Radiation recovery
Comments
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Hello Ladies, I have not been writing on this thread in a while. I keep reading so I am caught up with the news.
It is good to see you getting better, Janis.
Sew, thanks for the tip about the website for bras. I am looking for something comfortable. Nothing I have is working. I feel a tightness around my bra line all the time. My bc side is now larger than the other side, it is swollen. I saw my MO last week and she said I could expect it to maybe be that way for years. WTH! I see my RO next week.
Bunkie, I just got off prednisone after 8 months. I was very shaky and weak when I was taking it, too. I had a horrible cough after rads so I ended up being on lots of inhaled steroids, too. Then I had to wean off all the meds very slowly. I am finally starting to feel better. The predisone kept me from feeling the joint pain, tho.
But because of the prednisone and the AI I am now getting another DEXA next week. The last one I had in 09 and there was already thinning in my spine and hip. It's always something.
I made it though the storm. I am in MA. We had hurricane winds and lots of storm surge. I got my power back today. I just got plowed and shoveled out at 8:30pm. Those plow guys are making lots of money. It was way too much snow for me to even think about shoveling. I managed to push the door open enough for the dog to get in and out and that was enough.
well, lovely ladies have a wonderful rest of the weekend.
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sab, I missed your post.
I would never be able to pull a Genie bra over my head. My shoulders wouldn't let me. I have heard of them and hear they work for a lot of women.
glad you didn't get into trouble in Costco.
Has anyone had the hair on their forearms get longer? maybe it was the steriods. I had to have my cheeks waxed at one point. LOL
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Hi everyone, The blizzard is over in MA and we survived. We lost electricity yesterday evening and we did not get it back for 19 hours. The house was getting seriously cold and we are in the single digits temp wise tonight. The heat is fabulous now!
Janis, your night sounded worse than mine. So sorry for your stomach woes.
I was nervous about my first post BC mammogram, but it was not bad. I found the BC breast hurt just a wee bit more than the other one.
I love the Genie bras. They are very comfortable and economical.0 -
Macatac, good to hear from you. Glad you're doing better. Great news that you have been reducing the meds you're taking. I sorry to hear that your breast is still swollen. Mine was also for a year after rads, but then I finally saw a lymphedema specialist and now this boob is the proper size and no longer hurts. Have you been evaluated? Just hoping this might be an option for you....
Elizabeth, glad you've checked in and have power tonight. That's good news indeed.0 -
I am going to have radiation and I am scared to death. Now after reading some of your posts, I am thinking twice about this. Everyone said it would be the easiest part of this stuff...and it is my left breast so I am worried about my heart. I also was a smoker (quit yesterday and working hard at this) so worried big time about the breathing issues! Talk me down off the wall, ok? I already have some bad arthritis and the AI's or Tamox are in the picture too. Ugh...not ready for this!
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(((Janis))) feel better please!
Sew, LOL... with femara and a double dose of statins daily, I miss a lot of stuff! And I read your long post and did not catch a single error...I guess sometimes we read what we want it to say
SAB I checked out genie and it's interesting. I've been wearing similar, only very light weight...this looks better.
Today I developed tenderness on my left (BC) side just where breast meets ribs. It is a large area of soreness. No clue as to the cause...I tend to switch from underwires to unconstructed pullovers...It could be the Mondor's disease of the veins or the dreaded LE. I have not heard anyone ever complain about this type of pain before. Maybe the genie would help.
Welcome back Mac.
Gotta get sleep -- I have a big day of doing very little tomorrow!0 -
April, of course you're scared to death. This whole thing is so scary, but I'm glad you've found us. You're facing lots and lots of tests, and decisions and new doctors and etc. and it's not easy, but you CAN do it. All of us have been in your shoes. I'd recommend that you take it one step at a time. Get thru your surgery, get your body healed from that and then face your radiation. Be sure to discuss all your fears with your medical teams, they will be able to reassure you about the various procedures and what to expect. Remember, what you're finding here is a great, loving place to vent. And frequently those that are having the most problems will be more vocal because they naturally need more support. You could well be like the thousands that haven't had any of these problems.
Yes, rads generally make you very tired. But it's not tired 24 hours a day, it's a different sort of tired. And yes, you may have side effects from it all, but every one of them are manageable in some way or other. And yes, I'd venture to guess that absolutely none of us would choose to have to have rads, or chemo, etc. but the reality is...we do/did have the disease and this was what we needed to do to get better. I promise, you will be able to find the strength to get thru this. The good news is that since you're DCIS they probably won't take any lymph nodes, so lymphedema isn't in your future, at least that's what I understand about DCIS. So...already there's good news for you
I'd guess in the morning, lots of the east coast gals will reassure you too, but please, climb down off the wall before you fall.....we know exactly how you feel. You're not alone in this, we're all here to cheer you on and get you thru this. Keep in touch, we will want to know how you're doing. Oh, and the good part of rads is that you get to give yourself treats....many treats, special treats....mine were decadent nut mixes, usually with fruit and chocolate, and a new orchid every several weeks....I still love those orchids and they don't remind me of an awful time at all, they remind me of the beauty in the world.
Ok, that's enough preaching for me! I do hope this helps.....0 -
Joan, you're so cute. I get that pain in the ribs occasionally. I've never figured it out. Recently I've decided it's because I forget to stretch it out, but am not really sure. Then it quietly goes away.....hope yours does too....
I'm off to bed also.....0 -
Thank you so much. It did help me. I know that I have to do this but I am still so overwhelmed by it all that sometimes I freak out a little
Thanks for your kind words. I know that I can't "opt out" of treatment as there is too much risk of the cancer returning. I also know that I am lucky that it is DCIS and very early. I am blessed that they found it when they did. Still scared to death though...
I will be in a much better place once they begin my tx's and my surgery is done. I work full time and it makes me nervous that I will be tired as my job is 100% mental and I need all of my faculties. People count on me for so much and I am scared that I won't be able to deliver for them. (I work with the unemployed and send them to trainings so lots of deadlines and help with all things employment related) I love my job and I am very worried that I will miss a deadline or not be able to help someone in need.
Ok, enough of this silliness. I know I will be fine. Just voicing my fears and so happy that people like you take the time to listen and respond. Huge hugs for any of us facing this disease. It just plain sucks on every level.
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April,
You're right! It DOES just plain suck! That said.... You know, several gals on our rads thread also worked full time, so they chose rads in the late afternoon. That way, they could just go straight home and relax. It seemed to work quite well for them. And yep, the rads will most likely make you tired, but it's the sort of thing that I just needed to sit for awhile, and then I was fine. It usually was only 10 minutes or so....at least that's what I remember now.....not completely wishful thinking I believe
And, if you end up with trouble sleeping as lots of us did, make sure you get your Dr. to give you some sleeping pills. I even had to take a few, and I have never needed them before. They definitely help though if you're one of the ones who end up lying awake as a good nights sleep is terribly important during all this.Oh, and congrats on the quiting smoking. I did that 15 years ago after smoking for 35 years, and while it's difficult, it also can be done. And believe me, eventually the cravings do go away. the key word here is eventually. Just remind yourself that it is your choice not to smoke. Oh, and take the money you would have spent and buy yourself something fun....I took up the art of bonsai with my saved money.
Let us know how you're doing......
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Macatacmv, not to beat a dead horse or anything but you can slip into the genies feet first and pull them up
April, You've probably gotten this advice already but focus on taking good care of yourself through rads. Drink lots of water, eat extra protein and moisturize constantly. Lots of us also found that light exercise helped a whole bunch in keeping up our energy level. I walked every morning before rads, between dropping off my child at school and my appointment and I believe it saved me. Many, many women get through rads with minimal problems SEs, may you be one of them!!!
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April, you will get through this. We will help you. You are in my prayers. And take meds for the nerves and other things and, if at all possible, back down on the load at work, during this time, notify your co-workers and boss that you may need to go slower, and make them part of your team. This is not a time to try to "muscle through" or do more than you can. It is a time to check in with yourself hourly, daily, and assess your energy as you go. And some people breeze right through it. And if you need help, ask for it. You deserve it.
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macatacmv - Thanks for that info. I have been on prednisone for 8 years straight to control my other disease. Mostly at lower doses of 10 or less. They told me not to try to come off during rads so I am waiting for my first mammogram next week to start. It will take me almost a year to drop down or off because of my adrenals. Did you have trouble coming off?
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Thank you all so much! I am just happy that I was able to help my poor husband dig out of the 34 inches of snow we got in this blizzard! If I had started tx's already, that would not likely have happened. I got a lot of exercise today and I feel like I got hit by a mack truck even though I walk 3-4 miles a day every day. I was lifting free weights until my biopsy on 1/25 but that whole area all the way to my shoulder has been bothering me a little ever since so I have backed off of that. But, today I lifted about 20 tons of snow so I guess it is better now
Thanks for all of the great advice. Fear of the unknown is a scary thing! I know that if I have questions/concerns, I came to the right thread.
Thank you all!
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Hello all
welcome april, not that we wish you were here, but that we are glad you joined us. It is scary to face these challenges of tx. But here you find us who have been through it and we will help you get through it too. I tried to muscle through rads and keep working, but found I had to listen to my body and slow down. And my body sure did let me know. We are all different and we react differently. So keep an open mind and we will hold your hand as you walk down this path.
sab, are those bras so stretchy that they would go over my hips? (my hips?)
bunkie, I had to come off the meds very slowly. I would do my normal dose one day and then 2.5mg less the next day for 2 weeks and then be on the lower dose for 2 weeks then the next 2 weeks I would alternate again until finally I was down to none. Yes, the adrenal is what they are worried about. I saw my dr every 2 weeks. I am just starting to get my energy back. But it was doable and my cough has almost complety gone away. I won't say I felt great most of that time, but I gave myself permission to rest and take it slow. I hated the prednisone too.
joan, hope your pain has gone away. I have pain in my ribs on the rads side. right where you said your pain is. I asked my MO about it, but she seemed to think it was "normal".
truebff, hello welcome back.
sew, I see my RO next week and will ask about the swelling again. I did have OT during and after rads, but did not expect swelling to last so long. She was the one that prescribed that, so maybe she will suggest an eval.
Got my car dug out today and took a ride around. The snow is very pretty as long as it is not in my driveway. LOL
janis, I have stomach issues also. Hope you are feeling better now. I had to do a 14 day Prilosec course a few weeks ago. It worked and the stomach demon is at bay for now.
Gotta get some sleep. Good night, ladies.
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Hi to all the NE girls who have been dealing with lots more snow than I have -- yes, I'm on Long Island but I live where the rain/snow line hovered which saved us a foot or so. Be safe....I have a snow day tomorrow and I couldn't be happier. That' why I'm still up!
This is a bit long....sorry!
April, I agree with all the pre-rads advice. I'd like to add a few specifics.
First, I see you have surgery planned for next week...it should be relatively easy. Do rest up even if you feel OK. Take the pain meds; don't get dressed right away, and sleep well. You will have to heal before you start rads. I started Arimidex while waiting for rads. I had 2 SEs that were bothersome so I stopped it during rads. But the combo of surgery, the stress of BC, and any drugs such as the AIs can already make us tired at times, and less focused. It is not to fear; it is to acknowledge and work with and plan for. (bad English, but you know what I mean?) Maybe you can have a firm backup person at work for any days you want to take.
Rads is tedious, sometimes uncomfortable (positioning) but quick.
#1 cause of tiredness: commuting to the appointments and back...arranging it around work...forgetting to eat...
#1 cause of stress for me: not able to lie still, hating confinement even for a few minutes, congestion and breathing issues lying down, and thinking about what I can't see happening. I had itching but no pain on the skin. I had a sore shoulder joint but it cleared right up.
I worked every day during rads...sometimes I took off Fridays for a 3 day week end. I also went back to work 7 days after lumpectomy. I started rads after Tgiving, and through Christmas. Then in January, when done, it did all catch up with me -- the whole experience. I had some sick time so I took it and did nothing.
My way of dealing with the treatments: I brought water, iPod, decongestants, nasal spray, eucalyptus or wintergreen oils and my phone for waiting room. I learned to overcome the fear of being alone in the room and not moving (my issue, not for others) by listening to music -- favorite rock stuff, not stuff to make me cry. I made sure I shortened the iPod cords and clipped the iPod mini to my robe so it wouldn't dangle in their way. I made up games where I'd spell thing frontwards and forwards and tap out the letters while I lay still. It worked great for me. I was not nice if they needed to do extra films...they were so nice and very professional.
I had left side rads. I was able to lie on my front and let the breast hang below the table. The rads were given below my body and just clipped my underarm area. Less heart risk that way but it's not for everyone. The final boosts were on my back and straight down on the surgery site. No control there.
I have no after effects. I used steroid cream for itching.
I healed right away and went back to work with the same minor focusing issues I had before. I look normal and rads side is still larger even after lumpectomy.
Many women do not have issues or side effects. I have lumpiness from lumpectomy and healing beneath the skin. It's always there, and changing.
Sorry to be so long....but I feel that I had a good experience. I took xanax for 3 days then decided that was not really needed. Rads is the insurance policy for lumpectomy for any cells in the breast that may have been missed by radiology.
April, I wish you the best as you prepare for your surgery and treatment. You will be cancer free very soon and that is what this is all about. You can PM to me any time.
And hi to the mid & western girls - I hope you have clear skies and wonderful days this week.
Hugs & prayers,Joan
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Joan, thanks for all of the advice. Will I need a whole week off after my lumpectomy? I was told that I could resume normal activities within 48 hours! I thought since my surgery is on a Thursday that I would take Friday off and then the weekend and be back to work on Monday? Will this be too soon? Ugh...planning this is gonna be the worst part. We are a small staff and all of us are already stretched to the limit since I work with the dislocated worker population (which contrary to popular belief is not shrinking, at least here in CT!) so I am as busy as it gets! I did take the FMLA paperwork just in case. I have about 9 days of sick time left (used a lot of it this year due to my Mom's illness and my dad's illness) but we do have a "sick bank" where people donate sick time in my agency that I could access...sigh, I used to be a "donator" and now I will be a "donatee."
I also have short-term disability which I hope I don't have to access as this is 66% of my pay and my husband is one of the unemployed right now so money is a big issue! I am more worried about this than the cancer at this point. We can't afford for me to take time off for my illness although my DH claims we have enough money to get through this since we are now using his 401K money to pay some of our bills.
I am just thankful that they caught this early. I will get through it all, I know this, but it is still very scary to me! I have good days and bad since dx and today it is a bad one. I woke up feeling sad cause today (thought it was tomorrow but had my dates wrong) is the one year anniversary of my Mom's sudden death. Ugh...feel very blue today.
Thanks again for caring about my feelings and for helping me through this very hard time. I appreciate all of you!
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april, I am really glad you found us, you will get a lot of wonderful advice and love from this bunch. Many have mentioned that rads is different for evderyone. Very true, none of us have to get the same SE's as everyone. I am pretty stubborn and made up my mind I would try my best not to let rads keep me down. I had my breast surgery on a Tuesday. My husband and I love going to garage sales, it is our Friday thing and we never miss a Friday. Prior to surgery he mentioned we would not be going that upcoming Friday. Wrong answer! I was out and about and we had a great time. I was a little sore but had pain meds so took those. We went out for breakfast, then resumed the garage sales. When I had rads, it was much the same. I did really well. Of course I got tired and when I did, I rested. It is so important to listen to your body! Also never forget that no two people are alike. One person might breeze through it while another struggles. Just pace yourself and don't push or try to be Super Woman! Your body will let you know when you have reached your limit. For me it was cleaning. I try to keep the house very clean and it drove me nuts seeing dust balls or fingerprints on the appliances. My Dh did so much during my recovery. If you have children, they need to pitch in and help with household activities. Remember you can't do it all at once. Sometimes you just have to turn your head away from the mess. I really was able to keep up with much of the cleaning. I did develop LE but went to therapy and learned how to manage that.
The best news is, this does get better, I promise. Give yourself plenty of time and don't beat yourself up if you can't do certain things. Serioulsy, do some guilt free reading or catching up on television, or talk to a special friend on the phone. That in iteslf accomplishes much...it allows you to slow down and get some much needed rest. Of course take a nap anytime you are able. Remember your body has been through a lot and deserves some much needed extra pampering! Sending you plenty of healing hugs.
Sew I have two of those same bras you described. They were a gift from Elizabeth. They are well worn and beginning to show it. They are super comfprtable though and I hope to get a couple more someday. I am busty like you sew.....so going braless is not an oprtion. Ewwwwwww.....
Healing hugs ladies, so glad you are all doing well.
Joan I am thrilled to know you are okay! Elizabeth too. The news footage is unbelieveable.
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I just wish that I could stop "jumping ahead" so much. I haven't even had my lumpectomy yet and I am already worried about radiation and AI's and their SE's! LOL...at least I know that I have a place where you don't think I am a crazy woman! I sure do feel a little crazy right about now. My brain is going 100MPH (downhill!) and I can't seem to find the brakes so I feel as though I am careening out of control and keep waiting to crash!
Thanks so much for your input. You are so patient with us "newbs" and all of our cray cray
I appreciate that so very much. This stuff just makes you nuts I guess. I wonder if anyone ever just took the diagnosis with grace and never questioned anything in their tx's and just did whatever without worrying one iota. I would love to be that way but I am a researcher and I always need to know what I am up against (or might be!) so that is a double-edged sword for sure.I have an amazing husband who already cleans and shops for me (we don't let him cook though or we would eat kielbasa sandwiches 7 days a week cause that is all he knows how to cook..lol) so I will cook a bunch of things and freeze them so we have some healthy meals. I know I will have some bad days and we can't afford take out (either financially or calorie wise) so I think that will help some.
Love to all of you and thank you!
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Hi All' and Happy Monday!
We are all dug out here in New York- only got about a foot here, so thankfully our high school band fundraiser was able to carry on. Thank goodness I was able to move those 500 meatballs out of my fridge- actually, they had to spend Friday night in my Jeep because I was out of space. Here I was worried that I wouldn't get rid of the meatballs and then found out that another woman and I had each purchased 16 lbs of sour cream for cake dough. So now I have 8 lbs of sour cream in the fridge. I think this may affect my diet slightly. Anybody got any good ideas? Is there perhaps a sour cream cocktail out there I don't know about?:)
April, I was where you are a year ago, with the mind racing to try and make sure I would still be able to do everything through treatment. I hope it will comfort you that, as Janis, there were very few things I was unable to do, even through chemo, which it thankfully looks like you will not need. I was able to drive my son to a school event three hours away 5 days after my modified radical mastectomy and only missed one school board meeting, and that was because I was on vacation:) I guess what I am trying to say is that while none of this crap is fun, it is doable. I also think it is a coping mechanism for our minds to try and plan out the future. I have finished treatment now and while I worry about recurrence, I am now planning in my head for how I will cope when my son goes to college- if in fact, one will take him!
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((hugs)) April. I know about that endlessly running mind, as I think we all do. My only recommendation is Ativan. A half of one of those works wonders for the ability to rein it all in and face it gracefully. What ever "it" is. Throughout treatments, follow-up, scares etc. I think I only took about 6 of those little white pills, but they saved me! Check with your primary care Dr. they believe in them.....
Janis, glad you stopped by. Yep, that bra is a miracle. expensive, but really helpful. And Sab, I'm with Macatac, I'm thinking any bra which will go over my hips will not hold these babies in place, eventhough I'm definitely on the Double Diva side of things! Lol. I can just see me calling my ever lovin hubby to get me out of the situation I'd no doubt find myself in if I even tried the over the hip business...
Macatac, my RO is the one who prescribed the LE review. The rest of the docs just thought it was "radiation damage" or "surgical scaring". My LE is truncal, which my PT says she's seeing more of now, but that it didn't use to be all that common. NO swelling in the arms or hands, just my poor boob. I will say though that my boob is now it's new normal size and this baby doesn't hurt any more, or feel rock hard, or have that orange peel skin (unless I bypass the gentle massage for a day). I sure hope they can do something for you. Can you tell I'm jazzed about my outcome?
Have a great day everyone.....
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Ha Cowpower, I opened the mailbox today and a huge pile of mail came tumbling out...all to my younger DD, from colleges. I guess none of them saw her report card this semester
It was so much easier with my elder DD...she's an artist and so her portfolio was the critical part of the application. Younger DD is a science/math girl so she is casting a wide net. April, NOT researching would be cray cray. We all have to advocate for ourselves and be smart about our treatment...especially in this insurance run health care system. As for activity, I am a little embarrased to tell you that I made my DH stop at the grocery store on the way home so I could pick up a couple things (I do NOT recommend this...now my friendly neighborhood grocer must think I am a disheveled drunk!) Anyway, I hope all your treatments go without a hitch!
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April,
They never tell you how much time you will really need to recover, so don't go by that. I was told after my lumpectomy that I would be fine in 2-6 weeks and I was NOT fine and didn't recover, myself, from the surgery for 13 weeks.
It makes a lot of us scared and angry when the doctors just "expect" us to just pop right up like nothing major happened to us.
Listen to and trust your body and ask for the meds that you need and that work for you.
I got a LOT of support from my gynocologist who told me that many cancer doctors really can't face the harm they put us through trying to cure us.
But whatever your circumstances are, take charge of your own recovery and needs and -if you can help it- try not to expect the best or the worst. Just know it's a process.
Hugs!!!
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Cowpower, so glad to hear your fundraiser was held. Too funny about the meatballs spending the night in the car!!!
Today we have been rained on and it is gray, icy and puddly all over. I didn't go out. I need to get valentines in the mail to grandkids.
April, to answer your question, I took a week because surgery was Tuesday and the week end was a 3 day due to Labor Day. Therefore, I took 3 sick days and long week end. Yes, you can resume normal activities - just no lifting. For the first few days, do get sleep. And avoid anyone who is sick or crowds. You don't need an infection while recovering.
Yes, there are some who just go through and do not even acknowledge what is happening...most of us have to know details. But, don't look too far down the road because you can't see anything that far off anyway!
Focus on what this week brings.
BC is NEVER convenient or considerate!
Hugs to all,
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Soooo I went to the new endocrinologist this morning. OMG...... he ordered two ultrasounds...neck and kidneys. He ordered a bunch of other tests also. Guess what he is looking at? Parathyroid problems. I am not sure who told me they suspected it but here we go with the tests. He sounds like he knows what he is doing so we will see. Liked him. I will like him more if he finds the answer for all these crazy symptoms.
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Oh Bunkie, I hope these tests lead to a solution to your slow recovery. Hugs & prayers for you...
Off to sleep since I have work in about 7 hours.
nite all!0 -
SAB my younger one is the math/ science kid- he is starting to get some mail from engineering schools. Older boy is interested in social sciences or writing. I dont know why I am so upset he will be leaving because with a major like that, he will be back living home in no time.
April, Mostlysew is entirely right. I neglected to tell you that ativan helps calm down the racing thoughts. My MO prescribed them as combination anti nausea pills/ antianxiety meds. I rarely need them now,but they help me focus in important drs appointments.
Bunkie, sounds like you may be on to something. Hopefully a simple solution.
Joan, I got into my car to go to a meeting tonight and all I could smell was garlic. I guess that is to be preferred to having the meatballs smell like gas/motor oil. I am on the school board and was a trifle uncomfortable sitting at the head table wondering if I smelled like a giant meatball!0 -
cowpower- lol
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macatacmv saw your post about Genie bras - did you try to step into them and pull them up - even if you have a big butt it works - try it.
Question: If you need 33 treatments and went to rads 7 times and 3 of those times you had to wait because the machine was not working what would you do? I am going to a very reputable treatment center but am getting quite nervous wondering if I'm getting the right aim and dosage...Also after # 6 have pain in incision and under arm toward chest area, any one else have issues like that? Kind of scared about all this radiation to begin with...
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luvbugs, I don't have a genie bra yet. Debating whether to get one or not. I guess I will try it. do they come in sizes?
Rads are scary when you think about it. And we all react differently. I had pain in my breast while getting tx. Wasn't sure if it was from surgery or rads. We just have to trust the techs. I liked it when they took their time and set me up just right. Sounds like the center is trying to make sure the machine is working right before they use it on patients. I would talk to the RO nurse about your concerns. The more they know about how you are feeling the more they can help you. Hang in there!
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