What’s hard to explain…

This period in our lives nobody really openly talks about. Because it’s hard, it’s internal and it as much as you want it to be, it kinda sucks that life isn’t just “back to normal.” Nobody fully understands this period of time unless they have lived it. And honestly, I don’t EVER want you to have to live it to understand it. But would like you to know what’s going on with us and most every other cancer survivor out there.

When somebody asks, aren’t you so relieved? Are you ready to celebrate? The answer is simply no, not yet. I don’t want to steal your joy for me, or your joy for any other family or friend. We love your joy. And we want your joy. And maybe we are a bit jealous of your joy. But joy just isn’t what we are feeling right now. Honestly, we are happy treatment is over and we are relieved, but only a little.

I desperately want to run and scream from the rooftops that yay, I don’t have cancer anymore. But I can’t. Because I’m triple negative, my highest rate of reoccurrence occurs in the next 2-3 years. Because nobody can officially tell me, without a shadow of doubt that there wasn’t a lone cancer cell that traveled somewhere else in my body. Because the fear of reoccurrence brings me to my knees. Every survivor has this fear on some level and we are all trying to figure out how to cope with it. Because if breast cancer metastasizes, that means it is stage IV and you are living with it and treatment until treatment options run out. And. That. Sucks. There are a tremendous number of women/men living with “mets”.

And I can’t scream happily because I honestly don’t feel like it. My body isn’t what it once was. I can go and do more and more, and I’m so incredibly grateful for that. But there are days that I’m tired on a level that I have never felt before. I have neuropathy in my feet and bone and joint pain leftover from the toxic side effects of Taxol. And while better, I still don’t have full range of motion in my arms and will be continuing physical therapy for a while.

I’m also adjusting to how I look in clothes. It’s different, and it doesn’t as much bother me as it is weird to see yourself without breasts. Low tank tops no longer mean a bit of cleavage showing, it now means they hang really low on my chest and my scars (that go all the way from armpit to armpit, minus one inch in the middle) are showing. And by the end of the day, the skin on my chest hurts from wearing a shirt.

Processing is hard and it can take a loooong time. Like years. When you are going through treatment for cancer, you may or may not be processing. Usually you are in fight or flight mode until you get through treatment. And when treatment is over, you are shoved out into the world with a lot of unknowns. With overwhelming concerns and fear. It feels a bit like Alice in Wonderland and I stepped through the looking glass. I can look back through the glass and can see everyone and everything how it was. But now that we are in wonderland, it’s all different and weird and nothing feels right.

Mentally, as my head clears, that means I’m processing. And holy shit, that’s some heavy stuff. I am alive and I am grateful for my life and this time with my family and friends. But I faced my own mortality in a way that shakes you to your core. Jason faced losing his wife, in a way that shook him to his core. My mom and dad faced losing their daughter in a way that shook them to their core. And Kate and Ty faced losing their mom, in a way they may not realize yet, but one day they will.

We are looking through the looking glass at how we once saw the world. Now facing how we now see our lives, our beliefs and the world. I don’t see it the same and I never will. I am however, extremely grateful for the perspective.

I want you to continue to ask how I am. But please understand when I don’t have the enthusiasm that you may expect. Because now you know. Extended compassion is needed with cancer survivors. I read posts and blogs and comments from women all over the world. And one of the common threads is the lack of support after cancer treatment is over.

I have had amazing support from family, friends and other fellow survivors and we are more grateful than I’m able to put into words. But not everyone is that fortunate. Support your friends, for years after treatment. Love them. Ask them honestly how are they feeling and let them know you are still thinking about them. Extend your compassion for them long after you tire from hearing their about cancer. Because even when it’s over, they are still living it every single day. You never forget, you always fear and you just find ways to cope with that along the way.

Even with all of the heaviness, I’m continuing to maintain a positive perspective. Though it is there, I will not allow myself to worry about reoccurrence all the time. When that thought pops into my head, I bring my awareness to it, say to myself, “stop.” And redirect to a positive thought and how grateful I am for this time I have now. Live in the present folks, as you never know what tomorrow holds.

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  • Reply carinsurance January 8, 2016 at 11:10 am

    It’s a joy to find someone who can think like that

  • Reply End of an Era | Chemo between Classes July 9, 2015 at 12:30 pm

    […] that may not have occurred before. Which is why I’m here to help :) (I recently read a post by Shannon Cox that addresses this same issue for breast cancer patients. It may also be helpful.) How did you […]

  • Reply Kelli Calcutt July 3, 2015 at 6:17 pm

    Beautifully written. I went to Chapel Hill last Monday for my 4 year check up. I still go through the same emotions. How did I even get renal cell carcinoma in the first place? Did they get it all? Will it come back? Thankfully and prayerfully…MRI, chest X-ray and blood work were all clear. I am relieved but I still am cautious. I try to still think positive and believe next year’s checkup will be the same good results. Love you Shannon and I am so proud of you. I totally could relate to your blog entry. Let’s keep on fighting and winning!

    • Reply Shannon July 4, 2015 at 9:13 am

      Thank you Kelli. I know we don’t get a chance to talk much, but I think about you all the time. I am so relieved that all your reset came back clear!! But yes, It’s just tough all the way around and hard or impossible not to worry. I know your future check ups will be all good! Love you too and I really hope to see you soon!!

  • Reply Jackie wheeler July 3, 2015 at 5:57 pm

    I have really appreciated your writings…they all have great messages for those of us who know and love someone with a serious illness. This one gives us a perspective we aren’t aware of because we haven’t walked in your shoes. So thx for being courageous and candid with your article. U are in my thoughts and prayers for great things in your future and most of all cancer free. Hugs to u and your family. A reminder…we r long time friends of George and Saundra…we kept Chris the night Jason was born…j

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