Stage IV UTUC / EV-Pembro / Nephroureterectomy: Advice For Caregivers?

Hi everyone,

My otherwise vibrant and independent 80 year old mother was recently diagnosed with Stage IV (cTX, cN2, cM0) urothelial carcinoma of the left renal pelvis and ureter.

Her treatment plan is four cycles of EV - pembro, followed by a nephroureterectomy. We are approaching the end of her first EV - pembro cycle. Side effects so far have been manageable: fatigue, taste changes, sore mouth, some itching in the upper back but I know this can change day-to-day, and cycle-to-cycle.

Although my mother was living in the rural US northeast (where I grew up) when we initially received the diagnosis, I quickly sorted out an oncologist who specializes in UTUC at a leading academic institution / NCI-Designated Comprehensive Cancer Center that happens to be 10 minutes from my house (on the west coast). So my mother has temporarily moved in with us while being treated there. We are very fortunate to have both the space (spare bedroom) and time (coincidentally, I semi-retired a year ago) to properly support her.

For those who've been on this kind of journey, what do you wish your caregivers knew in terms of how best to support you? What specifically did your caregivers do that you found particularly helpful? What was NOT helpful, even if it was well-meaning? If being an effective advocate was part of how they supported you, what made them effective?

Thank you, in advance!