Category: Nurse’s Corner
Balancing Mesothelioma with the Coronavirus Pandemic
When someone is diagnosed with malignant mesothelioma, the battle is both mental and physical. The symptoms are numerous and some more frightening than others. Mentally it can have an outsized effect on one’s peace of mind, affecting your physical wellbeing as well as your emotional wellbeing.
So how does a mesothelioma patient keep mind and body in sync during a strenuous time like the coronavirus pandemic?
First, look around at yourself and jot down your physical symptoms. Put factual numbers to paper. A few strategies you might consider include:
- Monitor daily weight.
- Monitor calorie intake if you can, or just list what you eat.
- If you have an O2 sat monitor use that and record the findings.
- If you don’t have an O2 sat monitor monitor, record the distance you can walk each day.
Now that really is the easier part. Mental wellbeing can be a challenge. How do you keep your head in check and not get carried away to dark thoughts and fear? If you are having a hard time being calm, there is a fair amount of advice available. Here are some different approaches:
- Close your eyes, take a deep breath, and exhale slowly.
- Say out loud three things you are grateful for today.
- Connect with others. Talk with people you trust about your concerns and how you are feeling.
- Take a break from news, including social media.
If these ideas aren’t working, contact your primary care provider and they will try to help with your physical or mental challenges at this time. Reach out to your mesothelioma team. Remember that mesothelioma patients are high risk when it comes to coronavirus and the COVID-19 virus’ related respiratory symptoms.
You are not alone. These times are uncharted territory for all of us. We can get through it with help from one another.
Summer Camps for Mesothelioma Patients?
Being diagnosed with malignant mesothelioma can be an isolating experience. Due to the rarity of the disease it can be difficult to cope with having a deadly disease and to remain positive. Coping for many can be difficult, despite support groups, counselors, and family support. Although they all have the best intentions, sometimes just talking with someone who is also on a mesothelioma journey can be helpful.
Summer is a special time of year. Routines are broken and life can slow down a bit. Memories that last a lifetime can be made. For many people summer is the time for camps. Many adults have fond memories of attending camps when they were children. Relationships are formed there, and some last a lifetime.
Camps for kids with cancer are available to help support them through this difficult time. The goals of the camps are to help them feel accepted and as “normal” as possible. There are many different camps nationwide to help children cope with cancer. And now, adults with cancer can turn to camp to learn how to cope with the disease. The camp experience can give a person and their family a chance to form lasting relationships with others who might be on the same journey.
When you Google “adult summer camps for adults with cancer” many options come up. There are a wide variety of camps with different focuses. Camps for women only who are at any point in their cancer journey, whether recently diagnosed or long term survivors. There are camps that conduct retreats and include recreational programs for adults with cancer. Camps for families and caregivers of patients with cancer. Camps to improve the quality of life for children, adults and families whose lives have been touched by cancer.
Some of the benefits of camps for adults include the ability to form relationships, finding new support groups or individuals, or strengthening the relationship that the patient might already have. Another benefit cited is fighting loneliness.
Families and patients with malignant mesothelioma might find that going to summer camp is just what the doctor ordered! Consider trying one out to see if you find a fun way to cope and to make memories that are truly priceless!
Building a Relationship With Your Doctor Can Make a Difference in Your Mesothelioma Care
Relationships are what make life worth living. Throughout life we have many relationships – parents, siblings, friends, teachers, significant others, neighbors, co-workers. People come and go into our lives, depending on what we are doing, where we are living and working. Some relationships are long and fruitful, and others can be short and forgettable.
Not too many decades ago our relationship with our doctor was usually with one doctor, our family practitioner. Then it progressed to specialization, an OB/GYN, pediatrician, a primary care doctor, surgeon, and any other specialists that you might require. Now in the age of specialization and travel, you might have seen your primary care doctor only once, and he or she doesn’t really know you.
An article was just published about how having a relationship with your doctor can actually save your life. Continuity of care is something that is known to improve patient satisfaction and patient outcomes. It makes sense that if you trust your doctor, and he or she has known you over the years, they will be in a better position to know about your illnesses, and more importantly, know what is important to you.
The research was based in the United Kingdom and it involved examining 22 studies from nine countries. The countries involved in the studies were from two studies from Taiwan, and one from South Korea, Canada, U.S., United Kingdom, Croatia, Israel and the Netherlands. The countries had different cultures and different health care systems The studies showed that patients who went back to the same physician had a lower chance of dying, compared to patients who visited different doctors. This was shown in 82% of the studies.
Some of the rationales for this is that when you see the same physician you would talk more freely and give the doctor more information. Continuity of care is an important factor in patients who are satisfied with their care.
Relationships are important in all aspects of life including your medical care, whether it be for a serious illness such as malignant mesothelioma, or a regular check up. Make sure you are comfortable with your relationships – they could affect your health!
Be There Through All the Seasons for Those Grieving A Loss to Mesothelioma
“Summertime and the living is easy,” as we change from Spring to Summer things start to slow down for most of us. The hurried pace we usually live at slows, and many of us take the time to enjoy the weather, our families and vacations. This is the time of year that most look forward to.
One of the most welcome things about summer is that it allows us time to reflect on things and make memories that will stay with us. For mesothelioma patients and their families, this time of the year can allow some time to reflect on life before the diagnosis, and now, living with mesothelioma.
Recently, we had lunch with the wife of a patient who recently died from malignant pleural mesothelioma. His journey had been around 10 months from diagnosis to death. This time was spent in an intense battle. He had chemo, surgery, multiple admissions, and couple of separate rehab stints. Through the dark days of winter he would often say that he wanted to go home. His journey was an emotional and physical strain on his wife and family. They did all they could for him, including taking him home. He died at home surrounded by his family.
In talking with his wife, it was clear that the long days of summer were not something that she was looking forward to. After months of talking with doctors, nurses and therapists, of constantly being on the go, time is weighing on her mind. She is reliving their journey and trying to adjust to long days and longer nights.
How do you help someone who is grieving? Like mesothelioma, everyone’s grief is their own. It is personal and belongs to the person experiencing it. When trying to help, remember you cannot fix or repair their situation. Listen and be there for the person. It is important to be present, listen, and lend the support that is needed, not what you think is needed.
Remember you never know what a person is going through in their own life. Grief happens all seasons. Reach out a hand to help. In today’s fast paced world, there is no substitution for human interaction and support during a difficult time.
Mesothelioma Nurse Discusses Suicide Prevention Resources
Recently, two very public figures, who looked like they had it all, committed suicide. Those closest to them revealed that they had struggled with their demons for many years. When someone is a celebrity we think we “know” them: we know their work, but we do not know them.
This is a wake-up call for all of us to be more aware of how we and our loved ones are really feeling. Suicide happens because the person wants their overwhelming ‘pain’ to end. According to research, 90% of people who die by suicide have an existing mental illness or substance abuse problem at the time of their death.
Depression and depressive illness are mood disorders of the brain. It is caused by a chemical imbalance in the brain, a disruption of the brain’s balance. The two chemicals that are thought to be imbalanced are serotonin and norepinephrine. It is not a weakness, or a character problem. The important thing to note is that depression can be successfully treated.
The number of people who seek treatment for an episode of major depression in the U.S. is only 50% of the total that suffer from depression. According to the National Alliance of Mental Health, 80% to 90% of people who seek treatment for depression are treated successfully using therapy and/or medication.
People diagnosed with cancer have a nearly two-times a higher suicide rate than the general population. Being diagnosed with malignant mesothelioma is a life-altering event. There are treatment options, but the options need to include the whole person. Everyone needs to know that when things are looking hopeless or they are in unbearable physical or emotional pain there is help. The feelings are real, but there are treatments that work.
Not to be forgotten, are the families of patients who are being treated for mesothelioma and those who have lost loved ones from mesothelioma. For them, the pain of the loss coupled with other existing issues might make suicide seem like the only option to stop their pain. It is vital for all to realize there is help available and the help does work!
RESOURCES:
www.Save.org – Suicide Awareness Voices of Education
National Suicide Prevention Lifeline: 1-800-273-8255
Local Emergency Rooms can also help find you help.
Free Mesothelioma Patient & Treatment Guide
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