Going through mesothelioma can feel like a daunting and alienating task. The disease is diagnosed in about 3,000 Americans per year. Even so, a small, but intimate mesothelioma community is out there. It is composed not just of fellow sufferers, but also of family members, caregivers, and financial supporters.
No one wants to go through mesothelioma or any other life-threatening disease alone. It is terrifying, which makes it easy for victims to fall prey to their anxieties. One of the most helpful methods for improving your outlook is finding something like a mesothelioma support group.
This not only helps with a patient’s mental health, but it also provides resources that can assist individuals with finding financial assistance for mesothelioma or even new treatment options through clinical trials and other programs.
Additionally, it’s not hard to find subsets of mesothelioma community groups that bring together people of similar backgrounds. Indeed, veterans make up almost one-third of all mesothelioma patients. Finding support with fellow veterans is certainly an important method for improving one’s mindset.
Outside of those diagnosed with mesothelioma, the people who feel the brunt of the disease most are often caregivers. Mesothelioma caregivers are usually close family members like children or spouses who are tasked with the mental, emotional, and physical toll of caring for a loved one. This task is far from simple.
Caregivers often experience:
- High stress and anxiety
- An avoidance of ending to their own needs
- Difficulty sleeping
- Financial stress
- Excessive tiredness
It is easy to get trapped in a loop in which you neglect yourself because your loved one is suffering more. While it is true that a mesothelioma patient will suffer greatly after their diagnosis, that should not preclude caregivers from taking time for themselves.
Burnout is a common experience among caregivers because they end up working tirelessly to care for their loved one. But, a mentally and physically exhausted caregiver is not going to be able to provide the best support.
So, how do you avoid burnout as a mesothelioma caregiver? For starters, you should lay out some ground rules prior to delivering care. This may seem formal and a bit impersonal, particularly if you know the patient well. But, it does help establish parameters and expectations for what you are capable of doing.
Some parameters you could define include:
- Schedules – times and days you are able to provide care (off days should be expected)
- Services you’re willing to do – this can include anything from daily tasks and transportation to feeding the patient and dealing with medical and legal counsel
- Any possible compensation for your services – this is unlikely in cases where the patient and caregiver are well-acquainted
Again, establishing these boundaries may seem impersonal, but it’s the best way to ensure that you remain stable and are, thus, able to offer the best care to your loved one.
After you’ve established some ground rules for what can reasonably be expected of you, it’s important to find a support group of your own. While there may not be an established mesothelioma caregiver community, many medical institutions offer programs that can link you up with other cancer caregivers in your area. This, of course, allows you to share your experiences in a judgment-free zone and find resources for offering more thorough care.
Mesothelioma support groups also give you some time to simply get out of the house. If you spend a lot of time offering care to a mesothelioma patient, you need to get out and do something specifically for you.
Support groups are great, but you can also set aside time to:
- Eat healthy meals
- Socialize with friends and family
- Do anything that relaxes you
Even a quick walk around the block can help energize you and put you in a better mood. On top of that, engaging in activities that you would normally do prior to becoming a caregiver can help you relax and get your head on straight.
You should also understand that asking for help isn’t a sign of weakness. You may be surprised how many people are willing to step in on your behalf to take care of your loved one for a few hours here and there. Even something as simple as picking up prescriptions can help take a load off your back. You should also never be afraid to ask your doctor, oncologist, or even your mesothelioma lawyer for resources that can help you and your loved one.
There is no question that mesothelioma patients require a great deal of community support. Most of that support will come from their friends and family along with their medical and legal team. We’ll discuss mesothelioma support groups a little later, but, for now, let’s look into what sufferers of the disease can expect after diagnosis.
It’s important to understand just how much mesothelioma can take out of you. The disease builds slowly in the body, taking as many as 50 years to start exhibiting symptoms. In some cases, you may never experience major symptoms until you’re diagnosed. Because mesothelioma is often caught in its later stages, the standard life expectancy for most patients is only around 12 to 21 months.
Long-term survivors aren’t unheard of, however. New advancements in medical technology and treatments are allowing for mesothelioma patients to live longer than ever expected. It’s important to create a plan based on your “survival strategy.” You, your family, and your medical team can draw up a comprehensive plan that works best for you.
This should include information like:
- The patient’s medical history and records
- Health strategies and goals and the behaviors needed to help achieve them
- Specifics of the treatment plan, including counseling and complementary treatment methods
- A rundown of common and expected symptoms of the disease side effects of treatment
- Resources for family members and caregivers
- Schedule of appointments and recommended care
Patients who have mesothelioma are going to want to have all of this information and more. Being left in the dark about your disease can lead to confusion and undue stress for an already confusing and stressful situation. Obviously, patients will want to know what types of long-term effects the disease and its treatments will have on them.
Symptoms of the disease often include:
- Chest pain (with pleural mesothelioma)
- Abdominal pain (with peritoneal mesothelioma)
- Dyspnea or difficulty breathing
- A heavy and persistent cough
- Fluid buildup in the lungs or abdomen
- Pain associated with tumors
- Difficulty swallowing
- Difficulty speaking
Some of these can be alleviated with both palliative and curative treatments. Unfortunately, those treatments can lead to side effects of their own.
Chemotherapy is one of the most common treatment methods for mesothelioma, but it’s also known to come with a laundry list of secondary issues, including:
- “Chemo brain” (loss of memory, confusion, and lack of concentration)
- Hair loss
Other side effects can range from nerve pain to osteoporosis. In some cases, these aggressive, curative treatments may not be a part of your survival strategy. As grim as it is, mesothelioma is an unforgiving disease that takes the lives of most of its sufferers within a couple of years.
It is not unlikely for many patients to experience a barrage of negative mental health diagnoses after incurring mesothelioma. Even those who survive far past their original life expectancy prediction can experience mental health side effects (like survivor’s guilt).
Many patients will experience:
- Post-traumatic stress disorder
- Feelings of alienation
Mental health counseling can prove to be extremely helpful for many patients. There is no easy method for dealing with a mesothelioma diagnosis, and everyone is different. In order to improve your chances of survival, however, you need to have a plan that involves living as healthfully as possible during your treatment regimen.
A good diet and solid exercise can help both the physical and mental parts of your body as you deal with this deadly disease.
Another stressful aspect of a mesothelioma diagnosis is the cost. As with any major illness, treatments are going to cost money, and the price is rarely affordable for most people. Obviously, the best method for getting financial support for mesothelioma is to have health insurance. But, even then, not all health insurance packages are created equally. It’s important to understand exactly what your insurance will cover if anything at all. One insurance plan may cover 90% of all your medical bills while another plan will only cover half.
Even if your insurer covers 90%, you may still not be able to pay for all the costs associated with mesothelioma treatment. Simply diagnosing the disease can be an expensive proposition.
Diagnostic procedures often include:
- Blood tests and biomarkers
- Imaging scans (MRI, CT scan, etc.)
- Fluid biopsies (through needle aspiration)
- Invasive and minimally-invasive tissue biopsies
All of these tests can end up costing upwards of $10,000 to $20,000 and sometimes more. This is partially due to the fact that mesothelioma is hard to diagnose, and doctors will spend a lot of time ruling out other, more commonplace diseases before they arrive at the right diagnosis.
Once an actual treatment regimen has started, costs will quickly skyrocket. Radiation therapy can cost anywhere from $7,000 to $12,000 per treatment while chemotherapy typically ranges from $35,000 to $50,000 per treatment course. Surgical procedures can cost anywhere between $10,000 and $30,000. Obviously, this can be impossible to afford for many people, particularly when they undergo multiple courses of chemotherapy and/or radiation treatment.
Fortunately, there are options for receiving financial assistance for mesothelioma treatments. A good health insurance plan is obviously a big help and can be used in conjunction with other financial assistance methods.
Some methods you can try include:
Hospitals and cancer centers may be amenable to waiving certain fees or even lowering costs for certain treatments if you ask. Contact administrators or department heads to find out.
Some clinical trials that test out new and emerging treatments may provide funding for all or part of a mesothelioma patient’s participation in their study.
Former military members can receive free or low-cost mesothelioma treatment at VA hospitals or other cancer centers if they can prove they were exposed to asbestos (the mineral that causes mesothelioma) during their time in the military
Federal, state, and local governments may have programs that patients can enroll in. Additionally, certain people may qualify for Medicare or Medicaid insurance based on their age or income
Many mesothelioma sufferers have successfully earned settlements from corporations who used asbestos-laden products. Asbestos “trust funds” are also an option to help offset costs.
It may also be beneficial to ask your oncologist or local cancer center if there are any methods for attaining financial assistance for mesothelioma. They can give you the resources and steer you in the right direction. Organizations like NeedyMeds, the Patient Access Network, and the Partnership for Prescription Assistance can direct you toward local programs, low-cost clinics, and other organizations that help you pay for prescription medications and other treatments.
Auxiliary costs like travel and lodging also have low-cost alternatives. For instance, some hotels provide low-cost, long-term lodging for cancer patients staying near cancer centers. The American Cancer Society’s Hope Lodge program also seeks to provide free or low-cost lodging. Volunteer pilots from non-profit organizations like the Air Charity Network or LifeLine Pilots will fly patients for free to hospitals and cancer centers throughout the United States.
Support groups often feel like a lifeline for mesothelioma patients whose experience may seem isolated and alone. The fact is that there are many people in the mesothelioma community who are suffering from the disease. Being able to communicate your situation and your frustrations with someone who intuitively understands can be restorative.
It’s understandable for mesothelioma patients to seek out a genuinely empathetic group of people who are undergoing a similar trial. Mental and emotional wellbeing are important aspects of overall health, and mesothelioma support groups can certainly improve that. But what are some other benefits of support groups for mesothelioma sufferers?
They can include:
- Being able to hear stories of other patients’ issues
- Learning how to cope with cancer from other patients who have been experiencing it
- Connecting with other patients, caregivers, medical professionals, and long-term survivors
- Gaining resources such as information about new clinical trials and experimental treatments
Of course, a prominent mesothelioma community might not be available at your local hospital or cancer center. But, there are many cancer patients who are undergoing similar treatment paths that most mesothelioma patients can connect with. For instance, most cancer patients (including those with mesothelioma) experience some form of chemotherapy. That alone can create a bond and a sense of community.
How do you find support groups whether they are specifically for mesothelioma or not? Cancer clinics and centers and local organizations often provide a variety of cancer support groups.
For some patients, the idea of a cancer support group may be nerve-wracking because of the inherent discomfort in sharing your personal experiences. Even so, there is usually no expectation for visitors to speak up during every support group session. Research all available support group options, and even try out a few to find the one that is the best fit for you.
Some variables to consider include:
- Whether the group leader is a fellow patient, counselor, medical professional, survivor, etc.
- The members of the group (again: fellow patients, family members, caregivers, etc.)
- The length of the sessions
- Where the sessions are located (how far away is it from you?)
- The size of the group and your comfort level
- Whether you have to speak if you attend
- The group’s main goal
If you would rather experience a support group that is specifically tailored to mesothelioma patients, then the internet may be your best bet. You can practically find any sort of mesothelioma support and community on the internet somewhere.
Most online mesothelioma support groups come in the format of:
- Online forums and message boards
- Chat rooms
- Email chains
- Facebook groups
- Other online group settings
These methods can help connect you with people who have similar mesothelioma diagnoses, and they also allow you to stay within your comfort zone if a large, in-person meetup is disconcerting. Conference calls are also often a great way to experience the benefits of a support group without having to appear in-person at a cancer center that may be too far away.
No one wants to go through mesothelioma alone, and, while family and friends will be there for most patients, having a group of people who truly understand your plight is extremely valuable.
Support groups allow you to ask for help and get genuine support and insight from people who are experiencing everything you are, and there’s nothing that can replace that feeling.
There are many ways that you can get involved in the fight against mesothelioma whether you are connected to the disease or not. Of course, one of the most salient ways to get involved is to make your voice heard in regard to the usage of asbestos in the United States.
Asbestos is the only known cause of mesothelioma, and it can also be responsible for other diseases like asbestosis and lung cancer. Asbestos is also still legal to import into the United States with new rulings possibly opening up more uses for the toxic substance.
The Asbestos Disease Awareness Organization (ADAO) is one entity that is fighting for a global ban on the substance. It seeks to raise awareness of the hazardous nature of asbestos and the many different diseases it can cause. Twenty million Americans alone will develop mesothelioma at some point in their lives, according to certain estimates.
The ADAO is trying to significantly lower that number both in the United States and throughout the world. Donations are a great way to keep organizations like these going.
Research into mesothelioma is also always ongoing. Many organizations fund research to help make progress in stamping out this terrible disease.
These organizations also often provide advocacy for a global asbestos ban, and they include:
- Mavis Nye Foundation
- Mesothelioma Applied Research Foundation
- American Cancer Society
- International Mesothelioma Program (IMP)
IMP was created through a combined effort of the Dana Farber Cancer Institute, the Brigham and Women’s Hospital, and the Harvard School of Medicine. It is considered one of the leading ventures for a cure for mesothelioma. Of course, its research has also uncovered more thorough diagnostic procedures and better treatment options that have improved life expectancy and prognoses. Again, donating to any or all of these organizations and programs is a helpful way to raise awareness and ultimately find a cure.
National Mesothelioma Awareness Day occurs on September 26 annually and provides a great way for you to start a conversation with your peers and friends. Numerous fundraising events take place on that day, and you can even start a fundraiser of your own.
If you’re feeling very ambitious, consider organizing a writing campaign to your legislators to call for a ban on asbestos. Contact local media sources to help publicize fundraising events in your area. Even a simple post on social media can go a long way in helping curb the effects of this disease.
You can also do this any day of the year, but a nationwide, coordinated effort occurs each year on September 26. You can also help on an individual level by volunteering to drive patients to their appointments or run errands for patients and their caregivers. Any little bit helps.
Veterans make up one of the largest communities of mesothelioma patients in the United States. This is largely because asbestos was commonly used in buildings, ships, and occupational settings in which veterans spent a lot of time. From the 1930s to the 1970s, asbestos was thought of as an inimitably useful substance for fire- and heat-resistance.
This is especially true on ships where the threat of fire in engine rooms could take out an entire vessel with no option for rescue. Of course, asbestos wasn’t just found on marine vessels.
Asbestos exposure occurred (and continues to do so) in all branches of the military, including:
- Air Force
- Coast Guard
Asbestos was often used in the construction of barracks, vehicles, and bases. Insulation, roofing tiles, cement, and other products containing asbestos remained in these places long after regulations had limited the production of asbestos in the United States. Additionally, military members are often deployed throughout the world in locations where asbestos regulation is non-existent.
Certain occupations within the military were also at a higher risk of asbestos exposure. Some of these jobs include:
- Shipyard workers
- Insulation workers
- Vehicle or aircraft mechanics
The branch of the military most at risk asbestos exposure between the 1930s and 70s was the Navy. As previously noted, naval vessels often contained high quantities of asbestos in an effort to ward off fires.
Navy soldiers who worked in the engine room were at the highest risk, but asbestos could be found throughout almost any vessel, including:
- Aircraft carriers
- Cargo ships
- Transport ships
The Marine Corps and the Coast Guard also faced similar risks on their vessels. Army veterans, on the other hand, may have been exposed to asbestos in any number of government-constructed buildings or vehicles. Asbestos could be found in buildings materials that composed barracks, mess halls, training facilities, warehouses, and virtually any other building on a military base. Vehicles were also manufactured using products that contained asbestos, like brakes, clutch linings, gaskets, and interior insulation.
Air Force members also had to deal with buildings that used asbestos-containing materials. Aircraft were also often manufactured with parts that used asbestos, such as braking systems and engine insulators. Aircraft mechanics were likely most at risk because they dealt with this implements firsthand.
After military service, many members who had initially been exposed to asbestos during their time in the armed forces took jobs in fields that also added to their exposure. Obviously, they had cultivated skills in the military that served them in civilian life, but it only ended up increasing their potential risk for asbestos exposure.
Knowing all of this, is there any recourse for military members looking for compensation or other benefits? The Department of Veterans Affairs (VA) has a claim process that you can use in order to receive benefits for service-related illnesses. Not everyone is eligible to file a claim.
Some of the major requirements include:
- Exposure to asbestos must have occurred during active duty
- A diagnosis of an asbestos-related disease must have been made by a medical professional
- Disease must be related to exposure to asbestos that occurred during service
- The claimant must not have been dishonorably discharged
Claimants must also provide evidence that asbestos exposure did, indeed, occur during active duty. In most cases, you can do this by identifying your job in the military or where you served (for instance, on a ship or in a country with no asbestos regulation). A mesothelioma lawyer can also assist you with filing a claim with the VA.