Calling all TNs

My good thing...

I have a contract on one house and an offer on the other! These are homes in my mom's trust and I am the trustee of the Estate.



I have had such a fear that I will die, before getting this all taken care of.

I just don't feel "cured". Maybe when my energy returns, I'll feel better about it all. I did manage a shower and putting on real clothes today!



Annie - so glad you are back! I know it must have been a difficult week. Now, just don't forget to bring us all with you next time!



Minxie - hugs



Mags - that just sucks! I'm glad you had it looked at.



Hope - thanks for the reminder.



Tazzy - sending good healing vibes out to you.



Born to- wishing you sweet dreams. I hope you shake the nightmare soon.



Loved the pics!



Tooky - I hate to think of you so upset. We're all in your pocket!



Inmate - I hope you get in the trial and that it works like magic! Having a visible cancer, must be unnerving. I admire your humor and spunk!



Big hugs to all!

Ladies, as you know i use humour as a way of getting by.  Please let me share my chemo diary.  this is not too make light of anything anyone is going through just how it was for me

Good morning, steriods are working really well, who needs sleep anyway. I had 1st A/C chemo on wednesday, very fuzzy head on thursday, kept getting things mixed up. Worked yesterday but i only do 9 - 2.30 so not too bad. Didn't dare drive in case fuzzy head came back. Was a bit manic with the steroids and my bipolar, just have to keep on top of that. Had to have all my teeth out two weeks ago due to an infection that wouldn't heal up. So by the end of the year - new teeth and new hair.

Hiya, effing hair fell off this morning - have a cold, fuzzy head. Will have to drink lots of wine to get over the fact - i did not know that my ears were so big. Sinead O'Connor eat your heart out.

Sat, 2 Jul 2011 08:01:43 +0100
Good morning, a day in the life of............
06.20 get up.
Arrive hospital 8am. Solitary confinement. 8.30 ask Dave to leave - he's not helping the nurse. 8.45 get stabbed in back of hand three times - large plastic thing now attached to back of hand. 8.50 drugs administered, through large plastic thing. 8.51 violent reactions to drugs. 8.52 observe doctors and nurses panicking. 9am - 12.15 sleep. 12.15 - 12.30 get pushed round hospital, in a bed, so the maximum number of people can stare at you.
12.30 arrive operating theatre. Nice doctor decides not to put me to sleep - a local anaesthetic is obviously a lot cheaper. 12.35 first operation on arm. 12.55 second operation , same arm- first operation not working.
1.30 - 2pm reverse push around hospital (don't know why it took double the time), back to solitary confinement. 2.10 Coffee and scone. Can't eat scone with no teeth - just eat jam and butter. Good coffee. 2.30 fall out of bed. 2.31 observe doctor and nurses panicking. 2.45 - 3.30 stare at wall. 3.30 nurse turns telly on. 4pm Coffee and scone, same as last time but managed to stay in bed. 4.05 allowed walk around room. 4.08 faint. 4.09 observe doctor and nurses panicking. 5.30 second walk around room, all ok. 5.50 Dave arrives - more coffee. 6pm asked to leave.
6.05 feel faint - put out cigarette - sit at the side of the road while Dave gets the car.
Arrive home 7.30. Drink wine. 10.30 go to bed. Sleep. 04.30 wake Dave - politely request that he removes his puppy sleeping on top of operated arm. Get up.
How was your day?

Hiya, third chemo session last wednesday. Liz over from england babysitting me and the menagerie. Dave sodding about in killarney with his mates at the Ireland BikeFest - tell's me he's working down there. Of course he is - my little darling.
Chickens starting hatching yesterday, so far only one flat one.
Doing the tourist bit with Liz - helps to work through the mania - or not as the case maybe this time. Liz having lie in this morning due to the fact i've been talking her to death over the last three days. I know i haven't seen her for twenty years and she's still here for another week but i'm just trying to get it all in before the after mania crash hits. Sun coming up very pretty at this time of the year. Keep running out of wine, can't understand that at all.
Off on the tourist bit again today - the coast road drive, well obviously not the entire coast (even my mania couldn't do all that in one day) just the waterford bit. Actually, thinking about it, if i don't buy Liz ear plugs i might have to go on my own.
Update on the new wig situation. Wore it at Sinead's engagement meal, thought i'd got away with it - well no-one sniggered or pointed at me. Liz arrives - old photos. Younger brother in drag at fancy dress (god only knows how many years ago) and guess what - yep, same wig. Scarves looking very fashionable again. 04/06/11 Sat, 2 Jul 2011 08:01:43 +0100

A week in the life.
It's not all about me. Dave. Returns from rally Sunday - totally knackered - normal so far. Tells me Mick stopped him from taking his jeans off, again quite normal. Moans that bike is very noisy.
Monday announces he needs a new phone - the one he bought three weeks ago is obviously not good enough. Spends all morning looking at phones on the internet. Decides to power wash bike, now bike won't start - lots of swearing. Cooks BBQ
Tuesday shopping in Callan. Puncture driving into carpark - garage need two new tyres. Home - phone shop about bike - goes and fiddles with bike. Shear off bolt that has nothing what so ever to do with the problem of the loose battery connection. Bike starts, take to shop for bolt repair. Informed, bike noise is cracked manifold also late for its service. Leaves bike in shop. Cadges lift home from Anthony. Cooks BBQ - drinks beer.

Wednesday - goes to o2 shop in town - to buy new phone. Chooses phone, computers down in shop. Goes and buys more beer, back to shop, buys phone. Home. Cooks omelettes. Plays with nice new phone with the latest touch screen. Can't make phone work - lots of swearing, drinks beer. Get phone working.

Thursday, loses everything on phone - reboot phone - go on internet for instructions. Takes me for chemo, sits in car for three hours playing with phone. Buys more beer and Sangria. Home - cooks omelettes. Puts all new ringtones on phone - drinks sangria.
Friday, goes to collect social money in Callan, not all there. Into town to moan in the social. Rest off money will be available next Wednesday. Lots of swearing. Goes food shopping - buys my wine. Home, cleans the entire cottage while I'm sleeping. Wakes me up - back to Callan for gas bottle, my tablets and everything else he didn't get this morning. Home - tells me I have to cook, my arm should be better now. (It was better on Wednesday but don't tell him I told you that). Probably going to drink beer later.
Other event during the week - Passport sent to London for new job application. London loses passport. Kilkenny for passport application forms - home - I fill in forms. Back to Kilkenny for the Guards to authorise. Form incorrectly filled in - Home. Next day back to guards - form approved. Go to Dublin for new passport. Return trip two days later to collect passport. Extra 55euro on top of fee for express. Send passport to London, with expenses claim. Receive new expenses claim form from London. Go to Kilkenny to get all expense receipts scanned, send to London. Probably going to London Monday/Tuesday - money from social not available until Wednesday. Lots of swearing. I'm off to destroy dinner and open a bottle of wine.

It is now official, I am becoming a Witch (contrary to popular belief I have not been one all my life). It appeared on my finger at the beginning of the week. So, I am now doomed to the daily practice of checking nose and chin for further outbreaks of the dreaded, dare I say it - WART.
Obviously, I checked first with the ladies on the internet forum and they unanimously agreed with me. Then I went straight to the hospital but after a great deal of interrogation the nurses and doctors would not admit the fact, Chemo can cause WITCHNESS. Now, that is bare-faced lying by the medical profession (gits, the lot of then) to stave off mass panic among the general population.
Some of you may be thinking she's over reacting. However, I present further evidence. The Bat. He, or maybe she, flew in Tuesday evening and settled down quite comfortably on top of the wardrobe. My little dog barked up at the bat so attracting the attention of Dave's puppy.
At this point, for those of you who haven't met said puppy, he's a cross between a Pitbull and a Rottweiler, more commonly known as a Pitweiller. He's fifteen months old and weighs approximately five and a half stone. Name - Gunnar. Meaning - Bold Warrior (tuetonic). He loves Dave and sits with him on the settee, occasionally he sits impersonating the gargoyle I have in the front garden. (Gunnar that is, not Dave.)
Anyway, Gunnar can fly - quite spectacularly considering his size. Now, Bats as you probably know have inbuilt radar navigational systems - Gunnar has not. Which can and in fact did present a slight problem with his landing abilities. He hasn't got any. The vet said he'll make a full recovery. Nerves of steel and a steady hand, that girl - I would never have had the courage to exam his back passage for any remains of the alarm clock.
Back to the evidence, it's not only cats that are known to be witches familiars. Folklore mentions the appearance of Bats in the bedroom as definite proof of WITCHNESS, especially when they can take on a Pitweiller and win.
The WART fell off yesterday, must have been the cream the vet put on it.
Last chemo completed Thursday.

Thanks to Dave for the brilliant BBQ Saturday night - all Saturday night. Thanks to Mick for surviving the graveyard shift - I've turned into a Duracell bunny. Dave said - demented bunny.
Had a bit of a scare over the weekend, rash and some lumps came up. Hospital first thing Monday, sent me to annoy another doctor yesterday. Possible allergy to sunlight - will keep me monitored. Dave said - should be locked up.
Going back to work tomorrow, I need the rest. Dave maybe going on holiday (he tries to convince me it's work - but I know) to the Cote d'Ivoire. Personally I think West Africa is a bit extreme - the steroids do eventually wear off. Dave said - they bloody well don't.

Lots of love - going to drink wine

30yearold - I love your name.... are you really a mother of 5 or is it just a name?  Please don't ever feel guilty about anything, say anything and everything that you want to say, talk about.  This is our home, we all understand each other, we have faced the worst and some of us continue to live and face the worst thing that ever happened to us.  There are no cares, no worrries, no judgements here.

Proud of myself- I did NOT buy the candy!!

This will probably be my "home" now.  Just want you all to know I've been reading your posts and some of you are so hilarious.  I simply cannot wait to read more (Bernie)!  Well, I found out today that I have lung mets, it's inoperable, and without chemo, I would probably have 3-6 months to live! Wow! I may have bone mets as well. I will have a bone biopsy on Monday, along with the reinsertion of a port for chemo that will start next week. Carboplatin, Gemzar and Zometa. My onc says the side effects are nowhere near what I suffered with A/C and Taxol. I hope he's right. All through my first treatments, my onc kept mentioning the triple negative status, and it stayed in the forefront of my mind.  Now, he still is.  This triple negative business is serious and it sucks!  But oh well, here we go again.

Oh, Stephanie..........just a heavy heart for you.  Please PM me if you want.  I have done some of those drugs and can talk to you about some side effects.  Big giant HUG for you.......love....dawn

Hi Titan, Thanks so much for hosting this forum.  I myself (now 55) am a 7 year Her2+ ER-/PR- IDC survivor. PLEASE ...I need to vent my fear and am seeking advice and wisdom;

 My Mom, 80 years old, was DX TNBC IDC in early July 2012 and had a Lumpectomy, 0/2 nodes. She is doesn't look or act her age which is a bonus sometimes.  She has a lot of Arthritis in her back and that is about the only thing health wise.  She saw my Surgeon and he listened to her wishes about sparing her nipple and not scaring her up too much when he removed her implant and the tumor 1.2cm.  YES my Mom looks very good.  THE Paramount Concern is her looks.  I fear this will be her obstacle for a great recovery.  She has asked every DR we have seen "When can I get Reconstruction" and I don't really want Radiation.  She hasn't even started any Chemo yet.  She hasn't told her GP that she has cancer, so she can still get her estrogen shots!! Should I tell him?  I know there is a quality of life issue since she is 80 (She is still sexually active almost daily with her BF), but I want her to live to see 95.  I recommended she seek an additional opinion with her Plastic Surgeon before she even had the Lumpectomy since she was so concerned.... she blew me off (Daughters don't know anything )  I still haven't had any reconstruction, because of the scaring from the radiation.  I learned a lot from my consults/experience and have been trying to steer her in the right direction.  Even though my/her OS was very good, and spared the majority of her breast (She's still a C+ on that side), she complains he took too much and maybe a woman DR would have been better.  So I found the only Woman Oncologist in my city an got her a 2nd opinion consult....

     Mind you the OS We have has a (Onco -Rad -TX) TEAM in the same hospital that meet and confer on each patient. They are one city over, and have been working successfully together for more than 30 years. My Onco met with my Mom and Me and explained to her the details and that she should have TC x6 3 weeks apart, followed by 6-8 weeks of Radiation (due to Lumpectomy), she would need a port, Neulasta, and followed very closely due to her age, Family History of BC (her Mom and Daughter), and he would be ordering more test for baselines.  He gave her a RX for the Port and She expressed concern about having another scar on her chest! SMH!!

 The Woman Oncologist did a great job of explaining TNBC concerns to my Mom.   Hearing it for a second time seemed to help... but, and you knew there was a but... The Woman Onco said my Mom only needs TC x4 3 weeks apart and no port, and Neulasta. (No Port needed?)  And she would recommend that she sees a Radiologist for her treatments, and  had her staff give my Mom a list of recommended radiologist in the area. ?? A bit of fragmented care??  BTW when I expressed concern about "Why no port and limited Chemo?"  given my experience with a collapsed damage vein in my left arm and knowledge of TN return rate and no follow up drugs, The Doc dismissed me saying I'm sure you were treated with harsher drugs because it was a long time ago.  She then asked me to leave the room while she spoke to my Mom.  Of course my Mom likes the idea of having less chemo and no port.  I fear this Dr isn't going to treat this aggressive enough to give my Mom a good outcome.  She even said that the Estrogen shot my Mom has been getting (last one in June)  doesn't matter because this wasn't ER+ or PR+??  We know that Hormone replacement increases the chances of breast cancer period.  SMH WTH   This Dr staff ordered and scheduled the baseline (PET, MRI, Bone) scans before my Mom left the office.  (I feel that was to lock my Mom in to seeing this DR).  I don't deny she needs the tests, but it all seems a bit fast.  I don't like that my Mom still has an open wound under her arm.  Adding radioactive bone scan dyes to her body before it's healed sounds crazy to me.  (BTW) that bone scan happened today.  Heck the Dr didn't even look at the wound under my Mom's arm, when she offered to show her it.  My Mom is only 2 Weeks PO... She can't start Chemo til she is at least 4-6 weeks and healed.  Whats the rush?  The MRI people called back and said they can't take her until she is at least 6 weeks PO.  That should say something.  I just so scared for my Mom, that she is going to try and take the easier road and not remember to tell the Drs things they should know, and wind up not getting through this.  How do I express this to her?  How much of this do I need to give up to God and let my Mom do this on her own?  (BTW our OS and my Onco had told her to bring me for support)  Frick! my Mom is 80 and doesn't remember everything and doesn't understand all this, and seems only concerned about getting her implant back in?  

The only good thing about the meeting yesterday with this new Onco, is that my Mom sched an appointment with her old Plastic Surgeon and another (female) Plastic Surgeon I had consulted with for reconstruction.  She met with the one I recommended today, and I'm anxious to hear what she recommends as far as the radiation and Lumpectomy and if my Mom should just have a nipple/skin sparing mastectomy??  I just want the best possible outcome for my Mom. 

Okay, let me have it?  Please give me some words of advice/experience and/or confirm my observations.  

Calidaughter - I have a different perspective to offer.  While I'd like my mom to live happily forever, I would not want her to endure chemo.  She's 82 and I would completely discourage her from doing it.  I think you should have a good discussion with the MO you both trust the most about what she gains by undergoing chemo, what she might lose in the way of quality of life, and whether or not conservative treatment might be good enough for her (lumpectomy and rads).  Have him spell out the advantages/disadvantages before your mom undergoes chemo.

And don't let anyone rush the decision.

Bernie - Husband and I had such a good laugh at your diary! I think he winced, when we got to the power washing bit. Thank you for sharing.

Kathryn - Maybe you need to re-seat the potty? While it's up, bleach the exposed flooring? I hated filling mom's pill boxes - but did find it satisfying when done.

TifJ - well done on the candy self control.

SSmith - Well, I think you've won the worst day, hands down. I can only imagine, how long it takes for that news to sink in. We're here for you!

Calimom - What a tough spot you are in! Your mom sounds like someone I would love! But, I'll bet it's hard to be her daughter. My mom had a great desire to LIVE - if they told her she'd have to take off both boobs, an arm and a leg. she'd do it. It was hard to tell her, I thought she should stop fighting. I hope you can get all the information you need, to help her make the best decision. Do you think you could broach the subject of your being named her POA?

Nite all - sweet dreams

Inmate - May the 11th, be the last!

In reading the latest posts and things.......so being TN does that mean we're all on the path for recurrence and we should just plan for the end of our lives?!  I try to stay positive but it's so hard when I have this TN diagnosis hanging over my head.  That scares me more then anything else.  Do people who're TN really go on to live LONG healthy lives or are we all doomed?!

And another thing to keep in mind...no one knows what the future will hold.  We could have a cure in two years.  So never give up hope!

Lisa - Woo Hoo! Doing the happy dance for you!



Was watching Olympics and forgot to take my sleeping pill. I loved seeing the joy on their faces.

Sawasdee kha. I live in Bangkok,Thailand. Not fluency English but love to learn the 2nd language. I has been reading the post here after I was diagnosed as a tnbc a few months ago. I celebrated my 49 years young last week. I have been getting radiation treatments now 12 rounds already then 13 more rounds another weeks.



Thank you for all posting from all of you. Knowledgeble. Brave. Humorous. Caring. Make me feel I have friends who are with me all the way of my this hard journey, especially who have humorousity like CS...I love your post..thank you..you were back as friends request!



Even Asian culture is collective, close to family and friends but difficult to find people who understand what I feel exactly about my situation but you here.

Dear God: Let me give you a list of just some of the things I must remember to be a good dog.
1. I will not eat the cats' food before they eat it or after they throw it up.
2. I will not roll on dead seagulls, fish, crabs, etc. just because I like the way they smell.
3. The litter box is not a cookie jar.
4. The sofa is not a "face towel."
5. The garbage collector is not stealing our stuff.
6. I will not play tug-of-war with Dad's underwear when he's on the toilet.
7. Sticking my nose into someone's crotch is an unacceptable way of saying "hello."
8. I don't need to suddenly stand straight up when I'm under the coffee table.
9. I must shake the rainwater out of my fur before entering the house-not after.
10. I will not come in from outside and immediately drag my butt.
11. I will not sit in the middle of the living room and lick my crotch.
12. The cat is not a squeaky toy so when I play with him and he makes that noise, it's usually not a good thing.
P.S. Dear God: When I get to Heaven may I have my testicles back?