Radiation recovery
Comments
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Diane, of course I don't mind you sharing your experience and how this quote I posted relates to your life. Thanks for sharing. Unfortunately a lot of us probably have experienced toxic people in their lives.
I was pretty bummed last night.Depressed ,not sure why.About once a month I have a few hours of the blues and kind of feeling sorry for myself.Kind of ridiculous huh? My poor hubby didn't get off until like10 pm.We 'll that's enough to depress me right there.I was really worried about my ultrasound results.I knew my doctor got results but he wasn't in yesterday.I somehow thought he would come in yesterday and call me with results.The nurse said he comes in sometimes on his day off.I even gave them the number at work that rings directly to my desk.
Today we slept in until like 8:30 .But hubby decided to buy us breakfast so it was like 10:30 before we had breakfast and coffee.That throws me off.I'm used to coffee and breakfast before 8am.Grocery shopping was our big day.I always feel wiped out afterwards.I hate spending $$$ .Especially how much we bought.
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Josie - no it isn't ridiculous to have the blues now and then; you are entitled and just so you know I do too. Contracted this disease was certainly something none of us asked for and for the vast majority of us never thought we would get but we did and we are stuck with it. A counselor once told me she had never seen anyone with such control as I have; or better stated one who has to be in control of a situation. Trust me those days are long since gone. I can relate to hubby coming home late. My husband works all the time. He is an engineer with a firm that is doing extremely well - that's the good part and the bad part is he routinely works one weekend day and he is never home before 9-10 every night.
I hate grocery shopping too. Hate to cook so you can imagine how much not fun it is for me to do the shopping plus you have to drag the bags in the house, put them up and then cook something. Gag? My husband is a gourmet cook. Loves to cook and all my sisters in laws and sister are so jealous. He can make things from scratch that are out of this world. Not me direct me to the already cooked just put it in the oven aisle. I hate spending all that money too. Seems I at the store constantly.
I have to have breakfast before 8 too in fact I am a very early riser, take after my father, and I just love the mornings when I can drink coffee and read the paper by myself...its my quiet time. I don't think I could make it to 10:30 w/o hurting someone in the meantime..haha.
Praying your ultrasound turns out okay. I am sure it will but try not to worry. I know exercise in futility but give it a shot. Post when you get the results....diane
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Diane, thanks for the response.You had me laughing out loud about the coffee remark.I needed a good chuckle.Seems like we have a lot in common.
Tonight was the birthday Sunday for both my DD' s and my MIL.I made it through.It was fun I guess.Kind of chaotic but ok.Sometimes hard feeling between my sister in law and I but we behaved and were congenial to each other.She is my husband's boss.Enough said!!
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A thought for the day....
On top of that....I had a great time at my knitting convention. Good classes, fun people, and way way way to much yarn, but I tried to bring it home anyway. Have a good week everyone
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Hi ladies - I'm on the Winter Rads thread and our fearless leader Team Kim suggested I post a question here that a couple of us had. Hope you can help. My reconstruction was Sept 2011 so they had some time to settle before recurrence & the start of new treatment. I just started rads 2/13/11.
Re-asking Mcgis question - "Does anyone know how long radiation lasts in your body and how long we
could expect side effects. I know we are all different but is there a
general time? Could it cause problems with my implants months from now"I
to am hoping to make it through w/o too much damage to my implants
since my PS has already refused to re-do implants in radiated skin0 -
Hi Minustwo. I finished radiatin two weeks ago and i started to burn during my 4th week and i sm still perling now. At first it was very itchy and now perling. My breast surgeon said no reconstruction till at least 6 months after radiation skin.
I dont know about implants.
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Hi, Minus Two, and welcome. Radiation passes right through your body, so it is not the rads but their effect that hangs around. Different side effects last different amounts of time. The physical effects are normally pretty shortlived; the emotional affect (and effect) cycles back to normal-ish by six months or a year. I do not have implants, so cannot help you there. For me, the skin issues were done with in a couple of weeks. Your RO can answer all your specific questions better than any of us. And, oh, yes, you might want to interview another PS, one who is more comfortable with radiated skin.
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josie - Definitely enough said...your husband's boss..yikes! We have a large family on both sides but its only on my side that parties end up being chaotic. We are all outspoken, opinionated, argumentative and competitive but on the plus side we do have great senses of humor. Husband's family is quiet like him(what else would he be living with me...I have no OFF button) and while that is nice sometimes I would rather have the noise...I can relate to the sister in law issue too; not overly fond of any of my 5 sisters in law but you already know you have to play nice to keep the peace in the family. Tough sell sometimes.
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Minus two, welcome I'm sorry your going through this twice.I have no experience in implants but I can tell you Rads is a cumulative thing.As you get further into it is when most of the side effects start getting a little worse.And Most of us can attest to having at least 2-3 months of lingering effects.I thought I heard somewhere that up to six months .Drink plenty of water and eat plenty of protein.Rest when you can.Give yourself a break but try to stay a little active each day.Moisture even a couple months out of Rads.
Sew I'm glad your day was good.I wish you could teach me to knit or crochet.I try but all I can do is a little chain.
Diane, sounds like you do have a large family.I could tell some stories.My sister in law gave my daughter a card saying something like what a freak show our family is but that's ok because she loves freak shows.Yes that's how sweet she is.My mother in law and I were offended she thought it was funny.She and her daughter like to embarrass my daughter's boyfriend by asking him what he's going to do with his life since he didn't graduate high school.
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Thanks ladies for the tips & good thoughts. The BS was able to do the new ALND surgery w/o getting into the implant pocket. My RO is pretty sure there will be fibrosis & scar tissue & the Right implant will be "pulled up". She's hoping to avoid capsular contracture but no guarantees. We did agree on only 25 rounds w/no boosts and only 50 gry. As for the PS - he's the head of plastic surgery at a major medical center hospital. He's not a people person but an excellent PS. I have absolutely no visible scars from the double mastectomy w/TEs & then reconstruction both in 2011. Best case will probably be a revision to the left side to match any changes in the right. I don't want to borrow trouble, but I do understand his concern based on his experience & my particular skin. I know there are docs who will go ahead, but I've read about lots of problems w/implants and thin radiated skin. I don't have enough fat for a Diep and sure don't want a LAT Flap at this point in my life. Keep your fingers crossed.
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Hi Minus Two- I laughed about your PS- Its true that in many exceptional surgeons a good bedside manner and surgical technique seem mutually exclusive- I think he is trying to tell you that he can not offer you what he would consider a cosmetically acceptable result or something like that- just straight out ask him
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Thanks wyo. I was trying to be polite & not call names since this is a new thread for me. He didn't want to see me after this last surgery & probably not until my regular yearly check in September (I'm in his research study for Allergan 410s).
Right now I'm just hoping rads won't do too much damage. Doing lots of stretching every day.
Laughing about surgeon's attitudes - my BS gave me her personal email that goes to her cell and said to 'call' anytime. Hmmm. I wonder... BS is a 'she'. Same deal with my RO. She said she'd prefer I email her directly w/any questions so she's sure to get the message.
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Interesting how the female docs I have absolutely are more "high touch" than "high tech" but plastic surgeons are perfectionists- honestly the one I consulted with showed me enough pictures and info that I changed my mind about BMX- told me I could not have flap (like I would- ouch I work in surgery) I am 52 and dear hubby reminded me he is not a "boob man" thank god- it must be my sparkling personality heheheh
That PS and his PA were very very up on the gummies- said they were having great results with them, more natural, less pain even with breasts after radiation. Did you have the kind where the expander becomes the perm implant? I loved that idea just pull the fill port and its your implant no exchange needed.
I am coming up on 3mos out on RADs though no implants Canadian protocol of 16 TX and it looks like you might be getting the "full monte" if I read you info correctly. I did a lot of gentle yoga- it made all the difference, I still do (less gentle) and if I don't things start to "tighten up" quickly.
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Well, I called my OBGYN today for results.The nurse said they're on his desk but he hasn't interpreted them yet and of course he's in surgery this morning.She promised I would hear from her or the doc sometime this afternoon.
FRUSTRATED!!! Time for some stress cleaning.This living room is going to be clean and clutter free by the end of the day.
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Personally, Josie. I always seem to opt for stress eating. I'm so impressed with your choice! Well, at least you know the results are in.Somehow, I'd assumed your mother-in-law was your husband's boss, but it's his sister, huh? Is it like sibling rivalry all grown up? Blah!
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Hi ladies,
Just checking in to see if anyone has seen any SUNSHINE and warm weather so I can bask in your good luck. We had a lovely weekend here in CT with 50 degree weather and now back in the teens at night...ugh! Snow tomorrow they say so hopefully it is only a dusting to an inch. So tired of this!
Sew, love that post above!
Minus Two, I had a one week 2 x a day rads program so I can't really help with what "regular" rads feels like, but my exhaustion lasted a good three months. I am still tired, but I think now it is from the aromasin. Ugh!
Kate, hang in there honey. I hope that soon you will be strolling the red carpet with your nice normally thin legs peeking out of a lovely gown. I know that you are a true warrior princess and you are coping magnificently! I am so proud of you. I would be a hot whiney mess myself..lol Be well chica!
You too Josie. I agree with Brookside, stress cleaning? I stress eat as well....lol
Ok, gotta run. Hope all the rest of you are well. Hope Your hubby is doing well Cindy. Shout out to all of you wonderful ladies. Take care and enjoy the day!
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Just lost my previous post since my kindle died.Now it's plugged in so here goes again.....
Brookside, and April, yes I know most people stress eat but I usually don't feel like eating when stressed.
But I did work up an appetite and made myself a big salad with croutons, bacon bits ,feta cheese,carrot,romaine and iceberg lettuce and a little italian dressing.Oh and a grilled turkey and cheese sandwich with a few potato chips.
Now to get back to work in the living room.
I'll let you know as soon as I know.
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Diane, I hate cooking too, and I am jealous of your large family. I wish I could win the lottery and have a chef prepare a gazillion ways to have lobster with spice.
Minus 2 Welcome Sorry that I am such a mess that I can't help right now
Josie, feeling sorry for yourself once in a while is fine. I do it too, but when the crying is over i say venting is good, but let me put that energy to use somewhere else. Whatever person etc. is bothering me I say to myself I'll show you, and then think of positive ways to help myself. I am so glad you got to enjoy the birthday Sunday. Now as for waiting for results for the ultrasound this SUCKS. Waiting is awful, but I am sure everything will be fine, and I am sending prayers and positive vibes your way
April thanks so much for your support. I so wish you could hop on a plane and come here to Santa Monica to enjoy my beautiful sunny 65 degree day with me. I hope you never have to deal with any stressful medical issues, but God For Bid if you did you would find strength
I've had a rough couple of days. Unfortunately I am back on Oxycodone. If I am in too much pain I can't fun ction at all, so Oxy helps me function a little. I am still having painful cramps, and my right leg hurts so much, especially my thigh. I've had two mini emergencies. One night I couldn't urinate, and last night the swelling in my leg was so bad I thought I would have to go to the E R again. The night of the urination crisis I spoke to two urologists on the phone, and they helped me pee a tiny bit, and they said I was safe for the night and didn't need to go to the hospital. Last night I just hurried up and got off of my feet, and elevated to the moon, and I got through the night. It is my thigh that is the hardest, and most filled with water. it is difficult to elevate a thigh. Any ideas Brookside or anyone else who might know. My lymph massagist is coming here around 5, and I have a list of questions for her, and will ask about that too.
I suppose I needed to go to a skilled nuirsing home or some kind of rehab place instead of coming home, but that would depress me and scare me. Leaving here for 2 weeks or more seems like the beginning of the end. So, I will do everything I can to remain here. I have not been outside since I came home last Wednesday. Tomorrow I am going to try going with a friend to the bank and CVS. Then Friday is my appointment with my medical oncologist
I
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Joan - I did the same thing you did. Wrote a long one and it vanished. Ugh. Too tired to write it all again so I will pop in with short ones. Unfortunately I am already on steroids and have been for 6 long years at a maintance dose. I attempted to come off several times but had too many issues. They kept blaming the autoimmune disease when really it was the adrenals causing the mess. So I am in a catch 22. Need to get off because they are no longer needed to control my disease but have to stay because my adrenals have died. Looking for a happy medium.
Kate - I certainly hope that massage is working. It sounds wonderful. You will be up and running soon. I can feel it. Send me some sunshine please. The polar vortex is coming back for 2 weeks and it is brutal.
Josie - That job and those people are toxic. Hope you can get another job soon. I know what that feels like. No fun. I have to catch up on the details but I am sure they are not improving.
I have been really battling the fatigue and vertigo now for the last two weeks. Will check in soon again.
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Kate, it's wonderful to read your nice, long post, but so sorry you are having such a time! I know you want to be home, but do please consider a week or so in rehab. Here's why--In our local, lovely hospital, patients have physical therapy twice daily, and occupational therapy once/day. Now, I don't know if such a schedule is appropriate for you, but maybe at least the lymphedema therapist should be seeing you daily. I'm a little confused, also, as you've referred to your therapist as a massagist. I'm hoping you have a physical therapist who, on top of all her other credentials, is also a certified lymphedema therapist. This is what some of us have used, and rave about, for our post-surgical swellings and so forth.
The other thing about a rehab is there would be staff around who could let you know when to worry and when not. And, of course there are those beds that elevate your legs without your having to prop pillows and towels and stuffed animals and so forth on the end of the couch. Yes, you are brave, independent, intrepid, and glamorous, but if your docs think you'll heal faster in a rehab, maybe you should consider it?
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April - Just read your post about lack of sunshine.We have had 2 days this Feb when I have seen sun. It was so bright it hurt my eyes. They say the polar vortex is coming back tomorrow....for 2 weeks.I just do not know how pwople can handle iceland and places all cold and dark.This really depresses me and makes me have cabin fever. I think if we just had some sun it would help but nooooo....not this winter. It has made me appreciate the past milder winters we had with very little snow and temps at 30 most days.
Ladies I have a question about exercise. Weight lifting was mentioned as a help for my BC arm to gain some strength. I know we are supposed to be careful with that arm on that side. Can we lift weights at all? I know last time they tried to take my BP on that side I went nuts. Do I need to be that concerned?
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Kate, I'm sorry you have had a rough couple of days.That is scarey not being able to urinate,I hope this improves quickly.Maybe the therapist can give you some ideas or ways to improve the swelling.
BUNKIE, I know it's been a long winter for us all.I hope you can get outside soon.We are getting the cold back and some snow too before the end of the week.
Thanks for thinking of me .The managers have left me alone and this is just fine with me.We lost a receptionist and I was thinking of asking if I could do that on Tuesday and Thursday but they already had her replaced by Monday.Maybe that's a blessing in disguise.I haven't looked too hard lately since I'm kind of waiting to see the results of this ultrasound.Not that I'm anticipating bad results but you kind of prepare yourself for that just in case .
My nurse called me about 30 min ago and said the Dr had to leave for an emergency again and she doesn't think he's had time to review results.I am so frustrated.I also understand but do expect a phone call by this evening.
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Josie I can't believe you've had to wait for your ultrasound results like this!!!! No good at all!!! Sure hope it's all good AND I hope you find out soon, as in NOW.
Kate, it was good to hear how you're doing, except I was sorry to hear you are not doing so well. I do understand why you would hesitate to go to a rehab place, though I also agree with Brookside that it could be a good thing under the right circumstances. I hope your lymph massagist can do what you need her to do and you can feel better fast.
Bunkie, I think we not only can lift weights, but in addition we should lift weights. Just carefully, start small and build up slowly. That's part of why I'm going to an LE PT next week. Brookside, thanks for saying, a little while back, that you are more careful of your arm because of my recent discomfort. I was doing better, but last night I noticed some cording and today that is worse. It's sore, and I can see it when I raise my arm. I may call the PT at the hospital again tomorrow.
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RunFree, yes isn't that ridiculous? This was Thursday I had the ultrasound and the tech assured me he would have the results by the end of the day.When I called Friday just to see if he had received them the nurse said they were there.I am pretty frustrated.Now I have to wait and hope I don't miss him at work tommorow.I gave them my direct line so they can call me at my desk.But if I'm in with someone I won't answer it.I told them not to leave a message on my VM at work.Last time a Dr did that I never got the message.We can't answer our cell phones either or we could be fired.I guess I will have to wait till Tommorow since its 7:43pm here and I highly doubt the doctor will call this late.
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Finished radiation last week. Thought I would post to this recovery board. I am dealing with some peeling and blisters. Also have some tiredness in the afternoon. I live in Minnesota and some of my tiredness may be because I am just tired of winter. It's going to be forever before this snow melts.
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Rlsteadman, congrats on finishing Rads!! Don't forget keep treating with lotions and creams recommended by your RO.It takes a while for your body to heal.
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Bunkie, I agree with RunFree that light weights are the way to go, and maybe a bit of guidance, either from a warm, knowledgeable, person, or a lymphedema-friendly video. I was so afraid in the beginning to do anything physical, so every week, I measured my upper arms, making sure I'd be aware if swelling was trying to sneak up on me. Still doing it every couple of weeks, by the way.
But RunFree, what's with the arm? Now? A year later? Triple phooey!
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RunFree, I have had breast pain lately.I know it probably has to do with the surgery or something .It's been over a year but Lately I can't sleep on that side It hurts too bad.It's fine if I'm not laying on it.Weird huh? I really think that breast is a little swollen.
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Hi all
Kate- sorry this recovery thing is just happening in fits and starts- rehab may be just the ticket for focused intensive therapy to get you over the hump but only you can decide.
Josie- really?? this long for ultrasound- I am not sure which of your doctors has to "read" or interpret or whatever you were told. The ultrasound is typically read by someone from diagnostic imaging and then a written report is given to your sugeon, PCP, MO or whomever. My suggestion is that you call them and tell them you will be picking up a copy of that report tomorrow thank you very much and they can charge you 37cents a copy or whatever.
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Kate- Have to admit even with all the fighting and bickering we all did growing up it all seems worth it now especially since neither of my parents are still living plus I have lost 2 of my brothers as well.
I am so sorry that you are going through such pain. I had a blood clot when I was in my teens(kicked in soccer would you believe) and I remember how painful that was but good grief you cant seem to get any relief. As for the rehab - kind of ambivalent about that. If it were me I would tend to want to stay home too but I can also understand why a rehab place might be more suitable because you would have round the clock people to help you and also it's not like it would be permanent. Sounds like you might need a Plan B instead of quick trips to the ER. I am sure massages help but they seem to be only temporary too. You are certainly in our prayers. Hard to do but keep the faith. Diane
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