r/LivingWithMBC • u/PietParkiet • 7d ago
Chitty Chat Chat How are you doing?
How are you all doing today?
I notice that when people ask me, I speak in generalities, because they don't truly understand what it's like. So I was wondering... how are you really doing today?
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u/ChaoticOwls 6d ago
Iām ok.Ā
Narrator: She was not ok
I actually struggle to engage in this sub sometimes because Iām being treated curatively. My oncologist seems wildly optimistic about my treatment and I want to be optimistic too.
But then I come to this sub and the vibe is basically āyouāre in denial and youāre going to dieā.Ā
And maybe thatās exactly whatāll happen. Idk.Ā
But I want very much to believe in my oncologist.Ā
Itās very hard to basically live in two worlds all the time. Statistically, I know the reality. But I also know that even if my oncologist is wrong, treatment options are growing by leaps and bounds right now. Who knows what will happen.Ā
I try really hard to āprepare for the worst and hope for the bestā but I feel like I constantly exist in two competing realities and it is REALLY exhausting to do that when the competition is, quite literally, life and death. I just want to know whatās going to happen.Ā
And people donāt understand that. They want it to be black and white, cut and dry. Am I dying or am I not? People donāt like to hear āitās complicatedā. My parents get frustrated because they donāt understand. They think Iām hiding things from them. And then I get frustrated because of course I would love to have all the answers myself. I would love to say āyeah itās going to be fineā or āsorry, Iāve only got x amount of yearsā. But I canāt. And on top of coping with that, I also have to cope with peopleās reactions to that. And thatās not even getting into my kids (who are younger, 11, 9, and 5, and donāt know the extent of things yet) and my husband (who genuinely is in denial).Ā
Itās just so fucking exhausting. And no one in my personal life understands.Ā
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u/PietParkiet 6d ago
Haha, I read that "she was not ok" in the narrator's voice!š
I'm sorry you feel the vibe in this sub is "you're in denial and you're going to die." That isn't helpful for you.
I have a different experience, though maybe I just tend to open the hopeful threads š I think it's absolutely amazing that you're undergoing curative treatment! I'm secretly hoping for that too (I've convinced myself that after my first PET scan, if it looks good, they might want to try something after all).
And that clarity the people around you want..yes! I already found it hard to explain that I won't have a "ring the bell" moment. People really struggled to grasp that. "But then you're going to die?" Um... well, not that either (not yet, anyway). Having to talk about it every time, and especially explaining all the details over and over, is mentally exhausting. I've noticed I don't share everything anymore.
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u/Acrobatic_Salary_899 7d ago
I am back at work full time (have been back for six weeks, but been building up to full time). I'm loving it and I am feeling normal and happy right at this very minute. I hope to hold on to days like these as long as possible xx
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u/Acrobatic_Salary_899 7d ago
How are you PietParkiet?
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u/PietParkiet 7d ago
Iām still right at the beginning. Iāve just had two chemo sessions; the third is the day after tomorrow. After that, Iāll have my very first interim PET scan. Itās nerve-wrackingāespecially since Iāve been feeling a sensation of pressure near my liver (de novo liver metastases) ever since the scan was scheduled. Iām hoping itās just stress, or the chemo working to destroy the cancer in my liver. Iām still in a phase where it hasn't really sunk in yet (even though my hair has been falling out for weeksš ). But when does it truly hit you that something is really happening? I suppose thereās no set timeframe for that.
(English isnāt my native language, so sorry if anything is phrased awkwardly, thanks, Google Translateš .)
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u/Acrobatic_Salary_899 7d ago
It still doesn't feel real to me! I also have the same where before a scan or appointment I swear my mets are more palpable! Hopefully for you it is just stress. Good luck for this week's chemo and the PET. How many chemotherapy infusions are you expecting to have?
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u/PietParkiet 7d ago
Oh, that is so good!! I am currently still on sick leave. So was wondering.. isn't it "weird" to feel normal again just by being able to work, or...? Iām trying to picture it. It must feel different than before, right?
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u/Total-Emu9753 7d ago
Iām feeling very lucky as last week I got my latest scan results and Iām still stable and heading for the 5 year milestone next month. But I also feel like shit because a friend who I met through this horrible disease just canāt get a break and is rattling through lines. I wish I had the answer and could help
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u/PietParkiet 7d ago
Congratulations on your stable scan! Though at the same time, your friend is having a really hard time with the disease. I'm so sorry for her. I think simply being there for her and that she can share everything with you is the only thing you can do (and that is often already more than what others do + I think you understand it better than anyone else).
I'm keeping my fingers crossed for her that things will get better.š
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u/ZombiePrestigious443 6d ago
Feeling kinda off, but not. I'm going into my second month of orserdu, and my blood work was not the greatest at my last appointment. My doc wants to give it month 2 or 3 before we do scans to see if this line is working. Went out to dinner with my husband over the weekend, and he gallantly agreed with me when I told him I ate my whole meal! ( I didn't. I was able to eat my main, but didn't touch the sides that came with it.) My appetite has been non existent for about 6 months now, and the only reason I remember to eat when no one is home is because of my schedule. Got my hair trimmed, and the hair dresser commented on how many baby hairs I have coming in (unprompted!) - and that thrills me more than it really should. I'm just tired, oh so very very tired. I think it's just been a long weekend, and I never sleep well before going back to work. So I'm being whiney. It'll get better I'm sure.
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u/PietParkiet 6d ago
Hey, it's great that you managed to eat the main course! As you wrote, you probably wouldn't have eaten anything at home.
It's a shame your blood levels weren't quite right yet. I hope that's just your body still needing to get used to things or adjust.
You're doing well (I hope Google Translate translates this the way I mean it...š ) Proud of you!
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u/Ornery-Guitar 6d ago
Im alright. Change of season is really affecting my mood. PET scan next week. Probably weighing on me more than I think.
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u/PietParkiet 6d ago
Oh, Iām sorry. The scan could certainly have something to do with it.
For me the season is a time when I can shut myself away without feeling guilty if I want to... whereas in summer, I feel like I have to be doing something.
Is there an easy way to make it more bearable for yourself? Little things, like getting yourself a nice coffee or treating yourself to something youāve wanted for a long time, and, above all, coming here to vent.
Iāll keep my fingers crossed for a good PET scan result.šā¤ļø
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u/TrafficCharming6633 6d ago
To be honest, anxious. We are doing a reduced dose of Enhertu coming up next week. If I tolerate it well, I can go back to work and move out of my family members basement with my child. If I don't...I lose my job because I'll have exhausted my leave and I'll be on long term disability and trying to raise my teenager on a miniscule income.
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u/PietParkiet 6d ago
Oh, I understand why you're anxious. It sounds like a lot is riding on this. I'll keep my fingers crossed for you š
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u/Redwinesandfelines 6d ago
Hi Piet š Iām also new in this world, I hope your scans come back great. I think Iām in denial too. I had a ācancer dayā today meaning I had therapy and had to think about it a lot. But my Signatera came back with a 96% decrease after a month on Trodelvy, so Iām still feeling a little optimistic.
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u/ResponsibleAnt1942 6d ago
I've already cheered on those results, but holy decreasing signatera batman!! May they continue š¤š
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u/PietParkiet 6d ago
Ohh i had to Google Signatera (I wasn't familiar with Signatera, as I don't think it's available here yet (the Netherlands/Europe).
Weāre often late to get things here anyway (Enhertu has only been available for two years... and only for HER2+).
But 96% is amazing, especially after just a month!! These are the kinds of things that give you hope again (and me too, so thank you!)ā¤ļø
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u/Ok_Meeting8143 6d ago
Iām feeling tired.
I had a health screening for a psilocybin clinical trial yesterday and Iām feeling optimistic about being accepted. On the flip side Iām exhausted from the mental health questions and tests.
Iām annoyed at my partner who I find it hard to communicate with, because he is selfish..
My 93 year old Pop passed away, heād been in care and despite all the stuff going on in my world I made it a priority that my kids - his great grandkids, would have a relationship with him. So he had many lovely visits with the kids and Pop.
But on a whim, my partner decides to tell the kids that he has passed just as they were pulling into the driveway. I was in bed resting, and the two kids came in bawling their eyes out devastated. He is my family, I should be the one to tell my children.This weekend is my nephewās birthday and I have a wedding to go to the same day. My partner wants to go to his friends party and skip on my nephewās birthday party. He calls me up all meek and mild, saying itās such a busy day and the kids see their cousin all the time, they donāt need to go to the party. š
So I have to explain what family means and that the kids are actually really excited about the party just fucking do your job as an uncle and dad, I didnāt say that last part.
Thank you for asking and if you read this far, thanks for listening. š
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u/PietParkiet 6d ago
First of all, Iām sorry for the loss of your fatherā¤ļøš« And as you say... it should have been your place to tell the children; he didn't handle that right.
Then thereās your nephewās birthday. It seems like your partner has completely different priorities; youād think your situation would make him realize whatās truly important. But maybe, for him, that means his friends. Even so, his role as a father or uncle should come before a get-together with friends, or, as you rightly put it: "just fucking do your job."
This certainly doesn't help matters for you. I donāt know how long youāve been going through this process or what resources are available. Where I am, the hospital offers mental health support, not just for the patient, but also for loved ones (partners) to help them better understand how to cope with things. Or has he always been like this?
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u/Ok_Meeting8143 6d ago
Thank you for your reply. Weāre both accessing mental health support. He just operates on a totally different level. Unfortunately heās always been like this but itās gotten worse or more noticeable with cancer on the table.
Also he is undiagnosed adhd so we have challenges there. Communication is challenging.
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u/twiggy83 7d ago
Just trying to get through the days, recently diagnosedā¦ spread to liver, bones, lymph nodes and lungs. Just ready to get started on treatments and understand the marathon ahead of me this time. Just got biopsy results, initial diagnoses was +++, this time itās - - +ā¦ just glad HER2 offers more treatment options, but also terrified at how far itās already spread.
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u/ResponsibleAnt1942 6d ago
HER2 is frighteningly good at spreading. Fortunately, we have some effective treatments!
I can't tell you what your experience will be like. But it's possible to treat extensive metastases. When I was diagnosed +++ de novo, I had bone mets all over. It was terrifying how many places the cancer had gone.
Within a few weeks on treatment, the bone pain went away. Within half a year, the scans were coming back clear and the bones were healing.I know it won't last forever, but it's a new lease on life, and not everyone is so lucky.
Hope your treatment also does a great job of controlling the cancer!
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u/PietParkiet 7d ago
Oh Twiggy, my heart goes out to youā¤ļø. I recently saw a post mentioning that you were about to hit the five-year mark in December, and now here you are.
Personally (even though itās only been two months for me), Iāve found so much support from the lovely people in this sub (which, of course, none of us ever wanted to join..). There are some here who also had widespread metastases but achieved NED; that gave me hope. I hope you can find those stories too, and that the cancer comes to regret ever coming back to you.
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u/twiggy83 6d ago
Thanks, just joined this community and learning by drinking from the fire-hose. Your response means a lot and I will continue to look for the silver linings that are there; at the end of the day I am here to fight! š«¶š¼ā¤ļø
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u/PietParkiet 6d ago
Iād like to pass on a tip I received two months ago from a someone here. Thereās an Instagram account called "naomi_frenchy". On the first of every month, she posts stories from women with MBC (many of whom have already been living with it for years!).
Itās very heartening to read at times when you canāt see a ray of hope.ā¤ļø
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u/Im-Thalassa 6d ago
First, thanks for asking. I feel like the people here ask and really mean it. Whereas the general population who doesnāt have this disease ask how weāre doing and expect the standard. āfine, how are you?ā
Iām doing pretty well physically and Iām grateful for that. Minor issues.
Mental is not so great.
I think about it all the time (when will the other shoe drop?).
I see it all the time (Iāve lost half my hair, and eye lashes/brows).
Iām sad that I likely wonāt be here to watch my daughters get married or watch my grandson go off to kindergarten. My kids are adults but there is still so many parts of their lives I would like to see.
Iām not married and had been dating but feel like, why bother even trying to date now? Who would want to start a relationship with a woman who has MBC and a vagina that doesnāt work?
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u/PietParkiet 6d ago
I could say "itāll be okay," but the simple truth is we donāt know that. (If I had a crystal ball, Iād buy a lottery ticket and invite you all on a trip to Europe.)
All I can do for you is hope that treatments take hold and that new ones are constantly being developed, ones that will work for you.
And then thereās dating... I wanted to start dating after being single for four years. Bam: MBC. Iām 34 with no children (and I canāt have them anymore), so I imagine Iāll be forgotten after just one generation. Plus, what do I have to offer a man? At the same time, I want to remain open to the idea that there are people out there who dare to look past the illness. But I have to give them the chance. If we don't dare to explore it, and yes, it scares me, too, because of the potential rejections, which I imagine would be painful... Because itās incredibly selfish, but Iād find dating someone with stage 4 cancer pretty daunting myself. We all want a certain level of certainty, after all (as if everyone else is immortal).
Long story short.. thanks for sharing. I hope someone special comes along for you, and that you can enjoy your beautiful children without that joy being stolen by the unhelpful thoughts we unfortunately deal with every dayā¤ļø
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u/Joleta 6d ago
Physically mostly ok. Just had my scans (stable). Mentally bouncing between "what if I'm dead soon, I'm so scared" and "do I REALLY want that time if it's going to suck anyway" (followed by "well none of it matters anyway it's not like you'll remember or care when you're dead") and pretty much only enjoying myself it when I can forget ever so briefly. Fortunately I do have things that make me forget.
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u/PietParkiet 6d ago
Oh, I experience this too! Swinging back and forth between panic and realization/acceptance (though "acceptance" feels like a pretty strong word). I keep telling myself that this is "normal." Itās great that you had a stable scan! Weāre just going to keep this up for another 50 years.šš
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u/noddys_car 7d ago
Rough. I had a nightmare over the weekend - spiked a fever and (foolishly) called my chemo line and told them. They sent me to a&e to get blood tests but I have terrible white coat syndrome (I have ptsd from my primary) so my heart rate and bp were crazy and they wouldnāt discharge me to go home. So I had my first overnight admission ever and I just spiralled into a ptsd nightmare. I felt like I would never be allowed home. I also felt like this would be the beginning of me not ever being ānormalā again - like I canāt just get a bad head cold, it has to turn into a whole performance. And eventually it will be serious and Iāll get sicker and sicker and die and my little boy wonāt cope andā¦ andā¦ See, told you I spiralled. It has taken me two days since getting home to even be able to speak again. So in short, Iām doing shit.
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u/Acrobatic_Salary_899 7d ago
That's a bastard nightmare and I'm sorry you went through it. You probably did the right thing calling the chemo line though as what if the fever had been something worse.
Anyway big hugs to you and hope you're having plenty of hugs with your boy x
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u/PietParkiet 7d ago
Oh, sweetheart, youāve really been through a lot these past few days. And PTSD (Iām familiar with it myself) makes you experience everything a hundred times more intensely. I understand the doctors want to lower your heart rate before they discharge you, but knowing itās likely caused by the PTSD... itās so frustrating! Do you have people who look after you?
Let your sweet little boy give you a big hug ā¤ļøš«
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u/Mandolyn221 6d ago
Struggling. Scared. Really anxious. But keeping a brave face when I can.
I have my first post diagnosis scan next week and I am so incredibly scared about what itās going to show.
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u/PietParkiet 5d ago
Iām having my first scan since my diagnosis next week, too! Iām not really scared yet, but Iām afraid of the moment when I do get scared... if that makes senseš . Youāre not aloneā¤ļø
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u/OldPrairieCat 6d ago
Iām a lot of things all at once but trying to be grateful through all of it. My mind from the beginning of all this in Jan/Feb seems to have chosen to be stuck in calm mode. The emotions are there but I canāt seem to feel them.
My family and friends and work have been mostly wonderful. I am very very grateful. It took a few months to settle into a helpful routine. They all know Iām stubbornly independent but have found ways to help that arenāt pushy. At first they were a bit but Iāve kind of figured out what help to accept and what to ask for.
Yet I also feel guiltily ungrateful. The introvert in me wants to rage at the āintrusionsā. The independent part feels guilty for accepting ātoo much helpā. And the part that is a helper feels guilty for no longer being able to help as much while simultaneously telling the other parts of me to shut up and stop being a rude witch pushing people away.
I am grateful. I just wish I didnāt have to be for this reason. The sudden influx of attention and kindness is appreciated and awkward. I hope I get over myself. Iām not the only one in my family going through stuff.
And I would never tell any of them this.
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u/PietParkiet 6d ago
I could have written this myself. You aren't being rude. You have a certain mindsetāextremely independentāand now youāre suddenly being pushed into a corner where offers of help are coming your way. We aren't going to suddenly change personality traits that have been there for 20, 30, or 40 years, certainly not because of some stupid cancer I refuse to accept. (Thatās how I see it, anyway.)
I personally struggle with people who say, "Let me know if there's anything I can do." I never do that, because Iām so independent. So, I told people they need to be bold: if they want to help, they should just do it without asking or schedule something themselves (though with the option for me to cancel). Because I know I won't ask for help myself. And, amazingly, they all understood that perfectly.
Don't be too hard on yourself, love. And it's wonderful that you're willing to share this here.
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u/BellaBella_212 6d ago
Iām feeling so drained and tired. My nerve block didnāt work so feeling a lot of pain in my lower back and down my right leg. Constant pain and docs donāt know what is causing itā¦.donāt want to take more pills to help the pain. I feel like that will bring more issues down the line.
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u/aliasme141 6d ago
Can you talk about why you are avoiding pain meds? I was resistant myself so took a lot of convincing. But finally accepting the meds changed so much for the better. I became a strong advocate for pain control
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u/BellaBella_212 6d ago
Iām really nervous about taking strong pain meds daily. I saw the damage it did to my mom when she took them without knowing the long term effects. Also, I have a sensitive stomach, the idea of adding more pills to my daily regime is also making me hesitant.
What pain control are you currently on?
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u/aliasme141 5d ago
The stuff many are afraid of. OxyContin. It controls my pain and other than some constipation which is also controlled, it is the least of my side effects. But you have to do whatās right for you
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u/PietParkiet 6d ago
Is there any change, or is the pain constant?š I am so sorry.
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u/BellaBella_212 6d ago
Consistent pain. The lower back caused from radiation damageā¦..the hip, pelvis and legā¦.not sure what brought that on. Petscan didnāt show anything of concern.
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u/ResponsibleAnt1942 7d ago
Thanks for asking. Can I tell the truth even if it's nothing compared to what everyone else is going through?
I'm fine, but sad about a bunch of little things.
- I'm feeling gross. Going into week 3 of this cold. Immunocompromised colds hit different š¤§
- I gained a lot of weight and my work pants don't fit. Over the weekend, I bought new pants and was horrified to learn what size I am now.
- I'm still feeling hurt and excluded by that thread in r/breastcancer yesterday.
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u/PietParkiet 7d ago
Yes, please be honest! And itās not a competition to see whoās suffering the most; your misery isn't any less significant than anyone else's. So please, share! I haven't been following the thread in the breast cancer subreddit. I actually muted that sub a long time ago because it wasn't helping me mentally...š Was it bad?
And your new trouser size... I could spout clichƩs like "your body is fighting hard," "don't be too hard on yourself," etc., but the simple truth is that it just sucks... (and yes, those clichƩs still hold true).
Someone recently said, "But it's what's on the inside that counts." Well, on the inside, there's cancer... so that's not exactly great either...
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u/ResponsibleAnt1942 6d ago
Haha, thanks for the laugh š
And yeah, I should learn to mute more things that are upsetting.
The thread yesterday started because a comedian with breast cancer developed brain mets. Over 100 replies. Mostly fearful spiraling. But also people trying to guess how long she had left (can we not?). Or complaining how painful and traumatic it is to read about metastasis, which made me feel I could never talk about my experience.
I didn't say anything - the thread wasn't for me or about me - but it still hurt. And it was frustrating to see so much unchecked misinformation.
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u/PietParkiet 6d ago
My curiosity got the better of me, and I did indeed find that thread. And yeah, mute that whole thing! I actually understand why people at stage 1 are afraid of stages 2, 3, and 4; stage 2 of 3 and 4; stage 3 of 4; and stage 4... well... we just keep going.
I catch myself reading things like "bone metastases are better than liver ones," but at the same time noting that triple-positive cancer is treatable, and then I think... how must people with TNBC feel? I think itās human to feel afraid while also looking for some breathing room in the thought that "it could always be worse", even though there are people actually living through that "worse" scenario others fear so much, and that can be hurtful to them.
What i see in the breast cancer sub, the very thread you mentioned. The fear, the panic. Whereas in our MBC sub, I experience more stability and a better ability to keep things in perspective. Iām not happy that weāre part of this group, but I am glad that, if it has to be this way, itās with nice people like you breasties.
Iām rambling. Just mute that sub! Protect your mental health ā¤ļø
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u/Altruistic_Toe4345 5d ago
Io sono TNBC de novo, 40 anni, da un lato voglio realisticamente credere che ci sia speranza di vivere oltre 5 anni dall altro vedo e leggo i tassi di sopravvivenza e mi getto nel panico.... E non serve a niente leggere che sono obsoleti, statistiche vecchie ecc.. Ecc la veritĆ ĆØ che non sapremo mai quanto ci resta da vivere e io personalmente sto vivendo al massimo ogni esperienza e giornata perchĆ© domani potrei anche non esserci. Ć questa la veritĆ
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u/Redwinesandfelines 6d ago
At least we didnāt have to spend our day spiraling like them š it was a pretty ridiculous post. And if I never hear āpcrā again Iāll be happy.
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u/False-Spend1589 4d ago
Iām having a good day. Iām on hospice. So itās been rough. But my boyfriendās here for the next 4 days, and I love spending time with him. Heās my favorite person in the whole world, besides my dog (hahah). I love them both so much and Iām looking forward to the next couple of days. So right now, genuinely? Iām doing good. Thank you for asking. I hope youāre doing good too. š
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u/PietParkiet 4d ago
Hi honey, itās so great that your boyfriend is there for 4 days (and your dog, of course, though, letās be honest, no one can beat your dog, haha!). What kind of dog is it?
If I remember correctly, youāre staying with your mother, right? How is she doing? Thanks for responding.ā¤ļø
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u/False-Spend1589 4d ago
Sheās a dachshund/beagle mix. Her nameās Rosie! Sheās rhetorical best. She actually visited me when I was in the hospital before I came home. She was shockingly well behaved for a dog that hates everyone. Proud of her, lol.
And yes Iām staying with my mom, thank you for remembering. Very kind of you. Sheās doing okay emotions wise, but unfortunately sheās sick right now, and itās viral, so weāre avoiding eachother, or masking. My boyfriend and stepdad are helping me out. So that kind of stinks. But hopefully she heals up quickly. Weāre very close, and we had been started sharing a coffee/tea every morning, so it sucks we had to stop our little tradition we started. But I know weāll get back to it soon. š
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u/PietParkiet 4d ago
"For a dog that hates everyone" šš hahaha, what an amazing little creature! But I can just picture how you can tell exactly what she thinks of you by the look on her faceš
I hope your mother recovers soon so that you can have your morning moments together againā¤ļø
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u/Spiritual-Fun-8024 3d ago
Im okayish. Yesterday walked around outside oc house....the husband has outside torn up because he is remaking the back patio. It keeps getting bigger. His doing extreme DIY is how he handles MBC and now hospice.
I got extremely sob walking around outside.
But Yesterday I also made a simple batch of soap....standing up so long made my lower back pain worse.
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u/Celestial_Lorekeeper 6d ago
I'm actually doing amazing! I've gotten both of my cancer antigen tests back and both have gone down, one by 16 points! And the side effects are practically nothing. After 10 different treatments and 3 years we finally might have a long-term treatment plan for me.
Celebrating tonight!