Spring 2015 Radiation Sisters

mhenz--I feel like they downplay everything too. And there are sooooo many things that no one had any intentions of telling me. But I backed them into a corner and asked. My rads have affected my back, but I should clarify that it is only up high, above the range of my heart. They treated the lymph up by my clavicle and the rays go completely through for that. The burns back there are no more than the redness of a sunburn--except the three sores that won't heal, but those have not been getting worse either. I worry about my heart too. Jean is right about trusting that they know how to keep you safe as is possible. I don't trust that they are telling me everything, but I do note how careful they are in administering the treatment. They have to be. They know that our lives are in their hands. I think most of them take that part of things very seriously. I'm sorry if I have made you feel extra worry. This is a scary journey for all of us, but together we can make it through.

jean--Thanks for the uplifting words. You are a good beacon of hope and a compassionate giver. I hope that we are able to give you as much as you give us. If I could, I would give you a great big hug.

shelley--Hurray for two weeks done!

This is a quote from a leader in my church: "The One who had power to calm the elements of earth has power to calm our souls, to give us refuge from the storm: "Peace, be still." " --Robert D Hale I hope no one minds if I share that. It's part of what helped me through the week.

I get to go to my mom's today and watch a special church broadcast. There will be spiritual speakers and wonderful music. I always come away with more peace in my soul after these things. I hope everyone is getting some much needed weekend rest.

(FYI--You will all have a good laugh, but I learned that you shouldn't use tape to keep a medicated pad in place!! I learned the hard way. I thought I was the only stupid person to try this but I found a gal in another thread who made the same mistake, so I'm admitting my idiocy here in case it saves someone from the pain I'm now experiencing. I have three places where the skin was ripped off along with the tape. It's OK, laugh! I'm laughing at myself...and crying while I laugh. LOL, sniff, LOL Ouch)

Hi everyone. Next week i will be done also, four more to go. I am doing my boost and i am feeling well. The rest of my breast is starting to heal it is also my left side. I to was very worried about my heart and other major organs. The Doctor assured me that my heart was not being touched. I had thought of getting a second opinion. Being worried was taking over my life. I finally realized that yes it was my option to have a second opinion and yes i could go somewhere else but the one thing i couldn't do was heal myself. So i decided to stay where i was in the first place. Of course i had no other reason other than fear to leave that place. All my questions had been answered the staff is very attentive to the work they do. I am glad i made the decision to stay.

Mombie : that is a wonderful post. We are all in this together and slowly one by one we will cross the finish line.

to those ladies who are starting, i have found lots of information just reading these post. Get your second opinions if you feel uncomfortable with the first. Ask question here. Someone will always answer. If you feel like yelling crying etc,, its all ok to do. big hugs to all. remember there is a finish line. and always speak out.

Thank you to all the active member that take part in posting. Most of all thanks to those who have finished their treatment and still come on to give us the courage and help we need to continue. Hugs to all.

Mombie! After my lumpectomy, I did the same thing with medical tape. My drain was leaking around the point of insertion and getting on my clothes, and I used medical tape to attach some padding to that area. Big mistake! My skin is still red from where I ripped off that tape.

sybilskelton...thank you for that. I am definitely going to ask to see the images. Reassurance is not to much to ask. I realize they do this for a living but It's new to me. Mombiezombie I love that saying. Jean ...def appreciate your words.

It will be great when we all finish and can enjoy our summer. Prayers for you all

My sim is Wednesday. We're doing this prone, and I'm left side.

Is anyone else prone? (face down) I'm wondering how much breathing will affect positioning. Hard to hold still when you're moving your chest and stomach to breathe??

Also my skin, all the way to the nipple, is still extremely sensitive from the lumpectomy/SNB (one scar because they were so close). Is radiation the same kind of raw feeling or will it add a whole new layer of "omg don't touch" to this?

Mombie thanks for the beautiful poem.

I am just hanging out getting good info from you ladies while I wait the 2 weeks for my start date.

Cherice

I would like to join this thread please! Starting my 30 sessions today. I am so nervous! I feel like I can deal with the skin issues but when I read about heart pain/issues it really scares me. Mine is on my right side, not too deep pretty near the nipple. I did not have any lymph node involvement. Does everyone get the same amount of rad? I forgot to ask him this. I know I am committed to finishing this but six weeks...such a long stretch. Will I be able to keep up at least a light exercise schedule of walking, light weights etc? Is this too much to expect of myself? I tend to push too hard I'm afraid...:)

CassieCat thanks for your reply! Glad to know I can still at least walk, my dogs will be happy too! I did ask my onco about light weights, he said that is fine as long as I take it easy and listen to my body, I am pretty good about that. Hope to keep up the yoga too. I am still having some muscle tightness from the surgery, I had to have a seroma drained twice under my arm and it really played hell with my posture. Trying to get it back! Yes the not knowing is super hard and I guess that is my life long thing to learn to deal with at this point:)

Enjoy your two weeks, Cherice, and good luck with your treatment.

Candy, one piece of advice is to do the stretching and range of motion exercises daily. It will make rads more comfortable for you. The initial scan/sim and first treatments are longer, and you will probably need to be able to have your arm(s) above your head. I thought I was doing well with my ROM but found out I needed to stretch more diligently after my CT scan.

My BS gave me a pamphlet that was basically what is on this page. I also had a PT come by the week after surgery and she showed me some similar stretches.

ccbaird--Welcome. Cassie is right, everyone is effected differently. If it helps, I too am down to three days. I have been super tired, and I won't lie, pained too. But I have managed to keep up nearly all of my accustomed activities right to the last.

NY2--Welcome to you as well. Cassie is right about that stretching. Critical. Are they having you see a lymphadema therapist? This is standard at my treatment center, whether you have lymphedema or not. My therapist gave me massage and exercises that have saved me as I go through rads. She found ropes of scar tissue that I didn't know were there and massaged them out of existence. She will meet with me again after I'm done so that she can assess any further damage I may have sustained.

I'll repeat something I mentioned to another newby--Use the comments and experiences here to learn and as an avenue for questions to ask your doctor, but don't allow our personal experiences to scare you or worry you prematurely. Good luck as you begin. This is a caring, loving group. I hope you can feel our support, concern and encouragement more than anything else.

Kathy--That does seem like an overstep for that nurse to conduct business like that in the waiting room. Not good for you or anyone there. I have experienced a lot of things like that in our waiting room too--and even worse in our chemo center. I know the stool and urination habits of everyone there. Seems wrong. I hope that talk of hospice didn't make you feel personal worries. I feel truly sorry for the man.

For those of you who are wanting to keep wearing bras: I managed to successfully wear an underwire bra with no damage until last Thursday. Things have changed and I am in loose camis and dealing with a lot of broken skin. It changed over night almost. My idiot tape incident is only part of the problem now. I'm glad I made it that far though. Only three days left!!!

Mommie, you are almost done! Woohoo! How many treatments did you have before it began to get difficult? Love, Jean

Jean--I had a funny roller coaster as far as fatigue went. I've had tissue pain slowly increasing from day one--especially tumor area and my nipple. I was immediately tired after two days and the second week I started falling asleep in the waiting room! But then I saw the Naturopath. I took the vitamins he wanted and changed my Q10--this made my energy go up and up for a while. I would say around week four the fatigue caught up with me again. Week five I started needing a driver. Near the end of week five my skin started really breaking down and I've been living on hydrocodone and I can't drive anywhere. I can still do laundry and take care of family if I rest in between. Today is the first time I've been forced to take a nap. I'm just plain tired and run down. Yesterday I was airing out my skin and my arm stuck to one of the open wounds. When I moved, the whole thing ripped open again. So now it's bleeding a lot. They prescribed Silvadene. I am using antibiotic cream by day and going to do the Silvadene by night. I continue to use my homemade cream on the unbroken skin. I'm sensitive enough that I don't want to be touched AT ALL. But as scary as that sounds, I've endured worse discomfort than this. This is still manageable.

How are you doing Jean?

Janiner--Good luck as you begin. Now you can start running to the finish line.

Rekidal--I'm glad today went smoother for you. My breast has not hardened and I'm almost done. But I've heard that hardening can happen and I think I read somewhere that the hardening can still come later. So I don't know if I'm out of the woods on that yet.

Mommie, I am ok so far. Just a bit of stinging under my arm which could still be from the. lymph node surgery in February. No redness yet. I'm slathering on Aquaphor 2-3 times a day and am in my second of six weeks. Been bra less almost from the start. Wearing soft t shirts and a scarf and sweater or jacket for modesty. Last week is to be boosts. I'm still driving myself and hoping I can continue. Sybil, I too got worse when taxol was over. Bad neuropathy with pretty numb feet but no pain, thank God. Also lost brows and lashes that are now growing back and nail lifting on fingers and toes. My worst is terrible joint pain in hips and upper legs. Could be taxol related, the Femara, degenerative disease or a combination of all. Hope the neuropathy and joint pain goes away eventually. Love, Jean