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Author: Lisa Hyde-Barrett

Grief and Guilt After Losing Loved One - Mesothelioma Help

Mesothelioma Nurses are Vigilant of Patients and Their Families

When people are diagnosed with cancer, and specifically, mesothelioma, many emotions come to the surface. Initially, a mesothelioma patient might have many decisions to make regarding treatment, chemotherapy, surgery, and/or radiation. Where to start and continue treatment can be a source of stress for some patients and families. While trying to maintain the best physical health, sometimes the patient’s and the family’s mental health can take a back seat.

There are more than three million cases per year of depression in the U.S. It is estimated that 25 percent of cancer victims will suffer from depression. One definition of depression is the persistent feeling of sadness and loss of interest in things that you once enjoyed. Some of the signs and symptoms to help recognize depression include: sadness, fatigue, abandoning or losing interest in hobbies or other pleasurable pastimes. Other signs include social withdrawal and isolation, weight loss or loss of appetite, sleep disturbances, loss of self-worth, increased use of alcohol or other drugs, fixation on death through suicidal thoughts or attempts.

Recently, we took care of a mesothelioma patient whose course was not smooth. He had a prolonged hospitalization, but he was eventually discharged after one month in the hospital.  Accompanying him was his wife, who suffered from depression before her husband’s diagnosis.

With all the planning and travel necessary to get to our mesothelioma center, she focused on her husband and his needs, but she only brought a limited supply of her anti-depressants.  As this stressful time went on, it was apparent that she was alone, frightened, and without her medication.

Her behavior became cause for concern for all of us. She was isolating herself in her hotel room, was often angry at the staff for her husband’s lack of progress, stayed in bed, and visited erratically. It was apparent that she needed help. With her cooperation and consent, her doctor was notified and arrangements were made to get her medication. Her husband was eventually discharged, and she was again able to be a loving, supportive presence to him.

Mesothelioma patients come with families, and they are a very important part of the team. In order to successfully treat the patient, a functional, supportive family is critical. We are all working towards the same goal, and sometimes we may need a little help along the way.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].

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Competitiveness Can Benefit Mesothelioma Patients

What motivates someone to push himself through his recovery? I think we all have a competitive edge to us for something. It could be to be the best salesman, homemaker, parent, or to be the best at our job, in our home or any other area we want to improve. For some, competition is all encompassing, for others it is a healthy motivator.

I took care of a patient the other day who was observing another patient’s recovery. He said, “Oh, he looks better than I do when he’s walking.” I explained the other patient had a different set of circumstances, and that no two mesothelioma patients are alike. He nodded in agreement. Knowing what a competitive person he was, I knew he was noting this and thinking how he was going to improve. His verbalizing that the other patient looked better walking was actually motivating him to push himself.

Reflecting on this, it reminded me of how fortunate we are in the U.S. to have dedicated mesothelioma centers. Now, as there is more collaboration between the researchers, and various centers than in the past we can ask, “What motivates these researchers?”

I think it is more about them wanting to do their best. Without competition, what would motivate these researchers and future researchers to dedicate their lives to a disease that many others have thrown their hands up at? These scientists, doctors, nurses and others would not keep working to improve the outcome for mesothelioma patients, if they were satisfied with the status quo. They would be satisfied like many other medical professionals before them, saying there is nothing we can do.

As for my patient, the next time he walks, he may walk farther just because he saw somebody else do the same. When the  competitor in us helps us achieve more, we should embrace it.  Sometimes we need to motivate ourselves by pushing ourselves so we can grow and get more information, research, ideas, or maybe just walk a few more steps in after surgery.

Take a few more deep breaths, and count our blessings that we are able to do it.

Nurse Sees Diversions As A Good Way to Cope With Mesothelioma

When I decide to write a blog it is usually based on an interaction that I have had, or something I’ve seen that I thought was different, or just something that will help others on their journey with mesothelioma.

I recently took care of someone who was in recovery after surgery for his mesotheliomaDespite the size of his tumor and length of his surgery, he was doing remarkably well. He had a supportive family who were in and out throughout the shift I spent with him. But the one thing I think that surprised me, was that he was involved with starting up a business. This business had been a thought, a dream, before he got sick – but now it was becoming a reality. He and his wife had decided to stick with the plan and go for it. 

As I cared for him, it was clear that his health was his and his wife’s  priority, but this business gave them something else to think about. It provided a healthy diversion during which he was not the patient and she was not the caregiver. It is important to focus on your health, but it is also good to have a diversion.

Diversions or hobbies can help you pass the time during recovery, and keep you from worrying about every single pain, and decision that is being made. Not everyone is going to start  a business, but having seen firsthand the important role it was playing in this patient’s successful recovery, I started thinking about other things that could help other patients.

Everyone’s lives are different and the options are just as different. Maybe a wedding is coming up in the family, a new baby, or just the desire to learn something new – like social media. You could tell the story of your journey, your life before mesothelioma. People are very interested in hearing how people are dealing with their illness and recovery. No one better than you can tell what is like. If you are not into that, possibly you can find a class that interests you. Something low key, like knitting, or an online class about something you have always been interested in, maybe even take the time to learn a foreign language.

Diversions are not about passing the time.  An unknown author once said, “Recreation’s purpose is not to kill time, but to make time live; not to keep people occupied, but to keep them refreshed; not to offer an escape from life, but to provide a discovery of life.”  Everyone’s journey is unique – as are their coping skills.

Mesothelioma might offer you the chance to do something you have always dreamed of doing.

Mesothelioma Nurse Shares Her Passion for Her Job

Throughout the world there are nurses on the frontline of health care doing many jobs that many have not ever considered doing. There are 3.4 million Registered Nurses in the United States – one in a hundred people in the U.S. are nurses. For 13 years, RNs have been named number one as the most respected profession. Nurses are women and men, we come in all sizes, ages, colors, nationalities. We work long hours doing things that are far from glamorous.

I have been a nurse for many, many years, and often I am asked, “What do nurses do?” When my children were growing up, it was a question they would ask. When they were young and I was working nights, I would often bring home donuts, so they thought I had gone out early to get the donuts. As they grew up, they stopped in one day when I was working in the SICU, I happened to be assigned to the first room, “Ah,” my son said, “you are like the Walmart greeter!”

A couple of years ago my husband was critically ill with what turned out to be a tick-borne disease called anaplasma. As one of my daughters and I watched, his nurse in the Medical Intensive Care Unit seamlessly worked on him, hung fluids, suctioned him, monitored his vital signs, titrated life saving medications, and talked to us, all the time as she prepared him for a CAT scan. When we left that evening, my daughter, a successful computer software professional, turned to me and said, “I could never be a nurse, she never stopped working for the last four hours, she was toiling over someone she doesn’t even know. She never once complained or took a break. I am exhausted from just watching her.”

This month, Kelley Johnson, RN, a contestant in the Miss America pageant, expressed her passion for nursing in the talent portion of the contest. It was a poignant, memorable, from-the-heart monologue. She was expressing what every nurse feels: the satisfaction of connecting, caring, touching another person.

Members of the TV show The View, commented on her “costume,” her “MD’S stethoscope”, and found the monologue, “hilarious,” “she was reading her e-mails.” After the “apology”  was issued, another cast member suggested that the nurses “listen more carefully.”

Message given and received.  I, and I suspect many other nurses, will not be watching The View again, but I will be buying Eggland’s Best eggs and Johnson & Johnson products, as they have both pulled their advertisement support of the show.

When the anger and disappointment that this incident has created passes, hopefully more people will know what nurses do, and what a great job it is for those lucky enough to be blessed with the passion for it.

In a society that often confuses success with the amount of money earned, or by becoming a celebrity for one thing or another, or by expressing our opinions on a talk show, we are reminded that the Kelley Johnson’s of the younger generation are our bright lights.

Maya Angelou said, “Success is liking yourself, liking what you do, and liking how you do it.” Kelley Johnson is a success and a reminder to us all – nurses are not on TV, are not famous, but most of America respects us.

And that is the take-away in this controversy – and the panelists on The View now realize nurses are respected.

National Mesothelioma Awareness

Mesothelioma Awareness Day Draws Mesothelioma Community Closer Together

For many people, Labor Day marks the end of summer, although the official end is not until September 21st. Life returns to its hectic pace with school, work, appointments, etc. For the mesothelioma community, however, September is the month to recognize National Mesothelioma Awareness Day.  This year it is Saturday, September 26th.

This past week, I had the good fortune of meeting a patient who had been diagnosed with Stage 4 lung cancer – 9 ½ years ago. When she was diagnosed, she was told that she had six months to live. She was a non-smoker and could not understand why this was happening to her. She was in shock. She walked out of the appointment with her doctor and said that was not going to happen. She never went back to that doctor. Instead, she referred herself to a large teaching hospital that specializes in oncology.

When she told her story to her new oncologist, he pointed up to the sky to a higher power, and to her head, indicating the power of positive thinking, and said, “It is up to you – no one has a crystal ball – let’s see what happens.”

Her oncologist pointed her to clinical trials and offered a variety of treatments. And she has benefitted greatly from many treatments and medications that are now available as the result of  successful clinical trials. It has not been easy, complications have left her with other medical problems, she undergoes dialysis twice a week, frequent blood tests, frequent doctor’s appointments. But, she has lived to witness many life events and family milestones that she never thought she would – graduations, weddings, grandchildren.

One thing that she does every year, at the request of her oncologist, is to speak to researchers- she puts a face to all their work. Her successful fight, because of their research, long ago put six months in the rear view mirror.

Although this patient has lung cancer, we have mesothelioma survivors who continue to battle the disease and are living well after their six month sentence has been in their rear view mirror. Like my recent patient, they sought out clinical trials, became involved in learning all they could about their disease, and kept living. Mesothelioma does not define them.

As I was thinking of this patient, it occurred to me that this is why Mesothelioma Awareness Day is so important. Having a community to support mesothelioma patients and family members through this journey with mesothelioma, sharing the progress being made with research, celebrating the success, and acknowledging the disappointments, sharing the stories of survival are all some of the purposes of the day.

On September 26th, remember all who continue to battle this aggressive cancer, all who have lost their battle, and their families, as we all pray for progress to a cure.

If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].

Know more about Mesothelioma and how you can deal with it.

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