It’s more than a year and half since the last day of my chemotherapy treatments. When that day came I thought “this is great, I’m gonna ring the bell this nightmare is gonna be over. I’m gonna wake up and be back to the life that I knew.”

Well I did ring the bell, but the nightmare wasn’t over and by no means was I back to the life that I knew. And I still don’t have my body back. But I will let you in on a little secret I’ve learned along the way, I will never have that body back. So now the task is to embrace my survivor status— what does survivorship mean what does that look like?

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I find myself going round and round and round with this question over and over again what does the survivorship look like what is it all about what does it mean for me? The answer is only I can determine that and it’s some thing that I’ll be figuring out day in and day out for the rest of my life.

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I’m told there is no right way to survive cancer. But there is a voice inside questioning all the things happening to my body. The frustration with certain limitations in movement and the persistence of pain has me wondering—what’s wrong with me, my body? _____________________ I’ve been fighting for over a year to have my pain addressed. I’ve been fighting to have someone help me understand why I have so much pain and what can be done to eliminate it altogether at least minimize it so it stops being the central focus of every day. 

 You see for over a year every morning when I wake up I am met with a searing stabbing pain in my lower back. At first i feared it was tumors —more cancer. Once the doctors did bone scans and they determined no there’s no more cancer anywhere and that was a huge relief but then came the onset of nagging unrelenting questions because of the nagging and unrelenting pain. Why am I in so much pain? Then they began to try to address it by giving me various drugs and the drugs would stop the pain but it always came back and the drugs have their own set of side effects making me very drowsy or unable to drive or function. 

Some of these drugs don’t have those kinds of immediate side effects they have long-term worst side effects liver problems kidney problems addiction issues and began to see that pain was the central focus of my cancer survivorship. 

The most frustrating part of it was that it seems like no one on the team was particularly invested in me being pain-free everyone was invested in me figuring out ways to just tolerate and make do. I often feel like I’m somehow ungrateful to be cancer free— I am grateful and I’m in pain.

To deal with it I was going to physical therapy twice a week I was swimming several times per week. These helped but only for a short time and then the pain was back— sometimes worse than before. I went from being just angry and frustrated with the pain to being furious at the medical professionals around me who seemed to shrug their shoulders at my pain and just kind of say “oh well.”

This is the reality of my survivorship.