Please, If I could just complain, I mean explain, this whole after-treatment thing.
Ryan Hamner is a four-time survivor of Hodgkin lymphoma, a musician and a writer. In 2011, he wrote and recorded, "Where Hope Lives" for the American Cancer Society and the song for survivors, "Survivors Survive" used in 2015 for #WorldCancerDay. Currently, he operates his website for those affected by cancer, 2surviveonline.com and drinks a ridiculous amount of coffee per day.
As I sat down to write this post, I worried that I might sound like a whiner (which I can be). Then I worried that I might sound like I was making excuses (which I have done). Then I finally arrived at, “who cares what people think?” Because this is pretty much the truth for me, and I’m sure it’s probably the truth for many other survivors as well.
It’s about life after cancer. I know—it sounds cliché. There is life after cancer and that’s great. I mean, really great! I can breathe, bathe myself and even get off the toilet without help. These were once goals, believe it or not. Some of the things that come with life after cancer can be a problem for many survivors, though.
I know, it looks like I’m starting to complain here, and well, I am. But please, hear me out before you start complaining about my complaining. I’m really flattered that people look at me and think I don’t have any issues (I’m laughing). Sometimes, those with no experience with cancer (fortunately!) will make an unfortunate assumption that since a survivor is through with treatment, they’re done—all patched up and ready to go. I must look good enough on the outside to cover up the fact that I’m missing a few inches of my intestines, and that I had a million billion chemo treatments that wrecked my um, um, what’s it called? Oh, my memory. Then there’s that heart thing, the esophagus thing, the lung thing, but I’ll stop right there. I don’t want to break a HIPPA law or something like that. BTW, I think I just entered into the whining zone.
So, where am I going with all of this bellyaching? Back to the life after cancer. Yes, the life that myself, and other survivors, are blessed with. The problem is that sometimes the side effects of chemo and radiation still affect us all later. Maybe we forget birthday’s, put our wallets in the refrigerator and accidentally take your meds instead of ours. We may also want to just lie down for thirty minutes—err, make that four hours.
Sometimes the joke is always on us. We’re reminded of our spacy-ness and our superhuman ability to tap into that part of our brains where one story ends up merging with three others and then a simple, “I forgot what I was saying.” We are told, “Well, John can work out six times a week!” The assumption is: Why can’t you? The reality is that John probably doesn’t know the word petechiae. And, he probably doesn’t get his SED rate or CRP checked. The reality — and the irony — is that in order for anyone to “get” what life is like after cancer, he or she would have to wear our shoes. And, no one — especially a survivor — would ever want that! But, it would be great if the story I’m telling made enough of a connection that our spacy-ness could be understood—maybe even, respected, as the battle scar that it is.
OK, I’ll bring it down a notch. We cancer survivors aren’t whiners (maybe this one is a little). We just want people — family members, friends, coworkers — to understand that we have some issues that affect us—regularly. Many of us don’t want to mention it out of fear of coming off as someone griping, or someone who is making excuses. When you interact with us, and then you think to yourself, or say to someone else, “They’re not quite right.” You’ve just nailed it! No, we’re not quite right. That’s exactly my point.