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Often times those of us not living with metastatic breast cancer hesitate to speak out about it for a variety of reasons. Wrongly or rightly, we think we don’t have the right to do so. We don’t really know what it’s like, so how can speak out about it?
I do know that if you’ve had an earlier stage breast cancer diagnosis, you certainly do think about metastatic disease probably more often than your family and circle of friends realize.
If you have observed a loved one suffer and ultimately die from metastatic breast cancer, you understand a whole lot, but still you don’t really know. Until it happens to you and your body, you can’t really know. This is true of many things in life.
Still, we don’t have to experience something first hand to be empathetic, speak out, become enraged or feel compelled to do something. And I feel compelled pretty often.
Well, first and foremost, there is always the experience of my mother in the back of my mind. Her experience with metastatic breast cancer was also mine, partly anyway. The memories are always there. Time fades their harshness a little, but only a little. There is much to remember…
In addition, I have a fair number of online friends who are metastatic and I am compelled to advocate for them, in memory of dear friends no longer living, too, of course; as well as for those I do not know affected by this disease.
I first read the posts which the following excerpts are taken from quite some time ago, but I have never forgotten the words of these three amazing bloggers. Ann, who continues to author the popular blog, Breast cancer?... But Doctor I Hate Pink! wrote these words not that long after her mets diagnosis; they are still powerful today almost three years later.
"It used to be that cancer took over and we died quickly. Now, we are able to beat it back for a year, for two, or five if we are lucky. But, there is no cure, and everybody eventually does die. This means this new generation of cancer patients must live in a strange kind of purgatory, our brains split between life and death.
It's an odd feeling to mourn your life while you are still living it."
My friend Rachel, author of The Cancer Culture Chronicles, wrote an equally compelling post about a year before she died called, The Well-Trodden Path. In this eloquently written post she described the incredible sense of isolation that seems to accompany a metastatic diagnosis:
"Living with metastatic breast cancer is a strange and lonely place to be. Because now there are no real milestones, except the one that no one wants to talk about. There is no definite end to treatment, unless it simply stops working, in which case you move onto the next option. If you still have options."
Shelli, who blogged at The Dirty Pink Underbelly, wrote about her intense sense of isolation and struggle with depression:
"It hit me this week how awful it is to be in the same rooms all the time and never go anywhere. It's taken nearly three years, but I'm finally stir crazy. These past few weeks of being sick, the past month or so of not being able to drive myself anywhere have finally made me feel trapped."
Sadly, Shelli died in February 2014 from metastatic breast cancer.
Reading the words these women wrote, as well as reading the words of so many others dealing with metastatic disease, is heart-breaking and to me, unacceptable.
No one living with metastatic breast cancer should feel isolated or abandoned, especially by those who proclaim to be their supporters.
Why do so many living with metastatic breast cancer feel isolated, forgotten, yes, invisible anyway?
The diagnosis of a disease that will likely be terminal is isolating enough, but this isn’t the whole story. Perhaps pink ribbon culture is partly responsible for this feeling of isolation that so many of those living with mets experience. Undoubtedly, pink ribbon culture has been a vehicle for a lot of good. It has helped bring breast cancer out of the closet for sure. However, there is also growing discontent regarding how and why pink ribbon culture for years now has failed women (and men) living with metastatic disease.
Pink ribbon culture has primarily preferred to portray the feel-good stories. The media has certainly perpetuated this “let’s put a happy face on breast cancer” kind of story.
Who doesn’t love a feel good story?
I like them too. Most of us prefer happy endings.
But the feel good stories must also be balanced with a dose of reality; the reality that those living with metastatic breast cancer are probably not living the "hooray pink" life-style. The reality that those living with mets will be in treatment for the long haul, and the harshest reality of all; that 40,000 women and men still die from metastatic breast cancer every year.
Maybe we’ve all failed here. Maybe we have all been too quiet for too long.
We all have a responsibility to more fully acknowledge, embrace and support those living with metastatic breast cancer. We also all have a responsibility to advocate for more fairly dispersed research dollars specific to mets research. All our voices are needed; the voices of those living today with mets, the voices of those no longer with us and the voices of those who care.
Only when we combine our voices, will those living with mets begin to feel more visible, more heard and ultimately, a little less alone.
Breast cancer awareness without mets awareness isn’t awareness at all.
How will you use your voice?