I hope speaking up for yourself...and venting to all of us here...has been cleansing for your soul!
Keep being the strong, wise lady you are!
Denise

CoolBreeze · 06-12-2012, 06:09 PM

Congratulations on quitting smoking! I quit 25 years ago and can't believe I was ever a smoker. It's really important to avoid those triggers that make you want a cigarette. For example, I used to sit down, pour coffee, light a cigarette and read the paper, so instead I'd go outside, drink tea - change your routine up when there are specific triggers involved and it's less likely.

I do agree that in some parts of your note you have reason to be irritated. It sounds to me like your doctor is not listening to you at all. Maybe you need to be more forceful. "I have pain X, and I want X pain medication. Will you prescribe it for me?" Instead of saying, "The seroma is still there" which is just a statement, I would say, "What am I supposed to do about this seroma; when will it go away?"

FYI: I routinely wait at least 30 minutes, very often more, for my regularly scheduled appointment. I am there at 3:30 and frequently don't get out until 6:30 - even when it's just Abraxane, my "30 minute chemo."

They are always short of nurses, it seems. But, my oncologist is wonderful, forward-thinking, so I'm not leaving. I love the office staff and the nurses. But, they are busy and it happens. I've given my life over to cancer so I can't worry about that time. Once a week for three years, I"ve gone for chemo and I used to be the kind of patient who got upset and angry if I was kept waiting - but now, I just relax. I bring my iPad so I always have something to do. I know they always run behind so I expect it now.

I don't think you can expect doctors to read long emails and respond - that is what exam time is for. Take the top three concerns and ask and don't stop until you get an answer.

I also think there might be a teensy bit of withdrawal going on but you know what? That is okay. You are doing the right thing and you'll feel better soon. {{{{{hugs}}}}}

KDR · 06-12-2012, 06:36 PM

Rhondalea,
Maybe it's me, but I've found that doctors "act" differently when they bring in students. I have made it a point to let my nurse know when it's cool to bring people in and when it's not. I have a pass to be moody, sometimes I just don't want to share.
I understand what you mean about waiting. There is a line, I think, as to what's acceptable and what's not. When you think that "line" has been crossed, you should contact Patient Advocates, or whatever is the equivalent at your facility.
Good luck in your continued success with offing the cigarettes: one less slave to the The Man.
Karen

BonnieR · 06-13-2012, 11:17 AM

I totally understand your frustration especially since it was them who requested the schedule change. I think we just periodically reach a boiling point and god bless whoever is in the line of fire!
I recently had cataract surgery and had to fill out an evaluation form. The experience was a very good one except for a nurse who was gossiping with another about Facebook postings while in the prep/recovery room where patients could hear. And she kept calling me "Sweetie". These are minor infractions, I guess, but they just annoyed me enough to note them on the survey.
Now I feel a little guilty. And not looking forward to possibly needing more treatment there!!

tricia keegan · 06-14-2012, 01:41 PM

Sorry you had to kick some ass but glad you did as so often these Dr's treat us badly with no comeback!

I just wanted to add that I quit cold turkey six months ago after thirty odd years of thirty a day yikes! I know its not easy and now face trying to shift this extra nine pounds but do feel the health benefits and wish you well

Vicki revised · 06-14-2012, 07:42 PM

Congrats on kicking the tobacco! My mother passed away 7 yrs ago this week from small cell lung cancer. And boy, do I need her now to help me thru this, like she did all the others difficulties in my life. By the same token, I'm in pain knowing my sons will need me when I'm gone.

I had a checkup with my surgeon today, who actually dx me last year. I'm having bad fuzzy brain and a short fuse and when his staff told me my medical history had to be redone/updated I flipped. 6 pages of crap like do I have breast pain...I wanted to write I HAVE NO BREASTS! Am I depressed, anxious, get dizzy, short of breath??? YES YES YES!!! I finally wrote in all caps at top stage 4 breast cancer with mets to liver

Stupid thing is, dr knows all of this, there is a longstanding outside personal relationship--so I filled all ths out for the clerks. All of this is in his records and he has it memorized. He is awesome--staff, not so.

rhondalea · 06-24-2012, 10:03 AM

I had to step away for a bit. I haven't been that angry in longer than I can remember. I also discovered that my trigger for smoking is anger--I smoked an entire pack of cigarettes on Wednesday--which explains why I've cut down so much in the last few years.

I appreciate everyone's comments and the support. But for that, it probably would have been more than a one pack lapse.

This incident is part of a larger picture, and it just focused the irritation I've felt with some of my treatment team over the past year. I haven't decided what to do about that quite yet, but my gut says to finish the Herceptin infusions where I am and then switch treatment centers for any follow-up care. Maybe, maybe not.

I have done a lot of thinking about this particular incident, though, apart from every other irritation I've experienced in the course of my treatment. Let it be said that I always wait patiently, even when the wait is long. I bring something to do, and I keep smiling, because everyone has to wait sometime, and there's no reason why it shouldn't be my turn. Also, in doctor's offices, I make the assumption that the delay is caused by someone who is far sicker than me, so I am hopeful that it means that if I am in need of immediate attention, I will receive it.

But here's my word to the wise for doctors: if you're going to ask a patient to come in early, it is totally disrespectful to then keep that patient waiting past the original appointment time. Also, an appropriate apology would begin with, "I'm sorry *we* (or *I*) kept you waiting" not "I'm sorry *you* feel that way" or, worse, "It's not my fault" (yes, she really said that).

My internist and my endocrinologist always keep me waiting at least an hour. I have never complained, and I have always sympathized with their excessive caseloads when they apologized for the delay (because they always do). Moreover, both of them teach, but neither has ever failed to ask if it's okay to bring the students in at that visit, even though they know I will say yes (because I always do).

So, as I said, I did appreciate the insights and support, and I'm sorry I left this thread to hang. I'll let you know how it all turns out eventually (when I finally take action), but for right now, it's probably more urgent that I avoid the tobacco cravings than vent my spleen about bad behavior in the medical community.

NEDenise · 06-24-2012, 04:49 PM

Well said, my friend! As usual. You always seem to operate on such an even keel. If you were upset...I trust there was sufficient provocation!
So glad you're "back on the smoke-free wagon"!
Stay strong!
Denise

swimangel72 · 06-24-2012, 07:21 PM

I haven't been on this board for quite a while so excuse me if it appears I'm just barging in. Rhonda your complaints sound so similar to mine when I was getting Herceptin. I want to tell you it's perfectly OK (and normal) to switch doctors! I'm on my third oncologist! The first was a lovely man but his nurses were overworked and insensitive. Realizing I had to endure their attitudes (as well as the Herceptin) for a year forced me to find another oncologist. He was willing to continue the same treatments - and I stuck out the year with him because I loved the infusion nurses. However, soon enough I realized this doctor was more concerned about making money than answering my questions - after my last Herceptin infusion, he wanted me to continue to see him every three weeks, which my research showed was totally unnecessary. I got all my paperwork from his office then switched to the loveliest, caring oncologist (recommended by a friend at work) - and I've been with him since.

It took a lot of work (and courage) for me to switch away from the first oncologist - but believe it or not, it was the insurance company nurse (who would call me once a month) who encouraged me. She said she could tell I was getting more and more unhappy and I deserved to find an oncologist with better nurses. So I hope my story encourages you to find another oncologist who will continue your treatments but provide you with the concern, care and follow-up that you deserve! After all is said and done, it's not the infusions or meds that make an oncology office special - it's the PEOPLE!

suzan w · 06-26-2012, 11:16 AM

Grrrrr...!!! Good for you for standing your ground. Another pet peeve...dealing with insurance companies over the phone...when we feel like s#@*, and then there is that gawd-awful hold zone music...

BonnieR · 06-26-2012, 12:53 PM

Maybe we need to keep this thread active as a place to "vent"!!
Keep the faith everyone.

fauxgypsy · 06-28-2012, 09:07 PM

I take it that the cat was okay. We all need to vent. I also think that we can decide not to have students in there. I have had my share of annoying doctors recently. I was in the hospital for five days and saw 5 hospitalists. I hate that system. I think they were worse than the illness (not cancer, this time). Finally made them get my gastroenterologist in. The last day, one of the hospitalists came in (first and only time I saw her) and said there was nothing wrong with me. I had just spoken with the GI guy and I knew that there was something wrong (gastritis, esophagitis, duodenitis and although we didn't know it until later I was having problems with Systemic mastocytosis). Called her on it. She said that if I just let her finish... , I told her that I would have if she hadn't told me there was nothing wrong with me. I don't think MD should spell rude. She started telling me what I should do when I got home and I told her that I thought I would let my gastroenterologist handle that.