Category: Nurse’s Corner
A Look at 2016 Mesothelioma Conferences
We know from previous years that approximately 3,000 people in the United States will be diagnosed with mesothelioma. Of those 3,000, approximately one third will be veterans of the U.S. armed forces, they will be in their seventies and the majority will be males. Their asbestos exposure, the known cause for mesothelioma, will be as many as 20- 50 years before their diagnosis. These facts have not changed for many years.
The good news is the treatment, clinical trials, information, and options are so much more advanced now – and they will continue to advance in 2016. Through our ability to find information on the internet, and the availability of published research and public international conferences, we have been able to share the knowledge. With these resources, patients and families living with mesothelioma are better able to make more informed decisions.
Learn firsthand about the latest breakthroughs at these upcoming 2016 conferences:
- 12th Annual International Asbestos Awareness and Prevention Conference – Presented April 8-10, in Washington D.C., by the Asbestos Disease Awareness Organization. Following the theme “Where Knowledge and Action Unite,” the conference brings together speakers ranging from experts, victims, and unions to lawmakers from across the globe to speak about efforts in asbestos education, advocacy and awareness.
- 13th International Conference of the International Mesothelioma Interest Group (iMiG) – Held May 1-4 in Birmingham, UK, this conference, under the theme of “Towards Personalized Care,” will address the entire patient pathway and look beyond the scientific topics alone.
- International Symposium On Malignant Mesothelioma – Presented by the Mesothelioma Applied Research Foundation, this year will consist of three individual conferences in major cities: Houston (May 20), San Francisco (Sept. 16), and Chicago (Oct. 7). Each conference will feature top mesothelioma experts, professionally-moderated support sessions, and numerous opportunities for socialization. Patients, caregivers, family members, medical professionals, and anyone wishing to learn more about mesothelioma should feel free to attend.
If physically attending these conferences is not possible, look into attending “remotely” via the internet.
Knowledge is power. As the year progresses, follow along and we will update and expand on the pertinent mesothelioma conferences.
Sources:
- 12th Annual International Asbestos Awareness and Prevention Conference
http://www.asbestosdiseaseawareness.org/archives/34425
- Asbestos Disease Awareness Organization
http://www.cvent.com/events/2012-annual-asbestos-awareness-conference/archived-e6277e3d443b4c059bed43fc0937b530.aspx - 13th International Conference of the International Mesothelioma Interest Group
http://imig2016.org/
- International Symposium On Malignant Mesothelioma
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578185/k.F0D0/INTERNATIONAL_SYMPOSIUM_ON_MALIGNANT_MESOTHELIOMA.htm - Mesothelioma Applied Research Foundation
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8598593/k.D685/Homepage.htm
Importance of Communicating to a Loved One with Mesothelioma
There are a few things that struck me this week as I was taking care of a mesothelioma patient. I always learn something from every patient. The patient, who had surgery was doing very well, and his wife came to visit him often. But, she was concerned about another family she had met while her husband was in the hospital.
The other patient was not doing as well, and he and his wife were from out of state. His wife was alone, although they had grown children who were in phone contact, they both told them not to come. At the beginning this plan was working for them, but as time went on, the wife needed some support and relief.
With the holidays approaching, they were reluctant to “bother” their children. Mesothelioma is a very difficult disease and treatment regimen to endure alone. To be far from home and to have this on your shoulders is a lot. Family and friends want to do the right thing, but often they don’t want to overstep their boundaries. People want to respect the patients and their families privacy.
In different situations when the parents did call for help, I have heard, “Why didn’t you call me sooner?” “We wanted to come, but you didn’t want us to.” Often, in the caregiver’s and patient’s eyes asking for help and support is an admission that things are not going well. What I have seen is that some caregivers and patients are not going to ask for anything, regardless of the situation.
As a friend or family member, keep this in mind. If you are calling and getting the same answer that they are fine and do not need anything, if this does not feel right, if your instinct is telling you something else, listen to it. Ask yourself this one question: “At what point are they going to ask me to come?” You might be surprised with the answer – it very well could be never. That answer is out of love, and is not to exclude you. They fear burdening you and upsetting your busy life. They also feel they should be able to handle this by themselves.
If you think you want to do something, just do it. Patients and caregivers don’t want to bother anyone, and sometimes they do not even know what they need. Often it can be just a warm smile, a hug or just a presence. Although you think you won’t make a difference, you have no idea how a small gesture will make someone feel. It is hard to handle mesothelioma alone, regardless of the holidays.
Please, if your instinct tells you to do something large or small, listen to it!
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!
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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