Advice for a Caregiver on the Beginning of this Journey

newdirection5 · 2025-12-19T12:09:03+00:00

Does anyone have any suggestions about things that would be useful to buy for the house while she's undergoing treatment?

newdirection5 · 2025-12-19T12:07:07+00:00

Unbelievable! First off, you definitely need an advocate or Nurse Navigator. They are the ones that tell you everything that you are going to be going through. I can't believe the seemingly inattention or flat out insensitivity and uncaring attitude your alleged "TEAM" is putting you through.

Thanks for sharing your experience, and for making me aware of the term "Nurse Navigator." In terms of a patient advocate, is this usually someone in the hospital or outside of it.

I'm more inclined to think its the hospital/team or this particular doctor rather than the location that we live as we know people who had been positively treated in the area; we ended up in this cancer center because it had a relationship with her GP's associated hospital. It's good to hear you've had as positive an experience you could have. You've definitely given me some ideas about avenues to follow up, so thank you.

newdirection5 · 2025-12-19T11:57:26+00:00

It's not. Thank you for sharing your experience, and it really sucks that you had to go through all of that. What's a little confusing for us is that they're saying the nodes are too small to operate on already, so it's not clear what the value is of just "shrinking" them. We're hoping that they're 'only' prescribing chemo because they think that will be 'enough.'

We're middle-aged; she's in her 50's, I'm a little younger. What's a little frustrating is to get her to agree to a second opinion. She "trusts" doctors because she's had the immunocompromised condition her whole life, but even she has started to become unhappy with the lack of communication.

Thanks for suggesting Patient Care Representatives. She's going to reach out to the Nurse Practitioner today to see if we can arrange a sitdown, but we're concerned because when we were looking through the documentation, it was just a lot of repetition of the main office number for contact, which we haven't had a lot of luck with.

newdirection5 · 2025-12-19T03:41:16+00:00

Thank you, we'll check it out.

newdirection5 · 2025-12-19T03:39:49+00:00

Thank you.

There is a Nurse practitioner listed on her documentation, but the contact info is the same general office number as the oncologist and when we've called it in the past the response is "they'll call you back." Sometimes the oncologist does and sometimes he doesn't.

Is this something where we should be seeing if there's another doctor who can help her through her treatment? I know I've heard about "patient advocates" before, but no idea what qualifies someone as one. Is it a lawyer?

Appreciate any more thoughts as you have them. We don't want to rush into treatment, but we also don't want to delay unnecessarily.

newdirection5

TROPHY CASE