Peter: “I was surprised by how bad cancer kicks your ass. I was a big strong guy and it kicked my ass.”
One day, a good friend of mine called me to say that a friend had been diagnosed with testicular cancer. Since I had survived this, he asked if I’d be willing to give the guy some pointers, to which I totally agreed. A few days later, my friend’s friend called and asked me to pull no punches. So I gave him an accurate idea of what to expect, and then I said, “Be prepared. This is going to hit you like a truck. You can either brace for the impact or get run over.”
He told me that he worked out, he was an athlete, and that he could take anything thrown at him. He and I agreed to talk in the future, and when I hung up with him, I looked at my wife Stephanie and said, “He has no idea what’s coming.”
There are so many things that surprised me about cancer, both physically and psychologically. It’s one reason why this was the question that intrigued me the most during our Five Minute Blog at CancerCon…the world’s largest gathering of young adult cancer patients, survivors, caregivers, and advocates. During the three-day event put on by the amazing folks at Stupid Cancer, we had sixty-four people sit with us to answer five questions about their experience. This was question 4:
What is the one thing that surprised you the most during cancer?
Julie: “I’m actually surprised at how many people are affected and how many types there are. This a universal thing.”
Joy: “It was totally unexpected; it came completely out of the blue. I had no family history of breast cancer.”
Hailey: “That I could be diagnosed with the same cancer as my mom six weeks after she was. That was pretty crazy.”
Sophie: “It can change you so completely, and instantly.”
Jessica: “I thought just ploughing through treatment at eighteen would have been easier. It wasn’t.”
Some people were surprised by the effects that didn’t happen for them.
Emily: “Chemo was not quite as brutal as I thought it would be. They told me it would crush me, but I got lucky.”
Kalina: “I was surprised that not everyone loses their hair.”
Others were surprised by just how far the side effects went.
Karissa: “I’ve never been told by anyone what it’s like to be on chemo. So I was surprised I felt like a garbage truck.”
Juliana: “Eyelash loss was hard.”
I wasn’t quite prepared for that one either. It reminded me of the movie,Powder. “He is electrolysis.”
Brittany: “How absurd it is to be bald and in college and dating. Although, you can get away with making the worst jokes ever.”
Christopher: “The whole topic of ‘couth’ goes from things being off limits to completely normal in a very short period of time.”
Have I ever told you the story of the time it took two orderlies and a truckload of lube to insert a catheter? Yes? No?
Casey: “There isn’t a stigma around having cancer. You can shout it out to the world, which is different from other diseases.”
I suppose it wouldn’t seem quite as tribal to yell, “My gout is in remission! Woo hoo!”
Or, “I’ve got the clap!” *clap* “I’ve got the clap!” *clap*
Yet it’s not just during treatment when things go south and stay there for a spell. Long-term effects are much longer term than we ever initially realize.
Allison: “Now I’m post menopausal; I have hot flashes, and my insides don’t work well.”
Sarah: “There are long term effects that aren’t physical. Mental health issues are rarely talked about.”
Rachel: “I thought it would end at some point. In reality, it never ends.”
Melissa: “Finishing treatment is not the end of cancer…merely the end of when people care about your cancer.”
I have to say that it felt like a punch in the ball when Melissa said this. This one also stung:
Chad: “The people who I thought would be there were some of the first to disappear.”
At some point, it happens to all of us…though sometimes, hindsight might offer a little perspective.
Johanna: “That’s not to say those people who walked away are bad; they just didn’t have the skills to cope.”
And quite often, there is a larger influx than exodus.
Lori: “I’ve met some amazing people as a result of cancer.”
Liz: “…people I would never have met. I love these people. It amazes me.”
Angie: “Even when you feel alone, you’re really not alone.”
Yet this, too, is a double edged sword. On one hand, you are not alone. On the other hand…
Jennifer: “The number of young people who have been given a cancer diagnosis blows me away.”
Niki: “It’s not six degrees of separation anymore. It’s one degree. We’re all going to be affected.”
Betsy: “It still affects me ten years later in various ways. I still get very upset going to doctors appointments.”
I’m not going to lie: I still get nervous, too. And if ever something feels off with righty, I automatically suffer a small bout of PTSD. Once, I asked Stupid Cancer founder Matthew Zachary, himself a survivor of a brain tumor, if he ever had a thought of relapse whenever he got a headache.
Matthew: “Every time.”
With that being said, a thing that has surprised a lot of people, myself included, is how much more treatable cancer is today, even if it comes back after being vanquished prior.
Vera: “In my relapse, treatment was much more aggressive. And I still didn’t die. It’s a little less scary than it’s generally painted to be.”
Alyssa: “I had Hodgkin’s-Lymphoma, which is like hitting the cancer lottery.”
It’s just the fact that we’re saying things like “the cancer lottery” that still stuns me. My own oncologist, Burt Needles, told me that when I was diagnosed with testicular, “We’ve hit a homerun!”
It felt more like getting hit in the stomach a with Louisville Slugger, but I understood his point.
Asia: “My hair started growing back I gained weight. The media portrays cancer in a very one sided view I wish they didn’t do that.”
Diane: “I was surprised that I didn’t die overnight. In the movies people die within a two-hour timeframe. Physicality of the surgery was not like in the movies.”
Todd: “Life kinda came back to normal. I survived. My life came back.”
Kelly: “I didn’t have to put my life on hold. Still graduated on time. School accommodated me.”
Holly: “It made me strong. Before Cancer, I had excuses. I couldn’t be a runner because of my asthma. Nothing can stop me now. I ran a half-marathon. With my inhaler.”
I couldn’t perform a half-marathon on a Segway, let alone run it. Yet it’s people like Holly that teach us maybe the most universal lesson of all: cancer is not a death sentence. In many ways, it’s a rebirth.
Eden: “Even though it nearly killed me, it saved my life. When I realized I was dying, it opened my eyes to see that I wasn’t really living.”
Sierra: “My perspective on life shifted tremendously for the better.”
Kaitlyn: “Happiness can come out of something terrible.”
Jen: “It lead me on a path that I would never have anticipated.”
Emily: “Even though it completely sucks, it was reaffirming to me with what I want to do in my life, and how I can use my talents to help others.”
Alejandra: “It made my heart bigger, more sentimental, and I really started to notice the little things, because I didn’t know if it would be the last time.”
Vanessa: “And it’s like the rose tinted glasses are off. You realize how precious time is.”
Philomina: “Like Christopher Robin once said, ‘You are braver than you believe.’”
Susan: “It surprised me to find out who I really was. I’m way more of a badass than I thought.
Could not have said it better.