While I was out walking the other day, I passed the home of a student I had taught a few years back. I’m still friendly with the student’s mother and she was out working in her yard. Our paths have crossed more over the last few months. We have some similar interests and both like supporting our community. On this particular day, she shared that a cousin out in New York City had been diagnosed with metastatic breast cancer. Active. Mid-thirties. A new mother. It’s unbelievably hard to process at any time in a person’s life, but I understood it was hitting her really hard during COVID-19 in a geographic area that has seen astronomically high numbers of cases and deaths from the virus. I am calling her Marcie which is not her real name.
I know what’s like to be going through active treatment during a pandemic in Wisconsin. My lens is what I experience and what I see through network news. I don’t know exactly what life is like for Marcie, but I empathize. I know far too well what it’s like to have life repeatedly turned upside down. My friend asked if there was anything I could share with her that she could pass on to someone newly diagnosed with stage iv breast cancer. We talked a bit longer and I said I would message her a couple of ideas.
I found I couldn’t limit it two or three tips as I thought about what to send. There are many things I’ve done over the years. Some pieces fit into my life better than others. Everyone has their own list of what works for them. I thought about what worked for me, what still works for me, and came up with a top ten list that I sent my friend. Marcie and I are now in communication. I share my list as today’s post.
Top Ten MBC Supports
- Take a health journal with you to appointments. Use it to note vitals, take notes, keep a list of questions, document side effects, file test results, etc. I am on my third binder. My notes helped me understand appointments better, remember them, and sometimes I needed them if my oncologist said something that I found contradicted something earlier. A health journal provides a source of accountability.
- Consider buying Radical Remission by Kelley Turner. This is the top book I’d recommend from all the cancer ones I have read. I heard she also has a podcast. I haven’t listened to the podcast. I am cheating a bit with this point because it contains much of the advice you would suspect to hear on nutrition, stress, and more. It examines 9 factors that long term survivors have in common.
- Belleruth Nepartsek has a guided imagery CD that I downloaded early on in my diagnosis. It was called “Fight Cancer.” I listened to a guided imagery segment and an affirmation segment daily. I am sure she has several guided imageries. The one I like involves a real or imagined place outdoors where you are surrounded by supporters that you know or may not know. It was often in the afternoon when I felt fatigued and I would fall asleep as I listened. I still listen to it every so often. I find it empowering.
- Comfort foods are good. When you feel sick, you need to eat what keeps the vomit demons at bay.
- Exercise as you are able. Even if you don’t feel like it. Try to do a little walking every day to keep moving. I wasn’t always good at this. Now, it is a priority every day.
- I found essential oils helped with anxiety and nausea. They are not to be ingested. Just inhale. Lavender, peppermint, and spearmint work well for anxiety and nausea.
- You may have to set boundaries with others on what you need and don’t need. It’s okay to say no thank you. Don’t feel pressure to accept invitations or share information just because someone asks insensitive, none of their business questions.
- Some people you may not know very well will rise up and sincerely support you. Let them in. Keep in mind those boundaries. Some people you’ve known for years, perhaps some family members and close friends, may disappear because they honestly can’t handle your situation. Let them go.
- Advocate for yourself. Ask questions. Be persistent. Be knowledgeable. These qualities make you an assertive and strong patient – not annoying or difficult. Look into your rights as a patient. Know your rights.
- Ignore statistics whenever possible. You are not a number. I was given literature to read before initial treatment even started. I could see it contained percentages on survival rates . . . and I threw it out unread.
I forgot maybe one of the most important things I’ve internalized . . . DON’T GIVE UP. There is a lot of research happening on the metastatic breast cancer front. Ask about it. Research the research on your own. One of the best things I did was some special genetic testing through FOUNDATION ONE that identified some new mutations in cells. Mutations that can be targeted.
Don’t give up. Keep searching to find a way.