I rarely log in, but for some reason the other day I did, and I saw that a woman who lives nearby had been diagnosed with an early stage cancer and wanted to hear from neighbors who had survived cancer.
She was getting a lot of bad advice from people who hadn’t even had cancer. Still, I hesitated in responding despite meeting her qualifications of “survival”. I am aware that being metastatic has frightening connotations for many in the breast cancer world, and that some tend to be nervous about us. However, she did say she wanted advice on chemo and hair loss, and after 6 ½ years of living with cancer, I know I am eminently qualified to give that kind of advice. More than that, I was willing to be a friend.
So, tentatively, I offered my services, disclosing immediately that I was Stage 4. I collect vintage scarves, so in my post I offered her some and told her I’d teach her how to tie them. I have numerous books that people have given me to review, not to mention the ones I bought myself, which I also offered. I added that I didn’t want to push myself on her, so if she was interested she could PM me.
She did. I was quite pleased. We exchanged numbers and sent several texts back and forth, setting the upcoming Saturday to meet. I spent the rest of the day going through my closet, finding scarves in the colors she said she liked, pulling out wig holders that I am not using, and cleaning up a charm bracelet that had been given to me when I was first diagnosed - one that had been passed like a baton down through many breast cancer survivors for luck. I’d been hanging on to that bracelet, waiting to find a person to give it to personally. I pulled all the cancer books that had helped me from the shelves, and found a casserole recipe to bring her a meal, found some coloring books and started making her earrings - every bald chick needs earrings!
While I have been able to provide support online through this blog and my facebook page, and I have met some wonderful women living with metastatic cancer, I had not met anybody newly diagnosed in person – at least, outside the infusion center. So, I was happy to be able support somebody I could actually look at in the eye. I even wondered if she’d be curious about my mastectomy scars, and figured I’d wear a button-down shirt in case she wanted to see. I kept thinking back on what I’d wanted to know, and what I needed back in those early days. In the meantime, on that neighborhood forum, people were still discussing cancer, and so I posted my Soul Pancake video, showing how people can live a long time, which I've been told is inspirational.
Later, I logged in the neighborhood conversation again, only to read a public message, “Ann, I do not want to hear a Stage 2 to Stage 4 story” and a terse cancellation of our plans with the generous concession that maybe we could meet after it was “all over.” Which it will be for her, but will not be for me.
Despite having texted privately, she chose to announce her decision to rebuff me to all of my neighbors. I’m now left with a box full of goodies and a sick feeling of public rejection, and the humiliation of knowing the stage of my disease meant I was not worthy of helping. I was too frightening.
I swiftly apologized, and offered to mail her the scarves, but I heard nothing else.
I share this story because it is not unusual in the world of breast cancer. Many women with metastatic disease report being ignored from those who are newly diagnosed. Those of us who are Stage IV are not looked at as inspiring in this culture of survival. The fact that we can go for years, sometimes decades, having treatments but still raising kids, getting out every day, smiling and laughing and sometimes even working is not cause for celebration. All many can see is the end of our story, not the fact that we are still living.
We are zombies to these people; the walking dead.
This is not my first experience with exclusion – my own brother stopped talking to me after I was diagnosed. The reason, I heard through my sister, is he supposedly cannot “handle it.” (He’s been not handling it for 5 years now.) I’m hardly alone in being rejected because of my disease – stories have flooded in of relatives so afraid of grieving that they cut off the cancer patient long before their time, of friends suddenly disappearing and not taking calls. I have heard stories from Stage IV women being told by social workers that they cannot attend a support group as they will frighten the early stage women. A friend of mine described a time when she was sitting on a couch with another breast cancer patient, and as soon as her stage was mentioned, the woman got up and moved to the end of the couch, as if she were contagious.
This cruel behavior is sometimes written off as shock at being diagnosed, but that is merely an excuse for bad behavior. The truth is, cancer does not make for a better person, it makes one become deeper into who they already are. If they are self-centered, they will become more so; now they have an excuse. We shouldn't allow them to justify it though.
We can feel all alone and frightened in this disease, it's true. When we are shunned by our own – by the supposed sisterhood of cancer patients, it’s particularly troubling. Being told we aren’t worthy is one of the more difficult pills to swallow – in a lifetime of pill taking.
Why does this happen so often? Those of us who are metastatic don’t fit into the pink narrative as promoted by major charities and which has become part of our culture. The story is that you get breast cancer, you “fight” it, and then you survive, hopefully to run races and make some money for the cause. We are supposed to be “living beyond” breast cancer, and run for the cure and be warriors in pink. We are not supposed to be in chemo for yearss. We metastatic patients are the losers. The entire pink world is set up so that the heroes of this story are the ones who were never in danger. Those of us who actually face death are often treated as pariahs and as outsiders - we haven't toed the pink line.
What the newly diagnosed don’t understand is you cannot get through this disease without the help of women who have been there, and that support can come from many places. Few have been through as much as the woman who has done 300 rounds of chemo. We metsters should be honored instead of turned away. Let me ask you - who needs help more than we do - and yet we still offer.
No matter the stage of our cancer, we all want nothing more than our suffering to mean something. We want our lives to have a purpose. When we have the energy, desire, ability and chance to help – being rejected may be the most painful slap one can experience.
To the newly diagnosed woman out there, let me say that most of us who are metastatic understand your fear of relapse. The number batted around is that 90% of women who are currently Stage 4 were diagnosed at an early stage. If true, (and it is for me) that means nobody is truly safe. Someday, you may look in the mirror and see Stage 4. Someday, you may feel the rejection you inflicted on somebody else.
What will you do then?