Posts by Benjamin Grant6

slyseal28 said:I am in agreement with gentletiger46 🙂.

Nancy Hernandez43—you are attempting to draw a parallel between grassroots urban activism and the organized efforts of patient advocacy groups, which is quite a stretch... they simply aren't comparable. If we actually saw a massive wave of patients or their families publicly protesting or throwing their weight behind these advocacy organizations, believe me, the landscape would shift overnight. After all, when just one courageous patient and a single physician stood up to force an increase in coverage limits and emergency financial assistance for oncology services in San Francisco, it proved that meaningful change is possible, even amidst a recession...

I concur with your assessment. The comparison was intended specifically to highlight the fact that only a single patient has had the resolve to step forward...

gentletiger46 said:Nancy Hernandez43 — I find myself wondering why this wasn't documented in the patient feedback logs at the Mayo Clinic... Why am I seemingly the only individual who has voiced a negative critique in those records? I visited on February 16th, and to this very day, I remain the sole outlier. It isn't an overly complex task to speak up. Furthermore, why aren't you alerting your oncologist regarding these discrepancies? Yesterday, during my appointment with my hematologist, she actually reached out to Serena Williams to express her concerns that something was amiss with the PET-CT ordering process. I stepped in immediately to confirm that my experience was identical. You really should tell your own oncologist or hematologist. Change is impossible if we choose to remain silent about these systemic failures. You are welcome to message me privately—I had the exact same ordeal, traveling all the way from San Francisco only to end up with nothing to show for it... Perhaps we could organize ourselves for a new day and provide a statement to the press. We cannot allow this silence to persist. You don't even have to go public with your name; I am perfectly willing to use mine. However, there must be more of us...

I agree with your sentiment, though I cannot participate in any concrete action unless my mother decides to join us. Unfortunately, she is simply exhausted by the entire ordeal and lacks the energy to fight this battle further, as her only priority is ensuring the scan was completed and that we finally have the results in hand...

As a side note, I have no legal standing to intervene in her medical treatment, but that is merely a matter of personal circumstance.

Angela Wright said:We are dealing with a segment of the population that refuses to speak up because they are paralyzed by fear. It remains somewhat ambiguous what exactly they fear, though it likely stems from a deep-seated cultural conditioning forged over decades under the old regime, where silence was the only reliable mechanism for survival...
We constantly preach the necessity of unity, yet we witness scenarios where an individual dares to voice the unvarnished truth, only to be abandoned by their peers who refuse to offer even a modicum of support. Consequently, these individuals find themselves targeted by the establishment, publicly vilified and branded as lunatics.
I find the book title—suggesting tumor cells have an aversion to raspberries—to be quite poetic; it seems to provide a profound metaphor for the state of the national psyche, particularly within a body politic ravaged by malignancy.
Though, I suppose books are a futile endeavor; even if we were to translate it, our society seems far more preoccupied with sensationalist tabloids than actual literature...

In my view, the issue isn't necessarily the collective mindset, but rather the sheer smallness of our social circles.🤷On the other hand, through everything we endure, we find ourselves fighting solo and repeatedly hitting dead ends. Such is the nature of existence, I suppose... when one fights tooth and nail for success or status, there is a natural inclination to protect that progress, fearing that someone might exploit their own sincerity or misplaced optimism. Perhaps I am being overly cynical, given that in matters of health, we aren't discussing career advancement but life itself, yet we must acknowledge that not everyone operates from a position of equal opportunity in today's climate.

Kimberly Wright said:Yes...
And I find it utterly incomprehensible. It is as if nobody even mentions it...
It was only once my mother received her diagnosis, and I began discussing it with colleagues at work, that I realized there isn't a single soul in this entire corporation whose close relative—or perhaps they themselves—hasn't been struck by cancer.
A colleague, a dear friend of mine, was diagnosed with ovarian cancer while she was still just a teenager. Another coworker lost her father to esophageal cancer; a third lost a sister to sarcoma; a fourth lost her father to a brain tumor; one colleague lost both his father and grandfather to lung cancer, while his mother battled melanoma; another colleague’s mother dealt with ovarian cancer... and just last week, a colleague's father passed away from liver cancer.

I wonder, really, what are we talking about here? It feels as though every third person is touched by a tumor.

This is simply not a normal state of affairs... It strikes me as absurd that the media focuses so heavily on something like swine flu when so many people are dying from cancer. It defies all logic, and I struggle to understand why society chooses to reason this way... 😢

I have come to realize that from the moment my mother's diagnosis was handed down, both she and I have felt somewhat detached from the life unfolding around us. It is as if she has already departed, leaving me hovering somewhere in the periphery...
Judging by the sheer haste with which these screenings are conducted, I am left with the impression that my mother has already been written off at the very onset of her diagnosis. The medical staff seem to radiate a certain sense of helplessness and despair...

So, I suppose I am letting my emotions get the better of me today; clearly, I had far too much idle time to allow these thoughts to take hold. And besides, we head in tomorrow for the PET/CT results...

I have posed this question now, and those who have been here long enough know that I am merely a bystander, so I will admit that my own inquiry is somewhat hypocritical...😢 because I am not taking any action myself. Yet, whenever we manage to clear an obstacle, I find myself hoping we won't have to endure a similar ordeal again. People will likely spend these days protesting against fur usage because the local news is full of flyers regarding it... and I truly feel that if a flyer were ever distributed regarding the injustices faced by oncology patients, the response would be nowhere near as significant.

The greatest challenge for my family is living in a small community filled with prejudices and judgments, and unfortunately, battling cancer is often treated as the ultimate stigma. We haven't quite mastered navigating it, even though three years have passed, but whenever anyone did reach out, we made every effort to help. I believe many families are like ours—small, insular, and keeping their struggles to themselves simply because we lack the strength to be the first to speak up.

No matter how much your emotions overwhelm you, never think the things I have bolded above, because regardless of how harrowing and difficult the fight may be—that is simply what life is. What you both have realized through this struggle is not a detachment from life, but rather a clumsy opportunity to understand what life actually entails, and how trivial everything seems when someone comes to you complaining because they broke a nail or got into a fender bender... I won't waste more words on everything that suddenly becomes so banal!

I, too, am being swept away by these emotions, and they hit me in waves, quite terribly, but it is what it is... If these questions were constant, I wonder what would happen. This is how I live for a time: alternating between an illusion of total happiness and a harsh, unforgiving reality.🙄

And if I may add... there is no such thing as those who are immediately placed on a list of the hopeless, nor are there those immediately categorized as "winners," because regardless of whether doctors try or fail to indicate one outcome or the other—every patient is a distinct individual, and it is impossible to predict the final result.

Angela Wright said:Check out today's episode of Open:
In America, we lose 34 people to cancer every single day. Why is there such a persistent lack of funding for effective prevention, diagnostics, and treatment? What are the most frequent hurdles patients face? And how can we find a way out of this impasse for both oncology patients and their doctors?

Unfortunately, I don't have internet access at the moment, and I haven't been able to devote enough attention to this issue, which remains deeply personal for me. I missed the program, regrettably...

I can only say that I am utterly disillusioned with our healthcare system and feel that everything being done comes at the expense of those who truly need it most.

My mother scheduled her appointment at Medikol two months in advance. On Friday evening, right before her Monday appointment for the PET/CT scan, the clinic called just to confirm if we were still coming, given the terrible road conditions... Of course, we made the trip, only to arrive and be so appalled by the situation that we turned right back around and went home. After battling through 177 miles ice and snow, all to hear, "We're sorry, but we don't have the isotope liquids required for the scan." It was a stroke of luck they called us on Friday night rather than waiting until Monday at 10 in the morning to tell us they weren't prepared...😕

Why am I even writing this? Because this sense of helplessness is profoundly saddening, yet I find myself unable to react strongly, lest I further distress my mother—I try to shield her from any unnecessary worry or involvement, seeing how much this takes out of her...

The scan was eventually performed a week later than planned, and one might think, "Well, at least it happened." But for her, after three years of fighting, we only succeeded in exhausting her further with that wasted trip, and there is no happy ending here. Despite the specialist's opinion that they found nothing but more fatty deposits, her oncologists suspect an error occurred and fear there may be new malignant clusters. Why is it that abroad, doctors immediately act on suspicion and pursue radical measures, while here, they simply shrug their shoulders and wait until things reach a critical stage? How many people would actually have to go public to force a change? People will spend days standing like a "brick wall" protesting over something like Flower Alley, but if you asked those same people if they would engage with a life-or-death crisis like this, I highly doubt they would step up...

I might not be able to capture the full weight of the situation perfectly, but here is the essence of it...

Over the last two years and eight months, my mother has endured a relentless cycle of highs and lows, including two major surgeries and twelve rounds of chemotherapy. By nature, she has always been stubborn, headstrong, and incredibly persistent, though it seems she is only now realizing just how much her fighting spirit has wavered...

In two months, her follow-up appointment arrives—the second one since finishing her last cycle—and they are requiring a PET/CT scan. This is the second time she’s had to face this specific test, and the dread she felt during the first time was all too justified, as that was when the recurrence was discovered. Now, she is doing everything in her power to dodge the PET/CT altogether. One moment she’ll remember and say she has to go soon, and the next, she becomes furious if the subject is even breathed. The fear is so overwhelming that she exists in cycles; quite literally, she will have seven days where she seems "normal," followed by seven days swallowed by darkness. Since we can no longer be by her side twenty-four hours a day, there are days when she refuses to eat anything at all, and other days when she overindulges excessively. I am at a loss as to how to help her. She has stopped communicating with the rest of the family, reducing every interaction to clipped, hollow phrases like "I'm fine, bye," and she refuses to see a psychotherapist. While her terror is entirely understandable, I wonder if those of you who deal directly with malignant illnesses have any advice? Perhaps a book recommendation might help...

To make matters more difficult, my father is reaching his breaking point. I have delayed my own responsibilities as much as possible, but I will soon have to return home to face this reality with her. If her psychological state continues to crumble like this, I fear it will finish what the illness started, preventing her from truly breathing deeply again—especially since she has already won the most critical battles, her hair has grown back, and she should finally be able to reintegrate into society and enjoy her hobbies...

I simply had to vent these frustrations somewhere, as I don't know the proper way to handle them. Our conversations used to be filled with encouragement, but now, the illness itself has become a barrier to communication. Thanks to everyone...

Emily Fox15 said:My dear, my only one, has departed forever. I find myself hoping she is somewhere where pain, suffering, and tears simply do not exist. All that remains for me is an indescribable emptiness, a profound sadness, and the haunting questions of whether I truly did everything within my power... May the good Lord watch over you all.

Please accept my deepest condolences.

Do not let those questions weigh too heavily upon your soul—we would all give anything to alter the course of fate, yet you know deep down that you did so much... That emptiness will eventually lose its sharpest edges, though it may never fully vanish. Perhaps, in time, the joyful memories of her will begin to fill some of those voids, alongside the comfort of knowing she is finally at peace...

Stay strong.

nimbletrucker72 said:thank you, it really is true that this fight isn't over yet. I just need to find my footing again. Let the love for my children and my husband—who truly need me—guide me. And let me hold onto the knowledge that he loved me, even if it was in his own complicated way.....

Facing reality is difficult, but one truly must press on with the same, if not greater, fervor throughout life, even when loss feels impossible to overcome. Stay strong and be brave.

nimbletrucker72 said:So, we’ve finally finished our battle, even though we had only just begun to arm ourselves. Nothing will ever be the same again. The only solace is that there is no more pain or suffering for that poor, weary body... .................................sending my love and thanks to everyone! I LOVE YOU DAD, FROM YOUR LITTLE GIRL

No matter how much it feels like the fight is over, unfortunately, the struggle continues in the form of acceptance. Please, stay brave and truly believe that it was better for the pain to end. My deepest condolences and a virtual hug to you. Hang in there, and remember everything he would have wanted for you—how he would have loved to see you walking forward... because he will be right there following you..

Angela Wright said:My dear casualrider21, your reaction is quite predictable... However, there are always two sides to every story. In our work at the Association, we find ourselves collaborating constantly with doctors who truly pour their hearts out to us. They are perpetually fighting against hospital boards, the Department of Health, and Medicare with their rigid budgets, nonsensical regulations, and endless bureaucracy... They feel backed into a corner, having their intelligence and expertise insulted, leaving them unable to practice their craft or uphold the Hippocratic Oath. They are essentially paralyzed, often facing threats of termination if they even attempt to implement change.
While there are certainly some terrible individuals among them, most are simply people like us, reaching a breaking point under the pressure...
I am sorry for everything you have endured, but this is merely the inevitable fallout from a decaying system that is rotting from the top down... Doctors and patients are just small fragments caught in that larger chaos.

unfortunately, that is the harsh reality of it all.

casualrider21 said:I feel compelled to interrupt this thread abruptly...
As I sit here reading through all these complaints regarding doctors—their supposed expertise, their lack of genuine interest, the quality of service provided...😠
It fills me with such a profound sense of resentment when I reflect on everything, and seeing these comments only serves to fuel my desire to confront those individuals personally, 🙂 to look them in the eye and tell them they are quite possibly the most pathetic excuses for human beings I have ever encountered...😠
I am fully aware that doing so won't bring my father back, yet I cannot help but feel it would grant my soul a modicum of peace.
If only I had any support, I suspect I might actually rally the entire city to join me in exposing the truth and calling out those responsible... 😠
Of course, there are exceptions to these rules... and for those rare professionals, I hold nothing but the utmost respect.🙏
At the moment, my blood pressure is through the roof.

Please, take care of yourselves and continue to fight, both for your own sake and for the people you love most...👍

My own ordeal continues now with my mother... I find myself waiting for test results every single day, hoping that perhaps I will FINALLY be the one to share some good news. 🎉

Sending love. Hang in there.😘👋

Unfortunately, one wishes they could right the wrongs of the world, and if one hasn't been able to do so for themselves, then at least for others. But even then, one is left with that same bitter residue from remembering how much we are forced to struggle for our most vital asset: our health.

Now it is your mother's turn, and I sincerely hope you reach out soon with positive news—we could all use a little more positivity and good energy in our lives... kisses 😍

I tend to hover on the sidelines here, mostly because my own fears often leave me without the energy to truly engage. I don't spend my time poring over medical studies or reading thick textbooks; instead, I just find solace in reading your posts... My mother isn't much for reading either—she simply follows her intuition, listens to what her body tells her, and stubbornly pushes forward regardless of the odds.

Exactly two years ago, my father showed up at my door and uttered those heavy words: "I'm sorry, she won't make it, get ready..." and looking back, it really did seem that way. Today, after two years and six months since that initial diagnosis, following two grueling surgeries and two rounds of six chemotherapy cycles, she is still here, fighting selflessly by our side... (I suppose it’s selfish of me to say "we went through this," when I really should be saying "She is a warrior!")

She returned from her checkup tonight, and the next one isn't until late January. With every single follow-up appointment, the fear grows because it's so hard to fully trust the process... (it was stage IIIc ovarian cancer)... but for now, things are stable, and I am deeply grateful to God for that!

(I hope that perhaps, in some small way, I have shared a bit of strength with you all! Keep fighting—never give up...)

feralridge3 said:Hair loss is actually the least of my concerns... 😉
Right now, I’m working my way through that American Cancer Society book that the ladies from the Association are always raving about...

👍

feralridge3 It appears there is no content provided to rewrite...
The oncologist informed me that it would take roughly a year following radiation treatments for my hair to start growing back, though he did mention the sobering possibility that if the follicles themselves sustained permanent damage, it might never return at all... 😢
It has been exactly one year since I completed my radiation treatments, and yet the situation regarding my hair remains precisely as I described previously...
To be perfectly honest, I am not placing much hope on my hair making a full recovery... For the time being, it isn’t really bothering me, and I have no immediate intention of investing in a wig. I might reconsider that once I reach the stage of returning to work, though even then, I may find it unnecessary; with the way my head looks right now, I could probably scare off any animal in the woods quite effectively... 😁 😂

I have completed four cycles thus far, with two remaining, which means I should be wrapping up my temozolomide chemotherapy by mid-November... I underwent an MRI about a month ago, and as of now, there isn't anything appearing on the scans that shouldn't be there...

Just trust that eventually, everything will find its way back to where it belongs... Still, given this particular dose of humor, it is quite evident that you possess a certain strength, and I suspect you will discover solutions even if your hair doesn't miraculously grow back in those spots... 👍

quietraven0 said:I truly wish the same for everyone, because every single victory against this wretched disease feels like a win for all of us... It provides us with the strength to move forward, and I can only hope we see an increasing stream of good news...

Exactly so—every individual triumph feels deeply personal, though it remains painfully difficult to accept the losses of those whose struggles we have followed so closely...

It is a harrowing experience, yet we all emerge from these battles stronger... if only for ourselves and those we hold dear...

quietraven0 said:Nancy Hernandez43, I have to hand it to you...
I honestly thought I was being quite daring myself when I decided to chop my long hair down to shoulder length during the off-season🙄 hmm
It strikes me as rather peculiar that both of your wigs didn't last very long. My mother intends to wear hers only for special occasions or when guests drop by, rather than on a daily basis, so one would assume it might actually endure longer than three months...
Regardless, I am genuinely pleased to hear that your mother’s hair has already grown back an inch, and thick at that👍

I suspect your mother's wig had a short lifespan simply because she has to present herself in public perhaps two or three times a day... on the other hand, we live in a city where even finding basic maintenance products isn't easy—we only just managed to order and start using them this year.

Rest assured that your mother's hair will grow back, just as it has for everyone else who has navigated chemotherapy and recovery. I can only hope that for us, this is the final time, and that our mothers can return to that vibrant light they possessed before falling ill...

Stay strong. Just carry yourself with courage and grace in that new wig... I'm sure your mother will adjust to it before you know it. 👍

quietraven0 said:My mother started losing her hair this morning. Even though we discussed it and tried to mentally prepare ourselves, seeing it actually happen was quite a shock... Perhaps it would be best to just shave it all off immediately, though I am certainly no expert on the matter. I intend to buy her a wig, but does anyone have any advice on what to look for during the purchase? And what kind of price range should we expect?...

My mother has lost her hair twice now, and each time we simply waited until it reached the point where hoping it would stop seemed rather futile... We keep a pair of clippers at home, so she has simply trimmed whatever remained herself on each occasion. Regarding wigs—we both purchased ours through specialized medical suppliers. The first one cost us about $1,400, while the second was around $700; aside from the price difference, there wasn't much perceptible distinction, as both were completely worn out after two or three months of daily brushing and adjusting...😢

With the second one, she finished her treatment in May of this year, and today she has about half an inch of her own thick hair growing back.

The first time she had to face reality—that her hair would fall out and her appearance would be further compromised—it was truly harrowing. There were no words sufficient to comfort her, until she eventually found solace in the thought that once the chemo sessions were over, everything could look better again... During her second round of chemo, out of a sense of solidarity, I shaved my own hair down to about half an inch, and I have maintained that same length ever since. Naturally, it provides her some relief to see me right there beside her. Currently, we are just letting our hair grow out, laughing at the fact that we occasionally have to trim it so we don't look like complete wrecks, while my father inevitably lets out a cry of "again?"...🤣

We did manage to get a discount on the wig through her medical insurance, though I cannot recall the exact percentage... (the prices mentioned above were the full amounts without any discounts applied).

velvetorca12 said:The same goes for me... perhaps I can brighten your evening and offer a glimmer of hope... about 14 years ago, I underwent two surgeries. They removed my knee and replaced it with a prosthesis, and I endured 11 cycles of chemotherapy... my mother simply couldn't weather it all and passed away... but everything was fine with my father... which is why I am now 26, happy, working, and studying full-time; after every exam, you know who I call to share the joy... not a friend, nor a boyfriend, but my own dad... I am so grateful to him...

So, I am keeping my fingers crossed for everyone; please find the strength to fight for your children, your parents, and your grandparents...

How can one even process this every single day? To be so young while carrying such an immense history of resilience... 🙂 someone who hasn't faced illness doesn't even grasp how to cope with it, let alone realize the sheer depth of love from those who stand by us every single day...

Just keep moving forward through life—with courage, joy, and strength...

Susan Diaz91 said:she passed away.. in her sleep.... 🙂
there simply aren't any words in the English language capable of describing this grief... my dear friends, I feel as though my heart might actually shatter... 🙂
.... this pain is utterly unbearable

one finds themselves without the vocabulary to articulate such a loss, nor are there words sufficient to offer true solace... please, try to remain strong and refuse to let this agony break you—you still have a small life ahead of you, and a little angel who relies on your smile and your stability. My deepest condolences🙂

Sarah Perez59 said:My best friend has been diagnosed with lymphoma.
I can never seem to get the name right—I always find myself having to Google it just so I can copy and paste it like an absolute idiot. There is something about the word itself that feels inherently repulsive, making it nearly impossible to commit to memory...
She’s facing chemotherapy now. She hasn't started yet, but she’s currently scheduled for a million different tests to determine if any non-lymphatic organs have been affected.
I honestly don't know what lies ahead, I really don't...
I had so much more I wanted to say, but now, I am left without a single word...
We only found out yesterday, and she spent the entire day in total denial, insisting she’ll be back out partying before we know it...
I’m seeing her today, and I need to remain strong, both for her sake and simply by being there at her side.
I have to face this head-on—being strong and staying positive isn't about running away from reality or being delusional.
She has to confront it too, obviously—the doctor mentioned it is treatable, but every possible step must be taken toward recovery...
Yesterday, I just broke down; I couldn't believe any of this was actually happening to her. She had only just recently started finding true happiness.
But dwelling on that serves no purpose. It happened, it is what it is, and there is nothing left to do but fight.
My stomach has been in knots all day.
Truly, there is no sensation quite as wretched as helplessness, or the crushing uncertainty of what will happen and how...

They say you truly know your friends during times of crisis... stay brave and offer her unwavering support, try to coax a smile out of her and give her hope... let her spirit remain strong so that her body might follow suit. My father is still alive, healthy, and full of life even after thirty-four years following a similar diagnosis.

Unfortunately, illness doesn't care about age, and while it’s shocking for you to process, just imagine how devastating this is for her personally—so please, do not let yourself feel defeated by it. Your strength lies in liberating her from those dark, heavy thoughts and continuing to be the best friend she has always known.👍