The power of survivorship.

According to the National Cancer Institute there are 16.9 million cancer survivors in the United States.  Equal to the population of New York, Massachusetts and Rhode Island combined! This represents 5.0% of the population.

The number of cancer survivors is projected to increase by 29.1%, to 21.7 million, by 2029. 

Astounding statistics. 

The first Sunday in June is National Cancer Survivors Day. Today marks the 32nd annual celebration of life for survivors. Celebrations are happening around the world declaring there is life after cancer. Bringing hope and inspiration to those recently diagnosed. 

Hope and inspiration. This is what I wish to bring to my fellow cancer survivors. Because I know that being alive is more than being cured.

I recently read the results of a partnership project between the National Cancer Research Institute and the James Lind Alliance.  The project involved two surveys which attracted more than 3500 responses from patients, survivors, health and social care professionals.  The goal of the project was to define the top 10 research priorities aimed to help people live better with and beyond cancer.  I was very excited to read that Research Priority # 9 was also the focus of my work that I wish to share with the world. Number nine reads:

What specific lifestyle changes help with recovery from treatment to restore health and improve quality of life?

Carved By Cancer is the work I share and it aims to offer survivors lifestyle changes that restore health and improve quality of life. Provided via the new online social platform, Mighty Networks. There is wisdom from luminaries in health and healing fields such as positive psychology, post traumatic growth, neuroplasticity, sexual empowerment and trauma.  The information is offered in teachings that guide members through the phases of healing in survivorship.  It is a safe and unique place where the collision of knowledge, shared experience and support merge to enhance the healing process.

In honor of National Cancer Survivors Day, I share this blog post about the phases of healing in cancer survivorship.  These phases are explored more fully on the Carved By Cancer Network and you are welcome to join us there at any time. We can navigate the world of survivorship together. 

The diagnosis and treatment of cancer is often described as a roller coaster ride. Makes sense, right? 

Strapped in.

Sent into terror of grand highs and significant lows.

We lack complete control of our surroundings. 

Until we emerge – woozy and tattered.

Were you able to ride with arms up and eyes wide open? Not me. My hands gripped the bar tightly and my eyes were sealed shut. Praying the ride was a dream. 

Whatever the method, we did it! Congratulations! 

Only after, with our feet planted on solid ground, are we able to look back in amazement. And marvel… marvel at our courage.

We slowly reorient. 

We quickly realize that life is different but not quite able to pinpoint what is different, and why. 

We rise on wobbly legs in a new body. One carved by cancer – changed forever by our unique cocktail of chemicals, radiation and surgery. 

There is such enormous vulnerability inherent in this. 

It now takes bravery to shift into the future. To begin planning long term again. To regain control and stability in this new changed world we stand in.

The necessity of cancer care follows us into survivorship. There are extra phases of healing to move through. These three phases: recharge, rebuild and rewire do not need prescriptions or chemicals. And unlike the roller coaster ride we exited, we have control of what happens next. Let’s explore these phases together. 

Phase One: Recharge

Cancer protocols are designed to poison the bad cells with powerful chemicals and dangerous rays of radiation.  As advanced and refined as treatments have become in the last 25 years, it is understood that good cells are collateral damage of the treatment process.  This saps our very constitution of vital energy. Additionally, treatments made it difficult to eat and sleep. Both integral to our physical and mental defense and recovery systems. 

Exhausting. Exhausted is how we emerge from our treatment. 

It is now time to recharge. This may take a week, a month or a year. The length of time depends on many things including the state of health before diagnosis, age, type of cancer, intensity of treatment, attitude and support system 

This is a tender time that requires self-compassion. Because we landed in a confusing world. A cancer paradox exists as we wish to show our loved ones we are “fixed”. We expect ourselves and others expect us to “get back to normal”. But normal no longer exists. We experience panic and anxiety of reoccurrence and we live in a body we no longer recognize. This confusion is a natural part of the process. Our sense of security and safety were undermined.  Our future hopes and plans thwarted.  Our life changed irrevocably.  

We begin to establish healthy habits that support our bodies healing. Switch our meds to Mindfulness, Exercise, Diet, Sleep and Support. Often, we experience a sense of abandonment, and this is normal. For months we were cared for by a team of people that held our welfare in the center of their radar. The time between doctor visits begins to stretch longer and we must fill the gap with a new community of support.  This is where the Carved By Cancer Network steps in to offer survivors a place to gather, share stories and gain access to content not found anywhere else.

This first phase also finds us feeling a sense of awe, wonder and gratefulness. We marvel at the courage that got us here, acknowledge our own personal strength. Our experience may have invoked a new appreciation of life, and with it, new possibilities. Helping us reorient our internal compass of control. Igniting positive emotions that help lift us from our exhausted slumber.

Phase Two: Rebuild

After spending the time necessary to rest and recharge, it is now time to rebuild. I can’t help but conjure up the image of a flattened home, taken out by an act of Mother Nature. There is now an opportunity to rebuild a stronger and more secure home. In a way that will withstand future storms. 

Rebuilding allows us to write a new story that captures our ideal self and how we wish to walk forward in the world. Using the power of narrative to invoke hope and cultivate optimism. Both proven motivators in goal setting and action initiation.  This step allows us to identify and move beyond our “old” stories and honor our resilience in living through them.  We introduce strength building and mindfulness exercises.

Skipping this phase of rebuilding could result in falling back into old patterns. This step requires time and attention. If not, old habits may rise and we may remain in situations or relationships that do not bring out the best in us. This may happen months or even years into survivorship. 

Cancer does not discriminate. Gender, age, race, job title…all invisible. Each one of us had our sense of security and safety undermined. We question, why am I still here? What am I meant to do? There is a deep desire to live authentically. Authenticity is a connection we make when we align internally and externally.  No-one can give it to us, there is no prescription or pill. We must do the work. 

Phase Three: Rewire

Surviving cancer offered me a mental bionic ability to restore to a new level. As survivors we have an urgency AND an opportunity to rewire and grow into a better version of ourselves. 

Rewiring is all about connection and trust. 

Reconnecting to our body involves addressing self-image, acceptance and discovery. Think about that awkward time of puberty…. yeah, you got through that too 🙂 Our bodies are forever changed and our sexual needs change also. This is a time of discovering how our body functions, our limitations and new ways to bring it pleasure. Honest communication is essential for us to speak our needs and desires to our partners. 

Regaining trust in yourself. The threat of the cancer returning is real, no matter what others might tell you to the contrary. I know this. As we rewire it is important to live in the AND. Acknowledge both sides of the same coin.

I feel threatened AND I am here – alive, breathing. 

I am terrified AND I understand in this hot second I am safe. 

This is the practice extending from the powerful research of neuroplasticity. We have the ability to rewire, and form new neural pathways in our brain. When we savor the moments we experience health, and take the time to feel them viscerally it allows us to restore a sense of safety. Milestones and anniversaries are potent reminders of what we have been through. They deserve to be celebrated AND we might also be flooded with memories.  The cancer experience cannot and should not be erased. Yet, over time each of us can begin to remember it differently. From a place of empowerment and personal strength.

As we rewire we regain mastery and control of our lives in a way that makes us feel whole again. I invite you to be part of a revolution of survivors who understand that being alive is more than being cured.  Join the Carved By Cancer Network. Allow it to become your community to travel the path of healing in survivorship. You will have access to information and experts for each healing phase.  You will find support from your peers.  You will be empowered from a foundation of research-based science in the fields of positive psychology, post traumatic growth and neuroplasticity.     

It works. 

I’m living proof.