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mesothelioma journey

The Journey Can Be A Roller Coaster

Lisa Hyde-Barrett, RN Mesothelioma NurseThe journey with mesothelioma can be a roller coaster of highs and lows both physically and mentally. Many times, we hear families, loved ones, or caregivers say that the patient was not in the state he or she was in before their surgery occurred. It is important to know that as someone undergoes treatment for mesothelioma, so much happens physically and emotionally and change should be expected. The physical portion most people can easily understand, they can see the pain, the scar, the tubes coming out of different parts of the body.

The emotional part is more difficult to understand. This disease has forced the patient to face their own mortality. They are now reliant on people to help them with everyday skills, a task that can be a lot to take in. As you walked into the hospital, it is unfathomable to think that you are going to get out the way you came in. Not only are you dealing with major surgery, but now you have been robbed of your independence.

As you progress through your recovery and eventually home, the reality sets in that you have mesothelioma and the fight must begin. How are you going to move forward, get back to where you started? This time can be quite emotional, and if you have family or friends helping you this may be quite beneficial. I actually saw people recover independently at a rehab but that too can be a rough road. It can be done, but it seems as if that makes it more difficult not to have support to help.

As you sit day to day and mentally feel down, the recovery moves forward but it may not seem fast enough. A good idea could be to keep a journal of your activity, mood, physical appearance, and weight. Most people have smartphones that you can take a quick photo each week as you progress through your recovery. A scale is an easy device to monitor your weight and encourages you to eat healthy. Your activity can be easily monitored if you keep the same route. You can jot down when you go beyond your previous walks, or jot down how many flights of stairs you took that day. All this information can be helpful, but I suggest that it be reviewed once a week as checking day to day may seem too daunting. As you are tracking your progress, try to scale your overall mood for the day, maybe use a numerical scale that is from 1-10. One could be just a lousy mood, frustrated, pain, etc. and ten could be a mood of joy, gratitude, happiness, etcetera. All this information can be helpful when you are able to reflect that you are making progress while you may still experience feelings of frustration.

Recovery from mesothelioma can be difficult, long and hard. Try to surround yourself with positive people and don’t beat yourself up. Remember we all only have today and allow yourself a bad day now and again. When the good and great days come be happy, celebrate and share with others. The journey has begun and now you have a say of how it will move forward.

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