Category: Nurse’s Corner
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.
Nurses Inspired by Mesothelioma Families’ Strength, Love
Every year at the beginning of June, the International Mesothelioma Program at Brigham and Women’s Hospital holds a memorial service to honor the patients and families who have lost loved ones to mesothelioma. Every year, I leave more in awe of the all-encompassing feelings of love that transcends through the families for their lost loved ones.
The loved ones of the mesothelioma victims share their journey with the illness, and the loss of their loved one, in a way that we all relate to: a personal, intimate way. The staff that knows the patient and family during the snapshot in time they were being diagnosed and treated for mesothelioma, sees a different side of the patients. The man who loved to celebrate anything with a cake and candles, the woman who talked to strangers and befriended them, the romantic side of a man who appeared rough.
How do the families do it? Return and share their painful stories and relive a time and place that holds such painful memories? We look in awe at the survivors and secretly think – no way could I handle what they have handled with such grace and dignity.
You would think that this would be a very sad day. Although there is sadness, there is also hope. Hope that mesothelioma patients in the future can have a long life with the disease; that advances in science will lead to a cure. A realization that hope cannot be the plan, it comes with advances in diagnosis and treatment and research. Progress is being made, although it seems slow, it is in the right direction.
There is also recommitment to work harder, study harder, think outside the conventional way that we have been thinking about mesothelioma. There are now faces and families for the researchers to make that human connection, like the 70 year old man with epithelioid mesothelioma.
We empathize with the families for sharing their stories, we are touched by their generosity of spirit, we pray for them, and we thank them for coming and re-energizing us.
The survivors’ lives are captured in words from a Bono song, “There is no end to grief……….and there is no end to love.”
Respect and Kindness Lessen the Discomfort of Mesothelioma Diagnosis
Certain subjects can make us uncomfortable. Hearing of someone diagnosed with cancer is one of them. What do you say? Do you ask questions? Do you acknowledge the diagnosis? Coming up with the answers can be challenging, especially when the diagnosis is mesothelioma. Unlike some cancer patients who lose their hair during treatments, often, the mesothelioma patient looks the same as always.
Expressing concern might not seem like enough, but often it is the kindness that is remembered. Sometimes it is not the words that help a patient, it is just being present and listening to what the patient is going through that is helpful. Although you might want to reassure the patient, saying something like “everything will be ok, because my neighbor had the same cancer and is fine, ” resist the impulse to minimize what the patient is going through. Although your intentions are good, the fact is that everyone’s cancer is different, and your neighbor might have a different type of the same cancer which has a totally different treatment plan. Listen more to what the patient is going through.
I heard this week about a patient who had gone through chemotherapy and had lost her hair. Not wanting to be intrusive, but wanting to express concern, an acquaintance said, “ Whatever you are battling it looks like you are winning. Keep it up!” This approach expressed concern, acknowledged that something was going on, but did not intrude on the patient’s space. It left it up to the patient to share more or not. It struck me as a very kind, positive way to approach anyone who has cancer.
Depending on your relationship, humor can also help. Another patient was telling some good friends that when she saw them next she would not have hair, as she was starting chemotherapy. One friend said to her, “You are long overdue for a new hair style anyway.” The patient repeated the statement, always with a smile, many times to ease others’ discomfort with her temporary hairlessness.
There is no way that is right or wrong. In the words of Maya Angelou, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you make them feel.”
Acknowledge with respect and kindness, and you will soon forget that you were not comfortable talking about cancer.
Nurse Helps Define Recovery for Mesothelioma Patients
When diagnosed with mesothelioma and undergoing treatment, patients often ask, “Is this the best I am ever going to feel?” Or they want to know, “Will I ever recover and feel good again?” Let’s look at what recovery looks like for mesothelioma patients.
The definition of recovery is: “a return to a normal state of health, mind or strength.” But, how long does it take to recover from mesothelioma? Recovery can be different for everyone, and it depends on the type of treatment the patients receive for their mesothelioma. Although that may sound like a non-answer, it comes down to the simple fact that everyone reacts differently to treatment. When it comes to managing mesothelioma, all patients are faced with a new reality; a new normal.
Unfortunately, there is no cut and dry answer for length of recovery. Some people say they feel better immediately, especially in regards to their breathing. When the benefits of chemotherapy and radiation kick in, people say their breathing is different. Although that is good, some patients are impacted by the side effects and may be plagued by fatigue.
Often times, patients feel better just starting to do something to battle the disease. Mentally, they feel stronger and more powerful because they are actively doing something. While surgery is a strong step in fighting the cancer, it is rarely a quick recovery. It takes time, sometimes a long time. But, the question you could ask yourself is: “Am I better at some point during my recovery than I was before I started treatment?”
I think it is a good idea to jot down any improvements you see or feel on a weekly basis, and reflect on the positive changes that you may slowly be realizing. Writing it down helps you focus on the positive. It may be baby steps, but it is progress.
Recently, I was asked about recovery by a 65 year old man who had undergone pleurectomy surgery just three weeks before, and his improvements were slow. He had complications, and needed time to regain his strength. The days can be long when you are recovering away from home, and you don’t know what the future holds. I am happy to report that after one more week at rehab, he went home to recuperate and was feeling much better. “Normal” is how he described how he felt.
Sometimes you just need to keep in mind that you will get better, and things will get back to normal for you. It will be a new normal, and that can take some getting used to, but each victory is a step in the right direction!
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