Support resources for families dealing with cancer and other serious illnesses

hollowridge88 said:So, we just got back from the doctor... She was prescribed Reglan for the nausea and Seldiar for the diarrhea. The doctor basically brushed it off as some kind of infection but sent her straight home regardless. He didn't even run blood work or anything... honestly, I'm just speechless and in total shock. This level of negligence and lack of responsibility toward patients here in White Monastery is absolutely bottom-of-the-barrel. They’ve gutted the Emergency Room, and now the clinic can barely offer anything more than pain injections. But okay, that isn't even the main point right now; I am just incredibly angry because everyone seems to be distancing themselves from Mom. It feels like nobody actually prioritizes her health—it’s just "here, take these pills and go home." To me, it is fundamentally not normal for someone to be dealing with two weeks of vomiting and diarrhea. I truly cannot fathom how any doctor could consider this acceptable?! No matter how hard I try to stay hopeful or cling to some shred of optimism, I find myself losing hope and letting go of those straws every single day as I watch her suffer. Watching her deal with the pain, the vomiting, the sheer weakness, the dizziness... seeing her lose her will, feeling so helpless, watching her pull at her hair because she's just had enough... it's overwhelming. In one moment, I am just consumed by misery, grief, and pure despair. Yet, when she asks me, "Will everything be okay?" I always tell her, "Yes, Mom, it's going to be fine." And every single time I say it, I feel this massive lump in my throat because I know it's the biggest lie I've ever told to both her and myself. 😢

Knowing you, that last sentence sounds exactly like something you'd say....

For everyone here going through this, or supporting someone who is: have you ever sought out psychological counseling or just found someone to talk to?
I know there are hospitals out there that immediately refer women following breast cancer surgery to counseling, because losing that sense of femininity and dealing with everything that follows can be such a heavy burden.

Of course, does anyone else dealing with other types of cancer find themselves having these kinds of deep conversations with their family?

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vividsailor7 said:I suspect Reglan might help, though there's a chance it could actually make the diarrhea worse.
I’m sticking with what I mentioned before!

We'll just have to wait and see, because we're seeing another doctor tomorrow, and then he'll be able to refer her to the next specialist...

Lisa Sullivan96 said:For everyone here going through this, or those supporting loved ones, have you ever reached out for psychological counseling or just had someone to talk to?
I know there are hospitals out there that immediately set up counseling sessions for women recovering from breast cancer surgery because losing that sense of femininity can be such an incredibly heavy burden to carry.

And naturally, for any other types of cancer, do you find yourselves talking things through with your family?

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To be honest, we haven't sought professional help anywhere, though maybe we should, but we mostly just lean on each other and process everything within the family with my siblings. Mom actually prefers not to talk about it at all because she gets so upset, and she’s even asked us not to bring it up in front of her since she's already dealing with so much.

How many cancer advocacy groups are there in America? Are there smaller organizations available for people who want to join up to learn more about a very specific type of diagnosis?

In my experience here in America, these groups have been a massive help. I highly recommend reaching out if similar organizations exist stateside.
They truly can be a lifeline, whether you need hard facts, a chance to talk with people walking the same path, or just any other kind of support and advice.

I was actually hoping to connect with some younger people who had to deal with losing a parent at an early age. From what I saw in a TV documentary, that kind of support is pretty common out there and, of course, it’s free. But here in the States, it just doesn't seem to exist like that. We basically only have this one group support session once a week over on Hirceva Street in New York City, which is great, but they charge $67 per meeting for anyone who has lost a loved one. So, I guess I just gave up on it because it's just too expensive for me.

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mistyjackal842, a while back, the Krijesnica association set up some group support sessions for people dealing with grief. You should reach out to them and see if there's anything still available. www.krijesnica.hr

mistyjackal842 said:I was actually looking to connect with young people who lost a parent at an early age. From what I saw in a TV documentary, that kind of thing is common out there and it's free, obviously. We don't really have that here. There's just some group support once a week on Hirceva Street in New York City, which is fine, but they charge $67 per session for people grieving a loved one. So, I gave up on it because it’s just too expensive.

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Back when I was 24, what I really needed was someone to tell me that this grief and emptiness isn't going away... that I should treat it like a chronic illness you have to manage, rather than something time just fixes. It took me way too many years to finally realize that...

crimsongull20 said:If I were 24 again, what I would have needed most is someone telling me straight: this sadness and emptiness isn't going away. I needed to be told to treat it like a chronic illness that requires constant management, rather than a phase that time will simply wash away. It took me far too many years to finally grasp and accept that truth.

Exactly.
People who haven't lived through it CANNOT understand. No matter how much they claim otherwise, they just don't get it.
They mean well, but they often end up making things even harder for those fighting the battle.

What irritates me most is hearing: "Life goes on," or "Just stay strong." That's it? Is that supposed to help?
As if I don't know that! Those people should ask themselves: HOW is someone actually supposed to find strength when they're in the middle of this? It’s easy to give empty advice, but can anyone offer anything concrete?

A coworker once told me that grief is as vast as love itself, and that thought stays with me. You have to walk through the fire; grief isn't some temporary thing like people think. The hardest part is accepting reality—accepting that you have to learn how to live with the emptiness. And that takes time. God knows how much time.

Or her take: time heals everything—well, it heals enough, if you know what I mean. It’s not like the pain actually lessens just because you get older; you just sort of learn how to carry it around with you. 😢

silvercanyon7 said:The only way forward is accepting reality and learning how to live with that void. It takes time... God knows how much time.

I don't know. It’ll be 14 years since my old man passed, but honestly? Feels like yesterday. If anything, the loss just hits harder as time goes by... 😢

melloworca6 said:Or maybe she's right: time heals everything? Hardly. It doesn't make the pain any less intense as the years go by. You just eventually learn how to live with it. Does the ache actually fade, or do we just get better at pretending it isn't there? 😢

Exactly. There is absolutely no way this will cure anything; it’s just about having peace of mind and knowing how to handle it all. The simple fact that I lost my father during his prime years is tearing me apart. He should have been living his life and enjoying himself right now.

crimsongull20 said:I don't know. It’s been nearly 14 years since my older brother passed away, but as far as I'm concerned, it feels like it happened just yesterday. In fact, the void only seems to grow deeper as time goes on. Does it ever actually get easier? 😢

Sometimes I wonder where I'll be in five years, or even ten. Then, when that thought hits me, the pain and the emptiness just feel so much heavier. Sometimes I tell myself I only get five minutes with him every year. Just five minutes. And then I realize there won't be a single second left... uh... 😢

Lisa Sullivan96 said:For anyone going through this, or if you have loved ones dealing with it, have you ever sought out psychological counseling or someone to talk to?
I know that overseas, there are hospitals that immediately send women after breast cancer surgery to speak with a counselor because losing that sense of femininity and everything that follows is so incredibly hard.

And obviously, for all other types of cancer, do you discuss these things with your family?

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Hm, sure, they have everything over there—it’s practically science fiction compared to our situation. In reality, you should just be happy if you actually get an appointment for surgery, radiation, or chemo within a somewhat reasonable timeframe. Psychological counseling? Forget it; that's entirely left to non-profits. Our oncologists aren't trained for it, nor do they have the time to deal with it. You just handle it however you can. An association based off Hirceva Street helped my family immensely during my mom's final days. "Sve za nju" is highly recommended if you're managing breast cancer, provided the patient is able to take advantage of everything they offer.

silvercanyon7 said:Sometimes I wonder where I'll be in five years, or ten... and then when that thought hits, the pain and the emptiness just feel heavier. It’s like I tell myself I only get five minutes with him every year, JUST five minutes... and then realizing there isn't even a single second left... uh... 😢

Maybe you'll dream about him often, like I do with mine. Those "real dreams." Probably just some way the mind tries to make up for the loss.

Does anyone have any insight regarding the standard of care at the New Marof hospital? My grandmother broke her hip and underwent surgery, and now the attending physician is pushing to transfer her there for a month of recovery instead of allowing for home health care with a visiting nurse coming by daily. Years ago, I heard rumors that the patient care there was absolutely abysmal, with reports of patients being practically neglected; has anything actually changed in recent times? I would truly appreciate some guidance on this matter...

brightnomad10 said:Does anyone know about the quality of care at the New Marof hospital? My grandmother broke her hip and had surgery, and now the attending physician wants to transfer her there for a month instead of having her recover at home with a visiting nurse coming by daily. Years ago, I heard the patient care there was a total disaster—like they straight up neglect people. Has anything actually changed lately? I really need some advice...

New Marof has been renovated and from what I hear, things are running pretty smoothly now. The only issue is that my grandma might get depressed, given how much noise the hospital makes and the fact that so many patients end up there because we still don't have enough hospice facilities. At her age, that kind of mental strain can seriously stall physical recovery. If you can swing it, I’d strongly suggest keeping her at home with a combination of a visiting nurse and a traveling physical therapist. You can make it work if you plan it out.

Thanks for the quick reply. I find myself in agreement; I spoke with my grandmother, and she mentioned that the hardest part is witnessing other patients nearing the end of their lives. Personally, I suspect such an environment would only invite deep depression, as I have always found the atmosphere of hospitals and the sight of the suffering to be quite revolting 😕. For that reason alone, she decided to stay home.

brightnomad10 said:Thanks for getting back to me so fast. I totally agree—I was talking to my grandmother about this, and she said that’s exactly what makes it so brutal: being surrounded by other patients who are basically at death's door. Personally, I think that kind of environment just drags you straight down into depression; I can't stand hospitals and seeing people suffering like that 😕. That’s why she decided to stay home instead.

I hope you guys can get everything sorted out. Good luck!

Thank you for the kind wishes. May the new year bring you nothing but the best, and may luck be on your side through 2014! All the very best to you.

Honestly, staying at home is definitely the better way to go. In my experience, everyone in my family—my grandma, grandpa, and my mom—received all their care right at home. No one ever had to step foot in a nursing facility. Even my mom’s physical therapist told me that. He mentioned that in state-run facilities, they just don't have enough staff. He actually said when he visited one of those government centers, some patients weren't even dressed properly. It made it impossible for him to even start their exercises. Some were even thirsty, so he ended up having to pass them water bottles himself. The only places he spoke highly of were private options; he mentioned Corluka, though he did say the space there is really cramped, even if the staff is wonderful. Villa Brezovica is also a good option, but man, it is expensive. The nurses there are young and very kind, though. People usually go there for short-term rehab after surgery and then head back home. They even have a full-time physiatrist on staff.

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