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Sally Wolf: Patient advocacy almost always begins with oneself

Photo from Sally Wolf/LinkedIn

Jul 29, 2024, 17:50

Sally Wolf: Patient advocacy almost always begins with oneself

Sally Wolf, CEO and Founder of LightWorks, shared on LinkedIn:

”I cried twice at my oncology appointment today.

The first tears came while advocating for myself, disagreeing with my oncologist about next steps.

Usually, every ~12 weeks I have a checkup for 3 reasons:

check my blood counts,
receive an injection,
see my care team.

My care team alternates between my oncologist and nurse practitioner. I chat with whomever I see in these wellbeing check-ins. Plus they do a manual breast exam.

Today, my oncologist seemingly randomly decided in 12 weeks I’d see NO ONE.

In other words, I’d come for bloodwork and my injection, but that’s all. I questioned it, repeatedly, but it wasn’t until tears formed that she understood I wasn’t on board.

For starters, when I had a recurrence in my breast two years after my double mastectomy, I didn’t find it. My oncologist felt it in one of these exams.

So while I feel SO fortunate to be such a healthy cancer patient – a metastatic patient my oncologist is willing to push to a more relaxed schedule – I felt anxious.

Without question, some folks in my situation would be thrilled to skip that appointment, no doubt.

But I needed to speak up for what I needed, and when I did, my oncologist met me where I was.

Patient advocacy almost always begins with oneself. Moments we have an experience that doesn’t feel right, push back, and question it.

Part of my speaking up is for me. And part of it because I know not everyone is as comfortable doing so.

There are hierarchies, and patients who already feel vulnerable are likely to defer to the doctor in the lab coat.

So I speak up not only for me but also for whoever else is in her office afterward and may not feel as capable.

In this type of situation, my hope is she poses shifts like these as a question next time – i.e., ‘I’m ok with you not seeing anyone next time. How does that feel for you?’ – rather than force any patient’s hand.

The second tears were happy ones, hitting a PET scan personal goal. Even milestones that aren’t probable are almost always possible, and I am full of gratitude.

Wishing you all a beautiful weekend, and hoping these words remind you to alway speak up for yourself and what you need. I, for one, am cheering you on.

Photo: Selfie after my oncologist left the room when I had a solo moment to feel the full roller coaster. Had to hold up my hand as my fave phlebotomist Bessie matched my gauze to my heart shirt!!! (care team win!!)”

Sally Wolf