Wow. Where to begin.
I am enrolled in Hospice and that often is a foreboding word,
so I thought I would explain a little bit about the services provided, which are
so much more than I expected. As I anticipated, they will deliver services to
me here at home as long as I am able to live here. Fortunately, if the need
arises, I can transfer to assisted living, which is just down the hall from our
apartment, and Hospice will supplement any needs over and above those provided
by Bell Trace. I get a weekly massage—my
first being today—and, though I knew my shoulders were tense, I didn’t realize
how tense until the massage. I fell asleep before she left!! I have a traveling
wheelchair courtesy Hospice, and I am probably safer in a chair than on the
rollator now. Ralph and I meet with a social worker tomorrow and I will be
visited weekly by an RN.
Well. First of all, I am comfortable with no need for pain
easement. I am seven weeks after my last infusion and there are a few intimations
of my mortality. Small changes in the “gyring” of my inner gyroscope, shortness
of breath, headaches and, of course, the blasted fatigue—there are so many
things I still want to do!!! I had hives for a few days after Dr. Dayton broke
the news, and still find many spots that need scratching from time to time.
Occurrences of burning mouth more frequent, weight dropping rather
dramatically, and some chest pains—none lasting very long. Just letting me know
my body is preparing me for the inevitable. Food mainly tastes like sawdust,
and my appetite is waning. I even passed by liver and onions the other night. Not
funny, but I had to laugh when the hospice RN said, diplomatically, “Beth, it
will be OK to use Aleve now before getting into the opioids. It’s only interaction
with deflenac is ulcers.” And so it goes.
I’m keeping busy and Ralph is a terrific helper—I’m still in
an “I’d rather do it myself” mode, and he humors me as he is pampering me. And
I am learning to accept help and say “thank you.” B
Love, Beth
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