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 ostomy supplies, such as 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/

My “New Normal” and the Holidays

I am still trying to figure out how to be around myself and now the holidays are here.  I am expected to be around all these other people.  What am I getting myself into?

Over the past year, I’ve been navigating a very new life after whirlwind treatment for metastatic cervical cancer. Immediately after finishing treatment, I felt broken. My normal life as I knew it was over. I didn’t recognize myself.  My face and body didn’t seem to be my own. Throughout much of this year, my recovery consisted of a lot of alone time; time trying to figure out how to be myself. A lot of the time was spent chasing information (and then trying to remember it), advocating for the HPV vaccine, regaining strength, managing menopause, going to physical therapy, and trying to quell pain and anxiety…seemingly all while sitting on the toilet. Thanks to pelvic radiation for all those bathroom trips! I still have so far to go that it’s hard to picture a day when I’ll be fully recovered and be my “normal” self. That’s okay— I’ll manage. I have no other choice.

I’ve developed a lot of social anxiety – I often feel so isolated from others in their mid-30s.  I feel like they couldn’t possibly understand how I’d suffered – how I continue to suffer. It takes a lot of mental energy to function in the outside world.  It is mentally and physically so much easier to stay home than to go in public and deal with being in pain or in embarrassing situations (especially if I eat the wrong thing).  It takes a lot of convincing to even physically get out the door.

I am grateful for the holidays; this time of year, really forces me to suck it up and get out there.  I have found that once I get out socializing, I feel better for having done it and it gives me confidence that it will get easier. I adore the people I choose to spend my time with and laughter heals.

There are still challenges.  When going to a holiday party or night out, do I just pretend that I’m fine? I am surrounded by people who don’t understand what it took for me to even get out the door.  People who didn’t have to take Imodium, remember a coccyx pillow, put on compression garments, and maybe even take an Ativan just to get out the door? Yes, I pretend I am fine and that none of those things are going on. When people say, “oh you look great”? I say, “thank you.” When they ask how I’m doing? I respond the way we have all been taught, “I’m good, how are you?”

I respond in these ways because, I truly believe, people mean well and are being kind and polite; I assume they probably DON’T want to know the state of my bowels this evening or the fact that I used a whole tube of concealer under my tired eyes. While I am there, I’ll order my weak cranberry mimosa because I want to be normal again, but my body can no longer drink OJ, non-carbonated beverages, or much alcohol. In an act of self-care, I’ll allow myself to relax and just be with my loved ones, eat food that I shouldn’t and pretend remember that cancer doesn’t have me!

While out, I strive to continue enjoying the evening, as though my body won’t revolt in horror at the first chance it gets.  I know that this time socializing will come with a cost, it does most likely mean that I’ll spend the next day elevating swollen legs, possibly wearing a diaper, and I remember that still won’t be too much different from any other day when I am home.

My advice to anyone dealing with similar issues as mine and dreading the holiday event calendar due to all of the managing we must do just in order to show up: Be kind to yourself and listen to your body. If it’s telling you to rest, then rest. Show up everywhere or cancel plans with abandon. Enjoy the moments however you choose to celebrate, or not celebrate, the season. And always keep wipes in your purse.

Learn more about my story here: https://cervivor.org/stories/mary/