However we pronounce it, why do we run away from the concept of palliative care?
Probably because for most of us, palliative care is associated with hospice, an idea we would also like to avoid. Most families wait and wait to call hospice, until their loved one is clearly dying, even though they could have been receiving hospice services for the last six months or even one year of life, depending on the hospice program they contact. (I have a note in my end-of-life paperwork instructing my sons and friends to call hospice EARLY. Let's take advantage of those services.)
BUT, as the Cheeky Librarian points out in a recent post, palliative care is not just making dying cancer patients (and people with other diseases, of course) comfortable in the final days and weeks of their lives. Palliative care is also intended to help manage symptoms and side effects--no need to list those here, we're all plenty familiar with them!
In her post, she links to a story from the Washington Post about a national scorecard that ranks palliative care across the country, and she also gives the link to check out your state. Good information to have.
Here's the link: Palliative Care Scorecard
Jack and Jill
The Cheeky Librarian also blogs about the Jack and Jill Late Stage Cancer Foundation, which offers "memory opportunities" to the children of parents who have late-stage cancer with limited life expectancy.
I don't know about you, but I was busy making memories with my sons long before my cancer was diagnosed, and I've kept it up since, but it would be nice to have someone else pay the bill for that once-in-a-lifetime trip. However, my sons are 18 and 23 now, so I expect we wouldn't qualify.
Those of you with younger children and advanced cancer, here's the link to Teri's post: Jack and Jill
Oh, and here's the link to my big ("memory opportunity") train trip with Younger Son: Home Again, Home Again
Scan Dance
In several posts that Teri, the Cheeky Librarian, wrote over the past weeks, she used the term "scan dance," which I love and which I am officially adding to my glossary of cancer terms. See: Language of Cancer
Teri, who has an incurable cancer, has to have tests and scans whenever she has pain or another symptom that cannot be explained.
Here's part of what she wrote:
I have entered into another period of 'scan dancing' - that special time in a cancer patient's/survivor's/fighter's life when you get the concerned look on the doctor's face during a checkup, and they refer you to a scan to check things out further.
After the dances I was put through in 2006 when they were trying to determine what had invaded my left cheek (mumps? lymphoma?), then again in 2007 when I was trying my best to grow a unicorn horn out of my radiated skull over my left ear, you would think that I would be used to the rhythm and be able to glide along, tra-la-la.
During the day, I think I manage the steps well - I am productive, and am keeping up with duties at work. I drive vehicles, navigate traffic, purchase items, laugh at tv humor, and can attempt higher math problems. But outside of those 8 hours where my time is the boss' and my customers', I am a wreck.
I haven't been able to be productive on projects at home and on my own computer. I can't even do well emailing friends at the moment. I have scheduled my crying times to coincide with showers or when family members are out of the house ...
Yup, that all sounds familiar. See my category Meltdowns .
Click here to read the rest of the post, but I'll give you the good news right up front: no cancer was found during Teri's latest round of scans. Now she just has to recover from the scan dance. Love ya, Teri.
@ Jeanne Sather 2008.
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