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

Angela Wright said:Honey, please accept my deepest condolences. I’ve dealt with plenty of heavy losses in my life, but I honestly can't even begin to fathom how devastating it is to lose someone so young and so suddenly... 😢

Sepsis happens when bacteria hit the bloodstream, and it's actually not that uncommon when you're dealing with a bacterial infection that isn't getting properly managed.

Just thinking out loud here—and I'm totally speculating based on what you shared—but it's possible your husband was carrying the H. pylori bacteria for years, which eventually triggered the stomach cancer and then spread to his lungs, ultimately leading to sepsis...
Here’s a study that discusses how this specific bacteria can cause issues in the lungs too http://www.ncbi.nlm.nih.gov/pubmed/12508341
Did you ever get the results from his autopsy?

In any case, if I were you, I'd definitely suggest getting tested for that bacteria yourself. It's a super simple breath test. If you have it, you really need to treat it before it starts causing trouble for you, since it's one of those primary triggers for gastric tumors...

Yeah, about two years ago he started having some stomach issues, so he went in for an endoscopy and they found he had gastritis and H. pylori, but he finished the treatment and it cleared up... when the stomach problems flared back up, he was taking Controloc tablets prescribed by his doctor... but it wasn't like intense pain or anything, and let's be real, who doesn't deal with gastritis at some point? The final report listed pneumonia, a pulmonary embolism, sepsis, and finally cardiac arrest... I keep wondering why they didn't drain that fluid, the ascites... because honestly, I can't help but feel like that's what finally took him out...

lonesailor36 said:Yeah, about two years ago he dealt with some stomach issues, so he went in for a gastroscopy. They diagnosed him with gastritis and H. pylori, but he finished his treatment and it was gone. When those stomach problems flared up again, he just took the Nexium tablets his doctor prescribed... but honestly, it wasn't intense pain, and if I'm being real, who doesn't have gastritis at some point? His actual diagnosis was pneumonia, pulmonary embolism, sepsis, and finally cardiac arrest. I can't help but wonder why they didn't drain that fluid—the ascites. I can't shake this feeling that that's what ultimately got him.

H. pylori is an incredibly stubborn bacterium. It loves to go into hiding after a round of antibiotics, just waiting for the right conditions to start multiplying all over again. You really ought to follow up with repeated testing after treatment to make sure it’s actually been wiped out. If things were missed here, it might be because someone failed to point that out when they should have.
As for ascites, performing a puncture often just triggers the body to produce even more fluid, leading to a rapid recurrence shortly after a brief period of improvement. Initially, you try to manage it with diuretics like Lasix or Furosemide, but a puncture is really the absolute last resort for palliative care.
I am so incredibly sorry. Based on everything you've shared, it truly feels like a perfect storm of medical complications within his body. I know when something like this happens—when a young, healthy person is suddenly taken away like this—it is devastating. It’s hard to process, and there's this overwhelming urge to find someone to blame just to make sense of the senselessness. But the reality is that we are incredibly fragile, especially when faced with circumstances like the ones your husband encountered. 😢
I hope you can eventually find some peace and continue moving forward, carrying his love and his memory in your heart. 🙂

dskari said:I’m not entirely sure if I’m asking this in the right spot, so apologies if I am. Does anyone here have actual experience with hyperbaric chambers? From what I’ve been reading, it seems promising, but I don't know a single person nearby who has actually tried it. Thanks.

If I recall correctly, there’s already a thread about hyperbaric chambers.
The therapy itself has proven to be quite effective for a variety of conditions—cardiovascular disease, for instance. However, I’m a bit skeptical about these "wellness" versions you see advertised; I know there can be specific contraindications for these types of treatments.

So, my sister has officially entered her second year fighting breast cancer. After surgery—and maybe even before that—it spread to her bones (femur), not to mention the lymph nodes are involved too.

Things actually looked significantly better after her second round of chemo. Ultrasounds, CT scans, markers—everything pointed toward improvement. We were feeling pretty good about it, but then a few months later, a lymph node in her neck flared up. They operated, and turns out, it was a metastasis. A follow-up PET-CT showed she was still doing better than she was a year ago (except for that neck node), which was back in September.

She started taking Xeloda and almost immediately developed this heavy cough. We figured it was just a side effect, but after more testing, we suddenly found out there are metastases in her liver and lungs. It’s been only three months since the last PET-CT, where everything looked clear.

Then I remembered she mentioned during that PET-CT that they were rushing her through the process. She was supposed to slowly drink the contrast over half an hour, but she said they were in such a hurry that she had to chug the rest of it quickly. Who knows if it even distributed properly through her system. Can you even trust results like that?

And now what? What do we do about the lungs and the liver? Is this it? Just sit around and cry? She starts a new round of chemo in 14 days—Taxol + Gemzar. Will that work? Is 14 days too long to wait? It feels like we're always waiting for something.

The whole family is just devastated; we've hit rock bottom. My dad and I don't even know what to say to her, let alone to each other. Nobody has the strength left to play cheerleader or hold onto hope. Plenty of doctors claim modern medicine has enough tools to keep people going for a long time, but her actual oncologists look genuinely worried. I'm preparing to go down there by myself to ask them straight up. I need them to either give me some comfort or just bury me with the truth, if I can find the nerve. I'm afraid I'll just freeze up and won't be able to even listen, let alone ask anything.

I pop onto this forum every now and then since this all started. Honestly, guys, what are you all going through? How do you manage? How am I going to?

Anyway, that's where things stand. I've vented enough. I doubt I've brought anyone any joy today.

Wishing everyone luck.

Angela Wright said:Helicobacter is one incredibly stubborn little bacterium that loves nothing more than to just hide out after you finish an antibiotic course, waiting for the perfect moment to start multiplying all over again once conditions shift... Honestly, you really ought to run follow-up tests several times after treatment just to make sure it’s actually been wiped out completely. If things went sideways, it might just be because someone failed to point out that necessity in the first place.
As for ascites, performing a puncture often just triggers even more fluid buildup, which can spread incredibly fast right after you see a brief moment of improvement. At first, they try to manage it and keep things stable using diuretics—like Lasix or Furside, for example—but a puncture is really just a last-resort palliative move.
I am just so incredibly sorry... looking at everything you've shared, it really does seem like a perfect storm of unfortunate circumstances happening inside his body. I know when something like this hits—when a guy who was perfectly healthy just yesterday leaves us this soon—it’s just so damn hard to wrap your head around or accept. You get this overwhelming urge to find someone to blame, to point a finger at someone just to make the whole mess feel a little more manageable... but the truth is, we're all just so fragile and small when life throws something like this at us, much like what seems to have happened with your husband. 😢
I truly hope you can somehow find some peace within yourself and keep moving forward, carrying that love and those memories close to your heart. 🙂

Thanks so much for getting back to me!
Yeah, honestly, the sheer speed at which everything was spiraling was just unbelievable... and it's probably exactly like you said, just a massive chain of unfortunate events... I was mainly wondering about the water situation, you know, the ascites, since they were giving him those pills to help him shed the fluid while he was in the hospital, and I couldn't quite wrap my head around why they weren't just draining it, but it makes a lot more sense now that you've explained it... thank you!

goldensailor0 said:My friends, look at everything you’re going through. I honestly don't know how you do it, or how I ever will...

We carry this incredible strength inside us without even realizing it. No matter how fragile or small we feel, humans are essentially creatures capable of pushing themselves to 200%—surpassing what we once thought was our absolute limit.
You give it everything you've got, and then... well, you just have to deal with whatever happens. It’s all down to luck and how things fall into place, unfortunately. The only thing we actually have control over is our own mindset—how we choose to process things and how we handle the hand we're dealt.
Look, the situation isn't good; it’s highly invasive and aggressive. You don't need a medical degree to see that, and you probably already know it by now. Don't go expecting your doctor to drop some profound revelation on you; you might just end up sitting there alone with your own thoughts, waiting for them to provide some kind of official confirmation of what you already know.

Definitely check back in after you've talked to the doctors.

Amanda Wells75 said:I’ve spent months lurking on this forum whenever I could find a spare second between looking after my little one, and during that first stretch, I noticed posts from Dine9. She fought ovarian cancer for so many years before finally losing the battle. Even while facing such a brutal diagnosis, she remained incredibly optimistic, constantly offering support and faith to everyone else. It’s hard to wrap my head around the fact that even at the very end of her journey, she was still looking out for people here and making sure we all knew she was leaving us. I felt such a heavy sense of grief reading that she’s gone... .

Dine9 was a brilliant soul. She possessed such profound wisdom through her own suffering that if you believe difficult life experiences are meant to be stepping stones in spiritual evolution, she was definitely standing at the summit.
She had dealt with ovarian cancer and actually reached remission once, but radiation damage to her bladder eventually triggered a new cancer there. That’s what actually took her. I think she fought for about 13 years from that initial diagnosis until the very end, including one solid period of remission. She outlived every single girl she met at the start of her fight who had been given that same ovarian cancer diagnosis. She walked around practically hollowed out, with lungs like Swiss cheese, yet she spent her time lifting up others who were far less sick than she was. Honestly, if she had made it to her next transfusion, she might have had a bit more time, because her blood counts had plummeted. She probably would have squeezed out a little more time 😢
I still remember our last phone call. I was venting to her about my own relationship disasters, and she was the one comforting me. Afterward, I felt like such a jerk, so I called to apologize for dumping my problems on her—and she actually got mad at me! She told me that being sick doesn't make my problems any less significant than hers...😁 She told me she only feared one thing: who on earth was going to pay off her bank loan after she passed. A woman missing half her insides, with lungs functioning at maybe a quarter capacity—she wasn't afraid of death, she was afraid of those damn banks. 😁 That was my Diana. Thank you for reminding me of her today. She always finds a way to reach out and remind me of her story right when I need hope, comfort, or above all, strength. Today, she did it again through you. I’m going to light a candle for her and have a cup of coffee with her in my thoughts.

..after talking to the doctor:

Just like I figured—I got there, panicked, started stuttering, and completely blanked on what I even wanted to say..

The doctor basically says this is just how it goes now. How? Well, we do chemo, that helps, then the disease spreads again, so we do it all over again, and again, and again..
So, yeah, I'm thrilled about how many times the word "again" popped up. Just thrilled. Or maybe just slightly less miserable.

Angela Wright said:Diana was such an incredible person...

Diana sounds like someone out of a fairy tale; it’s hard to believe people like that actually exist. How am I supposed to help my sister find a more positive outlook? Trying to lead by example won't work—I'm healthy, so it's easy for me. Besides, I'm not exactly the "go-getter" type.

And what does "positive attitude" even mean? Thinking happy thoughts? Believing things will get better? That's stupid and boring. Things aren't going to get better. To me, having a positive attitude just means accepting that things are okay right now, because they won't get any better than this. We'll just keep moving through it, one thing after another, again and again..

Just some thoughts. These are mostly rhetorical questions, but maybe someone feels like chiming in to make surviving this a little easier...

Good luck!

Diana lived life one day at a time. She was present in the moment, treating her illness like any other hurdle to overcome—something she dealt with, but never allowed to become the sun that her entire universe orbited around. It was a major issue, sure, but a secondary one. She refused to let the diagnosis hijack her existence until her very last breath. Look, nobody can force a sense of optimism onto someone else; that shift has to come from within. A real positive attitude isn't some delusional "everything will be fine" mantra; it’s more like saying, "I’m going to do everything in my power to make things better, and whatever happens, happens, so be it." You have to accept your reality for what it is and just live through it, day by day. Anyone who truly masters that mindset is a lucky person.

Amanda Wells75 said:Angela Wright, I am so incredibly sorry to hear that your mother lost her battle with the illness, but as you noted, things were caught quite late. I’m honestly terrified because my own mother might be facing a similar situation; her diagnosis also came in at stage IIIC.
I’m at a loss for words, other than hoping that medical science has advanced enough to put my mom's condition into remission—just enough to give her body a chance to recover and, more importantly, to give her some quality time to enjoy her grandkids and being with those she loves most. Did your mother fight the disease for a long time?

Unfortunately, ovarian cancer is a remarkably insidious disease that rarely shows any symptoms in its early stages.
My mother was also diagnosed at stage IIIc, and it only came to light after she started losing her appetite for food.
She actually lived for two years following the diagnosis, despite doctors giving her a prognosis of only six months.
If her body had been able to withstand that last surgery, I truly believe she would have had a few more years in her. One has to hold onto hope until the very last day.

goldensailor0, I know this is incredibly hard on you because it’s just as heavy for me. But honestly? I truly believe that the doctors and modern medicine will get my mom into remission, and she’ll be here with us for years to come. And I really hope that’s the case for your sister, too.
I know exactly what you're going through—that weird, messy mix of sadness and grief clashing with this sudden burst of happiness whenever a test result shows some kind of "improvement." You have to hold onto that faith. You have to do everything you can to be there for your sister, because she’s going to feel it if you start losing hope. As for me, I’m just taking it one day at a time. No big plans, nothing fancy. Just spending as much time as possible with my mom between managing a little kid, work... the usual stuff. We celebrate every single time a marker drops, and we try not to talk about the illness every single time we see each other. Everyone is different. Every body reacts to therapy and the disease in its own way, but you just have to stay positive. Every day is a new day, and every day brings new hope...

Diana was such an incredible person; you could really feel it through her posts. There was this one specific time she posted where I just felt this overwhelming wave of sadness. She wrote about how her lymph nodes were swollen all the way from her pelvis up to her neck, but even then, she insisted she wasn't backing down—that she still had the strength to fight. That was toward the end of 2008, and then on January 29, 2009, she passed away. That date just burned itself into my mind; I saw it once and I’ll never forget it.
The way you described her illness makes it clear she went through hell with the chemo and the surgeries. It couldn't have been easy, yet she never wavered, which honestly makes sense when you consider she fought this battle for thirteen years. I just can't wrap my head around the fact that even while dealing with all of this, she was worrying about her credit score or who would pay it off... she was busy being the rock for people who were mentally breaking down, all while she was so incredibly sick herself. It’s hard to believe she lived through all that without half an organ, struggling with lungs that were so weak...
What stage was the cancer at when they first found it?
I have to admit, I've never had someone from a forum—someone I never even met in person—stick in my memory like this. I find myself thinking about her often, almost as if we actually knew each other.
I think it’s because she just had so much positive energy and such a genuine love for life...
Why didn't she go for the blood transfusion? Was she unable to make it, or did she just not want to? It feels so unlike Diana to refuse, unless maybe she was just completely exhausted by everything.

Amanda Miller69 said:Unfortunately, ovarian cancer is such a sneaky disease. It basically shows zero symptoms in those early stages.
My mom was diagnosed at stage IIIc too, and it only happened once she started losing her appetite and feeling sick from food.
She’s actually survived two years since the diagnosis, even though doctors told us she only had six months left.
If her body could have just held up after that last surgery, I truly believe she would have made it a few more years. You just have to keep hoping until the very end.

It’ll be one year since my mom got her diagnosis this coming month. So far, her markers are dropping, which is a good sign. I'm really hoping they can get the cancer into remission so she can finally get some time to recover her strength and, you know, just live a normal life again.
Hope and faith are the last things to go...

I’ve been lurking here for quite a while now. If I can even call it that—not that I should brag, since my story actually ended on a high note—but I spent months living in this constant loop of shock, fear, and desperate hope. I came to these forums looking for any shred of an answer to the terrors keeping me up at night.
To give you the full picture: my daughter (she's 37) dealt with what looked like a breast infection. After some antibiotics, things seemed to be looking up according to her doctor's ultrasound, showing nothing but benign changes. But there was this massive lump that just wouldn't budge, so she took matters into her own hands and pushed for a puncture. That spiraled into a biopsy, a mammogram, a CT scan, and then two more biopsies at a different facility. The results were all over the place—ranging from inflammation to carcinoma in situ. Once the final diagnosis hit, she had to undergo a mastectomy because the tumor was just too large to save the breast.
Thankfully, the pathology confirmed it was carcinoma in situ, and a very rare type at that—only about 1% of all breast cancers. Since the lymph nodes were clear, she didn't need any extra treatment.
Now, we’re just doing check-ups twice a year.
So, why am I dumping all this on you?
This whole ordeal—this absolute gauntlet of uncertainty and dread—doesn't just affect the patient; it leaves a permanent mark on the entire family. And look, the doctors were great. Truly. They were professional, kind, and attentive. But we desperately needed psychological support, and we had nowhere to turn. The oncology department at the Mayo Clinic is top-tier, and the doctors are incredibly human, but there was nobody there to help us actually process the fear.
I’ve heard whispers about a psychologist who steps in when needed and is genuinely dedicated to the cause, and apparently, there are plans to open a psycho-oncology department, but progress is moving at a snail's pace.
My question is: is there anything we, as family members—and I'm sure patients feel this too—can actually do to push for this? I know firsthand how much people truly need that mental health support.

Amanda Wells75 said:Diana was truly an exceptional soul; you could feel it in everything she posted. There was this one specific update that really hit me hard—she mentioned having positive lymph nodes stretched from her pelvis all the way up to her neck, yet she insisted she wasn't backing down and still had the strength to fight. That was toward the end of 2008, and then, on January 29, 2009, she passed away. That date burned itself into my mind; I saw it just once and I'll never forget it.
The way you described her illness makes it clear she went through hell with the chemo and surgeries. It couldn't have been easy, yet she refused to give up, which is backed up by the fact that she fought this battle for thirteen years. I find it hard to wrap my head around the fact that, even while battling this, she was worrying about her credit score or who would pay it back... she was busy being a pillar of support for people who were mentally breaking down, all while she herself was deathly ill. I can't believe she was living with half her insides gone and lungs that weak...
At what stage was her cancer originally detected?
I have to admit, I’ve never had someone from an online forum—someone I never even met in person—carve such a permanent space in my memory. I find myself thinking about her often, almost as if we were old friends.
I think I attribute that to the sheer amount of positive energy she radiated and how much she genuinely loved life...
Why didn't she go in for the blood transfusion? Did she not make it in time, or did she just decide against it? It feels out of character for Diana not to want it, unless she was just completely exhausted by it all.

Honestly, I don't recall the specifics of her diagnosis anymore; I just remember she developed that bladder cancer as a result of the radiation from her first diagnosis.
She probably skipped the transfusion because her husband just couldn't manage to navigate all the logistics. As far as I recall, she was the one primarily managing her own treatment, and she likely wasn't in any state to be making suggestions when things started taking a turn for the worse. Or maybe she just didn't want to anymore—maybe she'd simply had enough. Who knows what goes through a person's mind when chemo starts wreaking havoc on your system... but there's no point dwelling on it now. That's just how it turned out. 😢

Betty Allen15 said:...we should have had psychological support too, but we didn't know where to turn.

Well, this forum is its own kind of therapy, though I was pretty surprised when I searched for "psychological" just now and nothing popped up :/.

That said, some non-profits do offer free professional counseling. I actually took my sister to a local support group once. I basically had to drag her there because she’s convinced "nobody can help her"—as if she’s the smartest person in the room. Maybe asking for help feels beneath her, or maybe she just doesn't want to admit she's struggling. Some people just prefer playing the victim; why ruin the role now?

I wasn't sure what to expect either—how to act, what to say, or even who to talk to. It’s hard enough to make that call when you're doing okay, let alone when things are falling apart. When you feel like garbage, even moving from the couch feels like a marathon, much less seeking help.

We went together, and they were great—welcomed us warmly, explained their mission, and offered their services for just a tiny membership fee. Even though that first visit felt successful and useful, we haven't been back, despite all the chaos and trauma hitting us daily. It's been a year. Honestly, when life sucks, we just lean into the suck and wait for it to pass. If it passes. It's not a great strategy.

So, I'm making a formal vow 😉 that I'll head back there next week with the intention of actually staying. I'll probably go solo, since my sister will likely find some excuse as to why she can't make it. I'm going to try to learn how to actually ask for help, in the hopes that they can actually provide it. We'll see..

We honestly just needed someone to listen. That initial shock when you get hit with a diagnosis isn't even about the illness itself; it’s this sudden, terrifying realization that you might actually outlive your own child. It sends you straight into a spiral of irrational thoughts. For me—someone who was always considered the level-headed, optimistic one in the family—it felt like I was completely sinking. It was something I had never truly processed before. My whole family lived long lives; nobody dealt with anything malignant, we all stayed healthy, and I always spoke about death as just a natural part of life.
I couldn't wrap my head around any of it at first. But, like I said, things turned out okay—we have a really optimistic prognosis now—so I can finally look back with a clear head at everything that went down.
I've come to realize that bad news doesn't just happen to "other people." You have to learn how to face whatever life throws at you, especially because the way you carry yourself can either help the patient or make things significantly harder for them.
Let's be real: not everyone is built to handle this kind of stress. People who need support deserve to have it provided through an actual, structured system.
I know non-profits try their best, and support groups exist, and thank God we have this forum where we can vent our worries, but we still need professional help.
I know that around the world, there are dedicated services and a huge emphasis placed on psycho-oncology to help ease the trauma. So, it makes me wonder why it isn't possible here to at least start implementing organized care for patients and their families.

Having worked as an advisor for an association that unfortunately folded, I can tell you from firsthand experience that most people don't actually need a clinical professional. What they really need is someone who has walked the same path—someone who truly gets it, understands the nuances, and possesses the right kind of information just to help them process the situation and find a way to cope. More often than not, just having a real conversation was enough. It was rare to meet anyone who genuinely felt they needed to seek out a psychologist or a psycho-oncologist.

I totally agree—talking to people who have actually walked in your shoes is hands down the most valuable thing there is. There’s a reason people say "a healthy person can't understand the sick," right? Real-world experience hits different.
Still, I have to say, during all those hospital visits, I met so many people who were just completely lost on how to help themselves or their loved ones. It’s not like everyone has the luxury of being tech-savvy enough to jump on an online forum, or even find local support groups that actually work.
For instance, I met this mother from Canada whose child was fighting cancer, and she was just desperate for someone—anyone—to talk to. The doctors were incredibly dedicated, don't get me wrong, but nobody has an extra hour in their day just to sit and listen to her. That’s why I honestly think this kind of emotional support is vital; it really ought to be a formal part of the healthcare system, where people can choose the type of connection that fits their own needs.

Betty Allen15 said:I totally agree that talking to people who have actually walked in your shoes is the most valuable thing there is. There’s a reason the old saying goes, "a healthy person can't understand the sick"—nothing beats lived experience.
That said, during my time visiting various hospitals, I met so many people who were completely lost on how to help themselves or their loved ones. Not everyone has the luxury of being online, scrolling through forums, or even having access to support groups.
For instance, I met a mother from Canada whose child was undergoing cancer treatment; she was desperate just to have someone to talk to. The doctors were incredibly dedicated professionals, but no one had an extra hour in their schedule just to sit with her. That’s why I believe this kind of emotional support is vital and should be integrated directly into the healthcare system, allowing people to choose the type of support that fits their specific needs.

Agreed. But let's face it: in most hospital settings, they rarely bother informing patients about existing support organizations. These medical staff know exactly which groups exist, what they do, and how much they matter—especially when it comes to organizations supporting children with cancer—yet they don't pass that info along. Some groups are incredibly active, like Krijesnica, which even tried to organize psychological counseling for adults, but they rarely saw takers. Eventually, they had to cut that service because they were essentially burning through funds paying therapists for empty appointment slots. More often than not, a family member will step up instead, because there's still this unfortunate stigma where the patient is viewed as "too sick" to handle another diagnosis. Sadly, those prejudices regarding mental health support are still very much alive.
It also seems to be a near-universal rule that the questions people ask quietly are usually just basic information they should have received from their doctor in the first place. A systemic issue with the average American doctor is the lack of communication skills—something that really ought to be a core pillar of medical school. They often struggle to deliver news effectively, frequently hiding behind the defensive logic of "if they didn't ask, everything must be clear."