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

Hello. My mother (63 years old) is currently battling lung cancer that has unfortunately metastasized to her bones. She has completed three cycles of chemotherapy, and while we saw some success with the tumor shrinking, things took a turn when she developed pneumonia. She spent a week hospitalized, but she’s been discharged now with instructions to use supplemental oxygen (4L for 18 hours a day) because her levels have dropped significantly. To give you an idea of the situation, when she isn't using the oxygen, the pulse oximeter shows readings as low as 80—usually hovering somewhere between 80 and 85—yet strangely, she doesn't even seem to notice the dip; she isn't gasping for air or struggling heavily to breathe.
When she uses the nasal cannulas, her levels quickly climb back above 90.
However, here is the frustrating part: despite receiving continuous oxygen throughout the night, she often wakes up with a reading of 80, sometimes even lower. It feels like a losing battle because during the day, while she is using the oxygen, she stays consistently above 90, but the overnight drop is baffling. Does anyone know why her levels would plummet like this even though she is actively receiving oxygen? Is there a physiological reason for this phenomenon that I might be missing?
I can't help but wonder if she might be mouth-breathing in her sleep, which would prevent the oxygen from properly entering through the nose—I'm not sure if that's a valid theory. Perhaps she should be using an oxygen mask at night instead of those small nasal tubes? If it actually makes a difference, is there a significant clinical distinction between the full masks people often wear and the nasal cannulas?

Carl Doyle92 said:Hi everyone. My mother (63 years old) has lung cancer that has metastasized to her bones. She just finished three cycles of chemotherapy, which actually shrank the tumor, but then she developed pneumonia and spent a week in the hospital. She’s been discharged now, but she needs supplemental oxygen—4L for about 18 hours a day—because her levels are quite low. When she isn't using the oxygen via the finger monitor, her saturation hits as low as 80, usually hovering between 80 and 85, though she doesn't even seem to feel the shortness of breath or struggle much.
As soon as she uses those nasal cannulas, it jumps back up above 90.
The thing is, even when she’s on oxygen all night long, she’ll wake up in the morning with a reading of 80, sometimes even lower, despite having constant supply throughout the night. During the day, whenever she's using the oxygen, she stays above 90. Why would her levels drop like that overnight even while receiving oxygen? Does anyone know if there's a reason for this?
I can't help but wonder if she's breathing through her mouth while sleeping, meaning the oxygen isn't getting into her nose effectively; I'm not sure if that matters. Perhaps she should be using one of those masks instead of the nasal tubes at night—if that even makes a difference—and is there any real distinction between the standard masks people wear and these little nasal cannulas?

It is entirely possible that she is mouth-breathing during sleep, which would cause the saturation to dip. However, even if she breathes through her nose while receiving oxygen, it is quite common for saturation levels to drop slightly during sleep. Does her saturation level jump back above 90 immediately upon waking?

Nasal masks are typically utilized when someone requires a higher flow rate, usually anything exceeding 6L per minute, but I would strongly suggest you bring this specific concern to her pulmonologist.

ruggedgardener74 said:It’s pneumonia—the intensive care kind. They have him on three different antibiotics plus a transfusion and all sorts of things. But nobody is telling us if there's actually a chance he pulls through... the situation is grim.

My father (83) ended up in the hospital
They suspected pneumonia
But apparently, it wasn't that
They performed a bronchoscopy
And once again, I don't even know what the results showed
The doctor isn't being optimistic
But honestly, the biggest issue for me is this hospital where he's staying. They just aren't good... I have no idea what his current treatment plan is, but mostly they don't even react anymore; he just sleeps—likely under sedation—and we couldn't even wake him today
Tomorrow, I'm going to try and track down some information through his LOM records and some acquaintances
I would much rather have him transferred somewhere else, or placed under hospice care (if they truly have no more solutions), rather than just having him lie there
I don't have any experience with this sort of thing, so any advice, ideas... or even just a bit of comfort 😢 would be welcome...

mistyjackal842 said:The waiting isn't even the real issue—it's that blatant lack of desire to actually help our elderly. It feels as though they’ve just written them off entirely. Some departments handle bedridden patients with dignity, sure, but others... they just don't care....

That's exactly it. 😢
It's like they've already crossed them off the list...
I mean, eighty-three is an age, certainly... but it's not one hundred and three...

What really gets to me is this crushing sense of helplessness I can't seem to shake...

Carl Doyle92 said:Hi everyone. My mom (63 years old) has lung cancer that has metastasized to her bones. She finished three cycles of chemo, which actually shrank the tumor, but then she developed pneumonia and spent a week in the hospital. She’s been discharged now, but she has to use supplemental oxygen (4L for 18 hours a day) because her levels are too low. When she isn't using the oxygen, the pulse oximeter shows her levels dropping to 80, or sometimes even lower—usually hovering between 80 and 85. The strange thing is, she doesn't even seem to feel it; she isn't gasping for air or struggling to breathe.
As soon as she puts those nasal cannulas in, her levels jump back above 90.
Now, here’s the issue: she uses oxygen all night long, yet she wakes up in the morning with a reading of 80, sometimes even lower. During the day, whenever she uses the oxygen, she stays above 90. Why is her oxygen dropping overnight despite being on the machine? Does anyone know if there's a reason for this?
I was wondering if maybe she’s breathing through her mouth at night, so the oxygen isn't getting into her nose properly? I don't know if that matters. Maybe she should be using one of those masks instead of the nasal tubes, if that even makes a difference. Is there any real distinction between the masks people usually wear and these little nasal tubes?

She probably has sleep apnea (where you stop breathing while asleep). They might want to put her on a CPAP machine at night along with the oxygen—that's the mask that provides both the oxygen and the pressure needed to help her breathe.

My dad passed away yesterday, exactly six months after his diagnosis.

He’s finally at peace now...
The last few days were just incredibly hard and exhausting...

shadowbison75 said:My dad passed away yesterday, exactly six months after his diagnosis.

He finally found his peace...
His last few days were quite difficult and heavy.

My deepest condolences. I think I know how you feel, so please hang in there, and maybe find a peaceful way to say goodbye. I suppose time doesn't erase the memory, but it does help heal the wounds...

Hello everyone!
I never imagined I’d be posting here one day—life really has a way of throwing curveballs when you least expect them.
Here’s the situation: my mother-in-law just underwent surgery for a massive malignant intestinal tumor, and unfortunately, it has already metastasized to her liver and lungs. She’s had to get an ostomy bag installed—you know, the kind that needs regular changing. We’re still waiting on all the specific details, but the prognosis isn't looking great right now. She’s still at the hospital; they actually moved her from the ICU to the abdominal surgery ward yesterday. For now, she’s mostly getting nutrition through a feeding tube. What we're trying to figure out is if anyone here has experience hiring caregivers, as she’s going to need 24/7 assistance. Also, if any of you have dealt with a similar situation in your own family, I would truly appreciate it if you could share your story.
If anyone can recommend a professional, highly experienced caregiver, please send me a private message.
Thank you all so much in advance!

If someone is dealing with a nasogastric tube, honestly, you’ll struggle to find anyone who actually knows how to manage it properly. An older sister mentioned she knew how to handle the feeding part, but the real issue is that the tube just keeps shifting—it feels too short. At the nursing home, they don't really care if the tube has moved out of place or anything. They just feed through it and call it a day. Usually, it's just the aides doing it because there aren't enough nurses on staff. And having someone conscious while they have that tube? It’s just awful. It was clearly bothering him. In my opinion, those tubes should only be used in a hospital setting, where you actually have skilled nurses who know what they're doing. I've personally seen nurses in the hospital swap them out all the time to make sure everything is right. There was even this one man near my dad who pulled his out himself, and the staff fixed it immediately. While he was still at home for those first two days, he was getting IV fluids via home health care. Palliative care wouldn't come out to us, so everything was handed off to home health. But during the summer, they are spread so thin because everyone is on vacation. So, the whole situation is just... nothing. In other parts of the world, there are hospices where people are moved to immediately after leaving the hospital. Here, palliative facilities are incredibly rare, and they won't transfer you if you're outside of the Washington, D.C. area. They claim it's strictly for their own county. I say "palliative" because, in that facility, nobody except my dad was actually being fed through a tube. There was one man in that very same room, in pretty bad shape, who was only being given water through his tube before he passed. You just have to figure it out however you can, based on what you know. You have to be ready for anything.

I’ve had some really kind, young nurses come by through home health care. To be honest, I mostly needed them to help manage my dad's agitation, since I’ve been the one washing his hair myself this past year, and even then, they always seem to be in such a rush. But when it comes to managing things like feeding tubes, catheters, or stomas... well, they often lack experience. Some might know the basics, but they aren't quite on the same level as hospital nurses. Home care feels more like assistance for bathing while someone can still make it to the bathroom. I honestly think a residential facility might be your only real option. It’s just incredibly expensive, and you never truly know how much expertise they actually have there. If you ask, they’ll always claim they can handle everything. You might want to look into the Medisal facility in the suburbs. Even though they don't have an elevator, I've read that they have great staff for patients who are heavy or immobile. When I checked with them last year, they said they were full. Based on the photos, though, it looks quite clinical, almost like a hospital.

Thanks so much for all your replies! I just got off the phone with the doctor—he mentioned that while he'll need to have a stoma for life, he'll be able to eat everything normally just like the rest of the family, so clearly the feeding tube is going away. He did say the tumor was at an advanced stage, but we’re waiting on the official results so the oncologist can figure out the next steps. Until then, we're essentially in limbo. According to him, he should probably stay in the hospital for at least another week.
I actually found a Facebook group called "Elderly and Disability Care"—they post ads there for caregivers and nurses, as well as people looking for help.

It’s definitely better if you can manage without a feeding tube. As far as ostomy supplies go, there's actually a Stoma Medical shop available. They used to be at the Remiza location, but I think they might have moved. You should probably check online. I believe there's a local Stoma Association that could potentially send a specialist to your house once you're back home. And regardless, you really ought to look into getting a primary care doctor for home health services. Now, the big question is whether that specific nurse will be experienced enough. We worked with Dominic. Usually, if they aren't sure, they'll send someone who actually knows what they're doing. That’s how it worked for my dad when he was dealing with IV infusions while still at home. Plus, home health aides can come to you. Typically, if the doctor doesn't come out, they'll refer you to home health, and then that professional can assess the need for ongoing care. You also have Preradović's home care options—maybe try checking who has nurses available, because everyone is usually on vacation during the summer. And honestly, regarding those classified ads you mentioned, you could get anyone responding to those, so please, just be really careful. I think you're entitled to receive ostomy bags via mail order, so maybe ask the folks at Stoma Medical. They are very kind people. You should also be able to get diapers delivered through that same system.

mistyjackal842 said:It’s definitely better if you can manage without a feeding tube. As for ostomy supplies, there’s a specialized shop called Stoma Medical—they used to be over at the Remiza area, but I think they’ve moved, so maybe check online. Also, I believe there’s a local Stoma Association that might be able to send a specialist to your house once you're back. Regardless, make sure to ask your primary care doctor about home health care services. The big question is whether that specific nurse will be trained for this. We worked with Dominic, and usually, if they aren't sure, they just send someone who actually knows what they're doing. That’s how it worked for me when my dad needed IV infusions at home. You can also get visiting nurses through your doctor; typically, the GP refers you to home health, and then they assess what kind of care is actually needed. There’s also Preradović's home care service—try checking who has available nurses, though keep in mind everyone is on vacation during the summer. And honestly, be careful with those random ads you mentioned; anyone could respond to those. Just stay vigilant. I'm pretty sure you're entitled to ostomy bags via mail order, so give Stoma Medical a call. They’re really lovely people. You should also be covered for adult diapers through mail order too.

Thank you so much—this is all incredibly helpful, and we’re going to start looking into everything right away. Honestly, I had some guy email me recently acting like an expert because his wife used to "care for politicians," and he actually tried to lecture me on communication etiquette—saying I should call instead of emailing! I just told him, "Look, we're the ones paying, so we decide how we communicate. Goodbye."🙄🙄🙄

mistyjackal842 said:I’ve tried just about everything. I spent a long time caring for a bedridden patient—it changes you. Regarding those lanolin creams, I actually dug through some medical articles online just to figure out what was what. One lady who was looking after her immobile mom had a GP suggest Cicratidin hyaluronic cream. It didn't really work for my dad, though—everything is so different from person to person. Sometimes I’d layer it with Mirobact ointment and gauze to keep things from getting infected. We were mostly dealing with surface wounds. They healed a bit easier on his legs since there wasn't constant pressure; he even grew a new toenail once the old one fell off. For that, I started with Mirobact and used gauze exactly how the doctor told me. I’ve used Byvacin ointment too, which is an antibiotic.

It is incredibly hard to find the right cream—you wouldn't believe how much it varies by person. We ended up sticking with propolis-based creams. Mistyjackal842, thank you so much for the advice; you've been a huge help.

My heart goes out to everyone who has lost a loved one, and sending strength to those still in the fight.

I have a question, but I’m not entirely sure if it fits this thread. If I’m totally in the wrong place, I’d appreciate it if a moderator could point me in the right direction.

Basically, I’m an oncology patient, and ever since my diagnosis, I’ve been reacting to pain with a lot of anxiety—even in parts of my body that aren't related to my tumor. Because of that, I was wondering if anyone here dealing with sarcoma (soft tissue?) has experienced pain specifically in their leg. What kind of pain did the sarcoma cause for you there?

Thanks for understanding and for any insight you can share.

Hey everyone. I have a question that’s really weighing on me... It’s about my mom (73 years old). During a neck ultrasound, they found changes in three lymph nodes. Two aren't too concerning, but the third one on the right side is 17×13×13mm. We did a biopsy immediately after, and unfortunately, it was confirmed as a metastasis. She had a head CT and a Thorax scan. The head CT came back clear. The Thorax results will be ready Monday. Since she’s having massive trouble swallowing—which is actually why we started all these tests—a literal piece of cooked chicken got stuck in her esophagus today. It just wouldn't budge, so we rushed her to the ER. They ended up doing the endoscopy that was originally scheduled for next week. The findings were okay, except for some slight narrowing at the bottom of the esophagus. A CT abdomen is scheduled for Tuesday. I am losing my mind with all this information. I don't even know what to think anymore. A long time ago, I used to hang out on this Reddit just for fun (didi1), but unfortunately, I can't get into my old profile, though I'd love to. Now, I'm back for much more serious reasons. I’d post the results for you guys to look at, but I don't even know how to do that anymore. Anyway, given an obvious metastasis in a neck lymph node, where would the primary cancer likely be? That's the big question. Sorry if this post is a mess, I just don't know which way is up right now. Bye.

My dad also struggled with swallowing food (and later liquids), but he had a whole range of other symptoms too... and at his first ENT appointment, they confirmed oropharyngeal cancer (base of the tongue) and a metastasis in one lymph node.

But since they ran a CT abdomen, they definitely would have spotted that cancer (tongue, oral cavity, etc.) right away, for example...

That’s my take on it too.
I am so sorry about your dad...

feralgardener362 said:I have a question, though I'm not entirely sure if it fits this specific thread. If I've gone off-topic, I’d appreciate it if a moderator could point me in the right direction.

Basically, I'm an oncology patient, and ever since my diagnosis, I've found myself reacting to pain with a lot of anxiety—even in parts of my body that aren't related to my tumor. Because of that, I was wondering if anyone here has dealt with soft tissue sarcoma in their leg? What kind of pain did it cause you?

Thanks so much for understanding and for any answers you can provide.

Pain from a sarcoma in the leg typically wouldn't spread to other areas, as there isn't really a mechanism for that to happen. It's very possible that what you're feeling is just a physical manifestation of stress and fear. However, if you notice pain consistently appearing in the exact same spot, it wouldn't hurt to get some imaging done just to rule out any other underlying causes, such as the unfortunate possibility of the disease spreading.
If you want to learn more about sarcomas, it might be helpful to check out https://www.oncology.org/soft-tissue-sarcoma

The swallowing part is just awful. My dad had a really hard time swallowing liquids too. He could manage soft foods, though. It's funny because my mom, who was younger, could swallow almost anything—even just half a Klavocin pill. Last year, I actually had to grind up Dad's antibiotic and mix it with some yogurt just to get him to take it. I guess I don't quite understand why swallowing became such a struggle for him.