In this post I’d like to address another one of those labels often thrown around post-cancer treatment when you are “turned loose” and expected to “get back out there.” Following treatment it seems to me you are expected to do one of two things, either get back to normal or get out there and find your new normal. In my opinion, the first option is not even possible and accomplishing the second one isn’t all that easy either.
I’m still trying to figure out this new normal concept.
New normal, what is that anyway? None of us were really all that normal to begin with were we? And now we need to find our new normal??
Nothing about life after a cancer diagnosis is really normal at all.
After cancer your perspective on just about everything changes; for good, or so it seems to me anyway. But then it hasn’t been all that long yet since my diagnosis, so maybe I don’t really know. I am still in the learning stages. Maybe there should be designated stages for this part of cancer too. Then again maybe not, that would just be more labeling wouldn’t it?
What I do know for sure is that cancer brings change and lots of it.
If you’ve had surgery, radiation or chemo, your physical appearance is probably definitely altered. Your physical capabilities, stamina and strength may be temporarily or permanently impaired. Your relationships may have been affected, positively or negatively. Your life style habits may have changed or be in the process of changing. You may have trouble sleeping. Your career path perhaps evolved, changed direction or even ended. For some, fertility is affected and others face early menopause symptoms. Still others must continue adjuvant drug therapy which, of course, brings with it various unpleasant side effects. Sometimes clinical trials are called for and continue on for what seems an endless duration. This list is merely a sampling of some of the changes cancer often brings.
Something that is very much a part of my new normal now is going to way more doctor appointments than I did in my “other life.” The latest addition to this particular realm of my new normal has been adding a physical therapist to my medical team.
This particular medical professional has quickly become one of my favorite team members. I actually sort of look forward to these appointments. I said sort of. My therapist also has had breast cancer and partly because of this, we really hit it off. At my very first appointment with her, I ended up showing her my recent nipple reconstruction results because she was having trouble making a decision about whether to have the procedure done or not. She wondered, she asked and I volunteered.
How’s that for a new normal!
She in turn showed me her chest lymphedema. That pretty much tells you just how well we hit it off. She almost does double duty as a physical therapist/shrink. Trouble is we only get forty-five minutes to an hour, so there isn’t much any time to waste.
Besides needing physical therapy for my “new normal arm” and what sometimes seems like a “gazillion” ongoing doctor appointments, a few other additions to my new normal are: taking Arimidex for five years, or as my husband calls it, my daily mini-chemo dose, being wary of sun/sunburn due to chemo, being diligent about wearing gloves while gardening because of lymphedema risk and wearing a sleeve for the same reason, recognizing a healthy diet/exercise program is now essential to ward of recurrence instead of something I used to try to do merely to look better and learning to ask for help more often because of my arm limitations and other limitations as well. This is just a sampling of the list, but you get the picture.
It’s a picture of change, acceptance and adaptation, all of which are sometimes necessary on a daily basis.
Then there is my new blogging life, a totally new normal for me. A year ago, I never would have dreamed of sharing the stuff I share on my blog and now it feels, well, normal.
Finally, there are the psychological ramifications of a cancer diagnosis which are many, but the BIG one is the now constant and unwelcome “companionship” of Captain Paranoia (great name I’m borrowing from Fiesty Blue Gecko, thank you!) which of course really means learning to live with the ever lurking threat of recurrence.
Besides bringing with it change, another thing I do know for sure about this elusive new normal, is that it requires a tremendous amount of self-acceptance and patience with oneself.
This part can be hard, really really hard. Grieving for lost body parts, lost capabilities, lost relationships and old life styles can be extremely difficult. Truly accepting who you are is never easy and cancer can make doing this even harder.
All this change and upheaval is conveniently placed under the “finding your new normal” umbrella.
I’ll be working on figuring out this new normal concept for quite a while I guess.
One good thing is every day is a fresh start. Every day is another chance to find/figure out/live my new normal. Maybe that’s what life is all about anyway, figuring out your new normal every day.
And you don’t need to have had cancer to do that!
How do you feel about the new normal label or concept?
Have you found your new normal?
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Marie
Yes Nancy,it is one of those other labels that are bandied about in the post treatment landscape and you are right – it’s a funny old label to attach to someone. As you say..what is normal anyway? The dictionary defines it as
“convention, formula, pattern, rule” – well I don’t know many out here in the blogosphere that conform to that definition of normal!
You make some great points here and certainly paint a very true picture of what it is like in the aftermath of a cancer diagnosis and treatment. There is an expectation that when you walk out of hospital on that final day of treatment, your cancer story has ended, but the reality is that in many ways you story is only just beginning.
The apparent randomness of a cancer diagnosis can shake your sense of identity to its very core and afterwards nothing will ever feel certain again. Facing your mortality changes you. My understanding of finding your new normal (though I agree it is a misnomer) is my path to finding a new way to be in the world which integrated my experience of cancer and an awareness of my mortality. It is a journey I am still on….
Nancy
Marie, Thank you for sharing your thoughtful insights. I don’t really think anyone fits the conventional definition of normal, and after a cancer diagnosis no way! You make a good point about cancer’s randomness and how it shakes up your identity and feelings of security. I appreciate your understanding and the way you are seeking your new path to integrate your experience. Journey on, Marie!
AnnaCCChronicles
Rather than “new normal” I prefer “keep on keeping on”. Sometimes it’s a struggle, but for the most part that’s what I try to do, adapting, ducking and weaving when I need to. Nothing about it’s normal though.
Nancy
Anna, Thanks for commenting. Yes, adapting, ducking and weaving – that’s a good way to put it! Very descriptive!
Tina`
Wow, I could completely relate to your blog. I’m not sure we can ever find a new normal because life seems to change on a regular basis. And man, I wish Captain Paranoia would leave me alone for a while.
Nancy
Tina, I am so glad to see you have left a comment. I hope things are settling down for you a little. Many of us are all too aware of the presence of Captain Paranoia I’m afraid. Another thing Feisty Blue Gecko said was, “You gotta try to put him (Capt. Paranoia) in the corner and keep him there.” It was something like that anyway! Isn’t that a great way to look at it? So, I hope he stays there and leaves you alone for a long long while!
Katie
Nancy,
I can’t stand that term, mainly because that term has been overused into a meaningless pulp. But also because I don’t know what normal was before breast cancer. And I certainly don’t want to think that lingering side effects are “normal.”
Katie
Nancy
Katie, Thanks for sharing your opinion. So many of these darn labels are so over used don’t you think? Like I mentioned in my post, most of us have never really been normal anyway, and after cancer, even less so.
Hugs for Strength
What a great post. As a healthcare professional it is important for us to be reminded how difficult it may be to return to a “normal” life. The oncology community knows this is something we need to pay more attention to. Luckily there is more money being spent on developing survivorship programs. As more and more people are living under the “umbrella” of “cancer survivor”, it is important to remember the journey is not over just because the treatment may be over.
Hugs for Strength
Nancy
Hugs for Strength, I am really glad you left a comment about this since as a healthcare professional you have a great opportunity to really educate people throughout treatment and when it ends as well. It’s good the oncology community is finally realizing it needs to pay more attention to this “stage” of cancer. The journey definitely does not end when treatment ends. Thank you for the important work you are doing. It means a lot to so many.
Being Sarah
Nancy, really interesting reflections. No, I don’t think normal exists. I wrote this the day after diagnosis just over four years ago:
“I found out that a number of people refer to breast cancer as a journey. Well, yesterday certainly didn’t feel like that, it felt like a nightmare, but the sort of nightmare that would end eventually and I would emerge blinking and things would be ‘normal’ again. But I don’t think there will be normal again.”
Nancy
Sarah, Thanks for sharing those insights you wrote mere days after your diagnosis. Very powerful words! I’ve never cared much for the journey label either, no surprise there! ha. I’m with you, I don’t think normal is likely for me again either. Maybe time will change that perspective, I don’t know. Guess we’ll wait and see…
debby
No. I haven’t, and you’ve hit on the one topic that really, REALLY pisses me off. I had some symptoms that concerned me, and I was being pooh-poohed by my oncologist. He felt that they ‘probably’ weren’t anything. I told him that I was uncomfortable with ‘probably’. He said to me, “I don’t know why you’re worried. If anything, you were over treated.” Now, as far as I am concerned, I got the same damn treatment as anybody else. And (surprise!) some of those people have gone on and died. So what do I have to be worried about? I had cancer, and I don’t want to do it again. Yet when I am vigilent about changes in my body, I get this airy response of it’s probably hormones, or it’s probably age-related, or it’s probably (fill in the blank). I am tired. I am in pain, I’m trying to live a normal life, and I’m really tired of reading what I should be doing and then, when I do it, feeling small and over dramatic. So my new normal seems to be simply ignore it all…and I’m not comfortable about that.
Nancy
Debby, Thanks for venting a little here, Debby, your frustration is certainly understandable! Your oncologist sounds a bit insensitive to me. I would not be comfortable with hearing my symptoms ‘probably” are nothing either! All I can say is, it’s YOUR body and it was YOUR cancer, so speak up whenever you feel a need to. You have to be your own best advocate and if some think that is being over dramatic, so be it!!
Beth L. Gainer
Hi Nancy,
Great posting! I’m so glad you tackled this topic, which is such a sensitive one for all of us.
I don’t think there really is a “normal,” just maybe an evolution (good, bad, or indifferent). Breast cancer sure opened my eyes and has made me very aware of what are my priorities in life.
Before cancer, I was in a bad marriage and a job I couldn’t stand. I decided that I’d get out of both, which I did. So in that essence, life has been good. However, the psychological and physical effects remain.
I’m haunted. And paranoid. I see my oncologist on Monday. He’s wonderful, but I get scared. This is part of my life, yet it’s so hard to accept.
Nancy
Beth, ‘Evolution,’ I think that is an interesting word choice and way more appropriate. After a cancer diagnosis, we certainly evolve through the various stages, feelings, treatments and fears to name a few. Good luck with your oncology appointment, I have one coming up soon too, another thing that will never feel normal by the way. I’ll be thinking of you. Thanks so much for sharing your thoughts, Beth. They are always insightful and honest.
Garden Lady
Nancy,
What I can say is my life is changed, my life before breast cancer is gone, I will never be the same, that’s just a reality. Sometimes I’m sad because I do miss my old life but I am trying to find that “new normal” and I am not even close to figuring it out yet. Life keeps changing.
Nancy
Garden Lady, Thanks for being such a loyal reader and commenter. I really appreciate it. Yes, the old life is gone isn’t it? That’s just a reality, you are soooo right. Lots of us will be working on figuring out this “new normal” for a long time. Let me know if you get it figured out before me! ha.
Mon
For some reason I hate the word “new normal”. Sure I guess its kinda right but nothings normal, no one is normal really. If anything, having gone through a cancer diagnosis and subsequent treatment I do look at life, and people differently than what I used to. The “new normal” me is probably more cynical, less inclined to care what others think and more intent to live a life I want to live.
Nancy
Mon, Thanks so much for reading and also for adding to this discussion. I know what you mean about looking at life and people differently. I think perhaps I’ve become more cynical too and I definitely worry less about what others think. A lot less. That’s kind of freeing, so I guess at least that part of the ‘new normal’ is good. After cancer, you learn pretty fast not to ‘sweat the small stuff’ don’t you? I hope you’ll keep reading and commenting!
Chez Radford
Nancy this post has certainly given me reason to reflect.
The challenges that I have faced in my lifetime seemed always to have solution. Just when I thought things could not possibly become more difficult, they just did!
Did I sign up for this? I cannot believe I would be that foolish. Fortunately, paranoia is not in my vocabulary, although every thing else is. Most days, life is still good, mainly in part thanks to this amazing group of people that make up the blogging community.
Live life, laugh and love♥
Nancy
Chez, Thanks so much for sharing your thoughts on this topic. You are fortunate that paranoia is not in your vocabulary. I’m glad to hear most days are good and I’m so happy you and I are both part of the blogging community you speak of.
Jan Hasak
Nancy, you really struck a nerve with this one. “New normal” has become such a cliche that we forget the book, “Normal is Just a Setting on your Dryer.” Truly, I don’t know why this phrase caught on the way it did, to cover everything from aging, to recovering from childbirth, to the aftermaths of disease. I like to think that I have adjusted to life. Change is inevitable and the key to our coping is to bend with those changes,but not to the point of breakage.
I completely relate to your relationship with your physical therapist. I have the same connection with my lymphedema therapist; she’s my shrink, my soul sister, someone who really gets the psychological ravages of lymphedema.
Thanks so much for bringing out yet another overused and unsuitable term used to paint us and to make the painter feel good.
Jan XX
Nancy
Jan, Thanks for joining in on this discussion about another over-used cliche. The book you mention sounds like it might be a good one to get my hands on. I think you hit on something here and that is that many of these labels and cliches are for the benefit of the “painter.” (love that terminology!) I think I agree with that. You’re right, change is inevitable, but some of it will never feel normal. Glad to hear you have an amazing lymphedema therapist. Thanks again for your great comments.
Alli
My normal used to be getting up for work every morning fighting for the shower first and grabbing a coffee out the door. This is not normal or even a new normal what I have now. It’s all “ABNORMAL” Not having any breasts on my chest is Abnormal. Having them cut off is Abnormal! Having poison pumped in my veins was Abnormal. Not having a good nights sleep in the past two years is Abnormal. Having Nueropathy in my left hand losing half the feeling in my hand is Abnormal. Having to take a drug that causes such pain in my joints makes walking unbearable I can’t do any gardening because my knees hurt too much I’ll never get up that’s Abnormal.Mood swings I could be happy one minute, crying like a baby the next. That’s Abnormal!. I could go on but you get the point. None of this is New normal all these things we can’t do or are changed are Abnormal. We can gloss it over any which way we want but the fact remains the day we found out our bodies have Cancer it becomes ABNORMAL!! There i s nothing New or remotely resembles Normal!!
Alli xx
Nancy
Alli, I’m so glad you are voicing your opinion on this because you tell it like it is. I appreciate your honesty and the thing is, not everyone wants to hear honesty. And some of these labels definitely tend to gloss over reality. Thank you for sharing.
Kathi
Oh, Nancy…that blasted word ‘normal.’ I wrangled & wrestled with it for so long, and I kept having to lower my expections, that I’ve finally decided to ignore the concept altogether. I’m nearly three years out, no recurrance (Yay!), at least no longer at the bottom of the fatigue ditch, but only just perched outside of it, on the edge, hoping that nothing shoves me into it again. A year and a half out, I wrote this, about feeling more like an archeologist digging through the debris to find my former life, rather than the architect of my current one: http://accidentalamazon.com/blog/2010/02/06/almost-normal/
I feel ‘better’ than I did then, but I know now that there is no normal anymore. There’s just life & whatever good I can make of it. At least I haven’t forgotten how to do that.
Thanks for another great post.
XXOO
Nancy
Kathi, Thank you for sharing your thoughts on ‘normal.’ Perhaps deciding to ignore the concept altogether is pretty wise of you! It must feel better with each passing year on the ‘other side,’ but I totally agree ‘normal’ is gone for good. “There’s just life after and whatever good I can make of it.” That’s a perfect mantra I’d say. Thanks for sharing it.
Philippa (Feisty Blue Gecko)
Marvellous post, Nancy – and I just love the way you describe your solidarity with your Physiotherapist. There are such unexpecteds in all of this – gains as well as the challenges.
I also struggle with this strange new world of new normal, or whatever it is. I still feel a bit afloat and directionless at times.
I’m glad you find the Capt Paranoia concept useful – but I have to confess that I stole/borrowed it from a friend so cannot take the credit. Though I did develop him into a bit of a character, and can visualise him. It helps me put him in his place in a corner and get him off my shoulder!!!
Your post has given me lots of food for thought – no doubt it will come to light in a forthcoming blog post.
Nancy
Philippa, Thank you for your kind words about this post. I appreciate your thoughts very much. You still feel a bit afloat and directionless, that is a marvelous way to put things too! There seems to be an ‘at sea’ tie in your choice of words here which seems quite appropriate as cancer can definitely feel like an overpowering force that swallows one up. We have to keep on kicking to stay afloat, as you say, don’t we? Thanks again for your comments, Philippa.
Dianne Duffy
Cancer is not really a “journey”, it’s a detour. Sometimes it’s a dead-end. After my treatment ended I kept hearing about this “new normal”. I remember thinking, “I hope this isn’t the new normal”, because the medication they were gave me for the lingering pain caused suicidal thoughts. For two years. If that was “normal”, I wanted no part!
I honestly don’t think I can ever get back to anything close to normal. Every day is a struggle, physically, emotionally, spiritually. How does one get back to normal after all this?
Nancy
Dianne, Thank you so much for your comments which vividly remind us how some of the medications one must take do indeed have pretty awful side effects – nothing normal there! Having suicidal thoughts much have been quite frightening, I’m sorry you had to endure that. I understand about your struggles and hope you have found a way “to keep on keepin’ on” as another commenter said.
pinkunderbelly
I’m right there with ya — trying to figure this whole thing out, and blogging about it every step of the way! If someone had told me that (a) I’d have breast cancer at 40 and (b) I’d be telling everyone who will listen every single thing that’s going on medically, I’d have said you’re nuts! Yet here I am. With ya every step of the way.
Nancy
Pinkunderbelly, I’m glad you are right here with me, well actually I’m not, I wish you didn’t have breast cancer. What I am glad about is that you have decided to share about your experience too as we try to figure this whole thing out as you say. Blogging has kept me from actually ‘being nuts’ this past year I think! Thanks for your comments.
Jody Schoger
Nothing stays static, whether it’s old normal/ new normal/ survivor/ or thriver or whatever someone elects to call themselves after treatment has ended.
To call a new phase a “new normal,” says that once upon a time you had a life that you want to return to. But that is impossible. The self that is returning, or more accurately, transforming, isn’t the same physically, mentally or for some of us spirituality.
“New Normal” is just another one of those phrases the fell into the vocabulary and echoed, since it worked for some. All of us need to find our own words, our own definitions for life after treatment.
Thanks for a good discussion,
jody
Nancy
Jody, Thank you for commenting about “new normal.” Like you said returning to the life you once led is impossible. I have always thought “transforming” to be a word that fits the cancer experience pretty well because cancer certainly is that physically, mentally and even spiritually. I agree, everyone needs to pick and choose words that fit. That’s the whole point really, there is no one-size-fits-all word for any aspect of the cancer experience. Thanks for adding to the discussion, Jody.