Support resources for families dealing with cancer and other serious illnesses

This is my first time ever posting on a forum, so everything feels a little strange, but I’m hoping I can find my way around. Just like all of you here, we’re basically part of a family united by the fight against this disease. My father has tongue cancer (plano-cellular carcinoma), and he underwent surgery back in April at the New Hospital under Professor Virag. At that time, they staged the cancer as T4N1M0. He had to undergo a "commando" procedure—which means removing the affected part of the tongue along with part or all of the jaw and the lymph nodes in the neck, including the neck muscle. It’s considered one of those massive, incredibly complex surgeries. Honestly, I lost track of the details for a second, but my dad is 72, the primary tumor was about 4cm, and there was a secondary one in the lymph nodes measuring about 1cm. Now, five months after the surgery, we just got his follow-up CT scan results, and things look even worse than when we started. Two tumors have returned on the back of his tongue—one up to 3cm and another on the front reaching 2.5cm. On top of that, there’s something showing up on his lungs; they mentioned a bronchoscopy, but the doctors think it would just be unnecessary suffering for him. Another surgery isn't an option either, because they'd have to remove what's left of his tongue, and according to the doctor, there’s just no point in doing that. Right now, he’s undergoing radiation therapy, and watching him struggle through it is absolutely heartbreaking. The reason I’m reaching out is to connect with anyone who has gone through something similar. So far, we’ve been managing his pain with Lumidol and Voltaren, sometimes using Valium, but now he’s moved onto 25mcg Fentanyl Patches.

I’m posting this because of one very specific reason.
Last Tuesday, my mother-in-law was diagnosed with a brain tumor (3x4 cm). Before we even knew if surgery was an option, we were frantically digging into information about the disease, all our potential options, and looking for the best neurosurgeons in the country. We found ourselves stuck in this incredibly heavy situation, paralyzed by indecision. While we were waiting in Rijeka for the neurosurgeons to review her head CT and give us any kind of word, a friend of my father-in-law managed to pull some strings to get her seen in Washington, D.C. We were still reeling from the shock of the diagnosis, yet on the flip side, we were being forced to make a massive, life-altering decision within half a day without having nearly enough information.
At first, we were asking around about Dr. Paladin over at the main hospital, who is basically considered the top neurosurgeon in the entire US, but we found out he won't even see a patient without an MRI already done. So, we made arrangements for her to be admitted to the main hospital instead. Honestly, we didn't even know what to decide because we had no idea if surgery would even be possible in the first place.
After sitting through the whole week from Tuesday to the following Monday without getting any real updates in Rijeka, we sat down and talked it through with people who had gone through this before, along with some nurses and doctors here in Rijeka. Ultimately, the decision was made to go to the hospital in Dubrava.
My mother-in-law was admitted on Tuesday, and we just got off the phone with her today—she's actually awake after the tumor surgery!!!
They jumped right in, doing the CT, the MRI, and all the other necessary tests immediately. By Thursday, they had her prepped for surgery, she went under yesterday, and she was already awake by yesterday afternoon! Today, she was moved from the ICU to intensive care, and she’s feeling good. She was operated on by Prof. Jelicic and Dr. Hudik (if I remembered that name correctly).
In any case, they did a phenomenal job. For anyone else finding themselves in this agonizing limbo, wondering whether they should head to Washington, D.C., or stay local, I would absolutely recommend Washington, D.C. The reality is that it's the hub for everything—the equipment, the specialists, the facilities, all of it.
My father-in-law was just telling me that the difference is night and day; he said if he had known then what he knows now, he wouldn't have hesitated for a single second.
I really hope our experience helps even just a tiny bit for someone else who might find themselves in this same difficult and unfortunate situation.
Wishing you all the best of luck—stay brave and stay strong.

wanderingtiger7 said:I’m posting this for one very specific reason.
Last Tuesday, my mother-in-law was diagnosed with a brain tumor (3x4 cm). Before we even knew if surgery was an option, we started frantically researching the disease, treatment paths, and the best neurosurgeons in America. We found ourselves stuck in this incredibly heavy situation, paralyzed by uncertainty. While we were waiting in Rijeka for the neurosurgeons to review her head CT and give us their take, a friend of my father-in-law managed to pull some strings to get us connected in Washington, D.C. We were still reeling from the shock of the diagnosis, yet suddenly we had to make a massive life-altering decision within half a day—all without having enough information to guide us.
Initially, we looked into Dr. Paladin at the main hospital, who is considered the top neurosurgeon in the country, but we learned he wouldn't see her without an MRI first. So, we arranged for her to be admitted to the main hospital instead. Honestly, we were flying blind because we didn't even know if surgery was possible in the first place.
After sitting through the entire week from Tuesday to the following Monday without getting any real updates in Rijeka, we consulted with people who had been through this before, along with nurses and doctors locally. Ultimately, we decided to go with the facility in Dubrava.
She was admitted on Tuesday, and we just spoke to her on the phone today—right after her tumor surgery!!!
They immediately ran the CT, MR, and all the necessary tests; they prepped her for surgery on Thursday; she went under yesterday and was already awake by the afternoon; and today, she’s been moved from the shock room to intensive care and is feeling good. She was operated on by Prof. Jelicic and Dr. Hudik (if I remembered that name correctly).
In any case, they did a phenomenal job. For anyone else caught in this kind of limbo, wondering whether to head to Washington, D.C., I would highly recommend it. The reality is that it’s the hub for everything—the equipment, the specialists, the facilities, you name it.
My father-in-law was just telling me that the difference is night and day, and if he had known then what he knows now, he wouldn't have hesitated for a single second.
I really hope our experience can help someone else who might find themselves in this difficult and unfortunate situation.
Wishing you all the best—stay brave and stay strong.

Do they know if it's malignant or benign yet? I mean, you can't be 100% certain without a pathology report, but they usually have a pretty good idea of what they're dealing with.

I'm so glad everything went well😍, because you never truly know which centers will be touched during surgery or what neurological side effects might manifest later. Some people deal with total amnesia, losing the ability to speak, calculate, or walk. That said, many of those setbacks can be managed with therapy, and people gradually recover.

slyseal28 said:Dear friends, we would like to remind you about the upcoming Terry Fox Run 2008, taking place on September 28th, 2008, at the local park in Washington, D.C. Activities kick off at 2:00 PM, with the actual race scheduled for 4:00 PM. This year’s charity event is proudly organized by MPG LLC, the Embassy of Canada, the American Cancer Society, Washington Holding, and the Esplanada Hotel. With the dedicated support of our "For a New Day" Association—composed of those fighting cancer, their families, and close friends—we invite both corporations and individual citizens to join us. You can show your support by running, walking, cycling, skating, making a donation prior to the race, or even volunteering on the day itself. A wonderful lineup of entertainment will be hosted by the well-known humanitarian Sonja Šarunić.

The festivities begin at 2:00 PM with a major concert by Luka Nižetić, and right at the start, attendees will have the chance to win some fantastic prizes through raffle tickets—including two bicycles that can be used immediately to participate in the race...

The official opening ceremony begins at 3:30 PM with welcoming remarks from the organizers and sponsors, followed by the start of the race promptly at 4:00 PM. After a few extra surprises during the first half of the event, once the runners, cyclists, and skaters have set off, the atmosphere will be kept lively by performances from Branko Bogunović - PIF, the B2 Blues Band, the funky rock group Pokus, and the pop group En Faca from Rijeka...

Once the race concludes, the program continues with a raffle where participants can win mobile phones, gear, and other various prizes. The charity stalls and the En Faca concert will remain active until 6:30 PM.

You can read more about the full schedule here.

So please, everyone, do come...

Thank you, slyseal28, for all these updates. I was a bit late with my registration last year, though I did make it out to the park, so this year I fully intend to be there... provided the cold weather doesn't drive me away! Still, it truly warms my heart to see events like this exist. It matters to keep fighting...👍

Hey everyone!!!
I’m honestly praying I can actually manage to make it out to Jarun tomorrow.... I’m so close to home, so maybe I can just scrape together some energy from the bottom of my barrel if I have to.....
See ya there.............
Grace Fowler

Grace Fowler said:Hey everyone!!!
I'm honestly hoping I can make it out to Central Park tomorrow.... I'm so close to home that I'll just have to dig deep and find some extra energy...
See you there.............
Bill Clinton

Oh honey, it would be wonderful if you did🙂. But seriously, don't push yourself if you aren't feeling up to it.

I’m so sorry, I won't be able to make it... I'm not even in Chicago right now, but my heart is truly with all of you. I saw my oncologist yesterday to go over my CT scan results—it’s back, but we can't pinpoint where exactly. They’re sending me for a PET scan now to track it down. I have to admit, I'm feeling pretty scared for the first time. It’s only been three months since my chemo finished, and I was so certain I was in the clear, but now...?

Nancy Thomas18 said:I’m so sorry, I won't be able to make it... I'm not even in Chicago right now, but my heart is with all of you. I was at the oncologist's yesterday with my CT results—it showed something is wrong, but they can't pinpoint where. Now they're sending me for a PET scan because they have to find it. I'm scared. For the first time, I really am. It's only been three months since chemo ended. I was so sure I was in the clear, and now what?

I honestly don't know what the smart thing to say is here, other than just telling you to stay brave and strong, like you've always been. Maybe things aren't as bad as they look right now? Either way, I'm sending nothing but good vibes your way.

Nancy Thomas18 said:I won't be able to make it... I'm not even in New York City right now, but my heart is with all of you. Yesterday I was at the oncologist with my CT results—they told me it came back, but they don't know where it is. Now they've sent me for a PET scan because they need to track it down. I'm scared; for the first time, I really am. It’s only been three months since chemo, and I was so certain I was cured. And now?

How can they know from a CT scan that it's back if they don't actually know where it is? If they're basing their suspicion on that scan, it should be visible on the CT.

Stay brave! Nothing is lost yet. This road is long and brutal, and you knew that from the start. Nothing has changed. Just keep pushing forward and try to arm yourself with some good vibes and optimism. I know that's easier said than done, but you have to find a way to shift your mindset internally. It will make things much easier to handle.

Grace Fowler Asks:
Greetings to everyone...
I am sincerely hoping that I will manage to make my way over to Jarun tomorrow... Since I'm so close to home, I suppose I'll just have to scrape together whatever energy I have left from my very last nerve...
See you later.............
Grace Fowler

The most vital thing is to direct all that energy toward your own healing... even if it means spending the entire manifestation just waving at people through the window...👍

How are you doing? Is there any news to report...

Pusa and hang in there...

Angela Wright said:How can they tell from the CT scan that it moved if they don't even know where it went? I mean, surely it shows up on the CT if that's what they're basing their suspicions on.

Stay strong! Nothing is lost yet. This journey is long and bumpy, and you knew that from the start. It hasn't changed. Just keep pushing forward bravely and try to arm yourself with good vibes and optimism. I know it's easy to say but much harder to actually do, but you've got to find that inner shift somehow. It will make everything so much easier...

The CT report mentions something about non-homogeneous structures... it seems to be located somewhere near the pelvic area or abdomen, especially since the pain is spreading through those areas.
But I'm not giving up... not yet!

Nancy Thomas18 said:The CT scan mentions something about non-homogeneous structures... it seems to be located near the small pelvis or abdomen, and the pain is somewhat widespread in those areas as well.
But I am not giving up... not yet!

Don't give up! Do not falter! I wish you so much courage and strength... If nothing else, the PET scan will surely uncover the issue...

Hey everyone,
I know so many of you are right in the middle of waiting on tests or results, so I didn't want to leave
anyone out... I just want to wish you all 👍👍👍...just because, it feels right.

Hang in there, guys!

Hello everyone

I’ve been lurking on this forum for a very long time, but I’ve never actually posted anything until now. First off, I need to express my deepest respect for all the fighters on this board, and of course, to Ivanna, who started this whole thing. Because of her, she made things easier for me and everyone else as we navigated the horrors we've faced—horrors we are still facing. My mother was diagnosed with leukemia just under a year ago, but unfortunately, the disease was too aggressive and too strong. By mid-August, she was gone. But I won't dwell on that right now, because she went through absolute hell during her ten-month battle, and our family did too. I’ve never written a single word here, but I’ve read everything, every single day. Believe me, reading your stories is the only thing that kept me from completely losing my mind. You people are my heroes. I owe it to you that I can even call myself somewhat "normal" today after everything. I never once fell into the trap of asking "why me?" or "why her?" because I know illness doesn't play favorites. Anyway, the reason I am finally speaking up is because of what someone under the name lescolxl wrote. Honestly, there is so much I could say, but I’ll keep it brief. I just want to address the part regarding the Anne Rukavina Foundation. What was written there is an absolute disgrace. To you—my dear—you have absolutely no idea what you are talking about. What the Rukavina family has accomplished deserves nothing but admiration. I know firsthand what they’ve endured because my mother died from the exact same type of leukemia as Anne. Sadly, she never lived to see a transplant, but consider this: before that foundation was established in America, there were only about 160 typed samples available. Today, there are over 4,000. That is a massive achievement. I’m not going to get into a long debate, but frankly, I sincerely hope that neither you nor anyone close to you ever needs something like this. You don't know what you're talking about, so stop spreading nonsense—especially here, where people are fighting for their lives!!

Austin Collins82 said:Hey everyone

I've been lurking on this forum for a long, long time, but I’ve never actually typed a single word until now. First off, I gotta say I have massive respect for all the fighters on here—and obviously Ivanna, who started all this. She made things a little easier for me and everyone else through all the absolute horrors we've dealt with and are still dealing with. My mom got hit with leukemia just under a year ago, but man, the disease was just too aggressive, too strong. She passed away in mid-August... but I won't get into that right now, because she went through literal hell during those 10 months of fighting, and honestly, so did our whole family. I’ve never posted anything here before, but I read this every single day, and believe me, this community is the only thing that kept me from completely losing my mind. You guys are all heroes to me. I owe it to you that I can even pretend to be somewhat "normal" today after everything. I never even fell into that trap of asking "why me?" or "why her?" because I know deep down that sickness doesn't play favorites. Anyway, the reason I’m finally speaking up is because of what that person under the name lescolxl wrote. Honestly, they could have said a lot more, but I’ll keep it brief. I just have to address that part about the Anne Rukavina Foundation—what was written there is a total disgrace. Listen, honey, you have absolutely no clue what you're talking about. What the Rukavina family has accomplished deserves nothing but pure admiration. I know firsthand what they've gone through because my mom died from the exact same type of leukemia as Anne. Sadly, she never made it to the transplant stage, but just look at the facts: before that foundation was set up in the US, there were only about 160 matched samples available, and now there are over 4,000. That is a massive deal. I'm not going to get into a huge debate, but I truly hope that neither you nor anyone close to you ever needs something like this... you clearly don't know what you're talking about, so stop spreading nonsense, especially in a place where people are literally fighting for their lives!!

Yeah, there's that old saying: a healthy person doesn't believe a sick one! Sad, but true.

We're still waiting on the bronchoscopy results. Maybe they'll be ready today, then we'll figure out the next move.

Hey everyone.

I also donated blood to the Anne Rukavina Foundation—among the first in my city to do so. Honestly, by the time everything actually comes to life, I'll be quite old. But I did it primarily to set an example for those around me, especially the younger generation, to encourage them to step up. You never know if it will be you or someone close to you who ends up needing help. I have children, grandchildren, nieces, their kids... I care deeply that at least they live in a world where every single medication is covered, where nobody has to hesitate to ask their doctor for the absolute best medical treatment, and where we aren't waiting months just to get basic tests done... I sincerely hope for all of that.

Rose, keep your head up! By the way, have you reached out to the Jedro Association over in Jordan? I believe they have plenty of useful advice.
Sending my regards to all the fighters out there.

Thanks for the tip. Honestly, I had no clue an Association like that even existed during these last four years. I'm definitely going to reach out to them.
My husband is getting discharged from the hospital today. All the biopsy and bronchoscopy results came back negative. The doctor is suggesting a PET scan next. That’s what we’ll do, then the doc can figure out the next move.
My husband's arms and shoulders are killing him. He says he just feels terrible overall. Being at home will probably make him feel a bit better.
The whole thing has just thrown me for a loop. The tests say nothing's wrong, but you can see the tumor on the CT. I guess I should be thinking everything is fine, but I'm just scared. Nothing makes sense right now.

Lisa White54 said:Thanks for the advice. During these past four years, I had no idea an association like that even existed. I will certainly reach out to them.
My husband is being discharged from the hospital today. All the results from the biopsy and bronchoscopy came back negative. The doctor is recommending a PET scan. We’ll go ahead with that, and then the doctor can decide on the next steps...
My husband's arms and shoulders are hurting terribly, and he says he just feels unwell. He’ll likely feel better once he's back home.
The whole situation has left me feeling quite shaken. The tests are negative, yet the tumor is visible on the CT scan. I suppose I should tell myself everything is fine, but I am terrified. Nothing seems clear...

Unfortunately, it is difficult for anything to feel clear when dealing with a disease like this. I truly believe your husband will find some strength once he is home, away from those sterile hospital walls, and can finally relax a little...

If a PET scan is necessary, it is worth doing. It took us a few months to work through the fear and get my mother to undergo hers. Even two weeks after her scan, she still feels drained, which makes me hope she won't have to do it again...

The results arrived this morning. An undefined mass was found in the left leg. My mother handled it by saying, "After that horrific diagnosis, this is nothing." They suspect an enlarged lymph node. She called the oncologist, and he called her back for an urgent appointment. I should know more tomorrow, and honestly, I am prepared for anything, though I refuse to believe everything is okay. So, I understand how you feel, and I hope things improve for all of us soon... We are all fighters. Let's stay strong!👍

Hey everyone. I'm pretty new to all of this, so I'll try to keep things brief.
My dad was recently diagnosed with adenocarcinoma involving lymph nodes along with some other complications, plus colon cancer at the start of the large intestine (I can't go into more detail right now since I don't have his official discharge papers in front of me).
As I'm sure you all know, finding out news like this tends to throw your whole world into total chaos.
He just finished his first round of chemo (out of four planned sessions), and I guess he actually handled it quite well.
There's one thing I'm curious about: Has anyone here had any experience using that Russian medication "Segidrin" (Hydrazine sulfate)?
Supposedly, it has a really positive effect on improving a patient's overall condition and might even help shrink tumors.
If anyone could help me out, I'd really appreciate it.

Hey everyone, I just wanted to jump in here and say that I truly feel for all of you on this thread.
I wish I could offer some actual comfort to those who need it, but honestly, I’m only here because I’m looking for those exact same words myself.
The truth is, I’m hurting—it’s an agonizing, deep-seated pain, and part of me feels like I might break under it too. My head knows one thing, but my heart and my gut are telling me something completely different; I can't help myself, the pain is just... it's driving me insane.
About ten days ago, my sweet grandma suffered a stroke. She’s slowly coming around, but her left side is paralyzed, and right now she’s communicating at the level of a small child; sometimes she isn't even aware of anything, but that isn't even the worst part of it all. On top of that, there's a kidney issue, and to make matters even worse, an advanced stage of carcinoma has spread to her liver—they aren't even sure where the primary site is yet, so they're running more tests.
And what am I supposed to do with that? The doctor was brutally honest with us; he said there’s nothing more they can do. She’s recovering from the stroke, sure, but the cancer is going to take her very soon. She’s 81, so we aren't holding onto any false hopes—she won't be with us much longer...
How am I supposed to come to terms with that? Every single day I look at her, and she is so full of strength, fighting so hard, but I can see her suffering. It hurts her, and she tells me through her strained, difficult voice how much she's in pain, even though she was never the type to ever complain or play the victim. She fights, and I see that spark of will to live in her eyes. I try to comfort her, telling her she’ll get better, that things will improve, and she just keeps repeating back to me, "better, better..." My goodness, people, it is just devastating. In the end, I have to be the strong one, but I'm realizing that now is when she’s going to need me most. Since the third day after this happened, my doctor prescribed some antidepressants just so I can function enough to get through the day, because until then, I wasn't sleeping, eating, or drinking anything; at night, I was even hallucinating, seeing her standing right next to me calling for help...
There was one day where I just stopped crying; I thought I had reached my limit, my eyes were so swollen they wouldn't open, and then suddenly, the tears just started pouring again... my heart feels like a wounded bird, and every few minutes I feel this tingling sensation in my head, almost like ants crawling inside my skull.
Every day I'm at the hospital, feeding her tea through the tube, comforting her, talking to her, and holding her hand, all while knowing deep down that there is no hope left...
She was so much more than just a grandmother to me. Throughout my whole life, she loved me more than anyone else in the world. No matter what I did, she was there for me; when nobody else understood me, she did. I spent so much of my childhood by her side, and she gave me everything... and now, she's leaving.
She is slipping away, and I am powerless to stop her.
I know the reality—I have a husband, I have my own child, I know I have to keep moving forward for them. My brain understands that perfectly, but the heart... the heart is a different story. I've always been overly emotional; feelings have always ruled me more than logic, so how am I supposed to handle this?
I'm terrified of her suffering. I'm scared to watch her every day as every breath she takes pulls her further away from this world. I don't know if I can bear watching her struggle like this. How am I supposed to accept her pain? Why does she have to suffer like this? Why can't she just pass away peacefully? Maybe that would be easier for me.
She never caused anyone a moment of grief in her entire life; why is she being condemned to this kind of agony? She didn't deserve this.
It feels like none of my family really gets how much I'm hurting. Everyone just says "life goes on" or "you have people to live for," and of course, I get that—I don't need someone to tell me. But my heart and my emotions are just louder than my reason.
I find myself wondering: Am I the only one who can't deal with such a sudden, painful loss? Are other people just less sensitive? Why can't I cope with this? Isn't it perfectly normal to be driven mad by the suffering of the person who loved and supported me my entire life, who looked after me like only the best grandmother could?
How am I supposed to find peace when no one understands me? Everyone talks about the "natural cycle of life," as if I haven't already accepted that old people eventually have to pass away. I know that, but it still hurts... it just hurts so much. How do I let her go? How do I stay behind? How am I supposed to survive the hell she is going through alongside her without losing my mind? How do I comfort her when she needs it so badly, when no one can comfort me? How am I supposed to help her when I'm the one who needs help?
Thanks to everyone for any word of comfort you can offer.