Officially in Hospice Care now
Sunday, September 20, 2015
I had what might be the last appointment with my oncologist Friday; I'm still officially a patient, but for now, there is no purpose for him to see me once per month since I am no longer in treatment. (I'll still be under the care of my family doctor, my internist, of course.) He will be communicating with my hospice care workers, and if they feel I need to see him, they will arrange it. Anyway, at the end of my appointment, he gave me a big hug, then kind of hurried out of the room. I know it can't be easy for him to say "goodbye" to patients either.
He is also discontinuing the Halotestin injections, as he feels they are no longer working for me. I knew the day would be coming when I wouldn't be seeing him regularly, but it was still emotional for me; he's been my oncologist for about 12 years now. I'm also going to miss all of the staff I've had contact with at the cancer center. Of course, I can still call them if I need something they can help me with.
Friday afternoon, I officially enrolled in Hospice. One of the nurses came to my house, and my 2 best friends, Penny and Denise were there too. I don't necessarily look at hospice as the "last step" of this journey, but rather something to make my life easier now, which should make my quality of life better.
One of the ways in which things will be easier is that now I can get the blood draws for my weekly blood counts done here at home. They will also have my pain meds and any other meds relating to the effects of the cancer delivered for me. I'll be able to get a folding wheelchair that can be stashed into a car in case I need it and I am somewhere where electric carts are not available (not all of the stores in my area have those, or even regular wheelchairs, available for customers.) I'll also be able to get oxygen to use when I need it.
And being in hospice care, that does NOT mean that I am bedridden, or housebound. In fact, they encourage their patients to live their lives as normally as possible. I can still get out and do things on my good days if I want too.
Since my hemoglobin was down to 9.0 last Monday, my oncologist was pretty sure, without feeling he had to check it, that I was probably down low enough to be needing a transfusion when I saw him on Friday, so he ordered one for me. There was a big screw up made somewhere; I asked to have it done at the local hospital here in my town, instead of the one in the next county over near the cancer center, and my oncologist said that would be fine. The nurse that scheduled it and gave me the time that I had to be there (9am on Saturday, which was yesterday), also told me it would be at the local hospital in my town.
I had a friend drop me off at the hospital at 8:45am yesterday, only to be told that they did NOT get the orders, they were sent to the other hospital! Bless her heart, the lady from registration tried her best, but they would not transfer the orders to my hospital. I had to go to the other hospital to get it done. I didn't know what to do, and it was too short of notice to find someone to give a ride to the other hospital. Finally, a supervisor at the hospital said they would pay for a taxi to pick me up and take me to the other hospital, but I would have to find a way home (thank God Denise said she would pick me up when I called her.) Anyway, it was 11am by the time the taxi got me to other hospital. My blood did not get started til noon, so it was after 5:30pm by the time I got back home. A very long day for me, but I'm glad I got the transfusion done and I am feeling better today.
Hospice is going to have my family doctor order any future blood transfusions (he had not ordered this one, because my oncologist had ordered it and it was before I was signed up with hospice); since his hospital privileges are only at the local hospital here, I won't have to worry about anymore mix ups like that.