It’s been almost a month since I’ve been here, and to tell you the truth, I thought about never coming back.  Now that treatment is over, all that is left is me.  And I’m a mess.  I didn’t want to share my mess because it makes me feel vulnerable, and I’ve had quite enough vulnerable for the time being, thankyouverymuch.

I also didn’t want to examine what I’m feeling right now enough to blog about it because, you guys, it’s kind of like being 14 all over again — without all the hormones, of course.  Estrogen is, obvs, my kryptonite.  I can go from content to depressed to elated to super anxious in an afternoon.  It’s tiring, and it’s even more tiring trying to figure out the feelings behind the feelings.  So lately I haven’t even been trying, partly because I’m also tired of thinking about cancer.  I’ve just been riding the wave.

To be fair, it’s not as extreme as I’m making it sound.  Generally, I am happy, but I’m not as level as I once was.  I really think it’s all par for the course in life-after-cancer, but I’m not sure everyone recognizes that there are still struggles to be had after you “beat” the Sumbitch.

I went to my husband’s 20 year class reunion (He’s pretty much geriatric, I know. 🙂 )  last weekend and met a lot of really cool people who had been following me via Josh.  As nice as they were — like truly loving and supportive  (Thank you, AHS class of 1995!) — they said a lot of really weird things to me.

“I’m so proud of you for beating cancer!  You did great!”

“You kicked its ass!  Way to go, girl!”

“I’m so excited for you!”

At the last one, I looked around to my brother and husband to see their faces.

This (super nice and well meaning) guy just said he's excited for me, you guys!  Can you BELIEVE that?   Guys, DID YOU HEAR HIM???
This (super nice and well meaning) guy just said he’s excited for me, you guys! Can you BELIEVE that? Guys, DID YOU HEAR HIM???

But there was not a crack in either of their smiles, not an understanding eye roll to be found.

And therein lies the problem for me in blogging about life-after-cancer.

As much as I appreciate the sentiment — and I really do — you would NEVER tell, like, an assault victim that you are so excited for them.

You know, like, girl gets held up at gunpoint, threatened, beaten down, and robbed.  She makes it out alive.  Then you tell her that YOU’RE SO EXCITED FOR HER.

Way to go, girl!  You kicked ass!

I’m so proud of you!

And then, a year later when she’s still suffering from anxiety and depression on account of the event, no one says, “Oh, I though she’d be happy now.  I mean, it’s over.  She beat it!  What’s her deal?”

Because I’ve also heard a few forms of that last statement as well.

And I get it.  I probably would have thought something similar before my own dance with the big C.  You’re DONE (not realizing that a cancer patient is never “done”)!  It’s all parades and confetti in the air now, right?!

Well, frankly, no.  I feel like the girl who has recently been violently mugged.

In the days after diagnosis, I remember trying to explain what I was feeling to my husband.

“It feels like someone is holding a gun to my head!” I said with every nerve ending in my body on high alert because that’s the only way you say something for about a month after you’ve been diagnosed.

Cancer certainly threatened my life.  It beat me down, with a scalpel and chemo-style.  And it definitely robbed me.  Of so much more than I’ve copped to here on this blog — money, sex, self esteem, the surety of a future.

But here’s how I can best explain the fear in life-after-cancer.

What if that crazy gunman left the girl to live but whispered in her ear, “Watch your back, dear.  I might come back for you.  It may be tomorrow, it may be in five years, or it may be never.  You’ll just have to wait and see.  Just know that whatever you do, you can’t hide from me.  I will always know where you are.”  Creepy, no?

And then, she has to WATCH NEWS STORIES OF THIS PSYCHOPATH KILLING OTHER PEOPLE!  In movie after movie, this gunman shows up.  People think she wants to hear stories of others who’ve met the Sumbitch.  It’s all around her.

So she joins a support group.  Those people understand, but now she has to WORRY ABOUT THEM TOO.  The gunman told them the same thing, and statistically speaking, he follows through one out of three times.

You wouldn’t tell that girl that you are excited for her.  You would realize that she’s still “fighting” a battle.  That what she went through was straight-up traumatic.  You would be scared right along with her because it’ll never be over for her.  A shadow is never just a shadow anymore.

So that’s my truth.  A headache will never just be a headache, and my worry is forevermore.  Although, I’m sure as the years go by (and hopefully, the years do go by!) these feeling will dull.  It’s a little intense, I know, and that’s why I haven’t been around.  I didn’t really want to put words to what I’ve been feeling because then I’d have to think about it and stuff.  Instead I’ve just been pushing it back and letting it pop up in weird ways in my life like in my spending habits or in me not taking care of myself.  And after I did do the thinking, I was hesitant to SHARE it with the internet at large so people could throw their two cents in because that’s always super fun.

The thing is that you guys will never know what it’s like without someone telling you (unless you’re here too, which is a bummer) so that’s what I’ve decided to do: let you in on my mess.  Pretty much so you know that being excited for someone who recently “beat” cancer is super sweet but also really weird.

36 comments on “I just can’t seem to share in your excitement.”

  1. I think you are in a very tough part of the journey. When the chemo et al. are going on there are Things To Do and Instructions to Follow. And then you’re dumped back into your life with a hearty “Carry on!” and all those emotions that got tamped down when you were being a brave little soldier start coming up and needing attention. Five years post-treatment I feel much more present in my life and the shadow of cancer seems smaller. And yet, I just had a bout of phlebitis in my mastectomy arm and that set the bells off in my brain for a little while. I’m still better than I was 2 or 3 years ago. And I still have the feeling of life being too precious to waste. I’m glad for that bit. Thank you for writing. What you say is important for people to hear.

  2. Welcome to the survivorship world which to me is so uncertain and the most difficult part of this cancer mess (reason why I started blogging). People will believe it is over and that you should move on. They also need to believe you are well because they wouldn’t be able to cope otherwise. It is just too heavy for them. You will feel like you are bouncing back and forth between two different worlds – I certainly feel this way. Some relationships may change because priorities and expectations change. Happened to me.

    You defined your feelings well and I can relate. It is like a ghost which haunts us from time to time and we don’t know when it will attack us. And yes, I worry about others too and it’s kind of too late to walk away now because I care too much. I was told by more than one person that maybe I should stop talking to other cancer patients because it was unhealthy for me now that I am “done” with cancer. The thing is I will never be done with cancer. These patients are the only ones who understand. The people I now relate to. Although I am not happy so many of us are in this mess, I am grateful to receive the support I get from all of them. A support like no other.

    It’s OK to not think about cancer sometimes and to allow some room to breathe. To take a break. I certainly try this exercise from time to time. But I also feel like I need to be guarded and the one way to do this is to give up some level of denial.

  3. Heather…Our Heavenly Father tells us “Do not be afraid for I am always with you”….so give it to God and let Him take away all your worries. I love you!

  4. Beautifully written. I, also, am a breast cancer survivor. It’s still weird even typing these words in the context of describing myself. I had a double mastectomy, finished my chemo treatments last Nov and two weeks ago finished my Herceptin treatments. And yet, there are still moments when I refuse to accept this reality about myself.

    I think the hardest part of surviving cancer is surviving cancer. I always thought that after the surgeries and treatments, I would feel normal again and everything about this would be behind me. But that is the farthest from the truth. The journey is just beginning. Survivorship is a DAILY decision that we have to make.

    Unless you have been thru it, it is difficult for others to understand. The friends and family who were supportive during my treatment no longer feel I need the same level of support. I mean, why would I, right? I’m cured. Everything is awesome. I should be so thankful I get to live. And yes, I am thankful. I’m thankful every freaking morning when I open my eyes and jump out of bed. But just because I survived doesn’t mean my life is now completely awesome. I’m still mourning the death of my old life even if my old life was completely boring. At least my old life made sense to me. I’m still trying to figure out how to live my life now in this new context. And I struggle with it.

    I think you are absolutely right that people mean well and I know they have good intent but sometimes, the words they use pierce right thru my heart. And I remind myself it’s because they just don’t know. They don’t understand what you have been thru.

    So thank you for sharing what you did. I know I am not the only one who feels the same as you do. I am sure there are many others as well. Thanks for the courage to put yourself out there and give voice to these feelings. From one pink sister to another – we may not be on the same path, but we are certainly sharing in the same journey.

    • Thank you Michelle for making me realize exactly what I am feeling. I am mourning the death of my old life. I haven’t felt like myself since my treatment and have not been able to put my finger on it until I read your post.

  5. This definitely hit home with me today. So happy to have my hair growing and all, but now I have this constant worry, what is growing in my body that I’m unaware of?

  6. Thank you, thank you, thank you for writing this- from me and my whole “stalker” support group! This is the best analogy I’ve ever seen and makes it so clear to those “normies” out there without cancer. I’m on year 2 of treatment for recurrent triple negative IDC. Even when I had a recurrence I had so many people saying: You’ll beat it again! You can do it! I believe in you! You’re a fighter! When I really need people saying: holy shit, that’s scary as hell, I’m so sorry! Thank you for giving us a way to explain what we’re feeling to ourselves and others!

  7. Dear Heather,
    I was was excited to see your post and sure do hope that you keep blogging. I am in the same boat as you minus the chemo. My husband commented this morning that it has been about a year since I first found the lump. A year later multiple MRI biopsies, scans, surgeries, rads, follow ups…….. My sister in law was diagnosed with stage 3 about six months before me. She just finished reconstruction with a diep on one side and implant on the other. She told me she had not even thought about the possibility of reoccurrence. I can’t stomach the thought if going through all of that. So many of the thoughts you just shared run through my head too. I’m a pediatric cardiac icu Rn. I do way too many reviews of literature. I have spent so much time with families during the end of life. I love what I do but feel so desperate for a change away from nursing which I think contributes to my distorted views of death lurking around the corner…… Ugh, just got call to go into work…. Please keep writing and sharing. It helps those in the boat, on the dock and those who have no clue.

  8. Thank you. Well written and powerful.

    I am the spouse of a survivor and appreciate your expression of feelings my wife must deal with every day. They haunt me as well. I am so grateful for her positive prognosis, for her incredible strength, and for her amazing presence in our lives. I am excited for our future.

    But, fear of this predator is always there. It sneaks up in the middle of the night, when I glance at a picture, playing with our kids, seeing her with friends, working with clients. It is not always present, just never far away. You start to wonder if your stomach will ever feel normal again.

    I know I am unable to fully understand the depth of emotion with which my wife has to deal. And I push it away, try to ignore what is always there. I am not always the best support, sometimes because I am hiding my own fear and emotions.

    I so appreciate your sharing your experience, the comments from others, and venues such as your blog. Your putting thoughts into words is a gift to many others perhaps unable to share those thoughts with the people in there lives. What you do is important. Thank you.

  9. Great post Heather! Thank you for sharing what you are going through. Over the last few weeks I’ve actually been writing about the difficulties of transitioning to a new ‘normal’ once cancer treatments stop on my blog as it’s something all of my clients go through. I have shared your story with them today to let them know that they aren’t alone.

    Keep writing hun because your blog posts are truly worth sharing! xo

  10. So glad I didn’t say any of those things when I met you and your darling fam yesterday at RR! Whew…Again, it was lovely meeting you. Much love & good vibes!

  11. Heather your writing of this time after cancer is eloquent. Yes, we still don’t talk much about all the different facets of life after treatment and I appreciate you putting yourself out there in the midst of feeling vulnerable. There is much to be learned by your physicians and health care providers as well as family and friends so I thank you for helping to enlighten those who touch so many peoples’ lives. Great Gratitude for just finding your blog.

  12. Heather, this is exactly how I have been feeling! Only, as usual, you said it with grace, beauty, raw honesty and just the touch of humor that I needed. I can’t even say what I intended to because this post resonates with me so much. Thank you for writing it. Thank you for being you.

  13. Beautifully said and brutally honest. I felt the same way after treatment and couldn’t quite shake it off for the 20 months I was “cancer free”. Unfortunately, it did come back for me but I have found a way to combat those horrible feelings–raising awareness to metastatic breast cancer. I won’t share the statistics with you as I’m sure you are completely aware of the boogie person lurking around the corner, but we “mets” need your help and the help of others with an initial diagnosis. Please visit my webpage at http://www.onewomanmanylakes.net. I am swimming lakes to raise funds and awareness for the forgotten disease. It may not help me but it will help my daughter and eventually the next generation.

  14. I’ve been waiting for this from you. I knew it was coming. I just didn’t know when. I also wondered if you’d write about it. I’m glad you did.
    Cancer is a bitch. We can’t thank it, we can’t sugarcoat it and we can’t embrace it. It came uninvited and nothing would please us more than to see it check out permanently. That’s not reality for most of us, and as stated, even when we’re given the all clear, we don’t believe it. There’s reasons for that. Only after you’ve “been there” do you understand those reasons. When I had my first recurrence, and with every test after that I likened it (in an email to a writer friend of mine who was the only one I really spilled my guts to) to what I’ve read about POW’s. Their captor yanks them up, takes them outside, puts a gun to their head, pulls the trigger and the chamber is empty. It messes with their minds. This is how I’ve always felt about the many, many tests we go through. When will the bullet be in the chamber? It’s crazy making some days. And who do we share that with? Our family doesn’t understand, our friends don’t understand either, and why should they? We can barely articulate it ourselves. We try to spare people from our innermost thoughts. We’re not pessimistic or Debbie Downers or anything of the kind. We’re just trying to get to some sort of good groove. It ain’t easy. Thanks for this post, Heather. I read several blogs and belong to a couple of support groups. I’m stage IV. Imagine how pissy we all can be. We’ve discussed this subject at length. Your blog post today was one of the best I’ve read. You’ve got the gift and you’ve got just enough edge. I like it.

  15. The after effects were super tough for me. I did a lot of work in art therapy, counselling and on a healing retreat. It was truly as you describe. And then my attacker returned as I was the 1/3. I am still trying to regain some sense of security the second time round (though in treatment indef) and, surprise, it’s even more difficult. Survivorship is so complex and nobody or nothing prepares you properly. I am thankful that you share your feeling about all this because it’s honest. And others are out there that may be too ashamed to admit it’s not just a big celebration after treatment ends. It’s one big hot mess if you ask me.

  16. Not sure it is a help or hindrance but absolutely EVERYbody goes through those feelings, you know. I’m working on blogging my support group experience right NOW…struggling with being honest but not insulting. Poignant but not depressing. Pissed but not ungrateful. I read what you and others write and it’s literally like we copy one another. It is because we are all human…experiencing grief and loss, a predictable process, time tested, comfortable, and well worn. So maybe that helps just that tiny least little bit? Helps to know you’re not dysfunctional I hope, well not because of cancer anyway 🙂 Namaste!

  17. Thanks for letting me in on your mess. I have the same mess and worry about the virtual gunman showing back up. Most days, I feel positive and happy about the future. But if anyone said they were excited for me, well, I can’t imagine how I would react.

  18. Thank you so much for writing this post. Seeing my own emotions painted so clearly and vividly by the words of someone I have never met was an amazing and comforting experience. Your writing is so hearfelt. Thank you for reminding me that, even in those lonely moments, there are others who will understand.

  19. In the past my one relative have breast cancer when she start treatment after one month her head hairs start falling and she was scared and every time crying after few days nothing on her head. When she finish her treatment her hairs come back and then she feeling well.

    Otherwise nice posting.

    • Do you ladies change anything to help with that? I am wondering if I need to change my diet, exercise like crazy, remove alcohol…..is there ANYTHING we can control? I am starting to feel so overwhelmed

      • Didn’t we all wish we knew about the KELP, SPIRULINA, CHORELLA and IODINE, BEFORE WE HAD BREAST CANCER, since wasn’t there research that stated that things such as IODINE and VITAMIN D were supposed to PREVENT BREAST CANCER??????????????????????????

  20. So Ive had this email in my inbox for almost a month because I didn’t want to read it. The struggle of getting back to life and work is hard.I always had another treatment or surgery planned and now I don’t go back to the doctor for 2 months, it was so easy for my to transition from my old life to my cancer life, but the post cancer transition is way harder! Glad to know I’m not the only one that’s really sturggling! 🙁 hopefully this will all get better soon but for now I’m just trying to keep on moving! Thanks for putting yourself out there, I really appreciate it!

  21. Thank you so much for this one. I needed it. It is the stuff I’ve been feeling lately but haven’t been able to express. I’m finally crying about it all right now, a nice emotional release! Tomorrow I’ll be nicer to myself. I’ll be more patient and loving and give myself a break. I think I just crossed a line and made a tiny breakthrough. I’ve been so very judgmental towards me, grouchy, angry, sad. I’ve expected me to be perfect, better, especially since I didn’t EVEN have chemo, JUST a bilateral mastectomy…JUST.

    B. R. E. A. T. H. E.

  22. Just a newbie here Just had surgery a month ago and still don’t know what else they will do to me. I’m a Lunch Lady at the school here ……tonight the Volleyball team had ‘Volley for the Cure’ Lots of raffles and 50/50 drawings to raise money for ‘the cure’ , at the end of the announcements thy asked all who had Survived Breast Cancer or Fighting Breast Cancer to please stand. It was not something I wanted to do! My friend said ‘stand up’! All the kids were waiting for me to stand…….so I did…….but I really didn’t want to!

  23. Ahhh… So glad I found your blog! This post really puts my deep emotions into words. Thank you for that, I never knew how to explain my feelings, or the reasons I flip out so easiiy these days. Btw, I also finished herceptin in May 2015, and I am also the mother of two little girls ( 3 and 21 months). I was diagnosed also while breastfeeding my first, but pregnant with my second at the age of 36, so hello! , I know EXACTLY what you are going though). Take care!

  24. I’m thinking breast cancer could be viewed as a “sneaky bastard” of a terrorist who may attack you when you least expect it and even ISIS would have nothing on it and maybe we should live in hope that research would one day give us what we needed to defeat the “cancer terrorist bastard” once and for all.

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