It’s a jungle out here

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.

You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.

It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.

Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.

Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.

It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.

We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.

Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.

 

xo dedicated to all we’ve loved and lost–far too young, far too many

*thinking of you, Kimberly.

 

 

52 responses to “It’s a jungle out here

  1. crying….so true! thank you….xo

  2. Love you, Linnea!

  3. Beautifully expressed! thanks for sharing. LIVE!

  4. Pingback: It’s a jungle out here – These Are My Scars

  5. Such a lovely written blog ❤️ Lots of stuff I relate to . Well done on your survivorship 👍 With your positive attitude I’m not surprised. Here’s wishing you many more quality years ❤️

  6. Wow, so concise and to the point. I have been battling for 11 years and certainly don’t look like it to all who know me. I rarely complain or discuss my disease with anyone including my husband and feel so blessed to have just witnessed my last grandson’s graduation.
    But, I sometime wish people would understand what living with this means day to day. So, may I borrow some of your blog to use if I ever feel the need to express my feelings. You have said it so much better than I ever could. Sending you love and thanks for your inspiration.

    • Roni, you can always borrow my blog 😉 and I’m glad those of us living with lung cancer have others for a reference point as even our families don’t always understand what is going through our heads. xo

      Linnea

  7. Hi Linnea … I just wanted to take a moment to say thank you. Your words are so inspirational and meaningful to someone like me, as I just found out that my Dad has Stage 4 Lung Cancer (no idea why I capitalized those words). He too has ALK+ NSCLC.

    • Thank you Chip. And best of luck to your father–as someone who is ALK+ he should have more treatment options.

      Linnea

  8. Thankyou from England Linnea , you give understanding and hope ,a very special gift to me xxxx and all of the lung cancer communityxx

  9. Linnea, I hope somewhereyou are complying all your written wisdom which you’ve been so gracious to share with us. This blog was our hope as my Steve struggled with h NSCLC and my inspiration after we lost him. Your walks with your pup are pure joy. Keep Standing Strong . My friend

    • Hedy, I honored that you continue to follow my blog (and Kumo’s adventures). I think of your Stand Strong words often. xo

      Linnea

  10. Thanks Linnea. You explained so well how I feel. Xo

  11. 12 years. Wow. That is a long time. We’ve been living with it for only 5. Sometimes I catch myself too late saying, “Let’s do this next year!” Or, “I’ve always wanted to go to Greece, how about you?” It’s a cruel disease in so many ways. Last year someone from church came up to my husband and said, “Oh my gosh, I thought you died a year ago.” What do you say to that? Nope, still here. Thank you for sharing your wisdom and insight. Hang in there. XOXOX

    • Judy, it is a cruel disease–the devastation is not always apparent to outsiders. I often refer to myself as ‘not dead yet’—that might work if that (awkward) situation happens again. xo

      Linnea

  12. Pingback: It’s a jungle out here | life and breath: outliving lung cancer – My Cancer Gig: Walk With Me

  13. Love your comments. I am going into my seventh year as a lung cancer survivor – was NED several years, but the damned thing is back. Anyway, your dental comment was right on. I am struggling now with that question – do is it really worth it to spend several thousand dollars on a tooth at this point??
    Love your blog.

    • I delayed dental work for several years. Not sure if it was the right decision but I just couldn’t see the future at that point. These days I feel more secure but it is always a tenuous security. And thank you.

      Linnea

  14. Thanks for that posting Linnea. Rings true on so may levels. Wasn’t sure I’d get to the 5 year milestone myself. Hope to follow in your foot steps. You express really well the passage of time (in this experience) and the observation of fellow travellers (for want of a better word) falling away .. and wondering ………
    Crazy how looking healthy can hide so much. Makes one wonder. Was it you who posted ‘not as healthy as I look but much healthier than my diagnosis/prognosis would suggest. Love your posts.

    • Tom, yes, I said something about looking healthier than I am, which is how I want it but then again, it makes it even harder for family to understand what I am experiencing (and have been, for over a decade now–that is the bad but also, obviously, the good news). Thank you and I am impressed with your selection of a 900 page novel. Let me know how it is 🙂

      Linnea

  15. Taking on a Paul Auster novel Nearly 900 pages ………………. Great read …….

  16. Words only those with a cancer diagnosis can fully understand. xxx

  17. Dear Linna, I always like to read your post and get an update of this lung cancer. I just celebrated my 7th year survivorship. I am tired of thinking dieting instead living to the fullest every day. With current treatments, we all can live longer without many side effects.
    Joanna

  18. Thankyou for writing this…xo…I also live with Cancer 4x. I continue to try to focus on whats right in front of me…one moment at a time..living life…trying to listen to what mom said….Do something that makes you happy everyday. I am an Occupational Therapist in a big hospital…I see living and dying….and then there’s living with cancer….and…the aftermath…and..a sister that has..no clue that keeps telling me to breathe…easy for her…I..and so glad to know that there,and me others out there like me… even though we are all different we have some similarities and we can learn from each other I appreciate our lung cancer group so much you are the only ones that truly know it is a battle each day my prayer is that God goes with us to the Battleground in the front lines lead us Lord and give us your strength I love you all

    • Lynda, this is the isolating part of our disease–the fact that even family members can’t always appreciate what it’s like to truly live on the edge–not by choice, but rather circumstance. Your mom’s advice to you is good–grab onto those happy moments. xoxo

      Linnea

  19. Linnea: You said so well what we’ve been living for nearly 4 years now. Life was good – and we knew it was – and then it wasn’t. My husband was diagnosed in Nov 2013 Stage 4 and told he’d live possibility 18 months. We’re so grateful that those initial 18 months has stretched into almost 4 years but all of those emotions you expressed, he/we live on an almost daily basis. We don’t plan much more than 3 months ahead which is his schedule of oncology visits. It’s hard – but we’ve never actually had to face the dental thing. Never thought about that. With us, it’s always should we spend money on holidays or hoping he’ll live long enough to see our eldest grandaughter graduate next year. Sigh…… But having said that we still think life is good – just different – but good.
    Thanks for putting so well into words what he faces. May we have your permission to share them with friends and family? Would even like to use them for a Lung Cancer Fundraiser we’re dreaming of holding. Congratulations on your 12 YEARS. Here’s to many, many more.

    • Joyce, it’s such a weird mix of gratitude and anxiety–this daily dance. I too planned three months out–for years. I finally feel as if I can see a little further into the future but that can change with my next scan. Keep living the good life. And you always have my permission to share what I’ve written. xoxo

      Linnea

  20. Michelle Reid

    Thank you for sharing and for writing such a beautiful blog. I have been battling nsclc for 3 years now, and at stage 4 for 19 months of that. My cancer is uncurable, I’ve accepted that. What bothers me the most is that I have a family that shuts down when talk of the inevitable comes up. What will they do when I die? Will my mother lose a third child before she dies? How will my kids survive? Those are questions I ponder every day. It’s tiresome. You are inspirational and you give me hope. Thank you.

    • Michelle, I have been seeing a thoracic social worker for years now–I couple my appointments with her to my oncology visits. She has been my lifesaver–and has listened to all those things I could not share with friends and family. I also talk to other patients—people who are in my shoes. Stay hopeful.

      Linnea

  21. You have expressed in words a feeling I’ve had for quite some time. At times I feel that I’m caught in amber, stuck and unable to remain engaged, unable to seize the day. Your words dislodged me a bit and I’m trying to move on. Thank you for your eloquence.

    Rita

    • Rita, I know that feeling–but damn, we’ve got some living to do and we best get to it 🙂 Big hug.

      LInnea

  22. I am now 6 years out and know exactly what you mean. I have a couple of friends with lung cancer who I lean on for advice and support. We had a large support group in Phoenix for a few years and suddenly 12 of them had passed away in less than 18 months. I was overwhelmed and withdrew from that because the grief of losing these friends was so big and so very personal. I only make plans 6 months out. Thank you for this blog. It helps to know I am not alone in the way I feel. Susan

    • Susan, you are not alone. Look how many times this blog has been shared on facebook now (833 times at last glance)–so many of us feel this way. xo

      Linnea

  23. Hi Linnea, Thank you for sharing this insightful post. You continue to be an inspiration to me as I start my sixth year as an ALK+ cancer survivor. One has to walk this path to really understand it. You have expressed that beautifully. I especially agree with it being a two edge sword…but so it life. As you mentioned in a comment…it’s not by choice but by circumstance…how true. So happy to hear of your twelve year success. Here’s to tomorrow and one day at a time. Carpe Diem!
    Warmest Regards,
    Elizabeth

  24. Pingback: The future has nothing to do with you. – And … Cancer.

  25. Sharing this very insightful and personal truth. Thank you for expressing what many of us feel and live with.
    Sharon

    • Sharon, if I was able to articulate something that not only I but others are feeling, than I am honored.

      Linnea

  26. Belinda Scruggs

    Thank you Linnea!!!! Always a blessing!!!
    You say it so well!

    Belinda

  27. I have cried 3 times today. My husband was diagnosed in November. Anyhow, I started a blog as a school assignment. I created a site for another class. I read your post because I wanted to. I do not want to be reminded of this reality, but it is a reality. If I pretend to ignore it, it creeps up on me and then I lose it. I cry. All I can do. If I write about, it helps. It’s helping. Not sure what the future holds. Thank you. Thanks for your post. Thanks for giving me hope for tomorrow.

    • Hello Ms. Patti, we all have times we can’t believe our reality but never give up hope. It inspires me to read Linnea’s blog. She is amazing! I also would recommend two wonderful, hopeful, inspirational books. You Can Conquer Cancer by Ian Gawler and The Metabolic Approach to Cancer. Lot of good positive thinking and was to optimize your treatment. I hope this helps!

  28. Linnea, This may be the best ever of your blog entries! You are one heck of a writer. Cyndi

  29. Pingback: It’s time. | life and breath: outliving lung cancer

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