Once I quit my job due to my constant gastro-intestinal problems, I came back to Honolulu, hoping to enjoy my remaining years. However I soon discovered that the source of my gastro-intestinal problems was peritoneal mesothelioma, a malignant cancer that affects the lining of the stomach. Since I was correctly diagnosed the treatment for mesothelioma started immediately in the form of surgery, radiation and chemotherapy. The reason for the correct diagnosis was due to my active role along with mesothelioma specialists such as doctors, nurses, dietitians, nutritionists, counselors and therapists.
Asking the right questions
Doctors and specialists are usually in a rush. They are no Grey’s Anatomy doctors in real life where they will take out the time for you and sit and chat with you. So in order to make the most of my appointment times, I would take my daughter along, who is a very smart kid by the way for someone who is only 15 years of age, she would help me in asking the right questions. I would jot down all my queries on a piece of paper and then bombard the doc with them.
For instance I wanted to know all about peritoneal mesothelioma that included the meaning of peritoneal and mesothelioma. What treatments are available for it and which ones would suit me. I asked the mesothelioma expert the reasons for getting this awful disease and what could I have done to prevent it. Also if it was hereditary as I was really worried if I would pass on the disease to my children. No matter how silly and naïve my questions were I still asked them without any fear. It did help though that my doc was caring and understanding. There was a reflection of Gray’s Anatomy in him. He gave us a lot of brochures and website links so that we could read up on the disease and research about it over the internet. My daughter who is an internet junkie did a lot of research and came up with some interesting information.
Caring nurses
The nursing staffs that took care of me were pretty neat too. They had a lot of knowledge about mesothelioma as they dealt with it on a very human level. They answered my queries with gentleness and sensitivity. This way I and my family built a healthy and strong bond with the nursing staff at the medical centre where I was being treated for my condition. They took care of our little and major concerns. They helped us get to know other mesotheliomic affected patients. That way it didn’t feel as if I was the only one in the world to get the disease.
Dealing with the emotional side of mesothelioma
This disease called as peritoneal mesothelioma took an emotional toll on me. Often I would feel depressed and worried about my children’s future. I would ask questions to God why me? I was a god-fearing person and a regular church-goer and this terrible disease had to happen to me.
My children would sometimes breakdown as it was really hard on them to see their father was so sick. Although we did try to put on a cheery front but it was hard. We were thus referred to counseling and therapy to help us in dealing with these emotions. |
My wife was given anti-depressants to deal with her condition; while the rest of the family was asked to pray and meditate and get their required amount of sleep. Initially we felt it was a waste of time and money. But our nurses and doctors encouraged us to go the entire way and we are glad we did as positive effects became noticeable and I felt that the family was coping well with the overall situation. Plus they all took turns in visiting me and in doing household chores, that way the burdened eased off and it didn’t pressurize a single person.
Food issues
The chemo sessions were terrible and I could barely put the food down. I lost too much weight and too much hair. It was critical for me to have a certain amount of weight in order to continue with the treatments. So the nutritionist came up with a meal plan which included vitamins, carbs and proteins. I was put on a clear liquid diet during my chemo sessions and radiation treatment. Then when I would feel slightly better and was able to hold down some amount of food, I was put on a soft food diet which included breads, cereals, juices, cheeses and certain fruits.”
- Names of people have been changed to protect their privacy
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