Always in the back of your mind
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Not even a week after my surgeon called to give me a really good pathology report after my BMX, I noticed a lump on my leg. I googled, and realized that it must be a sarcoma. I did the EXACT same thing with this lump as I did when I was first called back from my mammogram. I spent day and evening reading about types of sarcoma and the chances of survival. I touched the stupid lump, looked at it fifty times a day, made my friends and hubby palpate it and tell me that it wasn't getting bigger. I drove myself (and probably my family) mad. Finally, I made an appointment with my pcp who requested an ultrasound. I told her that I was afraid it was sarcoma. She said no, my medical oncologist said no, but what do they know? These diagnoses are sooo sneaky! I had the ultrasound done last week and it didn't really show anything. No swelling, no mass, just a slight hypertrophy of the gastrocnemius muscle/achilles. The radiologist told me to have a rescan or ct scan if it continued to bother me without offering up any solid info. as to what it might be, but said absolutely not a sarcoma. But what if everyone is wrong? This is my reality right now and I hate it. I hate being preoccupied with every little twitch. The breast cancer diagnosis popped my bubble of (imaginary) invincibility. I see that it's done that to many of us, and living with constant fear of some kind of disease is not a great way to go through life. Maybe I'll go back to therapy or maybe I'll just be happy that right at this second, I feel good. Strong. Healthy. Not miserable. And maybe that's good enough.
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Arizonabound, yes. The bubble. I lived in a bright, colourful bubble of dumb. In which reality and badness happened to other people. Then I blossomed an ugly cancer in my boob and boom, there went my bubble. All that happy, floaty, mindlessness went with it too and in its place Ugly Reality. The bubble blinders are off and the view is..oohhhh, you mean I'm going to die? If not of this cancer then of something else? So it's like a contest to see what kills me? Cancer or heart disease or choking on a grape? Is one of those winning at life and death and one of those losing at life and death? Aren't they all kind of losing? It's all sort of stupid. So, well, this kinda sucks.
I think yours is the only Warren Zevon end quote. Epic. I think I will youtube his song, My Shit's Fucked Up. It seems appropriate.
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Runor…. "Your shit's fucked up?!" Love it. Add me to the growing list of Runor fans.
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I too enjoy runor's writing/posting style that capture all the dealings with this disease.
My bubble burst on 1/26/14 the day my father died of a heart attack. Always thought mom would go 1st, she was the sickly one, right? Think again. I walked around numb, not feeling anything for a long time. Too many things to do, I did the funeral planning, I raised my hand at a family meeting to say I will stay at my childhood home and take care of mom now. During the early days I'm pretty sure it was the power of prayer that kept me upright. Especially the day I went into work to tell them I wasn't able to return, at least not just yet. My legs were shaking and somehow I didn't fall over. My younger brother did a stand up job as being POA (power of attorney) and got all that ish done. He and my sister started looking for " A Place for Mom" She was an uncontrolled diabetic and was in the mid stages of dementia. Dementia, in my opinion is the absolute worst. Your loved ones are dying, going, gone, right in front of you. As her caregiver I was forced to separate my real mom from the demented one. It wasn't like I could just take her to the doctors and say, can I have my mom back please? It's a whole other story for another day. In short, we placed her in a facility and she passed within a year. I hated that I put her there. It was no consolation that she was safe and had 24/7 care that we were no longer able to provide. Selfishly, should I have had to? Again, I was walking around dumb and numb. A few months before mom passed my sister was diagnosed with breast cancer. I distinctly recall running from one end of the hospital to other, mom in one area, sister in another. I was an awful sister during this time, I was numb and dumb, oblivious to everything she was going through and was to endure over the course of the next year and a half!
I will just skip over 2016 and most of 2017. My mother in law became completely delusional, my husband moved her and his step dad to a safer ranch house. I spent a couple grand hiring a care coordinator for both of them. It was a mistake. Large dysfunctional family, you can guess the end of this story. My breast cancer diagnosis came and I was then able to give up caregiving for mother in law. It was not a 24/7 deal, I basically took care of her meds, and lent my support to her husband who was also sick.
After my active treatment, I was maybe a little smarter, but still numb. I started having a lot of grateful moments. Like lunch with my sister who said she didn't process all the things she had been through until recently. She is doing well. I check on her more often now. Traveling with my daughter. Having wonderful friends who ask how I am but understand that I may not want to talk about it, and if I do you better have a few hours!
Recently, I've become a little bitter at the process. My husband falling (right before his 60th b-day) and getting hurt and now possibly facing something more significant health wise. So, I got to thinking (you can start to smell it now!) maybe it's time for me to embrace death? Get ready for it! Learn how to drive the damn car!!!
My life is more than half over so why not spend the rest of time I'm here doing things that make me happy? Make others happy too. Of course not all of it is going to be. I just hope I'm smarter now and will handle things better now. I got pinched, not numb anymore.
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Ctmb, wow. Just wow. We stagger through and then look back in reflection and think , what the hell was that all about? That sucked. Why did that happen and how on earth did I survive it?
I have been spending large amounts of time in the past two years doing what I want. I come under heavy fire from several outside influences for this. From people who think I should be doing more, going to work, bringing in a wage so the heavy burden of earning doesn't fall entirely on my dear husband. Even dear husband has muttered that life would be easier if I made money. Easier than what? We've got a pretty damn good life. We don't starve, we pay our bills, we're warm in the winter, we see a dentist or doctor when we need to. No, we do not drive new vehicles and I happily buy most of my clothing, the very little I buy, second hand when I can. We do not take trips. We do not get new iphones nor do we own the gadgets and toys most of our friends do. But I do not get up every morning and wish I had the material things someone else had. No, I get up wishing I'd never had that ice water of cancer injected into my veins that made everything, even the good things, far away and remote and out of touch. I remember Hub going through a very bad time about 5 years back, he could not get a grip nor perspective on the situation and it was becoming a serious problem. I said to him, "Good god man, it's not like one of us has cancer." From my lips to god's ears! Indeed I did have cancer as I uttered those words and did not yet know it.
Now that I know it, and can't UNknow it, I have made a decision to do what I want and what I DON'T want is to give my time over to some other party who is going to commandeer my time for minimal return. I have been a housewife and mother. My earning ability is minimum wage. It's not like I sit around eating bonbons all day as I recline on the sofa. Yeah, right. I split wood and light furnace fires, feed animals and shovel shit, clean house and get groceries and do laundry and mow lawns and tend garden and prepare food and deal with all household emergencies, basically everything every other wife on the planet does. And this means I am not contributing? It has always made me furious that on his days off, when some major work needs doing around here, and I am in there with work gloves on doing what needs doing alongside Hub, mixing concrete, stacking wood, piling lumber, you name it. But when it's time to eat we come in the house, he sits down and turns on the tv and I prepare, serve and clean up food. THAT makes me very angry. He never feels, and I mean pretty much NEVER, that it is HIS job to handle food. It is okay for me to enter every arena of work that goes on around here, butchering animals, building, fence repair, you name it. But when it's break time he gets to have a break and I get to provide food. It was this situation that made me say no, I am not working outside the home. When he mutters that maybe I should get a job I mutter that maybe he should plan some meals, buy the groceries, cook and serve the meals and clean up after and I'll go get a job. But he has never taken up what might be his 'share' of domestic duties.
All this, sounding like a rant about my Hub, which it is not, is to say that I have decided I want to be PRESENT in my life and not doing things according to what anyone else expects. Today as I dumped a load of shit on the manure pile, I stood and looked at the trees. All the colours! Leaves twizzling slowly to the ground as the wind riffles the branches. I have quite a view, standing on the top of the shit pile. The dog was snuffling under a rotting tree, the horses were crunching their hay, I could hear a neighbour splitting wood, I could smell wood smoke from someone's house, staying warm. Give this up to do what someone else thinks I ought to be doing? Fuck that. I am going to live my life with as much presence and deliberate awareness that I can muster. I wonder, after I'm dead, will the memories of the night sky, brilliant with stars, or the feeling of admiration and love I have when I see my kid do her thing in life, will those things float with me into death? I hope so. I pray so. To that end I lock them in now, grasp them, capture them and cram them into my soul. I want this to be what I become when I die. Wind, trees, stars, people. CTMB, we must no longer be numb. The time for numb is over.
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Good for you mustering up your own presence and feeling it!
I tried for the millionth time to quit smoking. Even just a little bit and I can't do it. I'm miserable, angry and I really want to hurt somebody. This is also when I found out I wasn't numb anymore. I don't want to feel this way, and this is my presence. If I want a cigarette today I'm going to smoke one and I don't give a rat's ass who cares. If it makes me happy then I'm doing it. I know the risks. I also feel the damage is already done. Tomorrow I may not have one, the next day who knows? I'm doing whatever I feel good about doing and not trying to look too far down the road. Same thing with the wine. I've cut my consumption in 1/2 since diagnosis but when I want one I have one. Drinking part is easier.
One thing I did do right was back at the end of 2015 I was really unhappy at my job of almost 29 years, so I made up a resume, sent it out, and I quit. Never felt so good. Today, I'm a little overqualified for my position, make a little less money, but I am 5 miles from home. The atmosphere her is so laid back, and there is hardly ever any stress! It's great. There's a gym here and I do a class 1x per week which I also love and wish I could do more.
Being at home, and it sounds like you're on a working farm is HARD work!!!! Do you feel you have the same amount of energy as before? I know I don't. Set smaller projects now so I don't piss myself off by not getting them done.
Good day to everyone, hope all is going well as can be! I trust by getting some of this stuff out will help me deal with any and all future health events involving me or any of my loved ones. Thank you for reading and listening.
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CTMB, no I do not have the energy I used to. I think tamoxifen has made my joints not work the same way they used to. I trudge around like I'm 100 years old. Recently I have been saying to Hub it's time to sell this place and move somewhere where the endless tasks actually have an end in sight. Because here, it never ends. We do not exactly live on a working farm, but we do minor livestock raising on this rocky piece of ground. We are heavily forested and the forest alone creates untold work with trees dropping over, branches and cones always falling, not to mention the threat of forest fire. We heat our house with a wood fired furnace in the basement and keeping the house warm is a full time job in the winter. When I want heat I have to bash stuff with an axe, pile it correctly in the fire box, dump on a little diesel and sawdust to get things going, fool around with the stupid damper, open the basement door as smoke belches into the house because the damper never works right and I have to keep the fire door open to let oxygen into the flames. Ugh. I am jealous of people who just walk to the wall and flick a switch. I want a switch!!
This is VERY BAD of me but I'm going to say, smoke that cigarette! I absolutely agree with you - now that the horse is out of the barn, NOW people are going to get all organic and yogic and sugar free and alcohol free? Oh my god. I'm like, yes, thank you, I will have a second cinnamon bun. The truth and fact is that either this cancer will come back and kill me or something else will kill me (probably a mishap with the massive electric fencer we have, it's wired to push a current through 40 miles of fence line and we have it on 1/4 mile of fence, that thing will DROP an adult male!) but either way, cancer or something else, I'm not getting out alive. So, until then, I put will put salt on my food, drink more coffee than advisable and eat what the hell I want. I am contemplating taking up smoking those fat cigars, but nah, I'd just burn a hole in the sofa and that would piss me off.
Sometimes a reduction in pay for an increase in stress free working and an easier commute is the best money you'll ever not make in your life! Love your job, 'moke dat zigaret' and be present. Try not to kill anyone but let's face it, some days people are just begging for it!
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Ladies, I think I have found my people! This past year since diagnosis and the end of treatment in May - I am triple negative, so no continuing drugs for me - I having been searching for "support" from somewhere on how to move on. One friend recommended a Facebook page for Christians. Although I knew it wouldn't be perfect for me since I'm not religious other than being a lapsed Catholic, I tried it. Not good. Too much religion which appeared to be the last resort for some as they find themselves struggling with advanced disease. Not where I wanted to spend my first year. I tried other threads here based on the triple negative status which are helpful for various things, but not really exactly for me either with a lot of focus on the yoga/organic/nutrition stuff which, again, is helpful in an aspirational kind of way and understandable give we TNBCs don't have any ongoing treatment, but it's not my "spiritual" home.
Here, where I'm seeing a lot that is familiar to my thinking is the "eat the damn sandwich" motto. I eat the damn sandwich. I drink the damn wine. It may not be a bacon sandwich; it may be ice cream or french fries or mac & cheese. (It is the damn wine, though!) And I push back the guilty feeling as much as I can. I also am trying to do better about exercise, though, because I was trying to do that BEFORE, and I might as well keep on that because it actually makes me feel better. Basically, I just want to be me.
And I found this thread on Wednesday because I had just had my first post-diagnosis mammogram and was feeling particularly weirded out. I went into the darkened exam room and waited for the tech to come in - and cried. It was like I imagine a PTSD experience to be. The scene of the crime. The traumatic episode revisited. Then the tech came in, saw me crying, and said she was a "survivor" too. She called me "sister" and we hugged. I am not sure I consider myself a "survivor" or buy into that whole thing. But she was nice. And I stopped crying. And eventually someone - who didn't introduce himself, but who I assume was the radiologist - told me everything looked fine. Although I don't believe him. I'm sure he missed something, right? So I came here to the office and started researching how I felt. And I found you all. It's been a pleasure reading all of your posts. I finished reading all 65 of them yesterday, and found two more today. So thank you.
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Piperkay, your post moved me. That searching for something. Some call it religion. Some people are (or claim to be) converted into better people by their cancer. Is this a truth or is this a truth that they have convinced themselves of? Good question and a philosophical debate beyond my feeble brain capacity. I never felt cancer made me a better person. It made me a scared person. A person who felt I no longer fit into my own life. A person who could, at any moment, without warning, be yanked away from everyone and everything that matters. The truth is that that was always the case and is the case for 100% of us, 100% of the time. But we walk around as if it isn't. We had convinced ourselves of a truth that wasn't a truth (that death and illness happen to other people) and when that truth was shown to be a fat load of bullshit, that we CAN INDEED have our lives messed up my random, cosmic misery, it messes us up. Bad. And we become lost and confused.
You are still very new to all of this. A year? That's new. This is a fresh, raw wound in your life. If you're like me you lay in bed at night sometimes and think about the statistics. All those statistics, good and bad, that now are the guides that you grasp at to judge if you're okay or not. It took me a long time to decide that I was okay. I was also NOT okay. Those two states exist for me at the same time (they result in some really bad hair days!).
I have longer times not thinking about cancer. BUt as you say, there are trigger moments. I am waiting for my annual mamm, which got lost in the shuffle and no one called me and I had to start making calls and I'm still waiting for my appointment. My anxiety has shot through the roof. Life was feeling more normal, finally. I was not in that constant state of low level anxiety and sorrow. But every mamm time. EVERY TIME I am now fully aware that I am not safe. My state of okay is as fragile as a bubble in a rose patch. It is a tricky way to live. Looking normal, doing the normal things, nothing is the same, nothing ever will be. Welcome, PiperKay. If this feels like home, then put your feet up and pour yourself some of that wine!
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runor- You really summed up how I feel too. I am 2 years from treatment but taking Exemestane so I am constantly reminded that i am not normal or OK. As much as i try to put cancer in my rear view mirror, things happen and it's right in my face again. I have had recalls for 2 of 3 mammograms since I finished treatments. Most recently in late August, I had to wait 3 weeks for the 2nd mammogram and ultrasound. I thought my head would explode! It turned out to be some tiny cysts which means another mammogram and ultrasound in 6 months. I used to be able to talk to my husband about everything but he doesn't understand and doesn't want to hear about my fear of cancer recurrence. I try to put up a good front but it is hard some days.... Glad i found this thread so i don't feel so alone.
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Tunor!! Loved your post,, thank you!!
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Finally, somewhere I feel like someone understands. I thought I was crazy. I saw a social worker/therapist at the cancer center. She did not help. She was so upbeat and how can we find the positive side to everything I said. I wanted to puke on her. I was so frustrated when I left. Was I feeling "wrong"? Should I be upbeat? Yes, I caught mine really early. That's because I have always been so paranoid. I had huge breasts I am talking size G that's past a 4D in reality. So I was always so afraid that there would be something there that I wouldn't find. So I was on it all the time. Funny though the day I had the mamo I really wasn't expecting anything to be there. I had so many good ones that it really surprised me. Then it sank in and I said "of course you've been expecting this". But I didn't want my family panicking so I but on my it's going to be just fine face and kept everyone else upbeat. I had reduction surgery so that we could minimize any future issues and the lumpectomy. I passed out in the shower 10 days later and did some really horrible damage to the cancer side breast and some damage to the non cancer breast as well. I am still healing on the non-cancer side. I made it thru radiation treatments and have began the hormone therapy. I am on anastrozole and surviving the SE. When I finished my last tx I felt so let down and lost - I didn't know what to do. I asked what now and they all said well now we wait for the follow up mamo in a few months. And I thought " really, I have to wait a few months to see if all I have done has been worth it'? What if it didn't work, what if after all this there has to be more? And like others every little pain makes me wonder is it cancer? I have a lipoma and had it for years. It's just a fatty lump in my pelvic area. I never worried about it before, now it's a constant worry. Has it changed now will its just turn into cancer since I have had it in my body?
Everyone says oh great you finished tx so you're all good right? Really, do you think you'd be all good if someone said the C word to you? It's always there. Just like runor said "it's the monster in the back seat. He tries to backseat drive but I fight him off. But somedays I just get tired. And like others I wonder when I eat a nice piece of fudge as an indulgence am I killing myself with this little bite? Do I deny myself things I like because it's contents could grow my cancer, the cancer that I am not suppose to have anymore? When do I get to stop obsessing about that demon in the backseat? When will I be able to go a week without thinking about cancer? Do I have to keep pretending that I am good and nothings wrong just because the treatment is over? Is it ok to still feel angry and scared?
thanks to you guys and especially runor I am beginning to feel like it's ok to feel what I feel.
Hopefully we can keep talking about this?
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PinkArmor I'm glad you found this thread. You've seen here that lots of us are traveling with the same anxieties and worries that you have. To me, the social worker conversation you describe sounds horribly disappointing. Good heavens: pasting on a smile and suppressing how we really feel sounds like a recipe for MORE anxiety! Acknowledging your fears safely in a healthy way, and helping you figure out how to go forward despite the worries seems like the guidance she should have been giving you.
There's no magic wand for this part. Tincture of Time is probably the best medicine we have.
I am really thoughtful about how to support my own mental health. For me, that means: daily exercise, engagement with things that I find value in, and relationships that I nurture. This helps crowd out the fear stuff, because I'm distracted, nothing fancier than that! Finding things to engage in that feed my soul. Recently, I've had a chance to help some other people in my life who are having tough times (cooking, visiting, errands, etc), and I'm also staying active as an (amateur/hobby) musician.
And, having a safe place to talk about these fears also helps a lot. I have a few people in my life to talk to, where it's safe to vent and share those fears: DH and two sisters.
As far as minimizing risk of recurrence moving forward, I'm trying to balance that with Fun Units. I usually drink just 3 alcoholic drinks a week (even though I'd prefer 4 or 5), I'm avoiding cured meats and simple carbs, eating really nutritiously, and I exercise for 1 hour every day. All of these things were suggested to me in my Survivorship Training.
Actually, I really already did all these things, and I have gotten breast cancer twice, so maybe I should just live on chocolate cake and martinis, since doing all the good stuff did not keep cancer away. Ha ha. Sorry, that's my ironic sense of humor creeping in.
I do feel a bit Carpe Diem. I'm not putting off things that might give me some joy. Choosing to take a special trip sooner rather than later, for instance.
After my 2003 first breast cancer, this worry stuff was a dark cloud that gradually lightened up over time. Now, the dark anxiety cloud is back again after 2018's second (just my bad luck, a completely new one, not a recurrence of 2003's cancer) breast cancer, but at least I know that this currently very-present fear will recede a bit, again.
Going for a walk now in the sunshine with my dear friend. Trying to rack up Happy Moments like this one, and the more there are, the fewer Dark Cloud Times I seem to have....
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I appreciate you all so much. There’s no way a non-cancer person can get it like you do. I think I’ve gotten on with my life, but like Runor has illustrated so perfectly, it’s now always going to be in the back seat with us. So while I no longer have daily high-anxiety, it’s always breathing on the back of my neck when I finish a bottle of wine, when I allow myself to have some sugar, when my post-menopausal cystic ovary aches down my leg and I wonder if waiting another year before the next ultrasound is really the wisest choice. My functional md suggested testosterone pellets, since I’m near nonexistent on all hormones and cannot do estrogen or progesterone therapy - trying to figure out why I’m still so fatigued. Oh, but testosterone converts to estrodiol, so I have to have it with anastrazole - why, because I’ve had breast cancer. It might not cause crazy fear on a daily basis, but it just never ever leaves you.
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Reading all your posts and so many wise words! It's true a non-cancer person might struggle to get it, they would be rare.
I think I lost that 'innocence' of thinking it only happens to others, at a young age, as I was diagnosed with cancer at 15, fortunately survived it!
The next awful cancer episode was my darling son (third child) at only 18 months old diagnosed with liver cancer. Going through that absolute hell, thinking I would lose my baby and very nearly losing him on the operating table, I don't think it turned me into a better person either, it turned me into a very scared and angry person for a long while there. Fortunately he survived and is now 17 years old.
PinkArmor I get your frustration with the social worker. You put into words the irritation I have felt with certain people including one of my doctors, who seems to have little patience for any anxiety shown...I always get reminded in no nonsense way that my cancer was caught early, "you are cancer free now!". OK, great, but I have been through too much cancer stuff in my life to feel like I'm off the hook!
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WorryThePooh, if I might rage on your behalf briefly...are you fucking kidding me? Your doctor told you that you are cancer free?!? At 15 it got you and then your BABY got it and then it got you again..is your doctor functionally mentally retarded? Your life has been bombarded by cancer and this dipshit tells you you are cancer free? I would lose my mind. I would scream like a lunatic. Cancer free my fat ass! You have had more bombs lobbed at you than anyone should have to duck and dodge in a lifetime and the stupid doctor should stand and salute you, never mind telling you to skip off into the sunset sucking your lollipop because you're cancer free! Holy frikking shitballs I am furious just reading this! What an insult and utterly ignorant response to the VERY REAL devastation you have been dealt and still deal with. I hate your doctor. Seriously. I hope a kangaroo kicks him in the balls.
PinkArmour, it's too new for you. Too, too new. As Hiking Lady said, the Tincture of Time (good one!) is what you have to wait for. Painfully, anxiously, dreadfully. Then it will morph into you being more mentally okay (not great, not perfect, but okayer than you are now) until it's scan time or mamm time and then that anxiety shoots up again. At least that's how it is for me. I feel life is finally getting back to normal-ish but then when it's mamm time the tension goes off the scale. Life is the stretch between mamms. Or when my lymphedema suddenly flares for no reason that I can identify and that thought floats past, like a turd in the swimming pool, hmm, wonder if the cancer is back?
Ladies...hugs. Hugs and wine. Hugs and wine and chocolate. Like HikingLady said, chocolate and martinis. I plan to go to that party!
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Thank you runor, I enjoyed that rant on my behalf! Made me feel my annoyance with the doctor has been validated!
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Thanks ladies- it just helps to feel like what I feel is normal. That I don't have to put a big sunshine smile and skip off into the sunset because you are oh so lucky they caught it early and nothing really bad happened to you. Those are the comments that make me crazy. I am thankful that it was caught early and I haven't been thru what others have but I still had cancer. I still had to have extensive surgery and I still had to go thru treatments. And I still have to worry about it coming back or showing up somewhere new. The comment "well you beat it" makes me angry. I didn't beat it - it may be in hiding for now but it's still a lingering threat.
But for the most part I am a pretty optimistic person and I like others have decided not to put off things I really want to do and spend time with family. Not let the little things stress me out. I have an amazing husband that took such great care of me during all of this, he's priceless.
Maybe I should treat my mind like a limo and put up the window between me and that back seat monster and shut off the intercom. No talking allowed from the backseat!
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Yes, "did you beat it?" "Are you cured?" HOW THE HELL would I know??? When I say "I'm done* with treatment," I always mentally put an asterisk next to "done." I don't know that I'm done. I won't know if I'm done until I die without any recurrence or new cancer.
I'm happy, mostly calm. I feel good, though with less strength and endurance than before. (And I have reasonable, high hopes that I'll get back to my "before" level.) But it's all different now. Last night I saw the great friend of a great friend. He (yes, HE) was diagnosed with TNBC a couple of years ago. He was done* with treatment. Last night he told me that he has liver mets, just found out in the last few days. It feels like a punch in the gut, both for him and with the potential for me. Makes me so sad and angry.
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There is so much here that I just want to say "ditto" to. But I also love seeing the different ways you all have figured out how to deal with it - or not, at least not yet.
"Fun units," YES!" "Chocolate AND martinis," YES! (Not just chocolate martinis, mind you, but BOTH!) Trying to move forward and upward by taking that trip, exercising, spending time with friends and family. Getting rage-ful at inane comments by screwy people who think you're done after your last - scheduled - treatment. I feel like they're saying those things, though, not for your benefit exclusively, but their own. After all, they might get it too one day, so they want to believe it's beatable. Don't we all? Didn't we, too, in some way think that BEFORE?
So this is one question I find hard to answer, and maybe it's the English/French major with master's degrees in linguistics and library studies in me, but do I HAVE cancer? Have I HAD cancer? Am I HAVING cancer? Have I SURVIVED cancer? Certainly not yet as MountainMia just said. We won't know until/unless we die of something else, right? So sorry to hear about your friend, too, Mia. That word "mets" is probably scarier even than cancer, especially when you're TN. I have a neighbor who's been dealing with BC for more than 25 years, and she says it's like dealing with cockroaches. When one pops up, you whack it, and wait till the next one pops up and whack that one too. When she said that, I just looked at her with my mouth open. What an attitude!!
OK, it's Halloween, so maybe I'll put a horror movie on Netflix while I work... That'll surely distract me!
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Finally, words that express what I have been trying to find in myself. Thank you for all your comments, I've been reading through them for weeks and finally find a thread I can relate to. I work as an independent contractor, and recently I told my employer that I had to cut back my hours this year because it was too much (pain from letrozole). She immediately responded that I should have told her sooner that I was cutting back (but I did...) and that she didn't need the excuses, just the time I intended to work. This is a woman who several years ago professed us as "great friends" and colleagues. I guess I've used up my cancer cards, and she doesn't want to hear about it anymore. Really pissed me off. This December will be 8 years since diagnosis, and only recently have I experienced great fear, I guess some of it can be from the letrozole. I was on Tamox for 6 years and didn't experience any noticeable SEs, but how things have changed. I used to be able to really enjoy life post-treatment, got on with my career, traveled some, but it is now more difficult for sure.
PiperKay, I would say we have been treated for cancer and are still alive.
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PiperKay Have we HAD cancer, do we HAVE cancer, etc..... you ask....
I feel you on this question!!! I agree, it's weird to have so many ways to talk about it, and which is the most accurate way to describe our health story? My MO says that I've had a cancer diagnosis, and I've finished active treatment (surgery + chemo) according to NCCN protocols, which are the best statistical information informing effective treatment decisions. My AI is an ongoing treatment, part of that plan.
He reminds me that I once HAD cancer (2003) and it was CURED, so he'd like me to think of 2018 cancer in the same way. He feels hopeful that my treatment plan will lead to my being cured. He's a positive guy! However, we all know that sometimes Stages change, with new diagnoses.
The simple thing that I say is that I had cancer, got it treated, and I'm moving forward, and I have a good shot at having had it cured by my treatment.
When I want to share more than that, with people who are close to me, I say that I did have a serious diagnosis, and I underwent very serious treatment, and it's a hopeful thing (85-90% likely) that I am cured. However, we just don't know.
In 2003 I had a super-good-odds, "treatable," low-risk-of-recurrence, small, early stage, Grade 1 tumor, so it was a bit easier to breathe and feel calm. In 2018, it was scarier, because of being Grade 3. After 2003, I could say quite confidently that I had a super good chance of being cured, and I WAS cured. After 2018, I can say that I have a Pretty Darn Good chance of being cured, but it is absolutely not as sure a thing that this is behind me.
No more breasts, so at least it's not In Front Of Me. Ha ha. Breast cancer joke.
The Medical Assistant for my GI doc was getting my medical history over the phone a couple of months ago, before my scheduled colonoscopy. She asked me, "Are you in remission?" I felt like screaming, but I did not. I said, kindly and patiently, that her question should be about what my current treatment plan is, whether I'm recovered from chemo and surgery, etc., and that she should NOT ASK THAT QUESTION (I did not yell, but I said it in a friendly, explanatory tone), because we really never know. Of COURSE I'd like to be able to say that, but it's a weird term with breast cancer. Instead, we say "No evidence of disease / NED" which is more accurate, of course. "Remission" perhaps is more used with something like a blood cancer/ leukemia, I'm guessing, where it can be pushed down into non-active state? Anyway, with breast cancer, we don't hear that word used. We either get a new primary (like I did--it's rare, but it can happen), or we get a Recurrence (additional lymphatic involvement which is associated with a previous diagnosis and worsens our staging), or we get (distant) metastasis, which skips us ahead to Stage IV. Happily, lots of people do live for quite awhile with Stage IV these days, and even with a good quality of life. However, it's the Scary Thing / Back Seat Monster we'd like to not have happen to us, of course......
I go around balancing anger and fear against gratefulness. VERY grateful that I live in this century and in the first world, where I have a shot at getting cured and living longer. Grateful for modern medicine having tools to save my life. VERY furious that my body betrayed me and I've had to deal with this! Just being honest here.....
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Piperkay, yes! What is the proper tense to use? I HAD cancer (past tense)? That seems to offer a finality as if you had chicken pox, have recovered and life goes on as usual. Only that's not quite the truth? Not quite the whole story.
You could say you HAVE cancer ( present tense) although, they cut it out, nuked it with radiation, bombarded it with chemo and are daily blasting it with hormonals. So is it still there or is it gone? You have no evidence that there is cancer still in your body. You also have no evidence that there ISN'T cancer in your body.
People think that their simple question has a simple answer. Part of that is wishful thinking on part of people who care about you. They WANT you to be okay. They WANT you to die at 87 making out in the pool house with Juan the pool boy where you're vacationing in Mexico. They do not want you to to die grossly of cancer, they want you to die being wildly passionate.
My standard response is "I seem to be okay for now. Subject to change without notice." Because that, in a sentence, sums up the situation. Looks okay, might be, might not be, no one knows.
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Yeah the whole very well meaning question: "You're all cured now, right?" and they clearly want a happy bow to tie on the breast cancer story. But the honest answer is: well if I die from something else, then sure I was cured. But I won't know until I die from something else!
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Where is Juan?!?! I could use him right about now;)
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Sí. Juan, por favor. I did NOT know that was an option. Now it's going on the bucket list. SHHH don't tell my husband.
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I try to use "have/had breast cancer". Because I justdon't know.
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Piperkay, love your question about whether to say have, had, having, survived, etc...
I wouldn't like to say I 'have' it because that would make me feel depressed, it wouldn't feel right to say I 'had' it because as you said who knows if it's gone or not, I don't think I would say 'having' because it sounds like I just chose cancer off the menu, and I wouldn't be bold enough to say I survived, that is until I am making out with Juan at age 87!0 -
Well I have been here since March 2019 I think. After 5 surgeries counting core biopsy I still have not had final reconstruction. But what has really hit me this week is my daughter had her mammogram this week and got the call back. So more images and ultrasound November 7th. I am so wanting it not to be cancer. But so scared. She sent me a picture of the cute pen they gave her in a bag of goodies after her mammogram. I text back That doesn't have any hidden meaning does it? Little did I know she would get a call the next day. The Cancer never seems to end. My husband has had lung and prostate , I have breast cancer or maybe it's gone for now. WHO KNOWS!
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Beep7bop I'm with you on the "Cancer never seems to end." I hope all will be alright with your daughter.
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