goldenraven9 said:You can't look at it through that lens. Every individual’s struggle is their own unique mountain to climb. Some people manage to maintain a positive outlook even while undergoing chemotherapy, whereas others might spiral into total despair just because of a bad breakup. There are moments when I honestly feel like I would rather be facing a cancer diagnosis than dealing with the sheer onslaught of mental health struggles I've been dealt. At least with a physical illness, there is often a tangible hope for a cure. I am not suggesting one is objectively better or worse than the other; you simply cannot—and perhaps should not—compare such fundamental human experiences. I truly hope that Karamel, myself, and everyone else involved will pull through this, so that one day we can all sit back, much like you, and find genuine joy in every single ray of sunshine.
Just to be clear, the topic here is about people who complain about everything and are never satisfied—not folks dealing with legitimate, real-world issues, including mental health. I wouldn't want any confusion there. I can't help but get the impression that so many people today are just uncharacteristically unhappy. They feel like life hasn't handed them what they wanted or deserved, yet at the exact same time, they seem too lazy to actually step up and change things.
There's always hope for getting better if you're actually putting in the work toward recovery. But if you just sit around moping? Well, you know how that goes. Fingers crossed for everyone!
If you ask me, people who spend all their time whining are usually just looking for an audience. It feels like they’ve never actually faced a real crisis, so they don't even grasp what genuine hardship looks like. Honestly, once you've navigated through some truly massive disasters, you learn to cherish every single ray of sunshine and soak up every tiny moment of joy. Why? Because you know how fragile it all is. If you want a reality check, just browse the forums for people battling terminal illnesses. You'll see that after the initial shock wears off, those individuals find reasons to be optimistic in even the smallest things. I say this from experience—after dealing with everything our healthcare system threw at me during my chemo treatments, I realize I didn't have any "real" problems before that. Now that I'm healthy again and my appetite is back, I find I have absolutely nothing to complain about. In a strange, twisted way, cancer actually left me with some positive takeaways. 🙂
Nancy Hernandez43 said:Unfortunately, I don't have much internet access right now, and I haven't been able to dedicate enough time to this—which is a deeply personal issue for me. I missed the broadcast, sadly.
I can only say that I am utterly bitter regarding our healthcare system; it feels like everything they do comes at the expense of those who actually need it most.
My mother scheduled an appointment at the Mayo Clinic two months in advance. Then, on Friday evening, right before her Monday PET/CT scan, the clinic called just to see if we were still planning to come given the terrible road conditions. Of course, we made the trip, but we were absolutely appalled and ended up turning right back around. All that 177 miles on ice and snow just to hear, "We're sorry, but we don't have the isotope liquid ready for the scan." Thank goodness they called us Friday night instead of waiting until Monday at 10 in the morning to tell us they couldn't perform the scan.😕
Why am I even writing this? Because this sense of helplessness is just heartbreaking... yet, I find myself not reacting outwardly because I don't want to upset my mother any further (I try to shield her from every little thought or involvement since I see how hard this is taking her).
The scan finally happened a week later than planned, and one might think, "Oh well, at least it's done." But no. We put my poor mother, who has been fighting for three years, through that extra exhausting travel for nothing. There was no happy ending. Despite the specialist's opinion that it’s just another buildup of fat, her oncologists suspect a mistake was made and fear there are new malignant cells. Why is it that abroad, they immediately raise suspicion and move toward radical procedures, while here, people just shrug their shoulders and wait until things become catastrophic? How many people would actually have to speak up publicly to change this? People will protest for days like a "brick wall" over something like Flower Alley, but if you asked those same people if they'd tackle a burning issue like this, I doubt they’d join in...
Nancy — but why didn't you at least write this in the clinic's feedback book? Why am I the ONLY one who has ever left a negative review in that book? (I was there on February 16th and I am STILL the only one). It shouldn't be that hard. And why aren't you alerting your oncologist about this? I was at my hematologist yesterday, and she actually called Serena Williams to lodge a complaint because something wasn't adding up with the PET-CT ordering process. I jumped in immediately and told her I had the exact same experience. PLEASE, tell your oncologist or hematologist. Things cannot change if everyone stays silent about these problems. You can always send me a private message—I went through the same thing, driving all the way from San Francisco only for it to be a total waste. Let's organize ourselves for a new day and give a statement to the press about this. NO MORE SILENCE. You don't even have to go public with your name. I'll use mine. But there has to be more of us.
I haven't posted here in quite a while. Honestly, the general vibe of this forum just hasn't been sitting right with me lately, and between everything else going on, I simply haven't had the bandwidth to be active on many message boards. Still, looking back, I remember being so deeply involved in this specific thread during the early days of my own fight. Because of that connection, I felt it was only right to come back and finally wrap up my story here.
Back in April of this year, I was diagnosed with Hodgkin's lymphoma. It happened almost entirely by accident, which is funny because, honestly, I’d been suspicious for years. Still, getting that official word? It was a massive shock to the system. I’ve pushed through six cycles of ABVD chemotherapy—so twelve rounds in total. And don't even get me started on those nasty biopsies. Though, looking back, I guess they have their uses today since they're great at predicting exactly how old I feel! I'm only 28, yet somehow I've developed the joints of a complete old lady. Haha. Most of my hair fell out—the stuff on my head, anyway. My leg hair was stubbornly resilient, of course. Just my luck, right? My veins in my arms have turned into hard little wires, too. Then there was the constant vomiting and endless fungal infections... honestly, my medicine cabinet looks like a local pharmacy at this point. I suppose I don't really need to list everything else, do I? I think everyone here knows all too well what the side effects of cancer and treatment actually feel like.
So, I just had my latest PET scan, and guess what? Not a single malignant spot in sight. For my doctors, that’s pretty much the end of the story. Now, they aren't exactly handing me a certificate saying I'm officially cured—because we all know you have to wait a certain amount of time to be sure about those things—but the treatment phase is over. No more scheduled therapies, no more radiation referrals, and honestly, looking at the statistics, I feel like the odds are finally on my side. My next scan isn't for another three months, which means I am finally, mercifully, free from the constant needle pricks, the mouth fungus from the meds, and that lingering anxiety of wondering when they’re going to try to find a vein for an infusion once my veins have completely given out. It feels good to breathe again, doesn't it?
I really want to emphasize one thing here: if I’m cured—or rather, if the disease just isn't there anymore, if you prefer to put it that way—it is solely and exclusively thanks to modern medicine. I didn't touch a single alternative remedy. Not one. Now, I did try to eat healthily, but I also made sure to listen to my body. You know how it is? There were times after chemo when I had an intense craving for red meat, and honestly, I just ate it whenever the mood struck. No strict restrictions for me. I never drank any of those noni juices, nor did I go chasing after some herbalist's "miracle" tonic. Instead, I focused on boosting my immunity through actual nutrition—lots of berries and beta-D-glucan. And throughout my entire treatment, I kept working full-time. I work at a public institution, so I was around people all day long. Yet, I never caught a single infection. Was it luck? Maybe. But I took simple precautions—staying away from sick people and washing/disinfecting my hands constantly. It really was that straightforward.
I really tried my best to just live like a normal, healthy person—you know? I’d go to concerts (mostly the outdoor ones, though I tended to stay a bit on the sidelines) and, aside from those specific days when chemo hit, I made a conscious effort to keep my mind occupied with anything else besides the illness. In my case, that was honestly such a smart move. It’s been about a month and a half since my last treatment session, and even though I wouldn't wish those past few months on anyone, I can't say I'm left with any heavy trauma. I can talk about my diagnosis quite normally now; in fact, just this past week, I was actually working on a little experiment involving certain types of tumors (even if that's not exactly my field of expertise), and I didn't feel any stress at all. During chemo, certain smells would drive me crazy because they reminded me so much of the treatment, but I'm starting to notice that those triggers are fading too. Of course, this kind of mindset won't work for everyone, but for me, staying busy with work was a lifesaver. I simply didn't have the time to obsess over being sick. If I had just stayed cooped up at home, I probably wouldn't have been able to shake that urge to fixate on the disease. Wouldn't you agree?
I’ve encountered all kinds of doctors—some were brutal and totally cold, while others were absolutely wonderful. But you know what they all had in common? They were completely overworked and just utterly demoralized by the state of the healthcare system. In most cases, I ended up having to figure everything out on my own. Luckily, since I work in a similar field, I knew what to look for, but even then, I often had to ask three different times just to get a straight answer. Thankfully, patient associations and forums like the one at HULL exist. It was through those communities that I gathered a mountain of information, which helped me avoid almost all the side effects—or at least, it allowed me to recognize them early enough to manage them. If I could offer one piece of advice to patients and their families, it would be this: try your absolute hardest to educate yourselves about your illness and its potential side effects so you can react in time. Also, don't let your doctor dismiss you. By law, they are required to explain everything regarding your condition and treatment in a way that you can actually understand. At the same time, please be careful about what you read and whose advice you follow. It sounds easy to say "use your head," but when someone is sick, it's incredibly hard to stay rational. Information is everywhere these days, and it's becoming nearly impossible to tell what’s true and what isn't. Not to mention the growing number of unscrupulous people who make a fortune off those suffering from the most difficult illnesses. Since I am a scientist, I stuck strictly to things that had been proven effective through controlled trials multiple times and subsequently published in peer-reviewed journals. What you choose to follow is entirely up to you, of course, but please don't fall for anyone's "miracle cures." There's no such thing. If there were, this thread—and all the others like it—wouldn't be nearly as long as it is.
I started working out again this week, really pushing myself to get back to that shape I had before getting sick. I’ve actually stopped wearing my headscarf, too—my hair is finally starting to grow back (though if you ask me, it isn't happening nearly fast enough!!!). Even my period has returned. Some people might say things are finally returning to normal, but honestly, I’ve just been making sure my "normal" stays steady without any sudden jumps. Anyway, that's all from me. Maybe some of this might be helpful to someone else? Besides, I really wanted to use this post to break up the constant stream of bad news in this thread. Good luck to everyone!
Angela Wright said:Well, it’s not like this Forum or the association website provide any actual value at all, right?😢 If that were actually true, then honestly, what’s even the point? Why would any of us bother spending our time on the association or anything else?😢😢😢
Honestly, if it weren't for this thread and the Hull Forum—which is actually quite interesting in its own way—I wouldn't have learned so many useful things. I'd probably be out there learning everything the hard way, wouldn't I? So far, I haven't dealt with a single mouth ulcer, which is supposedly the most common side effect... and that's entirely thanks to you guys. I'm getting my blood work done today, and I'm expecting great results, also thanks to the advice I found on these forums. THANK YOU, everyone!
Barrett—you’ve asked a very specific question, one that really only someone who has lived through it or works professionally in the field could answer. There aren't many of us here, and even then, we all have such different diagnoses, right? Would you actually know how to give a direct answer regarding tumor lysis syndrome? That’s such a critical issue for lymphoma patients. I suspect you wouldn't, though, because you’re fighting a different kind of evil with its own unique manifestations and hurdles. You don't have the bandwidth or the energy to worry about the specifics of other types of malignancies. Just like > decided, I’ve realized I don't have anything useful to add here since I don't know the first thing about it, nor would I dare offer advice on something where you truly need a doctor's word.
In the end, we’re all fighting our own battles. I have my next round of chemo tomorrow, and honestly? I’m a nervous wreck. I am just so scared. Even after the first round, I felt sick for two whole days, and they tell me it only gets harder with each session. Every single morning when I wake up, I find myself grabbing a strand of hair just to see if it's still there. It sounds silly, doesn't it? I mean, hair loss is probably the last thing I should be obsessing over, but that's just how it is. Sometimes I wish it would just fall out already; the waiting is the absolute worst part. I’m brushing my teeth five times a day, applying Heparin cream ten times a day because I'm terrified of sclerosing, I'm constantly diffusing my rooms with tea tree oil, spraying everything with disinfectant... I’ve practically turned my entire home lab into a masked zone just for me. I’m starting to act a little manic, aren't I? Maybe I should have written something comforting to you, but what comfort can someone else offer when they're also sick? Can I even begin to understand what it's like having a spouse who is ill? We’ve only been married six months; I haven't even had the chance to learn what marriage is like under normal circumstances—between us living apart for work and now this diagnosis. I feel terrible because I really can't offer you any solace, even though I know how awful this is for you. Because in my eyes, as hard as it is for you, you still have what I don't: your health. And here I am, the lucky one, because I got the "best" kind of cancer; they say if you have to choose, you pick the one that hit me. But I have to ask, who would ever choose anything from this? In what kind of devilish choice could this possibly be?
I wonder if it was even smart of me to post this. I don't want anyone's pity, and I certainly don't feel the need to rub my own misery in the face of someone who is also going through hell. I believe you were just having a moment of weakness (how could you not?) and that you don't truly mean what you wrote. But no, > is right—you weren't being fair. Sorry.
FOR EVERYONE ELSE—if you haven't yet, I highly recommend picking up a copy of the Patient Bill of Rights. Honestly, if I’d known about this sooner, maybe my biopsy wouldn't have been quite as traumatic as it was. I haven't written specifically about it before, but in short—the only right they didn't violate was the one regarding post-mortem care, but that was mostly due to technicalities. So much is violated, and things are presented to patients in such an unprofessional way, with this arrogant attitude that makes you believe they are telling you the truth. Maybe it’s a losing battle, but I’m heading to my chemo tomorrow armed with that book just in case anyone needs a refresher (maybe if I run into that... well, let's call her the doctor who performed my biopsy). I’ll have some Post-it notes ready too, because the nurses have been smoking in the patient restroom, and if that happens again tomorrow, I’ll leave a little "thank you" note on the mirror to let them know how much they're "enhancing" an already wonderful experience.
Drew Flores13—good luck. Please let us know how you're doing and share any news, good or bad (though I'm crossing my fingers for the good stuff). 🙂
I'm afraid I don't have the answer to your question, so I'll just give you a massive 🙂.
As far as my limited knowledge of ascites goes—and believe me, it’s pretty minimal—I don't think it's all that connected to the IV fluids. Isn't it more likely a byproduct of liver cirrhosis or perhaps some kind of abdominal tumor?
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 🙂
My current obsession? Preventing infection. I was reading online that washing your hands is basically the alpha and omega of staying healthy. So, I picked up this antiseptic spray for those times when I can't get to a sink—they make these tiny ones that fit into any purse, and mine is even safe for wounds (it doesn't sting). It's called Octenisept and it costs $10. It contains phenoxyethanol, which is just your standard bactericide you see in all sorts of Dermatologica products. Anyway, maybe someone out there finds this little tip useful. 👍
Oh boy. So, I dealt with a pinched nerve in my neck once, and I ended up seeing Dr. Bućan—he’s a physiatrist—over at the Mayo Clinic, which is located right by Madison Square Garden in Washington, D.C. Honestly? They were just so incredibly kind and professional, and they actually got me feeling better in record time. They specialize in things like massage therapy, manual manipulations, and specific exercises. I’m really not entirely sure if they handle this exact type of issue, but hey, why not give them a call and find out?
I haven't a clue, really, but if I were in your shoes, I’d probably start by making an appointment with a primary care physician. Have you tried doing a little bit of digging on Google about the issue yet?
Personally, despite my name, I’m not really looking for a debate—but I truly cannot stomach people who profit from those facing the toughest illnesses. They sell smoke and mirrors using the exact same old tactics: half-truths and twisted data designed to sound authoritative, yet they have absolutely nothing to say when faced with actual questions or logic. If my sharp tone hurt anyone's feelings, I'm sorry, but I honestly view those kinds of people as being just as criminal as murderers. Anyway, enough of that.
Here is a little bit of good news from my side—it's been a week since my first round of chemo (I'm dealing with Hodgkin lymphoma) and I feel fantastic. No mouth sores, my hair is still intact, I'm working, and I'm barely even thinking about the illness. In fact, that intense pain in my breastbone that's been haunting me for the last few weeks—caused by that massive growth in my mediastinum—has almost completely vanished! Maybe the tumor is shrinking and suffering? I hope it's squirming and screaming in pain; I actually enjoy imagining it as some sort of giant rotisserie chicken on the chemotherapy fire.
I've been tracking my veins with Heparin cream in hopes of preventing them from hardening up. I'm taking beta-glucans and various vitamins, eating healthy (lots of fish rich in omega-3s, veggies, fruit, pineapple...), and all that. I picked up this lovely green and white tea from a Green tea house (a little shop in Washington, D.C., near the Hunting horn) that smells wonderful and even has bits of real fruit in it. My mom tells me they also have mint—which helped my nausea immensely—and ginger. I'll try them next week during my treatment and let you all know how it goes.
holloweagle6—Oh, that's great, they seem quite proactive. Take your mom and yourself for a nice stroll along the coast, then grab some ice cream on the boardwalk so you can both forget about all this for a while. But do try to convince your mom to go private if the wait for surgery is too long (though, I don't quite get what there is to wait for here; it isn't like it's major surgery under general anesthesia, most things are outpatient—my husband had two large moles removed all at once in just thirty minutes!). Melanomas move incredibly fast and aggressively, so any delay is dangerous. It's much better to be overly cautious and hurry rather than waiting around.
Drew Allen said:Just imagine you’re an oncologist. You’ve finished medical school, spent years studying how to fight cancer, and you work at a major research hospital where you administer chemotherapy and radiation. Now, let's say you personally know several people—people you actually trust—who claim they cured cancer using some herbal tea recommended by someone who barely finished middle school. In this scenario, there isn't even a doubt; it's clearly happening. If a patient with cancer came to you, would you walk away from chemotherapy and radiation just because your own trusted sources suggested a different way? Would you tell your own patient that this alternative method is actually much better and safer for them, OR would you stick to the chemo? Just try putting yourself in their shoes—the doctor's shoes—and it becomes very clear why they speak the way they do. I think it's pretty obvious to everyone what chemotherapy does and what its side effects are, just as it's obvious to everyone what herbs and natural remedies are. Resentment is such a nasty thing. As a doctor myself, I could never dream of letting someone without even a high school diploma treat cancer patients, especially when I've spent twenty years in training. I certainly wouldn't permit myself to send my own patient to someone like that. Answer my previous question if you actually have a stance on it.
As someone who spent a long time in school and now spends twelve hours a day working in a biomedical research lab (not focused on tumors, but definitely in the biomedical field) for a salary that's honestly below the US average, I find this incredibly insulting. Every scientist—and every decent physician—bases their treatment conclusions on reproducible experiments that have been vetted by their peers. All documentation regarding any drug or experiment is PUBLIC. Unlike a herbalist, there aren't secret ingredients or mysterious patients that you can never track down. Of course, doctors vary—some are better, some are worse, some are more easily swayed... but the vital point is that in evidence-based medicine, you have the entire establishment standing behind you, ensuring that what you receive has been tested countless times and represents the absolute best that human knowledge currently has to offer. How can you even compare that to some local folk healer?
Furthermore, I’d suggest picking up a textbook and learning the basics of biology. You might realize that cancer isn't just one single disease, but a massive, heterogeneous group of various disorders. Because of that, there will NEVER be one single "magic bullet" cure for everything. It’s like asking for one pill that cures a cough, varicose veins, and a hernia all at once! Also, you might stumble upon data regarding certain types of malignancies that are actually quite curable today with modern treatments—take testicular cancer or Hodgkin lymphoma, for example. Naturally, we want therapies to be less toxic, and work is constantly being done to make that happen.
Also, I am quite fed up with the blanket excuse of "every organism is different," which seems to be used as a catch-all justification for everything. Well, it isn't—we are all made of the same molecules and subject to the same laws of physics. Sure, there are differences to a certain extent; some people might handle chemo better than others, or react differently, but that's mostly due to our still-limited understanding of cross-reactivity between drugs, genetic influences, and so on.
Drew Allen said:Nancy Hernandez43, Amanda Grant56 mentioned how doctors didn't have solutions for the people she brought up, even after they went through numerous therapies prescribed by them. What does that tell you? That they aren't all-knowing, and even when they say they can't help, there's always enough time left to try something else. There’s really nothing to lose if they've already said "it can't be done."
Why do all the alternative medicine folks cling to this argument so stubbornly, when the exact same logic—perhaps even more so—applies to their herbal remedies? In fact, there are far fewer documented cases of people being cured *only* by alternative methods compared to those who have beaten cancer. What do you actually lose by trying an alternative? A bit of money and some precious time that you could have spent with your family instead of wandering around some remote herb patch. Time that could have been used engaging with actual science (even if that means botanical research, provided it's done properly) to truly contribute to the fight.
Dear holloweagle6 — first off, maybe take a deep breath and slow down a little. Your GP was way out of line throwing a cancer diagnosis around so casually; you simply cannot diagnose cancer without a proper cytology analysis. Of course, any mole that bleeds is incredibly suspicious, but you did the right thing by checking. If you can, please try to convince your mom to see a specialist as soon as possible, even if it's a private clinic, because with melanoma, every single moment counts. I'm not sure where you're located, but I know there are plenty of great private specialists in Washington, D.C., with top-tier equipment who can tell you immediately if something looks suspicious and can even remove a suspect mole or spot on the spot. I'd be happy to send you the contact info for the Dermatologica specialist my mom and husband used to get their moles removed via PM.
Taylor Morgan4 - oh man. 🙂 A nurse over at the hematology department was just telling me the other day that she finds it easier to cope if she tells herself everything happens for a reason. Honestly, what kind of "reason" could there possibly be for getting a malignant illness? Especially when it involves a child... it's hard to wrap your head around. But hey, like everyone says, those little ones are incredibly resilient. Modern medicine is doing such incredible work with these things nowadays, so you just have to stay brave and keep pushing forward.
ANNOUNCEMENT FOR EVERYONE - in the US, Zofran costs about 35 dollars which is nearly half of what we pay here. 👍
Exactly. You can even ask them to reimburse your travel expenses—that’s what Milinović said, all while he was busy bragging about his absolutely brilliant little reform.
Dear Rachel Cruz9, — swollen lymph nodes are usually just what happens when an infection hits and all the lymphocytes rush in to help out. But, you know, painless swelling can also be a sign of lymphoma, where the cells basically mimic an infection just to stay alive (that’s exactly how my Hodgkin's behaves, for instance). Still, without a puncture or other specific tests, nobody on this forum—or any doctor out there—can give you a definitive diagnosis. My advice? Try not to overthink it too much. If things aren't feeling quite right, maybe just take some Praksiten; otherwise, you'll drive yourself crazy. A puncture, followed by a biopsy if the doctors decide it's necessary, is truly the ONLY way to know for sure what's going on.
mistyridge5 — I'm wishing you so much luck, and thank you for the advice. Honestly, I can't even imagine trying to navigate all of this without the info we find online, especially when our own doctors tend to dole out information in such tiny drops.
Susan Diaz91 — - how absolutely terrifying!
EVERYONE — does anyone know if they use central catheters (like a PICC line) here in the States for administering chemo and drawing blood, instead of getting poked in the veins constantly? Also, what about Nupogen (G-CSF)? Does anyone have experience with it—when did you use it, how was the process, and was it something you requested or something the doctor recommended?
feralridge3—I've got a little bit of good news for you! I stumbled upon this booklet regarding Hodgkin lymphoma published by the British Minister of Health, which outlines the most common side effects from treatment. Here is what it says about radiation therapy:
Hair loss only happens in the specific area being treated. It occurs right where the beams enter and where they exit. So, someone receiving radiotherapy on the chest, for instance, might lose the hair on their chest and perhaps some on their back. This hair loss typically happens quite suddenly after 2–3 weeks. Usually, it is temporary, though it can take anywhere from 6–12 months for it to grow back.
See? Maybe those locks will grow back after all, you just have to be patient!!! 🙂👏
First off, a huge hug and big congratulations to everyone on the holidays! I really hope you all spent them surrounded by your favorite people in a cozy, wonderful atmosphere. I know I did—even if I had a little help from some small doses of Praksiten to get through it. After all, I’ve got a bone biopsy waiting for me this Tuesday... and right on my birthday, no less! Can you believe that?
Drew Allen said:People usually start turning toward "alternative" options only when mainstream medicine basically shrugs its shoulders and tells them, "Look, there's nothing more we can do for you." It’s a desperate moment, isn't it? But the real issue—the real tragedy—started when certain individuals began exploiting that profound human suffering just to pad their own pockets. They see someone's misfortune as a business opportunity. Honestly, those kinds of people need to be held accountable. You just don't forgive that kind of behavior! At the end of the day, does it really matter if it's the "alternative" route that gets you through, or if it's standard chemotherapy? What truly matters is that you actually get better. Isn't the goal just to heal and ensure that you never, ever have to deal with being sick again—not even a common flu, let alone something much more serious? There is just one single enemy we all share here, and that is CANCER. Let's go out there and kill it!!! 🙂 🙂
I couldn't agree more on this! Truly. 👍 There is absolutely nothing more distasteful than profiting from people who are sick and desperate—whether that person is some "alternative" healer or just your typical mainstream doctor (and honestly, there are far too many of those around nowadays). The other day, I was sitting in a waiting room at the hospital, surrounded by so many people looking completely hopeless, and I saw this elderly woman walking from one poor soul to the next, trying to sell magnetic bracelets. It was truly stomach-turning. Truly!
Don’t get me wrong—I’m definitely not saying I'm completely against "natural" remedies. It goes without saying that eating high-quality, diverse, and balanced meals absolutely helps your health; it gives a struggling body the strength it needs to keep fighting. But if I could offer one piece of advice to everyone? Please, try to stick to proven, reliable preparations. It's just better that way. You should really head over to the websites... Have you ever found yourself wandering through the vast digital halls of the National Institutes of Health? It’s quite a journey, isn't it? I was just browsing through their database—the Entrez system—and it really makes you wonder about the sheer scale of information we have at our fingertips today. Is it overwhelming? Perhaps. But there is something strangely calming about the order of it all, don't you think? Just endless layers of data waiting to be uncovered. What’s really the most widely used—or maybe even the absolute best—search engine for scientific papers? I mean, we're talking about high-quality research published in peer-reviewed journals, right? You know, the kind that actually passes the scrutiny of the scientific community, where results are reproducible, and all that good stuff... it’s essential when you're trying to test how effective a potential supplement might actually be. Anyway, my husband and I were digging through some studies recently, and we stumbled upon this one piece of research that showed... Pineapple? Is that all? Just a single word floating there in the void? It makes me wonder... what's the story behind it? Are we talking about the tropical sweetness of a perfectly ripe fruit, or perhaps some deep, philosophical connection to something much larger? Sometimes, even the simplest things can trigger a million wandering thoughts. Does anyone else find themselves staring at a simple concept like that and just... drifting? Or am I the only one who does this? It turns out there’s some pretty significant impact on tumor growth here (check out this study if you're interested: http://www.ncbi.nlm.nih.gov.gov/pubmed/17893836). To put it simply, mice suffering from various types of cancer who ate plenty of pineapple had a 300% better survival rate than those who didn't. So, maybe it's time for a mad dash to the pharmacy—or just the grocery store—to stock up on pineapple? Plus, it's packed with fiber, so it might even help with constipation. Isn't that interesting?
You can also find some truly excellent articles out there regarding how beta-glucans actually work. It’s quite clear that there are plenty of plants and supplements available that can really help you out; you just have to know exactly where to look for the high-quality info. Does anyone else find navigating all that data a bit overwhelming? If you're having a hard time digging through the research papers or just can't seem to track down a specific study, please feel free to reach out to me. As a scientist, I have access to a vast amount of these journals, and I would be more than happy to help you make sense of what's written in them.
Regarding Milinović, I’ll just say this... 🤮What an absolute brute and a disgrace—bragging about "reforms" and "savings" that were actually just stripped away from the most vulnerable people? It’s sickening. Now he’s actually forcing truly sick individuals back into the workforce. As if we wouldn't be out there working every single day if we actually had the strength to do so? Honestly, where is the humanity in that?🙂
In the end, I really have to say, I’m feeling pretty let down by my doctors. My first round of chemotherapy is coming up next week—they haven't quite decided if it'll be Wednesday or Thursday yet—but NOBODY has actually sat down with me to have a real conversation about what to expect or how to get ready. If it weren't for this forum, would I even know about Zofran, or the possibility of getting mouth sores, or using glucans to help boost my immunity? Heck, if I hadn't gone looking, would I have even known you can request anesthesia during a bone biopsy? From what I've gathered, most poor souls are forced to endure that nightmare wide awake! Well, I'm certainly not sitting on that table until I pass out from the meds or try to bolt out of the hospital; one live biopsy was more than enough for me, thank you very much. Maybe we should start a thread for tips, tricks, and support on how to survive chemo?
Thanks everyone for all the replies. So, I went ahead and chopped my hair down to an inch and dyed it neon orange—I mean, what does it matter? It’s all going to fall out anyway. Honestly, I love it; everyone keeps telling me how great it looks. 😁 I’ve already spotted some really cute wigs I want to check out once these holidays pass—and I've basically decided to just seize the moment and try colors and styles I’d never have dared to touch before. If I'm stuck dealing with this stupid cancer, I might as well go wild while nobody can tell me otherwise, ha!
Kenneth Wright3—just stay close to your mom. Talk to her about the good stuff, things that aren't related to the cancer, what you're doing, or what you're planning. Tell her about future plans where you see her included and things like that. Personally, I've had enough talk about this cancer crap just since being diagnosed; I can only imagine what it's like for people who have been in this fight much longer.
As for alternative medicine, I am strictly against it. Most people involved in that field don't have the slightest clue about basic biological or chemical processes. Very few, if any, of those remedies have ever passed a quality double-blind clinical study (homeopathy, in particular, takes the lead there). In fact, some homeopaths actually claim they don't even want to do double-blind trials anymore because they never get a positive result!!! If ancient medicine were more successful than evidence-based medicine, the human lifespan wouldn't be increasing thanks to modern medical advancements. Back when herbalists, homeopaths, and shamans were running the show, the average life expectancy was only 40 years. Just look at the human population growth curve. It is certain that there are herbs with beneficial ingredients. It's certainly true that drinking green tea won't hurt you, and it can have many healthy effects. But what is also absolutely certain is that the amount of active substances in plant-based preparations varies wildly from one sample to the next, and these products are poorly regulated. To put it simply, you could easily end up buying flavored water with barely any active ingredients in it.
My cousin passed away from Hodgkin twenty years ago, despite every possible remedy from both alternative and modern medicine. Today, I have the same disease, and even if it's in its worst phase, I have an 80% chance of recovery. All thanks to classic, evidence-based medicine. A drug or a remedy either works or it doesn't. And if it works, it very quickly becomes mainstream, making it unnecessary to call it "alternative" anymore. But hey, to each their own! 🙂
So, does everything just fall out? Like, ALL the hair? I mean, eyelashes and eyebrows too? I can't seem to find one consistent answer anywhere—some people say it's just the hair on your head, others say it's everything. It’s not like I’m going to complain if the hair on my legs falls out, but if it all grows back thicker than before, I might just go jump out of a tree at the local zoo... but right now, things feel pretty critical! 🤣
I mean, what do I actually know? I just know it'll grow back eventually, and honestly, that's the least of my worries. It’s not that I’m ashamed of being sick, per se, but I really wouldn't want everyone to know I'm dealing with this. I know people who would secretly celebrate my misfortune, you know? Plus, I work at the Johns Hopkins School of Medicine, and you know how medical professionals are—they pounce the second they hear about a health issue. I’d much rather talk about other things; just because I'm sick doesn't mean I've lost interest in anything else. And besides, I don't want to be constantly reminded of it. Unfortunately, I had this impression that the hair loss happens more gradually. My old boss had breast cancer, and for her, the thinning was quite slow; even after a few months, she wasn't completely bald. So, I was holding onto this hope that I could at least make it through the summer months with some of my hair left. I'm a bit shocked by how fast this is actually happening.
Thank you all so much for the answers and the comfort; you guys are absolute gems.😍 I see that mistyridge5's mom went through this, so I'm curious about that part—I'm really hoping to get back to work as soon as possible. I finally started working in the field I dreamed about during all those years of studying, and I truly love it. I miss my colleagues, my mentor, and even my boss. I realize I won't have the energy for those 12-hour shifts like I used to, but I'm hoping I can manage enough work to slowly chip away at my post-grad exams. Any experiences or advice? Thanks again, everyone.🙂
feralridge3 — that's wonderful news about the chemo, hang in there! Regarding hair after radiation, I think I read somewhere that there's a chance it might not grow back in the radiated areas, BUT please take that with a huge grain of salt. I've been reading so much lately under intense stress that it's very easy for me to misread or misremember things.
biri — walking in nature with my dogs helps me immensely, especially now that the weather is so beautiful and sunny. People are creatures of the light, and sunshine always lifts the mood, especially when you combine it with nature and animals—it's a total win. Maybe consider getting a pet—a little dog, a cat, even a rabbit—if you don't have one already. It's easier to cope when you have someone to care for; it keeps you from feeling so useless. Not to mention how much it enriches your social life! My mom has this whole "dog crew" she meets with, and they spend every day roaming the parks together, just enjoying life. Honestly, my mom's dog friend helped me SO much during my illness; by pure coincidence, she's a nurse at a private clinic that has its own hematologist, so I was able to get a second opinion and a little peace of mind. Besides, it's been proven many times that petting something warm and soft really helps lower stress levels.