This has been on my mind.......what if everything they are teaching you to care for yourself in Cancer Survivorship is all wrong in the long term? Or what folks are teaching you is OK but they are missing some of the most important long term aspects of care? I think that is how I really feel. As I travel around....and talk to other patients something is missing.....here is what I think.
1. I think every patient needs a course in assertiveness training. A business communications class. Learn how to speak to people respectfully...kindly and get what you need. In rare cancer survivorship if you do not have this skill....it could be deadly.
2. Money.......I will make a separate post about this because it is complicated however the amount of people not even having a budget continues to amaze me.
Not knowing how your health, life, disability, insurance actually works...I get it....get someone you trust to teach you.
3. Don't blindly trust everyone....if your regular oncologist tells you time and time again that you do not need a specialist...don't listen!!!! Get to a specialist in your disease....your life depends on it.
4. Every time I hear from a cancer patient hiding their disease so they do not loose their jobs, miss a promotion, just get side lined, etc ...my heart breaks. Understand your benefits etc when you are well.
5. Many Survivorship programs hire young Therapists to do big jobs in support groups and individual care. They had all the schooling and learned the basic answers to a cancer patients needs.....but they have not "been there" Thank Heavens...and they miss much although lovely people. So if you are really looking to talk and gain a working knowledge....maybe find someone with a bit of experience....someone with loads of "empathy" ....not just sympathy.
6. Create a working process for your care.....create a world that you can live in ..control what you can.....when everything else is so not in control