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

Two years ago this week was when my first domino toppled, leading to a chain of events that is still playing out today. Remembering all the approaching dates, as well as pondering the overwhelming response to my recent mets post has resulted in a few nights of restless sleep of late. I can’t stop remembering and I can’t seem to get some of the comments left on that particular post out of my mind.

If only there was an on and off switch one could flip at night guaranteeing uninterrupted slumber…

Whenever I awaken during the night with troubling thoughts, I do what I always do; I determine I will write about what’s on my mind.

Hence, I decided to write this follow-up post. As for the various cancerversary dates, I’ll share about those later.

I was a bit astounded by the response to that particular post which addressed the sense of loneliness and isolation so often felt by those living with metastatic disease. That post generated more traffic than any other previous blog post.

I was very moved by the response, as well as by the heart-felt comments. I felt compelled to share some of them here.

The comments left offer more proof that it is indeed true the mets community far too often feels invisible. They offer more proof of the pink ribbon culture failure to serve the needs of those living with metastatic disease. They offer more proof this segment of the breast cancer community longs to be better heard and better understood.

How can I not share?

How can we not listen?

Please read a few of the incredibly candid comments and see if you, too, are not moved.

 I have MBC with mets to my spine and live in constant fear of the unknown.

When a disease is celebrated, something has gone terribly awry. How exactly do we celebrate metastatic disease? It’s the mirror no one wants to look at for fear their reflection is there. Even the data collectors count only the diagnosed and the dead, never those living with it. Exactly how more invisible can it get?

Within our sisterhood, we are ostracized. We cannot go to support groups because we scare the early stage women – we are their worst nightmare; forever in treatment until we die.

We are subjected to comments and questions, sometimes ones that imply we have done something wrong to be Stage IV.

It hasn’t even been a year yet since I felt that lump and thought “no problem, breast cancer isn’t fatal anymore”.

Personally I’ve come to hate October and the constant bombardment of media ads which only portray…early stage disease success stories.

I was diagnosed with metastatic breast cancer at the age of 29. I am grateful for the amazing support network of family and friends that I have. However, this disease – particularly for those of us that are very young – can be extremely isolating. It has been very difficult for me to relate to early stage survivors – as they cannot possibly understand what living with mets is like. It’s also sometimes hard to relate to women with mets that are twice my age – they were able to have children and raise them – they were able to have a career – move into their dream house – have many years with their spouse, etc.

Your words really bring home the ironic aspects of pink ribbon culture: it fosters this sense of ‘you’ll be fine’ if you’re diagnosed, but turns its back on you when you’re not.

Thank you, Nancy, just thank you for a… post that illustrates so well the divide between the rah-rah survival sisterhood that the public persona of breast cancer has become and the reality for those of us living with metastatic disease.

I’m living with metastatic BC and I grieve daily for my kids and for my lost future. Having MBC is like being in a tunnel that keeps getting smaller as your options narrow. I despise the perky positive messages put out by fundraisers about how we are going to cure cancer, not likely since only 2% of research funds go to metastatic disease. How can you cure something when you don’t know what causes metastatic disease and how to stop it? Since 30% of women with primary BC go on to metastatic disease it is in everyone’s best interest to talk about it more and push for better research.

After reading the above comments, as well as all the others, it’s more obvious to me than ever this feeling of isolation is very real to many living with metastatic disease. It pains me to think this is true, but until we listen to the voices of those living with metastatic disease and acknowledge this reality, we cannot change things.

And things must change.

If you are living with metastatic disease, do you attend (or have you ever attended) support group meetings? If so, have you ever felt ostracized in any way?

Do you have suggestions on how to decrease the sense of isolation many feel?

Do you feel breast cancer is almost “celebrated” in pink ribbon culture?