Survivor’s Tips for Managing Post-EPP Pain and Sleep Issues

I expected to feel some pain and fatigue after my extrapleural pneumonectomy surgery. But I hadn’t fully anticipated how just when I needed more rest, my postoperative discomfort would make getting that much-needed rest so challenging.

Rest is important as you prepare for surgery. Symptoms of pleural mesothelioma before surgery can make restful sleep challenging. Chest pain, coughing, night sweats, fever and difficulty breathing can all result in sleepless nights.

Getting enough sleep is an especially important component in recovery from mesothelioma treatment. In my experience, getting enough rest can be a challenge. This was especially true following my surgery. 

EPP removes the affected lung, as well as part of the lining around the lungs, the lining around the heart, the diaphragm and nearby lymph nodes. It’s an aggressive surgery with a challenging recovery.

Challenges and Tips for Finding Relief

Understanding the factors that contributed to my sleep challenges helped me manage them. If you’re experiencing issues getting enough sleep following your mesothelioma surgery, these tips may help you as well. Be sure to speak to your doctor if pain persists or worsens.

Challenge: Pain levels are high at bedtime.

Getting sleep can be especially difficult if pain levels are high. Pain management can be challenging for mesothelioma patients.

Tip: Change the timing of pain medication before bed.

If pain levels are high at bedtime, a change in the timing of when you take your pain may be beneficial. Timing the taking of your medication so the maximum effectiveness of the medication coincides with bedtime can help. 

In other words, if the effectiveness of a pain medication tends to wear off before the medication can be taken again, it’s best if it’s taken a little while before bedtime. This allows it to take effect and stop or diminish the pain before attempting to go to bed. 

Challenge: It’s hard to find a comfortable sleep position.

Sleep position can be a huge factor in trying to go to sleep. It can be very difficult to find a comfortable position because of both pain and breathing issues.

Tip: Use a variety of pillows or an adjustable mattress.

Finding a position that relieves pain and allows you to breathe comfortably can be easier with multiple pillows of varying sizes, shapes and firmness. Having a bed that raises and lowers the head and legs may also help. 

Because it’s uncomfortable to stay locked in one position for an extended period of time, this process will have to be repeated more than once during the night. Your mesothelioma caregiver may be able to help you rearrange the pillows at intervals that work for you. 

Challenge: You struggle to calm your mind as you try to fall asleep.

Another factor that can greatly affect your ability to sleep at night is whether your mind is calm or running. This can actually be the most difficult obstacle in getting rest while recovering from surgery. 

Instead of going fully to sleep, you can enter a state that I would call a semi-sleep. I found I’d be unable to go fully to sleep. My mind would run wild with thoughts and dreams. 

The result of this is hours of restlessness and feeling more tired when morning comes than you felt the night before. Some pain medications are known to contribute to this phenomenon in some patients.

Tip: Create a bedtime routine.

A pre-sleep routine where you engage in an activity that consciously focuses, but at the same time slows your mind, can help you get to the point that you can sleep. For me, reading something that is “boring” works well. 

You don’t want to over-stimulate your mind. Avoid watching movies or anything else that will over-stimulate you for some time before bed. Just focus your mind and, in a sense, wear it down. 

It’s important that what you take in is positive, or at least neutral, in mood. Listening to calming music, praying or meditating are other things that may help. Natural remedies like chamomile tea before going to bed can also be beneficial.

Challenge: Pain persists or worsens.

Despite trying these approaches, your pain continues to prevent you from getting sleep. Pain, sleeplessness and other post-surgery side effects worsen.

Challenge: Talk to your doctor right away.

Talk to your doctor immediately to ensure you aren’t experiencing complications or other health concerns. Let them know what you’re feeling and what pain management approaches you’ve tried.

Talk to your health care team about trying different pain medications. There may be other things that your doctor can prescribe that will address the problem. 

As the pain recedes and strength returns, it should become easier to get rest. Improved sleep will help your recovery.

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