It is now 2018 and as years pass, medical information about Mesothelioma is becoming more easily accessible to the public. Like anything, some websites are more reliable than others and it is unfortunately up to you to weed out the ones that carry more validity. Websites that are most accurate are written from people who are currently and actively caring for patients who have Mesothelioma. With that said, there is not that much available on these websites about emotions. Emotions are a huge part of the disease and recovery.
As we write blogs, frequently they are based on patient’s experience and medical experience. Following blogs like this one can allow you to read and inform yourself at your own pace. Many patient’s blog their own experience whether it be how their diagnosis was initiated, how they are handling chemotherapy, side effects from drugs or other issues. This can help with building a community of support. Despite Mesothelioma being a rare disease, the emotions and feelings are far from uncommon. Often this can help if you are feeling alone, scared or depressed. No one knows better than a fellow Mesothelioma patient. Your loved ones are doing everything for you but it is not the same as speaking with another person experiencing what you are enduring.
Some patients get through their journey by keeping a journal of their thoughts and emotions. Some people do it just for themselves and others have people follow them. Whatever the reason you choose, whether your thoughts become public or private it may just help you or someone else.
Many patients with different types of cancer blog as well. You don’t have to strictly follow Mesothelioma patients. Think about who and what you choose to follow as a guide. Take what you like and leave the rest behind.
Whenever one starts or stops blogging it is usually for a reason. Often it is the easiest way to keep family and friends involved about the person’s progress. It allows patients to say it once and not have to field numerous phone calls or say things numerous times. Caring Bridge is a familiar web site to many where daily journaling can be formulated and readers can post their love and concern for you.
We all know what kind of illness this is and how much it can take out of you and your family. Like most illnesses, it can be mentally draining. If you try one of these tactics possibly it will give you some mental relief.
– Lisa
We all know how important clinical trials are. The FDA has approved Yescarta (axicabtagene ciloleucel) Although this is not directly affecting Mesothelioma yet, we believe there is hope. Yescarta is the newest treatment for adult patients with certain types of large B- cell lymphomas whose first line treatments have failed, or relapsed. This is the second gene therapy approved by the FDA. This approval came after a multicenter clinical trial of more than 100 adults who had relapsed or did not respond to initial treatment for large B cell lymphoma.
Mesothelioma is a disease that has no cure but has lots of treatment options. Unfortunately, those options can run out and comfort and quality of life is what we are left to focus on. That is not a bad thing but it is not what we had hoped for. Talking about dying is one of the most uncomfortable topics that I know of. Death is the last phase of life and we are all going to be faced with it. I recently received a phone call from a patient telling me that her loved one was weak, frail and she was not sure what to do. She thought if she took her to the hospital she possibly would not be able to come home again because she thought the end was near. Although her caregiver could not say that she thought she would die she said everything but that. We are so filled with fear when it comes to death. As we progress in our lives we know that we will all age and be faced with this transition.
Mesothelioma is difficult to deal with and the struggle can seem insurmountable. Although the journey can be daunting, this is your disease and your life that requires your effort to make it through. Recently I came across a patient who have used the “Five Wish Document”. This is a guide that directs patients to express a plan of care at the end of life. Whether you have Mesothelioma or other diseases it gives you control and a platform to tell people, including your family and medical team, what you would like.
