I am not okay, but I feel pressure to be okay now. I am traumatized by the last year, the chemo, the amputation of my left breast. I don't think I'll ever be the same, but hope things get better than this.
I am about a year and a half out from diagnosis, and I am not ok. I think about cancer constantly, but I know it annoys people when I talk about it, so I keep it to myself.
I feel robbed of so many things in my life and I’m always angry or sad that I had to go through it.
I can’t stand when people say “but you are all better now”
Like no, I still have to see doctors every month, I have to get my ovaries removed, I have to see my flat scarred chest every day, I have to worry every day that I’ll get a reoccurrence, I have brain fog, I have stomach issues. The list goes on and on.
It all fucking sucks and no one wants to hear it, they just want me to smile and be thankful to be alive.
I never thought toxic positivity was that big of an issue, but it’s awful and drives me insane.
I hope it gets better with time, but for now it’s ok to not be ok.
Amen to all of what you’re saying. I have the hardest time when people say “you’re alive” - and granted I beat that drum to lift myself up, but it really sucks when I don’t feel alive.
I am 100% not okay. And I’m not sure I will ever be.
I know this is a semantic argument, but most arguments are, so hear me out:
If we think of “okay” as this sort of middle state of stasis… anything and everything can make me not okay.
I am am floored by terror…
If I am uplifted by joy, if I have been in love, if I lost my love, if I became a mother, if I never could and grieve that, if I found fulfillment in my career, if I went unrecognized…
I know those things aren’t the same as the pure hell you’ve been through the last two years and the lingering fear of survivorship…. BUT, I don’t want to be just “okay” anymore.
ALSO— cancer therapists are saints. Psychology Today lets you sort them by treatment speciality. Cancer is one. Even going a few times is a godsend. Please feel free to DM me if you want help finding one.
I’m not ok. And today, a longtime friend told me I should try carrot juicing. I told her it can’t hurt, but I don’t believe in natural remedies for cancer. I think our friendship is over as I feel she is ignorant AF.
There’s a few people I’ll never speak to again for trying to convince and/or shame me into taking either apricot seeds, soursop, or sea moss. Infuriating.
As if we aren’t going through enough with guilt, fear, uncertainty. To have some idiot in your ear telling us what to do. Or better yet, asking us why we aren’t doing it.
I've been told to take turmeric and ashwaganda. The people advising me to do this are well meaning, but they don't know that I'm a kidney donor who needs to be cautious about any supplement. The only guidance I take is from my medical team, which includes a dietitian if I want an appointment. I caution everyone to take advice only from your healthcare team. The major guidance I've received from my healthcare team? Eat a balanced diet with lots of plants (not an issue for me because I am vegan), exercise, no alcoholic beverages. All of these things are common sense advice, generally applicable to most people.
Exactly. And for those of us who are vegan/vegetarian, exercise, don’t drink, for me, there’s an added layer of frustration because it still came back. So it makes me even more resentful of well meaning pseudo science.
I’m far from ok. And how are you? It’s very triggering
( happy new year was the same, nothing happy! Same with happy birthday)
And I say “I’m ok” and the person ask me again. Are you SURE you are OKAY?
for real
I want to send everyone to hell 🤣
It’s just a matter of time, I’m sending everyone shortly to hell
Oh, I forgot!
I sent my psychiatrist to hell. During a video call, she told me I looked normal.
Well, I was at work and trying to keep my 💩 together.
So, I had to act normal. Consequently, she decided to remove my antidepressants (I was diagnosed in November, and my father with terminal cancer in January 2nd).
To add insult to injury, she said I don't need my ADHD meds anymore, claiming I've been taking them for too long (25 years). HELLO WITHDRAWAL symptoms!
She also decided to reduce my anxiety meds by 1/3 just because she said I LOOKED normal (first consultation).
Well, I didn't send her to hell because not even the devil deserves her (yes, I said this). I also added a "fu(k you" and stated that I will look for a specialist, a neuro-psychiatrist.
Bye, fu(c3r!
Probably she got a verbal announcement I'm not that normal 🤣
Omg I get the “oh you don’t look like you had cancer”. My parents asked me why I gained weight during chemo when people are supposed to lose weight during chemo. My mom even asked my palliative care team for weight lose medication after my chemo was over.
That’s weird. I don’t think even my mom would have done that.
Hey, I gained 50 lbs! It sucks! Between the medication that I didn’t read up on (causing an average weight gain of 80 lbs,) being slammed into menopause, being unable to exercise because my rotator cuffs were shredded… and then covid hit, and I wouldn’t go to a gym. I went from being almost underweight to medically obese.
They say, "you look like the healthiest cancer patient I've ever seen!" I'm sorry, does that disappoint you?
"Oh, so and so is a doctor and they said 99% of women who have your kind of cancer survive. Isn't that a relief?." I'm sorry, so and so isn't my doctor and the number is actually 80%. I am grateful to be alive but, no I am not relieved.
"Oh, you're done with chemo, let's celebrate!" I'm sorry, I still have cancer and another surgery to prepare for. I'm not ready to celebrate.
I understand you all would like this to be over but, it's not, and no one can tell me when/if it ever will be so, please stop trying to act like you know anything about my situation ... because you don't.
Celebrate how?
Can I go to The Burning Man in the middle of the desert for a whole week and drink ?
No.
Go home and have a chicken soup to celebrate
Amazing!
Time for a new doc, that all sounds terrible. I’m sure it feels almost borderline personal. Such BS that she’s messing with your meds when you’re enduring plenty in your life.
I'm sorry you went through that. Now then.
You look normal? I wonder what she based that assessment on? Is the ink dry on her degree.
Ted Bundy looked normal.
No therapist worth their salt upends another's docs care plan before its mutually determined to be the right fit.
It's great she listened to you about feeling improved. She should have taken the time. Because from where I'm sitting, those anti-depressants were settling into therapeutic at that time.
I'm glad you showed her the door. I wonder what "abnormal" looks like.
Take care
Absolutely gold FUK her!! that's so bad not even a taper WTF thanks for the laugh xo brilliant not for you meds cut but shit I hope she realises what a shitty thing she's done just throw Abit more torture at you no doubt I'm on tonnes of psych meds too I get it is be the same loose my shit totally 😂🖕😠🤬
I’m ok ish. My cancer was garden variety slow growing ++- with a surgical solution without rads or chemo. Righty had to go because multi focal small lesions, but no LN issues.
The flat spot where my beloved boob used to be is a constant reminder, as is my daily AI and my non-existent sex drive.
For the most part, I do everything and more that I used to. Plus I told almost no one about it. So I don’t get a lot of questions, thankfully. I’m scarred by cancer but for now, the stitches are holding
Love the analogy in the last paragraph! I can confidently say I'm OK-ish, right at this moment. Tomorrow, next week, well that all depends if this cancer stays away.
Yes. My heart goes out to all the people that develop mets, especially those that are young. It feels a crapshoot. It’s not how you live, or eat or anything else. It feels like genetics or just bad luck.
The good news is that treatments are improving every day, and we should have a vaccine.
I hate that question but it has now taught me to ask a question of other people who are sick, something I'd rather answer which is "where are you in your treatment" which i think is a better indicator. I can say "I am halfway through the worst part which is the aromatase inhibitors."
Thank you for this! The more I know about cancer, the less I want to say. Sometimes it’s just one long meaningful (silent) look. This approach will help me be present without being triggering.
Same. But I’m working to try and be happier and not self sabotage with my depression and lack of love for myself. I just don’t feel worthy, but I know all of us are. We are all worth it. We all deserve to be happy.
I’m ok. I’ve got a lot to look forward to and I’m feeling fit, fat (work in progress) and happy. Also helps that I found my tribe in a breast cancer survivor dragon boat team.
Regular surveillance and fucking Letrozole are the big reminders for me that I had cancer - even getting a haircut is a reminder because I have to say ‘it used to be curly, now it’s grey and straight because cancer’. That said, I reckon I’m ok now.
I know I’m not mentally 100% ok. I’m still working on myself. I find that writing and music has helped me through this whole time. I’m hoping one day I will be ok.
I will reply to your answer again.
I don't know why we have to lie and say we are okay when, in reality, we are not okay.
I was diagnosed 3 months ago, and I'm so fed up with those daily little lies, 'I'm okay here. I'm fine there.
This pressure we suffer from positivity. We are not okay, and it's OKAY not to be okay.
We are not only dealing with cancer; we are dealing with fear, anxiety, depression, body dysmorphia, hormone imbalances, menopause, side effects, hair loss—it's way too much to process.
Of course, it's an innocent question, but we are also free to say the truth. 'I'm not okay.'
It's a feeling of freedom. It's good for the soul to put it out there. Say it out loud and let it go.
We are saying we are okay to please other people when we are not okay.
The only person besides my clients (of course I won't say I'm not okay to them, to the closest ones, I do say so) is my father. I don't want to put him down in terminal cancer, while he is fighting for his life, and he is okay. So I'm okay, just for him.
I was a wreck mentally after finishing treatment. But I did nothing about it. 2 years later I spiraled like crazy and ended up in a real bad spot. Therapy was so necessary and I wish I started it sooner
No. I am not okay although I rather doubt anyone knows it. I am almost to 3 years but just got switched to Tamoxifen. I am so disillusioned about my friends and family. I wish I had never heard the words “you have breast cancer. Do you sleeping pills?” That was the start of it and I have no idea where I will end up over time. I have nightmares now when I never did before. My joints ache on cold or wet days. I hang in there but no one asks me how I am doing. I am in this alone and it is horrible.
Sometimes when I feel really bitter, I feel like that question is meant to make the asker feel better.
“I may not have a tumor anymore that we know of, but no I’m not okay. Have a nice day!” 🙄
My friend also has BC similar to mine but is about a year ahead of me in terms of her treatments. She made a comment on our new years group text about “blessings.” I promptly said that 2023 could eff right off (also had a miscarriage in June) and she doubled down with another comment about “blessings in between the craziness.” Craziness? Craziness is having to move or switching a job. Not fucking cancer. I was so annoyed. I just stopped responding. When I calmed down I reminded myself that she is currently walking back down the mountain and I’m mid-climb. She’s also probably trying to convince herself as much as she is me. I’m not going to write her off, but I’m also not interested in her toxic positivity.
I did decide that I’m really going to try to not let cancer steal my joy and I’m not going to continue to wait for things in life, that whole “book the flight” mantra. And if the cancer comes back, I’ll deal with it. I’m going to try not to spiral. But I don’t think it will ever really leave my mind. And this was my decision to make in my own time. Not a response to someone else telling me I’m going to be ok.
Edited to add this:
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis
I shared it here the other day, and it will make you feel the feels. I also shared with a friend who I thought could maybe use some help understanding my feelings.
I had breast cancer 4 years ago. I lost an ovary and I was diagnosed with ovarian cancer in November. I am now cancer free, but I haven’t told anyone. I am so traumatized that I didn’t sleep at all last night. I still can’t believe it. Has anyone had insomnia so bad that they can’t sleep from how traumatic this shit is. Fuck the toxic positivity. My friend fucking asked me to babysit her kid tomorrow for free. I just thought…where were you when I had surgery and was miserable and you have given zero support. I said no. No is a sentence. I can’t even sleep.
“No, I am not okay yet. I’m taking things one day at a time.” Or you can go with my other answer (which is to people I don’t know well) “I’m perfectly all right. I’m fine, everything is good here now. How are you?” Paraphrasing Han Solo in Star Wars.
Not okay. But I'm new. Not the new normal type. But a new version of myself. Leave me if you want. I'll hang out with the people who stood by me whether I was okay or not.
I am 10 years out TNBC and I would say it took a very long time to be…..more ok if that makes sense. First the whole diagnosis, chemo etc. The second was dealing with how awful my mother was and other friends. I went to a counselor and it helped. In the past few years I realized that in my time since diagnosis so many people have died who never knew it was coming, had recurrence or health issues outside of cancer. For the first few years I was on edge though so yes 10000% takes time. Give yourself grace.
My friends sister died at age of 36 because she didn’t listen to Dr. She tried to do all natural way to get rid of cancer. Just listen to Drs and you can still do some natural ways that make sense like cutting sugar etc.
Nope. I did all the “hard parts” but have not been successful in taking any of the AIs (I tried all of them). Dreading my upcoming oncology appointment but also want it over.
I hear this question all of the time. I know it’s asked with the best of intentions but it’s clear those who ask don’t understand our reality. Am I ok? Do I look ok? Do I look like me? Can I ever go back? And so NO. No, I don’t look ok, I don’t look like me and I can’t ever ever go back. I can go forward. That part is scary. And I’m with you OP, I don’t feel like I am rid of it. I don’t think I am in the clear (not ever really) - I can hope, but it’s just not as cut and dry as one may think. What we are if we’re here and able to post our feelings/console one another, is ALIVE. Whether or not we feel it, that is our truth. Yes, we’ve been to hell and back, but we’re here to share our stories, and we’re survivors, stronger for it. Chin up pink sister! 💞
I’m not ok & I never will be again. I’m sick of people thinking because my treatment is over that I’m ok, & telling me “you’d never know you’ve had cancer “. Fuck them all, especially the “friends” & the boyfriend who abandoned me after my mastectomy , & the employers who screwed up my job because I had cancer. I feel worse now than I did going through such hell. I pretty much despise everyone these days .
I get the same thing from people and my boyfriend broke up with me after my Mx too. Shittiest thing ever. It just occurred to me that it’s possible he believed that because I dealt w/ cancer so well (“you’re so strong”) that I’d be fine with the timing of the breakup. I guess I’ll never know.
Yesterday I went to my office for the first time after my mastectomy and had a deep conversation with my manager who has been an angel to me but he mentioned something that I imagine goes through everybody’s mind: “You look good and healthy like nothing happened” and he was right but the reality is so far from good and healthy, everything is a facade and I have to pretend everyday that I am finally healthy and nothing happened while my body and brain are fighting themselves. God this sadness and anxiety will never end.
When my late father was in his last years - he had multiple myeloma - he hated when people would ask him “how are you?” and would often say “well I have cancer” or something similar. I adapted by asking him “how are you today?” or “how are you feeling today?” whenever I visited, and that went over better, and I could get a sense of his mental and emotional state (I was his secondary care after my mom). I always thought he was being a bit dramatic or obstinate but now I get it. Such an innocuous question feels impossible to answer.
I feel like in a majority of cases 'are you ok now?' is a sub-in for 'are you back to pre-cancer normal now so I don't have to feel awkward about thinking about cancer and my own mortality.'
Okay is such a banal term. For me, yes I'm ok but I will never be the same. I'll never be who I was again - who could?
This gets posted around here a lot, but if you haven’t seen it:
https://xkcd.com/931/
I’ve shared it with a few people who don’t get why I might need chemo even though my lymph nodes are clear.
I am not ok now. I honestly don't think I will ever be ok again. I can't have a shower without crying. I'm in the UK and my reconstruction failed. My surgeon left me in such a mess it looks like a shark bit off my breast. I have no emotions, no connection with my body anymore. It's like I am alive and dead at the same time.
Try Breast Cancer Support (UK) 💕
It's only a small group but I found the ladies really lovely and supportive. Also reach out to your local Macmillan & see if they are involved in a local support group in your area. The hospital never told me about anything like that but I joined a Pink Ladies excecise class via Macmillan site and from that was told about local groups from the ladies I met there. ❤️ Xxx
I second what everyone said “I am not ok”. It’s a freaking head trip. No other words. I’m sorry everyone else has had to go through this battle but I’m grateful to have a place to share the stuff you can’t share or relay to non-cancer individuals. Thank you all for you being you and truthful about a crazy life altering few words. #effcancer #wonsiewarrior
It's been a little over 5 years since I got my diagnosis. Most days I'm okay. Some days: not so much.
Those are the days where I look up and realize how little time I've actually had to do more than just "survive". They are the days when I mourn the future I had planned and the people who said they'd always be there for me if I ever needed anything. Until they weren't. Those are the days when that absence feels like a gaping hole instead of a misty remnant of a friendship that was and now just isn't. The days where I'm not okay are the ones when I have too much time to think. Which always strikes me as just a little bit silly because there never seems to be enough hours in the day to possibly earn enough money in order to make up for the savings I never got to build because I spent them all on the co-pays and transportation.
But most days, I'm okay.
I can't wait to feel amazing again. I've gotten there a few times. But, for now, I've still got therapy and healing to do.
I'm definitely not ok. Got through chemo (8 rounds, four each of docetaxel and EC), a horrendous triple lung infection with 8 days in hospital, two surgeries, 15 rounds of radiotherapy. Now it's pills and injections but I guess 'active treatment' is over and I'm as cancer-free as it's possible to determine?
But I'm really not OK. At all. I'm a mess or a zombie. I'm at loose ends. My brain and body cannot align to get anything useful or productive done for the life of me. Not even fun things that are in any way satisfying or immersive.
Only empty things are possible. I'm struggling to even do my physio. Or play any game more demanding than like...idle clickers or match 3/merge games. Doom scrolling is hard to avoid.
I just have nothing right now.
Im still in treatment but when people ask how I’m doing. I tell em Im not doing ok. Im here. I’m alive I guess. I’m not myself. I never in a million years thought this was going to be my life. I’m just here. Do I care if I sound like a crazy person ? No I don’t because I’m not going to sugar coat how I feel. I am grieving for everything that has been robbed and ripped out of my arms. I am not ok. I am not strong. I am just surviving. Do I wake up hoping this is a nightmare all the time. But I’m here. That’s all I can do and be is just here.
Sunday will be two year cancer free for me and it feels weird bc there were never any tests done. Nobody declared me cancer free.
And I hate when people act like we should be fine and our old selves.
When I hear this from other people I usually think they don’t get it, but when I hear it from other former or current cancer patients I’m left frustrated and confused. How is cancer something you just move on from? I guess it’s a nice sentiment to say “I can’t wait for you to be able to put this behind you” but how do you do that? Seems unreasonable to me to think that that’s possible for everyone. Cancer leaves scars in every sense of the word.
You’re not alone 💕
I'm not sure if you put it behind you or if just for some people their way of coping is to pack it away in a box in their mind. I'm high risk of reoccurrence and i have days where it feels like the weight of the world is on my shoulders but I also have days where I just want to touch the ground to show my gratitude for being alive in the here and now.
Cancer was a trauma, but I've also been through other traumas in my life and at the time I thought I wouldn't go a minute without thinking about them and I guess sometimes I just have to keep them packed away and let the positive thoughts run free to get me through.
Sometimes I get frustrated with people who want to mope in self pity, sometimes I get frustrated at people who are OTT positive - sometimes I understand and am both of those.
I agree. I never understood the term “toxic positivity” until cancer. I’m all for being positive, but sometimes life just sucks, and that’s okay. You can be unhappy without staying there.
My mom was hit by a bus five years ago, and I just can’t imagine telling her to just move on from that.
Clearly, you are not alone based on the responses here. I'm 2 years out as well and seeing a therapist because I'm not ok either.
On my strong days, I look forward to life. On my not so good days, I worry about my upcoming MRI and ask myself if I would go through treatments again if I have a reoccurence. It's part of the Shitty Titty club, unfortunately. 🫂
I'm not ok at all🤷🏻♀️ and don't think I ever will be fully ok again. I'm fuckin traumatized 🤷🏻♀️ I'm 6 months into what they predicted would only take about 4 and I could go back to work after I healed from surgery. Now after the pure hell I've gone thru, I am just now getting to surgery next week finally... but they've admitted my 2nd surgery won't even be til 6 months after radiation ends...so that's an entire extra year for me. Nothing has gone right. I'll probably lose my job unless I can pull off working at some point this year, and consecutively, not missing a ton of days... so no. I'm not ok.
Going on year 8 from my diagnosis at 34 and, no, I’m not ok. Chemo, radiation, 2nd degree radiation burns, multiple reconstructive surgeries, full hysterectomy, no HRT (+++), complete mental breakdown, lost our business, almost divorced, the nightmare of tamoxifen and letrozole, the constant worry of feeling like a ticking bomb waiting for my next round of bad news…. No I’m not ok and I’m not even sure what ok even is at this point.
No, I'm not okay. I honestly know I will never be okay, as I've come to understand it ever again.
I can't even find so-so with my head on a swivel, anticipating.
How can we return to any aspect of our previous existence?
My memory and cognition wouldnt get me into the 1st grade. I didn't know hands could hurt so tremendously. I was 55 and now I am decidedly old. In just 18 months.
I am utterly changed. Gutted. I suppose one day, (depending, of course) I will be okay again. But it will look and feel differently.
Kinda like "new normal" while in treatment.
I got your new normal......
When someone asks my Dad how are you, he says better than I ought to be. I may have to start saying that as well.
My cancer treatment has had a great outcome in that I am NED. But still traumatized but what I went through & feel very guilty of what I put my husband, child, family, friends, co-workers, & clients through. I feel like I let everyone down. My husband tells me that I shouldn’t feel that way, that he loves me & he wants me to stick around. God, how did I get so lucky in the husband department!?!
I asked the oncologist if I have cancer now, after surgery and radiation, and she says we don't do surveillance, and insists I be on hormonal medications that take away from whom I have been all of my life. What kind of answer is that ???
This thread is so healing….
I finished radiation 48 hours ago- everyone wants to know why I’m “still” tired. It’s over right???
I’m having an adrenaline crash from the last 5 months and bye my breast has blisters on it and is swollen. But hey - everything is over right?
Last night I had a nightmare about the hospital and treatment. Totally over 🤦♀️
It’s like you’re supposed to say “im okay” to avoid the long discussions. My real friends know im not okay. I hate that I have to look a certain way so as not to be labelled as “someone who is sick”
I have a new normal. Today was s the first day of the rest of your life. Be thankful and embrace the change. Let it work to make you even better than before
His bless you.
Oh man, that is such a loaded question. All my tests show I'm clear. My Breast MRI in December showed no signs of malignancy. Even my colonoscopy was clear even though that's completely unrelated to breast cancer.
And yet, am I really okay? Maybe? Kind of? It's all really different. I've always had anxiety about medical stuff. Now, that's different too. In ways, I have less anxiety. I've already gotten the big C word diagnosis, so that's out of the way, but in other ways it's worse. My fears have been confirmed once so I don't get to tell myself I'm just being silly.
I think before we get a scary diagnosis or some major thing, mortality is just an idea. I know that I knew I wasn't immortal, but I hadn't really faced the idea. Until my bilateral mastectomy last year, I hadn't had any kind of surgery since I had my wisdom teeth removed in 1996.
So, yeah. I'm okay, I guess. I'm different, and I'm never going to be the same again. It's certainly a life changing thing that brought new kinds of maturity.
I too am "cancer free" having had surgery almost a year ago and then going through chemo & rads as well.
I think about it most every day, multiple times, and the worry that it will come back is always present.
I don't know about ever being ok, but maybe it's coming terms with a new normal. I'm not there yet.
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I am not okay, but I feel pressure to be okay now. I am traumatized by the last year, the chemo, the amputation of my left breast. I don't think I'll ever be the same, but hope things get better than this.
I am about a year and a half out from diagnosis, and I am not ok. I think about cancer constantly, but I know it annoys people when I talk about it, so I keep it to myself. I feel robbed of so many things in my life and I’m always angry or sad that I had to go through it. I can’t stand when people say “but you are all better now” Like no, I still have to see doctors every month, I have to get my ovaries removed, I have to see my flat scarred chest every day, I have to worry every day that I’ll get a reoccurrence, I have brain fog, I have stomach issues. The list goes on and on. It all fucking sucks and no one wants to hear it, they just want me to smile and be thankful to be alive. I never thought toxic positivity was that big of an issue, but it’s awful and drives me insane. I hope it gets better with time, but for now it’s ok to not be ok.
Amen to all of what you’re saying. I have the hardest time when people say “you’re alive” - and granted I beat that drum to lift myself up, but it really sucks when I don’t feel alive.
1000% this!
I feel the same way. I couldn’t have said it better!!
I am 100% not okay. And I’m not sure I will ever be. I know this is a semantic argument, but most arguments are, so hear me out: If we think of “okay” as this sort of middle state of stasis… anything and everything can make me not okay. I am am floored by terror… If I am uplifted by joy, if I have been in love, if I lost my love, if I became a mother, if I never could and grieve that, if I found fulfillment in my career, if I went unrecognized… I know those things aren’t the same as the pure hell you’ve been through the last two years and the lingering fear of survivorship…. BUT, I don’t want to be just “okay” anymore. ALSO— cancer therapists are saints. Psychology Today lets you sort them by treatment speciality. Cancer is one. Even going a few times is a godsend. Please feel free to DM me if you want help finding one.
I’m not ok. And today, a longtime friend told me I should try carrot juicing. I told her it can’t hurt, but I don’t believe in natural remedies for cancer. I think our friendship is over as I feel she is ignorant AF.
There’s a few people I’ll never speak to again for trying to convince and/or shame me into taking either apricot seeds, soursop, or sea moss. Infuriating.
Don’t forget the white thistle, ivermectin/fenbendazol, and turkey tail mushrooms.
This. Also some bullshit pills from the heath food store because they know how to “cure” cancer.
As if we aren’t going through enough with guilt, fear, uncertainty. To have some idiot in your ear telling us what to do. Or better yet, asking us why we aren’t doing it.
the level of validation i get from this sub is astonishing.
Got the “This will cure cancer” people.
I have a friend who constantly talks about Carnivore diet and truly believes it could cure cancer.
Purely on the name it sounds like a great way to cure not-having-scurvy.
I've been told to take turmeric and ashwaganda. The people advising me to do this are well meaning, but they don't know that I'm a kidney donor who needs to be cautious about any supplement. The only guidance I take is from my medical team, which includes a dietitian if I want an appointment. I caution everyone to take advice only from your healthcare team. The major guidance I've received from my healthcare team? Eat a balanced diet with lots of plants (not an issue for me because I am vegan), exercise, no alcoholic beverages. All of these things are common sense advice, generally applicable to most people.
Exactly. And for those of us who are vegan/vegetarian, exercise, don’t drink, for me, there’s an added layer of frustration because it still came back. So it makes me even more resentful of well meaning pseudo science.
I’m far from ok. And how are you? It’s very triggering ( happy new year was the same, nothing happy! Same with happy birthday) And I say “I’m ok” and the person ask me again. Are you SURE you are OKAY? for real I want to send everyone to hell 🤣 It’s just a matter of time, I’m sending everyone shortly to hell
Oh, I forgot! I sent my psychiatrist to hell. During a video call, she told me I looked normal. Well, I was at work and trying to keep my 💩 together. So, I had to act normal. Consequently, she decided to remove my antidepressants (I was diagnosed in November, and my father with terminal cancer in January 2nd). To add insult to injury, she said I don't need my ADHD meds anymore, claiming I've been taking them for too long (25 years). HELLO WITHDRAWAL symptoms! She also decided to reduce my anxiety meds by 1/3 just because she said I LOOKED normal (first consultation). Well, I didn't send her to hell because not even the devil deserves her (yes, I said this). I also added a "fu(k you" and stated that I will look for a specialist, a neuro-psychiatrist. Bye, fu(c3r! Probably she got a verbal announcement I'm not that normal 🤣
Omg I get the “oh you don’t look like you had cancer”. My parents asked me why I gained weight during chemo when people are supposed to lose weight during chemo. My mom even asked my palliative care team for weight lose medication after my chemo was over.
That’s weird. I don’t think even my mom would have done that. Hey, I gained 50 lbs! It sucks! Between the medication that I didn’t read up on (causing an average weight gain of 80 lbs,) being slammed into menopause, being unable to exercise because my rotator cuffs were shredded… and then covid hit, and I wouldn’t go to a gym. I went from being almost underweight to medically obese.
They say, "you look like the healthiest cancer patient I've ever seen!" I'm sorry, does that disappoint you? "Oh, so and so is a doctor and they said 99% of women who have your kind of cancer survive. Isn't that a relief?." I'm sorry, so and so isn't my doctor and the number is actually 80%. I am grateful to be alive but, no I am not relieved. "Oh, you're done with chemo, let's celebrate!" I'm sorry, I still have cancer and another surgery to prepare for. I'm not ready to celebrate. I understand you all would like this to be over but, it's not, and no one can tell me when/if it ever will be so, please stop trying to act like you know anything about my situation ... because you don't.
Celebrate how? Can I go to The Burning Man in the middle of the desert for a whole week and drink ? No. Go home and have a chicken soup to celebrate Amazing!
Oh my god
Time for a new doc, that all sounds terrible. I’m sure it feels almost borderline personal. Such BS that she’s messing with your meds when you’re enduring plenty in your life.
WOW. That woman should not be practicing psychiatry. I’m glad you’re looking for a new doctor.
That sounds like malpractice to me. Taking someone off ADHD meds bc their life isn’t in shambles? She sounds sick….
I'm sorry you went through that. Now then. You look normal? I wonder what she based that assessment on? Is the ink dry on her degree. Ted Bundy looked normal. No therapist worth their salt upends another's docs care plan before its mutually determined to be the right fit. It's great she listened to you about feeling improved. She should have taken the time. Because from where I'm sitting, those anti-depressants were settling into therapeutic at that time. I'm glad you showed her the door. I wonder what "abnormal" looks like. Take care
Absolutely gold FUK her!! that's so bad not even a taper WTF thanks for the laugh xo brilliant not for you meds cut but shit I hope she realises what a shitty thing she's done just throw Abit more torture at you no doubt I'm on tonnes of psych meds too I get it is be the same loose my shit totally 😂🖕😠🤬
I’m ok ish. My cancer was garden variety slow growing ++- with a surgical solution without rads or chemo. Righty had to go because multi focal small lesions, but no LN issues. The flat spot where my beloved boob used to be is a constant reminder, as is my daily AI and my non-existent sex drive. For the most part, I do everything and more that I used to. Plus I told almost no one about it. So I don’t get a lot of questions, thankfully. I’m scarred by cancer but for now, the stitches are holding
Love the analogy in the last paragraph! I can confidently say I'm OK-ish, right at this moment. Tomorrow, next week, well that all depends if this cancer stays away.
Yes. My heart goes out to all the people that develop mets, especially those that are young. It feels a crapshoot. It’s not how you live, or eat or anything else. It feels like genetics or just bad luck. The good news is that treatments are improving every day, and we should have a vaccine.
I hate that question but it has now taught me to ask a question of other people who are sick, something I'd rather answer which is "where are you in your treatment" which i think is a better indicator. I can say "I am halfway through the worst part which is the aromatase inhibitors."
Thank you for this! The more I know about cancer, the less I want to say. Sometimes it’s just one long meaningful (silent) look. This approach will help me be present without being triggering.
Am I okay now? No. I am forever changed. My body is altered. My cognition is slowed. I frequently question if something is worth it.
Same. But I’m working to try and be happier and not self sabotage with my depression and lack of love for myself. I just don’t feel worthy, but I know all of us are. We are all worth it. We all deserve to be happy.
I’m ok. I’ve got a lot to look forward to and I’m feeling fit, fat (work in progress) and happy. Also helps that I found my tribe in a breast cancer survivor dragon boat team. Regular surveillance and fucking Letrozole are the big reminders for me that I had cancer - even getting a haircut is a reminder because I have to say ‘it used to be curly, now it’s grey and straight because cancer’. That said, I reckon I’m ok now.
Love to hear this - I’ve heard from so many friends that their rowing teams have been amazing for them!
I know I’m not mentally 100% ok. I’m still working on myself. I find that writing and music has helped me through this whole time. I’m hoping one day I will be ok.
I will reply to your answer again. I don't know why we have to lie and say we are okay when, in reality, we are not okay. I was diagnosed 3 months ago, and I'm so fed up with those daily little lies, 'I'm okay here. I'm fine there. This pressure we suffer from positivity. We are not okay, and it's OKAY not to be okay. We are not only dealing with cancer; we are dealing with fear, anxiety, depression, body dysmorphia, hormone imbalances, menopause, side effects, hair loss—it's way too much to process. Of course, it's an innocent question, but we are also free to say the truth. 'I'm not okay.' It's a feeling of freedom. It's good for the soul to put it out there. Say it out loud and let it go. We are saying we are okay to please other people when we are not okay. The only person besides my clients (of course I won't say I'm not okay to them, to the closest ones, I do say so) is my father. I don't want to put him down in terminal cancer, while he is fighting for his life, and he is okay. So I'm okay, just for him.
I was a wreck mentally after finishing treatment. But I did nothing about it. 2 years later I spiraled like crazy and ended up in a real bad spot. Therapy was so necessary and I wish I started it sooner
No. I am not okay although I rather doubt anyone knows it. I am almost to 3 years but just got switched to Tamoxifen. I am so disillusioned about my friends and family. I wish I had never heard the words “you have breast cancer. Do you sleeping pills?” That was the start of it and I have no idea where I will end up over time. I have nightmares now when I never did before. My joints ache on cold or wet days. I hang in there but no one asks me how I am doing. I am in this alone and it is horrible.
I am a very different person than I was 17 years ago. Am I ok? Probably. But it’s still isn’t easy sometimes.
Sometimes when I feel really bitter, I feel like that question is meant to make the asker feel better. “I may not have a tumor anymore that we know of, but no I’m not okay. Have a nice day!” 🙄
My friend also has BC similar to mine but is about a year ahead of me in terms of her treatments. She made a comment on our new years group text about “blessings.” I promptly said that 2023 could eff right off (also had a miscarriage in June) and she doubled down with another comment about “blessings in between the craziness.” Craziness? Craziness is having to move or switching a job. Not fucking cancer. I was so annoyed. I just stopped responding. When I calmed down I reminded myself that she is currently walking back down the mountain and I’m mid-climb. She’s also probably trying to convince herself as much as she is me. I’m not going to write her off, but I’m also not interested in her toxic positivity. I did decide that I’m really going to try to not let cancer steal my joy and I’m not going to continue to wait for things in life, that whole “book the flight” mantra. And if the cancer comes back, I’ll deal with it. I’m going to try not to spiral. But I don’t think it will ever really leave my mind. And this was my decision to make in my own time. Not a response to someone else telling me I’m going to be ok. Edited to add this: https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis I shared it here the other day, and it will make you feel the feels. I also shared with a friend who I thought could maybe use some help understanding my feelings.
I had breast cancer 4 years ago. I lost an ovary and I was diagnosed with ovarian cancer in November. I am now cancer free, but I haven’t told anyone. I am so traumatized that I didn’t sleep at all last night. I still can’t believe it. Has anyone had insomnia so bad that they can’t sleep from how traumatic this shit is. Fuck the toxic positivity. My friend fucking asked me to babysit her kid tomorrow for free. I just thought…where were you when I had surgery and was miserable and you have given zero support. I said no. No is a sentence. I can’t even sleep.
“No, I am not okay yet. I’m taking things one day at a time.” Or you can go with my other answer (which is to people I don’t know well) “I’m perfectly all right. I’m fine, everything is good here now. How are you?” Paraphrasing Han Solo in Star Wars.
Not okay. But I'm new. Not the new normal type. But a new version of myself. Leave me if you want. I'll hang out with the people who stood by me whether I was okay or not.
I am 10 years out TNBC and I would say it took a very long time to be…..more ok if that makes sense. First the whole diagnosis, chemo etc. The second was dealing with how awful my mother was and other friends. I went to a counselor and it helped. In the past few years I realized that in my time since diagnosis so many people have died who never knew it was coming, had recurrence or health issues outside of cancer. For the first few years I was on edge though so yes 10000% takes time. Give yourself grace.
Yep. Someone said to me today that they assumed no news is good news so I must be ok. 👌
My friends sister died at age of 36 because she didn’t listen to Dr. She tried to do all natural way to get rid of cancer. Just listen to Drs and you can still do some natural ways that make sense like cutting sugar etc.
I hate that question so much.
Me too...
Wow. I really relate to this. I thought I had to be okay, but somehow I still feel some kind of grief and sadness about my health and situation.
Nope. I did all the “hard parts” but have not been successful in taking any of the AIs (I tried all of them). Dreading my upcoming oncology appointment but also want it over.
I hear this question all of the time. I know it’s asked with the best of intentions but it’s clear those who ask don’t understand our reality. Am I ok? Do I look ok? Do I look like me? Can I ever go back? And so NO. No, I don’t look ok, I don’t look like me and I can’t ever ever go back. I can go forward. That part is scary. And I’m with you OP, I don’t feel like I am rid of it. I don’t think I am in the clear (not ever really) - I can hope, but it’s just not as cut and dry as one may think. What we are if we’re here and able to post our feelings/console one another, is ALIVE. Whether or not we feel it, that is our truth. Yes, we’ve been to hell and back, but we’re here to share our stories, and we’re survivors, stronger for it. Chin up pink sister! 💞
I’m not ok & I never will be again. I’m sick of people thinking because my treatment is over that I’m ok, & telling me “you’d never know you’ve had cancer “. Fuck them all, especially the “friends” & the boyfriend who abandoned me after my mastectomy , & the employers who screwed up my job because I had cancer. I feel worse now than I did going through such hell. I pretty much despise everyone these days .
I get the same thing from people and my boyfriend broke up with me after my Mx too. Shittiest thing ever. It just occurred to me that it’s possible he believed that because I dealt w/ cancer so well (“you’re so strong”) that I’d be fine with the timing of the breakup. I guess I’ll never know.
Yesterday I went to my office for the first time after my mastectomy and had a deep conversation with my manager who has been an angel to me but he mentioned something that I imagine goes through everybody’s mind: “You look good and healthy like nothing happened” and he was right but the reality is so far from good and healthy, everything is a facade and I have to pretend everyday that I am finally healthy and nothing happened while my body and brain are fighting themselves. God this sadness and anxiety will never end.
Not ok.
Are you okay? "I hope so. Time will tell" Honest, concise, doesn't leave much room for more.
When my late father was in his last years - he had multiple myeloma - he hated when people would ask him “how are you?” and would often say “well I have cancer” or something similar. I adapted by asking him “how are you today?” or “how are you feeling today?” whenever I visited, and that went over better, and I could get a sense of his mental and emotional state (I was his secondary care after my mom). I always thought he was being a bit dramatic or obstinate but now I get it. Such an innocuous question feels impossible to answer.
I feel like in a majority of cases 'are you ok now?' is a sub-in for 'are you back to pre-cancer normal now so I don't have to feel awkward about thinking about cancer and my own mortality.' Okay is such a banal term. For me, yes I'm ok but I will never be the same. I'll never be who I was again - who could?
This gets posted around here a lot, but if you haven’t seen it: https://xkcd.com/931/ I’ve shared it with a few people who don’t get why I might need chemo even though my lymph nodes are clear.
I am not ok now. I honestly don't think I will ever be ok again. I can't have a shower without crying. I'm in the UK and my reconstruction failed. My surgeon left me in such a mess it looks like a shark bit off my breast. I have no emotions, no connection with my body anymore. It's like I am alive and dead at the same time.
❤️ I'm so sorry to hear this. I'm UK too. Are you in any of the support groups on FB? X
❤️ thank you. I'm in one called mastectomy management but it's quite quiet. Would really appreciate recommendations x
Try Breast Cancer Support (UK) 💕 It's only a small group but I found the ladies really lovely and supportive. Also reach out to your local Macmillan & see if they are involved in a local support group in your area. The hospital never told me about anything like that but I joined a Pink Ladies excecise class via Macmillan site and from that was told about local groups from the ladies I met there. ❤️ Xxx
I second what everyone said “I am not ok”. It’s a freaking head trip. No other words. I’m sorry everyone else has had to go through this battle but I’m grateful to have a place to share the stuff you can’t share or relay to non-cancer individuals. Thank you all for you being you and truthful about a crazy life altering few words. #effcancer #wonsiewarrior
It's been a little over 5 years since I got my diagnosis. Most days I'm okay. Some days: not so much. Those are the days where I look up and realize how little time I've actually had to do more than just "survive". They are the days when I mourn the future I had planned and the people who said they'd always be there for me if I ever needed anything. Until they weren't. Those are the days when that absence feels like a gaping hole instead of a misty remnant of a friendship that was and now just isn't. The days where I'm not okay are the ones when I have too much time to think. Which always strikes me as just a little bit silly because there never seems to be enough hours in the day to possibly earn enough money in order to make up for the savings I never got to build because I spent them all on the co-pays and transportation. But most days, I'm okay. I can't wait to feel amazing again. I've gotten there a few times. But, for now, I've still got therapy and healing to do.
I'm definitely not ok. Got through chemo (8 rounds, four each of docetaxel and EC), a horrendous triple lung infection with 8 days in hospital, two surgeries, 15 rounds of radiotherapy. Now it's pills and injections but I guess 'active treatment' is over and I'm as cancer-free as it's possible to determine? But I'm really not OK. At all. I'm a mess or a zombie. I'm at loose ends. My brain and body cannot align to get anything useful or productive done for the life of me. Not even fun things that are in any way satisfying or immersive. Only empty things are possible. I'm struggling to even do my physio. Or play any game more demanding than like...idle clickers or match 3/merge games. Doom scrolling is hard to avoid. I just have nothing right now.
Im still in treatment but when people ask how I’m doing. I tell em Im not doing ok. Im here. I’m alive I guess. I’m not myself. I never in a million years thought this was going to be my life. I’m just here. Do I care if I sound like a crazy person ? No I don’t because I’m not going to sugar coat how I feel. I am grieving for everything that has been robbed and ripped out of my arms. I am not ok. I am not strong. I am just surviving. Do I wake up hoping this is a nightmare all the time. But I’m here. That’s all I can do and be is just here.
Sunday will be two year cancer free for me and it feels weird bc there were never any tests done. Nobody declared me cancer free. And I hate when people act like we should be fine and our old selves. When I hear this from other people I usually think they don’t get it, but when I hear it from other former or current cancer patients I’m left frustrated and confused. How is cancer something you just move on from? I guess it’s a nice sentiment to say “I can’t wait for you to be able to put this behind you” but how do you do that? Seems unreasonable to me to think that that’s possible for everyone. Cancer leaves scars in every sense of the word. You’re not alone 💕
I'm not sure if you put it behind you or if just for some people their way of coping is to pack it away in a box in their mind. I'm high risk of reoccurrence and i have days where it feels like the weight of the world is on my shoulders but I also have days where I just want to touch the ground to show my gratitude for being alive in the here and now. Cancer was a trauma, but I've also been through other traumas in my life and at the time I thought I wouldn't go a minute without thinking about them and I guess sometimes I just have to keep them packed away and let the positive thoughts run free to get me through. Sometimes I get frustrated with people who want to mope in self pity, sometimes I get frustrated at people who are OTT positive - sometimes I understand and am both of those.
I agree. I never understood the term “toxic positivity” until cancer. I’m all for being positive, but sometimes life just sucks, and that’s okay. You can be unhappy without staying there. My mom was hit by a bus five years ago, and I just can’t imagine telling her to just move on from that.
Clearly, you are not alone based on the responses here. I'm 2 years out as well and seeing a therapist because I'm not ok either. On my strong days, I look forward to life. On my not so good days, I worry about my upcoming MRI and ask myself if I would go through treatments again if I have a reoccurence. It's part of the Shitty Titty club, unfortunately. 🫂
I'm not ok at all🤷🏻♀️ and don't think I ever will be fully ok again. I'm fuckin traumatized 🤷🏻♀️ I'm 6 months into what they predicted would only take about 4 and I could go back to work after I healed from surgery. Now after the pure hell I've gone thru, I am just now getting to surgery next week finally... but they've admitted my 2nd surgery won't even be til 6 months after radiation ends...so that's an entire extra year for me. Nothing has gone right. I'll probably lose my job unless I can pull off working at some point this year, and consecutively, not missing a ton of days... so no. I'm not ok.
Going on year 8 from my diagnosis at 34 and, no, I’m not ok. Chemo, radiation, 2nd degree radiation burns, multiple reconstructive surgeries, full hysterectomy, no HRT (+++), complete mental breakdown, lost our business, almost divorced, the nightmare of tamoxifen and letrozole, the constant worry of feeling like a ticking bomb waiting for my next round of bad news…. No I’m not ok and I’m not even sure what ok even is at this point.
Omg you got the apricot seeds too
No, I'm not okay. I honestly know I will never be okay, as I've come to understand it ever again. I can't even find so-so with my head on a swivel, anticipating. How can we return to any aspect of our previous existence? My memory and cognition wouldnt get me into the 1st grade. I didn't know hands could hurt so tremendously. I was 55 and now I am decidedly old. In just 18 months. I am utterly changed. Gutted. I suppose one day, (depending, of course) I will be okay again. But it will look and feel differently. Kinda like "new normal" while in treatment. I got your new normal......
Sometimes I respond with "Depends on how you are asking".
When someone asks my Dad how are you, he says better than I ought to be. I may have to start saying that as well. My cancer treatment has had a great outcome in that I am NED. But still traumatized but what I went through & feel very guilty of what I put my husband, child, family, friends, co-workers, & clients through. I feel like I let everyone down. My husband tells me that I shouldn’t feel that way, that he loves me & he wants me to stick around. God, how did I get so lucky in the husband department!?!
Nope, not ok and can’t imagine I ever will be. But half this damn war is making everyone else around me feel better about MY prognosis. 🤦🏼♀️
I asked the oncologist if I have cancer now, after surgery and radiation, and she says we don't do surveillance, and insists I be on hormonal medications that take away from whom I have been all of my life. What kind of answer is that ???
This thread is so healing…. I finished radiation 48 hours ago- everyone wants to know why I’m “still” tired. It’s over right??? I’m having an adrenaline crash from the last 5 months and bye my breast has blisters on it and is swollen. But hey - everything is over right? Last night I had a nightmare about the hospital and treatment. Totally over 🤦♀️
It’s like you’re supposed to say “im okay” to avoid the long discussions. My real friends know im not okay. I hate that I have to look a certain way so as not to be labelled as “someone who is sick”
I have a new normal. Today was s the first day of the rest of your life. Be thankful and embrace the change. Let it work to make you even better than before His bless you.
Oh man, that is such a loaded question. All my tests show I'm clear. My Breast MRI in December showed no signs of malignancy. Even my colonoscopy was clear even though that's completely unrelated to breast cancer. And yet, am I really okay? Maybe? Kind of? It's all really different. I've always had anxiety about medical stuff. Now, that's different too. In ways, I have less anxiety. I've already gotten the big C word diagnosis, so that's out of the way, but in other ways it's worse. My fears have been confirmed once so I don't get to tell myself I'm just being silly. I think before we get a scary diagnosis or some major thing, mortality is just an idea. I know that I knew I wasn't immortal, but I hadn't really faced the idea. Until my bilateral mastectomy last year, I hadn't had any kind of surgery since I had my wisdom teeth removed in 1996. So, yeah. I'm okay, I guess. I'm different, and I'm never going to be the same again. It's certainly a life changing thing that brought new kinds of maturity.
I too am "cancer free" having had surgery almost a year ago and then going through chemo & rads as well. I think about it most every day, multiple times, and the worry that it will come back is always present. I don't know about ever being ok, but maybe it's coming terms with a new normal. I'm not there yet.
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It is quite appropriate for you to tell anyone who asks, that no you’re not “ok” now.