Support resources for families dealing with cancer and other serious illnesses

Robin Gray8 said:Sorry if this is off-topic, but I have a question.
I have someone very dear to me with melanoma. They need surgery abroad because the necessary treatment isn't available here in the States. Medicare covers the costs, but I'm wondering how long it takes to get approval. Is it an endless process, or does it happen quickly? It's stage 3 melanoma.
Does anyone know?

I've been seeking treatment abroad for several years now because things just aren't possible here at home. Medicare covers my expenses, so I can explain the process of getting medical rights approved for overseas treatment from my own experience. First thing you should know: it’s slow. It's messy. Even when it's urgent, you need a lot of patience. To start, the specialist treating the patient has to fill out a formal Request and Proposal for Overseas Treatment. If there's already a specific clinic in mind, list them as the suggestion, then submit everything to the Medicare Administration. That's when the actual administrative grind begins. A medical board from Medicare will reach out to consultants at various American clinics to get expert opinions on whether sending someone abroad is actually justified. If they find even a tiny chance that the treatment could be done here in the US, they’ll call the patient in for an outpatient exam to reassess. But if all those clinics agree that overseas treatment is the only way, then the Medicare Administration accepts that opinion and approves it. They send over a letter of guarantee and officially request an appointment at the chosen foreign clinic, usually involving a deposit. The whole procedure typically takes about two months. Everything is handled case by case, but that's the general timeframe. I've switched clinics and countries multiple times, and every single time the paperwork starts from scratch—even when my previous approval was still valid. I hope your paperwork gets sorted out quickly. If anything is unclear, I'm happy to help.

Angela Wright, I’m rooting for your little one. I hope they make steady progress and get back to full strength quickly so you can both move past this difficult stretch... sending 🙂

Thanks for the reply, Maria Lee54, I'll definitely give you a shout if I need anything else
And thanks to Angela Wright for the answer too

Maria Lee54 said:I haven't been active on the forum for quite a while. I've been dealing with a series of heavy setbacks regarding my treatment—everything from the nightmare of finding a clinic capable of performing my surgery to this current moment where I'm just sitting around waiting for Medicare to approve my treatment over in Switzerland. My health has taken a visible turn for the worse; the tumor is aggressive and growing fast, which makes this waiting game feel almost unbearable. But honestly, I haven't lost hope yet. I still believe I'll make it to the operating table.

Sending everyone my best—keep those positive thoughts coming.😉

Hang in there!
I'm crossing my fingers for you. If you've managed to fight through everything life has thrown at you up until now, you can handle this final stretch. Just keep pushing toward the finish line.
best,

Hello everyone. I have been sitting here for about fifteen minutes now, trying to figure out how to introduce myself and what words to use to begin my story. To be honest, this is about my father. 😢 I am hoping that by joining this forum and connecting with all of you—lovely women I haven’t even met yet—I might find the strength to navigate this ordeal as smoothly as possible, if that is even achievable. Last November, my dad was hospitalized due to a ruptured ulcer. While he was recovering and preparing for discharge, some strange symptoms began to emerge: jaundice, swelling in his legs, fever, sudden weight loss, and eventually, intense pain. After an exhaustive battery of tests, our doctor informed us that my father has cancer—specifically hepatocellular carcinoma (HCC). It has already metastasized to his rib, almost the entire liver is affected, and his prognosis is extremely grim. 😢😢😢
First came the shock, the disbelief, the tears... the pure heartache. I simply couldn't wrap my head around it. How could this happen so suddenly? He had never dealt with any illnesses before; he never complained about anything. Now, there is something I feel I must mention: he enjoyed a drink. While he wasn't a heavy drinker, he did consume alcohol regularly over the years. He was never aggressive or a troublemaker, but I suppose that doesn't matter now. Our doctor told us immediately that surgery wasn't an option, so we were referred straight to an oncologist. He started chemotherapy right away, which he seems to tolerate incredibly well—almost no side effects at all. Mentally, he seems stronger than any of us, though perhaps he is just acting; he refuses to discuss it at all. He goes in for chemo every three weeks, and that is the routine. As for his condition, it remains stagnant; it isn't receding, but it isn't spreading either. Because the doctor keeps praising him for how well he's handling the treatment, my father has become somewhat deluded. He acts as if he is perfectly healthy again and has reverted to his old lifestyle—drinking alcohol. Despite all our conversations and warnings, he lives in his own world, completely ignoring us. He has become an incredibly difficult person to deal with. He used to be such a cheerful, soulful man, but now he is a disaster—selfish, rude, and caustic. He insults and belittles all of us. He is wasting away, losing weight day by day. Dealing with him is an immense struggle; the arguments we have leave my soul aching. To make matters worse, I am currently pregnant with my second child, and after these fights, I often end up in my room crying for an hour. I don't know how to handle this. What is happening to him? It feels as though this false "macho" persona is finally surfacing. We thought he was coping well, but he clearly isn't. He is showing his true colors now. His mood swings are constant, and they are nearly impossible for us to endure. My mother is suffering even more because of him; he is psychologically abusive toward her. I can't stand it, and I don't think I should allow it, regardless of how sick he is. I feel like I am at my breaking point. How am I supposed to move forward? I have my own apartment, but it breaks my heart to leave my mother alone to face all of this.
I have tried everything. I have sought professional advice, and I am doing everything within my power to support his recovery. I go out of my way to get him homemade buttermilk, brewer's yeast, olive oil, honey—basically everything I hear might help—including that ImmuneMax AHCC supplement. But he treats it all with such indifference; he doesn't value any of it. On top of everything, he is diabetic and has to manage his medication. I am at a loss as to how to continue with him. How can I manage all of this without hurting myself or my baby, while still protecting and helping my mother? How...?
Please forgive me if I have overwhelmed you with such a long post; I suppose I just needed to pour out all these emotions and explain the situation. I hope you can understand.

casualraven43 said:...

Look, honey, you can’t do more than what you’re already doing. At the end of the day, a man is his own boss; he makes his own calls, no matter how much those decisions make us want to scream. The reality is that this is his life playing out, even if you're all caught in the crossfire. All you can really control is how much of his outbursts you choose to absorb. You can love him to death and still realize that you can't run headfirst into a brick wall. It’s the same deal with your mom. She needs to sit him down and have a real, serious talk. I get the feeling she’s his primary safety net, which is probably why he feels so emboldened to act out. If she actually threatened to walk away—and actually followed through by, say, moving in with you and leaving him to deal with his own mess—maybe he’d finally be forced to sit in the silence and actually think about his actions.
Hang in there.
p.s. When you guys do sit down with him, stop using the word "must." Instead, try framing things like, "Do you think it might be smarter to..." You have to give him the illusion of autonomy. Pushing him will only backfire, triggering more rage and frustration.

Dear Ivana, you hit the nail right on the head. My mother has always been his rock—a truly selfless woman who has loved him unconditionally her entire life. I’ve actually suggested to her that she should be a bit firmer with him, maybe set some boundaries to see if he’ll finally wake up and come stay with me, but she simply can’t. He is so incredibly ill, both physically and, as you can see, mentally, and she just doesn't have the heart to turn her back on him, regardless of how much it hurts her. She has accepted this as her cross to bear, and she carries it with grace. But honestly, my heart breaks for her. It’s devastating to watch; she is still young, and I need her so much. I feel like I would fall apart if anything happened to her, yet here she is, enduring everything and suffering in silence. I can't leave her side because she is still working, and when she comes home exhausted, having little Vedrana jump into her arms, that’s what gives her the strength to keep going. Those moments are the only thing that puts a smile on her tired face, and I refuse to take that away from her. On top of that, I am there for her through all the dark days; fortunately, Mom understands everything perfectly and supports us in every way she can.
Folks, I don't even know what kind of mental affliction this is. Today, he came home after his eighth round of chemotherapy, and I caught him in the basement drinking ice cream. Honestly, how much of a fool does a person have to be to do something like that? It’s selfish toward himself and his family all at once. Then, when I look at him—so frail, so pale, barely able to walk—I am overcome by this indescribable heaviness in my chest. I remember him just a few years ago, how vibrant he was. He was our eternal optimist, never angry, never sad, always wearing a smile and having a kind word for everyone. He absolutely adored me, and Mom was his queen; that’s why she spoiled him so much. Oh, dear God, it is soul-crushing to see what he has become. Why? There are days when he seems a little better, and we are all so overjoyed and optimistic, but then there are days when—believe me—I find myself wishing he would just pass away. My God, I am terrified of those thoughts and those moments. But the reality remains: I love him, because he is my DAD. There are days when I feel like I am losing my mind because I don't know how much longer I can endure this. He has an abdominal scan coming up soon to check his status, and I am terrified of the results. I am so afraid. Part of me thinks that if things took a turn for the worse, it might serve as a wake-up call so he realizes how much damage he's doing and stops living this way, but the other part of me is praying to God that the illness recedes and things get better. Am I losing it? Sometimes I'm too scared to even think. Believe me, I am at my happiest when I am asleep.

casualraven43, just give Dad everything he asks for. Don't try to hold him back or fight him on it. I know it’s incredibly hard on you and Mom, believe me, I really do, but please make sure you guys take care of yourselves too. My dad went through the exact same thing with hepatocellular carcinoma...

I try to support him and give him everything I possibly can, but there is a limit to how much one can endure out of pure humanity, regardless of how ill he may be. I am fully aware of the situation—I understand his illness and just how serious everything is—but I find it absolutely unbearable to deal with his behavior and the way he acts. No matter how sick he is, I simply cannot tolerate this. I would gladly fulfill many of his whims, but his insistence on drinking and mistreating everyone around him is where the line is drawn. Even though my heart is breaking from the pain and sadness, and things are incredibly, terribly difficult... we are all doing everything in our power for his health. Everyone is actively involved in his treatment, working closely with his doctor. I do my absolute best to help him, from managing his medications to exploring various alternative therapies; we even buy him whatever he asks for. Every single day, I prepare lunch exactly how he wants it—which usually means the very foods he shouldn't be eating, but that is what he demands. And after all that, look at how he shows his appreciation. He repays us by drinking 😢😢 every single day. He insults us and treats us poorly. Just hold on a moment... you are my father, I adore you and I love you, but does everyone else have to fall ill because of him? Perhaps I am losing my mind; I am trying to make sense of it all. Maybe I am wrong, and maybe I am failing by giving in—letting him have his way just to avoid an argument—but is that really okay? Is it right that we are fighting like lions, paying for everything (and please don't misunderstand me, I don't regret spending a single cent), and sourcing his medications, only for him to wash it all down with 😢? Perhaps I truly am not thinking straight. Maybe I am the one who needs help 😕.. oh, goodness...

Look, there’s absolutely no excuse for him to be treating you guys like garbage or insulting you. You two are out there doing everything humanly possible to help him, and this is how he repays you? It’s messed up. My dad used to go hard with the drinks when he was out with his buddies too, but once he got sick, things spiraled fast. That kind of cancer... it's sneaky, it doesn't show up until it's already deep in your system. He was actually pretty mellow, mostly just sleeping, though he had those low-grade fevers for a few months. If he even stepped outside for a second, he’d be rushing right back to bed because he just felt so wiped. I went through all the motions too—buying every supplement, vitamin, and "miracle" juice under the sun because people kept recommending them. He took everything, really hoping it would turn a corner. His legs were swelling up constantly, so he basically lived in bed.
Not every patient reacts the same way, you know? Some people turn mean or bitter, and honestly, maybe they don't even realize they're doing it. Who knows how much the illness is messing with his head... especially if he actually knows what he's facing.
I don't know, maybe try talking to his doctor? See if they can get him admitted to the hospital for a little while. At least there, he wouldn't be able to grab a drink, which might make life a hell of a lot easier for both of you.🤷

casualraven43 said:Listen, Ivana, you hit the nail right on the head. My mom is his absolute rock—she’s this incredible, selfless soul who has loved him unconditionally her entire life. I’ve actually suggested she lay down the law just to get some sense into him, maybe tell him to pack up and come stay with me for a bit, but she just can't. He’s so sick—physically and, as you can see, mentally—and she simply doesn't have the heart to turn her back on him, no matter how much he puts her through. She’s accepted this as her cross to bear. But honestly? It breaks my heart. I feel for her so deeply; she’s still young and I need her so much, and the thought of anything happening to her just crushes me. She carries so much stress and just takes it. That’s why I can’t leave her side; she’s still working, and when she comes home halfway exhausted and my little Vedrana jumps up to wrap those tiny arms around her neck, that’s what gives her the strength to keep going. It’s the one thing that puts a smile on her tired face, and I refuse to take that away from her. Then there’s me, trying to be her support during these brutal days—thankfully, she understands and backs us up completely. She does everything she can.
Folks, I don't know what kind of mental breakdown this is... today he came back from his 8th round of chemo, and I caught him in the basement drinking ice cream. Seriously, how insane do you have to be to do that? First, you're sabotaging yourself, then you're doing it to your whole family. And then, when I look at him now—so thin, so pale, barely able to walk—this overwhelming wave of grief just hits me. My heart tightens like a vice. I remember him just a few years ago, how vibrant he was, the eternal optimist. He was never angry, never sad; just always smiling and having a kind word for everyone. He absolutely adored me, and Mom was his queen... which is exactly why she spoiled him rotten. My God, it hurts just thinking about what he's become. Why? There are days when he seems a little better and we’re all riding high on optimism, but then there are days where, believe me, I just wish he would die! Oh my God, I'm so terrified of even having those thoughts... but the reality is, I LOVE him, because he’s my DAD. Some days I feel like I'm going to snap because I can't handle this anymore. He has an abdominal scan coming up soon to check the damage, and I am terrified of that report. I'm scared. Part of me thinks if things got worse, maybe he’d finally see how much he's hurting us and realize he can't live like this, but the other part of me is praying to God that it recedes and things get better. Am I crazy? I'm scared to even think about it. Honestly, I'm happiest when I'm asleep. Believe me.

Honey, that isn't your dad talking. It's two different illnesses speaking through him.
There is very little you can actually do, other than being there for both of them, especially for your mom. Everyone chooses their own path in life, plain and simple. I believe there are times you wish he would just pass on, and listen, that doesn't make you a bad or selfish person. Your dad is just stuck.
You have to prioritize yourself and your child. During my pregnancy, I spent so much time worrying needlessly, and I ended up having a premature baby. People tell me it wasn't my fault and that these things just happen, but I truly believe a part of it was on me, so please, be smarter than I was. You cannot take responsibility for your parents, but you owe it to your children to stay whole.

Angela Wright said:Sweetheart, please understand that this isn't your father speaking; it is two different illnesses talking through him at once.
There is very little you can actually do, other than simply being present for both of them—especially for your mother. Everyone chooses their own path in life, and that is just the reality of it. I believe there are moments when you might even wish for his passing, and I want you to know that isn't a bad or selfish thought. Your father is simply trapped by his circumstances.
You have to prioritize yourself and your child. During my own pregnancy, I spent so much time worrying unnecessarily, and in the end, I gave birth prematurely. People tell me it wasn't my fault because these things happen, but deep down, I am convinced my anxiety played a role, so please, be wiser than I was. You cannot take responsibility for your parents, but you owe that level of care to your children.

You are absolutely right, Ivana. I need to focus more on my little angel; they haven't done anything wrong and deserves to grow up healthy and happy regardless of everything else... I read that your baby is home now and doing well with Mom, and I am just incredibly happy to hear that. 🙂🙂🙂
Today, I noticed for the first time that Dad's hair is thinning dangerously; he even complained to Mom about it, she told me... It hit me harder than I expected. It’s just so difficult. This is his eighth round of chemo. I knew this would happen, but seeing him looking so vulnerable and somewhat frightened breaks my heart.
How have your loved ones handled hair loss or going bald? How did they cope with it emotionally? Did they use hats or anything to cover up? And did their hair eventually grow back? Please forgive my thousand questions, but I am facing this for the first time in my life, and I don't have anyone else I can turn to or talk to about this.😢

My dad decided to just shave his head once he started losing hair. Honestly, it was pretty depressing at first because every time we looked at him, it was just this constant, blunt reminder of his illness. But then, things changed. Once it grew back even a little bit, he couldn't stop staring at himself in the mirror, cracking jokes about how handsome he’d become and how he seriously needed to start styling it with a part. 🙂 It's way easier for guys, though. They usually keep it short anyway, so regrowth happens in a flash. For women who are used to long hair? That’s a whole different level of struggle. Even when it grows back short, they still feel totally out of sorts.
My dad used to always tell me how much he loved girls with that look... I always had this nagging feeling that he was planting a seed, wanting me to remember that if I ever got sick, since I've had long hair my entire life... at least, that’s how I interpreted it.

My dear friend has been battling colon cancer for quite some time now, and she’s been dealing with very low platelet counts lately. I was wondering if anyone here might know of anything that could help boost them? The doctors keep sending her home to just wait for the numbers to rise on their own, which is incredibly frustrating because none of us can figure out how to actually help her improve those levels without any specific guidance...

slyangler402 said:My godmother has been battling colon cancer for quite some time now, and her platelet counts have been dangerously low for a while. I’m wondering if anyone knows what might actually help boost them? The doctors just keep sending her home and telling us to wait for the numbers to go up on their own, which makes zero sense to us—how are they supposed to rise without any intervention or advice?

Treating thrombocytopenia really boils down to identifying the underlying cause and how severe the situation is. If the drop is triggered by something else—like sepsis, a vitamin deficiency, or side effects from specific medications—the first priority is knocking out that root cause. For patients facing severe cases, getting a referral to a hematologist specialist is non-negotiable. If there's even a suspicion of TTP, you have to jump on treatment immediately. The standard protocol involves plasmapheresis, which essentially scrubs those antibodies against the ADAMTS13 enzyme out of the bloodstream and replaces them with fresh plasma to restore the enzyme. Most commonly, though, we see ITP, where treatment depends entirely on the severity. If the count dips below 20 x 10^9/L, doctors usually start with corticosteroids; if there's active bleeding, they might bring in intravenous immunoglobulins. The goal is to push that count above the 20 x 10^9/L threshold so the patient can move into regular monitoring. If a patient becomes refractory—meaning the steroids just stop working—they might use immunoglobulins to stabilize things before considering a splenectomy to hopefully induce remission.
Source: Mayo Clinic

From what I understand, unless the levels hit those critical danger zones specifically caused by chemo, they don't usually do much. Once it hits a real crisis level, that's when they step in with a blood transfusion.

Is a cerebrospinal fluid transplant even a thing?

Jamie Howard3 said:Is a cerebrospinal fluid transplant even a thing?

😕
No. CSF is the fluid that bathes the brain and spinal cord, circulating from the skull down through the spine.
What's the issue here?

casualraven43 said:You’re totally right, Ivana. I really need to focus more on my little angel. The kid didn't do anything wrong and deserves to be born healthy and normal, no matter what happens... I read that your baby is home now, safe with mom, and honestly, I am just beyond happy for you. 🙂🙂🙂
Today was the first time I actually noticed Dad’s hair starting to thin out big time. Even Mom mentioned it to me... It kind of hit me hard, you know? I feel terrible. It’s tough. I mean, he’s through eight rounds of chemo, but seeing him look so helpless and a little bit scared... it just breaks me.
How did your loved ones handle the hair loss or going bald? How did they deal with the mental side of it? Did they wear hats or anything? And did it grow back? Sorry for throwing a million questions at you, it's just my first time dealing with this whole thing and I don't really have anyone else to ask or even talk to about it. 😢

Honey, I get it. I really do. I sacrificed myself—which was my choice, sure—but I also sacrificed my kids, which wasn't my right to do... and I don't think I'll ever forgive myself for that. My husband was diagnosed with lung cancer seven years ago, and he's still here today. But the things he put us through... it's horrific. It's too heavy. No one would understand because I can't even bring myself to tell anyone. Only my two kids and I know the truth. I wanted the best for him; I fought for him with every breath and every ounce of strength I had, but him? What he did to us... there's no excuse for it. There isn't a disease in the world that justifies that behavior. It's just tragic. My daughter ended up with anxiety and depression because of it. I think I managed to pull her through, though she's still on 2mg of Normabel, and she's only 19. Then there's my son... I pulled him through as much as I could, too. He's got his own life now, but he struggles so much with empathy. And where does that leave me in all this? Just Xanax and 10mg of Normabel for now. We aren't to blame for the sickness that hit him—I know how hard that's been on him—but the three of us are victims. If I had made different choices earlier (though maybe it's never too late?), I might have been able to save my children. This is just... it's sad, and it makes zero sense to anyone who hasn't lived it. I wouldn't wish it on anyone.

Dear Lisa White54, I am so incredibly sorry that you all have to go through this. My heart truly breaks most for your children; they are far too young to endure any of this, especially under such circumstances..
I truly understand how you feel..
I completely agree with your sentiment that no illness can ever serve as a justification for such behavior.. I don't know your husband's background or the specific ways he has jeopardized your lives, but there is hardly a day that goes by where I don't weep or feel a sudden, overwhelming surge of rage toward him. 😢😢😢
Just yesterday, I found myself shaking in my room, crying uncontrollably and praying to God for the strength to keep moving forward. In a moment of total exhaustion from the stress and heartache, I even took my frustrations out on my little angel, who is only one year and two months old. Just imagine the state I've reached.. my child certainly did not deserve that, and I carry a deep sense of guilt and remorse today because of it. I promise myself I will never let it happen again, no matter how much pressure I am under..
There was a day when my anxiety became so physical that I was in actual pain. I had to lie down for a long time and eventually see a doctor just to ensure that my baby was okay. Thank God, everything turned out fine.
As for him, I am no longer trying to walk on eggshells. Honestly, I don't even care anymore. He can do whatever he wants, as long as he stays away from us. Ugh... if only it were that simple, but I doubt it will be..
I recognize that people facing terminal illnesses face immense struggles, and it isn't easy for them either. Truly, I would give anything to help or ease the burden for anyone in such a situation; it eats at me.. But should they be allowed to vent their frustration by tormenting others? Should they be permitted to lash out at the very people who live for them, who breathe for them, and who give absolutely everything to support them? I don't know; I have asked myself this question so many times. One moment I am furious, the next I am grieving, then I feel pity, and then I feel a primal urge to strike back. 😢😢😢

Finding out you’re sick? Yeah, the shock, the panic, the stress... it's all totally understandable. You're gonna feel pain, sadness, anger, bitterness—all of it. But honestly, there has to be a line you don't cross. Being sick isn't a free pass to abuse your family; it just shouldn't be done. I actually tried being brave enough to reach out for help once... and let me tell you, one thing is for sure: never again!
I've always tried to put myself in someone else's shoes. Like, how would I want to be treated if I were the one dealing with a serious illness? That's basically how I've always treated my husband.
It's the same deal with people I know who are sick and their families too. Not everyone reacts the same way... it really just comes down to who they are as a person. Sure, I get that meds and stuff can mess with your head and make things worse, but that's no excuse to act out.
Just look out for yourself, protect your peace, and take care of your baby. Your kid is the most important thing you've got!