Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
Supportive and palliative care are critical for people living with cancer to better manage treatment-related side effects.
Since I started living with cancer over five years ago, it’s demanded I make “flipping your perspective” my superpower. I’d rather be able to transport myself through time and space or at least fly, but for practical purposes, perspective-flip mastery is a good power to have.
Among other things, I’ve used it when I can’t get out of a minor funk and when someone says something unintentionally hurtful while trying to be kind. And now, thanks to an excellent segment during the Komen Chicago virtual Metastatic Breast Cancer Conference featuring advocate Corinne Whitney, I realize what I’ve been doing all along in my quest for better palliative and supportive care just needs a perspective switch.
Palliative care — which is kind of an umbrella term for the care patients need to have the best possible quality of life — and supportive care were unmentioned when I started treatment over five years ago. I only learned about them by becoming active in cancer advocacy and through social media, where I was amazed when other patients talked about their palliative care team addressing the same issues I faced alone.
Only … perspective-switch … I wasn’t alone. I did, of course, have the friends and family who love me. But I also had my health care team. No, that team didn’t (and doesn’t) include a palliative care specialist but it included people who know how to get me the care I need, if I express that need.
As I listened to the webinar, I thought about how my oncologist, when I said I wasn’t exercising as much, and she asked why not, immediately referred me to a specialist and I was in physical therapy within 10 days. The same kind of thing happened more recently with my mental health and with concerns about my bone health.
Sure, it would be wonderful to have a designated palliative care doctor on my team but what I have constructed instead works well, too. As Ms. Whitney pointed out, “You know what your needs are.” She’s right. There is a specialist for almost anything and between your oncologist, your primary care physician, the nursing staff, and your own community (family, friends, cancer organizations, fellow patients), you can figure out who is the best person to see. “There is help out there, but you’re going to have to ask for it” is probably nowhere as true as in palliative and supportive cancer care.
As I am writing this, I am thinking about my oncology appointment tomorrow. My chemotherapy-induced peripheral neuropathy continues to be a problem for me. It can hurt to type. I can’t comfortably hold a pen or pencil. I have learned how to compensate for these issues and others but maybe there’s something more I can do. How do I ask for that help — and how best to ask for what’s needed when palliative/supportive care/survivorship aren’t easily located or accessed at your cancer center?
What is the problem?
Sometimes the side effect or issue is crystal clear, like my neuropathy. It may be more general, such as fatigue or not feeling like yourself. The more specific you can be — with examples of when you experience these symptoms, what you’re doing, the time of day, how often it happens, how bad it is and any other bits of information — the better.
What do you want?
Do you want to know if a potential side effect can be prevented or the risk of it reduced? Are you looking for immediate help because the problem is acute and causing real harm now or you are fearful it quickly could? Are you looking for integrative treatments? Really consider what is most likely to help you feel like your quality of life can improve.
Write things down
I write down what I am looking for in my patient portal. I send messages to my health care team infrequently but knowing they can see my message ahead of my visit helps me feel more comfortable bringing up the topic during a sometimes-rushed appointment. I also usually text myself a message with any important questions and make use of an app called “My MBC & Me”.
How much will it cost?
Though it’s unlikely your physician can answer this question, a financial navigator at the cancer center or through your insurance can help you figure out what services are covered and for how long.
Embarrassment is OK
Some topics can be hard to bring up because of perceived stigma and embarrassment. This is where I find writing it down ahead of time and making sure the doctor has access to my note helpful. Most of the time, issues that I am embarrassed about are matter-of-fact side effects that my doctor has seen many times before.
Letting my doctors know what’s happening means that my health care and quality of life are better overall, with my expanding patchwork of experts and resources filling in for more structured supportive care. This perspective switch reminds me that I am in control of my care, which is a reminder worth getting.