Starting Chemo September 2015; join us!
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I am definitely developing lymphedema in my operated side arm and chest wall
Scared to death about this, but glad tomorrow is Monday so I can call and ask for help before my second round of chemo on Thursday. Also, all my fingertips are getting a bit numb. I guess I'm going to be the one who gets All The Side Effects ...I estimate at least a quarter of my hair has fallen out. I'm actually hoping the rest drops out soon, because my scalp is still sore, and any movement of my hair hurts. I don't think a buzz cut would help. Luckily the tricot cap I sewed keeps the hair in place so it doesn't hurt so much (and keeps the strands off the floor and out of my dinner).
Welcome to all you new members! I hope you get as much strength and support from this group as I do!
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Tessu, I havent been diagnosed with lymphedema, but it is a constant concern for me. I stick my arm up above my heart, rotate my hand at the wrist, and also do fist pumping, make a fist and release, as many times a day as I can. Not sure if it helps, but it certainly can't hurt. I think it is to get the lymph fluid moving toward the armpit. At least that is what I've read.
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Tessu have someone run to walgreens or pharmacy or somewhere and get a compression sleeve or compression sock and cut the foot off. That'll keep it down until you see the doc.
You're correct about the buzzed hair. It still hurts buzzed.
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I've been doing PT for cording and mild lymphadema since my drains came out. The cording is mostly gone, but I have to pay attention to make sure my arm doesn't swell. It's annoying, but I'm trying to stay on top of it.
Day 6, and I'm just tired. Low grade fever for the past couple of days. Yesterday I mostly spent on the couch. Today, I went for a two mile walk. I could still fall asleep at any second. But I haven't been chained to the toilet or in pain, so I'm counting my blessings. The dog and cats are pleased, and this gray, rainy weekend has been perfect for snuggling.
We're playing musical offices at work this week, and I can't go in until the end of the week. Everyone will get one last look at my hair before it gets buzzed next weekend. Yay
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hi mamas. Just saying hi. I have been too sick to check in. My 2 year olds are regressing in behavior, clearly sensing something is wrong. Feel like the worst parent.
Tessu, I'm praying for you!
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Thanks, ladies. I had bad cording but it eased a lot during the first week after my first chemo. Sorry you are dealing with lymphedema too, but it helps me to know I'm not the only one. I'm going to call in the mornng. Cross fingers I can get an appointment this week. I have been resting the arm up on pillows a couple times a day all along, but the standard post mastectomy physical,therapy home exercises might have been too vigorous, from what I've read on the lymphedema threads in these forums. Crossing fingers it will have resolved by morning --- meaning that it is still in early reversible stage.
Good night! It's after midnight here; lost track of time watching a cool,Swedish series, The Bridge, on Netflix (luckily has English subtitles --- I can't even swear in Swedish, let alone speak it
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get some rest, Tessu! Elevate your arm while you sleep if you can.
Cajunqueen: hugs to you! Toddlers are hard enough without Mommy in chemo.
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oh my gosh Annie--I had spaghetti-os for lunch and yum. So funny!!
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Hi everyone.
I have chemo on Fridays and get the Neulasta shot on Saturdays. Looking back after my first treatment (9/17), my worst days were Sunday, Monday, Tuesday. I started feeling slightly better on Wednesday and Better still on Thursday and went to work on Friday. At this point I'm pretty much feeling back to normal with the exception of a little morning diarrhea and the inability to really taste anything (even though I started the magic mouthwash).
Today we took our son to a Fall Festival. Beautiful day, lots of walking but that was fine. We had so much fun.
I'll share that I had a really strange guilty feeling about having had such a fun, nice normal day. So many friends and family sent food and support last weekend when I was flat out from the chemo. I was about to post a couple cut shots of us today on Facebook and felt like I shouldn't. I don't want to hide that I'm feeling better, but I've been having a hard time explaining to people that I'm feeling better this weekend (people who wanted to bring meals by) and I politely declined trying to explain when help would be most needed. Anyway, I know this likely sounds dumb but when people hear you are undergoing chemo they seem to act like you're entering hospice care or something, can't understand how I could be down for a week and then feel better. I wanted to share a cute photo of our son picking his pumpkin and he and I going down a slide together, but stopped,worried that it would cause more questions. What do you guys think?
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Thanks octogirl, I did run my race today and did good
I do believe it may be my last during chemo as it took alot out of me, but I loved every minute of it!!0 -
fidget good for you for holding your head up high. Attitude helps with a buzz or patchy buzz like me. I had mine done a week ago in the middle of a busy high end salon. Yup I was buzzed in front of a crowded salon of women with hair. And I didn't cry once. My sister came with me and even videoed the whole thing. I even kept a lock of my old hair. Since then I have looked people in the eye when I'm out in my hat or scarf. I even got my wig cut sat at the same salon and took off my hat in front of everyone. I feel better about my wig now. It looks more like me(I had the stylist cut it to a picture). I even wore it after for a while. I do find I like to go bare headed in the house or naked noggin as I like to call it.
I do have phantom hair pangs and reach to smooth a lock of hair that's not there. Sigh
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Edwsmom can you make a FB post thanking all your wonderful friends for the first 10 days of help and just make an explanation about the chemo roller coaster with its good days as well as bad?
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watching TV lint rolling my buzzed head. Hair is pretty much abandoning me like rats from a sinking ship.0 -
oh and also indulged in a mani pedi today. It's my off weekend and my mo said it was ok. My salon was so great and caring with making sure everything was super sterile and clean. Now. I am totally wiped but it was so worth it. Now if I could figure out a way to imagine getting a pedi while in that chemo chair Wednesday for my 3rd it would make the crappiness of getting adriamycin go away. Ugh.
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I find I miss the hair the most when I step into the shower and the water hits my head.
edwsmom, I say go ahead and post the pics. It may be good for those who know you best to see that you are OK and are going to be OK. I know that my Grandmother was so upset when my Mom told her, and as soon as I got a handwritten note from her, I had to go see her. She told my Mom after our visit that it was exactly what she needed, and she knew it would be ok, I would be ok. I think being able to feel better, have fun and enjoy life a little bit goes a long way toward our own piece of mind too! Cherish the small victories, use the memories of the past couple of days when you enter the next round to know better times are coming.
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Well, that's the problem. I'm not posting about the cancer on FB.
My friends list has way to many old high school friends, former work colleagues, clients, etc. I just don't feel like sharing my very personal health info on there. A picture of my son, sure. I'm just not one of those people who broadcasts everything out on FB. Does that make any sense?
It's a small subset of people I was thinking of when I chose not to share my day.
Maybe I'm not making any sense.
I've also sent out emails to all my local friends and family. My good friend is also keeping that group up to date via one of those website things she set up to organize people a bit. I had lunch out with her on Friday so I know that group got an update from her after that.
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edwsmom: post those pictures. It's so hard to know how chemo is going to affect us, but most people have a general understanding that we have good days and bad days. Part of the reason your friends want to support you through this is so that you have the energy to be a mom to your son. This is hard enough without guilt.
Chevygirl54: You rock. I'm hoping to start running again soon.
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i wasn't going to post on FB but it was really hard for me to say Cancer out loud so I just posted it before surgery. The awesome thing was 2 of my girlfriends from high school immediately messaged me that they had gone through BC too. It was so much info and relief seeing people I actually knew come out the other side and be ok. I get why one wouldn't post though. I'd still post the cute kid pics and just let your joy out.
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Scotland - I elevate my left arm during sleep too and I swear it helps. I was sore last night, woke up much better.
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thanks guys. It really helped just to say that all out loud and work through it.
Maybe I'll just post the picture of my son and not the others? That might be a good compromise.
The photo is one we take every year of him picking out his pumpkin. It does bring me joy.
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Molliefish...I was at the Jays game. i wasn't sure I would make it as I had my 2nd round on Thursday but I did. Wow! What a finish!! Post season tickets are bought and I'm not missing any games.
The taste buds have totally bailed on me and everything is tasting awful again but the fatigue and nausea is in check. After 1st round, it took me to day 6 to feel somewhat normal. I wonder if I'll have a delayed reaction this time. I had my Neulasta shot yesterday and don't feel anything. I've been taking Claritin and Ranitidine (Cimetidine) day before, day of and two days following the shot. I will let you know if any side effects hit me. Interesting how we all react differently.
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Edwsmom: you are making total sense. I am not posting anything about bc on my FB page, for exactly the same types of reasons, and I told those who do know that they are absolutely NOT to put ANYTHING on social media on pain of being deleted and defriended. And, yes, I told immediate family that meant them as well! To be honest, I've been careful of posting anything on FB that might set off comments, although I do find that my (adult) kids who both live fairly far away (in the case of DS, on the other side of the country) but who worry, appreciate seeing updates showing me having fun on the good days...and I'd definitely post pics of your son that bring you joy!
I've gotten help that wasn't exactly well timed either: I've just smiled and thanked them...wishing it had come at a better time. I think a good approach with close friends and family might be just to write them a note letting them know more info about the ups and downs. Call it an 'update' and see if they get the hint, maybe? It is a tough one.
Molliefish: looks like the Jays did pretty well today! (oh yeah, I see Lindy was there too! What fun to see a finish like that. Sounds exciting. Enjoy the postseason, both of you. My Giants, I am sad to say, are out of it this year. :-( )
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getting my stuff ready for round 2 tomorrow. I'm stalling. I don't want to go
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Annie after tomorrow you will be HALF WAY !!!
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Sorry about the Giants octogirl, Yay Lindy for getting to the game. I stopped watching for a bit and got out of bed. It was on the tv down stairs but paused because my honey had hopped into be to watch with me. So then he comes down and says it's all tied up. I thought they were done for. So start the game, fast forward and I got to see the final few minutes and the walk off. It must have been awesome and loud to be there.
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I don't blame you, Annie. It's like a root canal every 2-3 weeks. I hope round 2 goes better for you!
I was too lazy not to put my cancer on FB. My girls are 12&15, so it's partially about them, too. Everyone is going to know anyway in my little world, and I get to better control the information flow. But it's a very personal choice. I haven't gone totally public at work yet. They'll figure it out in a week or so.
Taste buds. I miss them. One of the many things I apparently took for granted.
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I'm sorry edwsmom I didn't realize you weren't FBing about it. Me neither. I only have 43 FB friends but some of them don't need to know. Strawberry licorice tastes great today.
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taste buds right? Geez you'd think it would be a great weight loss opportunity but who wants to deal with that? I've just been eating stuff I can vaguely taste...ice cream, milk shakes, chocolate, spaghettios, eggs. That's a horrible diet!
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right there with you Annie. As Molliefish points out, I keep telling myself that after this one I will HALF OVER! Still would rather the weekend would not end. Monday, Monday. Yuck.
Hugs, Octogirl.
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well, Molliefish...since the Giants won today and the Dodgers lost, technically they are not done yet. I know, I know...but if they sweep the dodgers (coming in to SF tomorrow night)....You know where I will be Monday (no, not at the game. Damn chemo. But watching it on TV!). See you in the playoffs?
Annie, I have gained weight since starting chemo. I figure the time to worry about it is after I am through it. So in the meantime, eating anything that tastes halfway like food. Yes, ice cream, mashed potatoes and gravy, eggs, pasta. and anything with vinegar tastes good too. I might have to try spaghettios.
Octogirl
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