One of the many challenges when facing cancer is how to move beyond being strictly reactive to being proactive.
As we have discussed, when dealing with your doctor, oncologist, nursing staff, and social workers (all part of your core cancer team), the entire process and system feels very reactive - reacting to side effects when they arise, new pains, evolving symptoms, changing drugs and new medicines, and chasing information from your medical team. All of this takes time while leaving you with feelings of frustration and isolation.
But @CancerQ, we have identified one of the biggest challenges that prohibits people, families, and patients from moving beyond being strictly reactive to becoming proactive.
It's what we call the "information barrier." The information barrier is when resources (papers from your doctor, tips from your hospital's nutritionist, reports from your medical institution) just don't quite go as far as you would like them to. They may be good tips that just aren't useful or practical - beyond merely words on a page.
Let me give an example. When our mom was sick, due to her cancer and the aggressiveness of chemotherapy treatments, she had a difficult time drinking water. It tasted metallic and she had a hard time consuming enough. Every time we would see her oncology center nutritionist she would ask, "Are you drinking 2-3 glasses of water a day?" And each time our answer would remain the same, "No, we are having a hard time getting the water down due to the taste and challenges from the chemo treatments." The nutritionist would again recommend drinking more water, but not provide tangible, proactive, or useful tips. So we were forced to turn elsewhere. Perhaps you have experienced similar?
It was in research, books, and online readings that we found adding lemon juice to water could help reduce the metallic taste after chemo treatments. And it worked.
The above is an example where the information being provided just didn't quite go far enough - it wasn't applicable to a specific patient or a patient's ever-changing needs. And unfortunately, this is only one of many examples.
However, we are building resources and tools that help you cross the information barrier, to move from reactive to proactive. Here's a diagram, our CQ Roadmap, to illustrate the concept:
CancerQ, by providing you the credible resources that have proven helpful to others, will play a vital role in the "useful" section of the roadmap. By connecting to useful resources, we feel you can make a huge leap from being reactive to becoming proactive in your care, treatment, and preparedness.
Medical institutions do an amazing job connecting you to resources when you are within their physical walls via appointments, specialists, and meeting with your core care team. The challenge is the second you walk out the door. Where do you turn, where do you go for the right reliable information?
We hope here, with us.
What you can do right now:
1) Explore our Wheel for 40+ resources / tools / readings on 8 cancer related topics.
2) Send us any resource that has proven extremely helpful for you. Submit them here.
3) Apply to be one of our CancerQ Ambassadors and assist others in their journey with cancer.
4) Ask your doctor for outside recommendations. Do they have NGO's, organizations, or other providers of cancer information that they recommend. For example, if you have breast cancer, ask them about Susan G Komen and how they recommend you utilize the resources SGK provides.
- Zach Weismann
too long (TL) ; Didn't Read (DR)
Cancer resources (nutritional guides, medicine information, exercise plans, etc.) given and provided to you by your medical institution or doctor aren't always useful enough. CancerQ will help connect you to helpful and actionable resources from our community and leading institutions. This will empower you and your family to become more proactive and less reactive to the disease.