Linda Morales66 said:Dear Angela Wright,
Mom had her surgery today, and she handled it well. Dad saw her in the hallway
when they were moving her to her room and they shared a quick moment. The nurses let him stay with her in the room for just a very short time... she was doing okay, totally alert. The nurse told Dad to come back tomorrow after rounds, and then he can talk to the doctor managing "her case."
We all felt such a massive weight lift off our shoulders once the surgery was over; we’ve been so incredibly tense (even my little one was kicking around in my womb).
First off, I want to thank you for every single word you've written here. I truly value it because you stay grounded, and at the same time, I admire your patience and the compassion you show to all of us. I have to admit, I’ve never really looked into these kinds of topics on forums or sought out this kind of information before. We didn't exactly have "reason" to—to put it bluntly. The truth is, it's only when your whole world gets turned upside down that you actually start paying attention and becoming aware of these tragic stories. Especially since this is the first time cancer has hit our family (not even in my husband's side), so we are being forced, quite suddenly, into the middle of this entire agony of this disgusting, cursed disease... so—even though we realize Mom's condition—we are trying our best to wrap our heads around these medical "phrases" and terms, searching for any similar stories that might give us a shred of hope that everything will turn out alright.
When you wrote "terminal stage" and "palliative care"—believe me, I Googled exactly what those meant. Maybe it sounds stupid or whatever (kind of ridiculous?), but it completely blindsided us. I think it's only now that we're all slowly accepting that the disease has spread so much that there really isn't a cure. That's why, on one hand, I'm glad the doctor I spoke with on the phone gave us the reality of the situation (I hope you understand me speaking like this)... I haven't stopped hoping, but still...
By the way, those patches—Dad finally managed to read which ones they are (Matrifen 50p)... she had two of them a few days ago.
I have a few more questions that might sound silly. It isn't clear to me—if a patient is in that final stage—how is it possible for one day they are perfectly fine (alert, talking), and the next day there's a total shift? For instance, Mom has been her "old self" for two days now, just like she was before she ever ended up in the hospital. Dad is very attached to her, and I'm worried he thinks she's getting better (not that I mean she's cured) rather than... well, like everything is under control (I don't know how else to say it). How should we approach him regarding this?
And one more thing... I read the previous post... Mom had radiation scheduled for August 2nd, but they postponed it because of this surgery. Given that she has metastases everywhere, how does it look—won't it be too late for her by the time the first radiation starts? (Apparently, physical therapy is planned first to get her back on her feet). What do you think? Should we push the doctors? (Even though I know they don't like people "meddling" in their business). I just want her to fight, and I want us to fight right alongside her!
Again, I can't provide specific medical records or anything like that because Mom is in the hospital full-time... (Dad just mentioned he saw her file had four pages of tiny print covering her history and diagnosis...)
Thanks so much
It’s hard to say exactly how things will unfold for her, but you can expect anything at this point. Since the tumors are in the liver, as the bilirubin levels rise, her consciousness will likely fluctuate or decline. On the other hand, some people stay lucid until the very end. I honestly don't know which of those two scenarios is the lesser of two evils. Perhaps the worst evil of all was what my own mother went through with her brain tumor—where for a solid year, we couldn't gauge her condition at all because she couldn't speak, couldn't move, couldn't signal anything to us... maybe that's the absolute worst. I think it's necessary to be calm and honest with Dad; a person has to face it and find a way to accept it. Still, it might be a relief for him that she'll be placed in a facility where he won't have to witness every single detail firsthand, even if he's there by her side. The most important thing is that she isn't in pain, that she stays clean, comfortable, fed, and hydrated, and above all, that she feels loved and knows you are right there with her, making sure everything is okay.
Regarding radiation, in your mother's case—given her overall condition—it would have been palliative, meaning
the goal would just be managing symptoms and improving her quality of life. Instead, they opted for surgery to physically remove the source of her discomfort, which is actually the superior move, and honestly, it’s great that she advocated for herself. When we talk about curative radiation, the intent is different:
it's meant to actually cure the disease. In this situation, the metastases are sitting right near the primary tumor in the lymph nodes, so moving fast is critical to shrinking that mass and making surgery a viable option.
@Lisa Ward52/">@
@Lisa Ward52
It would be the ideal scenario if they could just surgically excise everything at once. From there, you'd follow up with radiation and potentially chemo depending on the stage and severity. Summer is hands down the worst time to get hit with a cancer diagnosis 🙄