It's funny, but as I continue plodding along in my journey with breast cancer, I feel less and less like fighting about anything. Hell, I even used the phrase, "journey with cancer" which would would formerly have me up in arms.
My, how I have changed.
So when the blogosphere exploded with the latest cancer controversy, I immediately decided to ignore it and maybe upload more photos of my dog.
I'm having second thoughts.
The controversy involves a man, Angelo Merendino, who took some absolutely beautiful photos of his wife as she went through her treatment and died from metastatic cancer. Apparently, these photos were exhibited in a building called the Gathering Place, and because they upset the people who, uh, gather there, they were taken down. That news went viral, and everybody online who is involved with cancer in some way exploded with anger, feeling that cancer patients were being dissed or shoved aside. They were encouraged to like this gentlemen on facebook for a show of support.
Go ahead, his photos are beautiful; he honored his wife. I like him.
Gayle Sulik, his friend, did a post about it called "The Battle They Don't Want to See" saying about the pictures: "They are a vision of breast cancer that is too often sugar-coated with platitudes, sassy t-shirts, fun-filled fundraising galas. For some, this reality is too much to bear. But until we as a society are willing to see cancer for what it is, our capacity to support the diagnosed will always be limited."
Her post was tweeted and shared throughout the blogosphere as another example of society wanting to ignore the reality of breast cancer.
And yet, an important point is being overlooked.
And that that in this case, the ones who feel that the reality of these photos are "too much to bear" are the ones who actually have to bear the disease. It isn't society who doesn't want to look, it is people who are dying from cancer themselves who don't.
Speaking as one of the diagnosed, and one of the ones diagnosed with metastatic cancer, I agree with Gayle's overall premise. In fact, almost exactly three years ago, as a cancer newbie not knowing what was to come, I named this blog "I hate pink" for that very reason - I didn't want to be part of the pink culture that prettifies cancer. Even back then, I knew it was ugly. I wanted to detail it with words.
Yet, since I have become metastatic, since I am dying of cancer, my original thoughts have expanded. If you look deeper into the story, you will see that the photos that were taken down were exhibited at a place called The Gathering Place that describes itself "as a nonprofit, community-based cancer support center to fill an unmet need in the greater Cleveland community. The programs and services offered address the social, emotional, physical, and spiritual needs of individuals with cancer and their support network." Reading deeper into the site, they are focused solely on nurturing those with cancer. They have classes, such as movement to help with low energy, nutrition information, caregiver classes, and emotional support groups.
In reading what it is they do, and after hearing the photos upset some patients who go there, I think it is wholly appropriate that they took the photos down. The better choice would have never to have put them up to begin with, but given the nature of their mission statement and their goal to support the emotional needs of cancer patients; given that they got complaints from those with cancer, I agree that they should not have photos of a dying woman displayed in their lobby.
As a woman with metastatic cancer, I have nowhere to go where I am not confronted with the magnitude of my disease. In my personal life, I comfort my family, telling them I'm okay, it'll be okay. Weekly, I have chemo. Monthly, I see an oncologist. It's always on my mind. I am in pain and exhausted. I will forever be in treatment. I am going to die, and I have paperwork to do, things to finish. I look at photos of my own deterioration, without even wanting too, just by flipping an album. I don't know any other terminal people. I rely on me.
I am faced with this illness every day, every night, without respite. I am not really welcome at support groups as I frighten the lower stage women - I am, after all, their worst nightmare. Their concerns are not my concerns. I can find some relief and companionship online but even on the forums for Stage IV cancer, we have the family members of cancer patients turning to us for comfort and information and all too often describing their family member's death in vivid and disturbing detail - never realizing or thinking they are asking for support from women who will soon be in those same deathbeds, unseeing and unblinking and moaning in pain, same as their loved one.
If I had been able to find a place like The Gathering Place that gave me comfort and support, maybe I wouldn't want to see those photos either. That doesn't mean I don't think they shouldn't be seen, or that I bury my head in the sand - not at all. I've looked at them, and they are beautiful. My regular readers know I have always faced the truth. But, the Gathering Place is designed for cancer patients, to find healing and comfort and a sense of peace. Maybe even a little hope. Seeing graphic photos of a woman in the process of deterioration and dying from cancer every time you walk through the lobby, photos described by Gayle as filling "many of us with deep sadness and a sense of dread" has turned out to be emotionally upsetting for many who are suffering with cancer.
I am not saying the photos aren't beautiful or touching. I'm not saying they shouldn't be shown. In fact, a few are on on CNN's website. They will be in Gayle's new book.
It isn't the photos, it's the place. And, it's all to easy to dismiss a cancer patient who doesn't want to see them as "putting their head in the sand" but you know what? Why shouldn't we have a place where the sand is warm and comforting if that's what we want? We have too many people telling us how to handle our disease as it is.
What I'm saying is that maybe our "capacity to support the diagnosed" as Gayle says, includes giving us, the diagnosed, a tiny space - just one - where we aren't always compelled to confront our future.
Seems to me if liking something on facebook provides support, than "The Gathering Place" deserves that same honor.
As do I.
XRT and gamma knife
2 days ago