First Hospice Visit


Yesterday afternoon Christy & I had our first visit from Hospice Care. I must say, they are really good at doing a really difficult job. We were able to get a grasp on the services they offer and then tie that into things that are important for me and our family right now.

Quiet afternoon on the Lehigh River
A quiet afternoon on the Lehigh River

First, it is clear that their number one goal is to make sure that I am comfortable and receive whatever care is necessary to stay comfortable regardless of how the disease progresses. They have an amazing nursing and medical team that’s available 24 hours a day and are committed to making things easy for us to manage.

Second, it was assuring to see that they are also available for my whole family for everything from information services, to compassion, and to managing the very practical things that need to be addressed in the coming weeks and months.

Third, it didn’t take long to realize that if I’m not on chemo, this team is much better equipped than my oncologist to manage my medical care in a way that is more targeted to the decisions we’ve already made. For instance, instead of running countless tests that produce more and more lab results, charts, and statistics, their focus is simply on, “How do you feel today, and what can we do about that?” I’m already sensing that this reduces my worry. Since my test results are generally much worse that how I actually feel, I think it will also help keep my mind focused on what’s most important: living and finding joy in each day.

They also reassured us that Hospice is all about receiving proper care. It’s not a path to death, and many people receive Hospice for a while, and then recover and go off their services. There’s a lot of flexibility here.

All in all, we feel quite confident that we’ve made a good decision in contacting them.

Lastly, people often ask what they can do to help me out. The answer is quite simple. Let’s not wish away this valuable time by wanting things to be different than they are. I’ve spent a year researching options in and out of the medical system, and in and out of the country. I’ve had multiple doctors, naturopaths, alternative care specialists, and counselors all come to the same conclusion. Short of an absolute miracle, things aren’t going to change. So while we all have faith that miracles can still happen, this too is completely out of our hands. What we can do, however, is use this time to be close, sit and visit together, and do simple things that show respect, care and compassion. Just as it was in the beginning of this journey, short visits are so important and meaningful. Honestly, nothing sucks more than having terminal cancer, than having terminal cancer and spending many precious hours alone. Companionship is always appreciated.

That’s about it for now. Thanks for listening, and God bless!

 

8 Comments

  • Dominique

    07/12/2016

    Thanks for the update Sandy. I added you to my prayer list. I’m believing for those 15 years your heard God say you have. 😏

    Jeremiah 17:14

    Reply
  • Mary Ellen Antonioli

    07/12/2016

    You are so positive with your life choices. I admire your courage and only pray for that miracle. You are such a special person and I love your family. Be blessed and live for the moment. None of us know when He will call us home.

    Reply
  • Donna

    07/13/2016

    Sandy you are a complete inspiration to me. Thank you for sharing honestly with us about what is happening to you and how you feel. You are a miracle to me.
    Much Aloha. Donna

    Reply
  • Pattie

    07/13/2016

    Sandy, your writings about your journey put the “realness” and humanity into the process of the fight. Your grace and courage are unbelievable. I don’t think I would not have the clarity and dignity you do! Fuck cancer. Nope – do NOT excuse the language. ❤️❤️❤️❤️

    Reply
  • Sally Dehne

    07/13/2016

    The Lord has filled up my heart with love for you and your family. May He answer your prayers and give you the assurance of His presence. We are together in our love for our Saviour. We are family, always. Sharing your journey brings us along with you to reconciliation and confidence in the One who gives us hope. Each new day my expectancy grows in the Lord that He’s coming back. And as believers, our true comfort is just around the corner: being in the presence of the Lord and in perfect fellowship with all the saints. Hebrews 12:1-3 speak to encourage our hearts in His love. Praying that today you will know how much good God is doing through you. Sending hugs from San Diego, Sally

    Reply
  • Marie Limmer

    07/13/2016

    Thanks for the up date. Gloria Kelley and I were praying for you on our walk this morning.You and your family are always in my thoughts and prayers.Only wish we lived closer.Love you all.

    Reply
  • Pat and Barb

    07/13/2016

    Barb and I are praying for that miracle too. It can happen, we will always love you and the family. Keep praying.

    Reply
  • Gayle

    07/13/2016

    Sandy, people in the Hospice movement are truly angels on earth. I’m glad you all found each other. I’m grateful to you, Christy and your family for sharing your circumstances so honestly. You are helping more people than you could ever know. Bless you and may every single day be a good day in some way.

    Reply

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