Hope is a subject that is often discussed in support groups of all kinds and especially for those of us who are living with a terminal illness. I find it sometimes difficult to balance hope with reality since I am immersed in the research going on and in mentoring several newly diagnosed cancer patients. In these scenarios, I come across the amazing outlier stories as well as those people who live only a short period of time. I hear from researchers, whose work and research fail more often than it succeeds and yet they go to work every day, focused on the next idea and the next and the next.
How do we hold onto hope when 116 men and women die every day in the US of Metastatic Breast Cancer?
To answer this, I turn to a virtual conversation with my dear Emily Garnett in the context of the play, IV.OurLives. Her way with words is truly unmatched and I so appreciate this window into how she thinks about hope. This conversation contained others than just me and some of you may recognize this discussion.
“There is a huge difference through hope via action and hope via pandering … The overarching Question to ask/answer when it comes to messaging is how we can provide hope without sacrificing the much-needed call to action that comes with the brutal realities of this disease. And I think my perspective on hope has shifted so significantly in the last week, where I feel like I have been hit relentlessly with bad news.”
Hope is hard to see when there is so much bad news, news of death all around us, news of progression, news of the pandemic, news of newly diagnosed patients, news of trials shutting down and funding drying up. Hope is hard to find when those of us in the metastatic community will be the last to receive medical care when it is rationed.
Emily went on to say ….
“But I feel like placing hope in seeing outliers continue to live is like trying to win a down payment in Vegas. It’s not a hope you can hang your hat on, it’s a lot of luck, and the part of what is hopeful about a lot of outlier stories is not their continued outpacing of the disease, but what they do with it. And that is the hope that I think we need to parse out- the hope for good luck (as is part of the grieving process in newly diagnosed life) versus (or maybe shifting to) the idea that hope is not an idea, or an ideal, but that it is the ongoing concrete actions of those who are giving their time and energy to ensure that we are not alone. It goes past research, past treatments, to the belief that what we can do with the time we have is to contribute to a collective legacy that will make the world better.”
Looking at the experiences of others and hoping to follow in their footsteps is a bit of a pipe dream or the Vegas analogy that Emily used. At the beginning of my diagnosis, I often tried to compare my experiences, my diagnosis, my circumstances to those of others; trying to find the key to being an outlier. I’ve come to the conclusion that it’s a waste of time and only drives me a little crazy.
I also really like Emily’s perspective about how we can put our hope, our focus, our goals, our energy towards contributing to a collective legacy that will make the world better. We are all contributing to the collective legacy of the MBC community, whether we know it or not. It’s a good reminder that we all have some kind of responsibility to that legacy, to the cancer havers who come after us.
“I think there needs to be the idea of hope as a separate point from just longevity, because the concept of Hope needs to shift away from the understanding that longer life = better situation. It’s not realistic right now for MBC, and that might need to be unpacked a bit. What does hope really mean? What does hope symbolize when we find ourselves in situations where Hope isn’t conforming with the reality that has been handed down to us?”
Since quantity of life does not always equal quality of life, we have to look at what we’re hoping for, what we are working towards. Are those of us in the metastatic community just looking at a longer life, even if that life is miserable? I’m certainly not. I talk to cancer havers regularly who are evaluating whether to stop treatment all together because of the lack of quality of life on medication that is technically extending their life. This is a personal decision and one that impacts more than just the cancer haver themselves, it affects everyone around them.
“I don’t think that we necessarily exist outside of hope, even within our darkest times. But I don’t think that hope exists separate from grace or resilience. I think it’s the root of both, but that hope becomes treacly when we (or anyone) try to tease it out in a way that doesn’t recognize its limitations.”
I frequently tell people that if I didn’t have hope, if I didn’t have resilience, I wouldn’t be able to get up every day; there would be no point. Emily’s point is that there is no hope without resilience to back it up. Hope itself, by itself, without the ability to apply the ability to handle the detritus of life and the details of being a professional patient, is just empty.
Emily concluded her musings with this line:
“Hope is the community you can continue to find when you find yourself terrified with the worst news you’ve ever received, and those people hold you together and support you in the ways you couldn’t even articulate you needed.”
I don’t think anyone could say this better. This idea that we are #StrongerTogether, that without our community of support, we are lost, we founder, we despair. We see the experiences of others, we see how the community supports its members, we see how much more we can accomplish together.
Robert Louis Stevenson said in Virginibus Puerisque, 1881: “Little do ye know your own blessedness; for to travel hopefully is a better thing than to arrive, and the true success is to labour.”
Here’s to laboring together!