Today, I am a disabled cancer patient and survivor, who is completely disabled due the experimental yet aggressive treatment that I endured. This aggressive treatment ended up giving me severe pain in my pelvic area, my lower back, my legs, and feet. Currently, I’m in AFO braces for the foot drop which makes it difficult for me to walk most of the time. I also have all over numbness in my legs, which is actually caused by the nerve damage that I experienced.
This life saving treatment was for cervical cancer stage 2 B, which was almost a stage 3. I was quickly diagnosed and I began chemotherapy and radiation in Dec 2002 and the treatment ended in May 2003. Unfortunately, I had to stay at the hospital as an inpatient during my chemotherapy treatments, which actually occurred every other week.
Then, I had to go every day for my radiation treatment, even when I was resting at home, but this experimental yet aggressive treatment actually saved my life. Unfortunately, I became disabled after learning that I had severe nerve damage that caused by the overall treatment. I began having extreme pain in my lower pelvis area, my lower back, my legs, and my feet. I still live with this painful condition every single day, despite my numerous failed attempts to find help for the pain which nothing really has helped. Using my college education, I tried to start my own freelance writing business and become gainfully employed.
In 2012, I built Princess Crystal Says which offers my writing services to clients and I have a personal blog that I maintain. I began writing on topics like my personal life, self care, pet care, addiction, recovery, social issues, relationship issues, and so much more.
Truthfully, I learned a lot about dealing with extreme pain and depression, which helped me to become stronger with each new day. Finally, I found myself referring to this type of strength as becoming “Dragon Strong”. During my own cancer treatment, I was so blessed to have met a lot of other female cancer patients, who I learned a lot from but I found out that no one was visiting them while they stayed in the hospital.
I felt really bad for them and I loved talking to them about my journey and their experiences. That night, I instantly began talking to my own nurses about trying to find a way to visit my new friends. I truly felt strongly about the idea that no one should ever be forced to face cancer’s touch alone.
In 2007, I built a nonprofit organization and support community that was similar to Facebook. However, in 2012, I began accepting that I could not continue to pay for the monthly fees that were caused by having a website for the organization. We also found out that the support community was charging a monthly fee. I was trying to live on my SSI and I couldn’t work due to my personal disability.
At that time, my disability check helped to pay for everything but I was unable to continue paying these extra costs with the organization. I couldn’t afford the 501 3 C that I really needed, which was $9000 dollars just to apply and then you maybe turned down. I needed the 501 3 C approved so people could potentially donate to the non profit which I had built.
We also sent out monthly greeting cards to all of our online members, who signed up to our mailing program. Honestly, I couldn’t afford the greeting cards and their monthly cost. I had to discontinue the greeting cards program which was heartbreaking for me and the people who were on our list. When we first started this program, we were actually blessed to be able to send each person a monthly card on our list.
Finally, I made a heartbreaking choice to disband the actual organization that I had built. Then, I closed the support community which was very hard and most people added me as a friend on Facebook.
Honestly, I have been thinking about creating a safe place that allows patients and survivors to get some peer support or tell their own story while visiting Facebook. I recently decided to create a new Facebook group for cancer patients and survivors to meet.
This brand new group would need to begin growing with new members who want to share their story and experience. Hopefully, in time I hope it will become a safe place to tell their personal story and to receive peer support.
Facebook Group
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Crystal Amon
Princess Crystal Says 
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