Saturday, September 7, 2013

How to be a Cancer Survivor - Part 1

An online post about 9/11 sparked a conversation about whether we should "never forget" or whether we should "move on" from that terrible day.  My argument was that the two are not mutually exclusive, they can both exist at the same time.  My example was cancer survival.  Many woman move on.  They can never forget such an indelible experience which leaves such visible scars,  yet they manage to put it in the past - it becomes a bad dream they remember once in a while.

Then there are those who don't move on; who daily talk, think, and live cancer  - sometimes years past diagnosis and treatment.  I'm not talking about those of us like me, who are in endless therapy.  I am referring to women who were early stage, whose treatment is long past, and yet their cancer diagnosis becomes the defining moment of their lives; their identity.  They are stuck in one moment in time.

That is understandable to me -a breast cancer diagnosis is a tornado that has attacked the very foundations of home, and nobody is taught how to rebuild.

What do I mean?  Monday, a woman finds a lump.  By Wednesday, she is diagnosed with breast cancer, details as yet unknown.  She is going to die, she's sure. By Friday she's learned there are types, sub-types, and more sub-types; she's floored to learn it isn't really one disease after all.  In the coming days, she learns jargon such as HER2+, ER+ or ER-, Triple Negative,  the TNM staging system, Oncotype DX, BRCA genetics.  She must learn what a sentinel node biopsy does, statistics and odds about types of breast surgeries, radiation facts, differences in breast reconstruction. She's poked and prodded and thrown into MRI after CT, sees surgeon, plastic surgeon, oncologist and back again.  She must make crucial decisions very quickly, ones that she feels unqualified to make based on information she didn't even know a week or two ago. She worries that it is life-threatening to take the time to become informed enough, so she dives in and spends days and nights reading about breast cancer: books and websites, forums and blogs.  She reads journal articles with a medical dictionary by her side.  Her life truly becomes consumed by cancer; it is a full time job at first, often with four or five appointments a week, and tons of homework.  She's thrown into this cancer medical blender and can't get out.

Personally, she is bombarded with friends and relatives telling her about somebody they knew who died of her cancer, or giving her wacky alternative theories or sharing some diet they believe kept somebody alive, and now she has to research those as well.  As decisions are made and treatment starts, she takes time off work and normality, and her world changes to that of statistics and odds, scrubs and nurses, medical offices and waiting rooms.

She is the center of this world, and all eyes are on her. Doctors take seriously every ache she describes, nurses focus on her, friends bring food, family comforts her and appreciates her anew.  She's brave, admired, told she's remarkable and special, heck, there is even a special color just for her.  She is no longer the mom in the PTA, she's the mom in the PTA who has CANCER, and is treated accordingly, either with extra kindness or with unwarranted avoidance, but whatever it is, she is now different.

Eventually, she relaxes and becomes part of the process. She knows by first name everybody in the medical offices, she makes friends with other patients.  She learns she is not Stage IV, she is not going to die, not soon anyway.  The terror lessens but doesn't leave entirely.   It is comforting to see a doctor regularly, to know that medications are actively fighting cancer. She may spend a year being treated, or a few short months, but it doesn't matter, it's CANCER and it's her life.

Then her last therapy is over: the chemo bell rings or the certificate is handed out or her rads end or surgical staples are pulled.  The long-awaited day occurs -  she's finished. She's out the door.  She's declared cancer-free.  She's back to her old life.

And many women reel, not knowing what to do.  It's like being dropped into another country with the same name as the old one, one that looks familiar but is no more.  She is left with a mangled body, often with mechanical defects, body image and sexual changes, medication side effects, conditions nobody has told her would happen,  She has a body that has made CANCER, that has betrayed her,  and she doesn't know why and nobody will ever be able to tell her. And, it can come back, early stage or not, even years later.  Many women enter a psychological prison of fear.

Fear of having to do it again, of it coming back locally or fear of it metastasizing and that she will end up like me, end-stage.

I am certain that many women who have been through cancer treatment develop a form of PTSD due to the intensity of the experience.

But all she is told now, once therapy is done, is that she's a Survivor.  She's given unhelpful phrases like "New Normal" and to figure it out on her own and get back to life with no details about how to do so. She doesn't know which aches and pains are side effects or leftovers from treatment, which could be cancer, which would have happened anyway (yes, cancer patients get normal-sick too).  Nobody has explained that tamoxifen causes bone pain, that shoulder problems are common, that scans are frequently open to interpretation.

Friends and family, having watched helplessly by the sidelines, are ready for it to be over, and begin to get frustrated when it doesn't end for her like it does for them.  She feels pressure to move on, but doesn't know how.

Many woman can do it; they can take a deep breathe and move forward and put cancer in the past.  They jump right back into the pool of life, shocking and cold as it may seem.  Many cannot, through no fault of their own.  They dip a toe in and pull back, dip a toe in and pull back, over and over, never getting in over their knees; the fear is too cold, their heart races with each dip.  Some women become stuck in a cycle of fear and appointments, fear and tests, the fear being a return of cancer and the tests are because the doctor must take complaints seriously. "With your history" becomes the catchphrase of her life.  A cough? Probably the flu, but "with your history" they run extra tests, which send women spiraling back into cancerland, certain the result of this test will show spread.   Some women live that way for years and are either always miserable or have periods of calm and peace pierced with flashes of misery.  "My back hurts.  Is cancer coming back?" they wonder, even the day after falling off a ladder.

These women with early stage cancer sometimes write me, the dying one,  to ask for help, that's how desperate they are. "How did you know it was back?  How do you do it?  How do you live with fear?"

It's a huge problem that the medical world doesn't address.  In one of those many cartoonish brochures you receive explaining treatment options,  there is usually a line or two about "woman may feel lost as treatment ends, but that is normal." and ..... period.  Okay, it's normal.

Now what?

I really think there should be a post-therapy cancer class, so women can learn to identify when to be nervous, what to expect, and given tools to manage their lives after treatment.  Included in this class should be physical therapy so women who have had reconstruction can learn that their body function has changed and strengthen the muscles necessary to avoid pain that may now be normal for them.  It never fails to amaze me that they can remove a body part, split chest muscles in half, put an implant inside, and then expect people to have full functioning with no re-training in balance, or strengthening in other compensatory muscles. Many, many women suffer shoulder and back problems post-mastectomy - and most of them think for a while that it is cancer returning.

Yes, I am the terminal one, the women everybody is afraid of becoming.  But still I understand what women go through.  I only had a few months after treatment ended before being diagnosed with mets, and in hindsight, I was likely Stage IV from the beginning.  But I didn't know that, and so I understand the nerves that come.  I did not live in fear those months, on purpose.  In fact, I was about to shut this blog up and go away and leave cancer, in all its forms, behind.

I cherish those months before I was diagnosed with metastatic disease.   I look back on them as last vestiges of my thinking I had a future, with plans and dreams like a normal person.  I miss the days when I could see something online and not think, "Oh, my friend will like that for Christmas, I hope I'm alive to give it to her."

I want women to cherish their time post-cancer too.  Whether cancer does come back a year later or more likely  never, they should love and enjoy their lives as quickly as they can.  I don't want women to look past beauty to the fear.  I want them to look past fear to the beauty.

I know they'll never forget, but I want them to move on.



In Part 2, I will have suggestions on how to accomplish this goal, and steps on how I had planned to do it.




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57 comments:

  1. This is the best writing I have ever read about cancer. I'm speechless.

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  2. Thank you. I was stage I, 2 years ago. Problems with reconstruction so I've still one final surgery to go. I was labeled a survivor the moment I was diagnosed. My "new normal" is fearful still. My facebook friends know I will bore them with every new article released concerning Breast Cancer. I've totally changed my dietary habits convinced that they somehow contributed. I've changed to "natural" cleaning agents and organic food. Thank you for your heart felt words of wisdom.

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  3. Wow-it is amazing that you are able to put all this in words. I just participated in a study of post-recovery/survivors and everyone in my group seemed to spend half their life in terror of cancer returning. I started wondering what was wrong with me, that I don't feel like that!

    I am beyond grateful for where I am, especially since I could easily be in your shoes...or bra I guess...but I can't know anything except my own experience. I didn't worry about getting cancer before I got it, and I still don't, because all I can do is all I can do. So I guess I am one of those who is willing to move forward, even as I never forget.

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  4. Very poignant and heartfelt. Thank you.

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  5. Hi Ann, I was diagnosed with triple negative cancer,stage 2, grade 3 in October 2011. I am now in remission/cancer free, but what you have written here is exactly how I feel, I would love to put it behind me, but it's not that easy. I admire your strength and guts to carry on the way you do and still be able to give others advice and tips.Thank you for putting my thoughts into words and looking forward to Part 2, along with any other of your posts. xxx

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  6. I'm one of those early stage now 4 years out. Subscribed to your blog and on FB some time back and have loved every irreverent word you have written, but this is hands down the best. So, so true! Sending love and prayers.

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  7. Very well said. Thank you for writing out those thoughts...right on target.

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  8. To move on is a gift. And I totally agree that there should be more support. I reckon the moment a person is done with the hosptial side of things they should be referred to a counseller. That way they can find support in rebuilding their life without cancer. ~Catherine

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  9. Oh my God. Nail on the head. How long have you been hiding in my head? I'm think I'm doing very well at putting cancer behind me, but I'm still jumpy. A coworker dx a few months after me is so afraid she can't put a toe in the water as you so accurately describe.

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  10. Dang, you wrote in one post that folks have been writing volumns about. Amazingly well said. Thank you.

    Your friend Betty from Savannah..........

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  11. Thank you. What wonder filled words. A balm.

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  12. This piece needs to be published - what a gift to all of us impacted by cancer in one shape or form. Thank you so much Ann. Anxiously awaiting Part 2. xo

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  13. Well said. After my two cancer diagnosis in 2010--I can honestly say that every ache and pain gives me a little jump and every Doctor's appointment--I feel like I have been holding my breathe. Although cancer doesn't occupy my every day--it sits in the back of my mind. Post-cancer is even more difficult than during treatment--my Doctor was my safety net during treatment. Looking forward to part 2.

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    1. I am in total agreement with you. EXACT feelings!

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  14. My one year cancerversary was yesterday. This is exactly what I needed to read today. I have learned so much from you -- basically everything I needed to make it through this year. I can never thank you enough nor will I ever forget your wisdom, wit and compassion. Please know, as we all do, what a treasure you are.

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    1. What Kate said...so perfect and I can't add anything more.

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  15. A fabulous article which deserves to be published if only to help those following the same path. I'm stage 4 so live daily with the knowledge that entails but I can identify so much with those who can not move on and see the beauty in life for feeling overwhelmed by the shadows. Well done Ann in voicing everyone's fears. X

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  16. You've put into words what so many of us have experienced, Ann. I finished chemo early this year and had my first 'cancerversary' in the summer. I found that, after treatment finished, I was ready and eager to get back to my 'old' life ... but I had to cope with a resurgence of the anger and trauma I felt at the time of my diagnosis. While I was having multiple surgeries and then chemo, there was no time to sort through my feelings; getting through treatment came first. Once treatment finished the feelings came flooding back. Being reminded all day, every day, of my diagnosis by the side effects of tamoxifen doesn't help.

    The upside is: I'm NED, I got through with some residual problems but nothing that keeps me from functioning, and I'm going to cherish and enjoy every moment of my life as long as it lasts. I'll never forget the past year, but I'm moving on. I couldn't have said what needed to be said as well as you have, Ann. You're an inspiration and I hope you know how much you mean to all of us.

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  17. Thanks for your helpful and encouraging writing. My wife is one that has moved on but was shaken this week by the death of her cousin. She had helped him through endless conversation and many, many cards. It's always there, unlike the "friends" who didn't bother to call or communicate at all because they felt uncomfortable. You, a person I've never met but have followed for the last few years, have given me more encouragement and insight on how to help her through all of the crap and insincere people.
    Thank You
    Jeff Bost
    I look forward to your next posting

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    1. See you on Face Book
      Jeff J Bost

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  18. I am a 38-year-old mom of three recently treated for a local recurrence of my breast cancer (surgery, chemo, and radiation both times). I am happy that I did a mostly good job appreciating the 5 years in between my first and second diagnoses. Knowing that it could come back a third time makes me determined to appreciate the time in between again (and hopefully that time period is 60 years!) but the new fears and lingering physical pain have been so much harder to work through this time around. Your post reminded me of the importance of being able to "look past fear to the beauty" and made me more determined to do so. I have always loved your posts since I discovered them, but this one especially hit home for me. Also, your accurate depiction of survivorship will help me explain my experiences to those close to me. Thank you and god bless.

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  19. Thank you, Ann. A great piece of heartfelt writing, and so true.

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  20. You are one amazing woman. I would entitle this Diagnosis and Beyond. I was originally diagnosed with stage 3 breast cancer in 2006. Had chemo radiation, mastectomies, reconstruction, post-mastectomy pain syndrome, implants, infection, and life-saving surgery to remove my implants. I experienced the whole gamut and more... finally considered no evidence of disease until 2012 when I was diagnosed with extensive (and rare) Breast Cancer metastasis to uterus - so I am not a candidate for hysterectomy.
    I've had hormonal therapy, chemo and more... living with Stage IV. I wish you improvement and more life. Thank you Ann.

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  21. Ann, I have felt so alone and wondered if anyone else was feeling the way I do. You are a true blessing to me.

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  22. Beautifully written. I understand our family and friends' need to close the cancer door and move on, as I have been on that side several times. But, as you have so poignantly expressed, I have found it is not so simple to do if you are the cancer patient.
    I had this strange feeling when they pronounced me cancer free. I just couldn't really believe it. Was actually not surprised when metastasis to the spine was found just a few months later. (Premonition? Subconscious awareness of those hiding cancer cells?)
    I am currently in remission, but still in treatment (hormonal) and all their side effects, as well as being closely watched. So, how do you move on with all that still going on?
    I think for some of us at least, you can't. At least not to move on to what life was before. That life is gone. I am trying to rebuild a new life, with parts from the old life, but one that includes and accepts cancer and all that entails, but where cancer is only a part of that life. I want a life of gratitude and joy, but I can't get there by pretending past and current problems away.
    I like your idea of a post treatment class. It actually needs to be an ongoing class for a period of time, with opportunities to repeat as needed as new issues come up as we try to put our lives back together.
    Cancer is like breaking a piece grandma's fine china. Depending on the stage, treatments, and recurrences, you can have a very different outcome. Early stage people who get minimum treatment have a chip or small crack, relatively easy to mend, but it still leaves a mark. Some of us though, are broken very badly by cancer and it's treatments. Although our doctors are very skilled, we are still left more scarred and fragile. But, our lives can still be very precious and beautiful, it's just harder and takes longer to put the pieces together again. And like the mended china, we will never be the same as before.
    I truly hope that your last treatment, the liver radiation, proves to be effective and gives you many more years for yourself, your family, and to dispense your wisdom to the rest of us.
    Elizabeth J.

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  23. Thank you Anne. I am looking forward to Part II. I just finished my 5 year check ups this week and have been surprised by my weird feelings.

    Katie

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  24. Very well said. It has been documented that many people fall apart at the end of treatment when the support ends. I got a therapist who still helps me through life. So I am still coping. I am looking forward to part II.

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  25. This is a wonderful article.

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  26. excellent! your thoughts are so well expressed and relatable to your wide audience. I agree with you that there should be a post cancer treatment that covers the whole gambit- mentally and physically.

    Ann you continue to inspire me.

    on a totally different topic....one of our favorite shows are on now....the last season.....very riveting...

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  27. Thanks so much for this wonderful post Ann! You are amazing.

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  28. You're truly a wonderful person Ann...

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  29. Like others, I read this and felt like you were transcribing my thoughts. Amazing piece! I particularly relate to the situation regarding doctors and their attitude towards one post-treatment. I feel like it's beyond a "with your history" attitude; instead, my doctors look at me like some sort of Bad Luck Bertha--"Well, she got cancer, so who knows what else is going on in there?" I've had so many useless and usually painful tests, it's made me very cynical about requests for follow-up procedures.

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  30. IDC Stage 2, four years ago. All I could think of and still think of is BC and yearly Mammos. Mom developed ALZ. AND, this is awful to say, but now I take care of her and focus less on my BC coming back and more on caring for her. I am actually thankful that I have something else to focus on or else I would be in a padded cell right now (coming close).

    My surgeon even told me that his Psychiatrist at the hospital whom he refers patients to, won't take patients who are more than one year out of BC. BUT, you are so RIGHT we do have PTSD. I can't move on .... and good luck in trying to find a support system for someone who is four years out. They just do not exist. So sad as I could sure use one......

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  31. This is brilliant. I'm so glad to be able to read this here, but it's true that it ought to be published, too. Thank you.

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  32. Thank-you for using yours words in such a powerful and meaningful way. I am one who is moving on even though I will not have my final check-up until November. I feel so confident after reading your article that I have booked a cruise for this coming winter. No sitting around, waiting to become ill ever again

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  33. Spot On Girl...Thank you for the validation~

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  34. Ann, I can't tell you how much your words mean to me. You are putting into words precisely how I feel every day. I was diagnosed with stage 2 BC two years ago at 33 and I have two young boys. Even though I try not to talk about it to other people, I am really scared but I desperately WANT to just enjoy each day. Thank you, thank you, thank you for your writing. I appreciate it more than you can know.

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  35. Thank you. Just THANK YOU, THANK YOU, THANK YOU.

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  36. This post definitely gives me some perspective as my best friend has gone through this whole ordeal. Thanks you, Many of us appreciate your words.

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  37. Ann,
    This is wonderful. I have written about your blog several times in mine (http://www.bidmc.org/YourHealth/BIDMCInteractive/Blogs/LivingwithBreastCancer.aspx) and will surely refer many women to this particular entry.

    I have been an oncology social worker for more than 30 years and have been treated for two primary breast cancers. Those experiences surely enhanced my professional credibility although I would have been glad to skip them.

    Your words are very much on the same themes as my book: After Breast Cancer: A Commonsense Guide to Life After Treatment. You are right that there is little help available for this period, and it is incredibly difficult for many women. I would be happy to send you a copy.
    Thank you for the work you do.

    Hester Hill Schnipper
    Manager, Oncology Social Work
    BIDMC
    Boston, MA

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  38. Wow, what a wonderful article and so true. It took me 3 years to get over the fear of onco follow up appointments. I could completely forget that I had cancer until that dreaded routine onco appointment. Then all the fear would come rushing back, afraid of what the routine tests would show even though I felt fine, because after all I felt perfectly fine when the routine mamo ended up with an IDC diagnosis. I wouldn't even keep the appointment cards because I didn't want to think about it. No reminder equaled normal life. Thanks for putting it perfectly into words.

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  39. Another astoundingly perceptive and moving piece Ann. I was in that place, and I have moved on. I think........ I look forward to part 2.

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    1. Ann, well said.
      I think the worst part of lymphedema is there is always a really prominent garment reminding me of cancer. Even when I take it off, I am waiting for my hand or arm to swell. It is easier in the winter, I can almost forget it's there, but the constant discomfort in the summer is hard. I feel stuck between the two worlds, I never got to go back to the healthy club exactly.

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  40. I am stunned. This has to be the best overview of having BC and what it is 'emotionally' to survivors. Incredibly well written. The best. TY.

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  41. I wish all my family and friends could read this...then, they just might understand. You have put into words what I have felt for so long long...well, for 5 years now. I will never be free from the fear...but I'm learning to live with it...in a happy and productive way. I have learned things in a new way since my diagnosis...for one thing....NONE of us get out of here alive. We all will die some day...of something. So, I go on...living day to day as normal as I can (I hate the phrase, "new normal")...living my life the best way I can. Most days, the fear is in check...and on those days when it isn't...I just let myself be afraid for a little while. Then, eventually it passes...but I know it will return again for another visit. I'm looking forward to your next installment. Thank you!

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  42. I have not had breast cancer. Friends of mine have and my 25 year old niece died of breast cancer, no one wanting to believe one so young could have cancer. I myself am dealing with cancer for the third time, none of them are related, so my venue is different. I had a significant surgery, have started chemo and will also have radiation. I will have followup labs and cat scans when this treatment completed to watch for return of the cancer. My cancer this time is pancreatic cancer. I just retired, and had three months of freedom from work ( a registered nurse of 43 years who worked as an ICU nurse for 27 years of those 43). I feel that this time the cancer is pushing me toward a new type of work and functioning in my community. I really think you have caught the essence of what a cancer diagnosis can do or not do in terms of changing our lives. I am so grateful for your honesty and communication to the public and also those who are faced with cancer as a diagnosis. Thank you for who you are. God Bless you every day. CM

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  43. Chickadee here. So miss having daily doses of Anne. So glad you are hanging tough.

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  44. Just seeing this post tonight, and I just posted about the "moving on" issue this morning. It's a very real issue, and you nailed it perfectly. I'm looking forward to Part II.Thank you for writing about this. It is enlightening for all.
    xo

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  45. Five years after the diagnosis, I am tired. My feet hurt all the time. I try to be brave because it could be worse...I could have cancer for pete's sake! I never regained my footing, and I have always been ashamed of this. I don't talk about cancer because I don't want to be one of "THOSE PEOPLE" the ones who are forever their diagnosis. So I plod along in a quiet shame that I have this life that I am only half living, and frustration that I am not 'doing it better'. I read your blog and come away more ashamed. But this post makes me take a look at myself and say, "Of course. PTSD." I found myself nodding and for the first time thinking I'm not some sort of freak.

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  46. What a wonderful article from a patient's perspective. The "happily ever after" is often scarier than the actual treatment. Thanks for giving a voice to what so many cancer patients feel. I tried to do this myself but you said it so much more eloquently.
    http://crabdiaries.com/what-comes-next/

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  47. so good, girl. you made me remember when my friend had cancer, it was so sad.

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  48. wow, what a moving post. i'm approaching my nine year cancerversary and i like to think i've done an okay balancing act between never forgetting and moving on. i have other chronic health issues that keep me tethered to the world of being a patient, but it's very different than my days of surgeries, biopsies, staging, chemo after chemo and the terrible radiation that wasn't rad at all except in that it saved my life (i have a rare genetic blood disease, porphyria - but survived stage III hodgkin's back in '04).

    being a cancer patient changes how everyone interacts with you. i love how you pointed that out. i was 20-21, in college, in a sorority, and had so many eyes on me. i had camera crews in the infusion center with me. a couple years after when i completed a triathlon it made news! seriously, "local cancer survivor races in triathlon."

    it's madness in so many ways.

    i like to think the positive changes that came into my being only via my cancer experience are still here. i am kinder, nicer, more gentle. i value the small beauties in life, i cherish the sweet simple moments.

    i laugh just as much as i ever did. i was funny before, i'll give myself that.

    and while i value what the experience brought into my life, i certainly don't miss those days. and i don't have any desire to ever relive them or get emotionally stuck there. for me, moving on has been a must. it's the whole reason i put my body through hell, so now i can enjoy the "and back" part of it all.

    God bless and God speed on your difficult journey, Ann. You tackle it all with grace, poise, love, and beauty. You are a true inspiration.

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  49. I needed to read this today--thank you for writing it so damn well! I'm only around 4 weeks out from surgery and just demoralized by some weird severe pain that's not being treated right (well, in my opinion) and wondering if I'll ever feel like myself again. Just spent 9 long years coming to terms with abuse and boundary issues and was just beginning to feel better about myself when I got my diagnosis. Ugh. But I swear I'm not going to get stuck here! The trick is to move on, but not in denial of issues. Move when you're done dealing and ready for the next chapter.

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