I’ll always remember that conversation with my friend P, after her breast cancer treatment.
She’d opted for chemo after her surgery, so the ordeal had lasted months and cost her her hair. Now she was 9 months out from treatment. To all appearances she was healthy. But her voice sounded weak and small.
“I’m floundering,” she told me.
P and I had met years before at a 9-day leadership program on a ranch in California. I’d seen her climb a rock face. I’d seen her speak up for herself in the face of resistance. Hearing her so tentative and scared was unsettling. It flew in the face of who I knew her to be.
“During treatment, it’s like I was being led through a maze blindfolded. I had no idea where I was going, but people who knew the way were holding my hands the whole time. When it was over they opened the door, let me out, and said ‘goodbye’. When I turned to see where I was, all I could see was a field stretching in every direction. There were no signs or paths. I got scared – I had no idea which way to go.”
Nine months later, she still hadn’t found a path through the field. She was still scared, and overwhelmed.
What P didn’t realize – for better or for worse – was that her experience is pretty much the norm after cancer treatment.
When most people finish treatment, they’re celebrated with balloons and cupcakes.,,and then they’re ushered out the door. The only direction they get is when to show up for their next checkup. (Can you relate?)
There’s a vast, unmarked field between where they are in that moment and that checkup date. In that void, disturbing questions start to bubble up.
Where do I go now?
If I’m not seeing my medical team anymore, who’s going to be there for me?
I don’t want to go through this again. What do I need to do?
(These questions are so common that there are survivor groups and websites named after them!)
There’s only one problem. These questions all assume that there’s someone who’s going to tell you what to do.
That’s understandable. When you were diagnosed, it’s likely you were whisked into treatment before you could even digest what was going on. The system took over, telling you exactly what to do and who to call if you had problems. That framework became your way of life for quite a while. You got used to following your marching orders. You may have even felt a whiff of fear about what might happen if you didn’t follow your instructions to the letter.
But after you’ve been trained to follow orders day in and day out, suddenly finding yourself without instructions is a shock. Like my friend P, you might remain disoriented for months, even years.
How do you get back in control?
I’d venture this:
Don’t assume someone else is supposed to be in charge.
Does that statement make you uneasy? After all we’re talking about cancer. The stakes are high. It’s no wonder most of us want to let our medical teams lead the way.
But once treatment is over, expecting direction from your medical team may be the least helpful thing you can do. I’ll talk about why in my next post, and why this expectation may be causing problems for you even if it’s been years since you had treatment.
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