Quick update on me: Today is my first-ever colonoscopy prep! I'm oddly excited about it: alone time is precious. The kids are getting whatever screen time they want, and I am going to hang out in the bathtub with a book or laptop and hope I can write a book or a song or maybe just a few blogs...
Today, I'm going to write quickly about some of the things that SHOULD be offered to mastectomy patients, but are somehow only available if you know to ask. We all know about oncologists and surgeons, but here are the other roles that should be part of your care team.
Top Question to ask your Nurse Navigator: What programs do you offer that I should be asking about? You should be offered:
Physical Therapy. I've started PT for my post-mastectomy chest/muscles/shoulder, which is something apparently every mastectomy patient should be offered. In Louisville, Kort Physical Therapy has an entire program that specializes in rehabbing cancer patients. Some of their therapists actually sit in on the tumor discussions with the oncologists and surgeons ... and still the hospitals forget to tell patients about it.
The only reason I knew about PT it is because I happen to know the therapist who runs the cancer program, and I reached out to her. Why the oncologists/surgeons didn't recommend it is beyond me. My oncologist met with me literally once, and when I went back to discuss my pathology, he sent his APRN instead.
Behavioral Oncologist: In my opinion, this should be the very first appointment when you get a cancer diagnosis. It's a Psychiatrist or APRN with psych specialist and prescribing powers. You need someone you can talk to who understands cancer and who cares about your feelings and your sleep. Hands-down, my behavioral oncologists have been the most important part of my care team. "Team" is a stretch, and remember: you are the team leader.
Social Worker: This person is key to discuss all the program offerings, and they can advocate for you to receive some extra care. They can help with financial aid. They can connect you with community resources. They can do straight-up talk therapy, and they work with cancer patients all the time. It's an important specialization.
Art & Music Therapy: This is great for both patient and family. Most hospitals nowadays have programs like this, and it's hugely helpful. Ask. Especially during COVID times, when patients are not allowed to bring their partners, it's helpful that these therapists can come to the hospital.
Nutritionist: I'm pretty well-versed in nutrition, and I generally eat well. Still, cancer medications really mess with your hormones and metabolism. Did I know a nutritionist was offered as part of Norton Cancer Institute? No, I didn't. I only knew because I asked that important question: what other services should I be seeking out? It's easy, when you have cancer, to just be, like, screw it, I'm gonna eat ten cookies because I was vegan for most of my life and got cancer anyway so who cares. It's nice to have someone on your team to hold you accountable.
It is always helpful to take a notebook to your appointments, but also: straight up ask them what you should be asking. Ask what programs they offer. Ask how you can receive support. It's easy for you to become just another number (that's how I feel in my care team), but stay on them. Be your own advocate. Be loud!
Ways to Support If this was helpful and you feel like it:
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2 comments
check out the Young Survivors, support group for younger women with breast cancer. It is now part of Norton's Cancer Care.
ReplyDeleteAlas, I am too old! But totally great resource for the young folks, and big thanks to Megan for making it happen.
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