Author: Lisa Hyde-Barrett
Morning Reflections at Mesothelioma Clinic
The other day I paused to reflect as I saw patients and families in various stages along their journey with mesothelioma. I am fortunate enough to follow up with patients on an outpatient basis, and it is so rewarding to see patients progress back to their lives.
There is a young girl with mesothelioma who had treatment a year ago who is now back in school. Her course has been long and complicated, but here she was proudly talking about her job and classes. Most importantly she had started to regain some of the weight she had lost.
There is a gentleman who I had seen in December who also has had his fair share of bumps in the road. I actually had to look twice to know that this was the same man. He walked down the hall with his chest out and a sparkle in his eye. He was facing radiation and he felt he was mentally and physically ready for it. The next patient is a man who had surgery three months ago and is doing well. He had put on a little weight, and still had some pain, but he was home and his life was manageable.
One of the patient‘s caregivers, who is a cancer survivor as well, was speaking of the importance of perspective. After a cancer diagnosis, she said every ache and pain makes you wonder if it is cancer related. She spoke about the fine line between vigilance and just driving yourself crazy with the possibilities. We talked about how negative thoughts can sneak in. Her solution to that is to get busy and live in the moment. We actually only have this very moment now!
To top off this special morning, a physician who I was speaking with was also checking his e-mail, and he let out a resounding “YES!!!” A smile filled his face as he read that he had just been notified about approval for a trial to which he had submitted. His delight in hearing the news was contagious.
This is what is special about mesothelioma patients and their team. Hope for continued progress for a disease that was once a death sentence, by people who are passionate about helping to improve the quality of life for others.
Mesothelioma Patients Need Time and a Listening Ear
My last blog was about a mesothelioma patient having a slow recovery and questioning if having treatment was a mistake. She had a course that was riddled with complications and it was hard for her to see any end in sight. When I saw her, she was clearly not feeling well and was discouraged. I am happy to report now that with some medication adjustments and time she has turned the corner. She is feeling better, has more energy and is on her way home. Was it changing her medication, time or a combination of both?
Reflecting on this patient and her experience two things come to mind: time and listening. We cannot control an individual’s recovery. We cannot control an individual’s response to treatment or the time it takes to recover. As everyone’s journey is different, it is hard not to compare progress, especially when everyone else seems to be doing better. Sometimes, though, it just takes time: time for the medicine to work, time for the incisions to heal, time for the pain to ease.
Another thing that people who are recovering from treatment need, but is often overlooked, is for someone to listen to them. When patients are not feeling well, people may tell them how much better they look and how well they are doing, when in fact, they just want to say, “Today I don’t feel well, and I am not sure I ever will.”
Another patient told me that according to his family and friends he has never looked better since being diagnosed with mesothelioma. He knew their intentions were good, but he also knew he was not feeling well, despite how he looked. People are well intentioned, but sometimes instead of being the cheerleader, just listen and hope tomorrow will be better for your loved one.
Time is a variable in the recovery process, and everyone’s recovery is different, but never underestimate the power of listening.
As Leo Buscaglia said, “Too often we underestimate the power of touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
Recovery from Treatment Takes Times and Patience
When a person makes decisions regarding their health care it is usually after carefully weighing their options. They listen to the medical advice, conduct research, discuss it with their loved ones and listen to their inner voice. After making these decisions, it is difficult if the chosen path does not work out the way you had hoped or wanted.
This week, I met with a mesothelioma patient who was having a rough time. She is having a difficult recovery. After undergoing her chosen treatment, she has had multiple readmissions and visits to the clinic and emergency room. At the beginning of her journey, she was told the statistics regarding mesothelioma and interpreted it to mean with no treatment she would live just six months. However, by choosing some treatment, she was hoping to increase the chance at more quality time.
Her journey has not been easy. She is tired and wondering when she is going to feel better. As she continued she spoke about her thoughts in the beginning of not having treatment — she did entertain the option. She is well supported, but it seems no end to the fight of everyday life. She was not that symptomatic prior to treatment, occasionally she had some shortness of breath, but now she wonders aloud if doing nothing would have been the better choice.
Not many recoveries are without issues. Hopefully this patient is in the darkest part of her journey and soon the road will be more kind to her.
I think there are moments in all of our lives when we question our choices. Experience with mesothelioma patients has taught me that sometimes recovery takes more time, along with more sleep, getting outside and moving, and slowly patients find themselves starting to feel better.
When mesothelioma patients physically start feeling better, their outlook also starts improving. Every recovery is unique. People react differently to treatment and while some issues can be addressed and fixed, others simply take time. Give yourself time and look at each minor improvement as a victory.
Patient Engagement As Best Mesothelioma Care
As we enjoy Spring, we realize how fortunate we are to be living in such an exciting time for the treatment of mesothelioma. Progress is being made, not fast enough for everyone, but there is progress, nonetheless. As the plants that had been dormant for months come into bloom after a long winter, it is hard not to feel hopeful.
Progress towards a cure for mesothelioma continues, and for some, their cancer has become a chronic disease. Chronic diseases are managed by the patient 95-99% of the time. On a day-to-day basis, the individual is in charge of his or her care decisions that have a tremendous impact on their health outcomes, treatment costs, and quality of life. By the year 2020 not only will chronic conditions be the leading cause of disability throughout the world, but they will also be the most expensive to manage around the world. It is a tribute to the dedication of scientists, and researchers, and brave patients, that mesothelioma, once a cancer with no dedicated treatments options, has now progressed to a chronic condition for some.
The health care system is fragmented, and despite the efforts of many good and caring people, it is difficult to navigate the layers of medical providers and medical regulations. It is very important that the mesothelioma patient and family become engaged in the process. Patient engagement is vital as mesothelioma becomes part of your life, whether chronically or acutely. Let your team know what is important to you, what you want, and especially what you do not want, as far as treatment is concerned.
When managing mesothelioma, if you need someone to talk with, reach out. I have found that patients who live with mesothelioma as a chronic condition often have found friendship and support with other patients and their caregivers. They support each other throughout their journey and form lifelong bonds with each other. Often, patients who I have taken care of over various parts of their journey, be it at the beginning or at any other step in their journey, have important information to share. Progress continues as the research continues and the brave mesothelioma patients continue to battle through.
Enjoy the Spring, renew the spirit, look forward to the future, but remember to enjoy today!
Meditation as One Way to Cope With the Stress of the Disease
If you or a family member has been diagnosed with malignant mesothelioma or any cancer, most people would advise you to go to a center where the medical team treats a lot of patients with your type of cancer. While deciding on how and where to get treatment, don’t forget to take into account your “whole” person.
There are many options available to help patients cope with the stressful diagnosis of cancer. The official term used to describe therapies and botanicals that are used along with traditional medical therapy is ‘Complementary and Alternative medicine (CAM).’ According to the National Cancer Institute’s web site, a 2007 National Health Interview Survey reports about four out of ten adults use CAM therapy, with the most commonly used treatments being natural products and deep breathing exercises. In 2017, it would seem that this number would have risen significantly.
While being treated for mesothelioma it is important to take care of yourself both physically and mentally. One of the ways could be meditating to help turn down the noise in your head.
According to Psychology Today, meditation is the practice of turning your attention to a single point of reference. It can involve focusing on the breath, on bodily sensations, or on a word or phrase known as a mantra. In other words, meditation means turning your attention away from distracting thoughts and focusing on the present moment.
Meditation can be done in most settings. There are many types of meditation, but they have common elements to them. Two types of meditation are concentrative meditation and mindful meditation. Concentrative meditation teaches individuals to focus on a single image, sound or mantra, or even their own breathing. In mindful meditation, the person does not focus attention on a single thing but becomes more aware of any and all thoughts, feelings, sounds or images that may pass through your mind. The point is to let them pass through and not dwell on them.
The different types of meditation have four elements a person meditating should seek: a quiet place with as few distractions as possible; a comfortable position; something to focus on, possibly an object, a special word; and an open mind- letting things go through your mind and letting them go.
Whatever therapy you decide works for you, learn about it and give it a try. You never know what alternative therapy will work for you.
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