Coping with Mesothelioma During the Holidays | Online Support Group
Well, it is that time of the year again. Our normally busy schedule can feel fuller with extra things to do, people to see and gifts to buy. When individuals are also dealing with a diagnosis of mesothelioma, it is easy to see how they could feel stressed out and just want to skip this whole season.
There are many emotions that mesothelioma patients and their loved ones feel at this time of the year. While living with a serious disease and an unknown future, it is common to worry about future holidays and what they will be like. You may also feel happiness or relief to have made it through this year and be looking forward to a brighter year ahead.
You may feel exhausted from dealing with your disease and its treatment, or you could be tired from your caregiving duties over the last months. It is also possible that you are feeling some excitement at being able to visit or be visited by family and friends whom you haven’t seen in a while.
Good Stress and Bad Stress
Did you know that there is good stress and bad stress? Good stress is sometimes called “Eustress” and occurs in situations that we would consider either fun or positive. Psychologists report that examples of eustress include riding a roller coaster, getting a promotion at work, having a baby and enjoying the holiday season.
“Distress” is known as bad stress because it feels uncomfortable. We feel distress when we lose a job, get a divorce, grieve a loss — or are diagnosed with mesothelioma. Distress occurs when our perceived obligations or responsibilities outweigh our perceived ability to meet them.
Many times our distress is related to expectations of ourselves or how things should be. Most of us have expectations about our holidays that include how we should feel, who we would like to be with, what we would like to accomplish, etc. These expectations can come from our memories of previous holidays. They can come from what we see on TV or movies about the holidays. Our expectations can also be based on what our family or friends do to celebrate the holidays.
Sometimes it is the unrealistic expectations of how our holidays should be that lead us to feel distressed. If we tend to be a perfectionist, then we may only be happy if our holiday decorations look perfect, our gifts are wrapped immaculately and everyone in the extended family gets along harmoniously.
We may also have unrealistic expectations about how much money we should spend on gifts or how many parties or events we should attend.
Have Realistic Expectations
Having realistic expectations of ourselves and our loved ones during the holidays can lead us to feel that good kind of stress.
Given that patients and their caregivers are already tired and stressed out as they cope with mesothelioma, having realistic expectations of during the holidays is even more important.
To create realistic expectations, it is helpful to start by thinking back over our memories of previous holidays.
- Write down the things you remember enjoying.
- Think about holiday traditions or foods brought you a sense of peace, belonging or comfort?
- Did you used to walk or drive around and see the lights and decorations?
- Did you go caroling with friends?
Once you have made your list of positive holiday memories, pick a few of the more manageable and meaningful events that you would like to do and let go of the rest of the expectations.
Another way to reduce your distress is to ask for help or to make some modifications to your usual holiday traditions. For instance, if you have always hosted (including shopping and cooking) a holiday meal at your home, you can still do that. Just ask that everyone bring a dish. Take advantage of any offers to help that you may have received since your diagnosis, and ask for help shopping or decorating.
Take Time for Yourself
Besides paring down our holiday to-do list so that it is manageable, we can also make it a priority to schedule some “me” time. Whether you are a mesothelioma patient or a caregiver, it is important not to let our to-do list squeeze out those simple things we regularly do that keep us balanced physically and emotionally.
Making time to watch football, meet a friend for coffee, get a haircut or read may seem frivolous and unproductive, but these little bits of time that we take for ourselves are the very things that allow our batteries to recharge so that we can continue to manage and enjoy life.
The holiday season does not need to stress you out to the point of making you feel like the Grinch. If we make sure that our holiday expectations are both meaningful and doable, then we can enjoy the “eustress” of the holidays and avoid the “distress.”
Many people affected by mesothelioma say that as a result of their cancer experience, they have learned to let go of the unnecessary stress of the holidays and reconnect with the people and traditions that are most meaningful.
Questions and Answers from the December Online Support Group
Patients and caregivers asked a number of questions during the recent online support group. Here, we include answers to some of them.
Q: Can you explain palliative care and its benefits?
A: Palliative care refers to any treatment that aims to relieve symptoms, pain, stress or suffering caused by a disease. Palliative care is regularly recommended to patients receiving treatment for chronic, curable and incurable diseases. The primary benefits include pain relief; reduction of symptoms, side effects and stress; and improved quality of life.
Q: Do most people with mesothelioma have surgery, or does it depend on when you’re diagnosed?
A: It depends on the stage of the cancer when the person is diagnosed. Few mesothelioma patients are diagnosed in an early stage, but those who are may qualify for aggressive surgery.
Most mesothelioma patients are diagnosed in a late stage, at which point the cancer has spread too far for surgery to completely remove all of the cancer.
Q: Do most mesothelioma patients undergo more than one type of treatment?
A: Many people with mesothelioma will use more than one treatment to manage the disease. This approach is called multimodal therapy. Also, once the doctor feels that the cancer isn’t responding to the current mode of treatment, they often will change it.
Q: What is the most common chemotherapy drug pairing for mesothelioma?
A: Chemotherapy for mesothelioma often pairs Alimta with carboplatin or cisplatin. Alimta is also commonly combined with gemcitabine.
Q: Is there a true cure for mesothelioma, or are the people called “survivors” actually living with the cancer?
A: There is no cure for mesothelioma, and only a handful of spontaneous regressions have been reported in history. As a result, nearly every long-term mesothelioma survivor is living with the cancer. Many forms of cancer are managed with long-term treatment rather than ever being fully cured.
Q: Is gene therapy available for mesothelioma?
A: Gene therapy for mesothelioma is currently only available through clinical trials. The U.S. Food and Drug Administration (FDA) has not approved gene therapy for the treatment of any condition to date.
Q: Is it normal for pleural mesothelioma patients to experience pain in the chest and back that is hypersensitive to light touch?
A: Yes, and this could be an indication of nerve pain. Nerve pain can feel sharper and more intense than other forms of pain. This pain could be caused by pleural thickening, effusions or tumors that are placing pressure against nerves in the chest area. Medication is available to treat the type of nerve pain that mesothelioma patients experience, so be descriptive with your doctor about what your pain feels like and where it specifically hurts. Some patients find relief with alternative treatments like acupuncture.
Q: Can you explain pleural effusion, and address what causes it to develop, if it causes pain, and if it can be tested for cancer?
A: Pleural effusion refers to a buildup of fluid in the pleural space surrounding the lungs. The accumulation of fluid can occur when cancer cells block the microscopic drainage sites in the pleural lining. Cancer cells themselves can release fluid that also contributes to excess pleural fluid. Some pleural effusions are asymptomatic, and some cause pain because of inflammation or by placing pressure on nerves.
Pleural effusions can be tested for cancer, but the results cannot provide a definitive mesothelioma diagnosis. A tissue biopsy is necessary to confirm the presence of mesothelioma. Several treatments and medications are available to treat pleural effusions effectively.
This material was shared in the Dec. 11, 2013, mesothelioma online support group.