I thought when it was over, it would be over. That life would go back to normal and slowly I would forget about the nightmare I have lived for the last eleven months. I didn’t realize that is not the way it goes. No one told me that when you book a trip to Cancerland, you stay for a very long time. No one told me that it keeps going.
I remember early on in treatment I learned about the term “late effects.” I was mortified and frightened by the thought. “There are lasting effects of chemo? That can last for months, years, a lifetime?” Ken and I asked about this at one of our appointments. I don’t remember exactly what we were told but there was a “we’ll take it as it comes” approach. And with that, we didn’t get much more information than what was on the internet.
In many ways I am lucky. At only three months post chemo and two months post radiation, I’m feeling pretty good. I have a lot of energy, my chemo brain is mostly gone (I still forget things here and there like names or details of things I need to do), I don’t have any heart problems or nerve damage. I’m lucky. I’m so, so lucky.
But I am still having problems with my arm. The cording is persistent and will not go away. New ones have formed in my hand and fingers. The swelling is getting worse, too. My physical therapist still has not diagnosed me with lymphedema but it hasn’t been ruled out either. Cording (or Axillary Web Syndrome) can cause swelling and she said my cords are stubborn and moody. They could be causing the swelling. But after weeks without answers I’m getting nervous and anxious. What if it is lymphedema? What will my life be like?
I already have been given a compression sleeve and glove. I hate it. It’s ugly and uncomfortable. Will I have to wear it the rest of my life? What about lymphatic massage? It’s time consuming. Will I have to find time every day to do it?
Why did no one tell me about this? I only found out about lymphedema through my own research. It was never mentioned to me. And when I asked about it, it wasn’t a major concern. But I was concerned. I was given a pamphlet to read. That’s it. And now here we are.
I have been caught off guard by the fact that, almost a year later, I am still having health problems. I was not prepared for the fact that when I had cancer, I felt great and now that the cancer is gone I have medical issues, possibly life long ones. I’ve been taking it really hard. I cry every day. I’m irritable and I take it out on the people closest to me. Most of all, I’m scared. If this is happening to me now, what’s next? What’s in store for me? Will I be able to keep standing up to the challenges that I will have to face? I’m being broken down. Beaten down.
I don’t want to do this anymore. I want to leave Cancerland.