Support resources for families dealing with cancer and other serious illnesses

nusa, I’ll shoot you a private message later today so we don't clutter up the thread with off-topic talk. Honestly, my mom has decided she doesn't need to stick to such a strict diet, and then she tells me how it goes: she'll cook some kale and sausage stew, and even though she claims she isn't eating the sausages, she ends up sipping up all that greasy 😲. Or take me, for example—I'll head out, and my husband tells me he greased the entire pan with that heavy oil used to sear the chicken 😲. I really don't know what to do; it seems like this is just how things go with everyone. I bet even someone like Poskrizecki is stuffing himself with sweets... Basically, she can't be bothered to cook just for herself, so she either whips up something random or does exactly what I just described... But then her stomach is constantly hurting, likely because the food is sitting there or moving too slowly through the area where they did the sigma connection, so it bothers her more sometimes than others. Her internal scar tissue gets irritated too, which creates internal pressure and everything... but she insists that as long as she's up and moving, she doesn't need any 🙂. For the first time in my life, I am actually thanking God that she is so stubborn, because her being this way used to drive me absolutely crazy 😁

quietpilot87 said:Fortunately, my mother’s cancer diagnosis didn't cause any fractures in my own friendships. There were certainly stretches where I withdrew from everyone and had absolutely no desire to socialize, but I was met with a great deal of empathy from 🙂
On the other hand, my parents actually lost people they truly believed were their friends...

My parents only have a handful of genuine friends. These are individuals I’ve known since the day I was born, and we have always operated under the principle that it’s all for one and one for all. It was precisely because of that bond that when things hit the fan and money became a serious issue, those very same people stepped up to organize charity fundraisers for us...

Being young, my own circle of friends hasn't quite matured enough to handle such heavy, life-altering crises. I don't hold it against anyone, nor did I ever demand an understanding that wasn't naturally offered...

Nancy Hernandez43 said:I'm young—and my friends just aren't mature enough to wrap their heads around this kind of heavy stuff yet. Honestly, I don't hold it against anyone. I wasn't out there begging for empathy if they didn't have any to give.

Look, the thing is, I never actually wanted people's pity—not for me, not for my family. I didn't want this whole situation treated like some massive, tragic catastrophe. What really gets to me is how most people approach you like your life turned into a total nightmare overnight 😁 And then comes the drama, just like I mentioned earlier 😁

The people who brushed it off? They weren't even the problem. It was actually the exact opposite 😁

I suppose it’s time I offered a few "words of thanks"—and I’ll start, of course, with my immediate family. To go back to the very beginning, right when Mom first fell ill—my aunts, Mom’s own sisters, decided to pin the whole thing on my dad, my sister, and me. Honestly? Thank you so much for never once checking in on the three of us over these last nine months. Not once did they ask how we were holding up through those grueling 24-hour cycles, or how we managed to stay afloat while they spent all their energy judging us—claiming we weren't taking her to enough specialists or whatever else. Now, look, I get it—people get angry and bitter when someone they love gets sick—but really, why cast blame on my dad, who sits there with tears in his eyes just combing his wife's hair? Or on my sister, who was supposed to be getting married this September but had to call it off because she’s needed here at home? Or on me, who spends every waking second managing medications, cooking three meals a day, and basically letting college and my friends slip through my fingers... It’s honestly hard to wrap my head around. And to top it all off, one of them actually blamed us for her developing psoriasis—she even had to fly out to Tenerife just to try and feel better.

A huge thank you to that one friend who messaged me late one night on Messenger, asking if Mom looked any better than the last time she saw her (Mom is doing okay, generally, though she has lost function on her left side). I simply told her that I was just grateful my mother was still breathing, and then I promptly changed my status to offline.
And thanks to Mom’s relative who declared he never wants to see my sister or me again because we didn't visit when his father passed away at 76. Since Mom got sick, he hasn't so much as brought over a soda or called to check in on her. I understand he's grieving too, truly, but he lives in another city entirely, whereas Mom requires our attention 24/7—and besides, we've been keeping it from her that her uncle passed, since they were together during an X-ray and it would have sent her into a total tailspin. May his soul rest in peace; he was a dear uncle to me too, living a long, full life with three grandkids heading off to college, while my beautiful Mom is only 55 and won't live to see her own grandchildren grow up.
Then there are the people who, when they run into you, act all awkward and say they felt "too uncomfortable" to call—as if being ignored is somehow easier than being reached out to.

There are a thousand other people and situations that have hit me hard, but I won't bore you all with the details. Besides, looking around, I see we are all navigating similar storms, so I know you all get it.
On the flip side, there are people who have truly surprised us with their willingness to step up and provide support. I want to say a sincere thank you to my partner, who understands me, supports me, and—God knows—patiently endures my mood swings and erratic behavior. There are days when I know I am absolutely impossible to deal with. Thank you also to my sister’s boyfriend, who sits alone in their apartment waiting for her late at night, eating takeout even though he’s used to her cooking every single day. And thank you to Dad, for making me lunch when I can't, washing the dishes, vacuuming, and taking on a mountain of chores just to lighten my load.
That is how my family works—we stick together, which is what matters most; we love each other and we fill in the gaps for one another.
Thank you, God, for keeping us all under one roof for now, and please, let it stay this way for as long as possible, because we truly treasure it.

It seems like most of us here are walking down the same lonely path.
Ever since Mom got her diagnosis, those visits and phone calls from family and her old friends have been tapering off, especially since she lost her mobility about a year ago. Whenever I run into them out in the world, the conversations always circle back to the same awkward place. It’s obvious they just don't know how to act or what to say. They tell me how "hard" it is for them to see her like this, being so sick and unable to move. Meanwhile, even though she’s often mentally adrift, she still recognizes those same people and greets them with a smile. We don't hold their absence against them. They just don't get it. Honestly, it feels like we're the only ones who truly understand because we're living it. The absolute worst part is when outsiders start lecturing us on how to provide care or manage her treatment—people who haven't even seen her in ages. Some even suggest putting her in a nursing home or something similar. My blood pressure hits the roof every time I hear that. Maybe some people don't have any other choice, sure. But for us? She dedicated her entire life to caring for us with nothing but love. There isn't a chance in hell she's leaving our sight. At home, she’s surrounded by people who actually give a damn—my husband, my wife, my sister, myself, and even the neighbor who watches over her while we're at work. She is loved, and we are going to be right there, serving her until the very end. Every single day she spends with us is precious.
On another note, Mom took a turn for the worse this past Tuesday—trouble breathing, a locked jaw, things like that—so the paramedics rushed her over to the oncology ward. They gave her Mannitol and dexamethasone, which seemed to bring her back to us somewhat. She’s staying at the Mayo Clinic now. She's running a constant fever, hovering somewhere between 98 and 101 degrees.

It feels like we’re all navigating this same exhausting cycle of being misunderstood by those closest to us.

If I may jump in, I’ve found that the people who actually stepped up were often those we had just met or people we don't even know at all. It’s a bitter pill to swallow, but the ones we actually expected to be there? They just vanished when things got heavy.

That said, I don't think it's worth wasting any more mental energy on them. The world is still full of decent souls who stand by us regardless. I am genuinely looking forward to the day our association raises enough funds to host a massive get-together so we can finally all meet in person. Sending love to everyone!

Look, most people just react however they can—it's usually a mess.

Sure, some folks are straight-up malicious, but honestly? Most of them are just insecure and have zero clue how to act appropriately.

Thanks, Melissa Kim45, for this post. You actually had me laughing and crying at the same time 🙂

Wishing nothing but the best to you, your mom, and all the other fighters out there! 🙂

slyseal28 said:It feels like we’re all dealing with the same kind of friction, where those closest to us just don't seem to get it.

I’d just add that, for me, the biggest support has actually come from people I’ve only just met or even complete strangers. The people we naturally expected to lean on have mostly just drifted away when things got tough.

But honestly, there’s no sense in wasting energy worrying about them. The world is actually full of wonderful people who are standing right by our side through all of this. I’m really looking forward to when our association raises enough funds to host a big get-together so we can all finally meet in person. Sending love to everyone!

That is such a beautiful way to put it. We were actually lucky enough to receive help from both close friends and total strangers alike. Not a single friend or family member has let me down or caused me any pain, and I feel incredibly fortunate for that. We are truly blessed with good people who go out of their way to make things easier without making a scene or bringing any negative vibes into our lives.

And finally, I have some wonderful news—today’s PET/CT scan came back clear. I’m not going to go overboard announcing a "victory" or anything like that, because I know this illness stays with us for life. I am just deeply grateful that it’s left us in peace for now, giving us a chance to focus on the baby on the way this fall.

Sending my best to everyone, and I’m fully behind slyseal28's idea that we should all get together and meet sometime soon!

Elizabeth Gonzalez55 said:That’s a beautiful way to put it. We’ve been incredibly lucky to have support from everyone, both friends and strangers alike. Not a single friend or family member has let me down or caused any hurt, and I truly feel blessed because of that. We are surrounded by good people who do everything they can to make things easier without making a scene or bringing any negative energy into our lives.

And finally, some great news—today's PET/CT scan came back clean. I’m not going to go overboard announcing a "victory" or anything like that, because I know this disease is something we live with for life. I am just deeply grateful that it’s left us alone long enough to get through the summer and give us a chance to focus on our baby on the way.

Sending love to everyone, following the spirit of slyseal28's idea that we should all take a moment to find and meet one another!

Man, that is incredible news!😍 It looks like that immunotherapy is an absolute powerhouse. 👍

slyseal28 said:It feels like we’re all dealing with the same thing—that frustrating gap where even the people closest to us just don't seem to get it.

If I can add one thing, it's that the real lifelines have often been strangers or people we barely know. The ones we actually expected to step up? They just vanished when things got heavy.

But honestly, why waste any energy worrying about them? There are plenty of good souls out there standing by us. I’m really looking forward to when our foundation raises enough funds to host a big get-together so we can all finally meet face-to-face. Sending love to everyone!

I second that..
and I'm so grateful for the kind people who have been helping me through this.

My dad had his surgery today. Everything went smoothly on the surgical side of things, thank God..
We still have a long road ahead of us... but it was a solid start...

Hang in there, everyone!
😘

Elizabeth Gonzalez55 said:That is so beautifully put. We’ve been incredibly lucky to have help from everyone, both friends and strangers alike. Not a single friend or family member has ever let me down, and I feel so blessed for that. We are truly fortunate to have good people in our lives who go out of their way to help us without any drama or negative vibes...

And finally, some wonderful news—today's PET/CT scan came back clear! I'm not going to shout it from the rooftops or anything since I know this illness stays with us for life, but I am just so incredibly grateful it left us alone long enough to get through the summer and give us a chance to focus on our baby on the way...

Sending love to everyone, and I totally love the idea of meeting up and getting to know each other like slyseal28 suggested!

Such amazing news! Honestly, I am just so happy for you guys...

Linda Wright5 said:Hello to everyone fighting this battle,
I follow this sub regularly, though I tend to post more over at the association's forum.
I have a question... how do you all handle the psychological toll on patients?
My sister was diagnosed with ovarian cancer—she's also dealing with deep vein thrombosis and ascites—so she's been barely mobile for about ten months now. Sometimes she acts like a spoiled child (despite being 39), throwing fits if things don't go her way, trying to control and manipulate everyone... And honestly, I'm lost on how to deal with her. I don't want to just cave to every whim, but sometimes she truly drives me crazy... Should I be blunt with people like this, or should I walk on eggshells and just endure their outbursts?
She saw a psychiatrist a few times and was happy with her, but it's been quite a while since her last visit...

Personally, I struggle with the psychological aspect—likely because it hasn't lasted long. My grandmother's condition has progressed significantly over the last few months; she's completely immobile, and on top of everything, she suffered a broken leg due to bone pathology. It was manageable enough while she was still lucid. But this past week, she started drifting, and today she was completely checked out—it was so heartbreaking I left her crying. I know it’s likely the intense pain and the heavy narcotics she's on. Is it possible for people in this much pain to unconsciously retreat into their own world just to escape the reality of it?

slyseal28 said:It feels like we’re all dealing with the same thing—that feeling where nobody in your immediate circle actually gets what you’re going through.

I’d just add that, honestly, it’s usually the people we barely know or have just met who step up the most. The ones we actually expected to be there? They just... vanished.

But whatever, don't even waste your energy worrying about them. There are plenty of good people out there standing by us. I’m seriously looking forward to when our association raises enough cash to throw a massive get-together so we can all finally meet in person. Sending love to everyone!

I'm with you on that—I see it every single day while dealing with my mom's illness. People we haven't seen in years suddenly pop up just to ask how she's doing or if they can help out 😍!

Elizabeth Gonzalez55, I am so incredibly happy you got those PET/CT results back today, and even happier that everything came back clean 🙂! That is huge news! Now you can finally focus on your baby! Best wishes!

I hadn't actually posted anything about Mom yet—I was just living in this limbo, waiting for the diagnosis to be confirmed, the scans, all that...
But here's the update: the PET/CT showed some metastasis in one lymph node. They’re going to go in and remove it via surgery in about three weeks, and then it's straight into therapy.
Mom is doing okay, though. She’s staying positive, and ever since she found out there’s a surgical plan in place, those depressive slumps haven't been nearly as frequent.

Hang in there, everyone. We've got a fight ahead of us!

Dandelion, reading news like that is such a breath of fresh air—honestly, I’m celebrating right along with you! 🙂

When it comes to people being supportive (or totally useless) while dealing with this whole sickness thing... man, we’re barely even starting and the drama is already piling up. Not that anything actually surprised me, though. The people we thought were genuine, true-blue friends have actually stepped up and proven they're the real deal. I haven't heard any bitter comments from the haters yet, and honestly, I don't need to, because I know exactly which direction those insults are coming from... but then there’s just the sheer stupidity of people close to you. Like, seriously, just yesterday two people passed away and someone felt the absolute need to announce it right in front of my mom—one of those poor souls had been in a hospital room right next to hers just a few days prior... I'm pretty sure it wasn't meant to be malicious, but that kind of mindless, thoughtless behavior just makes me so incredibly angry!

Anyway, after a few days on a liquid diet (she’s dropped 4 pounds in the last 10 days alone—she's down to just 130 lbs now), Mom finally got "cleared out" enough for her colonoscopy yesterday. But ugh, it was a disaster. The pain was just too much because of how twisted her intestines are, and after about 20 inches, the doctor had to stop the whole procedure because of a blockage. Now she’s waiting on surgery, which might happen before they even get the biopsy results back... and I am just so livid because now the surgery might go ahead without that info, and I have no clue how my poor mom is supposed to put those lost pounds back on!!!??? She’s so weak, even if she keeps insisting she feels fine... Does anyone have any advice on how to help her gain weight without causing more pain or making her intestinal blockage worse???
I’m terrified she’s going to lose even more after the surgery goes down...

Also, what has your experience been like with post-op recovery and staying in the hospital? How long do people usually stay after surgery if nothing goes wrong? And does the chemo start immediately after the operation? If it does, do they let you come home after a couple of days, or are you stuck in the hospital indefinitely? Also, is it possible to receive chemo at a different hospital?
There’s a chance Mom might go to Cleveland for the surgery since we have a recommendation for a world-class surgeon and a family connection over at the Mayo Clinic, which honestly seems like a way better option than the local hospital in Kansas City... I’ve let her make the final call, but I can tell what’s really holding her back is the fear that she’ll be stuck in the hospital forever and we won't be able to visit... but I fully intend to be right by her side for as long as it takes.
I’ll keep digging through the forums too, since I know you guys have probably covered this all before...

And thanks to everyone who reached out via DM. There’s no question about it, the support from this forum has been our biggest lifeline!!! ...and, hiddentiger80, clean up your inbox a bit—I couldn't send you a reply! 🙂

I was hoping someone could share their experience with interferon treatment—my mom is really curious about it too. We were just talking about it, and I told her I’d post a question here on the forum! First off, we’re looking for info on side effects, and also whether this drug is covered by Medicare.

I’m honestly drowning in all this information—it's overwhelming. Does anyone know what’s actually worth taking to boost the immune system, maybe some herbal supplement to help alongside the therapy?
I’ve been reading up on noni, propolis, macrobiotics... and obviously, I get that she can't just take everything at once!
For now, we got her some freeze-dried royal jelly. She’s taking it twice a day and feels okay, but she’s super skeptical about anything "alternative"—she’s even thinking about quitting it altogether.

Any info or advice at all would be great!

shadowmason6, I'm so sorry to hear about the failed colonoscopy—hang in there!

Regarding the decision on how and where to get treated, just let Mom handle that. At the end of the day, it has to be her call!
That’s exactly how we handled it—we gathered all the facts, but for a few days, she wouldn't even talk about it. At one point, she even said she wanted to give up because she felt fine right now, and who knows what happens later... Of course, we weren't having any of that, so she decided to continue treatment back home!
As for what the whole thing will look like or what's waiting for us after the surgery—honestly, I have no clue🤷!

To everyone fighting this, and to the families and friends standing by them—stay strong🙂!

shadowmason6 said:Does anyone have any advice?... How does one actually put the weight back on...? It’s much harder than losing it... I find myself constantly searching for ways to regain those lost pounds... and it feels like such an uphill battle... But wouldn't that cause harm... and potentially lead to an intestinal blockage...?
I am genuinely terrified that once this surgery is over, I’m going to lose even more...

I just wanted to say thank you to everyone who reached out via DM... Honestly, there's no doubt in my mind that the greatest support I've found is right here on this forum... and... hiddentiger80Hey, clear out some space in your inbox—I wasn't able to send you my reply! 🙂

Cleaned up... 😁 I'll be brief (and I still owe a few people PMs—Nusa, please forgive me)... 🙂)

Please, don't you dare start with that food! That whole way of eating... it’s just this deep-seated American fear of hunger and being underweight. I have serious trauma from growing up around that mindset... 😁 Sorry for jumping in like this, but people are being so incredibly draining. Look, you can't force anything, and it’s completely normal that my mom is losing weight. Once she gets through the surgery, her weight will stabilize at a lower level. But please keep in mind that since this is a digestive tract disease, trying to force-feed her just to gain pounds could actually backfire... The recovery period regarding weight takes about a year and a half, though regaining strength and stamina really depends on the individual. In my mom's case, I don't think she'll ever go back to exactly how she was before, which honestly doesn't make sense given her age and everything else she's dealing with. She lost 12 pounds and hasn't gained them back even now. People have been driving me absolutely insane, constantly questioning what she isn't eating or telling me she needs to eat more slowly. She was on such a strict health diet, but in America, that practically feels like eating air... if there isn't a solid piece of meat or fat floating in your soup, people don't even consider it a real meal. And whenever they saw her, they’d just harp on about how thin she looked and how "terrible" it was. They had no idea until I finally snapped and told them that it would be much more terrible if she were six feet under just because of ten pounds... then they all just stared at me like I was some kind of monster. 🙄 I realized that after some time, once the Zeldac started spreading and she began obsessively stuffing herself because of how everything around her just felt so dull and numbing, she would weigh herself on the scale every single morning... I mean, it’s just awful. Or take lunch, for instance—everyone would just stare at her plate like they couldn't survive without seeing what she was eating. It makes me want to snap at them in my usual obnoxious way, telling them to get lost or they might as well go eat rocks instead... But honestly, it's so obvious that I have deep-seated trauma regarding meals. People are constantly forcing me to eat when I just don't want to, but I got used to avoiding that kind of violation while living abroad, and as for my own business... 😁Well, at the end of the day, that was her call to make... and I'm just trying to... 😁I respect that. Sometimes I might spit venom, but even then, people tend to hold back when they're standing right in front of me... 😬

Regarding the vegetable soup... I’ve been giving it to my soul, but please, don't go adding any thickeners! No flour-based roux either. Miso soup is actually quite wonderful; you won't gain any weight from it, but it provides that much-needed nourishment... and that's exactly what is required... 😘

wanderingharbor61 said:I was wondering if anyone could share their experiences with interferon treatment, because my mom is really interested in learning more about it; we were just talking about it earlier, and I told her I'd check this forum to see what people say! Primarily, we're curious about the side effects and whether the medication is covered by Medicare.
🙂!

First off, I just want to say a huge thank you to everyone following our journey and rooting for us :-)

While I don't have any personal experience when it comes to interferon, I have spent quite a bit of time reading up on it, so I can tell you a few things:

In our experience, low-dose interferon was offered at Mayo Clinic, but they noted that we would have to cover the cost ourselves, which means it isn't typically covered under Medicare. My understanding is that Medicare generally focuses its coverage on things like chemotherapy using DTIC or potentially radiation therapy.

Generally speaking, the therapy can be administered in either high doses or low doses; if they go with the high-dose route, the treatment usually lasts about a month, whereas with the low-dose approach, the treatment spans an entire year and the patient manages their own injections at home. The reason people opt for the low-dose version is to avoid those heavy side effects associated with high dosing—things like high fevers, exhaustion, weight loss, nausea, cognitive issues, headaches, and depression. There is actually some debate over whether the low dose is truly effective, as some recent studies suggest the efficacy is basically the same as the high-dose method, though you will still find plenty of studies online that disagree with that conclusion.

In the medical community, interferon is slowly being phased out as a primary treatment for melanoma and is being replaced by something similar called Proleukin therapy. Since I am certainly no medical expert, all I can say is that both drugs function in a very similar way by stimulating the immune system. However, Proleukin has to be administered exclusively in a hospital setting because the potential side effects are much more severe than what you see with interferon, involving risks like kidney failure or even heart failure.

Anyway, that is pretty much everything I know about the subject.

hiddentiger80 said:Please, just don't start with that whole food thing too! That obsession with eating enough and being terrified of looking skinny... man, I have actual trauma from hearing stuff like that growing up. 😁 Sorry if I'm getting worked up here, but honestly, people can be so exhausting. Look, you can't force anything, and it’s totally normal for Mom to lose weight right now, plus she'll probably drop even more after the surgery is over. But you gotta realize this is a digestive tract issue, so trying to force-feed her just to pack on pounds might actually backfire big time...

I know exactly what you mean because I've spent my entire life listening to people lecture me about being too thin. And it was mostly coming from my own mom, 😁
But, the math is pretty simple—she's standing at about $20 (around 5'5")... if she loses another 12... 😢

You can do the math yourself, but right now 😵 my mom was 50 when she finally got discharged from the hospital, even though she was 64 before—well, actually, let me correct myself, she lost 14 pounds
. You really need to keep all of this in mind because what matters most is eating high-quality food... lots of vegetables and light broths 😬. It isn't about the number on the scale; it’s about how you actually feel, because those pounds always find a way back eventually 😘. Like I always say, nobody ever died from being hungry 😘. Take care
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