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

To our dear friend here in this community. Please accept my deepest condolences. Mom has finally found peace... I truly believe she’s in a better place now, far away from all the pain.

Amanda Wells75 said:Hi everyone, I just wanted to let you all know that my Mom passed away a little while ago, around 12:30 AM.
She had really hoped we could bring a priest by to see her one last time, so he was here with her today. She’s finally at peace now.

Please accept my deepest condolences 😢.
Your mother is in a much better, more beautiful place now, free from all her pain.

My deepest condolences, Maya...

My dearest Maya.

Maya, please accept my deepest, most sincere condolences. You did everything you possibly could, so please, be proud of yourself and your Mom. Hang in there, dear. I’m wishing you peace of mind and wishing her eternal rest.

Maya, please accept my deepest condolences. I guess at least Mom doesn't have to deal with all that pain anymore.

Svekar had her first chemo session today, and thank God, she handled it quite well. So far, there haven't been any side effects to speak of. She still has three more days of treatment scheduled, so we'll have to see how things progress, but I'm hopeful she continues to hold up this well.

Hey there.
First off, my heart really goes out to Amanda Wells75—I am so incredibly sorry about your mom. And to everyone else here, I just wanted to say how much respect I have for the courage and sheer grit you’ve all shared over so many pages. I’ve been lurking here for a while now, reading your stories, but I finally worked up the nerve to join the conversation and share what’s going on with me. Three years ago, when I was just 22, I got diagnosed with breast cancer. Because of the size of the tumor, the medical board recommended neoadjuvant therapy right out of the gate. So, I went through four cycles of chemo on the FAC protocol, then two more, followed by surgery and radiation. After that, they put me on hormone therapy and scheduled check-ups every six months. At the time, I thought the worst was behind me. I kept thinking, *I'm so young, this is it*—wondering how much life I could actually squeeze in after getting hit with cancer at 21 or 22. But then, last summer, I started feeling this nagging pain in my lower spine that radiated up toward my shoulder blade. Things took a turn for the worse by September, so I went in for my regular oncology appointment. My oncologist sent me straight for an emergency CT scan of my abdomen and spine. Turns out, the scan showed bone metastases and some changes in my lungs. Back to the drawing board with the medical board: four cycles of Taxother, Carboplatin, and Zomet, plus radiation on my spine. Today was actually my last cycle, though I’ll be staying on the Zomet every three weeks. Now, we’re just waiting on a new CT and the next meeting with the board.
Anyway, the spinal pain is gone—that cleared up pretty fast after the radiation. Now my hip is acting up, but I’m trying to stay positive and figure it's not a new met, just a result of having to sleep on one side for months because of my back.

To be honest, I am absolutely struggling with this chemo protocol. Compared to this, the old FAC protocol felt like a walk in the park. I’m genuinely scared that if the board suggests continuing this at my next meeting, I might just say no. It’s not even about being optimistic or feeling defeated—it’s not like I’m waving a white flag or anything. It’s just that, at this point, I feel like the treatment is doing more damage than good. I honestly find myself thinking the chemo might kill me before the cancer does. That’s how bad it is. I’m wondering if anyone here has experience with less aggressive treatments, maybe clinical trials? Or, what’s the actual risk of turning down chemo when it's already being treated as palliative?
Thanks.

Sophia Reyes3, I’m thinking back to a girl about your age who had a story almost identical to yours. She actually went to see Dr. Baselga in Barcelona. When it comes to breast cancer, he is basically the gold standard, the absolute top of the field. Unfortunately, she didn't find her way to him early enough 😢 but, just so you know, the treatment plan he laid out for her worked in the sense that it managed to keep things stable for a while.
Anyway, I hope this bit of information helps you out somehow.
Hang in there and don't you dare give up!

Thank you all so much for the kind words and the encouragement. My Mom has finally found some peace. These last few days have been pure hell—the pain was just unbearable, even with everything they were giving her to keep her calm. She passed away at the hospital; we fought so hard to make sure they wouldn't discharge her before the very end.
Mom fought until her very last breath and she never gave up. Just this past Sunday around 8:00, she told me—and they let us stay at the hospital as long as we wanted—that since it was Sunday, I should call her oncologist first thing tomorrow morning to ask why she was feeling so terrible. I told her I’d be there for her, and she just looked at me and said, "You won't forget, will you?" I told her I wouldn't. Then she says, "Don't forget to pick up that referral on March 23rd; I have to see the oncologist for a check-up, which is a week from tomorrow." She didn't even have diapers; they put a catheter in her Sunday morning, and then she passed away after midnight. She stayed so composed right until the finish line.
I’ve been reading and following these forums, just like I followed the story of the late Vedran Sabad, and I’ll keep following you guys too. Even though my Mom is gone, you all have really gotten under my skin...
My Mom's funeral is tomorrow, so please say a prayer for her soul tonight.
Zachary Howard2, I'm so glad your father-in-law is handling the chemo well, and I truly hope the next round goes just as smoothly.
goldensailor0, how is your sister doing? There hasn't been any news.

Thanks, Ivanna. I tracked down the page for the Baselga Oncology Institute, so I think that's the one.

I guess... I know it's in Barcelona

Sorry to bother everyone—I actually tried posting this as its own thread before, but I didn't really get much traction, so I’m giving it another shot here. There are plenty of support groups out there for people battling breast cancer, colon cancer, and all those other nasty things... but for me? It feels like nobody's looking. Since tons of people have barely even heard of tonsil cancer, finding any kind of real support has been almost impossible. It's been about a year and a half since my surgery and the 35 radiation sessions I had to go through. As for the aftermath—well, I’m dealing with partial facial paralysis, I can’t produce saliva, and speaking and swallowing has become quite a struggle. They actually took some Muscle from my right breast area to help support my neck, so now my arm and shoulder function is pretty weak, too. Right now, I'm just waiting on my next check-up... I've got this dry Cough, and then throughout the day, I'm dealing with a lot of phlegm I have to spit up—sorry, just being honest! Mostly, I'm just scared. Really, really scared. But I don't want to weigh down the kids who have already been through hell, or any of you guys who are fighting your own battles right now. So please, if you have any advice, any help, or even just an opinion... anything at all... please don't ignore me. Thank God for this community.

Listen, Carl Brooks4, if you had any other kind of cancer diagnosis, believe me, you’d feel just as miserable. Everyone is dealing with their own version of hell, so don't let that stop you from reaching out to people facing different diagnoses.
It's true that your CA is a rare head and neck tumor. I know that for those types of diagnoses, Erbitux is an excellent option—it's used for metastatic wild-type colorectal carcinomas and is FDA-approved for that here in the States. However, it's also used "off-label" for head and neck tumors and has shown really impressive results. I'm not entirely certain if it's strictly reserved for metastatic
cases, but my advice is to go ahead and ask around. You should plan for the long haul, keeping in mind that at some point, you might need to seek treatment at a major Center of Excellence specifically dedicated to your diagnosis.
Since the epicenter of your illness is so close to where a laryngeal tumor would be, it's very possible you'll deal with the exact same side effects from treatment. There are support groups for people who have undergone laryngectomies in the US; try searching online for them. I know they stay incredibly active, and I'm confident they can offer some solid advice.
And please, feel free to reach out here if you need any support.
Hang in there and just keep fighting. God helps those who are brave.🙂

Thanks so much for all the support—it really means a lot. I tried calling the local society, but I don't know if I just caught them at a bad time or if the info online is totally outdated, which honestly just made me feel even more frustrated... like every door was being slammed in my face. It’s not that I’ve given up, per se, I think I'm just going through a really rough patch right now, so I reached out to you guys hoping someone else might be dealing with something similar. My surgery was pretty radical—they basically almost detached my head from my neck! They spent seven hours in there just cutting and clearing everything they could, which is why I didn't go the chemo route and went straight to radiation instead. Though, looking back, I really can't tell which one is tougher. I'm 60 years old, and honestly, if it were just up to me, I wouldn't mind leaving this world behind, but I have a son and a daughter who are so incredibly close to me. We all live together—they aren't married, so yeah—so if things go on much longer, I'm thinking about them. I used to love life so much—dressing up, going out, just living—but now I can't even drive. My mouth is crooked, chewing and swallowing is a struggle, and I've just kind of retreated into myself lately... anyway, thanks again for the support.

Dear Carl Brooks4, your kids are grown adults now. Let them be there for you. I was once that daughter who lost her mom to a rare brain tumor when she was only 57. She spent my whole life shielding me, keeping me under a glass bell jar... but you just can't protect a child from life itself. Realizing that she had pushed me right over the edge into an abyss led me straight to the brink of anorexia. I couldn't imagine a life so messy without her; I needed her desperately... and it wasn't until I hit rock bottom that my shell finally cracked, and I actually started living. I realized that life is everything—it’s not just roses, but it’s not just thorns either. You have to face things head-on and learn how to deal with them. After years of failed relationships in my youth, I actually met my husband at my most vulnerable moment. If my mother hadn't gotten sick, I wouldn't have my two beautiful children today.
In that sense, I think it's time to let your children grow up. They have a mother who is ill and needs their full support and strength. It is time for them to face real life and become your pillars. That is the best thing you can do for them, and for yourself—to find peace knowing you've raised people who are ready for whatever life throws at them.
I'm writing this both as a daughter and as a mother, because I've seen both sides of the coin.
Let them help you. Let them show you that you raised two strong, capable human beings, and don't ever forget that nothing can take away the closeness and connection you share.

Sweetie, thank you so much for those kind words—I’ve been following your posts and I truly know how tough this all is. I lost my Dad when I was only 27, and then Mom when I was 37... honestly, even though I had a husband, it felt like I was completely on my own. Regarding my kids—I don't think I explained it very well before—they are totally independent and living their own lives, they've got great jobs and hopefully great partners too! But, thanks to how things work here in the States, we all live together in the same house, which keeps us really close. It’s actually quite lovely having breakfast waiting for you in the morning, and clean laundry, and lunch, and dinner... it gives me that feeling again that I'm actually useful and needed, you know? They are so incredibly tight-knit that I truly believe when the hard times come, they'll face them together. That’s how it was when my own unfortunate story started—they aren't the type to dwell on things no matter what happens, but I think they processed most of it while I was still in the hospital. I know this forum is mainly about family support, so I try not to make it all about me, but—well, my daughter acts all "cool" and pretends everything is fine, yet I catch that look in her eyes the second I start to Cough—and my son? He's such a worrier, he immediately tries to push me toward the doctor! So, that's why I don't usually talk about my struggles or fears, but I figured I'd pop in here for a bit.

This topic isn't just for those currently fighting the battle; it's for everyone...
...regardless of the circumstances, I believe we need to lay everything on the table—speak up about our wishes, our pleas, and what we actually need. Just some food for thought to chew on.
As for that "dark hour" we all face... it’s waiting for us. It's that middle ground you have to endure, and let me tell you, it requires a constant, relentless fight.
You’re going to be okay. I truly believe there is still plenty of high-quality life ahead of you—weddings, grandkids, the whole works. 😉
Have you started any rehab yet, or seen a physical therapist or anything like that?

Svekar just finished his first round of chemo—four days in, and he hasn't experienced any side effects or issues at all. While I'm incredibly relieved, a part of me is actually a bit worried; I can't help but wonder if the dosage is too low to be effective, or if perhaps the beta glucan played a role in masking things (he actually skipped it this week while undergoing the treatment).
I’m on the fence about whether we should continue with the Noni juice... currently, we have him on a regimen of beet-carrot-apple juice, dandelion root tea, and green tea. We stopped giving him the raw propolis because it’s been being quite hard on his stomach.

If I can offer any help based on what I went through—I didn't actually do chemo, I had radiation instead. It basically scorched my throat and mouth, leaving them covered in these painful sores... I think they call it radiomucositis? Anyway, I was on IV drips for about a week before going back in for more radiation, and man, over those three months, I dropped more than 20 pounds and fell down to about 88 lbs. I couldn't really handle much beet juice because everything hurt and stung so badly, but I did take some beta-glucan, some high-quality hemp oil, Megestrol, an energy drink, and even propolis—though that was pretty tough on my stomach. Fast forward a year later, and I’ve gained back about 26 pounds and honestly feel a whole lot better. I just ate whatever felt okay for me, whether it was meat or anything else that didn't sting.
Regardless of all the advice floating around, I just listened to my own body. That said, I definitely recommend Megestrol because it seriously works wonders for your appetite—you just feel hungry all the time.