Anticipatory Grief and Internal Loss: What Matters?

Last updated: December 2022

I am engaged on MBC forums that I find really helpful to me and to others, and I saw someone post a really thought-provoking comment. Well, it was thought-provoking to ME.

This person said something to the effect of “Just once, I’d like to see an article written about what it means to grieve our losses as an individual rather than how it (and our death) will impact others.” Let that sit with you a moment.

I have a dear friend who is a fellow patient advocate that frequently talks about her husband and kiddos. I don’t think this particular person was referring to anything that my friend wrote, necessarily, but I do get what this person was getting at. At least I think I do.

How does loss affect us?

There are a lot of people who will do ANYTHING to stick around for as long as they can. They will accept anything that their cancer and cancer treatment brings—no matter what, because they have certain milestones in mind… such as making it to a daughter’s wedding or the birth of a first grandchild. A lot of things connected to children growing up without us, spouses losing us, and issues related to the financial well-being of loved ones after we die. This is how I interpret that poster’s remarks. Rather than looking at how our lives and our deaths affect OTHERS… how does this loss affect US?

Being stable is not necessarily enough

I have a wonderful friend that I met through a certain online forum who has remarked to me on many occasions that she gets certain feedback from married women… who she claims have “doting husbands”… that aren’t necessarily hearing her in HER personal loss. My friend lost her husband, her home, and recently her best friend from childhood stopped communicating with her.

Her bone situation is so bad that she can’t stand up straight, can’t walk much at all, mostly uses a wheelchair if she can go out at ALL, and can’t even do the basics like wash her own hair. Her pain is non-stop, and intense, as well. These other women who I bet THINK they are being helpful keep reminding her that she is “stable.” Well, for a lot of us… being stable is not necessarily enough. Not if our quality of life is not meeting our personal standard of acceptability. And what we deem our personal quality of life is… UP TO US. Even if we decide, at any point, to move that goalpost. That, too, is up to us. And only us.

My friend told me the other day that she is not planning on continuing treatment. Because I want her to be around, I hope she changes her mind. Maybe she will. But one of the greatest learning curves I have on all this is the fact that I have ALWAYS supported someone’s choice to refuse any and all treatment. I am steadfast in my OWN decision on that when the time comes. But, when it is our friend, we hope they decide to stick around. I know that I have to get better at this, considering that this is different than anything I have ever really lived with before. It’s real now. Truly issues of refusing life-extending treatments.

Weirdly, though, I am firm on my own position on this. For ME. Even before I was diagnosed with MBC, and thought it was only early-stage breast cancer… I put together my Advanced Directive. I knew I long needed one, and this pushed me to get it done. Finally.

Well-considered territory

Looking ahead, I put in my Advanced Directive a comment about my intention to pursue Physician Assisted Death (PAD). Not for any reason related to the AD itself, as that is only about whether I become incapacitated and the sections about what happens after I die. Yet, I purposely put that in there so that no one… years later… could ever claim that I was making any decisions out of depression, etc. Nope. I will NOT die in hospice or in a hospital, provided I see my end coming. Only way my wishes will not be met is if my health declines unexpectedly.

I am leaving my body to science (and one of the first things that broke my heart after diagnosis was realizing I can’t be an organ donor), and I know quite precisely what I am willing to accept or not accept in my life. I’ve known for LONG time. This is incredibly well-considered territory.

Transitions, change and ambiguity

So, what are MY losses as I look at my life? Well, I always had a weird sense that I might not live to old age. Although, I was pretty sure I would be taken out by a heart attack or car accident. When that person talked about loss for US as a person rather than how it affects others… I don’t have a spouse or dependents. No one is counting on me financially or otherwise. I have friends who will grieve my passing—some more deeply than others. Yet, my major contribution when I die will still be that last act of giving. And I hope my body goes to the Johns Hopkins medical school.

What else am I grieving, while I am still alive? Right now, knowing that my life will be shortened is hard. Not knowing what that actually means is even harder. Fortunately for me, I even made a career out of transitions, change, and ambiguity. I am comfortable with that. This means, too, that I am strangely comfortable with my someday impending death. Doesn’t mean I WANT to die, but I do have very strong feelings about what makes for a life I want to continue. When my independence suffers, it’s time for me to assess my options. And, no laws will dictate when or how I choose to leave… when I choose to do so. So there.

Anticipatory grief

For my remaining time on this earth, I feel sad that some things I wanted to accomplish may not come to pass… such as getting my MSW and PhD. For some reason, I want my obit to refer to me as Dr. Costello! (Has a nice ring to it, right?) Still, there is no telling if I might not still make that happen. What I DO know is that I decided that I need to proceed as if I will be around for a long time. That is in relationship to earning what I can between now and when I can’t work anymore… or choose not to… and trying to best protect myself, financially and otherwise, if I actually make it to old age. Worst case scenario? I have more to donate to my preferred charities upon my death. That will be part of MY legacy.

What do I most deeply grieve today? Where do I feel loss most heavily? Where is my ANTICIPATORY grief? The person that asked the question about external effects of our passing, and in the context of internal loss, raised an important question as relates to some of us. To me. I cry REALLY easily (even as I write this section, in fact) and have trouble having discussions about anticipatory grief—but not as it relates to me, necessarily. Instead, as I move deeper and deeper into the MBC community… I KNOW that it is only a matter of time before I start losing people I love. I already see this happening as I move into “inner onions” on things, and someone I never met but is close to the others around me… is in the ICU, etc. When I think of certain friends I’ve made so far, I can’t imagine them not being here. Who is to say if I go first or they do? All I know is: the most important, deepest, and most cherished relationships of my lifetime are apt to be with fellow MBC patients.

Loss is coming. Theirs. Mine. Yet, I also have to look at the beauty in that. Because, that is what it is.

You have to open yourself up to potential pain (and loss) to fully love. I am half bracing and half running into the fire. MY anticipatory grief is not about my own death.

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