Palliative care is about LIVING!

Everyone always says the same thing AFTER they the find out the difference between palliative care and hospice: “My [insert family member] would have really benefitted from palliative care HAD WE KNOWN THAT…[insert numerous palliative benefits here].”

The goal of palliative care is to improve the quality of life while one is dealing with a serious illness.  Note: I didn’t say while someone is dying. Palliative care is not about death or dying!  Even though my mom was on the back end of her fight with lung cancer (though we didn’t TECHNICALLY know that)…she was still alive! She was still living!! What she needed to know was how to LIVE with a difficult fight with lung cancer.  What we knew was that she was still mentally coherent, but daily activities were difficult for her. Even though she was still reading her daily Bible studies, opening mail and taking car rides, it was getting harder and harder for her to do those simple tasks.  All she really wanted and needed was someone to explain what was happening to her. She was fearful and the fear fueled her anxiety.  She didn’t necessarily need or want anti-anxiety meds, but they helped a bit. What she really needed was someone to talk to her, show her how to cope, show her what was happening to her body.  She needed someone to help her figure out how not to get frustrated because she couldn’t do simple things.  My mom needed to understand the why.  When you don’t know what’s happening to you, it’s hard to figure out what to do. Lung cancer is sneaky and you don’t know how quickly things change. Every day mom woke up to something new that was affecting her quality of life.  Palliative care would have helped her cope with those daily changes.

To me, palliative care provides peace of mind, for the patient and for their family. Palliative care helps control symptoms, offers solutions for dealing with depression and provides long-term options for handling issues specific to a particular illness.  Palliative care can be tailored to an individual’s specific need and it can be offered along with curative care. There are several individuals involved in providing this palliative care, including primary care physicians, therapists, chaplains and social workers. They work together as a TEAM.  A team approach is necessary because unfortunately, one primary care physician just can’t do it alone, nor does he or she have the time to do it all.

I’m sitting here thinking about today’s lung cancer social media chat on Twitter (#lcsm) and remembering the first conversation we had with mom’s doctor about palliative care.  As we were trying to come up with a plan to help deal with mom’s pain (back pain, shoulder pain), her doctor said we could do palliative and hospice care, but that’s about it. What did that mean? Palliative AND hospice care? How does that work? When you don’t know the difference between the two and one of them you’ve never heard of, how can you make an informed decision??  Who teaches the teacher? Meaning, who tells the doctor how to tell the patient?  It wasn’t just about the pain.  Many of us don’t know what we don’t know. And we knew NOTHING about palliative care so therefore we didn’t know what to ask.  Just like insurance, no one talks about it until you need it and many of us walk around as if we’re invincible.  Let me tell you something, life happens to all of us…from cancer to major surgery to chronic diseases.  What we need is a way to deal with it, a way to handle it.  Palliative care does just that; it helps you to continue living.  No one wants to struggle to live. Palliative care helps remove the struggle.

 Join our lung cancer social media chat on Twitter tonight, January 16, 7 p.m. CST. We’ll be talking about the basics of palliative care.  Don’t miss out on an opportunity to learn more about something that benefits all of us, regardless of the illness.

Finally…We’re Getting Somewhere! I’m Feeling Optimistic!

Do ya’ll know how excited I am?  

Last week a few of us who have been affected by lung cancer participated in a lung cancer chat on Twitter (hashtag lcsm).  Despite the subject matter,  the hour-long chat was the most exhilarating, eye-opening, positive discussion I’ve participated in thus far.  It was the first Twitter chat I’ve ever ACTIVELY participated in, though I’ve been a lurker in numerous other kinds of chats.  This lung cancer chat was different because it affected ME personally.  Many Twitter chats of all subjects serve as a place for others to share knowledge and discuss current trends or events.  But this one about lung cancer hit home for me and oh how I wish this has been around when mom was first diagnosed.  But we can’t go back and change the past.  We can only look to make it better for others going through the same thing she went through.

None of us on Twitter like the fact that we have been brought together by lung cancer, but I know all of us are glad to have ‘met’ each other because now we don’t feel so alone.  At the end of the day, we all want the same things: to eliminate stigma associated with lung cancer so we can get more funding and increase research opportunities to help eradicate this disease.  And that’s just the tip of the iceberg!

If you or someone you know has been affected by lung cancer, we encourage you to join us on Twitter by following #lcsm.  And if you don’t already have an account on Twitter, you need one!  As I tell most folks joining Twitter for the first time, your experience is only as good as the folks you follow.  It is a very necessary tool in the healthcare and cancer communities.  And if you follow #lcsm, you will ultimately discover a lot of great folks to follow on Twitter. If you’re mildly interested, check out my Twitter stream to the right of this blog; I tweet about everything from healthcare and cancer to current events.

But I’m optimistic that we’re finally getting somewhere in terms of increasing awareness.  We just want attention!

 Below are a couple of blog posts that sum up our Twitter chat from last week.

The first one is from Dr. H. Jack West, a medical oncologist and medical director of the Thoracic Oncology Program at the Swedish Cancer Institute in Seattle, Wash.  Dr. West serves as our moderator and thank goodness for him!  He is also the President of the medical education website OncTalk, LLC and the Global Resource for Advancing Cancer Education (GRACE).  If you’ve never visited G.R.A.C.E., I suggest finding some time to check it out as this site provides excellent comprehensive, educational resources about specific cancers.

Lung Cancer Tweet Chat – Cultivating Our Sense of an Online LC Community

This second post is a quick summary  from American Diagnostics Medical (ADM), which provides early detection of smoking-related illnesses.

Top Tweets From Inaugural #LCSM Tweet Chat