Does Living With Metastatic Breast Cancer Have to Feel So Lonely?

Does living with metastatic disease have to feel so lonely? 

Sometimes, I think those of us not living with metastatic breast cancer hesitate to speak out about it for a lot of reasons, primarily perhaps because of fear, but also because we don’t think we have the right to do so. We don’t really know what it’s like, so how can speak out about it?

If you’ve had a breast cancer diagnosis, you have certainly thought about metastatic breast cancer, probably way more than anyone in your circle of family and friends realizes, am I right?

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 about it.

And I’m feeling more than a little compelled today.

Why?

Well, there is always the experience of my mother in the back of my mind. The memories are always there. Time fades their harshness a little, but only a little. There is much to remember…

On top of my own memories, it’s something else. I’ve been greatly moved by words some “sisters” living (or who lived) with metastatic breast cancer have written.

I’m reflecting on a compelling post I read written by Ann, author of the blog, Breast cancer?… But Doctor I Hate Pink! The post was powerful, to say the least. I hope you’ll take a few minutes and read it.

Ann describes how her life feels surreal, almost as if she is living two lives. She concludes her post with these thoughts about living with mets:

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 before she died called The Well Trodden Path in which 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, blogger at The Dirty Pink Underbelly, writes about her intense sense of isolation and struggles 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. 

The fact that these women, as well as so many others, feel/felt alone and isolated is heart-breaking and to me, unacceptable.

This needs to change.

No one living with metastatic breast cancer should feel isolated or abandoned, especially by those who proclaim to be their supporters.

Before this can change, we must ask why do so many feel this way?

Why does it so often seem this segment of the breast cancer community is forgotten?

Why do so many living with metastatic breast cancer feel invisible?

Of course, the diagnosis of a disease that may well be terminal is isolating enough, but I don’t think this is the whole story. I don’t think this is the only reason for the loneliness.

Pink ribbon culture is, in large part, responsible for creating this feeling of isolation so many of those living with mets feel.

Pink ribbon culture has been a vehicle for a lot of good. It has helped to bring breast cancer out of the closet. However, as almost everyone knows, there is also a lot of discontent today about how the pink ribbon culture has failed.

This lack of attention to those living with metastatic breast cancer is the greatest failure of all.

Pink ribbon culture seems to prefer to primarily portray the feel-good stories. The media has certainly perpetuated this fairy-tale-ending type portrayal. It seems every time you turn around another celebrity is putting a happy face on breast cancer. In and of itself, there’s nothing wrong with this.

Who doesn’t love a feel good story?

I like them too. I 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” lifestyle. 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 in the US alone.

Why does pink ribbon culture not more fully embrace those who are in greatest need of their support?

It seems we have all failed here. It seems we have all been too quiet.

Until we more fully acknowledge, embrace and include those living with metastatic breast cancer and work harder to improve and save their lives, we have failed and failed miserably.

As Gayle Sulik, author of Pink Ribbon Blues, surmises:

Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is…a disease process that ignites what is all too often a cycle of medical surveillance and interventions…For too many, it will be the eventual cause of death…They deserve better than this, and so do we.

We must keep working to bring metastatic breast cancer further out of the shadows.

Only then will those living with it begin to feel more visible, more heard and ultimately, a little less alone.

Finally, if we are not aware of metastatic breast cancer and the needs of all those living with it, we are not aware of breast cancer at all.

Note:  I am sad to report that Shelli, of the Dirty Pink Underbelly, died from metastatic breast cancer on February 13, 2014. #Wewillnotforget.

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If you are living with metastatic disease (or know someone who is), do you (or do they) feel isolated or forgotten at times?

If yes, how  do we help change this?