Running on Empty – Coping with Cancer Stress

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Nobody realizes that some people expend tremendous energy merely to be normal. Albert Camus

For those of us blissfully past the cancer diagnosis and treatment stages, the outward signs of life as a “patient” are long gone. Our hair has grown back, we’ve recovered from surgeries, and our scars lay hidden under our clothes. We are certainly healthier, and we should be happier, right? But the transition from patient to cancer survivor is not an easy one and the new normal brings its own cancer stress.

Even for prisoners, the re-entry phase into normal society is usually gradual, but such is not the case for most cancer survivors. Family and friends want to return to normal life as soon as possible, and who can blame them? The cancer survivor wants that too, of course. But what we want is not always what we are capable of achieving, which causes even more cancer stress (and often, full-blown cancer anger.) After all we have been through, we are running on empty and only capable of so much.

What is “normal” after cancer, anyway? Now that I must visit my oncologist every six months for the rest of my life, it’s become normal. Unfortunately, it’s also normal to be anxious before each visit. My last visit was the worst, because I thought I had a small lump in my one remaining breast. I waited the two weeks between the discovery and the appointment, certain it was nothing. Of course, by the time I got there, I was a wreck. Not telling anyone, to keep them from worrying, worked fine when I was in denial. But, it was really awful when I was in full-blown cancer stress.

And what about the yearly mammograms, which have caused panic for two years running? Both times I was called back for more tests, thus re-enacting Cancer Year One. How do you process the new normal cancer stress when it feels exactly like the patient cancer stress? Keep telling yourself you’ve got all kinds of support you didn’t have the first time, etc., etc., etc. Still…..I am stressed out.

Over the past several months, I’ve been feeling a malaise which isn’t depression, but steers well clear of happy. It took me months to realize that the culprit is most likely the tamoxifen I’ve been taking for the past 28 months. I’ve been sleeping very badly for a long time now, sometimes waking up three to four times a night. That too is becoming normal, which is why it took me so long to realize it probably had something to do with my unhappiness during the daylight hours. I’m still figuring out what to do about that.

There’s also the physical side-effects of my surgeries, which cause pain in my abdomen. No one can see it, so no one knows about this cancer stress. It’s my new normal and mine alone. Did I mention cancer loneliness as another cancer stress?

Finally, don’t get me started on the cancer stress caused each October, when pinkification falls on you like an avalanche of kitsch. And, because I know I’m complaining, I’m cringing with survivor’s guilt, yet another cancer stress. I know how lucky I am, especially as compared to so many who are struggling with so much worse. I just wish none of us had to suffer the life-long effects of our cancer diagnosis.

It’s so easy to fall into the dark side of the new normal, where running on empty is taken for granted because it’s just the way it is now. I have to keep trying to focus on yoga, breathing, writing, mindfulness, exercising, and zentangle art to counterbalance this effect. Is your new normal taking all of your energy? What do you do to reinvigorate yourself?

Survival > Existence,

Debbie

Image courtesy of LulaTaHula

Comments

Caryn Bowers's picture
Great BLOG!!!!! Nobody talks

Great BLOG!!!!! Nobody talks about the Survivor’s Guilt or the Post Tramatic Stress Disorder which I was diagnosed with last May. There is no back to pre cancer normal. Your body is so filled up with meds…..it becomes challenging to kn…ow what “normal” is anymore….I am so GRATEFUL to be alive!!!! But, it is new territory to be a “Survivor”. Everyone’s journey is so different. I thank God everyday for my family, friends and my doctors.
Debbie's picture

Forging Ahead

Caryn:

Thanks so much for reading my blog and taking the time to write a great comment. I so agree that there is no going back to the old normal. My entire cancer experience has been shaped by gratitude, but everyday I am still trying to figure out the new normal. I guess that’s the journey we’re on. Glad to be on it together!

Survival > Existence,

Debbie

Coral's picture
Thanks for sharing your story

Thanks for sharing your story. I am a 1 year survivor and understand completely!

Debbie's picture
I Would Love to Hear Your Story Too

Coral:

I think the one thing we all have in common is an understanding of how much having cancer has changed our lives. Thanks for understanding and I look forward to hearing your story!

Survival > Existence,

Debbie

Elaine Schattner's picture
Thanks for this wonderful

Thanks for this wonderful post, Debbie

Debbie's picture
My Pleasure to Get the Conversation Started

Elaine:

You are very welcome. Sharing my feelings about living with cancer with others who get it has helped me heal in so many ways. It doesn’t make the losses go away, but I find it makes them more bearable.

Survival > Existence,

Debbie

Rann Patterson's picture
Thank you for telling it like it is –

I loved the quote by Albert Camus. That has been my mantra for the last 20+ years. I met my oncologist on my 26th birthday, was single and worked as an Admin. Asst. for 11 years full time. All the while trying to cope with, and maintain chronic lymphatic edema in my legs. In 1983, no one knew what lymphedema was, not even most doctors.

My uncle happened to work at a local medical supply store, and paid for my first compression support stockings. I understand PTSD. And it it made worse when those closest to you just don’t – or can’t – understand. Before the Internet, I wrote letters to doctors and various orgs. I understand the loneliness-no one is in your shoes but you.

I’ve often told my friends that after showering and going through the exhausting routine of putting on the compression garment (Greek to them), I’m exhausted before I ever leave the house.

After this many years I still suffer from physical pain and PTSD, but I am so thankful that I now have a place to go among friends that understand.
A wonderfully affirming article. Thank you!

Debbie's picture
We All Get It Here

Rann:

I’m so happy to be a friend of yours who understands! I spent the first 6.5 months from my mammogram to mastectomy without the support of others who understood, so I have a tiny sense of how hard that must have been for you all of those years. You obviously have a lot of strength and resilience, despite the fatigue you must feel.

Thank you for sharing with me and please come by often.

Survival > Existence,

Debbie

Ed Gaile's picture
Thank You

Debbie –

Thank you for sharing these words. My wife is a breast cancer survivor and is experiencing many of same feelings you have described in this post. She follows you on twitter and pointed me to this post. It made her realize she is not alone with these feelings. As a spouse, it is easy to focus on the physical aspects of dealing with this disease. After talking more with her and reading this post it is readily apparent that there is an on-going mental battle that will continue to wage with both good and bad days.

Thank you again for sharing.

-Ed

Debbie's picture
I Am So Very, Very Glad to Have Been of Help

Ed:

Your comment brought tears to my eyes because it reminded me of how my husband and I struggled with this issue. After my mastectomy, my husband was relieved that the “worst was over” and ready to go back to normal. Unfortunately for me, I was just starting to deal with the emotional fall-out of being told, “You have cancer.” (Not to mention the disfiguring surgery, mortality issues, anxiety, etc., etc.) This disconnect between us resulted in horrible loneliness for me and confusion for him.

Being the loving, comitted man that he is, he eventually came to understand the “on-going mental battle” waging inside me.  I am so moved to know that my post helped you come to that same understanding of your wife’s struggle. And, I am also so happy to know that my post helped your wife know that she is not alone in her feelings.

As cancer survivors, we certainly know how hard it is for our loved ones to go through this with us. You are a good husband to be able to go beyond the obvious physical aspects of the disease and stand beside your wife for the entire long haul of her emotional healing.

Thank you so much for your comment and I wish you and your wife all the very best.

Survival > Existence,

Debbie

Angela's picture
Thanks for validating these common emotions

Great post Debbie! So many cancer survivors have and will experience these emotions and it often goes undiscussed. You have a wonderful way of giving a voice for all of us to better understand that these feelings are common and normal. Thank you for sharing your gift.

Debbie's picture
You’re Very Welcome and Thank You!

Angela:

Thank you so much for the wonderful compliment. I’m happy to give a voice to these issues. It was only through talking about it all with my oncology therapist that I managed to heal emotionally from my cancer experience.

Survival > Existence,

Debbie

Karen George's picture
Debbie, what a beautiful blog

Debbie, what a beautiful blog you have here. I thought that I was alone in having anxiety come up when October rolls around with its pink ribbons and walks. Thanks for bringing that, and so much else up. It’s a weird feeling. Being a survivor. I feel as if I’ve been under a microscope for the last year, and now it’s over. But how can it be over? Reading blogs like yours have really helped me through the process. So thank you!!

Debbie's picture
Glad You Found WWGN

Karen:

Thank you and I so agree that survivorship is a weird place to be. We definitely have an expectation of finality when treatment is over, but that’s when we learn that the emotional part is just getting started. The only antidote I’ve found is realizing you aren’t alone. I’m glad my blog was able to help you find that comraderie. Come back anytime!

Survival > Existence,

Debbie

Jayne E Flynn's picture
You are Heaven sent!

The past few days have been hard. I finished all my treatments for Imflammatory Breast Cancer in the end of March. Now I am so confused. I am feeling all of the things you described in your post. Today I was thinking I was gonna search for a blog or look into a survivor group just to see if it is me. I told my partner yesterday, I look great, the cancer is gone, my stamina is not what it was or should be, but how do we determine how it should be? The malaise you described is so descriptive of what I am feeling. I was thinking about the tamoxifen, which I have been on now for a month, and what type effect it must have on your pysche. I had to change my SRI that I was on for a very long time and was working for depression and had to start a new one at the same time as starting the tamoxifen. Holy smokes, I could go on and on…I just want to say thank you and I look forward to reading more!

Debbie's picture
Emotional Healing Takes Time

Jayne:

You’re very welcome. Everyone I’ve spoken to agrees that the transition from cancer patient to post-treatment survivor is very confusing. You would like to be happy, relieved and finished, but it’s just not true. You’ve been through so much and you still have to deal with it. The truth is that emotional healing has its own track, which has nothing to do with physical treatment. You just have to continue to do the best you can, day by day, just like you did during treatment.

I’m so glad you found WWGN and thank you so much for your comment. Please stop by often. If you’d like to receive my posts in your inbox as they come out, be sure to subscribe (see the box under my picture.)

Survival > Existence,

Debbie

nemea's picture

thank you

Another big thank you from me. I am a carer, for my mother, recently diagnosed with fallopian tube cancer stage 1. We caught it early, she just started chemo, outlook is excellent but she is beyond miserable (the first side effects have just hit), and although, like the lady’s husband in an earlier comment, I am focused on the positive (prognosis is excellent), I am seeing my mum express guilt, anger, frustration, shame and more that I simply don’t know how to help with. Stumbling over your blog tonight (keywords were cancer guilt) gave me quite a bit of insight…. suggestions would also be appreciated. How can someone from the outside looking in truly help with this? What are the right words? What can I do so she doesn’t feel her feelings are being waved away, but that also help her to see the silver lining? These are issues nobody tells you about, that doctors and nurses don’t have time for, but carers need to understand and find ways to work with.

Debbie's picture
To Truly Help: Listen and Validate

Nemea:

Your devotion to your mother’s care and psychological well-being is a beautiful testament to your relationship. Because you care so much, that must make watching her go through grueling cancer treatments especially difficult. I feel for both of you.

Here’s what I can tell you: Being diagnosed and plunged into treatment makes a person miserable, regardless of the prognosis. Being told you have cancer is like getting hit by a car you didn’t see coming. It’s epic and transformational and it takes time to process. Your mother’s reactions (guilt, anger, frustration, shame and more) are entirely normal reactions to her situation. And, I’m sorry to say that it is simply impossible to appreciate the silver lining when you’re in the middle of this misery.

That doesn’t mean your mother will feel this way forever. She needs time to work through the initial shock and come to a level of acceptance. I found acceptance by speaking with an oncology therapist who helped me work through my emotions and feel validated. It takes time and each person gets there on her own schedule. It’s a very personal process.

You can help your mother by really listening to her and recognizing her emotions for what they are – the entirely normal expressions of a cancer patient. You can respond to her with empathy and understanding. I wouldn’t force positive thinking and seeing a silver lining, that just makes a patient feel isolated and misunderstood. When you truly hear and validate where your mother is at this moment, you help her begin to heal in her own time.

You can also check out my post, “Do You Share Your Bad Attitude Toward Cancer?” If you’re interested, search too for posts on anger, loneliness, fear, and stress. I talk a lot about working through these feelings during and after my treatment. Reading my posts may help you understand where your mother is coming from and help you to help her.

Tomorrow, I am posting a review of an eBook written by a cancer survivor on getting through chemotherapy. It’s written with warmth and from experience and I found it helpful for both the patient and her caregiver. It might be helpful for both you and your mother to go over it together.

Cancer hurts everyone in the family. As a caregiver, make sure to be good to yourself too. Find support for yourself and your mother wherever you can.  Good luck!

Survival > Existence,

Debbie

nemea's picture
Debbie, heartfelt thanks for

Debbie, heartfelt thanks for your thoughtful reply – it’s the first REAL and MEANINGFUL advice I’ve had since this journey started- thank you, thank you, thank you! I also read your posts on anger and stress earlier today, and they made so much sense. It’s just that I’m painfully aware that I’m on the outside looking in (no, I’m not guilt-tripping, just aware that I’m not in mum’s shoes and can’t pretend to be), so it’s terribly helpful to hear it from someone who’s been there and can tell me what to do. I’ll keep an eye on future posts as I’ve really found so much of your blog to be helpful.

Many thanks again and the best of wishes to you, and everyone living with this, sufferers and carers alike.

PS. Yes, I am taking care of myself, and can’t emphasize strongly enough that carers should NOT consider themselves selfish when asking for downtime – it is crucial to being strong enough for two.

Debbie's picture
You Are Very, Very Welcome!

Nemea:

You’re very welcome! I’m so glad to hear that you’re taking care of yourself too during this very difficult time.

To get my posts sent right to your email box, you can sign up in the box to the right entitled, “Want My Posts Sent to Your Inbox? Sign Up Now!”  Also, if you want to get my monthly newsletter too, go to the home page and sign up at the top of the page.

I’m sure you’re doing an excellent job as your mom’s caregiver, because you care so much and are so willing to search for support and information. All my best to you and your mom.

Support > Existence,

Debbie

Irene's picture

2nd time around

Hi
I had cancer 7 years ago, it has now come back 6 months ago in the other breast and to the liver, all of the same emotions come back, but the worst is the guilt and distress to my family, that I have got cancer again

Debbie's picture
I’m So Sorry Your Cancer is Back

Hello Irene:

I’m so sorry your cancer is back. I can’t know all you are feeling, but I do relate to the guilt of “causing” my family distress. Please keep reaching out to other patients/survivors and professionals who understand. You deserve a lot of support to help you deal with the many emotions of cancer.

Blessings to you.

Debbie

George's picture
We’re all lucky

My wife and I joke about that line from the Rocky Horror Movie. And for me, it’s true. I am lucky. I’m here. They didn’t cut any physical parts off of me. I’ve been,,,, NED for over 3 years now. The doctor corrected me one day when, in my excitement I called it cured. They say 5 years out is the magic number. My ENT doesn’t understand why I would be angry. My wife doesn’t understand why I am not happy that our lives are going well,,, I am happy that we are happy. Yet, just below the surface, there lurks darkness. Waiting for the slightest crack in my armor, to cast its shadow on all the sunny parts of my life that I should be so thankful for. I had no words to explain, nor ideas too express, that could encompass the emotions. Thank you for shining a light down into my darkness. Thank you for giving me an idea as to what my mind has been telling me,,, what I have been living without knowing. You guys rock. I appreciate every one of you. 🙂

Debbie's picture

Sharing with Each Other is the Only Way to Heal

George:

It’s extremely difficult to know you are “lucky” and at the same time feel so devastated. It causes ambivalence, resentment – anger – that is hard for us to understand, let alone someone who hasn’t experienced it. And then, when they can’t understand what we’re feeling, we’re further isolated and even more angry. I’ve found over the years that healing begins when we find other people who “get it” because we start understanding our feelings and realizing we’re not alone.  I’m so glad you found us and I want you to know that we’re here for you and appreciate you too. Thank you for sharing with us. It is sincerely an honor to shine a light onto your pain, as others have done for me throughout the years.

Survival > Existence,

Debbie

Lori's picture
Normal?

March 11, 2014. Double mastectomy, two weeks later lymph node removal, two weeks later removal of left expander due to major infection. I still have three more surgeries, one to include removal of ovaries so I can take cancer medication. During the day I am so strong……everyone tells me how lucky I am that I don’t have to go through chemo, that I get to keep my hair. But no one seems to understand the fear, hurt, anger, that resides inside. Friends don’t want to hear about it anymore because I look so “normal” on the outside. My mother is at the end of her breast cancer journey and unfortunately we are not close, all she wants to talk about is herself and all the alternative stuff she is doing. My husband has been great but I feel so self absorbed and guilty if I put to much on his shoulders because he has major job stress and some personal health issues. But who or where do I go to talk? Thank you for addressing so many of the feelings that I have. I look forward to reading more of your writings!

Debbie's picture
Unfortunately, Yes. Very Normal.

Hello Lori:

You’ve been through so much since March 11th and I totally get what you’re feeling. I was also told I was  “lucky” and struggled with the emotional fall out of diagnosis and treatment.  The bottom line is that no one who goes through cancer gets off easy, regardless of whether we had chemotherapy or not. I didn’t start to heal emotionally until I connected with other patients/survivors at my cancer center. I joined support groups, participated in events (such as Look Good…Feel Better) and talked with a therapist. It took time, but I found people I could talk to who understood and who didn’t make me feel guilty. (I also felt guilty about causing my husband and family worry.)  I’m so glad you’re here at WhereWeGoNow and I encourage you to keep sharing and being heard.

Take good care.

Debbie

Juanda's picture
empty so very empty…

I was diagnosed with breast cancer in October, had surgery in November. My outcome was good but I can not seem to shake this horrible empty feeling. In May of this year, 5 months previous to the breast cancer, my husband of 28 years had an accident that resulted in the removal of his left eye. he can no longer work at the job he has done for 37 years. We are guardians to our 13 year old grandson and have been since he was 4. I feel lost, sad and empty.

Debbie's picture
You’ve Been Through So Much

Hello Juanda: We have a lot in common. I also had a good outcome physically, but struggled with the emotional effects of cancer for some time. Given all you’ve been through in the past year, it’s not surprising you feel so depleted. It takes a lot of time and energy to process traumatic events, especially when they hit one after another, and it takes a lot out of you. For me, it also took talking to people who understood and were supportive. I hope you are in or can meet with a support group or counselor to talk through your feelings. You’ve got a lot on your plate and it really helps to talk with someone who is there just for you. Good luck and please know that what you’re feeling is normal and you are not alone.

Debbie

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