Cancer and Treatment Fatigue

I am tired.

I think we all are tired. It’s no wonder because 2020 has thrown so much at us.

Last month on the news there was a story on what health experts in my area referred to as pandemic fatigue. It refers to people being tired of following recommended safety guidelines so strictly. As a result, they’ve let their guard down in terms of masking and social distancing. There is a spike in numbers of positive cases of COVID-19 where I live. People are being stupid. The local health expert said that through contact tracing they’ve learned people have contracted the virus when they have gone places without a mask. Guards have been let down when in small groups. People have become weary after seven months. Here we are at the end of October and Wisconsin has become a hot zone with numbers in the thousands for positive cases on a daily basis.

I’m tired of masking. I’ve planned a few more outings than in spring and summer because I want to enjoy the fall season before the cold of winter arrives. I seriously considered an outdoor activity where I knew there would be over a hundred strangers who may not be following all the safety guidelines while there. Well, I wanted to go. I’d be careful. It would be okay. I’ve been okay so far. Those were major rationalizations on my end. I decided I couldn’t go. No way.

I know it isn’t a contest between cancer and COVID, but many reading this have lived for years with cancer. The fatigue from years can’t compare to fatigue from seven months. Yet, we all can empathize because 2020 has been a rough year.

The National Center of Biotechnology Information (NCBI) is located within the National institutes of Health (NIH). The NCBI defines treatment fatigue as “decreased desire and motivation to maintain vigilance in adhering to a treatment regimen among patients prescribed long-term protocols.”

Treatment fatigue from ongoing cancer treatments absolutely counts.

I copied this next quote a while ago and thought I had copied the source. Upon finding it for this post, I see I didn’t get the source included. I’m sorry. I have searched in good faith to find it. If anyone recognizes it, please let me know and I will happily edit to include proper credit. With that disclaimer, here is a definition for cancer-related fatigue from someone somewhere:

The medical term for this is “cancer-related fatigue.” It is a feeling of physical, emotional, and mental exhaustion even though you are getting enough rest and sleep. Cancer-related fatigue can affect your daily life. And, some people may experience this kind of fatigue for months or years after finishing treatment.

Months or years after finishing treatment. I will never finish so I must endure.

Different drugs have different schedules of repeating cycles. The schedule depends on what drug is being given. Treatments can happen daily, weekly, bi-weekly, every three weeks, monthly, and quarterly. Oral medication is often prescribed to be taken daily. I believe there is a solid correlation of treatment frequency to fatigue. It’s been that way for me.

Aspects of cancer that are not treatment involved also cause cancer fatigue. There are office visits with an oncologist to schedule, labs involved, and prescriptions to keep filled. Scans and tests get squeezed into non treatment weeks and these depend both on a regular schedule and how things are going. Side effects are carried both visibly and invisibly. Even all the needle pokes for all the necessary reasons gets tiring.

There’s always something.

That something becomes exhausting.

One of the biggest something is when someone in the cancer community dies.

Other big somethings are progression, generalized anxiety, and getting through hard days.

It is just too much.

Breast Cancer Awareness Month has broken me a couple of times this year. I just can’t. I’ve been both reassured that there are always strong forces to keep walking the walk when I can’t and people who say they’ve got me when I need support. These friends recharge me.

Constant advocating wears on me like a frayed pink ribbon. What I do is small compared to the efforts of some of the women I know. I don’t understand how they do it because it appears they never rest. I know I don’t even see all they do. They amaze me and they have made big impacts. I have made a difference but it’s on a smaller scale. The advocacy hat serves a powerful purpose. I can’t wear it all the time.

My body needs time to rest and heal from cycle to cycle of each treatment. Sometimes it doesn’t feel like I am getting much of a break. Especially when fatigue is a major side effect itself. Rather than dissipating, it intensifies. The resting and healing in between cycles is hard on me because I mark time trying to ensure my issues with hand-foot syndrome don’t flare and trying to protect myself from COVID-19. I want to make the most of my time between treatments and I don’t feel I do.

Cancer and treatment fatigue goes beyond fatigue from a treatment regimen. There is emotional fatigue.

I am tired.

It does get harder the longer I do it. Appointments don’t stop. I’m never given much of a break. The grind is ongoing daily. I can never get away from it.

Cancer doesn’t take a day off.

It hasn’t stopped during the pandemic.

And yet, I’ve heard explanations regarding slowdowns said to my face “because of the pandemic” that fall flat on my ears. What I hear is that I’m not important and don’t matter after all. My house continues to burn but the firefighters are fighting a bigger fire.

Managing all my stressful emotions contributes to fatigue. My anxiety over the last eight plus years has increased. High anxiety over a long period of time stresses the body. A person cannot be on high stress mode all the time where they are constantly fending something off. Remember there is always something. I work hard to lower it during scary times so I can find some stretches of calm.

Scheduling my many appointments is another source of emotional fatigue. The schedulers overall do a good job, but they often don’t have all the facts or the facts they have are incorrect. Yet, they are the gate keepers that keep my calendar moving smoothly or create an additional and unneeded obstacle I have to clear. Billing and insurance complications raise the hurdles here, too. Over time, I have collected a couple of phone numbers of people who seem to know how to help me and make problems go away.

Not being treated like a person is one more area that weighs on me heavily.

I am tired of so much fatigue. I give myself breaks whenever I can. I laugh. I eat. I exercise. I enjoy nature. I look for beauty and comfort. And I keep on finding a way.

Always.

Author: Kristie Konsoer

I am a breast cancer survivor, living well with metastatic breast cancer since 2012. This blog is a place where I can share thoughts and ideas on how I feel perceptions of cancer must change, and how I am finding a way to live with strength, hope, meaning, resiliency, humor, and hopefully a little wisdom.

13 thoughts on “Cancer and Treatment Fatigue”

  1. Hi Kristie,
    Mask fatigue. All-around pandemic fatigue. Cancer fatigue. Pinktober fatigue. Election fatigue. General life stuff fatigue. It’s a lot for all of us to handle these days. Those like yourself living with MBC are far too well acquainted with the heavy, ongoing, inescapable fatigue – physical and emotional – that comes along with it. Like you said, it can even be hard to rest when you’re so tired. It’s hard to get both the physical and emotional rest that’s needed. Sometimes you manage to get one but not the other, if that makes sense. Thank you for articulating your thoughts on fatigue so well. May we all find as many restful, restorative moments in the days, weeks and months ahead as possible.

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  2. Thank you for sharing; I don’t feel quite so alone in my enduring battle to keep my head above water both physically and emotionally. I, too, like the idea of finding more restful and restorative moments.

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  3. I know what you mean – the fatigue is beyond physical. It’s emotionally draining knowing – yes there’s another treatment, another visit to the oncologist, more scans, friends leaving us, friends entering into our “club”, books, podcasts, tweets, conferences.

    A day without cancer would be nice wouldn’t it be great to wake up without a mouthful of pills and then what? The big looming ugly potentially life threatening social environment on top of it all. Stop the merry go round please.

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    1. It’s the first few moments as I’m waking up that I feel are still mine. The whole day is ahead of me and nothing cancery has happened yet. We do the best we can and carry on. Carry on, my friend. ❤️

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  4. Well said. My wife has been living this for 9 years and this is on point as the fatigue never goes away and increases every three weeks she goes for treatments

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    1. Nine years is a long time. Fatigue affects us differently for different treatments. Then there is the cumulative fatigue from living with cancer for many years. There is fatigue for the caregiver as well. I didn’t write about that because I am my caregiver. My best to both of you.

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  5. Totally agree with the fatigue. I’m on my second round of chemo and finding the fatigue makes me feel like the walking dead, a zombie state of mind. Something switches off, either brain, body or both and there’s nothing I can do about it but sleep, and then wake up feeling the same as before I slept. Its a motivation killer. But we carry on. Sending hugs and zzzz’s, take care xxx

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