Posts by Roger Hall15

It just occurred to me when I was looking at the diaper situation. My mom was allocated 90 bed pads and 180 diapers for a three-month period. Honestly, I have enough bed pads to feed a herd of cattle because, even though we use them in several different spots and not just the bed, we aren't swapping them out every single day. But two diapers a day!?
Meanwhile, I’m going through four or five myself because I refuse to deal with anything being damp, smelly, or soaked.

I am genuinely curious which idiot decided that patients like this are only entitled to two diapers a day. My brother and I are going to buy whatever she needs, regardless of the cost, but I can't help but wonder about all those years of insurance premiums she paid for some kid who probably doesn't care. All that money just so she can receive these kinds of humiliating approvals while she's sick and vulnerable. 👎

And look, my mom has her Social Security, and she has the two of us, so we'll manage to scrape by somehow, but what about the people out there who don't have anyone? People who don't have the extra cash to pick up a pack of diapers every few days?

Amanda Miller69 said:I really hope so. I also find myself hoping that she’s up there somewhere happy now, finally back by my dad's side.

I'm certain that's how it is. 🙂

Nancy Hernandez43 said:I tend to do the exact same thing... whenever I find myself getting worked up at my mom, I just take a beat to think and calm down before we even start talking. Honestly, I just can't find the nerve to be mean or, let's call it what it is, rude to someone who is much more vulnerable than I am, and they experience everything so differently. People always forget that a simple hug goes such a long way, and that family is really the only group out there that truly has your back when things get rough.

Yeah, unfortunately, you're left with just your immediate family. Everyone else seems to just drift away somewhere along the line.

I try to stay calm too and remind myself that every single day brings at least one situation that breaks my heart, not just the ones that test my patience. My brother actually told me something very similar to what you wrote above—something about how Mom and I aren't in the same position and aren't on equal footing. It really stung.😢

I thought I had somehow moved past it—or at least I believed I had—that daily confrontation with death or the fear of it, because this heavy grief and misery feels so much worse. But I know that one day, and probably sooner than I'd like, I’m going to be incredibly heartbroken that there aren't any more dirty diapers to change or stinky carpets to clean up.

brightgardener8 said:All that money being paid goes straight to the management of these facilities, who honestly couldn't care less about the patients, and the staff—aside from being spread incredibly thin—are likely underpaid too, which just leaves them totally unmotivated to actually do their jobs. I mean, there are exceptions, sure, but they are rare.

It’s not even enough that you have the illness itself, or the sheer agony of watching someone you love slip away; now, after all the endless running around with doctors and hospitals, you somehow have to fight the nursing home staff too.

In our specific facility, we actually have a situation where a staff member is screaming at a patient with Parkinson's just because he's being stubborn and won't follow orders. Just imagine that—someone who is completely demented is being "stubborn" and "not listening!!!!" Honestly, I know how to handle people like that better than someone whose entire profession is supposed to be caring for the sick...

It is just pathetic that we don't have any other options in situations like this.

Dear brightgardener8, 🙂

It always cheers me up (well, we aren't exactly "cheerful," but you get my drift) whenever I see you posting.

These stories are just horrific. These patients are incredibly difficult and they really do wear down your nerves, but you just cannot scream at a patient, for heaven's sake. I once actually mentioned my mother to my veterinarian (!) when she was yelling at my dog.😠

I also share that feeling that we just don't have an alternative and that, terribly, there's no way out. Regardless, it's just too much. It's still a blessing for our parents that they have us; we fight for them whether they want us to or not, working ourselves to the bone just to provide even a tiny bit of help or make things slightly more bearable. I can't help but think about the people who have absolutely no one else, people who are stuck relying on these kinds of (I get it, they're overworked, the pay is lousy, but damn it) people who yell at patients and have nobody to speak up for them.

Finally, regarding the nurse who visits Mom—she is truly a wonderful woman—but especially now during the summer, they are just drowning in work; she says they're handling twelve or fourteen people a day. It's just awful.

Nancy Hernandez43 Asks:
It’s honestly a bummer seeing things turn out this badly... especially when it feels like we’re all just staring down that inevitable moment everyone’s been dreading. It takes a hell of a lot of grit and mental toughness to navigate through days like these, but you just have to hang in there and keep pushing. Stay strong.

Donna Hernandez21 Asks:
Hang in there, Melissa Kim45. 😘

😘 😘

I actually started drafting this reply first thing this morning, but my sister popped in unexpectedly and threw me right out of my flow. It’s been a bit more manageable this afternoon—she’s just sitting there watching TV and she managed to eat something earlier—but the morning was such a struggle. Everything seemed to be going relatively smoothly at first, and then suddenly, she just completely refused her medication. She’ll just grit her teeth and fight you with everything she's got, and honestly, it's exhausting. To top it all off, I just paid the housekeeper for the seventh month in a row, and now I'm just sitting here feeling absolutely terrible about it all.😁

dustyranger11 said:Hang in there, Melissa Kim45, because I truly get where you're coming from—I’m going through something remarkably similar right now. I finally moved my dad into an assisted living facility, but he’s started acting out in ways that are just completely irrational, and honestly, I don't think the staff is going to put up with his nonsense for much longer.
The real issue is that the pain medication he’s being given just completely takes over, and he loses all sense of himself. He gets this burst of restless energy where he just wanders all through the facility, drifting from room to room, and the nursing staff honestly seems out of their depth trying to keep him contained. He’s even started writing things down in a notebook—claiming I need to come pick him up immediately or he’ll end his own life—so they call me, and by the time I get there, I am just utterly spent. I thought putting him in assisted living would make things easier for both of us, but it’s had the exact opposite effect. I’m barely sleeping because I’m getting those calls at five in the morning every single day because he’s managed to stir up some new kind of trouble. I’m spending nearly five hours a day there with him, too. Sometimes I lose my cool and find myself yelling at him, and then I just feel terrible about it. I really don't know how to help him. I have no desire to move him into a specialized memory care unit like a high-end rehab center, but if the facility can't handle him, I don't really have any other options left.

It all just becomes too much when you factor in the illness, the grueling treatment cycles, and the sheer weight of the whole situation combined. It’s enough to make anyone lose their grip on reality. But honestly, honey, I can see how much you’re struggling through this, and it really is quite a lot to bear. 🙂
I honestly think it’s about time for a serious sit-down with the administration at this facility. I’m pretty certain you aren't paying significantly less than what I’m shelling out for my home caregiver, and when we're talking about several thousand dollars a month, that isn't exactly pocket change. Now, look, I get along fine with her and I try my absolute best to be fair, but there’s a line—everything has to be done exactly the way I say it's done, period. If I prep a meal and she needs to brush her teeth because I didn't get around to it, then she brushes her teeth; if I decide she shouldn't be getting into bed during the day, then that's that. There, end of story. I’ve honestly felt like I was losing my mind over some of the things she’s done. And sure, I lose it with my mom too; I yell, I say things I shouldn't, I just lose my cool sometimes. We have this whole routine for changing her diaper where the caregiver and I work in tandem—one of us holds her steady while the other swaps everything out, and it's actually a pretty quick process once you get the rhythm down. But no matter how fast we move, Mom manages to find that exact split second when our hands are off to go pee on herself. Honestly, I can't help but feel like she's doing it on purpose.🙄
It’s always the same struggle with that wheelchair, honestly—we have to guide her backward because the moment we try to go forward, she just drops her legs, locks them up, and effectively "brakes" herself. No matter what you tell her, as soon as we start moving, she does it again. Trying to get her settled at the table is a total nightmare because she stretches her legs out as far as they'll go, freezes them up, and then just won't stop. And she's always gripping those armrests like her life depends on it. 🙄
That phase where she was spitting at the nurses and basically interrogating every woman in the hospital room, or wandering the halls in the middle of the night stealing cigarettes from whoever she could find... well, I really hope that's behind us, mostly because she just doesn't have the energy for that kind of chaos anymore.

And then there's us, the ones who have to deal with it all, paying for nursing homes and various types of caregivers just so we can all survive this, and so our loved ones can have some semblance of an orderly, dignified life for one more day. It’s just surreal, really, being called in at five in the morning like that. I know it’s incredibly draining for the nurses working with patients who are exactly like our parents, but—sorry, but that's just the job they signed up for. It’s the same reason I ended up logging into work today even though I’m technically on vacation; things just had to get done. What feels truly degrading and frankly disgusting is how we don't talk about humanity or the actual care for the elderly, the sick, the helpless, and the dying, and instead, we focus entirely on the logistics of the job.
The world is starting to feel increasingly hollow to me.
From what I've gathered, at a place like a high-end assisted living facility, you're looking at paying maybe three or four thousand dollars a month, and that doesn't even include the cost of diapers or medications. It's a complete disaster. 👎

I know how hard this is for you, I truly do, and I know there isn't any easy fix. Just hang in there. 🙂
Stay strong.

Thanks, ladies. 🙂

Mom barely touched her breakfast this morning. She just won't open her mouth, won't do it, period. Maybe it's just her way of making a choice at this point. Or maybe we're all just being stubborn by spending an hour trying to coax her into eating. It’s just plain toast, so that’s really all we can offer.

Tomorrow—well, tomorrow we'll try to give her a little sponge bath in bed, and I think washing her hair would be a good idea too, though I have a feeling she might not go for it. We'll see. Having that rolling chair has made things so much easier lately.

She just shakes her head whenever I ask if she's in pain, and honestly, I suspect there isn't much left for her to actually feel.

Carol Ramirez said:Hey everyone, 🙂
I don't want to take up too much space here in a place meant for supporting those who still have hope as long as they're breathing, but I just had to say hi. I've been taking a long break because I needed to focus on myself for a bit. Long story short: I'm getting married in a month, I've enrolled in a post-grad program, and life just keeps moving. 🙂

I know that's how it has to be, because the ones we've lost would want me to be happy. I'm trying to make sure that staying positive and holding onto the good memories remains my way of fighting against this illness. I couldn't stop the inevitable, but I can at least try to make sure I don't get sick myself.

Angela Wright 🙏

Sending love to you all :*

👍 🙂
I'm certain they are incredibly proud of you.
Best of luck with everything. You truly deserve it. 🙂

Hey there, everyone, old friends and new alike. 🙂

I don't have much positive news to share regarding our current situation. Mom is getting weaker by the day; she barely walks anymore, though she tries to push herself up every once in a while. My entire existence lately feels reduced to just trying to keep her clean and making sure her diapers stay dry...
And then there's the constant vigil, staying on watch because she rarely finds the strength or the right moment to do the things she isn't supposed to be doing. 😁
She sleeps so much. She drifts. Every single mealtime has turned into this grueling mental battle. She won't open her mouth, won't chew, won't swallow. She wants to eat, technically, but it’s as if she expects the food to just manifest itself inside her stomach by magic. Honestly, I’m terrified that she’s slowly letting go of everything, slipping away, while we... we are here struggling, fighting, killing ourselves just to coax some final spark of life out of her. She doesn't really look like herself anymore, but still—it's as good as it can be. There are no open sores, her hair has grown out, we’ve even dyed it; if we can provide these last little remnants of human dignity through all this, then it's okay.
We're going to pick up a wheelchair soon—not a walker—just so we aren't constantly hauling her along. For now, we still make sure to get her up to the living room every morning so she can sit at the table for meals, and then back to bed at night. Once we hit the point where we can't even manage that, then we'll just have to wait.
We aren't really thinking about the cancer or the chemo anymore; that's all behind us. It's more about her incredibly poor physical and, especially, mental state. For instance, the other day she was genuinely surprised to see her wedding ring on her finger (she hasn't taken it off in nearly fifty years) and said, "Oh my, I found this, Dad and I bought this when we were young." Often she just stares blankly or keeps her eyes half-closed. More and more, she won't talk at all, just nodding or shaking her head.

I will either endure this or I won't be around. This suffering—both hers and ours—has to have a purpose, it has to, even if there are moments where I feel like I'm caring for a complete stranger. In truth, if I had loved my mother any less—God forgive me—I never could have worked this hard or pushed myself this far. And maybe that is what Love actually is; maybe we just see something else because of our own twisted perspectives, being selfish, or holding onto anger and grudges. They say the hardest thing is forgiving your parents. I used to feel that way. Today, I am grateful to them; this hardship is one great, massive mercy. It has to be Love.

David Jackson79 said:Hi there. I have two questions:
Since the worst stuff almost never hurts right at the start, can the first signs of a malignant tumor be guessed by whether someone is losing weight rapidly?
Is sudden weight loss only related to TB or cancer?
Thanks

If you’re seeing a sudden, unexplained drop on the scale, it’s definitely a sign that you need to go see a doctor, because even if it isn't something malicious, it certainly means something is going on inside your body.

Kate Watson53 said:I recently lost my dad to pancreatic cancer, and honestly, it was just this grueling, exhausting nine-month battle. I think everyone here understands that specific kind of helplessness—that feeling when you’d give anything, your entire life, just to fix it for them, but you can't. So, to anyone else currently in the thick of it, I just want to send you all so much strength; please hang in there and keep fighting for your loved ones, because miracles really do happen. They told my dad he wouldn't even make it out of the hospital, yet we managed to have eight more months together. Every single day felt like a tiny miracle in its own way. Even though he's gone now, I truly believe he’s still right here by my side, watching over me.

Please accept my deepest, most sincere condolences.

I have no doubt that your dad is still walking right beside you. 🙂

rapidbear8 said:I posted here once before about how much I was struggling after my dad was diagnosed with lung and brain cancer... he ended up losing his fight on July 15th😢😢😢 which was only six months after we found out everything was falling apart...

Please accept my deepest, most sincere condolences. 🙂

Linda Wright5 said:Hey everyone,
I'm checking in with a heavy heart but a sense of peace to let you all know that my sister passed away quietly in her sleep last night.
She was such a fighter, and I honestly couldn't be prouder of her.

I’ll still be hanging out here reading everything, and I’ll help out whenever I can.

Hang in there, everyone, and just keep moving forward.

Dear Linda Wright5,

Please accept my deepest condolences. 🙂

analogridge17 said:After a long, grueling battle with lung adenocarcinoma, my grandfather Ivo passed away this past Tuesday. If anyone happens to be looking for Traceva 150 mg tablets to manage that specific illness, I’m willing to let them go for a very reasonable price. Feel free to shoot me a private message if you need them.

Please accept my deepest condolences.

Hang in there, ladies. Just stay strong. 🙂

I know exactly how heavy this all feels. I’m dealing with the same damn struggle myself. There are still a few people who haven't checked in for a while, and I’m just sitting here hoping everything turned out alright with them. dustyranger11, you mentioned earlier that you just need to vent, even if it feels like nobody’s actually listening. Well, believe me, we are reading. 🙂

Cancer is a real bastard.👎

The sleepless nights aren't quite as much of a battle at our place anymore, mostly because Mom is just too exhausted and ends up sleeping through most of it, which honestly makes things a little easier on my end. My mornings usually start with a bit of a shock to the system, but I manage. Today she had some donuts and Prosura for breakfast—she eventually got the Megostat too—because that's what she craves. I just give her whatever she asks for. Most of the time, she can barely even hold a donut in her hand; she’ll take a tiny bite, stop chewing, and then just start rubbing the donut against her hair. You can't really tell her to stop doing it anymore; you just have to gently move her hand away. It’s the same deal with technology, too—she can't tell the difference between a phone and a remote control anymore. I keep the volume low on the phones and just keep the remotes out of reach. I'll set something on the TV for her to watch, and she'll just stare at it. At this point, I think just having the TV on is enough for her; she isn't really following the plot or anything.

I thought about titling this post "Whining," but I changed my mind at the last second.😁

Since she isn't moving around much anymore, we’ve been dealing with some issues regarding her bowel movements. Tonight we're doing some herbal tea, and tomorrow is going to be 😲 so I need to get to bed early just to mentally prepare myself. I mentioned earlier that we decided to dye her hair. Some people asked if she was actually allowed to do that. Of course she is, because honestly, she looks a little bit better with that light brown shade, and I don't see why she shouldn't treat herself. Well, now we have to do it all over again, which is always quite an adventure. Slather it on, spread it around, and after fifteen minutes, we have to be ready in our old t-shirts for that frantic fifteen-minute dash to the bathroom, and then—God help us. As far as a place to go goes, the one my nephew has is perfect. Nice sturdy plastic, with little teddy bears printed on it. 😍

It’s happened before where she doesn't even recognize us. But okay, we got through it. It was such a dramatic scene over at my brother's place, and since he and Mom are so close, it hit him pretty hard. For me, it was a bit easier to handle. 🙄

She forgets what she was trying to say and can't even finish a sentence. If we ever reach the point where she needs a phone book, you can forget she'll remember who she was trying to call.

The other day she insisted there was someone on TV, but she couldn't for the life of her say who. She said she'd show me, but they just couldn't get the woman to appear on screen. Then she started demanding that I call Danielle (who we have absolutely no connection to) to ask her when the game show starts. 🤷

My mornings usually start with soaking sheets (because things leak, damn it), wiping everything down, and getting dressed. I try to make sure she manages to get at least a t-shirt on in the morning. I don't bother ironing them anymore, obviously; I just hang them up to dry, and it's fine, especially since they end up getting dirty a few times a day anyway. We're having to feed her more often now, particularly if it's a heavy meal. Besides the fact that she's burned holes through everything living with her cigarettes, everything is just a mess now.

It’s truly incredible how things from the past just come rushing back to her. One day she called me by her sister's name—the one who passed away about fifteen years ago. Someone left a phone within her reach, so she grabbed it and started dialing some of our old numbers. It was so strange seeing those names pop up on the display. 😢

wanderingharbor61 said:I know I’ve been MIA for a bit, but I just had to jump back in here to share some wonderful news with everyone😍, especially since I've been catching up via email and texts with IBM, Elizabeth Gonzalez55, noemi, and belami!

Sending my best to all of you; may God watch over you, stay strong, and keep pushing forward in your health journeys🙂!

Grace Fowler I went back and reread all your posts again today—hang in there, you really are my hero!

Well, that's fantastic. 👍 Truly wonderful news, thank God, and let's hope it stays that way. Best of luck. 🙂

Donna Fox48 said:Hi everyone, it’s been a while since I last posted, so I’ll give you a quick update. My dad was diagnosed with small cell lung cancer about a year and a half ago (he's 62).
He had a brain CT scan a month ago and it looks like things are spreading there too. He isn't showing obvious symptoms yet, but we’ve been warned that he could start having seizures or even become aggressive, depending on which part is affected. He's starting radiation now, and after five sessions, he'll have another CT to see how things are progressing. Honestly, he was incredibly negative when he found out, and I think his nerves are just shot; he used to absolutely adore my little girl and would go for walks and play with her constantly, but now he’s actually forbidden me from bringing her over because she can be a bit high-energy. Mentally, he’s just completely broken; he seems to have lost his spirit entirely, and I really don't know what to do. Has anyone gone through something similar?

My mom has the same thing—small cell on the bronchus—diagnosed 14 months ago, and she’ll be 72 at the end of this year. She’s having neurological issues, and her recent discharge papers suggest seeing a neurologist, but she is so frail that we can't get her anywhere, absolutely nowhere. Even if we tried to take her to a clinic in Small Town, USA, they basically tell us there’s nothing left they can do for her, so we aren't looking for much more than basic checkups, and even then, we're just trying to keep her comfortable as much as possible.

She’s been falling around the house, covered in bruises; she hit her head once and honestly, thank God, she didn't break her skull. The fact that she's only 35 kilos has actually been a saving grace in some ways. I don't have any recent confirmation—her brain scans were clear before—that there are metastases in the brain, and whenever she gets dizzy or unsteady, the doctor just keeps saying it's "from the chemo." She was given John Doe to help strengthen her up and later Jane Doe, but neither seemed to help. Since the falls started getting more frequent, everything has just spiraled downward. She was always a bit high-strung, but now she’s just frantic with despair and helplessness, and all of us are right there with her. I can't even lift her because she can't stand on her own two feet anymore. Now I'm just fighting to delay the moment she has to go to bed, because once that happens, things will get incredibly difficult. It’s brutal. We practically have to carry her to the bathroom, and even that feels more like a psychological necessity than anything else. She’s so helpless that she doesn't even try to get up from her armchair anymore, and if we do manage to get her into a chair, someone has to stand right next to her so she doesn't crash to the floor. It’s a little easier that way, but the whole thing is just humiliating and beneath any kind of human dignity. Objectively speaking, she isn't suited for home care, but even though she's losing herself, sending her to a nursing home feels like a death sentence. I'm not saying I'm hoping for a miracle, but I'm not saying I'm not, either. I just don't feel much of anything anymore besides pure misery. Everything feels like a struggle here. I can't even bathe her by myself anymore; I need another pair of hands just to hold her steady or to be there in case she slips.

I just want to tell you to brace yourself, gather every ounce of strength you have, and please, don't hold it against him, no matter what he says. Sometimes it is just damn hard. Maybe talk to the doctor about getting him something for sedation; some doctors tend to suggest antidepressants, but don't put too much hope in those working perfectly. Just try to focus on making his life as easy as possible, thinking about the care, the keeping him safe...

Hang in there.

Nancy Hernandez43 said:You’re being so realistic about all of this, and honestly, incredibly brave. Necessity has a way of forcing your hand, and like you said, maybe you can even find a reason to be grateful for that push. You’re putting so much strength into this whole ordeal, and I really admire how you aren't backing down. Every time you post, it hits home for me; it makes me look back at my own situation—which isn't even half as heavy as yours—and I just think about what you wrote at the end of your last message: things are tough, but we can only choose to be braver and happier because we're all going through this together, and for now, we're doing okay..

Hang in there! kisses

Linda Campbell said:My mom used to take fresh sprouts, popcorn, and grapes. I’ve also heard about those homeopathic products; a girl I know whose dad had stomach cancer tried them, and they were a huge help. I actually heard about an excellent product on NPR (I used it myself for CIN 1) called R. Regulat from Natura Viti. There was a man on the program who used it during chemo, and he mentioned it helped mitigate all the side effects. Look up the number for NATURA VITI, give them a call, and just ask; apparently, the results for getting through chemotherapy are great. It’s all plant-based—soy, peas, nuts, fruits, and veggies, but fermented. My immune system was terrifyingly weak; I had CIN 1, E. coli, sores, bleeding, and all sorts of issues, but after just one bottle and some Centrum vitamins, my PAP test came back clear. Give it a try, wishing you so much luck, Melissa Kim45, hang in there!

Girls, thank you so much.
😘

And thanks to everyone else who has ever shared anything here and given others the strength to keep going.

Mom is terribly thin; today I had to clean her up because she had a bowel movement and I didn't want her skin to get irritated overnight. There’s no muscle left, just skin stretched over bone. I don't even know when she lost it all. Her weight hasn't shifted that drastically; we haven't seen her at 35, 36, or 37 pounds in quite a while. During her last bath a couple of days ago, she looked different. For a few days, she’s been completely erratic, just acting wilder and wilder. She’s been smoking a lot, coughing, fussing, coming into my room in the middle of the night, just losing it. In the afternoons, she’ll lie down and then wake up—not just startled, but absolutely terrified—and start calling people on the phone a hundred times. The doctor isn't concerned (of course he isn't, since most patients with this diagnosis don't make it a year), and he won't admit her to the hospital, just for check-ups. He claims there’s nothing he can give her. They've handled us very smoothly, which I totally get.
On one hand, nobody would care for her like this, and her behavior would be a major issue, but on the other hand, I can't be away from work for too long.
I don't know what to do anymore.

He gave her Megostat, and right after the first spoonful, I felt like she actually looked a bit hungrier. Even though she eats more or less okay, it clearly isn't enough, and when she hits a bad phase, the whole thing is just horrific.

She has cut down on cigarettes drastically, yet she still gets caught badgering people, putting them in that awkward position where they eventually have to confront me.😁
I know there isn't much point in trying to forbid it, but honestly, there’s no sense in her just collapsing all over the apartment either. It’s all tied up in those bruises and rashes. On Sunday, she didn't have a single episode the entire day, which made me think, maybe things are finally looking up. Yeah, right.
Today she can barely stay upright, and I’ve lost count of how many times I’ve had to lift her up and help her move around. It gives me the chills whenever I see or hear her trying to stand, but what am I supposed to do?

Her doctor is pushing for some kind of IV infusions, but the specialist says no. I really don't want to put her through that—why subject her to more physical and mental exhaustion if it isn't actually going to change anything?

Sometimes she just completely drifts away, and seeing that is incredibly hard. She forgets who she’s even talking to. I just find myself waiting for the day something like this hits my brother or me. I haven't the slightest clue when that might be.

I honestly don't even know how to put the situation here into words. I’m at a point where I can't even tell if I'm seeing things clearly anymore. Everything should technically be fine, but it just doesn't feel that way. The doctors tell us it's all just fallout from the chemotherapy, and since my mom is already 71, her age obviously makes everything a much harder climb. She falls around the house—not every single day, but when she gets worked up over something, it can get pretty terrifying. There have been so many times where a sudden thud woke me right up; she’s such a tiny woman, but when she goes down, it sounds like someone tipped over an entire heavy wardrobe. Today alone, she took about five falls, most in the morning and one in the afternoon. She hit her head and ended up bleeding. Honestly, God has just been looking out for her so far, keeping her from killing herself or breaking something that would force a long hospital stay, which we all know wouldn't end well for her. It's physically draining, and mentally it's just as exhausting because you find yourself imagining the worst and you just can't break through to figure out what's actually bothering her. But then, the second she wants something, she becomes incredibly sharp and resourceful; she remembers exactly what she needs the moment she decides she wants it. 🙄

We’re essentially at a loss for what to do. She can't be left alone, but even when someone is with her, it doesn't solve the core issue—nobody is ever going to be by her side twenty-four hours a day, forever. There isn't a facility or a nursing home out there that provides this specific kind of intensive care. I mean, they exist, but not for people in our situation. When the bad days hit, I don't have any answers, other than maybe just having to restrain her. 😁
The reality is that you have to be constantly hovering—watching to make sure she doesn't fall, making sure she doesn't stand up too fast, watching her turn, changing her diapers, tracking when she's gone to the bathroom (because if she hasn't gone in three hours, she'll claim she hasn't gone all day), and trying to navigate her speech. You have to listen to what she says because sometimes it might be the truth, but you also have to largely ignore it because most of the time it isn't. You try to talk to her and engage, but you realize she's not really taking any of it in. As I’m sitting here typing this, she’s just flipping through channels, staying on any single program for no more than three minutes. She’s probably bored out of her mind, though I used to think she’d settle in for a football game; she used to love stuff like that until recently. Now, everything seems trivial and dull to her, aside from a few specific shows she sticks to.

And all of this is happening despite her test results being relatively decent. Her sodium levels actually went up slightly since the last check, which suggests the tumor hasn't flared back up, and as for the rest of the tests—well, we're just delaying them. She simply isn't up for it; the mere mention of a hospital sends a look of pure terror into her eyes, and we just don't want to put her through that. A more invasive exam would likely break her, or the doctors might just discharge her for being uncooperative. 😁

Regardless, we just keep moving forward. I ended up dyeing her hair, so she doesn't wear anything on her head anymore; she has short hair now, almost like a boy's cut. 😁 She actually forced my hand on that, and I'm actually thankful she did, because it helped me set my priorities straight. If this is what the fight for life looks like, then you only focus on what is absolutely vital to survival and what prevents the immediate crisis. Everything else is completely irrelevant. We'll just let things happen as God intends; our job is simply to do everything within our power. No one should have to endure this kind of suffering, though I suppose if I'm being honest, my mom and I are doing better than some others out there, whether they're sick or healthy.

Rebecca Young63 said:Hey there, hey there,

I am just so happy.
Yesterday was my very first chemo session, and they gave me the heavy-duty stuff right out of the gate. But honestly, I feel like I didn't even get anything at all. Nothing weird is happening to my body, absolutely nothing. My hair is going to fall out, obviously, but that’s really the least of my worries.

Thanks again for all the support.

Best,

So you lose some hair, fine—it’ll grow back thicker and better than before.
Just make sure you take care of yourself, because you might hit a wall of fatigue in a day or two. Not that it's anything you can't handle, though. If my mom could pull through it, I know you can too, God willing.👍

Hang in there, everyone, ladies and gents. 🙂

darkmaker70 said:Thanks! They confirmed at the Mayo Clinic today that the markers look good, and radiation starts this Friday... I’d heard the wait times for radiation could be pretty brutal, so we were actually surprised since it hasn't even been a month since the surgery. We're just crossing our fingers that she handles it well—does anyone else experience many side effects from radiation?

There are reactions, sure, but they aren't even remotely comparable to what you go through with chemo. While the radiation is actually happening, you can't apply anything to the skin, but once it's over, you probably should. For my mom, the skin was basically her one and only "issue." She didn't end up getting any open sores—which I hear does happen sometimes—but she still has some discoloration, even though it's been several months since she finished radiation. Honestly, compared to chemo, it's negligible. Once the radiation treatment wraps up, you can use things like Bepanthen, calendula ointment, or aloe vera; there's actually a recipe on another thread involving a blend of essential oils that works great, so everything is fine.
And you just have to be careful when showering.

My throat tightens up every single time I see someone new joining the group. Hang in there, everyone; you all have more strength inside you than anyone could ever imagine. 🙂