Lost my spark

Jenny532

I had the best case scenario bc...and after a lumpectomy in Nov, 2017, radiation for 4 weeks in Jan. 2018 and tamoxifen...I was released back into the wild. Radiation kicked my ass, I finally started feeling better from that in April...and this weird depression set in. I cry for no reason, I used to have a happy resting face...I now have a bitchy resting face. My husband says I've "lost something". I have this feeling of impending doom, although my surgeon says that of all her patients, she worries about reaccurance with me the least. I can't get back to the happy person I was before my diagnosis. I've lost desire to do anything around the house, go out with friends or family, and panic if I'm not home by 7 pm.

No one seems to really understand...I say I'm struggling, and people think...but your ok! You beat cancer! But that is so not how I feel. I am seeing my a therapist next week. I just thought I'd try to find a place where maybe I could find someone else that is going thru this.

wallan

Hi Jenny:

Hugs to you. Don't beat yourself up over this. Its perfectly normal. When others who have not gone thru the emotional shock and grief of having a breast cancer diagnosis, and then the treatments and then the always in the background wonder if it will come back, they do not understand the toll this takes on us because they have not experienced it themselves. It takes alot of energy out of us. It doesn't matter if your oncologists says your prognosis is better than all her patients. it doesn't matter if you recovered well from treatments. It really screws with your emotions and energy. Many of us have a depression once "treatment" is over and we try to get back to our normal lives. Many feel flabberghasted as to why they feel this way. Most often loved ones and friends do not get it and they expect us to be our normal selves again. As you said, they say or imply you beat cancer, get on with it, get back to normal. It leaves us feeling guilty that we are not back to normal. But realize you have been changed now. Breast cancer does that. For me, it was like my innocence disappeared. I had to face my mortality. I had to face that my body can betray me. I need to readjust to the new me.

I have had BC twice now. Once 14 years ago. Stage 3a. At that time I never thought I would get over the depression after treatment ended. But it did. My attitude changed and I enjoyed life. Then a year ago on the other side, I was diagnosed with stage 1a. This second time around my oncologist told me she wouldn't even treat my cancer if I was older, it is so "non-threatening" compared to her other patients. Her nurse said I wasn't really even a cancer patient, because I didn't need chemo or radiation and my cancer is likely cured. I just needed arimidex. I did have a mastectomy too (I had a mastectomy 14 years ago too) and got reconstruction this time which turned out pretty good. Its all over now. All the surgeries. Just that little pill everyday. And you would think I would feel good about surviving yet again and with a good prognosis. But I am not. I am unmotivated. I feel like i need to reprioritize my life again. I wonder when it will come back. It takes alot of energy out of me. And I realize this is that depression or whatever you want to call it, back again. I have been punched by breast cancer again. It doesn't matter how "mild" it is this time. And, like you, friends and family want me back to "normal" me. But I can't get there. I am changed again. Profoundly changed. And this time, I don't feel guilty that I am not back to my prior self. Others will have to adjust to me. And I found out from last time they do. Or they disappear. Whatever. I am living for me now.

I take really good loving care of myself. I told my doctors how I am feeling and they do treat the depression with antidepressants. And I consciously make the effort to enjoy something just for me every day. I know eventually this depression will pass. Yours will too. But I know I will never be the same. Likely you won't either.

Hugs again

wallan

mustlovepoodles

Sounds like depression to me. Depression and PTSD are VERY common following serious illness. My DH had it following open heart surgery and I had it following breast cancer treatment. Like you, I handled the actual treatment well. It was in the aftermath that I fell apart, like I could finally let down my guard.

I suggest you speak to a licensed therapist, preferably one who works with survivors and grief issues. I'd also consider starting an antidepressant. It made all the difference for me and my husband. Medication regulated my out-of-whack brain chemistry, so I could get on with the business of returning to life. I only needed it for 7 months, but no telling how long it would have taken to right my boat without it.

Jenny532

Wow, Wallan...thank you so much for your response and for sharing your story! I cried as I read it, because finally someone understood what I was feeling and EXPLAINED to me why I was feeling this way! And you are right, I have changed...and it upsets me because I feel I have changed for the worse. I am already on an antidepressant, but I have been on the same one for over a decade...I may have to switch it up. And your comment that friends stay, or go, whatever...lol, so exactly how I feel. So how do you get family to understand what is going on, considering they haven't gone thru it? First and foremost, I'm going to have them read your response! Hugs to you too, thank you so much for replying and trying to make me feel better.

Jenny532

Mustlovepoodles, thank you also for your response! Perhaps letting my guard down is a great way of putting it. I am already on antidepressants, but I might have to look more into different ones. And seeing a therapist next week. I could really get on board with having my brain back in whack!

voraciousreader

jenny....most people don't know that I have been treated for breast cancer, so they have no way of judging my before and after...which is okay by me. I have had so many more obvious medical issues that most friends and family are pretty non plussed by my drama....

Recently, I met a young man who shouldn't be alive, but is. He had a brain aneurysm and now has many physical and cognitive challenges and is so happy to be alive. He told me his friends bitch about the stupidest nonsense. He prefers to enjoy life. He chooses to be happy most days.....and so do I. Rarely do I share my medical issues but this week it was hard to hide them because i am walking with a cane due to hip replacement surgery. My dear new friend marveled at how quickly I am recovering. I told him, THIS is nothing. I have survived much worse. And then I told him about what i survived. And then he said, “You are an alien warrior." Hmmmmmmmmmmm......I like that label. Makes me feel warm and fuzzy and yet speaks to me on a gut level. Only another survivor could say that in a most meaninful way....

My advise....treat yourself gently. You will reach your new normal somewhere, sometime, down the road. I found mine. It is bittersweet and I wouldn't have it any other way.....this alien warrior will follow her own road with her own compass ...no regrets and no apologies....and I promise...so will you.....

And that mirror....spend as little time as you need in front of it...Then you will have more time to do what it is that brings you joy. That's another thing....it took me a long time to feel joy again....that takes work! Hard work!

Soooo....rest a little now....don't beat yourself up. Cry. Cry some more. It is ok. I promise you will wake up one day soon and begin that new normal journey...and if perhaps you lose your way...just remember you found us here and we will always be here to support and guide you.......

wallan

Hi Jenny:

Thanks for your response to me. You helped me by telling me how you feel the same way as I do. You will get your new normal. It takes time. You are not alone. I am so happy you found this website. You will get tons of understanding and validation here because we have been thru it, and we do get it.

As for family who don't get it - I have not been able to get my family to get it. Not the way I want. I just accept that they have not been where I am and I stopped expecting them to get it. They just don't have the capacity for it. If I feel depressed, or unmotivated or tired or just want to be alone, I just tell them, I need to be alone right now. No explanation to them. If I need a hug, I go hug them. If I need a day off work, I take it. I am lucky I guess in that they do respect that. Sometimes my hubby is demanding. He tries though to give me space or cuddles if I want. If I need to talk about my breast cancer experience or fears or whatever, I do not talk with my family because they do not get it and I know they judge and think I should just be grateful I am alive and get over it already. I come to these boards and these ladies, or I visit with other breast cancer survivors in my community. It helps.

So keep coming back here.

Hugs again - and thank you.

wallan

Runrcrb

good advice in the many responses above. I will echo the counselor and reiterate one with grief experience. You are grieving. I saw a counselor when i was first diagnosed and my husband was in cancer treatment. That was OK. The counselor i saw after my treatment was over and my husband had died helped so much more. I felt heard and was educated on many aspects of grief and now have tools that helped emmensely. Not totally out of the woods but know I'm probably more than half way through the forest.

Good luck

Siciliana

Jenny, I can relate wholeheartedly to what you are feeling. For me, it's like a black cloud following me around, obscuring the sunshine. No matter how good things are, I still feel the presence of that awful black cloud, reminding me that it could rain at any time. Energy level is not what it used to be, maybe due to depression, and maybe due to late effects of radiation, or both. I really miss the old me. The carefree me.

Jenny532

Wow. I have never been a part of a blog or anything like this. I stumbled upon this site, and thought I'd try to post something...I didn't think I'd really get replies! I wholeheartedly appreciate everything you all have shared with me. Siciliana...you nailed it on the head. I'm so sorry that you feel that way too. I wonder if the radiation is still there, because I just drag. I too miss the carefree me. I was a riot before...sometimes that comes out, but now less and less.

Voraciousreader...being happy most days was my motto. My therapist used to label me the most optimistic person she ever knew. I'm not that anymore, and I hate that! So I appreciate all your advice...and I will cry! And cry some more, much to my 17 year old daughters chagrin! It's so great to know that I have people who might care about me here. I need to learn how to use this site to also reach out to others like me.

voraciousreader

mustlovepoodles

External beam radiation is short-lived in the body. It does its job and leaves within minutes, so it's extremely unlikely that the radiation you received 6 months ago is currently causing you trouble. However, the leftover anxiety and depression induced by having treatment for a life-threatening condition can be long-lasting, indeed.

Mc16

Thank you everyone for these responses. You have helped me a lot.

I’m seven months from surgery and I am just not getting back to normal. I guess I won’t and I need to realize that is okay.

The bit I really hate is that I feel apart/separate from my family. That is the toughest.

Thank you again

FaithsMama

Jenny,

Definitely sounds like depression. I am so sorry you are going through that. I've been feeling EXACTLY the same way for several years! I've tried many, many things to shake it, including antidepressants. Nothing has worked. The bizarre thing, is that being diagnosed with breast cancer has sort of kick-started me OUT of the depression! I know that sounds really bizarre, and odd and it is. Likely it's a combination of the breast cancer and a new person in my life at about the same time. (I am single). Although this person, isn't a romantic partner, having him around has "lifted my spirits." In addition to the diagnosis, and surgery (msx, snb, te), has forced me to engage in my own life again. I've been depressed, been grieving the loss of a relationship, grieving the loss of  life I thought I've had at this stage in my life (53yrsold) and in the interim between my grief and depression, that's lasted YEARS, since roughly 2010, this new phase of my life, is forcing me to engage in my life again. I don't know what the answer is for you, to get you over the hump and back to living again. But, I do know your experience, is exactly what I've been experiencing, PREcancer. I am new in my cancer journey and I have good moments in the day, and some not so good moments. I'll take that over the darkness I was in for so many years. Your pain is real. I understand it very well. I hope you find a way to living again. Hugs. 

Jackster51

All good words of wisdom above, and to add, Tamoxifen can cause some major depression as well. I hope you feel better soon. It definately is a process, so go easy on yourself.

MinusTwo

So glad you posted Jenny. Great thoughts from everyone.

As for family, mine continued to think I was superwoman and could do everything and nothing had changed. They continued to think that after my recurrence two years after mastectomy. I finally gave up trying to act like everything was wonderful, but then ... they didn't want to talk about 'illness'. So exhausting. The light did not dawn until 2 more years when I fell & broke my arm. No feeling in my feet due to chemo, but that wasn't something they understood. Anyway, somehow that turned on the light bulb. Now they're almost too far the other way - reminding me maybe I'm biting off more than I can chew when I schedule trips or even long walks. Good luck shaking them into the real world. Most important - TAKE CARE OF YOU!!!

mustlovepoodles

Mc16, the truth is, none of us are going "back" to normal. The only way is to put it in low gear and ease forward, toward a new normal. Why low gear? If you've ever gotten your Jeep stuck in a mud hole, you know that if you put it in high gear and step on the gas it just makes a lot of noise, slings mud everywhere, and the Jeep remains stuck. But if you put it in low gear and ease forward, your tires can get a grip, pull you up the slope, and you can be on your way. That's the way I see my recovery. I was pretty deep in the mud hole for awhile, until little by little I was able to get up and get on with my life. My life will never be the same, of course, but its okay. My cancer experience has fundamentally changed me and I wouldn't feel comfortable in my old life now. So I made a new life and I'm content with it.

Best of luck to you. I know it's a struggle when you're in the mud, but you won't be there forever.

MinusTwo

Perfect analogy Poodles. Thanks

Sweet_Pea

Great analogy, MustLovePoodles. I think I'm still in the mud. I've been on the same anti-depressant for years now and will see this Thursday if the psych wants to switch things up at all. Last time I went I was looking forward (to put it one way) to exchange surgery, and had tons of anxiety around that. Now it's over and the anxiety is subdued but I'm stuck in a low, low place I'm afraid.

Jenny, I, too, have a best-case-scenario breast cancer situation. So why don't we feel better? Lots of good answers above.

Hugs to all.

JoyceA

Jenny, you described exactly how I've been feeling. I hate that you are struggling but relieved to know I'm not the only one feeling this way. I am definitely stuck in the mud. I didn't need radiation or chemo. My surgeon told me I'm done with the bc so just go back to living your normal life. I didn't have to worry about looking natural in my shirts or take estrogen blockers. Hopefully we will find and be happy with our new “norm" soon.

This is such a great site and has helped me tremendously. Joyce

DivineMrsM

I came across this thread today and whole heartedly agree with all the advice and insight. I hope I can add to it.

I've been dealing with bc for over seven years and have ups and downs. Poodles, your jeep analogy is right on. I definitely feel I have a lower vibration, dealing with life more thoughtfully and in a more meaningful way.

Jenny, I didn't want bc to change me, but it did, and I learned to embrace the changes. You are smart to figure out quickly that your family isn't going to understand much of what you are feeling. Love them, but find support elsewhere. Life is about change, change is constant. That song about rolling with the changes, well, it is true. And there is one of my coping stategies. When I'm driving by myself, I listen to some great tunes on the radio, turn it way up and sing along as loud as I want. REO Speedwagon, Katy Perry, whatever suits my mood,

You've had a jolt, a big, scary experience which affected your equilibrium, throwing you off balance. One of the best things I did to counteract the jolt was to seek out some positive, intense experiences. For example, we took a trip to Cedar Point amusement park and I road several roller coasters, one being the Millenium Force, which has been rated as one of the best coasters worldwide, and which is way out of my comfort zone. Dh and I also took a trip to Las Vegas, maybe doesn't sound over the top, but we had to fly, which is, again, out of my comfort zone, yet the trip was a great and memorable experience.

Here is another tip: Once a week, do something new you've never done before. It could be as simple as shopping in a new store, trying out a new recipe, taking a local drive through a neighborhood or countryside you've never driven before. You need a steady diet of new things to get your brain thinking in new ways. Once you start doing this, you will get addicted to it, it is a good addiction. Stop doing the same old stuff that bores you.

Along those same lines, start planning an activity you really want to do, whether it is a day trip or overnighter, to someplace new. Not an activity your husband or kids or anyone else wants: what you want. You can certainly take them along. But this gives you something to look forward to, and your mind must make the preparations and it helps shift your focus to new adventures. I have done a Segway tour with my son, and gone to a botanical garden and national park with my husband, all near where I live but had never taken the time to do before. Then after you take this excursion, think about the next thing YOU really want to do. Then start planning it.

I’ve had those times where I wanted to cocoon at home, and needed to nudge myself to do things. When it is something I really want, it is easier to do. I feel like we women are often fulfilling our loved ones wants and needs and lose sight of our own, thinking it is selfish to ask for more for ourselves. Gently guide yourself over that hurdle.

I also encourage you to declutter your house. I don't know what your house even looks like, but go through your clothes and toss or donate what you no longer use. Go through your kitchen cupboards and simplify things somewhat. Clean out the garage. Clean out a desk or closet, This activity really helps clear your head.

A final tip: journal. Write down your thoughts. Get a fifty cent notebook and every day, write down three pages of how you feel, what you think. No one needs to read what you write. But this activity is a great way to vent frustrations, anger, confusion and every other emotion, and it helps organize thoughts and clears the mind so you can move forward with life, one step at a time.

You have a new normal now. That's okay! You don't need to apologize to anyone for that! Best wishes to you.

PreludeSing

sage advice Divine Mrs M...💐. Thank you so much for taking the time to write down your tips....this site is so full of gracious and generous people...it is my secret little universe where I can spend time just being the new post BC me...

MinusTwo

Prelude - yes, I like your description. It is my secret little universe too.

Jenny532

Once again, I would like to thank all of you for your responses...what a wonderful group of ladies! It brings me to tears that so many people took time to respond to me...and that it helped others.

DivineMrsM...thank you for your advice! It is something that I should do, because I have gotten myself into a rut. Just feel safest in my house...I really need to get out more.

DivineMrsM

Jenny, I've definitely had my times of hibernating at home. But if you're at the point of thinking that you lost your spark, it's time search for ways to get it back. And you will! It is a process, tho, and doesn't happen overnight.

The same old things you that used to make you want to go out may no longer speak to you. That happened to me. So I had to dig deeper and figure out what was of interest to me now. I learned that it changes, too! One summer I was all about getting all new makeup, going to Sephora and discussing it at length with the cosmetics personnel, having them put makeup on my face. Then I moved on to visiting botanical gardens. Last summer, I got a pool pass for the first time ever and dh and I loved going to the pool. (Have a pool pass this year too).

And look, I also binge watched some intense shows on Netflix, like Orange is the New Black. So its not all about getting out and about! But I allowed myself the “guilty" pleasure of getting immersed in the show for several hours at a time, and I never indulged myself like that before.

Jojobird

Jenny,

Thank you for posting so honestly about your struggles, and I have drawn so much inspiration from all of the responses here as well. What is so wonderful about this site is knowing you're not alone. Love out to all.

Your experiences with losing your spark really resonate. A cancer diagnosis goes to the core. It goes to the core of who we are, what we're living for, and who we surround ourselves with.

My mother lives overseas and simply does not call me. Even after my recurrence, just a few months ago, which does not bode well and keeps me up at night - not a single call. Nada. My dad is totally uninterested in my daughter (his only grandchild) and calls to talk about the weather. I have given up on even expecting support from them, and this makes me sad, but also reduces my disappointment.

My support systems have become my circle of friends and coworkers, and a bc support group. I've also started writing more, reading more, binge-watching more, and doing outdoors things with my daughter this summer. My husband is a wonderful, goofy man who worries quietly and continues to hold up this fraying fort, but he is such a trooper. I've also started to try new recipes, which is another fun and creative outlet that also helps our family's health.

My point is that family - and even some friends - might fall by the wayside. Someone on another thread wrote that cancer is a magnifying glass on relationships; that feels so true to me. And many others don't get it. They don't get the magnitude, the to-the-bones fear of mortality that cancer brings up, and/or they're too scared to talk about it.

Taking care of yourself and your needs is a priority. It is not selfish. Consider it to be a new job. one which your survival - emotional, physical, intellectual - depends on. Surround yourself with people and things you love. Experiences, foods, books, films --- it's part of the healing process.

I wish you continued support and love, and light back for your spark.

Jojo

Travel302

This is a wonderful site. It makes me realize that there is a new normal and family does not get it. Well, they try but they feel it's "gone". Lets move on but it's never gone.

Walking is difficult since I have CIPN and my legs are weak from becoming so sick and was in the hospital for a week. Still struggling with my leg weakness. What I did for my son and his wife I can no longer do (help out with their 4 kids). My DH and I try to babysit when I can, but with my limitations it's hard. In the last 4 months, I have finally been able to climb stairs but that is still a strugglel. I want to take the whole family to Disney World but my son said not till I am better. Well I thought I was better but apparently not in his eyes. He wants the old Mom but the old Mom could drive, run with the kids pick them up and just go, make dinner for all of them and come over and clean their house and wash clothes. No one ever asked, I did it because I wanted to but those days are gone and I need to take care of myself. Washing clothes is a struggle, driving a car will not happen and running is out just walking is a huge challenge.

Sorry for being long winded. It makes me sad that my old life is gone but it makes me even more sad that my family does not get it. All your words of encouragement have helped and made me realize I am going to be ok and keep on looking ahead and stop looking back. The past is the past and for now (and hopefully for a long time), the future will be brighter. You are all very strong and I plan on feeding off that strength.

Thank for being there for me and I hope someday I can be there for someone else struggling through bc and "losing the spark" too.

blah333

I am so glad that spring is in the air.... that usually gives me an extra spark/more wind in my sails. I am going to try to enjoy it extra this year. This is an old post but still relevant to many people... My own mother had cancer and seems to get annoyed or doesn't understand the big deal when I still struggle or feel bad about it. She has a very "that's life" attitude but it's shitty not to have any sympathy.

santabarbarian

I was mired down in a *different* trauma, something emotionally very painful that happened to me a few years before I was diagnosed... Then, I got BC and I realized that if I truly valued my life, then I owed it to myself to let that other pain go, rather than use up my (perhaps limited) time thinking about it anymore. I got to be done with that fruitless pain. I realized I was letting thoughts an old trauma steal too many hours of my time. Which obviously ought to be spent maximizing doing whatever is fun, relaxing, useful, kind, and joy-bringing. What right did I have to be granted life and a long future if I only wasted it ruminating on a past event?

Once I got cancer, I saw with horror I had wasted *years* hurting freshly over an old thing. I think due to the trauma, I was frozen. I was stuck in a state of shock, disbelief, pain: not able to move *at all*, let alone move on! Like a car crash can freeze your shoulder up, trauma freezes you up emotionally and so you revisit and revisit the trauma itself, trying to process it and move forward. But traumatized thoughts go around and round in a circle, and do not resolve... That is their very nature.

A few sessions with a somatic psychotherapist, or receiving neurofeedback, or doing a few sessions of EMDR can do a lot to shift the frozenness and stuckness of post-trauma thinking, and then your natural recovery can/will happen. For further info look up Peter Levine or Pat Ogden.

Please be gentle to yourself and realize there is nothing permanent wrong with you and there are many non-cognitive therapies that will address what is basically your right brain being stuck in a shock-induced mode.

Natasha007

Wow! Santa, you hit the nail on the head. I think your post will help many of us, cancer or no cancer. I feel blessed to have read these inspiring words. Thank you

Marymc86

I experienced that, too. I am just over one year since diagnosis. My lumpectomy was a year ago March 7th. A little over a month ago, I felt my depression beginning to lift. I feel much more like my old self now. It’s great. I didn’t think it would ever return, but it has. I think it will for you, too. I hope it does very soon.