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,
Image courtesy of LulaTaHula
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.
Thanks for sharing your story
Thanks for sharing your story. I am a 1 year survivor and understand completely!
Thanks for this wonderful
Thanks for this wonderful post, Debbie
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!
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.
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, 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!!
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!
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, 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.
2nd time around
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
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. 🙂
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!
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.
Thanks for speaking behalf of all of us
My wish is as same as yours.Although I have survived from cancer I can’t get out of that mentality.It haunts me everyday.The truth is I want to live as a normal person but how can I?I engage in different activities to forget what is gone.Meditation is one such thing.Fortunately I was at a state where Cancer Treatments could rescue me but I feel pity for those who do not have the chance to.My advice for them is to stay positive throughout the journey.
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