The New Normal is Not For Me

I hate the term “New Normal.”  I hate it with all of my being.  The “new normal” is something that many people talk about.  It refers to what your life is like after cancer. Oncologists, psychologists, radiologists, (basically all the “–ists”), as well as fellow cancer survivors, refer to the “new normal” on a regular basis.  Every time I hear the term, it makes my skin crawl.

The “new normal,” is an oxymoron to me.  It’s like boneless ribs, a calculated risk,  or alternative facts.  By definition a “new” normal isn’t normal.  It is, however, a new reality.

Speaking as a cervical adenocarcinoma Stage 2 survivor, here are some of the things that people (both doctors and fellow Cervivors) have deemed as a “new normal” after cervical cancer treatment.

Loss of muscle and strength

Due to chemo, radiation and multiple abdominal surgeries I have little to no core strength any more.  I can’t carry the same things that I was able to do prior to cancer (including heavy grocery bags) or do the same cardio that I was able to (I still become winded if I talk and walk upstairs at the same time).  Most recently I developed severe lower back pain, which is due to my psoas muscle having been cut 5 times in the past 18 months.  I have been told that this is “just a side effect” of the lifesaving treatments and surgeries that I endured over the past two years.  I am not ok with this.  I want to be able to move the way I did prior to cancer, or at the very least, without pain on a daily basis.  This is my new normal?  No thank you.

Sexual dysfunction and discomfort

Treatment for cervical cancer often involves radiation or a hysterectomy (or in my case, both).  Both of these cause scar tissue which can build up in the vagina and make sex uncomfortable or in some cases impossible.  Women are told to use dilators to keep their vaginas open, but quite often sexual discomfort is just deemed as part of your new normal and something that you and your partner need to work around.  This reality should never be considered normal.

Bladder/Bowel Issues and Ostomy Bags

Because cervical cancer patients receive radiation and surgery so close to their bowel and bladder, quite often these tissues are damaged beyond repair, and in some cases, cancer spreads to these areas. I have undergone bladder reconstructive surgery, which thankfully was a success, so I did not need to have an ostomy bag (I have been spared this “new normal” for now.  However, I know many women for whom this is not the case.) Unfortunately, the surgery has left me with a smaller and more sensitive bladder.  I have to pee all the time…even when I have just gone to the bathroom.  Not normal.

Anxiety (over every small pain, out of the ordinary symptom and particularly before scan appointments).

After having cancer, every small twinge of pain, every weird mark on my body, every unexplained symptom becomes possible cancer.  Eye Twitching? Retinal Cancer.  Headache?  Brain Cancer.  Bruise I don’t remember getting?  Blood Cancer.  It is exhausting being this worried all the time.  But once your seemingly healthy body receives a diagnosis of cancer, you can’t help but think that your body will betray you again.  And now that you know what this betrayal means in terms of treatment, the anxiety becomes even worse. Being afraid of your own body is my new reality.  But it is not normal.

As I write this I worry that people will think I am not grateful for the lifesaving treatments I received.  I am eternally indebted to my oncologists and radiologists, urologists and surgeons.  They did what they had to do to save my life.  But I cannot accept my “new normal.”

I think people use the term “new normal” because they think it will make us feel better.  It’s as if the fact that many people feel this way or deal with these things makes them ok.  But it isn’t ok.  We live in a time where the advances of modern medicine are occurring at an astounding rate.  We shouldn’t be complacent that these things are just our “new normal.”  We can do better.  We need to let our practitioners know that these post-cancer issues, while they may be common, are not acceptable and should not be considered normal.  These issues are not simply things we need to learn to live with. They are the current reality for many of us, but perhaps if we all collectively stand up and say, “I am not ok with this new normal!” we will be heard and more research, time and money will be spent to make sure that the life of a cancer survivor isn’t so irrevocably changed that their entire sense of what is normal needs to shift.  The things I am dealing with now are my current reality, but I refuse to accept that they are, in any way, normal.

Read more about my story here:  https://cervivor.org/stories/ana/