CoreCareCollective – a snippet of the story behind the initiative

Questions that patients have don’t always get answered- What can I do to keep my body in the best shape? What food is best to eat during treatment? These are a few of the many questions that require answers. In the standard 15 minute doctor visit it hard to dig deep and get these answers.

It all began with three words. “You have cancer.”
The most dreadful words anyone can hear. Denise Sliepen and Carry Hendrix heard those words.

When Denise was diagnosed with in 2015 she had support from family and friends, but still found that they couldn’t fully understand what she was going through. It was only by chance that Denise crossed paths with Carry Hendrix who was going through a similar diagnosis. An interaction at the gym brought these women to share the same space. Their friendship started and strengthened, and from that bond, it eventually led them to an idea of starting CoreCareCollective. An initiative to support the emotional and social needs of people living with cancer. This initiative promises to create a network of support dedicated to ensuring all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community.

Their story was shared in the SCimPulse Blog, and we know it’s necessary to share the “Why” behind the initiative. Their intent is to provide a tool to support a collaborative dialogue between patients for sharing experiences and offering support. As these early conversations are the backbone of any project. I had the opportunity to speak with Denise over a coffee and she shared with me the motivation behind their initiative.

A Recollection- I asked a few questions and this was the result of our conversation.

“After meeting Carry and getting to know one another and sharing the challenges and realizing they were similar including the internet for answers. We realized that information was scattered and more importantly we realized there must be others just like us. Searching for answers and support or exchange of conversation.
If something works for us, maybe it could help someone else who is in that unknown space. Sharing valuable information and treatment options are things that we would welcome. We thought we there must be others who were searching for answers as well. Nothing should be left up to chance. We decided that we wanted to help the next person who was affected and change the way people deal with cancer”.
I can recall an appointment at the hospital, where we were going to speak with a dietician for advice-which ended up not with insufficient information. We asked various questions, and shocked by the answers”.

We both loved sports, maintained a healthy diet and wanted to retain as much of our daily lives as possible prior to diagnosis while undergoing treatment. So we went online and the journey began”.

What prompted the action? “We wondered if all cancer patients struggled with the information provided on nutrition and exercise during treatment. We knew healthy eating and nutrition support can improve a patient’s quality of life during cancer treatment. But we could not find a platform to discuss these issues, exchange experiences and see what works for someone else. We all could learn from one another. So we put our thoughts together and experiences so far and decided to start a community that could benefit from each other”.

What is the mission of CoreCareCollective? “Our mission is to empower anyone who has been affected by cancer. To provide a space with the ability to connect and share personal experiences about cancer with others who understand. Our community would be 100% user-generated and engages all who are involved in a person’s cancer fight: the survivors, fighters, supporters, and caregivers”.

“Every person who faces cancer has a story. This would be a space where the individual and collective voices impacted by cancer can be heard and shared to meet the social and emotional needs of patients, families, and caregivers throughout their journey”.

I had asked who else would be in collaboration, this was her response, and “The platform will honour the individual experience and create a community of understanding that extends to the entire health care delivery system”.

Who do you want to reach? “People around the world that want to share their experiences and sharing their strength”.

Denise and Carry have the vision to improve how cancer patients receive care and to collaborate and create a cancer support community that empowers people to take control of life before, during and after treatment. This support is crucial in allowing survivors, fighters and caregivers to share experiences with foods, treatment, side effects, long term effects and more.

It is their hope that every person and family battling cancer will reach out to the many others who want to help and get connected to a community that cares. Sharing the stories each with a promising and innovative approach to reinvent healthcare.

I should end on a note with the essence of transparency, Denise and Carry, two strong and powerful women had their lives turned upside down decided to take their time and focus on feeling well and take an active role in improving their well-being. They decided to take a step back to move forward, at their own pace. So at present CoreCareCollective is waiting to be birthed. There are a plethora of platforms available to cancer patients and their families. But not all are created equally or intended to serve the same purpose. Updates on this project will be shared as they develop.

@maria this seems a duplicate of https://edgeryders.eu/t/community-conversations-with-corecarecollective/7011/2

Maybe delete it?

@alberto the first piece was an introduction, the latter is the “why, the conversations that prompted the idea and then going a bit further. It’s always of value to share an update, where they are at this moment and the reason behind the decision to put the project on hold, while at the same time express their intention to re-ignite at a later date. Whatever that time frame may be.