A Common Story

Why Journey to be FREE was founded.  Hear from our founder…

Cancer is a life-changing disease that presents physical, psychological, emotional, spiritual, financial, and daily life challenges for the person diagnosed and the whole family.  The cancer journey can be long, lonely, daunting, and take a toll on one’s body, mind, spirit, and life. 

Cancer has consumed my life since I was 15 years old.  Cancer has taken the lives of my grandparents, aunt, co-workers, friends, mentor, and mother.  As the caregiver for my mother during the four months after her diagnosis, I witnessed cancer’s destruction on the human body and spirit.  At the age of 33, a wife and mother of two young children, I heard “you have cancer”.  I was fortunate to survive my diagnosis and now live with lymphedema, a permanent side effect to treatment, which reminds me how blessed I am to be alive and a second chance to live a purposeful life each and every day. 

Let me share a very common story with you.  Picture this…

You hope to never hear these words, but you just heard “you have cancer” from your doctor.  You suddenly become numb.  Your brain immediately shuts down.  You don’t know what to say or feel.  You are sitting across your physician’s desk with that “deer in the headlights” look. 

Your doctor is still talking stating survival statistics, treatment options, clinical trials, and suggesting a second opinion.  You see your doctor’s lips moving, but you don’t really hear him/her.  You cannot process this information because your mind is consumed with its own self-talk of “how did this happen?”, “why me?”, “what did I do to deserve this?”, “how do I tell the kids?”, “am I going to die?”,I don’t want to die.”, etc., etc. 

You leave the doctor’s office feeling overwhelmed with the overload of information. Your body suddenly fills with emotions of fear, worry, uncertainty, anxiety, feeling powerless, and then you burst into tears.  Your life is about to change – you just don’t know how yet.  You feel alone and unsure how to proceed.  What is the best treatment option?  How is this going to affect your loved ones?  You wonder how you’re going to pay for treatment. You decide on your doctor’s recommended treatment plan but have to wait several weeks.  In the meantime, your mind races each day fearing treatment side effects and the outcome.  The waiting is unbearable; you just want to get this over with.  You wonder how can you prepare for what lies ahead?

You undergo treatment – doing your best to be compliant with the treatment protocol and deal with side effects.  You feel safe and secure because you are surrounded by the care of your oncology team meeting all your medical needs.  But, who’s meeting your emotional support and other non-medical needs?  Who can help with the side effects of treatment?  Where does your spouse, partner or children go to meet their support needs?  As a family, where can you go to help you all through this difficult life situation and soften the negative impact of cancer?

It is now five years later and the day you have been waiting for finally arrives.  Your oncologist tells you that “you are cancer free”.  You are then released from care.  Yaaaay!!  However, you have one limb which is much larger than the other and you do not know why.  Your oncologist tells you that you have secondary lymphedema, which is a permanent side effect to your treatment. You just hit another  crossroad along your journey.

After the excitement of hearing “you are cancer free” settles in, you suddenly feel abandoned, vulnerable and no longer safe. Feelings of loneliness, fear and anxiety once again overwhelm you.  You begin to ask yourself “what do I do now?”, “how do I prevent a recurrence?”, “will the side effects eventually go away?”, “what the heck is lymphedema?”, “how am I going to pay the hospital bill?”, “will I be able to return to work?”, “how do I move forward from here?” and “will my life return to normal?”.

You do not receive a survivorship care plan, after-care support, self-care instructions, or any guidance as to what to do next.  Just “follow up with your primary care physician and get regular cancer screenings.”

You are left on your own to navigate your way to wellness, cope with a whole new set of emotions and concerns, deal with permanent side effects, figure out how to stay cancer-free, move forward in life, and return to some sense of “normal” – whatever that may look like now.  You are haunted by the fear of a recurrence. You are unsure if you will be able to emotionally or physically go through this ordeal again.  No one understands what you are feeling.  Your friends and family members think your life just returns to the way it was before the diagnosis and treatment.  It doesn’t!  You wish you knew where to go to get help through these next phases of your journey – recovery, return to wellness, and long-term survivorship. You feel all alone and in the dark… 

This was my story 25 years ago. It is still a vivid memory.  My story is not unique and, sadly, has not changed much over the years.  It is a very common story still being told by many diagnosed with cancer today.  It is time those facing cancer have a new story to tell. 

“Cancer” still consumes my life, but differently and in a positive way.  With the steady rise in cancer diagnoses each year, it is my personal mission to make sure that everyone affected by cancer have access to the support, education, social connection, resources, wellness programs, and community they need (and want) to help move through a very difficult time in their life and have the best possible positive experience, at no cost to them.  This is why I founded Journey to be FREE. 

You can play an important role in how future cancer stories are told.  You can make sure that you or your loved ones have the support, connections, programs, resources, and tools available, free of charge, to soften the negative impact of cancer and have a much better experience.  How?  You can do so by joining our #ABetterCancerJourney campaign, become a program sponsor or by visiting our donate page.

Thank you,

Catherine Desfosses
25-Year Cancer Survivor
Founder of Journey to be FREE