Starting Chemo September 2015; join us!
Comments
-
I tried vinegary stuff with no luck. Sadly most everything tastes like nothing. Today spaghettios were awesome! Tomorrow it will all be over. Lol I lost some weight the first week but gained it all back. I just blindly eat cuz I feel super hungry even though everything tastes like wrapper rather than the food it came in.
0 -
can't sleep. Not sure if it's steroid or anxiety.
0 -
Southern Charm...sorry but I can't hear those brakes! I have just as much shedding on my sink, not to mention almost a whole role of the lint roller gone, and I am sure my shower is going to plug up any moment...and I am STILL IN DENIAL!!!
(and the Giants are still in contention. Yeah right). Staying on that bus.
Love you and thanks for the smile! HUGS!!!!
Octogirl
0 -
my buzz is half skin now. Bastard hair should have had more loyalty with how much money I spent taking care of it! The next batch better know thier job!
0 -
I have also been completely open on FB. I went through and flagged some people as acquaintances and then changed my setting so that only friends, not acquaintances see the posts. But only a few people were affected by that.
I posted on FB after the biopsy while waiting to hear back. I wanted the support and all these people care about me. I have set up a caring bridge journal, which lets people follow along there while I try to go back to posting pictures of kids and less about treatment stuff. For me, I really don't care who knows. It is what it is and folks are going find out eventually.
It was cute today though. I taught my last Sunday school class of the year. My 5-year-old was talking about the medicine that will make my hair fall out. Another little girl in the class chimed in about her grandma having cancer and her hair fell out too. Her grandma also goes to our church and was telling me about when she did chemo for non-Hodgkin's lymphoma, I think. So nice reassurance for my daughter that other people go through cancer treatment and are fine.
0 -
I have also been open about bc from early on. I know it is a personal decision that everybody needs to reach themselves. I am 33 and never expected this, at least not when I have a toddler. I must have known something because I had an aflac cancer policy for a couple years but canceled it when I stopped working after my daughter was born.
I get well meaning comments but they are never helpful. Only one person outside of my dh has been real and expressed how scary it must be to go through this. I never expected how refreshing that would be. Most people speak in clichés. I guess I just wanted somebody to acknowledge the crappy situation. I don't expect cancer to magically make me a better person but I can already tell that I will be different on the other side.
For me this has been very isolating. I am so thankful for this page for so many reasons. I don't feel alone. I have no idea what I would expect without hearing others experiences and reading the prep posts. Did anybody's MO warn of these side effects and what could be done to try to prevent them?
0 -
My MO glosses over SEs. He is just singularly focused on cancer and sorta jokes everything else off in a "we will manage it" manner. The nurses on the other hand are straight to the point. I had an hour appointment a few days before the first infusion where most of the common SEs were laid out. I was also sent home with a folder about all the stuff I could expect and what to do and when to call. We've only lived here less than a year. I can't image I would have gotten this level of care in the small town we moved from in Oregon. We moved here because the school system is so much better for more autistic kids. I ended up being so thankful to God that it's turning out so much better medically too.
This group is totally awesome. Since I'm new I'm this town I don't have any close friends around I can lean on. My parents moved here in May and my mom has been a huge help, but it isn't the same as having girlfriends around. I'm not sure how I could have gotten through this emotionally without the Internet contact with my friends on FB and the help in this group. With special needs kids you're fairly isolated to begin with. Add in cancer and I'm a bit if a poriah. Lol people who aren't close to you don't really get, are afraid to ask about it or sometimes they get scared being around sick people. That's why the hair was such a big deal because now it's just "out there"
Anyway, you girls are awesome, bald heads to cramping toes, and it's making this horrible thing a little easier.
0 -
I have an appointment with the breast cancer physiotherapist for tomorrow to get fitted for a compression sleeve and other lymfedema-related stuff. So soon! Yay!
0 -
OH good tessu they'll take care of it before it gets bad. YAY!
0 -
Holding you in my heart, and hoping you can get your issues worked out, greytmph2 (((((hugs)))))
0 -
Good morning wonderful ladies
Thank you all for the birthday wishes
Busy weekend, but my hair is gone, my husband shaved his and mine last night.
Wish you all a great day!
0 -
Annie, you're hilarious. The amount of money I've spent on salon cuts and colour treatments over the years should have given me a longer run with this head of hair. Ungrateful bastard!
Planned to cut it off last night but after a big exciting and emotional (in a good way) outing all day at the Blue Jays baseball game, we were just too tired to tackle it last night. I'm ready so I guess it's just whenever it is most convenient. Everything tastes awful but I made a mug of boullion (plain chicken stock) and surprise, surprise..it tasted like it was supposed to. I've been struggling with getting enough fluids and this will definitely work for me.
0 -
Hello Girls
My hair started falling out on Friday. I was hoping to hang onto it till Thursday which is my next chemo day, but it was shedding so badly today I got it shaved off. It's actually a relief to have it gone. Tomorrow is a big day off to work, I have a nice wig for work but I have to admit I feel self conscious and the really big step is going to the gym without the wig. I have to go I love it and I think its really helping cording from surgery. Take good care of yourselves girls xxx
0 -
Hello Girls
My hair started falling out on Friday. I was hoping to hang onto it till Thursday which is my next chemo day, but it was shedding so badly today I got it shaved off. It's actually a relief to have it gone. Tomorrow is a big day off to work, I have a nice wig for work but I have to admit I feel self conscious and the really big step is going to the gym without the wig. I have to go I love it and I think its really helping cording from surgery. Take good care of yourselves girls xxx
0 -
SouthernCharm..no worries, my name really is Linda but when I signed up it was taken. So I use my hubby's pet name for me
0 -
Well, I have a lovely new SE. Red bumps all across the bridge of my nose and cheekbones. Just Awesome.
I previously had light rosacea there, so I'm thinking that the chemo is aggravating it. The rosacea used to give me 1-2 red bumps on my nose like once every few months (looks like an acne break out). This is like 100 times that. So ugly.
I went in to work this morning in what basically amounts to pancake makeup and brought it with me to touch up. I have an email in to the nurse practitioner in my MOs office who helps handle side effects. I'm thinking it might be better to go back to the dermatologist.
What's interesting about all this is that once one SE starts to subside a new one starts. Like I had the Big D and bone pain, the bone pain stopped, the D continued then lessened significantly, then the mouth sores and can't taste anything, now the mouth sores are subsiding and this pops up!
0 -
Do taste buds come back each cycle, or are they typically gone for the duration? My husband grilled a chicken late last night (he forgot he bought it, and threw it on the grill so it wouldn't go bad). I had a bite of the crispy, greasy skin, and it was the best thing I've had in a week. It tasted exactly like it was supposed to. It seems like the taste buds may be rallying?
Pity the hair won't rally. I'm getting buzzed when I would normally get my roots done, so I'm going from long, dark and curly to gray stubble. Can't decide if I'm more afraid of being bald or looking old for a few days.
I feel for those of you who are going through this in a new town. Despite my best efforts, I live just down the street from the hospital where I was born. We've lived in our neighborhood for 20 years, and are embarrassingly well supported. I am so, so grateful for the support I find here. Lint rollers? Magic mouthwash? Insight from someone who felt this yesterday instead of your ex-mother-in-law who did just fine 15 years ago? That's something most of my friends and family (thankfully) can't give me, and it makes a huge difference
0 -
Scotland the lint roller is genius. I use it sitting in from of the tv and it really relieves the poking stubble itchiness. The magic mouthwash is from heaven. I had thrush, started a sore and a sore throat. Just 1 day with mm and it was gone. My insurance didn't cover it but it was like 9 bucks so not too bad.
0 -
Infusion #2 on the way. I feel really good this morning until the nurse busted a vein in my arm. New nurse. Kinda grumpy. Hey I warned her. No one listens to us lowly patients. Decadron made my face swell up but not the agonizing stomach bloat so I'll take it! I have to pee but she scares me so I'm hesitating lol! I'm on the 3rd bag of pre chemo crap so it's moving right along. Should be done by lunch hopefully. Good luck to everyone drugging up today! Hugs!0 -
Hi all: I am reading these posts through my tears,,,really, really bad night last night as the hair started coming out in clumps and it HURT to lie on it....which made sleep almost impossible! Hair dresser is closed today anyanyway I have chemo in the big town 60 miles away so I don't really have much time to buzz it,,,,,even if I had the clippers which I dont. DAMN vanity!!!! Why have I been so stubborn about this???
Anyway I finally got a few hours sleep but my head hurts like crazy. And now I have a headache too, reading your comments makes me feel soooo much better, I don't feel so alone even if I am silly about the hair, thank you,
The lint roller does help.
And yes, my taste came back, for most things although sweet stuff is still a bit off. Just in time to lose it again in round two. Yay.
Will check in later. Thinking of you all. Special hugs to Annie also on round two, and to grey and Tessu and anyone who needs them today!,
Octogirl
0 -
Southern, we are on parallel paths. You are just 2 days ahead of me. I started chemo on 9/17.
I'm bummed you have it too.
It's really yucky! I also now have one on my chin - great. My hair has thinned a lot. I pick up my "back up wig" today. I decided to get a second one in case the one I have needs maintenance and I can't get out to get it done. I suspect that my real hair has a week or so left.
0 -
Annie! You're doing so great!
I'm so sorry about the busted vein - ugh! Have you thought about getting a port? I have very few good veins in my arms so mine has been a lifesaver for me (they even do my blood draws via the port now).
0 -
Itseems like GreatClips or SuperCuts buzzes us chemo folks for free. Might be easier than doing it yourself, and you wouldn't have to clean up.
0 -
yeah, I know...but it is part of that keeping things to myself silliness....just can't bring myself to have a stranger do it. I will leave a message for my hairdresser, who I really trust, and hope she can do it first thing tomorrow....
Octogirl
0 -
Octogirl. I'm the same way. It's either my hairdresser or my husband. It's going to be an emotional moment. Hang in there. Hugs!!
0 -
There is no silliness. Trying to do any of this on our own terms is dodgy. do this the way you want to! I'm glad I have a friend lined up to do the deed. And she will keep the hair out of my cocktail! Or coffee. Or whatever might have some sort of flavor that morning.
0 -
((((((hugs for Octogirl)))))
(((((hugs for anyone else who needs them)))))
0 -
Ok, here's my take on Facebook: I created a special Facebook group of those friends of mine I want to know about my cancer. Their support has been wonderful --- understanding comments, funny pics, also private messages sharing their own or their friends' experiences with breast cancer. I mentioned difficulty finding hats because of my unusually wide head ---- one closer friend sent me a soft chemo cap she knitted that's perfect size (I just sort of learned to knit last winter, and don't have the energy or focus to try to knit right now
--- very slow learner here). Another woman sent a soft colorful cotton scarf. Those, plus the two sleeping caps I just sewed from old t-shirts ---- I'm set, and just in time --- cold fall weather has arrived here in Finland :I apologize for not posting photos of myself here. I am estranged from a family member who has caused me extreme stress and psychological pain for most of my life. I am afraid that Google photo search would allow me to be traced. I have this person blocked on FB, refuse any emails (which thankfully have stopped), and instructed my husband and sons not to give this person any information about me or my cancer while I am still alive. So very glad they're ok with that (they don't really have contact with this person anyway). I hope everybody here understands and forgives me for this.
0 -
tessu, I totally get it....I have concerns about having photos of myself out there also, though not for the same reasons. But really the reasons don't matter and there is nothing to forgive. We are here to support each other in whatever way helps, and we don't need to know what you look like to do that! so hugs!! and thank all of you for the hugs too! They help so much!
Thinking of all of you today as I pack up everything for chemo number two. We can do this!
Octogirl
0 -
Well said Octogirl! Good luck with today.
My 2nd tx followed pretty much the same pattern as #1....just took a bit longer to bounce back energy wise. Oh and they increased my neupogen shots from 5x to 7x. Ended up with bone pain by day 5 but Tylenol took it away.
0
