I am stunned that a colonoscopy and ct scan were not done sooner! I will ever be thankful for the help that I received from my social worker and home health care. I also had to learn most things on my own.RU-vid was great. Thank you for the information on palliative care.
Wow poor girl it breaks my heart to hear her story . This is my brother’s life for the last ten years with Hodgkin lymphoma . Palliative care is very helpful for him . Poor girl why her doctor would delay everything 😡😡 thank you sweetheart for bringing her in and sharing her story . Hope and pray for this beautiful girl to heal and live a healthy life ❤️
Sadly there are too many others who have very similar stories. Most of us don't have medical degrees so we assume our doctors know best, but so much of medicine isn't black and white.
Thank you for sharing this video! Last year I was diagnosed with a chronic, progressive disease and had to really keep pushing for palliative care. A lot of times I got shut down until I quoted the passage on their website saying that it is for anyone who has something that there isn’t a cure for, and will get progressively worse and not better and the finally listened to me and took my request much more seriously. The palliative care office is in the geriatric unit, and that is who they focused on what my side effects and pain management and have been helping me SO much since I started. I wish they offered this to everyone especially the ones to fit into their boxes of what they think it should look like. Great video! I’d be happy to talk more in-depth of it if you or any your subscribers need it. Palliative just means improving your life surrounding your care- including possible cures. Hospice is that you have about 6 months to live, and can work in conjunction with hospice, but they are not mutually exclusive.
Thhank you for posting this issue about palliative care, i have stage 4 colon cancer and have spoken to a social worker , i have a better understanding of what palliative care is and knowing they are there to help with mental health physical symptoms and stress associated with chronic illness, you are wonderful for helping with this issue.
Very informative and helpful video, Jelena! When I was diagnosed with prostate cancer, I didn't realize how much it would impact my mental health. Although my medical team provided excellent service, they solely focused on physical health. Until your video, I didn't even realize palliative care was an option. Thank you so much for posting, and a special thank you to Yvette for sharing her experience.
Same here 🤚🏼 Even the strongest of us struggle with our mental health after a cancer diagnosis. Most of our oncology team is so focused on treating our cancer that mental health gets put on the back burner.
@@SurvivorJelena If you know anyone who might be interested, my prostate cancer memoir is free to download today and for the next 5-days. I found writing extremely therapeutic and sharing a big part of my emotional healing. twitter.com/GogsGagnon/status/1309885861987713026
God bless you both and thank you for sharing your experiences. This channel has been very helpful for me as I'm going through chemo treatments right now. I've learned so much and I'm thanking God for healing 🙏 🙌
Actually I just started. I'm on round #3 and so far I have been able to handle the side effects better than I expected. Just staying positive and looking forward to the last treatment. I watch your videos often and you helped me so much during this process. I was so nervous about having the surgery and that's when I stumbled across your channel. You have been my inspiration every since. I can definitely relate to your friend's story because I feel that there is not a lot of information out there that is accessible to those of us who are fairly young. Well I like to think of myself as young...lol. I'm 43 years old and never in a million years did I think I would be faced with stage 3 colon cancer at this age. Thanks again for responding and I hope I'm able to catch your live video...I have questions. 😆
@@traceyjenkins4748 that's great! And if you're doing 8 rounds, you're almost halfway done! I'm so glad you found me and that you're finding my videos really helpful. That's exactly what I was hoping for when I started this channel 😀
Great video Jelena! A huge thanks to Yvette too for discussing such a difficult topic. I'm surprised that they didn't CT scan at stage 1, and the colonoscopy missing the advancement! I think a really important lesson to survivors to push push push for CT scan check ups. Is this type of care and support something you may take advantage of Jelena?
I'm surprised too, but since I was diagnosed at stage 3 I'm not as familiar with the usual protocol for follow-up appointments/scans/tests for stage 1. You sound like my dad 😜 (he asked the same thing)! I feel like I've pretty much got all the doctors and help that I need right now, but if I struggle with anything in the future I'll definitely ask about it.
My palliative care team has an actual doctor in the team which is the doctor that prescribes my pain relief. I was very misinformed about palliative care, I originally thought it was an end of life service. I now know the difference between palliative care and hospice. I was referred to them by another one of my doctors. I now have a case manager, a doctor, a nurse and a social worker through them ❤️
So strong person! It's really sad the state of healthcare where proven tests are not part of a comprehensive monitoring of a disease of this magnitude. Much love!
So true. Our insurance companies shouldn't get to dictate who lives and dies, but that's exactly what they're doing when they deny people tests and treatments.
Thank you for this video! I too was put off a bit until I just insisted on a mammogram. I had no lumps and there were no visible signs of breast cancer. I just kept having this intrusive thought that "my tits were going to be the death of me." I am SO lucky that the mammogram technician was really, REALLY thorough and was suspicious of a light pink dot that I legitimately could not see. They quickly moved along with additional mammograms, sonogram and, finally, a biopsies. I was diagnosed on February 6th with stage 3c/grade one inflammatory breast cancer/invasive ductal carcinoma and a bit of squames cell carcinoma in one lymph node. I'm so pissed that my gynecologist put me on a estrogen based birth control for an off label use: pain management. Sadly, it really worked wonders for my 4+/week migraines and some joint pain due to having Lupus. But, the "opioid crisis" has only had one function: to keep people in life altering chronic pain off of the pain medications that will allow for small things like walking to your own bathroom. I feel for every family who has lost a family member to an overdose, but that overdose is only the result of decisions made by that family and, specifically, the family member who CHOSE to do drugs, sometimes, everyday. So, yeah, I'm pissed that my gynecologist was making lethal decisions about my health care in which I should have been given the proper medication first and not a peculiar off label medications. Now, I now that as far as staging Inflammatory Breast Cancer, stage 3/grade 1 is almost as good as it gets. So, my story is very different. But, so many girls with IBC are not being taken seriously, being refused medical test and paying with price with their lives. Not okay.
Nice video as usual, super informative. A question if I may, in the USA if you want a colonoscopy or a CT Scan and your insurance or public health system doctor does not prescribe it to you, can you go to a private doctor and just pay for it?
The doctors will of course take your money! They may have you pay up front, and the procedure typically costs at least $1,000 and probably more like a few thousand.
Sounds to me like you have a legal case against these BS doctors. I would be livid! You know your own body not them. I would have changed docs until I found the one with qualifications.
My Peripheral Neuropathy is off the charts and my oncology team doesn't seem to know much about it other than it is a side effect of chemotherapy. I am past treatment.
