My name is Jason, I was diagnosed with Ewing’s in June this year. The tumour was in my left knee and was only discovered during a routine operation for what we thought was a sports injury. I am now about half-way through the same protocol that you will probably be starting soon – 14 cycles of multi-agent chemo, radiation, and limb salvage surgery. The surgery is scheduled for Jan 27. I am 28, so I am fairly old for Ewing’s, though I have had symptoms for about four years. If you would like hear about the treatment and the side-effects so far, please feel free to email me at j.grant.allen@gmail.com at any time. I am online most days, except when I am in hospital. I live in Tasmania, Australia, but I have spent some time in New York and I even have some family in Huntington, Long Island.

In terms of general advice, keep your chin up and try to deal with this thing on your own terms. Look for things, however small, that you can control about your treatment and your disease, because it can feel as if your life is unravelling and racing away from you at times. Try to behave like the sort of character you would like and admire in a book about a young person dealing with cancer. You can’t control the hand you’ve been dealt, but you can control how you play it. Retain your dignity to the very end, whatever that turns out to be. Look on the bright side as often as you can, which is effortful but vastly preferable to the alternative. Keep your humour, don’t let the disease make you a person you don’t want to be. Even death is preferable to that.

All the best and like I said, feel free to write me if you feel like it.

Jason

You can add me on facebook: survivordomi@yahoo.com.

Hope everything goes well!!
Keeping you in prayer,
Domi

I’m sorry to hear about your diagnosis. I’m actually in the hospital recovering from removal of my second Synovial Sarcoma in my right leg. All the physical hardships are really about half the battle… for some people, even less. In my opinion, we have to fight harder mentally and spiritually. Finding the right combination of emotions and thoughts is a very different task for each of us…. it depends on your upbringing, religious views, friendships, family situation, life goals, age…. it can get so complicated.

But the easiest way to geel better is to feel as though you’re understood on some level, and that’s why this site is so important. Sometimes it helps just to read someone else’s post and say to yourself “Wow, that’s exactly what I felt 3 years ago!”

Cancer isn’t easy in/easy out. Once you’re in, it will linger with you forever in some way or another. How that effects you is usually something that you can decide and work on as time passes.

In my case, I was diagnosed at 15. Went through about 9 months of treatment, and left it behind me in many ways. This summer, after PASSING remission stage, a tumor grew again; the exact same thing. It’s been 8 years since I last had treatment and I am 24 now. It’s pretty mindblowing, and I know that I will be looking over my shoulder for the rest of my life….

…. but ultimately, cancer has influenced how I live, but will not determine who I will become. And that’s just something that I’ve concocted in my own head based on my own views on life. Your outlook could be different. I’m a straight-up atheist that wants to accomplish as many things as possible while I still walk this Earth. I also know what I want to do with my time here. Other people have strong ties to their faith and look for answers from a higher power. Other people don’t even know what they want to do with their life after they survive cancer…. it happens.

Moral of the story: your ultimate feelings about cancer are a part of the journey. And that aspect of the journey may never end, and could change many times over.

Good luck to you.

~Evan