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 AI to help Transcribe and Summarize
Creating a project or chat with your favorite AI tool will help you as a patient or caregiver better understand the conversation when it's over. AI's capable of defining terms (and spelling them correctly), summarizing action steps, researching care methods, and alternative solutions. Evaluating your lab work by trending results, and recommending conversations to have with your care team. 
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. Your diagnosis and discharge should tell you that you've got time.
If a physician says, "You need this procedure done in less than two weeks" then walks out, relax. Unless their teams help you with insurance and scheduling, focus on taking care of yourself.
Pharmacists Are Essential
Pharmacists can be, should be, will be your best friends, partners, and essential care team members.
Their experience with medications you'll rely on, their side effects and complications is extremely impressive. In our case, they've been critical to obtaining necessary dosages and approvals.
Hospital vs. Home Care
What you can be given in the hospital to stabilize your condition only exists within the hospital. They don't need pre-authorization to help you.
However, maintaining that outcome once you leave, all insurance rules apply. There's realistic chances they won't agree.
Solution: When your physician says, "We're going to do this to return you home," ask if that plan is supported by your insurance, including dosages and medicinal forms.
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.