Survivorship:Part 3

A Strange Kind of Comfort, Outcomes and Actions: Survivorship After Covid-19

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The busyness of the world that used to override and erode our decisions and the rhythm of our lives, and drive most of our days, has been tempered to a crawl.  But soon enough we will feel the unrelenting call of corporate globalism once again breathing down our necks.  As it knocks and screams, “come back to the world, you need us”, we will be pulled and torn from the lessons and gifts we’ve been given in these times of quarantine, back to the old way of life.

Now more than ever, as the rosie glasses have been shattered, and we’ve been stripped down to our most vulnerable selves, we shouldn’t get too comfortable waiting for the fragmented systems and ways of yesterday to come beating at our doors again, but instead make the decision to become aware of what comes next, and lean into the pain of what COVID-19 has unveiled, to create something better.

A cancer diagnosis is a 5 phase process.  One day you are living your life knowing that it is possible, but not probable, and the next moment you are living the hell you have only heard others speak about. The shock of phase one is immediate and life-changing, as oncologists, friends and family swoop in to support and provide quick solutions.

Without much time to process, phase 2 takes over as a plan unfolds, treatments begin, meals are delivered and the day to day grind of sleepless nights and the unknowns multiply, leaving one day not much different than the next.

A new routine brings phase 3.  The sun still rises and sets each day, and there is a strange kind of comfort that comes from being cared for; knowing somebody else is working toward a goal that seemingly solves the problems, or if not at least benefits you.  The end is in sight, but the uncertainty is still great enough, the fear covers the clear vision of a future.

The abrupt beginning of phase 4 is in many ways more earth shattering than the shock of phase 1. Although conscious of the fact that one way or another this would end, and maybe even excited and anxious to get back to living, the return of the “normal” resembles little if nothing of what you imagine.  No more quiet reflection, no more comfort from doctors visits and routines.  Only the ticking of the clock, and the cry of society’s reminders that it’s over, and time to get back to life. 

As this new life begins, and days lead to months, phase 5 evolves.  The initial impact is long over, but the long-term side effects continue to unfold as the lack of follow-up post treatment, poor mechanisms for communication between oncology and primary care, and inadequate guidance, advice, and knowledge have thousands of cancer survivors wandering around aimlessly in the aftermath, fending for themselves, and struggling to go back to their lives.

“The thing about cancer is that you never “forget” you have or have had it.  Whether positive or negative there are daily reminders of what you are living or have experienced all along the way.  Few, if any, ever find a way to go back to who they were before their diagnosis, but instead consciously or unconsciously are faced with the decision of who they will choose to be moving forward.  You either take a deep breath or you gasp for air.  You put one foot in front of the other, or you drop to your knees.  You immediately see hope, or are sucked into perpetual darkness.  Regardless of your beliefs or the strength of your faith there are always those moments, even if brief, externalized or internalized, when you wonder, fear or flat out freak out about what this might mean for you or your loved ones.  Some of us recover quickly from this initial blow and work just as fast to re-normalize, while others never seem to find their feet again.” [Entry from blog 2017]

What society doesn’t yet understand, but will hit like a tsunami when this quarantine ends, is that the “disease/pandemic” itself is only one small piece of the puzzle, a symptom of something much greater that if not dealt with, will cause more destruction in the coming days, months and years than anything we have experienced to date. 

We are still sitting in phase 3, moving like a freight train towards phase 4.   Being “alive” on the other side of something so great is just the beginning. Humanity and our existence depends on us not just surviving catastrophes, but thriving beyond them, and this doesn’t just happen on it’s own. 

The fragmented systems of cancer survivorship and what we’ve learned could be the key to unlocking the solutions to how we handle the survivorship of all people after this pandemic.   

The long-term success of individuals and our nation, after our world returns to active, will not only depend on our perspective, but  how proactive we choose to be or not be today, in handling the symptoms, side effects and the potential fall out that will occur in phase 4 and 5. 

The biggest hurdles I have personally faced throughout the past ten years of my stage IV cancer survivorship are; 

  1.  A lack of resources, information, care and communication between all parties (everything is scattered everywhere, nothing is easy to access, and everyone has a different answer for the same questions)2.
  2. Reconnection of my role in society and with family
  3. Assimilating back to work and my career
  4. Feeling safe to become social again
  5. Being aware and proactive that a recurrence is a possibility
  6. Financial toxicity due to long-term side effects

So what are the roles of the government, businesses and the people as they relate to the economy, our relationships and our health?  And how do we measure the outcomes, and teach people to thrive?  

The landscape of the future will continue to shift and change, but creating a Gold Standard will help us bridge the gap from where we are today, to successful Survivorship moving forward.

We need to focus our efforts and awareness on; identifying the key elements, barriers and needs of communities and individuals, and how best to address them, establishing strong referral networks, community partnerships, and focus groups, and continuously reevaluating our work, to keep a pulse on everything from emotional and physical well-being, to social and financial well-being, and the ongoing needs that will arise.  

We entered this pandemic as a society distracted by the busyness of consumerism, and consumed with self, quick fixes, and fast solutions.  But we’ve been awakened to a new way, and possibly a better way, which has reminded us that life is sacred and worthwhile, but also provides us with a chance to envision a new human story.  A beautiful sunset, once covered by smog, now vibrant with color on the horizon. 

We stand on the edge of a new frontier, and this is an invitation to take this incredible gift, and move forward with the awareness and the intention to create something much deeper, much more sustainable and meaningful; on purpose. This is the end of another new beginning!

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