Reply to Stage IV Metastatic Breast Cancer Diagnosis

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[quote=Anonymous]I have breast cancer and suggest you join the facebook metastatic breast cancer groups. I am not a social media person, but these groups help you learn the lingo quickly. One day scrolling through and you will understand what info you need from the reports, etc. I learn about trials from the facebook group.  And a few words of advice - please don't make this about you. The genetic testing helps her doctors determine the best treatment for her, Yes, it will be helpful to you and your kids, but right now she has breast cancer, you don't. Again, don't make it about you and your children. Help her with what she wants help with - if that's understanding the medical part, jump in. Hospitals now allow one visitor (although they always allowed one companion if you needed it). Drive her to appointments, drop her off, park the car, and go in with your notebook. Write down everything that is said, ask who your sister follows up with if she has questions after the appointment. Johns Hopkins has triage nurses for oncology that are the best, I find them a lifeline.  Get to every appointment fifteen minutes early.

Here's what I got that was helpful - soft blankets, lotions (I have a lot of chemo), meals.

Here's what not helpful - breast cancer books, another journal, people telling me I look fine/good.

When she cries, listen. When's she mad, listen and hug her. Don't judge what she eats or drinks. She needs to comfort herself, let her tell you how crappy she feels. Just be a presence and take walks.

Good luck. It's hard to be part of a caregiving team, so don't underestimate how much work this will be.   [/quote]

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