Living with cancer: the new normal

Living with cancer: the new normal

Our bodies and our physical being are a very important part of who we are, or who we think we are. Is that obvious? I don’t really think so, at least not to healthy people. Surgery, chronic illness, injuries, cancer toss all sorts of obstacles in our paths. One of the biggest obstacles for me has been inhabiting a new identity that has been thrust upon me, shrugging into the new normal and giving up mourning the old me.

Part of what I mourn is purely physical. For those of us with bladder cancer, peeing is a whole new experience after diagnosis. Dozens of folks in my online support group have remarked about this, and I felt such relief when I read their comments. You can’t strike up a conversation about peeing with just anyone.

Many of us, I’d guess the majority, were diagnosed because of blood in our urine. For me, it was copious amounts. So, almost all of us have little anxiety attacks every time we pee, checking to make sure we don’t see blood.

The impact of treatments is bigger. It has taken a year and half for me to go more than 30 minutes without a visit to the bathroom. Being in downtown Chicago is my favorite distraction and a great joy, a place I try to be as often as possible. The Metra ride from my town into downtown is about 45 minutes, and I’ve barely been able to manage the trip.

Meetings usually last an hour where I work. My classes last an hour and 15 minutes. Movies go two hours. You’re supposed to sleep for seven or eight hours. This is small stuff that you learn to manage. Still, I don’t feel like myself, the old self anyway.

And I know that I’m very lucky. Many of those in my support group have lost their bladders and several other body parts. Some have artificial bladders, others have various type of diversions. They don’t sleep the same and they don’t travel the same. They may not be able to have sex.

I know several people who’ve had major changes in their lives because of surgeries and illness. People who used to have large breasts who now have none at all. People who have lost large portions of their colon and will never eat or digest food the same way again.

People who are hit by waves of exhaustion so powerful that they can only sleep. People whose joints are so stiff that they can barely walk. People who are unable to swallow water without great concentration or, perhaps, not at all.

An acquaintance once said, “Well, none of that matters. You’re alive.”

Actually, all of it matters. All of it compiled is who we are. I’d like to think of myself as a low maintenance person, but every outing I go on is driven by knowing where the nearest bathrooms are. I feel neurotic and disruptive.

You develop a sort of vigilance and wariness about your new self, anxiety about this new way of being. You desperately miss the comfort of being nonchalant. You miss being normal.

For people with dramatic changes in their lives, the new normal can be a much smaller place, a slower place, a dependent place. People who could backpack for days with 40 pounds of gear on their backs or who could carry a baby in one arm and groceries in another now need help going up stairs

Living in the new normal is definitely better than not living. For some people the new normal is a huge improvement from the past. But it’s an adjustment for everyone and it affects how we think about ourselves.

I’ve always hated the Nietzche quotation, “That which does not kill us makes us stronger.” It dismisses the reality of suffering and struggling that is very much a part of being human. It misses the challenge of learning to embrace who you are when you have less physical stamina or fewer original body parts or chronic pain.

The new normal is a strange place for many of us. As long as it is “new,” it’s probably not very normal.

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