Resources and support for families dealing with cancer and serious illness

Angela Wright said:She went under the knife because it was just a superficial part. But when the recurrence showed up right at the edge of the incision, they refused to operate again. They told us they simply don't do that kind of thing.😕 My guess is they passed on surgery because my mom turned down oncology treatments immediately after her first procedure, so once the recurrence hit, they suggested radiation and Temodal instead.

When exactly were they diagnosed, and what specific type and grade are we looking at?
My aunt isn't speaking very clearly right now 😢 Did the doctors mention if this might just be temporary?

Anonymous said:Once she got the diagnosis, what type and stage were we looking at?
My aunt’s speech is a little slurred right now. 😢 Did the doctors mention there's a chance this is just temporary?

It was Glioblastoma MF, diagnosed exactly two years ago. Right after the surgery, my mom was talking a mile a minute—she wasn't fading at all. But then, about a month and a half later, things just bottomed out and completely leveled off. She didn't have any issues with walking or anything else. For six months—meaning until the recurrence showed up—she was functioning just like a perfectly healthy person.

Angela Wright said:glioblastoma MF, diagnosed exactly 2 years ago. My mom was talking a ton after her surgery—she wasn't fading at all—but about a month and a half later, things just leveled out and she seemed totally back to normal. She didn't have any issues with walking or anything else. For 6 months until the recurrence showed up, she was functioning like a perfectly healthy person.

And what stage? Sorry if that's too blunt a question

Anonymous said:What grade? Sorry if that sounds a bit blunt.

Glioblastoma is basically Grade 4 brain cancer, which falls under the broader umbrella term known as gliomas. For instance, you have things like astrocytoma, which is classified as Grade 3.

I was just as confused by the terminology myself, so I eventually had to get a clear explanation to make sense of it all.

Angela Wright said:Glioblastoma is basically Grade 4 brain cancer, which usually falls under the general umbrella of gliomas. For instance, there's also astrocytoma, which is considered Grade 3.

I was pretty confused about all this myself until they finally sat me down and explained it.

Aha, so it's Grade IV, but hers is multicentric?😕
And is it normal for her to be acting a bit goofy after surgery, like she's constantly joking around and laughing?

Anonymous said:So, is she looking at Stage IV or a Grade III astrocytoma? And what’s this "multicentricum" thing about?😕
Also, is it possible for her to act a bit goofy after surgery—just constantly joking around and laughing?

Look, if the pathology report explicitly says Glioblastoma, then it's Glioblastoma, not an astrocytoma. As for this "multicentricum" term, I'm not entirely sure how they're using it here, but it sounds like the tumor has multiple centers or focal points.😕

As for her acting silly or cracking jokes—yeah, that's definitely possible. We're talking about open-brain surgery here; you can't expect things to stay perfectly normal. Behavior can shift wildly depending on which specific part of the brain was touched or stimulated during the procedure.

Nicole Edwards76, my heart truly goes out to you.
I’m not doing great today. There’s this overwhelming sadness that I can’t quite put into words. I guess the tide just turned. I managed to hold it together and stay brave for six days, but today, I just broke. It’s been feeling like this more and more lately. I’m hoping tomorrow might be a little easier.
As most of you know, Mom is doing okay for the time being. She’s walking, she’s talking. But honestly, sometimes it’s the small things that wear me down the most. Just hearing her voice... God, it hurts. Her voice is right there—so familiar and warm—and then my mind immediately drifts to what everything will be like when it’s all over...
I find myself on this forum every single day. Even though reading through these posts often leaves me in tears, there's this constant pull that keeps bringing me back here, over and over again.
Best,

Angela Wright said:..I mean, if her report explicitly states glioblastoma, then it's glioblastoma, not an astrocytoma...

I realized immediately that I asked such a silly question 😁
how is your mom doing?

Amanda Williams64 said:Nicole Edwards76, my heart goes out to you.
I’m having a rough one today; I feel an indescribable level of sadness. I guess the tide finally turned. I managed to hold it together for six brave days, but today I just snapped. It’s been hitting me like this for a while now. Hopefully, tomorrow will be better.
As you all know, Mom is doing okay for the most part right now. She walks, she talks. But sometimes, it's this specific thing that just breaks me. Hearing her voice. Man, how much that hurts. It’s right there—familiar and warm—and then my mind immediately races to what happens when it's all over...
I’m on this forum every single day. Even though reading things here often leaves me in tears, there's this constant urge pulling me back, over and over again.
Hang in there!

God, everyone, sometimes it’s just so hard. I actually feel guilty even writing to you all about what I’m going through, because I know exactly where you are. I was in those same shoes two years ago, desperately hunting for anything—literally anything—positive regarding Glioblastoma just to find a shred of hope. Back then, I was completely alone with my thoughts since I don't have any siblings, and my dad refused to even touch conversations involving fear or negative thoughts. He handled it that way back then, and looking back, it clearly wasn't the best approach because he’s hit a breaking point now.

From my own experience, I can tell you: try to shut those intrusive thoughts down immediately, or they will absolutely destroy you emotionally. I spent six months in a total mental fog before I started cracking, and honestly, it felt like God sent my Gogić to help redirect my focus. You have to learn to "pre-mourn" your mother. That is the worst thing you can do to yourself, to your loved ones, and especially to your mom.
Eventually, all voices fade—yours and mine included. When the time comes to grieve our loved ones, we will do that then. Doing it now is pointless. No matter who our moms are, they are still here, and we need to be grateful for that—for every single second God grants us with them and for every note of their voices. There is only the present moment, and you have to cling to that fact. You have to accept things as they come and deal with them as they happen, because that's the only way to navigate this trial, even if it feels like this is how we'll have to live for the rest of our lives. You can never plan or think far enough ahead to truly prepare, because nothing ever turns out the way we imagined it would—at least, that's been my reality with my mom's illness and everything it's brought with it. I wasted so much energy trying to plan and prepare that I completely burned myself out.

I get it. I go through these exact phases at least once a month. I come here, I cry it out, and I vent to you all, and someone always points out something vital that opens my eyes and gets me back on the right track.

Sending you a huge hug.😘

steeleagle152 said:Hey there!
I've got a quick question. I felt this little lump under my left armpit, and it actually hurts when I touch it. It’s not huge—maybe about 3-5 mm if I had to guess.
If anyone has any insight, please let me know. I'm not trying to freak out, but I'm definitely a bit concerned too. Maybe someone else (sadly) has dealt with something similar and can share their experience?
Thanks.

I don't have firsthand experience with this, but seriously, please go see a doctor as soon as you can. It might be absolutely nothing, but if it is something, you don't want to waste a single second.

Hey everyone fighting this battle, and to all the caregivers out there standing by them.
I’m the mom of a little girl who was diagnosed with Stage IV neuroblastoma just 19 months ago. She wasn't even two years old yet. It’s one of the top three most common childhood cancers, and man, it is brutal. In our daughter's case, the tumor stretched across the right side of her abdomen from her ribs down to her pelvis, crossed the midline, hit several lymph nodes, and even metastasized to her lungs. We’ve pushed through four rounds of pre-op chemo and four rounds of post-op chemo, plus MIBG therapy, followed immediately by an autologous stem cell transplant. She’s doing great now, though we still have to do radiation just to be safe. She’s only 3.5 years old, and I really want to reach out and help other parents in the same boat by sharing what we've learned.
Please, don't fall for any "miracle cures," but things like beet juice, carrot juice, vitamins, and goat milk can definitely help the body handle the chemo better. Using non-alcoholic propolis can help prevent mouth sores, and some good old-fashioned ointment or propolis cream can help soothe skin irritation in sensitive areas.

Sending love to you all—may God watch over you and bless you.
I'M WITH YOU AND I LOVE YOU ALL

Nicole Edwards76 said:I’m so sorry, I just haven't had the strength to jump back on here until now. Just like Angela Wright mentioned, my mom passed away from Glioblastoma last week, almost exactly one year after her surgery.
Everyone, even though we lost our battle, I am rooting for you all with everything I have—I truly hope you win yours. If anyone needs to talk or has questions about what we went through, please don't hesitate to reach out.
Sending love,

I am so incredibly sorry for the loss of your mother.
The pain is just overwhelming, and honestly, I know there aren't enough words in the world to truly describe it...
Your mom's love is going to stay right there with you forever, just as your love stays with her. I really hope that love gives you strength during these hardest moments and acts as a little light when things feel dark.

Amanda Williams64 said:I’m just not feeling my best today; honestly, I am incredibly sad. I guess the tide has finally turned on me. I managed to hold it together and stay brave for six whole days, but today I just completely broke down. It feels like this has been happening more and more lately. I’m really hoping tomorrow will be a better day.
As most of you know, Mom is doing pretty well for the time being. She can walk, she can talk... and honestly, it’s that last part that gets to me sometimes. Hearing her voice. Oh, how much that hurts. Her voice is right there—so familiar and warm—and then my mind immediately jumps to what things will be like when everything eventually comes to an end...
I find myself on this forum every single day. Even though I end up tearing up so many times while reading through posts, I just can't help myself; I feel this constant pull to come back here over and over again.
Sending love!

There are just those days where the sadness builds up and hits you all at once, making everything feel so much heavier...
Please, try your hardest not to dwell on that "when it's all over" thought. Try to catch those thoughts the very second they pop up and stop them right there, because they only serve to drain your strength even more, dragging you deeper into the heartache like you're just rubbing salt in your own wound...
I know it is so incredibly hard, but please, just try to focus on the *now*. Right now, your mom is right here with you. Right now, you can hear her voice, and right now, you can give her a big hug... When the waves of pain feel like too much to handle, let yourself cry—really let it out—but once you've had that release, try to push those painful thoughts away. Just repeat a little mantra to yourself: Mom is here with me right now, and all that matters is this moment and this day...
I really hope that helps even just a tiny bit.
Hang in there! 😘

cosmicsailor91 said:Sending so much love to everyone out there fighting this battle, and to all of you standing right by their side.
I’m the mom of a little girl who was diagnosed with Stage IV neuroblastoma just 19 months ago—she wasn't even two years old yet. It's one of the top three most common childhood cancers, and honestly, it's incredibly aggressive. In our daughter's case, the tumor stretched across the right side of her abdomen from her ribs down to her pelvis, crossed the midline, hit several lymph nodes, and even spread to her lungs. We've been through the ringer with four rounds of pre-op chemo and four rounds of post-op chemo, followed by MIBG therapy and then an immediate stem cell transplant using her own cells. She’s doing so well now, though we're heading into radiation just to be absolutely safe. She’s only 3.5 years old, and I really want to reach out and support other parents walking this same heavy path by sharing what we've learned along the way.
Please, don't fall for any "miracle cures" you might see advertised, but things like beet and carrot juices, vitamins, or even goat milk can really help support the body while it deals with the intensity of chemotherapy. Also, using a non-alcoholic propolis can be a lifesaver for avoiding mouth sores, and a good soothing ointment or propolis cream can really help prevent painful inflammation in sensitive areas.

Sending my warmest wishes to you all again—may God watch over you and bless you.
I AM WITH YOU AND I LOVE YOU ALL!

Big hugs to you and your sweet girl!
May she always be surrounded by love and blessings!

Warm greetings to everyone...

I haven't been around for a little while... and I’ve spent some time catching up by reading through the old posts... it's been more than a month since we last heard from Una67 (the mother of Majmilije). I really hope her silence means everything is going well?!

My own family has been feeling the weight of loss due to glioblastoma, but we are somehow pulling ourselves together... You know, someone always has to be the one to shoulder the heavier end of things—trying to bring those who are grieving back toward balance and reality. My husband lost his father on May 10th of this year; he spends quite a bit of time at the cemetery lately, but when he comes home, I try my best to remind him that there are plenty of reasons to find joy. He has shut off the radio on me countless times and told me I'm being terrible, but I just let the situation settle and wait until I see an opening to talk with him... It isn't easy every single time, because glioblastoma essentially strips the soul away from those watching a loved one die. After months of witnessing that kind of suffering, it is incredibly hard to snap back into everyday life and explain that today is still a special day—that the sun is shining for us, and that someone deserves a smile or a touch simply because we are still here, alive, and wanting to live... I suppose I can say, thank God we have two sons, which means we have to put so much effort into raising them right and ensuring they don't suffer because of our grief... We actually managed to coax him into going to the movies to see Shrek... and it was wonderful; it made all the effort worth it because even he laughed from the heart...

crimsonfox102 said:Sending my best to everyone...

I’ve been away for a bit... catching up on some old threads... we haven't heard from Una67 (the mom from Majmilije) in over a month.
I really hope her silence means things are looking up.
My family has been reeling from the loss caused by Glioblastoma, but we’re pulling ourselves together somehow. You know, someone always has to shoulder the heavy end of the grief—trying to pull the mourners back toward reality and balance. My husband lost his father on May 10th of this year. He spends a lot of time at the cemetery, but when he gets home, I try to remind him that there are still plenty of reasons to find joy. There have been times where he’s snapped at me, turning off the radio or telling me I’m being annoying, but I just let the situation settle until I can actually talk to him again. It isn't easy every single time; watching someone die from Glioblastoma drains the soul out of those watching them fade. After months of witnessing that kind of suffering, it’s hard to snap back into daily life and explain that today is still a special day just because the sun is shining, or that someone deserves a smile and a touch because we are still here, living and wanting to live. I can say, thank God we have our two sons; it takes a massive amount of effort to raise them and make sure they don't suffer because of our pain. We finally managed to talk him into going to see Shrek at the theater... and it was wonderful. It made all the effort worth it just to see him laugh from the heart.

Hey crimsonfox102, it's good to see you. I was actually thinking about you just yesterday.🙂 Those drinks you brought over have been a lifesaver for my dad's old aunt; she’s become so frail and barely eats anything. They seem to be keeping her going, and Dad says she seems a little more spirited now.👍

Life keeps moving, but for your husband, that wound is definitely still fresh. It's going to take him a few months to adjust and find his new normal. Honestly, having those two great boys is such a blessing; they give him every reason to stay upbeat, and it’s almost impossible to stay stuck in a dark headspace for long when they're around. That’s part of God's plan. You'll all get through this. I hope you all get a chance to head down to the coast for a vacation soon. I think a trip like that would do you all a world of good.😘

First off, I just want to say hello to everyone here on the forum.

Secondly, I’ve honestly never been one to hang out on forums like this, but life has a funny way of forcing you into places you never expected to be...
Anyway, my mother was diagnosed with cancer exactly a year and a half ago. The doctors initially prescribed her standard chemotherapy, but our family—and Mom included—decided to go see Makronov in Chicago instead to follow their specific treatment protocols. For the most part, everything seemed to be going fine, at least until about six months ago when she started having this intense pain around her spine. We thought we knew what was happening, especially since the ultrasound showed the tumorous tissue pressing against her kidneys, and while her left side stayed okay, the right side had completely deteriorated... But everything was actually holding steady until JUST YESTERDAY!!! I was sitting at work when she called me from home, sounding frantic, saying she’d fallen in the kitchen and simply 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 seems to know what’s actually going on, so we rushed her over to the Mayo Clinic this morning to get some answers. Has anyone else dealt with something similar? If you have, please, I’m begging you, reach out and let me know what on earth is happening here...
Thanks in advance

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

Look, I’ve never been the type to hang out in forums like this or engage with online communities, but honestly, life has a way of forcing your hand and pushing you into places you never thought you'd visit.
My mother was diagnosed with cancer exactly eighteen months ago. The doctors initially pushed standard chemotherapy, but my family and Mom decided to go with Makronov in Los Angeles instead, following their specific treatment protocols. Everything seemed to be going fine until about six months ago when she started experiencing intense pain around her spine. An ultrasound showed that the tumorous tissue was pressing against her kidneys; the right side had completely deteriorated, though the left side remained stable. It was all holding steady until YESTERDAY. I was at work when she called me from home, sounding panicked because she had fallen in the kitchen and physically couldn't get back up on her right leg. Then, later that night, her right arm just gave out on her too. It’s absolutely horrific. Nobody seems to have any answers. We rushed her to the Mayo Clinic this morning to figure out what the hell is going on. Has anyone else dealt with something like this? If you have, please reach out—I desperately need to know what we are actually facing here.
Thanks in advance.

The tests will eventually reveal if there’s a neurological component at play, which is definitely on the table. Honestly, just hang tight until those results come back. This preemptive worrying about what "might" be happening is pointless right now—especially considering your mother's medical history, where anything is possible. If I’m being blunt, my gut feeling tells me we could be looking at a stroke. Did she seem slurred or have trouble speaking when you last spoke? This heatwave has been brutal, and these sudden shifts in barometric pressure can really mess with people.
Stay strong and hang in there.😳

Angela Wright said:The tests should eventually clear things up and show if there's a neurological component involved, which is definitely a possibility... just try to hang in there until the results come back, because all this worrying ahead of time about what it might be—especially considering my mom's medical history—it's really not helping anyone, and honestly, it could turn out to be anything at all.
Stay strong, you can do this😳

I was actually thinking along those same lines myself, but I figured I’d reach out somewhere just to get it off my chest, so if it does turn out to be something, maybe I'll feel a bit more grounded... anyway, thank you so much for the support, it really means a lot.🙂

NBC reported yesterday that the psychology department over at Microsoft Hospital just opened up a specialized outpatient clinic specifically to support breast cancer patients. I’m not entirely sure about the full scope of the services they're offering, but you really have to hand it to them—it's a fantastic move.🙂