On May 7th, my boyfriend and I attended the Bone Cancer Research Trust Conference in Leeds. I was extremely anxious about whether it would be worth travelling for 6 hours and paying for train tickets/a hotel room because I'm pretty broke as a student. In hindsight, I've realised this anxiety was actually about whether the conference would upset me, but I didn’t want to admit it to myself. Initially, I felt like we were kind of outsiders because everyone seemed to know each other, so we sat down and kept to ourselves for the most part, excluding a few people I had met previously for the charity calendar. But this was not the point of travelling all that way, so I knew I had to start initiating conversations. I found this surprisingly difficult compared to normal, which was definitely linked to guilty feelings and high self-expectations.
This was mainly because the charity was founded by bereaved parents, and they were all present for the conference. I spoke to a few of them and felt both motivated and pressured, which then escalated into guilt. I felt motivated to start doing more for charity and continuing to use my story to help increase awareness about bone cancer, but I also felt pressured to be all-consumed by these things rather than balancing them with other aspects of my life. For a good few weeks, I could hardly think of anything but the fact that I have yet to do anything incredible with my life and that I haven’t got any solid plans to hold charitable events in the future. This was especially tough because it was a just before the end of my first year at university, and my art seemed pointless and dull compared to my cancer journey as it played over and over in my head. I knew that I would have to merge these two huge aspects of my life, but it was too late for that particular project. So it would have to be a personal summer project, not that I’ve started it yet with a move on the horizon.
So, back to the conference itself. I gained a lot of knowledge about the medical side of both Ewing’s and Osteo sarcoma, including plans for the future and how we had got to this point in research and development. And I must say, I was quite motivated by the lack of research so far. It seemed that treatment would either work or have no impact, with no pattern to indicate why. This really struck home in the Q&A time at the end of the talk, when many of the bereaved parents made their voices heard. This was another factor that made me feel embarrassed and guilty, because my body had simply reacted well, and all the times I’d been called ‘brave’ sort of flashed before my eyes. I’ve never liked that phrase. I feel that it demeans the fight of people that have not survived and I find it quite disrespectful (even though I know that people mean the best). So absorbing this information perhaps deepened my guilty feelings to a point where I felt uncomfortable talking about my journey and issues, even though I gained so much valuable knowledge.
However, I came away from the conference with a brain full of new insight into the charity that I support and I have no regrets about attending. The guilty feelings were a very negative thing to have taken away from this experience, but they were balanced by positive feelings of gratitude for my chance at life and I felt humbled by the stories that I’d heard. It’s so easy to focus on the bad thoughts about a situation, but I know that going was the right choice. I always have a somewhat ridiculous expectation to meet people around my age that’ve had the same treatment and age of diagnosis at event such as these, which obviously doesn’t happen due to the uniqueness and rarity of cancer/cancer treatment, and I therefore always come away slightly disappointed. But hopefully, this expectation will one day be met and I’ll find a kindred soul.
Overall, I found this conference educational in many ways, and I find myself more motivated to become involved in more charity work and functions from now on, including this blog! Also I hope everyone (if anyone?) that reads my blog is doing well!
Sophie xo
