Resources and support for families dealing with cancer and serious illness

Huge thanks to Veda, Muscles, and everyone else for all the support!! Ever since this happened within my own family, I’ve found myself spiraling into these thoughts that maybe I missed something or didn't do enough (I even reached a point where I thought I just had to leave everything in God's hands and hope for the best). It really helps to see how optimistic the mood is here on the forum, and seeing how diverse everyone's experiences are gives me so much strength—your help truly means the world🙏
I’ve always been someone who sticks strictly to conventional medicine, but lately, I find myself becoming a bit more open to alternative approaches. That being said, I have to admit I’m pretty skeptical when it comes to those pseudo-doctors and charlatans who circle around photos of patients like vultures. I think we’re all incredibly vulnerable right now, and we’re willing to do absolutely EVERYTHING to help our loved ones heal, but we really have to watch out for those people who are just looking to take advantage of our wallets...
btw, if anyone has any experience seeking a second opinion or trying homeopathic therapies for a loved one, would you mind sharing what worked for you? Thanks in advance🙂

So, some doctor—who didn't even bother introducing himself, by the way—told me today that my mom could potentially transition to home care to manage her surgical recovery. The catch? She’s still mostly immobile and incredibly weak. He suggested I just "have a chat" with the head professor tomorrow when they arrive. Brilliant. How exactly am I supposed to provide full-time care for someone who can barely move while simultaneously working a job where taking sick leave or vacation isn't even an option? The doctor mentioned they might include a recommendation for a rehabilitation center or a spa facility in the discharge papers, though apparently, that depends on availability and how long the waiting list is.
What am I even supposed to do in the meantime? I know I have no choice but to wait until tomorrow to talk to the professor, but the sheer panic of it all is starting to set in. Does anyone have any actual advice?

wanderingharbor61 said:Dandelion seed I sent you a PM. All the best!

Lindsay I read through your post; it’s excellent, and honestly, I think it’s incredibly important that your father has managed to hold onto his sense of humor. Maintaining a positive outlook is everything when you're dealing with stuff like this.

Opala1 I noticed you’re also new here, just like me, and that you're riding a bit of an emotional rollercoaster. Regardless of how we feel, while our loved ones are fighting these kinds of diseases, we have to keep moving forward—there really isn't any other choice.

Can anyone recommend a good oncologist at a major hospital, maybe somewhere like Mayo Clinic, so we know who to call if things get serious?

Sending my best to everyone. Hang in there.

My dad was treated over at the Mayo Clinic by Dr. Soldic. The doctor certainly knows his business, and I respect his skill, though I wasn't a fan of how he delivered prognoses. He tends to take the worst-case scenario, make it sound even bleaker, and then just throw it right in the patient's face. Then again, perhaps it's better to be braced for the worst from the start rather than being coddled only to face disappointment later.

But strictly speaking, as far as his ability as an oncologist goes, I can recommend him.

Best,

Amanda Miller69 said:Some doctor told me today—didn't even bother introducing himself—that my mom could probably head home to recover from her surgery soon. The thing is, she’s still pretty much immobile and super weak, but he said I should just talk to the head professor when they arrive tomorrow. Great. How am I supposed to care for someone who can barely move while working full-time, especially since I can't get any sick leave or vacation time? The doc mentioned they could suggest a rehab center in their discharge papers, but apparently, that depends on availability and how long the waitlist is.
What am I even supposed to do until then? I know I don't have a choice but to wait for the professor tomorrow, but honestly, I'm starting to panic. Anyone got advice?

Hey Amanda Miller69,

1. Go see your gynecologist and ask them to write you a recommendation for medical leave so your primary doctor can sign off on it. Tell them you're dealing with intense ovarian pain or that you can't even sit down without hurting. If a specialist gives a recommendation, general practitioners have to honor that leave since it's covered by Medicare. OR
2. Ask the professor if they can keep Mom in the hospital until she can be transferred to a rehab facility, which they can usually set up within two days. Usually, patients already in the hospital get priority for those spots.

That's how you might be able to make this work!!!

Fingers crossed for you!

rustyscout31 said:Huge thanks to Veda, Muscles, and everyone else for being there for me!! Ever since this hit my family, I’ve been stuck in this loop of feeling like I failed somehow (I honestly even thought about just handing everything over to God and letting fate take the wheel). But seeing how optimistic everyone here stays, despite all our different stories, really gives me the strength to keep going. Your support means the world.🙏
I've always been a strictly traditional medicine kind of person, but lately, I’ve been becoming a bit more open to alternative options. That said, I'm definitely not buying into those fake healers who swarm around photos of sick people like vultures. I think we're all just incredibly vulnerable right now, willing to do absolutely ANYTHING to get our loved ones healthy, but you have to watch out for the scammers targeting our wallets...
btw, if anyone here has actually tried getting a second opinion or using homeopathy for someone who's sick, please let me know how it went. Thanks in advance!🙂

Personally, I recently followed some advice and reached out to some homeopaths, and honestly? I feel like I just threw money down the drain. Their stuff is super vague, even if they claim to offer a personalized touch... Basically, they're just glorified vitamins. The injections have to be ordered from Vienna, then you have to drive all the way to Jesenice to pick them up, and dealing with US Customs is a total nightmare.
I actually sat down and talked to a few primary care doctors who deal with
patients facing serious diagnoses all the time, and not a single one of them could point to a single positive outcome from homeopathy!!!

Amanda Nelson54 said:My dad was treated at the local University Hospital under Dr. Soldic. Honestly, the guy knows his stuff—props to him—but the one thing I couldn't stand was how he delivers a prognosis. He’ll take the absolute worst-case scenario, make it sound even more grim, and then just throw it right in the patient's face. Then again, maybe it's better that way—getting hit with the brutal truth upfront instead of being coddled only to be let down later.

Regardless, as far as oncologists go, I'd definitely recommend him.

Best,

Thanks so much for the info, 😘, because if you had asked me about this on April 2nd, I wouldn't have known a single thing about it!

But hey, that's life—just gotta keep moving forward.

I was on the phone with my mom tonight, and she sounds good and is holding up well, which really cheered me up!

She saw a dermatologist who didn't find any suspicious spots, but since the diagnosis is metastatic melanoma, we're still waiting on the PET/CT results...

Sending love to everyone here—hang in there 🙂!

Hey there!
Has anyone here actually tried ozone therapy before?

cosmicsurfer7 said:Dear Amanda Miller69,

1. You should head over to your gynecologist and have them write you a referral for sick leave, then have a general practitioner finalize it. Just tell them your ovaries are killing you and you can't even sit down without intense pain. General practice is required to open a claim based on a specialist's recommendation, since it's covered by Medicare. OR
2. Ask the professor to keep Mom in the hospital until she can be transferred to a rehabilitation center, which they could potentially arrange within two days. Patients currently admitted to the hospital usually get priority.

That’s how you could manage it!!!

Fingers crossed for you!

I think I’ll go with the second option. Mom has MRSA, so they aren't going to let her out until her system clears it; it's potentially lethal. Besides, they shouldn't be discharging an immobile patient to home care anyway, and my brother mentioned the professor told him Mom would likely be in the hospital for quite a while. I need to call Mom after 8:00 PM to see if the professor actually showed up at the hospital. If he did, I'll call him to figure out next steps or schedule a time to meet with him. It's funny how you don't truly realize what a complete mess our healthcare system is until you're personally stuck dealing with it.😠😠

Of course, our esteemed professor decided to be a no-show again today. My brother keeps telling me not to bother with the other doctors, claiming they don't actually have any decision-making power anyway. So, here I am... just more waiting.😠

Amanda Miller69 said:Of course, the "great professor" didn't even show up today. My brother told me not to bother with the other doctors because they don't actually make any decisions anyway. So, back to waiting...😠

Don't let it get to you, Amanda Miller69, you're still pretty new to this. You'll find that you eventually become immune to this kind of nonsense. Just ask anyone else on here...
Stop wasting your breath fighting windmills.

brightgardener8 said:Try to keep your cool, Amanda Miller69; you’re still pretty new to this. Eventually, you'll find yourself becoming immune to all this nonsense. Just ask anyone else on this board...
Don't waste your breath fighting windmills.

I'm trying. I just wish I had stumbled upon this forum when my mother first got sick. Back then, I was honestly too terrified to even look up the facts or process what was happening.

Amanda Miller69 said:I’m trying. I just really wish I’d stumbled upon this forum when my mom first got sick. Back then, I was honestly too terrified to even look anything up or face the reality of what was happening.

Hey honey,
I’ve seen plenty of cases where people were just as sick as she is, but they didn't have any trouble getting the care they needed at places like the Mayo Clinic. So please, don't back down and don't let them push you around! YOUR MOM HAS EVERY RIGHT TO THAT CARE!!!

cosmicsurfer7 said:Honey,
I’ve heard of plenty of people facing equally serious illnesses who didn't have any trouble getting care at the local wellness clinic, so please, stay firm and don't let them push you around! YOUR MOTHER HAS EVERY RIGHT TO THIS!!!

I’ll certainly make sure of that, provided the professor actually decides to show up at the hospital. On a brighter note, Mom managed to shuffle down the hallway a little bit today while leaning on my aunt and her friend, though my aunt tells me she's terrified of walking. I’m going to insist they move her to the rehab center so she doesn't end up stuck in bed; if she stays immobile, we're really in for it.

wanderingharbor61 said:Thank you so much for sharing that, 😘, because when I think back to April 2nd, I realized I knew next to nothing about this topic!

But that’s just how life goes—you just have to keep moving forward!

I was on the phone with my mom earlier tonight, and she sounds strong and is holding up well, which really lifted my spirits!

She had an appointment with the dermatologist, and they didn't find any visible lesions, but since the diagnosis is metastatic melanoma, we are currently waiting on the PET/CT results...

Sending love to everyone here, and hang in there 🙂!

When it comes to melanoma, I honestly feel that surgeons and molecular biologists play a more vital role than oncologists do. If the tumor can be surgically removed, my take is that you absolutely should go through with it. Here in the States, the Stanleys over at the Mayo Clinic are quite well-known, and they’ve actually co-authored a book on melanoma themselves. Even though they specialize in plastic surgery, they are experts at operating on metastases in the skin, subcutaneous tissue, and occasionally the lymph nodes; for anything involving the lungs, liver, or brain, you really need to reach out to a surgeon who specializes specifically in those areas. Truly, from the bottom of my heart, I hope neither my husband nor your mother will ever need anyone else!

Molecular biologists aren't doctors, obviously, but they play such a critical part in treating melanoma because they are the ones researching, experimenting, and testing new frontiers. And even though results vary for everyone and we haven't found a universal cure for this awful disease yet, I truly believe their work offers the greatest chance for recovery. In fact, I am deeply convinced of that.

Because when the oncologist you were referred to looks at you with pity and tells you there isn't much that can be done—and we all know what kind of cancer that is—that is when you have to step outside the standard paradigm and look toward things you might never have considered if the situation weren't so dire. I wrote once that if we had to face cancer, thank God it was melanoma, and thank God it doesn't involve chemotherapy, radiation, or poisoning the body. All that is left is faith, hope, and courage. Seeing how brave someone can be while facing this situation gives me strength whenever I start to lose hope or feel overwhelmed.

So, it is wonderful to hear that your mom is doing well. This disease can be beaten; I know it, and I know people who have done it. Melanoma, in particular, has a tendency toward spontaneous remission that isn't nearly as rare as you might think. It can pass ten or twenty years without a recurrence. We ourselves had five wonderful years, and I truly believe we can have twice that many again. Your mother could have those years too. Just try not to give in to despair or panic, and try to listen to the doctors—especially the oncologists—as little as possible. They simply don't have the answers that you (and we) actually need right now.

And yes, I am crossing my fingers that they find the primary tumor! Please, let me know how you scheduled the PET/CT, and most importantly, how long the wait is?

gentlemoose62 said:Hey, first thing's first—you really have to make an effort to get some sleep at night, even if you need a little help from a sedative once in a while. Don't let your body wear itself out right before chemo starts.
I totally agree, I’m just so inspired by Dennis's bravery and her positive attitude through everything she's dealt with.
I know how terrifying this awful chemo is, but you’ve already made it through five rounds, so you can definitely handle this one too.
And then there’s just one more left, I assume. Come on, you've got this!👍

As for all the bad news and depressing stories... unfortunately, there will always be those, that's just the nature of a place like this. But there are also tons of good updates and beautiful stories and, most importantly, so many people who truly understand you and want to help. You are never alone here, but I know you already realize that.
I'm praying your chemo goes as smoothly and painlessly as possible.👍

So, my fifth cycle wrapped up today, and honestly, I feel like someone ran over my head with a steamroller. Sadly, instead of just one more round, I actually have three more to go. It's part of a specific Mayo Clinic protocol—one week of chemo followed by three weeks off, and that's the plan for eight cycles total. After that, we wait for the test results and see what happens next.
Thank you so much for the support, to you and all the wonderful people here, and I'm wishing the very best for all of you too!👍

Elizabeth Gonzalez55 said:Can you please tell me how you went about scheduling a PET/CT scan? Mostly I just want to know how long the waitlist is.

Elizabeth Gonzalez55, thanks for that massive info dump—really appreciate the encouraging words 🙂!

I spent today with my family and Mom is holding up pretty well. She was on the phone laughing with her sister, she even planted some flowers for me and worked in the garden... things are looking up a bit.

Regarding the PET/CT:
- There’s a specific protocol for referrals at www.mayoclinic.org/pet-ct, and apparently, a regular GP can't handle the paperwork—her oncologist didn't even realize that.
- We got an appointment date for the second half of May. If you don't have supplemental insurance, there's a co-pay through Medicare $433.
- Going private costs about 11 $0.00, but the appointment is also scheduled for late May.

We finally decided to just head over to Budapest instead. We sorted everything out today by talking it through and getting the paperwork ready—we've got an appointment there next week.
Now we could really use any insight from people who have been to Budapest for this kind of thing. Feel free to shoot me a DM!

Sending good vibes to everyone here. Hang in there!

My dear friends,
I’ve fallen into this dark headspace lately. Part of me feels like I shouldn't even post these thoughts here because I don't want to bring anyone else down, but there are a few things I need to get off my chest...
My dad is undergoing radiation right now, and honestly, he hasn't been doing great the last few days. Still, I have faith that once the radiation is finished, we'll see that the therapy actually worked and helped him enough to turn things around. He also had chemo yesterday, and I think all of this combined just absolutely drains the body, which explains why he’s struggling so much lately.

I was reading some of Ivanna's posts where she mentioned how her mother's illness acted as a filter for the people in her life, and I couldn't agree more. It makes me want to say how much I thank God every single day for my family. We look out for one another, we care, and we love. I'm grateful for my mom and my brother who help me, and for me being able to help them so we can all stay somewhat sane. I'm grateful for my husband, who is so understanding of everything I'm going through—I don't know if I would have half his patience, love, or attention if the roles were reversed. He looks at me with that same devotion whether I'm happy or when I'm feeling miserable, pathetic, and desperate. I'm thankful for my godmother, who takes me for walks, makes me laugh, encourages me, and gives me a hug without me even asking; she's always right there. And I'm thankful for my small circle of truly loving friends who are available any day or night, and for this thread where I find endless empathy and support.
Looking at it all written out like that—who else do you really need? It's true. I don't need anyone or anything else, besides of course my dad getting better. But I'm human, and certain things just get to me. It's hard to stay indifferent. I'm mostly thinking about certain people within our extended family circles who haven't called to ask my mom how she is in months. People who call but don't even bother to ask about my dad. People who finally reach out after ages just to lecture my mom on what she should or shouldn't be doing. People we run into in town who act all curious and concerned, yet never actually call or visit. Or people who tell my mom she needs to reach out to certain relatives and try to mend long-broken family ties, etc., etc., etc.
The more I dwell on it, the sadder I feel...
Regards to everyone.

My dear friends,
I’ve spiraled into a bit of a dark headspace lately. I almost didn't post because I didn't want to bring everyone else down with my heavy thoughts, but there are a few things I need to get off my chest...
My dad is currently undergoing radiation, and honestly, he hasn't been doing great the last few days. Still, I'm holding onto hope that once the radiation is finished, we'll see that the therapy actually worked and helped him enough to turn things around. He also had chemo yesterday, and I think the combination is just absolutely draining his system. That's likely why he's struggling right now.

I was reading some of Ivanna's posts where she mentioned how her mother's illness acted like a filter for the people in her life, and I couldn't agree more. It makes me want to stop and thank God every single day for my family. We look out for one another, we care, and we love. I'm so grateful for my mom and my brother—they help me stay sane, and I do my best for them too. I'm thankful for my husband, who is incredibly understanding; I don't know if I could show him this much patience, love, or attention if the roles were reversed. He looks at me with the same devotion whether I'm happy or when I'm completely broken, desperate, and miserable. I'm grateful for my godmother, who takes me for walks, makes me laugh, encourages me, and gives me a hug exactly when I need it without me even asking. She's always right there. And then there are my small circle of true, loving friends who are available any day or night, and this thread, where I find endless empathy and support.
Looking at it all written out like that—who else do you really need? It's true. I don't need anyone or anything else, aside from my dad getting healthy, obviously. But I'm only human, and certain things just hit hard. It's impossible to stay indifferent to it all. I'm mainly thinking about certain people in our extended family circles who haven't bothered to call and check on my mom in months. Or the people who finally call, but don't even bother to ask how my dad is doing. Or those who call after a massive gap just to lecture my mom on what she "should" be doing. Then there are the people you run into in town who act all curious and concerned, yet they never actually call or visit. Or the ones telling my mom she needs to reach out to certain relatives and fix long-broken family ties, etc., etc., etc.
The more I dwell on it, the sadder I feel...
Best to everyone.

Linda Peterson37 said:Hey everyone,
I’ve been spiraling into this weirdly dark headspace lately—it felt like maybe I shouldn't even post these thoughts here because I don't want to bring anyone else down—but there are a few things I really need to get off my chest...
...
and honestly, the more I dwell on it all, the heavier everything feels.
Sending love to you all.

Bog Lindsay,
I know exactly how you feel. Don't let the sadness win—sending strength to your whole crew, your family, and your friends who are standing by you, and especially sending so much 🙂 to your dad!

Look, I know it's easier said than done, but just focus on the people who are actually showing up for you in every sense of the word—and just tune out the ones who should be there but aren't...

As for us, we're hitting day ten since that brutal diagnosis. At first, my parents didn't even want to talk about it with us, let alone anyone else, but I can see them starting to open up now—we all just have to let it out somehow...

Some of our relatives and friends have been absolute rocks, offering help whenever it's needed, and we're seriously grateful for them—it means the world!

Back when Mom went in for surgery on that cyst (which we now know was actually a melanoma metastasis 😠), they told her it was just a routine procedure. She didn't want to make a big deal out of it or worry anyone, so we respected her call.

I actually kept some close family members in the dark for specific reasons—mostly because they tend to be pretty tactless and insensitive (I don't think she's *that* bad, but still...):
The second she found out, she came over asking how Mom was doing. I told her she was fine, thanks, but then she immediately started pivoting to stories about how someone else died, or how this guy passed away from it, or how there's a funeral tomorrow... blah blah blah.

I swear, I wanted to just scream at her to shut up. Mom was supposedly having a "routine" surgery, so what does any of that other stuff have to do with us?!
And I wanted to tell her thanks for the well wishes, too!

Now that we know the real diagnosis, I know this isn't the end of the road. Mom is incredibly tough. It's hard on her, but she isn't backing down, and we're all right here behind her to support her through this fight😍!

Hang in there, everyone. Best to you all.

Dear Linda Peterson37
I just had to reach out after reading what you wrote. Even though, theoretically speaking, we aren't dealing with cancer every single day anymore, I still find myself scrolling through the comments on this thread constantly. Often, I don't even type anything because I honestly don't know what to say... I'm afraid, or maybe there are just hundreds of reasons why I stay silent, but I felt like I truly needed to speak up about this misunderstanding happening with the people around you. It comes from the heart.
Look, everything that triggers this sadness in you—this feeling of being misunderstood, the extra layers of pain you have to carry on top of everything else—just take it all, bundle it up into one big mass, call it what it is, flush it down the toilet, and let it go. It might sound symbolic, but the point is to purge those emotions. They are draining you and your family dry. Try to see this as one of the most positive shifts resulting from your illness. All these people you’re talking about? They were nothing but drains on your time, your parents' time, and your precious energy. They sucked it all up, and they won't be able to anymore!!! They will eventually sort themselves out and drift away from your life naturally. There’s no need to hold onto bitterness, because losing them isn't actually a loss. By spending time on people like that, you missed out on getting to know others, but now, you're going to get that time back. They are like faulty lightbulbs that burn constantly but provide zero actual light; they are just consumers. Keep your head up, dear!!!

In our situation (my husband had surgery for stomach cancer a year ago when he was 40; thankfully, he didn't need chemo or radiation), he has completely changed as a person. He’s turned into someone I never thought he could be. A psychological evaluation showed anxiety, avoidance, irritability, social withdrawal, and constant nervousness... When I tried to talk to his inner circle about these issues, they just brushed it off as "normal." No one really cared, not even after seeing the test results. Today, things are even worse; he’s slipping into depression. And of course, nobody cares about that either. Not even the fact that he eats everything in sight—overeating, sugar, coffee, beer, smoking... I’ve had to uncover it all piece by piece, finding hidden wrappers of chocolate or catching him sneaking a cigarette in the attic. It’s all a consequence of his mental state, a state that the doctors we visited basically dismissed with a wave of the hand. His own family isn't interested; they don't even bother to visit. They think a two-minute phone call is enough to fix everything. I’ve become the black sheep of the family because I actually listened to the lesson his sister gave us while we were waiting for his surgery—she implied that if he had been with her, things wouldn't have ended up this way. She acts like I don't care for him, or that I should have called her the moment he vomited. But he’s been vomiting his whole life! I told her about it two years ago, and she just said he does that because he "loves to eat," implying it's my fault for not watching him closely enough... It's almost certain that my husband's illness will return, and it's likely that even though I feel like I'm tilting at windmills right now, this is our window to change the script. I can't afford to fight every minor battle or try to explain to people that family and love are much more complex than a quick "How are you?" or "Oh, it's just a crisis we have to bear..." Once I find a way—and I am praying to God that I can hit the right note before the illness returns and my husband finally gets back on his feet—then I will demand my peace. I will settle scores face-to-face with certain people. But right now, I refuse to waste a second of my time on them, whether mentally, verbally, or physically. The battle I am fighting (which I am fighting alone mentally now, since he isn't quite "there" himself) is the most important thing in the world to me, and I won't let trivial distractions get in the way. I've already flushed my water :-)

HANG IN THERE!!! YOU ARE NOT ALONE!!!!
I lost my password in the signature field :-((((