Support for families dealing with cancer and other serious illnesses (Part II)

Elizabeth Watson28 said:The metastases have spread to my back, lungs, kidneys, and liver. I’ve agreed to radiation on my back, but I’m refusing chemotherapy. Is there any other way to treat this?
Thanks in advance for all the answers

What exactly is the diagnosis?

Look, having metastases is definitely not a stroke of good luck, but there are certainly variations where doctors can get things under control... everything is on the table, but it really hinges on the specific diagnosis. Nowadays, we have access to all sorts of biological therapies, targeted drugs, and cytostatics. Clinical trials for new medications are much more accessible than they used to be. You also have options like proton therapy, Gamma Knife, CyberKnife... it all comes down to the diagnosis and the current status—specifically how many metastases there are, which organs are involved, and exactly where they are located. All of those factors dictate the next steps and the treatment method.
Don't give up! There are people on this forum fighting metastases for years, and some have even pushed through over 70 rounds of chemo!

Dennis Carter2 said:I just joined this forum because my father fell ill with lung cancer. He has a 9x7cm tumor located in his right lung. Surgery wasn't an option, so they suggested chemotherapy.
Unfortunately, my dad is refusing medical help and turned down the therapy. Right now, he’s just using some ointment and some cannabis oil we barely managed to get our hands on. I can't say for sure if he feels better than when he was in the hospital, but I honestly don't know.
What have your experiences been like with this?

In terms of actually curing it? None. I know smoking weed helps manage the pain, but regarding the oil, I know a guy who had a brain tumor and used it, yet things still progressed and, predictably, he passed away.

It’s a shame, really. If your dad has made up his mind, you’re going to have to live with that decision, though I have to point out how much of a waste it is since there aren't any metastases. A friend of my mom's had small cell lung cancer, and luckily, it hadn't spread. People often call this disease "the 100-day cancer"—you can probably guess why. She went through chemo and radiation, and she’s been cancer-free for four years now! Around here, people view chemotherapy as being even worse than the disease itself, so many people have an immediate aversion to it. 😢

A close friend of mine is fighting stomach cancer... there are metastases present, so she’s still going through chemo.... She’s really withdrawn lately, and she just sent me a message saying, "I feel terrible, I don't feel like talking," and honestly, it just breaks my heart because I can't seem to reach her.... and I really don't want to be pushy about it either...
She’s currently at a hospital in another state getting her abdomen "perforated"... could someone please explain what that means? Like, what are they actually doing to her? She’s dealing with ascites, too.

I don't have all the specific details since she’s never been one to talk about this damn cancer... but if anyone could help me understand what they're doing for her right now, I would be so grateful.

Jamie Jones8 said:A friend of mine is fighting stomach cancer... there are metastases present and she’s still undergoing chemo... she’s completely withdrawn, sent me a message saying, "I feel terrible, I don't want to talk," and it's breaking my heart because I just can't get through to her... but I don't want to be pushy...
She's at the hospital in another state having "peritoneal lavage"... please, what does that mean? What are they doing to her? She has ascites, too.

I don't have all the details because she never liked talking about this damn cancer... help me understand what they are doing to her right now.

Dear Jamie, I totally get why you're desperate to reach out and figure out exactly what's happening, but you have to remember that this is her battle. It’s hitting her way harder—emotionally, mentally, and physically—than it’s hitting you. Respect her need for silence. If she doesn't want to talk about it, let her be. She has more than enough reasons to shut down, and honestly, it's clearly her way of coping.
Regarding the lavage, it could be a few things, but it's likely involving some drainage around the gallbladder or pancreas area. Don't drive yourself crazy over the medical specifics; even if you had a full medical report in your hands, there isn't anything you could do to change the outcome. They are simply performing the procedures necessary to manage her symptoms and improve her quality of life. Just be the friend she needs right now—talk to her about anything *except* the illness. Her life is so much bigger than this cancer and these metastases, even if they are consuming all her energy at the moment.

Angela Wright said:Dear Jamie Jones8, I totally get why you feel this deep need to reach out to her and really grasp what she's going through, but maybe we should keep in mind that this is primarily her battle, you know? It’s honestly so much harder for her—emotionally, mentally, and physically—than it is for anyone else, so I guess it might be best to respect her wish to not talk about it or share details with anyone. She probably has more than enough reasons for wanting privacy; it just makes things easier for her, clearly.
As for that bloating issue, it could be anything, really, but it's most likely some kind of blockage or issues around the gallbladder and intestines... so please don't let it weigh on you too heavily because even if you had all the answers in the world, there isn't much you can do to fix that part of it. The doctors are just doing what they need to do to make her life as comfortable as possible. Just try to be the friend she needs right now, which I think means talking about everything else, since her whole identity is so much bigger than the cancer and metastases that are taking up so much of her focus lately.

In these two years of her being sick, I think we’ve only mentioned cancer maybe three times... and even then, it's usually just when she's heading in for chemo, and that's pretty much it. Honestly, I've stopped asking "how are you?" for a while now because I realized it just drives her crazy..
It's actually because I don't have anyone else to talk to about what she's facing that I end up typing here to you all... thanks so much for explaining that, too, because I was so confused about what "stomach bloating" meant when they had already removed the whole thing..
I understand everything... it's just so hard—I'm just so incredibly sad seeing her suffer.

Angela Wright said:I mean, I honestly thought he was dealing with one of those doctors who acts like a priest—where his word is basically Holy Scripture...🙄
Look, I really can't stand this dark turn things have taken. 😢
Let’s all just try to hang in there until Monday when he finally gets back from vacation... because goodness knows, what a joy it is to deal with hospital stays during the holidays.🙂

Yeah, does any of this even make sense anymore? His digestion still isn't working, and he’s running a fever twice a day (around 100-102°F). They hit him with some Voltaren, he breaks into a sweat, and then he's fine for a bit.
They keep insisting everything is perfectly fine, but how can that be? We aren't crazy.😲.

He was in tears yesterday; he just can't take it anymore. It absolutely breaks our hearts to watch him go through this.

I can't help but blame myself for pushing him to go to Jordan. I keep wondering if things would have gone more smoothly if we had stayed at the Mayo Clinic instead.

Look, all this "if only I had" and "if only he had" talk is just empty nonsense... you clearly had the best intentions, but dammit, you didn't just take him to some local vet; you took him to a hospital where they perform surgeries and provide intensive care every single day. Since this situation has dragged on far too long and you’ve lost faith in the current setup, I think the smartest move is to request a transfer to Gastroenterology at Rebro. They have top-tier GI specialists there, and the oncology department is excellent too.

Zachary Howard2, don't go getting ahead of yourself. I do the exact same thing all the time, even when I know deep down I did the best I could with what I had at the moment, so I'm sure it's the same with you. Let us know what His doctor says today.

Hey everyone! I’ve got a question for those who’ve unfortunately dealt with glioblastoma—specifically @Angela Wright/">@@Angela Wright. My dad is fighting glioblastoma; he was diagnosed back at the start of October last year. He’s already gone through radiation and four rounds of chemo. Now, his oncologist has called it quits on the chemo because the tumor keeps progressing despite the treatment. Honestly, the chemo just wiped him out, and we’ve started coming to terms with the fact that the end might be near... The doctor prescribed dex, which he’s been on for two months now. It’s safe to say he looks better—the difference between how he looked before and after the dex is night and day. Because of my profession, I know my way around pharmacology, so I’m fully aware this isn't a permanent fix. I’m just wondering, roughly how much longer do we have? I’m constantly on edge—I'm just terrified of letting myself hope...

goldencrane3 said:Hey everyone. I have a question for those who have unfortunately dealt with glioblastoma, specifically Angela Wright. My dad is fighting glioblastoma; he was diagnosed at the start of October last year. He’s already gone through radiation and four rounds of chemo. Now, his oncologist has called it quits on the chemo because the tumor kept progressing despite the treatment. To be honest, the chemo really took a massive toll on him, and we’ve already started bracing ourselves for the end... The oncologist prescribed dex, which he’s been on for two months now. It’s no exaggeration to say he looks better—the difference between how he looked before and after the dex is night and day. Because of my professional background, I’m well-versed in pharmacology, so I know this isn't a permanent fix. I’m wondering, roughly how much longer do we have? I am constantly on edge, and I'm terrified of letting myself hope.

Look, it’s all incredibly individual... In my mother's case, it lasted about two and a half years. By the time she hit that last dose of Temodal, she was basically bedridden and couldn't get back up. From there, the disease just steadily progressed, stripping away her physical abilities bit by bit. It started with her legs, then moved to her arms, and eventually, she lost the ability to speak entirely—she could only move her eyes, though thankfully she was still able to swallow until the very end. Dex helps keep the edema somewhat under control and eases the pressure and pain, but the tumor keeps advancing regardless. I feel for you; there are just too many of these gliomas lately, even though they're supposed to be rare according to the classifications. It's obvious that the incidence rates are shifting on a global scale.
Don't waste your energy obsessing over how much time is left. The end is coming sooner than anyone wants to admit, so just make sure you soak up every single meaningful moment you can with him.

Linda Patel21 said:Zachary Howard2, don't go getting ahead of yourself. I tend to do that quite often myself, even when I know deep down I did the best I could with the information I had at the time. I imagine you're in the same boat. Let us know what his doctor has to say today.

Well, the doctor finally made an appearance, and the verdict is that he might be able to head home soon.
They ran some tests on his fluid and food intake, and everything seems to be functioning normally there.
They stopped the Kabiven infusion, which turned out to be the culprit behind his fever.
The coughing is just a result of him lying down constantly.
As for the vomiting, it’s purely nerves—his stomach is reacting to his mental state; it's entirely psychological and tied to his depression.

I was just talking to my sister-in-law about a plan: first, we need to try and get him up and out of bed. Second, we have to convince him to actually take those immune supplements we brought for him. And third, I really want him to consider antidepressants. I am genuinely worried about how his mother-in-law is going to manage all of this once he’s back home, especially once the chemotherapy starts.

He has completely surrendered to the bed; honestly, if he could, he’d just let it all end right this second.

Does anyone have any actual, sensible advice?

Fiz, I honestly think he'll feel way better mentally once he's back home. Being stuck in the hospital destroys even healthy people, let alone someone fighting this hard. I’d definitely talk to the Doctor before starting any practice—if he needs some meds to help his mood, better that than just giving up. You know how much it matters that he doesn't quit. Also, like I mentioned before, maybe look into contacting a support group (if there's one for this specific illness) so he can talk to people who have actually been through it. I don't know, being smart is hard; everyone reacts differently, but you've gotta try. Good luck! Keep us posted.

Angela Wright said:Oh honey, it’s honestly so different for everyone... for my mom, it lasted about two and a half years. By the time she hit the last dose of Temodal, she just couldn't get back up—the disease kept progressing and she slowly lost control over parts of her body. It started with her legs, then her arms, and eventually she couldn't speak at all. She could only move her eyes, though luckily she was still able to swallow until the very end. Dex helps keep the edema somewhat under control and eases the pressure and pain, but the tumor keeps spreading... I feel so bad, there are way too many of these gliomas when they're supposed to be rare according to the classifications. Clearly, the incidence rates are shifting globally.
Don't beat yourself up wondering how much time is left. The end comes far too fast, unfortunately, so just soak up every single good moment you can with him.

We’re all trying our best to enjoy ourselves—sometimes I even briefly forget he's sick. He's been on such a high lately, full of energy and fighting spirit, doing everything he can to stay strong.
Now that the guy and I are finally living alone in our own apartment, we're getting excited about celebrating Christmas together, and then it hits me—Dad might not be here...
Sometimes, when I’m feeling truly down and miserable, I catch myself wondering how I'll even make it through the funeral. It's awful that those thoughts even cross my mind, isn't it!?

goldencrane3 said:We all try our best to just enjoy life. Sometimes I even briefly forget he’s sick, and then there he is—it's like he's grown wings, so happy and fighting so hard to get stronger.
Now that my boyfriend and I are finally living alone in our own apartment, we're celebrating our first Christmas together, but then it hits me... Dad might not be here for it...
Sometimes, when I’m feeling truly down and miserable, I find myself wondering how I’ll even manage to get through the funeral. Isn't it horrific that such thoughts even cross my mind!?

It isn't horrific. But if I can tell you anything based on what I went through, it’s that nothing ever goes the way you imagine it will, from start to finish. Given everything, things turned out as well as they possibly could have.
Look, the rough patch with my mom lasted a really long time. She was practically bedridden for at least a year. The day she passed away didn't feel any different from any other day over that last year... she just faded away...
...don't dwell on it. We're all here now, but tomorrow none of us are guaranteed to be. So many people came to say their goodbyes to my mom, only to pass away themselves before she did. That's just life. It is completely normal to celebrate Christmas with your boyfriend; who knows if any of us will still be around by then, or if we'll all still be here.
Surviving the funeral was much easier than living through two and a half years of my mother's agony. Life is the hard part; dying is the easy part.

Angela Wright said:No, but what I can tell you from experience is that nothing went at all how I imagined it would, from start to finish. Given the circumstances, it turned out as well as it possibly could have...

Surviving the funeral was much easier than living through my mother's two-and-a-half-year agony. Life is hard; dying is easy.

Hi everyone!

My dad was diagnosed and had surgery for glioblastoma IV in November of last year.
Since then, I've been a regular reader of this section of the forum.🙂

I've learned two vital things (and really taken them to heart)—you have to take life one day at a time and cherish every single "good" moment.
I owe a huge thanks to Angela Wright for that—and to everyone else who has posted here.

Thanks for everything... see you in the threads. 😉

Angela Wright said:Not really—but honestly, based on what I went through, nothing actually turned out the way I imagined it would, from start to finish. Given everything we were dealing with, things ended up turning out as well as they possibly could have.
Look, the rough patch with my mom lasted a long time. She was basically bedridden for at least a year. The day she passed away didn't even feel different from any other day in that final year... she just kind of faded out...
...don't dwell on it—we're all here now, but tomorrow who knows? So many people came to say goodbye to my mom, only to pass away themselves before she did. That's just life. It’s totally normal to be excited about spending Christmas with your boyfriend; as for who will still be around by then, maybe none of us will, or maybe we'll all still be here.
Getting through the funeral was way easier than watching my mom go through two and a half years of agony. Life is hard; dying is the easy part.

Thanks. I try to stay positive, and I really do work at keeping it that way. For me, the absolute worst part was finding out about the diagnosis—everything after that felt easier, at least in my experience.
Tomorrow I'm heading over to help my sister and parents clear out the apartment—I can already see my dad stubbornly trying to get involved in every little thing. 🤣 Man, that stubbornness and persistence is probably what helped him fight the illness, too. I don't know if I would've been that strong if the same thing happened to me.

What hurts me the most is this overwhelming sense of helplessness—dealing with situations like my dad’s, where even the briefest little chat feels like an exhausting struggle for him. 😢 And unfortunately, everything just boils down to waiting... which is incredibly, incredibly hard. 😢

He’s looking so thin now (I think he’s lost close to 65 pounds since he got sick around New Year's, and we can't even weigh him anymore because he’s strictly bedridden), and the swelling around his liver has become visible. 😢 A few times a day, we sit him up for just a few minutes so he can have some soup—that’s really all he’s eating—along with a bit of fruit. Today, the second he took the first spoonful of soup, he started coughing and could barely manage a tiny bite. I'm really worried about that fluid buildup around his liver; it's tough knowing what to do when a patient is at home and completely immobile. Our family doctor basically just confirmed there's swelling and fluid around the liver, then stopped the IV fluids he had been receiving for a few days about two weeks ago. I’m terrified that the fluid is suffocating him, or that it might have migrated to his lungs, which might be why he's coughing. When he's lying flat, he doesn't cough, but his breathing is shallow until he falls asleep, and then it seems to normalize. The hiccups have been his "constant companion" ever since his surgery back in July when they removed his stomach. He’s hiccuping almost constantly, even while he sleeps. 😢

For now, we’re managing to prevent any skin issues on his back; as soon as we see even a hint of redness, we apply some Sudokrem (we have it here in the Midwest, though I'm not sure if you can find it easily elsewhere) and it usually clears up within a few hours. We massage him very gently whenever we can, because he gets upset if the contact feels too uncomfortable. 😢

We are all going through different stages of this fight—whether it's for ourselves or for our loved ones facing these heavy illnesses—and all I can really do is wish everyone strength and patience.

Edward Grant3, I'm so sorry you guys are going through this too. I totally get what you mean—that feeling of being helpless just rips your heart out. But honestly, regardless of everything, I know your dad is proud of how much you're stepping up and showing him love. These diseases are absolute curses for taking our loved ones away. Hang in there and stay strong. Wishing you all the best in this fight, and praying your dad finds some relief from the pain and suffering.

Linda Patel21 said:Sofi, I am so incredibly sorry that you guys are going through this right now. I completely agree with you—that feeling of being totally helpless... it’s just heartbreaking. It really tears at your soul. But honestly, despite how hard it all is, I truly believe your dad is so proud of you both for stepping up like this and showing him just how much he is loved. These diseases are absolute curses, taking our loved ones away from us when we aren't ready. Please, stay strong. I'm rooting for you in this fight, and I'm praying your dad finds some relief from the pain and suffering.

🙂 🙂 🙂