← Return to Palliative Care: What is it? How do I get it?

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@merpreb

@cindylb- I also found the lack of emotional support very disappointing. But my husband askekd me, do you want a friend or surgeon? What a good point! Surgeons and radiologists seem to be very straightforward, dealing with precision and numbers. I do remind my radiologist, who I adore, that I am a person and he has to look at that too. He always says "Numbers don't lie" or some such nonsense. I tend to make my doctors my friends, at least my lung team.
Your husband is very lucky to have a wife as willing to help and compromise during this difficult journey. It's so important to know what kind of a person you are helping too- I take care of things immediately too, but I tend to trip over my other emotional self.
However having stage 4 lung cancer myself I also want a good quality of life. I am petrified myself of accepting my own death. I'm also thinking about looking into counseling about this through my oncologist's office.
I love, love, love the expression, "noise of married life and life itself!" I'm going to steal this term!
I am so glad that you have spoken freely as you an here. I hope that others will see the value of searching out such a person. Has your husband benefited from the counseling too?

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Replies to "@cindylb- I also found the lack of emotional support very disappointing. But my husband askekd me,..."

Thank you for sharing your experiences with palliative care! I was diagnosed with acute myeloid leukemia 6,5 years ago. I had a lot of chemo, stem cell transplant and was in and out of the hospital for a very long time. I wish I knew about palliative care at that time - I would have really benefited from it.

We had a social worker on our floor when I had my transplant, but I felt like I could have used a lot more support at that time. My hematologist oncologists were totally focusing on “fixing” me and they did. I was also focusing on surviving and beating my cancer. All other aspects of recovery were largely unaddressed. I have a strong faith in God, so prayer and meditation helped greatly. Hoping not to need it in the near future, but I am prepared to utilize it next time.