Support for families dealing with cancer and other serious illnesses (Part II)

Rachel Williams said:Dear Angela Wright, I don't post much here, but I read this place religiously. You actually shared something similar with someone else once before, and I remember reading it back when my mom was first diagnosed with Stage IV metastatic lung adenocarcinoma two years ago. It was incredibly hard to wrap my head around and actually put into practice at first, but now, more than two years later, I can honestly say this is some of the best advice anyone can give in these situations. Thank you for writing all this out for us and answering our questions, even though this whole thing became your personal reality a long time ago.

Thank you. You have no idea how much that means to me. I’m still trying to find meaning in everything my mother went through, no matter how strange or senseless it might seem to others. I suppose I’ll keep doing that until the day I die. I jump in and out of all sorts of things in life—most interests fade fast—but this thread I started nearly ten years ago is probably the most constant thing I have left. If nothing else, I stick with it out of pure habit.
If I’ve managed to ease even a fraction of the pain that tore me apart, then it means the world to me.

neoncyclist792 said:It’s been about three or four months since I was on here looking for advice for my father-in-law. Sadly, he passed away just two months after his diagnosis. Now, here I am again, unfortunately too late for any meaningful advice. I’m sitting by my sister's bedside right now, just watching her breathe. Her diagnosis came in a month ago—bronchial cancer with metastases in the brain, lungs, and bones. She’s been at Rockefeller for about 20 days now. At first, she had periods where she was awake for an hour or two, but for the last three days, she’s been sleeping constantly; they’re ramping up the morphine. They say she isn't in pain, that her heart is strong and she’s fighting, but she's struggling. Today she ran a fever, and her hands have started to swell a bit. The doctors won't give us a prognosis. How much longer can someone stay in this state? It is absolutely devastating to watch someone so young go through this.

I am so incredibly sorry. 😢
She’s facing one of the most brutal diagnoses out there, mainly because by the time it’s actually detected, it has usually already sprinted ahead. People sometimes call it the "100-day cancer" because that’s often the average survival window.
She is definitely in the terminal phase, and she won't be able to hold on like this for much longer. We’re talking weeks, maybe even days. Eventually, the light just goes out. Just be there for her as much as humanly possible. Talk to her about the beautiful memories you all shared. Tell her how much she means to you, tell her you love her, and reassure her that everything is okay—tell her she’ll be okay so she doesn't have to be afraid.
I am wishing peace to you, to her, and to everyone surrounding her.

She didn't wake up this morning

I feel for you.

neoncyclist792 said:She didn't wake up this morning.

I am so incredibly sorry. Hang in there and stay strong.

My Dad passed away on August 3rd... it feels like an eternity ago, and I’m sitting here crying my eyes out just typing this. I couldn't do anything to help him—not with the morphine, nor the Tramal, nor even when the paramedics arrived. If I can somehow offer some advice to others, I'm here, because I was right by his side through those final months. And thank you, Angela Wright, for starting these threads; once I realized we were losing him, I don't know if I would have made it through without her support... and it was truly awful. May God watch over us in times like these.

neoncyclist792 said:She didn't wake up this morning.

Please accept my condolences...

They wouldn't operate on my Dad... three massive lesions on his liver... not even Ms. Jadrijevic would budge. He cried—he was terrified, just like a little kid—and he hadn't even retired yet... in the end, that "inoperable" diagnosis turned out to be the best thing. He lived for another three years, enjoying life immensely thanks to the Johanna Budwig diet, even though he used to be obsessed with meat and cooked foods. He went all in on life and got three years in return; he wanted more, but the illness wouldn't allow it. I’ll remember him as a fighter—as a man who loved watching sunsets, a good Western, and the sounds of a great sirtaki...

My dear friends, I previously mentioned that my Dad is battling an inoperable Glioblastoma. About ten days ago, he underwent mapping so he could begin chemotherapy and radiation. So, the mapping is complete, and we were told we just have to wait for him to be called in for treatment.
It has been ten days now, and I went down to the Mayo Clinic to ask why things haven't moved forward, only to be told that the wait for an appointment is SIX TO EIGHT WEEKS?!
Is this even possible? A friend's mother was called in for her treatment after only one week. This sounds absolutely insane; a brain tumor like this simply cannot wait.
What am I supposed to do? I broke down crying right there and begged them to speed things up, but all they would tell me was that we should check back next week.
The whole situation is incredibly stressful. Are they looking for money, or what is going on here?

Susan Barnes82 said:They wouldn't even operate on my dad... three massive lesions on his liver... not even Mr. Jadrijevic could move them to surgery. He wept; he was terrified, just like a little child. He hadn't even reached retirement yet. In the end, that "inoperable" diagnosis turned out to be a blessing in disguise. Because we didn't go down that surgical route, he lived for three more incredible years following the Johanna Budwig diet—even though he used to absolutely crave meat and cooked foods. He went all in on life, and in return, he got those three years. He wanted more, but the illness wouldn't allow it. I will always remember him as a fighter, as a man who found pure joy in watching sunsets, watching a good Western, or listening to the sounds of a great syrtaki.

Tyler Rogers3, this is so incredibly hard to read. 😢
Remember him often, and keep those memories close. My own father became just like a little boy during his illness, too. Watching them become so helpless is truly, truly heartbreaking.

Did he undergo chemo and radiation?

Susan Barnes82 said:They wouldn't operate on my Dad... three massive lesions on the liver... not even Ms. Jadrijevic could change their minds. He cried; he was terrified, just like a little kid. He hadn't even retired yet. In the end, that "inoperable" diagnosis turned out to be a blessing in disguise. He lived for three more years with incredible quality by following the Johanna Budwig diet, even though he used to live for meat and cooked food. He bet everything on life and got three years in return. He wanted more, but the disease wouldn't allow it. I’ll remember him as a fighter—as a man who truly savored a sunset, a good Western, or the sound of a great sirtaki.

I am so sorry, Tyler Rogers3. What you wrote is exactly what haunts me. My mother lived a short life, but she lived it well. There are people who crawl to 100 years old only to die alone and forgotten, never having actually *seen* a sunset or truly *heard* music, even if they spent a thousand days watching and listening.
May they rest in peace in that better place we all hope for.
And you? You will be okay, even if things are never the same again. You will find strength. Let him go with peace in your heart.

Could someone please tell me how long your loved ones had to wait for radiation and chemo to actually start? Here at the Mayo Clinic, they're telling me it could be anywhere from four to six weeks, but I honestly don't know if my Dad has that much time to spare; he seems to be getting worse with every passing day. 😢

Grace Ross20 said:Can someone please tell me how long your loved ones had to wait for radiation and chemo? Here at the Mayo Clinic, they’re telling me four to six weeks, but I honestly don't know if my Dad has that kind of time. He's getting worse every single day. 😢

Sorry, I can't seem to track down your first post right now... Has Dad had surgery yet? If he has, you really need to wait at least a month between the operation and starting radiation.
Unfortunately, waiting around for radiation is just the reality of the system—it’s been this way for decades. They keep feeding us this line about "triage" where patients like your Dad are supposed to be prioritized, but you should realistically expect him to get his turn within a month. Even so, don't just sit there. You need to consult with his oncologist immediately to see if they should jump straight to Temodar if the wait for radiation drags on. The thing is, Temodar works best when it's paired with radiation. You have to be assertive here. Try being polite first—talk to the clinic director—but if that doesn't work, go straight to the doctor. Tell them you’re going to the media because they haven't taken action. Remind them that we've seen a massive revolution in cancer treatment over the last 20 years, and they shouldn't just sit back and watch people get written off because they failed to start treatment on time.
In that case, I'll reach out and hit you with more details once I have them.

Dad hasn't undergone surgery because the tumor is in such an awkward spot, which is why I'm finding it hard to wrap my head around how it's been over a month since the Glioblastoma diagnosis and he still hasn't received any real medical intervention :/

Grace Ross20 said:Dad hasn't had surgery because the tumor is in a tricky spot, so I honestly don't get why it's been over a month since the Glioblastoma was diagnosed and he still hasn't received any actual help :/

You aren't starting a revolution here. His situation is urgent. Talk to the oncologist first and ask them how to push for more aggressive action and what the deal is with the Temodar I mentioned earlier.
Who performed the surgical assessment and where?

By the way, look up proton beam therapy. There’s a clinic affiliated with the Technical University of Munich that actually uses this equipment and performs the treatment. I’ve shared their contact info on the forum a few times before, but I’ve lost track of those specific posts. Just try searching online or digging through this thread and the Glioblastoma thread.
Honestly, if you aren't using those more advanced methods, treating Glioblastoma here feels incredibly basic—especially when surgery isn't an option. It basically boils down to a desperate attempt to slow things down for maybe six months at most.
I’m telling you this straight, no sugarcoating.
You need to go looking for help elsewhere—look into specialized centers and clinical trials.
If you need a hand with the research or searching online, just let me know.

Henry performed the assessment over at the Mayo Clinic, where he was assigned to Dr. Mishir Krpan. She mentioned that she’s already signed off on everything and the medication is ready, but things have hit a complete standstill over in Radiology.
I feel like I'm constantly being brushed off. They just keep telling me there's a queue of over 90 people ahead of us, including children. Honestly, that sounds terrifying. While I have nothing but respect for everyone else's struggles, I find it hard to believe there are truly that many urgent cases comparable to my Dad's situation. Most of those patients have already had surgery and are simply waiting for radiation, whereas he hasn't even begun his treatment yet.

Thanks for the tip; I'll definitely look into that clinic in Germany.

Grace Ross20 said:Henry did the assessment at the Mayo Clinic. He was assigned to Dr. Mishir Krpan, who claims she signed off on everything and the medication is ready, but things have stalled at the radiology department.
They keep blowing me off, telling me there are over 90 people ahead of us and that children are waiting too. Honestly, that sounds terrifying. I respect everyone else's struggles, but I highly doubt there are actually that many emergencies equal to my Dad's situation right now. Most of those people have already had surgery and are just waiting for radiation, but he hasn't even started treatment yet.

Thanks, I’m going to look into that clinic in Germany.

It’s the truth—there’s a chronic shortage of equipment, and the stuff they do have breaks down constantly.
The real problem is that hundreds of people are suffering and nothing is being done about it! It’s been like this for years!

Like I said before, if you want anything concrete, you’re going to have to look outside the country.

Grace Ross20 said:Henry did the assessment at the Mayo Clinic, and his doctor, Mishir Krpan, said she signed off on everything and the medication is ready, but things got stuck over in radiology.
They keep brushing me off, telling me there are over 90 people ahead of us and that kids are waiting too. Honestly, that sounds terrifying. I respect everyone else's struggle, but I really doubt there are currently that many urgent cases like my Dad's. Most of those people have already had surgery and are just waiting for radiation, but he hasn't even started treatment yet.

Thanks, I'm going to look into that clinic in Germany.

My husband went through surgery and then waited over seven weeks (even though they told me it’s proven to be best to start radiation by week five after surgery). In your Dad's case, you need to move now! I was practically living at the Mayo Clinic almost every single day.
I also suggest taking those MRI scans to another neurosurgeon for a second opinion. For instance, maybe try Chudy at Dubrava Hospital. He operated on my husband, and he did an amazing job—zero complications. At the Mayo Clinic, they actually told me the tumor was inoperable (Prof. Paladino and Henry, who handled his stereotactic surgery). They literally told us, "We're sorry, please find an oncologist as soon as possible."

The proton therapy center you're looking for is: Rinecker proton therapy center Munich,
www.rptc.de
tel. +49(0)89660680 or +498972467241 Dr. Saric, he speaks American English fluently. I can't find an email address specifically, but it's on their site. As far as I remember, there's a form on the website you fill out and email them, then send copies of the MRI and translated medical history via mail. There’s also a center in Milan, but I don't have any contacts there.
Sending you so much strength.

And definitely keep reading this thread and the Glioblastoma thread. I learned almost everything I know here, and it helped me immensely. So, Angela Wright, thank you from the bottom of my heart... and thanks to everyone else
who stayed strong enough to help.
Dr. Mishir is wonderful. At least, that was my experience.

Thank you so much.
Could you please tell me if your husband is also dealing with Glioblastoma or something else? How is he doing lately, and what stage of treatment is he currently in?
Is it possible for my Dad to undergo radiation and chemo first, and then move on to surgery?
I am definitely going to seek a second opinion next week as soon as I get my hands on the documentation they took at the Radiology department; I just can't get away this week because I'm working from 9 to 8 every single day.
That sounds absolutely awful...
I would love to actually sit down and talk to the doctors about all of this, but nobody seems to have any time. Everyone is incredibly dismissive. One nurse even yelled at me so harshly that I had to go hide in the restroom just to cry.
And all I did was ask her if she knew where the copier was so I could make copies of my Dad's test results... honestly, it was disgusting.