Resources and support for families dealing with cancer and serious illness

Grace Fowler said:Hey there, my dear friends!
I have quite a bit of news to share, though I'll admit things feel a little bit up in the air right now... Regarding the chemo, I actually had a really positive response from the spots in my lungs, but unfortunately, the treatment didn't work on the pelvic area since I've already had radiation. On top of that, because the drugs are pretty hard on the kidneys, my right kidney took a bit of a hit, so the medical board decided that I can't continue with IV chemotherapy anymore and will have to switch strictly to oral Cyclophosphamide. At first, I honestly felt like they were giving up on me, but after sleeping on it for a night, I realized that I absolutely have to keep pushing forward! So, I went to consult with my surgeon about trying to surgically remove those masses in my pelvis, and he actually agreed to go for it. That means I'm currently just in that waiting phase for the surgery. Since Christmas is creeping up on us, I'm choosing to believe that a successful surgery will be my special gift from God for Christmas. That’s all for now... I'll check back in with more updates soon, and THANK YOU all so much for being such an incredible support system.
Dina

Dear Dina, you are definitely going to receive that gift!
Whenever things feel at their absolute worst, just remember how much stronger you are than you were last year and know that God is always right there by your side! When you feel like you're stumbling, He is there to give you that extra strength to stand tall again...
You are constantly in our thoughts and our prayers!
Hang in there, sweetie!

Is it possible for me to jump back in now? My internet connection is finally back up and running again—thank goodness!

mistyridge5 said:Is there any way I can jump back in? Now that my internet is finally working again...

Why even ask? Of course you can, and frankly, it would be quite beneficial...

I feel like I’ve moved on to a different stage of grief now...
It’s hard to believe, but it’s already been five years since she passed away.
Sometimes, I get this feeling that I might be the only one left who truly remembers.
I suppose I carry these internal scars—emotional wounds, really—because there wasn't anyone there to talk things through with. There was no objective voice to ground me, to challenge my thoughts, or to help me see the light during the darker moments...

That’s why I have such deep respect for this corner of the forum... For the people here... The fighters, and those who step up to help others fight their own battles.

Our story didn't exactly have a happy ending, though we certainly gave it our all.
We fought.
We kept trying.
Every single day, we were learning from one another—about different approaches, about the illness itself, and about various treatment options...
We did our best to cherish every second of laughter, and even those quiet, almost telepathic minutes of silence.
We fought TOGETHER against something that—perhaps—was already written in the stars as a WINNER.
We never backed down.
We didn't give up.
We never faltered.

Now, after all this time, I find that my strength sometimes just... vanishes. I guess I actually have less energy now than I did when we were right in the middle of the struggle.....
Why, oh, why??!!!

Good evening, everyone! I’ve been quietly following your stories and reading about everyone's personal battles with illness for a while now—and unfortunately, I've found myself right there in the thick of it too. My family is currently dealing with an astrocytoma.

mistyridge5 said:I have moved on to a different stage of grief now...
It has been five years since she passed...
I often feel as though I am the only one left who carries the memory of her...
I carry these wounds and scars because there was no one to talk to, no objective soul to challenge my perspective, to contradict my feelings, or to remind me that better days might actually exist...

That is precisely why I hold this corner of the forum in such high regard... These people... those who are fighting their own battles, and those who reach out to help others fight theirs...

Our story did not conclude with a happy ending, yet we gave it everything we had...
We fought...
We persevered...
Every single day, we learned from one another—about the methods, the illness, the various treatments...
We made an effort to cherish every second of laughter, every minute of that enchanting silence and unspoken connection...
We fought TOGETHER against something that perhaps felt written in the stars as a predetermined victor...
We refused to quit...
We did not surrender...
We did not falter...

Now, after all this time, I find that my strength occasionally vanishes. In fact, there seems to be even less of it now than when we were actively fighting...
Why, oh, why...??!!!

It is vital to recognize that you fought, that you learned... and above all, that you were IN IT TOGETHER! Sadly, victory isn't guaranteed for everyone, but in struggles like these, one must learn to identify what a true, honest victory looks like. You have already won simply by being together through it all. Whatever we do in life, whether times are beautiful or bleak... eventually, we grow weary of the effort, and it becomes difficult to keep going—just as it is difficult to keep fighting. That is likely why your strength feels depleted... you have been losing it bit by bit over time. However, a time will come when you can reflect on everything, remember your struggle and that sense of strength that carried you every day, and you will rise again, stronger and with renewed purpose. I am certain of it. Stay strong, because we are all much alike here—it is easy to stumble while waiting for the next hand to hold, especially when we wish we could be braver than those around us! kisses

gentlemoose62 and Nesta, thanks a million for all the help. I’m going to look into this a bit more, see what I can find out, and then I'll let you know how things turn out.

Hang in there, Dina! We might only be able to offer support from behind a screen, but I really hope it helps even just a little bit🙂

mistyridge5 said:I’m facing a different kind of battlefield now...
It’s been five years since she passed.
Sometimes I feel like I'm the only one left who actually remembers.
I carry these scars—emotional ones—because there was nobody to talk to. There wasn't anyone objective to push back against my thoughts, to challenge my feelings, or to remind me that better days were coming...

That’s why I hold this corner of the forum in such high regard. The people here... the fighters, and those who stand shoulder-to-shoulder helping others fight.

Our story didn't have a Hollywood ending, but man, did we try.
We fought like hell.
We gave it everything.
Every single day was a masterclass in learning about each other, understanding the treatments, and navigating the disease itself...
We clung to every second of laughter and every heavy, beautiful moment of silence where words weren't even needed.
We took on this monster TOGETHER, even when it felt like the outcome had already been written in the stars by a winner.
But we didn't quit.
We didn't throw in the towel.
We never backed down.

Now, after all this time, the strength just isn't always there. Honestly, I feel like I have less energy now than I did when we were actually in the heat of the battle...
Why, oh why??!!!

Check out the
Support thread for those who lost loved ones after fighting a serious illness
Feel free to vent and share what you're going through with people in the exact same boat over there. I started that specific thread because talking about lost battles here felt counterproductive; over there, you can truly unburden your soul to those of us who actually get it.

Has anyone here actually gone through one of those new PET/CT scans? What’s the actual procedure like—and does insurance even cover this stuff?

Nancy Hernandez43 said:The surgery is weighing on my mom right now! I don't know how big it is, but you can tell there's this huge fear about a possible relapse. She's just starting her recovery, and honestly, February is creeping up fast when those follow-up appointments are scheduled. I'm going to try and be right by her side when she gets the results so she doesn't spiral again.

Hang in there and stay brave!

That fear of it coming back is something you just can't shake... it's always lurking there, especially every time there's a little pain or a doctor's visit. But as time goes on, especially once those six-month checkups start, things feel a bit more stable.
It is so vital that she BELIEVES in herself—that even if a relapse happens... oh my goodness, it isn't the end, and she can beat it again. It's okay for her to feel weak or crash sometimes... she deserves that space... but after that, she'll find the strength to fight back. That's why I shared my own story here, and I really hope more people join in because we ALL need those positive vibes.

And you? You are such an amazing soul for caring so much for your mom, but please remember to look after yourself too. Don't let this weigh you down too heavily. You need to LIVE your young life, and she wants nothing more than to see you happy.
Make the most of this holiday spirit, enjoy every single moment, and the time will fly by. February will be here soon and 👍 everything will be OK.

gentlemoose62 said:The fear of a relapse is, unfortunately, an inescapable shadow that lingers indefinitely, surfacing with every minor ache and preceding every single doctor's appointment... yet, as the months drift by, particularly once those six-month checkups become routine, one begins to feel a marginal sense of security.
It is absolutely vital that she maintains FAITH in the idea that even if a relapse occurs... my goodness, it isn't the end of the road, and she can certainly conquer it again. She is permitted to be weak and to falter, as she has every right to feel that way... but after that moment passes... there must follow a counterattack and a fight. That is precisely why I joined this conversation with my own experiences, and I truly hope more people will share their stories, because we all desperately need those glimpses of positivity.

As for you, you are such a wonderful soul for caring so deeply for your mama, but you must remember to look after yourself as well; please do not let this weight crush you entirely. You need to actually LIVE your youth, and I am certain she wants nothing more than to see you happy.
Make the most of this holiday spirit, savor every fleeting moment, and the time will pass swiftly. February will arrive, and 👍 everything will be OK.

You have truly left some beautiful and uplifting words here.

One really has to become aware of the strength they possess, and both mama and I are slowly learning how to tap into that... and while I am not solely focused on her, I have, in a relatively short span, learned to cherish her just as anyone should cherish their parents: with profound respect and admiration. We both have our individual time, but when we are together—the strength is boundless. Unfortunately, that can only happen once a month right now, as circumstances simply won't allow for anything else.

Thank you so much! kisses

Grace Fowler said:Hey everyone!
I have quite a few updates to share, though the whole situation is a bit... complicated, I suppose. Regarding the chemo, my lung targets responded well, but unfortunately, the pelvic area didn't react to the radiation, and since the treatment is pretty hard on the kidneys, my right kidney took a hit too. Because of that, the medical board decided I can't continue with the IV treatments anymore; they’re switching me over to oral Cyclophosphamide instead. At first, I honestly felt like they were giving up on me, but after sleeping on it for a night, I realized I just have to keep pushing forward. So, I went to consult with my surgeon about trying to operate on those pelvic masses, and he actually agreed to do it. Now, I’m just in this waiting phase for the surgery. Since Christmas is coming up, I've been thinking that having a successful surgery would be my little gift from God for Christmas. That's all for now... I'll check back in with more news soon, and THANK YOU all for the support.
Dina

Dina, you're going to be the one wishing us all a Merry Christmas with some good news.👍

Hey everyone!

Has anyone actually visited Mayo Clinic since they went through those oncology "reforms"? We need to head in for a follow-up, but we aren't even sure which doctor we'll be seeing—they didn't give us any specifics when we booked the appointment. Does anyone happen to know who specializes in brain tumors there... and if this new departmental split is set in stone despite all the complaints from patients? Thanks.

Nathan Bailey said:Hey everyone!

Has anyone actually been to Mayo Clinic since they did that whole "restructuring" over at oncology? We need to get in for a follow-up, but we haven't even been told which doctor we're seeing because when we booked the appointment, they didn't mention a thing. Does anyone know who handles brain tumors now? And is this new department split set in stone, or are they still listening to patient complaints about it? Thanks.

My mama is still seeing the same doctor. Nobody has mentioned any changes to us, but then again, she hasn't finished her treatment cycle yet, so maybe that's why.

Dearest Dina,

I am sending you absolutely mountains of strength and all the positive vibes in the world! Just remember, there is no giving up, okay? You've got this! Sending you a huge kiss!

Hey everyone.

Most of us have dealt with some serious health issues, either personally or within our families.
You might not want to hear this, but I’d suggest checking out BRACE up in Appalachia. Seriously, they can help alongside whatever medical treatment you're getting. I'm speaking from experience here.

Thanks, I'll be in touch once I get everything sorted out.

Brian Clark78 said:Hello, everyone.

Most of us have dealt with some form of debilitating health issue, whether personally or through a family member.
I realize this might be met with skepticism, but I would strongly suggest looking into the BRACE facility up in Appalachia. Believe me, they can offer support that standard medicine simply cannot reach. I am speaking from my own lived experience.

Please, share the details of your experience.

Brian Clark78 said:Hey everyone!

Most of us are dealing with some kind of serious health struggle, whether it's personally or within our families.
I know you might not want to hear this, but I’d honestly suggest looking into BRACE up in Appalachia. Trust me, it can actually complement traditional medicine. I'm telling you this based on my own life experience.

Thanks for the input, but we've already hashed this out here and decided that this belongs over in the "Science Fringe" section.