When I was at my chemo teach, I felt overwhelmed by the information about the toxic, life saving, medication I was signing up for, AND I recall feeling this sense of- ‘WOW- they have thought of everything’. You know…
Constipated? Take stool softners
Nausea? Take Ativan, Zofran, Compazine
Can’t sleep because you are too anxious about the fact you have cancer, too nauseous, in pain, hyped up on steroids? Take Ativan, melatonin, listen to guided meditations…
No white blood cells? Take Neulasta or Neupogen
Chemo shredded your red blood cell count? Have a blood transfusion.
The list was long, the solutions were concrete, and at each appointment your treatment team surveyed you about the most common side effects, concerns, red flags that your body was not managing the treatment well. Your blood work told the story of how well your body was coping with everything. Carefully monitored, hopefully you had a sense of safety even though you were facing a life threatening situation.
There is nothing fun about being in active treatment and the number of appointments you have feels like an unending process of being poked, prodded, and evaluated. Normalcy seems like a thing of the past, yet when treatment ends, you don’t just walk back into life as it was. This is likely something you are somewhat prepared for, as it is a common point of discussion in the cancer community.
What I was not prepared for, and I am certain that I am not alone in this, was that unlike the beginning of treatment, the notion of concrete problems and solutions seemed to evaporate. Nothing seemed to be clearly plotted out, beyond follow up medical appointments and tests.
My providers were caring and responsive if I brought up a concern, but they no longer seemed to have it all figured out. Their uncertainty when coupled with the fact that now I needed to not only process what had happened to me, manage the uncertainty I felt about the future, pick up the pieces of my life, was unnerving.
There was a list of areas to address on the survivorship plan, such as: nutrition, exercise, physical signs to monitor for signs that the cancer had recurred, and encouragement to do so. Yet the tone had changed dramatically- ie super generic rather than driven by identification. This left me with that feeling of being stranded all alone in a boat with oars that may not be strong enough to last the journey back to land- if I could even figure out in which direction that land might be.
I loved my treatment team, and I still do, but as I did make my way from being stranded to finding land once again, it became more and more clear to me what the issue was. My providers are medical experts, they are brilliant when it comes to diagnosing and treating cancer. I refer people to them all of the time.
But the members of my treatment team are not mental health experts, and therefore are not equipped to be our only guides through post treatment life. Post treatment life has short and long term physical consequences that cancer treatment brings, yet it is the psychological, spiritual and emotional challenges that often linger the longest.
Part of the challenge of post treatment guidance is the fact that we are all unique, and therefore are all uniquely impacted by the experience. The side effects of most medical interventions are well known and therefore much more predictable, lending them to more concrete solutions.
My years of practicing psychotherapy helped me to craft a map for healing, and I have used that experience to create tools that others can use to understand their post treatment needs and to build their own plan. I will soon offer this assessment tool to my community and a webinar- Back to Life, Back to Reality: Decoding Cancer Survivorship, in which I will guide the group through identifying and creating a personalized post treatment plan. Stay tuned- when I am ready, I will announce it on the website and social media links.
Until then, hang in there! Solutions may not always seem as concrete or easy to identify and we may need to come to terms with things that cannot be changed. Reaching out for support before we get to the ‘can not take it one more second’ zone is one thing that you can do.
-Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.