Support resources for families dealing with cancer and other serious illnesses

Lisa White54 said:Thanks for getting back to me. Honestly, I'm just having one of those absolute wreck days. I feel like I could just burst into tears. It's just one of those days. It'll pass, though.

Spill it. I'm in the same boat right now, and honestly, I don't even have any massive life crises going on at the moment.🙄

shadowmason6 said:gentletiger46, I’m honestly not thrilled about seeing new faces popping up on this forum, but I have to admit, the optimism dripping from your posts is exactly what we need right now.
I don't know much about Hodgkin, but a friend’s mom went through treatment the year before last. If I recall correctly, she did both chemo and radiation (I can double-check if anyone actually cares). She lost her hair—pretty much after a few cycles—but it all grew back, and apparently, it’s even thicker than before 🙂... and everything is fine now!
I haven't been posting much lately... just trying to recharge because last year absolutely drained me, both physically and mentally. Mom has more checkups coming up at the end of May. For now, she feels fantastic. It almost feels too good to be true, and I'm bracing myself so I don't get blindsided, especially after that diagnosis last year (Dukes C).

I wanted to chime in regarding preventing infections—back when Mom was doing chemo. We used tea tree oil. Using a dropper, we’d put a few drops on a tissue or mix it with water (about 20 drops per cup) and spray it around the room. Supposedly, it's one of the best natural disinfectants out there (gentletiger46, given your background, you probably know more about this than I do?)... plus, it smells nice. You just have to be careful about where you buy essential oils; you want the pure stuff, ideally from a pharmacy or a high-end health food store. A small bottle usually runs about 40-$17

Anyway, that’s my little contribution. I hope you all stay brave. Fingers crossed for success—keep fighting... especially you, slyseal28!

Oh, and tea tree oil is amazing.👍 We also used lavender, and when we were in Split, we used to get this custom blend of St. John's Wort, chamomile, and lavender from a local priest. The home health nurse would "massage" Mom with it every single day, and she never once developed a skin infection, nor did she ever get that odor that sometimes affects patients. She looked just like a doll.😢

The day before yesterday, I slapped the first Duragesic patch (25 mg/h) on my dad.
We were both just sitting there, counting down the minutes for it to kick in because his pain was absolutely brutal.
Well, those infamous 24 hours finally passed, and we waited for the relief to hit...
But then, when it came time to change things up, we realized the damn thing had peeled right off entirely. 😠
Remove that, put a fresh one on. 🤷

In the meantime, we've been giving him Tramal tablets and injections just to keep him stable until this settles down.

Does anyone have any info on what you can or can't mix with these patches?

casualrider21 said:The day before yesterday, I put my dad's first Duragesic patch on (25 mg/h).
We were practically counting down the minutes for it to kick in because his pain was absolutely brutal.
So, those famous 24 hours pass while we wait for the relief to hit...
But when it came time to change things up, we realized the patch had completely peeled off on its own.😠
Remove that, put a fresh one on. 🤷

In the meantime, we're giving him pills and Tramal injections until things settle down.

I need some info—what can or can't be mixed with these patches?

A patch shouldn't just fall off like that. Press it down hard and hold it there for at least a minute. Just to be safe, you can slap some regular medical tape over the top of it. Also, make sure you write the date you applied it so you don't lose track. That’s huge, because God forbid he ends up back in that much pain!

brisksurfer said:I suppose I celebrated far too early... 😢
Another medical blunder has occurred... apparently, when my dad went in for his follow-up CT last week, it didn't just confirm the lung cancer was still there, but showed it had grown from 2.5cm to 5cm. His bronchi seem fine now, likely thanks to the antibiotics. He went back to the hospital in Washington, D.C. today, and the doctor expressed confusion over why they only performed a bronchoscopy last time, given that it wasn't sufficient—they really should have done a biopsy as well. We have to wait until May 21st for the next round of tests, at which point he’ll be admitted to the hospital. This means it will have been six months since they first noticed changes in his lungs...
I honestly don't know what to do... this has left me in a state of absolute despair... 🙂

Every path seems to lead toward despair, yet if there is any way to avoid it, you simply shouldn't succumb to it; please, try not to let yourself fall apart. First and foremost, tears won't solve anything, and while you might try to hide them, people will see the reflection on your face, and worst of all, your father will feel it too; for a patient, having a stable emotional anchor and a sense of positivity is vital, as your own grief could easily manifest as restlessness for him...

I can only imagine how devastating it feels to wait that long for testing, but time tends to move quickly; before you know it, May 21st will be upon you...

My mother scheduled her marker tests and CT scan just seven days ago, only to be told, "Oh, ma'am, we can't get you in until May 5th." She played the hero this time, just smiling and replying, "Ah, right, well, at least I can come back a week later then." It always feels like a cycle of waiting, anticipation, and preparing for more results... unfortunately, this is the reality of life alongside someone fighting cancer, and one must accept these circumstances, however difficult they may be. Hang in there...

Lisa White54 said:The patch shouldn't just peel off on its own. Press down hard and hold it there for about a minute. If you want to be extra safe, you can slap some regular medical tape right over it. And seriously, write down the date you put it on so you don't lose track. It’s super important—you don't want to end up in agony if you miss a dose!

Yeah, I already noted the date and time. It lasts three days, then I swap it out for a new one.
I have no clue how it even came loose; I held it down for a solid minute, but honestly, my dad sweats way too much.
I just taped this one down with some other tape... it ain't going anywhere now.😉

Thx.

Hey everyone,
Over at the State Fairgrounds in Washington, D.C.—specifically in the pavilion near the West entrance—you can find the Healer from the Mecca bag in Morocco. They’re there every day from 10 AM to 3 PM, except for Sundays.
There’s no charge for this. Just a heads-up: bring your own water with you, because at the end of the treatment, he energizes the water, which anyone can drink even if they didn't undergo the session itself. The line gets pretty long, but they move through people quickly.
He was actually here in D.C. last year as well.

Here are a few links:
http://www.youtube.com/watch?v=BAtV6IqTRE4

... itelj.html

If you Google his name, you'll find plenty of results.
I hope this helps,
Kind regards and hang in there.

mistyridge5 - What's up? I just love knowing everything, and this stuff is pretty close to my field of expertise anyway.

brisksurfer and Lisa White54 - Oh man, I am so sorry. But hey, Angela Wright made a great point—a CT scan shows shapes, but what really matters is whether that specific spot on the CT is actually metabolically active. For instance, I have a growth on my liver, but when we ran the PET scan, it came back negative. That means it isn't showing that rapid metabolism linked to malignant tumors, so there's nothing to fear.

brisksurfer - I actually carry a little notebook everywhere I go. I write down every single thing I'm told, along with any useful bits I pick up from forums or the internet (my doctor just laughs at me, though he usually loses his breath when I start grilling him with questions!). It’s how I make sure I don't forget anything; I jot my questions down at home once I've calmed down. Why am I telling you all this? Well, we all know what the healthcare system is like here—overburdened and totally dehumanized. So, I stick to a policy of "help yourself first, then the doctor will help you," and I ask twice, check twice, and basically pester them. You should definitely write down exactly what they told you needed to be done immediately. That way, you'll have some ammunition for a rapid-fire round of questions next time, so they can't just hit you with an "oh, we should have done this, oops."

shadowmason6 and Angela Wright - Such a wonderful idea for a tea blend! I'll definitely try mixing everything with it; it'll smell lovely too. Thank you!👍

I don't know a thing about patches, so unfortunately, all I can send you is one veeeeery big 🙂

Nancy Hernandez43 said:Every road leads to disaster if you aren't careful, so if there is any way to avoid it, just don't throw yourself into the abyss. First off, tears won't help. You can try to hide them all you want, but people will see it on your face. Worse yet, your dad will feel it too. For a patient, having a stable psyche and maintaining a positive outlook on everything they're going through is absolutely vital. Your sadness could easily become his restlessness.

I can only imagine how agonizing it feels waiting for those test results, but time moves fast. Before you know it, May 21st will be here.

My mother went in seven days ago to schedule her tumor markers and a CT scan, and they told her, "Oh, ma'am, we can't get you scheduled until May 5th." She just gave them a heroic smile and replied, "Ah, right, well at least I can be scheduled a week later than that!" It’s always some kind of waiting, some kind of anticipation, or prepping for new labs. Unfortunately, that's just life when you're living with someone fighting cancer. You have to accept the circumstances, even though it's incredibly hard. Hang in there!

Thank you! 😘I'm doing better today... I pulled myself together a bit. Yesterday, I couldn't stop crying all day long—I was actually feeling quite proud of myself because I wasn't crying in front of Dad, but then I looked in the mirror outside today 😲. He definitely noticed I was falling apart.😢 I think that depressing rain destroyed me, too...
Honestly, it always breaks me whenever I start surfing online and see how many people are battling cancer...

gentletiger46 said:brisksurfer - I carry this notebook everywhere I go. I write down absolutely everything people tell me, plus every useful scrap of info I find on forums or the web. My doctor actually laughs at me, but honestly, he nearly loses his composure when I start grilling him with my list of questions. It’s how I make sure I don't miss a single thing; I sit down at home when I'm calm and write all my questions out. Why am I telling you this? Because we all know what the healthcare system is like—completely overwhelmed and totally dehumanized. That's why I live by the rule: "Help yourself first, then the doctor will help you." I ask twice, I double-check everything, and yes, I am annoying. So, do yourself a favor: write down exactly what they told you needed to be done immediately. Use it as ammunition for a rapid-fire round of questions next time so they can't pull that "Oh, oops, we should have done this sooner" routine on you again.

Haha, that image of you blitzing doctors with questions really cracked me up! 😁
The notebook idea is brilliant, though. Thanks for the tip—I'm going to start documenting everything that happens from now on! 🙂
Thanks! 😘

I wanted to ask if anyone knows—can you go to a private specialist for lung cancer here in the States, maybe in DC or somewhere nearby, who could just review all the scans and run whatever tests are needed? I honestly don't have the patience to deal with our hospital system. It’s been six months since that first shadow was spotted on the lungs, and we're still waiting on the actual testing. I'd much rather just pay out of pocket than sit around terrified that they'll "forget" to run another test again.

brisksurfer said:Thank you! 😘 I’m feeling a bit better today... I managed to pull myself together somewhat. Yesterday, I couldn't stop crying all day—I was still trying to maintain my pride by not breaking down in front of Dad, but when I caught a glimpse of myself in the mirror earlier 😲... He definitely noticed I wasn't myself.😢 Though, I suspect that depressing rain didn't help matters either...
In truth, it always gets to me whenever I start browsing online and see how many people are fighting cancer...

I am walking through those exact same things—the same grief, the same despair, the same restlessness. There was a day when I felt completely leveled, partly because of the weather and partly because of a radio program I heard. It seems I have this stretch of decent days, only for one single day to arrive where everything just falls apart. So, don't mention it; unfortunately, we are in the same boat, and one simply has to endure it.

Regarding the waiting periods and the doctors—even out here, the wait times are much like they are back home; it isn't exactly fast, though perhaps marginally more efficient. My specialists are located in Avian, which isn't exactly a short drive from Washington, D.C. (230 miles), but so far, every cent and every mile driven has been worth it.

I truly hope you find a way to expedite everything! Hang in there! 👍

casualrider21 said:The day before yesterday, I applied my dad's first Duragesic patch (25 mg/h).
We were both just waiting for it to kick in because the pain was absolutely brutal.
And then, those famous 24 hours pass while we wait for the relief to start...
But when it came time to change it, we realized the patch had completely peeled off.😠
Remove that, put a fresh one on. 🤷

We're giving him Tramal tablets and injections until things stabilize.

I need some information—what can and cannot be combined with these patches?

My husband is currently hospitalized. He left home using Duragesic 25, but today they switched him up to the 50 mg dose. On top of that, they have him on: Lidocaine injections (subcutaneous), Zaldiar tablets, Normabel tablets, and his chart lists Tramal injections via p.p.—so now I'm wondering if this whole combination is actually safe or not 😕, but he’s losing his mind from the pain without them (he has a lung abscess resulting from tumor tissue necrosis, which unfortunately wasn't caught immediately; antibiotic therapy started late, though we're hoping it finally works—they originally told us it was a terminal situation). I feel absolutely, devastatingly terrible—but who am I to complain when he's going through something so much worse? I don't know what to do, how to process this, or how to handle the constant ringing of the phone and the mindless comments and questions from neighbors. Honestly, I'd give anything just to sneak into the hospital, lie down next to him, and watch over him...

Just checking in here... my mom is finishing up her third round of chemotherapy (they only called her from the hospital in Rijeka a few days ago)
General status: she’s feeling weak and exhausted—nauseous, but hasn't actually thrown up—and while food sounds unappealing, she’s still eating everything.
She’s been leaning toward heavy, calorie-dense stuff... old-school comfort foods, stews, lamb... says it actually sits well with her. 🤷

As for the bloodwork—her white cell count has dipped slightly (though the doctor says that's normal), and she has hyperthyroidism—but that's from her heart medication, not the chemo.

The doctor puts it this way: first, she’s handling the treatment itself quite well; second, we wait to see how much the chemo actually impacts the disease once it's done. Let's hope it stops the cancer and gives her more time.

Anyway... hang in there, everyone...

Sending you all so much strength as you fight this. 🙂

Susan Ruiz76 said:My husband is in the hospital right now. He left the house on a Duragesica 25 patch, but today they upgraded him to a 50. On top of that, they’re hitting him with subcutaneous Lidocaine injections, Zaldiar tablets, Normabel tablets, and the chart even lists Tramal injections—so I’m sitting here wondering if this cocktail is actually safe or just overkill 😕, ...

The 25 mg patch didn't do squat for Dad. 🤷
He’s also on regular doses of Tramal 50 mg capsules three times a day. But honestly, unless they give him those Tramal shots, the pain just won't quit.
We’re putting the 50 mg patch on him tonight. Fingers crossed it actually does something.😕

I feel absolutely, incredibly terrible—but who am I to complain when he’s going through something so much worse?

Look, you have every single right to feel like crap. How else are you supposed to feel? You can choose to hide it or let it out, but it's part of you. It's what's in your soul, and feeling this way is completely normal and expected given everything happening.

Anyway, hang in there. Keep your chin up and just believe that things will turn around and better days are coming.😘

brisksurfer said:Unfortunately, I got my hopes up way too early! 😢
Another medical screw-up... basically, my dad went in for a follow-up CT last week, and it didn't just confirm the lung cancer—it showed the tumor grew from 2.5cm to 5cm. His bronchi seem okay now, probably thanks to the antibiotics. He went back to Jordanovac today and the doctor told him he couldn't understand why they only did a bronchoscopy last time when that isn't enough (they really should have done some kind of biopsy). He has to wait until May 21st for the next round of tests, at which point they'll admit him to the hospital. That means it’s been 6 months since they first noticed changes in his lungs...
I don't know what to do... this has completely sent me into a spiral of despair. 🙂

Meanwhile, when they treated my mother, they did both a bronchoscopy and a biopsy of the primary tumor, plus a lymph node biopsy in her neck.
It happens quite often—when you biopsy a primary tumor, air can get into the lungs. That’s exactly what happened to her... she had to wear a chest tube for five days so they could vacuum the air out.

Long story short, they really put her through the wringer at Rijeka Hospital.

When we finally went to a private clinic outside of America, the doctor's first comment was... "They put your mother through unnecessary procedures." You need to check the lymph nodes in the neck and chest first—biopsying a lymph node is often enough to get those cancer cells.

If you have a doctor you actually trust (and won't take offense), suggest this to them... tell them not to put your father through invasive tests that aren't strictly necessary. Those delays can end up pushing back chemotherapy, and everything could have been diagnosed much more simply.🙂

Hey everyone! My mom just had her left breast removed due to cancer. Can anyone tell me how things work with Medicare now if she decides she wants to get an implant—does insurance cover any part of it, or is she looking at paying for everything out of pocket? Also, do women who have dealt with breast cancer have any right to disability benefits?

Drew Flores13 said:Hey everyone! My mom just had her left breast removed due to cancer. Can anyone tell me how things work with Medicare now if she decides she wants an implant? Does insurance cover part of it, or does she have to foot the whole bill herself? Also, do women diagnosed with breast cancer have any rights regarding disability benefits?

Check out this link for the "All for Her" Association; they’ll give you a concrete breakdown of everything. You can also find contact info right there on the site.

Susan Diaz91 said:When we finally walked into a private clinic outside of America, the doctor’s first observation was... they put your mother through all that unnecessary suffering... he said you really have to check for swollen lymph nodes in the neck or chest first, because a simple biopsy of a node can reveal those cancer cells immediately.

With my father, it seems they’ve poked and prodded at everything—biopsying lymph nodes, removing growths, running PET/CT scans, bronchoscopies, you name it—and yet, they still haven't been able to locate the primary tumor. They've only found the metastases.
He's starting some general chemotherapy now, and we can only pray it actually helps.
Sometimes, unfortunately, establishing an accurate diagnosis isn't quite that straightforward, is it?

casualrider21 said:The 25 mg patch hasn't done much for Dad. 🤷
On top of that, he’s on a regular regimen of Tramal 50 mg capsules three times a day. However, without the Tramal injections, the pain just won't let up.
We're applying the 50 mg patch tonight. I'm hoping it actually makes a difference.😕

Of course you have every right to feel terrible. How could you not? You can choose to show it or hide it, but it's part of who you are right now—it's deep in your soul, and it's completely normal, even expected, given everything going on.

Regardless, hang in there. Keep your chin up, and try to believe that positive results and better days are coming.😘

Thank you,🙏
to this forum and for the declarative support—it's been "all for one and one for all." You were the only person to react to my desperate post in three days and offer me any real support. casualrider21, I wish the best for you, for your father, and for everyone else fighting these battles. All the best.
As for the rest, goodbye. When you need someone to point you toward something useful, or when you have to spend all day on this Forum arguing about potential alternatives, everyone shows up. But when a real, concrete, human problem arises? No one is here.

So, goodbye to this entire Forum, tonight, while yet another person—among so many others—is fighting just to take their next breath.