Victim is a word that I have never liked, though I must admit when I looked up the definition (“One who is harmed by or made to suffer from an act, circumstance, agency, or condition”), I was surprised, as it seemed palpable to me.
However, when people speak about “cancer victims,” I do get a chill in my spine. I know that people don’t mean harm by their comments, but I tell you that I have never thought of myself as a victim, and don’t much like the word.
For the longest time I thought of myself as a cancer patient, even when I was approaching the two year mark of both transplant anniversaries (the one I had in 2001 and the one in 2003). Even after being out of what I call “active treatment” that long, I still referred to myself as a patient. I can see that a significant part of that was fear on my part, fear of letting go of the hospital and the patient status where there’s such a focus on you wherever you are. There are all kinds of resources and attention at home, out in the world, and, of course, in hospital. That brings such great security, real or perceived, and there’s security in that mindset.
I have spoken on a number of occasions, in this group and others, about my fear as I approached the second anniversary of my second transplant. That mystical date when my second remission dared to be longer than my first. Six months previously, as RealTime Cancer celebrated its third birthday, I had begun a strategic renewal process with some key goals in mind: Create a strategy that would bring sustainability and independence to this organization that was almost completely associated with me.
We’ve made great strides in “removing me from the picture” at some level, and, in my opinion, we’ve gone too far in some activities, but we’re learning and it is a transitional time as I predict the next many years to be the next phase of our growth. As I was removed from our main organizational promotion, my fear of relapse grew.
Then a couple of incredible things happened, one of which was that my anniversary came and went. No leukemia. The months of 2003 were done and we were into 2004–still no leukemia. Today, I’m over three-and-half years past my second transplant, and still no leukemia.
As the days rolled by in 2004, consciously (or more likely, subconsciously), I began to open myself to the possibility that I could live to be an old man, bald, driving my motorbike all over the world with my wife, Karen. Would you believe that since my relapse, I hadn’t let myself truly buy into those thoughts and dreams? I was literally living day to day, which is a philosophy I support, but not when it is done out of fear for the future, as was the case in my situation.
As my focus slowly switched from being afraid of dying to truly living the words I leave you all with every time I write, my vision for RealTime Cancer changed.
Well, it didn’t grow as much as now I had myself smack in the middle of the growth and–even still–kicking around this organization in some capacity long after I “graduate” from our target audience of 15- to 30-years of age. My vision does still evolve as I recognize new opportunities–some good and of interest, others not so much. As we have expanded our vision, we’ve done more and more reaching out to other organizations with somewhat similar purposes–sometimes assertively, sometimes passively. We’ve learned lots about not only what we want to do, but also about what we don’t want to do.
One of the key things we’ve learned we want to do is transition from the using the word “patient” to the word “survivor.”
Let me explain. For any of you who haven’t read Lance Armstrong’s books, I highly recommend them. The Lance Armstrong Foundation (LAF) has a great view of “survivor,” and we here at RealTime Cancer have decided to endorse, adopt, incorporate it (whatever the word is), into our operations.
My interpretation of the LAF’s view is that all people are considered survivors one minute after diagnosis. So, from this day forward, RealTime Cancer will consider all patients, regardless of their phase of treatment, a survivor.
For those who have heard the news “you have cancer,” you know that those words can be among the toughest part of your challenge. As soon as I read about this adjusted version of survivor, I immediately thought, “That is cool; that makes sense.”
I personally feel strongly about encouraging others to make the transition from the patient to survivor. My whole mindset changed once I started thinking about and got comfort with the notion that I am a survivor. ‘Cause I am, and I’m going to continue to be as long as I can.
When you visit our website, you’ll now see the word survivor all over it. I thought it was important to explain our thoughts here and to ensure that people didn’t think for a second that we were all of a sudden excluding those young people who are in active treatment. No, we are here for you more than ever, and that won’t change anytime soon.
Live life. Love life.