Resources and support for families dealing with cancer and serious illness

Angela Wright said:No way, of course Dr. Grgic is going to keep seeing you. Most oncologists specialize in specific types of cancer anyway. It sounds like they’re just trying to reorganize things at the University Hospital, so what used to be standard practice feels totally unfair right now. They probably brought in some new staff, too. While my mom was being treated by Dr. Gamulin, she was finishing up her doctorate—which she’s likely done by now—so it makes sense she’s sticking to the area where she's most specialized. There's usually a set protocol for most cancers, so theoretically it shouldn't matter who's in charge, but since it's a major university hospital, they're always researching new methods based on whatever specific tumor type a specialist focuses on.

shadowheron4 said:Dear Angela Wright, unfortunately, I spoke with Dr. Grgic and he confirmed everything I said before was true. I just can't let him lead me on anymore. He’s honestly such a pathetic, miserable man. He basically admitted his hands are tied here and told me straight up that I need to find a new oncologist. It's absolutely unbelievable. When I told him I was going to take this to the press, he didn't even deny it—he just said I could, as long as I don't mention his name, because the poor guy is probably terrified of losing his job. I’ve already reached out to some other women I know who are also being treated by him, and they’ve all heard the rumors; everyone is in total shock. What on earth are we supposed to do now?🤷

koMišice said:

Kokice,
I'm so happy my story gives you some hope. Honestly, I feel amazing today! I go in for checkups every six months, and yeah, I get those pre-appointment jitters every single time, but mostly, it's fine. I live my life and work just like anyone else. Of course, I can't just forget about being sick—there isn't a day goes by where it doesn't cross my mind—but I've learned how to live with it. I've accepted it. I try to stay informed because, like they say, the better you know your enemy, the easier it is to fight back! But hey, everything happens in its own time, until we feel ready for the next step. I truly think your mom is on the right track; the fact that she’s already making changes shows just how much fighter spirit she has! Trust me, she is way stronger than you realize! You can never view this disease as a death sentence. We have to believe that even if there’s a relapse, there are still so many treatments out there and so much new research happening. We just have to hang in there and do everything in our power!
Your sweet mama is so lucky to have you!

Angela Wright said:To the Clinic Director, I’m writing this because I need to be extremely clear about my situation—I am formally requesting that Dr. Grgic be allowed to continue managing my case. There’s no way around it; he’s the one who knows my history, and switching now would be a disaster. Look, beyond the legal right of a patient to continuity of care, there’s a massive human element here that can’t be ignored. We’re talking about ethics and basic compassion. Dealing with an illness this severe is exhausting enough as it is—it's a constant uphill battle. To be told mid-treatment that I have to start from zero with a new doctor? That’s just cruel. Having to go through the whole cycle of introductions, trying to adjust to a new personality, and attempting to build trust all over again while I’m already fighting for my life... it's too much. It's unnecessary stress that I shouldn't have to shoulder. I’m asking you to do the right thing and prioritize medical stability and patient well-being. If this isn't resolved and I'm forced into a new rotation with someone else, I won't sit idly by. I am fully prepared to bring this matter to the Patient Rights Advocacy Group and, if necessary, take this story to the media to ensure the public understands how patients are being treated here. Please, let’s handle this professionally and humanely. Let Dr. Grgic stay on my case.
That’s honestly all you can do—anything else is just wasting your breath and burning through energy you're gonna need for the fight.
Please, reach out and share what you're going through on the forum too. www.carcinoms.com So, you might actually be able to get an official statement on this whole new situation through that channel—which means you probably won't even have to deal with all this crap on your own. Basically, we’re setting up an association these days that'll focus on these kinds of issues and problems instead of just dealing with being sick.

slyseal28 said:Thinking about it, this kind of split actually makes sense for new patients. It’s probably best if you’re seeing a specialist who lives and breathes one specific type of cancer—someone with that deep, narrow expertise. If they organize it that way, doctors end up focusing on specific tumors, which might lead to better data collection and figuring out which treatments actually work best for what.

But honestly? This whole thing is a mess for anyone already mid-treatment. Switching doctors while you're in the middle of everything is brutal—you have to start from scratch, meet someone new, and try to build that trust all over again. I'm really not sure I’d be okay with getting a new doctor right now. 🤷
I guess this shake-up had to happen eventually, but they could've handled the transition with a bit more empathy.😕
Either way, we need to hear the other side—the oncologists'. Are they even happy with how things are being split up?

Can't wait to head to the University Hospital to see the attending physician and get his take on the situation.

gentlemoose62 said:Sweetie,
I am truly heartened to hear that my journey offers you some comfort. Honestly, I am feeling wonderful today... I go in for my checkups every six months, and while the nerves always tend to kick in right before the appointment, most of the time, everything remains stable. I live my life and work just like anyone else. Of course, I can never truly push this illness out of my mind—there isn't a single day where it doesn't cross my thoughts—but I have finally learned how to coexist with it. I have accepted it, and I make a point of staying informed because, as the saying goes, the better you know your enemy, the easier it becomes to fight back... But then again, everything happens in its own time, until we realize we are ready for the next step. It seems to me that your mother is already moving in the right direction; the fact that she has initiated these changes herself speaks volumes about her resilience and her will to live. Please, be certain of this: she is far stronger than you might realize... This disease should never be viewed as a final sentence. One must hold onto the belief that even if a relapse occurs, there are still so many treatments available, and research into new ones is moving so intensely... We simply have to endure and do everything within our power to take care of ourselves.
Your mother is just so lucky to have you by her side!

Nancy Thomas18 said:Hi everyone,
I've been reading through this thread for a while now, going back through all the pages. I was personally diagnosed with colon carcinoma and went through two surgeries in just about a month. Being here, I’ve found comfort in all the kind things you guys say to one another. It's just me and my son—he’s studying in NYC, so I've been facing these crises mostly on my own, and that's how it'll continue for a bit. I really admire Angela Wright; I truly believe she's the kind of extraordinary person anyone would want by their side, whether they're healthy or sick. I also look up to Diana, who is such a fierce fighter, something I feel I'm still lacking. I'm just about to start chemo, and I have so many questions that I can't seem to find answers to. If anyone is willing to share some advice on nutrition, how to handle the chemo sessions, or what to expect regarding post-op complications, I would be so grateful. I'll keep reading and might reach out from time to time when things get rough, but generally, I'm here, and maybe one day I'll be able to help someone else with my own experience. Hang in there—we fight until the end.

Nancy Thomas18 said:Hello everyone
I have been reading through your posts for quite some time now, having scrolled through every single page in this thread... I was personally diagnosed with colon carcinoma and underwent two surgeries within a single month, finding a sense of solace here in the kind words you all share with one another... It is just me and my son, who is currently studying in NYC, so I have been navigating these crises alongside all of you, and I suspect I shall continue to do so... I truly admire Angela Wright; I believe you are an exceptional person that anyone would want by their side, whether in health or in sickness... And I also admire Diana, who is such a fierce fighter, something I feel I am still lacking... I am just about to begin chemotherapy and find myself with so many questions for which I cannot find answers... if anyone would be willing to write to me regarding nutrition, managing chemo, or dealing with post-operative complications, I would be most grateful... I will continue to read your stories and may reach out from time to time when things aren't going so well... but generally, I am here, and perhaps I might even be able to help someone else with my own experiences... Stay strong, and let us fight this until the very end...

Nancy Thomas18 said:Hi everyone,
I’ve been following this thread for quite some time now, reading through every single page. I was personally diagnosed with colon carcinoma and have already endured two surgeries within a single month. During all of this, I found solace right here, reading the kind words you all exchange with one another. It’s just me and my son—he’s studying in NYC—so while he’s away, I’ve been navigating these crises alongside all of you, and I suspect I'll be doing much the same moving forward. I truly admire Angela Wright; I believe she is an exceptional person whom anyone would want by their side, whether in health or in sickness. I also admire Grace Fowler, who possesses a fighting spirit that I sometimes feel I lack. I am about to begin chemotherapy, and I find myself with so many questions that I simply cannot find answers to. If anyone is willing to share insights regarding nutrition, managing chemo side effects, or dealing with post-operative complications, I would be incredibly grateful. I will continue to follow your updates and may reach out from time to time when things feel particularly heavy. For the most part, I am here, and perhaps one day I might even be able to offer help through my own experiences. Hang in there; we fight until the very end.

Nancy Thomas18 said:Hello, everyone.
I’ve been following this thread for quite a while now, reading through every single page. I was personally diagnosed with colon carcinoma and went through two surgeries in just a single month. During all of that, I found a strange kind of solace here, reading the kind words you all share with one another. It’s just me and my son right now—he’s studying in NYC—so I’ve been navigating these crises mostly on my own, though I feel close to you all. I have so much respect for Angela Wright; I truly believe she is the kind of exceptional person anyone would want by their side, whether in health or in sickness. And I admire Diana too; she is such a fierce fighter, something I feel I’m still struggling to find within myself. I’m about to start chemotherapy, and honestly, I have a mountain of questions that I can't seem to find answers to. If anyone would be willing to share some advice regarding nutrition, managing the chemo side effects, or dealing with post-op complications, I would be incredibly grateful. I’ll keep reading, and I might reach out from time to time when things get heavy. For the most part, I'm here, and perhaps one day I'll be able to offer some help to someone else based on what I go through. Hang in there. Let's fight this until the very end.

Nancy Thomas18 said:Hi everyone!
I've been reading through all your posts for a while now, going through every single page. I was diagnosed with colon cancer myself and went through two surgeries in just one month. Finding this group and all the kind words you share has been such a huge comfort to me. It's just me and my son right now—he's studying in NYC—so I've been leaning on this community through all my rough patches, and I know I'll keep doing that. I really admire Angela Wright; she seems like such an incredible person you'd want by your side whether life is good or bad. And I have so much respect for Diana, who is such a fighter, something I feel I'm still working on. I'm about to start chemo and I have so many questions that I can't seem to find answers to. If anyone is willing to share some tips on diet, managing chemo, or dealing with post-op complications, I would be so grateful. I'll keep reading and will reach out whenever things get heavy, but mostly, I'm just here... and maybe one day I can help someone else with what I learn. Hang in there, we're fighting this together till the end!

Nancy Thomas18 said:Hi everyone!
I’ve been reading through all your posts for quite a while now, and I honestly feel like I’ve read every single page on this thread. I’ve recently been diagnosed with colon carcinoma myself, and it’s been a whirlwind—I actually had two surgeries packed into just one month! During all that chaos, finding this community and reading all the beautiful, supportive things you say to one another has been such a huge comfort to me. It’s just me and my son right now, and since he’s away at college in NYC, I’ve really been leaning on all of you to help me get through these rough patches, and I know I’ll be doing the same moving forward. I have so much admiration for Angela Wright; I truly believe she’s the kind of exceptional person anyone would want by their side, whether life is going great or things are getting tough. And I also look up to Diana, who is such an incredible fighter—something I feel like I'm still trying to find within myself. I’m just about to start chemotherapy, and honestly, my head is spinning with questions that I can't seem to find answers to. If anyone would be willing to share some advice regarding nutrition, how to handle the chemo sessions, or what the recovery from surgery is like, I would be so incredibly grateful. I’ll be hanging out here reading your stories, and I’ll definitely reach out when things get heavy, because let's face it, there are days when I don't feel so great. But mostly, I'm here, and maybe one day I'll even be able to help someone else using my own experience. Hang in there, everyone—let's keep fighting until the very end!

Melissa Kim45 said:Greetings to everyone. 🙂

Even my mother’s cancer seems to be retreating. Her discharge papers state that her thoracic imaging shows a satisfactory intrathoracic status given the nature of the disease; they are monitoring an almost complete regression of the tumor infiltration in the core of the right lung, along with the satellite lesions in the upper right lobe. As for the medications... blah, blah, blah.
Current status: The patient is afebrile, though there is some mild tachypnea present. Orientation to time and place is somewhat impaired, and there is no evidence of peripheral lymphadenopathy. Upon auscultation, lung sounds reveal bilateral basal crepitations.

The diagnosis is Small Cell Lung Carcinoma of the right lung, ICD code C34.

They are bringing up electrolyte imbalance and SIADH again, but her last reading was 134. Honestly, I don't see why that's such an emergency that she had to be hooked up to two IV drips immediately. Sure, it’s a bit lower than ideal, but shouldn't we allow the body some breathing room to stabilize itself when things clearly seem to be leveling out? She has her eighth round of chemotherapy coming up, and frankly, I have no idea—I truly have no clue—how her system is going to handle that hit.
Despite those relatively positive test results, she’s weaker than I’ve ever seen her, struggling with constant constipation and painful cramping. Right now, she's relying on Bekunis to get things moving, along with a suppository whenever the situation becomes unbearable.😁 It provides some relief, but it always comes accompanied by those agonizing cramps. She used to deal with ulcers and relied on Peptoran, but now she’s transitioned to Controloc. As for getting a gastroscopy done? That is absolutely out of the question.

Mentally speaking, I think she’s doing alright. She isn't making those outbursts anymore—no more demands for an illegitimate child or questioning where her father is. However, being around her remains an uphill battle; that hasn't changed. To be honest, I can never truly gauge the reality of her situation when she speaks to me. It’s like trying to read a map in a storm. If she tells me she can't urinate, it might mean she actually can't, or it could simply mean she lost track of time and forgot she went an hour or two ago. Because of the SIADH, she’s strictly limited to about one liter of fluid a day, so there is no way she should be passing liters of liquid. After her seventh round of chemotherapy, there was one instance where she suffered from severe water retention; she was visibly swollen, with those heavy bags under her eyes. A single dose of Lasix cleared it right up, and she’s been fine since.

I suppose I should be feeling satisfied. I believe I mentioned before that I wasn't even certain she would make it through to her second round of chemo. Well, here we are—she has already pushed through seven. There are moments when she is in pain (though, truthfully, how can I ever truly know if she is hurting?), and in those instances, Plivadon does the trick.😲 Or perhaps Voltaren—which I always suggest she take alongside Peptoran. Honestly, I can't tell if she’s just looking for a quick pill or if she’s in genuine agony. It might even be a case of her losing her sense of perception; for instance, she'll swear up and down that a certain pâté is delicious, completely oblivious to the fact that the pastry she's eating is loaded with margarine. 😁

Every single one of her prescriptions is at the absolute minimum dosage; even then, she consistently finds clever ways to manage on her own. She has quite the affinity for pills.😁 I am closely monitoring her blood pressure. I make sure to wash her whenever she gets incontinent, but despite all those challenges, she is still capable of going for a short walk.

Listen, everyone, please, don't lose heart. My mother is 71 years old now, and she simply wants to live. She’s become incredibly suggestible at this stage. Honestly, there are times when what I tell her isn't even strictly true—or frankly, I have no idea what I'm talking about—but I say it anyway if I feel it might offer her some peace of mind. It’s like providing a bit of psychological comfort where the facts fall short. This might just be a temporary reprieve, I suppose, but one can only hope.

Never lose hope. Nancy Thomas18, hang in there, Grace Fowler, stay strong. To everyone else out there—guys and girls alike—keep fighting. How are those of you battling illness doing? And how about those of you carrying the weight of caregiving? We’re the only ones who truly understand the depth of that struggle. Is it incredibly, damnably difficult? Yes, it is.

May God grant you all strength.👍

Melissa Kim45 said:Hello to everyone... 🙂

Even with my mother’s cancer starting to recede, the discharge papers are written in that typical, clinical jargon... It says the thoracic imaging shows a satisfactory intrathoracic status given the nature of the illness, noting an almost complete regression of the tumor infiltration in the core of the right lung, along with the satellite lesions in the upper right lobe. Then it just moves on to the medications, blah blah blah...
Current status: afebrile, showing slight tachypnea, somewhat disoriented regarding time and place, with no peripheral lymphadenopathy noted. Lungs: bilateral basal breath sounds present...

The diagnosis is small cell carcinoma of the right lung, specifically C 34...

They are bringing up electrolyte imbalances and SIADH again, though her sodium was at 134 last time, and I truly fail to see why that was such an emergency requiring two immediate IV infusions... I realize it is technically lower than the ideal range, but shouldn't we perhaps allow the body to regulate itself a bit when it clearly seems—or at least appears to be—stabilizing... She has her eighth round of chemotherapy approaching, and I simply don't know, I really don't know how she is going to manage that...
Despite those relatively positive test results, she seems weaker than ever and is struggling with constipation and cramping... She’s currently relying on Bekunis and a suppository whenever things start moving...😁 It provides some relief, though it’s always accompanied by those nagging cramps... She used to deal with ulcers and was on Peptoran, but now they have her taking Controloc, and as for a gastroscopy? That isn't even an option in her mind...

Mentally speaking, I believe she is doing alright. As far as her psychological state goes, there aren't those outbursts anymore—the declarations about wanting an illegitimate child or questioning where her father is... though, admittedly, being with her remains quite difficult. To be perfectly honest, I can never truly gauge the reality of a situation when she speaks to me. If she claims she cannot urinate, it might simply mean she forgot that she actually went an hour or two ago... Given the SIADH, she is limited to drinking no more than one liter of fluid a day, so it is certainly impossible for her to be passing liters of urine. Since her seventh round of chemotherapy, there was only one instance where she suffered from severe water retention; she became quite swollen, with those heavy bags appearing under her eyes. A single dose of Lasix resolved that issue, and things have been fine since...

I suppose I ought to be satisfied... I believe I mentioned before that I wasn't entirely certain she would even have the strength to make it through to the second round of chemo. Well, here we are—she has already pushed through the seventh... Occasionally there is pain (though how one is truly supposed to discern if it is pain or something else, I cannot say) and Plivadon seems to handle that...😲 ...or perhaps some Voltaren (which I always provide alongside the Peptoran). To be honest, I can't quite tell if she is simply looking for a pill or if she is actually in physical pain. It is entirely possible that she fails to recognize what she is consuming; for instance, one might serve her pastries made with margarine while she insists they are merely fine pâté... 😁

She keeps all her medications at the absolute minimum dosage, though she frequently finds clever ways to manage on her own... She does have quite a fondness for pills.😁 I am keeping a close eye on her blood pressure and making sure she stays clean when things get a bit messy... but despite everything, she is still capable of a short little walk...

People, please, don't give up. My mother is seventy-one years old, and she simply wants to live... She is terribly suggestible, so if I tell her something that isn't strictly true—or perhaps I'm just speaking without having any real clue what I'm talking about—I find myself saying it anyway, provided I feel it might offer her some comfort... It’s likely just a brief reprieve, though I can't say for certain...

Never lose hope. Nancy Thomas18, hang in there, Grace Fowler, stay strong... Ladies and gentlemen, please, just hold on. How are those of you battling illness—and those of you carrying the weight of caring for them—doing? Only we truly understand that struggle... Because if it is incredibly difficult, it certainly is...

May God grant you all strength...👍