5 Truths About Life Post Treatment

Navigating New “Normal”

It was March of 2019 when we left the comforts of St. Jude Children’s Research Hospital and started our five-hour trek home. If you haven’t read about our pediatric cancer story, you can do so here. We were moving home after being in Memphis, five minutes from the hospital, for more than a year. The feeling is similar (I can only imagine) to like being on a trapeze without a net..in the middle of a tornado. It was when we moved home that we started to see the truths about life post-treatment. We had been home a few times throughout treatment, but we always had the peace of mind that we were heading back to our life with a safety net. We quickly found out moving home was nowhere close to being “done” with the battle. That is such a misnomer. I recall early on, just wanting to get chemo started so we could get through treatment and find our way back to “normal”, if Cooper was to survive. What a strange thought now. Doesn’t even make sense, but we don’t know what we don’t know, especially in the beginning days and weeks.

Life after treatment is anything but “normal”

This is going to sound heartless for moment, but hear me out. Your old “normal” has left the building and won’t be returning. It took us a while to really grasp the enormity of this feeling. But, I’m also here to tell you there is opportunity to grow and adapt to a new “normal” you can love even more. You will mourn the life that could have been, especially for your children. But, you will find strength within yourself and each of your family members you wouldn’t have seen otherwise.

There were many unexpected challenges when treatment had finished. If I heard it once, I heard it a million times.. “Isn’t it such a relief to be done?” While the words were never meant in harm, I silently laughed and thought.. “DONE”.. that will never be the case. Here are just a few challenges we were not prepared for once treatment was finished.

My prayer to you is this post can help you to understand some of the challenges you and your family may be facing if you are in the battle. Or, help provide empathy for family or friends that may be walking through this journey.

Life with cancer doesn’t end after treatment or clean scans.

It’s a common myth that once treatment has ended, it’s all over. You made it through! You will quickly realize your journey is not over. It is time to celebrate and take a moment to reflect on the valleys and the mountains your family has been through. Maybe spend some time in full gratitude for ‘surviving’ and maybe even growing through the journey. The treatment part of the journey may be completed and that is a miracle in itself. Give yourself, your child, and your family a moment to feel that relief.

The transition into life after treatment is yet another chapter in your story. Chemo is a foul necessity in most cases. Depending on the treatment, the side effects can be life long. It is my prayer that if you are reading this, you already have scoured the internet about your child’s treatments/medications, etc. so this is not new news.

Aside from the physical damage of the treatment, more than likely the trauma of the experience will settle in for a while. Common feelings after treatment includes confusion, sadness, depression, anxiety, appreciation, survival guilt, and others. You and your family have spent the last months or even years, dealing with heavy stuff and you haven’t been able to feel it all while in survival mode. Now your body, mind and spirit want to catch up. Another area that is often overlooked is supporting the marriage when you arrive home from treatment. Personally speaking, this was almost as hard on our marriage as when we had to divide at the beginning of treatment. If you find that this is the case for you and your spouse, I encourage you to jump over to my other post 5 Ways to Protect Your Marriage Through Treatment for tips, encouragement and prayer.

You will see life through a whole new lens

After a long hard fought battle with childhood cancer, everything looks completely different in life after treatment. For some, there are several life altering side effects that impact the child and in turn the parents and other family members. The term ‘care taker’ takes on whole new meaning. For some, treatment was not enough and life looks completely different. We often found ourselves heartbroken for those we became friends with when all of the chemo, radiation, and surgeries were just not enough. As a parent, we can’t even begin to understand. For us, my son came out of treatment a different person. Neuropathy, panic attacks, anxiety and fear were just a few of the long lasting side effects. On some days, however, he has a totally new lease on life. He continuously works to rebuild his stamina and strength his feet. He has been inspiring just as much as a human being as a kid. The other day, I watched him run about 100 ft and just stood in awe of him. After almost 70 weeks of hard chemo, he was up and running. At that moment and so many more, I stopped to just be in awe of the literal battle he had been through and how God knitted such an incredible human together. His body has defied every single odd given by doctors. He is truly a walking miracle.

It’s Time to Start the Healing Process

During the first weeks/months post treatment, you find yourself and your family trying to readjust, yet again. Since diagnosis, life has been constantly about adjusting. Leaving the hospital and finishing treatment should feel like a relief, but it’s anything but relief.

You quickly find yourself worrying about every single thing. Every ache and pain sets you into a tailspin of worry. Is it cancer? All rational really gets tossed out the window..not to paint a dark picture. But as parents, we tend to worry about our healthy kids, let alone one that just finished treatment and now things are supposed to be ‘normal’. The anxiety and fear is almost just as high as it was while in treatment. A common after-effect of finishing treatment is PTSD, many times for both the parents and the child. Trying to navigate this new normal and coming out of survival mode, is really impossible to get through without support from church, family, friends, and possibly a counselor.

PTSD is a common side effect

For me, personally, I found myself in a deep depression. Trying to keep up with work and constantly in tears; terrified the cancer was back. One day I was so completely convinced the cancer was back, I had planned out our trip back to Memphis before lunch and in scans by the end of the day. It wasn’t logical and a friend talked me off the ledge. I was able to calm down and give it another night. The next morning, he hopped out of bed like nothing was ever wrong the day before. Counseling may not be the answer for you, but I found a Christian counselor that did and still does wonders for me. We utilized methods that allowed me to feel a lot of the emotion that I had suppressed during my son’s treatment. I hadn’t been able to feel a lot of those feelings during those moments because we were in survival mode. Find your people. If you take nothing else out of this post, FIND YOUR PEOPLE! The friends that know when you say you are “okay”, they know you aren’t. They are the people that just show up and keep showing up to be there for you. They are the people that you can safely shed tears with and they will feel and cry with you.

FIND YOUR PEOPLE

Most of your friends & family have moved on, but you aren’t even close

When you arrive home, you and your family may have a well deserved King’s welcoming. Within a few days after that, you quickly find that you are different. Everything about your life has changed. You are a completely different person. Your family has survived a traumatic experience that has left everything about you different. Except, everyone around you is still the same. It’s hard to reconcile and understand. You continue to mourn the life and relationships that you may have had prior to diagnosis. And that is okay. As I mentioned above, I looked to counseling to help me reconcile the emotions that came along with these life changes. She mentioned to me there are times when there are relationships come into your life for a season. God places them in your life for a specific reason and there are times when that season is fulfilled. Not that the relationship is over, but it is different. You will find this to be true in every sense. This was tough. It still is, not going lie. I miss our past relationships. But, throughout this journey, God has also placed people in our life that we have grown to need. They have become part of our foundation, in life and in Christ. They became our people.

Reevaluate your priorities

When we came home, Cooper was still on maintenance therapy and taking chemo twice a day. Through out treatment, we were able to really focus on Cooper, thanks to my incredible employer and my husband being off work. Once we were home, we found it hard to not see everything with a cancer lens. We had been given a second chance at life with the four of us. Now, working/earning money isn’t the first thing on our list. We strive every day to make our priority God > marriage > kids > fun > work > friends/family > all other stuff. Putting God at the forefront allows us to be thankful in all things and have gratitude for what we have been given.

Heavenly Father, We praise You for guiding us through this storm that is still raging like the sea. Lord, You are an almighty and gracious God! We pray for Your steady hand to continue guiding us through our new ‘normal’. You have shown us great blessings even in the darkest moment and we are so thankful. But our journey is not over. Please give us the peace of mind as we navigate through this journey in our relationship with You, our Family, Church, friends and work and especially with each other, Lord. Help us to be patient with one another and know when to have grace. Also help us to continue to glorify You in all things! Amen.