How to Get What You Need, Part 2

I've been in cancer treatment for a long time, and when my long-time oncologist moved to Arizona and I had to look around for a new doctor, one of the most important issues for me was that I would have the same nurse every time I went in for treatment. (Except when she's out sick or on vacation, of course.)

This helps me feel safe in the treatment center, and also helps prevent mistakes.

Once I chose a new doctor, I had to change cancer centers, but my new doctor told me I could choose a regular nurse to give me my treatment. But it turned out not to be that easy. The treatment center balked at my request.

After discussing this problem with my doctor a couple of times, I experienced the Afternoon From Hell at the treatment center.

Here is the e-mail I sent my doctor afterward:

The first problem:
Zometa.

The nurse told me I was scheduled to get zometa. I told her I had gotten it the last time I was in, and asked her to check the chart and also call your office to confirm that I was supposed to get it every six weeks, not every three.

She checked the chart, and I had gotten zometa three weeks before. In fact, I had gotten it twice in a row, which is probably why I had the severe bone pain a few weeks ago that I told you about.

She called your office, and I overheard the conversation, but all she did was tell whomever answered that I said I wasn't supposed to get zometa that day. She did not ask them to check with you, and I don't believe they did.

So my first question is: How often AM I supposed to receive zometa? Dr. L had me getting it every six weeks, and I assumed that we were continuing with that schedule.

Second problem:
My nurse. We've talked about why I need to have the same nurse each time I go in for treatment, and I believe that you requested that Moire handle my treatment. Moire was there, but the treatment center did not assign me to her.

I can understand that the treatment center feels it makes their job more difficult to honor requests like this, but I would appreciate it if you would speak to them directly and explain that you want me to have the same nurse every time I come in, unless that nurse is not working that day.

This is a medical necessity for me. My anxiety is going through the roof when I am in for treatment. When I have the same nurse, and we have a chance to develop a relationship, then I feel safe and can relax during treatment.

Third problem:
The treatment center was extremely busy, and the nurses were run off their feet and harried. Every chair was taken, and I waited a long time before going back for treatment and then an extremely long time in the chair.

Please suggest a time that would be less busy. Again, this kind of situation makes me very anxious, and it leads to mistakes. Would early Thursday morning be a better time for me to come in? I am perfectly willing to do that.

The time thing: Last time, the person who scheduled me said she could only get me in to see you at 12:40 and in the treatment center at 3, which meant a long wait in between. She did suggest that I go to the treatment center early, in the hopes that they could get me back earlier if I was there.

So I sat and waited in the waiting room at the treatment center for almost two hours after checking in, and did not go back until 3. Then, the pharmacy somehow lost my orders and did not mix up my drugs, so I sat in the chair for another hour before we actually started the drugs.

I am still not sure that the nurses did the double-check on both of my drugs, I believe they only did the first one, the Herceptin.

Then, when my nurse started the second drug, Avastin, which runs for half an hour, she mistakenly did not switch the pump over from the saline, so I sat and received saline for half an hour. She didn't realize her mistake until the pump beeped, so I had to sit there for another half an hour to get the Avastin. She felt really badly, and I wasn't mad at her--it was a result of how busy everyone was.

Total wasted time: 3 1/2 hours.

I was completely wrung out by the end of the day.

SUMMARY:
--Please confirm my treatment schedule for zometa, and put it in my chart.
--Please discuss my needs with the treatment center. I don't care so much which nurse I get, although I really like Moire, but I need the same nurse every time.
--Please suggest a calmer time for me to come in for treatment and have my next couple of treatment appointments made at that time. Early Thursday would work best for me of the three days you are there, but I am also willing to come in Friday afternoons.

I will call you a bit later to discuss all of this, but I thought it was easier to put it in writing since there is a lot of info here. '

Thanks. I really like having you as my doctor, but I cannot deal with the situation in the treatment center. It is out of control.

Jeanne

My doctor--who I really like--discussed my concerns with the person who is in charge of the treatment center, and then we talked about it.

I then had a very cordial phone conversation with the head of the treatment center, and she offered to have my care handled by a team of two or three nurses. I repeated my request for having one nurse assigned to me, unless that nurse was not working on the day I went in. She agreed.

I also decided to go in first thing in the morning, when things will not be so harried, and to take my iPod with me to drown out other people's conversations. This was an issue I didn't bring up with my doctor, but overhearing other people's stressed and anxious conversations increases my own anxiety. So I need the buffer of the iPod.

And on the question of making sure the double-check is done on my drugs, I am taking the advice of my friend Jill, who also has metastatic breast cancer, and I will ask to see the IV bags before they are hung and will check the drug names and doses myself.

So we'll see how things go tomorrow, when I am in for treatment again, at 8 a.m. It will be an adjustment, as I usually sleep till 9 these days, but worth it if I can go in when things are calm and the nurses are not run off their feet.

Read more:

Medical Mistakes—They Will Happen

Chemotherapy Errors

@ Jeanne Sather 2007.

Comments

[jeanne]

Friday morning--Well, things went well in the treatment center yesterday, although I didn't get the nurse I had requested. But it turns out she doesn't come in until 10, and I went in at 8.

She did stop by to say hi when she came in.

Going in early is clearly key to a calm experience. I got a private room, and a great nurse who had time to chat, and two nurses did the safety check with a certain amount of theater--I suspect that they had been told that I complained about this.

But do I care? Nope.

[jeanne]

Rereading this months later, I feel like I need to add an update. This doctor did not come through for me, in fact, she asked me to find another doctor (have you ever been FIRED by your doctor? It was a first for me).

So, I looked around and found a doctor I could work with, at a different cancer center. I don't know yet how treatment will go at that new center, because I've been on a break, but believe me I will speak up if things aren't right.

I still can't believe this--they gave me one drug on the wrong schedule, and at least twice did not double-check my chemo bags before hanging them! And when I complained, I was the problem.

Let me repeat myself: People die from little mistakes like these.