I met with a hospice nurse last Friday. The idea in my mind was that I would just get some information on how hospice works, when to start using it, etc, and then I’d go on my merry way. Well, she gave me all of that information and then asked me how I was feeling and what kinds of symptoms I am experiencing… My list looked something like this:
-Shortness of breath and dry cough for the last week, off and on, thought it might be allergies. Took Zyrtec and it did nothing, took Benadryl and it did nothing.
-New lymph nodes, bigger lymph nodes
-Sharp head pains, occasionally
-Sharp pains around rib cage on both sides, very occasional, unpredictable
-Headache several times in the last week, first in a long time
-Ultra-tired, can’t walk dog for twenty minutes 2x p. day because don’t have enough energy to function for rest of day. Walking once p. day, twenty minutes.
-Vision-have had two instances in the last week of seeing a vibrating C shape that is flashing like a neon sign. Can still see it when I close my eyes, is in both eyes; not one or the other. Starts out small and gets bigger and bigger over 15-20 minutes and then goes away.
-Appetite very irregular but usually very small. Occasionally ravenous, usually not very hungry, often feeling full/borderline nauseous.
The nurse said that she would strongly recommend that I go ahead and start hospice care, even though I did try to get out of it by explaining that a lot of this stuff, okay fine, the less dramatic stuff, has been going on for months and months. My Doctor had also suggested that it would be a good idea for me to get a relationship going with hospice. The nurse said that it would be better to start soon and keep symptoms monitored than wait until something dramatic happens and becomes a major issue. The idea is to keep suffering to a minimum. I like that idea.
She said that while the general recommendation is for people to start hospice when it’s expected that they have six months or less left (Insert a smile here, hope that it’s a lot less than six months before Jesus comes for me. Insert a sigh here, nine months ago I thought I’d be long gone in three or four months max), for some people it’s longer and some people do start hospice and then stop.
Anyway, with hospice comes a lot of resources. There’s a nurse, a social worker, a chaplain, the latter two for both the patient and their family, a home health aid if/when that becomes necessary, volunteers….
In a nutshell, the goal of hospice care is to help me be as comfortable as possible physically, emotionally, and spiritually. Quality of life is the priority.
As of right now, my oncology nurse is working on setting up the hospice stuff. I anticipate having a first meeting with a hospice nurse sometime in the next week or so.
Meanwhile, I’m still mobile—I can still move around easily and drive and take care of myself, I can still walk my dog, I can still spend time with people close to me, etc. All of that is a blessing. I can still do all those things; I just can’t do as much of them.
Oh, and last fall I did a lot of reading about the end stages of life, I find that the more I know about it, the less room there is to fear because for me fear is usually of the unknown.
HERE is a post on fear/end of life from last fall.
HERE is a link to all things end of life related—many of the articles on EOL issues are written by people who were terminally ill, including doctors, so it’s fascinating and very helpful. This is the best site I’ve found so far for information on these topics.
THIS article is particularly good.
“….we tend to die in much the same way as we have lived, according to our temperament, according to our beliefs, and much more in control of the process than we may know. Perhaps the suffering of death is more the result of our fear and struggle against the ultimate loss of control…" (Click HERE for article) This article is incredibly insightful. It’s very sad that most of us don’t have this information a lot sooner. I wish everyone could read this.
This information has been very comforting to me. For example, as I’ve reflected on the shortness of breath, I’ve wondered if I could suffocate to death. One of the EOL stories on that site, written by a daughter about her mother, mentions that her mother had the same worry about not being able to breath. The answer: They can give you enough morphine that you won’t know you can’t breathe. That sounds good to me. Now I can cross that off my waste-of-mental-energy-things-to-think-about list.
I’m not quite sure what I think about hospice yet. I’m more than ready to leave and be done with this whole cancer thing. I think mostly I’m not sure I need hospice yet because I’ve had so many weird symptoms off and on for so long. But, the way God has been changing my heart and the extra peace He’s been giving me in the last several weeks makes me wonder what He’s preparing me for… I would say who knows, but He does. I’ve seen Him do stuff like this before.
In His Grip, Martha