I usually got the infections first, so my oncologist loaded me up with antibiotics and off I went. She knows that not going would cause such a depression that I would be worse.
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
I was at lunch with several friends, including one who had gone on a cruise with me. Two of the others asked me, “Why, with cancer, would you go on cruises where there are so many germs.”
My friend, Ruth, answered, “Because she can take a nap when she gets tired.”
I looked at the people who had asked a very logical question. I explained that Ruth was correct. I also stated that I had a close friend who had been diagnosed with the chronic disease of multiple sclerosis. She had actually found out she had this illness after a severe upper respiratory attack, although she most likely had the disease for many years and this exacerbated it. She and her husband decided to only go out during the week when the stores were not as busy, and not to mingle with others since the fear of getting sick was existent.
I told these people who were concerned about me that I have made this decision on purpose. I can stay home, try not to go out, be afraid of getting an infection and possibly live longer. I would also be miserable.
Alternatively, I can go on cruises, take a chance and live my life joyfully.
I have gone on three cruises since I found out I have cancer and was stricken with an upper respiratory infection on two of them. However, other people on the ship also got sick. I usually got the infections first, so my oncologist loaded me up with antibiotics and off I went. She knows that not going would cause such a depression that I would be worse. There is always a ship doctor, so it was not like going off to the wilds of Africa. I know my blood counts are so low I am prone to infections, but can also get those at home! And I love all three of the places I went!
It sounds like I am reckless, but I truly am taking calculated risks. My oncologist has been very firm that I am not to visit anyone in a hospital or nursing home, just send them a card! If my friends or family are ill, they know not to go out with me. I try to get enough sleep to stay healthy and am able to go to bed anytime on a cruise. The minute I feel ill I start on antibiotics and contact my doctor. I really try to monitor my body carefully.
I realize it is more likely that I will get an infection that causes my death than the cancer. Many people with myelodysplastic syndrome pass from other causes weakened by the initial disease.
My friend who has chosen an alternative and stays home is an admitted homebody. She loves her home and being there and is not the social creature I am. I would never judge another person’s choice, and know it is none of my business.
What each and every one of us who is suffering from a disability or chronic disease has to do is calculate the risks we are taking. Some people throw caution to the wind and expose themselves to everything. The other extreme is to stay at home as much as possible.
There are those of us in the middle (like me) that show some caution, but do fun events when we can. Before I became ill, I would travel to foreign countries, fly standby, go out all the time and get little sleep. But I never drove my car at 100 miles an hour or took other dangerous chances. I do not go into hospitals or where I know there are sick people, but I do go on cruises where I may or may not become ill.
After any chronic disease diagnosis, every one of us is calculating our risk, throwing down the dice or playing a deck of cards whether we do this consciously or subconsciously.
The important thing is that we are comfortable with those choices. We also need to make the decision along with our families and others who will be impacted. So, it is up to each of you whether you are going out or staying home!
Just be sure you enjoy every single minute you are given.