Facing the Holidays With Mesothelioma...A Few Tips for Patients, Caregivers and Family Members

In my role as VP of Medical and Patient Relations, I’ve had the opportunity to learn firsthand about the experiences of patients battling mesothelioma and the family members, friends, and medical professionals who support them. The past few months have been particularly eye-opening for me. Traveling all over the country to visit the nation’s leading mesothelioma treatment specialists and researchers, I’ve learned about promising new efforts currently in development. In the coming months, I look forward to sharing the latest news about these efforts.

I’ve also had a chance to witness the impact this disease has on the lives of patients and their families. They’ve told me about their struggles to maintain a sense of hope while undergoing painful treatments and struggling with all the complicated logistics of living with a serious illness. They’ve also told me how the holidays can be particularly difficult as families face what could be the last holiday together.

So as the holidays approach, I wanted to turn my attention to this very personal issue. To help me examine what patients and their families face at the holidays, I spoke with fellow nurse Amy Fair. Amy leads Simmons’ medical department, and works closely with patients and families throughout the country. She and I discussed what those facing mesothelioma can do during this time of year to reduce stress and find ways to celebrate that draw on the sense of hope and meaning that are so much a part of the holiday season.

"The main thing is to keep things as normal as possible," Amy told me. "While you can’t ignore the illness, try to keep your celebration from being just about the person who is sick. Pick some favorite traditions and stick to them, and share some memories that involve all family members, not just the person who is ill."

That said, families do have to make adjustments in their celebrations. The goal should be to focus on the things about the holiday that are the most important. You won’t be able do everything. Accept help where you can get it, and focus in on the things that really matter.

You may find that what you enjoy most are very simple activities that allow you to spend time together without requiring elaborate preparations. Set aside time to go through photo albums, watch family videos, or share your favorite memories.

Amy says patients she has worked with have kept a journal to write about their experience of the holiday. It’s hard to ignore the fact that it could be the last holiday together, so commemorating it in this way helps to create a sense of continuity.

Don’t feel obliged to attend parties or accept all visits. Schedule holiday visits around the patient’s rest periods to avoid fatigue. If you’re a caregiver, remember that you can’t care for your loved one if you don’t care for yourself as well. If you can, ask for assistance from your family or your church. Getting away to do some shopping or simply to recharge your batteries can be incredibly helpful.

Be sure to consult with your doctor about what to serve for your holiday dinner. This doesn’t need to mean completely revamping your menu. Small changes can make a big difference for patients who are taking medications that may interfere with digestion.

Remember that pharmacies may have limited hours during the holidays. Make sure you have access to the supplies you need, including refills of pain medications and full oxygen tanks.

Also, patients should plan to take pain medication 30 minutes before receiving company or traveling. The medication needs time to work, and it’s more effective to stop pain before it starts than to try to calm it once it hits.

A few precautions can help take the stress out of travel and ensure that you have everything you need when you land. At the top of your list should be how you plan to pack your pain medication. Take your medication in your carry-on bag rather than packing it in checked bags to avoid the risk of medication becoming damaged by exposure to extreme heat or cold or being lost in transit.

When traveling, always keep your medication in its original bottle marked with the patient’s name. Unidentified medications may be confiscated by airport security. If you have liquid medications that exceed current restrictions for carry-on luggage, contact the airport in advance to learn what arrangements you can make.

If you’ve recently lost a loved one, facing the holidays can be particularly challenging. Often, it can be very comforting to share your memories of your loved one during this season. Amy suggests creating paper ornaments and writing your favorite memories on them. To commemorate your loved one, you can read each memory aloud as you decorate your Christmas tree. Or you may choose to view videos of your last holiday with your loved one as a way to celebrate their memory.

Bear in mind that whether you’re grieving a loss or fighting disease, you’re bound to feel some sadness during the holidays. Honor those feelings, and focus on the comfort you feel surrounded by your community of friends and family.

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