PanCare meeting in Prague, April 2018
A few days ago, I was invited by Katie, who’s a co-founder of YCE as well as a member of PanCare, to attend a meeting with them in April 2018.
PanCare is an organisation focused on improving the care child cancer patients- and survivors receive, across all of Europe. During this meeting, I’ll deliver a short speech/presentation (about fatigue/depression, surprise!) to both survivors as well as oncologists who want to improve the care provided to child cancer patients. Of course, there’s going to be several speeches by other survivors as well.
I’ll be forever grateful to the Childhood Cancer Foundation and especially Lina, a project leader at the CHCF, for sending me to Youth Cancer Europe’s 2017 summit. Without her, I wouldn’t have met Katie, or any other survivors or patient advocates for that matter. I’m of course eternally grateful to Katie for inviting me to this meeting with PanCare. Of course, the same applies to the entirety of YCE, and especially Shajjad, who’s been making a lot of headway in getting the YCE-blog started. (Note: This blog should be up soon™.)
Ever since I started blogging, and especially once I started to learn about late side effects and how common they are, I knew that this is what I want to do. I want to be a patient advocate, tell my story, and together with other survivors and advocates get the information out there, in hopes that no one else will have to go through the same thing as I did. It’s unacceptable that something so common is somehow such uncommon knowledge, even within the healthcare sector.
It’s funny, but going to this meeting to deliver a short speech is very ironic for me on many levels. First of all, I’m doing a speech about depression/fatigue after child cancer treatment. If I wouldn’t have had this latest, very, very severe depression, I never would have reached out to the CHCF, I wouldn’t have gone to Lithuania, getting to know Katie and YCE. I would have kept going, crashing time and time again. In a way, as I wrote in this post, in many ways, this depression was probably the best thing that could have happened, given the circumstances.
Another ironic thing is that I hate doing speeches. I could’ve gotten an A in Swedish but got a C because of my speeches. I even went so far as to tell my teacher that I’d like to deliver my speech in front of as few people as possible. My teachers always pointed out that I have no issues talking in the class room in general even if there’s 20 people there, and that I could get over this stage fright. I always said that I’d rather not, I wouldn’t have any use for it in the future. One teacher suggested that this could change, that maybe one day, I’d actually do speeches frequently. I always laughed and said no…
And yet, here we are! I’m convinced it’ll be easier to deliver a speech about something I care about, something I have expertise in. To me, delivering speeches in a classroom always feels so phoney. Using rhetorical tools such as thanking my audience for coming and listening to my speech is so unnatural in that setting. I also don’t care much about the subject, even if I choose it myself. Asking others to join the fight to change things is hypocritical because I’ll forget about the subject a minute later. OK, maybe I care a little bit about it, but it’s not like I’m an activist. I can’t fake this enthusiasm. However, this time, I won’t have to.
I’m very excited about this of course, and once again, I’ll be forever grateful to the CHCF and Lina, the YCE and Katie and Shajjad for enabling me to do this. To some this might sound strange, but it’s a dream come true for me. I want to be a part of changing the system, and I have been given the best opportunity possible to do so.