Posts by Benjamin Grant6

Angela Wright said:To my dear patients and to those of you acting as pillars of support for your loved ones...

Today at 6 PM in Central Park, we are holding the public presentation of our Association and the official launch of the brochure we’ve written and printed specifically for you. A year ago, we were sitting here merely discussing how things have gone completely sideways, how the system is in total collapse, how we’ve been stripped of our dignity and left drowning in misinformation regarding illnesses; back then, we all agreed that something had to be done. And so, a group of six enthusiasts—altruists, and perhaps a few lunatics—set out to fight against massive windmills equipped with razors, all on your behalf, so that things might improve and so that you receive exactly what any human being deserves when facing such a grueling illness...
Still, I find myself compelled to express a profound sense of disappointment, because most of you have remained strictly within the realm of verbal support and that ubiquitous, hollow "BRAVO." My respect goes to the individuals who actually stepped up and dedicated their precious time, but the majority seem content to simply debate *how* things should be done without ever asking *who* will actually do them. Me? slyseal28? Who else? That isn't how one fights anything, least of all cancer or a decaying system whose stench arrives bundled with a heavy diagnosis...
Do you truly believe you possess certain rights? If so, then please, make your way to Central Park—whether you are physically capable or if you need to send your support through others—to publicly demonstrate those rights. Step forward and declare, loudly and clearly, THAT YOU HAVE A RIGHT TO LIFE, TO HEALTH, AND TO FIGHT FOR YOUR WELL-being UNTIL RECOVERY, and to do so in the best possible manner available today. We live in the 21st century, where many scenarios once relegated to science fiction have become reality; similarly, many devastating diseases are now successfully treated. As human beings, as dignified creatures, you have a right to everything the human mind has achieved and invented, particularly regarding health. Do not strip yourselves of these rights. If you fail to step forward and raise your voices, you are essentially forfeiting a battle you should have stood your ground to win. If you refuse to act, you no longer hold the right to say "something needs to be done." Now that you realize cancer and other severe illnesses aren't happening to "someone else," but to US, you must realize that these problems won't be solved by outsiders, but by YOU...

Do you honestly think this will amount to nothing and that effort is futile?

Well, I assure you, it will lead to something, or at the very least, we shall depart this world with clear consciences, knowing that when someone asks us, "What did you actually do?", we will have an answer. Otherwise, the fact that things are not as they should be will weigh heavily on someone else's soul. Personally, I could not live with that burden...

For those of you whose loved ones lost their battles, much like I have, you carry a moral obligation to speak up in honor of their suffering, so that it might not be repeated...

In that spirit, I appeal to everyone to join us today at Central Park and lend your voice to a better tomorrow for us all...

You wrote that with such beauty and sincerity. I am checking in as one of "those" people who has provided only verbal support, though truthfully, I haven't had the capacity to engage more deeply until now. I am losing sleep due to current obligations—which are increasing by the day—even though it would be more humane and correct to do otherwise...

I stayed in New York City, but I am coming to Central Park to support you. I'll take the opportunity to grab a few copies of the petition for my parents, and then we will send them to you via mail...

As I always write, kudos to the ladies for all the effort, willpower, and energy you pour into this, selflessly dedicating your time for the good of everyone...

See you at Central Park...
Best regards. kisses

mistyfox7 said:It only just occurred to me this evening that there ought to be a dedicated forum for cases such as this... I suppose I should thank IT and the relentless march of technological progress. I am reaching out for assistance because there are simply too many pages to sift through, and I have been surrounded by nothing but sorrow for these past few months... My mother underwent two separate surgeries for bladder cancer. She is currently using those bags we attach to the abdomen, where a catheter leads from one pouch to another, but I find myself wondering if there is some surgical procedure available to create a direct connection from the abdomen to the urinary bag... I realize how incomprehensible this may sound to most, but I trust that those navigating similar circumstances will understand me... Or at least, I hope they do, especially since my mother’s diabetes only serves to complicate the entire situation. Her recent test results are positive, and there are no longer any signs of tumor cells; now that her life is no longer in immediate peril, I find myself contemplating everything that might ease her daily existence... When that first part detaches, she ends up completely soaked because it constantly leaks internally, and the surgical wound is healing so poorly that there is a gap large enough that a kiwi could practically fit inside after two stitches... It is quite inhumane. I thank you in advance for any guidance or help you can provide... I wish everyone the strength required to endure whatever trials have come their way.

You find yourself in a rather unenviable position, caught between being the patient—a mother enduring all of this—and the caregiver watching it unfold... It seems to me that in my own mother's case involving an ovarian tumor, they removed the bladder as well and created a sort of bypass with an "artificial bladder" within the abdominal cavity... Unfortunately, I cannot say for certain, as the surgeon wouldn't allow me to listen to the specifics of what was being operated on or where... At this moment, I am too far away to ask her directly, but I certainly intend to when I return home.

Of course you are considering every possible way to make her life easier and searching for solutions... I truly hope you find them... Hang in there.

Grace Fowler said:Greetings, my dear comrades!!!!
After an exhausting five weeks, I am finally back, though there isn't much to report... I was struck by a minor storm that refused to pass, resulting in a bout of sepsis that doctors simply couldn't identify bacteriologically, which kept me under their thumb for five weeks straight. But I am not one to surrender easily, ha, ha, ha... after quite some time, we finally discovered a purulent abscess near the psoas muscle (that abdominal muscle responsible for my constant cramping), which required surgical intervention, though there was significant indecision regarding the best approach. So, I found myself being shuttled from one hospital to another whenever good news arrived :-) My surgeon eventually opted for follow-up scans first (an abdominal CT), which suggests the collection is shrinking; he decided against immediate cutting because there is a strong possibility it might just resolve on its own. Naturally, I practically "flew" out of there the moment I could... finally, my own bathroom... my own bed... and don't even get me started on the food... :-).
I hope you all are doing well and staying brave... I will try to catch up on the pages I missed tomorrow, as I am feeling a bit weary...
Warm regards from Dina

It brought me immense joy to see your name among the last people to check in! And then, this post! Despite all the setbacks and the decidedly unpleasant stretches spent in various hospitals, you remain our fighter—the very reason we find strength, the one who stands ready for anything!

Now that you are home, now that you are in your own space, you can—and indeed, you must—rest!

Warmest regards; continue to be our light—a brave fighter with a bright spirit!👍

Amy Jones20 said:Greetings to everyone...

As I mentioned in one of my previous posts, my mother is currently battling breast cancer. She has already undergone surgery and completed six rounds of chemotherapy—the most recent session was on August 4th—and she has now transitioned to Herceptin treatments, having just received her second dose today...

Well, here we go again. My mother didn't see her usual doctor today; instead, she was met by someone else entirely. During their conversation, she simply asked—purely for informational purposes, mind you—when she would need to undergo certain follow-up tests regarding her condition. Without even glancing at her medical history, the man immediately started scribbling out a mountain of referrals... But then again, that isn't really the issue...
She managed to get through all those examinations today, and among other findings, they discovered some nodules on her neck and a somewhat scarred, essentially damaged liver... The doctor who performed the exam suggested that this is most likely just a lingering consequence of the chemo, even though she actually finished her last treatment nearly a month and a half ago. Apparently, so many people experience this as a side effect of chemotherapy...

It left me feeling somewhat unsettled, as I couldn't help but sense that things weren't exactly on solid ground... a suspicion that was only reinforced by what she went and ordered again during her ninth month, just to see what was actually happening with that spot on her neck and the situation with her liver...

I find myself wondering if anyone here might possess some insight regarding this matter... specifically, whether it is truly possible that this is a direct consequence of chemotherapy... or, heaven forbid, something else entirely...

I’ve heard that the standard follow-up appointment usually doesn't happen until about a year later... which makes today feel incredibly premature for Mom, so perhaps this is actually the definitive answer... maybe her system just hasn't fully cleared itself out yet. I don't know, I'm merely speculating... and I can only hope for the best...

Any shared experiences would be most welcome...🙂

Greetings...
Unfortunately, I am in no position to comment on how chemotherapy might impact liver function or the detection of specific cell abnormalities... All I can share is that my mother had her first follow-up appointment within thirty days of completing treatment—which is standard procedure, as if any abnormal cells were detected, they would immediately initiate a new cycle without delay. Following that initial checkup, the doctors confirmed there were no remaining cancer cells, so her next scheduled monitoring won't be for another four months... During this first year, she is required to undergo evaluations every four months, after which the frequency should taper off to every six months for a duration of approximately two years...

I certainly hope someone provides you with a more thorough and meaningful response than this, though I suppose any level of screening is beneficial for the body... it ensures nothing is left entirely to chance and allows for the earliest possible detection of malignant cells, assuming there are even any left following the prescribed treatment...

I am hopeful, along with you, that everything will turn out alright... Hang in there...

analogridge17 said:After a long and grueling battle with illness (lung adenocarcinoma), my grandfather Ivo passed away this past Tuesday. If anyone happens to be in need of Traceva 150 mg tablets for treating this condition, I would be willing to sell them at a very reasonable price... Please feel free to reach out via private message if interested.

I am truly sorry things couldn't have turned out differently, my condolences...

cosmicviper76 said:I suppose I agree... medicine has done all the heavy lifting it can, and now the responsibility shifts to us. It is our turn to stand by them, to offer our full support and ensure we don't let their momentum slip...
I had an absolutely miserable night... I spent the entire time crying, unable to find any semblance of calm. In his presence, I maintain this facade of being perfectly fine, acting as though nothing is wrong, but I suppose I’ve just been bottling everything up inside for far too long, and tonight, it finally broke me...
After taking some Normabel, I simply drifted off to sleep...
Things seem to be slightly better today, though the underlying reality remains unchanged: we wake up every single morning to the realization that something is fundamentally wrong...
Pusaaaaaaaaa...

I know exactly what it feels like... that exhausting struggle to maintain a mask of strength, refusing to let anyone see the weight you're actually carrying, only to finally break under the pressure... It’s perfectly natural to feel a bit more relieved today, though; after all, you've finally allowed some of those internal tensions to escape, which is a necessary part of the process...

Every morning, we would wake up—almost everyone at the exact same time—to sit around the table and calmly map out how our day was going to unfold... We made a conscious effort to avoid discussing illness or even acknowledging that another day was slipping past us, knowing full well that tomorrow remains an uncertainty. Just stay brave... kiss

cosmicviper76 said:And maybe wrap your hand in a cold compress... Voltarin ointment works wonders for that...
Pusaaaaaaaa

Everything seems to be fine :-) My fall was quite the cinematic stunt, and the gentleman who witnessed it didn't hesitate for a second before jumping into his car to rush me to the emergency room... 😍 It’s certainly not my first rodeo on a bicycle, so the ladies at the local pharmacy already recognize me... 🤣 I suppose I’ve become one of their most frequent patrons.

I find it quite charming when someone realizes their parents have actually become more childlike than they are... The most endearing little outbursts lately have been things like "And what about me? Do I get a chocolate bar?!" or "I went diving all by myself, look how much I dove," while the absolute worst are those "Eat up, eat up..." cries... that's where I truly lose my patience...🤣

It is genuinely wonderful when a father refers to you as his lawyer; it implies a profound level of trust in your judgment... In our family, it was only my father who would consult with the doctors, occasionally even offering them suggestions... 😁 He even maintained his own private medical log where he recorded and detailed every single minor movement Mother made...

Ultimately, it isn't just about how much physicians and modern medicine can assist us, but rather how much we ourselves can influence those closest to us... kisses

slyseal28 said:Our organization, along with several other American patient advocacy groups, has officially launched a petition demanding access to top-tier treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare. Signing began yesterday at 6:30 PM at our booth during the "Summer evening at Central Park" fashion and music festival. We will continue today starting at 6:00 PM, and from Thursday, July 17th through Saturday, July 19th, we will be stationed at the music pavilion in Central Park from 6:00 PM onwards.

For those unable to make it down to Washington, D.C., we can send you the petition form via email so you may distribute it to others... once signed, the forms can be mailed back to the association's address.

Let us attempt to harness the collective power of the internet...

I will certainly make it out to sign the petition this Thursday...

cosmicviper76 said:I hope you're taking something for that arm; maybe some coffee would help...
How is your mother doing?

I appreciate the concern, though I'm not taking anything specifically for my arm. It’s been twenty days now, and the pain only really flares up when I put too much weight on it, like when I lean against it🤣.

My mother is doing okay. She is truly living proof that one shouldn't take medical prognoses as gospel. Physically, she looks quite healthy from the outside, but mentally, she is still struggling deeply... She often seems lost in her own thoughts; despite being naturally stubborn, she has become almost childlike lately. She’ll wander into my room just to ask, "Can I go out without my hair? What will people think?" Her hair has fully grown back after chemo, and she’s even had it trimmed twice, yet it seems she still sees that exhausted version of herself staring back from the mirror. Thank you for asking, but I believe things are moving in the right direction, and hopefully, by her next check-up on October 16th, she will be feeling even better.

Is your father's arm feeling any better?

Stay strong and keep your chin up...

cosmicviper76 said:Good evening. Thank you for responding... we were at the General Hospital today, and they told us it’s most likely a nerve issue, so now we are just holding onto the hope that all is not lost...
we keep moving forward!

I assumed it was a nerve problem because about twenty days ago I had a bicycle accident where I injured a nerve during the fall, and my arm still aches and feels numb, with the pain radiating down the entire length of the limb.

That is exactly right—we move forward, with the same strength and resolve... hope is there to guide us through it all... hang in there.

shadowmason6 As stated by:
My mother completed her first round of chemotherapy on June 27th... she is following the Mayo Clinic protocol, which consists of six cycles in total. Her next session is scheduled to begin on July 28th. Her oncologist decided to grant her an extra week of recovery time after this initial round, as she wasn't quite sure how my mother would react to the treatment... normally, the regimen follows a 1+3 schedule...
I didn't quite have the courage to post anything until now. Once her cycle finished, I found myself waiting in suspense, wondering exactly how her body would react... I suppose we can be satisfied with the outcome (though, of course, a reaction isn't necessarily a reflection of the therapy's actual efficacy). She didn't experience any nausea, just some loose stools—actually, it was quite a bout of diarrhea—on the first day of receiving the treatment. Her hair hasn't fallen out yet (though, for the time being, I am still remaining cautious)... 🙂)
Three days after her cycle ended, some sores started appearing on her lower lip—despite her being incredibly diligent about brushing and rinsing with chamomile and sage... Fortunately, they didn't migrate deeper into her mouth, and they seem to be receding already. She’s been applying Gelclair and an alcohol-free propolis, which is basically her go-to remedy for everything, even if no one actually suggested it for this specific situation... 🙂)

We might be able to call this a success if the therapy wraps up with nothing more than these side effects... though I find myself feeling rather skeptical... There are whispers that the body begins to wear significantly thin after the third cycle? While I realize everything is highly subjective, I would be truly grateful if someone could share their own experiences...

Absolutely screwed... Has she been silent lately...? Does anyone have any word on how she’s holding up? I'm keeping my fingers crossed... I really hope she made it through her final round of chemotherapy...

It appears that your mother is handling the treatment quite well... In our case, her hair began to thin significantly before the second round of chemo, and by the time she finished that second session, much of it had already fallen out. Regarding that general sense of physical exhaustion, she only started feeling it once the second round was complete. I’ll admit, I was terrified about whether she would be able to endure the whole process or not, especially after reading so many posts where people claim everything takes a turn for the worse after the third round... but, as you have already realized, everyone reacts to this in their own highly individual way... and I suppose you will eventually find out exactly how she responds...

To be honest, my mother never actually dealt with any nausea, which was perhaps the most unsettling part for all of us... we were constantly on edge because she was undergoing chemo during the summer months, and the endless travel required made everything feel so much more precarious... 311 miles Those hospital trips in a car without air conditioning... she never once mentioned feeling weak. Honestly, you could just see it on her face when things were taking a turn for the worse—that sudden, telltale flushing would appear, and that was my cue to insist she lie down and get some rest... As for her bowel movements, we are still dealing with her constipation to this very day. She never had any diarrhea.

Propolis really is such a versatile remedy for so many different things, and honestly, I’m just glad to hear that it actually worked for you...

She hasn't checked in for quite some time...😢 I truly hope everything turns out to be alright...

Hang in there, everyone... stay strong in the fight...

Linda Wright5 said:My greatest fear is watching exactly what you are going through right now. Because of that, I feel compelled to offer some praise to Petrov and the oncologists over at the General Hospital, as they have been so accommodating with my sister, even though she has declined chemotherapy—an opinion the doctors themselves share, given the circumstances. They’ve provided her with a private room and keep her on constant IV fluids since she can no longer keep anything down and suffers from constant nausea. They will soon be performing an evacuation of her ascites, which is a high-risk procedure for her at this stage, requiring a family member to sign the consent forms because she insists on proceeding...
It truly feels as though they are doing everything in their power to make these final days more bearable for her...

PS: shadowmason6, I just saw your PM and replied now. Please forgive me, I missed the notification earlier. I hope it isn't too late 😢

I am so sorry there isn't better news to share, especially when someone is fighting with such limited strength left. Please, try not to let fear take hold; you are by her side through all of this, and that is what matters most. Hang in there...

slyseal28 said:I am also hoping for some semblance of change. In fact, that is precisely why—our association, working alongside an American patient advocacy group, is launching a formal petition to secure high-quality treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare. We will begin collecting signatures on July 11th at Central Park in Washington, D.C., and we plan to take the movement to other major cities as well.

We invite you all to join us. For the sake of everyone suffering...

Unfortunately, I won't be in Washington, D.C. during that time, though if there is any way at all, I will certainly make sure to sign. My mother and I were just discussing this yesterday—this constant struggle and the sheer impossibility of obtaining concrete information or necessary medication. People call me lucky, and I know they aren't wrong, but the fear that history will simply repeat itself, leaving us forced to beg at doctors' doors, is overwhelming. She was scheduled for a CT scan, yet she won't be seen until October 16th... absolutely terrible. Our healthcare system...

With fighters like you and Angela Wright, I truly believe things will change. They have to. You are gathering strength for all of us, and I thank you...

dustyranger11 said:My father was sent home yesterday. That dear doctor simply waved his hands dismissively and mentioned his favorite destination: some small town, USA. When I tried to look over his test results, he actually started shouting at me, claiming I was doing him a FAVOR by having inserted the probe and keeping him in the hospital for a few days... suggesting he’s done all he can for him. It is truly pathetic... 😢
I am going to try to take him somewhere else just to get a brain scan. At least then I might know if it has spread to the head. I asked the oncologist—a man who behaves more like a brute than a physician—if there was any sign of metastasis to the brain, and his response was: "It certainly could have spread, but there's no indication it has right now." Good grief. It's as if they'd rather just send him home to die...

I am speechless... 😢 It is inhumane, above all, and quite frankly, the utter rudeness shown by a certain doctor is unacceptable. 😢

cosmicviper76 said:My dear regulars! Over the last few days, I have read through every single post on this board, and I want to send my warmest regards to everyone, especially to our founder, Jane Doe...
Since everyone here seems to have their own unique story to tell, I suppose I should share mine as well, as I have this lingering feeling that putting it into words might offer some semblance of relief...
About a month ago, my father was diagnosed with colon cancer that has already metastasized to his liver—both lobes are affected. He’s had surgery on his colon and is currently waiting to begin chemotherapy to target the liver. Surprisingly, he feels quite well; his digestion is normal, his appetite is decent, and the doctors' prognosis remains somewhat optimistic...
But we are simply fighting the good fight, taking things one day at a time, and thanking God for every day we are granted together...
I am just wondering about one thing...
For a few days now, my dad has been experiencing pain in his shoulder, and I can't help but wonder if it's possible that the metastasis has spread there?
He insists that a nurse poked him and that it hurts specifically where she touched him, yet the pain seems to be radiating down toward his right wrist. He has a follow-up appointment this Friday, and I find myself feeling rather restless... if anyone has any insight, I would be truly grateful...
Anyway, hang in there, because we MUST NOT GIVE UP!!!!!!!

As you so aptly put it, there is NO GIVING UP, and regardless of what the prognosis says, life and the will to live are what truly matter...

I suspect that if the pain started where the nurse touched him and is now spreading, it might just be nerve-related... perhaps that explains why it's traveling? I imagine some of the ladies here (perhaps Angela Wright or slyseal28) might be able to provide a more specific answer, but in the meantime—do try to find some peace and keep your composure, because this battle requires not just courage, but a steady spirit...

Stay strong!

quietpilot87 said:Thank you, 🙂
It is quite a predicament since she isn't currently in town, and given her condition, getting her to Washington, D.C. is proving to be a bit of an ordeal... My father is also struggling immensely with the stress of it all.
I simply wish for her safe arrival in Washington, D.C....
I appreciate the support, 🙂

I completely understand where you're coming from; we dealt with a very similar situation when my dad was driving my mom 311 miles down south, then back 311 miles up north... I truly admire how they managed to pull through everything, and I know yours will too... just stay strong and keep that determination alive for her recovery... Hang in there... 👍

Angela Wright said:Just wonderful🙄...

Unfortunately...😲...

Linda Wright5 said:Melissa Kim45, hang in there, and please don't forget to take care of yourself too!
It’s a total circus here with my sister... she’s acting like a five-year-old on a sugar crash, and honestly, the level of suffering involved could easily be split among four people, though I’m sure she’d still find a way to complain that we aren't doing enough...
Fortunately, there are enough of us looking after her that we can sort of redistribute the burden, and through sheer force of will, we try to maintain our own sanity with whatever sense of humor we have left...

Believe me, we are barely keeping our heads above water with our own mother because of how much of a lunatic she can be. Sometimes her behavior is just so frustrating, and it is actually impossible to explain to anyone else what happens to a person when they are dealing with a serious illness. In all of this, I am desperately hoping that everything happening here is merely a side effect of the chemotherapy...

One really ought to fight against all these misfortunes—including sickness—with humor and laughter. When faced with grief and pain, a person tends to become small-minded and gives up far too quickly, so this is how you find your strength to keep going... stay strong...

quietpilot87 said:My mother no longer has lung cancer, as I mentioned before.
However, metastases have now appeared in her brain. 😢

Things were going far too well, simply too well... and now this.
I am not happy, nor am I "cool" about it. I am fully aware of the reality. But I am not happy. In truth, I am quite profoundly sad. Dammit... 😢
Forgive me, but dammit...

I attempted to reply to this post yesterday, but unfortunately, my response failed to publish...🤷

How could anyone possibly be happy when they are in such shock? It is impossible not to feel quite devastated while struggling to process the disbelief. Still, I am certain you will find the strength to face this all over again, to take a deep breath, and to strive to be your mother's greatest support and her fiercest advocate, a fighter for her sake. Hang in there... xoxo

Betty Sanchez82 said:I am truly grateful for all your kind words of support. This entire situation feels so foreign and overwhelming that I am almost at a loss for how to even begin processing it... I didn't actually ask that doctor for his opinion, nor did I pose any questions to him whatsoever. He simply blurted out that prognosis with such a chilling, inhuman detachment that it felt as though my very blood froze in my veins. After a few moments of catching my breath, I realized he was merely staring at me, as if waiting to see what else I might demand of him... It isn't that I am searching for pity or expecting anyone to feed me falsehoods, but to deliver such callous remarks is quite frankly unprofessional. I am personally aware of many individuals who were given incorrect prognostications; while I certainly do not expect medical professionals to be omniscient, one would hope they possessed a modicum of basic human empathy. I intend to fight this until the very end, and I remain hopeful that I will prevail... Thank you all once more.

I realize this is all quite new to you, but you will soon come to realize that those around you can often become remarkably cold, offering opinions that you never even wished to hear... Perhaps it wasn't entirely unwelcome that you felt that sudden terror and saw your blood run cold; once that initial shock subsided and you took a deep breath, I suspect that anger and strength emerged alongside it—the strength required to stand by your father and fight... Believe in that, and do not let yourself be consumed by thoughts of how much time remains... after all, time is a relative concept. What truly matters is what you share together: your resilience and your mutual love.

No matter how often I repeat myself on this forum, I must say that I witnessed firsthand the sheer willpower of my own parents, which ultimately defied every single prognosis they were given. My father was diagnosed with lymph node cancer thirty-four years ago, followed later by leucopenia, and he remains in good health to this day. As for my mother, she was given only six months to live and was essentially written off by the doctors, yet here she is, fourteen months later and doing perfectly fine. I truly hope it stays that way, but we simply take things one day at a time, refusing to be burdened by the weight of ticking clocks or uncertain predictions...

It is absolutely worth the struggle. Hang in there... kisses