Nurse Encourages Mesothelioma Families to Advocate for Their Loved Ones

• Lisa Hyde-Barrett
• Nurse's Corner

I have taken care of mesothelioma patients for many years. To be honest, some patient’s stories stay with me more than others. I recently cared for this woman who had a high school degree and had a pretty simple life. I mean she was not consumed like the average American about having material things and constantly wanting more. We will call her Sally. Sally accepted life on life’s terms.

Unfortunately, she was diagnosed with mesothelioma with a routine chest X-ray. She was not symptomatic and was able to work, but she had become one of the many victims of this dreaded disease. As I cared for her she had been in the hospital for one month after being discharged for a few days to rehab. Her surgery had not gone along as planned, and basically her cancer was unresectable, or in other words, her cancer was inoperable. Sally was short of breath and it was difficult for her to do much. She also had a very poor appetite.

Her family loved her very much, but like her, they all just accepted her symptoms as normal. I felt like there was no one person who was advocating for her. We all know how important nutrition is. Her wound was poorly healed, secondary to lack of nutrition and her disease progress. I felt like I needed to speak for Sally and to help her overcome some of these issues. I don’t think she knew the importance of nutrition, and I felt that giving her some basic information could make a difference.

Although she refused a meal tray, I offered her a frappe and encouraged her to drink it. I even held the cup to her lips so it would be easy for her to drink. Sure enough within a few hours she had drank the high calorie frappe. I consulted a nutritionist to get her input as well. I believed that Sally’s wound could heal, but she would need some dressing changes and careful observation. We called the thoracic surgeon so he could give his input. I guess when I think of Sally, I feel like someone has to watch and advocate for her and for all mesothelioma patients.

The definition of advocate is to speak, plead or argue in favor of someone. There are people who are available to be advocates. Advocates can sometimes be a significant other, family or friend. The nurse can be the advocate while a person is in the hospital, but once they leave they need someone to travel the road with them.  It is difficult to think of everything someone needs during a battle with mesothelioma, but having someone fighting with the patient and for the patient can help keep the patient’s recovery progressing.

If you don’t have a family member who can advocate for you, consider asking your primary care physician, friend, legal team or your mesothelioma medical team for support or suggestions.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.