For this blog post, I thought I would share the answers to some frequently asked questions. For those who have wondered, and for those who maybe were afraid to ask some of these questions, I am more at peace and able to talk about this whole hospice and preparing to die thing.
QUESTION? What is hospice? I thought it was something people had right at the very end of their life?
ANSWER: A person can have hospice once their life expectancy is 6 months of less. The benefit to having hospice care start sooner rather than later is they can do a better job at pain management and making your last days, weeks, or months as easy and high of quality as possible. The doctor comes to your home so you don't have to drag yourself out to a doctors office when you are feel terrible. They bring your meds to you, and know right what to give you to help with whatever is causing you pain or discomfort. Hospice also offers emotional and spiritual help with a counselor and a chaplain if needed, They help the patient and the family. My nurse is so kind and caring. She is great with the kids, and always checks up on me, and visits a couple times a week.
QUESTION: How are you REALLY feeling?
ANSWER: I REALLY am feeling pretty good, and a whole lot better than I thought I would be when it was time for hospice. I am really tired. It is a different kind of tired. I sleep really deeply for long periods of time. I go to sleep at night, and then sleep until 11am-12:00pm. A good solid 12-14 hours. Once I wake up for the day, I am up for most of the day. I occasionally need a nap late afternoon or evening. My pain is honestly managed wonderfully. I have different meds for each of the different kinds of pain I suffer from. It is truly amazing how well hospice doctors and nurses are at finding the cause of my pain, and treating it. I am also doing really good emotionally and spiritually as well. Like I said in my last post, I truly am at peace. So I am doing better than I expected, and when I say I'm doing pretty good, I really am pretty good.
QUESTION: How long do the doctors give you?
ANSWER: My oncologist gave me 3 months to live back in the middle of April. So if we were going by the Oncologist's prediction, I only have a little over a week. So unless something completely unexpected happenes, I can safely say that the oncologist was wrong. (THANK HEAVENS!!) However, according to my hospice nurse, I am doing way, way, better than they thought I would. I am still able to eat, haven't lost any weight, and still am awake for about the same amount of time as I am sleeping. Dan and I are planning on a cruise on July 16th kind of as a celebrating that I'm still alive kind of thing.
Seriously, though, I have no idea when I am going to die. We hope that I make it through the summer and to my 31st birthday which is September 15th. I don't know when I am going to die any more than YOU know when you are going to die. All I know that it is going to be a whole lot sooner that I would have hoped, even though I have survived terminal IBC cancer way longer than the statistical 6-12 months. It has been over 2 years that I have had stage 4 terminal cancer.
QUESTION: What can we do to help?
ANSWER: Our physical needs are being met so well by family and friends, it is hard to ask for more help. Prayers are always needed and welcomed. Whatever you may be feel prompted to do is probably the best thing to do to meet a need, So many times our need are met without us even asking for help. P.S. Chocolate is the best medicine! (Only half kidding..... LOL)
QUESTION: Can I come visit you?
ANSWER: I don't get out of the house very often, so I love to have visitors. I do sleep a lot, and some days I don't feel too great, so we ask that you call first, and we will let you know when a good time to visit would be. And if you are feeling under the weather at all, please don't share germs. Wait until you are healthy to visit.
So, there are the answers to a lot of questions that we receive.
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