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Does Living With Metastatic Breast Cancer 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 about a year 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?

Featured photo via Ronnie Hughes & Being Sarah & used with permission

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

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Living With Metastatic Breast Cancer & Isolation - A Follow-up

Lyne

Tuesday 3rd of November 2020

Nancy, reading this post for the first time, and on the eve of my mTNBC diagnosis, I realize that I am not abnormal in feeling lonely as I fight my silent battle with this deadly disease. I was given 24 months, half of which are now gone, and as much as I try not to think in terms of time, as much as I try to live my life as much as i can, with the limitations I have, I cannot help but think of how lonely I am. This quote from Ann is the most powerful thing I have read. The reality that I have been living for the past twelve months. I am agree that I have to grieve my life while living it, and I am angrier that my loved ones also have to go through this grieving process now, and again when I die. It makes me so sad, and I close myself in, not complaining or showing anger or grief, so that I don't make it even harder on all of us. And I feel lonely... Thank you for sharing again, it means a lot to know that I truly am not alone in what I feel, especially with Covid further complicating things and isolating even more. I'm so glad that I'm not crazy for feeling this way.

Nancy

Friday 6th of November 2020

Lyne, You are definitely not abnormal or crazy. I'm sorry you have felt so lonely. I agree that Ann's quote is quite powerful. Do you follow her blog at all? She's been living with MBC for quite some time now, which in itself is encouraging. You have my support if that helps at all. Thank you for sharing.

Abigail Johnston

Monday 12th of October 2020

I think a big part of the issue and why we end up lonely is compassion fatigue. The experience of MBC is a marathon and not everyone is equipped to carry that burden with us long term.

Nancy

Tuesday 13th of October 2020

Abigail, Sadly, you might be right. But if a person truly cares about someone with MBC, wouldn't they want to learn how to get equipped? Or at least try? Compassion fatigue seems like an excuse.

Marcia

Wednesday 28th of May 2014

Nancy, As always a thought provoking post! If it's not sexy,pretty or funny it does not get attention.. Society's refusal to acknowledge and embrace those with metastatic disease is in IMHO because it's too uncomfortable, painful, and scary and people don't like to be reminded that they are vulnerable to cancer...especially cancers that alter ones bodies, no matter how hard one might have pursued being "pretty or sexy" I don't count myself among those who prefer to see only the "pretty" in the world.

Nancy

Wednesday 28th of May 2014

Marcia, I think you're exactly right. If the metastatic community is not included in the awareness or is not feeling the "embrace", then certainly this is a failure on many fronts. I see this changing, but it's a slow change. Too slow. Thanks for reading this earlier post and for taking time to comment.

Claire

Thursday 21st of November 2013

Your post really resonates with me. I've been living with metastatic breast cancer for over 6 years. Ups and downs, but I'm grateful to be alive. This year the NY Times ran a column about people living with BC and invited contributions. Each story was upbeat. One woman whose husband had left her triumphed over that adversity. Everyone else's story was strong and brave and happy. Sooo, toward the end of Pinktober I ran my experiment. I sent in a contribution which was deliberately downbeat. No great life lesson, no triumph over adversity. Just the unvarnished truth. My contribution has not been published, but several "upbeat" ones have been published since I made my submission. Yeah, I know my grand experiment isn't scientifically valid as it was a sample size of one. But this anecdotal evidence supports my belief that unless it's all shiny happy people holding hands the story is suppressed by the pinksters.

Nancy

Friday 22nd of November 2013

Claire, Sadly, I think you're right. There is a lot of hesitancy to cover the not-so-upbeat stories. It's too bad and in the long run it's also harmful. The entire spectrum of the disease must be presented if there is ever to be a clearer understanding about it. I'm sorry your experiment brought the results you expected... Thanks for sharing.

Elizabeth J.

Tuesday 27th of August 2013

I am the Elizabeth who posted above. I got news last week that I am now in remission. I'm happy. I'm grateful. I hope I stay in remission a long time, forever would be real nice. But, I have been warned once it is in your bones, recurrences are common, so there are no guarantees. However, it bothers me that so many of my friends and family seem to think cured and remission are the same thing. They are shocked when they find that I still am in hormonal therapy (pills and shots) and that I still will be seeing my doctors so frequently. Maybe that is a big part of the problem? People around you assume remission means cured. They don't realize you live with that threat of recurrence over you.

Nancy

Tuesday 27th of August 2013

Elizabeth, Some guarantees would be nice, wouldn't they? I'm so glad you received some good news. We'll take all the good news we can get, right? And yes, sadly, remission is not the same as cure. We have to keep educating others, so more will understand the big picture - which includes mets and all.

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