Navigating Grief and Support for MBC Patients

In my circles of good friends living with Stage IV Metastatic Breast Cancer (MBC), there is a great deal of suffering at present and that weighs on all of us. It is not abnormal to get on a zoom call ostensibly about the “business” of advocacy and talk mostly about these personal struggles because we lean on each other in big and small ways. We notice small and large changes, sometimes before anyone else because we’re tuned into each other in nuanced ways and are more vulnerable with each other than most in our real lives. The catharses of sharing the struggles and grief with each other cannot be overstated and, yet, the burdens we each carry for and with each other aren’t small.

I am thankful for each of the dear friends I’ve made in the MBC community, past and present. Each has changed and affected me in unique ways, each has meant something meaningful that no one else truly can, each has shown up in big and small ways, each have a piece of my heart.

And yet.

Knowing there is a magical, special person I love dearly who is suffering miles and miles away breaks my heart just a little more every day.

I grew up mostly in the Midwest and my instinctive care style is what I would affectionately call the “casserole brigade,” no intended reference to the book or movie of the same name. I’m thankful for all the ways we can send food or other tangible ways of caring for each other from afar, but to be so far away is to have fewer options when someone needs help. And there’s been too many friends that I never saw in real life again because they died before I could see them once they started to decline. Plus, once someone starts to struggle, they often lose the ability to respond to texts or phone calls or access social media and we’re left to the mercy of overwhelmed and struggling family members, many of whom don’t know who we are because we exist in spaces family often cannot follow. It’s just so complicated and I often feel so helpless, hence a significant amount of care packages and multiple staging areas in my house for said care packages.

And let’s not forget that it wasn’t so long ago that only knowing someone online wasn’t quite acceptable — some of the people who have left an indelible mark on my soul, I only met in person once or not at all, which still boggles my mind sometimes.

Grief is a many layered thing. We start grieving the loss of the lives, in all their many layers, we had or envisioned throughout an experience with cancer, especially metastatic cancer. Walking alongside someone else also grieving those things can be the most supportive action I’ve ever experienced; and walking alongside someone dying of the same disease that will end your life as well feels a little like torture at times. Triggers abound, tears are sometimes constant, heartache follows, and there is massive love underlying it all. We who suffer know how to speak into the suffering of others in ways that still overwhelm me.

Don’t get me wrong, I wouldn’t give up my connections with dear dear friends; at the same time, it brings up a lot of uncomfortable feelings I’d rather look away from. Facing our mortality is hard and overwhelming; facing that same mortality with others facing the same thing creates bonds that withstand time, distance, mortality, and grief. I sometimes think about grief like the ocean — it is vast, unknowable, relentless, cyclical, inexorable, incomprehensible, soothing, present, eternal — sometimes all of this at once. Whenever I feel as though I’ve understood some measure of grief, I learn there are more layers, more depth, just more, especially with those who share such intimacy.

The depths of love in these connections make the grief so much deeper, much more profound, in ways that change us forever, over and over and over.

For those of you who are looking for ways to show up for people living with cancer and grieving, here’s my top five takeaways from walking this path for the last almost nine (9) years:

1. Don’t make statements, ask questions. Hearing “this too shall pass” or “I’ve thus far lived through 100% of the hard days” when I’m in crisis mode doesn’t help, it feels dismissive. Instead, ask how someone is doing that day, that minute, that second and stick around for the response, all of the response.
2. It’s ok to ask what you can do, but if someone tells you a thing, you MUST DO THAT. Asking what you can do should mean you are willing to do whatever that person says. If that’s too open ended for you (and it is for a lot of people), offer the thing you can and are willing to do. If you are able to offer babysitting or grocery shopping or lunch or coffee or an ear, or whatever, offer what you can do and then FOLLOW THROUGH. We see and notice who pays lip service on social media but doesn’t show up in real life and that matters, it matters a lot.
3. Don’t look away and don’t disappear. Living with metastatic cancer is a full time forever thing, so if you want to provide support, understand that we need help and support forever, not just today. Compassion fatigue is real and I get that we need a lot at times, but understand that we can’t walk away and it hurts when you do after you’ve promised to stay.
4. Understand that the crisis, the struggle, the difficulty belongs to the person, not you. You don’t get to share what has been told to you unless you are given permission, even if what is happening is happening to a family member. I wrote a post about Grief Tourists back in 2022 and it still resonates. Don’t be a tourist.
5. We’re not all the same and we ride a rollercoaster of emotions every single day. Just because you know someone with the same diagnosis or even something “worse,” understand that what works for one person doesn’t automatically work for another or maybe doesn’t work all the time. There are days when I can laugh and employ some dark humor to handle all the negativity and other days when that same joke would move me to ugly cry. I get that this might feel like a minefield, but consider what it’s like to be inside our heads.

“Grief is not a disorder, a disease, or a sign of weakness. It is an emotional, physical, and spiritual necessity, the price you pay for love. The only cure to grief is to grieve.” Earl Grollman (https://gather.app/blog/10-powerful-quotes-about-grief/)