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

My dear Rachel Williams, I am so sorry..
Unfortunately, everything just boils down to the LOM—which, if you ask me, is like trying to teach someone how to solve complex calculus when they haven't even mastered basic addition and subtraction. It’s truly tragic when specialists seem to lack even the most fundamental principles.
Personally, I never would have gone digging through the details surrounding my husband's passing if a surgeon hadn't brushed me off while I was there to have some moles removed—telling me it "wasn't malignant" and asking "what does a dermatologist know?" Even my own LOM was visibly shaken when she read the reasoning behind that refusal. It honestly feels like they aren't trained to actually heal people, but rather to just follow orders from the top... It's heartbreaking..

Hang in there.

Quote: my Soul

Rachel Williams said:After three and a half years of fighting, we’re finally reaching the end of the road. If it were "just" the lung cancer, I truly believe Mom would have had much more time—that damn thing has barely budged since the beginning. But then, this past summer, they diagnosed a wild breast cancer that has already metastasized everywhere. And all this happened because they only just got around to ordering a PET scan... a scan we had been begging for for nearly a year once those breast markers first started climbing, even though the mammogram showed absolutely nothing. When we finally secured the referral to MD Anderson Cancer Center, the doctors there were actually shocked that no one had sent her there sooner. Starting tomorrow, Mom is officially being admitted to the hospital. We’re just waiting for the end now... If I lived in America, I don't think this would even be an option. But living here, dealing with a high-risk pregnancy while being two states away from her... the most I'll be able to do is visit occasionally or call her cell phone. How I’m going to pull myself together mentally at the end of this... only God knows...

Both my mother and I have come to the exact same conclusion: having a high-quality primary care physician is everything. My mom spent four agonizing years being bounced around from one specialist to another, dealing with nothing but dismissals, until they finally diagnosed her with lung cancer. By then, of course, it had already reached Stage IV. Everyone kept insisting her cough was just acid reflux, or that the scarring on her lungs was left over from tuberculosis—which she’s never even had, but apparently, doctors know better than she does... And when the nodes in her neck started swelling? One doctor would say they were just swollen glands, another would claim it was just fatty deposits. Depending on who was looking at her, the answer changed. But her GP never backed down. She kept pushing for more tests because she wasn't satisfied with what her colleagues were finding; she was certain they were missing something. And she was 100% right. For every brilliant doctor working in our hospitals, there’s a criminal element just waiting to take your money—people who aren't fit to treat a child, let alone an adult. As for the pulmonary clinic over in Blackout... I wouldn't set foot in there if my life depended on it. Not just because of how they "treated" and "diagnosed" my mother, but because their incompetence is just the final straw for us. Based on everything my family and I have been through, we're done. I wouldn't recommend them to anyone, much like I wouldn't suggest Jordan... and honestly, the same goes for the MD Anderson Cancer Center...

I am truly sorry that you and your mother ended up in this position... It’s heartbreaking. My mom and I are facing the exact same reality—terminal stage, lung cancer, just waiting for the end. We’re planning to keep her at home for her final days; even though the thought terrifies me, we want her to be surrounded by the warmth of her own home until the very last moment. I can't even imagine what you're going through with a high-risk pregnancy on top of everything else... hang in there. Because of my mom's situation, I ended up moving halfway across the world, 10,000 miles away from home... I'm still trying to wrap my head around it all...

I agree, you absolutely need a solid, high-quality primary care physician. My mother had such a run of bad luck because her regular doctor went on maternity leave, leaving a rotating door of young, inexperienced residents to cover the shifts. It was a mess. To make matters worse, after she suffered through three repeated bouts of pneumonia, I flew back to the States, picked her up, and took her straight to a private clinic like Mayo Clinic. We specifically sought out an older pulmonologist, Dr. Slavko Miklic, but honestly... he seemed more interested in me than in my mother’s medical history. He kept making comments like, "Ma'am, how do you have such a beautiful daughter?" Disgusting. I really shouldn't have to mention that... In the end, his big diagnosis was that Mom had mid-section syndrome, and his "brilliant" solution was that we had to pat her on the back three times a day to drain the mucus. Seriously?! He didn't even think to order a CT scan to figure out why a long-term smoker like my mother was dealing with recurring pneumonia. Once I started digging online, I realized that recurrent pneumonia in smokers is a massive red flag that demands serious follow-up. The specialists at Johns Hopkins figured out what was actually happening immediately. I have to give credit where it's due—MD Anderson Cancer Center is top-tier, not just for their expertise, but for their actual compassion and humanity toward patients. Especially their pain management clinic and Dr. Tomislav Bosnjak... he is truly a wonderful, kind, and patient man, both as a human being and a physician...

ruggedfox11, what Jane said was just beautiful... I actually broke down in tears reading her response. And if I can add one thing... nobody truly knows what might have happened if your loved one had been given that antibiotic. Maybe it would have bought him a little more time, but who knows if it would have just led to even more suffering down the road. It’s impossible to say...

Since we're already wading through these heavy topics, does anyone have any insight on how to handle it when a terminal patient is spiraling emotionally and mentally? My mom is on benzodiazepines (Xanax), but death absolutely terrifies her. She’s developed this paranoia; we can’t even bring up the subject of dying without her shutting us out completely. We even called in a priest—a dear friend of hers—to try and talk things through, but nothing seems to touch her. I think she just can't bring herself to surrender, so she's stuck in this constant state of agony where her body is failing her, yet she's white-knuckling it through every second. Dad and I are ready to just let her go so she doesn't have to suffer needlessly once there's no hope left for recovery, but she just can't seem to "let go"... Does anyone have any advice? Should we keep trying to talk to her? Heavy sedation isn't an option right now... how do we make this easier for her?

Thank you all, ladies, for the support. I’m just praying to God that this whole ordeal ends as quickly as possible and that my mother can finally find some peace—even though she was so looking forward to seeing her first grandchild (and my due date isn't even until July 15th).

urbanharbor15, I read through your thread over in the psychology section, but I just didn't have the strength to post anything there. I wish you all so much strength during these moments; I’d suggest coming here to vent and unload on the forum if you don't have anyone nearby going through the same thing. I don't really have anything else or any smarter advice to offer...

Dear Rachel Williams, urbanharbor15, I am so incredibly sorry you’re going through this. Unfortunately, most of us here know all too well what this feels like...
My dad was absolutely terrified of death, so we just never even touched the subject. He was just as scared of chemotherapy; every single time he went in, he’d be hit by such intense panic attacks that they’d have to give him a Xanax just to get him to settle down. We didn't tell him it was Xanax because he used to refuse any kind of sedative. Toward the end, they were giving him sleep aids because he wouldn't sleep for days at a time out of pure fear—which, obviously, doesn't exactly help the treatment process... Maintaining a positive mindset is so vital, and my dad just couldn't find it... If there's any silver lining, it's that his agony didn't drag on forever. It was a horrific, soul-crushing ordeal.
Hang in there as best as you possibly can given the circumstances. I held it together until the very end, acting as the rock for my entire family, but once it was over, I broke down both mentally and physically so hard that I'm still recovering even now.
Rachel Williams, your mother is a hero. From the moment my dad first got sick, her story gave me hope that it actually is possible to beat those ugly statistics. I know that probably means nothing to you right now, but back then, it meant everything to me. I am truly, deeply sorry.

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Around this time last year, my family's life just took a turn for the absolute worst... Dad got his tumor marker results back, and they were way too high to leave any room for doubt regarding a terrifying diagnosis... which was confirmed just a few days later.
We were hoping for at least a year... but Dad passed away only three months after that. He didn't even get that full year we were clinging to.
I'm feeling pretty low today, so I figured I’d come here to vent somewhere where people actually understand what this feels like.
Sending love to everyone out there fighting this beast. There are always those who defy the statistics, and I'm keeping everything crossed that you'll be one of them.

Yesterday marked exactly 16 months since my boyfriend passed away.... It is truly staggering how quickly time flies—it feels as if we were just sitting together at a coffee shop yesterday. He was gone almost overnight.

I still miss him terribly; there is this massive, overwhelming void inside me that has existed ever since he left. Fortunately, I have my job to keep me busy, which helps pass the time, but when the weekend rolls around and I am back home, the loneliness hits me quite hard. Even his "friends" seem to have moved on as if they had already forgotten him—not a single soul mentions him anymore. That makes things incredibly difficult for me. You just end up feeling so isolated in all of this.

Ashley Reed98 said:Yesterday marked 16 months since my boyfriend passed away... Time really does fly—it feels like just yesterday we were sitting together at a coffee shop, just enjoying each other's company. He was gone almost overnight.

I still miss him so incredibly much; there’s this massive, overwhelming void inside me that hasn't filled up since he left. Luckily, I have my job to keep me busy during the week—which helps quite a bit—but when the weekend hits and I'm back home, the loneliness really starts to settle in. It's hard because even his "friends" seem to have moved on or forgotten him; nobody ever brings him up. That part is so painful for me. You just end up feeling completely stranded in all of this.

I know exactly how you feel..

Hello,

I was wondering if anyone here has dealt with ovarian cancer and specifically looked into Mayo Clinic? Looking at their website, they seem primarily focused on organs like the lungs, liver, or pancreas... but what we are really looking at is that laser surgery for abdominal tumors resulting from complications with ovarian cancer. Just seeking some insight—mostly because the consultations themselves aren't exactly cheap, so if anyone has navigated a similar situation, I’d appreciate it. Thanks.

Rachel Williams, hang in there! 🙂
Talk to your mom—every single day. Talk, laugh, just soak it up as much as you can 🙂
Show her what an amazing daughter she has, how much she means to you, and remind her of the beautiful life she’s lived—if she’s heading out, make sure she knows all of that 🙂

Honestly, I don't get our medical system. My mom—same lung cancer, years of chronic bronchitis, constant coughing, smoker... she actually had a chest X-ray done for some minor rib issues about a year and a half before the diagnosis, and nobody flagged a thing.
I get how overwhelmed the healthcare system is, and it’s clear they just play by the numbers. Women my mom's age (58) are statistically more likely to deal with other stuff than lung cancer at the moment of diagnosis. And that’s how we ended up at Stage IV.
Regardless, you’re left with this bitterness, looking for someone to blame wherever you can, but at the end of the day, it comes down to what Angela Wright said—the cancer is what decided the outcome, not the doctors. That’s just the reality.

ruggedmarlin2 said:Hi there,

I was wondering if anyone dealing with ovarian cancer has visited the clinic in St. Jude? Looking at their website, they seem mostly focused on organs like the lungs, liver, or pancreas... but we’re looking into that laser surgery for abdominal tumors caused by ovarian cancer progression. Just trying to gather some info since the consultation itself is pretty pricey, so if anyone has dealt with a similar situation, I'd really appreciate it.

I can't speak to the clinic in St. Jude, but regarding the longest survival case for ovarian cancer, I actually found out about it right here on this forum. A user was posting about her mother, who I believe was sent from San Francisco to Aviano for treatment. Try searching the forum for "ovarian cancer" and "Aviano"—they are specialists for that diagnosis, so her posts should pop up. If I recall correctly, she was in remission for nearly ten years before passing away from something else entirely.
Good luck!

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Thank you all for the support and the kind words... After two days, they moved Mom from a standard hospital room to the ICU. They claim it’s because they needed the bed in the regular ward, even though she was doing her best there. Whatever the actual reason, Mom’s mental state has improved DRASTICALLY because the conditions are much better; her breathing is stabilizing, and she has a physical therapist working with her on mobility every single day. I’ve been back in the States since yesterday, and today I’m heading in to sit down with her doctor at the hospital—so, wish me luck! 🙂

On another note, does anyone have any advice on how to handle family drama? Like a broken record, I keep insisting that as long as Mom is 100% lucid, every decision regarding her future treatment and care must be hers alone. I refuse to force anything on her. On the other hand, I get nothing but constant lectures from her sister, who keeps preaching that we should put Mom in an assisted living facility near where *she* lives, simply because it would make things easier for HER and because SHE finds it so difficult that Mom is living alone. At this rate, I’m going to end up in a psych ward myself! 🙂🙂🙂

Thank you all for the support... I’m checking in with some heartbreaking news. At 1:05 last night, I lost my most precious rose, my dearest Mom. She took her last breath while I was holding her hand, stroking her frail, exhausted body... Things really took a turn for the worse over the last few days—fever, confusion, staring into space, sleeping more than usual. Then, in the final 48 hours, the pain became unbearable, and nothing we tried could touch it. She also developed terminal agitation; she was in such agony, calling out, moaning, crying, begging us to move her every couple of minutes. The emergency responders and the palliative care team arrived to give her an injection, which calmed her down slightly. Around 4 PM, she stopped talking. Her breathing became loud and rapid, like she was gasping for air. She slipped into a sort of semi-coma, her eyes rolled back, and I could feel her slipping away, even though she kept drifting back to us while Dad and I held her... Later, there was the death rattle, foam at the mouth, and her breathing just got shallower and shallower until it slowly faded out...

Forgive me for being so blunt... I wanted to be right there by her side when she took that final breath—after all, she was the one watching me take my very first... The images haunt me, and I just hope one day I can forget them...

But despite all that suffering, I am so incredibly grateful we made sure she could pass away at home, surrounded by those who love her most. Holding her hand in her warm little bed felt so much more right than if she had been in some sterile hospital facility...

I love you, Mom

urbanharbor15,

I am honestly so incredibly sorry for your loss.
You guys gave her such amazing care and support, staying right by her side until the very end.
She’s in a much better place now.

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urbanharbor15, I am so incredibly sorry about your mother. At least she passed away surrounded by the people who love her most. I can't quite bring myself to forgive the fact that my own father had to pass away all alone in a hospital room.

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urbanharbor15, I am so sorry. I can only hope there is some small measure of peace in knowing she isn't suffering anymore. 🙂

My mother arrived home from the hospital about an hour ago... one of these days, I will sit down and write a full treatise on the sheer absurdity and incompetence of our healthcare system, but today I am simply too exhausted... though, I suppose I am glad to be home with her.

urbanharbor15, she passed away surrounded by her loved ones... you did everything within your power for her. Let that be some comfort to you.🙂

urbanharbor15,

I am honestly so sorry to hear this...

Hang in there.

My mother passed away this afternoon as well... she was at home, and we were together... now there is no more pain, no more piles of pills, no more oxygen machines, and none of those other burdens...

Rachel Williams, I am so incredibly sorry... I just know those two are somewhere now, finally free from all that pain... I'm glad you were able to be home with your mom. It means everything during times like this...

Thank you everyone for the kind words. We laid Mom to rest yesterday. Since I’m not exactly a religious person, I asked her if there was anything beyond this life—just a tiny sign, even the smallest one, to let me know she was okay and that she made it where she needed to go. As we were lowering the casket into the grave yesterday, this white bird—maybe a seagull or a dove—just started circling right above us...

I truly believe your mom is in a much better place now too, Rachel 🙂

Rachel Williams, I am honestly so sorry for you.

Hang in there, both of you...

It’s just so heartbreaking—I actually found myself tearing up reading this—and it immediately brought all those memories of my husband's last ten days rushing back to me.