by Cindy

One thing that doesn’t get talked about a lot when you are in cancer treatment, is what happens after that treatment is done. You’re sent back into the world, but what are you supposed to do now? You have been in survival mode for months, focusing on nothing else. Now you must try to get back to life with no one telling you how to navigate your new chapter called Survivorship. But what is life after cancer?

When my treatment was over, I thought that I would feel a weight lifted off me. I thought I would feel grateful and happy. I was ready to dance under the stars and soak up the sun. The nightmare was over, they got the cancer. When I got the call that I was NED (no evidence of disease), I was sitting in the parking lot of Costco, while my husband was inside. I imagined that when that call did come in, I would be running and screaming with joy, but I didn’t feel lighter and happier, instead, the world felt heavier. I was scared. What happens now that I am no longer getting the life-saving treatment? Will it come back? Will I be walking around the rest of my life with cancer hanging over my head like a dark cloud that will one day storm over me? I was never told that survivorship would be this hard. I often feel sad, anxious, and traumatized from everything I just went through. One thing for sure you do get with survivorship is medical PTSD.

You can’t go back into the life you once knew. You are a different person. The exhaustion I felt, and still feel, is tremendous. I’ve never been so tired in all my life. I was trying to return to work and be a mom to a toddler, wife, and friend. It was overwhelming and I felt like I was failing at it all (to be honest, I still have a lot of those days). There were days when I couldn’t keep my eyes open, in the literal sense. I had to take a moment to lie down and I was asleep as soon as I did. Although it has gotten better, the exhaustion is still beside me. She feels like a new companion that I will have for the rest of my life. I know a lot, if not all cancer survivors are on some form of medication afterwards. For me personally, I am on Tamoxifen, which is a hormonal therapy drug. The side effects of this drug are hard. I have pain in my feet, sometimes to the point where it hurts to walk. When my period does come (another thing that is completely messed up because of chemotherapy and medication), it can last up to a month, it’s so heavy nothing but adult diapers help contain it and my hormones are so out of it, for about 2 weeks I am extremely depressed, and I even have suicidal thoughts. I absolutely would never act on these thoughts. I have too much to live for now. I am supposed to be on this drug for 10 years in total. I’m just over 2 years into it. Does this mean for the next 8 years, whenever my period comes back, I have to go through this? It’s hard to try and hide this from family and friends. Those two weeks are my darkest. One silver lining is that sometimes it can be months before this happens again. At least I can get a little break. No one told me this. I found this out on my own when it started to happen.

I also have Lymphedema in my right arm as a result of my lymph nodes being removed during my mastectomy. For the rest of my life, I will have to wear a compression sleeve and get therapy on my arm so that I can keep it under control. The day I got my first sleeve, I walked back out to my car and sat there and just cried. I realized that I would forever have a reminder, every day of what I just went through. At the same time, why am I not happy that I am alive?

There is so much to unpack once you hit survivorship. We are not given a pamphlet to read on our way out of the hospital.  I can say for certain, that one of the things that helped me navigate this new life, was connecting with others in the cancer community. One of the best things about social media is the ability and easy access it is to find them. You find beautiful people who understand exactly how you are feeling, especially when it is hard to put into words to family and friends how you are feeling. It’s the worst club to be a member of but has the best people. I will be forever thankful that I can share my personal story as I know others sharing theirs is what helped and is still helping me navigate my new world. Survivorship is weird, but I’ve learned that it can be navigated with the help of family, friends and especially the cancer community. Let’s keep the discussion open and ongoing. It’s time to talk a little louder.  

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