Support resources for families dealing with cancer and other serious illnesses

mistybadger55 said:My mom was moved from the ICU to the surgical ward today after spending four days there. Despite some pretty grim prognoses, she’s actually recovering from the surgery—which is a relief, I guess. They had to remove 35 cm of her bowel at three different spots, along with a massive tumor mass from her abdominal cavity. Tomorrow, they’re going to try giving her some liquids to see if her digestive system starts functioning again. I'm not getting ahead of myself, though—there's still a long way to go.
Does anyone know—is she allowed to go ahead with the brain MRI now? It’s scheduled for next week, assuming the wound heals up properly.
I’m also worried about the lung metastases—there are a few of them, and the largest one is around 12 mm. On top of that, both adrenal glands have growths measuring 50-70 mm in length and width. What am I supposed to do with that? Is there actually any help available? And what kind of symptoms should I look out for once they start causing real trouble?

mistybadger55 said:Mom's brain metastases have grown—they're sitting at 12x19 mm and 15x19 mm now. Even though those sizes are technically manageable—and honestly, you see them being cleared with Gamma Knife all the time—Dr. Smith just gave us a hard NO today. Short, blunt, and completely ruthless. His reasoning? He claims the "primary disease progression isn't under control"—basically because she’s still dealing with metastases in her lungs, adrenal glands, and a few other lymph nodes.
I don't get it—has anyone ever actually shown up there with brain metastases and still had the disease under control? If the cancer has already spread to the brain, it means things spiraled out of control a long time ago. And yet, they’re refusing treatment...😢😢
I don't get it, and I never will. It’s pathetic—just straight-up writing someone off like they don't matter. Maybe if they actually showed some decency, they wouldn't be stealing people's quality time.
I feel like smashing something right now.

About a month ago, my mom underwent five rounds of whole-brain radiation—and honestly, I’m starting to think it was a massive mistake. Since then, her decline has been brutal. She went from being a relatively mobile woman weighing around 175 lbs to someone completely immobile, barely hitting 110 lbs. Look, maybe she would have spiraled regardless because the metastases elsewhere are so extensive, but at least she wouldn't be suffering like this... we made the wrong call, and the guilt is eating me alive. She’s in the terminal stage now. She sleeps most of the day, can't sleep at night, and if we ask her anything, all we get are one-word answers. She eats a little, but it's obvious she's nearing the end—and she knows it, too. At her request, we had a priest come by two weeks ago.😢

mistybadger55 said:About a month ago, my mom underwent five sessions of whole-brain radiation, but looking back, I don't think it was the right call at all. She started declining at lightning speed right after—going from a relatively mobile woman weighing around 175 lbs to someone who can barely move and is down to maybe 110 lbs. Honestly, she probably would have hit this point regardless because the metastases are everywhere, but at least she wouldn't be suffering like this... we made a mistake... and I feel terrible about it. She’s in the terminal stage now; she sleeps most of the day, stays awake at night, and any conversation we try to have is just short, one-word answers. She eats a little, but I can see she's nearing the end, and she knows it too. At her request, we had a priest come by two weeks ago.😢

The radiation likely slowed the spread of the metastases. Without it, everything probably would have spiraled much faster. It breaks my heart that she's suffering so intensely, and that you're going through this alongside her. I know exactly what this feels like, and even though it's incredibly heavy, I know it's possible to find some strength within it and just endure. Hang in there and spend as much time with her as you can—hold her, kiss her, and talk about the good times and all those beautiful memories you share. When the journey finally reaches its end, those are the moments that truly matter.
Stay strong! Sending you love and hugs!

So, Dad’s supposedly recovering—he’s back in a regular ward now—but he’s running a fever and dealing with some kind of infection. The doctor mentioned the wound isn't healing quite right... I didn't totally catch everything Mom was saying, but apparently, there's this pinkish area about four inches from the incision and his oxygen levels are off. Hopefully it’s not gangrene, but who knows? There’s even talk about the possibility of having to redo the amputation.
He’s actually doing okay with food, though—eating his soft meals and stuff. If they do end up needing another surgery, is it possible to do it under an epidural instead of full general anesthesia? He had to go under completely the first time because he was on Heparin, but now he’s just on Lovenox, which should make things a bit safer. Man, it feels like we can't catch a break—I really thought we were finally over the hump and just looking at the recovery phase 😢.

Mom passed away today at 5:20 PM. It was peaceful—quiet, without much pain. I held her hand for the last two hours, though I can't say for sure if she was even aware of it.😢😢😢

mistybadger55 said:My mother passed away today at 5:20 PM. It was peaceful, quiet, and she didn't seem to be in much pain. I held her hand for the last two hours, though I can't say for certain if she was aware of me being there.😢😢😢

😢 I am so incredibly sorry...

Linda Baker51 said:😢 I am so sorry...

My sincere condolences. I am praying for her soul. May she rest in peace.

Man, I feel for 😢.

Rebeka, I'm really sorry to hear that. 😢

mistybadger55 said:Mom passed away today at 5:20 PM. It was peaceful, quiet, and she didn't suffer much. I held her hand for those last two hours, though I can't be sure if she was even aware of it.😢😢😢

😢 My deepest, most sincere condolences. Hang in there.
Your mom knew you were right by her side. You did everything a daughter should do for her mother. Find some peace, and let her rest easy now.

Thanks. We laid her to rest today—there was really no point in waiting. There’s just nothing left now but an empty space.

mistybadger55 said:Thank you guys. We laid her to rest today—there was just no point in waiting any longer. Everything just feels empty now.

I am so incredibly sorry.😢

mistybadger55, check your DMs, I sent you a message.

My deepest condolences, Rebeka—hang in there and stay strong 😢

So my dad ended up getting pressure sores 😢. The hospital staff isn't really turning him at all—and since he’s unconscious, he obviously can't do it himself. I honestly don't even know how long they've been there; I just happened to notice them while I was helping turn him today. If they had just given us a heads-up, we would've grabbed an anti-decubitus cushion already, but since it's Sunday and tomorrow is a holiday, we're stuck waiting until Tuesday to get one and actually make him comfortable.
They also mentioned there's dry gangrene at the bottom of his amputated leg. It doesn't seem to be spreading, so they'll probably just amputate that section on Monday. Honestly, the doctors said it's a better outcome than they feared—they were worried it would spread and they'd have to take the hip too, which he might not have survived. So, at least it's something. I'm just crossing my fingers that it stays contained and there's enough blood flow to the rest of the leg.

My mom told me Dad's sacral area is looking pretty red—there’s even a little 1 cm sore right in the middle. How bad is this actually? Is he going to be okay?
I'm honestly freaking out a bit because I've seen some pretty gnarly photos online. If we'd just known sooner, we would've grabbed that specialty cushion already! Now we’re scrambling to find some cream, a pad, and a pillow, but we can't even get them until Tuesday. For now, my mom just brought him a sponge we poked holes in to help cushion him up—just a little DIY fix to get us through until Tuesday.
The doctor says his labs all look good, which is a relief. But I'm still really worried about his leg—I'm just praying the line doesn't shift. I'm hoping they can clear out that tissue that isn't getting oxygen next week so he can finally come off the sedatives. Once that happens, he can hopefully start moving around more comfortably on his own terms while he works on building up enough strength to learn how to walk again...

Chloe Gray5, do that 24-hour pharmacy right now and grab some Granuloflex patches for those pressure sores. Once you get those applied, you don't touch them for three days. You have to sanitize and seal the area because if Dad has gangrene and that gets hit with a bacterial infection, things could go south incredibly fast. Also, pick up some Dekumil or Dermazine; the silver ions in the latter really help speed up the healing process. On top of that, you seriously need to get an alternating pressure air mattress with a compressor for the house. It’s basically like an air mattress that uses a pump to constantly shift the air so the patient is practically hovering, and the slight vibration helps boost microcirculation. My mom was bedridden from the neck down for a year and a half on one of those, and she passed away without a single pressure sore on her body.

So Dad’s got some fancy dressings on that wound at the hospital—could that be part of it? Mom said she’s grabbing a specialized pillow, a full-body positioning pad, and some heel protectors tomorrow morning. Plus some cream from CVS. Honestly, Dad was actually doing better this morning than usual... like, he was actually talking to us normally, asking questions and stuff. Usually, he's been on such high doses of sedatives that he just rambles about the past and doesn't really engage. Now that they've tapered him down, he even realized his leg is gone—told Mom they "chopped it off" and he needs to get a new one. I don't think he's fully processing the reality of it yet, maybe it's more subconscious? He said it so casually, like it wasn't even a big deal, which is weird, but I guess it'll hit him later. Still, seeing him present helps, and we'll just take it one step at a time.
I don't think we need a special mattress or anything. The doctors told us there won't be any more surgeries on his leg, so I'm just praying that once he kicks this UTI and gets his strength back, he can head home. I just want him to live life like before—walking around with maybe a walker or something—without worrying about pressure sores or being too drugged up to turn over at night. I can't wait to have him home, hopefully within the next week 🙂.

So, the doctor gave us the news this morning—Dad’s surgery is scheduled for tomorrow. The edge where they're amputating looks purple, which means necrosis, but since it's been 10 days since the first procedure, the line is pretty clear. It looks like the necrosis hasn't spread. That's a relief compared to last time, when the gangrene raced from his foot up past his knee in less than a week, turning his whole leg purple.
The doc says everything looks fine on the surface, but he can't be sure about what's happening deep down with the muscles. If the muscle tissue has lost blood flow too, they might have to go all the way up to the hip—basically an amputation at the hip—and if they had to remove the hip joint itself, he's too weak to make it through. But if things look okay inside, they'll just trim the bottom edge. The catch is, he won't know until he actually opens him up under general anesthesia, just in case they need to cut more. He also mentioned Dad is so frail that even the anesthesia is a gamble. It's the same worry we had with the last anesthesia, though he was even weaker back then and managed to pull through.
On the bright side, his labs have improved and look good, and he’s looking better overall—he's recognizing us again and finally getting some color back in his face, so he's definitely in a better spot.
I'm just terrified that it's reached the muscles. If that happens, he might still be able to get around with a prosthetic, but if they have to take the hip... he won't even be able to sit up! Assuming he survives the surgery, that is. 😢.
I really hope that necrosis stayed put. In the 10 days since the first surgery, that line hasn't moved—it's just stuck there at the bottom, and the skin higher up looks totally normal. I mean, surely those arteries supplying the skin also branch off to the muscles? So if the skin looks healthy, the muscles should be okay too, right?
Man. Surgery is tomorrow. I'm hoping they can just do an epidural if the leg turns out to be fine. 😢. This never ends.

Just wanted to let you guys know—Dad made it through! He’s honestly such a fighter. We aren't quite sure what they did during the procedure since the doctors haven't filled us in yet, but Mom is going to call them back tonight—I'm just crossing my fingers that they simply cleared out that necrotic edge.

So, I just found out Dad had his hip replaced. He made it through the surgery, thank god, but it was a massive procedure—who knows how the recovery is going to go. If he pulls through this but realizes he can't even sit up properly, let alone do anything else, honestly... Mom and my sister are convinced he might just give up. I’m still kind of reeling from the news, so I don't even know what to think yet.

Chloe Gray5 said:I just found out Dad had his hip replaced. He made it through the surgery, but it was intense—who knows how the recovery will go. If he pulls through but realizes he can't even sit up properly, let alone do anything else, I think he might lose all hope. Mom and my sister are certain he’ll spiral. Honestly, I’m still in shock, so I don't even know what to think.

I honestly don't even know what to say or how to encourage you 😢, but I am so sorry your dad is going through this. Just try to stay strong for him as much as possible... he’ll probably be discouraged, which is understandable, but you shouldn't underestimate the human will to live... he might actually surprise you all once the initial shock wears off.
Is there an option for a hip replacement down the road, once things stabilize, just so he can at least sit comfortably?
Hang in there. Stay strong.