Palliative care is not only for people who are at the end of their life. This video shows how early access to palliative care can offer physical, emotional, social and spiritual support for people with cancer at any stage.
I have been in palliative care for over a year now. Great people. Very responsive.
We chat regularly, like therapy in person. It's been nice. They also have coordinated my at home care with my home hydration and have gotten me extra scans and such.
My pall doc has also signed off on my MAID application.
I have only done so well emotionally because I had these people supporting me.
Its also good to inform people that you can still get chemo/radiation while in palliative care. You don't lose your regular team, you just add.
Thank you so much for sharing on a personal level how much it has helped you! IT is so important for others to hear firsthand experience.
I just wanted to say I have followed your experience since the beginning when you first joined. You have come a long way when it comes to quality of life and symptom management. Would you agree? I'm so impressed with how you have pushed through and been so candid here always jumping in to help.
Thanks for being a strong voice in our community, You are so appreciated!
@Lacey_Moderator, thank you very much! That sentence, “Palliative care may help people live longer”, is a very important message. I did not know this when I started palliative treatments.
The first time I was told I was going to be given palliative treatments, I was angry. (Not a “Why me?” type of anger. Why not me? Why anyone?) I was angry because I only knew about palliative care in the context of end-of-life care. My level of independence, mobility and activity was on the opposite end of the spectrum of people I used to work with in palliative care so I was confused as to why ”palliative care“ was being used in reference to my case. The oncologist didn’t have any answers to my questions and there was never any mention of a palliative care team.
This video informs people that the scope of palliative care has expanded. Thank you to you and everyone who created the video.
I think anytime we do treatment that does not have a curative intent then its called palliative treatment. I did palliative chemo and palliative radiation. A hail Mary.
Palliative care they assign you a doctor (outside of your cancer doctors). This doctor you will meet regular and as often as you need. They check your pain levels, if you need anything at home, like home care nurses or assisted devices (they make the referral).
My palliative doctor coordinates my care. Avoids overlapping orders to other people and less confusion on timelines (example how long home care).
My palliative doctor has been much more than this thou. She is a great lady. So my oncologist said I could wait for my next upcoming scan to investigate a new pain, he said we had time to wait. My palliative doctor got me in right away. For peace of mind. She's a firm believer in quality of life and mental health. She also got me an extra doppler scan. She has also been my therapy for the past year.
Palliative care doctor is only a call away, they call you back same day. The follow up is great, very responsive.
I wish everyone had a palliative doctor. Its a great place to be. Ok so not great to be referred to palliative care, but if you need they are the best.
@Lacey_Moderator I was pleased to see this very important topic posted. After my l last surgery both my oncologist informed me that the surgery was not a home run. It was during this conversation that I first heard the term palliative care, which felt like a punch in the gut. I have since learned much more about what is meant by palliative care. My wife and I have already made the important connections through my current home nursing.