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.
Talk with Dr. Shani
It’s my joy to offer you a personal, complimentary Clarity Conversation of up to 45 minutes. You’ll come away clearer about what you’ve been struggling with, what you’d love your life to look like, and the best next steps to get you there.
Everyone should be aware of this broken part of the system. Too many people go home, expecting someone to follow up, perhaps suggesting direction.
The established protocols don’t include that…after oncologists deliver their brand of the nuclear option-they’ve got nothing else. They destroy what they can and hopefully the patient is not part of what was destroyed…BUT their protocols say “wait” 3 months, 6 months, a year…when you go to appointments they are only looking for symptoms…if the crap is spreading inside of you without interfering with anything…they’ll never know it…that’s what happened to us.
Instead of waiting my husband had the marker monitored monthly…until it shot up off the charts. A trip to the oncologist got us a needle biopsy that confirmed it was back…what did the doctor do? He looked at us sadly and essentially said…”…I got nothing…” “more chemo will destroy your bones and more radiation will damage your organs… “…and the locations are so deep inside that surgery would be life threatening…”
So we’re out there on our own…with no help because no other oncologists will take on “clean-up and maintence”.
A trip to one of the biggest clinics in Texas got us: “more chemo, radiation”…when we objecting quoting our first oncologist…the response was: “accept the damage or die”…needless to say…we walked.
A good friend (actually almost a brother/son-yet to be adopted 😉 who acts as a personal trainer offered this observation: “…I work with a lot of clients trying to come back…the ones that make it are their own advocates[or have one]…the ones that eventually die only listen to their doctors and the established
AMA protocols… The ones that are still around fight every step of the way and choose their own path and totally make their own decisions…and keep looking for help that will ‘fit’ them and work”
Thank you for your thoughtful comment, LaNell. For most people the lack of coordinated followup is an inconvenience. For you it became life-threatening. I salute you and your husband for your courage in holding to a path of action that aligns with your values and preferences.
Have you read Radical Remission by Kelly Turner, PhD? It’s a very approachable compilation of interviews of people who have achieved lasting remission from advanced cancer. I’m recommending it to you because it contains story after story of those who realized that they had to forge their own path, rather than stick with the conventional system’s recommendations. You may find it heartening and validating.
Sending you healing thoughts and a warm hug!
I’m “P” and with Shani’s expertise and counseling, I have taken control over my health. Sure I could be diagnosed with something bad. I don’t anticipate it though. I decided to take control of my health by exercising, eating (mostly) organic, meditating, writing, getting out with friends, taking classes – lots of things that are under MY control. I feel pretty darned strong these days. You can too. Thanks Dr. Shani!
Pat, I’m so proud of you for taking charge of your wellness. You’ve come such a long way since that conversation! And thanks for taking the time to comment: personal testimonies provide powerful hope to those still in the struggle. Big hugs!