New palliative care doctor not helpful: How to find help & hope?

Posted by anto1nette @anto1nette, Jun 2 6:07am

It was not a lifting experience to meet with a new Dr. He did more than ask about side affects. He told my husband that he doubted there would be any surgery after the chemo. I asked what stage was the pancreatic cancer was and he said 2B. It was a blow to my husband who has been so upbeat and progressive to this point.
We are still hoping for a different evaluation from the Mayo Clinic. No cure but more time.

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Hello @anto1nette. I am so sorry. Being the caregiver in these types of situations is so challenging because we are not able to make things better or change what is. Have you scheduled the evaluation at Mayo yet? If so, when is that?

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@amandajro

Hello @anto1nette. I am so sorry. Being the caregiver in these types of situations is so challenging because we are not able to make things better or change what is. Have you scheduled the evaluation at Mayo yet? If so, when is that?

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Yes. Towards the end of July.
He has had only one side affect from the chemo. He’s cold. That we can handle.

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@anto1nette

Yes. Towards the end of July.
He has had only one side affect from the chemo. He’s cold. That we can handle.

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@anto1nette do you feel prepared for what you want to ask and learn in July? What type of topics could members potentially provide some support to you?

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Good morning, @anto1nette I was sorry to read of your disappointing doctor's visit. During my wife's journey with cancer, we often encountered highly differing styles regarding how her doctors spoke about her condition, future, options, etc. Some definitely lacked any semblance of decent bedside manners! Not for everyone, I'm sure but what we did come to appreciate were those doctors who gave it to us straight. That said, it always took us some time to absorb and process bad news when we'd get it.

In my wife's case, she had one surgery, but due to complications and what they encountered with her tumor, we were told right away future surgeries were not going to add to her quality of life. Hard to hear, but it did help us be more focused and urgent in our future decision-making.

Wishing you well with your upcoming appointment at Mayo!

Strength, Courage, & Peace

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The Dr that did the endoscopy ultrasound told me don’t even bother with chemotherapy. Hmm
Won’t be seeing him again.

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@amandajro

@anto1nette do you feel prepared for what you want to ask and learn in July? What type of topics could members potentially provide some support to you?

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Maybe how to be more forward with all the Dr visits. Some times you feel overwhelmed with what is being told you. You can’t absorb what is being told to you in a 15 minute visit. We have a printout of the next visits. BUT it’s not listed what THAT Dr is for.

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@anto1nette

Maybe how to be more forward with all the Dr visits. Some times you feel overwhelmed with what is being told you. You can’t absorb what is being told to you in a 15 minute visit. We have a printout of the next visits. BUT it’s not listed what THAT Dr is for.

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Oh how frustrating – things seem to fly by during visits, we forget what we meant to ask, or maybe the doctor uses jargon.
Have you considered bringing an extra person along, who has the checklist of your questions, and can record what the doc says? Or maybe record the visit on your phone so you can refer to it later?
Also, if there is a "patient portal" usually you can ask questions or get clarifications within a few days of your visit without having/paying for another visit.
Sue

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@sueinmn

Oh how frustrating – things seem to fly by during visits, we forget what we meant to ask, or maybe the doctor uses jargon.
Have you considered bringing an extra person along, who has the checklist of your questions, and can record what the doc says? Or maybe record the visit on your phone so you can refer to it later?
Also, if there is a "patient portal" usually you can ask questions or get clarifications within a few days of your visit without having/paying for another visit.
Sue

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Have you done that?

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@anto1nette

Have you done that?

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Yes to bringing someone along. Even during Covid, I had to insist when my husband was ill so that we got answers when he wasn't able to follow the conversation.
As to asking the doc later, we routinely do this, especially when questions arise after lab results come in. Last week I contacted my primary because I having issues with bronchiectasis, which I thought was under control, but it flared a few days later.
Also, when I got blood test results, where they were sent to my primary & the cardiologist. Cardio recommended a path I didn't want to follow (my primary knew my wishes.) I sent a message to my primary to ask whether my decision was still a good one when the new lab results were considered.
Today, my husband sent a message to his primary, saying the previous meds stopped working, and he got a call to clarify the issue, then another telling him to go pick up a new prescription.
These are effective ways to get care without waiting weeks for a new appointment.
Sue

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@anto1nette, I thought I would check in. How are you and your husband doing?

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Not a good day today. He was going to help empty a storage unit for the American legion. Never got out of the car. Didn’t feel well and went home. Left me there not a problem. Got home and he couldn’t get out of the car. Too dizzy. Got him in the house and he slept in the chair for over 6 hrs. Then didn’t want supper. He ate a tiny bit and went to bed. Said his knees hurt really bad. That’s new.
The other development is his Dr here said he didn’t see surgery in the future. Another blow.

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@anto1nette

Not a good day today. He was going to help empty a storage unit for the American legion. Never got out of the car. Didn’t feel well and went home. Left me there not a problem. Got home and he couldn’t get out of the car. Too dizzy. Got him in the house and he slept in the chair for over 6 hrs. Then didn’t want supper. He ate a tiny bit and went to bed. Said his knees hurt really bad. That’s new.
The other development is his Dr here said he didn’t see surgery in the future. Another blow.

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That's a very rough day, Antoinette. I hope you were able to get some rest while he was resting. Sending you a gentle hug.

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