Taking Back My Life

In three months, it will have been five years since I was diagnosed with breast cancer. I started this blog over four years ago, shortly after acute treatment was finished and I’d returned to work. At first, it was a way to sort out the aftermath and help me convince myself that I’d be okay. It was a way to wrestle the Monster down to a manageable size, to laugh at it, to provide a voice of skepticism and candor in the face of the Positivity Pollyannas whose tyranny did not reflect my reality.

As time went on, the blog became a lot more — a place to research and write about the collateral damage of cancer treatment, to comment on the massive pink merchandising and sexualization of breast cancer, to decipher hype about research findings, and to provide some practical and hopefully useful information for others coping with pain, misery, fatigue, depression and all the other myriad facets of ‘surviving’ cancer and its treatment. It also became a way to pay it forward, to give something back.

The best thing about it is that it became a conversation. It connected me to a remarkable and worldwide community of like-minded souls. That conversation has been hugely nourishing. I’ve made lifelong friends through the blogosphere and social media. I’ve learned a tremendous amount about the strength, love, intelligence and generosity of our online community, and that has helped me keep my sanity.

It also helped me redefine my focus at work. As I visit my homecare patients, the extensive research I’ve undertaken to write so many blog posts provided me with a lot more tools as I’ve provided physical therapy and case management to an increasing number of cancer patients. Four months after I started the blog, I participated in clinical training for oncology rehab. Since then, I’ve participated in a number of research projects as a subject, gone to advocacy seminars, and gained further professional certification for oncology rehab. All the while, I continued to grapple with fatigue, brain fog, daily pain, and even a close encounter with non-invasive colon cancer. Far and away, the most painful struggle has been to come to terms with how many friends have developed metastatic cancer, to mourn the deaths of so many friends from cancer, friends I’ve made through the blogosphere and through my life and work. The sum total of all of this has brought me to a crossroads that has taken me months to define and articulate. It’s still hard to put words to it, but something has changed. I’ve changed. And I need to shift the path I’m on to figure out what it means.

The path I need to choose now is likely to lead me away from blogging for a while. I don’t know for how long. It might be weeks. It might be months. It’s not for lack of subjects to write about or, strictly speaking, for lack of desire to write about them. It’s more that I need to nourish myself differently right now. There’s been nothing light-hearted about the journey I’ve been on. Even at the height of my snarkitude, which has been immensely fun, the burden of carting this cancer freight in my consciousness has been heavy. And growing heavier. I find myself needing to lighten the load for a while, or shift it somehow, so I do not find myself crushed by the weight of it.

Part of what has nourished me for so long by writing this blog has started to deplete me, not nourish me. It’s hard to admit that — it makes me feel like I’m giving up. But I remind myself that the blog is not the only vehicle by which I can pay it forward and help others. I do it at work every day. And for now, that has to be enough. The uber-awareness I’ve developed by writing here needs to be counterbalanced. I had no choice about accepting how much cancer took over my life since 2008. I’ve lost so much of myself since then that I feel almost unrecognizable when I examine what my everyday life has become. But now, it’s time to take back more of those parts of my life that have been on hold. For a long time, I was hard-pressed to do so. The good news is that now I finally feel capable of doing so. That is a sign of healing.

I know that my next doctor visit, my next scan, my next mammogram or lab test or colonoscopy could change things all over again and drop me right back in the ditch. We always live with that possibility. But for now, while I am lucky enough to occupy that magical place known as No Evidence of Disease, I’m going to endeavor, as much as I’m capable of, to live without looking over my shoulder.

In short, I need to remember how to play.

So, I’ve been re-acquainting myself with my sense of wonder. I’ve been trying to repair my social life. I’ve been reconnecting with my inner child, the child I described in my last post, who followed her passions and curiosity, and explored the world. So much of my life has been interior these past five years. Now, it’s time to get outside of myself again. I’m giving myself permission to remember who I am, a woman who is not just a cancer patient.

I want to write just for the sheer pleasure of it, not to make a point or an argument. Not to vent. I want to write about something besides cancer. I want to write more poetry, more stories that are not about grief. I want to make more art and dust off the sewing machine and reorganize my studio and plant flowers. I want to clean my closets, metaphorically and literally. I want to spend more time with the people I love and NOT talk about how I’m feeling in relation to cancer, but in relation to life itself. I want to set up my father’s old telescope and look at the stars. I want to have parties and cook extravagant meals and go for long drives and read books that aren’t about cancer and draw with crayons and colored pencils. I want to dream dreams again. I want to make plans that don’t involve fear and doctors.

I want to kick my way out of the cancer morass and become myself again. And when I do, I’ve no doubt I’ll be back here, better, clearer.

I want to go out and play. And I think that finally, at long last, I can. And that makes all the difference.

This entry was written by Kathi, posted on Thursday, April 04, 2013 at 02:04 pm, filed under Attitude, Fatigue, Play, Survivorship . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

67 Responses to “Taking Back My Life”

  1. Oh Amazon. I hope you see some beautiful flowers, listen to a stream singing, and hear the poetry in your heart. I am grateful to all you have given our community and am glad to see you turning toward these other parts of yourself. <3

  2. Thanks, dear Lani. I’m reminded of that sage old advice that you can’t help anyone else unless you help yourself. Love to you.

  3. Spread your wings dear you have earned the flight!!! 🙂

  4. Thanks, dear friend. I think we’ve all earned it. In spades!

  5. Bravo Kathi!!! I can relate to much of what you’ve written about what you want/need to do … it mirrors much of what I’m feeling – and not feeling capable of acting on at the moment …

    Sending lots of hugs – and looking forward to an update (when you’re ready) on your play-time.

    I need to start loving life…

  6. Been a long, hard schlepp, Doreen. Hang in there yourself. xoxo

  7. Wonderfully written as always. Will miss your blog but celebrate your new kindness to self. What an example you set. I will be retiring soon and look forward to renewal and new adventures.

  8. Meg, I’m jealous that you can retire! Look forward to being able afford that! Thanks for the kind words.

  9. Cograts on the 5 year mark! Mine’s in 2 weeks!! Thank You for all your wonderful info and insite. What ever your next task is I’m sure you will accomplish it brillantly.

  10. Congrats to you, too, Kim! I think the five year mark is significant for a lot of us, in terms to redefining things.

  11. Sing it, sister! Remembering how to play is good advice for all of us. I could sure use it myself. As the queen of snark, I hope you’ll remember to belt out a few good ones come next Pinktober. You’re on my radar, you know… Hugs, Gayle

  12. You know it, Gayle. Girls just wanna have fun! Cancer gets bloody old after a while…

    Love to you, my friend.

  13. Wow! I just found your blog. You are amazing. I too am a Breast Cancer survivor. I’ll have my five year checkup in June. Yay! You sure hit the nail on the head on the ways cancer sucks. I’m happier now then ever. I look at the world differently now. So now I stop and smell the roses and enjoy life. So go out there and enjoy yourself. Do what you want to do. You deserve it. Love ya pink sister

  14. Kathi – I can totally understand the need to find the U before the C once again. I recently said outloud that I feel like I am someone unfamiliar with the previous version of me. I feel a deep loss and I grieve for the me before 2005. I am excited for you to find that inner child innocence! Do it my friend! I have much love for you…. You are always welcome to come visit Dallas, and i’ll take you to ride a long horn steer, and to tour Southfork Ranch…. and eat some awesome TexMex, washed down with the perfect margarita! XOXO, Cin

  15. Cindy, the next time we have 2 feet of snow on the ground, I’m going to have to take you up on your invite! We lose so much. We’re never the same after, but in our hearts and psyches, our spirits still live, even when they feel dormant. I’m hoping to keep waking mine up. This is me, toasting you with a margarita, my friend. xoxo

  16. Wow…Kathi~ The feeling must be in the springtime air. I’ve been trying really hard to get back to who I was pre BC this year. Getting there one day at a time is a long road, but I hope it all be worth it~ I’m sure you’ll make that transition too and be back to share your wealth of laughter, prose and all the other knowledge you learn along your way~ Be sure footed, and swift in your travels, to your backyard or as far as you please, and know we’ll be patiently waiting for your return after you’ve found your new (old) self once again hon~

    Kudos and {{hugs}} for those travels~

  17. Thanks, Jane. It’s been a long road, hasn’t it? You will always have a special place in my heart for being part of our BCO gang & sharing your love & humor with me during some very sad & lonely hours. Love you to bits.

  18. I will miss your posts! But more important is that you take your life in the direction that you want it to go. All the best to you!

  19. Thanks, Deanna. I’m so glad we have gotten to know each other. Your support through some of my recent trials and tribulations means a lot to me. And I know you understand how much we give our patients, and how important it is to rejuvenate ourselves so we can keep doing it. I hope your garden gives you a bumper crop. xoxo

  20. Kathi, I completely get it, and I’m so happy you have found your way back to your self again! It’s wonderful to see the metamorphosis. But I gotta be honest — Im gonna miss the snark! I’m going to miss YOU.

    Here’s to finding shiny stars and sunshine and laughter and undiscovered galaxies full of fun and frolic.

    PS: Leave the assteroids under the couch where they belong.


  21. Oh, dear, brilliant Renn!! I confess I really may have to make a silly, snarky cartoon sometime about those damn assteroids! xoxo

  22. Kathi, your post resonates with me in so many ways. I wish you the best of luck as you go out and play. If you’re ever inclined to share your stories/poems/artwork that have 100% nothing-to-do-with cancer and 100% everything to do with enjoying life – know that you’ll have one very excited reader (me!) looking forward to those posts. Good luck. Have fun. And we’ll read you when we read you.

  23. Thanks, Catherine. And I do hope to share what I’m up to. It’s good to know you’ll be there to read it when I do. Thanks so much for your support all these months. xoxo

  24. Dear Kathi, may your sense of wonder guide you on the next phase of your life.
    Travel well dear friend.

  25. I will, Sarah…maybe I’ll even finally get to travel all the way across the Pond to see you in person again. xoxo

  26. What a perfect send-off! Your description of “the burden of carting this cancer freight in my consciousness” is so spot-on; that phrase will stay with me in your absence. Dream big dreams and know your blog friends are smiling at the thought of your big adventures.

  27. Thank you, Nancy. We all have a lot of life to live, don’t we? Take good care of yourself & your beautiful boys. xoxo

  28. Wanna make some mud pies? Better yet, let me bring my Barbie case over and we can empty it out and play “business woman.” My mom has some strawberries, so I’ll bring them too and we can have them during tea time. Race ya to the end of the street?

  29. LOL, Scorchy! Yeah! And let’s build forts with blankets & furniture, and build sand castles at the beach, too. xoxo

  30. For me, this is the most beautiful post you’ve ever written, and that’s saying a lot. This sentence: “Now, it’s time to get outside of myself again. I’m giving myself permission to remember who I am, a woman who is not just a cancer patient.” moved me to tears. I can so relate to that.

    I love you. It’s going to be a beautiful day outside today. No matter what. So, enjoy. 🙂


  31. Oh, Traci…your comments moved ME to tears. Thank you, sweetie. We’ve been through a lot together, haven’t we? Wishing you starry nights and sunny days, my friend.

  32. Kathi, I totally get it. You deserve to take care of yourself; you — and none of us — are not defined by cancer. Get out those crayons and PLAY!! Sounds like you will be having a lot of fun, looking at the stars and such.

    I will miss your brilliant posts and snarkiness, but I do understand. Blogging about mourning and grief and illness all the time does get old after awhile. To be honest, I’ve been heading in your direction, but rather than not blogging, I’m going to be starting to post about other aspects of my life.

    I’m comforted that we will still be friends.

    Love ya,


  33. Friends forever, Beth. xoxo

  34. You have expressed my thoughts and feeling about this “stage of recovery” more eloquently and precisely than I could have. I’ve been exactly where you are and for exactly the same reasons. It was when I experienced a day where I almost didn’t think of cancer at all (except for when I had to take my Tamoxifen). After years of bearing the burden of my awareness, not to think of cancer for almost a full day was pretty heady to say the least. And I wanted more of those days. I, too, stopped blogging rather abruptly. I didn’t … don’t know … if it will be for good because, after all, who knows what might happen next. But for now I’ve moved away from blogging about cancer and what I’m experiencing and feeling in that regard. I now blog … in spits and spurts … about quilting. Because I’m finally doing what I’ve wanted to do for years.

    I wish you the same liberating sense of not thinking about cancer … for a change.

  35. Oh, Heather! Thanks so much for the validation. And I had to laugh about your blogging about quilting. I’m not a quilter, but I am a sewer, and I’ve got a great sewing machine I’ve barely used these past five years, plus an incredible art printer that prints on cloth. And after reading an email from the sewing machine maker, I have a massive craving to buy a serger, too, and get cracking on some sewing projects!! A good sign. I haven’t felt like this in ages.

  36. dear kathi,

    what a gift to be able to hear your inner child and the wonderful dreams in your womanly mind and heart come together. i wanna be just like you!

    from the time you responded to my first comment on your blog, i have been spell-bound by your writing. now i am so tickled for you, moving on as you are called to do, to live life in the fun lane. thank you for all your generous and compassionate encouragement, your remarkable insights on so many issues that have had such an impact on me, opening me up to new ways of thinking and “dealing”.

    know that i will be thinking of you, cheering you on to that meet-up with the the you that’s rarin’ to go out and PLAY!

    much love, XOXO

    karen, TC

  37. Dear Karen, you are such a kind person. Thank you so much once again for your thoughtful & warm comments. I certainly hope we keep in touch. It’s amazing what a shift in perspective can do. I feel lighter already! xoxo

  38. ‘Coming out to play’ – for Kathi

    Dance in the springtime Kathi,
    Laugh in the May,
    Gaze at the starlight,
    Waiting to play.

    Dream like a baby,
    Laugh at the moon,
    Colour in the corners
    Of each crowded room.

    Sing as the summer comes,
    Garden the days,
    Coming like alive again,
    Coming out to play.

    Go well and be well Kathi, love always,
    Ronnie xx

  39. Ronnie! A poem! How perfect! You are so sweet. I love it! And now I might finally have a bit more time to keep up with you and your adventures in Liverpool.

    Love always to you, too. You and Sarah are always in my heart.

  40. The other day I saw kids playing double dutch. I so wished I could have jumped with them. You do what you need for yourself.
    Enjoy your inner child, enjoy your YOU time and what ever else you choose to do.
    I’m going into my 5th year. I get it!!
    Love Alli…..XXX

  41. Thank you, Alli. You, too. You’ve been through so much. I hope you finally get to enjoy your life and love. xoxo

  42. Kathi – Bravo! So glad you are ready to let this traumatic experience take a back seat to nurturing yourself in other ways. I bought myself a mug that said “Find it. Fix it. Move on.” and I am doing my best to do that. Hugs and love, Carol.

  43. Thanks, Carol. It feels good.

  44. Oh Kathi, I think this resonates with ALL of us. I took my break after my early stage treatment so I can appreciate how you feel. I have also been writing less in order to engage more fully with the immediate world around me. It’s a tough balance!

    Know that you will be missed, treasure your time with you, and chase some rainbows whole you’re at it!


  45. Thanks, Lori. It is a tough balance. I also think it’s knowing when your well has run dry and figuring out how to replenish it again. I’ve noticed that several of us have had to pull back to greater and lesser degrees, often for similar reasons. Lots of love to you. xxoo, Kathi

  46. Kathi,
    After reading your post, one of my favorite poems popped to mind:

    a song in the front yard
    By Gwendolyn Brooks

    I’ve stayed in the front yard all my life.
    I want a peek at the back
    Where it’s rough and untended and hungry weed grows.
    A girl gets sick of a rose.

    I want to go in the back yard now
    And maybe down the alley,
    To where the charity children play.
    I want a good time today.

    They do some wonderful things.
    They have some wonderful fun.
    My mother sneers, but I say it’s fine
    How they don’t have to go in at quarter to nine.
    My mother, she tells me that Johnnie Mae
    Will grow up to be a bad woman.
    That George’ll be taken to Jail soon or late
    (On account of last winter he sold our back gate).

    But I say it’s fine. Honest, I do.
    And I’d like to be a bad woman, too,
    And wear the brave stockings of night-black lace
    And strut down the streets with paint on my face.

    Here’s to finding your “wonderful fun!” And personally, I look forward to hearing of your adventures when you return.

  47. JoAnn!! What a wonderful poem! Thank you so much for sharing it. It’s perfect. I’m looking forward to having adventures to share. xoxo

  48. I have loved your snarkiness. But if we’re lucky enough to be NED at any given moment, we can choose to vacate cancerland from time to time.

    Have a wonderful “vacation.”

    Meanwhile, my heart aches for our metastatic friends who cannot choose. They simply have to deal day to day, on and on. My love and prayers to each of you.

  49. Yes, Lois, my heart aches, too, for our friends with mets. It’s a much greater challenge not to feel like cancer has taken over one’s life when one is living with mets. I remember Rachel posting in her blog about feeling like having cancer had become a sort of job, and preserving her own identity became more and more of a challenge.

    I think, in a way, that this inspires me to make the most of my life while I can. Love to you.

  50. Thank you, Lois. My heart aches, too, for our friends with mets. It’s a much greater challenge not to feel like cancer has taken over one’s life when one is living with mets. I remember Rachel posting in her blog about feeling like having cancer had become a sort of job, and preserving her own identity became more and more of a challenge.

    I think, in a way, that in part, this is what inspires me to make the most of my life while I can. Love to you.

  51. Hi Kathi,
    I’ve read this post a couple of times, but haven’t known exactly what to say… Of course, I completely understand. I’m happy for you and more than pleased that you wish to move on, but I’d be lying if I said I was completely happy about it. For purely selfish reasons, I’m also sad upon reading this. I don’t want your posts to stop coming. I’m also envious and I wonder if I will get to the point where you are. Your blog has undoubtedly helped many, including me. Thank you for that. Enjoy your time out. That’s what I’m going to call it! So glad we connected via blogging, Kathi. Big big hugs to you, my friend. Now go out and play!

  52. Thanks, Nancy. I don’t think that I would have predicted coming to this a year ago. And I’m glad that you are still in our blogosphere, articulating the important issues & carrying the torch. Knowing how many of us ‘get it’ and continue to advocate so passionately has helped me feel better about stepping away for now.

    I’m glad we have connected, too, and can stay connected. Hugs back. Your friendship means a lot.

  53. Kathi, I totally understand. It’s been 4+ yrs for me now, we were diagnosed around the same time. It is hard to live a life free of cancer if we are tied to it constantly, in one way or another. It is hard letting go, though, and leaving our online friends to find out what our ‘new’ life is *really* like, or what it could be …. a life without posting about cancer in one way or another. I am also approaching this point in my life, but am having trouble moving on, because I feel like I will be ‘deserting’ the women on my bc page. It is hard to feel like I am walking away from them, but at the same time, I feel that I have given this cancer way more attention than it ever deserved, that it is holding me back from really living because I am almost always thinking about it. I get it. Go live. Enjoy life. You deserve it, we all do. I hope to be doing the same very, very soon.

  54. Thanks, Judy. I struggle with the same feeling that I’m deserting the blogosphere. When you care, that’s what you feel. But I also realize I won’t be much use to anyone feeling so depleted. Later, with my batteries recharged, who know what I might be able to do? Hugs to you and good luck in moving to the next part of your own journey.

  55. Welcome to my sandbox Kathi!

  56. I just read this again, and love it even more. Crayons and colored pencils, and dinners with friends and NOT about cancer…it feels light and buoyant and like daisies…


  57. Thank you, Lauren. I’m trying! Sometimes it just means going out to mow the lawn, or cleaning out the closets. Ordinary tasks feel good, too. xoxo

  58. After chuckling at your Dalek cartoon and you liking my FB page recently, I feel like I just found you – in some strange sense I miss you already. I also just found this post… hence my late comment.

    Your post is beautiful, and as I selfishly seem to turn everything around to being about me I wanted to relate that I’ve been thinking something similar. I wasn’t able to get to the 5 year mark NED, so perhaps my train of thought didn’t have a chance to slow down enough before hitting the station wall. However, this month I’ve had some good days without the thoughts of dying in my head… and Kate (katehascancer) has helped me see things in a better light with her supportive words. It surprised me, I realized that I don’t want to spend every day researching and reading, posting, tweeting, sharing or bitching about breast cancer; in my case MBC. And, I’ve been doing this a very short time in comparison. It is what it is, and even I wish to get out and play, without the somewhat self placed burden. I am determined to find my balance now, before it’s too late. Kudos to you dear Kathi, enjoy your life to the max, I will be thinking of you.

    This got me: “So much of my life has been interior these past five years. Now, it’s time to get outside of myself again. I’m giving myself permission to remember who I am, a woman who is not just a cancer patient.” We all get it.

    love and hugs from a stranger,

  59. Carolyn, I’m sorry that you are now dealing w MBC. Crap. But I’m glad we found each other. I admin the blog for METAvivor at metavivor-blog.com/, where you can find some sympatico posts. METAvivor also has a Facebook page.

    It’s much, much harder not to let cancer define your life when you are living w mets. But there are lots of sisters w mets out there who are blogging about it, too, as well as we ‘fearless friends’ who don’t have mets, but know we must all be vigilant & support one another.

    It continues to be a challenge for me to put my life back together, but I’m getting there. And I’ve been letting myself have more fun, and trying to keep my job from overwhelming me. It’s hard to do as a clinician who often treats cancer patients. But I seem to be slowly recovering how to keep things in a more productive perspective.

    Good luck to you & I hope we keep in touch. xoxo, Kathi

    P.S. I’m sooo glad you appreciated my Dalek pic! LOL

  60. […] Stacey, of Bringing Up Goliath fame, decided to walk away from blogging. Before that The Accidental Amazon did as well. Being Sarah and Breast Cancer Sisterhood also are no longer homes to current blog […]

  61. Oh my dear, I have been floating around in a fog for a few months, and only just became aware of *this* recent turn of events via Nancy’s Point. In fact, having come to grips with my faltering brain power, I looked through all the comments after reading this, just to make sure that I hadn’t, indeed, already read it and commented. And forgot that I did. That was a distinct possibility.

    Your keen grip on the facts will be missed, and of course, the snark. You’ve written and researched and reported in a banner-waving way. I will keep you close on FB. Thank goodness for FB. I’m so sorry that i’ve been so out of touch. [hugs] -shelli

  62. <3 <3, Shelli!

  63. I’ve recently just across your blog and I enjoyed reading your posts. I agree about your decision to take a break and just go out there, explore and enjoy every moment of it. We all need a breather, to put our life back together and discover new things. I hope and wish that your journey brings you joy and comfort because you deserve it. Looking forward to your next post, whenever you are ready. Wishing you all the best!

  64. dear kathi,

    I just wanted to let you know I am thinking of you, and so happy that you are making your life what you want it to be. I go back and read some of your old posts for inspiration and I am so glad to be able to pick up some good nuggets to help me move forward – losing my hugh while he was in remission, then finding out I have uterine cancer just a few weeks ago, has ratcheted up the ante to find new ways to think, new ways to cope, and to have more compassion and thankfulness for those from whom we’ve learned a thing or two from. sometimes I need some counterbalance for the new feeling of vulnerability of dealing with 2 cancers as a new widow, and balancing profound grief, an inward turning process, to getting outside of myself to see there are still many gifts life present to us every day. I hope you know and are pleased that you were always, and still are through words you’ve written in the past, a breath of fresh air, a place for a soft landing through all the emotional spirals of our dual cancer lives, and a true comfort and encouragement to challenges that sometimes took our breaths away. happily, dear NED is still with me, and i’m getting the impression that keeping him near might involve some time in the sandbox, happily scooping up some mud pies, and remembering that periods of being carefree is a powerful middle finger to thrust in the eye of that devil, cancer.

    wishing you much joy in new discoveries, and thank you for sharing all the compelling stories that affirmed your determination to not let cancer define you. I caught that ball, and i’m running with it!

    love and light to you, XOXOXOXO

    Karen, TC

  65. Thank you, dear Karen. I’m going to try to write a post today, which is the 5 year anniversary of when I was diagnosed. I’m devastated to hear what you are dealing with now. Another cancer? Good lord, life is harsh sometimes. Much love to you. Please keep in touch. xoxo

  66. Oh, Kathi, I love your blog. This post expresses my own heart so much that I cried by the end. (Okay, I cry easily when I’m moved. I’m like that.) I love your directness and honesty. … And I’m so happy you’re ready to move forward in the non-cancerous pleasures of life. I wish you so much that is good. So many happy, healing surprises. And Art with a capital “A.” xoxo, e.

  67. Thank you so much, eileen! I’m still working on it, but it really has made a huge difference to step back as much as I can from cancer & just have some fun. I feel a lot more like myself, much more relaxed, much more able to be kind to myself. Always a work in progress, that last one. xo

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