Speak Up, Rise Up: Empowering Cancer Patients/Survivors and their Caregivers
- Jun 16
- 4 min read
By Mollie Kallen, MS, CRC, CCM
Cancer touches everyone. If it has not touched you personally (which is something to be incredibly grateful for) then odds are it has touched someone you care about or know.
Here’s the Bad News: Based on statistics released from The American Cancer Society in April of 2024, an estimated 20 million cancer cases were newly diagnosed worldwide in 2024. Projections are predicted to reach 35 million by 2050 representing a 77% increase from 2022 figures. About 1 in 5 people worldwide develop cancer in their lifetime with approximately 1 in 12 women dying from the disease.
BUT here is the good news: In 2022 an estimated 53.5 million people worldwide were alive within 5 years following a cancer. Survival rates have increased significantly, rising from 49% in mid-1970’s to 68% currently with over 72% survival rates for at least five years. This can be attributed to several factors: Better treatments (newer and different treatment approaches and trials), earlier detections, and decline in smoking rates.
Given the above, I want to discuss a sometimes taboo subject: the importance of empowerment and advocacy to those going through a cancer journey or to all of those who are touched by them. I have worked for over thirty years and continue to work as a case manager advocating for injured workers. My wheelhouse has been trying my best to be a mentor, influencer and thought leader for others and to focus on leaving a legacy for those following behind us my industry.
I never thought that I’d have to put my professional skill set to use in my personal life to such a degree. I have always helped others (friends and family) advocating for their own health issues, but I was faced with becoming my own advocate when I was diagnosed with AML (Acute Myeloid Leukemia) in Spring of 2023. Needless to say that it is a whole different concept when it is YOU that is faced with a health crisis and as I went through my journey ( with the incredible support of my medical team, my employer, and my village of friends and family) it became too clear to me that so many others do not have the voice, training, experience and knowledge base to advocate for themselves and their loved ones.
Everyone has a different road and journey to face, but I was so surprised that there was not any type of handbook out there for those facing a horrific diagnosis AND for those who are caring for them. There are many memoirs out there and while many of them are very moving and inspiring, there was, much to my surprise, NOTHING that was a more practical guide for patients and caregivers of how to navigate their journey in a practical/common sense way. Because of my profession, I was quickly able to mobilize people in the medical field to give my guidance and understanding. BUT where do others turn to for advice who do not have this in their wheelhouse. Who can help them with how to prepare for long hospital stays, how to assemble your medical team, how to disseminate information to your friends/family, how to get second opinions, etc.? There was NOTHING out there.
I was shocked while inpatient, when I would tell other patients about the things I did to advocate for my own health (physically, emotionally, financially, etc.) and others would look at me with a blank stare and ask “You can do that?” Even simply asking a charge nurse to have another nurse come into your room instead of another is a simple way to empower yourself on your journey. It is SO difficult as not only are you at an extremely vulnerable and physically weak time, but you often feel so isolated and depressed. It is indeed a heavy load.
So, I decided to write a book, whose working title is “It’s not About Me…. A Practical Guide to Dealing with Cancer”.
I envision it as a type of a workbook/guidebook that is tabbed for different sections and can be given to patients and caregivers upon diagnosis/start of treatment. I am also speaking out on many platforms about the importance of self-advocacy, self-education and access to resources as well as coaching and mentoring others.
As a woman, it is often very difficult to make our voices heard and to rise above the noise of predisposed ideas and biases. Women are also traditionally the ones who are in the role of caretakers, and it is so difficult when you are in the position of asking for help and having to rely on others when this is usually your domain. I personally had to learn this lesson and so many others; patience, gratitude, empathy are my top three. There is no art to being an “unstoppable woman”; everyone has their own, unique journey with often many bumps in the road. But I am so hopeful that given all our advances in medicine and in communication, that men and women, patients and survivors and caregivers will feel less alone, more connected to others and resources and mentors to ease their journey and provide improved outcomes for everyone.
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