Calling all TNs
Comments
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Cocker I'm glad your back!
Ladies please bear with me as my typing and punctuation arent great while the old noodle heals from surgery, plus the daily brain rads probably dont help. I'm just happy to be home from the hosptal after such a long stay. Ladies at risk of offending - if you can make your own coffee and wash your own butt in your own shower, then the rest is just bonus! I will continue to post and read here. Haven't had the guts to go over to the mets forum yet but I willl at some point. I'm sure I've missed some news here and I apologize for that. And a word to the newbies here....my situation is very rare so pease don't be scared off. The ladies here have very good advice to give you. More later!
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Mags: Sorry about your recent news. But yes it's good news that they can just "cut it out". Battle scars are not something that anyone wanted but be proud of them - you're a Warrior!!!!
30: Welcome to the group. I am assuming that you're a young mom (just from your name). I too am a young mom so if I can offer any support or anything while you're balancing the treatments and mom thing let me know.
I had a horrible dream last night that my cancer came back and I had to say "goodbye" to my kids. I woke up in a sweat and bawling. I feel very shooken today by it. The dream was so real that it scared me awake. I was snuggling my kids SO tight this morning and kissing them all over their faces. I think my oldest thought I was nuts. He said, "Mom I am trying to build my lego". Oh to be innocent like a child and what I wouldn't give to go back to the way things were before cancer!!!!
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Gemmy- I continued to take Ativan for a year after I started chemo. I finally weaned myself off, but wonder if I should have. I still don't sleep well. I take an Advil PM a couple times a week just to get some good sleep.
Mags- Crap is right!! I'm glad it can be taken care of!
30 year-old- You have come to the right place! You will get nothing but good advice and help here- no judging about what is right or wrong- we may have our opinions, but will always support each other's choices.
Born- I still have those awful dreams too. I wake up completely worn out because I am crying so hard in the dream. Weird how it feels so real! My kids are 10 and 6 and I shower them with hugs and kisses everyday. You never know what's going to happen- cancer related or not!
Inmate- will be thinking of you at your appt. tomorrow.
Titan- must have been very weird to be in the chemo room again, but not you being hooked up!
Hope- thanks for sticking with us.
Cocker- about darn time!!LOL! Glad you are well! Don't forget your laptop on Monday (maybe tape a note to your forehead). I feel like that is what I need to do to remember things!!
Tazzy- we will all be with in the operating room!
To those I have missed- Happy Friday!! I am off to grocery shop- please send me some some strength to not buy any peanut clusters! I have GOT to stop eating those!!
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You ladies are amazing. I wish I could keep track like many of you do and go through and comment to each person. But the intention is here and I read each person messages. So sorry for all those dealing with reoccurances. It is my worst fear and I haven't even started my first chemo yet. I start on Tuesday. Finding myself super emotional right now. I am sitting here at work and crying while I type this. Just had a co-worker check to make sure I am OK. I am super scared about what is happening on Monday and Tuesday. I want to hide my head under the covers. Hiding from the big bad monster under the bed, just waiting for it to go away. Everybody says how strong I have been and what a good attitude I have but here I sit crying.
Anyway sorry for the rant. Healing hugs out to everyone. Lots of Love.
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tooky--we get it believe me we do. This is the hardest thing to face and it is sometimes so overwhelming. You can do it though and we are here to help you through! All of us were scared before the first one--it is def the hardest--but by your next infusion you will feel more confident about what to expect and what comes next. Crying is a great release for all of us to be sure. Then when we are finished we put our big girl panties on and fight like a girl!!
Maggie
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Cocker.......I am so glad to hear from you. Whew! It just isn't quite the same here without you. Glad you were able to settle in and make some friends. That should make the rest of your time there more enjoyable. Enjoy your weekend home with the old feller and the animals. Love.......
Hope....thanks for the giggle on the shower and coffee. Quite the perspective my dear. That noodle still seems sharp to me. I have not gone to the stage IV board either. I just don't want to admit that I may in fact be stage IV. I'm using the old ignorance is bliss method on that one. I don't ask my doctor and he doesn't tell me. I am guessing that method may fail me today. I will have to embrace the eyes wide open method soon enough. Looking forward to hearing more from you.
Mags.....Oh boy, that sounds a bit more like a nightmare. So sorry! I can just hear it now "Mom, get off me!" Gotta love it. Now where is that time machine? Do you think we can get a group rate? Put on some happy music and dance, dance, dance. That should confirm your crazy status with the little ones.
Thanks Tif....now I want peanut clusters.
Tooky.....The first time was the hardest for me. It is that unknown that got me. Remember, if strong people didn't cry they wouldn't know how to be strong. You wipe your eyes, take a deep breath and say "no more tears, for right now". You must save a few for later. What will you do when you stub your toe? Do something this weekend that will take your mind off of it. Pretend you don't have cancer or doctor appointments or surgery. My garden was my oasis the first go round. The weekends were a success if I went through without thinking about cancer. You can do it! Big Hug!
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Inmate and Hope - thinking of both of you today!
CS - hope all continues to go well with your rads.
Tookybum - I promise you that everything you are going through right this minute is way worse than the actual chemo treatment. I know that sounds crazy, but I also know that almost everyone here will agree. No apologies, ever, for ranting! We're all here for you.
30yearold - never, ever, feel guilty! All our journeys are different and scary in their own ways!
Tazzy - good luck with your surgery. Hoping all goes well and you heal quickly without any complications.
I think we all have anxiety in different forms. I have been taking a sleeping pill (Restoril) for two years, and I have no intention of giving it up. Sleep is important! Luckily, I don't have bad dreams although I've had a few I'd call "weird."
Taking my mom for a physical this afternoon. I was going to an outlet mall but we are getting some much-needed rain so shopping will wait. It's not like I "need" anything!
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Tooky......This is for you, chemo can be fun too. yes, i know i said fun and chemo in the same sentence. here are a couple of pics from my halloween chemo day. we tried very hard to get kicked out. never happened! btw, that's my mom with the wig on and my sister with her wings upside down.
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LOL, Inmate, that mask is hysterical!!! We tried to have fun, too!
My last chemo - check out that crazy wig and sunglasses!
My daughter preparing the "spread" for our Parisian breakfast
The rest of the breakfast!
I think it helps if you do things to make it a little fun and it makes the time go more quickly. We did popcorn and movies during one session. Those chemo nurses will never forget me!!!
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Luv......wow, that is a nice spread! Your daughter is so beautiful and I love the wig!
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Thanks, Inmate, my daughter is beautiful in many ways! That wig was a $25 costume wig for a 70's party and I ended up wearing it for that last chemo session. I may have to drag it out for a Halloween party this year if we get an invite.
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Hope, honey! I am very sorry for not posting for a while but I can explain that later. I just wanted to tell you that I am so so very sorry to hear what happened to you. You and I were diagnosed at the same time (you in June 2010, myself in July 2010), and we both almost had the same diagnosis, which is TN, Stage 2A, 1/0 nodes, and the only difference was that mine was Grade 2, yours was Grade 3. I never thought in my wildest dreams that you or anyone for that matter could get brain mets, after such a long time. You said in one of your prior posts that it has been 14 months - maybe you are counting from your surgery date, but recently I celebrated a 2 year mark on July 10, from my diagnosis date of July 20, 2010. I hope they got it all from the brain mets. I have heard real success stories of brain mets, so am hoping, praying, sending you tons of love and prayers that this will once again be in the past, and that you move forward again. Please stay with us and let us know how you are doing.
I have been having real eye problems, and at one point I got really freaked out about losing my eyesight, so I stopped looking at the computer screen except for work. Yesterday a friend gave me an anti-histamine and the eye redness went away, so I am hoping that it is just an allergy and nothing related to my eye. I have missed reading everyone's posts. I recently read the latest posts and noticed people saying how sorry they were for you. What? I was shocked, just too shocked, no way, not Hope, I still can't believe it. Thanks for sharing your story with us.
You are very brave. Not sure why this is happening to such wonderful ladies. Why we have been chosen to bear this disease in this life? I have so many questions.
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Oh Lovely....I hope and pray that you are ok.
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Hang in there Tooky. The first is indeed the scariest because you just don't know what to expect. When I felt anxious in chemo I'd close my eyes and in my head I'd repeat "I am healthy and I'm well......I am healthy and I'm well". I still do that sometimes when I'm having a "moment".
For my last chemo I wore a pink tutu, a tiara, my wig and a shirt that my team made me that read "Brave. Hot. Bitch". They put me in a private room because my friends all came and we had a party. Cupcakes, sandwiches, I drank orange juice from a wine glass (my friend had a rum and coke...shhh!!). We had a riot. Everything is what you make it after all.
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tookybum-It will be 2 weeks Tuesday since my first treatment and reading your post made me cry all over again. I was so scared when I walked into that infusion room. The entire time I just cried. My onco came in and said take a picture because when you look back you will realize this was not that bad. I can all ready tell you she was right. The last 10 days have not been bad however, the 7 days before chemo was horrible. Fear is a powerful emotion! Take a pill have a drink and relax you will get passed this.
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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!0 -
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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
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Hi all, I've been busy trying to be productive, so have just been reading.
Minxie - congrats on finishing rads and thank you for that heart felt post.
Hope - I'm so sorry that it was mets, but glad to hear that you've made it through surgery, and are on the way to blasting them to oblivion. (you forgot to mention the joy of your own bed!!!). Please don't leave. Yes your post scared me, but it was a much needed reality check. Pushed me to make some changes that need doing.
Luah - your trip sounds wonderful.
LuvG - hope you're feeling better?
Inmate - what a cutie! "green approach" ....*gigglesnort*. Loved the family pictures, now I understand that insanity runs through your whole family tree!
Jan - any news?
Titan - I almost stopped reading when I got to "the contract". My female brain just started screaming .....NOOOOOOO!
Lory - hoping for good test results for you.
OBXK - laughed at the "shirt off" comment. Congrats on the house offers. I'm in one of those estate messes, and Hope woke me up that I need to get things straightened out. I need to get things in order, so I don't leave this kind of mess for my cousin, if something should happen to me.
Tazzy - sorry that reality has reared it's head and is scaring you. We'll be holding your hand.
NavyMom - sorry you can't see NavySon.
Borntosurvive - told my doc he'd pry my Ativan out of my cold dead hands. I like sleeping and not spending the whole night dreamin of all the things that need doing. Love the way your family celebrated!
30yearold - Welcome. This place is all about support and definitely helps with the loneliness.
Mags - Know its a PIA, but I'm very glad it's not Melanoma (which has even less treatments available than TN)
Cocker!!!! Glad it was as simple as a forgotten laptop, we were worried!
Tookybum - Mags said it perfectly. Cry when you need, then pick yourself up. Really the fear is worse than the actual experience.
Tifj - no mentioning food, just started Atkins and it's getting ugly here.
LuvR - for the love of God, not food pictures!!!!! (love the wig). First person that starts mentioning chocolate cake.....I'll hunt you down, lol
Bernie - that was hilarious! Hurt myself laughing everytime I read "watch doctors and nurses panic"
Well, I'm off to my very glamorous and exciting life. Today, I have to pour Mom's pill boxes for the next month, balance her checkbooks (she has 3, an insists they be balanced monthly), play both our bills, and shuck 2 doz crabs. (ok, I did sneak off and go crabbing yesterday). Tommorrow I have to work on rearranging garage and clearing porch so they can drill in termite bait. (Bad news is they are on the property, good news is they haven't gotten into the house). And dear Lord, if anyone has a tip to help with this, please give me a shout. Main bathroom (in the heat of summer) stinks of urine. After scrubing everywhere, I have figured out that urine must have
been leaking into the sub-floor before I replaced the toilet this winter. Other than ripping up the floor, any suggestions? Ahhh, off I go to my glamorous life. (not a good time for no carbs I assure you!)0 -
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.
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minxie - I am not finding the exact right words, so I will try - but I think what I am trying to say is that you did the best and were blessed with the best situation out of a bad one. A local recurrence (really lucky and blessed to have this versus mets). And not having to do chemo twice - the best yet again. So, my hats off to you and all I can say is that someone up there is watching over you and taking care of you.
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Proud of myself- I did NOT buy the candy!!
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So many post that it is hard to remember and post back to each of you. But I read them all.
I am sending hugs and prayers to all!
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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.
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doreen....nicely put!
Kathrynn.....insanity is the only thing that's keeping me normal at this point.
Bernie.....oh boy. I have a glass of wine waiting for you. Come and get it. Thanks for the laugh (albeit at your expense) and why oh why do they trolly you around the hospital like you are at a dim sum restaurant? Just love your humor and fortitude! Again, come get that wine quick before it's gone.
Tif....good for you. Stay strong!
To all you ladies....I love you all so very much!
I will be starting my 11th chemo on Monday. This time Xempra. This is a new family of drugs that my cancer has not seen yet. Maybe the sneak approach will work. Hit em while they aren't looking. I also qualify for a trial of topical chemo to battle my stubborn skin mets. I can do both right now because the trial only requires that I am off chemo for 7 days and it doesn't start until Sept/Oct. The good thing about the mets is that we can instantly see if the chemo is working and switch on a dime. Next up (if necessary is Abraxane). Whatever, just find one that works!
Have a great weekend ladies and again, immense love for you all!
Crazy, signing off for now.........:)
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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
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Thank you, Dawn. And I applaud you for participating in the trial. I was so afraid to participate in a trial during my first round. But, after watching the movie, Living Proof, I realize the importance of them now. I applaud all of you who have participated in trials. Dawn, I may PM you about the side effects of my new chemo drugs this weekend. Thank you so much for the invite. Think I'll sign off for a while and catch my breath before dinner.
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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. 0 -
Calidaughter - Oh dear, you have a lot on your young shoulders right now. Relax a bit, I totally understand when you love someone and are not able to help, they won't let you. That is the single most helpless feeling in this whole world, which can't be compared to anything else. I have experienced that with my son when he was 18 and going on the wrong path. Since he was past 18, I could not help him much and society told me I had no legal rights. You know this may be very far fetched, but during that time someone had told me that sometimes if you have a loved one, whose health or well being is in danger, one can go to the court and get some sort of order from the judge. I did not have a chance to try that method. Since your mom is an adult (although a very senior), maybe there is a way via the court/judge. I honestly had considered getting the order from the court to be able to help my son. I am wondering if you are the only child of hers? That must be even harder on you.
Plastic surgery should be the last thing here right now. Also lumpectomy does not require reconstruction, maybe I am not understanding why she is considering seeing plastic surgeons. I had a lumpectomy myself and do not require reconstruction. It seems like you had TN yourself, when was that? I am so sorry, I hope there is a solution for you and your mom soon. Hope she wakes up from all this and realizes the reality. Well, she has already gone through this once with you, so maybe she is reacting this way due to those scary feelings. Wish you the best.
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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.
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