Getting a diagnosis of cancer is never easy. It can be even more overwhelming when you discover you have a rare cancer, like mesothelioma. The physical symptoms and the emotional impact can take over and make managing your diagnosis an uphill battle. Nurse navigators are there to help during these difficult times.
As a mesothelioma nurse navigator, I am an experienced medical professional with specialized training in caring for mesothelioma patients. I understand the challenges, obstacles and complex situations patients and their families encounter. I’m here to provide you with information, resources and support to empower you throughout your cancer journey.
Here are just a few ways I can help empower mesothelioma patients.
Educational Information
Knowledge is power, but without action, it can be useless. I provide mesothelioma patients with strategies and resources to help explain mesothelioma, I am available to discuss treatment options and provide information on many other health-related issues.
When a patient is educated about their disease, they are more likely to take an active role in making decisions about their care and to communicate more effectively with the healthcare team.
Develop a Support System
Developing a strong support system is vital to managing a mesothelioma diagnosis. I encourage patients to reach out to their families, friends and treatment team for guidance and support. As a nurse navigator, I can also help connect patients and family members with unique support groups for their specific needs.
Joining a support group is a great way to share and listen to others who might be experiencing some of the same struggles. These groups not only provide patients with an outlet to discuss their challenges but they are also a place to receive practical information and emotional support while navigating a cancer diagnosis.
Many mesothelioma support groups offer virtual meetings, so patients can access this resource without having to leave home. There are groups available for patients, family members and caregivers. As a nurse navigator, I can provide more information about these support groups and how you can find a group that will fit your specific needs.
Effective Communication
Learning more about mesothelioma, treatment options, symptoms and potential side effects can help patients and families communicate more effectively with their medical team.
Here are some tips:
- Write down your questions beforehand. Keep a written log of questions in between doctor’s appointments to ensure you don’t forget anything important during your appointment.
- Don’t be afraid to ask questions. Ask as many questions as you need. There are no bad questions when it comes to your health. Your doctor is a medical professional and is the best resource when trying to understand your health.
- Be clear and direct. Be open and honest with your doctor about any new or worsening symptoms you are experiencing.
Calling your doctor’s office in between scheduled appointments to address any questions or concerns is encouraged. Your medical team cannot help you if they are unaware of any arising issues or concerns.
Self-Advocacy
It is important for patients to advocate for their own medical care. Patients need to be active participants in decision-making, voicing their concerns, expressing their wishes, and asking questions.
Patients may need to make some difficult decisions, like seeking a second opinion from a mesothelioma specialist. Mesothelioma is a rare cancer, and not all oncologists and surgeons have the knowledge and experience needed to effectively treat this disease. Finding a mesothelioma specialist to review your diagnosis and determine your treatment plan is one of the most crucial steps to take after receiving a diagnosis.
I have access to lists of top mesothelioma specialists at the top cancer centers in the country. I can help you find one that meets your specific needs.
Tools for Organization
Managing the complex diagnosis of mesothelioma can be overwhelming. There are many tests, appointments, treatments and more to keep track of. Staying organized can give you a sense of control in an uncontrollable situation. Try to keep dates, questions, test results, notes and other information in one place. If this becomes too overwhelming for the patient to manage, it may be necessary to elicit the help of a family member, friend or caregiver.
Notebooks, binders, calendars and smartphone apps are all great ways to help stay organized. Ask me about additional suggestions and organizational tools.
Financial Resources
Medical costs and out-of-pocket expenses can pile up quickly when undergoing treatment for a rare cancer, like mesothelioma. However, financial limitations should not keep you from the care you need.
Be sure your medical team is aware of your financial concerns or limitations. There are resources available to set up payment plans or refer you to other assistance programs within your medical facility or community.
Here are some resources that can help:
- Medical insurance: If you have health insurance, check with your provider to understand your coverage for mesothelioma treatment.
- Government programs: Government programs may be available to help with medical bills. Your nurse navigator can help you find out if you qualify.
- Asbestos trust funds: If you were exposed to asbestos in the workplace, you may be eligible for compensation from asbestos trust funds. A lawyer specializing in asbestos cases can advise you of your options.
If you need assistance finding and accessing any of these financial resources, feel free to contact me anytime at 888-385-2024 ext 102 or karen@mesotheliomaguide.com.
Provide Comfort and Support
Getting a diagnosis of mesothelioma is a serious shock to everyone involved. Managing the emotional and psychological impact should be a priority.
I encourage patients to stay involved in activities or hobbies they love, spend time with loved ones, find ways to quiet their minds and manage their stress (meditation or yoga). Seeking professional counseling may be recommended if you are struggling to cope with the challenges you are facing.
Empowering mesothelioma patients and families throughout their cancer journey is my biggest priority. I strive to be a source of information, resources, support and comfort. It is my practical and professional experience that allows me to provide individualized care to each patient.
Finding Hope and Support on Your Mesothelioma Journey
A mesothelioma diagnosis can be life-altering, but you don’t have to face it alone. As the Mesothelioma Nurse Navigator at Mesothelioma Guide, I am here to help you navigate the complexities of your diagnosis and empower you to take an active role in your care.
Whether you have questions about treatment options, need help managing your symptoms, or seeking emotional support, I am here to guide you through each step of the journey.
If you have questions or want more information – you can contact me at 888-385-2024 extension 102 or karen@mesotheliomaguide.com. Together, we can find hope and support on your path to healing.
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