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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 277 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
crimsongull20 crimsongull20 Active Member
84 messages
joined May 2004
#2321 ·
Lisa White54 said:I've always tried to look at it this way: how would I feel if I were the one sick? How would I want to be treated? So, that’s basically how I treat my husband.

If you aren't sick, you can't truly grasp what it feels like or what you'd actually need... You can try to help, sure, within reason, but never assume you actually understand.
Ethan Reyes2 Ethan Reyes2 Newcomer
4 messages
joined Apr 2008
#2322 ·
Such a heavy, necessary topic...
To be honest, when everything first started falling apart with my mom, I was naive enough to think the chemotherapy rounds would be the hardest part to get through. How wrong I was...

The emotional rollercoaster Mom is riding right now—all kept steady by a constant stream of morphine—it’s enough to drive anyone to the brink. Yesterday, I found myself sobbing like a child, just completely undone.
A friend's mother actually warned me about a month and a half ago that there would come a stage where the disease itself starts speaking through her, letting out all those "demons." It is such an absolute nightmare. 🙂
My mantra has become a constant loop in my head: 'it's just the illness, it's just the illness,' but how do you say that when certain words cut so deep that your vision actually blurs from the sheer weight of the grief, the despair, and the anger?
It truly is an art form, isn't it? Trying to care for a terminally ill family member while simultaneously attempting to keep the rest of life moving forward as if things were normal.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2323 ·
Kimberly Wright said:What a heavy topic...
Honestly, when everything first started going downhill with my mom, I was naive enough to think that getting through chemo would be the hardest part. Man, was I wrong...

The emotional roller coaster Mom is riding—smoothly greased by morphine—is enough to drive anyone straight to the edge. Yesterday, I found myself sobbing like a child.
A friend’s mother actually warned me about a month and a half ago that there would come a stage where Mom starts speaking the "demons" of the disease. It is absolutely terrifying.🙂
My mantra is constantly, "It's just the sickness, it's just the sickness," but when certain words cut so deep that your vision blurs from pure grief, despair, and rage, that mantra fails you.
It is an incredible feat of balancing act, trying to care for a terminally ill family member while simultaneously attempting to keep the rest of life functioning normally.

That isn't "art." It's pure sacrifice fueled by love. I didn't have a life of my own for the entire duration of her illness. My existence was effectively put on hold for three years. My only redirection of focus was spending fifteen minutes a day walking my dog and leaning on my partner, who moved in with me just to keep me upright.
And as for those "demons" of the disease? I could write a whole book on them—covering both her outbursts and my own fits of hysteria and fury. She was sick, sure, but I was right there in the trenches with her, losing it too.
Still, thank God for the silver linings—those moments of clarity and personal growth—because without them, this whole experience would just be a total coma.
Ethan Reyes2 Ethan Reyes2 Newcomer
4 messages
joined Apr 2008
#2324 ·
Angela Wright said:I didn't really have a life at all during her entire illness. It felt like I was just on hold for three years.

😢

Thank God for those silver linings, though—those moments of clarity and growing up—because without them, this whole experience would have just been a total coma.

Personally, I can't think of a single positive thing about any of this, 🤷
as I've mostly just run into a mountain of nonsense and terrible experiences throughout the whole process.

1. You can't actually take medical leave to care for a sick parent,
2. If you're driving someone home from chemo or radiation, you're stuck waiting at the clinic for at least two hours,
3. Information regarding the disease, the treatment, or basic patient rights is something you usually find out from friends, neighbors, or some random website, and then maybe from doctors or staff if you happen to know exactly which questions to ask,
4. The level of attention a patient receives seems to be directly proportional to how deep their pockets are or how many little gifts they hand out to staff,
5. Even though my mom paid her dues into Medicare and supplemental insurance religiously for years, she still hasn't received adequate palliative care. She spent ten days in the hospital, and despite being on antibiotics, they basically kicked her out the door. The only other option was that hospital in Novi Marof, which I honestly won't even go there.
6. And don't even get me started on nursing homes 🙄... Mom lasted exactly one week in one that claims to offer "high-quality service." It was so high-quality that they didn't bother giving her water until two in the afternoon one day (and keep in mind, she’s immobile). They missed her medication doses, nobody checked to see if she had even eaten anything that day, and they didn't bother changing or washing her once during that entire week.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2325 ·
Kimberly Wright said:😢

I can't find a single redeeming quality in any of this. 🤷
I've run headfirst into a mountain of contradictions and systemic failures throughout this entire ordeal.

1. You can't just take "caregiver leave" to look after a sick parent.
2. When someone is being driven back from chemotherapy or radiation, they’re expected to sit around waiting at the clinic for at least two hours.
3. Information regarding diagnoses, treatment plans, or patient rights isn't handed to you; you have to scavenge for it from friends, neighbors, or the internet—and even then, you only hear anything from doctors if you already know exactly which technical questions to grill them with.
4. Patient care seems to scale directly with the depth of your pockets or how much you tip the staff with gifts.
5. Despite my mother paying her dues into Medicare and supplemental insurance for decades, she still hasn't received adequate palliative care. She spent ten days in the hospital, and even while she was still on antibiotics, they basically kicked her out the door. Her only other option was a facility in Novi Marof, which I won't even dignify with a comment.
6. As for nursing homes... 🙄 my mom barely lasted a week in one that supposedly boasts "high-quality service." It was so high-quality that they didn't bother giving her water until 2 PM one day—and mind you, she's immobile. They missed doses of her medication, nobody checked if she had even eaten a morsel all day, and they didn't bother to change or wash her once during that entire week.

To address every single one of those points from 1 to 6, I decided to actually do something rather than just watch. I learned how to deal with a whole lot of bullshit, how to swallow my pride for a greater cause, how to slam my fist on the table, and how to show some teeth. I learned how to take the chaos that hit my family and give it purpose by working alongside others. I learned how to take life as it comes, day by day, and then figure out how to tackle it.
Honestly, looking back, without everything I went through with my mother, what I'm facing now with my baby would be so much harder—maybe even impossible for the person I was before Mom got sick.
I realized I refuse to be part of the passive masses anymore, just letting life happen to me—letting the things I can't control pass, while doing absolutely nothing about the things I clearly *can* influence through sheer engagement.
ironsailor22 ironsailor22 Member
34 messages
joined Dec 2010
#2326 ·
Kimberly Wright said:😢

I can't find a single redeeming quality in any of this. 🤷
I've run into a mountain of inconsistencies and sheer incompetence throughout this entire ordeal.

1. You can't even get "caregiver leave" to look after a sick parent.
2. At the medical center, if you're picking someone up from chemo or radiation, you’re looking at a minimum two-hour wait.
3. Information regarding diagnoses, treatment plans, or patient rights? You usually pick that up from friends, neighbors, or the internet—unless you happen to know exactly which technical questions to hammer into the doctors or staff.
4. Patient attention seems strictly proportional to the depth of your pockets and how many "gifts" you use to grease the wheels.
5. Despite my mother paying her dues into Medicare and supplemental insurance for years, she isn't receiving adequate palliative care. She was hospitalized for ten days, and even though she was still on antibiotics, they just sent her home. The only other option was a hospital in a small town in Ohio—which I won't even dignify with a comment.
6. As for nursing homes... 🙄 my mother lasted exactly one week in a place that boasts "high-quality service." It was so high-quality that they didn't bother giving her water to drink until 2 PM one day—and keep in mind, she is immobile. They forgot her medication, nobody checked if she had actually eaten anything all day, and they didn't bother changing or washing her once during that entire week.

It is a disgrace that palliative care has been virtually erased from our healthcare system, leaving terminal patients to be entirely dependent on their families. Managing pain, administering IVs, providing necessary equipment like medical beds, transport carts, or anti-decubitus mattresses—these are things home care simply cannot handle.
The home health service is an absolute farce. We had a visiting nurse who was essentially a contractor for a private clinic in the suburbs. All she did was wipe my mother's face and hands with a wet cloth. When I insisted on an IV because Mom hadn't eaten or drunk anything for days, she just waved me off dismissively. And when my poor mother was hiccuping incessantly day and night due to electrolyte imbalances, the nurse just forced a couple of ounces of fluid into her mouth via syringe and called it a day. In short: zero meaningful help from such a disorganized home care setup.
In America, there isn't a single private institution that provides quality care for patients in this condition. Even though prices for nursing homes range from five or six thousand dollars up to ten thousand at the first private hospice in a suburb outside of New Jersey, unfortunately, there is no oversight regarding the quality of service or staff expertise. They can do whatever they want. In fact, by stripping us of the right to a dignified death, the state has essentially allowed these facilities to enrich themselves—which, frankly, is the only thing about this whole situation that seems to be working efficiently.
placideagle8 placideagle8 Newcomer
2 messages
joined May 2011
#2327 ·
Ugh... I’ve been through the absolute ringer with all of it... the surgeries, the grueling rounds of chemo, watching my hair fall out... and I was facing all of that at just 17 years old. But let me tell you one thing: this disease doesn't care how old you are. YOU JUST HAVE TO HAVE PATIENCE AND MAINTAIN A POSITIVE MINDSET!!! 👍
crimsondrifter2 crimsondrifter2 Newcomer
4 messages
joined May 2011
#2328 ·
Back in May '95, when I was 15, I lost my dad to stomach cancer. Then, the other night at 11:15 PM, I lost my mom to aggressive bronchial adenocarcinoma.
It’s heavy. Just feeling sad and angry all at once...
Ever since I found out about her diagnosis a month and a half ago, I haven't left her side. I made sure she had everything—love, food, juices, you name it. I scoured every forum, article, and book I could get my hands on. You guys really helped me out with your own stories, so thanks for that.
I have to say, I'm pretty disappointed with how the doctors handled things at the Small town, USA clinic. Even though we knew from the start this diagnosis was a disaster. We're talking bronchial adenocarcinoma that spread to the lungs, heart, and bones, plus all the complications with fluid buildup in the lungs, heart, and abdomen. Despite all that, they just pushed chemo on her without any real explanation. Of course, I did my homework and asked the basic stuff. Like, what's the prognosis, and does it even make sense to put her through chemo right now?
The answers I got were basically for a 10-year-old. "We don't know," "we have no idea how she'll react," etc. I fought against it, but Mom trusted the doctors... obviously.
I supported her, though. I explained the whole situation to her, and she made her choice.
On the alternative side, I tried everything possible—shiitake mushrooms, vegan cheese, flaxseed oil, Breuss teas, veggie juices, beta-glucan, Q10, Omega-3, all that. She actually got stronger for a bit, but once they pumped her full of those toxins, she didn't stand a chance. She passed away three weeks later.
Just really think long and hard about treatment options if anyone you love deals with this damn disease.
Stay close to your people. Give them unconditional security and love, no matter what your relationship was like before. That's what matters most.
P.S. Kudos to the doctors and nurses at the Holy Spirit hospital; they were honest and attentive.
Avoid that Small town, USA clinic. They're just underpaid robots with no hearts. Not gonna get into the specifics of what happened there because, honestly, it doesn't even matter anymore...
casualraven43 casualraven43 Member
13 messages
joined May 2009
#2329 ·
John, please accept my deepest condolences.🙂🙂
It is truly difficult to process everything you have been through. I completely understand why you feel that way about those experiences where they just tell you to "call the doctors"—it sounds absolutely horrific and deeply unsettling.
Thank you for continuing to offer your advice and support to all of us who are still fighting our own battles, even while navigating your own pain and grief. I truly mean that; you have my utmost respect.
Stay strong. Sending my very best wishes to you.
Ethan Reyes2 Ethan Reyes2 Newcomer
4 messages
joined Apr 2008
#2330 ·
@ crimsondrifter2 😢
my deepest condolences
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2331 ·
John, I am so incredibly sorry you're going through this right now. 😢
At the end of the day, you can find some peace knowing you let your mom make her own choices from the start; you did everything a son could possibly do.

I wish you had reached out sooner, because I really would have steered you toward the Sailboat Association and their head nurse, Sandra, over in that Small town, USA—she’s an absolute saint and runs the whole association. I'm certain she could have offered you some much-needed support.
Your mother's illness was brutal and unpredictable, and honestly, the way those doctors explained things to you—like they were talking to a ten-year-old—is basically the ceiling of medical knowledge when fighting a disease like this. It’s just too overwhelming, and there are no guarantees; sometimes the treatments work, and sometimes they don't.
Hang in there and try to focus on yourself for a change.
crimsondrifter2 crimsondrifter2 Newcomer
4 messages
joined May 2011
#2332 ·
casualraven43 said:crimsondrifter2, I am so incredibly sorry...🙂🙂
It’s heartbreaking what you went through. I totally get why you're venting about those "just call the doctors" comments... honestly, just pathetic.
Thank you for helping the rest of us still fighting this fight while you're dealing with all your own pain. Seriously, props to you.
Hang in there... sending love...

I also have to mention how the staff handled things at the Holy Spirit hospital ER. She was waiting for hours in terrible shape. Her heart rate was hitting 150 because of fluid buildup that needed urgent drainage. They just gave her an IV and sent her home like that. Didn't even bother with a cardiac ultrasound.
Watching someone suffer all night like that—she couldn't even lie down, she had to stay propped up against a table just to breathe. That went on for three days until they finally told her "that's just how it goes." It wasn't until the third day they actually did the ultrasound, saw the fluid, and drained it, but it was too late. She passed away a few hours later.
And don't even get me started on waiting forever in the hallway for an X-ray, or how there wasn't even a nurse available, so her own son ended up having to change her diaper in the ER because they'd given her diuretics.
Back in our Small town, USA, we waited five hours in a stuffy hallway! A nurse there wouldn't even help her out of the tub because she was busy handing over her shift... or wouldn't even open a water bottle because my mom was too weak.
The way some people act just leaves me speechless. This woman spent her entire life helping sick kids and anyone she knew; she didn't deserve to be treated like that.
I really believe the whole ordeal sped up her passing. All that suffering from the wait times and the poor treatment when she should have been their top priority...
I'm just disappointed and angry. I can only hope I gave her at least a little bit of the warmth she wasn't getting where she needed it most.
Hospital care is such a gamble, and the odds of landing a decent doctor or nurse are slim to none.
I feel like I should have spoken up more, pushed harder. But you don't want to be rude to the people holding your mother's life in their hands.
Doesn't change anything, though. If you're going through this, don't hold back. If they're slow, poke them. If they disappear, demand to know where they are. If they stall, tell them straight up that you want the truth! If they won't do their job, make noise. Threaten to go to the hospital director or the news if you have to. There are plenty of nurses out there waiting for a job who would actually do the work properly.
All in all, it's a tragic story. Wishing everyone else fighting this nothing but the best and a quick recovery. Good luck.
Ethan Reyes2 Ethan Reyes2 Newcomer
4 messages
joined Apr 2008
#2333 ·
Oh, crimsondrifter2, this is just heartbreaking 🙂
I feel so incredibly bad 😢
And honestly, I feel like I see it all coming. That total lack of empathy... it really gets to you. I sometimes wonder where people find their soul, you know? Like, why would anyone even choose a profession like that if they don't have a shred of compassion for the people they're supposed to be helping? 😢

crimsondrifter2 said:I think I should have spoken up more, maybe pushed back a little harder. But you just sit there thinking, "I can't be rude to the people who literally hold my mother's life in their hands."

I find myself spinning my wheels over those exact same thoughts from time to time... though I mostly stayed quiet because I was terrified that if I made a scene, they'd take it out on Mom. How many times did I have to bite my tongue and swallow my rage? At this rate, it'll be a miracle if I don't end up with a stomach ulcer
crimsondrifter2 crimsondrifter2 Newcomer
4 messages
joined May 2011
#2334 ·
Angela Wright said:John, I am so incredibly sorry you’re going through this... 😢
No matter what happens, you can rest easy knowing you let your mom make her own choices first, and you did everything a son possibly could on your end.

I wish you had reached out sooner; I would have told you to contact the Sailboat Association and their head nurse, Sandra, over in that Small town, USA—she runs the association and she’s an absolute saint. I'm sure she would have helped you out a ton.
Your mom's illness was truly brutal and so unpredictable. Honestly, all those things the doctors told you—which sounded like they were talking to a ten-year-old—is basically the extent of medical knowledge when fighting this disease. It’s just too heavy, and nobody really knows anything for sure, other than the fact that certain treatments work for some people and not for others.
Hang in there and try to focus on yourself now.

Thanks for the support... ran into your posts a lot while reading through everything. Your stuff about fighting alongside your mom helped a lot.
I would've reached out way earlier, but I asked Mom first since she wanted to try bioenergy and Reiki, and she just wanted to talk to people going through the same thing. She was super firm about it, though—said she had my brother, me, and her rosary, and that we were her whole world. Told me to trust us to take care of everything.
When my dad passed, I was only 15. I didn't fully grasp he had cancer until the very end... maybe I knew, but I guess I didn't realize he was actually leaving until his last breath. When he went, it hit me so hard... I just lost my will to live for a while. This massive dark cloud just hung over me forever.
Processing everything differently these days. Still sad, still angry, but also grateful I could show up for her, be there, and help. Found a lot of advice from people like you, so thanks a million.
Wishing you and the little one nothing but the best. Everything's gonna be okay.
Gary Brown27 Gary Brown27 Newcomer
1 message
joined May 2011
#2335 ·
A buddy of mine was dealing with malignant melanoma—didn't even realize it was happening. Luckily, the doctors stepped in early and performed Mohs skin cancer surgery to clear out the tumor. I guess I hadn't really heard of Mohs skin cancer surgery until that happened. It seems like a pretty high-tech way to handle things, and the survival rates are actually quite high.

Take care of yourselves and stay sun safe.
redridge13 redridge13 Active Member
94 messages
joined Oct 2021
#2336 ·
Hey everyone, I’m looking for some solid recommendations for medical transport services that cover the whole country. I really need someone who won't absolutely rob me blind when it comes to the $10 per mile rate.

Thanks a ton!
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#2337 ·
crimsondrifter2 - so sorry for your loss 😢

Quick question for anyone who might know: my father-in-law was just diagnosed with stomach cancer. He hasn't had surgery yet, so they're looking at chemo first. However, he suffered a minor stroke four days ago that's left his left leg a bit weak. Since he's 69, we're wondering—is someone in that condition even able to handle chemo?
Thanks!
Jamie Howard3 Jamie Howard3 Member
19 messages
joined Jun 2009
#2338 ·
redridge13 said:I'm looking for recommendations for medical transport services that cover the entire US, ideally with rates that aren't absolutely $10 outrageous per mile.

Thanks!

http://www.ambulance-services-usa.com/
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2339 ·
Kate Reed63 said:crimsondrifter2 - I am so sorry for your loss. 😢

I need some advice if anyone has experience here. My father-in-law was diagnosed with stomach cancer. He hasn't had surgery yet, so they're looking at chemo, but four days ago he suffered a minor stroke that left him with some weakness in his left leg. Given he’s 69, we're wondering if someone in that condition can actually handle chemotherapy.
Thanks!

It all comes down to his overall health. Honestly, I'm worried he might not be able to handle it.
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#2340 ·
Should I be worried? 🤔

My MRI results came back okay. I’ve already seen both the neurosurgeon and the neurologist, and today I met with an oncologist who confirmed there aren't any signs of tumor recurrence, but...

The spectroscopy showed elevated choline levels relative to NAA. I am requesting a follow-up brain MRI with spectroscopy. If the spectroscopic findings prove positive, I would recommend chemotherapy following the VCR/CCNU protocol.

😕

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