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

Ethan Cook27 said:Thank you... he actually handled the chemotherapy reasonably well, going wherever he could, fighting... but now that it’s passed, it is as if someone flipped a switch in his brain; communication is impossible, he just curses and says it would be better if he were dead... I wouldn't say anything if the chemo hadn't helped and things weren't looking better... the worst part is that Mom is alone with him... and she is already reaching the end of her strength.

Why does he feel it's best to end it all? It is simply because he is sick right now and cannot see a way out. My mother spent a long time in the hospital with a woman who was 94 years old. Yes, they were treating a 94-year-old for ovarian cancer, and yet she still possessed a will to live. You learn the most from roommates like that...🍿

In situations like this, I find myself leaning on cynicism. We moved past that stage of total helplessness, and I would simply turn it around—telling her, "Oh, poor thing, but we'll deal with it," or perhaps, "The numbers don't matter, tomorrow a car might just run you over anyway," or even, "It's beautiful and sunny outside, shall we go grab a coffee?"

Everything comes down to the individual. My father is also home alone with Mom, and I admire both of them deeply. I especially admire him for finding ways to coax her through it even today; when she can't eat, he tricks her into taking a spoonful, almost like you would with a small child. For him—and I suppose for all of us—this struggle is a game without boundaries...

Mom is always occupied with something. Every year brings a new hobby. We only discuss her illness when a specific problem arises; otherwise, we try not to remind her of everything that likely weighs on her. Every morning starts with the question, "So, what are you doing today?" and we have used that question since day one. I often ask her, "Do you feel like doing something?" and regardless of her answer, I usually don't fulfill it. When I sense she has somewhat given up on having a desire, I surprise her. These are the little things, those seemingly trivial reasons that make her feel just a bit better...

For the last three days, I have been in a state of constant anxiety. My boyfriend will remark, "What of it? It isn't the first time." And it is true; in eight and a half years, she has had five or six exceptionally difficult periods, and each time, she rose above them. The initial prognosis was that we could be happy if she survived six months, or if she made it through the first cycle... it was a mountain of uncertainty, but through shared joy and struggle, she is still here, and even the doctors are surprised...👍 I remember those early days so clearly, the crying, and seeing her start to give up, before that turning point occurred which continues to carry her forward...

I wrote all of this to try and shed a little light on your path, hoping you might find a common spark to move forward together! Just stay brave, for luck favors the brave...🙂

I think the issue is that he’s finished his treatment and now he’s just sitting there doing nothing, but he isn't quite in a position to declare victory yet either. It’s wearing him down. You know that feeling of endless waiting in a trench—not knowing when the enemy is going to open fire again, or if you'll even make it out alive if they send you into no man's land.
He needs to find some way to engage with his health—boosting his immune system, getting some physical activity in—anything to give him back a sense of agency and control over the situation.

Like they say, "Mom is a lioness." I remember when you guys were over in Aviano. She truly endured everything. Up until now, the only person I knew who could stomach that much Chemotherapy was the late Vedran, and she’s actually holding up even better than he did. She is exceptional and can serve as an inspiration to others, just as you can through your support.

Hemoglobin levels in oncology patients are best improved through a transfusion.

Angela Wright said:I suspect the issue lies in the fact that he’s completed his primary treatment and now finds himself in this limbo where nothing more can be done, yet he isn't quite ready to claim victory either. It seems to be draining him... you know that feeling of endless waiting in a trench, never knowing when the enemy will fire again, or if you'll even survive if they send you into no man's land.
He really needs to find some way to engage with his health—boosting his immunity, perhaps some light physical activity... anything to restore that sense of agency and control over his own situation.

Well, Mom is a lioness. I clearly remember when you all traveled to Aviano. She truly endured everything. Until now, the only one I knew who could withstand such intense Chemotherapy was the late Vedran, and she has actually managed even more than he did. She is exceptional and serves as an inspiration to others, much as you do through your unwavering support.

Hemoglobin levels in oncology patients are most effectively raised via transfusion.

Thank you, Angela Wright! We are acutely aware of it all, and it reminds me of something a professor once told me back in college: "You remember every single day of the struggle; you know exactly where you stood at any given hour."

It is a stroke of luck that Mom experienced medical care abroad, which felt more like a luxury getaway compared to the reality here in Pula. She met fighters of all ages there and absorbed some of the energy that keeps them going. She has been receiving Chemotherapy in Pula for a while now, and I can tell she’s reaching her limit; her body is exhausted, even if her spirit refuses to surrender. She is currently on an IV drip. I’m not entirely sure of the specific medication, but it provides her with strength. The latest news is that the import of the medication has been approved, so we are hoping she can begin that regimen very soon.

Benjamin Grant6, I remember reading your posts back when my own mother was fighting this same cancer; unfortunately, she lost that battle after two years.
Now, I find myself back here again because my father-in-law has reached the terminal stage of esophageal cancer, and we’re all just left wondering how much time he really has left.

I truly admire the strength your mother showed throughout her fight, and seeing how she refuses to give up gives me hope that she can keep pushing forward.

Urgent request: if anyone happens to have Megestrol available to sell or give away, please contact Sandra in Rijeka at 095 573 7900. It is currently out of stock in every single pharmacy in the US. We have placed an order, but there is no word on when it will arrive. Thank you!

Nicholas Price18 said:Urgent request: if anyone happens to have some Megestrol on hand to sell or donate, please reach out to Sandra in Rijeka at 095 573 7900. It's currently unavailable in any pharmacy across the US; we've placed an order, but there's no telling when it will actually arrive... Thank you so much!

The word is that it should arrive by late August (according to Halmed, the supplier).
I actually managed to find it at a pharmacy in Dug Sela; specifically, the Grgošić pharmacy located at 17 Josip Zorić St, 10370, Dug Sela.
My mother-in-law mentioned they supposedly received some in Daruvar as well.
It might also be worth asking your local clinic if they have any unused supplies lying around; my mother-in-law's clinic actually gave us a half-used pack she had, which someone had likely donated.

Amanda Miller69 said:Benjamin Grant6, I still remember when my own mother was fighting this same cancer... though unfortunately, she lost that battle after two years.
I find myself back here again because my father-in-law has reached the terminal stage of esophageal cancer, and we are left wondering how much time he truly has left.

I truly admire your mother for everything she managed to achieve; her resilience is remarkable, and I sincerely hope she continues to hold her ground...

I am so sorry to hear that you are facing such a grueling battle once again. Regardless of the outcome, one must fight until the very end.

You learn so much about yourself and those around you when someone close falls ill... it certainly teaches you to cherish every single day.

Angela Wright said:It’s impossible to predict how long someone will live; there are just too many variables at play.
Hold on a second and actually listen to what's going on here first. It doesn't necessarily mean it's a worst-case scenario.
As for the pain itself, it can be managed quite effectively—that’s literally what anesthesiologists are trained for. I happen to know a neighbor who dealt with something similar to a worst-case situation and didn't experience any pain at all.

The doctor told me: GIST. When I asked where the primary site was, he wouldn't give me a straight answer. They sent her to the major medical center in the city. Once she got there, they said: surgery.
I haven't seen the discharge papers yet, but my mom says they mentioned two massive growths, maybe something like 14 and 11 cm.

Amanda Miller69 said:The word is it should arrive by late August (according to Halmed, the supplier).
I found it at a pharmacy in Dug Sela; specifically the Grgošić pharmacy at 17 Josip Zorić Blvd, 10370, Dug Sela.
My mother-in-law mentioned they supposedly got some in Daruvar too.
Also, check with your local clinic to see if they have any leftover supplies. My mother-in-law's clinic actually gave us one partially used dose she had lying around from a donation.

Thanks so much!

Nicholas Price18 said:Thank you so much!

It’s definitely no longer available in Dug Sela; apparently, they are working through some sort of re-registration process, so it should be back in stock across the entire US by September at the latest.

My father-in-law is back from the hospital, and he's looking quite frail. He’s barely eating anything, and whenever he tries to take a sip of water, it ends up coming right back up through his nose. It honestly looks like his body is just starting to shut down. Should I bring up the idea of a feeding tube with his doctor?
A home health nurse is stopping by on Monday, so I mentioned to my mother-in-law that she should ask if they can administer an IV. I'm not entirely sure if those visiting nurses are authorized to do that, though.
I have a feeling we don't have much time left. Every time he has a coughing fit, it exhausts him so much that he just falls asleep. He can't even walk anymore; my mother-in-law will try to help him sit up for a moment, but he immediately sinks back down into a lying position.
It’s all just incredibly heavy to deal with. :-(
The only silver lining is that my sister-in-law gave birth two days ago. However, unless it's just via video call, I highly doubt anyone will actually get to meet the new baby. She lives in Sweden, and there's no way she'll be able to travel anytime soon.
She won't be around to meet my little one; I still have about three and a half months to go.

Dana Martin87 said:The doctor just told me: GIST. When I asked where exactly the tumor was located, he wouldn't give me a straight answer. They sent her over to the major medical center in the city. Once they got there, they said: surgery.
I haven't seen the discharge papers myself, but my mom tells me they mentioned two massive growths—something like 14 and 11 cm.

You absolutely need to head to the University Hospital. We're talking about a rare diagnosis here, a specific type of sarcoma, and treatment usually involves oncology drugs like Sutent and Glivec. The most critical thing is getting those masses surgically removed as soon as possible. Since GIST affects the gastrointestinal tract, it can spread metastases very quickly from there. Fortunately, there are actually two effective drugs available, which is a relief because for most sarcomas, there aren't any adequate treatment options.
At the hospital, you should specifically ask for Dr. Santek or Dr. Herceg. In the US, they are among the top specialists when it comes to handling rare tumors.http://www.cancerresearchuk.org/abou...stromal-tumour

Fiza, look, a home health aide isn't allowed to administer an infusion on their own—that’s strictly a job for the local clinic staff. But maybe try making a deal with the visiting nurse; see if she’ll let your mom handle it under her own responsibility, provided she walks her through the process first.
You should also check in with that hospice volunteer group to see if they have any medical teams operating in the area who can step in if things get hairy.
To be honest, if I were in your shoes, I’d start looking for some kind of caregiver or even residential facility as soon as possible. Your mom just isn't going to be able to carry this entire load by herself, and you know that deep down. 😢
I am so incredibly sorry. Life really can be cruel sometimes.

My mom is battling ovarian cancer with metastases... she’s currently right in the middle of her second round of chemotherapy, so we have a follow-up PET scan coming up soon. I'm thinking it's probably the right time to start looking for a second opinion.

Can anyone recommend a specific doctor? And honestly, if we need to go private, that's totally fine too. We’re originally from the Midwest, but we won't think twice about traveling to Chicago or wherever else she needs to go.
I'm pretty sure some of this was mentioned on the previous pages, but man... it's just too much to go back and read through everything right now. It's exhausting.

Thanks in advance, and hang in there everyone—fight hard, for yourselves and for the people you love!

wanderingtinker81 said:My mother is battling ovarian cancer with metastases. She’s currently mid-way through her second round of chemotherapy and will be heading in for a follow-up PET scan soon, so I think it’s the right time to start looking for a second opinion.

Could anyone recommend a specific doctor? We're open to seeing someone privately if necessary. We live out in the Midwest, but traveling to a major hub like Chicago or wherever else is absolutely no issue.
I suspect some of this might have been mentioned on previous pages, but honestly, reading through everything right now is just too much to handle.

Thanks in advance, and hang in there—keep fighting for yourselves and your loved ones!

You might want to look into Dr. Majerović at the Mayo Clinic. He handled my mother's surgery during her terminal stage, and if it weren't for her body being able to take the hit, I truly believe she would have had several more years left.
She was dealing with the exact same type of cancer.

Angela Wright said:Fiza, home health aides aren't supposed to administer IV infusions on their own—that's strictly for an LOM, but maybe try reaching an agreement with the field nurse. Perhaps she could let Mom handle it under her own responsibility if needed, provided the nurse shows her exactly how it's done.
Also, you should definitely check with that hospice volunteer group to see if they have medical teams operating in the area who can step in when things get difficult.
Honestly, if I were you, I’d start looking for some kind of caregiver to assist Mom and perhaps look into inpatient facilities, because she isn't going to be able to manage this alone, as you well know. 😢
I am truly sorry; life really can be incredibly unfair.

I managed to find some volunteer care services in the local area; I've sent over an inquiry and am just waiting to hear back.
I also did some digging online and found that certain county hospitals (I'm looking at the ones near Bjelovar, Virovitica, and Požega) offer palliative care beds, though I'm not entirely sure how that actually works in practice or what the availability is like.
I still need to research the costs and requirements for inpatient care, and whether there's anything near Daruvar that won't completely break the bank. I have more surfing to do.

My mother-in-law is completely dependent on others; she doesn't drive, and she doesn't even know how to use an ATM, so I'm quite worried about how she'll manage on her own. My husband is heading out toward Daruvar after work tomorrow to take her shopping and pick up everything she needs.

Amanda Miller69 said:Maybe give Dr. Majerović a call over at the hospital. He performed surgery on my mom during her final stages, and honestly, if her body had held up better, I truly believe she would’ve had a few more years left in her.
She was battling the exact same type of cancer.

I am so incredibly sorry about your mom 😢

Thanks for the tip... I did some reading on those surgeries he does, and they sound pretty radical—I'm just not sure how she'd handle them, but I'll definitely sit down and talk it through with her.

If anyone else has any advice or suggestions, please, feel free to share.

Man, you always think these kinds of tragedies only happen to other people, but then reality hits and you realize nobody is immune... My mom is only 50, and there isn't even a family history of this.

I just got a call from the palliative care team over in Pakrac. They were asking for a contact number for my father-in-law's primary care physician; they plan to reach out to him directly and then get back to me regarding what kind of assistance they can offer and how we might move forward.

Does anyone happen to know if a primary care physician is able to prescribe medical oxygen? My father-in-law is struggling quite a bit with shortness of breath and is really gasping for air.
Also, does a feeding tube need to be ordered by both a surgeon and his primary doctor, and where is the actual procedure performed? I'm assuming it would be at a hospital.

Please forgive me if I'm asking any obvious or foolish questions—I think I’ve officially lost my mind dealing with all of this.

wanderingtinker81 As follows:
I am truly sorry to hear about your mother. 😢

Thank you. I’ve been reading up on the surgeries he’s proposing, and honestly, they sound pretty radical. I'm not entirely sure how she would react to such an intense approach, so I'll need to sit down and have a real conversation with her about it.

If anyone else happens to have any advice or recommendations, please feel free to share them.

It’s easy to fall into that trap of thinking these kinds of tragedies only happen to other people, but eventually, you realize that nobody is truly immune. My mother is only fifty, and even though there wasn't any specific genetic predisposition involved, life still found a way to throw this at us.

Thank you.

Unfortunately, illness doesn't play favorites; it strikes people of all ages and genders alike. Cancer has truly become one of the great scourges of our modern era.
It honestly baffles me. We live in an era where scientists have actually managed to engineer artificial organs—literally coaxing a cluster of cells to beat just like a real human heart. Yet, despite that level of biological mastery, we still haven't stumbled upon an adequate way to treat cancer. At its core, cancer is just a matter of cellular behavior, specifically the uncontrolled multiplication of cells. It seems fundamentally strange that we can successfully cultivate entirely new ones from scratch, yet we remain unable to stop existing ones from multiplying uncontrollably within the body. 🙄.

Amanda Miller69 said:The palliative care team from the local hospital contacted me. They were looking for a number from my father-in-law's primary care doctor; they plan to reach out to him and then let me know if and how they can step in to help.

Does anyone know if a primary care physician can prescribe medical oxygen? My father-in-law is struggling significantly with shortness of breath and just can't catch his wind.
Also, does a surgeon or the primary doctor need to sign off on a feeding tube, and where is that actually inserted? I’m assuming it happens at the hospital.

If I'm asking stupid questions, please bear with me—I'm losing my mind with all of this.

Only a pulmonologist can prescribe an oxygen concentrator. To be honest, I don't know if things have changed since I was more active in these discussions, but it isn't exactly straightforward. You have to carefully titrate the oxygen dose because too much can actually be harmful. Try having someone near Jordanovac look into getting a formal recommendation written up for him. You can get the equipment through Medicare.