Establishing Your New Normal: Life After Cancer
Can my life be normal after breast cancer?
This was one of the search terms used to direct a reader to my blog recently. I was really struck by the question, and I want to reach out to whoever it is who is asking it and try to answer it as best I can. I know it is a question many of us have struggled with, so it would be wonderful if you could join me in reaching out to this person and sharing your own thoughts and experiences.
When grappling with a question, my first port of call is always to the dictionary. I find I think clearer if I can define the question first. Here is what I found when I looked up the definition of “normal” in the Oxford English Dictionary.
adjective
conforming to a standard; usual, typical, or expected
noun
the usual, typical, or expected state or condition
A few things came up for me after reading this definition. Firstly, the expectation that our family, friends, work colleagues (and sometimes we ourselves) have that once we are finished with our treatment, we can just pick up where we left off and return to our normal lives.
Secondly, “conforming to a standard” brought to mind images of what the “perfect” cancer patient is expected to conform to.
Interestingly the OED expands the definition of normal to:
-
Phrase
the new normal
chiefly
North American
Cancer patients crave “feeling normal” and try to work the gray areas of living with uncertainty into daily living. It becomes normal—a “new normal”—to live with the stress of cancer survivorship ~ Cancer Advocacy Now
It takes time to find your new normal. Be patient and gentle with yourself, especially in the first few months after treatment ends.
Some survivors feel unexpectedly shy in social settings. I’ve spoken to a handful of women who moved soon after treatment, and they all struggled to break into their new communities. Their stubbly heads took a toll on their confidence, and residual fatigue left them with little energy for mingling. But it was making conversation that proved hardest. Idle chitchat seemed vaguely insincere, but introducing the whole cancer story was even more awkward—inspiring shock, confusion, or deafening silence. It’s no wonder it took several years for these women to feel at home in their new surroundings ~ Stupid Cancer blog
There’s no question that cancer alters your life forever, as does any extraordinary experience, but I do think the first year after treatment are particularly difficult. I just wanted to cocoon. When friends would coax me to get together, I’d often be so fatigued, it was difficult to enjoy being out. Worse, the feeling of having gone through something traumatic made it difficult to relate to their everyday chit-chat. It felt more isolating to be with people. I was also extremely self-conscious and completely impatient for my hair to grow back. At the 2-year mark, I feel pretty much healed from the traumatic aspects and enjoy being with people again, but there’s no question that the experience of cancer shapes us, as any difficult experience will do.
LikeLike
Agreed! That first year in particularly, and maybe a bit longer afterward, is a period of limbo that needs far more support.
LikeLike
Thanks Eileen for sharing your experience which echoes what so many of us have experienced. Your point about the first year being the most difficult is certainly true and for that reason, I would like to see more support given to patients during this time of transition.
LikeLike
I am nearly a year finished chemo(end of march) and herceptin finished last november so im CURED and back to Normal!!!At least thats the general consenses from family and friends and i have to say the hospital.Since finishing treatments which worked very well i feel as though ive been cast off into the wind from the hospital.Now is when i am finding the whole process difficult to deal with as i now have time to think about it.My confidence has taken such a hit,and am not able to deal with any stress or even minor situations.Ive spent the last 15 months living under the ‘this time next year mantra’i will be finished .i will have hair.i will be normal again.Yes this year im finished treatment and have a little hair(not growing nearly fast enough for me!!!)Yes im back to normal but its a new normal that takes a lot of adjusting to.Hopefully this time next year i will have adjusted!!!!
LikeLike
What an important topic! I am looking forward to reading the responses of your readers, as I am a month away from finishing my treatment and wondering what is in store for me then
LikeLike
It’s an excellent question, and of course I have to start with a flippant remark. Not sure I was all that normal before diagnosis and treatment. ;-p
I’m two years post diagnosis and NED, not quite 18 months post treatment – although I’m still on Arimidex and will be for a while. When my treatment ended, I felt frightened – who was going to monitor me? Watch me? Would people be patient enough with me as I became more “normal” again – no longer an active patient. Would I go more than 2 minutes without thinking of breast cancer?
Certainly some activities need adjustment. I am tired. I do have to rest. It’s not as easy to travel, and I can be fuzzy headed. I’ve always been introverted and I hate large groups. Cancer hasn’t changed that. There are PTSD moments, and I find that I have to recognize them. Talk about them. Anxiety too.
One of the problems with breast cancer is that it’s always there in the background. Will it come back? Is this a met? Is this a lasting side effect of chemo/rads? I’ve found that talking about it, being open about it, writing about it makes it seem less frightening, something that’s there. I also do as many creative things as I can – crochet, bead, draw, walk. I think my strategy is relax and distract sometimes. And the less special I make the cancer experience, the more it becomes part of me – I guess that’s a good definition of “normal”.
Maybe rather than normal, what I’m looking for is some way to be more matter of fact about the whole experience. It happened, I can’t go back, I can only go on.
LikeLike
I have always wondered what the term your “new normal” meant. I as m not a breast cancer survivor but have had several biopsies. I a m stage four colon Ca with mets to my liver. Thankfully I am in remission at this time as I watch my brother dying from the same disease. I am disabled from all the many surgeries, years of chemo and radiation. I have always been annoyed by the system labeling cancer as a “journey”. I wish the people who have never first hand experiences this “journey” to genuinely reconsider this word choice. As a child I always associated this word with adventure and excitement. Something you actually wanted to go on. I have lost functionality physically but want to be productive. I cannot return to the work I loved all the while knowing it can return. I want to believe I am cured and will stay in remission as I watch my brother suffer the same fate that would possibly be mine should it return. I know the only direction is forward and in constant pain. My quest is how to live meaningfully and contribute . I volunteer on a cancer board but can basically just care for myself. Any ideas out there? I am looking for repurpose and Ideas. I feel stuck. Thanks to all and God Bless.
A
LikeLike
Hi Marie
An interesting topic, on which I have changed my view many times since my BC diagnosis nearly seven years ago.
During treatment my focus was on getting back to normal, making cancer a temporary blip in my life story and carrying on where I left off. I was lucky and I was physically able to do that (albeit with a few more naps!) But it didn’t feel normal!
I was sitting in meetings at work thinking ‘what am I doing here and why do they think this is important?’
So my life has changed a lot since then….I learnt that volunteering and working to make change for other people with cancer was much more rewarding than sitting in those meetings but it wasn’t easy.
Accepting that the goals you have strived for throughout your life so far are no longer what you want is difficult – especially when faced with the lack of confidence that cancer often brings.
And how do I feel about cancer now that I can say my life is better since my diagnosis? Grateful? Most definitely NOT! I believe that people achieve things after cancer ‘in spite’ of the cancer not ‘because’ of it. An important distinction I think!
Living through cancer gives us the chance to view life a bit differently, to be clichéd about it – don’t sweat the small stuff! (We have enough big stuff to sweat about!) But it can also be frustrating when you can’t transfer that lesson to people that haven’t lived with cancer…..
I can certainly relate to your other commenters (is that a word!!) about symptom anxiety and finding it hard to relate to others ‘chit chat’ – all I can say is that it does get easier over time – bad news or new symptoms still bring panic but not the full on punch in the stomach panic! and as for chit chat, a counsellor once said to me that I was swimming along on top of the pond with all the other little ducks and was suddenly grabbed by my feel and pulled the bottom of the pond where it was dark and dirty and scary – I was popped back up, dishevelled and scared but soon looked like all the other ducks – except I now knew what was down there! I think that’s why we can find it hard to listen to chit chat!
Emma x
LikeLike
I love the duck analogy. Recovering now from my exchange surgery and coming to grips with the fact that I am a changed woman. I have more perspective, but I thought I had appreciated what was important before. Not so sure I needed to go through all of this to bump it up a notch! I do appreciate a normal day with normal stressors, but I also often feel like an outsider in my own life because different things matter now. Chit chat sometimes amuses me, other times irritates me, and sometimes soothes me. Sometimes it’s just hard to have been on a journey that so few can relate to. My support group has been such a balm in that way.
LikeLike
sorry – spellcheck!! I was grabbed by my feet in the last paragraph! not my feel!!!
LikeLike
Having cancer and then seeing other friends deal with it I realize we all have our own way of dealing with the aftermath. Some grow stronger and some wither. There’s no “right way” of going through it.
I used to work as a Cardiac rehab nurse. After heart attacks or by-pass surgery, I would help people figure out how to live better, what to eat, how to deal with stress, how to quit smoking, how to exercise, how to deal with medication side effects. I have seen the words “Cancer Rehab” several times now, and I think it’s a great idea!
The one common factor in all cancer is fear. fear is the most destructive emotion both physically and mentally that you can have. If you can beat the fear, everything else will fall into place.
LikeLike
This is such an important topic! I am still searching for that new normal, coming up on 3 years since diagnosis. I think it’s similar to life after a loved one dies–you must realize that things will never be exactly the same as before, so try not to expect to go back to “normal.” Embracing the new normal is tricky, though, especially when dealing with body image, financial and emotional fallout, survivor’s guilt, anger, fear of recurrence, etc. I suppose what’s been most helpful for me is to remember that because I endured everything cancer threw at me, I had the strength to forge ahead into life post-cancer. Some days are more challenging than others, but it’s doable.
LikeLike
It wasn’t but could have been me asking that question. I have just read your comments and others responses with tears in my eyes. I finished treatment in November 2012 and feel so lost and many comments ring oh so true. I think it has only just hit home what I went through last year. I am a full time mum to my 17 month old son and as much as he is a welcome distraction, stopping me thinking over things by keeping me so busy, I feel maybe i need to reflect on last year to accept what happened and move on. I too had so many ideas on how life would be post treatment but when you finally get to that point it’s tough. The many comments from people at various stages post cancer gives me courage move forward and hopefully find my ‘new normal’ and who I am now. Thank you.
LikeLike
When were going through the treatment we don’t have time or energy to think about the severity of what’s happening. We just soldier on. It wasn’t until 4 weeks after my mastectomy (I had chemo first) that it all hit me. I was a mess for about a month, and now I just have bad days or hours. I think denial of the severity was what people mistook for strength in me!
LikeLike
Oh another great line Flossie about denial – so true!
LikeLike
Wonderful post, Marie! Everyone’s journey is different, but mine had some good things come of it. After I was diagnosed in 2008 poetry started speaking to me again, and I started writing it again after 20 years of silence. Cancer can really make you realize that life is precious and spur you to decide how you want to spend yours. Last year I decided that getting better at my craft means enough to me that I signed up for graduate school to pursue an MFA in poetry writing. I’ve got one semester under my belt and I’m taking a break this semester but trying to keep reading and writing. My biggest time management issue, other than working full time, is I’m still spending too much time on social media!! Not everyone will turn to the arts as part of their new normal, it may be volunteering for something they’re passionate about or committing to quality time with family and friends. It may mean putting the experience behind them and moving on. We just have to trust our internal voice.
LikeLike
It’s a big question isn’t it? I think I didn’t go back to who I was before but things did settle into a new phase but it wasn’t immediately after treatment. It maybe took a year to feel like myself first time -whatever that means but i guess at some level we all recognise it when it happens. More recently I think I am realising since I left my job ( as director of a breast cancer charity) I am starting to get myself back now. That constancy of breast cancer in my life made me feel – I can now see- consumed by it. So maybe we don’t feel like ourselves again until its no longer omnipresent in our lives, our thoughts…our nightmares, our future. I wise doctor said to me after I finished my treatment years ago and my father had just died….there will be better times again. And he was right, and I so value them. Maybe that’s the biggest message to take away. Go well. Xx
LikeLike
Audrey, thank you for leaving us with the message that there will be better times ahead. I find myself struggling in the aftermath of my mother’s death to believe that life will ever be normal again for my family. We are trying to find the new normal for our family without the anchoring presence of my mother. Your words have given me some hope to cling onto.
LikeLike
This is such an important and under-recognised topic. And particularly difficult for us and those around us who find it difficult to understand that we have changed and been changed through our diagnoses. Understandably, our loved ones want our tough times to be over, and for us to “move on”. But it is not as simple as that.
A critical thing for me is that a cancer diagnosis is physically tough and the treatments gruelling and harsh. But that is visible. More challenging in my view, is the psychological shift and long term impact that becomes part of our lives. The vulnerability, uncertainty and fear which has rocked our world cannot be completely banished. And that is just the way it is. It is not being negative, it is being realistic and accepting and dealing with that reality.
I guess I have reached a point of acceptance and taking control in my post diagnosis life. I am not sure that I see it as a new normal, but rather I feel that I live life through a cancer lens. When I heard the “you have cancer” words, something skewed. Not just my vision, but my whole outlook. I continue to move forward, and much of me is the same, but much is just that bit different.
And that is oh so hard to convey.
Thank you, Marie, for such a thought provoking post, and what a lot of comment it has prompted. xox
LikeLike
Phillipa you bring up such an important point about the invisible scars that cancer leaves behind. Often we can wear a mask when facing the world – putting on our “good” cancer face. It is good that we now have this online space where we can take off the masks and share our vulnerabilities together.
LikeLike
Yes, thank you so much for providing this forum. When we’re going through the thick of treatment, we focus on the treatment, the side effects, etc. now we get to look at the rest of our (hopefully long) lives and adjust to that new normal, even if normal is just a setting on a dryer!
LikeLike
Love that line about normal being a setting on a dryer Flossie 🙂
LikeLike
I still have “body image” problems, mainly since my hair never really grew back very well. I am not comfortable in a wig and struggle with the bald spot & very thin hair. I am more insecure than before. I am working on that and have been volunteering at Michelle’s Place in Temecula, CA, where I feel like I can contribute & make a difference in someone’s life who is currently struggling with cancer treatments or on the way to recovery.
LikeLike
Hi Marie, I certainly have thoughts on this one! When formal treatment ended for me (and of course, for our sisters with mets, there is no end to tx – so important to remember what this label means for them), it seemed I had two options: One was to “get back to normal” the other was to get out there and figure out my “new normal.” The first was impossible IMO and the second hasn’t been so easy either.
Finding this elusive “new normal,” requires a tremendous amount of self-acceptance and patience with oneself because this process can be 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.
Redefining ourselves after a cancer dx is an ongoing process. As always, it’s one day at a time. Here’s my post on this exact topic in case anyone would like to read it.
http://nancyspoint.com/life-under-the-new-normal-umbrella/
One final thought, when I read the comments on this post of mine, I realized three of my friends who had commented had died. Another has since been diagnosed with mets. This alone says something about this “new normal” doesn’t it?
LikeLike
Thanks for taking the time to comment Nancy in your usual insightful way and for providing the link to your own blog on this topic. I feel very sobered by your last sentence – the cold sharp shock of the realization that this is the reality of cancer.
LikeLike
I thought after my surgery, chemo and radiation I would start a new job and life would go back to normal when my hair grew back. Between the hot flashes and trying to fit in and keep my disease to myself, I thought things were getting back to what might be a new normal. I had a biopsy scare in the other breast seven months after but all was normal. Eight months after that and another biopsy that was a local recurrence. It was time to have a mastectomy on my radiated breast and surgeries went on and on. The recurrence really let me know my life was not the same at all. That’s when I made big changes as well as had cancer deaths happen to my father and brother and my best friend. If I thought there was a chance for things to return to normal it just wasn’t in the cards for me. My focus is about bringing change with this disease. Now that I see how others lives are forever changed, I think it is a common theme. Great topic Marie!
LikeLike
Hi Susan, it does seem to be a common theme and isn’t it wonderful that we can talk about it openly like this. Before I started blogging, i felt I had no way of getting the answers to the questions that were tormenting me when I finished treatment – questions like will i ever feel normal again and what next! I feel blessed to be part of a community where we can help each other find answers.
LikeLike
This is a very good blog to visit. As a BC survivor I was/am finding it difficult to continue on with a so-called normal life and really needed a survivor network to help me.
LikeLike
This is yet another interesting topic, Marie. I wasn’t sure whether to comment. I felt I would love to join in the conversation – but I needed to give the question time to settle, because I’m not sure I ever had “normal” before cancer, and I feel as though I’ve pretty much gone back to how I was before, which may not be true.
There are physical changes, of course, but I tend not to notice them unless there’s discomfort attached – which, fortunately, is rare. I was lucky enough to only have one cycle of chemo, plus Herceptin, and no radiotherapy, so I avoided a lot of the nastier side-effects.
Psychologically, I think the biggest change is that I have spent the past 5 years trying to figure out how to be more authentically me – how to sing my own song, as it were. It took a re-diagnosis, 2 years ago, to make me realise how important this was to me. Like Jackie, I am embracing my creativity again, and I think I’m close to “finding myself” now.
Would this have come about without cancer? I would hope so – but I’ve been aware, for a long time, that people tend not to make big changes in their lives unless Life throws them a curve ball, such as health issues, a near-fatal accident, or the death of a loved one. Perhaps the problem is that we’re all running on autopilot most of the time, and it takes a major shake-up for us to realise how precious Life is.
I’m not sure whether this actually answers the question posed – but hopefully it’s relevant nonetheless. Thank you for asking, Marie. x
LikeLike
Thank you for taking the time to leave such a thoughtful and measured comment Julia. I appreciate your honesty and while I knew something of your story, I am glad you shared with others how you are becoming more authentically you. May the journey onward be enriching for you and those around you x
LikeLike
For me it certainly is the ‘new normal’. How can it be anything else? After hearing ‘incurable’ in the diagnosis, undergoing 6 rounds of full chemo followed by 2 years of maintenance chemo then just 5 months later having the cancer transform to a faster growing version which resulted in 3 more rounds of full chemo followed by a bone marrow transplant using my own stem cells. Today I live with two stubborn nodes in my lungs and deal with fatigue and energy issues every day.
If I had pushed myself to try to achieve my pre-diagnosis normal I would have put so much stress and pressure on my body and my mind, made myself sick and probably a bit crazy because it simply is impossible. Think of a rock, weathered through time, you can’t just pick it up and put it back to it’s original form. In this case, think of your journey as making a diamond out of rocks. Diamonds are formed deep in the ground in intense heat and pressure. Well, I would say we qualify. I don’t know a survivor who has not felt the intense heat of the diagnosis (what does this mean, what have I done, what about my family, will I die), coupled with the intense pressure of treatment (cutting, poking, prodding, injecting, radiating, hair loss, vomiting etc. etc. – did it work, is it working, what does it mean).
With that thought we need to recognize that we’ve become different versions of our original selves.You can’t go through something like that and not be changed. So embrace it! Embrace your ‘new normal’ – the diamond you have now become. Polish it up and let it shine for all the world to see. I’m a firm believer that out of something bad must come something good. So take the time to examine your own life – who are you, what do you want out of life, what in your life is working for you and what is not, have the courage (you’ve been through worse) to change the things that need changing so that you can live your best life in this next chapter.
Check out my website for more tips and advice about what it means to be a survivor and the importance of living life in the balance. http://www.thehealingjournal.ca
LikeLike
Lynda what a wonderful analogy. Thank you so much for taking the time to share your thoughts – you are very inspiring. Marie
LikeLike
Speaking of life after cancer, please tune into my show on Thursday: A STEAMY, love-filled Valentine’s Day show on TREATMENT SOS? ABSOLUTELY! THURSDAY, Feb. 14th (yes, Valentine’s Day) at 2:00 p.m. EST on http://www.W4CS.com and http://www.W4WN.com. The topic is love and dating after cancer! I have often wondered what that pick-up line would sound like. How long would you wait to tell your love interest? After first base? Right away? No, I’m not kidding; there are enough difficulties in the world of dating–being a cancer survivor can add a dimension that some might find challenging. But, not Charlie Nox. This show could have many survivors looking at dating after cancer in a whole new perspective. Charlie says: “Learn how cancer is your access to getting dates, having sex, finding love, and being more fulfilled in your dating life than ever before!” And, since it is Valentine’s Day, Charlie will be joined by her boyfriend, Jonah, so we can hear both sides of the story. FEDE, SPERANZA, AMORE / FAITH, HOPE, LOVE!!!! (If you miss Thursday’s show, please listen on Saturday at 5-6:00 p.m. EST on both W4WN and W4CS.) FREE, no downloads or special Apps required to listen.
LikeLike
I am still finding my new normal as a metavivor who finished my weekly treatments last Thursday. My fingers are quite numb and I find it hard to type. My body is always cold. My nose runs quite a bit. These are the things I have noticed that may become my new normal. But I can live with those things. They are minor compared to the intense chest and back pain and shortness of breath I experienced before treatment. Thanks for the discussion. xx Jan
LikeLike
And thank you Jan for sharing your perspective as a metavivor. It is so important that we include the breadth of experiences that makes up the cancer journey for all of us. Our love to you xxxx
LikeLike
Thank you Marie for sharing this story, My last chemo is tomorrow, I will continue on with the Herceptin, but I have been emotional this week and its the what next ?..I feel like my protection of chemo is now ending and I’m on my own, every one thinks that’s it back to normal but I look at myself and and I feel anything but normal.
LikeLike
Reblogged this on The Sarcastic Boob and commented:
I have been mulling thoughts of this “new normal.” It’s a phrase I don’t particularly like, but the challenges Marie lays down in her blog cannot be denied. It is worthy of a dedicated read.
LikeLike
To be crass, “new normal” sucks. Nothing about the new is normal. What made normal so normal was that you experienced it for a long time and you could expect it to be the way it always had been. Life is none of that after breast cancer. Normal used to be, single girl looking for love, hoping for marriage and desiring kids. New normal is, single girl still looking for love, unsure of her body, her attractiveness, her ability to be loved and desired, the feeling of unlikeliness to get married and the ruin of fertility. Nothing is normal about that new. The constant worry about recurrence frustrates me. And tolerating other people’s expectation that I should be the same as before annoys me.
And for all of that, part of the new normal is also accepting that I am a bad chick who survived a horrible disease. The duality of feeling happy that I made it through and worrying that “made it” might be temporary makes the new decidedly non-normal. Just as I move to a place where I don’t worry about breast cancer every day, something always snatches me right back to that place and I have to crawl out of that hole again. This up-and-down emotional mess… is my new normal. I am slowly learning how to navigate it, what triggers it and how to work my way through it.
My only advice to anyone is simply… give yourself room to grieve. Try not to feel pressured to be super-human afterwards and honestly, try hard not to worry too much. Vague advice but it is how I am navigating the new life that I have.
LikeLike
It’s funny, I just wrote about this at FCT. After diagnosis and during treatment it became impossible to write creativity. Sure, I blogged, which is really stream of conscious, but I felt broken in terms of storytelling and novel writing. It took considerable effort to create a new normal after that experience. One thing that marked my progression was my return to creative writing. When I finally allowed myself to imagine & invent outside of cancer, it was a reconnection to a joy I’d greatly missed. ~Catherine
LikeLike
Reblogged this on Riding the BC Roller Coaster and commented:
Thanks again to Scorchy @ Journeying Beyond Breast Cancer for reblogging this so I saw it!
Oh my yes, yes, and so much yes!
Some of my favorite parts:
– …less willing to be tolerant of what we may have put up with before cancer.
– …changes in the way you eat…
– …reappraise . . . our family relationships and friendships.
LikeLike
Pingback: Taxol – Six Down, Six to Go « Dglassme's Blog
Like others above, I feel like I’ve just been reflecting on this topic (from one particular angle) – having felt inspired to do so by being one year post-active treatment this week. My post reflects on the notion that cancer survivors – and others who survive life threatening, traumatic experiences – will establish not just a new, but a BETTER normal…a normal in which their bad habits are expunged and their priorities magically clarified, as they’ve been reminded so sharply of the fragility of life. Like so many others, I found the first post-treatment year a very difficult phase – and I think this was compounded by the sense that I was (as I say in the post) failing Life Threatening Experiences 101. I’ve realised that I need to be far more patient and realistic. I’ve also realised that some of my established patterns will be very hard to break – and that more thought is required to figure out whether I WANT them broken. For example, the best remedy for my very intense post-treatment anxiety that I have yet found has been starting a very stressful (and interesting) new job. Suddenly my brain is so full of work stress that I hardly have time to think about cancer and all my scary aches and twinges. But I’m back living on caffeine again, hoping that stress DOESN’T ’cause’ cancer, and wondering whether this is really the solution I was meant to find. A bit too close to my ‘old normal’, perhaps?? Ah well, I’ve resolved to give myself time to figure it out, as it looks like the lightning bolt isn’t coming!! Great discussion, Marie – sorry to ramble but it’s morning here and I’ve got to get kids out door and self off to work………
LikeLike
You are welcome to ramble here anytime Liz! I really resonate with what you are saying and it’s another interesting perspective you are sharing about how easy it is to slip back into our old habits again.
LikeLike
Great post Marie!! And probably just as impressive all the commentary around it. Learning from your piece was impactful let alone all the reinforcements the others provide in their comments.
LikeLike
Hi Diane, thanks so much for letting me know that you found this helpful. I am also very impressed with everyone’s wonderful comments!
LikeLike
This is a great topic and it has been enlightening to read what others are thinking and the different places ye are all coming from. I really enjoyed reading all the comments and realising that there are so many people in the same boat. Getting back to normal has been a statement said to me from so many people. sometimes i just want to scream at them and ask “what do you think is normal. Because i dont know what it is, maybe you would like to tell me” But I just smile at them, rant a bit when I get home and then go for a walk!! they want to hear a happy story and so do we but life isnt like that. Do we want to go back to our old ways that led us to the situation we are in now? We are advised to be stress free, dont eat this and eat this cause it mops up all the toxins, relax more….. and on and on it goes. Do we actually want to go back to our preavious normal? our familly thinks that life is back to the way it was and that we think the same way about everything. But our thoughts or most of the thoughts and how we view the world and our lives are different now. This is our new normal, but not the normal they tought we sould have went back to. Things that annoyed us before are trival now. How we do things is different now. I personnally have removed so many negative people and things from my life and it has been a relief, a huge relief. This is something I thought i would never do.Ok life is different, but we can look at the world in a different way. But will there ever come a time when we reach this new normal? Is it learning to deal with our after effects of the drugs never mind the diagnosis and what has happen. Are we too hard on ourselves, wanting our before life that we thought was normal? nobody knows what is around the corner so as lynda wrote embrace the new normal. It will not be an easy road some days, minutes or even seconds but we have survied so far.
LikeLike
Mona, thanks so much for your great comment – you have done a fantastic job of summing up a lot of what the issues are surrounding this topic.
LikeLike
I think for many people, normal means predictable and even, a certain old cadence to life. It is hard because those early years out, it is fluid, the cadence is bumpy and jarrring…sometimes I think normal isnt defined by old routines and life before, but just having a life where you arent afraid. I guess that is the good news AND the bad news, you will never get over being afraid. But you will become less afraid with time. And suddenly, one day you will be going through the day and say, “Oh yeah, I had cancer.” I wouldn’t trade the absence of normal those first years for anything though, the fear motivated me to do more, see more, be more.
LikeLike
Lauren, what a wonderful comment – I am sure it will have inspired many readers – thank you x
LikeLike
This is such an important topic, Marie and all of the responses are so thought provoking. I’d like to add another element and hope it will not be met with any disdain. There are some of us who were spared chemo and/or radiation and may have only had surgery — ranging from lumpectomy to bilateral with or without reconstruction. While most people would see that as good fortune, it’s a very double-edged sword.
Ten years ago, there’s no doubt we would have received full treatment. While we can be grateful for the medical advances that enabled us to avoid certain protocols, we live with nagging doubts. We know that stage doesn’t come with a guarantee against metastasis for anyone, and our fears are just as real — if not more pronounced, not having the added peace of mind and cellular protection that treatments provide. The nagging “what ifs” … ‘were our doctors right?’ can be paralyzing. Should we have gotten a second opinion post-surgery? And some (including myself) were unable to tolerate Tamoxifen (it aggravated my uterine fibroids) but being very borderline, in terms of oncologist recommendations, were taken off of it.
Of course, none of that compares to losing one’s hair and all the other side effects — and I’m certainly not suggesting that I’ve suffered any more or less than anyone else. This isn’t a contest. However, without the physical manifestations, it was easy for friends, family, and even doctors and other patients to sometimes be dismissive and insensitive of our “changed selves” simply because it was not physically visible to them. That was extremely difficult and it took me a long time to feel validated, until I eventually met other survivors down the road.
In a certain way, I guess I’m saying the grass isn’t always greener and the natural fears of recurrence are compounded by wondering if there was any more we could have done.
The most important thing is that we are all supportive and accepting of one another. There are no blueprints and our experiences are each unique. Fear is fear and treatment (or the lack thereof) sadly doesn’t mitigate that.
LikeLike
This is an excellent point @blondeambition and I am really pleased you took the time to leave this comment. It is so important to me that we get to cover the wide range of experiences that make up the cancer experience and your comment is a great addition to the conversation. Thank you!
LikeLike
dear marie,
i feel a bit shy about commenting on this subject. so much of what i have been through has already been so thoughtfully and insightfuly expressed – the process of coming to terms with the experience of having had a cancer diagnosis, emerging from all the treatment and it’s ravages, descending into grieving for so many losses, trying, trying to LIVE while taking some tentative steps forward, then falling farther backwards as new realities leave us blinking in anger and fear – and more knocked down with grief.
you and many of your readers know that my story is one of both my husband and me having cancer. hugh was first – diagnosed with multiple myeloma, an incurable cancer of the blood, in 2009. then just as we saw progress towards his achieving remission after 2 stem cell transplants, i was diagnosed with ST IV metastatic breast cancer in december of 2011. i am now in NED, and hugh in CR, complete response from the 2 SCT’s. i write about this dual cancer history only as a backdrop for how we have learned (and are still learning!) about how to move on with our lives, both as a couple, as well as individuals.
it’s complicated – always. it’s a challenge – every single day. it’s a confusion of mixed feelings, bewilderment, sadness, fear, and surrealness at times. it’s a process, a work in progress, often more WORK than progress. but in retrospect, there has been progress that has shored us up and helped us keep up on our hind legs, albeit, sometimes very wobbly – especially when we are reminded that we both have “incurable cancer”.
though i realize that we are somewhat, though sadly, not unheard of, an anomaly, there are some aspects of our story that reflect the familiarity of the struggles to live the best we are able after diagnosis and treatment. i think the early days of grieving that centered on the life we had before cancer, the individuality of both of us, as well as our life together, that was altered forever was more heartwrenching than we could ever have imagined. i was a hospice nurse for 30 years, so was very well aware of the term, “new normal”. just not aware of it’s implications for US. it prickled and niggled and bothered and repelled us. we had a torturous and complicated emotional and mental tussle to figure out why that was.
the best conclusion we came to was that “new normal” seemed to constantly oblige us to revisit the loss of our former lives, life, and the pain that accompanied it. it felt like a sentence – imposed upon us. those two words – new. normal. – they made us wince. they made us feel weighed down. they just didn’t fit. they didn’t fit us, so ready to move forward, even though we knew with every fiber of our being that cancer would follow us to the rest of our days.
then one day the words, “life re-invented” literally popped into my head. that was it! instead of yanking us back to the “before” of cancer, life re-invented opened up a whole new way of thinking – one that referenced CHOICES and POSSIBILITIES, that gave emphasis to our undying gratitude for still being alive and to pay homage to all the gifts life presents – even if we BOTH HAVE CANCER. it helped us get outside of ourselves, to find ways to pay it forward, to have the chops to make plans for the future while still facing realities that often still root us in the rigors of medically maintaining ourselves.
make no mistake in believing that our living life-reinvented is the ultimate panacea. it’s not. the ultimate panacea would be NO MORE CANCER. EVER. FOR ANYONE IN THE WHOLE WORLD. and though we are a couple, we are distinct individuals, who like everyone else have lives and mind and hearts and souls that continue to evolve – sometimes in positive directions, sometimes not so much. we get stuck in places we don’t want to be. there is still lonliness and isolation for both of us -i know hugh hurts for me, as i do for him. we employ active protectivness for one another often. but we are married 46 years – so we often can nearly read one another’s minds. things we aren’t ready to put into words.
we aren’t really inclined to offer advice but hope that by sharing this aspect of our story maybe others will have some ideas about how to have some respite from the seemingly never ending saga of cancer, and be able to create a balm that assuages the pain of grief. and please know that we in no way disparage the use of new normal. how each of us chooses to cope is truly a personal matter for each individual. thanks for listening. and thank you, marie for giving us this forum and the invitation to join this majorly relevant conversation.
much love, XOXO,
karen sutherland (TC)
LikeLike
Karen,thank you so much for sharing such a deeply personal and moving story – I am so grateful to you for your honesty. All our love to you and your husband on this Valentine’s Day – Marie x
LikeLike
{{{HUGS}}} To “Life re-invented”
LikeLike
Marie, I have been immersed in this topic in my head since the fall, after my last surgery. Once treatment and surgeries end, the terror really begins. I had been warned. But my-oh-my what a whammy! It’s like what happens to the earth after a quake: everything shifts and then you realize the shift is permanent. For me it’s been a mental mind game of snuffing out the fear. The fear can get so big so fast.
I know that heart surgery patients are counseled post-surgery to watch for depression — and it makes me wonder why cancer patients are not routinely asked about their mental well-being!
Thanks for this great discussion, Marie!
LikeLike
Renn, that is a great point about heart sugery patients and I believe there are also rehabilitation programs in place too – why isn’t this a standard for cancer patients?!
LikeLike
I am forwarding this discussion on to our local oncology unit…this why is a question that needs to be asked?
LikeLike
Pingback: Weekly Round-Up « Journeying Beyond Breast Cancer
Pingback: A Perfectly Unnatural State « The Sarcastic Boob
I am taking my four month remission medical tests and so far all good!! 🙂 This will mark my first year on remission!!!! This first year have been harder than I expected, didn’t want to go out to meet people, for some reason I felt (or feel still) more “safe” staying with family. It’s been a month since I started to accept invitations from other friends not patients, people has been really kind and I’ve received love gestures from them. Now I am fixing my professional resume and missing three years, for me it was my battle against cancer but don’t know how to write it on my papers. I am starting to think that one should print it, it shows courage and the warrior we are. Isn’t that something good in a job candidate? Right? heheh and I’ve always been a freelancer anyway. 😉
Thanks for what you’re doing, is always a big learning to read your blog. 🙂 Hugs from Mexico.
LikeLike
Hi Vilma, I will write something about what to put on your resume after you have been absent from work for some time. I will post it soon so watch out for it. Warmest Wishes, Marie x
LikeLike
Thanks Marie. That will be of great help!! I’ll be waiting for it 🙂 Gracias!
LikeLike
Reblogged this on Pink & Apple and commented:
I came across this post today, while pondering life after radiotherapy, and found the comments made by the readers fascinating. I don’ t know what to expect in two weeks’ time when my 30th and last radio treatment is over, but have a sense that I’d best be gentle as I transition into the next phase and follow my feet…
LikeLike
I found the “after” to be tougher than “treatment” for my cancer. I think when you are going thru everything, you are busy and focused. Afterwards you start to wonder if you will ever feel like you again! It took me a few years, and some focus, but I have finally gotten back to “almost me”…..I found that watching what I eat, giving up my diet coke (tough when I was drinking 15 cans a day!), and exercising….even when I didn’t want to has made a world of difference to me.
LikeLike
Jeanne, that is all very good advice. it does take some time to get back to yourself again – and taking steps to manage your health proactively goes a long way to making this transtition effective. Glad to hear you are almost back to normal and wishing you all the best for your future.
LikeLike
Wow ladies. I have been surfing the Internet trying to find something to kill the fear of what if.
I am a nearly seven years survivor but still have the elephant in the corner reminding me that it could return. Part of this is losing a dear friend last month, who survived 14 years and never thought it would return. Every day is precious and special. Faith gets you through each day, family is precious and to be enjoyed. I never thought I would make it through the first year and here I am. Thank you for such an amazing blog.
LikeLike
Donna, wonderful to hear from you. Thank you for taking the time to leave your comment and share your perspective on survivorship.
LikeLike
Hi Ladies,
I have just found this site and read over the comments and stories and I am sooo happy to read that we all feel the same.
The day this story started was in February when I was told I have breast cancer.. surgery set for March. Well I am now done the 8 rounds of chemo …herceptin still goin … 2nd surgery done and waiting to start radiation. And the BIG QUESTION … what is normal ??
I dont remeber what that felt like. And does it even matter ? Our lives have changed 🙂 and we will all take something from it. I love that it has taught me not to sweat the small … I now know that means LOL. It will be what it is.
As women I feel that we always put the husband/partner …children …family first above ourselves and this made me look at me and take care of me and let me do things that makes me feel good 🙂 I think it is important to do things for us ladies 🙂
I wish you all the best in your journey ..xoxo Becky
LikeLike
Pingback: Cancer Survivorship: An Overview | Journeying Beyond Breast Cancer
Pingback: Fragile – The Franco-American Flophouse