No one told me that getting on with life after cancer would be so hard

I met with a young patient recently, a woman who has been done with chemotherapy for lymphoma for close to a year. She was feeling well, and she had no symptoms of cancer, nothing that made her suspicious of a recurrence. After I examined her and reviewed her most recent CT scan and labs, I agreed. No recurrence. I wrote in my note, “NED,” the acronym for no evidence of disease.

As we were wrapping up the visit, I asked her if there was anything else on her mind, anything else she was concerned about.

There was.

“I still get really nervous and anxious before coming to see you and before each scan,” she said. “I was prepared for how chemotherapy would make me feel. I expected to feel tired, to get sick. What I wasn’t prepared for was how to move on with my life, without letting cancer take over. No one told me that getting on with life after cancer would be like this. No one told me that this would be so hard.”

And, to a large degree, I think she’s right.

We’re very good at getting people through chemotherapy treatments. Oncologists and oncology nurses are great at counseling on side effects, helping to manage nausea and other ill-effects of treatment. Families rally around the cancer patient during this time, providing much-needed emotional support and physical support. Friends – hopefully – step up to the plate and offer shoulders to cry on, hugs, personal experiences, and distraction.

But when treatment is over? Well, life gets back to normal. Right?

Hmm … not so fast. It’s just not that easy. That’s what we forget to tell patients. Getting back to normal, getting on with life, is harder than everyone expects.

Picking up the pieces of your life before cancer – before chemotherapy or radiation wreaked havoc on the body and soul – takes much longer than one might expect. With the end of treatment comes an upwelling of fear of recurrence, fear that because active treatment has stopped, the cancer will be able to grow again. There is fear surrounding each scan and each blood draw. Anxiety swells before each oncology visit.

We might have forgotten to tell you that this is all normal. It’s an expected part of the recovery process. The fatigue from chemotherapy will get better over time. The hair will grow back. The fear of recurrence will subside with the passing of the months.

Another thing that we may have forgotten to tell you? You will be able to get on with your life again after cancer treatment. You’ll probably be a changed person after your experience, but you’ll get back to normal. If not the old normal then for sure a new one. Your life will resume, despite cancer, beyond cancer.

Just be sure to rally the support during this time. You still need it.

Merry Jennifer Markham is an oncologist who blogs at Living Despite Cancer

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  • http://www.facebook.com/lodewijk.bos Lodewijk Bos

    Dear Dr. Markham,
    It’s not only the anxiety for each exam. Chemotherapy might hit much harder than expected, not during the treatment but afterwards. That’s why I started after 2 years my blog “Life of a chemo patient” http://www.lodewijkbos.com.
    Lodewijk Bos

    • http://twitter.com/DrMarkham MJ Markham, MD

      You are absolutely right. In addition to all of the psychological and psychosocial effects on a person, the effects from chemotherapy, radiation, and surgery can be long-lasting. Congrats on being cancer-free, and kudos to you for sharing your story on  your blog. I hope someone going through the same can learn from you!

      • http://www.facebook.com/lodewijk.bos Lodewijk Bos

         Thank you!

  • JPedersenB

    It’s also the reactions of people you know who know you had cancer.  It’s not always pleasant….

    • http://twitter.com/DrMarkham MJ Markham, MD

      I’ve heard that from my own patients, as well.

  • http://twitter.com/cancer2gether Facing Cancer

    Sorry about that double submission.

  • http://twitter.com/ddwebster Dana Webster

    Having been through cancer twice in the past 4 years, I can completely relate to everything in this article. For me, survivorship is the toughest part…..especially when all the friends scatter because you appear “well”.   

    • http://twitter.com/merrygourmet merry-jennifer

      Thanks for the comment, Dana. I hear that a lot — and it’s tragic. If ever there is a time for the support of friends, it’s during that time.

      (and this is @DrMarkham commenting — couldn’t get the Twitter login to work)

  • alipom

    Am going to post a link to your excellent post on our patients forum of Beating Bowel Cancer (UK site) and it’s facebook page as so many of our bowel cancer patients feel like this, that they’ve been left ‘high and dry’ when they get a NED at their consultation. I know from experience as do thousands of others that the ‘time between scan and results’ is just not a good place to be, so thank you for your post on this and I hope clinicians take it to heart when seeing patients in the consulting room!

  • Maura69

    Life is never the same as before cancer. Friends that you had before and supposedly during are unable to continue that level of friendship. The new friends that you do meet will never be able to replace the ones you lost, (whether through ignorance or fear, they are lost). Life is still hard because in the back of your mind is the reality that we never do know just what is in store for us. Remembering the fear and devastation, the pain and the tears make me fearful for each and every day. On the other hand I am extremely grateful to be alive and be able to enjoy life again. The biggest problem that I still endure is trust. Once that is lost it is extremely hard to regain. To all my fellow survivors God Bless and we are all in this together. 

  • Peggy Zuckerman

    Having had a Stage IV kidney cancer with lung mets (and you don’t want to hear the statistics) followed high dose interleukin 2, which has made me NED for eight years–also impossible statistics, I never forget that I had cancer.  Only in the past three years, with good reports all along the way, have I finally realized I might live a longish life.  But I had not had a mammogram, or gone to the dentist during a great deal of that time.  “Why bother, I’m going to die of kidney cancer, anyway”, was the voice in my head. 

    When death has knocked on your door, it seems to stay on the doorstep in the near shadows for a long time.  No one understands that but another cancer patient.

  • Samba120

    Unfortunately, cancer can recur and it will always be a threat.  I’ve read that 30% of breast cancer patients go on to metastasize.  To me, that is a very large number.

  • EmilyAnon

    To my fellow cancer survivors here,  your words are mine.  No matter how optimistic you try to be, that dark cloud hovering over you is your constant companion.

  • Maura69

    To Peggy Zukerman, my Breast Cancer was Stage IV and did metastasize to the bone, and yes death is always at the doorstep. As each day goes by and I thank God for what He has allowed me to enjoy I now find myself 6 years in remission. I enjoy as much as I can but the fear will always be there. God Bless all of you. 

  • entre.amis

    Essentially you just never look at life the same again. It’s like the rug has been pulled out from under your feet and you can never trust that it won’t happen again. It can make life and everything in it very precious, or it can make everything seem meaningless. What’s the point of ambition? Of hard work? Can you get into a relationship when you can’t count on the future being there? You can feel set apart, different from those who’ve never experienced what you have. It can be really lonely. I suppose Buddhism can be a help, as it begins with “life is suffering (because there is sickness, old age and death)” and then seeks to remedy the suffering through understanding and meditation. But I think it’s impossible to go back to life as it was before cancer — you can only move forward.

  • dawnstratton

     This is so true. Many of the folks I work with as a cancer counselor find that life after cancer is not what they expected. A lot of people find they need support to help manage the emotional rollercoaster that comes after treatment is over. I know I did! (Cancer survivor of 12+ years.) Thanks for this post!