Category: Nurse’s Corner
Nurses and Mesothelioma Patients Benefit Equally from a Friendly Ear
This past week one of my co-workers, an RN who I have worked with for decades, lost a young family member to cancer. As a community we grieve for the loss of this young, newly-married man. His journey with cancer was swift, debilitating, and heart-wrenching to hear about. Through my co-worker, we learned what an ordeal it had been for him, and for everyone in his family. After he died she texted me with the news, and thanked me for all the support. This tragedy made me reflect on how important it is to listen more. We all have different life experiences and we can all offer something to someone going through a crisis – a suggestion, a story, or maybe just an ear.
Throughout life, our relationships note the important times and the mundane times of our life’s journey. Relationships are what keep our lives rich. Although patients and their families living with mesothelioma did not elect to go on the cancer journey, one of the unexpected side effects is that it can strengthen their relationships with each other.
As a nurse, I have been fortunate to have many coworkers with whom I have worked with for decades. We have known of each other’s relatives – husbands, parents, children – most we have never met, but we know a lot about them. We have been through life’s happy experiences including weddings, births, anniversaries, and birthdays. We have supported each other through personal hard times like the death of a parent, a divorce, illnesses and accidents.
We remember patients who have been gone for years, we remember funny stories and very sad stories. We support each other. We are a community of people bound by our jobs and a genuine caring for each other. Like the mesothelioma community we come from all different backgrounds, cultures, and have varied personalities and life experiences. Also, like the mesothelioma community, we might not know the lasting effect kindness and listening can have on a person dealing with a crisis.
As you or your loved one continue on this journey with mesothelioma, remember you do not have to go it alone. Reach out for support. As the Beatle’s song goes, “I get by with a little help from my friends.”
Know more about Mesothelioma and how you can deal with it.
Patient’s Mesothelioma Journey is Different From Each Other
For patients diagnosed with mesothelioma, “journey” is the word used often to refer to the different steps of the patient’s condition. According to the Oxford Dictionary, journey is defined as “An act of traveling from one place to another,” or “A long and difficult process of personal change and development.” Both of these definitions can be applied at different points for mesothelioma patients and their families. No one knows what the journey will look like, or how long it will be, as each patient‘s experience is different.
This past week, our medical team saw patients and families who were at different points on their journey. We saw a gentleman who had surgery 25 months ago. He came for a follow-up and stopped to see us: he looked well. It was shocking to see him walk in with his family and with a smile on his face. The last time I saw him he was fragile and weak, and his personality had dulled from his illness. He was subsequently discharged to a rehab facility, but he did not flourish and his family decided to take him home. One of the healthcare workers asked him if he was enjoying life now, and he said, “Yes, but it is different now.”
He doesn’t work so much anymore. He has learned to enjoy different things that make him happy, like taking his grandchildren out for ice cream cones. He is being maintained on chemotherapy which he said is okay, and it is just another thing he has learned to live with. His only complaint is back pain from his surgical site where they removed his lung. His family was with him and his grown children have also begun to move on with life. For example, his daughter who was his primary caregiver, has taken a new job, relocated, and is enjoying her life.
Two years ago he or his family or his healthcare team could not have foreseen that he would have recuperated enough to smile and enjoy life. On the flip side, I spoke with someone on the phone who is frustrated with this disease and how it is stripping her loved one of his life. A few short months ago he was moving around fine, but now he needs a lot of assistance with everyday living. His wife is trying to reassure him and help him enjoy his life, but he is so limited from the physical weight of the disease. Is this a progression of his disease or is it another bump in his journey?
Journey is a great word to describe the mesothelioma experience. The journey can be “a long and winding road,” with unexpected turns and twists, that no one can predict. The “long and difficult process of personal change and development” can apply to life with mesothelioma, a journey no one knew they were going to make.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
ADAO’s Mission Impresses Mesothelioma Nurse
The Asbestos Disease Awareness Organization was co-founded by Linda Reinstein and Doug Larkin. This organization was founded by the courageous duo who watched their loved ones pass away from the terrible illness caused by asbestos: mesothelioma. Linda’s husband was diagnosed in 2003. He endured chemotherapy and had to undergo multiple surgeries where his left lung, pericardium and diaphragm were removed, and his diaphragm was replaced with goretex. Sadly, he passed away in 2006 leaving behind his wife and daughter. Doug Larkin also lost a family member to this dreaded disease, and now he works tirelessly to serve his memory.
Together, the two have taken their grief and turned it into a positive example of helping the mesothelioma community and in fighting the world of asbestos. They are more than just a couple of individuals trying to prevent the spread of asbestos: they know what it feels like to lose a loved one to this disease and they have seen it happen to too many other families. Linda and Doug have a mission to ban asbestos globally. The ADAO started small, but today it is a 501c nonprofit, and is the largest U.S.- based independent asbestos victims organization.
The vision of ADAO is to eliminate asbestos-related diseases, like mesothelioma. ADAO works with public health organizations, healthcare workers, and many others to help ban asbestos. ADAO has three initiatives: education, advocacy and community.
You can find Linda at most mesothelioma conferences reaching out to help others who have been affected by the terminal cancer and other asbestos-related diseases. This month, she led the 12th Annual International Asbestos Awareness and Prevention Conference in Washington DC.
Since 2005, the annual conference has brought over 300 speakers ranging from victims, lawmakers, and experts to share their information. Gathering so many experts can only bring more education, awareness and long-lasting relationships.
Thank you for all who continue to work hard at fighting this dreaded disease and at educating the world about the harm asbestos is causing in our communities.
By increasing awareness of asbestos, the hope is that other people’s loved ones will not suffer as theirs did. For more information about the good work from this organization, visit the Asbestos Disease Awareness Organization website.
Constipation Should Be Addressed Quickly Says Mesothelioma Nurse
Understanding what to expect from mesothelioma treatment can be confusing and difficult to understand. Patients and family members seek out the latest cutting-edge research and clinical trials in which to participate with the goal to increase quality time with their loved ones. But, regardless of the selected treatment, care comes with its own set of issues. Some of the common issues that mesothelioma patients face are pain, shortness of breath, fluid status issues, and depression.
One of the problems that occurs all too frequently for mesothelioma patients, but no one wants to talk about, is constipation. Constipation is emotionally upsetting and embarrassing to discuss. But, this common problem that can be daunting to patients and families dealing with mesothelioma treatment is vital to recognize and immediately address.
According to the National Institutes of Health and the National Digestive Diseases Information Clearinghouse, the definition of constipation is a “condition in which a person has fewer than three bowel movements a week or has bowel movements with stools that are hard, dry, and small, making them painful or difficult to pass.” Everyone is different, and for some people, not going once a day may make them think they are constipated.
This condition is very common with 15% of the U.S. population being affected, and is very common post-surgery. The most common causes for constipation are a diet low in fiber; a lack of exercise; medications, especially pain medications; and changes in daily routine. Post-surgery pleural mesothelioma patients, or any post-surgery patients, can have all of these factors.
Treatment for constipation can include a change in diet and exercise habits, or change of medication. When taking pain medication, it is very important to be aware of the possibility of constipation. Laxatives are usually ordered by your physician and should be taken along with the pain medications. Common laxatives are available by mouth and come in many different forms, including pills, liquid, and powder.
Constipation might seem like a minor problem, but left unrecognized and untreated, serious complications can arise. As an example, a patient I called recently was constipated with a distended abdomen and he felt miserable. He had to be readmitted to the hospital for care. He and his family had been so focused on pain and fluid restriction that constipation snuck up on them.
Mesothelioma patients and families need to realize how this common problem is one that they should be aware of and discuss with their mesothelioma team. When dealing with a complicated disease like mesothelioma it is important to remember the basics and the role they play in a successful recovery.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Mesothelioma Patients May Question Their Mortality
He was in the ICU from a complication after his surgery. His journey with mesothelioma had begun just three months earlier. He had presented to his local doctor with what he thought was pneumonia- it wasn’t. Previously healthy, he was diagnosed with epithelioid mesothelioma. He and his family had researched mesothelioma, came to an academic center, had surgery. Things had been going well and then he had an unexpected complication – treatable – but unexpected.
Physically he was recovering, mentally he was devastated. He knew about the possibilities of complications since they had been explained in depth to him and he had accepted the risks of the surgery. Before the complication he was beginning to see that he and his family could cope with and live with mesothelioma. He was beginning to feel that he had regained control of his life. Now, he lies in the bed wanting to know if death was imminent.
The psychological toll that the complication had taken on him was worse than the physical setback.
As the nurse, I know that he will get better from the complication physically, I can point out all the evidence that it will happen, he is ex-tubated, his vital signs are good, he is not on oxygen, he will soon be transferred to the step down unit. All positive signs that he is on the mend.
What about his mental state? He had done everything that was asked of him after surgery, and had landed back in the I.C.U- what does that say about his prognosis? Once diagnosed with cancer, and when having treatment, finishing treatment, whether it be surgery, chemo, radiation, or clinical trial, in the back of every patient’s mind is the question, “When will I have a recurrence?” Every patient needs to process and deal with this possibility.
The way to help is to listen and support the patient. Know that everyone responds to complications differently. Point out the positives in the patient’s situation, for example, physically you are better. Acknowledge that it takes time to adjust to a diagnosis of cancer, and that there are ramifications. A cheery pep talk might not be appropriate, but simply pointing to the facts might help. Like every mesothelioma tumor is different, every patient’s reaction is different. It is important to accept that and adjust your approach.
I am happy to report that the mesothelioma patient in ICU did get physically and mentally better. He is adjusting – time, family love, and support can be the best medicine!
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