Pastor Carl gently pulled the wagon up over the edge of the sidewalk, trying not to bump the worn-out boy in the facemask who rode in the back. Shortly after Andrew returned from his first hospitalization, Pastor Carl dropped by for a visit and offered to take Andrew for a walk. Andrew didn’t really have enough energy for that, so we sanitized the wagon, bundled him up tightly and put on the mask—and he got to go outside!
After the ‘walk’, Andrew went inside to nap, and the pastor stood outside on the steps to check on us. My husband and I chatted with him and answered questions about our courage and our outlook. Our answers were easy; people had been so amazingly supportive! We had cards and notes, prayers and gifts – support from every corner of the world. It was really amazing and an incredible gift. We felt blessed and loved.
Then Pastor Carl deflated our optimism, “Guys, you know this won’t last.”
What? Won’t last? What’s he talking about?
“People cannot keep up this intensity. Their lives move on; other worries take over. They care, but the care won’t come pouring in like it is right now. As the newness of the diagnosis wears off, people will stop asking how he’s doing, how you’re doing. It’s just how life works.”
He was right on. The treatment protocol for Acute Lymphocytic Leukemia for boys is about 3 ½ years. By the end of a couple of months, cards arrived less frequently, gifts stopped coming and folks stopped dropping dinners off. Prayer support continued in our local church, but not as frequently. That was all right, we understood.
The world has to keep moving.
Around the third extended hospital stay, family members from far away came to visit. They sat in the hospital room and shared that while they were there, in a bigger city, they were going to do some school shopping. That made sense to me. Then they shared that when they were done shopping, they were going to go jet skiing on the river. I was so stunned! I didn’t say much, except, “Oh.” But after they left, my mind reeled with the fact that out there, outside these hospital walls, people were continuing normal activities. Not just necessary activities, like school shopping, but fun activities like jet skiing and birthday parties.
The world had kept on spinning while we remained sequestered in that hospital.
The first year of treatment was so incredibly busy we didn’t really notice the world around us much. We had two or three appointments a week (all more than an hour away from our home) and so many different medications and expectations that we just put our heads down and soldiered on.
The people around us had lives, and out of necessity, many lost contact with us.
But then year two brought new challenges; Andrew’s hair started coming back in, which was wonderful, but the steroids that accompany chemotherapy were taking their toll on our little guy’s temperament. The girls were tired of their lives being run by chemotherapy schedules and mom and dad had reached a new stage of exhaustion.
And the world had moved on.
One day, toward the end of the third year of treatment, I was looking over the treatment protocol and realized we didn’t have long left. I felt like I could start breathing again and I looked around me for someone to celebrate with. In talking with friends and even family, I realized that for most of them, the drama had ended a while ago. My need to celebrate was met with polite looks and smiles.
Their world had moved on.
My world had stuck in the day-to-day reality of chemotherapy, medications, food and health concerns that were constant, behavior modifications, education and care of all three kids, and my own increasing anxieties.
Now where in the world did I fit in?
I suspect this skewed view of life is a reality for cancer (or any long-term illness) patients and their caregivers. We focus so much on remission; health and a cure that we forget that “normal” still exists.
I don’t know that we can change that reality. I don’t even know that we should! It’s not wrong for us to focus on our loved one and to do our best, nor should we even apologize for it. But maybe there are some things we could do to keep in touch with reality and not feel quite so alone.
- Communication is key! Keep those who care as up-to-date as possible. There are resources via the Internet. You could do an email list for those that want to stay in the loop. You could set up a Facebook page, or a blogsite or a CaringBridge site that easily lets people know what’s going on without you having to up-date more than one place.
- Don’t be afraid to ask for what you need from those around you. Often it may seem as though no one is in touch with what you or your patient needs; but maybe that is because they don’t see your need. Maybe you look so efficient that they don’t think they need to help any longer! Even on year three of treatment I had friends who were there with the tiniest hint from me! Lotsahelpinghands offers help connecting people who need help and those who can help
- Use positive self-talk to help you remember that people care, but that they have lives that require living. Just because others continue to work, to play and just to live life, doesn’t mean they’ve forgotten you or your
- As you can handle it, keep up-to-date on others’ lives so that the world is not moving on without you. I say, “as you can handle” because there were days that I did not want to know reality, that I couldn’t handle news, and everyday life events were hard to deal with. But other days it was a delight to release myself in the joys of other people; weddings and happy events that helped me remember there was life beyond chemotherapy.
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