Support resources for families dealing with cancer and other serious illnesses

My heart truly goes out to everyone sharing their losses here. I have walked that same dark path myself, and if there is anything that has brought me a sense of inner peace after such profound suffering, it is the quiet certainty that I
1. gave every ounce of strength I possessed, far exceeding what I thought was even possible
2. dedicated every precious moment and all the love my heart could hold to someone who was drifting away
3. found the grace to say goodbye when they reached out to ask for it.

Because I was living in a different state at the time, my greatest anxiety was the fear that I wouldn't be by their side during those final breaths. But what I can tell you with absolute conviction is that people seem to know instinctively when those moments arrive; they sense it, and suddenly, those final twenty-four hours become a sacred window spent entirely with their loved ones. I believe the most vital thing one can do in such a season is simply to hold the hand of the person you love while they venture into that unknown territory. Believe me, there is so much about this existence we don't understand, and these souls choose this specific path for a reason. Perhaps I am wandering off on a tangent here, but I felt compelled to leave this message behind. As strange as it may sound to those reading this, my own soul reached out to me from the other side, and since then, I have carried a deep sense of peace and love within me. I know they love me, just as I love them. No matter how heavy the burden feels right now, nothing in this life happens by mere accident; stay strong and remain brave, for this is the journey your soul chose before it ever stepped foot into this world.

I am quite curious to hear about your various experiences regarding the process of "securing" a referral for a PET/CT scan.

How did the ordeal unfold for you? Was the process relatively seamless, or did you encounter significant hurdles? What kind of reasoning was provided to you? Did you feel as though they were intentionally stalling or being evasive? I am truly interested in understanding what the reality of the situation looks like here in the States when dealing with such matters. I assume there are waiting lists, of course, but the actual mechanics of the interaction interest me deeply...

To illustrate my point, I shall recount my own recent encounter with Dr. Smith.🙂 When I inquired about obtaining a PET/CT, she informed me quite curtly that her department had absolutely nothing to do with such things and suggested I look into a private facility like Quest Diagnostics instead. When I pointed out that, regardless, it is her role to issue the referral, she seemed momentarily stumped, before pivoting to insist that the machine itself is incredibly hazardous—suggesting that the radiation levels are so high they could actually trigger new cancers, and therefore, one really ought to avoid it altogether.🙂🙂🙂🙂 I found myself somewhat bewildered by the sheer absurdity of the response, so I simply stopped asking questions at that point.🙂🙂

Furthermore, I recently overheard a similar conversation in the hallway; a colleague of the aforementioned clinically depressed doctor was attempting to persuade a patient that a standard head CT was unnecessary, arguing that even a regular CT scan involves far too much radiation and isn't particularly advisable.

Honestly, there are moments when I find myself wondering if I’ve wandered onto a movie set or stumbled into some sort of dark comedy. Seriously? A woman suffering from melanoma, complaining of daily headaches, and this physician refuses to order a CT scan under the guise that the radiation is just too dangerous? Part of me still wants to believe it was a hidden camera prank, because the alternative—that this is genuine medical advice—is almost too much to stomach. It is frankly embarrassing that an institution of this caliber is considered a premier referral center.

What has been your experience? Is it possible for the specialists at the melanoma center over in Beverly Hills to actually issue referrals for these types of scans, or is that off the table? In my estimation, the attitude toward patients is nothing short of appalling.

Grace Flores14 said:My mom passed away a few days ago too. It was brutal—the pain we couldn't manage with patches, the hallucinations, the rambling... she literally wasted away until there was nothing left but bone and skin. I'm not exaggerating; she probably didn't weigh more than 70 pounds at the end. Even those extreme anorexia photos you see online look healthy compared to this. 😢 I won't forget any of it; that final stretch was just devastating. Honestly, I could write a book on how much chaos happened in such a short window. I need some time to process everything and find my footing. Our lives have flipped completely upside down. It’s just the three of us kids now, and a dad who has never once washed a single dirty dish in his life.

Maybe this belongs in the other thread for stories like this...

On another note, I’d love to get involved with the Association, but does it even make sense? You mentioned needing activists rather than just "passive" supporters, and I’ve only just turned eighteen 🙄. I'm not exactly an extrovert (not really 😁) and we haven't had enough bad experiences with the healthcare system to fuel a crusade. What else is there to do? Then again, being from New York City might be an advantage.
How do I actually sign up? Do I go through www.zanovidan.hr and then what?

Honey, I am so sorry. I know exactly what you're going through and what's coming next. I can still hear her cries and sighs even though it's been seven months. The emptiness is massive... hang in there! 😢

I suppose there is some small measure of solace to be found in the knowledge that they are no longer in pain.

A primary care physician can write a referral for a standard head CT, so maybe you could just ask her for one. I know radiation from a CT scan is a concern, but honestly, refusing to give a referral to someone battling melanoma just doesn't seem humane. As for PET/CT scans, I'm actually not sure which specialists handle those referrals. An MRI might be a better option since there's less radiation involved and the imaging is generally more precise. Usually, though, doctors start with a head CT because it's more cost-effective, and then they might move to an MRI if the results show it's necessary.

On another note, I caught a news report on TV yesterday saying that with this new budget reallocation, healthcare funding is being slashed by about $45 million. They’re trying to convince us that nobody will lose out, but I don't know... they even cut supplemental benefits for the unemployed, so it makes sense why getting referrals is becoming such a struggle lately. Who knows what they'll target next? I just really hope this whole administration is gone by next November. Maybe then things will finally start looking up.

As long as we remain under the thumb of psychopaths in power—a situation that has persisted for years now—there is simply no hope for things to improve.

Can I get these markers tested privately at any lab?

Also, is there a required waiting period after my last test? I assume this isn't as invasive as something like a scintigraphy, right?

Hannah Newman43 said:Can I just go get my tumor markers tested privately at any lab?

And is there a mandatory waiting period since my last test? I'm assuming this isn't harmful like getting a scintigraphy or something similar?

Yeah, you can totally get those markers checked at private labs like Quest Diagnostics, and it’s not harmful at all.

Hi,

We have about 40 cartons left over Ensure and ProstateScan (roughly 20 of each), and we'd love to give them away. If anyone could use them, just let me know and we can find a spot somewhere in town to meet up and drop them off..

Ivanić, I know you’re pretty active over on the 'Zanovidan' forum too, so let me know if you think I should post this there as well?

Best, and wishing everyone lots of strength and luck...

Hey everyone, sending good vibes to this thread. My mom was just diagnosed with Stage IV small cell lung cancer a few days ago. The only play they have right now is chemo.
I’m freaking out, honestly—and even though I’m trying to stay upbeat, my gut is telling me things aren't looking great. She’s 63, a smoker, and deals with asthma too. The one silver lining is that getting decent care at the local Mayo Clinic isn't an issue, which helps. Not that I'm dumping all my anxiety on her, obviously. She headed over to the hospital today for some urine tests—just making sure her kidneys can actually handle the hit from the chemo.

cosmicridge5 said:Hey everyone,

We have about 40 cartons left over of Allstate and Procter & Gamble (roughly 20 of each). We want to give them away for free, so if anyone could actually use them, please reach out. We can meet up somewhere in town so you can pick them up..

Angela Wright, I know you're pretty active over on the 'Unknown' forum too, so let me know if you think I should drop a post there as well?

Best, and wishing everyone strength and luck...

Just put it in the classifieds section. Our traffic is huge right now. Don't be shocked if you get messages from people in Mexico or Canada, since they tend to buy this stuff up more often.

Amy Richardson3 said:Sending good vibes to everyone in this thread. My mom was just diagnosed with Stage IV small cell lung cancer a few days ago. The only option they’ve given her is chemotherapy.
I'm incredibly worried, and even though I'm trying my best to stay optimistic, my gut tells me she might not make it. She's 63, a smoker, and deals with asthma. On the bright side, getting access to decent hospitals isn't an issue here, which is a relief. I'm doing my best not to project all my anxiety onto her, though. Today she went over to Mayo Clinic for some urine clearance tests to check her kidney function so they can figure out how much chemo her body can actually handle.

Check out the other topic on this forum about lung cancer. There's a really inspiring story there about a guy living in Australia who responded incredibly well to treatment, even when it looked like he was losing the fight. His wife is the one posting; you can find his updates toward the end of that thread.

thanks, already read that a few days ago

Does anyone happen to have a contact number for the Sail association or the New Day group?
Thanks in advance

velvettinker72 said:I urgently need a contact number for the Sail and New Day associations.
Thanks in advance

Just click my signature and you'll be directed straight to the New Day site. Otherwise, a quick Google search will pull us right up.😉
Feel free to shoot me a DM, too. I’m the secretary for the association.

Angela Wright, thanks!
Just sent you a DM!

I started my day feeling absolutely miserable—just totally down in the dumps and feeling pretty pathetic, honestly. But, thanks to all the back-and-forth on this board and over at the New Day association forum, things are looking up. Dr. Jasna Radić, Angela Wright, and Sandra Karabatić really helped me find that spark of hope again, helping me believe that healing is actually possible and that things might finally start moving in the right direction. I’m not even exaggerating when I say I owe them everything 🙂!👋

I’m honestly at a loss for where to even start asking this... maybe someone in this group might actually have an answer for me, though I know how unpredictable this stuff can be. Does anyone know how long it usually takes to get those PET/CT scan results back? Like, are we talking about getting them the very next day, or does it all happen on the same day as the procedure itself... or is it something else entirely? 🙏

Jesse Sanchez40 said:I'm honestly not even sure where else to turn... maybe someone here can give me some insight. Does anyone know how long it actually takes to get PET/CT scan results back? Is it usually the next day, or can you sometimes get them the same day... or what? 🙏

My mom finally got her results back today after an eleven-day wait—the test was actually performed on the 3rd.

Honestly, I’m actually starting to regret ever clicking on this thread.😢

Can anyone recommend a solid oncologist in San Francisco? We're looking into lymphoma, but nothing is set in stone yet—just waiting on biopsy results from Washington, D.C.