Words of Wisdom?
Journey. Battle. Fight. Warrior. War. Purpose. Survivor. Test. Beast, which is my personal favorite. The list of words used to describe our cancer experience is endless. I’m ok with all of them. Whichever works for the individual is fine with me. I understand that there are folks who dislike the warrior, battle or fight metaphor. I get it. Soon after I was diagnosed, a friend sent me a bracelet that said “F#&@ Cancer” (I think we all know what I am referring to). At the time, I didn’t want to wear it or even use the phrase. I felt like if I said it, I was giving too much power to my cancer. Now, 7 years later, I’m actually ok with it, because honestly: F#&@ cancer.
Words of encouragement
I’ve heard a lot of words of encouragement or suggestions over the years. Many go in one ear and out the other. It’s a team effort. Don’t be angry. My neighbor had some kind of cancer last year and now they’re fine. Make sure your will is in place. You don’t look sick. I know a doctor 5,000 miles away, they’re the best and you should go see her. Drinking a lot of water will cure you. Stay positive. I know people mean well, but for me the best words I heard were simply words of support, such as: I’m here if you need me or (really simple) hang in there.
And then there are the words that I’ve heard that sound wonderful…theoretically. Embrace each day. Live life to the fullest. Each day is a gift. You can do whatever you please. This is the time to be selfish. See the world. These haven’t always been doable given my physical or emotional state or because of finances or because my real-world responsibilities haven’t gone away just because I have cancer.
Finding my new normal
For me, the big one is: new normal. I think we all talk about it. With any serious health crisis, life as we know it will never be the same after a diagnosis. And even if we recover physically 100%, our perspective has permanently been altered. When I was first diagnosed, it was important to me to continue to work. Obviously, a paycheck and maintaining insurance was a huge driver, but I also wanted normalcy. I wanted to not think about cancer. I wanted to joke around with my co-workers at the water cooler. After a while though, I started to get frustrated with normalcy. It seemed so boring. I’d had a truly life changing event and there I was sitting at the same desk I had before I was sick.
My primary oncologist always talks about trends and cruise control. He’s very practical and doesn’t want me getting worried by individual lab results and tells me to follow the trends. Myeloma is incurable so his goal from the beginning was to get me to where I’m on cruise control, meaning I uneventfully come to his office, see his nurses, do my infusion, manage my disease and it’s all part of my regular routine. This is also part of the new normal.
Matt Version 2.0
A year ago I decided to stop working and instead focus on my health as well as work on those sentiments that I mentioned above that all sound wonderful. I had relapsed, started a new treatment regimen in late 2016, and was feeling as good as I’ve felt since being diagnosed and it seemed like the right time to push the concept of new normal. Occasionally I refer to this as Matt Version 2.0. And to let you in on a little secret, I do this to basically trick myself into staying positive and embracing each day and to always be a beast.
Every so often I’ll see a story about what to say or not to say to a loved one or friend or family with cancer. I used to get bothered when someone said something to me that seemed like not the right thing to say. The nerve of them! But over time, I stopped being bothered. It’s a tricky topic.
In summary, you should describe your cancer experience any way you want to…good or bad. Use your words.
How long did it take to be properly diagnosed?