After Radiation
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Have any of you seen a double decker pink bus??? Have to say...VERY eye-catching! and if it brings awareness and gets someone o go for a mammogram, well...tha cans ofpaint were not wasted then. I feel so different about the pink campaign this year...weird because I hate the colour babypink...butI am still grateful...NOT going to go to the rugby game fundraiser though and watch violence...pink dresses or not...seems incongruent given how violently our bodies have been treated hmm?
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Cindy-welcome-ya finished rads.congrats.yay.
I was like you.more tired after the rads then while doin them.Its ok.just follow your body.when i was fatigued i would lay down.when i was tired i would sleep.all that is healing.your body is talking to you.listen to it.
This too shall pass. just take real good care of yourself and drink plenty of water.
And dont forget to cream.
come visit us often.we have all the answers.every damn s/e someone here had.
sending gentle hugggggggs your way.K
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Cindy-
Welcome! Just like granny said...follow your body and your instincts (Granny is soo smart!). The same happened to me too...I finished rads in April and was more tired a couple months following everything... Keep being good to yourself... lay down when you need it and things will start to get better for you...
God speed!
Tori
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Cindy - Welcome. I have to agree with granny & Tori - I did feel the fatigue about the middle of rads but felt like I had somewhat of a delayed reaction a couple of months later. Listen to your body and rest when it tells you to. Continue taking care of that skin for a while longer.0
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Cindy...............I finished June 15th, and the fatigue has been ridiculous................I was never tired during.........felt great.....................now I feel like someone kicked my ass...........oh that's right................Radiation kicked my ass......................so don't be shocked.............just rest when you can............I'm 2 weeks away from 4 months done, and its not a jump out of bed..............and ready for the day, kind of existence right now.................its more like......out of bed............walk to the Keurig......put in my K-cup, and in seconds I have my coffee... read the paper, do the crossword puzzle, and I'm ready for a nap...........but I don't give in..............I have to really feel very tired to give in to a nap, not good, but I'm trying to get back to some kind of normalcy..................and I'm concerned that napping everyday, will just not cut it..........but if I really have to, I do just enjoy a brief snooze................be patient........this too will pass...........................not sure when, but I think it will..........
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Cindy, I finished rads on July 13th, I am getting better, but I still get that fatigue feeling in the mid day. It seems that I get ready to go somewhere, but after the shower, hair and makeup, all ready to go and I have this feeling that "my get up and go, got up and went"... Yes, Cindy, it is a different feeling... So, the fatigue thing, no one understands, they think I should be normal, so I don't share "I am tired" ... I do feel better when I am working, as I love my job and my mind is busy.
I got a 6 month-after surgery mamogram today on one side. I did not hurt while she did it, but it hurts now, like it's bruised. I will be okay, when I get the results. The tech said it was unusual that I get one at this point, so I am not sure why he ordered it, I am a little concerned that he felt something during the exam.
I will get the results in a few days.0 -
Thanks to all who responded to my question. Glad to know that this fatigue I feel usually in the afternoon is (normal)..... I am not one to nap as I end up feeling worse after one. Did catch myself dozing yesterday though!!!!!
Cindy
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Stage1 I dunno why techs aren't taught to close the mouth....They have no idea what is normal for individual cases. Before I started treatment my MO said I would have 6 months mammo as soon as treatment was over. I go in November, not quite 6 months out.
Cindy~ I used to fall asleep in my office chair with my hands on the keyboard! My fatigue sets in after work now - if I go home I won't go back out.....If you don't like to nap, just get your feet up for a bit and rest - in front of the tv or with a book etc. I also started taking prenatal vitamins and got a little pep in the step back, but like they say time heals all wounds, and it's true.
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I went to see my BS on Monday and I was telling her how swollen and tired I still was even though I'm two months out from radiation and she told me that the main symptoms can last for three to six months and that I won't be back to myself for at least a year. When I showed surprise about the year part, she was surprised that my RO hadn't told me that.
Sometimes it would be nice to not have to learn these things in bits and pieces from different doctors.
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Barbe - I know what you mean. My moron of a RO did not tell me anything about the after effects - I learned it all on this website. My fatigue lasted for many months after - I worked through rads and have a pretty hectic job so it was not fun.
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I was incredibly lucky in the medical team I have had. The only one that overwhelmed me with information was my first oncology consultation, but he used diagrams of the breast on which he made copious notes for me to take home which I have referred to as needed. He was not good with followup so I switched to a different onc that I am very happy with - she has a better understanding of my needs since she is one of us and has been there. Each step of the way, with every medical professional I've gotten the information I wanted and needed beginning with my surgeon. So far they have been very good at anticipating my questions.
I doubt very much I could have gotten any better care at a major medical center than I did in our own small community.
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Hi granny dukes
It's me eliz. Thanks so much for replying!Here's the email I just sent:
I didn't get your other emails so maybe the previous address was a little bit off. I don't regularly get a chance to access my email as I don't have the Internet at home. But I've been looking forward to getting a reply from someone on the blog.
I don't know if docs are so secretive about the radiation induced fibrosis (rif) because they don't want you to refuse the rad tx, because by then you've already had the radiation, but on the other hand, if you spread the word, other women might avoid the treatment.
My bs, who's a very nice new, young doc, never even heard of rif before she was presented with my disfigurement. Its appalling that they even keep this info from other docs. I hope this doc will do this research with me,. She said she would, but she's very busy helping to set up a new bc clinic with her hosp in the area.
For me, I always want to know: why? why? I think there has to be a reason for everything and maybe even a solution. But.... Even if there's not a solution, I'd like to know what's happening to me and why.
I'm attaching my questionnaire here. And anyone else who would like one, just email me a request.I'm having a hard time accessing the part of the blog discussion where I might get a reply or where there is the most discussion of radiation induced fibrosis. Any suggestions? Thanks. Eliza d
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Welcome Cindy--I did get tired 1/2 way through rads and it last for several months afterwards.
Barb I so agree with you why don't we get all the information upfront????
Chabba you were so lucky that you did get all the info you felt you needed up front. I have great Dr's but I do think they dropped the ball on some of the information. Some more than others.
Elize I will PM you.
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Elize-I did get your email but my puter suks.its old like me.Any suggestions on how i can fill it out for you? I opened it but cannot do anything else.
Cindy---see I told you the sistas know it all.keep hanging with us...It does get better.
I had my first mammo 1 yr.after the surgery.I think every DR has their own protocol(damn i hate that word)
Hey girls we reached over two thousand results!!!!!!!another milestone....remember the key word AFTER RADS!!!!!!Parabins.gosh i wish that was the only thing we had to worry about....Tori,Sherry,JO JO and I finished around the same time...how far we came since then....WE DID IT SISTAS.huggggggggs K
hope i didnt forget anyone!!!!!!!!Rads brain.....
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Granny - Thanks for starting this thread - it has been a wealth of good information.
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could not have done it without all of YOU!!!!!!!!just wanted to say THANKS SISTAS....
It feels so good to see sistas helping sistas.
(((((((((((((Ducky))))))))) always makes us crack up with her friggin stories!!!!!!
hugggggggggggs K
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Granny yes thanks for starting this thread. I don't know why but my breast has swelled this week and has that heavy full feeling again. urgh thought that was all over with.
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Sherry---I know what you mean girl....ugh... My skin still feels so leathery sometimes too...I find that when I go without a bra for awhile...my breast feels so much better in every aspect...
Another thought is maybe you have a touch of breast edema? I have that and when it acts up, I swell...I just do some massaging and it seems to help...It always seems to act up when I "overdo" things...
GRANNY-thanks for starting this thread!! You Rock!
Tori
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Tori I def have breast edema. I had been getting regular messages and it went down but has flared back up. I am calling my message therapist tomorrow to see when she can fit me in.
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Sherry- I find with the edema i have to watch my salt intake also...that makes it swell too.When I get that heavy feeling i go right to that harness(compression bra).that helps too.good luck honey.you sure have benn havin some rough spots.
Tori---I have been sleeping without a bra.2 days now and you are right ....at first i was worried cause i have never done this but now i see those girlies do need some air.Thanks for the tip.
Im leavin tomorrow to go to Brooklyn...be gone for at least 10 days.I do have 1 crappy puter soo ill be on and off...and more off then on as i do have lots of people i must go and see.
Soooooooo my sistas hold up the fort while im gone.I WILL BE BACK. huggggggs K
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Thanks granny, maybe I need to get one of those compression bras for when the edema hits.
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Sherry - Granny seems to be the resident expert on the edema stuff - she has been through the mill and back.
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I was exhaused after rads too..not during..put it down o the rads but apparently that breathing through a straw feeling was a heart attack ...hard to know what the symptoms mean someteimes so do not be afraid to get back in to see your doctor
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Sherry------if it is edema my PT told me i had to wear the compression bra 24/7.it worked and it was not that uncomfortable.My problem was that i only had 1 and i had to wear it everday and it had to be hand washed...what a joke after i washed it.i wrapped it in a large towel and stomped it till all the water came out and then i ran all over the house looking for the fastest way for it to dry.no dryer either.it takes time to get more then 1 that fits.I laugh about it now but it was not funny then...and it is expensive too.I wish you the best of luck.you had too many rought spots sista.sending you a big hugggggggggg.try to get your PT to order it ASAP if it is edema.along with exercises the swelling goes down fast.I still have the bras for emergencies(actually i bought another one.that bra looks like a HARNESS.0
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I know a few of us have the same pain complaints, I found this article on the web thought it was interesting: Post Breast Therapy Pain Syndrome (PBTPS)
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http://www.cancersupportivecare.com/neuropathicpain.php
There is the link to the article...I haven't researched anyone on it, just looking at it for information purposes.
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All my After Rad Friends........................I was informed completely by my RO as to what the SE's would be..........................however, forgetting that long speech, which previous to surgery (when I saw her) meant "shit" to me...........I thought.....................just get me through the surgery, and then lets worry about after................well she is so thorough, of course she was going to give it to me first.
Now, Rads are all done, rang the bell, got the hoop la, from all the techs, and it was a great day . .......then my only darling male tech, Mark said to me...................now the effects of Rads is really going to take over................he said "don't fight it, rest when you have to, and this could go on for several months..................then he said ..........we basically abused your body, and you body is going to make you pay for what was done, but your gonna get through this, and your gonna be fine, just be patient, and don't expect to "run the 4 minute mile tomorrow"................I said "Mark honey, I couldn't have run the 4 minute mile when I was 20...............he laughed, but he was right.............it takes time..............but at 76, I don't know how much time I have.......................oh well, this too shall pass...............
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Ladies..........as a footnote.............I guess we all want to be the way we were (whether just ok, or great) before this all happened....................but we have to realize we probably never will be..............it takes a toll on your mind, your body, your very existance.................but we are all fighters........we will overcome, maybe we won't win the WAR, but just think how many battles we have won...............with the help of God, and each other, we will see the finish line.................hugs to all of you...............your all what keeps us all going..........God Bless.......
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Gina - I can across the same article some time ago. I printed it out and took it to my RO who laughed in my face after he read it saying that would not happen from rads and whoever wrote the article did not know what they were talking about. I hated my RO very much anyway so his response did not surprise me. I do think it is real - if only sometimes doctors would listen to us and take us seriously........... 0
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Ducky- my male rad guy was also a Mark..but Marc!....notquite as direct as yours but they are right..it takes its toll and keeps on giving as it continues to work its magic...no..we will not be the same as before...maybe we will take more risks..maybe a few less...hard to say really, hmm? But...we are alive...we are healing..we know more about ourselves than we did before...we know that we can withstand fear and cope with scary machines and baring our breast to whomever comes in and that we can use humour to deflect until we are ready to cope in a different way..that tears will not kill us or the people around us whom we are trying to be strong for....we know all kinds of things. you will get stronger...you will feel better as your body heals...
sending you hugs
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