I have posted a few times on here before and love the support I find every time I stop by.
I just have been needing to connect with some of you and get off my chest that I have been feeling so misunderstood in my life. I was diagnosed three and a half years ago and having a good response on Gleevec. It seems that as more time passes the more people around me forget that I am living with cancer. Friends, acquaintances, church members, even some family members don't register the fact that this is still the same burden on my life as it was three years ago. I still have to sleep 12 hours a night, I still have diarrhea daily, and brain fog, etc. etc. I think the thing is that I have made a decision in my life to crawl out of bed each day and try and smile and keep living life and doing normal things and it makes it easy for people to forget the reality of things. I put on my best game face everyday and now it is leading to me feeling a little misunderstood and alone.
I also am struggling with all the different "compartments" of my life with cancer. There is the medical part. There is the spiritual and emotional parts. And there is the physical part. I have not found a way to have all these areas addressed together. You know, my doctor of course understands the medical part and tries to understand the physical part, but lacks in understanding the spiritual part...My priest tries to understand the spiritual and emotional aspects, but cannot being to fathom the physical and medical part...My husband comes close in all the areas to understanding the best, yet - unless you have cancer, you will never fully get the full depth to it all (the good and the bad).
I have never been to a cancer support group. Do any of you go? Why do I have a need for people around me to understand that I am dealing with cancer? Is it because my CML is pretty invisible to the outside world at this point in my journey...
I don't know...I feel like the only people who really "get" me are other people with incurable cancers.
Thanks for listening!