Hi out there.
Some folks (my daughter in particular)have wondered about my progress so I have tried to summarise our situation to date.
My decline in stamina has been gradual, if you think of weeks as gradual. I do not wake up one morning incapable of doing things. The tumor is growing in size so I cannot bend over to put on my shoes and socks. In fact it has become so large that I am no longer symmetrical. My right side bulges out a couple of inches more than my left.
I find I am good for about a 90 minute activity (visit, meeting, etc.) before I begin to feel that chronic fatigue syndrome. On occasions I can push a bit and hang in if folks are here, but most recognise my limits. We go to the church forum, but I cannot last the next hour of church. I feel best in the morning, so I am typing now. Keyboarding is strenuous since I make so many mistakes.
I keep busy every day and do have moments of serenity. The problem is the little irritations and minor pains are not conducive to the relaxation that comes with the feelings of serenity.
I still get up each morning, wash, dress and get ready for the day. But it takes a little more time then it used to and I have to rest a while when I am finished.
We are doing better at managing the pain associated with the feeding tube. Our new nurse, Stacy, has come up with some ideas to alleviate the burning pain that has developed in the area where the tube enters the stomach. Stacy is turning out to be a first rate nurse and has made our dealings with hospice (supplies etc.) much more reliable.
I think I have a few months before I have to move into Hospice housing and we will give you plenty of notice. We talked about that with the social worker last week so we are all up to snuff on those plans. Margaret, the hospice chaplain keeps me working on my celebration plans. Bob Christopher is finishing up a DVD with pictures and music, Stephanie is getting my professional stuff in order, publications, Vita etc. for display and I am making up a short music list that will be independent of the DVD. I plan on starting off with Sentimental Journey by Les Brown and Doris day, followed by Take the A train by Duke Ellington and I am working from there. Maybe Sinatra doing My Way. I am open to suggestions.
I try to live each day to the fullest of what is available. Some days are better then others.
All in all I am going well. We have an apple tutor coming in once a week to help us with our computer issues, a group of four folks from the church (UU) are meeting with us on Thursdays at 1:00-2:30, and I get to a Saturday morning AA meeting. I have been working on my AA story, it is going slow, but I have polished up the summary.
I am beginning to wear out, better send this now