Radiation recovery
Comments
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Hey Janis and Sab, thanks for the encouragement. The LE therapy is really great, and apparently I'll be graduating soon. My BC breast had lots of tissue removed, and right after surgery it was noticably smaller. Then, it had grown to match its "twin". Now, I'm back to smaller on the BC side, which is great in my opinion.
Someone was mentioning the other day about her BC breast getting harder and tougher, Was that Joan? Anyway, whoever it was thought it was normal. I don't think it is. The hard area in my BC breast (about 1/2 of it) was actually lymphedema. The PT and I have worked hard to get that stuff moving along, and boy, this breast is now for the most part pliable and soft. Amazing. I don't have any LE in my arm, just that breast.
Speaking of which, Joan, another cold? YUCK! Take care of yourself. I think these storms are causing a certain stress level on you that your body is just plain objecting to. My body does that kind of thing all the time. Feel better soon......
Cindyl......you haven't asked for an opinion.....but have you been evaluated for Lymphedema? Truncal Lymphedema? Not the one that's easily recognized where your arm/hand swell, but where your breast swells? Seems strange to me that your surgical breast would still be that much bigger than it originally was. Presuming you were somewhat fairly evenly matched to begin with. Ignore me if I'm invading, don't mean to be! Just looking out for a sista...
And speaking of sistas.....Janis, we haven't gotten a current report on your PT for your neck. So......a report is definitely due! Is it better? Has the new pain modified or gone away yet? Can you go back to working on muscle tone or is that still too early? Do tell, as I/we worry about these things you know.
So, where the heck is Kate anyway?
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MostlySew... let me just say I have an amazing collection of underarmour shirts and shapeware of all sorts... Yeah, your diagnosis is right on the money. Got LE in my arm and basically just wrapping around the bc side of my torso. I think it is improving slowly, but improving. Between the garmets, the exercise, the mld, watching my salt intake and swearing a lot I hope to get past this.
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Hey y'all! I've been reading the latest with everyone. Joan, so glad that you have power after Sandy. I've been through a couple of hurricanes and they are no fun! Elizabeth, thank goodness that y'all were spared the worst.
MostlySew, I'm so sorry you've been dealing with LE, but I'm really glad that the therapy is helping.
SAB, those muffins sound delicious! Costco is one of my favorite shopping places, so I'll definitely look for it!
Janis, I'm so sorry to hear that you're dealing with more pain. I can relate. I will say that I have less pain with tamoxifen than with the AIs I tried. Either way, there's stiffness and soreness when I get up after sitting for a while but the aches that kept me up all night are better.
I'm still trying to find some kind of "new normal." I guess I'll get there eventually!
Good to see you gals!
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Hey Steph, good to hear from you. I'm so glad that Tamoxifen is easier on your body and that the pain is lessened. Isn't this stiffness so silly? I groan like an old lady if I've been sitting too long....oh, I remember, I AM an , well, older lady at least! I do hope your body continues to adjust positively to the meds. The way I look at it is, 1 year down, and that's a good thing!
Cindyl....I'm still giggling.....as I too think swearing helps, there are times when it's just plain needed! With a smile afterwards of course! Sorry to hear youre dealing with LE too as so many of us are. Sounds like you've got our routine down though!0 -
Steph, how nice to see your post. It had been awhile. I am really glad that you seem to be improving with the Tamifoxen....apparently you are tolerating it better. That is great news. How if life in general been treating you? i hope all is well.
Cindy I had to laugh at your post. Yes, LE causes swearing. Definitely a side effect!
. It takes time to learn to manage it but over time you can master it. Mine is well under control.Sew, I am so glad the LE therapy is working so well. I had that hardness in mine too and it too is much better.
Regarding my neck PT, it went well but insurance ran out so Thursday was my last day. I have a printout of exercies to do at home so that helps. I will really miss the electro-stim with heat, and the massages. I was always sore the day after PT but felt it helped. My neck bothers me if I am very busy or active. Yesterday I made bread from scratch....plain old white bread loaves, the only kind my DH will eat. I much prefer wheat but he won't touch it. Anyway, I make from scratch, I have never had a bread maker. I do knead the dough in my stand mixer which helps a lot. Made two big loaves and a big mess toclean up after! We ate the bread right out of the oven, it is so good fresh and warm. I gave the second loaf to our neighbors. They were thrilled. This morning however when I woke up my neck was complaining pretty loudly. My PT was great. He told me this type of surgery takes a long time to recover from. I just have to be patient.
I hope everyone is having a great weekend! Enjoy.
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Janis, have you tried whole wheat white flour? Trader Joe's carries it, very reasonable and hard to tell the difference...my DH doesn't know I use whole wheat flour
Hi Steph! Glad to hear when pain reduces. I often wonder why so little is said to us of what to expect in terms of LE and pain. Personally, I could have done without the surprises.
Sew, you are so right about not writing hardness off as scar tissue. But I have never been able to do at home what the therapist managed in her office. But insurance says NO after a point and boy oh boy are those sessions expensive. I went once out of desperation after my insurance ran out, and got stuck with a full bill of $700+ for an hour. Criminal.
OK, time to start Sunday. I've been laying in bed recovering from yesterday's hike. The first 3 miles were steep uphill (first time on these trails for us) and my body is reminding me that I am a tamoxifen-riddled 50-something.
Hugs!
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I feel those hard spots and convince myself it's the cancer back. Either LE or scar tissue is preferable. But as my original dx of scar tissue turned out to be IDC I don't take a lot of comfort... No doubt I will drive my physicians distracted over the next few years.
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SAB I have never seen the flour. I will have to look and see if the grocery stores I shop at carry it. There is no Trader Joe's near us. My DH is a fairly picky eater and does not like wheat anything. Silly man. I hate buying bread for me because I end up freezing it and it just loses its integrity after a bit. One loaf of my bread would last me a month or more. I rarely eat sandwiches but love good heary grainy wheat toast. He goes through his plain old white bread much faster. I don't touch his bread, LOL. Great job on that long hike! Now I really feel lazy. We usually walk our dogs through our subdivision and it is just short of a mile. Yesterday was really cold so we skipped the walk. DH has COPD and does not tolerate the cold well at all. I don't think it got out of the 30's.
Cindy I know those hard spots are scary. My scar tissue does feel like a lump, but my doctors assure me it is normal. I can say just over a year out of rads it is smaller and less intimidating. I can certainly understand in your case however how scary it is. Do whatever you need to do to feel comfortable. Surely your doctors understand how nerve wracking your situation is. Gentle hugs!
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Sab, for that price you could come up here (50 mi north of SF), rent a room for 4 nights and have 2 sessions with my PT, who's MPT, CLT-LANA and great. I'm just shocked at the different prices that are charged. And getting rid of the hardness and orange peel skin and swelling with out PT is impossible. I finally hit my deductible, so right now my sessions are covered. Good job on your hike, btw, I'm still aspiring to get back to my old stamina. Slowly but surely goes the turtle.......
Janis, you sound pretty chipper so that's good. Sorry the PT has run out, but I'm certain you'll be a good girl and do these exercises.....heck, you've got all the time in the world, right? just start first thing in the morning doing your MLD, then the neck exercises, then walk the dogs, then do your cardio exercises, pick up a few things around the house, do some more MLD and neck exercises and before you know it it will be dinner time! At least that's how my days go (and I don't even have to fit in neck exercises!).....0 -
Sew, You never know, I may just ask you for the phone number one of these days. I just went to a wedding in Sonoma, and stayed the night in Petaluma (Sonoma was 2 night minimum and booked due to high season) and it was truly beautiful. DH and I used to go up that way often BK (before kids.) You live in a truly beautiful spot in the world.
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Cindyl, I have a hard lump under my scar tissue too. Even my doctor feels it and looks and feels it again to make sure it's scar tissue. I just figure they're used to it. I'd definitely feel better if it wasn't there.
The stiffness is really something, MostlySew. I'm not old, but I certainly feel like an old woman when I get up after sitting for a while. I guess if it's a lack of estrogen causing me to feel old, that's good? Sometimes I wonder.
I'm still trying to build stamina too. It's definitely a process! Also trying to get back to work. I haven't been working much since all the surgeries. It's been almost a year since I worked and, mentally, going back to what I was doing before the diagnosis seems very hard. It's not something I can explain, but I wish I could just get over it already!
We had our first foster baby a few weeks ago. She was only with us a week, but we had so much fun with her!
Hope y'all have a great week!
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Steph, wow, that's great that you did go out and get involved with foster care. I recall when you decided to do that (at least I think it was you). Good for you, and I'm so glad your first case went well....it would be hard for me to give the child up, I think....
Yes, I think it's the lack of estrogen making us creak before out time. I think that will go away when we get off the AI. At least I hope so.
Sab, I'm here if you ever want the number......and you're right, I live in a great area. Oh, btw this therapist has her own business in Petaluma...had you only known....0 -
It's the great paradox. I am so tired I can hardly move, but I can't sleep, and if I sit still too long I seize up. If I can make myself get up and get moving I feel better, but it's all I can do to bend over and lace up my walking shoes. I have hot flashes, and then I freeze. I can't stand to go into the freezer section at the grocery store, and I dread trying to get through a South Dakota Winter. Everything takes turns hurting, from my toes, to my back. Sometimes it all hurts at once. My torso looks like I'm smuggling somhing, my eyes water, I've spent a ton of money on expensive clothing that is ugly and hot in the summer and cold in the winter... and yet I'm one of the lucky ones... no major complications after surgery, no chemo, healed well after rads. The other day one of my friends said something about my having "breezed through" this whole cancer thing and I was dumbfounded. I feel like I climb halfway up Mt Everest every day only to tumble back down every night and she thinks I've breezed through it? (nothing noble about my suffering either, I bitch and moan every step of the way, so I don't know what she was trying to say) blrgh and I'm probably in the wrong thread for this but what the heck.
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Oh Cindy.....I am so sorry to hear you are having such a difficult time. Feel free to vent away here, we have all done it. I think people mean well, but assume that BC treatment leaves us looking like Holocaust survivors. The fact that you probably looked good and appeared fairly normal prompted your friend to make that comment. I know someone said to me that I was 'over' the cancer. Well, of course I am over the initial surgery and rads, but I have LE and still take Arimidex for several more years. I asked my RO when we go from 'having' BC to 'had' BC. He told me not for the first five years, but realistically we can never feel completely safe or cured. Interesting. I do hope you have fewer bad days than good. I know how badly your body aches, but try to move when you feel you can. I am always worse in the mornings but feel better as I move around. I hope SD winter is kind this year. We moved to the Boise area from Wyoming, so I know about those nasty winters.
SAB, unreal about the LE therapy cost! I like Sew's idea for you to head up her direction. I haven't been to N. California for many many years, but it is breathtaking. I am originally from San Francisco but that was a few decades ago.
Steph, how nice you had a baby for a week. I honestly don't think I would be up to taking care of an infant. Good for you! I bet it was bittersweet saying goodbye. What you said about returning to work...I completely understand. I have not worked for years and here the economy is so bad jobs are nearly impossible to get. I have no formal education or training in any field. My computer skills are poor on a good day.
Never doubt ladies that you are strong, brave, and survivors!
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Steph, I am in awe of what you are doing with foster care. Bless your heart.
Cindy, it is ok to feel frustrated, and ok to vent. We've all felt that way (physically and emotionally too) and that's what makes this thread, and this board so important. How can we expect others to understand how this b#%ch of a disease keeps giving? I didn't know before I went through it and I often wonder if I was guilty of saying things like that!!!
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Hi - just checking in....yup did have some kind of cold or malaise for 3-4 days...I was so afraid it was the UTI coming back. Went today for follow up lab work and test was negative. Also finally got the "card in the mail" telling me I passed the pap test...big relief for me. Thanks for all the concern and good wishes.
Yes, it was me who said I had toughened and hardened tissue beneath my skin in the surgical area. I naturally massage it all the time. I see RO in 2 weeks so I will go over it with her.
Gotta get a few hours sleep...hope everyone is doing well.
Hugs
Joan0 -
Morning ladies,
It is only 39 here today but I can not complain. I am done with Rads!!!
First question I have to ask you is how long do I have to keep wearing cotton only t shirts? I miss my big ole sweat shirts, soft knit tops and it is getting cold here. Most of my things are cotton/poly blend and they told me to stay away from them during rads. I am still healing. My scar area and frontal skin are doing OK but my under breast area is a mess. Especially in the fold. They have me doing the aloe vera and a Vaseline pad twice a day. Very red, sore and itchy. I can not use silvadene because of my sulfa allergy.
Just wondering what worked for you all.
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For you Bunkie:
My RO did not specify fabrics, but maybe another lady here can help. I wore cotton camis though, under whatever else I wanted. Keep moisturizing and keep eating extra protein, that's what my RO told me.
I hope you heal quickly and without incident, and welcome to the other side!
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Yay bunkie. I finished in May so staying warm wasn't the problem. Getting arrested for indecent exposure was the worry. But I think if you wear cotton next to your skin you can put anything you like over it. I took the better part of a month for all the open wounds to heal.
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Thanks Cindyl,
I hear ya about getting arrested. I have worn no bra for 6 weeks and I am a 38DDD. I wear cotton t shirts with a sweat jacket over it. OyYoy!!
A month? Wow ok I can just settle in for a long ride. My crease area underneath is real itchy, red and painful. I see my RO for a skin check next Tuesday. I just don't want it to open.
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Joan, I am glad that your cold is getting better and that it did not lead to anything else. When it rains, it pours--for you, literally and figuratively. Be gentle with yourself now while you heal.
BUNKIE10, Congratulations on finishing rads!
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Bunkie, my skin was gone. So it took a while to come back. Hopefully, yours will be quicker.
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Bunkie....hurrah! You're done, done, done.....now for the healing. I'd suggest you get some Calendula cream for the red, rashy, itchy area. They sell it at Trader Joes, but its actually cheaper at Amazon. It's made by Boiron and it sure helped me thru the skin issues. Its made for burns and feels really good on the breast. continue to use creams several times a day for the next month or two, don't quit that now. And I agree with Sab, be sure to continue to eat lots of protein: 80 to 90 grams/day at least for the next month or two. Your body has been thru a hard time and now is the time to let it heal. Exercise is good too. I'm like others, I was never told what kind of material to wear. I'd say, anything that feels good would be fine. You should continue with the Dove bath soap while you heal also. Some of the other gals may have helpful,hints also.
Joan, I'm glad you don't have another UTI. Hopefully you've got that cold under control now. Is NY getting back to any semblance of normal life? What a mess that all seems to be.....
So.....anybody seen Kate?0 -
Congrats, Bunkie! I went for another month without a bra and then only wore a really soft one for a while after that. The soft one is still my favorite. I seem to have gotten over worrying about pointy nipples showing through after going so long without a bra altogether!
I love, love the Cool Nights nightgowns from Soma. They are super soft and wick moisture away. I think they would feel good after rads. (I didn't discover them until after the hyst/ooph when I started sweating 24/7, haha!) They're kind of expensive, but I can find them on clearance at the store near me.
Thanks for the well wishes for our foster care experience. I was worried about not having energy for a baby, but it wasn't a problem. Letting them go will be hard (was hard) but I just keep thinking that it's so much harder for the kids. I'm a grownup. I can take it.
Cindyl, I'm sorry that you're going through a rough time. I have to admit that I chuckled when I read your last post. You sound so much like me! I think people genuinely want us to be okay and for the experience to be behind us. It's rough though, to be still going through side effects, etc, and yet have people expect us to be like it never happened.
Hugs, y'all!
steph
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Morning ladies,
The sun is shining but it is 23 outside. Yikes!!! Looks like winter is coming. Hate it. Really need to get organized and sell this house I inherited and move someplace warm. Where do I start? It is so hard to sell a house today and I have put a lot of money into it already. It needs more. Older homes are hard to keep up. Especially for a single woman, retired and trying to get well.
Thanks for all the tips. Looks like my skin is doing ok so far all over except that awful underside.
MostlySew - Calendula creme I will check on but I have so many allergies will have to try it on the hand first. This morning I got up and put aloe vera all over the entire area and let it dry by holding it up.
It sure is beet red and sore....but I am going to give it till next week when I see the RO before I panic.Steph - Had really not thought about night clothes but with me going off HRT slowly and the rads still coming out of my body I may need something. Will look on line. My small city seems to be missing anything good. Food or clothes.
I looked in the mirror this morning and I got some color back. I was so pale with big ole circles. I would start every Monday looking better and then by Wednesday I was drained and pale. Trying to drink a lot of water. Have been looking at a juicer to try a little green juice once a day. Cut way back on sugar and sweets. Boy do I miss carrot cake and the pies I get from a special bakery here. I also need to cut back on meat but every time I do my protein goes in the toilet. I have an autoimmune disease that steals it from my body. One step at a time.
Have a good day!!!
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Bunkie, I had the same problem when I finished rads. I was told to get Domeboro solution. I got it at Walgreens. It comes in packets. You mix it up with water. I put in a container with a top so that I could use it over and over for several days. I finished in January so it was pretty cold back then. My routine was to take the solution out of the refrigerator about forty five minutes before I was going to apply it. Use a clean cloth or paper towels wring them out so they are not dripping but still good and moist and drape over your breast being sure to get at the red raw area. I se up a heater close by and draped a shawl over my shoulders. You may have to reapply so that is why I used paper towels. Just got a new one when I wanted to remoisten. I also felt this kept solution from being contaminated. Anyway it really helped and one box of twelve got me through nicely. Good luck.
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Bunkie, try some Greek yogurt. It's got double the protein of regular yogurt. If you haven't had it (I'd never heard of it before BC) it's quite good and just a bit smoother than regular yogurt.
Hi PTcruiser, haven't seen you here in awhile....hope you've been well.......
Janis....hmmmm...you haven't checked in in awhile either, and carrot cake was even mentioned....hope your neck is doing better! Saw a guy down the street riding his bicycle out his dirt road to get his mail, and he was wearing as neck collar. I thought of you! He even had a saddle bag on his bike to carry it back in. I thought Pistol might like that arrangement instead of your neck! Tehehe.) 0 -
Hi all, thanks for the good wishes. I am feeling better - slept 10 hours last nite.
Bunkie, so glad you are finished with rads. Everyone's different when it comes to healing, so just be patient. When I had itching, I got a steroid cream, but did not use it after rads. Good luck with that...and stay warm!
Things are about normal on my end of the Island. Along the shore, I am sure it is slow to no improvement. Gas is now available. I worked a full week but next week will be only 2 days. I can live with that.
No sign of Kate...I don't think she's posted anywhere. Anybody know her outside of this thread?
Janis, I hope your plans for the week go well. I can't even imagine what's cooking at your house! I know what won't be found at anyone's house soon....
Wishing a good week end to all...
Joan0 -
That is very strange about Kate...she used to check in regularly. Let's hope she has met someone special and is just too busy to post.
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I agree...strange...hope all is OK with Kate.
Quiet here....it's a busy time of year.
Enjoy the rest of the week end.0
