Call me crazy, but ever since I got the good news that my lung lesions and all of the lymph nodes in the chest and right axilla resolved I have been a little lost. Weird, right?
The first six months of my diagnosis was a crisis flash point. I was thrown into doctors offices, presented with tests, medical interpretations, treatment options. It took over my life. I made a point of telling all of my friends because I thought it would help me to accept things and move forward. It did, but then I didn’t anticipate managing that information network. Then there were more physicians, more options, and the crisis of severe pain from that Tamoxifen induced tumor flare. More drama as it slowly pushed me away from my work and the consequences of having to admit my limitations and hand important work over to others. At the close of those six months, the crisis began to ebb and then . . .
And then there was a void.
It is incredibly difficult to shift gears from a dramatic life-threatening crisis to normal existence. It’s generally termed “the new normal,” but normal implies some regularity and predictability. As I have discovered, there is none of that in a post-/mid-cancer crisis. And, like everything else cancery, I’ll bet I am not alone.
Some weeks ago an individual sent out a tweet. And you know how tweets are, they can take on a life of their own.
It doesn’t matter who sent it, the intent behind it. to whom they sent it, or when they sent it. But it touched a nerve. I know some folks were incensed. On one hand it reminded me of the thoughtless comment I read on a FB rant directed at me. Something to the effect that so what if the royal “they” found a cure, it won’t benefit us (stage iv women). I thought it was a selfish and narcissistic comment. And I could have read the same attitude in this one. But I didn’t.
Rather, I was intrigued. After all, I had found myself in an uneasy lull; a lull for which I was ill-prepared. And I began to wonder how many other women can feel stranded after their crisis. Stranded enough to perhaps say that, sure, we need a freaking cure, but what about all of the women left scarred (physically and chemically), emotionally spent, with lymphedema, neuropathies, or countless other problems. What about these “survivors?”
How do women feel after treatment or within a stage iv lull? How do you adjust? Is there support? Did these women feel forgotten? Do other non-stage iv women, now temporarily relieved of the acute crisis that so irreverently took over their lives, wonder how to move ahead?
I’ve been asking a lot of questions of a lot of women. As predicted, I am learning a great deal. My intention is to share what I have learned with you. In the meantime, tell me what you think:
- Do you feel that there is enough attention paid to the needs of survivors? That is, do you think orgs like Komen who tout cure and survival, lend any/enough support to you after the crisis?
- Do you feel that books on the market about survivorship help or hinder you? What’s missing from the conversation?
- How much does the concern/fear of recurrence or metastasis occupy your thoughts? Has it ebbed over time? Are there PTSD triggers that you experience?
- What does survivorship mean, exactly? Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is–in an odd sense–left behind?