Support resources for families dealing with cancer and other serious illnesses

Hey there!
slyseal28, my very first round of chemo—way back in 1999—was Adriamycin, and man, it left me with some pretty nasty cardiac issues (basically complications with my thoracic organs). But the absolute worst part was how bad my results were after the 6+2 cycles, which forced me straight into a second line of treatment with Taxol. I’m only mentioning this because I decided to go back and dig through my old journals from the start of the war... and let me tell you, reading my own words... god, I don't know how I felt like someone had just sucked every ounce of strength out of me through a straw. It honestly felt like the bed was the only place I could find any peace away from the nausea and the pain. Fast forward nearly ten years later, and yeah, I still deal with thoracic issues (metastatic changes in the lungs), basically facing the exact same situation you are now... When I got my recurrence diagnosis last year, my specialist Radiologist told me point-blank, "...sell everything you own, try to find help in Stockholm, Paris, or even the US, because at this rate, you've only got about four months..." I mean, what can I even say? When I walked out of the hospital, I couldn't even find my car in the parking lot... But look, I'm still here, doing relatively well, and I fully intend to stay that way. I SWEAR that you and Pigeon have enough strength to pull yourselves out of this current bottomless pit... PLEASE, I am begging you, always get a second opinion for every single radiology scan because, in my experience, it is absolutely vital...!!!! If I rambled or got anything wrong, I'm sorry—it's just that I'm feeling a massive wave of emotions right now seeing what you guys are going through...!!
THANKS TO EVERYONE FOR THE SUPPORT
Grace Fowler

Hang in there, stay strong, and keep fighting. We're all standing right here with you. 🙂

Are you kidding me!!!😠slyseal28, look, we’re all hitting the beach together next year and everything is going to be just fine!!! This loser does nothing but post clips. What an absolute coward🙂

Grace Fowler, I’d smash my head against a rock for you😉

slyseal28 said:Dear Grace Fowler, sending you a huge hug!

Things have taken a turn for the worse here... significantly worse than we had ever anticipated...

His blood work remains relatively stable (leukocytes are at 8.9 today, though his erythrocytes, hemoglobin, and hematocrit levels are low, and liver enzymes are elevated as expected), and following the second round of Gemzar, we dealt with some minor fever issues, which we managed to control using a Voltaren suppository. However, over the last two days, his cough has intensified to such an irritating degree that he ends up vomiting everything he eats. He didn't sleep a wink last night because of it, so we headed to a private clinic, Sun, this morning to get a chest X-ray and a heart scan. To put it bluntly, the results are grim. The Radiologist looked at me and said, "As an old doctor, I have to tell you first that I am incredibly sorry." I nearly collapsed right then and there... It was a mercy that the Pigeon was waiting outside and didn't overhear that sentence. The Radiologist believes pneumonia has set in... and the worst part is, the Pigeon is already on antibiotics...
Afterward, I took him to the hospital, where he was admitted... I spoke with the physician, and she actually believes it isn't pneumonia; she noted that when comparing the previous scans to today's, nothing significant had changed. Instead, she suspects these are side effects from that first line of chemotherapy—that unfortunate Adriamycin, which is known for its cardiotoxicity...

We also had a cardiac ultrasound yesterday, and our cardiologist gave us a brief, sobering update regarding changes to the heart valve... We should receive the full report and explanation on Monday. Regardless, the situation is dire...

He has been weak all week, tiring out incredibly quickly... and struggling quite terribly to breathe...

What haunts me most is how this third line of chemo is affecting him... what if we are forced to stop... If his heart is beginning to fail, then what exactly are we left with??? Ugh... Damn this sarcoma! I hate it with every fiber of my being!

Is it really that bad?😢 I truly hope this is just a temporary setback, that all these inflammations will pass, that the hospital can facilitate a recovery, and that they won't be forced to discontinue the treatments. It is so difficult for me to read about how even the strongest fighters among you are struggling; it feels profoundly unfair that this bastard might win, and we need to find a way to overcome it rather than just hating it! Things have to start looking up... 🙏 Stay strong; you must carry on with the same fighting spirit through the sheer force of love and will, no matter how weak you feel! Kisses

Grace Fowler said:Greetings!
To all the fighters out there, my very first line of chemo back in 1999 involved Adriamycin, which left me with some pretty grim cardiology results—specifically complications involving the thoracic organs... and what was even worse was how poorly everything looked after the initial 6+2 rounds, yet I still pushed forward with a second line using Taxol. I’m telling you all this because I decided to dig through my old journals dating all the way back to the start of the war... and quoting myself here... goodness, how is it possible to feel as though someone has simply sucked every ounce of strength out of me through a straw? It feels as if the bed is the only place where I can find any peace away from the nausea and the pain... But here I am, nearly ten years later, dealing with actual thoracic issues—metastatic changes in the lungs—and facing a situation almost identical to yours... In fact, when the recurrence was diagnosed last year, the specialist Radiologist told me quite bluntly, "...sell everything you own; try to seek help in Stockholm, Paris, or the US, because at this rate, you have about four months left..." I don't know what to tell you, but when I walked out of the hospital, I couldn't even find my car in the parking lot... Yet, I am still here, doing relatively well, and I fully intend to stay that way. I swear that both you and the Pigeon have enough strength to pull yourselves out of this seemingly bottomless pit... Please, I implore you, always seek a second opinion for every radiology report, as I believe that is absolutely vital... If I have misspoken in any way, please forgive me, as I am currently being washed over by a flood of conflicting emotions regarding the situation you are all facing...!!
THANK YOU ALL FOR THE SUPPORT
Grace

I truly admire the strength and power behind your words! There is nothing else I can do to help with your nausea except say that I believe you will once again prove who the warrior and winner is, and who is merely a defeated penitent!

We’re still hanging in there... To be honest, this latest complication caught us a bit off guard. I had this naive hope that the heavy-duty side effects from the chemo would wait a little longer before hitting us...

The core issue is that his primary tumor is situated right next to the heart. That’s likely why we’re seeing these initial symptoms so early. It’s heartbreaking because this third line of chemotherapy is actually working, which means they’ll probably have to scale back the dosage now...

Yesterday, I reached out to a clinic here in the States for a second opinion (The University of Texas M. d. Anderson Cancer center). They are truly one of the premier sarcoma centers in the country. They got back to me today saying a specialist will call me in two days, and I’m holding onto the hope that they might offer a better path forward. The Pigeon needs at least two surgeries—one abdominal and one or two thoracic. The real hurdle is that thoracic one; it's something that simply can't be performed here locally.

When it comes to X-rays or any other diagnostic results, I make it a rule to always seek a second opinion. We had a CT scan of the chest, abdomen, and pelvis done on July 21st at Medikol, and their reading was completely incorrect... The same thing happened with today's X-ray of the heart and lungs. A Radiologist at the Sun clinic insists it's pneumonia, while the oncologists over at the Rib disagree entirely. Basically, you can't trust anything until it's been verified at least twice.

To all my dear friends here, thank you for the support. Sending hugs, strength, courage, and persistence to every single one of you. We don't give up!

slyseal28 said:We aren't backing down just yet... truth be told, this recent complication caught us somewhat off guard... I had somehow convinced myself that the actual side effects of the chemotherapy would wait a bit longer to manifest...

The fundamental issue here is that his primary tumor is situated right next to the heart, which is likely why these initial symptoms have already started to surface... It’s truly unfortunate because this third line of chemotherapy actually seems to be working, so they will probably have to scale back the dosage now...

Yesterday, I reached out to request a second opinion from The University of Texas M. d. Anderson Cancer center, which remains one of the premier sarcoma centers in the country... They got back to me today to let me know that their specialist plans to call within the next two days, and I am keeping my fingers crossed that they might offer us a viable path forward... As for the Pigeon, the plan involves at least two surgeries—one abdominal and either one or two thoracic procedures—but the issue lies with that thoracic surgery, as it simply isn't an option here in the States...

When it comes to getting a second opinion on X-rays or any medical findings, we make it a point to always consult at least two different experts. We had a CT scan performed on July 21st covering the chest, abdomen, and pelvis over at MedExpress, and they completely misread the results... A similar situation occurred today with the chest and lung X-rays. The Radiologist at the Sun clinic is insisting it’s pneumonia, yet the oncologists over at Mayo Clinic don't see it that way at all... I suppose everything simply must be verified at least twice...

To all my dear friends, thank you so much for the support. I am sending each and every one of you a warm hug, along with strength, courage, and persistence... There is no giving up...

If we can just push through these next two days until their specialist finally gives us a call... there is absolutely no giving up on this...

I honestly think Americans could actually step up and offer something useful here. They tend to get pretty intrigued by these kinds of seemingly impossible situations.
Greetings from Miami.😉

slyseal28, I'm keeping my fingers crossed for you—I truly believe everything is going to turn out okay. There's no giving up here, so let's just keep pushing forward!!!!

Grace Fowler, you really are such an inspiration...

Sending big kisses and greetings to everyone... Hang in there!!!

Greetings everyone. Sending huge amounts of support to slyseal28 and Grace Fowler. Please continue to stay just as optimistic as you have been so far.
It has been quite some time since my last update. My stepfather had been doing significantly better, but then he developed a bladder infection. His primary care physician prescribed certain antibiotics, but failed to consider that people with sensitive stomachs shouldn't be taking them—and he is currently dealing with adenocarcinoma. Long story short, he turned yellow and ended up spending three weeks in the hospital. He is back home now and feeling slightly improved. In his discharge papers, they recommended he use adult diapers and receive visits from a home health nurse. This is where we hit a wall. The substitute GP (his regular doctor is on vacation) refuses to authorize the insurance coverage for the diapers without a recommendation from a neurologist at the local health clinic, but there is no neurologist available until the end of the month and nobody is filling in for him. I keep insisting to my mother that the hospital’s recommendation should be sufficient and that a neurologist isn't necessary, but I am not entirely sure if my reasoning holds water. Furthermore, the head home health nurse refuses to sign off on the paperwork for regular care, claiming that the last time she saw him he was doing quite well—but that was two months ago. Does anyone have any advice on how to handle such nonsense without completely losing our minds?

Kimberly Green23 said:... In his discharge papers, they actually recommended diapers and home health nursing. But here’s where we hit a wall. His primary doctor is out on vacation, and the covering GP refuses to authorize the diaper coverage without a formal recommendation from a neurologist at the local clinic—but the neurologist won't be back until the end of the month, and we can't just wait around. I keep telling my mom that the hospital's recommendation should be more than enough and that dragging a neurologist into this is unnecessary, but honestly, am I even right? On top of that, the head nurse for the home health program is refusing to sign off on regular care because she claims he looked "pretty good" the last time she saw him—which was two months ago. Does anyone have advice on how to deal with these bureaucrats without completely losing my mind?

Unfortunately, a hospital recommendation for diapers isn't going to cut it; you really do need that specific neurologist's assessment.
As for the home health services, your primary doctor—and it doesn't matter if it's a covering physician—is supposed to send a nurse to evaluate the situation upon your request. From there, it goes to a board that decides whether or not to approve the services you're asking for.

Hope that helps.

Hi everyone,
It’s tough reading all this bad news, but I truly believe these are just temporary hurdles and things have to get better eventually.
Kimberly Green23, we went through the exact same nightmare with diapers. They bounced us from one specialist to another constantly; it felt like a game of telephone most of the time when it came to getting them approved. Basically, even for Dad, we couldn't get anything without a neurologist's recommendation. I don't have the specifics right now, but I'll ask Mom and let you know. I know the whole process takes forever because everything has to go through a Medicare commission first, and that drags on. Because of that, we ended up having to buy them ourselves.

We currently have some MultiForm extra Premium adult incontinence pads—12 packs of 30. If anyone needs them, shoot me a PM.

Kimberly Green23, I just wanted to jump in and say that your stepfather absolutely has a right to those diapers. You guys shouldn't just give up and end up paying for them out of pocket—maybe grab a small pack just to hold you over until the ones from Medicare arrive.
Just to give you a little pep talk, we never had any trouble getting the diapers approved (though we definitely struggled with about a hundred other things...).
Once we got the neurologist's report, we took it straight to our primary care doctor, who then submitted all the paperwork to the board. Back then, they handled everything, but nowadays you might have to lug the files to the commission yourself. In our case, I think everything was settled in about two weeks.

Our doctor drafted everything based on the discharge papers, though we ended up handling the paperwork for the commission ourselves. They approved some things and turned down others. Honestly, I was just relieved because buying diapers is such an insane expense, and then there’s the million other little things you have to stock up on—shampoos, lotions, wipes, gloves... I even make sure to rub lavender oil on my mom ahead of time, and so on, you just keep buying stuff.
The amount of diapers they provide isn't nearly enough, but it's definitely easier to just go out and buy more.
I suspect the substitute doctor wouldn't dare sign off on anything without a neurologist, but the primary doctor can certainly make that happen.
We're also struggling with home care. We currently get visits three times a week, but we really need five, and we've already been denied for that too. A home health nurse visited us during the sixth month to set things up for the seventh and eighth, so they'll most likely be doing rounds again toward the end of August or beginning of September.

I want to express my sincere gratitude to everyone for your responses and your support. My mother called the folks over at the Hospice today to see if they could provide any helpful information. They informed her that, based solely on the discharge summary, she should be eligible for diaper benefits since it counts as a specialist's opinion; consequently, she plans to visit her doctor again tomorrow. Hopefully, she will have better luck this time around. Having learned from all of your shared experiences, I advised her to simply refuse to be brushed off and to remain persistent. On a brighter note, she is absolutely delighted with Ms. Goga from the Hospice, who has been such a pillar of support and told her she can reach out to them anytime with questions or concerns. It is truly heartening to know there are still people willing to offer selfless help outside of this forum.

Hey, I’m checking in too. Still fighting the battle with the nursing home, though things have calmed down a bit. Dad’s been there almost two weeks now, and he’s already been to the ER nine times in just seven days. On the first day, they ripped out his IV line and didn't set it back up right (that happened three times), which led to the absolute nightmare where his feeding tube got clogged. Honestly? It was my fault. I made some stupid mistake with the formula and it gummed everything up. At that moment, I genuinely thought I’d killed my own father. Thankfully, they finally managed to swap it out after a massive struggle. Then there was the water issue... and then they had to pull the tube again, but they actually got it sorted this time.
He actually seems to be doing better over the last couple of days. He has a physical therapist helping him work on his exercises, and he isn't losing his grip on things—he can even talk when the IV line gets finicky. He’s even changing the gauze under the IV himself and applying his own cream. He’s walking, too, which the nurses at the facility are treating like some kind of miracle. He isn't being a problem child, and he hasn't needed the ER since last Tuesday (well, excluding Saturday when I insisted he go in for a check-up). He’s stopped calling me constantly asking when I'll visit, and the staff at the home hasn't called me at 5:00 AM anymore... at least not yet. He looks so much better. I honestly didn't realize what a fighter he was.
I actually threatened the facility to get them to fix the suction machine, and they promised to have it done this week. I’ve already given my notice to quit my job, but the worst part is that Dad is starting to actually like it there.
For now, we're just dealing with the hydration issues, plus he has an infection under the IV site because he ripped it out, taking some skin with it. It’s all oozing and looks pretty gruesome. I’m applying cream, but nothing seems to help. The skin at the ER is a total pain when I go in to clean the site. I tell them it’s because the suction machine at the home is broken, and they just shut up. If that redness doesn't clear up by Saturday, I’m dragging him straight to the ER, and I might just slap that nurse myself. Truthfully, I don't even want to go there; it feels easier to just leave him to deal with them so they have less work to do. Sadly, my dad is the one suffering for it. It's heartbreaking. But there’s still a tiny flicker of hope in me... mostly because he refuses to give up. Most importantly, he isn't getting disoriented anymore and is physically stronger. As for that damn cancer, it looks like it hasn't spread past his neck yet... if only he could get strong enough for the chemo.

Kimberly Green23 said:Hey everyone. Sending huge support to slyseal28 and Grace Fowler. Please, keep staying optimistic just like you always have.
I haven’t posted in a while. My stepdad was doing significantly better, but then he caught a bladder infection. His primary care doctor prescribed some antibiotics, but completely failed to consider that people with stomach issues shouldn't be taking them—and he’s dealing with adenocarcinoma. Long story short, he turned yellow and ended up spending three weeks in the hospital. He’s back home now and feeling a bit better. However, his discharge papers included recommendations for adult diapers and a visiting nurse, and that’s where the headache starts. The substitute GP (his regular doctor is on vacation) refuses to authorize the Medicare coverage for the diapers without a recommendation from a neurologist at the local clinic, but the neurologist isn't available until the end of the month and there’s no one covering for him. I keep telling my mom that the hospital's recommendation should be enough and we shouldn't need a neurologist, but I honestly don't know if I'm right. On top of that, the head visiting nurse won't sign off on the paperwork for regular home care because she claims that last time she saw him two months ago, he looked "pretty good." Does anyone have advice on how to deal with these absolute nonsense bureaucrats without totally losing our minds?

Change everything. Seriously. Especially the GP (if the substitute is just as useless) and the visiting nurse. In my case, my dad's regular doctor was away for specialized training, and nobody was actually "covering" for him—it was just whoever happened to be walking through the doors at the clinic. It drove me absolutely insane because I never knew who was in charge or when they’d show up, and I simply don't have the time for those games. So, I moved him to our small rural clinic. That doctor actually works with people; he does house calls and, most importantly, doesn't lecture you about your specific situation. He was the one who wrote the order for the IV fluids, which was vital because my dad was practically starving. Even at the medical board meeting, they were asking if I needed nursing care. I didn't. Getting the IV coverage was such a battle because almost no one would cover my specific needs, so I eventually had to pay out of pocket for different nurses every single day just to get those fluids. To make a long story short... the GP writes the prescription for the diapers to confirm it with Social Services, and you can get them at any pharmacy. Even if the substitutes aren't what you want, it works. The issue isn't the system itself; it's the individual people. Whether they *want* to write the paperwork for Social Services or not. But as for the visiting nurse? You really have to give them a piece of your mind... "Oh, he looked fine two months ago"? Give me a break. Our healthcare system is a joke... no comment...

dustyranger11 said:Hi, I’m checking in too. I am still struggling with the whole home situation, though perhaps slightly less intensely than before. My father has been there for nearly two weeks now, and in just seven days, he ended up in the ER nine times. On the first day, they pulled out his cannula and didn't set it quite right—which happened three times—but the absolute worst part was when the feeding tube got clogged. I blame myself; I made a foolish mistake by creating a little blockage that sealed the tube shut. At that moment, I truly believed I had killed my own father... thankfully, they eventually managed to swap it out after an immense amount of struggle. Then there was the water issue... and then they had to pull the tube again, which they finally handled successfully...
He seems to be doing somewhat better over the last few days. He has a physical therapist helping him with exercises, and he isn't getting disoriented anymore; even when the cannula gets blocked, he can still speak. He manages his own gauze changes under the cannula and applies his own cream. He is actually walking, which the nurses at the facility consider nothing short of a miracle. He isn't being difficult, and he hasn't been back to the ER since last Tuesday (he went on Saturday for a preventative check-up at my request, but I won't count that). He doesn't call me incessantly asking when I'll visit, and the staff at the facility haven't called me either... at least not at five in the morning. He just seems so much better. I never realized what a fighter he actually was...
I threatened the facility about fixing the suction machine, and they promised to have it sorted this week. I've already given my notice at work, but the worst part is that Dad is actually starting to like it there.
For now, he’s just dealing with the fluid issues, and he has an infection under the cannula because he pulled it out, tearing the skin in the process; it's all festering and looks quite gruesome. I apply a certain cream, but it doesn't seem to help much. The skin at the ER gives me such a hard time whenever I go in to clean the cannula. I tell them it's only happening because the suction machine at the facility is broken, and they just go quiet. If that redness doesn't subside by Saturday, I’ll drive him straight to the ER and give that irritated skin a good slapping myself. Honestly, I don't even want to go there; it would almost be easier to leave him to their mercy so they'd have less work to do. Unfortunately, my father suffers because of that. It is tragic. But a small spark of hope remains within me... simply because he refuses to give up, and more importantly, he is no longer losing his grip on reality and is physically strengthening. As for that wretched cancer, for now, it appears it hasn't spread past his neck... if only he could get strong enough for chemo...

I wish I could offer more insight, but I will just say that the doctor at Avian kept telling my father, "As long as you aren't bedridden, you're doing fine! Walking helps!"

I still find myself needing so much courage...

So, my husband went in for a chest and abdominal CT scan this past Friday (08.08) at our local general hospital. Honestly? The whole experience was just horrific.
They kept badgering him for his previous scans, but all he had were the discharge papers from Jordanovac, since every single one of his records is sitting over there. We’ve never even laid eyes on the actual imaging. His last CT was two years ago, which showed everything was fine, but we don't have any other results on hand.
It's my husband we're talking about, and he just gave them what he actually had—those discharge papers.
And then, the medical staff at the CT department just started unloading on him. It was like being caught in a firing squad. They were telling him he should just go back to Jordanovac to get his scans done, questioning his right to even be there, and demanding whose recommendation he was following. And look, the recommendation came from an internist based on a pulmonologist's opinion from Jordanovac! All of this, mind you, while they were shouting and yelling at him, only to drop this bombshell at the end: "Sir, you are extremely sick."
I mean, who gives them the right to say something like that? My husband is a complete wreck now. He’s spiraling because they told him he was seriously ill, so now he's convinced they saw something terrifying.
Since when do they get to decide who's allowed to have a CT scan? If we can't get it done here, where are we supposed to go? We've lived in this area our entire lives.
And seriously, what gives them the right to pick fights with a patient who's already dealing with a heavy illness? Did they skip the entire psychology module in med school or something?
Where is the decency...
On top of that, the results aren't due until Friday, 08.15, which is a holiday for Our Lady. Great.
So, I guess we won't see anything until Monday, 08.18.
Is it normal everywhere else to wait ten days for a CT result? Because this feels insane.

Lisa White54 said:My husband went to our local general hospital this past Friday (08/08) for a CT scan of his chest and abdomen, and what he experienced was nothing short of horrific.
They kept demanding his previous medical records, but all he had were the discharge papers from Jordanovac, since every single one of his scans and reports are filed there. We have never even seen the actual files ourselves. His last CT was performed two years ago, which showed everything was fine, but we simply don't have any other documentation on hand.
He is my husband, after all, so he just handed over exactly what he had—those discharge papers.
What followed was a relentless barrage from the medical staff at the CT department: they told him he should be getting treated at Jordanovac, that he should be doing his scans there, questioning his right to even be there and whose recommendation he was following (it was an internist’s referral, based on a pulmonologist's opinion from Jordanovac!). It was all delivered through shouting and condescension, only for them to ultimately tell him: "Sir, you are extremely ill."
By what authority can they say something like that? My husband is now in a state of complete despair. He is convinced they saw something catastrophic and that he is gravely ill, simply because that is how they chose to deliver the news...
Where do they get the right to decide who is allowed to have a CT scan, if we can't even get one here, where else are we supposed to go? We have lived in this community our entire lives.
By what right do they argue with a patient suffering from a severe illness? Did they not teach them anything about patient psychology during their training?
Where do they get the right...
And the results... will they be ready next Friday, 08/15, on Our Lady, which is a holiday???
So, I suppose we'll have to wait until Monday, 08/18!
Does anyone else experience a ten-day wait for CT results elsewhere?

Absolutely terrible. Truly appalling... especially regarding the yelling and the way they attempt to convince someone they are deathly ill. Honestly, where does such brutal behavior from doctors come from? They certainly shouldn't be taking their own frustrations out on those who are at their most vulnerable...👎