Author: Lisa Hyde-Barrett
The Waiting Doesn’t Have to be the Hardest Part
Waiting for something to happen, whether you anticipate good news or bad, can be excruciating. Children waiting for the holiday feel every moment as if it is forever. They are anticipating a happy event. On the other side of that, for a mesothelioma patient waiting for lab results, the results of which will determine his or her course of treatment and next steps, the waiting is also excruciating.
People wait in our health care system for everything. For appointments, for doctors, nurses, phlebotomists, every aspect of care can involve a wait. A 2014 study found the average wait time in a doctor’s office is 20:16 minutes and is only getting longer.
What can you do to pass the time when waiting for an appointment for yourself or a loved one with mesothelioma? In an article by Lynne Eldridge, M.D., titled “Waiting Room Survival Kit- Activities to Combat Boredom,” she suggests instead of focusing on “losing” time, view this time as an opportunity to do something you enjoy- something you wouldn’t ordinarily do. Read a book that you have not had time to, talk with another patient who is also waiting and wants to talk. Bring a friend or family member with you and catch up. In our busy lives, when have you had the time to talk to someone without interruptions for 20 minutes?
Some of her other suggestions include writing a letter, often we have been meaning to do it but don’t have time. Balance your checkbook, work on your taxes, take a nap, make a to-do list, learn more about your portable device features.
Over the years there have been many lasting relationships formed in the waiting room. Patients and families waiting for the doctor in the mesothelioma clinic all have something in common: their journey with mesothelioma. Although I think the average waiting time in mesothelioma clinics is longer than 20 minutes, we have seen bonds that last a lifetime between patients and families.
However long the wait, whatever the reason, please know on the other end, if you are a mesothelioma patient, the team will do their best for you. Save your energy for positive thoughts to fight mesothelioma, possibly with a new supporter you met in the waiting room.
Mesothelioma Nurse Takes on the Inevitable Loss We All Face
The subject of death and dying is a difficult one to deal with. Reality and emotions are difficult to mesh when we have to deal with the loss of loved ones. Regardless of whether the loss was unexpected or we knew it was coming it is always a deep felt loss. A young person dying in a car accident or an older person dying from mesothelioma, the loss is equally felt by families, friends and the entire community.
We all understand that the one certainty in life is that we are all going to die. No one gets a pass on that one. No matter what we do, how we fight, how we prepare, how much we ignore that fact, it will happen. No one gets out alive.
When we are confronted with our own mortality, what we know in our heads, is different than what we know in our hearts. We all know mesothelioma is a deadly disease, but we expect to have some warning that the end is near. Unfortunately, just recently, two mesothelioma patients died unexpectedly.
One of the patients was scheduled to go home from the hospital the next day. He had surgery and had been doing very well when an unexpected complication quickly led to his death. Despite everything being done, everyone’s best efforts, he died.
The other patient had a long complicated course. However, he had had the maximum support and he seemed to have turned the corner. He was feeling better, no pain and he was finally able to go home with his family. He was home for a week, directing how he wanted things done, enjoying his beloved home and family, and he felt good. At the end of the week, he began to have difficulty breathing after he developed another complication. Again, despite the medical team’s best efforts, he died.
Both deaths left their families and the mesothelioma care team devastated. What could have we done differently? Why did it happen? Why now? The families were left questioning their decisions. Was it the best decision to choose this course of treatment? The decisions that they made with their loved ones were magnified and reviewed again and again.
There are no magic answers, no phrases to alleviate the pain and loss that the families are feeling. We do know that every time a mesothelioma patient dies, the mesothelioma team is affected. A review is held, decisions are reviewed, and patients are remembered as people with families and loved ones, not as mesothelioma victims.
Loss also renews the conviction to continue to fight for the mesothelioma victims, continue to work harder towards a cure. Enjoy today for tomorrow is promised to none of us.
If you have any questions regarding your mesothelioma treatment, feel free to email me at [email protected].
Thanks to All Mesothelioma Caregivers
November is National Family Caregivers Month. Being in the same month as Thanksgiving, this is a group that deserves our thanks – the unpaid caregivers. It is difficult to be the patient, or the sick one of the family, but caregivers have their own challenges. Over 90 million Americans care for others who have a disability, disease, chronic condition or are elderly. Caregivers range from parents taking care of sick children to grown adults taking care of their elderly parents.They cross all socio-economic demographics, but the majority are women.
Oftentimes taking care of a mesothelioma patient is a sudden role that you did not anticipate. One day you and your spouse are living your everyday life, and the next you have been dealt with a serious illness that needs action. Not only are you your spouse’s support, but you are also the sounding board for decisions. Where do we go? What kind of treatment should we choose?
It sounds like a few easy questions, but it is not. It is a tough disease and the questions are not easy to answer. So once you have made decisions and the focus is totally on the patient – what about you, the caregiver? At the mesothelioma center where I work, we feel the caregiver is just as important as the patient and we try to provide support for them as well. But the most difficult thing for the caregiver is to realize that they too are important.
From my Experience of Caregiving, it is a tough job to say the least. It is stressful emotionally, physically and financially. There are a lot of support options for mesothelioma caregivers. If you are at a mesothelioma center, there are probably onsite support groups. You may not think you have anything to add, but consider just showing up and seeing what others say. You may get some advice about how others are handling this challenging role.
Another often overlooked issue is physically taking care of yourself. Caregives must make sure to eat healthy and take an occasional walk. A thirty minute walk can do wonders. It can take you away from the hospital setting, allow you to inhale fresh air and clear your mind. Caregiving is hard work so take breaks. If someone offers to lend a hand, let them, you can always reciprocate sometime. Learn how to communicate effectively with the medical team. Write down your questions. Keep them concise and prioritize which questions you want answered first.
There are many tips that can help the caregiver so please try out a support group or reach out to a social worker or clergy. Above all, give yourself credit for doing the best you can for your loved one.
Visit the following websites designed to support the family caregivers: Generations United, and National Alliance for Caregiving.
Thank you for all you do for your loved ones!
Put Your Trust in Your Mesothelioma Medical Team
One of the things we believe is so important when we talk to mesothelioma patients is the importance of putting your trust in your mesothelioma team. Trust that they have your best interests at heart, and that they will do everything possible to ensure that your wishes are respected.
Both the mesothelioma patient and his or her family must be comfortable with the team and communicate with them what their needs are. When things go well this also seems to work well. Unfortunately, mesothelioma is a complicated disease and it does not follow any rules for anyone involved, including the patient, family or the health care team members.
When we meet patients they are usually in the throes of treatment, whether it be surgery, chemotherapy or a clinical trial. When talking with patients and families they often ask countless questions like: Is this normal? Have you seen this before? What do you think is next? Do people recover from this? Will I ever get out of here?
Being treated for mesothelioma requires trust as well as the ability to assess all the information you have, and to keep it in perspective during this stressful time. Recently, a family member of a patient in the ICU, commented to me how helpful it had been to know what to expect while her family member was critically ill. By phoning before she came to visit, she felt better prepared so when she saw her loved one it wasn’t such a shock. Before seeing her loved one in the ICU she heard terms such as intubated, pressure support, diuretics, weaning, but now she saw all this first hand.
How much information about potential problems is enough? What is the balance between possible complications that happen rarely- but do happen- and the course of your individual mesothelioma journey? As the woman visiting her loved one in the ICU continued to talk to me, I was struck, once again, with how important trust and open communication is for the mesothelioma patient and family.
The importance of receiving the information, but putting it in the right context, is critical. For example, sometimes patients get re-admitted after surgery for a variety of reasons, such as fluid balance, nutritional status, infections, or pneumonia. Often it is just for a few days, but some patients require a skilled nursing facility for a period of time to recover their strength. This is often a difficult time for patients and families as it was not in the original plan.
Ask questions, learn as much as you need to for yourself and your loved one, all the while develop a trusting relationship with your team. The journey is a “long and winding road” with the goal for everyone involved being quality time for mesothelioma patients with their loved ones.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Mesothelioma Nurse Honors American Veterans
November 11 is the day that Americans set aside for honoring our veterans. Today, less than one percent of the people in the United States serve in the military. Mesothelioma makes up less than one percent of all cancers, yet, approximately 33% of all U.S. mesothelioma victims are veterans. Using the often cited number of between 2,500 and 3,000 newly diagnosed mesothelioma cases per year, it would follow that between 750 and 1,000 of those patients are veterans who served our country.
Veterans, like mesothelioma victims, come from all socio-economic backgrounds, faiths, and walks of life. Over the years, it has always been an honor for me to care for our veterans and families that develop mesothelioma. After sacrificing for our country, decades before, they are then afflicted with mesothelioma.
In recent years, improvements have been made in the U.S. Department of Veterans Affairs system for caring for mesothelioma veterans whose diagnosis is service related. Claims are now fast-tracked, and the VA acknowledges that the condition is service-connected. Reach out and educate a veteran who is also diagnosed with mesothelioma about the possibility of benefits.
Don’t let today go by without remembering a veteran. This year, more so than in years past, there seems to be more public attention to honoring our veterans. Whether it is displaying a green light, or giving veterans free oil changes, it is a day to honor, and thank those few among us who continue to keep us safe by serving our country.
We would like to thank all our veterans, those currently serving in our military, and those attending our service academies. To choose to serve our country, when so many other avenues are open for young adults, is a source of inspiration for all of us.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
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