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.
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!