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Seeing Cancer Survivorship through the Lens of Our Patient Advisors

By Kim King

National Cancer Survivor Month is about more than awareness. It’s a celebration for those who have survived and an inspiration for those recently diagnosed. At Blue Note Therapeutics, we understand that every survivorship experience is unique. Our patient advisors work closely with us to support our mission. As we celebrate them, we are also honored to be part of their cancer journeys and to share what terms like “survivor” mean in their own words.

Seeing Cancer Survivorship through the Lens of Our Patient Advisors

Does the term survivor resonate with you, why or why not? 

“’Survivor' does not resonate for me because it implies looking back at a disease that has been cured or conquered. I have a slow growing cancer, and it’s likely that it will recur. I consider myself still a patient.” – Brad 


“The term ‘survivor’ resonates with me because I faced a traumatic experience and I have come out on the other side, against all odds.” – Grace 


“The word survivor is such an ‘individual’ description. For some it’s going through the battle of managing a cancer diagnosis, for others it’s associated with the trauma if and when you have completed treatment. For me, ‘survivor’ means the risk I took walking away from my original medical team. Following my own treatment path with a wonderful mixture of faith, science and advocacy allowed me to live and survive when the odds were stacked really high against me.” – Karen 


What does being a survivor mean to you? 


“It means that I have not been defeated by my cancer. I keep going no matter what challenges land in my path.” – Sarah 


“I survived the onslaught of Inflammatory Breast Cancer (IBC). IBC is an under-represented cancer type that spreads rapidly and can kill a person within a year. Henceforth, I now live with metastatic cancer. I survived 8 rounds of chemotherapy. I survived the painful side effects of chemotherapy. I am surviving through targeted chemotherapy every 21 days and its side effects. I am surviving through chronic bone pain and the pain of neuropathy. I am honored I am surviving and being with my family.” – Betty


“It’s like being reborn again. My doctor after my transplant celebrated my second birthday.” – Lewis 


“It means I get to watch my daughter grow up and that I get the privilege of being her Daddy.” –Brian


“It means acknowledging there is a problem, accepting it, facing it squarely, and being resilient enough to overcome it. In most cases, while hanging on by a thread.” – Grace


“Means that ultimately the disease will not take you. Nevertheless, I thrive every day to live with this nasty disease knowing that one day it will take me.” – Natalia


How has surviving cancer shifted your perspective on your life ahead? 


“I do not take time for granted. I try to fit as much life into my days as possible. I don’t have time to let fear rob me of experiences I might have. I prioritize being with my family and friends as much as possible.” – Sarah


“I appreciate every day of my life. It is like a gift to look forward to.” – Lewis


“It’s made me appreciate every day, knowing that I could have been in trouble. Also makes me want to help others experiencing the same journey.” – Mark


“I am more conscious of fulfillment (e.g., finding joy and beauty in small things) in life and less about material success.” – Brian


“As a survivor, I realized that there are no hard or fast rules on how to deal with cancer or any other challenge as life constantly throws us curveballs. It takes a combination of faith, strength, determination, and most importantly, a good support system to move ahead. I make constant affirmations that there will be light at the end of the tunnel, and I believe it to be so. It is not always a smile and not necessarily a frown either as the experience has changed me in no small measure, but albeit very positively.” – Grace


“I choose life in every decision I make.  My peace is non-negotiable. I walk in blessings every day and I am on a mission to eradicate Black Breast Cancer.” – Ricki 


“I’m stage IV and chemo for life, and the fact that I’m still alive almost 4 years since my diagnosis is a miracle.  For now, I live scan to scan, which is about every 3 months.  Prior to cancer, I was always planning and saving for retirement and thinking well down the road about my future.  Now, I have to hope that I can continue to beat the odds and be here for a long time, but I have to be realistic as well. So, now I mostly plan things 3 months at a time.” – Michael 


What is your definition of surviving? 


“I’m still here.” – Brad


“Rebirth.” – Lewis


“Living another day to the best of my ability.” – Brian


“For me, surviving cancer is a lot like being a boxer in a title fight. I’ll win some rounds. I’ll lose some rounds. But no matter what, when the bell rings, I come out of my corner ready to fight.”   – Michael


“Do what you want, on your own terms! Period. That’s surviving.” – Karen


Any advice to share with those being diagnosed now or with those surviving? 


“Learn as much as you can, find time and have interest in your disease, and become proactive in advocating for your best treatment options.” – Brad


“Never ever give up! Stay strong because being positive is one of the keys to survival.” – Lewis


“Community is really important. Being able to connect, be held accountable, be helped and to give help is super important.” – Mark


“Without mental health there is no health. Your mind will take you only as far as you will allow it. Where the mind goes, the body follows. Challenge yourself as best as you can. Know that mental resilience is not a muscle, you must work on it like you would work your abdominal muscles. In addition, fear and gratitude cannot dwell in the same place. Just like light and darkness. I always choose Gratitude. I always choose Light. My final advice is that patients who are actively involved in their healthcare trajectory do have better outcomes. I was, and so should you.” – Grace


“To those being diagnosed now - I’m so sorry you are going through this.  Make sure you are your biggest advocate in your care.  Don’t be afraid to ask questions and speak up. To those surviving, stay strong in the fight!!” – Michael


“Take one day at a time and please educate yourself about your disease. Two patients can have exactly the same type and subtype of breast cancer and still respond completely different to the same treatment. Knowledge is power and knowing about your unique situation can help you to make informed decisions on your own treatment.” – Natalia


“When you’re in a dark place, be kind to yourself. You are deserving, you are special, your voice matters. Seek out calm spaces and gravitate towards mental health support.” – Karen


What gives you hope for the future? 


“Truly amazing medical advances are happening every day. I am hopeful that my two types of cancer will one day be curable and preventable.” – Sarah


“The abundance of new therapeutics in the pipelines.” – Betty


“Science about Black Breast Cancer and encouraging Black women to participate in research.” – Ricki 


“Hope is that cancer research continues to evolve and save patients.  Patients of color continue to fight for equity, inclusion and diversity when it comes to access, education and treatment in the cancer ecosystem.” – Karen 


Each of our patient advisors is navigating their own unique experiences. Through their stories, we hope to shed a light on the many sides of “survivorship.” The cancer journey does not end after a cancer-free screening. At Blue Note Therapeutics, we recognize the many emotions felt after facing cancer, including anxiety and depression. That’s why it is our mission to develop new prescription digital therapeutics for cancer-related distress to improve patient care at every step of a person’s journey.