Resources and support for families dealing with cancer and serious illness

Angela Wright said:Yesterday on NBC, they announced that a new outpatient clinic specifically for breast cancer support has opened up within the psychology department at Microsoft Hospital! I’m not entirely sure about the full scope of all the services they offer, but honestly, it is just such a wonderful, heartwarming initiative that deserves a huge round of applause.🙂

Oh, hey, I actually heard about that! My mom has actually become quite friendly with the lady who spearheaded the whole project, too. It is just so incredibly wonderful to see something like this getting off the ground, really! And🙂

That’s exactly what I was getting at, but you beat me to the punch 🙂
Anyway, just a heads-up that the clinic will be open this Wednesday from 8 AM to noon, and you can reach them by phone at 01/23 32 825.
It’s honestly devastating to think that in America, we see 2,300 women diagnosed with breast cancer every single year!!!
Angela Wright, make sure you recharge those batteries this weekend and just soak up the magic of a 'normal' life 👍

Carol Sanchez2 said:Hey, I’m actually familiar with that. My mom became friends with the woman who started it all. It's honestly great to see initiatives like this gaining momentum. And🙂

Could you dig a little deeper and find out exactly how their clinic operates and what kind of support they actually provide? It would be incredibly useful to take their "blueprint" for care and adapt it for other conditions—with the necessary tweaks, obviously—so I'm really curious about the mechanics. I’ve been thinking about launching something similar specifically focused on glioblastoma and other types of brain tumors.

crimsonfox102 said:Warm greetings to everyone...

I haven't been around for long—just catching up on old threads... it’s been over a month since we last heard from Betty Allen65 (John Doe's mom). Hopefully, her silence means she's doing okay?!

Thanks for thinking of me, zeljka 😘
Maybe this sounds a bit cowardly, but I just don't have the strength to reply to this thread... because I can't help but read everything before I post, and reading it all just sends me into a spiral of depression and hopelessness...

June 3rd marked exactly six months since my little girl passed. They say time heals, but it hasn't worked for me yet—it feels more like I'm in a hole, and the hole just keeps getting deeper. I’ve started seeing a psychologist again; she actually recommends I take some extended medical leave just so I can focus on myself, spiritually and emotionally.

On top of all that, my son found a lump on his leg 😲
Thank the Lord, though—it turned out to be just a swollen vein (we had an ultrasound done), and it's almost gone now.

I don't even want to tell you what our house has been like for those few days.

And so life goes on.
It really means so much to be able to chat privately with a few ladies from the forum—thanks, girls. 😘 😍

I miss my baby girl terribly.
I feel her all around me, yet I can't touch her. 😍 😍 😍

Kisses and hang in there!!!

Hey everyone, sending love from San Francisco!😘 😘 It’s absolutely sweltering here, but I somehow managed to sleep like a rock despite the heat. You know how exhausted I get when I don't rest properly.😬
I'll be back online with you all as soon as I get back to New York City.

I hope everyone managed to take advantage of the long weekend and get some much-needed rest. I certainly wasn't so lucky. I had everything planned out perfectly—a little bit of ocean breeze, plenty of sunshine, and just a chance to escape from everything going on lately—but then everything fell apart. An absolute crisis at work turned my break into a total grind.🙂
So, what else was I supposed to do besides surf? If I couldn't catch any waves, I might as well surf the web. I stumbled upon this site www.yasg.com, which you might have come across already, or maybe not. It seems like people everywhere are fighting these same battles. One thing I came across there that really caught my attention was the mention of drugs like Avastin and CPT11, which doctors sometimes prescribe after or when Temodal therapy isn't working as well as hoped. Some people report success, while others don't.
I did a little digging into Avastin, but honestly, most of the stuff I read in the American news was pretty negative, so I kind of lost interest.
Does anyone here know more about this? Specifically, is there any word on whether that combination is actually being used here in the States?
Best to everyone!

Ryan Fisher64 said:First off, I just want to say hello to everyone else hanging out on this forum.

Secondly, I’ve honestly never been one to frequent these kinds of online communities, but life has a way of forcing your hand and pushing you toward things you never expected...
Basically, my mother was diagnosed with cancer exactly eighteen months ago, and while the doctors were pushing standard chemotherapy, my family and Mom decided to head over to the Macron clinic in Washington, D.C. to follow their specific treatment protocols instead. Everything seemed to be going relatively smoothly until about six months ago when she started having this intense pain around her spine—we thought maybe it was just a setback, and the ultrasound did show some tumor tissue pressing against her kidneys, showing the right side was completely compromised though the left looked fine, so we stayed hopeful. But everything was actually okay until JUST YESTERDAY!!! I was sitting at work when she called from home, sounding panicked because she had fallen in the kitchen and couldn't get back up on her right leg, and then later that night, her right arm just gave out on her too, it was absolutely terrifying!!! Nobody can make sense of what's happening, so we rushed her to the local medical center this morning to figure out the damage. If anyone here has dealt with anything remotely similar, please, I am begging you to reach out and let me know if you have any idea what on earth is going on...
Thank you all so much beforehand

So, today marks exactly one week since the tragedy hit our family, and the official test results confirmed it was indeed a stroke... I genuinely thought I had lost my mother; for those first four days, I couldn't even speak to her, and nobody could really talk to her either, which apparently is just how it goes with strokes, but I just refused to let her sink into that darkness, so I made a choice to sing... and SHE SANG!!! She sang like she was back in the golden days of her life, fully conscious and somehow joyful, as if saying that if speech is gone, music will take its place. I kept massaging her helpless right leg and arm—I don't even know where that impulse came from—but while she was drifting in that half-sleep state, feeling so isolated by everything that had happened, I just said, "Mom, come on, let's sing together!"... she opened her eyes and we started on her favorite old song, that one about the golden leaf of love... it's the same song she used to sing with my late father (yeah, I lost him when I was only thirteen), and there was just this unspoken connection between us. Now, every single morning before heading to work, my sister and I go to her side to do the same, and we do it again in the evenings; we're giving it everything we've got, because she certainly did everything for us once. Then yesterday, Sunday, she woke up and told us she feels like her speech is coming back, and I still can't quite wrap my head around it, even though this past week has been the absolute worst stretch of my life, though I haven't let anyone see it...

Ryan Fisher64 said:It’s been exactly one week since the tragedy hit our family, and the official medical reports confirmed it was indeed a stroke. For the first four days, I honestly thought I’d lost my mother; she couldn't speak, and neither could anyone else—they tell you that's just how strokes work. But I refused to let her sink into that darkness, so I decided to sing to her. And man, did she sing!!! She sang like she was in the prime of her life, fully aware and joyful—as if to say, if speech is gone, singing is still an option. I kept massaging her helpless right arm and leg, and though I don't know where the impulse came from, while she was drifting in that half-conscious state, feeling isolated by everything happening to her, I just said, "Mom, let's sing together." Her eyes opened, and we started on her favorite song, "Golden Leaves of Our Love... don't cry, darling, I'll come to you." It’s actually the song she used to sing with my late father (I lost him when I was only 13), and somehow, we just connected. Now, every single morning before work, my sister and I go to see her and do the same thing, and we do it again in the evenings. We’re giving it everything we've got because that's exactly what she always did for us. Then yesterday, Sunday, she woke up and told us she feels her speech coming back. I can barely wrap my head around it. This past week has been the absolute worst of my life, even if I didn't let anyone see it.

Given the circumstances, I can finally say, "Thank the Lord everything turned out okay"🙂 She’s going to recover; it’s going to take time and grit, but seeing how you're handling this, I don't think that'll be an issue for you.
I wish I could feel that sense of relief myself.😳

Angela Wright said:Could you see if you can dig up some more details on how their clinic actually operates and what kind of support they provide? I was thinking it might be a great idea to take their "model" of care, tweak it a little bit, and apply those same principles to other conditions—it’s just such an interesting concept! I'd love to start something similar specifically focused on glioblastoma and other types of brain tumors.

I definitely can, and I'll do my absolute best to find out exactly what services they offer!

Angela Wright said:I suppose, looking at everything, I can just say "thank God my own mess turned out alright."🙂 She’ll pull through, though it’s going to take some serious time and grit, but I get the sense that won't be much of an issue for you guys.
Man, I wish... if only I could breathe a sigh of relief like that myself...😳

Apologize if I'm being a bit of a nuisance here, but what exactly is going on? 🙂

Ryan Fisher64 said:Apologize if I'm being a nuisance, but what exactly is going on here? 🙂

I'm just going to paste my response back to you from when this actually went down.🙂 :

The upcoming tests will determine if there's a neurological component at play, which is definitely a possibility. Just hold steady until you get those results back; all this preemptive fretting about what it *might* be is pointless, especially given your mother's medical history—it could be anything at this stage. From my layman's perspective, I can't rule out the possibility of a stroke. Did she seem slurred or have trouble speaking when you last spoke? This weather is absolutely brutal, too; people really struggle when the heat hits like this and the barometric pressure starts jumping around.
Stay brave and hang in there.

I honestly think we’re looking at a classic case of choosing the lesser of two evils here.😳

P.S. Was that actually what you were asking about?😕

hey everyone,

I’ve been lurking on this forum for a few months now, but I haven't really said anything until now.
My dad got sick back in January, and unfortunately, he passed away three weeks ago.

Man, I was terrified. Just wondering how we were gonna pull through... the sleepless nights, that constant dread waiting for the phone to ring... if you're going through this, you get it.

I couldn't even wrap my head around how Mom would handle things, or how life would just... work without him there.

I just want to offer some advice to anyone out there who's scared for someone they love:

Nobody knows how much time someone has left. It doesn't matter how bad the illness gets or how hard the fight is—keep fighting until the very end. As long as that heart is beating, don't give up.

Whether it happens today, tomorrow, in ten days, or ten years... just spend whatever time is left making it count. Make it good. Cherish every single day you still have. Talk to them....

I am so incredibly proud of my dad. He fought until his very last breath.
I'm heartbroken that he isn't physically here with us, but I'm grateful I got those few months
to spend together... they were special....

So I'll say it again: we can't control how much time people have left, but we can
make sure that time is meaningful. Hug them. Kiss them. Tell them you love them.... You might think it goes without saying, but it means everything to them, and honestly, it'll make you feel better too...

Giving away some Megamin if anyone can use it,
got plenty on hand... powder and tablets.
just shoot me an email.

Mike, I am so sorry for your loss.
I really hope things start looking up for you soon and the days ahead bring you some peace.

Mike, honestly, I feel for you, but I’m also glad you were selfless enough to share those realizations with us.
There’s this biblical saying my aunt used to tell me after I lost my grandmother—the woman who raised me and meant everything to me:
"Bury your dead and move on."
There is something strangely comforting about those words; they offer a sense of hope.😳

No matter how much it hurts and how heavy things feel, you just have to keep moving forward, right? I truly believe that our loved ones who have passed stay woven into the fabric of our lives, living on through us and everything we do...

Drew Price73 said:I’m just incredibly proud of my dad; he fought with everything he had right until the very end.
It’s hard, and it hurts that he isn't physically here with us anymore, but I feel lucky that I got those last few months
to spend some truly wonderful time by his side....

That’s why I keep saying it—none of us really knows how much time we have left, but we can certainly
make sure the time we do have is meaningful. Just hold onto that person, give them a hug, tell them you love them.... no matter how much you think it goes without saying, it means the world to them, and honestly, it leaves you feeling at peace, too...

Please accept my deepest condolences.

You wrote such a beautiful tribute. It just radiates warmth, and the thing is, love is something that never actually dies.
It’s the reason we’re all here, and if we leave this world having known it, then our lives weren't lived in vain. Truly, that's enough reason to find some happiness, even when you're trying to push through the grief.
Wishing you and your family nothing but the best.

Hey, John Doe!
I’ve been dealing with ovarian issues for about 8 years now—it's been a whole thing. I'm happy to share whatever info I've managed to scrape together, so just shoot me a PM if you want to chat...
Best,
P.S. I am truly sorry, Drew Price73... I really hope all your memories of your dad stay wonderful and that thinking of him brings a smile to your face instead of anything else....

My mom had to go back for an IV drip again—it helps with the coughing immediately, at least—but she’s just finding everything so much harder to handle lately. She isn't losing any weight; if anything, she looks like she might actually be putting on a little bit.
Now we've got blood work scheduled for Monday, followed by her usual round of injections. They’ll draw her blood at home first, then she’ll head into the hospital if necessary, which is probably going to happen. We'll likely have another session before her next chemo on July 10th, and then we’ll just have to see how things unfold from there.

We finally got around to shaving her head, which was honestly such a heavy moment. She wouldn't even consider it until she had her wig ready, which, by the way, looks fantastic on her 😍 and now she’s even admitting that it makes her look much more put-together. She also has this headwrap—I think they call them turbans? It’s really easy to style, you just twist it and tuck it in at the front. I ended up shaving her while she was completely wiped out, so she just didn't have the energy to make a big scene about it.
I told her she could land a role in the Brotherhood Law. 😁

I need to figure out some kind of reward for her bravery. Maybe take her out for coffee, though I’d rather not overstimulate her too much. While she was still at the hospital, we managed to get her out in the sun for a bit one day, and then the very next morning she just wandered right out of the ward—that’s our other hurdle, a touch of Alzheimer. She caused quite a stir on the floor, and a few incredible strokes of luck were the only reason she didn't end up somewhere dangerous or in a bad situation.