Oh wait let me label the old it has started but I'm labeling the one that we just did
is correct the title later but my brain just gave it something. Okay. Well,
okay, so this is Charis I am here with Tinu in Texas and you asked me to share my perspective of how you're doing.
Yep.
So I've This is my third day visiting you. I've come over each day and the first day I was very scared for you and thought that you were like actively dying as in it's gonna happen really soon.
Yeah. And I immediately noticed that you had like no short term memory.
You needed you could benefit from medication management.
And you were in pain that you weren't aware of. Yeah.
I was also really concerned that like you were moving around a lot you could not get comfortable Sure.
You are on really high oxygen and your heart. Your blood pressure and your heart rate. Were still just going up constantly. Yeah.
And you I changed your sheets that day and you could barely make it to your recliner. That's like three feet away. Yeah, that's true.
And so I was thinking, Okay, this is so much worse than what she's sharing online.
I was hooked up to the oxygen to when during the whole entire time then you were here. And, um, I don't have those days, five days a week, but I have them two days a week.
So that is like my condition. I guess what is that? 28% of the time 30% Time. Okay.
That concerns me a lot. And then in contrast Yesterday, you were better in a lot of ways like you. You didn't have to spend long periods of time not talking and like having me remind you to not talk
and you did need oxygen but you you were more comfortable and that's because you had effective pain management the night before.
Yeah. Which leads me to think that if you had adequate support, which you've kept saying like if you have access to treatment, you have room to improve. Yes.
And so that I think that's what you're shooting for when you're fundraising for yourself is to access pain management, access all the treatments you need
because it was night and day difference of me noticing. Like you are sharing I can actually take a deep breath and it doesn't hurt. Right.
And you didn't even know before how much it was hurting. Right. So you got the relief. So that's that's kind of what I noticed. I'll keep it short. But yeah.
I think that your visit is going to extend my life like I think that it's been life saving
not only for you to be here doing the healing things and more that my mother would do if she was here,
but also you were able to not only observe, but process and explain here's some of the stuff that you need.
I knew that I needed stuff. But I can only really go by what does my career nurse advocate say what does my oncologist day? I don't have like, like I'm not really good at going outside myself and observing what else you know is out there for me to access that would make the situation better.
And so yeah, just for the record, I was very, very resistant to this trip.
On an emotional level because of the added thinking which causes me stress and just think things normal people don't get stressed about I get stressed about
because I don't have the capacity anymore to just be normal. And so those actions were stressing me so much I was like this is affecting how I feel and how I am. Is it worth it?
To have somebody to witness when this cause it causes me this amount of stress and distress is making me physically worse
but I felt like also instinctively under that that I should not be fighting this. I need to have at least one person come here and see how I'm doing that was not my (biological) family.
That's not taking short visits with me like my friend Brooke or my friend Wes who also lives nearby.
It needs to be somebody who is— who understands, who will understand what is happening and be able to report back in case something does happen.
And I really appreciate that. Thank you so much. I love you.
I love you. You're welcome. Yes. So I think I want to finish by saying just in summary like you are worse than you say you are online.
But if you have access to pain management and other things, it doesn't have to be this way.
So there's the both and like the reality is, you're really bad. You're in really bad shape and I worried a lot about you and I was worried before but now that I've seen a bad day.
It's worse than I thought.
But also today, you're better than that. And so knowing that it's dynamic and you have good days and then you have super bad days. Gives me a lot more hope. So that's my super blunt. This is weird.
I appreciate it so much that I really do.
And hopefully it helps the people who are listening to this. I
hope so because you can gaslight yourself into thinking oh this is just a bad day. I have to make it through this day.
But if you keep having like THAT bad day you have to start interrogating yourself like wait a minute.
Could this be something where if I improved the bad days, or at least made the mark fall so far to “could I eventually you know stabilize or maybe even get better?”
I'm really my goal is to stabilize. I can't even dream of like, oh, wow, I'm gonna be totally fixed.
Yeah, you know, and I just feel like I'm not being pessimistic when I say that. I'm just saying. The reality is, you know, I live in America.
I think that's a good like, realist, realistic goal is to stabilize and have like a long term baseline.
That's manageable. And then whatever happens after that happens yes,
absolutely. Absolutely. Yeah. So you know, once they gave me 40 years here I am 52.
And so now they're saying if I get everything I need — at least 10 years. So that's what I'm trying to do is get everything I need
and with the right support ahem community Yes No. Content. Like now we're just rambling, but I feel like maybe that's a good place to leave it.
Yes, it is.
And thank you. Yeah.
All right. Thank you for coming Charis. This has definitely literally changed my life and it's probably going to be Why live longer.
