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

I absolutely agree that this isn't primarily my burden to carry—it’s his. When I'm around my father, I’m basically putting on an Oscar-worthy performance. I stay relentlessly positive; nothing else. Honestly, I maintain that exact same facade with the rest of my family and friends too. There is zero crying when he's around, period.
The depression tends to catch up with me once I'm finally alone, but even then, I make sure to give myself some breathing room. I suppose being an anonymous poster here means I can admit that, at times, I feel pretty pathetic.
Today, I picked up some beta-glucan for him to help boost his immune system. His doctor mentioned it was perfectly safe for him to take.

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Grace Ross20 said:Rachel Williams, if you wouldn't mind, could you perhaps describe the process of how your health completely fell apart?
For the last ten days, my heart has been racing uncontrollably. I’m struggling to catch my breath, and these bouts of dizziness just keep hitting me out of nowhere. Is it possible that seeing my father end up in the hospital with an embolism finally took its toll on me?

I am looking for some semblance of stability—some way to settle down, to find acceptance, to simply stop before I irreversibly destroy myself. How does one actually preserve their mental health? Because when things start spiraling like this, I truly feel like I’m on the verge of losing my mind.

Regarding what you’ve described—as Angela Wright pointed out, it sounds like a panic attack. It could very well be anxiety, which isn't surprising at all given the current circumstances. But then again, there are ways to treat that. 😉 I find myself thinking about all of this quite separately from the current discussion. I have been dealing with severe anxiety since I was about fifteen years old. Initially, the approach was simply to medicate me—they put me on Xanax right out of the gate. But after a year and a half of being stuck in that cycle of pills and receiving subpar psychotherapy, I eventually just threw in the towel. I gave up on the medication and the therapy altogether. Instead, I turned to reading and deep-diving into research to understand what was actually happening to me. Since then, I haven’t touched a single pill of that kind. Now, I handle everything on my own terms, taking it one step at a time.
And now, regarding my mother’s health struggles—insomnia, sleeping maybe three to four hours at a stretch for months on end, light sleep, constant nightmares... then there was the kidney failure, which led to a situation where, after every possible medical test my husband and I could undergo, it turns out we can't even conceive, despite trying for nearly two years now. On top of all that, she deals with constant nausea, stomach issues, and an immune system that is essentially non-existent.

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Robin Diaz4 said:Thank you for the recommendation. We've already started hitting complications; my father developed a fever, so his chemotherapy has been postponed indefinitely. I feel utterly wretched. By some strange stroke of luck, we managed to go from complete ignorance to a definitive diagnosis in just one week. Chemotherapy was supposed to begin immediately, and I truly held onto this flicker of hope that it would actually work. Yesterday, I could still find a way to be positive, but today? Today is nothing but despair.
I simply wasn't prepared for all of this—and honestly, I still am not.

No one is ever truly ready. It isn't as if those battling illness—or those of us standing by their side—are ever consulted on whether we have the capacity to handle the weight of it all. We aren't asked if we are prepared. It simply is what it is. And if we don't find a way to brace ourselves and face this head-on, we risk making things even harder for them. At the end of the day, our own feelings aren't the priority here. We aren't the ones who matter.

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Angela Wright said:You really need to pull yourself together and stop making this about you just because you don't know how to handle the weight of it all. Does anyone actually feel prepared for life's most fundamental, devastating blows? Of course not. Nobody finds this easy to deal with. If you truly intend to be his pillar of strength—if you want to come out on the other side of this without being broken yourself—you have to face reality head-on. You have to accept the situation exactly as it is, because there is no other option. You need to realize that this is happening to him, not you. You are simply caught in the wake of his storm. He is the one living with the diagnosis. He is the one facing a delayed chemotherapy treatment. His entire future is hanging in the balance, compounded by the crushing sense of guilt he feels toward everyone else in the family. At the end of the day, he is the one carrying the heaviest burden.
Don't turn this into a personal struggle or make things harder on him than they already are. Clear your head; stop overanalyzing everything and chewing on problems that haven't even happened yet. Just react to things as they unfold.
His chemo was pushed back because he’s dealing with some kind of infection, most likely. We just need to get that cleared up immediately so he can get back on track with his treatment.

Look, I won't pretend it isn't difficult, but then again, nobody ever promised us it would be easy. It's incredibly taxing, and people have to navigate these situations day by day. You'll find your way through it too.

Keep your chin up and find that inner strength.

🙏🙏🙏
People often ask me, "How do you keep going?" My response is always the same: what else is there to do?
I can't exactly opt out of this life and enroll in a different one... we are where we are, so let's just focus on helping and doing everything in our power for the ones we love.

So, I've got a consultation scheduled with Dr. Čepulić next week. I won't need to drag Dad along for this initial run-through; I can just bring my test results, and we'll figure out our next steps from there.

Robin Diaz4 said:I totally agree that this isn't primarily my burden to carry—it’s his. When I'm around my dad, I put on an Oscar-worthy performance. Nothing but positivity. I actually maintain that same facade for the rest of my family and friends too. No crying in front of him, period. Depression hits me hard once I'm finally alone, but then I just allow myself a moment to breathe; in front of him, that's just not an option.
Being an anonymous poster here, I can honestly admit that I'm actually a bit of a wreck.
Today, I bought him some beta-glucan to help boost his immune system. His doctor said it was fine for him to take and wouldn't cause any issues.

I used to play a part for my mother, too, but inside I was pure chaos, and she felt it deep down—especially when I spiraled toward the edge of anorexia in just six weeks. Look, you can't mask everything; parents have a way of sensing the truth. You have to settle your own internal battles first. Facing the reality of potentially losing a parent is a brutal, necessary rite of passage into adulthood.
Hang in there. Just get your head straight and hold on tight.

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I highly recommend picking up this book for yourselves. It’ll really help you navigate the chaos of everything happening right now.
On top of that, grab Schreiber's "against cancer." It’s essential for putting that whole diagnostic package into the proper perspective.
By the time I stumbled upon both of these, my own story was already well in the rearview mirror, but it felt great to find written confirmation for the realizations I’d reached through my own lived experience. Seriously, get them—they’ll help you skip a few unnecessary steps in the process.

I actually just checked this out from the library today. 😉

Angela Wright said:http://uploads.tapatalk-cdn.com/20170228/0d5389818cf00ac8eba45114a0ae0f7e.jpg
I highly recommend picking up this book for yourselves—it really helps you navigate the situation.
In addition to that one, you should also grab Schreiber’s "against cancer." It will help put everything regarding the diagnosis into the proper perspective.
I didn't actually come across either of these books until our conversation was long over, but I was honestly relieved to find such validation for the things I had realized through my own experience. A warm recommendation from me; they might help you skip a few steps in the learning process.

I think I've already suggested these books before...

Is there actually anything intelligent or motivating in them?

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ruggedfox11 said:I’ve already come across some of these books you're suggesting...

Is there actually anything smart or motivating in them?

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Absolutely. Especially that one book about fighting cancer.
Just do a quick Google search for the synopsis.
Like I said before, I didn't get my hands on it until much later in the game. If I had, a lot of things would have gone differently.
It has massive credibility because it was written by a doctor who actually battled the disease himself—specifically glioblastoma. He defied his diagnosis for nearly 20 years, which, frankly, is nothing short of a miracle given what that diagnosis usually entails.

Grace Ross20 said:Rachel Williams, if you don't mind, could you explain how your health took such a turn for the worse?
Lately, for the last ten days, my heart has been racing terribly, I'm struggling to catch my breath, and I feel like I'm going to faint. I think seeing my dad end up in the hospital with an embolism just completely broke me.

I just want to stabilize, find some peace, and accept things; I don't want to destroy myself permanently. How can I protect my mental health? When these symptoms start hitting me, I feel like I'm losing my mind.

It sounds like you're dealing with anxiety. I'm not sure if it ever peaks into full-blown panic attacks or if it's just a constant, low-level dread, but this is a frequent physical response to stress. Honestly, that intense pressure you're putting on yourself to "just calm down" and accept everything often backfires, driving even more anxiety. If you have the option to start psychotherapy, please do so as soon as possible.
I'm not sure where you're located, but the Mayo Clinic is truly excellent.

Angela Wright said:Absolutely. Especially regarding that book *Against Cancer*.
Do a little Google search for the book description.
As I mentioned before, I didn't get my hands on it until quite late in the game—if I had, things might have gone very differently.
It definitely carries weight because it was written by a doctor who actually went through it himself—he was diagnosed with glioblastoma, of all things. He fought that diagnosis for nearly 20 years and lived a full, high-quality life, which—honestly—is nothing short of a miracle given the prognosis.

I actually did a quick Google search the moment you suggested it. It looks like there might even be a version available for download. Right now, I’m mostly in the phase of trying to sift through all this filtered information—though, truth be told, I am planning to buy a physical copy; I noticed the Vatican Bank carries it. I really wish he would just read it himself, but apparently, he isn't much for reading quotes.

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Dad was actually in a better mood today than he has been at any point over the last three weeks. He even managed to eat more than usual, which feels like a small victory. His roommates were chatting with him about people they know who have the exact same diagnosis but have gone on to live healthy lives for years. Even if those stories are a bit exaggerated, they were exactly the kind of encouragement he needed right now. I also made it halfway through reading "Against Cancer." It’s actually a relief to see that so many of the foods recommended in the diet plan are things Dad genuinely enjoys eating.

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Robin Diaz4 said:Today, Dad was in a better mood than he has been in the last three weeks. He even managed to eat more than usual lately. His roommates in the ward were telling him stories about people they know who have the same diagnosis and lived for many years afterward. Even if those stories are just tall tales, they probably did him some good. I've read halfway through "against cancer." It’s actually a relief to see that the recommended diet includes a lot of foods Dad actually enjoys eating.

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My mother had lung cancer with metastases in her lymph nodes and two tumors, each growing alongside the carotid artery in her neck, plus three spots on her liver. Today, two years and eight months later, her lungs are just as affected as they were at the start, but her liver and all her internal organs are clear; the new metastases are only in her bones... the doctor treating her at the Mayo Clinic told her plainly that she couldn't explain how it happened this way, calling her a phoenix...
Doctors can talk all they want about averages and statistics, but your father is your father, not just some number in a sequence... how one settles things mentally is a massive factor... I tease my mom that this is the first time her being as stubborn as a mule has actually paid off, because she simply refuses to let the illness win.😁

It looks like I’m finally starting therapy today. 🙂

Robin Diaz4 said:It looks like he’s finally starting therapy today. 🙂

Best of luck!!
Once he gets moving with it, things should start feeling a lot lighter—even if it's just that mental relief. :-)
At least that was certainly the case for me!

Angela Wright said:Absolutely. Especially regarding the book *Against Cancer*.
Do a little Google search for the book description.
As I mentioned before, I didn't get my hands on it until quite late—looking back, there are many things I would have done differently.
It definitely carries weight because it was written by a physician who actually battled the disease himself—and we aren't talking about anything minor, but a full-blown glioblastoma. He fought against that diagnosis for nearly 20 years, and honestly, what he pulled off is nothing short of a miracle given the circumstances.

I have to admit, I just can't seem to put this book down. :-)

Thanks!

He’s already started picking fights with the nurses, which means he’s finally starting to feel like himself again! 😁
Is it actually normal to be absolutely parched after chemo?

Robin Diaz4 said:He’s actually starting to argue with the nurses—which honestly means he’s finally getting back to his old self! 😁
Is it actually normal to feel incredibly, parched-to-the-bone thirsty after chemo?

That’s great news! :-D
Yes, it is completely normal. Just make sure they stay on top of their fluids to protect the kidneys—and hopefully, they can get discharged from the hospital soon. That’s what the doctors told me when we were going through this.

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Man, I’m dealing with a seriously heavy situation right now!

I live in a house with five people, including my uncle, who has been sick since the day he was born. He’s been diagnosed with cerebral palsy, type G80.0. He deals with spastic paresis in his arms and total plegia in his legs, plus he can't speak at all. Since he's hit 65, his vision has started failing him too, so honestly, I think he needs regular medical supervision. With a condition like this and at his age, it’s just not optional anymore, you know? Up until now, he hasn't had any massive health scares.

The problem is, my parents don't seem to see how serious this actually is. They just want him to stay here at home. But is there even a way to get someone like him into a facility? Honestly, I feel like a specialized center for people with developmental disabilities would be the best fit. He's lived with us his entire life, but things are changing.

Has anyone here actually dealt with these kinds of care facilities? And what kind of prices are we talking about for someone with such a severe case?

shadowfalcon21 said:I’m dealing with a really heavy situation right now.

I live in a five-person household, which includes my uncle. He’s been sick since the day he was born. His diagnosis is cerebral palsy, specifically category G80.0. He deals with spastic paresis in his arms and plegia in his legs. He’s non-verbal. Since he’s hit 65, his condition seems to be declining, and honestly, I think he needs regular medical supervision. Given his condition and his age, constant professional oversight feels like a necessity. Up until this point, he hasn't had any major health crises.

The problem is, my parents don't seem to see this as a serious issue. They want him to stay here at home. Is there any kind of placement available for someone in his condition? I feel like a specialized facility for people with intellectual disabilities would be the most appropriate setting. He’s lived with us his entire life.

Does anyone have experience with these kinds of facilities? What kind of costs are we looking at for a high-needs case like this?

To be perfectly blunt, I disagree with your take that a facility is the best move for him—especially if he’s actually doing okay physically and has caregivers who provide decent care without treating him like a massive burden that ruins their quality of life. Even if he can't speak and has some level of cognitive impairment, he still feels the connection to his home and the people closest to him. Tossing someone like that into an institution, ripping them away from everything they know just because it's convenient, isn't the smartest move, and frankly, it isn't the most humane way to handle it.
I get that you're worried about your parents, but their current stance was their choice when they were making their own life plans. Many parents with children facing complex diagnoses spend their whole lives preparing them for a transition to a facility at a specific point. That transition should have happened gradually during his younger years so he could adapt. Doing it all at once now is, in my opinion, completely counterproductive.

Pricing for placement depends entirely on whether the person is fully dependent or somewhat independent. Costs can reach up to $3333 in higher-end private facilities. Generally speaking, those places won't match the level of care he gets at home, sometimes even from a purely medical standpoint. They just "get through" the job.

Angela Wright said:if they're in good condition, they've got decent care and caregivers

How am I supposed to know if he’s actually doing okay when he hasn’t even stepped foot in a doctor's office? The only thing I’ve noticed for sure is that his vision has gone downhill big time over the last year. It’s a whole family effort—my mom, my brother, me, and my dad (in that order, since we’re all rotating shifts to handle it). He gets decent care, don't get me wrong, but I honestly think things could be better, especially since he's getting up there in years.

Angela Wright said:they don't feel like such a huge burden that it ruins their own quality of life

Look, as much as I hate to admit it, we can't even have guests over at the house sometimes because he can react pretty unpleasantly. It all depends on how he interprets things in his own head. He can kind of understand what we're saying (to whatever extent), but I'd describe him more like a five-year-old kid. He can eat by himself if someone preps the food, and he can handle using the bathroom on his own.

Angela Wright said:he definitely feels and experiences his home and the immediate family members closest to him and their love.

I agree with you there. But I really think that part can be figured out too.

Angela Wright said:$3333

Per month?