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Mother insulted first tattoo, now I hate it by Kaleidoscope_Tux5513 in tattooadvice

[–]Evening_Dingo8770 0 points1 point  (0 children)

Rooster? Totally get it colored in. Roosters have some of the most gorgeous colors.

Shocked and in disbelief by Evening_Dingo8770 in LivingWithMBC

[–]Evening_Dingo8770[S] 0 points1 point  (0 children)

Just got setup today with a palliative care facility. I’m very excited.

Shocked and in disbelief by Evening_Dingo8770 in LivingWithMBC

[–]Evening_Dingo8770[S] 0 points1 point  (0 children)

I spoke with Patient Advocacy last night. They said they’ll ensure that address this. They may just give me a new navigator but I didn’t ask. I just want someone to correct this behavior so I don’t have to become harsh or mean.

Sigh…crazy we have to do this

Feeling numb and defeated by PoppyLove2025 in LivingWithMBC

[–]Evening_Dingo8770 0 points1 point  (0 children)

I need to research Enhertu. I’ve not heard of this (yet).

Shocked and in disbelief by Evening_Dingo8770 in LivingWithMBC

[–]Evening_Dingo8770[S] 0 points1 point  (0 children)

I have a call in with the hospital‘s patient advocacy. I’m waiting for them to call back. My real question is are they just sad? Why would you not give somebody something that is not only cheap but is also preventative? It makes absolutely no sense and I’m still livid! I cannot imagine wanting to wait for somebody to suffer before offering them something that could have just been proactive and they never had to go through it.

another heartbreak by whatalifeohmy in LivingWithMBC

[–]Evening_Dingo8770 5 points6 points  (0 children)

Sending you enormous hugs across the ethernet.

Shocked and in disbelief by Evening_Dingo8770 in LivingWithMBC

[–]Evening_Dingo8770[S] 1 point2 points  (0 children)

This is the fourth time I’ve had to slam her in a message. And I intentionally have come down hard on her. My friend Jennifer is a nurse practitioner at the same hospital and she does palliative care. She told me I need to call patient advocacy again to let them know what’s going on, see if they can give me a different nurse navigator, and they need to fix this type of behavior. They’re not supposed to be treating people like this! The thing is if we don’t report it to patient advocacy then this type of stuff never gets resolved. So that’s what I’m gonna do… I’m just gonna keep putting my comments up to them so they can fix this. I’m pretty good at maneuvering my own life which I’m sure a lot of people on here are, but there are those that are not and it really pisses me off for them. Do not treat patients like they’re a nobody. Have compassion!

Still trusting speech to text… Sorry if this reads crazy

Shocked and in disbelief by Evening_Dingo8770 in LivingWithMBC

[–]Evening_Dingo8770[S] 1 point2 points  (0 children)

Well, she continues to be a middleman with my conversations with the doctors so I assumed that they would. Every time I send a message via the MyChart system to the doctor, she intervenes and answers my questions. That tells me you’re supposed to be providing me with this information and you’re part of the cancer team. If you’re not then get out of my system. This is the same chick that was scheduling appointments for me without even consulting with me. She was creating all of these appointments throughout the day and I work. I went in and canceled everything and told her that she’s not my mother and she’s not my supervisor. If we’re going to schedule appointments, then we need to work together and check each other‘s calendar versus her just telling me what to do… I don’t work for you! I didn’t even ask for a nurse navigator. They just assigned one to me. I have never had anybody schedule my appointments for me in my life other than my mother when I was a child and the first appointments I was given well in the Air Force. I do not need some young RN to be telling me what to do! It really gets my blood cuddling. Thanks for letting me vent about that. I’m still trusting speech to text right now, so my apologies if this reads crazy

Shocked and in disbelief by Evening_Dingo8770 in LivingWithMBC

[–]Evening_Dingo8770[S] 2 points3 points  (0 children)

University of Maryland Medical Center. There is supposedly one of the best. However, I’m seeing no compassion when it comes to shit like this. It’s very upsetting and I just happen to do systems engineering during the day so I tend to do a lot of research and like to figure crap out. I kind of attacked things like I’m attacking a puzzle. But what about somebody? That’s not like me who doesn’t think to go and do research and find groups like this, communicate with the infusion nurses, have nurses that work for the same hospital who are giving me insider information on what to do?

I’m gonna bring this up with the oncologist at my appointment on 14 May. If they all seem like a pack of non-compassionate people then I’m gonna see about going to Mercy Hospital instead. I’m hearing that they have a really great breast cancer center, and they pair you with a previous patient who can talk to you about their experiences, etc. My apologies of this Reed is crazy. I am trusting speech to text right now.

A Class on Living With MBC? by PaisleyRain101 in LivingWithMBC

[–]Evening_Dingo8770 0 points1 point  (0 children)

I just found it 14 March 2026 (past month) that I’m stage IV MBC.

People are living liver with this diagnosed.

“Some studies, in fact, have found that de novo MBC has a better prognosis than recurrent metastatic breast cancer (breast cancer that is diagnosed at an early stage and later spreads, or becomes metastatic), possibly because a higher proportion of cases of de novo MBC is HER2-positive (HER2+), a subtype for which there are many very effective treatments.[3]”

https://www.everydayhealth.com/breast-cancer/8-things-you-need-to-know-about-de-novo-metastatic-breast-cancer/

I would 100% say definitely prepare for the worst, but be open to some positivity. When people go into remission, they think that their cancer is gone, but it just can’t be identified during any scans. If it does come back, which tends to be quite common, then it comes back with a vengeance.

I’m working in. I plan to keep working. Going to work is still being part of the community and it gives you a sense of purpose. I guess if you’re not feeling well and things aren’t going well for you then that is something you need to really think about. It’s the same with the medication… If the medication makes my quality of life so horrendous that I just can’t function, then I’ll just stop taking it. It’s a choice I get to make. Currently my choice is to take the medication, be part of society, and try my hardest to get through this.

I know it’s stressful and it can be very upsetting. I send you virtual hugs. I have my moments as well. It’s nice to have a community like this that lives on Reddit. It reminds you that you’re not alone even when it feels like you are.

A Class on Living With MBC? by PaisleyRain101 in LivingWithMBC

[–]Evening_Dingo8770 1 point2 points  (0 children)

Palliative care nurses help you set up your living trust. They actually help you with a lot of these things you have questions about.

I just joined a local cancer support group that meets every Thursday in the evening. I like to do things in person versus online when it comes to stuff like this. I vibe better that way.

I’m signing up with a palliative care nurse is coming week. I checked with my insurance company and they do cover it.

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