Yesterday morning, I went on Facebook to post in a support group for young breast cancer patients and survivors. I got connected to this group Young Survival Coalition at the recommendation of another survivor shortly after I was diagnosed. After reading the website, I signed up for their Facebook group as soon as I realized they had one.
Since I joined the online group, I’ve mostly read other people’s stories, comments, questions, fears, and victories in their battles with breast cancer. Sometimes their fears have amplified mine, but their hopes also have given me hope when mine felt low.
As a newbie to breast cancer, I got to learn about terminology, resources, and other issues that I otherwise wouldn’t have known had I not joined that online group. More knowledge can be both disconcerting and comforting; therefore, I have to be very mindful of how I interact with the page. Overall though I find the benefits to outweigh any discomfort I feel from reading patients’ and survivors’ challenges and fears. We all need an outlet to share our unfiltered thoughts, and that forum serves that purpose.
This online support group for young breast cancer survivors is the opposite of content that I find highly annoying online, and that content is inspiration porn.
There’s nothing like inspiration porn to make me roll my eyes, especially as I undergo cancer treatment during the global pandemic known as COVID-19, or the Coronavirus.
When members of the breast cancer support group are hopeful and joyful in their posts, I know it comes from a genuine place that came with a very exhausting, challenging, and soul-searching journey. When they post platitudes, prayers, and pictures of sunsets and other pretty things, it doesn’t make me puke because the context of our group lets me know that they had to—both work hard and surrender themselves—in order to experience hope and joy in their lives.
Yesterday was the first time I posted in this online support group, and I wrote this:
My first time posting:
I had a single mastectomy almost three weeks ago. I’m supposed to get my last drain removed on Tuesday (hoping my liquid level gets low enough to remove it safely because the plastic surgeon says he would have to remove it either way given how long ago my surgery was).
In the last week, I’ve developed a rash around my mastectomy. The plastic surgeons think I had an allergic reaction to surgical glue and/or something else—and/or possibly having my mastectomy site under a bandage led to maceration (based on photos I sent the plastic surgeon on call). This morning, I was told not to put soap or lotion on the area, and I had not been told that previously.
Also at this moment, I am going through fertility treatment. I usually want my friend with me to help with injections, but today I’m hoping to do the needles myself without her cheering me on in person. With all of these public recommendations to limit social interactions during COVID-19, I’m feeling like I’m also losing the in-person interactions that have supported me with my diagnosis months ago.
Little by little, I have felt like my plans for community care in this critical time for healing are being stripped from me. I’m weighing the pros and cons of asking friends versus hired help (home health aides) to drive me to/from appointments. It feels as if there’s no way to really know who is “safer.” How many guests to help me with my daily tasks during recovery is too much? The plastic surgeon on call that I spoke to this morning said, “Nobody knows at this point” what the best protocol is for someone in my situation.
I’m taking deep breaths now and hoping to just do my first fertility needle without my friend here in person. Asking for luck, prayers, and healing energy during this time! 💜
After I wrote this, my post received likes, loves, and lots of encouragement and empathy from others who knew how to sweeten my day without sugarcoating how daunting my experience was.
This is one of the reasons that I don’t quit social media when people otherwise think decreasing my time on it might make me worry less. In a world where in-person support groups are being canceled due to the Coronavirus, this Facebook group and other online communities have been essential to my coping process.
However, in choosing to go online, I have seen other things I do not like on social media. I saw people I knew who were choosing to go out and party in crowded places despite the fact that public health officials have advised against this practice.
I recognize that many people in our country have to leave their homes because they might have an occupation or other responsibilities that require them to interact with others. I’m not talking about those people.
I’m talking about the people who decided that the Coronavirus wasn’t going to stop them from enjoying their carpe diem or YOLO moments.
Some of those people were ones who sent me their thoughts and prayers after I became more public with my breast cancer diagnosis in my post Saying Goodbye to My Body (As I Know It). It incensed me that they did not see the hypocrisy in their actions. Some of them had survived their own major health issues, but they weren’t taking into account how their travel to places near and far could impact the greater public health.
That’s when I re-shared Saying Goodbye to My Body (As I Know It) and posted this:
Hey, you might remember when I posted this a couple months ago. Many of you sent thoughts and prayers. Thank you so much. I would like to share an update on my breast cancer treatment. I still need your thoughts and prayers AND more from all of you. Here is a message I sent some supporters of mine this morning, but the message is also for all of you:
Hi, everyone. I hope everyone is being safe, healthy, and comforted in the midst of this global pandemic. I am SO GRATEFUL to you all for providing socioemotional support, listening ears, advice, food, drinks, post-op friendly clothes, rides to/from appointments, and resources beyond what many people have regardless of their health conditions. 🙏🏽
Some of you have told me that your workplaces may or may not provide you with flexible schedules to work remotely. I understand that it’s easier said than done in some jobs, but please practice social distancing. Now is the time to be an advocate for others (who might be more vulnerable than you) and yourself if you haven’t had to do that before.
This past weekend, I called my plastic surgeon’s office four times (three times yesterday) to talk to the doctor on call because I have been dealing with a rash that got bad enough yesterday for them to prescribe me medication. I had to persist and persist until they understood all of my concerns. (They think it’s a fungal infection based on photos I sent them, but my plastic surgeon needs to see me in person. The nurse for my fertility pharmacy told me it is common after many major surgeries.)
Yesterday the plastic surgeon on call was reluctant to tell me to go to the hospital because the ER is not the best place to go currently if you can help it. I’m hoping to meet with my plastic surgeon today if he can fit me in his schedule. It is safer for me to meet him in his clinic rather than go to the ER.
If this is what I am being told as a post-op patient with a drain still in my body, a rash, a breast cancer diagnosis, and fertility treatment … then we really need the healthy people to stay healthy so that the medical system isn’t getting so clogged.
As a patient and a friend of multiple medical professionals, I know some of the best hospitals in Boston are taking the best measures they can to protect us—but even they are encountering limitations to their ideal response plan.
If you know people who are willfully going out when they don’t need and are thinking they’re healthy enough to “get away with it,” please let them know that this isn’t just about them. This is for all of us.
Peace. ✌🏽 💜
For the record, I’m not someone who’s so concerned about public health just because I was diagnosed with breast cancer right right before the Coronavirus hit. I’ve BEEN CARING AND ADVOCATING for awareness on these types of issues before being faced with cancer treatment during a global pandemic. At my birthday party months before my diagnosis, my friend and I were having a friendly debate about the healthcare system. Now my party was a lot more than a healthcare debate. There was a lot of joking and chatting about lighthearted things—but somehow after a few drinks toward the end of the night, my one friend and I got into such an intense debate that my other friends started looking awkward at the table. I didn’t care because it was my party, and I could do whatever I wanted.
I don’t care more about public health because I’m more personally impacted; I simply am viewing this through a more personal lens—and I’m wondering why people, who I typically find to be loving, have not cared enough to give up a party for the sake of their communities’ collective health.
I don’t know, and it’s not for me to answer. All I know is that if someone wants to send me thoughts and prayers again, I will also ask them to send me practical actions.