Balancing living with mesothelioma over time and living day to day with mesothelioma is a challenge. Living with Mesothelioma at times can be frustrating. Many people question and critique their progress daily or even sometimes hourly. It is important that you pay strict attention to your overall health and stamina, but when is it too much or not enough? The patients that we see after initial treatment are often in their homes or local hotels, rehabs, or staying locally near a mesothelioma center. There is a wide variety of expectations after this initial hospitalization. For some they keep logs of weights, medication, and lists of fluids and food that they have consumed. This can be helpful with accuracy and to stay ahead of changes to a situation. For others they are more accepting of symptoms that can be improved on. It is a balance that every person has to find.
Two examples that come to mind are a patient that had logs for his weights, charts for his meds, diaries for his food intake – all was going well in those areas. Sleep was an issue, and became something that he focused on. He realized the one area that he had not put enough emphasis on was walking. Ambulating is very important and could help improve his sleeping, and so balancing these activities helped him recover.
Another patient had no energy, was dizzy, and blood pressure was low. He expected that he should feel bad and thought this was just how it should be. He did not reach out to his mesothelioma team. Adjusting his blood pressure meds improved his energy, appetite, and outlook.
When is there too much focus on something? There is no easy answer to that. Many times, we see patients and families who are hyper focused on one thing. Sometimes it can be weight, pain, shortness of breath and they constantly talk about it. How do we refocus on life and not so much the disease? Professionally speaking we try to focus on something else, preferably something positive. Maybe if someone is focused on lack of sleep or shortness of breath, we try to engage the patient about mobility. We concentrate on the value of ambulation, how it builds endurance, strength, promotes confidence, and overall is good for you. We encourage them to measure their distance and how they felt after each outing. This can sometimes work in a favorable way and it can encourage people to push themselves and not focus on the other stuff.
As you enter the world of mesothelioma you may hear that this disease can also affect you mentally. Many patients previously have chosen to focus on being a warrior and not a victim of asbestos. This is not an easy task to do day to day. It takes practice to incorporate this mindset into your daily life.
Physically we all know when something feels different out of our norm. We are quick to pick up if we are coming down with a cold, or we have bruised a bone. If something does not feel right you should let your team know about it.
Seeking and undergoing treatment for mesothelioma is a challenge. This is about taking the disease by the hand and taking charge of how your recovery will go. Controlling what you can and letting go of what you can’t control will allow you to work with your team for the best possible results.