What do you do when you feel down and wish you had never gotten HCC. You are a good person. Through your work you help many people and you care. Then one day you show up at the ER for treatment for mycoplasma pneumonae, which you had; but are also told you have liver cancer and one year to live. Some days I wish I would wake up and realize this wasn't real. Why aren't most health care providers remotely encouraging. Not "everyone" dies from HCC. Thus you have a chance. By doing this they take away hope. The most important attribute you have to beating this. Something must change in our healthcare system. Defeating a patient's hope should be malpractice. If you've had similar experiences please share.
Coping: What do you do when you feel... - Blue Faery Liver ...
Hello RolloMay , please check out the new opportunity I posted. I'm emailing you another one that came up as well. Let's see if we can figure out exactly what treatments are best for your tumor!
I agree, our healthcare system needs a major overhaul. There are so many issues related to HCC. Often patients are treated like it's their own fault because some of the causes of HCC are related to behaviors. Often people diagnosed with lung cancer have the same stigma. I know several people who got lung cancer who never smoked, weren't around second hand smoke etc. I lost an aunt and a cousin to liver cancer who never drank, did drugs, had Hepatitis, etc. Jimmy believed in being honest so he never denied his behavior and choices in the past probably caused his HCC BUT no matter how or why you get cancer NO ONE DESERVES cancer. He actually had a couple doctors tell him he was reaping what he'd sowed. So the stigma is one big issue. Another is the fact that even with the risk factors, testing can catch it early but many don't even know they should be tested. For many without insurance, it's cost prohibitive.
Also without insurance it's hTd to get a doctor or hospital to do much because as you said, they figure it's not worth it. Sone health care professionals don't think it's worth it even if you do have insurance and they discover it in an advanced stage. We've experienced the whole gauntlet believe me...from the doctor that says it's Jimmy's fault he has it, to not being told about testing even when he did have insurance and could have afforded it, to the oncologist saying he won't be alive long enough to bother with treatment to the other extreme where the oncologist encourages continuing treatment that is not only NOT working but is also killing him faster than the cancer. None of it is right and none is fair. That's why Jimmy and I got involved when Andrea offered us the chance to speak out about what we've experienced by taking part in the different opportunities to raise awareness about HCC. That's why I still share our story. So much change is needed but nothing will change if we don't speak out and make them hear us. I'm actually sharing our story on Tuesday and Thursday this week- two different groups and will go out to different populations.
The squeaky wheel gets the grease and we need to be really squeaky. ❤️❤️❤️
Believe me, you're preaching to the choir here because we agree and realize there's problems. Keep an eye whenever there's anything posted under the opportunities topic and share your story, thoughts and feelings to ones who do desperately need to hear it.
Don't forget to make the very most of whatever time you have whether it's one month, one year or 10 years. Don't let HCC rob you not only of time but of happiness. God Bless.
Sharon Dixon ❤️
I'm so sorry to hear that you and Jimmy have had experiences of doctors blaming him for HCC. It is so disheartening to see that there are such uncompassionate people working in the cancer space. Medical schools need to start incorporating classes that teach medical students how to treat patients with compassion. Something definitely needs to change, and you're making a huge difference by speaking out about this issue💙🙏
Yes! We must be very squeaky.
Good morning RolloMay ,
I'm so sorry to hear you've had this experience💔😢. I completely agree with you, the healthcare system needs to change, especially for healthcare workers working in the oncology space. Giving patients compassion, hope, and encouragement can make a huge difference. 💙🙏