Why was I stronger DURING treatment than I am now?
Comments
-
Janet, sometimes it feels like going through cancer treatment and the aftermath is like living on a different planet from "normal" people. Bad hair-do, indeed.
0 -
Thank you Janet...I will go Tuesday for doc to check me out and see what he says...I feel like it will be nothing!
2tabbies...a totally different planet...my sister told me that when someone says something stupid or complains about petty stuff, ask them if they would like a cup of "I don't give a sh--t"....I found it really hard to hear people complain about petty stuff...it's getting better as time goes on though. Rosie
0 -
I agree on hearing the petty stuff. Sometimes I think...who cares about any of that bs? Not that the world needs to revolve around me, thankfully it doesn't. Sometimes though, I feel angry with not only the complaining...but also with myself. Perhaps I have minimized my struggles to the point that people think I am just breezing through this & no need to check on how I am doing.Once I finished chemo in late June, it seems like people think I am done with all of the tough stuff & should just move on. Maybe they just don't want to know? or maybe I have not been real enough? I vacillate between feeling like I need to be supportive about things I could care less about & not wanting to burden others with my crap...and wanting to shout "Hey, I am still here & possibly dealing with cancer in my lung! I have a lot of fear, my MO wants me to undergo a fourth surgery this year, I just added a new heart med to the mix, my joints are killing me, I am fatigued, I am on anxiety meds because I worry incessantly"...etc. You all know the drill.
Today is a bit of a dark day for me. I know it will get better & I will be back to being positive. I am trying to drum up the desire to care about work so I can help the folks I get paid to assist.
I know I will get there & I hope you are all arriving before me.
0 -
our bc doesn't end..we are not deemed " in remission"....cancer free...maybe after 5 years NED...no evidence of disease...but the fear of mets is always there...
Just had a lump checked out on my neck...almost to the day I was diagnosed back in 2013....thankfully it was a reactive node to a sore throat and doc said all,is well...but the emotional " drain" for the week took it's toll and trying to be strong like I was totally confident all was well...NOT! I think this time , after all our treatment , is harder...we knew what to do and expect every few weeks with treatment...now we are in limbo.
Making a real effort to continue to live every day to the fullest ...spend every day laughing and not sweating the small stuff...we just never know, do we? Hang in there friends and peace to you all...Rosie
0 -
Rosie, you are absolutely right that we are now in limbo. My MO told me that with hormone positive bc like mine, there's always a chance of recurrence even decades later. And NED is just a fantasy because we're not looking for any evidence of disease - no scans, tumor marker tests, etc. So my only option is to close my eyes, cross my fingers and pray.
SmartassSmurf, I know what you mean about trying to care about work. At least it sounds like your job is worthwhile. Mine does perform a function, but the world sure wouldn't end if it didn't get done. I'm pretty burned out on it, and feel like it's time to move on. But who wants a 3 time cancer "survivor."
0 -
So hormone positive cancer is more likely to return?
0 -
Timbuktu, not exactly. The way my MO explained it, hormone negative bc is more likely to return in the first 5 years. But if it hasn't come back in that time period, it won't. It can be considered cured. Hormone positive cancer is not as likely to come back in the first 5 years, but can come back even decades later. It can never be considered cured even though the chance of it coming back goes down with time. So there are pros and cons to both types. If anything about this can truly be considered a "pro."
0 -
I hadn't heard that. My mother's breast cancer came back after 15 years.
Let's hope the drugs we have to fight this will work! I guess this is why they extended Tamoxifen to 10 years.
I'm on arrimidex and the dr still says 5 years.
Sigh, not much we can do about this.
Thanks for the info.
0 -
No, sadly, there's not much we can do. I'm on Tamoxifen for 2-3 years, then will switch to one of the AI's for a few years. Thankfully, the side effects haven't been horrible, and the worst (nasty mood swings) have been helped with other meds. I do hate taking all the pills, but what can you do.
0 -
I wish we did not have to wait so many years to see the outcomes of the various new treatments. With so many treatments in various stages of research, it is difficult to know what the outcomes will be as the 10, 15, 20 year numbers are that old since times has to pass.
Maybe the invention of time travel, ha ha.
I am happy to live in a time when Herceptin and other drugs are available for Her2+ cancer. I just wish there was a cure & not a "treatment."
0 -
Smurf, yes. A cure would be awfully nice.
0 -
0 -
Merry Christmas Hole!<?xml:namespace prefix = "o" ns = "urn:schemas-microsoft-com:office:office" />
Hi Ya'll, my favorite ladies: I hope your holidays are good ones and the New
Year brings hope and peace to our hearts.
Winter: Thanks again for that
photo of the beautiful wild flowers of the UK.
I love that the pic is tacked up on the wall right above my monitors at
work. Every time I look at them I am
reminded that there are a group of wonderful, loving and supportive women that “get
it" and truly care. Love you all and as
I must remind myself everyday….take care of yourselves and listen to what your
body and emotions tell you that you need.
For me, this season of holidays, it's to NOT accept ANY social
engagement or even answer the phone if I don't truly want to attend or talk.~ I recommend scrolling back and printing Wintersocks' flower photo on a color printer if at all possible.
**hugging all**
0 -
Purl...I was telling my husband how difficult the holidays are for many people who have suffered losses...family, dear friends, children, health...it's not a "happy" joyful time, but it may be a time of great sadness...I pray for all of us who are dealing with loss during this season of joy...glad to have each other for support...thinking of all friends who are dealing with loss...prayers and peace to you...Rosie
0 -
To all the beautiful ladies on this thread...I treasure each and every one of you for your honesty, wisdom, compassion and kindness. Thank you for making this such a safe place to come and share. Merry Christmas! I hope all of your wishes and dreams come true, and that your burdens are light.
With muchlove,
Rabbit
0 -
I hope everyone had a relaxing, and the new year brings nothing but joy.
0 -
My Dear Warrior Sister Friends,
Happy holiday's. I wish you all courage, adventure, peace, and joy. And nothing says peace and joy like my dog Jed, who is putting my old wig to good use, for this special occasion. Love and strength to you all,
Janet (& Jed)
0 -
Janet M,
I wonder how many of us are holding on to our wigs "just in case". Mine is draped over a stuffed dog. It was so expensive and, for triple negs, the first three years after diagnosis are the years the BC is most likely to form mets.
The fear of return of BC makes the topic of this thread so relevant! We are no longer naive about what treatment entails. For me chemo was nasty, hardly bearable for the first 2 months but I sailed through surgery thank goodness.
It's easy to say "don't worry about things that may never happen" but it is hard to live it. Just going to breastcancer.org is admitting we are vulnerable in this regard. I stayed off the boards for several months this year just to be able to better suppress these fears.
The flip side is that being conscious of this vulnerability makes me more likely to prioritize my day-to-day life.
May we all have a good enough 2015 and one in which cancer does not raise its ugly head!
Hugs,
Peggy
0 -
Hi everyone,
I haven't written on this board in awhile. I do check in and read the post and try to keep up. I think I felt like this fall I was finally turning a corner and then wham, I had my DIEP surgery in December to replace the bilateral implants done a year earlier and boy it really triggered a lot of the same emotions I went through the past couple of years.
I am pleased I did the surgery for the most part. My breast, small as they are, feel so, so much better now that they are my own tissue, soft and warm, even just two weeks out of surgery. But, it is a big surgery and I think in many ways harder on me than the BMX and first reconstruction. Or maybe I just can't remember that one that well anymore.
I have just felt "outside myself" again and the feeling of exhaustion is so frustrating again. I know it is normal with this surgery and I have seen pretty steady improvement since my surgery two and a half weeks ago, but I just don't want to go out and see anyone. I pretty much feel like just staying home and isolating. I think winter isn't helping that part. At least when I had the big surgery the first time it was summer and I remember sitting, or lying on our beautiful screened in porch and just watching the birds and flowers and moutains in my backyard. Winter is a bit more bleak and the cold weather makes it hard to want to be outside.
Anyway, sorry I am whining. I just know that this is a safe place, one where we support one another and I get understanding and help and that is what I need again.
So grateful we have eachother and this to help us through.
Julieho
0 -
Janet, Jed looks adorable and all ready for New Year's Eve.
Peggy, you are so right that it's easy to say don't worry about something that might not happen but hard to do. I'm not sure some of my docs get this. I don't spend all my days worrying or lose sleep over it, but it's always there waiting to pop up. Just like cancer might be. I guess all we can do is, like you said, prioritize our life based on what we now know.
Julieho, I'm sorry your recent surgery has raised uncomfortable emotions again. I also recently had reconstruction. For me, it actually helped my emotional state. I hated being flat. I was so furious with my body for doing this to me that I wanted to smash the mirror every time I looked in it. I hated having to disguise my "defect" either with uncomfortable prosthetics or scarves and other layers of clothing. It made me think about breast cancer every morning getting dressed. Even though I'm only at the beginning of my reconstruction (LD flap and TE on left, just TE on right), my mood change for the better was huge after my first fill when I could put on any shirt and look relatively normal. I wish I could say all the negative emotions are behind me. Sadly, they aren't. I still have days of depression. But I do feel better. Your surgery was pretty recent. Give yourself more time to heal. I think you're right that the time of year might be playing a part. I also think you're right that the DIEP is a more difficult surgery than the mastectomy.
0 -
Julieho! Glad to see you. I was trying to figure out how to contact you. You sent me a very detailed private message in April and I wanted to let you know that i am re-reading it and finding it very helpful.
Hope the New Year brings new health and peace and we can all enjoy life again!
0 -
BTW, I have a friend who has a daughter who suffered from depression for over 10 years. She has healed and is her old self again! Miraculous! Never give up!
0 -
Hello friends, Wow, 2 weeks post diep and I am soooooo exhausted. I am reminded in many ways of the start of all this. I thought this article was timely for some, if not most of us now, or at some point since dx.
http://www.theguardian.com/society/2014/dec/30/bre...
Wishing all my friends here a happy, hopeful, but mostly healthy New Year. x
0 -
Timbuktu - so glad to hear from you. And Wintersocks! I feel like we are old friends on these boards.
I went back and read our messages back in April Tim. How are you doing now? Reading it makes me feel like I can barely remember who I was/am. It is just so strange what losing strength and the physical and emotional trauma of surgery can do. I KNOW, KNOW, KNOW this will pass but when I am in the throws of the exhaustion and my brain feels so fuzzy and tired it feels like I have no idea how I will ever be the same.
Winter - you are one week behind me on DIEP. I can so relate to the being SOOO exhausted. When I have some strength it is short lived but so welcome. I walked two miles yesterday on my treadmill and actually felt like it was pretty easy and then wham, I was wiped out the rest of the day and night and so far today haven't even gotten out of my pj's and it is 2:30. But, I am getting dressed now to go find some new bras because this surgical bra is getting way too uncomfortable and I want to try at least something that has a different fit so I am not continually sore in all the same spots.
Thanks for posting the article. It seems like our society wants us all to be fully recovered and just continually grateful we are alive, which of course I am, but, I am also still often reeling from the turn my life took these past few years and a crazy desire to blink it all away and just wake up with my breast, my old problems and life back again.
I wish you all a good new year.
Much love,
Julieho
0 -
Julieho, you will not be the same. You will be better. Because you know more, understand more.
My husband is the same. Your message helped me.
0 -
Oh Tim, in my experience your husband will not change. Just from time to time make you think he has and then blindside you. Bi hate being negative but for me it is more just the reality of loving and living those who have those issues we discussed.
How r you doing? Are you done with all surgeries or treatments now?
0 -
Yes, Julie. Blindside is the word.
I had a horrendous year. The cancer, the surgery, the radiation, the chemo. Then, a bleeding ulcer. Then Lyme disease, which I caught early. Then an infected toe that took about 3 weeks to heal. Then Achilles tendonitis that took months and physical therapy to improve. I can walk now, I'm functional, but aches and pains all over the place.
Then I caught what seemed to be a type of flu that lasted two weeks.
Physically, my strength is coming back. So the husband has switched from hero to enemy.
I hope to get back to some kind of life. but you know how it is...blindside is the word.
0 -
winter so glad to hear from you, can you see anything yet? Do you feel any different? Stay warm x
0 -
wintersocks, thanks for posting the link to that article. It is so true. I can relate to what they said about loss of body confidence being one of the side effects women suffered from. I hadn't seen that mentioned before but it's very true for me. I don't trust my body at all anymore. Despite my taking care of it the best I could for decades (healthy diet, exercise, never smoked, etc.), it has decided to get cancer 3 times. I've got no confidence whatsoever that there won't be a fourth.
julieho, I think you're right that our society just wants us to be (or act like) we're fine and just grateful to be alive. I think it makes people uncomfortable if we aren't because it's scary for them. I am grateful to be alive, but I can't always plaster a smile on my face and ignore the fact that there are many days when my quality of life sucks because of cancer and the side effects of it's treatment. I meant to say in my earlier post that I didn't think you were whining. This is the place we can be honest and vent when we need to.
Timbuktu, good grief, you did have an awful year! As if having cancer wasn't bad enough! Wishing you and everyone a much better year in 2015.
0 -
Just wanted to pop by and wish everyone a happy new year. This marks 3 years post-chemo for me...still struggling but more accepting of my new normal. Both hubby and I have colds so new year's eve will be tea with honey and bed by 10!
0
