Author: Pamela Bou Sejean
During my recovery after my cord blood transplant (end of 2012 to now), I decided that I wanted to try and improve ethnic diversity on stem cell registries. I felt that there was a reason as to why I went through what I went through, particularly since my experience wasn't "normal" with all the crazy happenings of the extensive media coverage and meeting the President of Lebanon. I felt that maybe God had some new plans for me, I was so lucky to be alive and I wanted to use my experience to create something positive. It just felt right for me and it turned into a passion.
To begin with I wasn't sure how I was going to do this. I started by doing research to see if there was a need for it and if any other organisation was already out there increasing awareness and educating people. To my surprise I didn't find much at all. So I continued researching and contacting the Australian Bone Marrow Donor Registry for information in regards to statistics, what was involved from a donor's perspective and so on.
From there I thought that the best way to spread the word was through sharing my personal experience - so people could understand why it was important from a humane point of view rather than just the scientific facts that are often presented. So I began writing. I guess for me this was also therapeutic, it was like a diary of my entire experience from diagnosis to now. I wrote it in a way as if I was presenting it to an audience including explaining everything about the stem cell registries, how to join and what to expect if you ever had to donate your stem cells.
I also began collecting and organising photos from the past few years to begin putting them into a powerpoint presentation to do alongside my talk. This whole process of writing and collecting photos was a fairly long one, I was still very emotionally sensitive and at times it was too difficult to do, especially since I was trying to regain my physical and mental health. I would often have to stop and find something else to distract me so I didn't feel like I was always stuck in my "cancer world". My beautiful little pug dog Percy was always the best distraction, I loved to take him on walks or teach him tricks! My uncle from overseas also came for a surprise holiday during this time so we spent some good times with him too.
So the beginnings of Ur the Cure had started but hadn't quite took shape just yet, mainly due to my struggles during this "survivorship" stage. The time after treatment stops was actually very hard for me as it is for many. It's something that not many people understand. People assume that you should automatically become happy when you are cancer-free but the physical and emotional effects of having this disease can linger for a long time...