Hey everyone! So, I'm back in this depressing little corner of the internet after taking a quick vacation. I’ve got a question for you all. Does anyone know a nurse in Washington, D.C. who’s looking for some side work or maybe a retired one? Here’s the deal: my mom stopped taking her Dexamethasone about ten days ago because she was on a break before starting Temodal monotherapy. Well, the headaches came crawling right back, so obviously, she’s back on the Dex—4 mg. She needs an injection every single day, which is a total nightmare since we’re all working full-time. When I asked her doctor about getting a home health nurse, he just told me she wasn't eligible. That's why I was thinking it would be a massive help if a nurse could just swing by every morning to handle the injection. Even that idea Angela Wright mentioned—learning how to do the injections myself—is totally out of the question. We live on the complete opposite side of town, so by the time I drove over to her and back, I would've spent just as much time as if I had simply driven her to the clinic.
Melissa Scott said:.. I absolutely adore my doctor because she’s patient and totally professional, but she also knows how to make you feel relaxed. My pap smears and results are always ready within a week, and she actually gives me a call at home personally to let me know how everything looks. The office, the waiting room, and even the restroom are just as nice as what you described, and I’ve honestly never had to wait more than 15 minutes. If you ask me, there's nothing wrong with getting supplemental health insurance, but it’s really not worth the extra cash if all you want is to see a gynecologist..
Can anyone slide me the info on that doctor via DM? I was just diagnosed with PCOS, and my current doctor hasn't exactly left a great impression... Thanks!
That’s exactly what I was getting at, but you beat me to the punch 🙂 Anyway, just a heads-up that the clinic will be open this Wednesday from 8 AM to noon, and you can reach them by phone at 01/23 32 825. It’s honestly devastating to think that in America, we see 2,300 women diagnosed with breast cancer every single year!!! Angela Wright, make sure you recharge those batteries this weekend and just soak up the magic of a 'normal' life 👍
Anonymous said:I 😢 absolutely hate this question... how much time am I actually going to have left by her side with a diagnosis like this and these treatments? 😢😢😢
wickedangel, honestly, maybe you’ll find it easier if you don't have that number hanging over your head. If it were me, I’d choose to never have heard it at all. It just casts this dark shadow over everything you try to do... Just so you know, Amanda Williams64 and I are sisters, so you get the vibe. Hey everyone.
brightgardener8;8884762]Vpavi reached out to me about a month ago—her partner passed away. I expect she’ll check in eventually, but honestly, she’s probably just trying to keep her head above water right now. She needs some space to process everything. And get this, lilac messaged me just this morning with some bad news too.
That's heavy. This is exactly what I was worried would happen... I honestly don't know how you manage to find a silver lining in all this chaos. I haven't mastered that skill yet. Maybe one day I'll get there. I really want to do everything I can for my mom, but between the endless grind of running between hospitals and clinics and trying to hold down a job I can't just walk away from, there’s basically zero time left for her. It's brutal. Anyway, gotta keep moving. Catch you guys later.
brightgardener8, you ever wonder what happened to the rest of the crowd from that whole glioblastoma thread (sismis, vpavi16,hal 9000,leny)? I went back and combed through their entire post history. It looks like only lilac and bednkacin have actually checked in lately. Peace!
Around here, palliative care—whether you're stuck in a hospital bed or trying to manage at home—is a complete and utter circus👎. Honestly, I don't see why they don't just legalize euthanasia. If they aren't willing to actually make life easier for someone during their final days, why not just save the money? Instead of pouring endless cash into treatments for people who can't even recover, why not just let them go peacefully instead of forcing them to suffer through it?
Why would THEY bother caring about anything happening outside the hospital walls...? It’s pretty obvious. My sister and I are slowly getting a front-row seat to the absolute chaos of our healthcare system😈. We were spared from seeing this side of things until my mom got her diagnosis. Lucky us, right? Can you please walk me through what hydrocephalus actually entails? I might have stumbled into some medical jargon, but clearly, I'm not an expert yet🙂 Hey everyone. Catch you later.
When I posted that question about why people were disappearing from the forum the other day, I honestly wasn't expecting this massive wave of bad news... Is there anyone out there with any good updates????
Angela Wright, I really hope you're hanging in there. Can you tell me, while your mom was going through the Temodal and radiation combo, was she staying in the hospital or at home? And were you guys giving her any of those supplements we talked about (like Propolis, noni, etc.) during that time? To be honest, they told me today that we aren't allowed to give my mom anything (specifically, I asked about Beta-glucan). Now I'm just sitting here wondering what the hell we're supposed to do... ah.
Hey everyone! The other day I actually put in the work and read through EVERY single post in this thread; now that I feel like I have a better handle on who everyone is, I notice most of you have gone quiet. Where did everybody go? What's the deal? Also, what’s the status on that website for the Sarcoma group—is that thing even live yet? And is anyone else interested in getting together for another meeting to talk glioblastoma and swap info? My mom starts her Temodal treatment this Monday, and honestly, I'm starting to panic about how everything is going to play out. Angela Wright, how is your mom doing?
crimsonfox102;8490582 said:May 10, 2007. Another life stolen by malignant Glioblastoma. My father-in-law passed away right here at home, in his son's arms... It’s hard to believe, honestly, but the suffering he went through during those final days—and what we went through alongside him—actually made it a little easier to accept the end. Even so, it feels surreal waking up in the morning and realizing I don't need to walk over to his bedside. We just know life has to keep moving. The hardest part was trying to explain to my boys why everyone was crying, why we wouldn't let them leave the living room, and why there was suddenly such a crowd of people rushing in and out. One boy is 7 and the other is 5, but they had to understand what was happening... "Grandpa is in heaven now, sitting on a cloud watching over us," I told them, which just sent them into tears. Then the older one asked: "He died, didn't he, Mom?" "Yes," I replied. And then he said, "You know, Mom, I feel so bad, and I have to cry, but I'm happy because I know his legs, his arms, and his head don't hurt anymore. God called him home because He saw how much Grandpa was suffering. I'm still going to cry and be sad for a bit, is that okay?" "Of course it's okay..." was all I could manage to say.
I am so incredibly sorry...
I know this might sound like a stupid question, but has anyone ever actually figured out *why* people get glioblastoma in the first place??? According to some stats they showed on Hloverkin's segment on CNN, the causes of these nasty diseases are roughly 30% diet, 30% smoking, 5% alcohol, while stress, lack of exercise, genetics, and other factors sit around 2-5% each. Personally? I think stress plays a way, way bigger role in all of this than those numbers suggest...
You’ll probably run into some trouble trying to track down an Aloe cactus. If you happen to be in Chicago, your best bet is to check out the Trešnjevec market. We started giving my mom the supplement, but honestly, we have no clue yet if it’s actually doing anything.
Hey there, has anyone here actually tried using bioenergy or any other kind of alternative medicine to treat these diseases? (I’m thinking specifically about glioblastoma cases) also, does anyone have advice on dealing with insomnia in patients? I’m looking for anything that isn't just more pills... Thanks!