How Do I get my life back?
I am 42 years old (diagnosed at 41), I am assuming this question is in here lots of places...but I am really struggling with the following:
1). I started back to work September 1st, but have constant contact with people who have not seen me since my diagnosis last December. I have had everything from rubbing my short hair to the stories of women people know who have not survived breast cancer. I want to scream...If I can get back to work without making everything about my disease why can't you?!?! Followed by lots of curses.
2). I am more emotional/angry/anxious than I have been in months. I cannot sleep as well as I used too & I am pissed at this disease in a way that I am not sure how to control.
3). I have a great job opportunity that came up, and I am being seriously considered. It would likely mean I have to move away from my cancer clinic. I am scared if I get & take the job, I will leave my providers. If I get it & do not take it, I am letting fear guide my choices and not living my life like I promised myself I would do.
4). My husband and I have done really well together throughout all of this cancer nonsense. We are good friends, and the main support for each other...but treatments, finances, stress, boredom, and him getting laid off have created this strain between us that is hard to bridge. We have both cried and apologized so much in the last couple of months. I can hear myself be nasty to him, but I cannot stop myself from doing it.
5). I feel like the support I did have during my cancer has moved on. Now that I am done with chemotherapy, they are back to their own lives. I get that. I just struggle because my parents are deceased & my siblings are not in the area.
6). Now that it is October, everywhere I look someone wants to sell me something pink. In the past I have always donated, but this year I want to scream. I already gave my breasts, hair, financial security and 10 months of my life to breast cancer what more do I have to give?
I checked into support groups in the area, of which there are none. I am checking into therapists. I am just not sure what else to do to get over this hump. What have other people tried?
Comments
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Effexor worked for me. Not trying to be glib. It got me through a very rough time.
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Hugs to you Smurfy!
As Lisa said above, I too am on Effexor (150 mg/day) to quell the SEs from Tamoxifen and - hopefully - stabilize my moods a bit. I recently added Xanax however (.25 mg twice a day), because my skin was "crawling" at work and I wasn't able to stay asleep at night. I went back to exercising regularly after surgery in January this year, which also helps me feel more in control, and gives me endorphins to combat the blues.
I wanted to chime in with you to let you know you (we) are not alone and that many, many women experience this following treatment. Have you checked with your clinic to see if they have an oncology counselor on staff? I am able to see one twice a month for no charge. It's helping too, but I am starting to wonder whether this "phase" we're in now is just another dark part of the bc trip; diagnosis was the send off, treatment required us to put our noses down and tough it out, and post-treatment must be the true mental test of the journey. It so sucks. . .the onco counselor said she sees way more patients after their treatment ends, and she said it's akin to having post-traumatic stress disorder.
I feel for you, not having your parents or siblings close by. I have felt more alone after treatment than I ever did during treatment however. And I have family close by. Again, maybe this is the point on the bc path where we feel most alone, no matter who's standing with us.
Regarding the new job opportunity: have you checked into the new location to see what hospitals or treatment centers would be close by? I would encourage you to try to find a way to take on the new job, if you would have otherwise jumped at it but for the bc nonsense. Depending on where you live, hopefully you can find good, accessible providers. I too don't want to make decisions out of fear, especially not after all this... but, there may be other considerations for you and now may not be the most ideal time to make the switch. Only you can know that - in your gut.
Keep open lines of communication with hubby. Sounds like you two are good at that already. Acknowledge the stress and agree not to inflict serious damage on the relationship, recognizing that it may take some bad hits in the days/months ahead. Apologize quickly and often. It's hard being the one with the bc - I find that I have no mental or emotional energy to tend to anyone else's needs at the moment. . .and I have a husband and a 7 year old - two close people with needs. . .other women here have even more "dependents"! We have to be gentle with ourselves during this phase. . .really gentle. It will pass.
So SASmurf, my opinion is that we won't get our lives back - not right now anyway. We are still in the midst of the bc crisis, even though immediate treatment has ended and others may not understand. We will slowly get a new life though, and that's what I'm looking toward while I am still in the tunnel. (((hugs)))
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Smurfy-Such great advice already!! I'm almost 41, dx at 40 and just finished chemo/rads over the summer. I'm experiencing some of the same feelings and thoughts that you are. I don't know how to get back to normal now!I think you should go for the job. I understand not wanting to start over with new doc's, but maybe it wouldn't be so bad. Maybe going to a new job would help with all the stuff you are experiencing at work currently because of the BC.
On the husband thing...I can so relate to what you wrote. There is a huge strain on everyone in the family, but how does the spouse hold up under it all? I dont know! There are times I feel a distance too, and other times when I feel like we've never been closer. Marriage can be tough under "normal" times, put cancer in the mix its worse.
Finances-bleh! We've taken a huge blow and it has been extremely stressful. All I can say is that take it a day at a time. Work with your mortgage company if you need to.
Lastly, I get the support thing. The support I got in the beginning was overwhelming and I was grateful for so many things that people did. But, it did slow down and now it's almost nil. I'm lonely at times, but I'm also pushing myself to be more involved with activities and people again.
Idk, I hope I said something to help. I can hear your emotion in your post and wish you the best ((Hugs))
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Thank you all for your responses. It helps to have your perspective and advice.I did get a script for Zoloft from my doctor, so I am hoping that will help for me to stabilize my anxiety about the world. She is pretty sure the anxiety is what is keeping me from sleeping, and I have to agree. I hope this helps.
My husband & I talked a bit last night, and decided a week of hunting/fishing/deck building with his family might help us take a little break and breathe. We both need to be kinder to each other and relax. I hope some time in the outdoors will help him, as he needs a break too. Maybe I will even get some fresh caught walleye out of the deal.
I did a phone interview for the job, and second phone interview for next week. The next step will be to fly out to interview in person if I/they are still interested. I think your advice was good in that I need to at least pursue it & check into what it could be. Then I can decide yes or no. I am excited for the opportunity & hopeful that I get to make the yay/nay decision and not them. It is nice to be wanted.
Again, thank you all for your candidness about your relationships with your situations. I will try to take some deep breaths & relax as I leave CancerLand and reenter my life. You are all inspiring.
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I had my last treatment in November 2012 and in the past few months I am just now feeling like I am settling into this new me. Effexor also helped me after a few adjustments.
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Smurf - I've been going through similar feelings about everything. I'm a single parent and I own my own business (home maintenance and repair) of which I have not been able to work in since my surgery in May. So, I've taken a financial hit and an emotional one trying to keep our little household going here. I ended up going to a counselor to help me negotiate through this. Typically, about a week after dosing, I would get overwhelming anxiety about trying to get my business started back up, my finances on track and our lives back in order. I don't have the strength and energy I used to have and the neuropathy in my hands and feet is difficult to deal with. I don't have the answers yet but the therapy is helping me keep things from boiling over. I am also trying to parent my 17 year old daughter through this and she has chosen this time to make really poor life decisions.
I don't have the answers - I'm praying they will fall into place when I need them to. You're not alone - that's for certain! Sending good thoughts to you and an ear if you need it!
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Boy can we all so relate to how you feel. It's bad enough we have BC but then to be saddled with all the side effects emotionally, physically and financially, is blatantly unfair but then who said cancer or life in general is fair.
Thing is you are entitled to be ticked off. None of us asked for this but we have it just the same and people who say they understand can't possibly know how this disease has blindsided us and disrupted our lives. Breast cancer doesn't define us but it will be a part of us forever.
I was blessed to have family and friend support and a patient advocate from the Women's Health Center where I was DX. She was a godsend.
My DH is quiet and laid back and dealt with the DX by letting me handle it like I always have. I am the strong vocal one so he suffered in silence. My youngest son was very emotional. Just like me.
I don't take meds to cope because Effexor and I don't work so I try to distract myself with other things.
Totally agree about the pink thing. Ugh. Our support group had a luncheon and released purple balloons just cause. I don't do the Race for the Cure either. Enough already. Put more $ into research and helping the many women who can't afford treatment. We don't need more cheerleaders.
It does get better with time and of course clear mammograms and tests. Hoping and praying we all make it to the time we can relax a bit.
Diane
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I am 2.5 years out, unreconstructed but not by choice, saw a special Onco psych today, told her how i have kept going all this time, how i make myself do normal life, how nothing reaches me anymore, but how exhausted I am etc......her solution? Do more! Its good to do things, I told her she clearly had no idea and it was a stupid suggestion.........I dont think we get our lives back and I don't enjoy the one I have
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Funny, I just came to check the site this morning and this thread was at the top of my favorites. I think I had some sort of anxiety attack a little while ago. I was walking home from dropping dd off at school and I started thinking about how my original PS didn't think my TE was infected when it truly was. I woke up on a Sunday morning and the incision site was opening and I was a wreck. I called my parents over to help me and we called the doc and he insisted I was okay. Well I wasn't.Anyway, that whole deal really has took a toll on my physically and emotionally and I wonder if I will ever get back. It was a year ago this month I was dx'd and I re-live alot of the stuff that happened in my head. I don't think it is healthy, but I'm not sure how to stop it. I pray and it helps for a little while.
This is hard, crappy, stuff.
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I am feeling a little better these last few days. Perhaps it is because I have had some badly needed alone time. I picked up my hubby yesterday from the week with his family, and it is good to have him home. We had a nice dinner on the way back home.
Hikingandhorses - I can only imagine the stress with your work, the inability to do the physical part of your job must be scary...no matter how temporary. I hope things get better with your daughter & she starts making better decisions.
Edwards750- your insight is helpful. I like the purple balloons
Lily55- I am sorry about your experience with the counselor. It sounds like she was not connecting with your experience. I hope that those of us on these boards can provide something that helps more than what you received. Sending hugs your way.
Tangandchris -You hit it right on, this is hard crappy stuff. I hate anxiety. It is so exhausting & damaging to my brain. Hope you are able to keep moving through it. I understand about the look back on the year of treatment causing sort of PTSD feelings. It looks like from your stats you are coming up on a year since dx, I hope that year marker goes ok for you. I am not sure how I will feel about that over Christmas when mine happens.
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Hey all,
Over the past 10 months I've become really good at being a cancer patient. I went through dx, bmx, chemo, and just had reconstruction surgery a few days ago.
Everyone keeps coming up to me and "sharing" my excitement that I am finally "done." The thing is, I don't know how to be done. I've jokingly told people I want to get a job bagging groceries or something with no responsibility for the rest of my life instead of return to my old job. Everyone at work tells me I'm missed and they are looking forward to seeing me but I don't miss them or that place. I do miss the kids though (I'm a math teacher).
There are tons of women at work who had breast cancer, got treatment, and returned to work. Why do I feel special....like I've suffered so much I shouldn't have to "go back to normal?"
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I am sorry to say but the truth is you don´t get your life back, the most you get is a shadow of the life you had before, or one which everyone happily refers to as the "new normal" except of course that is a contradiction in terms, and just one of the linguistic tricks that are used to try and get those of us diagnosed to feel positive or hopeful. We lose sooo much in this process and if you have hangover symptoms from chemo or have to take hormone blocking drugs it can be never ending.......The whole cancer circus STINKS, and no one pays adequate attention to what happens to those of us processed out the other end, many of us feel abandoned and isolated...........
I dont suppose I will be popular for posting this but its the reality for many women I´´m sorry to say.......oh and you get the added bonus of family and friends wanting it all to be over so they don´t listen to how you really feel, and then you have the positivity police and positivity brigade full of how cancer changed their lives for the better......(most of whom are financially comfortable not left unable to work full time anymore).........and the media ignoring the reality of life after breast cancer and the reality of life for those wirth metastatic breast cancer..........no I am not feeling sorry for myself I am just angry at all the additional **** we have to deal with on top of all the basic cancer stuff. If anyone wants to take me on about this be warned I am in a very combative mood!!!
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Lily,
Popular answer or not, I'm grateful you posted it. It actually makes more sense then trying to "get back to normal." It explains why so many of us are willing to make drastic changes in the aftermath of treatments and diagnosis...it's because we begin to accept that we won't get back what we had so maybe it's better nit to chase it.
At this stage I don't know what will happen with my life...but I do feel s little better thinking that it doesn't need to return to "normal." I'm sure you're right that my friends and family will not like that choice, but I feel like it is something I may need to do...allow my life to change.
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glad to hear it helped, the elephant in the room is huge and we are changed, whether we like it or not, and that changes all our relationships.......some people, even partners resist change and cannot be bothered to do their own work or even admit the elephant exists,.sad but true
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I can relate to what you are saying about gong back to work. I work in childcare and some days it can be pretty stressful. I had no choice but to go back to work,to young to retire and not enough money anyway. So here I am doing a job that I don't want to do anymore. I really would like a job with no responsibilities, come in do what I need to do and leave, I've lost my focus. I realize I will never have my old life back and some days it is hard to let it go, this "new normal" is not always what I want, you know what I mean. Take care.
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Lily55 . . . thank you for sharing your thoughts. They are so true for many of us to varying degrees. As one of the "lucky cancer types", as I am so often referred to in the medical establishment, I realize that statistically I'm in a much better place than many with breast cancer. But that doesn't lessen coping with the unseeable side of breast cancer: waiting for the other shoe to drop with recurrence; coping with side effects from hormonal drugs; numerous doctor's appointments; family and friends quickly able to move past it (and maybe that's a good thing) when I cannot; the realization that life will never be the same.
All that said, I reason with myself that there are any number of illnesses/diseases that could have befallen me where the endpoints can be horrible and more or less guaranteed . . . MS, ALS, Alzheimer's, to name a few. I don't say this to minimize anyone's experience but to acknowledge that there are no guarantees in life and that my best chance to live a satisfying life is to find ways to adapt as much as possible. Some days I'm more successful at it than others.
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Lily55,
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wow is all I can say as I have been feeling all these things as I approach my dec. 17 year ago diagnosis...leaving my kindergarten and passion of teaching janusary 2014and going into warrior mode the next 10 months...returned to teaching august...a week after rads was done....no time to think...now it's all hitting me...yes, like PTSD....the change in me is not giving a crap about the petty small stuff that means nothing...not stressing over work like i used to....taking days off if I just need to chill...and sometimes just getting really pissed off at people...
We had to face a reality that most don't have to think about...it's all a crapshoot...so I guess we better just do what we love and be around others who make us laugh and be happy...really hard to do sometimes...God Bless us all....Rosie
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Lily - you hit the nail on the head!!!
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I don't know if I can "get back to normal", or if I even want to. I am back working fulltime, and not loving it (understatement)
My husband will be 65 in March, and I am 10 years younger. I simply cannot contemplate working til 65. I had a phased return, and have been fulltime since February. I wish I didn't work fulltime, and asked to reduce my hours, but my manager refused me. I daresay I could get my doctor to state that I am not fit to work these hours, and while it's true that I feel very tired by the end of each day/week, and don't feel I am getting enough exercise, I'm not sure I can really blame post treatment fatigue, PTSD or anything like that.
I just feel that I don't know what life has in store for me any more (I suppose you can say that nobody does), and I want to spend it doing something more satisfying and enjoyable than running like a hamster on a wheel to pay for a house that's too big now the family are grown and leaving the nest.
I have suggested to my dh that we sell up, move back to the UK to spend time with his mother and my father, both of whom are over 90, then eventually we can decide to retire there or come back to Canada, I don't care. I just feel I don't need *stuff* in my life. Family and happy memories are what are important in the long run.
Wow. Rant over!
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I am also one of the "lucky" ones like manu14 mentioned but I don't know if I will ever be the same either. I think not.
I am incapable of doing my job as I did before and don't want to either. I was very fortunate that my boss suggested I take on a part time load with no out of hours stress that was a big part of life before BC. I was about to resign and am grateful. Less money but thats fine. I just do what I can and go home and I know there are people that don't get it but that's tough. My memory and concentration are not so good, I get tired quickly is spite of regular exercise and I can't stay asleep for more than a few hours even with meds from PCP since starting tamoxifen.
I don't feel scared but I wonder what is going on inside my body after that sneaky ILC when I get aches and pains. DH just takes the words of my onc that my chance of it returning is very low and moves past it, me not so much, at least not yet.
And, yes, the pink thing in October. We went on vacation. There were pink balloons at the resort and people walking for the cure. We even went to test drive a car and there was a huge pink check in the showroom for the cure. Komen was everywhere.
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Lily, I think you are right. We don't get it back, at least not right away. It seems like there is always something more to be done & I am not sure anyone cares anymore about the struggles we face this late in the game. My family & friends are happy I "beat" cancer, and they want to get back to happy times...even if I still feel like I am fighting.
I guess it is more than feeling like it, I am. Thursday I spent almost the whole day at the medical center...surgeon visit, Herceptin infusion, medical oncologist visit, schedule echocardiogram, schedule consult with gyno for a possible ovary removal, pick up compression sleeve. That doesn't feel done at all.
I have a second interview for the new job on the 24th. They are flying me out for it, so I am hopeful. I feel the same as other people have said, I just don't care enough about my current work. I am bored and lack interest or focus. I also am pissed at how my bosses treated me during my treatment. I cannot believe how I used to live and breathe this job...what a mistake. The new job would mean more travel, but less overall stress.
This week to add to my already crap mood, it snowed 16" and it has been really cold. I hate it. It is way to early for this much snow. Yuck.
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Your life will never be the same as before bc. For those with a recent dx or just finishing up tx, it is all still very new and raw. Time is wonderful medicine. As much as I dislike the phrase "new normal" that is exactly what we eventually must find in order to not sink into anger, bitterness and depression. Someone said earlier that we are never guaranteed the kind of life we imagined continuing forever, and that is very true. I was dx'ed stage IV about 6 weeks after my bmx. I am very lucky to have a job I adore and am still able to do it. My family, friends and extended community have been kind and loving. I deal, like so many, with too many doctor visits, port flushes and se's of Femara. I also know that I am only as good as my next scan and worry that every ache and pain signals something ominous. However, as time has passed, these worries have taken a backseat to happiness and enjoying my life as it is, because it will never be as it was. I feel that if I don't make happiness a conscious choice, then bc will have won way before it needs to. Effexor helps too
Caryn
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Removed due to double post
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I believe it's a "new reality", not a new normal.
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Yes, a new reality is a good way to put it, though, eventually, it becomes normal.
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Caryn...you hit the nail on the head!! Be happy...we don't want our cancer to have won!! Rosie
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I guess I'm getting it. It's really hard to be happy when your chasing a life that no longer exists.
I guess I should be wondering when I will be able to move on as opposed to when I'll get my life back.
Time seems like the logical answer. I like the term "new reality." I'm going to start using that.
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radical2squared,
It is not always easy to find that new reality, but it is possible.. It's certainly worth a try!
Caryn
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Oh yes, changing a life that no longer exists...that sums it up been tearing myself apart trying to figure out how to get back to normal, when I just don't care about normal anymore...I don't want heavy responsibilities or a stressful job anymore...thank you for stating the TRUTH for so many of us!
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