My surgery was in August 2024, and I had 25 days of radiation from Sept to October. Hospitalization was rough; I recovered well from the surgery and had minimal side effects from the radiation. My Chemo is an oral medication that I take daily for possibly 2 years, 5 years or the rest of my life. In the meantime, I retired from work, so I am adjusting to a different retirement scenario than I had planned. The Chemo has been titrated to my tolerance, and some days, the side effects are still overwhelming. GI side effects, fatigue, brain fog. I have to plan my days not to overdo things energy-wise. I am trying to build relationships with other women to meet for coffee or lunch. I have hobbies that I am ramping up. I also have put a lot of time into getting onto long-term disability from my former employer and setting up Medicare Health Insurance.
I have worked a remote job for the last 11 years, so I have no local former coworkers with whom I can stay in touch. My spouse continues to work and will not likely retire for 4-5 years. I have local kids and their spouses and grandchildren. I hope to get a part-time job to bring in some cash and an outlet to use my nursing skills and interact with people. I see a therapist every 2-3 weeks, and emotionally am on a roller coaster. I use music and videos for emotional support. My spouse is supportive, but he can't be my only support. I see my oncologist monthly with labs and the endocrine dept every 3 months. CT scans every 3 months. One of my biggest emotional struggles is how rare this cancer is and how little recent research there is on it. (1990s) The Chemo treatment is from the 1960s. I feel like a unicorn; even my oncologist rarely sees this cancer. The 5-year survival rates are 60%, but reoccurrence rates are high, so close surveillance is needed. Has anyone survived longer? How long have you been on Mitotane? I just feel so isolated.