Author: Lisa Hyde-Barrett
Mesothelioma Nurse Explains The Need for a Caregiving Team
Having mesothelioma can be devastating and overwhelming. It makes your mind and your loved ones’ minds spin. There are a thousand questions you have, both answered and unanswered. I have answered many of these questions, but over the years I have asked my share of questions as well. One of the most important things I have learned from the patients and their families, is that a strong care team is vital to recovery.
I have watched each case, and I have noted what seems to work and what doesn’t always work. I would say that having a strong support system is definitely key to easing the stress of the mesothelioma patient. You should not only designate a primary caregiver, but you should also select other friends and family members who can serve as backup.
You may think that you and your significant other can handle what comes along with mesothelioma, but that is not always the case. Things can go wrong, or at least not work out exactly how you figured they would. It happens more times than not. If possible, you should have people around you who are committed to helping you with all of your loved one’s healthcare needs.
Who can be there for you at the drop of a hat if you need a ride to a chemotherapy appointment, or if you need to see a doctor when you are not feeling well? In the best possible situation, you could have three to four people who have a flexible schedule and are able to commit to being available with little notice.
Recently a middle-aged patient and his wife came in for treatment. Unfortunately, things have not gone according to plan. The patient’s stay in the hospital has been extended, and feels like forever to his wife. This unexpected development has left her frightened, alone, and far from any other support system that she has. Her reactions have taken a toll on her husband’s emotional well being, and have challenged the medical professions who are caring for him.
Her fear and frustration have become crippling to her. She is the primary support for her husband, but she has little, if any, support for herself.
It is ok to be the caregiver and to acknowledge the need of time for yourself. There are support staff within any large medical institution who can offer you support. They can be helpful and are great sounding boards, are non-judgmental and they can see your unique situation from a different perspective.
After a rough few days the wife agreed to call her sister to come and help her, taking all of the responsibility off her shoulders, and sharing it. A true sign that strength is in numbers!
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.
Turn to the Mesothelioma Community to Find Others Who Have Walked in Your Shoes
Sometimes the journey with mesothelioma can be an isolating experience, at these times it is important to reach out to the mesothelioma community. All of us have our own stories to share – patients, family members, healthcare providers, friends – we all have our own perspective, our own experiences. By sharing our experiences we help those who are struggling see a light in the tunnel.
This week, a patient who was contemplating a clinical trial but had not yet committed because he was worried about the side effects, was put in touch with someone who had been in the same trial. He talked to someone who had been where he was, and found out that the person is doing well. The participant was able to re-assure him that he had not suffered the side effects that he was worried about. Although there is no guarantee that he will be as lucky and not experience the side effects, he was still comforted by talking to someone who had walked before him.
The importance of belonging to a community- of belonging to something bigger than ourselves- is a basic human need. As humans, we need to belong. No patient chooses to belong to the mesothelioma community, but still he is comforted by it.
No man is an island entire of itself; every man is a piece of the continent, a part of the main… ~ John Donne
There are many ways to stay connected today. Social media is an important part of life. We can stay connected with each other through Facebook, Twitter, Instagram, and email. Some patients and caregivers have the opportunity to put a face to a name by meeting some of the leading researchers, and long term survivors, at an upcoming conference to be held on Sept. 26, Mesothelioma Awareness Day, in New York City.
The 2015 New York Regional Conference on Malignant Mesothelioma is a collaborative effort between the Mesothelioma Applied Research Foundation and Memorial Sloan Kettering Cancer Center. See The Meso Foundation for more information.
Research is how mesothelioma is going to be cured. Hearing about progress, from the researchers and hearing about the clinical trials that are ongoing also helps to strengthen the bond of community. Join the mesothelioma community and learn about the latest research, reach out and find some support, and make some new friends!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Collaboration Key to Breakthroughs in Mesothelioma Treatment
As we celebrate our freedom as a country, we also celebrate the freedom we have with our medical choices. Twenty years ago, if you were diagnosed with mesothelioma, you were told to go home and get your affairs in order. Before the internet was commonplace, before mesothelioma academic research programs were established, your choices were limited. Twenty years ago there were no dedicated mesothelioma centers; no Mesothelioma Applied Research Foundation.
Now, we live in a time where researchers have dedicated their professional lives to improving the treatment and to creating breakthroughs for a cure for mesothelioma. Some of the recent news of promising clinical trials and research is indicative of how far the war against mesothelioma has come.
Across the country and throughout the world there is collaboration among researchers, clinical trials, and professional organizations, working together to advance the cause. When new discoveries are revealed it is often through this collaboration, and through multi-centered clinical trials that they are able to bring potential new drugs to mesothelioma patients.
One example of international cooperation that hopefully will lead to lengthening and improving the lives of patients diagnosed with mesothelioma is the COMMAND study. The study is sponsored by Verastem, a clinical stage biopharmaceutical company. The focus of Verastem is on the discovery and development of drugs to treat cancer by the targeted killing of cancer stem cells.
It is thought that cancer stem cells are an underlying cause of tumor recurrence and metastasis. The study is using the drug VS-6063 with pleural mesothelioma patients as part of a clinical trial. The clinical trial is currently listed as a phase 2, randomized, double-blind placebo, controlled, multicenter study. It is available in 67 study locations across the world. For more information on this study see ClinicalTrials.gov.
Continued co-operation will hopefully lead to a cure and freedom worldwide from this devastating disease.
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.
Facing the Fear that Comes with a Mesothelioma Diagnosis
Fear is a unique emotion. It can be crippling or liberating. It can drive you to do better, or it can inhibit all progress. It can bring families together and unite them against a disease, or it can isolate patients with depression and anxiety. As a health care provider, I have seen this emotion take many forms.
According to researchers, there are three major cancer-related fears: the fear of death, the fear of recurrence, and the fear of stigma, which is the fear of being different, being treated differently and being thought of differently.
Knowing about fear, what triggers it in you, and why you react the way you do can help you deal with it. One mesothelioma patient described to me the sleepless nights she faces leading to her yearly check-up. Every possible scenario goes through her head, she is sure that she will be admitted to the hospital and suffer a long painful, debilitating death, far away from family and friends. When this does not happen she is able to put her fears aside until the next check up. What helps her get through this? She has started writing a journal and reading what she has written in the past. This has helped her realize she has been down this road before and come out okay on the other side.
I recently received a phone call from a patient’s wife, whose husband had a recurrence of his cancer. When her husband was diagnosed their world was, understandably, shattered. They had gone through his treatments and had reached a “new normal” in their lives. Although upset about the recurrence, they both felt they were coping better because of their past experiences from initial diagnosis through all the treatments.
It helps to become an expert on your health and mesothelioma to give you some control over a very frightening time that feels totally uncontrollable. Take the fear and learn about it, recognize it and acknowledge it.
In the past, mesothelioma was seen as a “death sentence.” Even with the progress and the encouraging results that many patients have had, the diagnosis and treatment can lead to changes at work, within your family, and in your daily routine. Not wanting your roles in your life to change can also contribute to fear – fear that you will be treated differently.
Mesothelioma, and any cancer, diagnosis is frightening and scary. Learning what triggers your fear and the basis of it can help you better deal with it. Reach out and get some professional help if needed to help you deal with all you are going through. You are not alone!
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.
Each Mesothelioma Patient’s Journey is Unique
The mesothelioma journey is as individualized as each patient’s tumor. Science has come to this revelation in the past decade regarding mesothelioma- everyone’s tumor is as individualized as their fingerprints. Just like each of us has a unique fingerprint, each patient’s journey with mesothelioma is also unique. Patients and loved ones go through different emotional stages at different times.
Dr. Elisabeth Kubler-Ross published a book in 1969, “On Death and Dying,” that started discussions on how people handle personal trauma and emotional upset. She identified five stages – denial, anger, bargaining, depression, acceptance. These are not rigid categories, and individual patterns vary as to when, if ever, a person facing a serious illness will go through each of the stages.
I recently saw a gentleman who was 60 years old who had just had a pleurectomy. During his hospitalization he was quiet, anxious and appeared frustrated overall with his diagnosis, staff, length of stay, and just about everything that he encountered. After he was discharged, I visited him at a temporary housing apartment, and I was pleasantly surprised – he welcomed me into his place and acknowledged that he remembered me. I was so happy to see him and to see how well he was progressing.
His journey with mesothelioma had taken a turn, and he had moved on to another stage of healing. He had a bounce in his step, and his attitude was of gratuity and hope. He expressed that he too was surprised at how well he felt, and how far he had come from the dark days in the hospital. He was knowledgeable about his medications, fluid restriction, and dietary restrictions. He spoke about his length of stay in Boston and was completely okay with whatever he had to do. He was feeling better and he was back in a good place psychologically. I could not have imagined that this content, happy man was the same man who I encountered in the hospital.
Like researchers have realized that every mesothelioma tumor is individual and not like any other, the emotional journey is also an individual, unique, journey. As a health care worker, it is my honor to accompany patients and their families on the journey, during rough times as well as calm times.
Know more about Mesothelioma and how you can deal with it.
Free Mesothelioma Patient & Treatment Guide
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It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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