Alone - recent double mastectomy

Circles

Where is my TAG?

B123

Theyaregone: I just saw your post, I am so sorry for everything you are going through but am SO glad you found this sight.  Never feel that you are alone, thank god for this sight and for all the many friends we have here to support one another.  No one really knows what we are feeling or going through but us.  Have faith and know that each time you put this computer on, we are always there to help you and each other.  Things will work out, it just does... MANY HUGS to you my friend.. xo

theyaregone

MLB - what the heck are chest creases?  Sounds too funny to me.

theyaregone

Circles, investing in a pub?  Oh now that sounds like fun.

Finished my physical therapy yesterday.  I sure will miss having someone to chat with a couple times a week.

Monday I start sewing my quilt group again.  If been with them a couple years and am still working on the same quilt!  Maybe this is the session I get it done. LOL

Just came in from squeegying and vacuuming the water out of my garage...today is unusually warm and snow is melting - it doesn't have anywhere to go so I guess my garage is the obviously place.

Last night I went to the support group meeting again.  I have to shut-up.  Seems if I  didn't run my mouth nobody would say anything!  The lady that leads the group didn't show and there was only 4 of us.  Maybe next time I will tape the chops together!

What's everyone up to?

Circles

Hi TAG!  What am I up to?  Gearing up to go run my tail off behind the bar at the pub. I tended bar for over 10 years and look forward to going back to work.  I am sick of worrying over cancer and it is just time to move on with new adventures. 

Don't be quiet at your support meetings.  Sometimes what you say helps those who listen because they don't know what to say.  No tape, girlie!

Moonflwr912

I am with circles on this, TAG- If they don't speak up, you say what you want- either they agree or they don't, but at least you get the benefit of venting!  Works for me!  LOL

Circles

TAG and gang, this will make you laugh.  My last bar job was lost because they lost the building to road constructiion.  Long story short, I was getting older.  I applied everywhere and they all called me Mame and of course I never got a job in the field again.  Here I am, many moons later, having to open my own pub to give myself a job!  giggles

Moonflwr912

Go for it Circles!  Self Employed in a big way!  LOL Love that!

Myleftboob

TAG

LOL.  Chest creases are well let me explain.  While I'm only 5'4" My boobs were a very large C cup.  Putting on a few pounds, well 20 to be exact (although well distributed LOL), and being a side sleeper, I noticed over the last couple of years that were my boobs were squished together when I slept, where the cleavage meets at the chest (sorry met) 2 lines would form, like 2 wrinkles LOL!!  No matter how much cream I slathered on nothing helped.  I thought I was doomed to get this corrected either by laser or some kind of peel.  Since my MX though because there aren't 2 boobs creating cleavage, the lines are all but gone!

Am I making any sense?   I have to say that similarly, my neigbor had a lumpetcomy and radiation 2 years ago.  To keep the burn down she was told by her MO to slather aloe and Glaxalbase (spelling?).  She said since she always poured to much she would just rub it on her hands, chest, whatever.  Her's disappeared too  I remember her showing me.  Even though she still has both boobs the radiation together with the cream must have had an effect.

theyaregone

Circles you are awesome!!!!  Lefty - you crack me up!  Too funny.

Now onto my newest weird thing.  My lymph node was taken from the right.  My right hand and lower arm has been driving me nuts.  Especially between my thumb and pointer finger as well as my wrist.  It's swollen and the muscles feel like I have been lifting weights!  I just noticed that I have some feint pitting near my inner elbow (the crellbow).

I guess I have some lymphedema.  Years ago I had this in my leg after radiation therapy.  In that case my leg had to be wrapped from ankle to hip.  How do I take care of the arm?  Can I get one of those sleeves with or without a prescription?  I see my GP in a couple weeks, can she take care of this or do I have to bother my surgeon?  Boy I hate bothering people.

Myleftboob

TAG

Just checked in here and saw your post.  Either your GP or BS can get you a referral to a Lymphademia specialist ASAP.  In the meanwhile, het you arm elevated above your heart right away supported by alot of pillows any time you have a chance to sit down  You likely already know this. 

When I had my drains removed about 10 days after MX, my arm started aching in 2 spots.  I thought I had 2 pinched nerves, really hurt, went to see my chriropractor, he was the one that addressed LE, not once did any of the nurses, doctors no-one, I was kind of pissed!  I told my surgeon so to, said "why did I have to pay to see a Chiro when this should have been addressed by SOMEONE??!!  Anyway thank God for my DC, love him.  Its all good now but I am very aware of the risks. Another helpful hint is if you can, raise your arms straight up and open and close your hands 20 times.  Also seems to get the fluid moving.

Binney4

Theyaregone, please don't wait to get help with the lymphedema. Any doctor on your team can give you a referral to a well-trained lymphedema therapist for evaluation and treatment. It's no trouble for them, so ask away. Here's how to find a fully-trained therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Recent research has found that prompt treatment of lymphedema at the earliest signs of it can halt the progression and also make it much easier to manage going forward. Also, waiting for treatment allows stagnant lymph fluid to sit around in your tissues, where it's unfortunately great for growing bacteria and starting serious systemic infections.

If you've caught this early enough, your therapist can help you move quickly to a maintenance program of compression garments, exercise and skin care. If it's progressed further than that you will need the layered wrapping for a while to help bring down the swelling before being fitted for compression garments. Either way, the sooner you start the better you'll be able to control it.

Here's a webpage with information about what to do while you're waiting for a therapy appointment:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm

Please feel welcome to come lurk or join us Sisters of Swell on the "Lymphedema" forum here at bc.org. Lots of caring and knowledgeable ladies there to share this part of the bc experience with.

Gentle hugs,
Binney

theyaregone

Interesting because I called my surgeon today and he said it's not really possible with having only the 1 node removed.  Just told me to elevate my arm and see my doctor at my regular appointment next week.

My hand is swollen and it really hurts.  When I press near my inner elbow it dents.  So I think I have this and he says I can't.

Now it feels like it hurts bone deep.  Know what I mean.  Oh well, I guess I will just keep it elevated as much as I can until I see my doctor on the 8th.

Binney, thanx for the info.

Leah_S

Theyaregone, it definitely is possible to get LE with only one node removed. The symptoms you describe sure sound like LE to me.

If your surgeon won't refer you to an LE PT, go to your PCP. Somehow you've got to get there, because waiting will only let things get worse.

Best of luck.

Leah

Binney4

Leah, yes! Theyaregone, I have lymphedema on my cancer side with only a single node taken, and on my prophylactic side where NO nodes were purposely taken. Any surgery to the chest (even breast reduction without any cancer) can cause scarring and fibrosis that can result in lymphedema. One of the problems we have is that problems of the lymph system are not taught much in our med schools or nursing programs, so we have to be proactive about getting the care we need.

Here's an information page especially for doctors (written by a doctor who has lymphedema) that you might want to copy off and pass along to your doctors:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

Be well!
Binney

Circles

Oh no!  Please have it checked out in person! 

theyaregone

I called my GP this morning and just came back from my appointment with her.  She too said that it is highly unlikely to have lymphedema with only 1 node removed.  I think they both think I am nuts. (my surgeon too)

Anyway, she is scheduling an ultrasound to rule out a blood clot and scheduling me to a lymphedema therapist (if she can find one).  Years ago we had 1 in the county and she has since moved.  No idea if there is anyone treating lymphedema.  Ahh the benefits of living in the sticks!

I'll keep you all updated.  Boy, where would I be without you all?????????

Binney4

Theyaregone, that sounds like a very sane plan on your GP's part. Good for her for doing it despite her reservations!

Here's a directory of graduates from Klose LE Training school: http://www.klosetraining.com/TherapistDirectory.asp

Enter "Maine" in the proper place, and click on "search", and there's a list of several dozen Maine therapists in a whole bunch of towns. Maybe there's one near you? If not, pick the closest one and call her up and ask her if she knows anyone closer.

(Living in the sticks in northern Maine sure sounds good to me!)

Keep us posted!
Binney

Moonflwr912

Oh, TAG- I am glad you got help- even if its not Lymphedema- a blood clot is no better- at least your GP KNOWS something is wrong and will at least figure out what it is.  Good luck Dear!

Ginger48

TAG- I also got lymphedema and only had one node removed. My GP also checked for clots and I did meet with skepticism that I could have LE but it turned out I have it in both arms and in the breast area. So do not give in; unfortunately it is up to us to educate our drs about this possibitilty!

theyaregone

I had the ultrasound today and the technician said I didn't have a blood clot but will have to wait for the "official" word from the doc.

Binney - thanx so much for the link - I found a name that is only about an hour from me.  Now hopefully the list is up to date and she is still here. I will give the info to my doctor if she isn't already aware of her.

I've said it before...."Where would I be without you gals?"

I also went to a different foob fitter yesterday because the first one I went to kept telling me my items would be in and then when I checked with her, she never even ordered them!  I also heard through the grapevine that she has been awful to deal with.

Supposedly I will look normal before the end of next week.  She also told me a lot of stuff that was given to me by the other lady as misinformation.  Like I couldn't wear my foobs in the pool and I had to order a special set just for the pool.  Now I realize that she was just after more money.

The first alarm was that the lady said she ordered my camisole I was supposed to wear after surgery and here I am entering the 6 week mark and she still hasn't gotten it for me.

Well...here I am saying something negative and I swore I wouldn't do that.  On a positive note, I found a nice lady that will be fun to work with.

Blah, blah, blah I am saying a lot of nothing and should probably go back and read.  I'm just too lazy tonight LOL 

theyaregone

Here I go - another dumb question.  I have been seeing a therapist for over a year.  I never miss an appointment.  I have suffered with major depression and I mean major!!!

I saw her today and realized that I haven't cried in weeks.  I don't feel depressed anymore either.  Could this have something to do with the breast cancer?

Because it is gone - did it take the emotions with it?  I am just wondering if this is the reason I feel so much better - emotionally?

Deirdre1

Theyaregone:  I think it is more likely that your touching base here has helped you a great deal and because you don't feel alone anymore you are doing better... one of the (many) nice things about breastcancer.org!  Keep up the good work!  Deirdre

Circles

Friends make a world of difference!  I'm so glad to be here with you. 

 We passed on the pub.  Sticking to the rental properties instead.  There goes my job, lol!

theyaregone

Oh no!  and here I was hoping to live vicariously through your PUBdom!

I too am so glad to have "met" all of you!!!!

Oh oh I almost forgot - today I get my foobs!!!!  Bring on the D's!!!!!!

theyaregone

What is wrong with some people?  I got my fake boobs (trial) yesterday and showed them to one friend.

Last night I joined some people at the VFW for some cards.  I was last to arrive as usual.  Can you believe this girl had the nerve to announce to everyone that I got fake boobs!  So I played along and asked everone to compare the 2 and tell me which they feel looks more real.

I didn't want to play along but I couldn't let this gal get the best of me and know that I was angry with her - that she got to me!

I am so mad that I did that.  Everyone laughed and had fun with it and that gal was very closed mouth because she didn't get me (as far as she could tell).  Dang it I wanted to slap her for sharing something so personal with people I only met once and didn't even know their names!

Sorry for saying this but, "What an ass!"

I felt bad but everyone there (men and women) think I am such fun.  So much for them respecting me.

AmyIsStrong

TAG - I am SO SORRY that happened. You put a brave face on it (good for you) but it must've felt awful.  Is this the same borrowing-the-car friend? If so, she is NOT a friend. True friends do NOT try to 'get' you. They love & support you.  This woman does not fall into that category.

Would it be possible to say to her (now that it is over) - "I didn't appreciate what you did - do not mention my medical situation again" or would it be better to just let it go?  In the meantime, I think you NEED to have a snappy comeback worked out in the back of your mind so IF this type of thing happens again, you will be READY. The worst thing is thinking of all the stuff we wish we had said, afterwards when it is too late.

One of the best ones I've heard is "Yes, I had cancer, but it can be cured. You are rude and there is no cure for that."  That would 'get' her back.

Again, I am so sorry. Try not to relive it over & over again in your mind. That is really letting her win.

Love to you TAG,

Amy

Myleftboob

TAG

What a low class peice of poo!!!  I don't blame you for wanting to slap her.  I'm glad you didn't however.  She sounds like a total attention whore to me. She was definatley trying to goad you but for what reason?!!!   And then to be closed mouth when she realized she didn't?  Some people blow my mind,   Taking the high road was the best thing you could have done!! 

theyaregone

I feel better knowing that I did the right thing.  I will not lower myself to her standard.  That's just being mean.

Yes, this is the same "friend" but it is the only friend I have.  I don't know anyone here.

I did join a group last night.  It is a group of women that meet once a month to do crafts and community service.  I also joined the VFW auxilary.  I could have joined the VFW (being a Veteran myself) but I want to be around women.  So hopefully with these 2 groups, I will meet some nice ladies and friendships will develope.

I can't seem to spell today LOL.

Thanx for being my ears and friends.

Moonflwr912

Yes, TAG, you did good.! I had something kinda like Amy's reply to use, " I know I am fat, do you know you are rude?" I used that to some college boys on the beach, they turned red. But to repeat, She is NO friend. Do you really want to waste time on her?