Before my bilateral prophylactic mastectomy scheduled for January 10, 2023, I told lots of people - friends, colleagues, and clients. When I was diagnosed with breast cancer on January 9, I elected to send a broad email update to pre-empt any well wishes for the surgery. I did not post on social media, and ultimately, my only social media evidence of my cancer was joining the Peloton Breast Cancer Survivors group and posting in October about an anthology I participated in called I Walked This Path Too. My interest in being targeted with cancer-related advertising was below zero!
The initial email (edited for proper grammar):
January 10, 2023
Hi friends,
Some of you may know that I had to defer my surgery today as I was diagnosed with breast cancer on Monday (the day before surgery, aka yesterday). We're doing pretty well. It's small and early (but aggressive). We've created a CaringBridge to keep people as informed as they want - no obligations.
A request - we welcome your texts and emails—text to call as well. We welcome opportunities to catch up, laugh, and feel your love and support. Prayers and good vibes are welcome, too. Please let us ask rather than offer horror stories, medical advice, and suggestions. We don't know much yet, but we'll work on the plan and enjoy all aspects of our personal and professional lives while ensuring my energy goes first to healing. Y'all know that I'll need more to think about than cancer.
https://www.caringbridge.org/visit/joellekaufman/journal/view/id/63bdbebb5b8484635e4c4922
When we know more about what we need, Jessica will coordinate (and I'm sure she can use help). I'm fortunate to have all of you in my life, and I'm sure we'll need your help. My diagnosis isn't a secret, and you are welcome to share the information with other people who know us and would want to know/support us.
I appreciate your friendship, your humor, and your love.
Love,
Joelle
Guidance for my friends
I sent my email to BCC to anyone I thought knew about my surgery, as well as people who were members of communities who could share it among themselves. Ultimately, CaringBridge analytics revealed when different communities learned about my diagnosis based on who visited the site. Inadvertently, I realized that I left people out and subsequently forwarded them the message with an apology.
It’s hard to know what to say to a recently diagnosed friend other than I’m sorry this is happening to you. In my note, I was explicit on the type of information I did not want arbitrarily. You may believe a particular diet, alternative therapy, supplement, meditation, drug regimen, etc., is the best answer for me. You may want to help and are an expert web researcher who found credible links to studies and protocols. Please let me ask instead of offering. I received a deluge of information from the doctors I consulted and sought out guidance from my family members and other recent survivors.
When a well-meaning friend sends, texts, or shares uninvited information, I feel defensive and responsible for responding to their message. The message may accidentally infer that I am responsible for having cancer because of how I ate, exercised, slept, and indulged. I know which of my friends are master searchers online, and if I want information from the Internet, I’ll ask.
It’s very tempting to tell me that it's going to be okay and that I’ll beat cancer. People say that to make me feel better, and I appreciate the intention. Statistically, that’s probably right. But statistics don’t apply to an individual. The highly educated and trained specialists treating me are the only people I trust to convey confidence about my probable outcome. Friends of cancer patients may not know if I just received good or bad news, and platitudes make me feel compelled to communicate or deceptive if I choose not to share. When you mention that you were thinking of me and sending me love, I don’t have to do anything except say thank you.
Please use the CaringBridge to find out the plan and stay informed. It’s very tiring to repeat the story of my diagnosis, treatment plan, or how I am feeling. I like to escape the cancer world and hear what’s happening with your life, your family, and your work. It distracts me and reminds me that there is much else beyond UCSF and my treatment. I enjoy it, so please indulge me in the trivialities of life. They are precious.
I don’t like being the center of gossip, and I’m uncomfortable depending on others. Reaching out for help made me feel vulnerable and exposed. Please don’t talk about me on social media. I haven’t posted there for a reason. If you are looking for ways to help, I created a list, and Jessica architected a carefully crafted Sign-Up Genius linked to my CaringBridge. Before adding anything from the list to the Sign-Up Genius, check with me, Neal, or Jessica.
I welcome messages of love and support. If you are spiritual and want to add me to your prayers, my answer is always yes. If you are so inclined, sign up to do something, or let me know every so often that they thought of me. You make me feel safe, loved, and supported. Per Dr. Arthur Brooks, “Happiness is pleasure plus people & memories.” Being involved with me on this journey makes the journey happier. It is the small things that matter. Cancer takes time to treat, and there will be many opportunities to provide support. Stay in touch.