Support resources for families dealing with cancer and other serious illnesses

Thanks everyone 😢

The day before he passed, we actually spent some time walking him around his unit. He’d been mostly bedridden for the last two weeks after taking a fall on his way to the restroom, so the nurses had put up the side rails to make sure he wouldn't hurt himself again. With the doctor's and nurses' permission, we made sure to get him up and moving whenever we visited. On Monday, after one of our walks, he just complained about how much his muscles ached from being so still... so I gave him a little massage and joked around with him, just trying to keep him from getting too used to being stuck in bed. It's incredibly hard right now. I know it'll get easier eventually, but first, I just have to wrap my head around the fact that he's really gone. We realized today that they forgot to return his gown to us, which was just one more thing... honestly, one of the hardest moments was when Dad brought his belongings

Elizabeth Davis: I want to wish your grandfather all the best for a speedy recovery; I truly know how you feel

Angela Grant22 said:Thanks, everyone. 😢

The day before he passed, we were walking him around the ward. He’d been stuck in bed most of the last two weeks after taking a nasty fall on his way to the bathroom, so the nurses had put the side rails up to keep him safe. With the doctor and nurses giving us the okay, we’d walk him around whenever we visited. On Monday, right after a walk, he just complained about how much his muscles ached from not moving enough. I gave him a little massage and joked around with him, just trying not to let him get too comfortable. It’s incredibly hard. I know it’ll get easier eventually, but first, I just have to wrap my head around the fact that he’s gone. Today, we realized they forgot to give us his gown back. One of the worst moments was when my dad brought over all his stuff.

I’m so sorry you’re going through this. I went through something similar with my grandma, so I get it.
She’d been feeling off for days, and I remember visiting her that specific day. She wasn't doing great, but we talked, and I just headed home like everything was normal. Then that night she took a turn for the worse—emergency services messed something up (details don't matter)—and she ended up in the hospital. By the next day, she was just gone.
She lived with my aunt and grandpa, and the phone was always right by her bed, so she’d always pick up. It took me months, maybe even a year, to stop that weird, sinking feeling of being caught off guard when she wouldn't answer. Even though I knew she was gone, that subconscious part of me was still just waiting for her to pick up the phone one day.😢.

I don't really have any advice for you because, honestly, you just have to sit with the grief and let it happen. The only thing I’d suggest is that if it gets too heavy to carry, don't be afraid to talk to a professional. I don't necessarily mean someone to prescribe meds—though honestly, those aren't a bad idea for the first week or two—but someone for actual guidance and comfort. Maybe a support group... or just remember you always have this forum. Between the Psychology sub and this thread here, 🙂.
I also think getting some movement in might help clear your head.
Just anything that helps you feel even a tiny bit better for a moment.

Elizabeth Davis: wishing your grandpa all the best and a speedy recovery, I know how you feel.

Thanks. Honestly, my biggest fear is that he’ll actually "pass away in transit." I hate that phrase. 😢

For three whole months, I went to bed every single night terrified that we’d get that dreaded phone call saying he was gone. If nothing else, the very first thing I’d do when I woke up was call him, just to hear his voice, ask how he was doing, and try to squeeze in a visit a few hours later. The night before he passed, he developed a fever in the middle of the night. Since he’d had fevers like that before, we just assumed it was because he was getting so excited about finally coming home. But when I called him the next morning, he answered with such a struggle... he could barely even say "hello." He couldn't say anything else. Mom and Dad had headed to the hospital, and when they got back, Dad told us things had taken a turn for the worse. He was still himself—just a bit more tired, a bit more ill—but he told Grandpa that we’d talk later, and that he’d just give us a quick ring when he could so we wouldn't have to worry. He didn't actually call us, though; we were the ones calling him, but he just wasn't answering anyone. It’s the heaviest feeling in the world, thinking that maybe he really did want to reach out to us, but he just couldn't 😢

Elizabeth Davis: please don't be afraid, everything is going to be alright 🙂

That sounds incredibly heavy. I’m so sorry, Angela Grant22. Honestly, I’m at a loss for words because I hate using those empty clichés like "he's in a better place now" —I know from experience that doesn't actually help anyone feel better.
Hang in there and don't try to bottle up all that sadness.

And yeah, I hope things work out too, but honestly? I think I'm gonna need a triple dose of Helex just to make it through Monday. Regardless of how everything pans out. It's my first day on the job, and my grandpa is heading in for surgery at the same time. Felt pretty stupid asking for the day off right when I start, you know? But then again, I have zero clue how I'm supposed to pull myself together at a brand new job while dealing with all this.

I honestly don't even know where to begin... My mother has been battling cervical cancer for over two years now, but things have taken a massive turn for the worse in just the last few months. She spends more time in the hospital than she does at home lately. The doctors treat her like she’s some kind of football—they’ll keep her for a month and then just discharge her like everything is fine, when in reality, her condition is critical. There are phases where she doesn't even recognize anyone... her whole body just locks up and she starts seizing... it's devastating. Yesterday, they recommended we try Marof or Duga Resa... I'm completely lost on what to do. Watching her suffer like this is heartbreaking. What should we be doing, and what can we actually expect... 😕🤷

My grandfather is 83 years old. He was diagnosed with prostate cancer four years ago. He was originally treated with Androcur—which has since been discontinued—and they switched him over to Estracyt. About two months back, he suffered a hip fracture, which was unfortunately caused by cancer metastasis. Since then, he’s had significant issues with urination; the doctors couldn't get a catheter in due to the prostate blockage, so they had to perform a cystostomy. Looking at his discharge papers from two months ago, his creatinine was 115, urea was 8.4, and his PSA was sitting at 1050.00. He isn't in any pain, though his mobility is definitely limited because of that leg. The doctors here are incredibly tight-lipped—very little communication—so I'm honestly flying blind regarding what to expect next. If anyone has experience with this kind of situation, please let me know what the road ahead looks like and what the prognosis might be. Thanks.

wearytiger56 said:So, my grandfather is 83 now. He was diagnosed with prostate cancer about four years ago, and he’s been through the ringer with treatments—he was on Andrucom for a while, but they actually discontinued that and switched him over to Estracyt recently. Things took a pretty heavy turn two months back when he broke his hip, which turned out to be caused by a metastasis from the cancer. Since then, he's been having a nightmare with urination; the doctors couldn't even get a catheter in because of how enlarged the prostate is, so they ended up having to perform a cystostomy. Looking back at his discharge papers from two months ago, his creatinine was at 115, urea was 8.4, and his PSA was sitting at 1050.00. Honestly, he isn't in any physical pain, though he's obviously moving a lot slower now because of the leg situation. The doctors here are being incredibly tight-lipped about everything, so I'm basically flying blind and have no clue what we should be bracing for. If anyone here has dealt with something similar or knows more about how this typically plays out and what the prognosis looks like, I'd really appreciate some guidance. Thanks!

Honestly, looking at the forecast right now, things aren't looking too great. 😢 Given how old they are, what the diagnosis actually says, and everything we’ve seen clinically, I hate to be the one to say it, but things look pretty grim. Honestly, looking at the reality of the situation, modern medicine just doesn't have the tools to really step in and fix something this heavy right now. 😢
Coming soon. Probably. Then you start dealing with all sorts of bacterial infections kicking in—pneumonia, UTIs, and probably even pressure sores, not to mention the whole mess of potential inflammation around the cystostomy site...

When those pains start creeping up on you, the most important thing is to jump on it immediately before things get messy.

They really need to make sure they're getting enough proper nutrition—things like ProSure, NutrenFibre, or EnsurePlusAdvance—so you've gotta stay on top of that, along with keeping up with enough hydration too.
Just be there for him as much as you possibly can, you know? Make sure he actually feels that you give a damn and that you love him. Honestly, just showing up like that is about as much as any human being can do for someone else.

wearytiger56 said:My grandfather is 83. He was diagnosed with prostate cancer four years ago. He was originally treated with Andrucom, which has since been discontinued, and they switched him over to Estracyt. Two months ago, he suffered a hip fracture caused by cancer metastasis. Since then, he's had massive issues urinating; doctors couldn't even get a catheter in because his prostate is too obstructed, so they had to perform a cystostomy. According to his discharge papers from two months ago, his creatinine was 115 and urea was 8.4. His PSA is sitting at 1050.00. He isn't in pain, though his mobility is limited because of that leg. The doctors are being incredibly tight-lipped, so I'm completely in the dark about what to expect. If anyone knows more about this situation, please guide me on how things will proceed and what the prognosis looks like. Thanks!

I strongly suggest you reach out to Dr. Trnski over at Vinogradska. I had an aunt who dealt with prostate cancer and similar complications for 20 years, especially toward the end, and Dr. Trnski managed to pull him through successfully. He lived to be 94.

Ashley Smith54 said:I don't even know where to start... My mother has been battling cervical cancer for over two years now, but her condition has taken a massive turn for the worse just in the last few months. She spends more time in the hospital than she does at home. It feels like the doctors are treating her like a game of hot potato—they keep her for a month and then just discharge her like everything is fine, which is ridiculous because her situation is critical. There are phases where she doesn't recognize anyone at all, and her body just locks up in these intense spasms; there’s nothing left of her. Yesterday, we were told to look into things like Marof or Duga Resa. I'm completely lost on what to do... she's suffering so much. What should we be doing, and what am I supposed to expect? 😕🤷

What you've shared is incredibly vague. At the very least, transcribe her most recent discharge summary. What specific tests have they run? What kind of therapy has she undergone? Where is she being treated? How old is she?

Thanks a million for all the input and responses

Angela Wright said:Everything you wrote is incredibly vague. At least transcribe her last discharge summary. What kind of tests did they run? What therapy did she go through? Where is she being treated? How old is she?

So, here’s the deal: once the cervical cancer was confirmed, they refused surgery because it had spread too much. She just received 25 radiation sessions, which didn't do a thing... their diagnosis was basically palliative care. While she was staying at the hospital in the city, one kidney failed down to 20% function while the other was at maybe 70 or 80%, so they had to put catheters in both. She dealt with that for a few months, and then things were actually quiet for about a year without major complications... until the intense pain returned. Everyone attributed it to the tumor, so she was put on a morphine patch with a dosage of over 100mg. However, things took a turn for the worse when she ended up needing emergency bowel surgery. Now she has an ostomy bag on her abdomen... but there were complications, leading to a reoperation, and after that, everything just spiraled downhill. She’s bedridden now and lost at least 10 pounds in a single month. Today, they had to put a catheter back in her kidney. She’s just... losing herself. She's unrecognizable; she doesn't even look like the same person, and her eyes look like something out of a horror movie. The doctors aren't giving us much to go on, either. All they say is that things aren't looking good. Today, one doctor actually suggested a clinic in a nearby suburb... and she’s only 48 years old...

God, I honestly can’t wrap my head around the fact that it was considered inoperable just two years ago. Based on what you’re describing now, things have clearly taken a turn for the worst—we're looking at terminal stage with widespread metastasis, and there's a high probability it's hit the brain too. I am so incredibly sorry. If you aren't in a position to provide hospice care at home or find a spot in a private facility, your only real options are going to be the Mayo Clinic or Johns Hopkins 😢 Just try to find whatever strength and grit you need to hang in there until the end; stay by her side as much as humanly possible and shower her with love. I don't know if that offers any comfort right now, but given how she's doing, we're likely looking at the end in a matter of days. If I were in your shoes, I’d do absolutely everything in my power to ensure she spends her final moments at home, surrounded by nothing but love and care. It'll give you so much more peace of mind afterward.

Hi everyone... So, here’s the situation. My mom has been battling a brain tumor for about four years now—I believe the diagnosis is D.33.0. She already went through surgeries back in 2011 and 2012 at Mayo Clinic. Last April, the surgeon who operated on her twice told us she wasn't a candidate for more surgery. He recommended radiation first, and if that doesn't work, then chemo. However, we sought a second opinion at Johns Hopkins (which we managed to get through some connections), and they actually suggested surgery, even though they noted her condition wasn't an immediate emergency. She ended up turning that down because she was feeling fine—no symptoms at all—so she decided to wait a little longer and didn't start any treatment.
As of right now, she’s been dealing with weakness in her left arm and leg for a month. She’s taking injections to reduce the brain swelling, but honestly, it hasn't helped her one bit. Despite all our connections, nobody seems willing to admit her for inpatient care. My question is: how can anyone just send a 41-year-old woman home to suffer and wait a year for an MRI?

Hey... I've been MIA for about four months now since my dad passed. It happened fast—just ten days once sepsis set in, despite everything the doctors tried to do. He was 62... (had colon cancer surgery back in July, then by September, things just spiraled despite him handling chemo well). A lot of you on this forum reached out with support... there's a massive void left behind, but my heart is full of pride and love for him. I just need to call out to him and I feel a little warmer inside; honestly, I still feel like he's guiding me through life and watching over me from somewhere up in the heavens...
On Saturday, I took my 90-year-old grandma to the hospital. She’s lived a long, good life (my dad's mom). She had this cough, and the doctors thought it was the start of asthma—makes sense at her age. Last September, her lung scans were totally clear. We did them again on Saturday, and the results showed her lungs are full of metastases. She didn't even complain. They were supposed to run more tests today to confirm if it's definitely metastases or something else... but she ended up being put on life support. I know how this goes. If it's time for her to go, let her go without pain... that's a blessing. To everyone else here fighting cancer... fight with everything you've got. Win the battle. And if you lose the battle, you still win... because your loved ones have moved on to a place where there's no pain, no needles, no IVs, no shots... no vomiting or cramps. I'll keep reading your posts, and I'm rooting for all of you to come out on top.......

restlessowl3 said:Hi everyone... So, my mother has been battling a brain tumor for four years now—I believe the diagnosis is D.33.0. She underwent surgery back in 2011 and 2012 at Mayo Clinic. Last April, the surgeon who operated on her twice stated that she isn't a candidate for further surgery; he recommended radiation, followed by chemo if that fails. However—seeking a second opinion—we went to Johns Hopkins through a connection, where they actually suggested surgery, even though they noted it wasn't an emergency. She turned that down because she was feeling fine—no symptoms at all—and decided to wait a bit longer without starting any treatment.
Currently, she's dealing with weakness in her left arm and leg which has lasted a month; she's on injections to reduce brain swelling, but there’s been no improvement whatsoever. Despite our connections, nobody seems willing to admit her for inpatient care. My question is this: how can anyone send a 41-year-old woman home to suffer while waiting a full year for an MRI?

🙂
I am not sure how, but anything is possible 😢
When were you scheduled for your MRI so late?
St. Jude's in Chicago takes referrals—you should try calling them there. When I called, the wait was only three weeks.

driftingsurfer14 said:🙂
I don't know how, but there’s just too much going on 😢
Where did you guys get scheduled for an MRI so late?
St. Jude’s over in Denver takes referrals, so maybe try giving them a call. When I called last time, the wait was three weeks.

I gave them a ring, but they've got a four-month backlog, so we're just going private. It honestly baffles me that nobody seems to want to take us in.

I am writing once again regarding my mother's situation. She underwent surgery a little over a year ago and handled her chemotherapy quite well. Her initial markers were soaring above 3000, but they have since dropped to 24. We explored various alternatives alongside standard medicine; the fluid in her lungs cleared up, and she recently saw a gynecologist who provided a diagnosis. He noted that there had previously been metastases in the uterus and the outlook was grim, yet now those are gone, which has left him puzzled. Her primary oncologist—who is pleased with the recent results—reviewed the CT scan and suggested a laparoscopic removal of a 31x16 mm mass on the left ovary. However, a second oncologist (the first was away on vacation) argued that if the chemo is working, it might be wiser to leave it alone. A few days ago, she had a PET-CT performed in Miami, where the recommendation was that if the tissue is necrotic, it should be removed, but if it is active, we should stick to the chemo.
Who is one supposed to listen to in this scenario?
Also, if it isn't too much trouble, could someone please review the PET-CT results and provide a brief summary?

http://www.sendspace.com/file/027qso

Thank you.

restlessowl3 said:I gave them a call—there is a four-month wait, so we are opting for private care instead. It is quite surprising, though, that they seem unwilling to accept patients anywhere.

Well, they filled up almost instantly—I spoke with them around January 10th. 😢
My father is sticking to outpatient treatment for now, even though getting him admitted to the hospital would speed up his tests. I suppose I view it this way—it isn't as difficult for him as it would be for those who actually have to stay overnight—so I actually prefer it this way.

wearytiger56 said:My grandfather is 83. He was diagnosed with prostate cancer four years ago. He was originally on Andrucom, but they stopped that and switched him over to Estracyt. About two months back, he broke his hip—which turned out to be a metastasis from the cancer. Since then, he’s had a really hard time urinating; the doctors couldn't even get a catheter in because of how enlarged the prostate is, so they had to perform a cystostomy. Looking at his discharge papers from two months ago, his creatinine was 115 and urea was 8.4. His PSA is sitting at 1050.00. He isn't in pain, just moving a bit slower because of that leg. The doctors aren't saying much at all, so I'm honestly lost on what to expect. If anyone knows more about this process or what the prognosis looks like, please help. Thank you!

Unfortunately, speaking from my own experience, the prognosis isn't great. It's such a heavy thing to talk about, but sometimes it's better to just know the truth. I actually lost my father earlier this year to this exact same disease. They diagnosed him about two and a half years ago. If there is anything at all you want to ask, feel free to send me a private message.

driftingsurfer14 said:Wow, they filled up fast. I actually spoke with them around 10:00 AM. 😢
My dad is just doing outpatient treatment for now, even though getting those tests done would be way faster if he were actually admitted to the hospital. I guess I look at it this way: it’s not quite as rough on him as it is for the people stuck in a hospital bed, so I actually prefer it this way.

It might sound terrible, but honestly, I’d feel more secure knowing my mom was in the hospital. Watching her get worse every single day while I stand here feeling completely helpless is just hard.