Support for families dealing with cancer and other serious illnesses (Part II)

Angela Wright said:Look, what can I even say... that's just life. People get sick, people age, people drift apart... but honestly, life is also about how you deal with this crap. No matter how much it sucks, it's all part of the natural order, and we've got these built-in survival instincts that somehow keep us upright.
Just try to stay rational and, like I said, don't go staring down the barrel of the future any further than tomorrow. You tackle obstacles when they actually show up in front of you, once you recognize them for what they are. Nothing and nobody can ever truly prepare you for absolutely anything. But look, we all carry this strength inside us that we don't even realize is there. That's just my experience. I've lost a ton of things, but life finds a way to pay it back—mostly through my kids.
Be brave. It'll work out somehow. The main thing is to keep your cool and stay composed, because if you lose that, you lose your dignity too.

thanks for the advice😢

When we first found out about Dad’s diagnosis—it was actually the first time I’d ever even heard the word glioblastoma—and heard he only had maybe 9 to 14 months left, we were just completely blindsided. We spent a week without sleeping, barely eating, and honestly, just not talking to each other. Then the big question hit us: do we go through with the surgery or not? We eventually decided on the operation, partly because of some advice we read on a forum like this one. People kept saying surgery was the better path. Well, we took it, but immediately after the procedure, the left side of his body was paralyzed. He stayed that way until he passed. For the next eight months, he was immobile and totally dependent on Mom. Even now, I catch myself wondering if the surgery was the right call. Maybe he would have lived a shorter life, sure, but maybe he wouldn't have been so helpless, stuck in bed for months on end. I don't know. I didn't feel guilty when he passed away—I know he's in a better, safer place now—but I did feel a deep ache because I hadn't spent enough time with him. We lived 200 miles apart, and if I had known then how much I'd regret those missed moments, I would've jumped in the car every single weekend without a second thought. I would've spent two days just sitting there doing crosswords with him; it really cheered him up, especially since he couldn't write anymore. Today marks five years since he passed, and I just felt like I had to share this with you all. Maybe it might help someone else out there.

Chloe Flores83 said:When we first got my dad's diagnosis—that was actually the first time I'd ever even heard the word glioblastoma—and found out he only had about 9 to 14 months left, we were absolutely shattered. We spent a week unable to sleep, unable to eat, just completely shutting down and not talking to anyone. Then, the big question hit us: do we go through with the surgery or not? In the end, we decided to pull the trigger on the operation, partly because of the advice we saw on this forum. People were saying surgery was the better path. But here’s the reality: immediately after the procedure, the left side of his body was paralyzed, and he stayed that way until the end. For the next eight months, he was completely immobile and entirely dependent on my mother. Even now, I find myself wondering if the surgery was truly the right call. Maybe he would have lived a shorter life, but maybe he wouldn't have been so helpless, stuck to a bed for months on end. I don't know. I don't regret that he passed away—I know he's in a beautiful, peaceful place now—but I do regret that I didn't spend more time with him. We were living 200 miles apart, and if I had known then what I know now about how much I'd miss him, I would have jumped in the car every single weekend without a second thought. I would have spent two days just doing crosswords with him; it used to make him so happy, even when he lost the ability to write them himself. It’s been five years since he passed, and I just felt the need to share this. Maybe it can help someone else.

People who live in the "what ifs" are just wasting their lives.
According to most specialists, glioblastoma is hands down one of the most brutal diagnoses out there. Because of how this disease behaves, the best survival stories I've ever come across involve cases where every single tumor and recurrence was surgically removed, followed by aggressive oncological treatment to manage the state of things.
Ultimately, everything boils down to one thing: trying to squeeze out as much quality time as possible.
If you made the choice and he ended up hospitalized, don't sit there second-guessing yourself. Nobody in this world can give you guarantees. You did what seemed like the best option at the time. If you hadn't gone through with that surgery, and then—which happens almost every single time—he had collapsed into illness a few weeks or months later and just vegetated until he died, you probably would have spent the rest of your life blaming yourselves for not doing everything possible. You'd be thinking, "Maybe if we had done this, he could have had one more month..."
Unfortunately, in his case, the stroke happened right at the start.
Don't torture yourself with those questions. Just move forward and find some peace.
Spend your time with the people you love most, because life is just too short...

Hi,

What started as one person's simple request blossomed into something truly beautiful on Facebook...
https://www.facebook.com/permalink.p...&id=1504976677
Even people over at AllRecipes joined in...
http://www.allrecipes.com/slika/2284987/

Let’s all pull together...
This is about providing moral support...for sick children...their parents...and indeed, for every patient fighting a battle...
During my seventh month of pregnancy, I survived a pulmonary embolism. Just three days after reaching stability, I developed pneumonia with an effusion. I was incredibly lucky to have the unwavering support of my family, friends, and doctors... honestly, I don't know how I would have managed without it. In the ICU, you often feel like you've been reduced to nothing more than a physical body. People talk to you, sure, but most of the time, it's just the doctors and nurses working tirelessly to keep your body functioning. I found myself waiting for those brief thirty-minute visiting windows like they were sunshine, only for them to vanish in an instant. Every single phone call brought me joy. Every mundane conversation about everyday trivialities—that was what life felt like to me. Even though I am still in recovery, I am a mother, a wife, a friend, and a godmother... the moment I walked out of that hospital, I stopped being a "patient."
My story...http://www.allrecipes.com/clanak/u-jednom-trenu/
Best,

How’s everyone holding up? My dad doesn't see his oncologist for another 20 days or so, so we're still in limbo waiting to figure out the game plan for chemo and everything else.
He’s put on about 13 pounds.
Just gotta keep pushing...

Karen Thomas54 said:Hey,

What started as one person's plea turned into this beautiful movement on Facebook...
https://www.facebook.com/permalink.p...&id=1504976677
Even the folks over at AllRecipes jumped in to help...
http://www.allrecipes.com/slika/2284987/

Let's all get behind this...
this is about moral support...for sick kids...their parents...real moral support for everyone fighting an illness...
Back in my 7th month...I survived a pulmonary embolism. On the third day when things finally seemed stable...pneumonia with effusion hit me. I had such incredible support from family and friends...my doctors...honestly, I don't know how I would've made it without that support...In the ICU, you often feel like you're nothing more than just a body...people talk to you, sure, but most of the time...it's just doctors and nurses...working themselves to the bone...just trying to keep your body functioning....I was practically begging for those thirty minutes of visiting time like it was sunshine...those moments fly by in a blink...every single phone call...made my day....every little chat about mundane, everyday stuff...that's what life felt like to me....Even though I'm still recovering...I'm a mother, a wife, a friend, a godmother...once I walked out of that hospital...I stopped being "the patient"...
My story...http://www.allrecipes.com/clanak/u-jednom-trenu/
Later....

I'm honestly just glad her outcome was good, but my sister ended up with the exact same symptoms, only they diagnosed her with cancer, and unfortunately, it's already spread.

The only thing we can do is show up every single day and hold her up, watching her literally fade away right in front of us. It's brutal to watch. I really hope fewer people have to deal with something like this.

Andrew Lee60 said:Hi everyone, I hope you'll welcome me into the group. So, I'm 40, and back in 2013, I was diagnosed with lung cancer. It all started with these terrible bouts of pneumonia that lasted for weeks—those were my first real symptoms. I ended up at a hospital in Indianapolis where they told me it was just a standard case of pneumonia; I felt better, so they sent me home. However, during my monthly checkups, my X-rays always looked suspicious—there was this persistent shadow in the lower right lobe. They kept telling me it was just an infection.
After a few tests that didn't look great, I was referred to the Mayo Clinic, where I met Dr. Copernicus, a very young, brilliant, and promising physician. We immediately ran tumor markers, and he sent me for a bronchoscopy along with a full pulmonary workup. That’s when they diagnosed me with lung cancer in the lower right lobe. I had surgery in August 2013, which went quite well, and then I started my first round of chemotherapy.
But about a year later, in August 2014, a PET-CT scan showed a recurrence. I jumped straight into more chemo. Then, in December 2014, another PET-CT confirmed the disease had progressed to Stage IV. We decided to go with targeted therapy using Alimta, and after four cycles, we did a third PET-CT this past June, which showed an amazing regression of the disease. Since then, I've had two more rounds of chemo. I actually had a routine CT a few days ago and am just waiting on the results now. God willing, everything will be okay.
In my experience, while medical science is vital in the fight against cancer, if you give up mentally or spiritually, then it's really over. You have to keep fighting and try to stay positive—even when you're told your time might be limited (which I know is incredibly hard to hear, and no one should have to face that). You have to try to live normally and maintain a positive outlook. I realize this illness might have shortened my life, regardless of my age, but I'm doing my best to remain optimistic after everything I've been through. So, I want to wish you all lots of love and optimism. I'd love for us to share our experiences.
_

I wonder why they didn't start with the targeted therapy right away. 🤷

Kimberly Booth said:I’m glad everything turned out okay in this instance. My sister went through similar symptoms, though unfortunately, she was diagnosed with cancer that eventually metastasized.

The only thing we can really do is show up every day and offer our support, watching someone you love essentially fade away right in front of you. It's an incredibly difficult thing to endure. I truly hope fewer people have to face a disease like that.

I share that hope... that fewer people will have to contend with such devastating illnesses...

To be honest, my heart goes out to you. Support and love mean everything in these moments. It’s hard to bear, but it’s worth it. I cared for my mother through late-stage dementia—Alzheimer's—and my grandmother Anna dealt with a malignant tumor. I would hate to think we lost the fight or that I hadn't stood by them. Even now, as they drift into their final sleep, I feel at peace because I fought. But ultimately, there comes a time when you have to let your loved ones go.
I’ve shared stories about my mother and her struggle with Alzheimer's, as well as what happened with Grandma Anna, on this same page. In fact, the very first story I posted here was about my mother and Alzheimer's. I did my own research because I was desperate for answers; I remember being terrified of pressure sores developing while caring for her. Ironically, those sores started appearing just a few days after she was admitted to a specialized care facility. I brought her home immediately. With the help of doctors and nurses—and their excellent guidance and support—I managed to resolve the early stages myself. I’m just a layperson, but I know I succeeded because of love. When you love someone, nothing is too difficult.

Douglas Flores91 said:Why didn't they just jump straight to the smart drugs? 🤷

It just wasn't indicated. A huge number of these biological smart drugs aren't even cleared for use until the disease has already metastasized. I get that there’s a connection to clinical trials and the FDA registration process, but I still don't wrap my head around the logic here. If a drug is proven to target a specific cell type during the metastatic stage, why wouldn't it work the exact same way when the disease is still in its early stages? It feels nonsensical that every single phase of the disease has to be proven separately.

We’re making progress. Dad lost 8 pounds after the surgery, and we have an appointment with his oncologist tomorrow, so we should finally know when he starts chemo.
The stoma is giving him some trouble—it’s protruding by a few centimeters, which sent the home health nurse into a bit of a panic, but Dad says they told him anything up to 10 cm is perfectly fine.

Dana Martin87 said:We’re making some headway. Dad actually gained 8 pounds after the surgery, and he’s seeing the oncologist tomorrow, so we should finally have a timeline for when chemo starts.
The stoma is giving him a bit of trouble, though—it’s protruding by a few centimeters. The home health nurse panicked a little, but Dad says the doctors told him anything up to 10 cm is perfectly fine.

Given how much the risk of infection spikes during chemo, it might be a smart move to have a surgeon take a look at that stoma before the treatment actually kicks off.

He went in for his checkup, and they basically told him he could just fix it with his bare hands. Sounds absolutely insane to me, but here we are...
The oncologist couldn't give him any real answers yet because she needs to redo the CT scan and bloodwork, since those last results were all the way back in August. She mentioned that based on the old data, she’d probably just prescribe some pills, but she needs fresh numbers first. Oh, and get this—she actually told him he needs to find some kind of connection to speed up the CT scan. Good grief...

Dana Martin87 said:He went in for his checkup, and they basically told him he just needs to get things back on track manually. It sounds absolutely terrifying, but here we are...
The oncologist couldn't give him any definitive answers yet because she needs to rerun the CT scan and blood work, since his last results were all the way back from August. She mentioned that based on those old numbers, she’d probably just prescribe pills, but she needs fresh data first. Oh, and she also told him he needs to pull some strings to speed up that CT appointment. Good grief...

At least the woman is being upfront about it. I hope you guys can handle that conversation privately.

Angela Wright said:At least she’s being honest about it. I really hope you guys can handle that conversation privately.

No, honestly, good for her—but it's infuriating that people facing terminal illness have to jump through these hoops just to get essential scans done. He managed to pull some strings to get it scheduled, and now we're just sitting around waiting for the results. We couldn't dream of paying out of pocket; those private clinic prices are absolutely insane.

Angela Wright said:Look, what can I really say... that is simply life. People fall ill, they grow old, we lose those we love... but life is also about navigating these situations which, regardless of how heavy they feel, are fundamentally natural, and we possess our own innate mechanisms to sustain us.
Try to remain rational and, as I mentioned, try not to look further into the future than tomorrow... Obstacles are overcome once you actually encounter them and face them head-on. No one and nothing can truly prepare you for absolutely anything in advance. Still, we carry a strength within ourselves that we aren't even aware of... That is my experience. I have lost much, yet life has compensated me, most notably through my children.
Be brave. It will work out somehow. The important thing is to maintain your composure and peace, because without that, one loses their dignity...

Angela Wright,
because of people like you, and posts like this offering sincere support and a genuine desire to help, I am certain that many find things a little easier to bear...

From the very first day I joined this discussion, your advice has been what kept me going, encouraged me, and helped me through... My mother finally closed her eyes and sought her well-deserved peace after an incredibly grueling eight and a half years of fighting. Her sudden departure—even though we all knew it was coming—was a shock to us and to the medical staff at the Mayo Clinic alike. Ovarian cancer, stage IIIc. She underwent two intense surgeries, and a third wasn't recommended. After eighty-six rounds of chemotherapy, we stopped counting (my father insists she actually endured more than ninety)... It felt as though she were just checking into the hospital routinely, perhaps for a nephrostomy, to bolster her blood counts and prepare her system for another round of chemo. Unfortunately, her condition took a sudden turn for the worse, and that was the point of no return...

No matter how difficult and surreal everything feels right now, I want to share a word of support and strength with everyone here, and urge you all not to give up on your loved ones until the very last moment! They predicted my mother might have six months left of such a life, yet she lived seventeen times longer than that, teaching us all how to live life to the fullest...

(p.s. I will continue to follow along here from time to time)

Benjamin Grant6, please accept my deepest and most sincere condolences.
Your mother truly was a miracle. She is a living testament to how, even when faced with the bleakest prognoses and the harshest diagnoses, a well-coordinated oncological approach and solid medical care can grant someone significant, meaningful time. I am certain that over these eight years, you all cherished the most precious moments, focusing on those vital little things and core life values. Every goodbye is agonizing, especially one that feels far too soon, but if we view our existence within the vast context of the universe, we are merely a flicker. In the end, quality is what truly matters, not just quantity.
May she rest in peace, happy, and may you find peace in your heart to move forward with happiness, knowing you did everything possible and that she gained so much from your care. Let her rest easy.
Thank you for reaching out.

Nancy Hernandez43 said:Angela Wright,
honestly, people like you—with this kind of genuine support and the real intention to help—make things so much easier for the rest of us. I'm sure of it.

Ever since I first joined this thread, your advice has been what kept me going. It cheered me up and helped me through. My mom finally closed her eyes and found the peace she deserved after an incredibly long, 8 and a half year battle. Even though we all knew it was coming, her passing was so sudden; it caught us and even the medical staff at the Mayo Clinic completely off guard. It was ovarian cancer, stage IIIc. She went through two grueling surgeries, and they didn't recommend a third. After about 86 rounds of chemo, we actually stopped counting—my dad says she probably cleared more than 90. It felt almost routine for her, checking into the hospital to get a nephrostomy, getting her blood counts up, and prepping her body for the next round of treatment. But things just took a sharp turn for the worse, and there was no coming back from that.

As hard as this is right now, I really want to share some words of strength with everyone here. Don't give up on your loved ones, not even for a second. They told my mom she might get six months of a certain quality of life, but she lived seventeen times longer than that, and she taught us all how to truly live life to the fullest.

(p.s. I'll still be checking in on you guys from time to time)

I am so incredibly sorry for your loss. It feels like another battle has been lost... Just hang in there. Be proud of yourselves, because I know you did everything humanly possible to help your mom. These kinds of losses hit me so hard; they always bring tears to my eyes. It’s devastating, and honestly, I struggle with it too. I lost my own mother back in March to stage IIIc ovarian cancer, and it hadn't even been ten full months since her diagnosis. There isn't much to say other than life can be so unfair and merciless. Stay strong. Sending you a huge virtual hug...

Sadly, my sister lost her fight. She passed away on September 11th.

Kimberly Booth said:Sadly, my sister lost her fight. She passed away on 9/11.

I’m sorry... I hope her final moments weren't too painful.
Hang in there.

My dad supposedly has great results—no cancer currently—but his doctor prescribed six months of chemo anyway. Twice a month, involving three-day hospital stays.
It’s a bit of a gut punch because I really thought he might dodge the chemo given the scans, maybe just get some light cytostatics instead.

Kimberly Booth said:Sadly, my sister lost her fight; she passed away on September 11th.

I am so sorry. Please accept my deepest condolences.😢