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Post Cancer Post Traumatic Stress

During my battle with lymphoma, my focus was on wellness. I could not think about anything else but getting well. I didn’t let myself plan for the future or months ahead. I was hyper-focused on enduring chemotherapy, staying away from germs, and getting to my goal. A cancer patient longs for one word: remission. The word carries so much weight with it. Remission means wellness. Remission means life.

What is normal?

I was not prepared for what that word would mean to me. I had waited so long to hear it and when I was told I was in “complete remission” I was dazed. The weighty word hung there. I am well, but I don’t feel any different. I thought I would instantly be back to normal, but I don’t know what normal is anymore. I don’t know how to go back to who I was before cancer. My life will never be the same. Wellness is a journey beyond remission. It is a healing of body and soul that takes time.

When I started my chemo, I looked well from the outside. Then slowly the medicine that would kill my cancer began to take its toll on my appearance. I am worse for wear. I barely have hair. I am pale and my eyes are drawn. One good thing is I lost some weight I had been hanging on to since my kids were born. I look like a cancer patient, but I don’t have cancer.

My world stopped but others moved on

Friends started reaching out when they heard news about my remission. There is an expectation that if I am well I will return to my life immediately. It takes time for the body to recover from chemo. It takes time for the mind to accept all that has occurred. I still have to get my neutrophils back to acceptable levels. I am not quite ready for the world. I will start radiation soon to prevent the return of the lymphoma, but my cancer is gone. The chemo worked.

I am grateful and relieved, yet I feel overwhelmed. I have missed so much hibernating at home. I have missed my roles in the community, events, and games. The lives of those around me, my husband, children, and friends have moved forward without me. While my world stopped, the rest went on. I was fighting my battle with cancer and everything else kept going. Now I am not sure where I fit in.

The challenges of survivorship

There is a sense of responsibility to those who do not survive their battle. The trauma of the cancer journey leaves a survivor with an overwhelming fear of reoccurrence and pressure to live life fully. My heart is full for my second chance at this life, but now I need to figure out how to live it. I will start with the simple things. I will live each day the best I can one at a time.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Carolyn B
    2 months ago

    I’ve had a bunch of cancers and the one thing I have learned is that this cancer journey is sort of like grief. It takes time, lots of time, to actually function in a way where cancer doesn’t rule your life; is not one of the central foci of your life.

    After my first breast cancer I think it took 4 years before I didn’t think about BC Every. Single. Day. My second breast cancer was eclipsed by follicular non-hodkin’s lymphoma (one of the incurable ones dx’ed with both the same year) which was qualitatively different emotionally due to the no cure aspect of the fnhl.

    What I did find though is that like grief, over time, the periods of intense emotion become shorter and shorter and further and further apart. You can still be unexpectedly (or expectedly) triggered, but overall I am finding that (even though I know the fnhl will return) my life isn’t as ruled by cancer as it once was. (That being said I have a check up in a bit less than a month and “scan anxiety” is starting to poke around the edges of my mind). It isn’t on my mind much of the time, I am not reminded of it with every little thing…

    It’s not that you “put it behind you” so to speak, rather life slowly becomes that cancer is what you have (or have had) and it is not who you are; it is no longer the center of your life most of the time (or at least while you are in remission). It is still a part of you, but the other things that are also a part of you too will slowly become more central in your life again and the cancer part will start to recede and occupy a space that is more manageable in size and impact.

  • Dan122
    2 months ago

    Yes, you got it all. I also have FL. We should remind that 10 to 15 percent of people just get natural remission. And in 10 years drugs will be better. So this “FL can’t be cured” is not so conclusive. At least that is the way I take it. I have a refractory disease, but I decited to get cured one day.

  • Racheli Alkobey moderator
    2 months ago

    I relate to this 10000%. Thank you for sharing your truth in regards to PTSD. I hear you when you say “I need to figure out how to live it”.
    I work for a cancer organization and am currently 3 years in remission. In our meeting yesterday someone spoke about someone that came to our organization because they relapsed after being 4 years in remission from the same cancer I had. It was a wildly sobering moment and I know that I can’t sit and dwell in that reality but I think it’s also important to KNOW what the possibilities are… Anyways… end rant. Thank you so much for sharing.

  • Yolanda Brunson-Sarrabo moderator
    2 months ago

    Thank you! I’m finding myself in a whirlwind of the stories of those whose cancer returns. It brings you into a space of despair and fear, but we can’t live our lives like this and must bring our selves out of the mist.

  • Ann Harper moderator
    2 months ago

    I agree. We don’t know what tomorrow will bring, but we have today. I try hard not to dwell on the maybes. Those possibilities will only get my time when or if it’s needed.

  • Ann Harper moderator
    2 months ago

    My daughter Crystal also felt a bit like you do. She was still ‘Crystal’ but she was Crystal after cancer. She wanted people to treat her normally, but she was different and they knew it. She too has a stronger zest for life and has changed a lot of things. Overall, she seems to be happier and I’m glad.

  • Ronni Gordon
    2 months ago

    Hi Amber, Thanks for this honest post. I think it will help readers who might feel the same way but feel bad about feeling that way, if that makes sense. It does get better, but it takes time.

  • Yolanda Brunson-Sarrabo moderator
    2 months ago

    I hear you on all levels; However, with that said we have to live life in a new day. Yes, thoughts will rush right in but we can’t start doing too much questioning and try to grasp where we’re at in the moment.

  • Ann Harper moderator
    2 months ago

    I totally agree!

  • bluchs
    2 months ago

    Amber Thank You!
    PTS, This is very real for all Cancer Patients.
    Chemotherapy has also changed my life.
    I spent 35 years working in long term health care so germs have always been on my mind.
    But after getting Cancer, germs became my enemy, and I witness, how unsanitary 99% of the population, actually is, WOW!
    I have hand sanitizer in my care, I carry it in my pocket.
    I never go out without wearing a mask, Never.
    I see people, use the rest room and not wash their hands. Sneeze into their hands and then touch everything.
    Gas pumps, ATM’s, etc. ( all are germ infested )
    I also lost a lot of weight, now I look very sick, I look in the mirror and I do not know the person looking back at me.
    Before I got sick, I looked in the mirror and I saw a thinner version of my dad, but now??? I don’t see myself any more.
    My word has stopped for me, now, I just want more time to share with my son and grandchildren and friends.
    Chemo, radiation etc. I have done it all, now they want to do more chemo, I need a stem cell transplant, but I am not strong enough??
    So the Challenge to Survive, is so very real for me.
    PTS, Wow, I can be just sitting, driving, trying to sleep etc. etc. and all of a sudden, I get tears in my eyes, I start reliving a moment in the hospital, or a time, I almost died, it Sucks!
    Challenge to Survive!
    I have accepted this challenge, I continue to do my best to fight on, and I still hope and Pray for more time?
    Never Give Up, Keep on Trying!

  • Ann Harper moderator
    2 months ago

    You are definitely a fighter. Hopefully they will find something that will help or you will regain enough strength for the transplant. As always, sending prayers.

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