Cancer patients and cancer survivors might never stop asking ‘why me?’ Last week I dived into The Big Why Me. Here is what I found.

I just got back from four days in Atlanta where I participated in the 2nd AYA Global Cancer Congress. It was quite interesting spending several days talking about nothing but the very same cancer that I have been trying to avoid ever since the day I got the diagnosis myself. But so much has changed. I am not afraid of the cancer. Actually, I wanted to dive into the field and understand more about my past, because even though the distance between me and the cancer is getting a little bit bigger every single day, luckily, it is also a big part of who I am today. I must understand it. Or at least try. And it was actually funny in Atlanta; during these four days at the AYA Global Cancer Congress I talked to more oncologists than I did when I was a patient. Or maybe I was just more awake and present during these Atlanta talks than I was when I had the chemo running in my veins.

The 2nd Aya Global Cancer Congress was a big happening. Almost 400 delegates from 23 countries were gathered to talk about one thing: How can we improve the lives of adolescent and young adult cancer patients? Not only improve survival statistics but also improve the quality of life for those who are lucky enough to survive. Like me.

Atlanta Learnings

So, what did I actually learn at The 2nd Aya Global Cancer Congress?

  • I am not the only survivor. (Of course, I knew that, but there’s a difference between knowing theoretically that someone else went through kind of the same as you and got out on the other side, and actually standing in front of them, talking to them and seeing that look in their eyes as if you don’t have to say anything at all – they will understand you anyway.) We were several survivors at the congress. And boy, are we lucky!
  • Statistically the survival rates for ‘AYA’s (15-39 years old) are very poor, even though they have improved. But compared to children and adults with cancer not many of us AYAs survive.
  • And if we survive we tend to have pretty bad lives afterwards. Statistically speaking.

And why is all that?

 

The Big Why Me 1

I’m not a doctor, but many at the congress were. They presented years of research (many of them quite affected by the fact that they had only a few slides to present several years of their research). As I understood it, the big why has something to do with the fact that children and adults typically get cancer types that doesn’t vary as much as adolescents and young adults. As I said, I’m not a doctor. Maybe I got things wrong. But as I understood the experts, AYA’s cancer vary over a bigger number of different cancer types, some of them quite rare and difficult to diagnose. Like mine. Ewing’s Sarcoma.

 

The Big Why Me 2

Being an ‘AYA’ cancer patient is quite complex. If you are in that stage of life where your entire body is changing, how is it then possible to discover the signs of cancer? How do you see the difference between your body changing in a normal teenage way and changes because of an early stage of cancer? And if you are like any other teenager you might think of your body is a big taboo. So, who do you talk to about signs of something unusual? Your mom? No. You doctor? I don’t think so.

The consequences are often a late diagnosis. Which makes you last in the running towards becoming a survivor.

 

The AYA Cancer Paradox

Being just a normal teenager is complex and confusing. You are so busy with yourself, looking for your own identity and desperately trying to find some kind of coolness factor that will make your social survival. (Remember how it felt when you were 16?). Now, add cancer to this and you have created a universe almost impossible to navigate in. Not only will you have to deal with existential questions like ‘who am I?’ Suddenly, you also have to deal with the even bigger question: ‘Am I?’

That’s one of the major themes in my book “Willpower Girl – A Teenager’s Trek Through Cancer”. And one might call it The AYA Cancer Paradox. I will dive into this in my next blogs in the following weeks. If you can’t wait, get a free sample chapter here. Or get a copy of the book here, it’s available as paperback AND kindle version.

 

Gratitude

I have returned from the AYA Global Cancer Congress 2017 full of gratitude. Almost 400 passionate professionals (oncologists, nurses, social workers, advocates, researchers, scientists and others) had taken time out of their busy schedule and dedicated it to us; AYA cancer patients and AYA cancer survivors, to try to find solutions that will improve the survival statistics and the quality of our lives after cancer. Atlanta taught me that surviving cancer and being a survivor are two very different things. Unfortunately, lots of the ‘AYA’s continue to look at their life after cancer as something they shall survive – instead of living their lives. There is a big difference. And I am looking forward to dive into that dilemma in my following blogs.

Right now, I just want to say a big THANKS to all of you who were in Atlanta. Because of you, I am here today. Thank you <3

I hope you will continue the fight for us ‘AYA’s, and I am honored to send a soldier to the battle field. May my book bring inspiration and hope to patients, families, friends, oncologists, nurses, social workers, scientists, researchers and many more all over the world.