Resources and support for families dealing with cancer and serious illness

I haven't shared much with certain family members for specific reasons. They tend to be tactless and completely insensitive (well, maybe not entirely, but still...):
As soon as she found out, she immediately started asking how Mom was doing. I told her everything was fine, thanks, and then she just kept going—telling me that this person died, that person passed away, someone’s funeral is tomorrow, someone else is in agony, and so on.

Ah, family... what a disaster. They truly believe they're being helpful when they create such chaos. It would be much better if everyone could just be handed a written manual on how to behave around a sick person and what topics are actually appropriate to discuss. This goes out to my aunt... if she happens to read this, she’ll know exactly why. Love you, Auntie... [/COLOR]

cosmicsurfer7 said:Hello everyone,
I looked into ImmunoMax here in the States since it supposedly won some awards, but they just treat it like any other supplement. They seem much more focused on beta-glucans at a maximum dose of 2.5 mg per kg of body weight daily. Ultimately, the choice is ours.
I got in touch with Dr. Stakis from Cytomed. Does anyone actually know how his products work?

BELIEVE, BECAUSE FAITH FREES AND STRENGTHENS!!!

Thanks for the reply.
For now, Mom is recovering beautifully. She’s eating again and HAS AN APPETITE!!!
I'm shouting because she hasn't eaten for five months... so this is a massive win and motivation for us moving forward. She started taking Aloe vera gel. She gets her discharge papers from the hospital this Monday, and then chemo begins...
Hang in there, everyone....

Sandra Evans13 said:Thanks for getting back to me.
So far, Mom is doing great during recovery. She’s actually eating again—and she HAS AN APPETITE!!!
I’m shouting it from the rooftops because she hasn't eaten in five months... so this is a massive win and a huge boost for us right now... She started taking some Aloe vera gel, too. She should be getting her discharge papers from the hospital this Monday, then it's straight to chemo...
Hang in there, everyone...

God bless you, Sandra Evans13,
that's fantastic news—I'm so glad your mom is feeling better!

We definitely need more good news like this!

Sending my best to your mom and the whole family!

🙂 Hang in there!

I’m starting to fear we’re reaching the end of the road with my mother. They’ve started putting her in diapers because she’s lost bladder control, and she can barely even manage to eat—I brought her some homemade soup yesterday, but she just sort of poked at it aimlessly. Today, she called me sounding weaker than ever, complaining about a burning sensation when she urinates. They rushed her off for blood work to see if the tumor has spread any further (I’ll have to check on that once I get to the hospital). On top of all that, she looked jaundiced yesterday, with yellowing under her chin and eyes; I suspect her liver is slowly giving out, and the issues with her urine suggest her kidneys might be failing too. 👎
The doctor—the one who seems determined to discharge her as quickly as possible—is insisting she’s been in the hospital far too long. Tomorrow, my brother and I are sitting down with the specialist to figure out an urgent placement in a skilled nursing facility or a rehab center. There is absolutely no way she can come home in this condition; she wouldn't survive a single day.
The healthcare system here is a complete joke. My mom’s uncle was sent straight home from intensive care right after prostate surgery; he’s completely immobile, while his wife is left struggling around with a walker. Honestly, you don't even see this kind of mismanagement in places like Albania. 😠
I’m genuinely terrified to go to the hospital, because I’m scared of what state I’ll find her in.

Amanda Miller69 said:I’m honestly terrified because I think my mom is reaching the end. They started putting her in diapers because she can't hold any urine, and she has zero appetite—I brought her some homemade soup yesterday, but she just sort of messed with it. Today she’s calling me, sounding weaker by the minute, complaining about burning when she goes. They rushed out to grab blood samples to see if the cancer has spread further (I'll have to ask once I get to the Mayo Clinic), but besides that, she was looking yellow under her chin and eyes yesterday. I think her liver is slowly giving out, and with the urine issues, her kidneys might be failing too. 👎
The doctor—the one who kept trying to discharge her—is saying she’s been in the hospital way too long. So tomorrow, my brother and I are sitting down with the professor to figure out an urgent placement at a nursing home or a rehab facility. She definitely can't go home in this condition; she wouldn't make it through the day.
The healthcare system here is a joke. My mom's uncle was sent straight home from the ICU right after his prostate surgery; he can't even move, while my aunt is basically shuffling around with a walker. I swear, you don't even see this kind of mess in Albania. 😠
I’m honestly scared to even walk into the hospital right now, just dreading what state I’m going to find my mom in.

DEAR Amanda Miller69, you are totally panicking... just breathe... talk to the doctors in a way where they realize they have no choice but to keep your mom in the hospital or move her to another proper medical facility...
Hang in there, you've got this!!!

Linda Peterson37 said:Hey everyone,
I’ve been spiraling into this dark headspace lately. Honestly, part of me feels like I shouldn't even post these thoughts because I don't want to bring anyone else down, but there are just a few things weighing on me that I need to get out there..
My dad is going through radiation right now, and to be honest, he hasn't been doing great the last few days. But I really believe that once the radiation is over, we'll see that it worked and helped him enough to turn things around. He also had chemo yesterday, and I think all of that combined just totally drains the body, which is probably why he's feeling so rough lately.

I was reading where Ivanna mentioned in some posts how her mom’s illness acted like a filter for the people in her life, and man, I totally feel that. It makes me want to say how much I thank God every single day for my family—for how we look out for each other, care, and love one another. I'm so grateful for my mom and my brother, who help me out while I try to help them, just so we can all stay somewhat sane. And then there's my husband, who is just so incredibly understanding of everything I'm going through. I honestly don't know if I'd have half his patience, love, or attention if the roles were reversed; he looks at me with the same love whether I'm happy, sad, a total mess, or completely desperate. Then there's my best friend who takes me for walks, makes me laugh, cheers me up, and gives me a hug without me even asking—she's just always right there. Plus, my small but amazing circle of friends who are available anytime, day or night, and this community here where I find endless empathy and support.
When I sit back and look at it all written out—man, who else do you even need? It's true. I don't need anything or anyone else, besides obviously wanting my dad to get better. But I'm only human, and certain things just hit hard. It's tough not to let them get to you. I'm mostly thinking about certain people in our extended family circles who haven't even called in months to check on my mom. Or people who call but don't even bother asking about my dad. Or those folks who finally reach out after ages just to lecture my mom on what she "should" be doing. Then there are the ones you run into at the grocery store who act all curious and concerned, yet they never actually call or stop by. Or people telling my mom she needs to reach out to certain relatives to mend old family ties that were broken a long time ago... yeah, it's just a lot.
And the more I dwell on it, the more depressed I feel....
Sending love to you all.

Honey, don't let those people's flaws or weaknesses get under your skin... You're lucky to have your immediate family standing together, supporting each other, and having a husband who is so selfless. Everyone else doesn't fit into that category, and they can be good or bad...

My mom is getting ready to start chemotherapy, and honestly, she’s so frail right now that I’m terrified she won't be able to handle the toll it takes on her body. I've been reading through some of your experiences here, and I noticed people mentioning that things like mints and popcorn can really help with the side effects. Currently, she’s sipping on Aloe vera, green tea, and some natural propolis, along with fresh beet and carrot juice alongside her regular meals. Do you think this is enough support, or should we be looking into adding anything else to her routine? 🤷

There's one more thing weighing on my heart... my mother isn't exactly what you'd call a "fighter." She never really was. She has always struggled with depression and a tendency toward self-destructive tendencies. My sister and I are pouring every ounce of our energy and love into her care, trying to balance everything with our own jobs and families just to make sure she has what she needs. She has become so dependent on us that she doesn't even track whether she’s taken her medication or not. We try to remind her every single day that SHE needs to find that inner strength to fight for her recovery, but sometimes it feels like that spark just isn't there. We haven't been fully transparent about the prognosis yet—that the melanoma has spread and the surgeon mentioned she might only have about a year left. We're just so afraid that knowing the truth would completely break her. It might break me, too.😢

I am incredibly close to her, and truly, every single day I get to spend by her side feels like a gift from God. I'm a very emotional person, so seeing her this weak and ill is absolutely devastating. The medical outlook has left me feeling quite hopeless, even though it's only been 15 days since her surgery, and I'm trying my best to take everything I read in these forums with a grain of salt...

Linda Peterson37 said:When I look at it all laid out like this and really sit with the thought—well, who else do I actually need? It’s true, I don't need anyone else or anything more, other than, obviously, for my dad to get better. But I'm only human, and certain things just get under my skin; it's hard to stay totally indifferent to it all. I'm mostly talking about those people in our extended family circles who haven't even bothered to call my mom in months to check in, or the ones who finally do call but don't even bother asking how my dad is doing. Then there are the people who show up after ages just to lecture my mom on what she should or shouldn't be doing, or the folks you run into at the grocery store acting all curious and concerned when they never actually pick up the phone or stop by. Or the ones telling my mom she ought to reach out to certain relatives despite those family ties having been severed years ago, and so on, and so forth.
And the more I dwell on it, the sadder I feel...
sending my best to everyone.

Dear Linda Peterson37, you aren't alone in dealing with this kind of thing. 🙂
I have to be honest—and it’s probably high time I admitted it—that many people in my inner circle have essentially turned into mere objects to me. I'm not angry at anyone, and I don't hold any bitterness; I just realize I have this opportunity now in life to "test out" everything I've ever read or wondered about, and for that, I am endlessly grateful. Truly, from the bottom of my heart, I'm coming out ahead here because God blessed me with a mother who drives me absolutely crazy. I've managed to pull out strengths from within myself that I never dreamed I possessed. I can joke about it, I can laugh at her little outbursts, and later on, I can laugh at myself. That's honestly the best part.😁
Don't let it make you sad. 🙂

I believe those people are simply doing the best they can. They just aren't capable anymore, whether that's due to selfishness, fear, or who knows what else. We are the ones who have been given the chance to put this to the test, and we are passing. We are moving right past those people. Maybe some of them catch up to us, maybe they pass us quickly, maybe they don't.
I've realized that by getting upset over it, I'm just standing still. I'm wasting my time. Sure, occasionally I lose my mind, but it's brief; I just process it through my system and move on without looking back. If I mess up, I mess up.
In the end, I almost feel bad for them because I've realized that those jerks have actually helped me more by doing nothing concrete or useful, but by simply staying away. They are providing the raw building materials while I build myself up.

rustyscout31 said:My mom is facing chemo soon. She’s incredibly frail, and I’m honestly terrified she won't be able to handle it. Looking through some of the replies here, I saw people mentioning mint candies and popcorn can help. Right now, she’s sipping on Aloe vera, green tea, and some raw propolis, along with natural beet and carrot juice alongside her regular meals. Is that enough, or should we be looking into something else? 🤷

And one more thing... my mom isn't exactly a "fighter." She never really was. She's always struggled with depression and a tendency toward self-destruction. My sister and I are pouring everything we have—all our energy and love, on top of our own jobs and families—into making sure she gets whatever she needs. She’s become so reliant on us that she doesn't even keep track of whether she’s actually taken her medication. We tell her every single day that SHE needs to find that inner strength to heal, but it feels like she just doesn't have it in her. We haven't told her the full prognosis yet—that the metastases have spread and the surgeon said she might only have a year left. We're just afraid that knowing would break her. Just like it's breaking me.😢

I'm deeply attached to her; every day I get to spend with her feels like a gift from God. I'm a very emotional person, and watching her this sick and weak is devastating. The medical prognosis sent me into a tailspin, though since it's been 15 days since her surgery and I've read so much on this forum, I’m trying to take everything with a grain of salt...

Honestly, all of that might actually be overkill. Just try things out and see what settles well with her. I've heard that overloading on supplements can actually strain the system and mess with how things function.
As for my mom, she isn't doing chemo at the moment; she’s currently taking a break from the raw propolis and is drinking noni juice instead. She's also on a B-complex and various other vitamins, and I make sure she eats as healthy as possible.

Regarding the rest of it—you’re going to have to carry that weight for her. That’s just how it works here in the States. It’s almost been a year since my mom was diagnosed. Back then, this time felt like some distant, unimaginable future. And yet, here we are—time has flown by for both of us. I am certain today that Mom is still with us partly because of the sheer amount of energy my brother and I poured into her without even asking permission. We were running ourselves ragged, but we never backed down. One of us would hit a wall, and the other would pull him through. No meetings, no long discussions required. When you just commit, it happens.

Maybe your mom doesn't have that inner strength herself, but you and your sister certainly do. Or maybe she does have it, and she just needs you to help her find the way back to it.

Good luck. 🙂

Amanda Miller69, hang in there. 🙂

Nancy Thomas18, don't let them get to you! 🙂

To everyone here, whether you just joined or have been around for a while, stay strong, you brave souls.👍

Melissa Kim45 said:Amanda Miller69, hang in there. 🙂

Nancy Thomas18, don't let them get to you! 🙂

Everyone—newcomers and veterans alike—just stay strong, you brave souls.👍

I'm with you all the way, wishing everyone tons of 🙂 and 😘!

I wanted to jump in here and join this conversation too.....

It’s been five months of pure agony, and it feels like we’re approaching the end—the worst part....

My cousin, born in '84, is fighting a very serious illness... here is how everything has unfolded.

Back when he was about 14 or 15, he dealt with some kind of bowel disease—I think it was the same condition Dennis Latin had, involving some sort of intestinal perforation or something similar.
After undergoing treatment and an operation to remove part of his colon,
he went on to live a relatively normal life, provided he stuck to his prescribed medications and a strict diet (no alcohol, no deli meats, no prosciutto, nothing spicy, etc.), because his doctor told him back then—which sounds absolutely terrifying in hindsight—that he had the perfect foundation to develop cancer later on.
Unfortunately, at the time, no one (neither him nor his family) really grasped the gravity of that warning.
Everything seemed fine until December of last year, when my cousin started complaining about back pain (!). After days of testing in hospitals across two different cities, doctors at the Mayo Clinic finally discovered that he had metastases in his spine, which have left him unable to walk and are causing him immense pain.
Following two surgeries, where three vertebrae were removed and replaced with silicone implants, and four or five rounds of radiation, they believed the spinal metastases had been cleared.
But the real problem was, they still hadn't found the primary source....
After a PET scan, they discovered a 1.5 cm tumor at the junction of the small and large intestines, along with two lung metastases (roughly 1.2 mm).
The decision was made to start chemotherapy. However, because his liver function is so poor, they were hesitant to proceed, as the doctors feared his body simply wouldn't be able to handle it.
As it stands now, he is on his fourth round out of six scheduled treatments; he’s taking medication for his liver, and they’ve recently added bone-strengthening drugs to his regimen.
There is also a possibility that the spinal metastases spread further while he was undergoing chemo (he’s actually feeling pain in his neck now?).
His condition is dire, and I’m starting to lose hope....
I do have a few questions:
1. Why wouldn't they just perform surgery to remove the primary tumor?
2. He still can't walk, and the mental toll on the whole family is devastating; I'm sure most of you know what follows chemotherapy (the nausea, the diarrhea, the headaches)...
How can we help him through this?
3. And as if this endless streak of misfortune weren't enough:
his mother has just been diagnosed with multiple sclerosis, and she’s starting her own treatment now.....

4. Is there any hope left?

Best to everyone, and sorry if my thoughts are a bit scattered.

Mom finally showed a spark of life yesterday; I suppose her dose of self-pity finally wore off.
Dr. Smith finally made an appearance today and announced that Mom will be heading home in just a few days, regardless of how much mess she makes or her complete lack of mobility. He’s putting her on antibiotics and insisting she stays hydrated to clear things up. Yeah, right. Per her request, he’ll write a recommendation for a rehabilitation center, so we can wait until she's cleared for discharge. Naturally, I have to arrange all the transport myself. If nothing else, we might try the "pay upfront" option, so now I'm frantically searching for a facility that specializes in this specific type of illness and physical therapy. Does anyone happen to have a connection somewhere?
My aunt has a contact over in Springfield, but that's a geriatric ward, and honestly, I think it would send Mom into a total depressive spiral.
I am terrified of what happens when she actually gets home. I can only get four days of caregiver leave 😕, which—helloooo?—is nowhere near enough. And I certainly can't use my vacation time because the colleague covering my shift (I hold a management position) is getting married, and obviously, I can't screw him over... plus, neither of us can take time off at the exact same time.

rapidseal49 said:Just wanted to jump in on this conversation too.....

The agony has been going on for five months now, and it feels like the worst part might be coming...

My cousin, who’s 40, is really sick... here’s what happened.

Back when he was about 14 or 15, he had some kind of colon disease—I think it’s the same thing Dennis Miller dealt with—something involving a perforation or whatever.
After treatment and surgery to remove part of his colon,
he lived a totally normal life, just sticking to his meds and a strict diet (no alcohol, deli meats, prosciutto, spicy food, etc.) because his doctor told him back then (which sounds so terrifying now) that he had a huge risk factor for developing cancer.
Sadly, at the time, nobody—not even him or his family—really took it seriously.
Everything was fine until last December when my cousin started complaining about back pain (!). After days of testing in hospitals across two different cities, they finally found out in Washington, D.C., that he had spinal metastases that were preventing him from walking and causing all this pain.
After two surgeries, having three vertebrae removed (they put in silicone ones instead), and four or five rounds of radiation... they thought they cleared the spinal metastases.
But, they still hadn't found the primary source...
After a PET scan, they found a 1.5 cm mass where the small and large intestines meet, plus two lung metastases (about 1.2 mm).
They decided on chemo. Because his liver is in such bad shape, he could barely handle it; the doctors were worried his body wouldn't hold up.
Basically, he’s currently on his fourth round out of six prescribed, taking liver meds, and now they've added bone medication too.
Apparently, there's a chance the spinal metastases spread while he was doing chemo (he's feeling neck pain now?).
Things are looking really grim, and I’m starting to lose hope....
I have a few questions though:
1. Why didn't they just do surgery to remove the primary site?
2. He still can't walk, and the mental toll on the family is devastating. I'm sure you all know what happens after chemo (the nausea, the diarrhea, the headaches)...
How can I help him?
3. And as if things weren't bad enough, it keeps going:
His mother was just diagnosed with MS, and she’s starting treatment now too.....

Is there any hope?

Hi everyone, sorry if this is a bit all over the place.

Your story really touched me. 24 years... that is just heartbreaking.
It’s wonderful that you’re trying to help, and I can only imagine how heavy things feel for your whole family right now.
There aren't any doctors among us, as far as I know, so it's hard for anyone here
to give you concrete medical advice. It’s true that with Crohn's disease, there’s a massive risk for colon cancer, and I know check-ups are usually pretty frequent because of that, so I don't quite get how it wasn't caught sooner. But, what's done is done, and there's no point dwelling on the past.
If I understood you correctly, the PET scan didn't show liver metastases,
just the 1.5 cm spot in the intestine and the 1.2 mm ones in the lungs, and everything else is just suspicion. If that's the case, to a layperson like me, it doesn't sound quite as hopeless. He's so young, and being immobile like this is so hard... maybe it's worth seeking a second opinion based on his results.

I know this is all so difficult. Just stay by his side as much as he needs, and try to breathe a little optimism and hope into him. Maybe share your plans or intentions with him—when someone is sick, especially when they can't move, it means so much to see that someone is fighting for them and still searching for answers, no matter how tough things get. Just keep helping him as much as you feel able to, as long as he and the family are okay with it.
Hang in there!

Amanda Miller69 said:My aunt has a connection over in Springfield, but it’s basically a geriatric ward, and honestly, I think my brother would spiral into a total depression if he had to deal with that.
Personally, I'm terrified of what happens if she comes home to stay—I just won't know how to handle it. If I try to take leave to care for an immobile parent, I might get exactly four days 😕, which, hello? And I can't exactly take vacation time either; the guy covering my management shift is getting married, so I can't screw him over, and there's no way we can both be out at the same time.

My uncle ended up in a facility near Springfield after his second stroke, and he actually liked it—they have walks along the river, and the medical care is surprisingly decent, which isn't exactly common for state-run homes, plus it's not just a sea of elderly people. In my opinion, it might be worth a shot; if you don't have any other options right now, maybe move your mom there temporarily while you scout for a better nursing home or a rehab center.

I know you can't get sick leave or vacation time for your mom. When I was dealing with my dad, I exhausted every possible option, pushing my doctor to write whatever diagnosis would qualify me for leave—and even then, the most I could squeeze out was 21 days, and that was on my own record. For my father, I couldn't get any leave at all.

Good luck with everything.

rustyscout31 said:My mom is facing chemotherapy soon. She’s incredibly frail right now, and I’m genuinely terrified she won't be able to handle the toll it takes on her body. Looking through some of the advice here, I saw mentions of menthol candies and popcorn being helpful. Currently, she’s sipping on Aloe Vera, green tea, and native propolis, along with natural beet and carrot juice alongside her regular meals. Is this sufficient, or should we be looking into adding anything else to her regimen? 🤷

One more thing... my mother isn't exactly a "fighter." She never was. She has always struggled with depression and self-destructive tendencies. My sister and I are pouring everything we have—all our energy and love—into making sure she gets what she needs while balancing our own lives and families. She has surrendered herself to us so completely that she doesn't even track whether she's actually taken her medication. We tell her every single day that SHE needs to find that inner strength to heal, but it feels like she just doesn't have it in her. We haven't shared the full prognosis with her yet—that the metastases have spread and the surgeon mentioned she might only have a year left. We're terrified that knowing the truth would simply break her. Just like it's breaking me.😢

I am deeply attached to her; every day I spend by her side feels like a gift from God. I'm quite an emotional person, and watching her struggle with this illness and her physical weakness is devastating. The doctor's prognosis sent me into a spiral of despair, though since it's been 15 days since her surgery, and given everything I've read in these forums, I'm trying to take everything with a grain of salt...

Honey, please try not to dwell on the prognoses. Two years ago, my mother was diagnosed with advanced ovarian cancer, and they gave her a six-month window. Three weeks ago, she underwent surgery for terminal-stage cancer, and the doctor actually gave her another two to three years—which could easily turn into five or more, depending on her resilience. My mom has always dealt with depression, and her diagnosis came just eleven months after my father passed away suddenly. They were inseparable, and I honestly thought she would just give up and follow him, but that was when I realized just how much fight she truly has in her. It took constant support, reassurance, and a fair amount of pushing, but she is moving forward. Over these last two years, she’s traveled abroad, gone to the theater, attended concerts—she's lived. I hope that once she recovers from this surgery, she can get back to that lifestyle, even though this particular procedure was brutal (it lasted 12 hours, they had to remove half her abdomen, and she ended up with a colostomy bag...).
Just keep encouraging her, both you and your sister. Chemotherapy side effects are brutal. The key is finding things to bolster her immune system (native propolis, BioBran, Megamin if you can track it down, Brocolin—of course, don't give her everything at once; just pick what seems to agree with her). For my mom, nausea and loss of appetite were managed quite well just with basic menthol candies. I'll be keeping my fingers crossed for you all.👍

Amanda Nelson54 said:My uncle actually stayed at a facility in Springfield after his second stroke, and he really liked it. They have nice riverfront walks, and the medical care is surprisingly solid—which, let’s be honest, isn't exactly the standard for state-run nursing homes. Plus, it's not just filled with the very elderly. So, if you ask me, it might be worth looking into. If you're currently out of options, maybe consider moving your mom there temporarily while you hunt for a more permanent solution, like a specialized rehab center or a spa resort.

I know from experience that you can't just take medical leave or vacation time to care for your mother. When I was dealing with my dad, I exhausted every single diagnosis and excuse my doctor could possibly write down to get some time off. Even then, I could only stretch it to about 21 days, and that was all under my own name; I couldn't qualify for any leave specifically to care for him.

Best of luck!

If nothing else, my brother and I are going to sit down and have a serious talk with Mom. My biggest fear is that she'll interpret this as us trying to get rid of her, which might make her resist the move or refuse to settle in. Tomorrow, I'm also going to try to track down a professor I know. Since he's essentially the head of abdominal surgery, he likely has the right connections to pull some strings regarding placement—even if we end up having to drive her there ourselves.
It's heartbreaking, seeing her health decline like this.👎

Hey there, old friends and new🙂

Has anyone here dealing with brain tumors experienced facial twitching on one side?
What should I be looking out for?
Over the last two or three days, the left side of his face has been spasming several times a day...

Sending my best to everyone, hang in there🙂

Goleo, Nipril66, Sandra Evans13, Felix and everyone else, thanks for the support 🙂🙂. It’s tough being in our situation, and I don't need the extra weight of broken family dynamics or relationships that haven't worked for years. I'm becoming immune to all of it. These days, I just say what I think. I used to sugarcoat things
just to avoid hurting people, but honestly, who cares what they think of me? Who's actually looking out for my feelings or my family's? Anyway, I won't dwell on it; it's just a waste of breath and energy on things that don't matter..

Now that Dad has been in the hospital for 14 days and we've been spending a lot of time there, I'm seeing a lot of things. It makes me realize that psychological support for patients should be mandatory!!! When someone is stuck in bed for ten days with something "minor," like a bad flu, they get sensitive and irritable. Imagine how much harder it is with serious illnesses where you're constantly facing fear and uncertainty. People don't just need a kind word or a smile; they need professional help to cope. I often see people's mental state or their physical appearance—or both—change drastically, and it's shocking. It seems so hard for people to accept, and yet nobody tells them how to handle it...

As for our healthcare system, I don't have anything nice to say. Too many things are broken..👎I won't even list them because my blood pressure spikes just thinking about it, but things need to change immediately. They really do. Regarding medical leave, I wasn't able to secure any for Dad either.

Amy Hayes28 said:Hi, old friends and new.🙂

Has anyone here dealt with facial twitching due to brain tumors?
What should I expect?
For the last two or three days, the left side of his face has been twitching several times a day...

Sending love to everyone, stay strong.🙂

Yes, we went through that, and it was actually the start of Dad's decline. It began with the face—just once every few days at first, then more frequently, sometimes multiple times a day. After that, the entire left side started seizing up... If you want, I can send you details via DM.

Stay strong, brave souls!!!!

Amy Hayes28 said:Hey there, old friends and new.🙂

Has anyone here dealt with facial twitching in someone with a brain tumor?
What should I be looking out for?
For the last two or three days, his left side has been spasming several times a day...

Best to everyone, hang in there.🙂

Those are tremors. It’s also possible they’re actually seizures. Is your dad currently on an anti-epileptic medication like Phemiton?

@everyone

You guys aren't showing up to the association forum nearly enough.☕ You really need to start posting over there more often so we can turn these shared threads into a real database. If we do that, every newly diagnosed person will have everything they need in one central location instead of wandering around aimlessly. It seems like everyone has just grown attached to this specific thread, so you mostly stick to it. A few people just copy-paste their stuff elsewhere, but most of you are bypassing the main site entirely. That wasn't the plan when we all agreed we needed a dedicated "hub" to tackle these issues.