Advice from cancer patients, like you!

Positive self talk………every time fear enters the mind. Not easy I know , but it certainly helped me.

Thats good advice, also drink lots of water thruout your treatment.

During the diagnostic period, I set up my "committee" for support. This was my husband, my grown daughter, and my best friend. They made sure someone went with me to all appointments, did some research, and met regularly with me. Most importantly, they worked with me to make decisions. If I was in a gray zone myself, I'd simply do what they suggested. They are very different kinds of people but they all supported me. Also, this helped my husband a lot as he didn't have to do everything. People would ask "what can I do?" I didn't want or need meals! So I set up a bunch of other committees, kind of light-heartedly. I had a "suggest good distracting books to read" one and I asked a friend who is a therapist to be the only member of the "Please tell me if I am acting super irrationally committee." It was a fun way to connect to people, included them, and helped.

You mentioned a journal. I started a journal to keep a list of appointments, any prescribed medications, questions to ask, and sometimes just to write down thoughts. When I look back now, I can see I used the journal to vent and express my emotions.

Even though most providers provide visit information via electronic medical records. My notes in journals were more personal.

My husband had lung cancer. I kept track of all his activity, his blood pressure, blood sugar, temperature, reactions to different medicines and treatments, bowel movements etc. From all of that information I typed up a narrative for each doctor appointment he had. That way, the doctor had a complete picture of my husband's progression and current physical abilities at each point in his illness. With that information the doctor could act more accordingly and get my husband the actual care he needed or didn't need at the moment. The doctors really appreciated these narratives and often said so. Also it was an easy way to remember everything you wanted to bring up to the doctor.
PML

Knowledge is power! On my first go 'round with cancer, I researched things and learned how to navigate my case. The next time, with various forms of skin cancer [that still continue today], I learned what to be aware of and advocate for myself. With the diagnosis of multiple myeloma, it became a quest of coordinating treatment protocols with end stage renal disease, and what would work best.

Staying present, considering the different protocols, staying positive, reaching out for support as needed, have all helped me. Writing down my emotions, addressing the very real mental and emotional burdens of cancer have assisted in making this as healthy a journey as possible
Ginger

@pml yes, that’s excellent advice….i did something similar and shared it with the women who accompanied me to appointments, to see if they had questions to add …the NP scanned my info/question sheets to make them part of the medical record. It also helped me as I tried to understand what was going on.

Three things:
1. Don’t google for information
2. Don’t believe images of chemo patients as sick as a dog. Treatments have advanced
3. Keep moving. Walk every day

As a stage 3s NHL, really stage 4, survivor. I was constantly told that (once I escaped into the real world) that I was too happy and I did not respect my condition by some members of my care team. In other words I was denying the seriousness of my illness. Ha, I had them fooled, and I am still here! I looked at everyday as a hard won gift and was very grateful, and did everything to make sure there was a tomorrow. I just enjoyed that I was alive!

JFN

@jfn how can a survivor be too happy ? Hello ! We are among the most grateful people around ! We welcome each day as a precious gift.