Radiation recovery
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April, you and dear hubby are in m y prayers for healing and peace to be restored to your life soon as he progresses. What a scary ordeal you have both been through! ((HUGs))
Bunkie---you too----I am just praying tonight for everyone in the BC.org community in need of comfort and healing and hope.....
Hugs to all and Have a safe memorial day weekend. Summer is officially here, I'd say.
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PS Josie there is a drug called BUSPAR that helps with panic attacks. It makes you feel kinda wacked and sluggish for the first couple of weeks., and I didn't stay on it for more that 6 months, but it does help. So does Xanax at bedtime..... I had them when I was 32 and thought I was going to lose my mind. Entirely stress produced. Saw a counselor which was a huge help...strongly recommend it, whether it is pastoral counselling or professional counselor.Big D---we haven't forgot you and we miss you and hope you will post again soon. Girl, you been gone too long now, come on out and say hey at least!!!!!!!
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Redheaded, thanks. I have a professional counselor. Unfortunately it's not the one I saw years ago. Because not to many take BCBS insurance. So I had to find a new one.
She's good . I've only had a few sessions and she has great hours like 7or 8 in the evening. I don't even have to miss work.
I've heard about Buspar. But am trying not to take anything for the anxiety if I can help it.
We had a meeting today that was kind of a joke and the nurse practitioner kind of called me out without mentioning my name. She didn't like that I wasn't helping enough when they got busy in the back. But when they asked me to go put a few patient's in the other receptionist threw a fit because her and I were by ourselves up there and it was crazy with phone a and patients to check in. So I couldn't go back and help them.One of the MA s spoke up and said she looks forward to being up there for her week because she knows when 4:30 comes around and the phones go off she can leave where as her week's in the back you never get out of there on time.I couldn't believe it. This is why I'm going crazy on Tuesday and Thursday because o that attitude.
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My grandbaby on her first camping trip. She is 7 months old today!
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April I hope you felt the love when we called for the big group hug. I am so relieved to learn that husband's surgery went well. Hopefully his recovery will be uneventful and you can both move on to better things. Your granddaughter is absolutely precious! Beautiful and happy little thing and love all that blond hair.Josie you know I am always in your corner and here anytime you need to talk. Hugs to you.
Joan, I am awfully glad that you will be finished in just a few weeks and can enjoy some quiet time. You have such a crazy busy life, it will feel good to unwind and relax again. I hope you enjoy this summer my friend. Call me sometime when things are slow!
I can't do a lot of shout outs right now. I did want to let everyone know how much I love you all. Happy long weekend and enjoy but please be safe.
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Janis, thanks have a good weekend also.
April what a little Doll thanks for sharing!!
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Ok, Gals, I finally have a diagnosis for this blasted infection in my lungs. It's BOOP (Bronchial ? organizing pneumonia). Go figure. Have spent since last tuesday in the hospital and had an open lung biopsy on Thursday (but April, I was still in on the support party for your husband and the group hug). Anyway, after doing every culture and test known to man, they found this reasonably rare lung disease. Apparently means I'll be on Prednisone for 6 months (most of that time trying to get back off it).
While in the hospital I found I had a new allergy , which is to Apresoline (hydralazine). My blood pressure had been running about 170 for 3 hours (it's normally much lower than that) and they decided during the late afternoon that they needed to bring it down. So they gave me this stuff thru my IV. Boy did I have a reaction......my blood pressure shot up to 224/117 and my pulse to something over 140. I thought I was a goner. I think the nurses did too. The Hospitalist that had given me the stuff in the first place was finally reached whereupon she wanted to give me another drug which I refused until they could get another opinion. I was afraid of what the next drug would do. The next doctor said they would look over my whole chart and let the nurses know what to do. Anyway, after about 30 minutes it started to come back down naturally and I ended up fine. Took about 3 hours before I could even sit up or everything shot right back up again. Talk about a pounding heart ... I could feel my heart beat all the way in my toes! My pulmonologist came in the next morning about 11 just to check on me before surgery and when I told him I'd had a reaction to Apresoline, he said.....Oh no, they can't give you that, you have PVC's (premature heart beats which aren't a problem just feel weird) and that drug will bring your blood pressure up! Yep, that's what it did. So all this required contacting my Cardiologist to send paperwork to the anesthesiologist to assure him all was OK with my heart and get it all done by 12:30 for the surgery.
So then they wanted to give me a drug the next day just as a "maintenance" blood pressure drug. I had told them I would only take 1/2 dose. I got along with it fine, except my blood pressure ended up too low, which is what the pulmonologist said would happen. When the cardiologist came in he said he hoped I wasn't going to continue taking any of these drugs as I didn't need them. Talk about "over kill". Anyway, I'm fine now, off all these extraneous drugs and am sure I'm going to start to feel better soon. And next time, I'm checking with the pulmonologist or cardiologist before taking anything......
Hope everyone's having a good holiday weekend (do you celebrate this one in Canada? I don't remember). Love and hugs to everyone, I'm thinking of you all just no energy to write.....
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OMG Sew! Thank goodness they figured it out and that you came out of the allergic reaction without any intervention...scary place that hospital. I guess that lung issues are very hard to diagnose for some reason since my hubby has likely had his issue for months and they still are not sure what caused it or why he has it at all. But, they think it is at the core of all of his issues for the last year or so. We shall see. He is doing much better and is really wanting to come home but he has drains in and he is still at 800 Ml of fluid coming out of the lung.
Feel better my friend, my very first friend on this thread. You have a very special place in my heart and I want to make sure you are on the mend so you are in my thoughts and prayers always as are all the lovely ladies here. xoxo
Janis, I most definitely feel the love and the group hug from all of you!
Josie, thanks. I am biased but I think she is so adorable I can't even stand it! LOL
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Sew, wow, you have been a whole lot this week. I'm sorry . I hope your doing a little better. And I am glad you survived the allergic reaction. What an ordeal. Take it easy now and get feeling better .
April, glad you DH is doing well. That's a good sign he wants to go home.
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April, tell your hubby that I also think diagnosing lung issues seems to be quite hard. I've got 2 friends with issues at this point, and it took months and up to a year to diagnose!. Also....be sure to tell him that removing the lung drains is a piece of cake. Doesn't hurt at all, can't really even feel it. In fact, it's probably only 18" long or something so is very quick, not like removing those breast drains I had when the Dr. ended up across the room to get it all out
. Also, if they let him up at all, make sure he stands and walks as much as he can as that helps the draining......at least according to the Dr.'s out this way. I'm so glad they've found this diagnosis for him, and I do think he'll get better very soon. And your Granddaughter is just the cutest thing possible. What a great way for you to spend some time not worrying. I'm sure that soon you'll finally have smooth sailing. Between your BC, your hubby's illness and taking care of your Dad, not to mention your diabetic kitty, you've been thru a whole lot this past year or so. And yes, I also remember fondly when we first met on this thread, and I'm glad to be your on-line friend. Take care0 -
Thanks Josie. I'm certain I must finally be on the mend. At this point all I'm doing is sleeping, but then you never get much sleep in the hospital so I tell myself I'm making up for lost time! Good luck with this job and all the personalities and issues which seem to surround all medical offices, and not just the ones you're working in (I have friends in the field who get involved in the same politics and just hate it). There is something out there for you, and in fact, this could still be the right job perhaps it just needs a bit of adjusting on everyone's part.
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Thanks Sew, I even slept in today till 9:20am.I know how little sleep you get in the hospital. So just sleep away. That's when your body heals.
I know somedays it seems like I should just quite because is it worth all the stress then some days it's ok. But I am still looking because I believe there has to be something with a little less stress for me. I hope. I prayed to God one day and told him I would put my situation in his hands. So I know he will get me through it. I'm on my lexapro and feeling a lot better already. I'm only taking 5 mg right now but may eventually will work My way up to 10 mg. My counselor says she has a lot of patients in the healthcare field. What does that tell you?
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I just stated, and had 4 days of radiation therapy after having a lumpectomy. I'm experiencing a lot of burning sensation and the upper and middle of thebreast feels sensitive inside. I am using clear aloe Vera and sometimes aquaphor. Any suggestions what I can do to ease this discomfort since I have another 6 weeks of daily radiation to go. Thank you.
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Buff, I don't know what time of the day you do your rads, but you can apply lotion up to maybe 4 hours before your treatment. Before you gp back for your treatment, make sure the area underneath your boobs are dry. ( I am busty, I burned there first, and I think it was because of perspiration and lotion collecting there) The area needs to be dry. I used a prescription crème called X Clair. It was pricey but the pharmacy you mail order it from in Florida had special offers of 2 for one. I just decided I was worth it, and my insurance didn't pay a dime of it. It contained most of the ingredients that studies say help. However, you cannot use it if you have a nut allergy. I also used Calendula crème that was vey nice. I hated the Aquaphor and Cetaphil is a little bit less greasy. Some ladies took Tumeric pills which seemed to help. There was a small study saying that helped them.
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Buff, sounds like your feeling the effects of radiation already. Redheaded is right. Moisturize after Rads too. I didn't have too many skin problems except for a sunburn but some do.Drink plenty of water and eat plenty of protein. You will get plenty more helpful info if you stick around.
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buff, I also had burning within 4 days of starting rads, but it does get better. You should moisturize about 4 times per day, and with the aloe just let it air dry if you can ( I used to just walk around with 1/2 my shirt on and the BC part thrown over my shoulder. Along with redheaded' suggestion for keeping dry I used corn starch in a nylon stocking as a powder puff which kept me dry (I'm also big breasted). And be sure to drink lots of fluids and get some sort of exercise daily, just a gentle walk on those fatigue days will do wonders. Oh, and the radiation actually works from the inside out which is why you're feeling it inside the breast. You will get used to it. Good luck and check back in with us, we love to hear from people.
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Buff, do make sure to show up a little early for your next treatment and ask to see the nurse and/or RO, whether you still have tenderness or not. Probably your discomfort is perfectly normal, but there is a chance that your healing is not quite complete, or that you might even have a bit of an infection. If so, the sooner they address the issue, the better. Probably your center is much like mine--nurse always available, and an RO or two (not necessarily your own RO) right there, ready and able to see patients and address the all out-of-the-ordinary issues that always seem to crop up.
I had redness and heat after my first treatment, growing more and more noticeable all that first afternoon. The next morning, I insisted on seeing the RO before treatment. She agreed that that I was having an early reaction, and gave me the day off. As I had started on a Thursday, that gave me a three-day weekend. On Monday, everything was just fine. Maybe the long weekend will settle your issue as well.
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Sew my friend, what an ordeal you have been through. Oh my gosh I can imagine how scary it was to feel your BP and pulse soar so high. Hopefully that is an experience you never have to repeat. You are definitely your own best advocate and I know you will never let this happen again. I am really sorry you had to experience all this. You too have had a lot of stress in your life and sure don't deserve this. Big (gentle) healing hugs to you, and plenty of them.Buff you came to the right place for help and support. Rads is different for everyone and I know the nurses and RO's will be able to help you through the journey. I can't really add much because you have already gotten the best advice here. The ladies here are not only smart, but as you have probably noticed fun and very supportive. Don't be a stranger.
April, bless you and your DH for all you have been through. Your beautiful granddaughter must fill your heart with so much joy.
Josie glad you are tolerating the lower dose of Lexapro. So far I am not having issues with the 10 mg.
Much love to all of you special ladies!
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Sew - Wow sounds like you went through what I did to find my rare lung disease Sarcoidosis. At least yours has a short name. Good grief. Well I am the prednisone queen after 7 years so if you have any questions just ask. 6mos is not long really. There is a book I read when I first went on it called Coping With Prednisione by Eugenia Zuckerman. It is a paperback and a very good book about the drug. Covered stuff even my DR did not tell me. Those reactions to meds are awful. Especially the heart, BP and pulse. Just had one last week and my body is still reacting.The only thing that helps it is sleep and water. That lung biopsy was fun huh? I had complications but had a great pulmonist. That does help. Well at least you know and it can be treated. Get a lot of rest and do not push it much. Took me about 3 weeks ro feel normal.
Buff - I used those two only because everything else made me rash up. I did put a klenex under each boob after my treatment was done and I used the two items. It absorbed sweat and the aquaphor excess. It looked strange poking out of my stretch bra but worked well.I had a lot of burning also and pain. I have very sensitive skin and am hypersensitive to everything. I also had nausea which they say is rare. Just know it all calms down once your body adjusts to the stuff. I got through it and you will do fine.
Redheaded - Thanks for the prayers. I am hanging in there.
April - I think it was you that posted the photos. What an adorable child!!!
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Good grief Sew. It's a good thing you are your own advocate. You must have been so scared. We all put so much faith in our doctors and while that can be and is a good thing they are not infallible so we better do our homework. I have def gotten the message since I was DX with BC. Glad you are on the mend.
We are vegging out today after graduation and engagement parties. Last night we dined out which was nice. DS is working today - double time - can't turn that down. Lots of drama with X GFF. None if it good. Save that drama for another day.
Have a nice holiday everyone. My flags are flying! We owe our military personnel more than we can ever repay.
Diane
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Hi all, I have finished 20 of 35 rounds of radiation. I have stared to be red and tender just in the past few days. I finish on June 15, i am planning a trip to Vegas on the 26th. My question is how long does it take on average to heal completely. I was really looking forward to laying out t by the pool.
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Hi MeToo, I like your screen name. Glad to hear you are making it through and can see the light at the end of the rads tunnel.
I was healed in about two weeks. My radiated breast had swelled a bit and was back to "normal" in 2 weeks. However, please be very careful about the sun - especially such strong sun. The summer after rads I bought some bathing suits that covered my chest better (no cleavage!). But still, the fabric may not protect from the sun. There are some great shirts and cover ups that are sun protectors. The problem with getting more sun is that the skin damage can be cumulative. Just be careful and use sunscreen, cover ups, and even an umbrella.Buff, I agree with Brookside. It is always a good idea to report any discomfort to your nurse and RO. This way they can ask the techs to be extra-vigilant when treating you. I did not have burning in the beginning. I did develop an itchy red "dot" rash that lasted the entire time. I was told to use Aquaphor so I did. But my RO gave me a sample of X=Clair and it was the only thing to give me relief. When I went to fill the prescription it was very costly so I decided to finish rads without it. I did OK. I also got irritated and cracking skin in the crease underneath where it did not dry well. I dealt with the discomfort by putting a silk scarf between my skin and the cotton camisole - just at that most sore spot. It felt good. I did not leave it for long as it doesn't allow drying as well as cotton.
Best wishes to both of you....and please join us with any questions you may have. You may also find a radiation group for this particular time of year. OK to do both!
Joan
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April, hugs to you. You are burning the candle at both ends...but you've done this before. Once he is home, I hope you can settle into a simpler routine. My prayers are that he will continue to improve each day and that you will have strength to get you through. And your grandaughter is so precious - is she standing in that last pic? She looks so big. Enjoy those moments...it balances the difficult times.
Hope kitty is doing OK.Bunkie, grrr your stories are difficult ... and some things so unnecessary. I hope you are catching up on rest and feeling better.
Sew, of course you set them straight in the hospital! I totally agree that we have to be our own advocates. Who else will do it? I do not understand how some patients can be passive about their care...but we are all different. I hope, Sew, that you are feeling better and more stable. Little by little you should get your strength back. I am so sorry you spent last week in the hospital and enduring such difficult tests. it sounds like you are home and that is good. Hey a year ago last week we were buying buttons in Berkeley!
Good news - I did not travel to CA in May as usual....I may be coming in july. I hope you will be feeling better by then!Josie, I just don't know what you should do. Since you do not have another job, I guess you stay.
IT sounds like you cannot win there. Try to keep your sanity. I love that you have prayed for guidance and a better path. Let's count on that happening.Janis, I hope you are doing OK. I know it has been a really tough year for you. And yet you cheer everyone on and don't complain....just know I am thinking of you. I have 15 more days to work then my summer arrives! (June 15th).
Diane, glad you had some fun family time this week end. While Memorial Day is a solemn occasion for many, I do think we re meant to reflect and live our lives to be worthy of those who are lost. Family time is exactly that.
In my town, which is a summer resort area, the business gear up for big $$$...they sell all kinds of red white and blue shirts and dishes and cookies....but today when my long-time military husband drove through town, he only saw a few flags. I had him take me and sure enough....on the drive into town we passed dozens of homes and only 6 flags. On Main Street we saw only 9 flags on the entire street. There should have been flags all along street. I don't understand.Red, thanks for reminding me about the X-Clair ointment. It is really good.
Thinking of Cindy, Big D, and others who are not checking in right now.
Hugs...
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I need help and suggestions from all the wonderful ladies here. I had a UMX in January, and have just finished radiation. I am going through the itch, burn and peel stages now, especially on my underarm where the lymph nodes were taken.
My problem is that since the skin is damaged right where my bra would hold around the side, I can't wear a bra at all, BUT my other boob is way too big and saggy to leave floating free, and I am getting an irritated nipple from rubbing on my t-shirt, and aching muscles from it being unsupported.
How on earth do I support one boob while avoiding the irradiated area on the other side? Luckily we are just going into winter so I can hide under big bulky jumpers and scarves, but poor old lefty needs support!
HELP - any suggestions from anyone who has been through this?
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How absolutely miserable, Suems. After all you've been through, it is so totally unfair that you have to deal with this stupid sore nipple. If you are anything like me, these "minor" irritations bother you more than some of the actual pain of surgical recovery!. For your poor nipple, have you seen those pasties available in some bra stores? I think there might also be underboob support stickies as well. Come to think of it, maybe your RO or rads nurse has some ideas--one thing about them is that they have dealt with just about every rads side effect there is..
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Hi Y'all! Thank You for your thoughts&prayers. Going to try and not lose my post...grr
Welcome - Tapanga yeah rads done! Buff22 sorry discomfort so early show&ask is good advice also free boobing so nothing touches the girl:) Metoo here's to 6/15 hang in there! Suems where a ca I top with it pulled down and open on the umx and alter any old bra.
BigD - yeah, your lurking! Come out if you can...we miss you (((hugs)))
April - yeah, your hubby doing better! GD is so cute:))) Hope you can catch your breath...xo
Fran - yes, good news!
Sew - Hope your energy level is increasing each day! He hee BOOP
Diane - yippee the all good on mammo! Sorry for your loss...yes, run!
Bunkie - sending good thoughts on health...7/1 hug the wait...is your house on the market? BT still there!
Red - happy families,y time and summertime!
Brookside - how's work...you NE gals need another meet up with picks:)
Josie - ugh! Panic attacks and challenging job...chin up...can you get counseling so you can vent!
GiGil - ah, lake time family time...new memory making times...enjoy!
SAB - is the book ready for a book tour? How are your girls? Thinking of you kayaking with hubby:)
Janis - drive by shooting...yikes! Hope she moves out of your neighborhood scary stay safe!
Joan - breathe, the summer off may recharge and give you new opportunities with all those GKs, DD&DS, hubby, and rocks or sea shells.
Tornado sirens yesterday:( prefer earthquakes. Hunter & I are adjusting to another new normal. Biggest challenge will be choosing where to go, call home...CA or CO or both. Can't sell TX until Nov so pickle ball, line dancing, gym, kayaking...friends have been so sweet...GF&dh came over and did my honey do list...especially the garage...he was hubby's pal
talk of more storms tonight:(((Shout out to all...hope I don't lose this post again
(((Hugs)))
Cind
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Suerms,
Don't know if this will work for you, but try buying a sports bra a size or two larger than you need. Put a very soft men's cotton U necked t-shirt on first and the sport bra over it. You may be able to tolerate that on the surgical side. You might could even cut the fabric on a sport bra down to the band on the surgical side??? I rolled up roller gauze around my finger to make a long roll and tucked it underneath my boobs to keep skin from touching skin. Also, your nursing staff might have that stretchy stuff that a tube top is made from. They cut you off a length of it and you fashion a garment from it (cutting sleeve holes and then tuck an ABD pad into your underarm till it heals and on the non surgical side, you could tuck in a breast form from a bra with removable pads.
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Suems, what a dilemma. Would it work to use an ace bandage and sort of strap the big boob down with a soft t-shirt fabric under the boob to help it keep dry. I envision running this bandage across that boob and over the top of the opposite shoulder and back around under the good arm etc. sort of like a sling for that boob? Since you can wear jumpers it should cover this up but strap the non-surgical side down. Don't forget to continue to moisturize moisturize moisturize the BC side. I found I loved Aloe Vera and also calendula cream but we each have our favorites. Good luck...
Cindy...great to hear from you. Remember to duck when you hear the sirens. your summer plans sound great. And, yes, my sister now called me Bett
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Update: I went to town this afternoon wearing lots of creams on the burnt side, and a cotton pad taped to my left nipple, then an old baggy t-shirt, and big jumper over the top. Felt weird, but not painful (but Lefty still unsupported).
I went to the local BreastCare shop (sells mastectomy bras, prostheses etc), and asked for help. In no time at all I was wearing a "post surgical" bra and softy insert. The bra has fastening as normal at the back, as well as the front, all cotton with a pocket for insert, wide soft shoulder straps, and a very wide band around the sides. It is specifically designed to be worn as the mastectomy scar is still healing. I tucked a gauze pad in the side over the bit of missing skin, and suddenly I felt "normal" for the first time since this saga began in January!
The woman who did the fitting was wonderful, very sympathetic, and agreed that I was in a very awkward position. I had been putting off getting my silicone prosthesis until my chest was flattish. She said it didn't matter about my lumpy bumpy chest, with its haematoma, seroma and the dent where my scar adhered to the chest wall, or even about the big pointy bit under my armpit which I have nicknamed "Mount Kyle", after the surgeon who created it. She said it was the biggest dog-ear she has seen, and agreed that Plastic surgery should remove it. But she said it wouldn't matter for the comfort of the foob.
Once the burning heals, I will go back for a proper mastectomy bra fitting and my silicone prosthesis, all paid for by the New Zealand government. Yay for NZ Health Department, who hand out a $600 grant for prostheses and bras, renewable every 4 years. I believe the figure is per side, so $600 per foob.
Thank you all so much for the suggestions, I was having all sorts of strange plans for cutting up clothes and bras, or just taping or bandaging poor old lefty.
I now feel like a normal, double-breasted woman, who happens to be badly burnt, rather than a mutilated being with bits missing and damaged. Lets see how long it takes for reality to kick in!
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Hi Suems, it sounds like you found some options at the shop. So glad it was helpful for now. I hope each day brings healing.
Cindy, a tornado warning, really? Glad you are OK. Wild weather for sure.
You definitely have some decisions ahead. It must be tough to be in the TX house but I guess there is a reason for each step we take. CA or CO - either sounds good to me. Maybe both?
I am glad to hear you have the support of good friends. It must be hard for all of you. How is your big, frisky, faithful pup? Keep checking in! Love your styleWishing everyone a good day ahead.
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