Resources and support for families dealing with cancer and serious illness

My dad’s started having this intense pain around his lung area and his lower back—probably his kidneys. What could this be? The doctor told us to get him to the hospital immediately for an evaluation, but he’s refusing to go. He keeps saying he just wants to die at home, which is the first time he's ever said anything like that... I’m honestly lost. He’s completely exhausted, miserable, and just so restless from the pain. Does anyone have any insight? Is this a sign that things are taking a turn for the worse, like he’s heading toward the worst-case scenario? It feels awful, especially since I’m stuck here in Washington, D.C., while he’s all the way over there...
Thanks for the replies!

Laura Kelly91 said:Dad has started having really intense pain around his lung area and his lower back (probably his kidneys). What could this be? The doctor told us to bring him into the hospital for an exam, but he refuses to go. He keeps saying he just wants to die at home—that's the first time he's ever said anything like that... I'm lost. He’s completely exhausted, miserable, and so anxious because of the pain. Does anyone have any idea if this is a sign that things are taking a turn for the worse, like he's heading toward the worst-case scenario? I feel terrible; I'm stuck here in Washington, D.C., while he's all alone over there...
Thanks for the replies!

Oh honey,😢
I think your best bet is to call 911. If it turns out to be the absolute worst, you won't have to live with the guilt later thinking you didn't do enough to make him comfortable. Maybe they can give him something for the pain right away, or perhaps the doctors at the hospital will prescribe him some Durogesic.
Personally, I would call emergency services. There isn't really another way.

Laura Kelly91, may the Divine give you all the strength you need. I honestly don't know what to tell you. It’s just so incredibly hard.
I'm keeping my fingers crossed for you.

This isn't really a thread for celebrations, but I have to say that over the last six or seven months, this place has meant the world to me and helped me more than I can say. Through your advice, your answers, your outlook, your sheer presence, and the way you all fight alongside your loved ones—your courage proves that a human being is carried by something truly miraculous, and if there is any grace to be found in suffering, perhaps it's that this miracle reveals itself through the pain. Some people aren't here anymore, but they are never truly gone. With everything I am, I know they've just stepped out of this visible reality for a moment.
I wish you nothing but the very best in the New Year and every year that follows.

My mom isn't doing so great mentally right now. She’s restless, waking me up in the middle of the night. She’s constantly trying to go somewhere, complaining about aches, saying she needs to walk so she just paces around the apartment. I don't want to knock her out with pills, but I'm at a loss for how to make her comfortable. She eats, but she doesn't gain an ounce. She deals with constipation, but once she has her tea, she clears out massive amounts. Her lab results were good, so now I'm terrified that it was just a temporary lull before things get worse. Her follow-up appointment is in about two weeks, and apparently, she might need another round of chemo. Yebem. We'll see once the doctor gets back. This weather is just miserable—all this wind and winter chill makes it impossible to go outside. Maybe she should try stepping out for even just ten minutes. I really have no idea what to do.
Some people link this kind of behavior to sodium levels dropping, and if that’s the case, then whatever else is happening probably isn't good either, though I won't even go there.

Oh, and the stool is brown. She showed me. 😁😁
That's one weight off my shoulders.

Humans are strange creatures, aren't they? 🙂

hey everyone,

this is one of those threads where I’m mostly just lurking—I read everything you guys post, and sometimes, honestly... I find myself reliving things all over again that I'd much rather just leave in the past.

For most of us, 2007 was an absolute nightmare of a year. Some of you will carry those memories forever, and I know others just want to forget the whole thing in about four or five hours flat.

I really hope 2008 treats you better. I hope it doesn't throw as many hurdles in your way as this last one did—but even if it does, I truly hope you find a way to leap over every single one of them.

🙂

Hey everyone!!!!
I'm just sitting here on this last night of the year, and I couldn't help myself—I just had to jump on here to say hi and wish you all a much better, brighter 2008... even though I learned a long time ago that you really should be thanking God every single morning just to have another day ahead of you, I truly, from the bottom of my heart, hope all your wishes and dreams actually come true.
Dan:-)

First off, I want to wish everyone a very Happy New Year 2008! My mom was just in for a checkup, and Dr. Soltysek mentioned that her situation is actually quite an interesting case—mostly because the growth isn't spreading further, which is pretty unusual for something like a glioblastoma. Now, she’s been prescribed Medrol, and I was wondering... does anyone know why that would be used in this context? Also, has anyone here tried using Green Magma? I’ve come across some really intriguing accounts regarding its effects.
All the best again, sending love to you all

Hi everyone,
First off, I can tell you that my wife is doing well. In three days, it will be exactly 16 months since her diagnosis. Her next MRI is scheduled for mid-January, and I am praying to God that there still isn't any sign of a recurrence.
As for me, I can inform you all that I’ll be joining the ranks of brain surgery patients within the next two weeks. I’ve actually been at St. Jude’s Hospital for two weeks now (spending this weekend at home for two days), and on January 7th, 2008, I’ll be moving over to the Mayo Clinic for surgery.
It all started after some strange "visual sensations"—basically losing my depth perception—which first began a few years ago. Two weeks ago, I experienced that sensation again, followed by a full-blown epileptic seizure, which landed me in the hospital. All I remember is the start of the seizure and this so-called aura, a flash in my left eye that looked like a spotlight, and then nothing. It was an interesting experience, though certainly one I wouldn't want to repeat. My CT and MRI scans revealed an arteriovenous malformation with dilated feeder arteries in my brain, which was the direct cause of the seizure. It seems like this malformation was congenital, but it has finally started causing problems and making it impossible to live a normal life. I'm currently on Lamictal, so I'm protected from further seizures. Aside from some pressure in my head, I feel perfectly fine.
During today's consultation with the neurosurgeons at the Mayo Clinic, surgery was proposed as the best solution, and I have accepted. I can tell you that I'm not afraid; if anything, it's the opposite. I want this done as soon as possible so I can be in top shape for when my wife is going to need me much more than she does right now. Of course, there is always a risk with brain surgery, but I deeply believe I won't face any negative consequences. And if there have to be risks, I'd rather take them than deal with the state I'd be in without the operation.
Because of this, I won't be around the Forum for a while.
Thank you all, and especially Ivanica, for the support you provide us in this fight.
I wish everyone on the Forum success in their battles against illness in the coming year of 2008.
Best regards to everyone, and I'll write back once I've recovered from the surgery.
casualpanther1

My dear friends, to all of you,
to those who have contributed even once to this Forum,
and to those who have been quietly observing our discussions,
but especially to NUSAZVRK, Ivanica, Dan, Dan, Lecko, and Koka,
who personally provided me with immense strength during the darkest chapters of my life—along with your entire families—I wish for this coming 2008 to bring an abundance of health, recovery, resilience, and faith in better days. It is my sincere hope that this new year proves significantly superior to the last, avoiding its old pitfalls. I wish peace and prosperity upon you all.

casualpanther1, hang in there; I am wishing both you and your wife a swift recovery. Please reach out as soon as you are able.

I want to wish everyone in this thread a HAPPY and successful New Year's Day! Most importantly, I hope we all find the health and strength needed to tackle whatever comes our way, and may 2008 be much better than the years we've just left behind. 🙂

Angela Wright, I’m not sure if you even remember me since you didn't get a chance to reply to my last post, but regardless, I really wanted to thank you for starting this thread and for the kind words you shared when I needed them most. To be honest, I was terrified I wouldn't make it to the New Year with my mom because of her illness; in a way, it felt like I wouldn't, since she’s been stuck in the hospital 😢 but she’s finally coming home tomorrow 🙂

Thank you so much—you’re wonderful. I hope every kind word shared on this forum brings comfort not just to me, but to everyone else too, and that those blessings come back to you tenfold in the years ahead. 😉

Anonymous said:Angela Wright, I’m not sure if you even remember me since you didn't get back to my last post, but regardless, I wanted to say thank you for starting this thread and for those kind words you shared when I needed them most. To be honest, I was terrified we wouldn't make it to New Year's Day together because of my mom's illness—and in a way, we aren't, since she's currently stuck in the hospital. 😢 But he's finally heading home tomorrow. 🙂

Thank you so much, beautiful. I hope every single word you've written here brings comfort—not just to me, but to everyone else in this thread too. May that kindness come back to you twofold in all the years ahead. 😉

Man, I am so sorry, I honestly have no idea how I missed that.😢
I'm glad your mom is coming home. It’ll be a good chance to make up for all that lost time.😉
I hope you’ve learned from this little example that jumping to conclusions is a losing game. You spend all your time spinning these dark scenarios in your head, building up a mountain of fear and anxiety over things that haven't even happened yet. Then, reality hits, and you realize everything turned out completely different from the nightmare you were busy constructing. You basically spent all that energy stressing yourself out and creating massive pressure for absolutely no reason.
That’s why I want to tell you and everyone else once again— Stop trying to live in the future.Let things play out exactly how they’re meant to, but always stay present and ready to step up whenever you can. Anything else is just an illusion—it's a massive energy drain that serves absolutely no purpose.

casualpanther1 said:Just wanted to give you all a heads-up: I’m joining the ranks of those facing brain surgery over the next two weeks. I’ve been at the local medical center for about two weeks now—just spending the weekend back home for a breather—but on January 7th, 2008, I’m heading over to the Vinogradski hospital to undergo the procedure.

Good God, you guys are really hitting a streak here.🙄 😢 This whole situation just goes to show how unpredictable life can be. Honestly, I think there was a bit of Divine intervention at play here, stepping in at just the right moment to get things moving so your wife can keep receiving the fierce, unwavering support she needs to fight this. I really hope she’s holding up okay; I can only imagine how incredibly heavy everything feels for her right now. Hang in there, Serge. Just stay brave. Please reach out the second it's over and you're actually up to typing—we're all thinking of you. If you need anything at all, you know we've got your back.

To all you wonderful people out there.
May the days ahead roll by one after another just as they should, and I hope you all stay as resilient and battle-ready as you've been so far. When you inevitably stumble, remember that there’s always someone here ready to pull you back up. This year is going to be a turning point because we finally have this Association, which can—and absolutely must—drive meaningful progress. Our goal is to provide real protection, shield you from the usual bureaucratic headaches, and above all, offer genuine, heartfelt support to people who have lived through exactly what you've endured. Most of you are probably experiencing for the first time what it truly means to face a situation you wouldn't wish on your worst enemy. We are going to need every bit of your backing during our upcoming initiatives. A small handful of us can't possibly stand against the entire rusted machinery of the system on our own. So, as soon as our actions kick off—and you'll hear about them immediately—get everyone you know involved. Rally anyone standing by your side to lobby for a better tomorrow for all of us and for our children.

I want to say thanks once again to everyone here for the support and for cheering me on through this past year—easily the hardest stretch of my life. I truly appreciate all the advice, the comfort, and the sympathy you’ve shown me during my lowest points. God bless you all!

I'm wishing every one of you health, love, hope, and an abundance of faith, granted by the grace of our dear God.
Have a wonderful Summer season!🙂

I truly hope that 2008 turns out to be a much brighter and more successful year for all of us.

I want to wish so many, many smiles to my dear friends who are walking this difficult path alongside me; may every bit of effort you've put in return to you manifold.

More than anything, I wish you health, because once you have that, everything else eventually falls into place.

Happy New Year!!!

Sending love, Carol Ramirez 😍

Hey everyone, I’m just so relieved that the bad luck from last year and the years before that hasn't repeated itself! I truly wish you all a much happier New Year's Day!

I also want to wish all of you a much more successful New Year's Day—wishing you plenty of health, happiness, joy, and beauty! 🙂

My dear fellow members, starting with Angela Wright, then Linda Campbell, and moving through all of you who are gathered here reading this...

We have left behind an old year that surprised us all in rather unpleasant ways; however, as we step into the New Year, let us choose to embrace only the pleasant surprises, for I am quite certain that is how it shall be...

May you walk boldly upon the paths of success, accompanied by abundant health, love, and the joyful smiles of your loved ones. Continue to fight and find your strength, never wavering in your determination to fulfill your desires or to live bravely, making the most of every single day spent creating beautiful moments with those who need you most...

Stay strong!!!!! Sending many kisses from Nancy Hernandez43!

Karen Fox36 said:First off, Happy New Year 2008 to everyone! My mom just had a checkup, and the doctor mentioned her case is actually quite interesting because it isn't spreading further, which is pretty unusual for a glioblastoma. Now she’s been prescribed Medrol—does anyone know why they go with that? Also, is anyone here using Green Magma? I’ve been reading some fascinating accounts online.
All the best again, sending love to you all

It’s good news that it's staying put! You really have to buy time while waiting for a better treatment to hit the market.
Medrol is a corticosteroid, specifically containing dexamethasone, which works to reduce the swelling around the tumor. That swelling puts pressure on the brain, which is what triggers those various neurological issues.
Personally, I don't get why some patients get Medrol while others get Deksić. My mom was on Deksić, and when I asked the doctor why she wasn't on Medrol, I was told it just isn't as effective at handling brain edema compared to other types of swelling caused by tumor growth elsewhere in the body.

We haven't heard from you in a while, Amy Hayes28. Honey, I hope everything is okay. Please check in and let us know how things are going with that new brain tumor medication they were mentioning for your dad.

Dear friends,

I want to wish everyone nothing but the very best as we head into 2008.

I haven't had a chance to check in lately because we’ve been in the middle of moving. We don't have a phone set up at the new place yet, which means no internet access either. Most of my updates will be coming from my office or whenever I can get a connection at someone else's place. 😁

I hope you are all doing well. Over the next few days, I'm going to try to wrap up all the remaining paperwork regarding the Association...

That’s all for now... sending my warmest regards to everyone, and hoping this new year turns out to be much better than the last one.

I want to wish everyone so much health and happiness in 2008! This Forum has truly been such a massive help to me while navigating my mom's battle with breast cancer—it honestly feels so much lighter having all of you by my side...

Angela Wright, as soon as you find out how we can officially join the Association, please let us know!

Sending kisses to everyone!!!!

I want to wish nothing but the very best for all of you who are out there fighting these illnesses, and for your families as well, as we head into the New Year.

What does one wish for someone truly dear?
I wish you sunshine even when the rain falls,
I wish you a smile when tears begin to flow,
I wish you light amidst the darkness,
And I wish you a year far more beautiful than any you have known in the US... from the bottom of my heart.

Hey everyone... I want to wish you all the absolute best in this coming 2008. I hope your year is filled with smiles, happiness, and those little moments of joy with your loved ones. Most importantly, I hope you find the strength and grit needed for the battles still ahead of us!! 👍

You guys are such a huge support to me, and I'm honestly just glad this Forum exists. Love you all, 😍