Calling all TNs

christina1961

Lovelyface, I'm glad to hear you are doing well!  I have missed your posts.

Brenda, It's great to hear from you, too.  I am also struggling with a sense of apathy.  I don't want to do anything right now that involves much effort and am really sick of working.  I can also relate with the scans. My onc doesn't do follow up scans but he does chest xrays and I have put mine off since the middle of December so far.  I hate the scan anxiety so much.  I think I will have time this week to finally get it done.

kathyrnn

Finally at my house, so I have a real computer

Lovelyface - wonderful to see you.

Thanks for that info Purple.

Congrats Minxie and you go girl and take that trip!

Lauren - hope you have answers soon.  Feel better!

NavyMom - Skype is the greatest.

Bak - " I don't do what I don't want to anymore".  Sounds pretty healthy to me.

Cocker - yay to Port going bye-bye.

Titan - congrats on 4 years.

Now, remember I'm poor with my computer skills, but I'll see if I can post the "poker Slut".  There's something in the picture that all my CA sisters will appreciate.  Before chemo, I had the most wonderful hair.  It was wavy, which allowed me to either force it to be straight, or force it to be curly.  (Curly was really easy.) When my hair grew back it was bone straight.  (No complaints, it was good to have hair). This week I was able to make it curl for the first time!  Sounds like a small thing, but it was a reminder of returning to normal!

This my pre-chemo picture:

This is the "Poker Slut" (nowhere as racy as Cocker thought) Damn, after seeing the picture, I REALLY can't wait till I can have a face lift.  Starting to do the "turkey wattle" look!

 

And here is what I really look like!  Bets on who figures out who I am in the picture.

Kathy I can choose to cry, or I can choose to laugh. I choose to laugh!
Dx 5/10/2011, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR-, HER2-Surgery 11/08/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)

liv-

gorgeous pic and you look great now and before.

good on you looking forward to face lift  and saying it..

xx

kathyrnn

liv, the only reason I haven't done it already is that I care for my elderly Mom, and don't feel I should take a risk on surgery that is unessesary while she is alive.  When Mom's gone, I'm getting my boobs fixed and getting me a facelift.  Mom, laughs and tells me to make sure she's buried properly before I rush off to the surgeon!

jenjenl

Tomorrow is treatment #3 for me - the 1/2 way point of chemo.  I have a nasty cold that I am fighting so hard.  I have a feeling they might postpone tomorrow by a few days.  My DH is making a wonderful dinner either way - I love being married to a chef   He made me homemade chicken noodle soup on sunday.  I have about 4 containters left!

Any feedback on eyes watering?  I suspect just a SE. 

Have a good night.

Tazzy

jenjen:  taxo-tears... yep just another SE.

mags20487

jenjenl...yes the tears are normal...mine lasted over a month after chemo was done.  hang in there

Mags

bak94

Oh yeah, the tears! Mine also lasted months after finishing chemo!

bak94

Kathy-you look great! I love the darker hair. Sounds like you mom has a great sense of humor:)

Hopex3

Jenjen..I had watery eyes all the way through chemo. Usually my left side. Chicken soup sounds great. My DH is not a chef but an excellent cook and is making me all kinds of foods.

Cocker_Spaniel

Hi Ladies

Titan - another three months and our snow will come.  Not looking forward to it at all except from a picture post card aspect from the window. When does your spring start. I will envy you again.  

Lauren - hoping you are feeling a lot better now and will soon be home again. Just hang in there. Sending huge big hugs.

NavyMom - glad to hear you have finally caught up with your son.  He works such long days bless him no wonder he is tired. Know exactly how much you love and miss  that young man but hopefully it won't be long before he is home again. 

Bak - I can't miss those boobs cause unfortunately mine was never like that in the first place but I am beginning to miss my lefty a bit now. The prosthesis is so heavy and uncomfortable in this hot weather.  I also go through those depressive days such a lot now where I can't be bothered about things and don't want to plan anything.  Just scared I guess of it returning.  I used to love my job but I just don't care about it any more. I'm sick of typing about sick people.  I find I read the cancer ones right back to when they were diagnosed to see how long they have gone with it.  Not healthy I know but I can't seem to stop doing it.  I guess I just want to see if I will last as long as them.  I am dreading winter cause its so bloody depressing and sometimes nothing seems to make sense any more.  I also hate the scans not that my onco does them very often. 

Kathy - great pictures, great lacy top and great hair.  Jeez I wish I looked like you.  My hair is short still, straight except for the ends at the back which curl  and silver.  I used to have wavy aubumn hair so god knows what happened. I don't suppose you were fats domino in that picture.  I don't know many american artists. 

Jenjen - yep taxol tears. I still have mine even after all this time.  The only reason I like the lingering side effects is I keep thinking that the treatment is still working for me at least hopefully.

Where is my OBXK lately.  Hope you are ok Karen.

Have a great day ladies.  Hope I haven't depressed any of you.  Sending big hugs. Annie

   

     

OBXK

Annie - hugs.

christina1961

Sending you hugs, too, Annie! 

bak94

Oh Annie, your job sounds rough, probably does just bring you back to everything you went through, and are going through. I don't think I could do that. I also get tired of wearing my fakes, I never thought I would do this, but I just throw on a baggy sweatshirt and leave the house. I run around the house and yard without them and I just don't really care. What is really sad is that since I quit my job I don't think I have put on any make up, even to go out of the house! There was a time that I would not step out the front door unless my hair was perfect, clothing good, and makeup on!

Hi Christina! I really do need to make an appointment.....Just can't pick up the phone. I have been seeing my primary doc, so that counts a bit right?

Loafer

Hi ladies -



Finished chemo 4 weeks ago and still experiencing muscle ache is thighs and arms. Seems to get worse by end of day. How long does this SE last?

Tazzy

Annie:  hugs

xx

Titan

Oh Annie...sorry your job brings in your face all the time...thats not easy I'm sure...remember you are YOU and not them....I've never envied our oncs and nurses to deal with this every day...they are special...and so are YOU..don't forget that...

Loafer...I had taxol which I think is similar to taxotere..so yeah..you will have the aches and pains in your legs...for awhile....maybe a couple of months or so...I guess I would go a week and think..ok..is it better now than last week..and usually it was...I know I yammer alot about walking and exercise..but have you tried walking a bit?    sometimes a little movement gets the kinks out.

That said...sometimes if I sat too long I had a hard time standing up and had to walk to get over the pain...getting out of bed in the morning was the same thing...I still can't sit for too long...have to move around alot...the same with riding in a car...I need alot of breaks..

OBXK

Kathy - I love your photos!

Cocker_Spaniel

Thank you, you wonderful ladies for your support and love.  I must admit I am finding it extremely hard because now they want me to talk to people going through it and although I can do this I am hardly out of the woods myself and I find that bit  hard especially if they are TN and then going through all the chemo with them, it feels like I am still on it myself.  Still I guess if I can help them even a little bit it might put their minds at rest.

I get pains in my legs too Titan but I have put this down to my age.  When I get up from sitting sometimes one of my legs is numb and it takes a few steps to come right.  I've probably got OA as well by now just to add to my woes. 

On a lighter note its still lovely weather here so thats something and there is only two days of work left.

Have a good day ladies, keep warm and thank you once again for all of your support. Annie.        

    

liv-

hello cocker -i notice a lot of us the last 2 weeks are a bit all over the shop, cried myself stupid on saturday for no reason, wasnt feeling said or in pain just lost the plot.

guess we forget that this demon takes so much out of us and i think we forget that even prior to bc we had good and bad days but now with bc its all so concentrated.

so with that i really hope you are coming through and the darks are passing.

luvs

xx

OBXK

Annie - if you are not up to talking about your experience yet - don't do it. I was asked to speak at a fundraiser right after my 1st treatment ended. I couldn't do it. It was all too fresh.

XXXOOO

jenjenl

I had a little arguement with my MO - I asked when I would have my next scan, he indicates that he won't do any blood work or scans unless I have symptoms.  I feel he has no preventative measures lined up.  Not that I really want to have scan anxiety.  It ended with me saying I didn't agree and whatever and him saying you just don't like my answers.  We actually have a good relationship/partnership but all that really pissed me off.  I was crying even before going to the doctors office yesterday.  Very emotional this time, not sure if it is bc it is the half way point for me or what.

Headed back for my daily fluids and the bone pain shot...boo.

gillyone

jenjen - many MOs feel as yours does - no scans without symptoms. By blood work I assume you mean tumor markers? I understand you feel worried about this, but when you say you feel he has no preventative measures in place, remember that scans are NOT preventative, they can only show what may or may not be there. It is hard to accept, but I have read over and over on these boards that finding mets earlier rather than later (which is what you are aiming at with scans) has no bearing on length of survival. But at the same time many people like the reassurance that scans can provide. No doubt lots of others will weigh in on "to scan or not to scan" and there is no right or wrong. It is something you and your MO have to work out and be comfortable with. For myself, I am 3.5 years out from diagnosis and have not had a single scan then My MO is in the same camp as yours - and I am happy with the situation.

natL12

Glad to read here that "chemo eyes" AKA tears sometimes go away on their own.  My opthamologist told me he would do surgery on the tear ducts to help the situation when my blood tests are good.  I'm putting that off as long as possible.

Putting off ANY surgery as long as possible.  Also putting off my overdue colonoscopy. If it showed cancer cells, I don't know if I'd have the strength (emotionally) to go through chemo again.  Might just give up and die. If my DH saw that comment, he'd have a real problem with it.

So many people have no idea what TN is.  I don't bother to explain, just put on a happy face for them...but it's hard not to feel NEGATIVE (pun intended) about the whole situation.

SherylB

Hi all,

I am going to post this message on many of the threads please help me share it as I found out about it here.

www.GoodWishesScarves.org

They will send a free head wrap/scarf. It took about 4 weeks but the wait was well worth it. I like the one they sent me better than any others I have. They even have a little fairy with wand in crystals on the edge of one of the tails. Too cute! They do accept donations too of course but it is absolutely free even the S/H is paid by them and they send a best wishes card signed by the staff. Just overwhelmingly generous and compassionate.

Thanks, Sheryl

KSteve

Jenjen - I can tell you that his answer to you is very common among oncologists, especially when dealing with TN.  At one of my first 6-month checks, I had one area of my blood that was elevated (December 2011).  Due to this, he ordered a PET scan.  So I had the anxiety of the scan, and the wait until results, only to find everything fine (thank God!).  He no longer does blood work at my 6-month appointments.  Not specifically because of what happened in my case, but because of findings in national breast cancer studies.  Most likely, our cancer would present with other symptoms if it reoccurred, which would send us to be checked, not because of our blood work.  I am definitely on board with that approach.  Less stress is good!  It just takes some getting used to.

Kathy

LuvRVing

Sheryl - I received a Good Wishes scarf in the summer of 2010 when I was doing DD AC/T.  It really was beautiful.  Last summer our neighbors were having a party and I noticed a lady wearing a scarf.  I found out that she had just started chemo so I got my scarf and gave it to her, seemed the right thing to do.  Now I could use one...maybe I'll just order one.  I think I'm going to be bald for a very long time (brain radiation).

SherylB

jenjenl,

I hate to be a downer but the way insurance is now days if there are no symptoms or cause they won't pay for it. There is very little they pay for prophylactically. Usually mammogram and we all know how that worked out and generally a gyn check-up. Ask him is that is why. If not and your insurance will pay get a family doctor to order it and have results to him and if anything suspicious then get a copy to MO or get a new MO. This is your friggin life we are talking about here. Just because he has MD after his name does not mean it stands for MEDICAL DEITY, sometimes they need to be reminded that you hired them.

Sheryl

DorMac

Thanks for the link, Sheryl. I am way past needing scarves as my hair is all grown back now. But it is certainly a good link to provide to the newbies. While there, I also found a link to the Triple Negative Breast Cancer Foundation (http://www.tnbcfoundation.org) - it mentions that March 3, 2013 is the inaugural TNBC Day. It also has links to guides to understanding TNBC, so others MAY want to check it out too.

Doreen

SherylB

Doreen,

For some reason I don't care for the site for triple negative foundation. I don't find it really user friendly and get so much more from the threads here for TN. Glad you posted it though someone else may find it exactly what they need.

Sheryl