Joining an online community of lung cancer patients and caregivers is wonderfully supportive, informative, even lifesaving. But members must pay dues by weathering frequent losses of friends.
Saturday night, March 29, 2014, another young stage 4 lung cancer patient died of her disease. Jessica Rice, age 33, who tweeted as @stage4blog and blogged at stage iv.wordpress.com, gave hope and inspiration to many lung cancer survivors before succumbing to multiple brain metastases.
Sometimes it’s too much. Tori Tomalia (@lil_lytnin, who blogs at A Lil Lytnin’ Around the World) reflected on this in her blog yesterday. She voiced what many of us feel when we learn of another death in the lung cancer community. She said it so well, I asked to reblog her post from Sunday, March 30. Here is her blog entry, reposted with permission.
Tangled Thoughts from a Restless Mind
by Tori Tomalia
“Enjoy yourself, it’s later than you think.”
I’m tired of being reminded of the fleeting nature of our time on Earth.
I’m tired of being aware that this can all end so quickly.
I’m tired of knowing how important it is to stop and smell the roses, that the frost is coming soon.
I’m tired of happy moments carrying the pang of realization that this can be gone in the blink of an eye.
Understanding the importance of living for today is a terribly heavy weight to carry.
“when Time and Life shook hands and said goodbye.”
I’m so tired of people in my community dying.
Exactly. Couple these feelings with survivor guilt and it’s a perfect storm that had me depressed and teary-eyed all day yesterday.
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Ruth, it’s so hard to keep losing friends.
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I agree. Even though I don’t personally know any of you, I feel as if I do through your blogs and FaceBook. And I cheer for you when there’s good news, and cry for you when the news isn’t so good.
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So many have been lost… In the lung cancer support group I co-facilitate we lost 2 members within a month last year, and all the losses in the Inspire family, in the twitter world and of course my husband and my Mom (throat cancer) …I look forward to the day when I won’t have to hold my breath every time one of my “lung cancer” survivor friends go for a scan. I advocate to help make that day come quickly.
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This is so much to take in my life has changed so much in 6 days, to find out my dear mother was diagnosed with stage 4 lung cancer metastasized to brain and adrenal glad. Now I’ve got to take over and be her Mom and take care of her. She’s so hopeful and I have to be hopeful with her. I hope this hard journey goes as smooth as possible. God Bless all of you.
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If possible, please help your mother to get a second opinion at a National Comprehensive Cancer Network facility. You can find a list of them here:
http://www.nccn.org/members/network.asp
For metastatic lung cancer patients, getting the right oncologist — one who will test tumor tissue for EGFR, ALK, and ROS1 mutations, and treat stage IV aggressively when possible — can make a world of difference in survival time.
Best hopes for your mother, and for you.
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