You’re going to get the answer in the first sentence…nobody tells you that surviving cancer is hard! I’m not talking about the treatment and the fight, we all know that’s hard. I’m talking about what happens when you’re done with treatment. Sounds strange to think that when you’re done with “the fight”, it’s not over. Surviving is hard. To be clear, I’m not complaining about surviving, I’m telling you what nobody tells you.

 

Why Is It Hard To Survive?

People think that when you’re done with cancer treatment you go back to living your life. “Back” to whatever your life was before you went to hell and back, likely more than once. Why would we go back to who we were before? When you come out on the other side you are a completely different person.

First, you’re a force. You’ve asked your body to do things that seem close to impossible and it’s risen to the occasion.

Second, you’re exhausted. You and your body need rest. I was an on-the-go person before my diagnosis and then I needed naps and had trouble getting the laundry done. I certainly didn’t go back to who I was before in the rest department.

Third, and maybe the most significant, you have learned things that could never be taught in a book. Some good, some bad but you’ve received an education on perspective. It takes time to sort that out. You don’t finish treatment and say “Ok, now I value time and am going to choose how I want to use my precious time.” No, you say, “I’m exhausted, I only have the energy to do XYZ and ABC is going to have to wait”. That takes figuring out because if you were like me, you expected yourself to go back to being the person you were and everyone around you expects that too. Couldn’t be more wrong and you know what? I like this me much better than I liked that me.

 

New Normal

The phrase “new normal” is something we are hearing a lot these days relative to COVID.  Our world has changed, and we need to find what that new normal is. The phrase is something that has been common in the lives of cancer patients for a long time.  When patients finish treatment they are then forced into finding their “new normal”. I’m not a fan of the saying but it does describe that life changes and what it becomes after treatment but new normal sounds so boring. After surviving it should be called something more exciting. Any suggestions?

When I finished treatment after my first recurrence which was my most significant diagnosis up to that point, I didn’t know that I would have to find and adapt to a “new normal”. Nobody told me what to expect and it was a struggle. I probably fought to get back to who I was before vs knowing to, and finding a “new normal”. It was an expectation I had and set for everyone around me. I couldn’t have been more wrong.

 

Schedule and Purpose

My life had been driven by the schedule of when treatment would be, how I would feel, blah blah, and was not a schedule set by me. It was set by cancer treatment. Once treatment was over, I went through a period of not really knowing how to spend my time. I wasn’t sure what to do with myself.  I was suddenly able to set the schedule and choose what I wanted to do, but in many cases, I didn’t really feel like doing all of the things that I thought I would be doing when treatment ended. Napping was what I wanted to do more than anything.

When I was going through treatment I knew what my job was, to fight cancer. Now that it was over I needed to figure out my purpose. I still think about that now. The Linda that existed before going to hell and back eight times was gone forever, and you know what? I was good with that but I also struggled to know what to do with myself. I felt like I should be doing something. Becoming a resource to others has given my journey purpose.

 

Not The Same Person

Once I learned that I wasn’t the same person I came to the realization that I liked the new me much better. I didn’t stress about the things I did before. Perfection wasn’t an option, acceptance was. I could create a standard, or regular pattern of what was important to me and not fall into bad habits again. I could choose where and how I wanted to spend my time and not feel obligated. But those realizations didn’t happen the day I heard that my cancer was gone. It was a process.  A process that included therapy for PTSD. There were, and still are many triggers. I found this article on the Dana Farber Health Library site that gives an overview of cancer and PTSD.

There are also more challenging parts of the new normal for cancer patients. The first I touched on above, the expectation of everyone around me that pre-cancer Linda would be back. Once you “beat” cancer people think you check it off the list and move on living the life you had. Patients don’t always know how to communicate to everyone around us because we aren’t even sure what’s happening, but we have been forever changed. So people around the patient, be patient and have zero expectations. Zero. Your loved one will figure it out and get in a new groove.

 

Physical Changes

Our bodies are also forever changed which is a tough reminder to see in the mirror every day. Some of the side effects may not last forever but they are there now and can be ongoing. There are the obvious changes like scars from surgeries. Those aren’t going away and in many cases the scars on the outside can create even deeper scars on the inside. I often say I look like a rag doll. The bikini ship had already sailed for me but it’s now lost at sea. That aspect of surviving cancer hasn’t been hard for me but I know many women who have really struggled with the scars on their bodies. I wonder if that’s the case for men too. I touched on this a bit relative to weight and menopause in a previous post back in 2012.

 

The Scars You Can’t See

After my hysterectomy I struggled with the scar that was left, not on the outside, but the one that took away my ability to have more children. That’s a deep scar that many women experience, and it hurts. Deeply. Straight through the heart is where that scar hurts. A therapist told me to let myself grieve that loss and in a year if I still was struggling then we could revisit it. The permission and direction to grieve is what got me through that.

Radiation can mess with your stomach and there’s a “new normal” of running to the bathroom emergently after a meal. That’s definitely something that you need to adjust to and plan for. Hopefully that goes away over time but there’s no telling how long that takes. I think that’s enough info on that topic.

Chemo brain was something I had to figure out and years later still struggle with it. I went through cognitive testing and it was determined that I had some “deficiency” (that’s not an empowering word, at all) in my executive function. I’ve had to figure out how to live with that. Now I do most of my work that takes brain power in the morning. My kids will tell you that once it hits a certain time “I get tired” which has become a joke but it’s true. This is me trying to help my son with college scholarship applications.

 

Set The Expectation That Surviving cancer Is Hard!

As a patient I had to learn to not only be kind to myself, but set the expectation for myself and others of what I could, and would be able and willing to do. The would and willing parts of that sentence are equally as important as the could and able. It’s important as a patient to not let the expectations of others, or the old you, drive what you are capable and willing to do as the new you.

Figuring out the good and bad and embracing and learning to live with all aspects of my new normal took time and still does. I think that’s just called life.