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

Grace Ross20 said:Time really does fly by, especially when you feel like you're just counting down the days.
It’s so obvious how much you loved him—and honestly, that kind of love? Neither death nor time can ever strip it away from you. He’s going to live on through you, forever.

We all carry our own stories, don't we? And there’s really no way to answer that haunting question of "why me?" Maybe there's a profound reason behind it all, or maybe there isn't. If anything brings me comfort amidst this heartache, it's the fact that I've grown up alongside all of this; it has made me stronger and far more resilient against life's trivial nonsense.

I truly hope you find a way to navigate this pain—that eventually, this ache transforms into pride and beautiful memories. I want you to be able to live fully again, to laugh and find joy in the little things, all while never forgetting that you were part of such a magnificent fight.

Wishing you so much luck, dear 😘

Thank you 🙂, I am wishing you so much strength! Angela Wright and you too 🙂. Words like yours mean the world to me—I find myself coming back to your messages over and over again, and they truly make things a bit easier.
Lately, I've been spending a lot of time looking at our old photos, just thinking and reminiscing about everything. I was visiting a friend abroad recently, which kept my mind occupied with so many things, but now that I'm back home, everything feels heavier... especially with the holidays approaching...

boldridge3, please accept my deepest condolences.

boldridge3 said:Here I am again with more bad news. My mom passed away on Wednesday. She had come home from the hospital on Tuesday after finishing her radiation and everything, and then she just fell asleep overnight. To be honest, I didn't experience any overwhelming shock; I was expecting this given the circumstances. Every single day, I told her how much I loved her, and she told me the same. I even told her that when she passed, she could always "visit" me. I prayed to God that she wouldn't be in pain, that she wouldn't suffer, and that she would have the strength to stay with me and my sisters. I never prayed for her to get better because, frankly, I felt that was impossible given her diagnosis. I feel so incredibly peaceful yet strangely cheerful at the same time, simply because I know I did and said everything I wanted to before she left us. Truly, God saw fit to let her pass without pain or suffering, and He gave us a sense of peace. It might sound shameful, but I didn't shed a single tear at the funeral, nor did my sisters. In the evening, we sat together and laughed harder than we ever have before—it was an indescribable feeling. Mom always used to say she didn't want people mourning her, but rather laughing in her honor. I don't know if that’s unfair of us, but I just don't understand why there isn't that crushing grief right now; we are all acutely aware that she is gone... perhaps the sadness will hit later, along with the realization of her absence... I just don't know. During her illness, I gathered so many of her memories... from photos to videos. When we cut her hair after it started falling out from the chemo, I saved it all as a keepsake for when she's no longer here. I also recorded our phone conversations on my phone, so that in those moments when I miss her, I can just play a recording or a video and hear her voice again. I'm reflecting on everything, and I think some things just have to happen. I was unemployed for five years, and then just two months ago, I finally started working—Mom, of course, cried tears of joy. My marriage had been so difficult for ten years that I was ready to call it quits, but over the last two months, everything has turned around beautifully. So, I truly believe everything happens for a reason. To everyone fighting this disease or caring for a loved one: I wish you so much strength. Leave the rest to God, because no matter how we turn, He always has a plan for us.

Dear boldridge3, that idea about saving the hair... it's just beautiful. You've inspired me to save Dad's too, though his is short right now; I'll wait until it grows out a bit. 🙂

You will certainly cycle through emptiness, grief, happiness, and then grief again, but that’s just life—it's constant movement. What else is left for us to do but live, love, and mourn? I am so glad to hear your marriage is improving; perhaps you'll feel a sense of relief now and finally be able to devote yourself to the things you love.

We've decided to bring Dad home, so Mom and I will find a way to care for him, even though he's currently going through a phase of delirium and seeing things in the room that aren't there. I'm hoping a higher dose of Decortin will help clear that up.

Who should I reach out to for a wheelchair, a pressure ulcer mattress, and everything else we might need?
I'm not sure if it's better to use adult diapers like they do in the hospitals, or if he should use a commode?
He isn't mobile on his own, but with our help, he could manage. I just want him to feel a bit more dignified.

Grace Ross20 said:Dear boldridge3, this whole thing with the hair... man, it’s beautiful. You actually gave me an idea to prep my Dad's hair too; even though it's short right now, I'll wait until it grows out a bit a little longer.🙂

You're definitely going to cycle through the emptiness, the grief, the joy, and then the sadness again, but that’s just how life works—it's constant flux. What else is there left to do besides live, love, and mourn? I'm glad things are looking up with your marriage; maybe you'll finally feel some relief and be able to focus on everything you actually enjoy.

We've decided to bring Dad home, so Mom and I will find a way to care for him, even though he's in one of those phases of madness right now where he sees things in the room that aren't even there. I'm hoping a higher dose of Decortin will clear that up.

Who should I reach out to for a wheelchair, an anti-decubitus mattress, and all the other gear we're going to need?
I'm also torn on whether I should stick to diapers like they do in the hospital or if using a commode would be better.
He can't move on his own, but with our help, he might be able to. Just thinking it might make him feel a bit more dignified.

The local Hospice Friends Association lends out hospital beds with anti-decubitus mattresses upon request if you provide medical history—assuming, of course, they have any in stock. Caritas does something similar. Same goes for the commode. You can get diapers and bed pads on credit, and wheelchairs too. My mom used diapers, but we used a commode for her until her very last day; we'd wheel her over to the bathroom and position the commode right over the toilet so she could go directly into the plumbing. I'd also wheel her right up to the sink to bathe her. It meant the world to her. She was completely immobile, yet she passed away without a single pressure sore.
We managed to get an electric hydraulic bed with an anti-decubitus air mattress and compressor on loan thanks to a neighbor who happens to be a director at a nursing home. Usually, they rent them out for about $300 a $133 month if they have them available. Your best bet is to call around the local area and ask.

Dad’s condition has taken a turn for the worse, and his oncologist decided to halt chemotherapy altogether, sending him home to face the end.

However, I managed to find a clinic in Germany affiliated with a major medical university; their neurosurgeons are confident the tumor is completely operable and have scheduled the surgery for January 11th.
Dad is immobile right now, though he can still move his arms and legs. He’s lost the ability to speak—he can only manage "yes" or "no"—and he's coughing quite a bit. On the bright side, he’s eating well.

I realize it might seem insensitive to ask for your advice on what to do next, but I’m feeling lost and truly need some perspective. Should I go through with taking him for this surgery? How am I even supposed to gauge how much of the tumor they’ll actually be able to remove? They mentioned it would be an awake brain surgery.

Grace Ross20 said:Dad's condition took a turn for the worse, and his oncologist decided to halt chemotherapy and sent him home to pass away.

I managed to find a clinic in Germany affiliated with a medical university; their neurosurgeons are claiming the tumor is entirely operable and have scheduled the surgery for January 11th.
Dad is immobile right now, though he can still move his arms and legs; he's lost the ability to speak entirely, only managing "yes" or "no," and he's coughing quite a bit. He is eating well, though.

I realize how difficult it is to ask for advice on such a heavy matter, but I truly need perspective. Should I take him in for this surgery? How am I supposed to gauge how much of the tumor they'll actually be able to remove? They mentioned it would involve awake brain surgery.

You know deep down that, as a family, the decision rests solely on your shoulders... if I could find an option like that for my mother (Stage IV metastatic adenocarcinoma of the lung), I would pursue it in a heartbeat, provided the finances allowed it.

Rachel Williams said:You know perfectly well that you have to make that decision as a family... if I could find something like that for my mom (Stage IV metastatic adenocarcinoma of the lung), I would do it in a heartbeat if I could afford it.

Have you tried reaching out to clinics over in Europe? If all the treatment options here in the States have been exhausted, Medicare should technically cover the costs for medical care abroad.
The problem is, nobody ever bothers to tell us that; they just want to send us home to die.

I realize being a doctor in America isn't easy, even when they genuinely want to help. It’s not like they make the call themselves—it’s the board. My dad's oncologist is a wonderful woman, but her hands are tied; they cut costs everywhere, and no one wants to throw money at expensive treatments for someone who's already been written off.

Thank you for the suggestion. I think I'll end up taking him in for surgery eventually. What do I have to lose?

Grace Ross20 said:Have you tried reaching out to clinics in Europe? If all the treatment options here in the States have been exhausted, Medicare is actually supposed to cover the costs of medical care abroad.
The catch is that nobody ever tells us that; they just want to send us home to die.

I know being a doctor in America isn't easy, and even if they have the best intentions and genuinely want to help, it’s not their call—it’s the board. My Dad's oncologist is a wonderful woman, but her hands are tied. They cut costs constantly, and nobody wants to throw money at expensive treatments for someone they've already written off.

Thanks for the suggestion. I think I'll end up taking him in for the surgery eventually. What do I have to lose?

You need to get three signatures from our specialists on a formal letter stating that the necessary conditions, expertise, or equipment simply don't exist in the US, and specifically recommending this treatment instead. You then take that to the Medicare commission and wait for a decision. Usually, most people pay out of pocket first, and then Medicare reimburses them later if the claim gets approved.
Honestly, I doubt they'll approve it, especially if we're talking about an experimental protocol. From a purely pragmatic standpoint, they don't want to set a precedent because then they'd be swamped with massive claims from other patients. You'll likely hit a wall immediately because, frankly, most doctors won't want the headache of dealing with it. They are Medicare employees first and foremost; they act as gatekeepers of the budget out of fear of repercussions, and only secondarily as physicians. You might have to go to court or take it to the media.
If I were you, I'd go for the surgery. There's nothing to lose.

Grace Ross20 said:Dear boldridge3, this whole thing with the hair... it’s just beautiful. You've actually given me the idea to save some of Dad's hair too; even though it's short right now, I'll wait until it grows out a bit a little longer. 🙂

Life is a relentless cycle of emptiness, grief, joy, and more grief—that's just the nature of our existence. In the end, what else is there to do but live, love, and mourn? I am truly glad to hear things are looking up with your marriage; perhaps you'll finally find some breathing room to focus on the things you actually care about.

We've decided to bring Dad home, so Mom and I will be managing his care somehow, even though he's currently going through this phase of delirium where he sees things in the room that simply aren't there. I'm hoping a higher dose of Decortin will help clear his head.

Who should I reach out to regarding a wheelchair, an anti-decubitus mattress, and all the other gear we're going to need?
And I'm torn on the hygiene situation—should I stick to diapers like they do in the hospital, or would a commode be a better option?
He can't move on his own yet, but with our help, he might be able to. I just want him to feel a sense of dignity and comfort if possible.

I’ve always been someone who clings to memories; I try to preserve a piece of everything, much like my mother used to do. I'll never forget the look on my sisters' faces when I was gathering her hair from the floor while we were cutting it—they thought I was losing my mind, yet the very next day after the funeral, they were asking me for a single strand of her hair just to have something to hold onto. These days, my greatest comfort is playing recordings of our old conversations; they're often hilarious, and I just sit there listening to her voice. There is nothing quite like brewing coffee in her old pot in the morning (which was the first thing I grabbed from the house when she passed &#128515😉), putting on her robe, and just sitting there with my cup. Maybe because the memories are so vivid, the grief feels less heavy, because she is always present in something around me. I wish your Dad immense strength and a fierce will to live; everything else follows once that spark is there. Cherish every moment with him, even the difficult ones, and please, always have patience for him. There were times I felt like screaming at Mom when she’d insist I do something, especially when I was cooking her lunch because she couldn't manage it herself; she had this way of commanding me that could literally drive me to tears, though she never saw me cry over those petty things—only on the day she came home from the Mayo Clinic and told me she didn't have much time left. Don't ever let him see you cry, even when it feels impossible; just smile and stay upbeat, no matter how hard it gets. If you sink into sadness, he'll sink right along with you. I sincerely hope everything turns out okay with him and that you find the right path for his treatment. Wishing you all the best. 😃

I wanted to reach out and say hello to everyone here. I never quite found the right words to post while my sister was fighting her battle with peritoneal mesothelioma. Unfortunately, our story didn't have a happy ending. I’m still in shock because everything moved with such terrifying speed; she went from her first symptom to passing away at just 42 years old in the span of only two months. To be honest, I hadn't even heard of mesothelioma before this happened, and I can't help but feel angry that she wasn't given a real fighting chance. Is this disease truly that aggressive—so relentless that you don't even have time to process what's happening? I truly hope someone else here has some more positive stories to share.

Laura Sanchez23 said:I just wanted to say hello to everyone. I never managed to post anything here while my sister was fighting abdominal mesothelioma. Our story didn't have a happy ending... I'm still in total shock because everything moved so incredibly fast. She was gone in just two months—from the very first symptom to the day she left us, all at just 42 years old. I have to admit, I’d never even heard of mesothelioma before this, and I'm honestly furious because it feels like she never even stood a chance. Is this disease really that aggressive? Is it so vicious that you don't even have time to process what's happening? I really hope someone else here has some better news to share.

Unfortunately, yes. It is an incredibly aggressive, progressive, and rare malignancy, which means the therapeutic options are extremely limited.
Most cases stem from asbestos exposure, though a combination of genetic factors can also trigger the mutations that lead to the disease. For instance, people who worked at plants like ExxonMobil or lived near industrial sites with high exposure levels face the highest risks, as does anyone spending prolonged time in older buildings with outdated asbestos insulation. In the US, those types of environments are often where we see the most frequent cases of mesothelioma.

I am so deeply sorry. Please accept my sincerest condolences. 😢

Angela Wright said:Unfortunately, yes. It’s incredibly aggressive and progressive—a rare malignant diagnosis with very limited treatment options.
Most cases involve exposure to asbestos particles, though a variety of genetic factors can trigger the mutations that lead to the disease. For instance, workers at industrial plants like US Steel or residents living near old manufacturing sites were most exposed, as were those spending long periods in buildings with outdated asbestos insulation. In the US, these are the primary groups affected by mesothelioma.

I am so deeply sorry. Please accept my condolences. 😢

Thank you.
I’ve already read up on all of this; everyone keeps asking when she might have been exposed. Given her background as a mathematical engineer, she never worked anywhere near an industrial site like that. I realize other factors can play a role, but it’s just such a massive shock. It feels cruel when life doesn't give you even a fighting chance... nothing. The worst part is the lack of symptoms; by the time they actually show up, it’s usually too late. You don't even get time to process it before she's gone.

Laura Sanchez23 said:thanks
I’ve been reading up on all of this myself, and everyone was wondering when she was actually exposed. With my background in mathematical engineering, I know for a fact she wasn't anywhere near asbestos. I realize other environmental factors can trigger illness, but this is just a massive shock. It's like life doesn't even give you a fighting chance... nothing. The worst part is there aren't even symptoms; by the time they show up, it's already too late. You don't even get a chance to process it before she's gone.

The thing about exposure is that you never truly know. We have a neighbor whose apartment sits against an exterior wall, and during renovations, he found an asbestos tile used for insulation. He had absolutely no clue it had been sitting right under the plaster in his dining room for years. The building was put up in the early 70s. For all we know, someone could have been slowly breathing in particles through the ventilation at work for decades.
That said, I suspect those pleural issues are a more common manifestation of asbestos exposure than the ones starting in the abdominal cavity. In her case, it was just a sudden, devastating blow 🙁. May she rest in peace, and I hope you all find some sense of peace in your hearts so you can move forward.

Laura Sanchez23, I am truly, deeply sorry 😢. Please accept my most sincere condolences.

Hello everyone,
I first reached out about twenty days ago when we discovered my husband has a testicular tumor with possible brain metastases.
Since that realization, things have moved at lightning speed.
We contacted neurosurgeon Melada, and my husband ended up being admitted to the Mayo Clinic. They identified three distinct tumors: melanoma, a testicular tumor, and a brain tumor. We handled all the surgeries at the Mayo Clinic, where the PhDs determined that all three are primary tumors.
He went from a healthy 48-year-old to a man fighting three tumors in just one month.
At home, we are in shock, terrified, and grieving. But despite everything, we are staying highly organized, and so far, everything is proceeding as planned given the circumstances.

What I wanted to share is this:
- These support forums are truly the best source of information when you find yourself in a situation like ours.
- I spent 48 hours straight reading page after page, jotting down questions and answers, which helped me navigate this nightmare much more effectively.

Thank you all for being here, and to Angela Wright, a sincere thank you from California.

Regards,
Minnie

Donna Brooks20 said:Hi everyone,
I first reached out about twenty days ago when we found out my husband has testicular cancer with possible brain metastases.
Since that discovery, everything has moved at lightning speed.
We got in touch with neurosurgeon Melada, and my husband ended up being admitted to the Mayo Clinic. They identified three tumors: melanoma, testicular cancer, and a brain tumor. We handled all the surgeries at the Mayo Clinic, and according to the PhDs, all three tumors are primary.
We went from having a healthy 48-year-old man to someone fighting three different cancers in just one month.
At home, we’re in shock—terrified and heartbroken. But despite everything, we’ve stayed incredibly organized, and so far, things are moving according to plan as much as they can in a situation like this.

What I really wanted to say is this:
- These support forums are hands-down the best resource you can find when you're thrown into a crisis like this.
- I spent 48 hours straight reading page after page, jotting down questions and answers, which helped me wrap my head around this nightmare.

Thank you all for being here, and a huge thank you to Angela Wright from California.

Best,
Minnie

I have to admit, I haven't come across a case involving three simultaneous primary tumors before. My gut tells me there has to be some common environmental trigger involved.
Please, keep us posted on how things develop.
What specifically are the diagnoses for the tumors? I'm particularly interested in the one on the brain.
Hang in there; we're here for whatever questions or support you need.

Sorry I didn't search the forums first or have the patience to dig through everything... I really need some help here. My Dad has been stuck in this local hospital for seven days now with a liver tumor diagnosis and what looks like metastases in his spine. His condition has just tanked since he was admitted. They won't let him move around, he isn't eating, and he’s just incredibly depressed because nobody seems to have any patience for a 76-year-old man who’s a bit slower after surviving two mild strokes...

What I’m trying to figure out is, at what point does an oncologist actually enter the picture? When does the actual tumor treatment start?

The doctors at this current facility don't have one on staff, so I want to get him transferred somewhere in Washington, D.C. (any suggestions where?)
It's impossible to catch a doctor or even get a straight answer about anything...

Angela Wright said:I have to admit, I haven't come across a case involving three simultaneous primary tumors yet. I suspect there must be some common trigger, perhaps exposure to something in the environment.
Please keep us posted on how things develop.
What specifically are the tumors in the middle? I am particularly interested in the one in the brain.
Hang in there. We are here for questions and support.

Believe me, I didn't dive deep into the PhDs' research because, frankly, I was terrified. I don't know if that’s understandable, but that’s how it felt. Doctors don't offer any real prognoses.
The only specific detail I remember regarding the brain: a high-grade anaplastic glial tumor.

As for what he was exposed to, it was years of intense workplace stress and harassment. After about ten years, he finally hit his breaking point and switched companies. He completely reinvented himself there—he works hard, and they actually value and respect him. And now, this. Just my luck.

Donna Brooks20 said:Believe me, I haven't spent my time deep-diving into the PhDs' research because, honestly, I was too terrified. I don't know if that makes sense, but that's just how it is. Doctors won't give you any kind of prognosis.
The only specific detail I can recall regarding the brain is that it was a high-grade anaplastic glial tumor.

What he actually went through was years of intense workplace stress and constant bullying. After about ten years of that, he finally snapped, switched companies, and completely turned his life around—now he’s at a place where he works hard and is actually respected and valued. And now, out of nowhere, this happens.

Yeah, I get it.
But you need to face the whole situation head-on as soon as possible. Once the diagnosis gets a first and last name, you'll be able to react properly and make informed choices when it comes time to make big decisions.

placidcobra7 said:Forgive me for not scrolling through everything first; I didn't have the patience to hunt through the forum archives. I really need some help here. My Dad has been stuck in a local hospital for seven days now with a liver tumor diagnosis and what looks like metastases in his spine. His condition has taken a massive dive since he was admitted—they won't let him move, he isn't eating, and he's incredibly depressed because nobody seems to have any patience for a 76-year-old man who’s a bit slower after suffering two mild strokes.

What I really want to know is: at what point does an oncologist actually enter the picture? When does the actual cancer treatment start?

The facility he's at doesn't even have an oncologist on staff, so I want to get him transferred somewhere in Washington, D.C. (where specifically?)
It's impossible to catch a doctor or get any decent information...

You need to push your way in to see a doctor right when they're busy and demand thorough, clear information. Don't take "we don't know" for an answer.
An oncologist usually gets involved once the patient's general condition is stable enough to actually handle the rigors of oncology treatment.
Go to the Mayo Clinic.

Angela Wright said:Try to get to the doctor right when they’re feeling worn out and demand thorough information.
An oncologist usually steps in once the patient is stable enough to actually handle starting treatment.
Head over to the Mayo Clinic.

I'm traveling tomorrow to talk to the doctor. Mom found out today that it's likely a primary liver tumor, and they're basically just playing it by ear now because things have progressed. They were planning a colonoscopy and an endoscopy, but he's too weak for those right now. He's already got heart issues, and now they're trying to stabilize him with transfusions because he's probably bleeding from the tumor. At least, that's my guess... honestly, with his age, it feels like they've practically written him off. I don't know why they stopped mentioning the MRI. There isn't any pain, but he went from being completely independent to needing diapers within two days of being in the hospital, which is a lot for him to swallow. Visiting is banned because of the flu, and I'm worried his mental state might actually break him physically before the tumor does.
I've been frantically Googling, and it seems like drugs can sometimes shrink a tumor down to a size where surgery becomes an option. From what I read, everyone raves about the team at Mercury. So, who do we go to? Mayo Clinic?
Who even handles the referrals for further hospital care—is it the people he's with now or his primary care doctor? So many questions, and today they basically brushed Mom off when she tried to get consultations. She was exhausted, so they finally showed some pity, but even then, it wasn't the actual doctor overseeing Dad's care.