How has your BC experience changed you
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Hating the "journey" word too, I've been on this trip twice now and it certainly isn't a journey I planned either time.
So how has it changed me? The first time in my 30's ( 25 yrs ago) TN bc left me sterile , my husband and I were trying to get pregnant when I was diagnosed. Thus was way before the days of egg freezing etc so in my case that was all she wrote child wise.
I was given a poor prognosis back then so that wasn't exactly a stellar recommendation for anyone trying to adopt. Who's going to give a kid to someone who might not be alive in a couple of years? As a result we are childless so that was one big permanent change.
I had a mastectomy with no recon as I figured why bother? See above paragraph. I am small anyway so actually it was never a priority for me and I was done with surgery. Also back in 1990 there were none of the techniques they have now. I didn't have enough meat on me for them to take stuff from somewhere else and stick it on my chest. And implants back then were still silicone, so no thanks.
I also had to keep my "journey" secret during treatment as my husband and I work together as screenwriters and back then Hollywood was not as "cool" about people having cancer as they are now. We were afraid we'd lose our job because of my illness, so I finished treatment angry and crazy with ptsd.
Gradually Iwith support from my husband , my mo and a wonderful cancer survivor shrink he sent me to I got past that, and got on with life.
Ok, second time last year I felt my body had betrayed me again right in the middle of my career, marriage and all the things we are doing. At least this time I'm not getting the "poor prognosis" stuff but I'm too cynical and superstitious to rely on that. I'm just hoping for the best while I realize that shit happens and no one is immune or safe. Some people have it easier than Indid, some have it harder. I sure as hell not special or alone. I had another MX and again no recon and that is one thing I'm very happy with, the flat look suits me just fine. This time around chemo came with a cold cap, my husband was my capper and he did a super job, of course now he thinks he owns my hair
I've bounced back this time as at least I've had practice dealing with this stuff, and also there are sites like this where we can connect with each other. Back in 90 you were on your own. So glad that's changed. But seriously, the idea of this being some sort of pink paved "journey" just chaps my ass. There's got to be a better term but it's hard to come up with something that fits. But in my opinion "journey" doesn't
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hmm it's interesting to read all the different responses. It shows a world of pain hope heartache and determination. I think what came to me was I was a person who got 'bullied ' by stronger personalities now I live life on MY terms . If I don't want to do something or don't like what people are saying I speak up. I also spent a lot of money on clothes household items and makeup most of the time to impress others and be accepted. Now I have aligned my priorities to suit my family and myself and I have spent 7 years travelling the world. I still dream love and learn I have got very fit eat better and love my body scars and all
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My experience has only convinced me that I'm as odd as I have long suspected. Besides the minor annoyances of lymphedema prevention and other related physical changes, I haven't changed at all. Not one bit. I have no anxiety, no anger, no fear of recurrence, no changes in how I live my life every day. My friends and family say it's because I'm a strong person, but I don't know if that's accurate. I'm really just a logical person and I see no reason to dwell on anything outside of my control. There are many millions of people living with physical or emotional difficulties, I'm not special. This isn't to say I haven't had my moments of self-pity. Of course I have, and I may have many more, depending on how things go in the future. I just feel it and then let it go, because it's pointless.
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Thanks for your honesty, I cannot bear another comment about how my positive attitude will get me through, etc. It is rubbish that breast cancer is positive in any way, it is horrible. My feeling toward it does not change it in any way, my getting through it is simply luck not my battle. My children depend on science and luck to have me in their life not faith and hope. I was feeling as healthy as I had ever been when I was diagnosed this year at 42yo and this disease has given me nothing positive and robbed me of so much, I am glad finally to see a place where people are being honest and not wrapping themselves in pink ribbons. We are intelligent healthy women, who are dealing with a disease that needs a cure not understanding. The disease is cruel, the treatments are cruel and pretending otherwise is just crazy.
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'journey' is associated with a voluntary act. BC is anything but, it's something to endure. It's a TRIAL and I resent and despise being on its stage.
I had to completely stop my normal life of 20 years and physically relocate to undergo treatment. My normal job of being at the helm of a seagoing vessel and repairing marine engines is on hold. Instead, I'm only able to score part time jobs ashore- and these jobs are CONSTANTLY interrupted by doctors appointments and chemo treatments.
I still live on my vessel and she's docked, unmoving, for months, an abnormal thing. I resent being unable to live what has been normal for me. Being at sea was my joy. But I love my ship, our work, and look forward to the end of my treatment and surgery so I can get back out there ASAP. And I see that happening.
Philosophically, this bullshit bodily defect/illness has absolutely altered my attitude for the better. But I still cuss at times and get impatient with myself (but not others). I hold those in the medical profession in high regard and am extremely grateful.
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I was diagnosed in March.
I am still trying to wrap my head around the devastation of this diagnosis. My doctor wants to do this and that to "cure" my cancer, but I feel that I must accept that this is a terminal disease. I am 46 years old. I have three beautiful children, my youngest being 12. I remarried three years ago to a man that I can't imagine living without. Life was so good, and now... I have this "disease" looming over my head like a dark cloud. Everything about chemo and what it will do to my body completely frightens me. Sometimes, I just want to say the hell with treatment and live life as best as I can. But then other times I want the treatment so I can spend more time with my family. I am trying to be positive, especially for my kids. I'm trying to have faith. But some days, I fail miserably.
I read what I can get my hands on, and honestly, many times I feel very overwhelmed by all the information. I read one day that blueberries are awesome for you and your immune system, then the next day I read that blueberries are NOT good for cancer patients. All the info is confusing and conflicting.
I think about that 5 yr statistic. But what happens then? How many more years will I have? Must I live in fear of this crap coming back and having to go through all of this again?
I've made changes. I'm eating healthier. Less carbs and sugar. I quit smoking cold turkey and I rarely have alcohol. I have always hated to exercise, but I'm going to try to start walking because everything I read says it will help me through this.
I pray more. I listen to soothing music more. I hold my kids a little longer when they hug me. And I'm trying to do more things I enjoy.
In a nutshell, so far... this illness really bites.
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seachain recently posted a link to an article which I think many of you will enjoy reading:
Everything doesn't happen for a reason
https://community.breastcancer.org/forum/102/topics/843876?page=1#idx_1
My link will take you to seechain's thread where you can follow her link in her original post. I think this article is a must read for anyone who is less than delighted with having cancer.
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"I cannot bear another comment about how my positive attitude will get me through, etc." Same here!
My dh also has cancer, terminal and aggressive cancer, so now people tell me how I can keep him alive by making sure he maintains a positive attitude. Makes me want to scream.
A good friend totally got this, and commented that since cancer is a systemic, parasitic disease, being all perky would presumably just make the cancer all perky too
I have gotten to the point of being quite aggressive about setting people straight about this. There is no real evidence to suggest that being all jolly will somehow vanquish cancer.
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it's been almost 3 years since i was dx....
i think gradually i am going back to the person i was....sweat about the small stuff.
but i learned that health comes first before anything else and though sweat about the small stuff, i let it go much faster as well.
i just feel sometimes no matter what, things change. nothing remains constant.
the most unpleasant or the most brutal experience was to face death, or the path of how to get to death. it sounds very painful and long and intolerable. though i've changed my life style but i still like to drink red wine. i felt bad but i also like to sip it....finding a balance is an art.
i want to live my life...not just alive. i think that's the struggle i face daily.
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BC has taken my innocence, my hope of a family, my sense of imortality, my looks, and my self confidence. It has made me hard. It has trimmed the fat from my life. I am no pink wrapped saint. I am a warrior who won her sword on the journey. By journey, I mean the journey my reletives took when murdered by the Nazis in Buchenwald. By journey, I mean the journey of war refugees to a strange and possibly dangerous new place. There is no safety at the end of this journey. I am not some joyful fighter. I am exausted and terrified and full of black cold rage against this disease. My best days are when the berserker takes over and I do fight. My worst days are when humanity and care reassert themselves. During treatment this rage drove me to do every treatment possible, no matter what the cost to my body. If you cant win, take the monster down with you was my motto. Thats my experience so far.
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was diagnosed two months ago
Felt my mortality, made me humble and appreciative. Made me cry a lot of course. Made me realize i have a saint for a husband. I learned that I can be a soldier for myself
A lot of soul searching I have been doing. I am looking to find a way to live the rest of my life doing things i want to do.
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it was such a surprise, coming 3 years after the surprise of that's not pneumonia, that's congestive heart failure and your almost dead, that now I am looking over my shoulder a lot more for whats coming at me now. turned my into a regular hypochondriac.
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What a good topic!
Other than the life is short/be a good mom/don't sweat the small stuff- my biggest change has been getting rid of stuff I really didn't need.
On the physical side- I had always been heavy and everything I felt was pretty or feminine about myself: Gone.
I had hip length hair that I was so proud of and wouldn't cut. Gone.
I really loved my boobs. Gone.
I was already separated and stayed "married" on paper since I was on his insurance through treatment- but I had so much reassurance that I had made the right decision during treatment. Bad relationship that didn't help me be my best self: Gone.
I had lived in the same house for 15 years and it was so cluttered and hard to keep up with. Gone. I moved across the country and moved by plane. No more clutter, clean house. I only brought what I loved. What peace.
I've also gained a lot of things:
-ability to be afraid and say that I'm afraid
-ability to let others help with grace in ways I can never repay (this one is still hard hard hard)
-relationship that I didn't run from with the man who cut my hair when it was falling out and is truly The One for Me (cancer didn't give me this- but not breaking it off so he could find someone that wasn't such a mess was a pretty big deal for me)
-ability to say no to things that are too much (still working on this one)
-true friends and knowing who those friends are and how they feel. Also being able to recognize those who care but just can't deal with someone who is sick.
-a new sense of purpose to being healthy and kind. I don't exercise as much as I should but I sure can take the stairs now every time. I'm also vegan now.
In ways, my cancer experience confirmed a lot that I already knew and although some people hate the "journey" saying- I feel like it has certainly been one for me. I hate that anyone has to go through this.
Edited now that I've read other responses: thank you so much for sharing- I've really enjoyed reading. While I'm mostly focused on the good things as I can be- I'm still terrified, pretty sure I have PTSD- just went through 5 months of abnormal tests that I finally got an ok biopsy for 2 weeks ago, have permanent neuropathy, and all pink ribbons can go straight to hell because I can't bear seeing them. I haven't even told anyone at the job I've worked for over a year either- I'm hoping I can put this behind me and just be ok. I can't see me strapping on a survivor sash and doing a parade while people clapped for me but totally understand people who identify with this and need to. We muddle through this in different ways, don't we.
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I am still trying to find the balance between still feeling extremely normal, going about my day to day, and trying not to break into tears whenever the reminder that I have breast cancer comes to me.
Trying not to be fearful and work through my decisions systematically and logically and at the same time being irrationally scared to the point I cannot do anything else every time I feel a pain here or an ache there is now my constant state.
But I am really grateful for this community. Although I definitely wish that none of us are here. Every time I feel overwhelmed, I will come here and feel better. Less lonely. Although i don't post much, I hope that whoever reads this will feel better like I do whenever I am here.
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My BC diagnosis and surgeries have changed me so much and not entirely for the better. It has been 10 years since diagnosis/treatment and it bothers me more each year. Every time I look in the mirror I see the implants and scars.
I realize I am incredibly lucky because I am still here. I have a loving family and husband but they too notice the changes in me.
I hate dealing with the insurance companies, and radiologists.
I have not had a CT scan in several years and only my GYN does breast exams.
Recently my GYN ordered a CT but a radiologist insisted I have a mammogram first, I explained I have 2 implants and I am very thin, so no extra tissue.
The insurance company also denied to pay for a CT because of dense breast tissue. Does nobody listen?
My oncologist practically kicked me out the door at 5 years.
I miss my breasts, I realize now they were beautiful although I always thought they were to big for me and I felt ashamed of them and covered them up. I was way to self conscious. I miss the beauty of real breasts. The way they look in clothes, bras that fit, and just in general.
My husband is very good and loving and says the implants don't bother him.
I also think having a total hysterectomy at 48 years old changed me. I hate being post menopausal. It made me feel "old" way before my time.
Sorry to ramble, thanks for listening.
Lisa
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We warmly welcome you all here, and understand how difficult the "new normal" is to accept. LAKM1109, why did your onc almost kick you out at 5 years? If you aren't satisfied with your follow up have you considered another opinion?
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Like everyone BC has totally changed my life ..I'm not scared all day every day like I was in the beginning ..but I'm very aware of my diagnosis..thinking of it a few times every day ...and all I need is a routine scan to be on the horizon , or an ache or pain somewhere and I'm back to being a nervous wreck !
If I'm talking about something we might do in a couple of years I find myself adding " if I'm still here " to the conversation ..I hate that ...ugh..
On a brighter note ..we retired earlier because of it ..I was 55 and Hubby 56 ..and we have enjoyed our time together ..seeing the grand kids , working in the garden etc ..Because of early retirement we are more careful with money than we used to be ..and tend to pack a picnic lunch if we go somewhere ..or invite friends to our home for meals rather than meeting them at restaurants...it's just as much fun doing that , and saves a fortune ..
I wish this BC never , ever happened to any of us ..but I guess I am learning to live with it , and the fear that pops up with it ..now when I'm having a mammogram and am a nervous wreck for a week before it , I try and realise that any other healthy person going for a routine mammogram has a chance that cancer will be found too ..I mean , that's what happened to me after all ..so I try and put in it perspective ..it doesn't always work but I am trying .
The one ( and only. !) up side of this stinking disease are all the wonderful people I have met on this site ..I have no idea how I would of coped without you all .
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I appreciate the people in my life way more than ever before. Every moment feels like a miracle and a piece of art. I am more calm and have more patience before getting angry about dumb things. I'm way more accepting of others even when they are different from me. I'm much more intentional in raising my teens in their spiritual walk and I allow God to guide me more. I knew I wasn't going to live forevever but now it's became real to me
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I don't take anything for granted.
Diane
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I wanted to believe with all of my heart that nothing in my life would change after BC surgery and radiation treatment. I'm one of those stubborn females that insists no one or no thing will control me. I think truthfully I was in denial about the whole ordeal. Nothing was gonna take me down. I did the surgery just fine. Barely thought about it. Only a lumpectomy gratefully. But I'm not sure I was prepared for the radiation after effects. I expected to be winded and not have as much energy, but did not think I would actually feel weak. But I ignored these feelings and insisted on going to work. I travel a lot for my job. Heavy suitcases, lifting lugging getting through airports. I insisted I could continue. However my body was telling me otherwise. I was a week past my final treatment when I tried lifting my heavy suitcase and take it down the steps. All of a sudden I didn't have the strength. I persisted and my suitcase and I landed tan the bottom of the steps. Now I have a broken foot and a sprained ankle. Did I mention a badly bruised knee? It's a a year later and I am feeling different. I feel like I am not me. No energy and lost my job from a employer who saw damaged goods and kindly let me go. I just can't seem to get my energy back. I have a new job and am trying to pretend everything is great. Go do forbid anyone should know what I've been through.
I just want to know will I ever be the same? It's been 13 months. I was told a year. Sigh. If I had the choice again I would choose NO radiation.
Someone please tell me I will feel normal again.
C2bus
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How has BC changed me? Let me count the ways. I was diagnosed 2 months before my 50th birthday. I had a single mastectomy on July 1, 2015 and 3 weeks later I started training for my first marathon. During my training I had 4 chemo treatments. I ran that marathon to prove to myself that I could do anything I put my mind to. BC gave me that! I got through that year with my chin up and an inner strength surfaced that I never knew existed. 3 days after my marathon I started my radiation treatments. I didn't want to be the "sick person". I was determined not to be. I worked full time throughout this time and only missed one day for chemo.
But BC took away my "light hearted" feeling in life. I am sad and disappointed at times. I hate to even say this but I can't shake that feeling that cancer is lurking and could strike again at any moment. It is an unsettling feeling that I live with daily.
I try to focus on the positive. I do everything possible to live a healthy lifestyle - I exercise, I'm a vegan, don't drink, keep weight in check. I keep telling myself that no one has a guaranteed life - cancer or no cancer. I just take it one day at a time. My husband said to me (during one of my anxiety attacks before a routine screening) -"You are cancer free until someone tells you otherwise". I try to focus on that.
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It is good for the soul to read the words of others and know that I am not alone in my thoughts and feelings, although there is a solitude attached to the entire experience, even as it affects everyone around me. To me that aloneness is most keenly felt every time a needle breaks the skin and slides into my body and I know that what's happening to me is happening to me alone, in my flesh, in my blood, in the skin I'm in.
People ask me how I am and I say I'm fine. I don't have the energy to explain to everyone that I am not fine, am not my former self, will never be that same former self ever again. That everything is viewed now through the lens of breast cancer. It colours my perception and presence in this life. Even as my actions return to normal, the routine of my days, I do not feel normal in them. I feel foreign. Not me. Separate. Separate from all the people who have never been told they have a life threatening illness. I miss that safe, wrapped hammock where I believed I was safe and immune to the vagaries of life. I used to be one of those people. I never will be again.
If I had to choose one word I'd say haunted. I feel haunted. As if some sad, forlorn spirit has attached itself to me, follows me, lurks behind the bookcases in the library, shadows me through the grocery store, hovers over my pillow as I try to sleep at night. Not evil. Not violent. Just so, so sad, so alone, so bewildered by it all. So scared and lost. I am haunted by a keenly mourning spirit, and I feel that pain.
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runor - very powerfully written.
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bc has caused lots of animosity in me, and this is something that is so out of character for me. I'm moody, anxious, and overall, just totally dislike me. Its crazy. I used to be ok with my life. Now i just sit around looking like and feeling like an alien. No one understands until they're placed in our position... which I pray they never are. I try to make the best of everyday. But it's nighttime when I'm knocked down. I surely hope that this attitude will change.
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runor, what a powerful narrative you have written! You do have a way with words. What you wrote resonates so much with how I feel as well. I am never going to have that carefree feeling that I had for most of my life that....life is good... basically nothing is all that serious...until I was hit with this curse not once, but twice. It was truly as if I had been thrown down five flights of stairs, to bring myself back up emotionally each time has been the hardest thing I have ever had to do.
Nobody understands this feeling of being haunted as you put it, unless they themselves have encountered this dreaded illness. Everyone says oh everything is good now, all behind you, keep up a positive attitude! If only they knew of the days that every ache or pain brings such fear and horror to my daily existence. Yes, this nightmare has changed me in so many ways, and yet, I know so many of us travel this path everyday....it has humbled me in ways that I cannot describe
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It's certainly changed my outlook on tit for tat with relationships and friendships etc. Family feuds are something I no longer have time for and I would say my BC diagnosis has made me calmer in how I react to how some may treat me. It's made me see that these petty disputes we have with either family, friends or even online are so insignificant and not important. Just put it right and move it. Say sorry even if you aren't to blame. Stop picking fault with every little thing someone may do or say. That's what I am trying at least anyway. It's also made my Faith in God more real and helped me to make my Faith more my own. And's its helped me to not be so naive into thinking there are certain people that get cancer and certain people that don't. I don't tick hardly any boxes as it were for BC and yet I have it.
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Runor, your honesty and sincerity is warming and yet I feel sad for you too. Not in a bad way, I just wish and hope that one day you won't feel such way. I don't know you from Adam obviously, but your experience has obviously scared you in more ways than one. I hope someday soon you can feel less haunted and grasp hold of the new you. xxx
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I sold my house and got rid of a lot of my possessions a few years back. Two weeks after the sale, one of my kids (24) got hit by a car and had a serious head injury. Two months after that I got diagnosed with breast cancer. Life was already hard and none of this seemed like a shock in the acute sense of the word.
However, the net result was that I got rid of just about everything I owned and am traveling light, renting places short term. I cannot seem to settle down again. I do Tai Chi and art and take care of my mother and am there for my 3 kids, but (now in my late 60's) cannot seem to imagine a "home."
This is a complicated convergence of factors: dealing with my daughter's injury,, which interfered with dealing with loss of my house and where to live next , and dealing with health issues of my mother that made self-focus difficult. And even factors like the rental market. But....
It was really only two years after diagnosis when I started to consider breast cancer as one of the factors, because I had sailed right through since my mind was mainly on my daughter's recovery. I really didn't suffer much angst at all, aside from treatment decisions that were difficult. I didn't care at all about the loss of my breasts and go completely flat. Pain didn't last more than a month. The short term experience of treatment really didn't affect me much at all.
However I think longterm effects can be subtle but potent. I do find side effects and the feelings of being prematurely elderly (!) to be somewhat of a reminder. I feel less like a "survivor" than someone who is staving off spread of disease and think in terms of how long I can make it, subconsciously anyway. My kids talk about having kids and in my mind I think "I hope you hurry up!" If I sign a one year lease, I wonder what the next year will bring. So it is kind of on my mind in small ways in the background.
For me, I felt like there was a grace period of a couple of years where I felt safe and now into my 4th year I feel less safe. I don't dwell on it, but it's there. As it is for everyone .
I think it can be good to talk to someone if you think breast cancer is affecting your life. I have talked with a therapist for a few months and am done now, and it has helped me tease out the effects of various life events and how they interact.
Good luck to all.
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Runor, your description of feeling apart from "normal" life so resonates with me, I read it in early hours of 2018. I feel like a stranger in my own lilfe sometimes, set apart from others and while I know I have made many key healthy changes and no longer make myself work in a job I hated etc, I struggle every day, I live in the immediate present a lot more but when I stop and reflect I realise it has affected me a huge amount......I have never felt truly comfortable or self confident since, I avoid travelling, hotels, new places and hate hospital appointments when I cannot disguise my mutilated state.......its the lack of symmetry and lack of a breast that affects me far more than cáncer. Some days I just long for it to all be over.........
I really understand how people end up feeling tired of life as nearly 6 years on I realise just how much emotional effort it takes me to do normal everyday things others take for granted, I hate shopping for clothes now, I cannot relax at the beach and so on, I won´t go on but I miss feeling joy and miss feeling able to do normal things like travel without being fearful of security checks etc....... and yes I do have a counsellor but she has never had anyone who has had to wait as long as me for reconstruction, and believe me I have battled and battled to even get them to admit it is a right ......but I am still waiting, they clearly hope patients will die first so they can save money, I am alive but I lack the all round energy to really live and I feel guity that I seem to be wasting life that others would dearly love to have.....
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Well, for one thing.....OMG...I'm still on this site! I am still searching, hoping, trying to connect to something/anything, recovering? Good grief....how many years will I feel like this? I have not just changed....I think I might have actually...disappeared! Completely!! This is not me! I still do not recognize this woman. Gosh, I'm tired of myself! Sadly, so is everyone else! People keep telling me that I am sad...but that isn't the right descriptor at all! Breast cancer changed my life all right!!! I feel like I am STUCK in a perpetual loop...waiting for something to happen, change back or get worse? I tell my husband that I feel like I am treading water...that's my job 24/7/365....just tread and tread so my head stays above the water! Every once in a while someone steps on my head or sloshes a giant wave across my face...and never an apology...nothing but constant reminders of how fortunate I am to be in the water in the first place! I smile (because they tell me it helps) and thank them for not driving over me with their boats! I THANK THEM? Man! Breast cancer ruined me...I spent a lifetime creating myself BEFORE bc....and I liked me, very much! Now? Seriously? Start all over? Tell me how!!!! Side effects and new conditions (lymphadema, menopause, insomnia, PTSD, numbness and pain, for example) are lifelong and permanent. I want myself back! My absent breasts are the least of my worries. I have lost almost everything! If it weren't for my beautiful hubby and children, I'm not sure where I would be. Breast cancer sucks!
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