Summer 2015 Rads

I had my sims today, the tech asked me if my eyes were watering. Lol she told me that happens all the time. Did make me feel better. It is the first time I shed tears about having BC.

Then proceeded to runaround town doing errands. It wasn't till I got home that I realized I had sharpie all over me.

I don't really know the answer to that but I can tell you no one has told me what type of radiation I'm having either so when I met with the rad onc before my first treatment I asked him if I was having "whole breast" radiation since that was the term I kept seeing on these boards. He just looked at me like I was an idiot and said "you don't have breasts. So you're getting chest wall radiation." Oh. Right. No breasts, I guess I forgot for a minute! He did go on to explain that they are targeting the chest wall and lymph nodes higher up that weren't included in the dissection. Sorry my answer isn't very helpful, I'm sure someone on here has more info but thought I'd share my funny or not so funny interaction.

Hello Sweet Hope:

I wish you the best as you start your radiation. I finished chemo in October '14 and radiation in December '14. A piece of advice for you and all my BC sisters undergoing radiation. Please speak up when/if you become burned or are in pain. I was given samples of Aquaphor to use after each radiation treatment and told that this was the only thing I could use on my skin. About half way through the treatments. I found the burns and pain unbearable and called my doctor and insisted I was given something other than Aquaphor. They finally wrote me a Rx for RadiaPlex gel. It worked like a charm. Very aggravated that this wasn't given to me earlier, as I am sure it could have prevented much of the pain endured. I encourage everyone to speak up. Blessings to you Sweet Hope.

I had my "sim" already... but I might not actually start rads until 3 weeks after. It's partially me asking for some time because I have some friends coming into town for a week and would like to see them before I start. The radiation people (nurses scheduling and the doc) didn't seem to think it would be bad... but I haven't got a start date pinned down yet, so who knows? They may move it up a bit by maybe 4 days...

I wish I'd got the sim a bit closer to the time, since it's a bother wearing all these stupid stickers!!! Mostly the one right in the middle below my neck! (I guess I'm wearing scarves for the next long while!)

I might have been upset at the marks and tattoos if this had happened earlier... but by now I've got surgery incisions and no hair and am worried about my nails falling off and am still trying to recover from weakness in my legs from neuropathy and a constantly upset stomach and intestines... so the whole idea of tattoos is kind of no big deal any longer. Mind you... I never ever considered tattooing my body and don't even have pierced ears--or anything else! Never had any surgery before all this... never had any stitches at all! So it IS like I've been dropped into some crazy alternate reality... but I guess I'm too shell-shocked by everything else to really worry about stuff now...!

If you are through with chemo and have not lost your nails yet, have hope. You may not lose them. Mine were looking rough right after chemo, and a couple even separated about halfway down. But I just cut them short so they wouldn't catch and they are doing fine now and recovering.

I'm not sure if it has made a difference, but I have been taking a B complex vitamin with Biotin in it, and my hair is coming back fast, and I think it helps nails too. However, some may not be as comfortable with super short hair as I am. Rock the bald head or really short hair if you can. I'm loving it

After today I have 15 more rads. Hope the next 3 weeks go as fast as the first 2.

Good luck everyone!

Sweethope, my RO and my local support group friends all recommend Miaderm. It has some of the same ingredients as the radiaplex and adds calendula. All of the ingredients have been shown to be effective in Phase III prospective clinical trials. I found it at one of the local pharmacies too which was great! I've been using it 2-3x/day but so far haven't had any skin problems since I'm only one week in to treatment! It smells good and isn't greasy.

Valentine99 I am curious about your nails. Mine also lifted up from the bed about halfway down. They seem to be growing out. Underneath the nails is a buildup of what looks like dead skin. Also some of the nails are more curved from side to side whereas they used to be flatter. Did this happen to yours too? Are your nails returning to "normal"? I think mine are but I'm always curious to hear from others.

I had treatment 19 of 30 today. Starting to have more visible skin redness. RO told me today that it is normal at this point in treatment and actually didn't look too bad. I am using Miaderm twice a day and pure aloe vera gel 1-2 times in between. I've also dusted with cornstartch . No pain yet but feeling a slight burning in my underarm .

I have a question about how to put on Aquaphor. My nurse says to slather it on four times a day, on a huge area of my chest. Aquaphor is thick and takes a little pressure to smooth out. It's still quite sore and numb there after only six weeks after surgery. I hate doing it. And honestly how am I supposed to do this four times a day? I will need barrels of Aquaphor!

Also how am I supposed to wear clothes? I've been told not to wear a bra or shelf bra, so what am I supposed to wear? I settled on wearing a high-necked tank top with a bra over it, but that looks weird under my work clothes. I am on #5 today, so my skin is not changing yet. I just don't understand how this is supposed to work, and I don't have anyone to ask for help. Help!

April25, your comment really resonated with me. I am not strong; I'm a wimp, so this "journey" has been super hard. Lots of tears, let me tell you. I'm glad someone else feels the same way.

Hi everyone , it,s funny when my coworkers tell me how strong I am or my brother calls me a " badass" for getting through chemo I want to ask them what choice do I have.? I guess our friends and loved ones don,t know what to say. In some ways it's been worse than I imagined and in others easier. Losing my eyebrows really sucked. None of use likes the loses, ( breasts, hair nails eyebrows etc..) but we get on with our days and that's good enough. Never underestimate the power of a good cry. ( just not on the way to work since it washes off my brow pencil and eyeliner ). I've lost a lot but somehow it's helped me appreciate simpler things, like the return of the birds, and the flowers in my yard etc.. I'm sure I'll be whining when the radiation burns kick in, and I will appreciate all the tips for skin care. I too have the thick under nail stuff, I just thought it was left over from adriamycin when my nails were long and thick. Who knows sometimes I feel like the docs tell us so little ( and I'm a nurse, I work with these guys) everyone handles things differently we are all doing our best. Good luck to all. I'm glad you here, but wish you weren't . Linda. Ps I was told a soft bra was ok no underwire Genie bra is soft bought on line.

i can totally relate. Its amazing what we were so scared of in the beginning now seems forever ago and what we have pushed thru is truly amazing. I hear ya about what we are told. My Dr is pregnant and she thought she was going Into labor early and was saying how that couldn't happen that she wasn't ready and had so much going on. I stopped her and said that was what it was like to be told you have cancer. I didn't have room in my life for all that shit either. But what choice right? I think it took her by surprise I would say something like that . But until you walk in the shoes..... I know you guys get it

Metta and lmoore4 and live_deliciously -- I don't think I've been told anything about bras and creams yet... Will I get that when I have my first radiation session?

I'm sure most of us are having similar feelings. Maybe some variations, since people are a bit different and we're going through a lot of different phases, too. I've definitely had periods of crying. A lot of it is frustration at having so little control over anything. I'd probably cry more, but mostly I'm just so stunned by everything that I'm not even thinking all that clearly (it's like I've accidentally gotten on a crazy roller-coaster and can't get off until it stops). And I don't even want to really think about things very deeply, since it is pretty depressing.

And it's so true... We really can't do much be figure out a few things and keep on going. It's not being strong so much as just doing what we have to do (because there's no choice). But I guess that's better than not doing anything...! But it's great to have support here. I know I rely on it so much! There are just little questions and comments that doctors can't answer, and that people who aren't undergoing all this can't give, either... but that people here can just do so well! I'd have a lot harder time coping without this forum!

SweetHope -- Congrats on getting through the first third! --Hmm... so it's a different fatigue than chemo? That should be interesting (not!). People were working through Chemo, too! I totally admire those who could do that. I couldn't do a thing! Even walking around wasn't so easy most of the time...

Valentine99 -- 'Hope you stay SE free! ...I'll have to look into getting some aloe...

Metta --- Hmm... I had a Sim... but no other appts. and no x-ray (unless they were doing it as part of the sim?). They marked me up and tattooed me and stuck on stickers at the Sim...

ack. Aquaphor on the back because the rays go right through??? Yikes. Sometimes I don't want to know these details!!! -- And aren't they supposed to be shooting through at angles so that you aren't getting a bunch of radiation in non-breast parts that aren't meant to get rads? I guess they can't do this all the time (hence the problems with getting too near the lungs and heart, etc.) but...!!!

I worry about the qualifications of everyone, too. One would hope that decent organizations dealing with people's lives would be careful about who is working for them, but who knows for sure? For peace of mind, as there isn't much we can do about it, probably something to keep in mind, but not a LOT in mind.

This is all very scary on so many levels in so many ways. And nothing is a sure bet... which makes even the treatment scary. Yeah, it's supposed to kill the cancer, but is it? Or is it doing something worse? Or just bad? But there's not much we can do. We can take a chance and opt out of something if we feel strongly about it... but if we don't, I guess we just have to deal with all the doubts and uncertainties and do our best. (I guess that's just how life works, actually... but reality can be something we don't want to deal with all the time. I admit it--I am happily in denial of lots of things most of the time, and quite happy that way!)

SweetHope -- That is rather unsettling... I guess all you can do is keep an eye out for possible problems like that... Maybe question things if you see something odd... but beyond that, hopefully they know enough about what they are doing to not totally mess things up! *sigh*

No, it's not you. We have to be somewhat proactive in our treatment, so it's good to be careful. And yeah, sometimes that can seem a bit more paranoid than maybe was called for... but as they say, just because you're paranoid doesn't mean there isn't somebody out to get you! -- That is, just because things are OK in this case doesn't mean everything is being done perfectly so that you shouldn't ever be concerned. Everyone is human, so you just know there's going to be some margin of error or uncertainty... but most all of those are probably not anything dire.

When I was in the hospital during chemo (for dehydration), one of the nurses accidentally stuck a thermometer in my mouth without the plastic cover. I hated to mention it--it was in the middle of the night and dark and I'm sure things like that happen... but all night I wondered how clean they kept those things, and if I was going to catch some horrible disease, so I mentioned it to my MO when he came in and he said to tell the nurse in charge, so I did, and they called the poor person into the room (and she denied it). *sigh* Well, I don't think I've caught some horrible disease, I didn't get sick anyway, but it makes you wonder how often germs get accidentally transferred around through little mistakes... but maybe it's no big deal? I don't know...

anyway--Glad you are feeling better about the techs! It makes dealing with all this a bit easier!

Well I had my very first major meltdown today. 4 radiation treatments and I don't want to go back. ( it's not them its me). My aunt has been on my last nerve, she drives me everywhere ( legally blind and don't drive ). I tried to express to her how she has been shooting me down on everything I say. She went ballistic. Told me I don't have cancer ( true since they took it out) and radiation was just a precaution and not a big deal ( she chose not to have it with her BC ) and that she is sick of me being all mopey. ( which is not true I have worked very hard at staying positive and in the now). Ugh I am feeling so overwhelmed. I have other issues going on besides BC. I have several autoimmune disorders and am being diagnosed with second eye disease that been untreated for it looks like quite some time. Tired irritable and disconent.