neonmoose27 said:Hi everyone! Has anyone here had any experience with the CyberKnife specialty hospital over in San Diego?
The only thing I know for sure is that they won't provide any consultation based on "outside" medical records; essentially, if you want them to look at you, you have to undergo all your testing right there at their facility. Back when my dad was sick, they weren't part of the standard insurance network—I'm not entirely sure if that's changed since then. On top of that, he really wasn't interested in repeating every single test from scratch. Plus, to even go to them for testing, he would have had to be formally discharged from his current hospital, so we just decided to pass on it altogether.
Unfortunately, we never actually got to the expert medical assessment. My father's illness progressed far too rapidly; he passed away just three months after his initial diagnosis. By the time we even realized that option was on the table and started gathering the necessary paperwork, everything was already over. It was actually through this very forum that I first learned about that possibility. It’s honestly tragic that nobody within the healthcare system bothers to inform you about it. What really infuriated me at the time was that my mother couldn't even qualify for caregiver leave to look after him, because apparently, you can only get that if the disease is already in its terminal stage (!?). I honestly have no idea what kind of illness you need to be battling in this country for them to consider you "terminal"...
I’m going to stick to my guns on this one: I really don't see any point in putting someone through those uncomfortable examinations if they have absolutely no intention of following through with any of the treatment options. At that stage, what is a diagnosis even going to achieve for them?
Regarding the fever, it used to spike randomly without any predictable pattern—completely independent of the chemotherapy schedule. The only consistent thing I noticed was that it always seemed to hit at night. I remember that so clearly because I ended up waking up the nurse several times in the middle of the night. As soon as the thermometer crossed 37°C, we’d immediately start stripping off layers. The first time, my father refused to take his medication because he felt the fever wasn't high enough yet, so it shot all the way up to 40°C before we finally managed to get him cooled down.
They kept pumping my father with all sorts of medications that, in hindsight, were systematically wrecking his liver; however, the doctors insisted that managing his pain was the absolute priority at the time. In any case, I’d suggest trying to get a second opinion from an oncologist—perhaps they might have a more viable suggestion. Before the diagnosis even hit, taking a Zaldiar tablet felt about as effective as popping a TicTac—completely useless. But once they switched him over to patches, the pain vanished entirely. As things progressed and the discomfort intensified, they simply increased the dosage of the patches, and I can honestly say that right up until the very end, my father wasn't in any significant pain.
Regarding the decision to turn down treatment—whether it’s radiation or chemo—honestly, I have no idea what I would do if I were in those shoes. My father chose to go through with chemotherapy, and for a while, he actually seemed to handle it reasonably well. But then, his blood counts just completely cratered to the point where nothing could fix it. Would things have played out differently if he had opted out of the chemo? We'll never know. Ultimately, though, it was the chemotherapy that finally took its toll on him; without it, the cancer, which had already metastasized everywhere, would have finished him much sooner. My main priority was simply ensuring my father wasn't in pain.
As for getting an exact diagnosis, if someone isn't interested in pursuing treatment anyway, does it even matter? For my father, undergoing a bronchoscopy was easily one of the worst experiences of his life, and receiving the definitive diagnosis was what truly broke him mentally. So, I completely understand those people who prefer not to know.
I’ve been reading through these threads, and honestly, I can’t tell if we just got incredibly lucky or if our local healthcare system handles things better than other parts of the country. In our case, without even having to jump through hoops or beg for help, we were assigned a palliative care team. We had a doctor and a nurse who would drop by at least once a week—and even more often whenever we reached out. I actually ended up treating them to a little something special as a thank you; I kept all their numbers on speed dial, and they were always there for us, whether it was offering solid medical advice or physically showing up when things got tough. When Dad finally reached the point where he needed a specialized medical mattress, the palliative doctor didn't even wait for me to ask; she suggested we take one of theirs. They actually had several available, and I just had to swing by and pick one up. They even offered to lend us a wheelchair. In the end, Dad passed away before we even had a chance to utilize any of that equipment. The doctor told me straight up: helping a patient in that condition is a necessity, and it is our right to receive that support. That’s really the whole point of my post: you have these rights, so please, don't be afraid to advocate for yourselves and ask for what's needed. We didn't even need to see a specialist; based on the palliative team's recommendation, the insurance company approved the claim.
We went ahead and packed up every single one of those medications into a box and dropped them off at the local palliative care center. Honestly, I have no clue what they actually did with them once we left, but I’m holding onto the hope that they found a way to put them to good use for someone else.
Regardless of what you believe—or don't believe—losing someone close to you is a heavy burden that no one is truly prepared to carry. I found myself in that exact same dark place, though in my case, the mental strain eventually manifested physically; the sheer volume of stress actually made me ill. Once I realized I couldn't pull myself out of the pit on my own, I finally sought out psychotherapy. Honestly, if I hadn't, I have no idea where I’d be right now—probably still struggling with the basic willpower required just to get out of bed. My therapist quite literally saved my life. Looking at my own family, I can see how much of a difference early intervention makes. I managed to process things mentally, whereas my mother categorically refuses to seek therapy (mostly because she’s terrified of "what the neighbors might think"). Now, two years later, she spends her days in tears, refusing to engage in anything that might bring a shred of joy back to her life because, in her mind, losing her husband meant her life was effectively over. It’s completely irrational, and she’s only just beginning to realize that, but the longer you wait to deal with the grief, the harder the recovery becomes.
At the end of the day, life IS beautiful, even if it is fleeting. I am certain that no parent would ever want their child to stop finding joy in living just because they are no longer around. Not a single day goes by that I don't think of my father, but those memories don't drag me down into a depression anymore; though, I honestly don't know if I would have been able to maintain that mental stability without professional help.
Rachel Williams, I am so incredibly sorry to hear about your aunt... As for lymphoma, I can't speak to the specifics, though my cousin (my boyfriend's age, actually) went through it. It happened right at the same time my dad was battling his own illness, so, unfortunately, I didn't have the headspace to really dig into the details or ask many questions back then. All I know is that he’s doing great today.
Eric Ortiz4 said:After being involved in a car accident that left me with multiple fractures, I’m really unhappy with how the surgery turned out—even though my surgeon insists everything went perfectly according to plan. Specifically, I’m worried about my lower leg and the fact that I can't fully straighten my knee. My surgeon keeps denying that any error occurred during the procedure.
I’m looking for advice on what steps I should take next. I'm genuinely concerned that if I can't get my leg straight, it’s going to cause permanent issues with my gait.
Thanks!
My dad went through something remarkably similar when he broke his femur. They put so much hardware in his knee that he couldn't straighten his leg at all. His surgeon insisted everything was fine, so he traveled to another city to get a second opinion. Even there, they didn't find a surgical mistake, but they did discover some scar tissue buildup, which they cleared out via arthroscopy. Eventually, he saw a private specialist who was absolutely horrified to find that the screws used were actually too long, preventing the joint from moving properly. He ended up paying for a third surgery, and after just two days, he was walking out of the hospital. After that, things were okay. However, because his muscles had atrophied so much by that point, he dealt with slight walking difficulties for the rest of his life—nothing major, but it was noticeable. P.S. This was quite a long time ago, so please excuse my lack of medical terminology. P.S. Looking at the X-rays, even I could see as a layman that the screws were too long; I have no idea how the surgeon missed that.
It’s been an entire year since I last saw my dad alive. It’s honestly terrifying how fast the time has slipped by. And yet, at the same time, it feels like it all happened just yesterday... Not a single day goes by where he isn't on my mind. In a way, I still find myself acting as if he’s still out there somewhere, he just hasn't made his way back home yet...
I am so incredibly sorry... My father went through the exact same thing as your father-in-law; he ended up with a diagnosis after initially just dealing with back pain. He actually went to see his doctor specifically to get a referral for physical therapy, and then, just three months later, he was gone. I still find myself lurking on this forum because, back then, having a place where I could "talk" about all of this meant the world to me. I truly hope this thread has provided you with even a little bit of comfort—if nothing else, just a way to vent and clear your head.
I’d also highly recommend Dr. Cepulic. If you take his findings to him, he was honestly the only one who actually wanted to help in my father's case without us having to practically drag Dad out of the hospital where he was already a patient. He gave us the straight truth, even if it wasn't exactly what I wanted to hear. Honestly, I didn't regret spending the money, even though there wasn't much more he could do at that stage. Regarding San Francisco, back when I was scheduling a CT for Dad (way before the diagnosis, when he still thought it was just spinal issues), the wait times there were absolutely insane—we're talking like four years!?!? That is just terrifying to me. And everywhere else, the wait is brutal unless you're an inpatient; Dad finally got on the list for a CT after six months, which was two months after the diagnosis, and that was only a week after he had already undergone an emergency CT while hospitalized. It’s truly awful. I can't check the usernames properly on my phone right now, but to the person wondering if it makes sense to dwell on whether something could have been done sooner: I think any sane person would tell you no. Don't do that to yourself. You won't help the person who is sick by spiraling, but you will absolutely hurt yourself mentally (and quite often, physically, just like it happened to me). Instead, try to redirect that energy toward how you can support your aunt now, given everything she's going through. Hang in there, everyone!
Well... then it’s perfectly obvious why nobody actually takes advantage of that option. Even if someone manages to find out it exists, they usually don't live long enough to have "someone" actually approve it for them. Classic. I absolutely loathe our system. It turns out that if you want to be a healthy person, you basically have to place an order today just in case you might desperately need it two years down the line.
We’ve all been in similar shoes; you just have to let some time pass before you can finally tell yourself you did everything humanly possible. I actually ended up heading out to my high school reunion two days prior—mostly because the nurses practically kicked us out since the hospital locks down at 10 PM. Even then, I couldn't help but feel this nagging guilt, wishing I could have stayed just a little longer. Dad kept insisting he wanted to go home, and I kept telling him, "Just let them get you stabilized first, then we'll go," which was my standard response every single time. I can't quite forgive myself for leaving him there at the hospital instead of bringing him home; I keep playing back the scenario in my head, wondering if things would have gone differently if he were at home. This damn disease.
The other day I was visiting a friend, and she had a Supportive gesture on the table. Honestly, I just lost it and burst into tears. I really thought I had finally pulled myself together, but I guess I’m still a work in progress... That being said, those moments where life catches me off guard and leaves me sobbing are becoming a little less frequent as time goes on. Hang in there, ladies! :-*
ruggedmarlin2 said:My mom is undergoing chemotherapy for ovarian cancer using liposomal doxorubicin. Apparently, it’s this cutting-edge chemo designed to target just the tumor, but she’s having an absolutely miserable time with it. She's been dealing with constant nausea for two weeks straight now since her first dose. Even Zofran injections aren't doing much; she’s throwing up two or three times a day. All she can manage to keep down is maybe some milk or tea, provided she doesn't reject that too. She’s become incredibly weak—her only real movement lately is making trips to the restroom. I should mention that even before the chemo started, things were looking grim; fluid buildup in her abdomen was putting pressure on all her organs, which caused vomiting as well. The chemo seems to be working somewhat because there’s less fluid accumulation in her belly now, but she’s just so frail and constantly feels sick to her stomach. We’re wondering if anyone else here has used this specific chemo and experienced similar side effects. Thanks.
Ginger tea was a lifesaver for my dad. Fortunately, he didn't deal with much nausea at all, except maybe once or twice when he was actually craving some "real" food.
urbanharbor15, I am so incredibly sorry about your mother. At least she passed away surrounded by the people who love her most. I can't quite bring myself to forgive the fact that my own father had to pass away all alone in a hospital room.