Tampa area BCO sisters get togethers

Lee7

It's scary how many medical people don't seem to know what Lymphedema is or if they do, they seem to dismiss it.  Even my surgeon was adamant that her patients didn't get it and I sure ended up with it.

The company Lymphediva made a sleeve that was bright bright yellow with lots of big warnings all over it in red and black just to wear to the doctors or hospital . I thought the design was a bit overboard but after hearing what happened to you, maybe it's not.  I think GalSal got stuck too during one of her surgeries. 

I'm sure you'll be glad to get out of there soon. Hope you can get some good sleep tonight and get to go home tomorrow.  

Galsal

So glad that the nurse is helping, Ameron!  Yes, I had needle in the bad arm when it wasn't supposed to happen.   I can say that it was during the very long surgery and was done because of the complications during surgery.  Most thankfully, I only had mild swelling for a short period of time after.   Any surgery since then I insist on a special wrist band or write on my arm no needles no bp.  I'd had the band on which had been removed during surgery.  That's why so many write in marker on their arm flesh no bp or needles on this arm before going in for any procedure.  

I'm so very thankful that at TGH the Nurses there KNOW about not using an arm which had lymph nodes removed.  Actually, this last time the Nurse was looking towards my feet when she was getting ready for the IV.  She'd assumed that with a BMX that I'd had nodes removed from both sides.  

jbokland

HI Ladies,

Popping in from Orlando!  I would love to drive over for your next get together if you have one!

Lee7

jbokland, welcome!   When you say expat in Sydney, I assume you mean Australia? 

I always wanted to visit there.   

jbokland

yes!  I was living in Australia when diagnosed and had to return to Zorlsndo for treatment 

lbrewer

I am trying to locate Orlando women who would be interested in joining an exercise class through the livestrong foundation at local YMCAs. Any help is contacting orlando cbp ladies would be greatly appreciated!

jbokland

oooh. Count me in! 

SpecialK

lbrewer - PM ucfmom, she is another Orlando person I believe.  I know her from the March surgery thread.  I did Livestrong here at my Y in Tampa, it is a great program.

Lee7

Wishing everyone a fun filled July 4th!   

Jmo06

Hey sisters can anyone recommend an oncologist at moffitt, feel free to pm me if dont want to discuss on board Thanks to responses i got so far!

FL_sunshine

I am at Moffitt and I love my Oncologist AND my surgeon.  Both lovely ladies who are knowledgable and personable.  My Oncologist is Roohi Ishmail-Khan and my surgeon is Nazanin Khakpour.  Feel free to ask if you have any more questions! 

Jmo06

Thanks! I see in your sig that you are a cold cap user, how is that working out for you. Any other tips for moffitt you can give me. It seems like Moffitt offers so much, I want to make sure Im using all of their resources. Mom should be starting chemo next week. Thanks again! 

FL_sunshine

Moffitt is great because they are a cancer center, so that's all they deal with.  It does get frustrating when you have to wait a long time for some appts, but there are so many patients there it's probably unavoidable.  I haven't used many of their resources.... they do have support groups.  The cold caps are working, I have done 4 out of 6 treatments and I still have hair.    

Galsal

This isn't about BC but I know someone in this group has information.  On Friday I saw a Dermatologist about trying to do something about the Rosacea in terms of redness and acne, in addition to handling the skin discoloration.  Basically, I should have Intense Pulsed Light treatments which should be the starting point.  Without having this done and creating a good base, there's not much reason to go through finding a good skin care regimen.

So, is any one able to recommend a practice or spa that does exceptional work?  Of course it wouldn't hurt it the cost wasn't major pricey.  I'm shopping around already.  Yes, they do it at the Derm's office.  I'm checking all my IPL options before committing.

Thanks!

Lee7

Hello! Hello!

October is almost here again, and  I'm still eating cheesecake.   WooHoo!

 

 

 

Galsal

mmm....cheesecake!!!!!   exchange surgery is scheduled for 10/23.  HOORAY!

DLL66

Yay, GalSal! Great news! Cheesecake does sound good...

SpecialK

galsal - yay!  I know it has been a long time coming - so happy for you! 

Also, yay for cheesecake!

Lee7

Galsal, yay, And wishing you a very speedy recovery!

Jmo06

hey ladies do you know of any good wig shops in the area? Also have you attended look good feel better class? what did you think?  

SpecialK

Jmo - I got my wig at Magnolia's at Moffitt, but in hindsight I should have tried wigs on there and then bought online - would have been less expensive.  I had pretty long hair prior to chemo so I had my hair cut off short before and sent the ponytails to someone here in Tampa (www.hatswithhair.com) and she made me a thing called an "underhair" out of my own hair.  It had a fabric top and the hair was attached just above the ear level.  I had to wear a hat with it, mostly fedora style ones, but I also wore ball caps, and it was much more comfortable than a wig - cooler and less itchy.  The woman who makes these has both human and synthetic hair in stock if your hair is not long enough to make one.  I did attend the Look Good class, but was underwhelmed - the instructor was really focused on making a turban out of a t-shirt, not so much on helping us figure out how to draw on eyebrows or how to disguise the fact that we had no lashes, lol!  I think the class is as good as the instructor, so it is a crapshoot.

DLL66

If there is a Silky Beauty Supply near you, try them. They have a large selection of very reasonably priced wigs. There are a couple in the Tampa Bay area that I know of.

Jmo06

Thanks SpecialK and DLL66 . Mom got her first one at moffitt too and we also noticed they were overpriced. We were looking to get her a second look also a place to get those pre tried head scarves we got two there but thinking might be able to get a better deal, but not sure where they sell them locally.

SpecialK

Jmo - look at these - they are really well made - I bought one during chemo, and a friend bought several.  The company is in Sarasota I believe, but I ordered mine online.

http://www.4women.com/

 

jbokland

I bought mine from a costume shop in Orlando that caters to drag queens. great experience with talented fitters! Good luck!

MondaysChild

I bought mine from Custom Hair on East Busch Blvd. While I did not get a custom wig, they did put a lot of time in the advising and selecting a wig for me and then personalizing the styling of it by the shop owner.  I could have purchased the same wig online cheaper but would have not gotten the customization skills.  I had a "good hair day" every day with that thing and still miss it three years later!

SpecialK

I took mine to my hairdresser and she cut it a bit to more closely resemble the style of my hair at the front.  My wig was also the versafiber type (Racquel Welch) so was tolerant to heat styling - you could blow dry it and flat iron it.  I never tried to use a curling iron because I was concerned about melting it, but the flat iron worked great.

Also wanted to add that they do have free wigs at the gift closet in the ACS Hope Lodge, right next to Moffitt.  You just have to fill out some paperwork.  They also have hats, scarves, prosthetics, etc. 

Jmo06

oh nice specialk thanks! 

Jmo06

mom found a cute work wig by wigs by Abby in largo place was charming manager was very helpful

Galsal

That's wonderful to hear, Jmo.  Also there is the program through the American Cancer Society of Look Good Feel Better.  The one I attended, there were turbans and scraves and wigs for the attendees.  This is in addition to various products to help Ladies feel better about themselves.  The woman who facilitated mine was a Hairdresser as well as a Makeup Artist.  She'd offered cuts where she worked to those needing to deal with cutting their hair during chemo.

Look Good Feel Better program of American Cancer Society