Robin Diaz4 said:Thank you for the advice. We’ve already started running into complications—my dad developed a fever, so his chemo has been pushed back indefinitely. I feel so helpless right now. Somehow, we went from knowing nothing to having a full diagnosis in just one week, and the plan was for him to start treatment immediately. I really held onto this hope that things would just work out and heal, and honestly, I was still feeling positive just yesterday... today, it's just pure despair. I simply wasn't ready for any of this—and truthfully, I'm still not.
I know exactly how you feel.
Sometimes I can't help but think that it might be easier to prepare oneself and manage expectations when it involves someone much older.
I’m trying, I really am... but it just won't come out.. When I look at my little girl—she’s only 1.5 years old—every single time I see her, this crushing thought flashes through my mind about how we might end up all alone. Then I look at him, and my head fills with these terrifying images of how cancer will suffocate him, or just consume him entirely; I find myself daydreaming about being somewhere else—somewhere far away where there is no sickness and nothing to remind me of any of this.. I’ve tried sitting down to write it all out in a journal, but there is such a tornado of thoughts swirling in my brain that my hand simply refuses to move. Lately, it’s always the same loop of thoughts: "It would be better if he stayed with her," "How will I manage on my own?" "Why him of all people?" "Please, just let him not suffer."
I know, I sound terrible—I really do—but I just can't seem to shake these thoughts from my mind..
I find myself snapping at the little one, losing my temper, or just not being able to play with her. I don't even want to leave the house because I'm terrified of what might happen if I leave him by himself—and then I worry about what might happen to me if I step foot outside with this attitude..
I don't even know who I am anymore.. For what it's worth, despite all the schooling and education I have
I have to admit, I truly admire everyone who actually knows how to handle facing a devastating illness like this... I try my best to "keep it together," but honestly, I’m struggling; I feel like I'm starting to fall apart. The crying spells are becoming more frequent, my head is constantly filled with these horrific scenarios about death, and the insomnia and fear—it's just constant. I catch myself wondering if it would have been better for my husband if he had stayed with his ex, who is living in Germany now—maybe they would be together, and perhaps even his medical care would be better off there. This is all just terrifying. I jump at every single groan he makes; he’s naturally a high-strung person, and until now, I could usually tune out his nervous outbursts, but lately, everything gets to me. It’s just too much... If I could, I’d just pack up and leave so I wouldn't have to witness all the agony he's going through. I know I sound terrible, but this is simply how I feel right now.
Keith Sanders6, my husband is taking Reglan, and it really helps manage his nausea.
Honestly, I feel like I should have reached out for professional help a few days ago—I’m starting to feel like I’m at my absolute breaking point just because of this feeling of helplessness and all this constant uncertainty... I have three kids, and they've gone through their fair share of rough patches and pain, but I have never, ever felt this level of helplessness before with my husband's illness.
stormyfalcon68 said:You just have to accept the situation as best you can and honestly, just push through one day at a time. That really is the smartest advice anyone ever gave me.
People told me the exact same thing. And honestly? It’s probably the hardest part to actually live by.
stormyfalcon68 said:A few days after chemo, my Dad experienced tremors in his hands and feet—a bit of nerve tingling—along with some mild numbness, especially in his legs. Fortunately, everything seemed to settle back to normal after a couple of days. In my experience, I think that's a pretty standard side effect of chemotherapy.
It’s such a relief to hear that she has an appetite and is actually gaining weight; just remember to take things one step at a time—slowly and patiently, just handling it day by day.
Honestly, it makes me feel so much better seeing that others are going through similar things. This whole illness... the way it affects everything, the total lack of control over how things progress—it's just overwhelming. My goodness...
Rachel Williams said:That’s actually quite common with chemo—my own mother completely lost sensation in her palms and feet and dealt with swelling; once she finished her treatment, she had to take diuretics for a while to get the edema down, and as time passed, the feeling gradually returned. I also remember reading a post on this thread from another user mentioning her father lost all sensation in his hands due to chemo, but he regained it eventually. You mentioned he’s losing weight—did the doctors prescribe anything like Prosure or Ensure shakes? Or perhaps Megostat? Both are available by prescription; those shakes are packed with calories and nutrients, while Megostat is specifically for stimulating appetite.
I read about that too, and now I'm all caught up! :-) His ankles swelled up a few days before the first round of chemo, but after the treatment, the swelling receded and it's gone now—aside from some tingling and that occasional loss of sensation just below the operated knee. He actually started gaining weight after the first round of chemo, though—but that was because he spent 20 days in the hematology ward. They initially suspected lymphoma, and since he couldn't sleep, he spent those 20 days wide awake, just sitting on the edge of the bed; his weight dropped off extremely fast—God, it was awful—he was just skin and bones, and I honestly felt like he might fall apart if I even touched him. He is receiving nutritional support via prescription, but now that he’s back home, he’s naturally hungry for everything—he’s been like a termite, eating whatever is within reach, so he just knocks back his nutritional supplements whenever he can. :-)
So, my husband just finished his second round of chemo. This time around, he’s been dealing with some nausea, fatigue, and those frustrating temperature swings—feeling hot one minute and chilled the next—plus a bit of a cough. All in all, he's holding up okay. The thing that’s actually weighing on my mind, though, is his leg. He had surgery a while back and has a prosthetic knee, but now he’s complaining about losing sensation in his leg; he's getting this tingling feeling below the knee. His doctor mentioned that this is somewhat normal—we're attributing it to the significant weight loss from being bedridden for twenty days—and suggested it might be due to some nerve compression. This all started right after that first round of chemo, and honestly, I'm just not sure what to make of it.
Angela Wright said:Neither high nor low—though those liver enzymes are running a bit elevated.
We got the results back from Friday; his GGT was at 75 (I believe the upper limit is around 50), and his white blood cell count hit about 27—but the doctor mentioned this morning that it’s likely just an effect from the Decortin. On a brighter note, she is actually quite pleased with how he’s progressing... He’s starting to meet others who are walking this same path, which I find really heartening since it helps him avoid having to constantly talk about the illness itself.
Chloe Alvarez said:Thanks for all the advice. You're right—he’s trying really hard to push me away, but I just won't let him, because I know deep down this is all just a reaction to everything we're going through. I tell him things will be okay when the timing is right, but honestly, mostly he's just telling himself that to escape the reality of the situation. Still... there's no point in walking away. 🙂 We still watch movies together, catch up on series, and live under the same roof—we're right there next to each other even if we aren't "doing" anything together. As difficult as it is, I'm staying; I'm making this sacrifice, and I just really hope I don't go down with the ship along with him. =/
From where I'm standing: I've dealt with plenty of situations in my life where all I truly needed was someone to simply be there by my side—someone to hold me while I fell apart, without needing anything else. Back then, since I didn't have that, I used to retreat into myself, retreating into this little pink bubble where everything felt perfect. I wrote a lot back then, but now... Times have changed. Writing doesn't really help me much anymore if there isn't a response coming back from someone; reading helps, sure, but I'm painfully aware that I could destroy myself by burying myself in books and isolation. If I do that, I'm only making things harder for my husband while he's sick—I won't be the support he needs. It's tough, especially because everyone else seemed to run away, and I just lack that one person who stays—someone I can count on to actually be there and not just disappear when things get heavy.
Chloe Alvarez said:First off, I just finished reading the last two pages here, and my heart truly goes out to everyone going through this—or those who have already navigated it. I found myself coming back to this thread because someone incredibly close to me lost their mother to illness last year. I’ve watched them spiral into a deep depression, fueled by that crushing feeling of helplessness and the weight of a potentially grim prognosis. It’s heartbreaking to see them pull away from everyone, including me. I try my best to set aside my own needs and emotions just to be there for them, but the distance seems to grow, and I feel completely lost on how to help. They won't talk to me about any of it—there’s no outlet, no release valve, nothing. Does anyone have any actual advice? How can I support them through this stage while they are still trying to help their mom manage the disease? The thing is, it’s really just the two of them against the world; they don't have much of a support system outside of each other...
Just stay by her side—you'll have to be her rock. That’s exactly what I find myself missing right now.
After spending a little over a month digging through everything—our own local forums, international boards, gathering stories, and looking at clinical results—I finally sat down today and truly processed what was written in his discharge summary from the Mayo Clinic. That mass is absolutely massive. First off, there’s a growth between the lungs and the ribs measuring 14x8x16 cm; you can actually see it nestled between two ribs, and I could swear that node has been sitting right there since last year—though, honestly, I haven't been able to find any clear data on whether microcellular lung cancer develops suddenly or creeps up gradually before aggressively expanding. :-( Then there is a 6x10 cm lymph node located between the heart and the lung lobe, plus a 3 cm node on the ligament between the liver and the stomach that is visible through the skin, along with a 3.5 cm formation in a swollen gland and several lesions within the lungs up to 1 cm. It feels like pure despair—just a total catastrophe.
I spent the day working through every single post in this thread, pulling together quite a bit of information, which has given me a long list of questions to bring to his pulmonologist... But now, after reading his discharge papers with much clearer eyes, I finally understand why she said there wasn't any hope. It feels like my hopes have taken a heavy hit today.
Man, those looks initially made me feel physically sick. It took me a little while to realize that people like that just need to be pitied for how shallow they can be...
He’s home right now—it’s actually his "off" day since his next chemo session isn't until Monday. He's finally starting to eat a bit more, gaining some weight, getting out of the house more... even the conversation feels different now. People have stopped talking because they’ve seen firsthand that the reality is nothing like the rumors. I wouldn't say I'm his sole support system, though I stay on top of everything; I talk to him about absolutely everything—except for the illness itself, because he simply doesn't want to go there.
I find myself repeating that exact sentiment to him every single day. :-) As for myself, I'm realizing that this is going to be a massive lesson in what true patience actually looks like.
Grace Ross20 said:In situations like this, you really start to realize how emotionally illiterate people can actually be—they just lack basic emotional intelligence.
Unfortunately, it seems like nobody ever taught them better; I honestly don't know what to tell you. But yeah, they just don't know how to carry themselves when things get this heavy.
For three months now, it’s been the same story—nobody even asks how Dad is doing, or how I am. Every now and then, someone might check in on me, but it's always so superficial.
And now, get ready for the absolute peak of it all. His sisters STILL haven't come to visit him. They'll call me out of the blue and cry over the phone, yet they actually have the nerve to complain to Mom and me, suggesting we aren't doing enough for him. Dad has been sick and bedridden for four months now, and they haven't shown up once. Not only that, but they actually mentioned they won't attend the funeral because they want to remember him the way he used to be—they don't want that image stuck in their heads, seeing him frail, sick, thin, silent, and unable to move. It is incredibly selfish and immature behavior for women who are well over 55.
Honey, please, draw your strength from your baby; you don't need these people right now—they can't provide the kind of support you truly need. Find your strength elsewhere, and try not to hold a grudge against them, simply because they aren't capable of being there. It would be a waste of breath trying to explain it to them.
Take care of yourself and your little one, and please reach out here whenever you need someone to talk to.
Thank you!
It isn't any better with his immediate family, either... He only has his brother and his mother left. Both of them love to act like they're smarter than everyone else, and they both just crave being the center of attention. This man is out there telling everyone that his brother is dying while he's lying in the hospital... Honestly, he looks terrible before starting his first round of chemo. The man was 6'7" and 265 lbs, and now he's down to 185 lbs... It was devastating, truly heartbreaking to see him like that—sick, on oxygen, unable to eat; damn cancer can really do a number on a person. But his brother... I mean, seriously, that's not the way to handle it. She would move heaven and earth for her sisters. And once he gets out of the hospital, both the brother and the mother started making up illnesses just to the point where they were at the ER every other night.
I'm drawing my strength from my little girl and from within myself—books have always been my first line of defense—but every single day, I realize just how hard it is to cope with this whole situation.
Rachel Williams said:It’s not quite the same thing, though it feels very similar—my mother was diagnosed with late-stage lung adenocarcinoma (mostly due to a series of medical mishaps and bureaucratic runarounds back then). At the time, we honestly weren't sure if she’d even make it to my wedding in ten months. Well, it’s been two years and seven months now, and I previously shared a post about how we survive that grueling cycle of waiting for check-ups every three weeks. Generally speaking, the prognosis for all lung cancers is grim, but statistics are just numbers on a page. My mom isn't a statistic; she’s my mom—a fiercely stubborn woman who lives by her own rules, and so it goes... In this fight, and in how she carries herself through it, I truly believe her spirit helps... Her doctor has actually called her a phoenix a few times now... and for good reason...
I’m not sure where you all are receiving care, but we are at Jordanovac. A lot of people tend to complain about that place, but after four years of intensive treatment—from manual therapy to everything they've thrown at us at both the Pulmonary clinic and the Mayo Clinic—we are eternally grateful to the team at Jordanovac, including all the doctors and nurses... they've been our rock.
The situation is absolute hell, plain and simple. Everything you and your twin are feeling right now is completely valid. Cancer doesn't just strike the patient; it hits everyone who loves them. It’s a shock to the entire system, and everyone is just trying to find a way to process it... Take those cold statistics and throw them out the window. Treat him like a brother, a son, a spouse, or a best friend, and make the most of every moment you have with love and laughter. Whether someone has cancer or not, none of us really know how much time we have left... We healthy people often take our time for granted, but life can change in an instant—just like a car accident on a random drive. And if I may offer one piece of advice: since you have a little one, focus on creating as many memories as possible. Build a library of moments you can show her in photos or tell her about when she’s older.🙂
Rachel Williams,
I’ve always been a person of books and mathematics (I actually tutor math)—they’ve always been my escape from reality, and as a mathematician, I simply refuse to accept statistics as destiny. I accepted the diagnosis for what it was, and immediately dove headfirst into research—reading everything, contacting clinics abroad, looking into other people's experiences, and filtering through mountains of information. But... what really hurts is how people react toward us. Both of us get looked at with this overwhelming pity. They think I’m delusional because I choose to believe in a positive outcome, even though I am fully aware of the gravity of what we are fighting. Look... whether you are a friend, an acquaintance, or a stranger, please just support me. Don't give me that "I'm so sorry" look and then walk away. This isn't my first time facing a difficult situation, but this is incomparable.
We are being treated in Miami, and he just finished his first round of chemo. The doctor is wonderful—very transparent, tells us everything openly. She doesn't bring up the statistics because I made it clear to her exactly what I think about probabilities and odds, especially since we don't even know the exact stage of the diagnosis yet. From what I've gathered, the mass is massive—about 16x14x8cm—situated between the heart and the lungs and around the bronchi, affecting both lungs. Everything else on the CT scan looks okay, aside from some slightly enlarged lymph nodes.
Hello everyone! I’ve been reading through your posts for a few days now, but there is just so much information here—it feels overwhelming to try and catch up on everything at once. In the end, I decided to step forward and join the conversation to share my own story—mostly just to unburden my soul—because everyone around me seems to have vanished. I’ve found myself standing alone in this incredibly difficult situation, and I felt that here, I might actually find the understanding I so desperately need..
To give you some context, my husband was diagnosed with small cell lung cancer about twenty days ago, following several months of being hospitalized without a clear answer. We’ve both accepted the diagnosis as best we can—as much as one can, really. I would truly value hearing from anyone else who has fought, or is currently fighting, this absolute monster of a disease.
On a personal level, though, I feel like I am falling apart. Everyone I thought I could rely on for support has simply disappeared; my husband’s brother and my own friends have essentially written me off—labeling me as irrational or incapable—basically implying that since my husband is already halfway gone, there's no point in helping. They just stepped away. On top of all this, I have a little baby who needs constant attention, yet I find myself retreating into the worlds of books and mathematics just to cope. I am terrified that I won't be able to provide him with everything he needs—both the physical care and the emotional strength.
If anyone has advice, a kind word, or even just a small bit of comfort... anything would mean the world to me right now.