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ViviAnn

Palliative Care

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Hi, ViviAnn,

I will reach out to our members to encourage someone with experience with palliative care to respond in this thread. In the meantime, here are some posts and links that you may find helpful:

https://www.caregiver.org/understanding-palliativesupportive-care-what-every-caregiver-should-know

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hello ViviAnn, after my diagnosis last November, I received a call from the palliative care office at the cancer center where my oncologist is. She said my oncologist always has them give his new patients a call, to briefly explain the services they offer. Since she called me during the day while I was at work, I couldn't speak to her for very long, and promised I'd be in touch. I finally ended up making an appointment a couple of months ago and had a great discussion with the nurse practitioner there. She explained that if I am having pain issues (I'm not, currently), she is able to give me options, both medical and just practical information, for dealing with it. For example, Tylenol doesn't usually work very well for me, but Advil does. However, Advil isn't advised for pain relief with the oral chemo I'm on (Tagrisso), so they could prescribe something else that would work. My biggest issue is that I experience a lot of "scanxiety". Although I'm not completely against treating it with drugs, I'd rather not take something every day. She gave me a couple of ideas for relaxation and being able to acknowledge and work through those feelings, and also said I could just take an anti-anxiety med for a few days just to get me through it. That's something I would feel comfortable doing, and in fact I plan to give her a call before my next round of scans.

When I mentioned to a couple of my friends that I'd seen the palliative care nurse, their eyebrows went up a bit. I explained the difference between palliative and hospice care. Even I had been reluctant initially, but it's so good to know that there are options like this to deal with symptom management. Thankfully, my symptoms right now are fairly minor but I think it will be a plus that I'm already "on their radar" when symptoms become harder to deal with. 

Hope that helps you a little.

JulieG.

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