Skin deep

Dear people

This is a plea to myself as much as it is to others. This is an appeal to each of us, to pause and think before we judge others, especially on appearance.

I know what you think when you see me, whether for the first time or as a longer acquaintance.  I can read it in your eyes.  I see the belief that I look the way I do because I do not care about myself, I am gluttonous and lazy. I know that look which betrays pity and blame combined. Which cuts into my soul.

I know that I have not worn my years kindly.  But I do not think you know just how much I struggle with that, every time I look in a mirror and each time I see myself reflected in the eyes of judging strangers.

I do not want to have to tell in advance, that I know how it seems. As if I live a life of sloth.  But I yearn to challenge that judgement, and preface a conversation by saying just how hard I push against the forces which shape me.

I will give you an example. I move increasingly awkwardly. Femara is a drug which decreases the probability of my cancer recurring or progressing. For which I am thankful.  How can I not be?  Despite the accumulating side effects which conspire to make my mobility increasingly constrained and painful.  I push myself to get up and move about, despite the pain because I know it helps a little and that inactivity is an enemy. Despite that pain when I rise to my feet and the jarring pain in the first steps, which gradually reduces to an ache and awkwardness.  But I can tell by your looks, that you think my bulkiness is causing this lumbering gait.

I hear comments on my weight and suggestions that I should walk a little. I know that the intent is not unkind, but still I fight back tears. I hate my defensive tone when I try to explain gently that I have cycled five kilometres that very morning, as I do most mornings.  That I have swum half a mile, as I do most mornings. That I am probably fitter than I have ever been since my teenage years. The irony slaps me, knocking me sideways. I know you don’t really believe me.  I know that because, if you see me by chance one morning on my bicycle or swimming, your expression is of surprise.

I can no long walk freely.  My toes have retained that numbness of peripheral neuropathy from chemotherapy. I am frightened of falling.  I stumble even in the house and earlier this year had one bad fall. Those numb toes caught on a paving stone, slightly upturned and I fell heavily on both knees. Those tender, already painful knees.  My confidence has been dashed, and my love of walking is a memory as I pick tentative, cautious and painful steps.

Dear people, I had no idea that there were so many long term effects from treatment which has probably saved, and at the very least significantly prolonged my life. When I learned that my thyroid function had been annihilated by chemotherapy my initial reaction was one of vindication.  Here is a major reason why I struggle with my weight despite being more active and physically fit than I have ever been.  It is not sloth or gluttony.  Zero thyroid function is a very clear medical reason behind stubborn extra pounds. Every morning before my day begins, even before I put on my swimwear as the sky slowly lightens, I have to take synthetic thyroid.  Every day I take this, and will for the rest of my life.  Any hope that this artificial medication would re-shape me was however dashed as the months after this bonus diagnosis and new medication slipped by without any sign of weight loss.  An hour of exercise in the morning maintains a fairly steady or even mildly gaining weight.  Any reduction in activity results in rapid weight gain.  Which does not reduce no matter how active I am.  This is sickening and frustrating.

It is human to judge and to make assumptions. We are wrapped in our social and cultural baggage which nurtures beliefs deep within us. It is also human to smart when we are on the receiving end of those suppositions.judgementI know that I should accept the way I look.  Even my doctor has told me I am doing everything right and that I should try not to be so hard on myself.  That is one part of the question.  The other part is how not to take it so much to heart when others are unintentionally hard on me.

shoesAnd that is the one I can’t crack.  I can rationalise the comments and looks, and can attempt to reassure myself that I am not who I appear to be.  But I can’t stop it hurting.  I can’t prevent involuntary sickening twist-in-the-gut  reaction when yet another person remarks. That lingering sense of sorrow and shame which descends on my spirit. The futility of defending myself, knowing that it just does not appear credible, and minds are already made up.

Dear people, you do not know how much I hesitated to write this. How bare my soul feels putting these words on the page.  How exposed and vulnerable this makes me feel.  How sensitive and susceptible to more judgement as a result of disclosing my innermost anxieties and insecurities.  How uncomfortable about such a self- indulgent outpouring.

We do not know what innermost struggles there are within each individual, hidden by smiles and a seeming lightness of the spirit. Painting a smile and crafting gentle words while the soul writhes in pain takes enormous effort.

do not judge me

To paraphrase a well known saying – let us aim to be kind to others , for we cannot know what private turmoil there is within each one of us.

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66 thoughts on “Skin deep

    • Suse – I can’t tell you how much I appreciate your words. This has been troubling me progressively and particularly since the switch to Femara last year. Love you lots you beautiful friend xoxox

  1. I can only imagine the outpouring of support and empathy you are about to receive, my dear. You have touched a nerve that is raw for so many of us – whether breast cancer survivors or not. I have rarely read a more eloquent and heartfelt description of how it feels to be judged – particularly when based on things beyond our control, which have little or nothing to do with the content of our character. The depth and intensity of the pain inflicted by the unwitting cruelty of others is difficult to articulate, and while some people’s challenges may seem to pale in comparison with those of others, the sting of the shame and the erosion of our self esteem is every bit as excruciating and destructive to our already-fragile self esteem. I know that I can often be as guilty as everyone else, but with awareness comes at least the glimmer of the willingness to change. You are an inspiration to me and I hope all of us can find a way to truly believe, deep within ourselves that we are beautiful in the most important ways and that we are not only enough, but actually quite wonderful indeed.

    • Thank you so much for your wise words – this has been eating away at me and it gets harder to keep composed when comments come. I find I am just not able to make that leap yet which I know will help my self esteem. I know that I am so not alone in this, it is a horrible great elephant in the room.

      I hope you are safe and well.

      Lots of love to you xox

  2. It’s OK not to keep composed… crying (and laughing!) are cathartic and necessary. I know that for me, a lot of the stress comes from the energy involved in trying not to feel what I’m feeling, and not acknowledging the pain, so I end up carrying it around with me and it comes out sideways, and in ways I am usually not very proud of nor happy about (not to mention ineffective!). I have been a loner for most of my life and always said I didn’t really care what others said or thought of me, but while that may be true at some academic level, I am often wounded to the quick by the looks and comments of colleagues and friends, but I put on a brave face and never let on. I don’t know how one builds self-esteem to the point where such things don’t affect us as deeply.

    • You speak a lot of truth here J – crying and laughing are indeed cathartic, as is writing, so I find. As you say, no matter how we rationalise the way others see us, it still hurts. That is what I too have difficulty with – how to stop it cutting to the quick. I smile, but it gets to the stage where I find it increasingly difficult to remain composed. Big hugs to you xxx

  3. You are not alone. I know you know this just as I know it sometimes helps to hear this from others.

    I’m fat. I don’t bike or swim and I don’t overeat. I don’t exercise much because I can’t – I have Ehlers Danlos Syndrome. Even most doctors aren’t familiar with it, so I’m not surprised when no one else has, either, except for other people who have it. Because of EDS, I’m chronically ill and in chronic pain. Exercise leaves me unable to do more than sleep 20+ hours a day for days after and it leaves me with even more pain than normal. It leaves my already-dislocating joints even more unstable. EDS leaves me I’ll in more ways than most can even imagine. Yet, other than being fat, I look entirely healthy.

    It’s not the same as cancer or the after effects of cancer treatments, but it’s not entirely different, either. I get the judgements, the looks, the comments, the well-meaning “advice”, the condescension. It sucks. Hugely.

    You are not alone.

    • Thank you so much for your comment – it is very helpful to have your perspective and experience. I do remember you talking about this before and can understand that with a less known illness and a lack of understanding, that this brings its own challenges and judgements. It does suck – and it is exhausting living with this less tangible side of chronic illness. I am glad we are not alone, but wish that this was not the prompt. Big hugs to you too xox

  4. You are definitely not alone, my dear. I too have a wrecked thyroid, and I too exercise like crazy and eat healthfully and carefully (except for my beloved champagne!), yet the pounds are stubborn. Sometimes I’m embarrassed when someone at the gym asks if I’m there every day; I’m embarrassed because most people who make the lifestyle choices I make would be much thinner. But we, Phillipa, are not most people.

    I know how hard you work because you write often of your biking and swimming–and I’d love to see those who are judging you ride 5K or swim laps. The judgment is terribly hurtful, and it is destructive. I applaud you for keeping your head up and for writing with such brutal honesty. I hope it helps to know that your blog friends around the world are holding you close and hoping for peace to fill your heart. xo

    • Aaah sheesh – I am learning that I am indeed not alone, and while I am thankful, it is rotten to hear that you too are in this same frustrating and tough place. That awareness that we are not alone does take the edge off the loneliness.

      Thank you so much – I feel enormously supported, and more so – understood. xox

  5. Dear Philippa,
    It must have taken huge heaps of courage for you to write this post. My heart is going out to you, and the pain you’ve just expressed (and the lesson about first impressions you’ve just imparted, which I will retain). When I visit your blog, I am always caught by the beauty of your writing, your world and your voice. You don’t show photos often, but when you do, I’m glad to see you smiling (I’m thinking of one photo that has somehow involves writing, and you have this big smile on and you look so happy. Is there an umbrella involved? I can’t quite remember!)

    I’m so sorry for any second in which you don’t feel beautiful, or are hurt by the ignorant judgement of others. To me you are beautiful. And I’m certain you are beautiful to all who know and love you best.
    ~Catherine

    • Catherine – thank you so much, I have been struggling with this progressively and the past two weeks have just seen a few prompts to finally bare my soul. It feels so exposing.

      I do appreciate your words, and it is enormously helpful for me to remember that I am more than my appearance. Though it is true that I post very few photos of myself. I think the one you talk of might have been taken on my birthday in Cambodia two years ago – that has such happy memories so thank you for bringing it back into focus.
      Love and warm hugs to you, Philippa xoxox

  6. Hello Philippa,
    I’m sending you a huge hug right off the bat. And also a thank you for showing your vulnerability here. Your words are so honest and also maybe surprisingly (to you) very comforting for me. Like you, I also struggle with my appearance, weight, mobility and general physical well-being post diagnosis. I know many are judging me as well… It’s hard to not let the words and the stares sting, maybe even impossible. This is one of those under-discussed areas of survivorship… Regardless, I may have never met you in person, dear friend, but I know you are beautiful. Never forget that for a moment…xoxo

    • Thank you so much Nancy, and I am sorry that you are in this space too. The one word which particularly resonates with me is “impossible” regarding how to stop the words hurting. I agree that it is under discussed and actually maybe even glossed over. On #bcsm I saw a few minutes ago a link to an article about weight gain contributing to breast cancer. I know it is not new but it is SO frustrating.

      On a sunnier note – you know, we should really try for a global meet up somehow……
      Thank you for your thoughtful, kind words. xoxox

    • What a ray of sunshine seeing your lovely comment, J bahini! I hate being in this headspace just now, and although this feels horribly exposing and self indulgent I think it is helping to process and deal with what I can and can’t control.

      Big big hugs to you – we are long overdue a chat or skypeee. xoxox

  7. Philippa, I also have lots of joint pain and a thyroid problem after chemo. There is no doubt that treatment takes a toll on the mind, body and spirit. I am sure this was difficult to write, yet I hope you know that you have helped so many others who are afraid to speak about this. I have only met you through your writing but I know that you are beautiful inside and out. Cyberhugs and xoxo – Susan

    • Susan – I am sorry about this being a trial for you too. There just seem to be so many of us who are struggling, or putting up with this. Yes, the post had been written for days, and ready to post for hours before I finally bit the bullet and pressed “publish”. I still feel terribly exposed.

      Thank you so much for your kind words – they mean a great deal. xoxox

  8. my dear Philippa,

    I always think of you as being so lovely; the grace and poise and beauty of your words that I know comes from a beautiful soul; and beautiful souls radiate so much outer beauty. I know you are beautiful. I am so terribly sorry you have suffered such harsh judgment, so undeserved and so very hurtful. I am glad you had the courage to write about how it makes you feel so that we who love you and have been on the receiving end of your loveliness, can embrace you and comfort you, and reassure you – you are beautiful, dear Philippa. please keep holding yourself in the highest light of all that is beautiful about you, and don’t ever let anyone darken that light.

    I believe people who are prone to judge, to make comments, to stare and to be uncharitable are often the ones who harbor self loathing, that they don’t see themselves as physically worthy and attractive; it’s the same as the truth that if we don’t love ourselves, we can’t love others; if we judge ourselves harshly and don’t see our inner and outer uniquely beautiful selves, we are most likely not inclined to view others in the same manner. people who judge others – you need to work on your own selves!

    much love and light to you, sweet Philippa,

    Karen XOXOXOX

    • Karen you are so kind and generous – thank you so much for your beautiful words. I do believe that mostly the intent is really not to be unkind, but there are just those overriding assumptions.

      You make such an important point about respecting and loving ourselves – if we judge ourselves harshly then how can we be sure not to judge others. Truly food for thought and something I need to work on.

      Thank you so much – love and light to you too xoxoxox

  9. I am also a breast cancer survivor battling the same weight issues due to treatments and arimidex. I walk, swim, bike, etc. and nothing. I was complaining to one of my friends and she said, “funny I don’t notice your weight. I notice a beautiful white light that shines on you whenever you are around”. I keep that image in my mind. It helps…a little.

  10. You have said this so eloquently for so many of us. As if mutilating surgeries were not enough, we must deal with so many permanent effects of chemo, radiation, plus ongoing treatments like femara (me too). You have a beauty of the soul that shines through. And I mean that from the top of my head where the hair grew back thin and grey to the tips of my chemo-numb toes.
    About that thyroid, yes low thyroid truly makes you gain weight. No, no matter what they tell you, getting on synthroid does not mean it will come back off. Voice of experience. I was hypothyroid for a number of years before cancer treatments and now it is much worse. I do best if my TSH is in midrange (2 or 3), so if they have your TSH at 4 or 5, maybe it will help to raise the dose a little. Unfortunately, many of my thyroid symptoms (fatigue, dry eyes, aching, etc.) that used to alert me the dose need raising, are also fermara side effects.
    There will always be people who judge. Just remember, the beauty of mind, soul, and heart are what truly matters. You have that. God bless.

    • Thank you for your kind words, and I am sorry that you are also dealing with this plethora of afters and sides. I find that juggling interactions between meds, and managing the side and after effects just mind-boggling. It is reassuring to know that if is not just me, and that I am not doing something “wrong” for it to be like this. Warm wishes to you too

  11. Oh sweetie! I relate to so much. Well except the part about exercising every morning – most days I fear something will just break! I wanted to comment as one who has struggled with thyroid her entire adult life. Pardon if I sound like I’m giving a lecture. There are two types of thyroid hormones. At one point in my thyroid career of struggling with weight and mood, my ob/gyn offered that I would never get my metabolism under control taking synthroid only. He then explained about the thyroid having different components, and that synthroid addresses one of these. (And I can never keep them straight, but…) We have T-3 & T-4. Blood work also measures ths (?), which I could not explain if someone threatened to shoot a puppy. My points being that it is important to make sure your doctor is checking both those. Not only that, but thyroid being a hormone, it is important to know if you bodily supply is bio-available. So when you have your thyroid checked it is impotence to have checked for FREE T-3s and FREE T-4s. Also there is not one synthetic to address both, so I take Synthroid® and Cytomel® to address both components of thyroid. They both have generic forms in the US. I only share what I know as it applies to my. Unfortunately, I also know that estrogen, progesterone and the thyroid hormones work in tight conjunction, so those of us with hormone receptor positive cancers are kinda screwed from that standpoint, and messing with the feeder hormones to try to starve our cancer probably messes with thyroid before we even begin damaging gland with chemo and radiation. Not a doctor, not a nurse, just a veteran thyroid imbalance sufferer. I’m sure I rambled too long. Or that someone else already addressed it. The things you addressed about feeling judged at a glace touched me to the core, for I feel it whenever I leave the house, which is less and less. Kudos to you for your swimming and biking! May your body allow you to continue for a long long time! And remember, Free T-3 and Free T-4. You know you have every reason to hold your head up, and I know it’s hard to do in the heat of the moment of a piercing stare. ❤

    • Oh my goodness you have given me so much food for though. I have a great deal to learn about thyroid function……. Thank you so much for such a detailed and helpful comment, I will be looking into it further now.

  12. My dear dear Philippa, we we first met you, many years ago, I saw a strong, committed inspiring woman doing her very best to make the world a better place. You are beautiful. You have managed to drive a path through cancer and my respect and admiration for you has grown and grown. You have managed to continue to make the world a better place, you have already achieved that and there aren’t many who can say that. You inspire so many people and we all love you. Those who judge you are not worthy of your thoughts, easy to say I know but remember that the ones who care see your beauty. Xxx

    • Oh dear Lizzy – thank you so much for saying these things! I have to physically either get over to J town and give you a hug, or even better you guys all land over here! Love you to bits, miss you and thank you so much for your lovely words. Big hugs to you all xoxoxox

  13. So often people feel that by telling you, they are doing you a favour. In fact it is just the opposite. No one needs to hear, “Maybe if you walked some more” or if you tried different exercises you might find they work for you. Baloney you don’t speak for me or are you giving me encouragement All i see is disdain..I have been down the very same road you travel. No one tells you by taking certain medication you will feel like your bones will snap in two. Or your knees will hurt so much there are days you use your grandmother’s cane.. Or instead of being critical because I can’t open that jar anymore, or give me looks because I drop and break cups and glasses. i have lost partial feeling in left hand , my fingers twist and contort it’s bloody painful. That’s from Neuropathy Chemo related. Don’t pretend to be helping by giving “helpful criticisms” I didn’t ask I don’t want it and mostly don’t need it!
    Philippa you are a BEAUTIFUL woman,We have all walked on this never ending road of unsuspecting surprises..You said what needed saying eloquently…..
    Here is a (((((((((( HUG )))))))))) coming your way… Thank you for saying the way it is !!
    much love Alli XX

    • Thank you so much Alli – and for the VERY BIG HUG 🙂

      That is the thing, isn’t it? It is not encouraging and certainly just makes me feel hopeless and frustrated. Those side effects you describe too – invisible but so tangible. My knees are so painful and awkward and my goodness do we rely on them a lot!

      The more I work through the comments, the clear a picture I see of a whole host of people struggling with debilitating side and after effects and swallowing the assumptions that everything is behind us and rosy now. I feel that that I have lifted the lid off some Pandora’s box………….

      Very big (((((hugs))))) and much love to you too 🙂

  14. Philippa, this is truly a profound post. It’s implications reach far and wide, not only to all of us who have endured cancer treatment. I think of virtually every one of my patients when I read this. Oh, how appearances deceive. On the one hand, it seems like a very primal human instinct, to make snap judgments based on appearance, and on the other hand, those judgments are shaped by so many crazy, cultural prejudices, especially toward women. I probably represent the flip side of this coin, in a way, because for most of the past five years since I was diagnosed, I have looked okay, but I have not felt okay. And the assumptions that people have made are that, if I look okay, I must be doing very well. And when I answer the question “How are you?” honestly, I face how the listeners often do not believe me, perhaps think I’m exaggerating, or whining, or even lying, or have some character weakness. Because if you ‘look’ okay, then somehow you must be lying or exaggerating if in fact you say you are living with body-slamming fatigue and brain fog and daily pain and joint limitations and, of course, that background fear of recurrence and mets. That, in fact, you are not okay at all.

    No one understands this like we all do. And we do understand. I understand. Love you to pieces. Thank you for writing with such deeply felt candor. xoxo, Kathi

    • Thank you so much for your thoughtful comment Kathi, and especially for highlighting that invisibility of the toll these things take on us making us very much “not ok”. I remember just before my checks last month, being very nervous and my fears being pretty much dismissed with “but you feel ok. don’t you?” The answer which came to me is one I now use time and time again. “Mostly, yes. But then I also felt ok when two tumours were growing inside me, and spreading through my lymph nodes”. Silence.

      And thus I believe that for me the silence has been broken just a little…………

      Much love to you K, and I wish you all strength as we each struggle daily with the crapshoot.

      P xoxox

  15. This is an amazing post. So courageous. This could work for any judgement, a priori on how people should be, should react, should fit in, should say. This post is a blessing to remind to everybody to look beyond the first sight.
    Most importantly, this post is a reminder to be kind to anyone around us and to just keep comments to ourself. Lecturing is so easy.
    I wish I could know you in real. I wish your world was not so far from mine. I wish I could tell you face to face how extraordinary you are and how I am looking up to you. You are teaching so much. with your words. I am sending loads of love from here.

    • I appreciate your words and support so much – thank you. I too wish we could meet you in the real world, but in the meantime this connection is such a lifeline, Loads of love over the seas to you too xxx

  16. We have never met in person (although I do hope we have that opportunity). What I know about you is from your writing and your interactions with others online. You are an amazing woman, doing the very best you can while dealing with an impossible situation. The fact that you published this despite your fears and concerns about how it would be perceived speaks to that. You have helped many with this post and you are far from alone. And I know when we do meet all I will see (paraphrasing Lisa Finkelman Smith, above) is your beautiful shining light. Sending much love.

    • I too would love the opportunity to meet up – what a conversation we would have!

      I so appreciate your words, and am overwhelmed by the support and validation of what I expressed. I have been astounded by just how may are struggling with the same kinds of issues.
      Warm wishes and love to you too

  17. I did not have chemo (two mastectomies and radiation), but I have chronic fatigue syndrome and I have had most of the symptoms you describe for almost twenty-five years. No one believes I am ill. “But you look so good!” “You couldn’t do what you do if you were that ill.” “Well, everyone gets tired.” They don’t understand that saying I’m tired is like saying the ocean is water.

    As far as the disparaging comments are concerned, a wise therapist once asked me when I felt hurt by a remark someone made, “Does that comment say more about you–or about him?”

    Those insightful words have helped me through many a rough spot.

    We’re in your corner, showering you with love.

    • Thank you for your wise words, L – “like saying the ocean is water” – what a perfect expression.

      Yes, I do use that same principle when I am on the receiving end of difficult words. Is that about me or the other person? And so so often it is not about us at all. Thank you for the very helpful words.
      Showers of love back to you 🙂 xox

  18. Thank you!! You have put into words the very things I struggle with also!!
    I do feel judged sometimes and it is very hard to explain to those who don’t get it…just all that we are going through!!

  19. by the way…I am half Scottish. My dad was born and raised in Uddingston, Scotland…a very little town where they make Tunnocks Caramel Wafers. 🙂

  20. This post brought me to tears. You put into words so powerfully what I have been unable to express as concisely. It has been bubbling in my head as well, and after reading this, I feel a tremendous release, myself. The courage to write this is nothing short of an inner strength that you share, giving others the courage to continue the dialog. It is cleansing.

    Thank you so much for all of your posts. You inspire me all the time!

    Many blessings to you

    • Thank you, Micki – I am so happy to hear that this outpouring has helped and that has provided an outlet for the same thoughts and feelings which have been troubling you. Love and blessings to you too and let us ensure that this dialogue can develop so that we each feel less alone in this.

  21. What a courageous post, Philippa! Most people are so shallow, I feel, judging us by our looks. It’s so easy to judge. I hate the word “should.” Keep exercising; even if there is no weight loss, it’s great for the mind and the body. I struggle with weight loss myself due to treatments and such. Sending you lots of virtual hugs.

    • Thank you for your support, encouragement and especially understanding. You are right about the importance of keeping on with exercise even if it feels as if it makes no difference. My Doc and endocrinologist both said that they can tell that “I am doing everything right” by my blood results etc. They agree that it is better to exercise regularly even if I don’t lose weight than not exercise even if I did lose weight. That really helps me…..
      Love and hugs to you too xoxox

  22. I hear you Philippa. My thyroid is also up the creek, and has resulted in premature menopause, so I have had people actually pat my bloated belly and ask me when my baby is due. Imagine.

    • Oh Vic – I am so sorry to hear that you are also batting with thyroid stuff, and that it has hurled you unfairly and prematurely into menopause. Sending you gentle hugs, I can’t imagine how much that must hurt (((hugs))) xxx

  23. Oh Philippa, this is heart-rendingly beautiful. Thank you for writing this. I have nothing new or original to add to everyone’s comments but would like to share a quote with you that I hope you will like – “When I stand before thee at the day’s end, thou shalt see my scars and know that I had my wounds and also my healing” – Rabîndranâth Tagore

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  25. So well written, heartfelt and courageous. Many people fail to realize how horrible the side effects of our treatments can be — and how much they impact our lives each and every day. Thank you for baring your soul and telling the truth. And for opening hearts and minds in the process.
    My warmest thoughts and wishes

    • Thank you for your kind words – you are so right, people just do not realise that life is not a happy ever after and that our bodies are to differing extents impacted due to the treatments and ongoing meds. I feel so less alone now….
      Warm wishes to you too xox

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