I feel grateful for today living with MBC. But today I have the blues about it all! Going through wait and see regarding treatment for the liver met. Extremely overwhelmed! I have follow up with onc and regular treatment tomorrow and update on the liver tumor. So I am going to dry my tears, put in some clothes and go out for breakfast, walk about, and stay strong! X
Today is a teary 🥲 day: I feel... - SHARE Metastatic ...
Today is a teary 🥲 day
We're allowed to have a bluesy day especially on these grey days. Sounds like you have a good plan to shake it. Now dust yourself off and get out and enjoy that beautiful city you live in. Hope all goes well with onc visit tomorrow.
Manon
I seem to be at that same stage as you. I was under the impression that I had one liver met that doubled in size between CT scans. I have believed this since February. I NOW found out last week that I actually have two separate liver tumors and that each one doubled in size. I was horrified to learn that bc my onco had never corrected me when I referred to it as THE tumor.
I am angry with her bc when it was first discovered in February 2022 that it was now in my liver (it already has been in my lung and spine) and my onco did NOT change my treatment plan. I understand that sometimes if it grows in an area that it already known, that they do not change the treatment but this was a spread to a new organ.
But this was the first time in Feb. 2022 that it was found in my liver. So she kept me on the same treatment plan and then it was found that it doubled (I thought it was ONE tumor).
She then stopped my treatment of 3 1/2 years, and put me on tamoxifen and afinitor. She then had me coming in every two weeks for blood to check my levels. I was being told that my numbers were rising and from what I googled it seemed to mean the medication was not working but she kept me on it.
Now, last week, I found out it was two tumors that doubled in size and that there is a "baby" tumor there also. It appears, since it has been close to 6 to 7 weeks, that these meds may not be working from the bloodwork.
So now she moved my CT scan up early from September to now in August. She KNOWS that these meds are not working, but the only way to be 100% sure is to do a scan.
I know, in my heart, that it is going to show that the tumors are growing and may be as she calls it "treatment resistant." For the first time ever, I am scared bc what does that mean. It means, I am assuming, that there will be no more treatments.
Please stay strong. I am with you. I don’t want to wait and see with no med change. Omg! We suffer in many ways from this illness; we don’t need anyone who is not willing to fight with and for us. Can you get a second opinion?
I am going to try to. I am wondering how many oncos would really even want to see me at this late stage of this but I guess I can try. But I cannot imagine there is much to be done. I just wish I had family. Much harder when one is alone. Thank you for your kind response.
There will be another onco to see you. It only takes one
I hate the way I feel on these new meds now. There comes a point I guess where one has to wonder if staying home bc you always feel so fatigued, or feel just plain lousy with no taste buds anymore is worth it. I am home alone all day (I do not drive) and I get exhausted just trying to walk to the bus. The heat in NYC has been unbearable.
I felt normal on the verzenio and falsodex. My onco said I had a good run on it. I hate these new drugs and I can only assume, that any other trial drugs for this may have worse side effects.
It is not a quality of life for me anymore. I ordered online food, pharmacy delivers, and CVS Speciality fed exs me the afinitor. My feet are so so swollen right into my ankles.
I am sorry that the new meds are so rough...And the heat is so bad
And the isolation is so isolating.
I am glad that you are here, and that you are seeking additional connection.
Until you can get to a social worker and/or help with Hospice here are two telephone numbers that might help.
The American Cancer Society has a twenty four hour hot line that you can phone just for emotional support or informational support.
800.227.2345
And SHARE National Breast Cancer has a helpline too that is for daytime use
Toll-Free 844-ASK-SHARE (844-275-7427)
Where are you being treated?
Maimonides Medical Center in Brooklyn, NY. I was diagnosed as the Maimonides Breast Cancer center which is around the corner. Maimonides Hospital is located several blocks and two avenues away.
Maimonides (all part of Northwell) also have two physical therapy centers, a spine and injury building, in another location and a surgeons office if you need surgery to discuss with them.
So it is rather large and the only cancer center in Brooklyn that has up to the date stuff.
You have so many questions and quite rightfully so - therefore I understand your day is a "down" one. But if there is anything you can do to get your mind on something else until you see her, please try. I will pray for you to have some of these scenarios lifted off your shoulders. Blessings and stay strong!
Sometimes (not always) when I am down I take time off and ask myself how I would be compassionate to a six year old who was feeling down, and then I apply that kindness to myself. Rather than expecting too much from myself, I use my adult skills to give myself practical compassion as I would for a six year old. I bring out the coloring things, or prepare a nice walk to the backyard to pick a flower, or watch a young person's movie, or let myself take a nap, or contact someone, as you have done here. I comfort myself with kind words in my head, rather than expecting too much from myself, and I get a cozy blanket too.. The other day I walked into the backyard in the warm rain and was surprised by something I had never seen, nor expected, in our backyard.. A deer. I stood mesmerized with a six year olds sense of awe.. And when I needed a bit more help, and friends or family were not available then I have sought a councilor who deals with cancer patients. And if I just feel teary and need a cry but the tears do not come in my stubborness, then I watch a sad movie and have a good cry. Whatever works.
. For I have faced the hard stuff and have done my research and work, an I need respite and rejuvenation and self compassion. Like us here, I have done a good job of it, and deserve congratulations and time off from the concerns..
Thank you so very much for your thoughtfulness and prayers. I will take your advice.
We all have those days where we feel overwhelmed especially when you are waiting for updates from the oncologist.Stay strong you're doing great sending virtual hugs xx🤗🤗
I just replied to you on another post before reading this. You are fairly knew to this MBC malarkey. I found that to be the toughest time. There are treatments out there that should work for you. My last two didn’t work but I’m doing well on Capecitabine now (which I was not keen to start). Except of course I’ve just been thrown a curve ball. 🙄 I hope your oncologist has encouraging news, if not at least a good plan in place to move forward with new treatments. Breath deep. Sending big hugs.
Yes, it does sound like a low day. It's a good thing to have come to this community to share how you're feeling.
Exercise and fresh air will definitely help along with a little cry to release your emotions.
Tomorrow is another day. The low mood may have passed by then. If not, take the same approach.
Much love
Louise xx
Hope you are feeling better soon. We need to have the odd blue day- we are not superhuman (although some of you are close, how you power through all this!) You are a strong and positive lady, you got this.
Jackie x
You are strong! Good luck tomorrow! I'll be thinking of you
Apropos of you getting dressed, please read a quote, from somewhere---- "NOW THAT I'VE LIVED DURING A PLAGUE
I UNDERSTAND WHY MOST RENAISSANCE PAINTINGS ARE
OF CHUBBY WOMEN LYING AROUND WITH A BRA.".
Correction: --- WITHOUT A BRA.
I have teary days too especially when you face the unknown. It will be better when you have answers about your tumor and treatment
Dear hotlantaphatz, prayers are with you. Take one moment at a time and enjoy the moment. You seem to be doing that, kudos to you and God Bless.
Sending Hugs
Just roll with it warrior. That's what I do. We're all different, but mine usually passes after a day / two. 🤞Meanwhile, I'll try to send some 🌞 your way 😎.
I have days like that, too! This is a hard way to live, that's for sure. Going out for breakfast sounds great! I think it's my favorite meal to let somebody else prepare! lol Good way to start the day. Be gentle with yourself about the tears and overwhelmedness. I suspect it happends to many/most of us! Not a good way to spend all our time, but not surprising. Sending hugs and love.................
Someone on one of these boards said just remember "It's a bad day, not a bad life." That resonated with me.
Hey warrior friend, just checking in on you, howz it going?
Oh dear, I’m so sorry but you sound like me…especially when I’m close to day 21. Low blood counts and the fatigue cause the blues. Hope you start to feel better… and do let the Onc know how you are feeling emotionally…it’s part of the whole picture. Feel better,🙏
Just checking back. I hope you’re doing ok. 🙏