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A diagnosis of mesothelioma is often the starting point for a whirlwind of activity and emotions. Patients are often put into the position of suddenly learning enormous amounts of information about a disease that they may never have heard of before, and trying to understand treatment options that are frightening. Even more difficult is the fact that our society tends to focus on the fight against cancer as something that must be won, and that is not a likely outcome for mesothelioma patients.
Because mesothelioma tends to have a survival time line that does not exceed two years, it is important that those who come into contact with mesothelioma patients have a realistic and good understanding of what they are facing and what the right and wrong things are to say to them during the course of their illness and treatment. Here are a few helpful tips that have come from both mesothelioma patients and their caregivers.
1. I’m here for you.
There’s an old phrase that says that 90 percent of success lies in just showing up, and that is particularly true when it comes to helping a person who is struggling with mesothelioma or any kind of cancer or serious illness. Being there for somebody can mean a lot of different things. It might be sitting and listening when they want to talk about their fears, and it may be vacuuming their house for them or bringing over a pot of nourishing soup. Little things mean a lot, but the fact that you take the time out of your own schedule to be there for them means more than anything else.
2. Everything happens for a reason.
This meaningless phrase does nothing to help a person who has been diagnosed with a deadly disease, and can sometimes imply that their illness is a result of something they have done wrong earlier in their life. Mesothelioma is a disease that afflicts people after they have been exposed to cancer, and also is a result of them doing nothing more than working to support themselves and their family. Instead of trying to imply that the cancer or their limited future makes some kind of sense, ask how you can be of help, and listen to what they have to say and what they are feeling.
3. Don’t question their therapy or treatment plan.
Though it may be helpful for you to do some internet research in order to have a better understanding of what the mesothelioma patient is going to be going through, the information that you have gathered does not in any way qualify you to provide a medical opinion. Treatment protocols for mesothelioma vary based upon where the cancer is located in the body, what type of mesothelioma cell is present, and the degree to which the cancer has spread. It is also often a function of private discussions that have taken place between the patient and his physician about exactly how aggressively the patient wants to pursue treatment. Unless you have access to all of this information, it is better to simply provide encouragement for whatever decisions have been made about treatment.
4. I was talking about you the other day to…
One thing that is essential is that you respect a mesothelioma patient’s privacy. Cancer patients often complain that once they are diagnosed they suddenly stop being treated like a person and instead are treated like a disease. Remember to respect their privacy and that there is a person with feelings involved. Unless they have given you specific permission to talk about their condition to a specific person, don’t talk about their treatment or their prognosis.
5. Remember that if they didn’t ask for your opinion, they probably don’t want it.
People who are interested in knowing what you think are very likely to ask, but that doesn’t seem to stop people from offering their opinion. Remember that when you start a conversation with the word “I”, it is about you, not them. The person who has been diagnosed is the person that needs the attention. Try to remember that, even if what you are doing is telling a story about your own experience. Find a way to talk about something that helped you while asking if that would also work for them – and if they say no, then respect their wishes.
6. Come up with a concrete list of things you can do to help.
It can be exhausting for a mesothelioma patient to come up with a list of requests and things that they need done, or that you can do to help. Instead, come up with your own list of ideas for things that you can do to help and ask them to say no or yes.
Page Edited by Patient Advocate Dave Foster
Dave has been a mesothelioma Patient Advocate for over 10 years. He consistently attends all major national and international mesothelioma meetings. In doing so, he is able to stay on top of the latest treatments, clinical trials, and research results. He also personally meets with mesothelioma patients and their families and connects them with the best medical specialists and legal representatives available.