Support resources for families dealing with cancer and other serious illnesses

Lily

Is Dad doing any better? I was wondering if they ended up putting that feeding tube in him. Maybe he’ll start feeling a bit more like himself once they finally let him come home.

mistyjackal842 said:Lily

Is your dad doing any better? Did they end up putting in that feeding tube? Maybe he'll feel a bit more himself once they let him come home.

They put it in today, so starting tomorrow, they’ll slowly start feeding him through it. He’s got to stay at the Mayo Clinic for a few more days just so they can see how he handles the tube.

The main thing is that things are looking up. I wonder if she's open to talking?

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Hello everyone... it’s been a while since I’ve checked in here. We’re just pushing through one day at a time and holding onto hope. My mom finished her sixth round of chemo over a month ago, but she’s struggling with this intense numbness in her legs—it goes almost all the way up to her knees. She can still walk, don't get me wrong, but she says the sensation is incredibly uncomfortable... it first cropped up after her fourth session and cleared up within a few days, then it returned during the fifth, and again during the sixth, but this time it hasn't let up. Has anyone else dealt with something similar, or does anyone have any solid advice? Thanks.

My dad is just getting worse by the day. He’s barely eating anything at all. My mom was feeding him through a tube up to nine times a day until about two weeks ago, but now he can barely manage four. On top of that, he’s vomiting and coughing up blood. He went to the Mayo Clinic back on October 30th for his radiation marking, but we haven't heard a single word from them since. I honestly get the feeling they've just written him off. I don't know how much longer he can hang on like this, but I'm scared it won't be long. :'(
He was diagnosed with esophageal and bronchial cancer at the end of August, and he hasn't even started any actual treatment yet. It feels like they're just passing him around from one department to another without actually doing anything. 😠

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mistyjackal842 said:The main thing is that he's doing better. Is he able to talk?

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He can communicate, I guess, but he hasn't really had a voice for a few months now because of the metastases in his lymph nodes.
The day they placed the feeding tube, just a few hours after the procedure, he had these horrific pains in his back. You could tell it was unbearable. It hasn't happened again since.
Does anyone know if that’s linked to the tube being inserted, or what? It came on so suddenly; he was fine right after the procedure and then the back pain just started—a little at first, and then all of a sudden, it was intense. Just awful.

steeleagle152 said:My dad is getting worse. He’s barely eating anything. My mom was feeding him through a tube up to nine times a day until two weeks ago, and now he can barely manage four. He’s vomiting and coughing up blood. He was at the Mayo Clinic back on October 30th for radiation scheduling, but they still haven't called us back. I get the feeling they've just written him off. I don't know how much longer he can hold out like this, but I'm scared it won't be long. :'(
He was diagnosed with esophageal and bronchial cancer at the end of August, and he hasn't even started treatment yet. They're just passing him around from one department to another without any real help. 😠

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I can't believe he hasn't started treatment yet. Like, why???
Maybe you should look into moving him to Springfield? They usually get the first round of therapy going within a week there. Once they admit a patient and run the tests, they move straight to treatment. Sure, waiting for radiation happens, but not for this long—maybe two or three weeks tops.
Waiting this long is honestly way too much.

Nancy Lee said:I can't believe he hasn't started any treatment yet. Why on earth not???
Why don't you just transfer him over to Springfield? They get people started on their first round of therapy within a week. Once they admit a patient and run the tests, the treatment follows immediately. Sure, you might wait for radiation, but we're talking two or three weeks max.
The wait time you guys are dealing with is absolutely ridiculous.

Given how much his condition has deteriorated, I’m honestly afraid he isn't even a candidate for oncology treatment right now. 😢 We need to get his strength up as much as humanly possible just so he can at least handle the radiation. Chemotherapy would probably kill him at this stage.

Nancy Lee said:I can't believe he didn't get any treatment. Like, why???
Maybe you should try switching over to Springfield? They usually start the first round of therapy within a week there. Once they take a patient in and run the tests, the treatment follows. I mean, sure, you might wait for radiation, but it shouldn't be longer than two or three weeks.
this waiting period is honestly just way too much.

We went to the new hospital first. They put an abdominal probe in him and then just sent him home with a referral to the Mayo Clinic. Then at the Mayo Clinic, his doctor referred him to Springfield. There, they did a bronchoscopy and a gastroscopy and basically told him they couldn't perform the specific procedure the doctor from the Mayo Clinic requested (something about installing bypasses on the vocal cords and somewhere else, though I don't quite remember). So, back to the Mayo Clinic again. He just got some pain patches and was told to wait until October 30th for marking. And now we're just waiting again. Everything is getting worse for him. :'(
It feels like they’ve just written him off and are waiting for him to pass away. It sounds harsh, but honestly, that's how it feels. Seeing him suffer like this is just terrible. Truly awful...😢

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steeleagle152

I'm just... I'm so sorry you have to deal with everything going on with your dad. And what you said about the Mayo Clinic? It's honestly the truth. That’s exactly how they wrote off my mom right away, even though she didn't even have cancer. If radiation could have helped him, and that's what they told you... I don't know why he isn't getting it. Maybe it's because of that strike still going on. I've been to several other hospitals in Washington, D.C., but I've truly never experienced such arrogance, or rudeness, or just plain shouting from doctors and staff like we did at the Mayo Clinic during that strike late last September and early October this year when my mom was staying there. I mean, I didn't even realize something like that was possible. Both of my parents are actually doctors—one of them even worked at the Mayo Clinic for a little while—and yet, even the head of vascular surgery was yelling at him, asking what we expected from him. We were just expecting him to help my dear mother with some basic humanity, which is his duty and obligation as a doctor, even if he was also heavily involved in the strike, which really showed in his inhuman behavior.

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Sorry I haven't been following this thread closely—I just pop in here every now and then. I’d love to offer some comfort or support, but that’s just not really my vibe. I tend to be a bit of a pessimist, plus I lost my dad to cancer... so I never quite know what the right thing to say is.
So, the kid with leukemia finally made it home, which was obviously such a relief for everyone. We didn't go see him, though; you have to be careful, and we didn't want to cause any trouble or risk his health. (They didn't invite us over, but I totally get it—we aren't super close anyway, but clearly, we care.)
He’s in remission now, so he’s heading back for his third round of chemo torture in a few days. Word is there are two more rounds left, and then it's time for a transplant.
Sending so much luck and strength to everyone else out there dealing with these worries and fears...

Taylor Jackson14 said:My dad passed away. Thank you to everyone who shared their stories here. So many of you gave me the hope, strength, and info I desperately needed. Thanks to this community—especially Angela Wright—we managed to make sure his last day was peaceful and finally free from all that crushing pain... Angela once wrote about how letting go is the ultimate act of love; I was scared to believe that at first, but in those final days, I saw exactly what she meant. I’m an adult, but without him, I feel like a lost kid again. If only I had just one more moment...

I'm not sure if we're thinking the exact same thing, because I don't read everything on here, but I think I just read that exact sentiment.
And yeah, I wanted to write about how hard it is to know when it's time to let go and how to make it easier for them. It's just so incredibly tough.
But it's so necessary, and I think it means everything....
When you stop pushing someone who already knows they can't fight anymore, and you stop burdening them with your own (unrealistic) hopes... instead, you just accept it and help them find peace.
I did everything I could to head in that direction. From the very start, I knew he was fading. I knew there was no saving him. But we fought to stretch out the good moments, helping him through it, and now even through the sadness, we can look back with a little bit of joy at those precious times... parts of our lives we dedicated just so our loved one could pass more easily...
I don't want to spread fear or pessimism to anyone else... in our case, the prognosis was three months max, and he lasted almost a year.
But obviously, most cases aren't like that; there's usually hope, and you have to fight... and keep hoping.
That's why I'm still holding onto hope that this 13-year-old boy will beat leukemia.

Look, regarding this 13-year-old kid fighting leukemia—I’m seriously suggesting he joins the Lioness group on Facebook. It’s a massive support community for people dealing with this stuff; they share all kinds of advice on managing treatment, and there’s even a 20-year-old girl in there who already went through a successful transplant and is still navigating her recovery (using the Mayo Clinic protocols). This is just my two cents for him and his family—if they want some real, practical guidance so they know exactly what they're walking into, they should definitely check it out. Of course, it's entirely up to them. I just really, truly want this kid to pull through and beat this thing.

Casey Booth3 said:For this 13-year-old kid fighting leukemia—my suggestion is to join the Lioness group on Facebook. It’s a support group for patients where everyone shares advice about treatment. There’s even a 20-year-old girl there who already had a successful transplant and is still recovering. This is just my advice to him and his family, if they want absolute support and want to know exactly what to expect. I truly hope this young soul pulls through and beats this.

Did a little Googling, but came up empty. What's the exact name? Or maybe a link?

After scrolling through this and several other forums regarding the herbalist Joe from Cynthia, I felt compelled to share my own experience so anyone considering his services understands both sides of the story before they jump in. About eight months ago, my mother was diagnosed with cancer, and naturally, our family immediately began searching for alternative ways to tackle the problem, which eventually led us to Joe. When we first started digging through online forums for feedback, we mostly encountered success stories—but now I realize why that is. Once you lose someone dear to you, you don't exactly have the stomach to go back onto a forum to write about it, let alone vent, so from an outsider's perspective, it looks like everyone had a positive experience and that this herbalist is some kind of miracle worker. But that’s just not the reality. My mother, while using Joe's services which we paid $2333 and despite his grand promises that he could cure this specific type of cancer—all while waving around various hospital documents—passed away a month ago.

I'm writing this because I want anyone venturing into the world of alternative medicine to know exactly what they're dealing with; in 99% of cases, you're looking at people who prey on desperation and do nothing but cause harm. This isn't even an isolated incident, as there are plenty of people in San Francisco who were "treated" by Joe and ended up dead. Of course, he isn't the only one out there, but I'd encourage anyone who has dealt with other herbalists to speak up here so people stop pinning false hopes and throwing money at the empty promises of self-proclaimed doctors.

Rachel Jones8 said:I did a quick Google search, but honestly, I couldn't find anything about it. What’s the exact name? Or better yet, can you just drop a link?

The group is pretty private—you actually have to join first. Anyway, I just sent you a DM!

My dear dad passed away today. He’s gone to a better place, I guess. I just hope there’s no more pain where he is, and that he finally found some peace and quiet.
Dad, I love you.

I'm so sorry to hear that, Lily. Hang in there. 🙂

Lily

I am just so incredibly sorry to hear about the loss of your dear father.

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My heart really goes out to you, Lily.