One of the most common complaints I hear working with people who have cancer is that they can’t sleep. We all know the misery of not being able to fall or stay asleep, and the misery that awaits the next day, including fatigue, irritability and foggy headedness. And being awake at night, especially when you have cancer, is lonely, scary and frustrating. All the worries about your diagnosis, treatment and future are at their most intense when you don’t have daytime light, noise and people to distract you. Call it the 3am Misery. Understandably many cancer patients ask their doctor for a sleeping pill like Ambien or Xanax. While this may be an easy solution, it might not be the right solution. So before you assume that sleeping pills are the answer, pause. Have you and your doctor talked about what is really causing your sleep problem?
For people with cancer, sleep problems generally fall into three categories: daytime escape, after-dark fear, and body aches. Knowing your category is the first step in dealing with the sleep problem.
“Wake me up when it is over!” Who would not want to escape from cancer? Escaping into your bed during the daytime and letting sleep take you away from the cancer reality seems pretty appealing. Unfortunately, the bed escape can backfire. The more time you spend in your bed during the day, the less time you sleep at night. If you are in the daytime escape category, the remedy for sleeplessness is not a sleeping pill, but a plan that helps you stay out of bed during the day, so you may rest well at night.
“When I turn out the lights, I worry I am going to die.” Intense fear about your cancer prognosis, heavy grief about changes in your life because of cancer, racing thoughts and catastrophic thinking (“there are absolutely no good days ahead for me”) are symptoms of anxiety and depression. Fortunately, anxiety and depression can be treated, but not with a sleeping pill. In fact, sleep medicines may make some depressive symptoms worse. Strategies to manage after-dark fear include helpful thoughts (“I will deal with this in the morning”), limit setting (no cancer internet searches before bed) and relaxation (an evening bath). These strategies need to be practiced everyday to be most useful.
Body aches, otherwise known as treatment side effects, are major contributors to 3am Misery. Pain, either aching muscles or sharp, shooting nerve pain, keeps you from falling or staying asleep. There may also be cottonmouth, urges to pee and nausea. Getting rid of body aches requires a bit of work, but worthwhile if you are able to turn down the volume on your symptoms and avoid 3am Misery. Keep track of your body aches in a written calendar and talk to your oncologist about your symptoms. If you have “as needed” medicines (prochlorperazine, hydrocodone, oxycodone), definitely don’t take them without keeping track of how they work for you. Write down the date, your symptom on a scale of 1-10 and then try one medicine at a time. Be sure to only continue with the pill if the medicine allows you to be more awake and active during the day. Some people develop body aches from too little movement as muscles and joints get deconditioned during cancer treatment. Talk to your oncologist about a physical therapy referral. Safe daytime movement will certainly improve your sleep at night.
Below is a 7 Point Program that may be your best shot at minimizing 3am Misery. Different parts of the program target escape, night fear and body aches.
The 7 Point Program
1. Absolutely no cancer talk or internet searches after dinner; repeat “I will manage that in the morning.”
2. Pick a bedtime and a wake time with 8 hours in between. Write and post the times around your home. Be a stickler.
3. Caffeine is off limits after noon. No smoking either (nicotine is another stimulant that kills your sleep).
4. Pick a helpful thought. “This shall pass.“ Repeat slowly & calmly, while you breathe slowly & deeply, 3 times before bed and if you waken in the night.
5. One nap a day max, 45 minutes or less, before 4pm.
6. Motion is lotion. Walk the dog, or with a friend, daily (if your oncologist says ok).
7. Chill for one hour before bedtime (stretch, read, listen to music or journal).
Of course, everyone’s medical status is unique. For example, people with very advanced disease or a heavy treatment burden may need extra daytime rest. So adjust the plan to fit your specific condition, then challenge yourself to stick it – all 7 points for 2 weeks. If you’re still having trouble sleeping, talk to your doctor.
In certain situations sleep medicines and pain pills may be necessary, but you should know the source of your sleep problem before you start a sleep medication. And the goal of any medication or sleep program should be to feel more energetic, happy and clear-headed over time, so that you can well not just tonight, but in the weeks and months to come.