Sunday, September 30, 2018

Why did we start our own Lung Cancer Page?

Last week, a few of us took on the daunting task of starting a new lung cancer page.  Now, we didn't do it to step on anyone's toes, hurt anyone's feelings, or anything to that effect.  I had a patient email me that she can't take hearing about one more wife asking how to cope with death of her husband.  Then, in another group, a caregiver made a remark that set patients off.  I know it wasn't intentional.  Neither of them are, but we are fighting for our lives here.

So, we decided to create a page by patients for patients (and Lung Cancer Survivors).  Now, I did have a woman get mad at me because she said her husband died but she was still a survivor.  I happen to agree with her.  Being a caregiver and watching a loved one pass away has to be the most gut wrenching thing in the world.  The problem is, as a patient and someone fighting for my life, I couldn't hear it anymore. 

I think it's amazing to have a group collectively for lung cancer patients and caregivers.  Through facebook it is Lung Cancer Awareness and it's founded and run by LUNGevity.  You've also got Lung Cancer and Caregivers Support Group and finally you've got Lung Cancer Survivors and Support Group,   Additionally, LUNGevity has different groups dedicated to different mutations, etc.  They have a ton of information.  But of these groups, all have some caregivers in them.  And that's okay.  I'm not knocking that at all.

We wanted to make something to where you could only get in if you're a patient or survivor.  A place to vent, to talk about the things you're afraid to talk to non-patients or family about.  Your fears and advice for the future.  Right now we are a super small group, which is great because we are like family in there.  Anyone with lung cancer or who survived it is welcome to join.  It's Lung Cancer Awareness *Fresh Air* *No Drama* .  This is a safe zone.  You are able to really open up about your diagnosis and have the support of real patients going through the same thing.  I didn't really want it to get too big.  It's great to get to know everyone, plan meet ups, and show our loving support.  We don't talk about politics or religion, although you can say that you are praying for someone.

So, basically that's it.  I've gotten a lot of backlash and animosity I feel from other patients/organizations.  But, you only live once.  And if I want to comfort these people and them comfort me, I don't see a problem with it.  And if you do, I'm sorry.  This gives me hope.  The OG's that actually participate really makes me excited.  So thank you Linnea, Cliff, Don, Tracey, and all the other long termers on there.  I just LOVE it.  And guys, if I'm doing something wrong or you just want to vent, you can always DM me.   Thank you Catherine, Ashley, Diane, and Jennifer for helping make this dream a reality.  I love you ladies! 

Please pray for my friend J.C. as he just learned he has stage 4 melanoma.  And thank you all for your continuous prayers and support.  And if you want to join a group where you can air that dirty laundry and still have complete privacy....join us!  God bless you all!  And Karley is still playing volleyball! Thank you to all that prayed so much for her!

Saturday, September 15, 2018

Fatigue and Broken Dreams

This is such a common problem with us lung cancer people.  I mean seriously, you could tell me to nap anytime and I could.  Especially lately.  I think it may be depression from losing so many people.  Being diagnosed in 2012, I am so very blessed and thankful to still be here with my family.  But....I keep losing friends.  I feel like I talk about this in every blog.  Each of these people leaves behind a scar on my heart.  After Kelly Shannon, I wasn't sure how I could make it heal.

I try not to take life to seriously and have fun.  I do my best to not let cancer interfere.  And for the most part, it doesn't.  It's only when I lose a friend that I feel like it is really getting to me.

Cancer was a blessing to me in that it allowed me more time with my family and woke me up from being the workaholic I had become.  But it's scary to think of your children and other family having to go on without you.  It's not what I want, but if it happens, I don't want them to be sad.  I know it's inevitable and I'm totally guilty of it with my friends, but I want that day to be a day to rejoice.  I won't be the chick that smiles and cracks jokes, but deep deep down her heart is breaking for the people she's lost anymore.  Sometimes I can be totally carefree and for a few moments, forget all the damage that has been done.  But, this never lasts long.  It always creeps back in.  I feel like my world stopped November 27, 2012.  I see everyone carrying on, I just don't feel like I'm one of these people anymore.  I'm frozen in time.

So, after writing only this much, I'm getting super sleepy.  Thank you all for your continuous prayers and please keep them coming.  Karley healed and is back to playing the game she loves, volleyball.  I love watching every minute of her playing as well.  Also, please pray for the Jeffords family, as Sarah recently gained her wings.  She was in her mid twenties and lived not far from me.  There were three of us I know of with lung cancer in this general vicinity.  Now there are two.  And of the two, I'm the only one doing okay.  Please pray for Paula Lusher.  Her cancer has returned.  I keep thinking of all the broken dreams and hearts this disease causes.  It's devastating.  God bless you all.  And keep smiling!  You never know how much it can mean to someone else.