The first thing most victims or family members feel when they hear a diagnosis of mesothelioma is numbness or disbelief. There are several reasons for this feeling, not the least of which is the fact that the victim of this rare and deadly form of cancer may not even know he or she was ever exposed to asbestos.
In other cases, the victim may simply have not been feeling well for a while and have been seeing their doctor quite regularly and each time been assured that there was nothing seriously wrong with them and this or that treatment would set things right.
In most cases the doctor will want to arrange for more tests to see how advanced the cancer is and to devise a treatment plan. In all likelihood, you and your family will go through the procedure of setting up these tests, barely aware of what you are doing, but feeling the urgency to have them done as soon as possible.
What do we do next?
Many mesothelioma victims and their families go home wondering what exactly they should do next. In most cases, the first instinct is to wait and see the outcome of the further tests. However, as hard as it may seem, you need to swallow your fear, your sorrow and anger, and begin to act. While this may seem difficult, if not impossible to do, there are things that need to done immediately to have everything in place before treatment ever begins.
There are some things that are best handled by the person who has the mesthelioma themselves and these should be handled before treatment begins, as most times, treatment will be aggressive and can rob you of your physical, mental and emotional strength. So dealing with relevant issues as quickly as possible will allow you to concentrate on your treatment once it starts.
There are also some things that the family can deal with and these too should be gotten out of the way prior to the beginning of treatment so that you can be available to help support and comfort your loved one throughout the treatments without harming your own health. Here are some things that should be started as quickly as possible.
Inform yourself about mesothelioma
As strange as it may seem, most people rely on their doctors and others to supply them with information regarding mesothelioma. While your doctor is an excellent source of information, he shouldn’t be your sole source of information, or even your initial source. Learning all you can about this disease, its stages and possible treatments, may not be pleasant but it will help you feel more prepared for what lies ahead. Being prepared will help you to ask the questions you need to ask, and make intelligent choices about your care. It will also help you feel more in control, which is important for you and your family.
Take care of the necessary preparations
For the mesothelioma suffere, it is important to make sure that certain preparations are in place while you are still feeling reasonably strong and able to make those important decisions that may affect your later care and your family’s future. If you have not already done so, now will be a good time to see an attorney and do the following:
* Prepare your will. This document is legal and binding and makes clear your wishes of what you want done with your property and personal effects. Your attorney can explain to you what your will should include so that everyone understands what your wishes are. Make sure you appoint an executor of your estate who will follow through on those wishes without hesitation.
* Draw up a durable power of attorney. A Durable power of attorney is a document that assigns someone to make legal decisions for you in the event you cannot make those decisions for yourself. These could be decisions about your business if you own one, making payments on your behalf and other important things that need to be done. If you are planning to ask someone else to make medical decisions on your behalf, this should be stated as an exclusion in the Durable Power of Attorney and you should then make out an Advanced Health Care Directive.
* Living will. A living will is a document outlining the care you want to receive for your illness in the event you cannot speak for yourself. The living will may include certain types of treatments you may wish to forgo and other measures such as No Resurrection orders.
* Advance health care directive. An advanced health care directive is giving someone the authority to make medical decisions on your behalf. In some cases, this is used in place of a living will in others it is used to accompany the living will in case situations arise that you did not foresee when you made out your living will. The person you choose to carry out this task should be someone you trust and you feel would know what your wishes are, in regard to various treatments.
* Other arrangements. You may think of other advance arrangements that you would like to make yourself, such as showing your spouse or children where the key to the safety deposit box is, or where you keep your personal records. Some people even want to go into detail and show a loved one where the recipe books are kept, how to start the lawnmower or operate the house alarm. If it is something you want to get out of the way to make your loved one’s life easier, should you no longer be able to complete certain tasks, by all means do so. You will rest easier knowing that they can take care of themselves in these situations and they will be able to handle these tasks should the need arise, with confidence.
Family members will often feel as though the making out of these documents and making these arrangements, is like their loved one is giving up. This is not the case. Rather getting these documents out of the way now, allows the mesothelioma victim to focus on treatment rather than worry about what should happen should they die. Knowing that their family is provided for and their wishes will be fulfilled in the event that they can no longer speak for themselves, actually allows sufferers to concentrate all their efforts on trying to recover.
Start looking for financial help with your medical costs
Mesothelioma treatment and care is expensive and more times than not, it puts a burden on you and your family, at a time when you need it the least. By looking into different ways and means of getting financial help for your medical costs, you may be able to form an idea of how your care will be paid for. While you or a close family member may have to make the actual arrangements, other family members and friends can help you search out possible places where you may get assistance. Here is a partial list that may help you get started.
* Insurance. If you currently have insurance coverage talk to the claim representative and find out if your policy will cover all or part of your medical expenses.
* Social Security Administration. Another good place to start looking for assistance with those medical bills is the SSA. If you cannot work due to your illness then you may be eligible for disability payments, which can help pay for your daily living expenses and part of your medical expenses in some cases.
* Patient Assistance Programs. Patient assistance programs are usually run by pharmaceutical manufacturers and these programs are designed to help patients who cannot afford to pay for medication, get the medication they need, either at a reduced cost or free. Your doctor can give you information on how to get in touch with one of these programs.
* Medicaid or Medicare Programs. Medicaid programs are for people over 65 and Medicare programs are for everyone else. These programs if available, often help you get medication and treatment at a reduced cost.
* The company from which you were exposed to asbestos. If you were exposed to asbestos through a company you worked for in the past, you may be able to get some financial assistance from the company itself. In view of so much litigation regarding asbestos exposure and mesothelioma, many companies, as part of a settlement agreement, have set up a fund to pay for medical expenses for employees who contract mesothelioma. You may have to contact an attorney to set up the financial arrangement for you but this could help to not only relieve much of the medical costs but also offer some kind of compensation for your family in the event you don’t survive.
* Recovery. Recovery may mean mounting your own legal suit against the company that exposed you to the asbestos or to the manufacturer who produced the products to which you were exposed. While litigation is often a long process, in these cases, it often has a positive outcome by helping pay off some of your medical expenses.
Build up your emotional support
This is going to be a very difficult and stressful time for you and your family. You are going to need to have support to get through everything that lies ahead, so getting your support group in place early will help to make things less difficult and stressful in the days to come.
One of the best sources of support throughout this whole ordeal will be other people who are going through the same thing you are going through. Find a mesothelioma support group in your area if at all possible and if not then at least find a cancer support group and start attending meetings. Both the mesothelioma sufferer and his family members can benefit from attending some meetings. Here you will find someone willing to listen, a shoulder to cry on and a great source of information about everything from securing financial assistance to the latest mesothelioma research. There is nothing like sharing the burden you are carrying, with people who know exactly what you and your family are going through.
Family, friends and even members of your church or clubs you belong to, can provide additional support during this trying time. While most of these people won’t be available to offer support on a day-to-day basis, many will certainly be there to help when things get especially stressful. You may just be surprised how many people will volunteer to help you out with everything from doing a load of laundry, to shopping, to helping with transportation to and from medical appointments. Don’t be too proud to accept help from those who offer, or to ask for help when you really need it.
Hope for the best, plan for the worst
One of the hardest things for families of mesothelioma victims is facing the reality of the situation their loved one is in. In most cases, the victims themselves accept the fact that survival even for a few years is an outside chance at best. However, families feel that by accepting the facts, they are somehow betraying their loved one. It is not a betrayal to be realistic. While you should plan for the worst and accept the reality of the situation, you should never give up hope.
Researchers are working every day to try to find more treatments to prolong the lives of those suffering from mesothelioma and to find a cure. Having hope and staying positive will be the key to being able to function in the months and perhaps years ahead.
When treatment starts – A patient’s perceptive
Once the doctor has completed all his tests to see how far the mesothelioma has spread, he will then want to discuss treatment options with you. The options that will be available to you will in large part, depend on just how widespread the cancer is. If the cancer has not metastasized (spread to distant locations in the body) your doctor will probably want to start aggressive treatments as soon as possible.
These treatments may include surgery and chemotherapy, among other options. If you have been able to do some reading on mesothelioma prior to this meeting, you may well have some questions prepared in advance that you want to have answered. Having some knowledge about the various possible treatments will help you know what to expect when your doctor outlines the options available. Remember that the treatment options are just that and you can refuse any option that may be offered and ask the physician about other possible treatments.
Keep in mind that whatever course of treatment you and your doctor agree on, there are going to be some good days and bad days ahead. If you have chosen to have aggressive treatment to try to stop the mesothelioma from spreading, then there will be days when it will seem like the side effects of these treatments are actually worse than the disease itself. It is vital during this period, to try to keep up your strength and your positive attitude and to interact with your family as much as possible.
The effect of treatment on family members
Family members too,will find that treatments sessions will take their toll, not only on their loved ones during treatment but on themselves as well. During this time is it going to be essential to get away from time to time and take a break. As much as you want to be with your loved ones and help them deal with the side effects of treatments, you also need to care for yourself, so that you can be there to help them.
Keeping your own spirits high, and getting proper rest and nutrients, will help you to stay positive and focused when your loved ones need your attention and support the most. It isn’t going to be easy seeing the effects of these treatment procedures on someone you love and you are going to need your own support system to help you deal with your emotions and fears.
Deciding enough is enough
There may come a time when the mesothelioma advances to the point where there is no longer any hope and you may want to end all treatment at this point and let nature take its course. Many mesothelioma victims dread this point because they feel guilty about leaving their loved ones behind and fear that they simply won’t understand their decision to end treatment. There is no need to feel guilty and you need to make the choice that is best for you at this point in time. Call your family together, explain your decision and ask that they accept your decision and offer their support.
Now is the perfect time for you to say all those things you wanted to say to each member of your family. This is not only your opportunity to say good-bye on your own terms but to leave them with a lasting memory that they can cling to in the difficult days to come.
Family members and accepting your loved one’s decision
Most family members when faced with their loved one’s decision to stop treatment, want to beg them to continue to hang on, for just a little longer. You have held on to hope so long and you are not ready to give up that hope just yet. However, accepting your loved one’s decision is the most loving and supportive thing you can do at this point. Making their last days as peaceful and comfortable as possible, needs to become your mission at this point.
This is also an opportunity to say all the things you want to say. It may not seem like it at this point, but telling your loved one what is in your heart will help you heal later. Many family members of people who have suffered through a long illness have stated that their one regret was not telling their loved one how they felt when they had the chance. This is your opportunity to do just that, so don’t let the opportunity pass.
The last days
Those last days you and your loved one spend together, is going to be a bittersweet time. While some mesothelioma victims stay alert almost to the end, others lose a sense of time and place and may not even recognize those who they are closest to. During this time, there will be little you can do, except make that person as comfortable as possible and be there to show your support and love.
You are going to need some help during this time, both emotionally and with giving care to your loved one. You may want to contact Hospice to help during this time. Hospice is an organization that will send a qualified nurse to help care for the mesothelioma sufferer anytime within the last 6 months of their life. They will also provide emotional support for the family during this time as well. While they cannot make your loss any easier to bear, they can help all members of the family get through these last days and may even suggest counseling and other services to help.
You won’t be prepared
No matter how long the struggle has been, or how well you think you have prepared, you won’t be prepared for the end of your loved one’s life. You will still need time to grieve and to heal and you are going to need all the support you can get in the coming months. Here are a few things that may help you get through those difficult times.
* Continue with your mesothelioma support group for at least a few months. These people while not professionals, are the most qualified to help you get through this time and they will understand your need to talk things through.
* Seek grief counseling if necessary. Statistics show that people who have a loved one who has gone through a long terminal illness, often need more, not less time to work through their grief. A grief counselor is trained to help you throughout this process.
* Share your good memories. Studies have shown that sharing your good memories of the person who is gone, often helps to bring a sense of peace and helps to overcome those bad memories associated with the illness itself.
* Lean on family and friends. That is what they are there for and their support during this time can make a big difference to your own recovery.
* Allow yourself to grieve. Always remember that you have lost someone special and that you are entitled to grieve the loss of that person. People work through their grief at different rates so don’t set a timetable for yourself. You have also been through a long ordeal yourself and you need to physically as well as emotionally heal, from everything you have gone through.
Mesothelioma is one of the most traumatic illnesses a family can be faced with. The entire process from diagnosis to death, is difficult and painful for all concerned. Having some idea where to go for financial, medical and emotional support is essential in helping victims and their families deal with this disease. If you know a family that is suffering through this illness, offer your support in any way you can.
If you don’t know anyone who has or has had this form of cancer, consider yourself lucky and consider giving a donation to the Mesothelioma foundation to help them find a cure or at least more effective treatment for those suffering from this disease. Even a small donation may someday save a family from going through this painful ordeal.