The Importance of Comfort Care (Palliative Care)

Posted by Julie H @jkhagen1, Apr 16 8:11am

For those who are patients at Mayo (or who have explored beyond this particular discussion group), this might not be news to you. For everyone else (patients and caregivers)- read on! I am 4 weeks post chemo/radiation for HPV SCC base of tongue/tonsil. I was referred to palliative care early by the very wise doc who diagnosed me. I consider myself extremely fortunate that I didn't experience a lot of pain with my treatment. I had a few big bumps in the road (blood clots in arms, permanent hearing loss, dehydration, weight loss and subsequent G-tube). Now, I'm in the healing phase and so happy I made an appointment with the Palliative Care team. I needed a "tool kit" of sorts to help me deal with the aftermath of this really hard treatment. How to manage fatigue and chemo brain? Striking a balance between nausea and constipation? Why am I so itchy and what can I do? Where might I find in-person community of those who are experiencing the same things? So - moral of the story? Your healing phase needs a different set of docs with different gifts. Seek them out. It's definitely worth it!

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Sue, Volunteer Mentor | @sepdvm | Apr 19 8:46am

Hello @jkhagen1, and welcome to Connect H&N. In 13 years of fighting metastatic SCC I have never been recommended to see a palliative care team. I'm afraid that is all too common for patients. I was aware of palliative care, and will turn to it if/when I feel the need, but many people are not aware, or perhaps feel it is an end of life treatment. One of my favorite books is by Ed Creagan, a Mayo palliative care MD, How Not to be My Patient. It is such a positive and helpful source of information. I have to thank you for opening this topic and relating your positive experience with palliative care. Others will definitely benefit from this discussion.

hopenjoy2024 | @hopenjoy2024 | Apr 26 11:36pm

I am sorry you have to go through this and I hope you have a good recovery. Unfortunately, there is much confusion and varying information regarding palliative care, but it is an important resource for anyone and everyone with cancer. I hope your post brings more awareness.

Janell | @jlharsh | Apr 27 12:16pm

Hi @jkhagen1 , your post in inspiring. Thank you.

I took a look at your profile and your focus to become a spiritual guide stands out to me. Not sure how your training compares to my understanding, but spiritual direction training is something that interests me. What a lovely approach combined with palliative care and all it involves. You rock!