Things I don't tell anybody

hapa

Sometimes I wish I hadn't done any treatment. Sure I'd be dying, but at least I'd be intact. I hate having no hair, I hate my mutilated chest, I hate the dimple and extra skin on my armpit. I hate my lopsided implants. I hate that one nipple looks askance and the other looks straight ahead. My husband says it looks good enough, that I shouldn't mess with them any more, but I hate looking at myself in the mirror. I'm supposed to do radiation now too, but I don't know. My husband thinks I should do it. I think if I wind up with an arm the size of a watermelon on top of all this other crap my life will effectively be over. I need to figure out what the risk of death is without the radiation vs. the risk of stage 2 or 3 lymphedema is with the radiation. No offense to anyone who has lymphedema, I'm not implying that your life isn't worth living. Quality of life for me is just very physical. It's not like I'm trying to live to see my kids grow up or anything, I just want to go back to fucking around at the lake and backpacking in the desert on the weekends like I used to. If I can't do that, then I'd rather die from the cancer.

Before I got cancer, I was considering divorcing my husband. Now I'm kind of indifferent about it; I'm not going to divorce him, but I wouldn't be all that upset if he divorced me. I don't think he's the problem. He's young, smart, educated, and very good looking. I think it's me. Even when I was young, I thought I'd never get married. I'm a fairly cold person, and a loner, and I don't get attached very easily. I probably should have stayed single. He's been really supportive through all this cancer stuff, not a hint of dissatisfaction, even though I look terrible and have been completely self absorbed, and I'd feel really guilty if I left him after all of this. I wonder sometimes if he just stays with me out of guilt too. Wouldn't that be funny? No, it would just be sad. I feel like all these crappy decisions would be easier to make if I were single. They would affect nobody else. At least I still have someone to have sex with, I guess. I hope my sex drive doesn't go out the window when I start back on AIs.

I'm supposed to go back to work in two weeks and I have no idea how I'm going to get my head back in the game. I technically worked through chemo, but there were literally weeks at a time where I'd do nothing but google cancer articles on the internet. I did maybe 40% of my normal workload. I'm going to wind up getting fired if I don't get my shit together.

WC3

hapa:

It's understandable you are discontent. Can you have revisions to get your chest to a point that you are happy with?

Amica

Hapa I feel for you, and I can relate. I have an appointment on Friday to discuss a clinical trial for steroetactic radiation therapy to my positive lymph nodes. But I am most worried about the strong treatments affecting my lymphedema. My arm and side are not even very swollen and still it is painful each and every day of the last 20 years, since my initial surgery and treatments. And it has been exacerbated by my core biopsy. It's like there's nothing but awful choices, and more awful choices.

So many people on here are so upbeat and cheerful, and I try not to be the voice of doom and gloom, but I sure don't feel upbeat and cheerful, I feel desolate, frustrated, angry, trapped, and afraid. Maybe it's a matter of time, and gradually I will be able to face all this horrible stuff with greater equanimity but I'm not there yet.

WC3

I'm not upbeat and cheerful. I've tended towards pessimism in recent years because I would rather have pleasant surprises than unpleasant ones.

wallan

I understand Hapa. Hugs to you.

We are altered by this stupid treatment and I don't think most people who have not gone thru it realize that.

I try to be positive though because I feel better then. I think on the days I feel shitty "one day, this too shall pass". It is hard though. I am definitely having a self-pity party today. I feel like crap.

wallan

Tresjoli2

hapa have you considered that you might be depressed? You might need some individual/marriage counseling and an anti depressant while you try to find your new normal? I'm not implying...I hope you dont get mad at me. It's just something to contemplate. It's a lot to deal with on your own. Hugs...

hapa

WC - I see my PS tomorrow. I will talk with her about it then. My lymphadema therapist said not to do anything else to the ALND side, so I will talk with her about revising the other side to match.

Amica - sorry you're having such a tough time. I've been following your trials and tribulations with the Canadian healthcare system. Do you mind if I PM you about your lymphedema? I'm trying to gather information about what it really means to live with lymphedema before I decide on radiation.

Tresjoli - I'm not mad. I'm obviously depressed. I think you'd have to be some sort of sociopath to get through all this without getting depressed about it, especially considering how bad my prognosis is. I asked for a referral to a therapist but it never came. In the meantime, my mood has actually improved. I think if I can get even tits I'll feel a lot better. I never thought I was a vain woman, and I wasn't as long as it wasn't my hair and tits we were talking about. As for my marriage, non-attachment is a lifelong problem which I don't think is resolvable. Luckily I chose a spouse that doesn't require much attention.

Denise-G

hapa - you are super honest and that is commendable. Yes, it would be wise to speak with your MO about depression. But so many of your feelings are just NORMAL for where you are at. I've heard from literally thousands of cancer patients, and myself, my mom, and sister are breast cancer survivors. Between chemo and radiation is one of the absolute worst times emotionally. You have gone through so much, and dammit, there is more to do! It feels like you have already run a marathon, you feel totally mutilated and unattractive, and there is more - more risk, more pain, more to go. You just want to quit and give up.

It was during that time I sought the counsel of a former pastor who was a cancer survivor. In just two phone calls, he helped me immensely because I wasn't crazy, I was where I was supposed to be!

Things got better for me after that realization.

hapa

Thanks Denise. The risk is the hardest part for me. I've spent a lot of my career on risk mitigation. I'm used to doing this using statistics and other analytical techniques, and I just can't get the information or data that I need to do a decent risk/benefit analysis! I feel like I'm just feeling around in the dark here trying to figure out what's best for me. I think my doctors think they have my best interests in mind, but every patient is different so I don't know if whatever assumptions they've made about me are right.

hapa

Before I got cancer, I was a relatively healthy person. Scratch the relatively part, I was an extremely healthy person. I was vegetarian since 16, had been eating vegan, no processed foods, nothing deep fried, and no alcohol for a while. I hated sitting at a desk all day so I got a job where I was on the factory floor working on my feet most of the day. I ran >20 miles a week, literally up and down mountains, getting up at 4:30 during the summer so I could get my miles in before work. People at work would comment all the time about how healthy I was. Getting cancer was a huge hit to my self image. I felt like such a fraud! Here I am, showing up for my morning meeting with wet hair because I just finished running, eating kale and beet salads for lunch every day, talking about how great I felt since I quit eating sugar/alcohol/fried stuff, and all that time I had cancer. How did this happen? I mean, I know that nobody knows and trying to figure it out is futile, but...seriously, how did this happen?

I used to run on this one trail in the mornings, and toward the end of the trail I'd be running down the mountain with the whole city in front of me, lit up by the rising sun. I'd look at all the gleaming buildings and think to myself "everything out there is mine for the taking, I just have to go get it." I felt free, like I was on top of the world, like nothing could stop me, and I could just run forever. Now I just feel fragile, beat up, and angry.

Amica

hapa,

I was like that too before I first got breast cancer. Maybe not quite as dedicated. But I was a vegetarian, a runner,, I lifted weights, did not eat the typical American junk food diet, I looked younger than my age ---yet I still got breast cancer. From what I read lifestyle factors are important, but they cannot prevent someone from getting cancer. All it takes is some genetic mutation within you, a mutation shared by millions, and then an external stimulus, like one day breathing in some carcinogens in the air. And that can set off the firestorm. At least that is my understanding.

Warrior2018

I totally get it hapa. This is too hard sometimes. Hugs to you ❤️

beach2beach

Hapa, I get it also, incl the marriage part. Many times, I just say I'm done and I did not have to go through what you have. I don't mind the indifferent attitude myself. I also Prefer the days when I feel numb, its a welcome break. Facing the whole mortality issue, the not knowing what's next, sucks.

Nisha517

hapa-

Finally a discussion where we can truly say how shitty and depressed we are instead of always feeling upbeat. And I’ve been thinking this from day 1, if doctors claim we are all different, why are the treatments so standardized??? Why are they not individualized for each persons disease and needs??? It angers me that when I ask my doctors what makes them sure I need the standard 6 chemos versus 4 and their response is, that’s just what’s been studied. But what if I don’t fit into that study??? What if someone needs 10 chemos instead of 6??? ( not that I would ever want 10)! But it’s just frustrating that we are all forced into some standard treatment and the doctors don’t look at us as individuals with specific needs.

I’ve also been super depressed. I cry more since chemo started versus before chemo started. I felt completely fine before chemo, and now I feel so sick! I always tell my husband, if God forbid something happens to me, tell everyone chemo is what got me not the cancer. I have my first appointment with a psychologist today. Everyone says you have to think positive during this. What’s positive about losing my hair, feeling like a vegetable for almost 2 weeks after chemo, vomiting constantly, diarrhea, etc. I wouldn’t wish this upon my worse enemy. Now you can see why I’m seeing a psychologist.

Anyways, I didn’t live a very healthy lifestyle before I was diagnosed so I keep telling myself that’s why I got bc. But you definitely lived a very healthy lifestyle and it’s understandable why you’re so angry. But I guess cancer is just a crapshoot. Everyone’s a contestant for it.

Anyways, I don’t want to be a debbie downer, but it’s nice to vent and be able to express our true feelings.

hapa

Amica - don't tell me that!!! You're still healthy, right? I mean, aside from the cancer. I feel you, being stuck in Canada caring for your dad. I quit my job about two years ago to care for mine. My mom was caring for him but frankly she's kind of a bitch so I decided to go out there for a while, knowing he was at the end of life, expecting to spend a few months caring for him. He only lasted three weeks once I got there. Then I spent another month or so with my mom, who is unpleasant on a good day, helping her get things in order because my dad was the one who handled all the bills, home repairs, investments, etc.

beach - the numbness is really the least of my problems. The anxious days are the worst. I feel sorry for my husband, though he insists he's still happily married.

Nisha - you've come to the right place! I feel you on the standardized treatments. Doctors are just guessing. I realized this after my dad passed away. I love my MO and I think he's doing everything he can to save me, but he's just trying what he thinks has the best chance of working, because that's the best he can do. Insurance is also a problem in getting more individualized treatment plans. They only want to pay for treatments that have been proven to work on large, phase 3 trials. Which means they will only approve things that work for the majority of patients. So if you're one of the few who doesn't respond to the treatment, I guess you're out of luck. I think being depressed during chemo is completely normal, even moreso for people having severe side effects. It seems like every day is worse than the one before and your life is being drained away. And the thing is, if it were guaranteed to work, this all wouldn't be so bad! I mean, if we just had to check off these awful treatments and could get back to our normal lives with the cancer behind us it would be all worth it and you'd have something to look forward to. But all this crap only gives us a chance at beating the cancer. We could do all of this and still die. I'm not making you feel any better am i? Good luck with your next round of chemo. And regarding the 6-10% of people whose hair doesn't grow back, that number includes women whose hair came back but they feel like it is not as thick or not the same as before. I know one woman who did TCHP whose hair didn't come back as nice as it was before but I don't know anyone whose hair didn't come back at all.

Runrcrb

Hapa, I'm sorry you're here and experiencing all the crap you are. Would you consider seeing a grief counselor? I saw a counselor during the summer/fall of my diagnosis (which was the same summer of my husband's stem cell transplant) and it was sort of helpful. But, I saw a counselor whose focus is grief this past Feb (husband died in Nov) and found her to be 100X more helpful. With your surgery (mastectomy?), chemo and side effects, you have lost your previous life, your kickass self. You should be able to grieve, not "consider yourself lucky that it's not worse." Like you, I was / am healthy, aside from this cancer crap. I found mine in an earlier stage, my grade is lower and I'm ER+PR+ so my treatment was "less" than yours but still, it's a lot. Regarding radiation, in addition to talking to your MO, talk to a radiation oncologist. Ask the hard questions. Chemo was easy for me; radiation was harder. I did have a bit of lymphedema, more on trunk than the arm, and while I don't think radiation was the sole cause, radiation followed (by 1 week) with a broken elbow didn't help. My hair came back better.

Nisha517

hapa- you are absolutely right, there’s only a CHANCE that all these treatments will work. Otherwise for the rest of our life now we will just be wondering has the cancer returned. I told my family the other day “I am now forever a cancer patient.”And that is what I can’t handle right now. Why am I doing all this when it’s not 100%? My quality of life is so terrible right now and for what? So, don’t feel bad about not making me feel better. I’ve been feeling this way. That’s why I wanted to quit chemo up to the beginning of this week. But of course the doctors don’t recommend it and my family and husband are totally against it so I’ve decided to keep going with it. My 3rd round is tomorrow. I have learned a lot on this site on better SE management so hopefully this time won’t be as bad. But we will see.

This entire ordeal just sucks. There’s absolutely nothing positive about it.

LiveWellToday

Dear Hapa, Thank you for your posting. I felt very positive after my double mastectomy as I felt it was under my control and my terms. I found the cancer and got rid of it. But when it came time to decide on radiation (I was in the grey area with my surgeon saying no and some rad oncs saying yes and others saying no), I fell apart. I spoke to so many people and was swayed by everyone and wanted to be aggressive for my kids but I ultimately regret it (3 weeks out). It is tearing me apart. I can't sleep. My eating is off, throat hurts and swallowing is hard.

I am a decisive person normally with a great job and great life but cancer makes us feel like this is all an illusion. What used to seem like a joy (spending the summer in my lake house) now seems like chore (its so far away and the kids don't have school). But its all in our mind. People tel us--be positive -- change your mind. So easy to say but so hard to do. I am so sick of that kind of advice. I too am depressed. Today I started anti-depressants. I haven't had a good night sleep in 2 months. I have indigestion. This is how we fight cancer?

I suggest you don't get into the data too much. I also a data and research person and spent so much time on using those frameworks rather than consulting my heart and gut. I thought about my family instead of my own quality of life. I regret this. Never again will I make treatment decisions like that. If I am not happy, then how can I care for my kids and keep them happy? Yes data matters but what matters most is what you want to do. Don't talk to others.. as some said.. family will always make us do the most agressive treatment--they want us to do everything we can do live for their own selfish reasons BUT they don't have to go through the treatment.

I am so sorry we are all going through this. I hope there is light at the end of the tunnel for us (oh, and I don't mean the tunnel to the other side).

Love to all. You are the only people who can relate to me.

Nisha517

it’s nice to be part of a forum where people can openly say how depressed this makes them and we can’t be strong or positive all the time, maybe even barely! It’s so easy for other people to tell us that this is just a short part of our life, but for us it seems like this is our entire lifetime!

Nisha517

and hapa, thank you for letting me know about hair and Taxotere. I have been super worried about having permanent hair loss so what you said really helped. Thank you

Vslush

I found during treatment it helped to focus on that particular infusion. I would think "Today is Wed, so I will be okay til Friday. Friday evening thru Sunday I won't be able to taste food, and my body is going to hurt. If I can just take SE meds and get through I will feel better by Monday morning. By Tuesday I was thinking, "Whew! Okay I've got about a week and a half to get things done before next treatment". When I stayed patterned and looked at it in "increments", it wasn't so overwhelming. For me, if I thought about how many more months, or what would next year bring, it was way too hard.

I am now close to a year since end of treatment and surgery. I'm not 100 percent, but pretty darned close (recon on the horizon). I'm no longer nauseous, seriously fatigued or hairless. I am forever changed, however. Some changes suck (slight neuropathy), but a lot of the changes have been surprisingly positive. The most unexpected change is the confidence and vigor I have that I didn't have before. This is the most hainus thing we may ever go through and for me, it taught me just how strong and resilient I can be. I was so unhealthy before...an overweight smoker with a ton of stress. Now there is incentive to keep up with my health, and I learned to put myself first.

I say all of this not to tell anyone to "stay positive", or that you shouldn't be depressed. We are all entitled to our emotions and feel what we feel. What I am trying to impart is that you don't lose hope. Absolutely cry, talk to counselors, check out for a while or whatever you need to do to get through this shitty time. Just please don't lose hope. It really does get better after the storm. It's hard to imagine anything resembling "normal" at this time, but please remember how you're feeling now, both mentally and physically, is not how you will feel forever.

Love to all,

Vickki

ShazzaH

I’m sorry to hear you’re feeling like this. I must admit that whilst I was in the UK getting my chemo I was getting depressed & wanted to just forget about having any further treatments, but I think that was caused more by other factors. I have Inflammatory Breast Cancer, so surgery was not an immediate option for me. My diagnosis came 2 weeks before we were due to emigrate from the UK to Spain. We had no home in the UK because we’d already sold it. But I couldn’t make the move to Spain as planned because I wasn’t yet in the Spanish Healthcare System & I needed immediate access to it. I had to start my 8 cycles of chemo in the UK whilst we “spare room hopped” between family & friends. It took until cycle 5 before I got an appointment with Spanish Oncology - we eventually moved to our home in Spain 4 (months after diagnosis) on 2 July. My mood has shifted totally since we got to Spain, mainly because I have more confidence in them treating me properly. The UK Docs missed the chance to diagnose me in Aug 2017 & it took until March 2018 for them to take me seriously & reach a diagnosis - by this time it was at stage 3c. I am very very angry with the U.K. NHS. I have now completed my chemo in Spain & am due my mastectomy in a couple of weeks - to be followed by radiotherapy & perhaps a reconstruction in 6-12 months. I am very nervous about the op, but I think that’s more to do with the language barrier & being in hospital on my own not being able to communicate well when coming out from anaesthetic, plus the chance my preferences for reconstruction may be misinterpreted. I had massive attacks of guilt whilst having the last cycles of my chemo in Spain because I actually felt quite happy that I was eventually in the Country I wanted to be in, in the home we’d purchased in March (& had stood empty since my diagnosis) & I was getting treatment that would hopefully ensure I lived long enough to enjoy my newly chosen life. I have something to aim for in Spain, but feeling content about things gave me massive anxiety, because I wasn’t supposed to feel that way! But I can relate to how you are feeling because I was so full of anger, fear, resentfulnes, uncertainty etc whilst I remained under the care of the NHS - I don’t think I’d have had the stamina to fight like I do now if I’d stayed there. I still find the comments “you look really well” extremely annoying though - no, I’m not fucking well! I feel like shit & am fed up of telling people that I feel like shit so that they understand why I can’t do things that people who “look well” can normally do! It doesn’t help to be told how well you are looking when you have a life threatening disease (especially an extremely aggressive one that you’ve been repeatedly told is fortunately not metastised, but could do at any time!)... Please don’t give up. You will get there in the end I’m sure. And do seriously think about accepting help to get over this period - antidepressants can work wonders at times to give you enough time to think more rationally. 

Amica

I feel so dismal and lost. My cat is sick and I think I have to put her to sleep. She is the only thing I have to hold on to. I can't stand my oncologist or cancer center and where I live it is socialized medicine and you are not given choices; you are not able to change cancer centers unless you move. I live with my 94-year-old father, and while I am grateful to have him, it is not a cheerful daily existence. I just can't stand any of this, and feel such a sense of fear and daily despair. There is no psychosocial support at my cancer center,, an 8 month wait just to see a local social worker, and many month wait to see a psychiatrist. I am so lost.

Peregrinelady

I am sorry that you are in this situation. Is there a Canadian cancer society simlilar to the American Cancer Society where you can call and ask for support? Or some other group that supports cancer survivors?

Amica

Peregrinelady - thanks for replying. Yes there's a Canadian Cancer Society. In my area all they offer is a phone contact, that they can possibly link you up with another woman who has breast cancer to talk to on the phone. I live in a small town, there is supposedly a BC group that meets for lunch once a month. I don't think anyone would want to be a phone friend with someone who is in such despair. I don't know about the lunch, it doesn't sound like what I'm looking for. Sorry to be so negative. There is an 8 month wait to see a social worker where I live but I can see a social worker in another town for a total of 8 visits--all mental health services here are very very limited.

hapa

Went for a second opinion on radiation and I'm feeling a little better today. I still hate my boobs. I took a picture of the old ones before surgery and while they were nothing to right home about, they still looked better than they do now. Even if you ignore the scars.

Amica - I'm sorry about your cat. And about your problems with your oncologist and the Canadian healthcare system. And being isolated in the middle of nowhere with just your 94 year old dad and not much to look forward to on a daily basis. Sometimes it feels like you can't bear one more bad thing...and then one more bad thing happens. Also, there is no need to apologize for being negative, especially in this thread (or is that just Canada rubbing off on you?).

Amica

thanks hapa - I appreciate your support. I've been particularly distressed this past week because I had my PET-CT scan a week ago, and STILL no results. The uncertainty is making me so anxious. I don't know what is taking so long. Also I met with my oncologist last week and she basically told me off and told me to stop phoning them so much, only phone when it's urgent. Normally I would have phoned them to ask if my PET results were in yet, and honestly I don't know what is wrong with phoning them, God forbid they should spend a minute looking to see if my results are in.

My old cat has been sick a long time, and most people would have had her put to sleep long ago, but I just could not bear it right now. She is not suffering, but she pees all over the place, stuff like that.

I'm glad you got a second opinion on the radiation and feel a bit better. I'm sorry your cosmetic result is not what you'd wish--is there any chance that in the future a plastic surgeon could tweak it a bit?

take care,

Amica

hapa

I go back to work tomorrow. Still don't know how I'm going to keep my shit together.

I think I want to do my radiation in Houston. Which means another six weeks off work.

7of9

If it's any consolation - work is a good distraction from diagnosis, treatment, reading the odds etc. A wonderful woman started working at our place who was an engineer. She is just looking for something to do part time so she only works with us 1 -2 days a week now that she's almost retired. She runs a soup kitchen one day a week. We went to help her (my husband son and I this spring) and holy crap do I feel more humbled by what I have. Being positive is a choice albeit a very hard one and one we have to make day after day after day. I was off work first time diagnosed, worked through 2nd time which I found easier/better for me mentally even if exhausting physically. Best wishes and sending you positive energy. Hair and time do make a difference. My husband reminded me that although I have scars at least my implants don't look like golf balls in a tube socks which is where my old boobs were headed anyway.

PhoenixCruiser

(((hugs)))

Sorry Hapa. I found myself nodding in agreement so many times reading your post.

Amica

Hapa, good luck at work tomorrow! And if you end up taking 6 more weeks off, power to you. you've got to do what's right for you.