Lumpectomy Lounge....let's talk!
Comments
-
I used to do the fancy scrapbook pages, with the stickers and borders and geometric shapes of colored paper. I still like having an actual album of pages to page through rather than files of digital photos.
Yesterday I transferred the July and
Aug photos onto our long term storage hard drive. Then I transfer
copies of the pictures I want in albums into subject folders - Dad's
birthday, Lew's mom's birthday party, my HS reunion, my cancer haircuts,
etc. and crop them and set up a file of what text will go on the pages.
Then Lew sits down with me and he sets up a template photoalbum page
and we arrange the pictures on the page, changing the size as needed,
and he puts most of the text directly on the photos, though occasionally
we'll need to create a special text box if it's longer. He prints out
the photos along with a preview of the 2 page spread for me to use as a
guide in creating the pages. I cut the photos and just do a simple layout with a banner heading.I also go through and label all the
photos in long term storage. We use a coding system, first letter is the
event: V = vacation, B = birthday, C = Christmas, etc. Next is the the
year, then the photo # in that series. If there's a person in the photo
that we might want to search for at some time (like to make a graduation
collage or the slideshow at a funeral), we put the person's initials in
the title. So, a title might look like: C_14_1_cn_ld_ One of my
projects this weekend will probably be to go through and retitle the
photos I transferred yesterday.0 -
Puffin- That is a very impressive filing/sorting/search system
0 -
Panthrah HAHAHAHA
0 -
I'm impressed, Puffin. I do label every photo and put them in labelled folders which are dumped in the appropriate year. Some I've printed. You are extremely organized. Congrats!
0 -
We've used the search for a person's initials many times to create projects, grandchildren's high school open house photo display, wedding anniversaries, and then the slide show memorials at the funerals for my mom and my brother. I try to keep up on the labeling throughout the year so I don't end up at the end of year having to label everything at once.
0 -
Puffin, I'm with you. I try to keep up. Best if I do it immediately. I'm so amazed at how you have it organized!
0 -
I had a lumpectomy on 9/2/14 and when I took my bandages off today I will admit I was quite shocked at how much of my breast appears to be gone. I am struggling finding a supportive bra to wear that doesn't irritate the stitches in my arm pit. Any ideas? I'm thinking I'm going to have my dr write me a script for a prosthesis until I become comfortable with what I have left. Has anyone else had this experience?
0 -
Kerensa I had a script from my RO so I could get a bra and I was not sure I was going to like them but I have to say they are the most comfortable bra I have worn and to my nice surprise my insurance will buy me 4 a year. They have very pretty ones and all sorts of them including sports bras and tee shirt bras. They are much better then I had in mind they would be and the lady who helped me was very knowledgeable and kind and helped me choose what fit me best.
0 -
Debster, where did you get yours? I was told to go to Nordstrom. May check it out this weekend. Will get a script from my dr Monday. Anything has to be more comfortable than what I'm wearing.
0 -
PontP... Suprised about your swelling at 6 weeks out. I am wondering how our rad tx will affect that, if at all. My first lump had swelling and "she" went thru a lot of changes in appearance in the 2 weeks before my next one. With all the fluid I have now, really wondering how she will finally appear. But regardless, so thankful to be through with surgery and being able to do less extensive procedure.
Vick..Happy Anniversary.. that is so awesome, I have thought about how each anniversary will feel! I dont want to get older, but I want a lot of cancer anniversaries, lol... Rush the cancer time clock but slow the aging clock.. ( always want my cake and to eat it too!).
Puffin.. In your free time I have hundreds of photos needing sorting... feel free, lol....
Blessings to all~~
0 -
Psalm, I'm the only one who seems surprised that I'm still swollen. Surgeon wasn't concerned when I saw her on the 21st. It's not a huge amount of swelling and I am squishy. But I have lumps. When I had my core biopsy I had hematomas that pooled in that area and it didn't go away until just before my surgery - 7 or 8 weeks. In fact those hematomas screwed up my MRI and ultrasounds enough that the radiologists reading them thought my cancer was more widespread than it actually was. That's what I suspect now.
0 -
Ahh Pont... makes sense. We all heal differently and if you had that much issue from biopsies then no suprise after surgery. I was actually suprised and how quick my changed after first.. I had 4 or so different boobs in 2 weeks, lol ! This time around, tomorrow will be one week postop, and the only change has been audible.. my sloshing... she still looks about the same so far..
Keep me posted please on how rads goes..
0 -
Psalm, It IS interesting how differently we all react. Who'd think there was so much variety? At least it was never dull those 2 weeks - you never knew what you were going to have
It's possible I have some redness caused by the rads. Noticed it tonight. I'll see what I look like in the morning. If it's still there I'll talk to the nurse. Doesn't hurt or anything.
0 -
Pont.true.. initially it turned upward, looked like a "young" boob, my 9 year old daughter said "wow Mom, you should get him to do your other one like that too!" LOL
alas, she was short lived and "fell" back down a couple of days later!
I think the radiation kinda continues even after the treatment, so I dont think that is an uncommon finding, but be sure to talk with your nurse, maybe you are just getting your tan a little quick ; )
I am suprised that 2 days out you see difference, but I have never worked in that area, and my patients who I saw with radiation had been at it a while, and were all different, so we continue to be a unique "variety".
0 -
Psalm, my girl never looked perky after surgery. In fact rather sad, the nipple turned down and hasn't bounced back up
I've had 3 whole rads. I'm rather surprised too that I'd "burn" that quickly. That's why I'm waiting to see what I'm like in the morning. I've been going braless and perhaps my t-shirt irritated the girl. I'll definitely talk to the nurse though - better to be prepared.
0 -
See what creams your MD suggests too, I have read on here some that use Aquaphor... I used that on some of my home health patients who had bad skin issues and it worked wonderfully, in fact one sweet family would "fuss" at me when I was off, because the other nurses didnt use it and they could tell the difference from just couple of days not having it on skin. I have dabbled around with herbs, made a couple of concoctions for dry skin, etx and think when I get ready for rads I will be "brewing" me up something again to have available.. I have Vitamin E oil, Lanolin, Cocoa butter, etc that I melt together with oil.. hmmm maybe I need to get at that sooner, would love to mix up something that could be help to others too!! Eager to hear what Rad nurse says..
0 -
I have issues with aloe and it seems Aquaphor doesn't have it. I use an olive oil based soap (with cinnamon and cloves for scent) that is wonderful. I want the gal who makes it to do a lotion. I'd think that would be soothing. I use Dr Palmers Cocoa Butter lotion normally. I'm anxious to hear what the nurse says too!
0 -
Peggy I did take some pictures that I can put in my journal. I journal everyday.
0 -
Hi Ladies,
I am new to this forum, but I recognize some of my August Surgery Sisters!
Lots of great conversations about rads, file organization, bras! Love it!
Psalm, I forgot to congratulate you on your clean margins! Second time. You are strong!
0 -
Pontiac Peggy...I finished rads august 13 th...I was scheduled for 28 whole breast and 8 boosts...after 13 treatments and over a weekend, I became pretty concerned about my accelerated burn...I know ladies got burned but this was pretty bad AND also really bad on my upper back...so before I had treatment on that Monday...number 14, I asked to see the doc...he immediately said that I may be one of the 5% who have a genetic disposition for accelerated .....had to take a week off and it did get better....doc cut off 3 whole breast and 3 boosts ...then at the end of my 12 th whole breast my burn was again really bad...so I had accelerated burn and they don't know why it happens to some and not others.
The nurse may say that it's normal as you are only on treatment #3....but if you do a few more and it's super burned, you need to see the doc. They even had the physicist come in and make sure everything was lined up right and the " energy"? ( can't remember the right word) was then cut down to 6 from 23...whatever that means! But just want you to know that it's something to speak to the doc about! Good luck and my RO only had me use radiaplax...Rosie
0 -
Nancy, I keep a diary (electronic of course) but decided I wanted a separate journal for the BC odyssey.
Sassy, WELCOME!
Rosie, thanks for the info. I will definitely keep on top of things. I've heard enough here to know that I have to be vigilant. Sorry you had so many problems. Thanks for sharing your experience!
0 -
panthrah, glad all the surgery went well and I agree amazing how good a shower feels post op! Glad its looking good! Rest up as much as you can.
puffin, I had good intentions of a journel and started out good with keeping notes and question/answer logs but when rad started everyday I havent written a thing except what my countdown was on every Friday! I do have progessive pictures I've taken during treatment ( soon to be deleted!!! Know what you mean!)
I had RO appmt this Wed and he delayed my rad end date to Wed 9/10 due to skin redness, peeling, tender, weepy and on 5 days off rad and now silvedene cream + aquafor + miaderm lotion. Whew! So counting down still!
Have a good Friday all!
0 -
Mripp, sorry that your end date has been delayed
And even sorrier that you have having such crummy SEs!I'm not deleting the photos - they are on my computer, not phone and camera.
Take care!
0 -
So, I met with my surgeon last week, and it turns out I "need" to have axillary dissection. Apparently I'm in a gray area because of having had lymph node involvement at dx (confirmed with fine needle). Now that I've had what appears to be a complete response to chemo and Herceptin / Perjeta, there is a risk of false negative associated with having sentinel biopsy that isn't present with those who have surgery first. My surgeon said that clinical trials are underway to determine if people like me need the axillary but I don't qualify on a technical point - having AC after surgery. Many centers are participating in the study and many don't do neo and adjuvant so they need to keep it consistent. That said, she would go ahead and do sentinel if I wanted, but told me I need to be able to live with the burden of risk of the false negative. I really don't think I can do that emotionally. So, here I go. I need to hear positive stories from anyone who's had ALND and done well. I also am wondering if anyone uses the Solaris Tribute night arm thing and if it can be used to try to ward off lympedema etc. I am, quite frankly, cheesed off that I will have a lifelong reminder of BC. I know how shallow and selfish that sounds, but I feel cheated. I also strongly believe that all nodes rmoved are going to test clear, but the peace of mind is what will come of it. It's just another slap down from cancer. Okay, pity party over. Looking to hear from others. Thanks! Linda
0 -
And, Rosie, sorry to read about your rad experience. I truly appreciate all of the PM's you've responded to, to encourage me regarding ALND. I hope you get relief soon!
0 -
Linzer... "peace of mind"... worth it all. On the flip side... if you didnt have ALND..and later had spread.. you would kick yourself over and over.. peace of mind... ( repeat to self as needed)
0 -
Linzer, I think Psalm hit it on the head. Peace of mind is worth the permanent reminder (which will also remind you that you beat the sh*t out of cancer!).
0 -
thanks! Yes, peace of mind is so important. Have either of you had issues?
0 -
I have not... other than unclear margins first surgery! Healing well... waiting to find out my next step in this journey.
You mentioned you didnt want a life long reminder... I look at that differently... my scars, etc.. will just be a reminder of what I have been through, overcome, and become stronger because of !! Dont let this get you down.. and post op management / prevention lymphedema is certainly an achievable thing.. I've been a nurse over 20 years and met many ladies post mastectomy.. (at time I met them they were several years post op) and our knowledge/ treatments have come so far!! You are going to do just fine. I'm not sure about swelling immediately after surgery, but don't think that's the way things will always be.. I think the sleeves help a lot . Your surgeon should be able to give you expectations. And I am sure a lot of ladies on here can give you great guidance!
0 -
Linda,
You might want to consider getting a second opinion. I have not had a ALND, so I can't speak to that. I just think that since you are making such a big decision regarding your treatment and don't feel comfortable with the info from your surgeon, that you might want another opinion.
In my case, the MO, RO and SO all informed me that since my sentinel node was positive, my treatment plan would be the same as if more nodes were involved. The additional risk associated with the removal of more nodes was not worth any information that would be obtained. I do not know whether this is applicable to your case, but thought I would share it with you.
Wishing you the best!
0
