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.
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    emoticon Praying for you!
    1754 days ago
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    1756 days ago
    Belated Happy Birthday Shari. I have missed you and as ever, you are in my prayers.
    1774 days ago
  • JANET552
    I'm so sorry you had to go through the troubles for the blood transfusion. I am glad that things will be easier for you with Hospice. That is such a wonderful program, or whatever it would be called. Best wishes!!
    1776 days ago
  • JUDITH316
    Dearest Shari, just wanted you to know I have been thinking of you this past week, especially knowing you were going into Hospice Care and saying goodbye to a special Doctor who has cared for you these past 12 years. Happy you were able to exchange those special words and share a hug, I'm sure it wasn't easy for either of you. even though I wasn't here this week you were never far from my thoughts or from my prayers. I am so happy you had your friend's with you when you met with the Hospice Nurse. I do hope it will make your life easier. It does sound like everything is coming into place. I'm sure it will be easier having most of your care done in the comfort of your own home. You will now be able to save your energies for other things now that you are not having to arrange rides and go outside your home for tests and appointments. You are such an inspiration Shari, no matter what you face you Shine for Jesus wherever you go. Indeed you are a rich blessing in which I thank God...I am so thankful I have a friend that I have in you. God Bless you Shari, my prayers go with you as always... emoticon emoticon
    1776 days ago
    emoticon emoticon ~ Dee
    1777 days ago
    Hi Shari,
    I sounds like hospice is going to make some things easier for you.Good that you don't have to go to the hospital for lab work and refilling prescriptions,especially with the cold weather arriving soon.Being a hospice volunteer~ i know without a doubt that you will be receiving much compassion, love and respect.Thank you for being so candid in sharing your journey with us.You are giving many of us hope and inspiration with your strength, kindness and grace Shari.
    Sending prayers, hugs and love your way. emoticon emoticon emoticon
    1780 days ago
    Wishing you the very best. emoticon
    1781 days ago
    Sending my (Hugs).
    God bless you.
    1781 days ago
    You're right - knowing you likely won't see your oncologist again when you have a 12-year relationship is difficult for BOTH of you. I'm glad you had a chance to exchange hugs, even though I know it was hard.
    1781 days ago
    You are an example of living gracefully in the midst of health chaos. I pray God's continuous grace for you as you embrace quality of life.
    emoticon Jean
    1782 days ago
    I'm sorry your transfusion was such an 'adventure'! I'm glad you are feeling better today!! emoticon
    1782 days ago
  • KERRYG155
    Quality is much more important than quantity. Other than that hospital mix up it sounds like things will be much easier for you. Having good friends is also important and it sounds like you've got the best.
    1782 days ago
    Shari, you have faced changes in your life with such courage and grace. Glad the transfusion made you feel better. (I mistyped "transFURsion" at first so maybe the cats are telling me that they will be working to make you feel better, too!)

    emoticon emoticon
    1782 days ago
    Dear Shari,
    I am so glad you had two friends with you in the meeting with Hospice. It does sound like they will make things more convenient for you and that's what they do best. They always seem to provide the best care possible, and take that load off of your shoulders. You are always in my prayers. I pray that you will continue to have the strength to do and accomplish whatever it is you want to do. You are a very strong and courageous woman. The inspiration and hope you give while taking us along with you on your life journey is so beautiful. Remember, you are not alone on this journey. We are all here with and for you. emoticon emoticon
    1782 days ago
    Dear Shari,

    Overall, I feel having help is a positive thing for you! I am so glad Penny and Denise could be with you when you met with the hospice nurse. They are providing help in so many different ways. Apart from the mix up this last weekend - sorry it turned out to be such a trying day for you - being able to have transfusions closer to home will save some more travel, as will getting the blood tests done at home and medications delivered to you. I am very happy you are getting this support, as well as the wheelchair.

    I can well understand you missing your oncologist and the oncology centre staff, and I am sure they will all miss you too. If the meds you were taking aren't likely to be helping, it will hopefully give your body's system an easier time by having less to deal with. I hope it helps you energy levels to pick up a bit. In any case, not having to go to so many appointments will free up some energy and I hope you might now be able to spend some more time on the things you enjoy.

    Prayers continue for you, and with the hope that everything goes as well and smoothly as possible for you my dear friend.

    Love and big hugs,

    emoticon emoticon emoticon
    1782 days ago
    So glad that things will be easier for you from now on with Hospice. AWESOME!!!
    Continuing prayers, blessings, love and hugs,
    1782 days ago
    Praying for you in this transition. HUGS!
    1782 days ago
    I pray that these changes actually make things easier for you, Shari. I believe it it will prove beneficial for you to have the help offered through Hospice. One advantage is that you won't have to go & do so much away from home in connection with your health care.

    It is a blessing that everything worked out concerning the mix up in the orders for the blood transfusion. I firmly believe that nothing happens in our lives that our Abba Father does not first okay & filter through the nail scarred hands of our Lord Jesus. That said, I am left wondering why the mix up was allowed. One thing seems to be that you showed Jesus in your reaction to someone else's mix up. I admire that in you, Shari. What a good witness to others - both our siblings-in-Christ & those who do not know Him.

    That said, I am happy to know that such a mix up cannot happen again, due to your doctor only working through the hospital nearest your home. Another blessing in that!

    God bless your oncologist & his staff for the twelve years of care they gave to you & the woman in registration who tried so hard to get your orders transferred!

    God bless you, Shari, as you continue to live for Christ!
    1782 days ago
    1782 days ago
    It sounds like your life will be a little easier now! Always remember that you have the best doctor in the world-Jesus Christ!!! God bless you, my friend!
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    1782 days ago
  • DREAMS1967
    Hospice is a wonderful group. We had them for my parents and mother in law. They greatly increased their quality of life and were there for help and support for our parents whenever they were need. Being off some o f those meds will make you feel better. God Bless you
    1783 days ago
    It sounds like The hospice will make things easier for you.

    1783 days ago
    Shari, I am hoping to hear you are feeling a little more energetic, now that you are off some of the meds. I am sure Oncologists have a very stressful job, just by it's nature.
    You now have a personal assistance, in Hospice. They'll handle many things, that used to stress you out. You are a very strong, independent woman. Be sure to reach out to them, for anything you need.
    I am so glad Penny & Denise have been with you.
    As always, Hugs & Prayers.
    emoticon emoticon emoticon
    1783 days ago
  • no profile photo CD5707126
    It actually looks like things might be a little easier for you now without having to travel and worry about getting to so many places. My thoughts and prayers remain with you and prayers for a few extra spoons. emoticon
    1783 days ago
    Sounds like you are going to have treatment a whole lot easier now which is truly a blessing. What beautiful friends you have. Sending you loving hugs. Pat
    1783 days ago
  • PHOENIX1949
    1783 days ago
  • FLRED12
    It sounds as though Hospice will make your life easier. You are in my thoughts and prayers. emoticon
    1783 days ago
    Keeping you in my thoughts and prayers! You are an amazing woman!

    1783 days ago
    Shari,I am certain Hospice will give you the care you need.Also
    thankful to hear your Friends will be there for you as well and
    all of your spark friends will keep you in thoughts and prayers.
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    1783 days ago
    You have been in my prayers since we met via SparkPeople. I will continue to pray for your comfort and your bravery. You are so amazing!
    1783 days ago
    1783 days ago
    i am sorry that you are dealing with this but also glad that you will be taken care of.
    1783 days ago
  • PICKIE98
    So many convenient things to offer you. Take advantage of them. The Rx delivery is great.. no more going out in the rain and snow, especially when your counts are low. You can pick and choose when you ant some fresh air and actually PLAN your outings!!
    Less chance for germs to be near you especially for flu and cold season!!

    1783 days ago
    I'm hoping that these new changes will make things easier for you. I'm also glad that Penny and Denise were able to be there with you. You also have many Spark friends here wishing you the best. We're sending prayers and gentle hugs.

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    1783 days ago
    I thought of you several times on Friday; I'm sad reading your blog, but am always amazed by your spirit, tenacity, kind heart and endurance. God bless you, Shari, and sharing your journey is very much appreciated. You are a special human being, for sure.
    1783 days ago
    You are in my thought and prayers at this time.
    1783 days ago
    Was so glad to see your blog, Shari! I was thinking of you knowing this was a big step and change...and I don't know about you, but I am not great with change! It sure sounds like you did well, although I know it can't be easy! Saying Good Bye to a Dr you have seen for the past 12 years is a big deal, even if it means you are moving on to something that will work better for you and make life easier! I have learned in the last few years that Hospice is not that "ending" thing as we used to think of it, but certainly includes the service of making life easier! You now have a coordinator to assist you in getting
    what you need in the easiest way possible! It sure takes away so many appointments you have had to arrange, get a ride and spend, sometimes a day, getting what you need done! This is a good thing! I am glad Penny and Denise were there with you and supported you in the decision!
    You remain in my thoughts and prayers! Thank you for sharing your journey with so many of us here who care about you! You know you have our love and support!
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    1783 days ago

    Comment edited on: 9/20/2015 11:26:24 AM
  • RKT1965
    Big (((hug))). Thank you for sharing your journey.
    1783 days ago
    My father was in hospice care for awhile also. Those people are great. The doctor ordered a psych nurse for me. If you need someone to just let me know. I will be praying for you and I know things will be okay. My heart goes out to you.
    1783 days ago
    Thinking of you.
    1783 days ago
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