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Bad treatment experience


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I copied a rant I'd sent to Bruce in an email. I've said all these things piecemeal here and there but never all in one stream. I'm hoping it will help me let it go. It might work for you too.

I had my appointment with the onc at the new Cancer Center here in KW today. It's adjacent to the hospital and appears to be an appropriate facility. The one I've been going to is god awful--horrific parking conditions that stress me to the max, a waiting room that overflows from time to time, a chemo room with wall to wall chairs (all 5 of them). Can't go to the BR without being disconnected from chemo. No room to roll the pole out. That on top of a corporate policy that had me upchucking because they didn't call me to clear my ins (no pre-approval required anyway and I've had many chemos there and they always got paid) until an hr before my lab apptment. Oh, and they apparently forgot to schedule the routine Neulasta shot after taxotere. Five or six days after that infusion, I wound up in the hospital for a week with multiple infections including pneumonia and requiring blood transfusions, all due to tanked blood counts--red and white. Can't seem to get past this.

Have you had your own cancer nighmare experience related to inadequacy or incompetency in treatment? If so, I'd like to hear it. Not only does misery love company but the venting might help with the letting go.

Judy in KW

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I can't join in the rant yet. Just give it time though! So far my treatments have been handled with great care. I've been a huge advocate for myself, and would not put up with any bull-crap! I've been through so much with family, that I am ready for any stuff they try to put me through that is unnecessary.

I will say that when I was in the hospital for 15 days after the surgery, I was thankful that my husband was there to make sure they did my meds correctly. Twice in 15 days they tried to give me my morning meds twice. My husband kept track of that and challenged them and they found that the previous nurse failed to log in to show that she gave me meds.

Overall, I've been very pleased with my medical care team, and hope that continues!

We shall see.

Judy in MI

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The easy one - having an oncologist look at my scan and tell me I showed no evidence of disease, then when I asked a question and he looked again, he realized it was not the most recent scan - and the new one showed recurrence. Oops. Well, he apologized, but it was hard to have a lot of confidence in him.

Or there was the oncologist that wrote the wrong calculations for my chemo - the nurse caught it since it was pretty far off from the one 3 weeks prior and weight based. "You didn't gain 20 pounds since we last saw you did you?" Same onc. wrote the wrong weight down the following time, but had the right calculations, so the nurse just adjusted that chart a bit. Third time, the post infusion orders were wrong in a couple of ways and it took almost a week to straighten them out, so my shots were a week late. I've decided I don't want her for primary oncologist, or my substitute one either, even though she was pleasant in person.

But my favorite story was from my post surgery time in the hospital. There was this old nurse on duty and a young one in training. The old one was insisting on giving me a shot (or was it a pill) for blood pressure, high blood pressure. Since I typically have very good to low blood pressure, I was surprised by that. Also since my blood pressure had been low for a couple of days post surgery and they had declined to give me this medicine post surgery. I told her no, and that I needed to hear it from my doctor before she could administer the medicine. He backed me up!

The high blood pressure? It came from her sending the training nurse in, unsupervised, to take blood, and she messed up and I was shooting blood out all over the room until another nurse came by the doorway and did something fast to stop the fountain. Training nurse was so upset I felt sorry for her, but when she came in to do another round, I asked that she practice on someone else.

Upshot? We called for the nursing supervisor (and got half the hospital supervisors) and old nurse was banned from my room for the rest of my stay. I got some really good nurses from then on, and wonderful personal care assistants. And I felt like I had a teeny tiny bit of control over what was happening. Priceless.

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Judy and Stephanie, you both brought up a good point that all of us need to remember. You need to be your own best advocate and, if possible, have someone looking over your shoulder should you have to be hospitalized. Some things are beyond our control but most times we can catch mistakes if we are alert. I could not have changed the CC's physical facility but I could have insisted on the Neulasta shot had I done my homework and been certain it was routine with Taxotere. I had questioned them not doing labs again before it at MDA but thought it could have been routine just the first one. Truth is, I let my usual vigilance lapse because it was Friday and I was focused on getting to a family funeral in NJ. Now my daughter tells me they could have written and given me a script for it. Live and learn and stay alert to your situation.

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Unbelievable stories-makes me realize how fortunate I have been with my treatment and providers. It's surely difficult enough to contend with cancer and the treatment-we don't need providers messing up right and left on us.


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Earl, for insurance purposes, had to have his brain MRI's at Fox Chase Cancer Center. For awhile we would go back down to Univ of Penn to see his neuro surgeon to read the films.

I finally asked if they couldn't be read at Fox Chase. Absolutely, they said. Next appt. after next MRI, I asked his onc if he had the results of the scan. He said he would have to check and would come back if there was a problem. Never came back - no problem - right. WRONG.

A week later Earl was demonstrating some wierd stuff. Called the arrogant you know what. OOPS, said he, there is a big problem.

I don't think it made a difference in Earl's disease progression, but it sure did in our confidence level.

I could go on about other incidents with this s o ?, but I just raise my own blood pressure. I saw him a few years ago in a restaurant and he was still as arrogant. He is no longer with Fox Chase, he is now at Penn.

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