2012 sisters

bevq49--thank you so very much.  This is a lousy disease.

If anyone's been reading The Boob you know my particular revulsion to bad customer service.  And, you know, I have said many, many times how fortunate I am to be in NYC where I can get some of the best healthcare available in the world.  But the staff in both the oncology unit and the surgeon's office is just beyond the pale lazy, incompetent, and incapable of any critical thinking.  Period.

Last week I called the surgeon's office for a wholly routine reason: to get medical records sent to a physician for a second opinion (I want to do my due diligence with regard to oncology).  Well, after being on hold for ten minutes, getting shuffled around and getting hung up on, etc., I got in contact with the office manager and he took my information and said he would take care of it right away.  After this I wrote a letter to him thanking him for this asssitance and pointed out the awful attitude of the staff.  I copied my surgeon.

So I call the second opinion yesterday--and it turns out that they never received the records.  Nothing was faxed to them.  I call the surgeon's office.  And they ask me to fax over permission.  When I tell her that I don't have a fax machine I hear, "I can't help you if you don't have a fax machine."  (Just checking: it is 2012, right?) 

I hung up the phone and just cried.  You have to deal with a goddamned disease that is trying to kill you and these incompetent numb skulls don't even try to help you.  I penned another letter to the office manager and surgeon.  I know the surgeon was away this week, so on Monday he'll come back to two letters from me.  I am convinced that no one knows the extent of this incompetence in the office. Even the office manager can't follow through.  And it doesn't differ at any other place, to tell you the truth.The oncology suite is an effing nightmare. All workflow is set up for the convenience of the staff, there is no patient-centered workflow at all.  None of them could think their way out of a wet paper bag with a hole started.

So now I have to add to the nightmare I'm already living and, what, try to find a practice with a decent staff? I mean, how much effing time can you devote to this?  You can only take so much.

As I told my surgeon, if my public service staff treated our clients with even a modicum of the inefficiency and incompetence I have experienced at the hands of my surgeon's office staff I would fire them on the spot.  On the spot!  And I don't serve people who have cancer; I serve scholars who use rare books and manuscripts.

Scorchy - that almost seems to be the norm in oncology offices...great doctors, lousy support staff.

I met with  2 of my docs today (GYN for hot flashes and hot boob, since I was there) and met with my MO - both are concerned that an infection is trying to set in so they're putting me on antibiotics to be on the safe side.  MO also gave me fiornal for my 3 day old headache and said to take one the morning before my next round to prevent this from happening again and the GYN gave me some effexor for the hot flashes.  I swear, I look like i run a small pharmaceutical out of my bathroom!  hahaha

 Had a lovely nap and now that I've had a bite to eat, I may just take another one  

Scorchy, office help in a doctor's office does not get paid a lot. Unfortunately, you get what you pay for. It's kind of like security at the airport. Not very good but again, you get what you pay for..... It's sad though when you're going through enough crapola as it is with this fucking disease. Sorry you have to deal with a bunch of incompetents also. Try to maintain your cool and just focus on what's important. You might never find an office staff that's adequate. Just make sure the doctor's are.

Glad to hear you got meds Firestorm!  I lost patience at 3 and called about the rads clincal trial.  They do know that i will be in the traditional 6-7 weeks of normal dose radiation but they can't get their act together on when.  They think I'll get a call next week for mapping and perhaps start on 9/17..we shall see. Cottontail, glad you will join us.  Everyone have a physical and mental rest this weekend...think we can all use one!

Hope everyone manages to have minimal SE's this weekend.   Find your happy and cherish it.   

Busy weekend for us.   DH is going to chop wood for the winter - we have a wood fire at home.   I will go up the bush with my camera and book.  wont be able to help him this time but will be nice out in the open.   Just getting ready to go and view a new camper we are in the market for then off to dinner somewhere... not sure where yet.  

Peace and love to everyone xxx

Well the camper didn't turn out to be the 'one'.... but that's OK there are plenty on the market.   Had dinner at Swiss Chalet... was OK.   New one just opened near us.

Off now to bed and watch some tv before an early start tomorrow... .all about the R&R stride

Everyone enjoy your weekends.

So I never got to bread making today.... I left pilates feeling really good. My instructor welcomed me back with a big hug, and then asked the class to welcome me back following my surgery. I felt self conscious, but ten minutes into the class I was so hot I took my little cloth hat off. A couple women cancer over afterward and told me how great I looked, although they "different know what you looked like with your hair". Anyway, I left feeling triumphant (although out of shape-ouch!).



So, I should mention my energy level all day was really bad, so I didn't really eat anything except a bowl of cereal. By the time I got home from my class I was experiencing the worst neseau I have had in years... It lasted until 1 AM. ... So there was no bread baking at my friends place this morning as I was sleeping.



I have to be honest ladies, this past week sucked. I have been an emotional mess and really stick in my head about how I look. I was watching obamas speech the other night and every tinge the pan out to the audience ask I can do is notice all the women with great hair, out no hair....im HAIR OBSESSED! I miss my beautiful long hair so fucking much I can't say. I think I miss it more then my right breast... Yes, I do, there I said it....I MISS IT MORE THEN MY BREAST! I am trying do fucking hard to be ok, to hold my head up high, to remember this is temporary... But damn it, I'm fucking pissed and I want my hair back now! I font want to finish my last two treatments, I don't want to have been diagnosed with breast cancer, I JUST WANT MY FUCKING LIFE BACK!



I have gone to Gildas Club/ cancer community network and will be joining their support group that meets every Thursday. I am hoping it will help with my desire to isolate and hide out from the world. We shall see. Regardless I'm doing the best I can with what I have, but aren't we all? I'm half way through my treatments already, I Judy have to make it through two more. I've got it easy compared to many... Where is my faith, my spirituality, my strength. Yes, rough week.



Do I have rescheduled the bread date for next week. I am going to my therapist tomorrow, and then having friends over. Sunday is a friend baby shower, and then Monday night I have my Look good, Feel better class, so I'm am keeping myself busy and in the land of the living in spite of myself.



I am now going to read over the least 24 hours of this thread and will most likely have to write another post after that.... But I just wanted to get an update/rant out first. This first will post chemo SUCKS!



Also was wondering in the middle of all this yesterday where mcook is....?

Soya... Thanks. Hugs gratefully received.

They don't call it a woman's crowning glory for nothing ladies.  Don't feel bad about mourning that loss. With luck and time it will grow back, nicer than ever but for right now the bad hair day blues are a song you have every right to sing.  This damn disease takes so much from everyone.  Hairloss is just a crowning insult.  Salt in the wound as it were.  I've been lucky, no chemo so most of my hair is still with me, but with every brush stroke tamoxifen makes it's presence known.  I know what Gallagher meant when he mourned the grey hair in the sink.  Yeah it was grey, but it was a hair!

Cindy~I had seen Gallagher with no hair. He had always worn his hair long before, and I wondered if he had cancer or if just like so many men nowadays, both young & old, he just decided to go bald.

I haven't seen him for a long time. Is he still around?



Blessings

Paula

Gallagher is still around, but has had several heart attacks in the last year and retired from stage performances.  He's my guilty pleasure, when he gets the mallet out and starts smashing watermelons, I'm ten again laughing  hysterically.  Maybe I need to schedule a Gallagher hour every week.

Hello Pinkninja, welcome to the board. I understand why you would feel panicky. But it sounds like you are doing the things you need to do to be able to be there as your little girls grow up. Just keep putting one foot in front of the other with your treatment.

Juneaubugg, it does seem like hair is kind of represntative of the cancer for a lot of people. It's the most outwardly obvious sign of an illness that is otherwise invisible to the outside world. So sometimes it affects the way we feel about ourselves and present ourselves to the outside world. One thing that has really helped me: buying some hats from Headcoves.com and the American Cancer Society's TLC site. Every morning I get up and play around with which hat to wear with my outfit. I feel a like a little girl playing dress-up. It's fun! 

My boss, who has been fantastic through this, has been encouraging me to wear colorful headscarves because she thinks they look stylish and cute. I still prefer my hats though. :-)

A woman who used to have long hair put this video on YouTube about how to wear a headscarf in a way that makes it feel a bit more like long hair. She uses hair ties. I love this method because it is easy, secure and I can play around with it a bit, as if I was fixing my hair.

http://www.youtube.com/watch?v=IaPNix3z-Aw&feature=related

Hope this helps a bit. Just remember your hair will grow back! 

Jpmom and juneau - god your posts about this fucking disease helped me today because this week has been a rough one for me as well! I handled chemo well but now I just want my hair back! Agreed I think I miss that more than my boobs! I know I am only 2.5 weeks out of surgery but I have never been so tired in all my life. My body is so stiff I feel like I have aged 30 years. Will this go away or do I have to live with this:( I walked twice this week and had to take daily naps. I just want to go back to work and stop being in pain! I can deal with a lot but back pain and joint pain has knocked me down so hard.



I have my prescription for hormone therapy and I have yet to fill it! Just another fucking thing that keeps on giving us shity side effects! I am so tempted to take my chances on rads and this! Say fuck it! Sorry I am just so pissed off right now. I don't know why my bf stays w me as I am definitely not a lot of fun these days. Maybe I have slipped into a bit of being depressed after surgery because my positive attitude just went out the window today!



at least I have all you who understand and thank you! When I try and explain to my family how I am feeling they just try and give me advice on what to do. I know they don't understand all this and I try not to get mad but I don't need them giving me advice I just need them to listen.

marian- Glad to hear your surgery is behind you and that you have your sons with you to take care of you.  In answer to your question, my second surgery was called a re-excision.  My surgeon was not comfortable with the margins after the first surgery (too close to where the cancerous tissue was) so he went back in to take more tissue.  For whatever reason (I will never fully know) my second surgery didn't want to heal.  3 weeks after surgery I opened back up.  Eventually it opened completely and my surgeon began a wet to dry pack.  I did this for 13 days with slow results, then they put me on a wound vac for 3 weeks, with great success.  I have been off the wound vac for a week and a half and my wound is almost closed (less than a centimeter).  I am cleaning it and dressing it just like you would a regular cut or brush burn.  It no longer has depth to it (when i started all this it was 3 cm. deep).  So now I am able to finally start radiation (I hope!). 

10 days is a long time to wait for pathology.  I hope you get it sooner.  I actually did chemo before I had my surgery.  The radiation for me is the final step in this healing process.  I hope you continue to heal well from your surgery and am praying for good path results for you.

Hello All. Well I am 10 days PFC and feeling great. I am going back to work Monday after being away totally for the last two months.  I can't stay home and watch the walls any more!  I Met with the MO and BS yesterday and got have good news - the neoadjuvant chemo has done it's job and the tumor has shrunk.  It is almost invisible on the MRI Now!  So I have decided to go with a lumpectomy.  Both MO and BS recommended it based on my result.  I decided I went through the chemo first for a reason and that was to shrink the tumor.  The BS was wonderful and would support me if I chose to do the full MX but he did state that once you do MX you can't go back.  He said if we do lumpectomy now and I am not comfortable or unhappy with the way it looks I can do the MX later.  I do have to have an ANLD though due to positive nodes via biopsy in April. 

I think I am more scared of the surgery than the chemo.  Does anyone have advice on what to expect for the lumpectomy?  The BS gave me all of the information and I have read all kinds of stuff, but I am looking for what it is really like?  What kind of bra will I need when I am done?  Any thoughts on the recovery time?  

 I know that I do not post alot on here, but I am always following and praying for everyone.  I am not good the "posting thing" or at mentioning everyone by name -- until I was diagnosed, I never used the computer for anything other than paying bills at home because I am on it all day at work.  My best to those in chemo and wishing you minimal SEs this week and to those recovering from surgery, rest and get well!    The twists and turns of this journey are what make us stronger!  My MO said it has a been a while since he met someone with such a positive attitude as I have towards my situation, but what else can I do?  We will all make it through this!  I take inspriation from my mother, the strongest woman I know, who has buried two sons, a son in law and my father and taken care of all of them until the end!  God bless all of you!