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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?

 

 

 

 

 

 

16 thoughts on “Living With Metastatic Breast Cancer & Isolation – A Follow-up

  1. I am fortunate to have a support group for Stage IV only. It’s been in existence for some 20 years. It is free, and open to anyone. It’s not just for patients at the center where I’m treated. The facilitator is a healer in the truest sense of the word. She is a social worker, married to an oncologist, and has had two primary breast cancers herself. I love my group, and the members. It makes it so much easier to face this.

    1. Amy, It sounds like you have a wonderful support group there. I can only imagine how much it means to you to be able to speak openly in a group where everyone truly understands. Thank you for sharing.

  2. When @CJMeta of Metavivor, or CJ Corneliussen-James, was on our #BCSM tweet chat she stressed the incredible need for support for women with mets. The internet makes that connection like nothing else can. You don’t have to be dressed and “go out” to a support group. Any woman with mets can use the #bcsm hashtag for support and community.

    Illness isolates. Thanks for bringing attention to this and sharing these incredible stories,

    jody

    1. Jody, Yes, I remember that comment CJ made. It’s so true, support is critical for anyone dealing with cancer, but even more so for those living with mets. Illness isolates for sure and the internet can be a God-send in helping with that. Thanks for commenting, Jody.

  3. Several members of my breast cancer support group have mets. The group has existed for over 20 years and soon we will confront the loss of two members. We have others who are dealing with lifelong treatment and are doing well at this time.
    I am conflicted about the pink bc culture. I try to determine how much of the money collected is going to needed research before I buy anything but my granddaughter seems to feel that by buying pink stuff she is supporting my fight. I don’t want to quash that belief.

    1. Meg, I’m glad your support group embraces those living with mets too. Sometimes it can be difficult for a person with mets to even attend “normal” bc support groups. That’s really sad. I understand your conflicted feelings about pink; you aren’t alone there. Thank you for commenting.

  4. Hi Nancy,

    Your last post struck a nerve in the breast cancer community, and the comments you posted here simply broke my heart. This is such a needed conversation in the breast cancer community — actually in any cancer community, as mets is mets, whatever type of cancer it is.

    I don’t think breast cancer itself is celebrated. I think that the “survivors” are celebrated as heroes. This culture is harmful, as it isolates those who are dying and who don’t make it, and it also isolates the “survivor.” It’s a terrible burden to bear to be society’s hero, an “honor” we really don’t think we deserve.

    I survived thus far from sheer luck, as far as I’m concerned. Luck. Nothing heroic about that.

    1. Beth, Yes, I was a bit astounded by some of the comments and that’s why I had to share some of them in this follow-up post. You make a good point about the need for mets support in any cancer community, so true. I agree with you about the celebratory hero persona often given to survivors being sort of misplaced. Luck certainly has a lot to do with it, as you so clearly stated. Thanks for your thoughts, Beth.

  5. I felt so understood with the living with mets post. It is exactly how I feel. I was 27 at diagnosis and have experienced all of the feelings expressed. I have been living with mets since eighteen months after initial diagnosis,so seven years.
    On many occasions I have almost felt like I have to apologise to people when introduced to them and the enivitable question is asked about career. Yes I have mets, no I won’t get better this is not what people want to hear. They need the feel good stories. This alarming discovery often leads to a halt in conversation.
    A few years ago a friend and I attended a residential two day course for young women with breast cancer. We were the only two ladies with mets and were avoided by 95% of the other ladies.
    I understand it is their fear of mets, but I feel it’s a sad situation it has become a them and us situation.
    My friend and I were devastasted. It set us back for a couple of months. The rejection by the women who we thought ‘got’ us was very damaging.
    I have tried to remember back to the short time when I only had primary and wondered if I would have responed in a similar way. All I know is that I was fearful then and sometimes I am gripped by this but I believe we all need each other.

    1. Emma, Your comments just break my heart. When you are ‘rejected’ by those who should be your greatest supporters, well, I can only imagine how badly that feels. I’m so sorry. Fear cannot and should not be an excuse. Thank you for speaking out. I wish more would do the same. We need frank discussion on this.

  6. Nancy,
    Oh, how I relate to your post. It is unfortunate that there at times seems an invisible line “us” vs “them.” The survivors who are dancing with NED and the survivors who are dancing with METS. The question I find myself struggling with is…what action can I take today, so my friends who are living with METS, can feel my love and support–not rejection by fear. As soon as I am done posting this comment, I am emailing your post to our local cancer facility. Thank you for your post and prompting to action!
    PS. And I agree…the disease shouldn’t be celebrated–but I do believe that all who have walked the journey–should be!!

    1. Kim, You describe it well – the invisible line that is drawn between “the survivors who are dancing with NED and the survivors who are dancing with METS.” That’s powerful. I want to erase that line, or at least make is less pronounced. We can’t pretend we aren’t afraid, but we cannot hide behind the fear either. Thank you so much for taking action and saying you are including my post as part of your action, well, I’m humbled. Thank you.

  7. Nancy,
    I am remiss. I knew this conversation was taking place over here and I am always in awe of how you are able to be so spot on and powerful while keeping your emotions raw. Me? I just get on the Rant Wagon. I guess those pink boxing gloves in the picture belong to me (No, I don’t own them but then, you know me already and you know I wouldn’t give a dime to anyone as Ronnie said “pushing pink $_iT to $h!_he__ds.”

    The comments are breaking my heart to read. Yes, I’m NED but I am STILL on the team. I just read the transcript of the October bcsm. I’m going to reprint it on my blog. Rachel, Susan and Katherine were the “guests” and I think the grief of Rachel’s death, Susan’s death and my friend Atalie’s death in a span of hours/days is now hitting me hard….

    I love your writing and I love the way you can reach people and touch hearts.

    xoxoxo

    1. Ann Marie, You are not remiss, not possible. Keep up your passionate ranting. There’s much to rant about it seems. Thank you so much for your kind words of support.

  8. Thank you so much for your blog, Nancy. I was diagnosed with triple negative cancer in 2000 and then ovarian cancer in 2006. I do not have mets and am a vigilent cheerleader for those challenged with breast cancer. Remaining postive and hopeful are important. But your thoughts and feelings are equally important. I posted them on my Page, informing family and friends that there is another side of “living with breast cancer” that is a lonely and frightening road indeed.

    1. Leslie, It’s great to meet another vigilant cheerleader! However or whatever a person is feeling – those are the ones in need of validation. You’re so right about that. Thanks for sharing on your page and for helping to spread the word about the other side. Thank YOU!

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