You've Got Cancer:

You've Got Cancer: 
A Guide to What We Wish We'd Known
Insights gleaned from our journey with cancer. We hope these lessons will provide clarity and guidance to others facing a similar challenge.
DL
by Daniel LeSieur
 
Navigating Diagnosis and Treatment: Lessons Learned From Our Journey
Support Network
Building a strong support network of family, friends, and support groups is essential for emotional and practical assistance.
Advocate for Yourself
Don't hesitate to ask questions, voice concerns, and actively participate in your care decisions.
Unlike medical television dramas or any other traditional business models for solving problems, collaborative discussions between physicians and teams is frequently dismissed as 'not necessary'. It's up to the patient to share the perspectives of the coordinating physicians. When you're unsure, pull  them together. Use your portals, email addresses, 
Second Opinions
Seeking second opinions from multiple specialists can offer valuable perspectives and treatment options, and be EXTREMELY confusing.
You are the only person that will help you feel more comfortable listening to physicians, nurses, and technologists. Take time to learn the terms, acronyms, and lingo. 
Using Technology
If you're comfortable using your primary care physician's portal for messaging, test results, additional care needs. Imagine attempting to utilize that portal, with two or three more. Find a trusted partner to help you build tools including basic spreadsheets to keep up with the information, appointments, questions and concerns.

We started out using spreadsheets, then built an AI agent to assist us, document conversations with summaries, etc. 

I've spent a lot of time using ChatGPT, You.com, and now Gemini Gems to help better understand the processes, expectations, terms, acronyms, and lingo. 

The Short List of things we wish we knew
Sense of Urgency, it's going to sound like you're responsible for it. You're not. There's very little you can do but call and ask. However, your diagnosis and discharge should tell you that you've got time. Otherwise, they wouldn't have discharged you. 
For instance: If a physician says, "You need this procedure done in less than two weeks". Then they'll walk out of the hospital room, and you're left feeling overwhelmed. Unless, their teams are going to help you justify the procedure with insurance providers, and schedule the procedure, you should relax and take care of yourself. 
Pharmacists can be, should be, will be your best friends, partners, and essential care team members. They're experience with the randomness of medications that you're going to be reliant on, their side effects and complications is extremely impressive. In our case, they've been critical to obtaining the necessary dosages, and approvals needed. 
What you can be given in the hospital to stabilize your condition and provide you a viable transition back to home and your primary care team only exists within the hospital. They don't have any special rules like pre-authorization to return to your best possible outcome. However, maintaining that outcome once you leave the hospital, all of those rules apply from your medical and pharmaceutical benefits providers. There's realistic chances that they won't agree. 
Solution: When your physician says, "We're going to do this, that, and the other, to return you home." Ask if that plan is supported by your insurance companies, that includes dosages, medicinal forms (pills or liquid), etc. 
These three points are based on my (Daniel LeSieur's) experience as the caregiver. 
Thriving Beyond Cancer: Practical Advice for Emotional, Mental, and Physical Well-being
Mindfulness
Practice mindfulness techniques, such as meditation and deep breathing, to manage stress and anxiety.
Physical Activity
Engage in regular physical activity, tailored to your physical abilities, to improve energy levels and overall health.
Nutrition
Focus on the diet that best fits your needs, and condition. 
Community
Connect with others who have faced similar challenges for support and shared experiences.