Calling all TNs
Comments
-
LRM- thank you for your post! My toes are still numb at 2 months out, no pain like you mentioned, just annoying. I will try and be patient and hope that it improves!
0 -
Inmate and LUV - I don't post much but I think of you every day and keeping praying that you're both starting the drugs that are going to do the trick this time.
Just wanted to share, mainly for the newbies. This weekend marks two years since I was diagnosed. That weekend went in slow motion, but the rest went by so fast. And here I am, two years later, and just finished planning a vacation to Jamaica in June to celebrate my DD's college graduation! For the first time, I'm comfortable making plans that far out. And DH and I are trying to figure out the empty nester thing cuz our DS just left for college two weeks ago. Now it's just us and our golden retriever, and we've decided that this chapter is gonna be fun! I'm just so grateful.
Thanks for letting me celebrate here!
Kathy0 -
Kathy - What a beautiful story. Thanks for sharing. Jan
0 -
I am getting depressed reading some of these posts especially the one's about "when I'm gone" Where are you going? Are we not in Treatment so we can live? Do you know there are many Women living for year's and year's after being diagnosed with TNBC?
I would hate to think I am dealing with all the nasty side effect's from Chemo only to die anyway. I think we all need to stay positive so we can live. Marianne
0 -
Hi Marianne, we are all positive or certainly as much as we can be day to day. For me I think it is sometimes natural to think of what could happen especially when we have lost someone. I know that talking on here about good and bad days is how we help each other.
0 -
Can anyone who has had a total mastectomy with Reconstruction surgery please tell me how long the surgery last and how long is the hospital stay?
0 -
Kathy - kudos on 2 years!
Marianne - we are all in different stages of our BC journey. This is one of the few places we don't have to plaster a smile on our faces, when we go to the dark place. Here in this group, we once lost 3 beloved friends, in a matter of days.
I'm glad you are in a place of hope!!! Wishing you well...0 -
Loretta- I had a single mastectomy w/ reconstruction. My surgery lasted about 2 hours and I stayed overnight. I imagine a double MX would require more surgery time, but I don't know if the hospital stay would be much longer. You know how insurance companies are!
0 -
Marianne- I don't mean to be rude, but this thread is not just about staying positive and being happy all the time. As OBXK said, we are all at different stages on the journey. Some of us are Stage I, some Stage IV and everywhere in between. It is an unfortunate fact that this beast can come back at any time to any one of us. For some it has and those ladies (or anyone of us for that matter) should be able to voice how they truly feel. We are here for each through good times and bad. If this is not conducive to your wanting to be positive and happy all the time, then perhaps this thread is not for you.
0 -
LuvRVing, I sure will be thinking about you and I appreciate your being a pioneer for all of us. Of course I hope this clinical trial is hugely successful and that you will soon be NED and feeling well. Keep us posted about your experience.
Inmate, a shout out to you. I too took Vitamin B6, acetyl-L-carnitine and L Glutamine while on Taxol and only had minimal neuropathy. I hope the Abraxane is kind to you, and very successful.
0 -
I am sorry if I offended anyone as that was not my intent. I am really sorry.
0 -
Marianne- We know you meant no harm. Just wanted you to know why we post both the good and the bad. This is such a rough road, as you know, and we cannot possibly be upbeat all the time. Please stay with us- we can be here for you too.
0 -
Ladies - thanks so much for your support! So far I've done three full days and have had no issues with the trial drug. Today I biked 6 miles with my DH, DDIL and DS, then we went out for lunch and ice cream. It has been a fabulous day, including weather-wise.
Loretta - I had a BMX with TEs and I was under for about three hours, and I spent just one night in the hospital. By 1:00 the following afternoon, I was ready to be home.
Marianne - I'm one of those who went through all the chemo, surgery, rads, etc. and a few months afterwards, here I am at Stage IV. Believe me, if remaining positive was all it took to stay alive, I'd be living forever. A positive attitude helps me deal with whatever this beast throws my way, but it won't give me life. Oh how I wish it were so simple! And it's good to know I have a place where I can just release my feelings, knowing that everyone here gets it.
0 -
Luv- I am so glad the new meds are treating you well and you've had a great day!!
0 -
Luv - I'm so happy you are doing well. Being with your family for so much fun must have been especially sweet. I love seeing your messages and appreciate your attitude. Jan
0 -
Kathy - Congrats on your 2 year anniversary. Enjoy your empty nest and your trip to Jamaica. I retired in 2010 but then my DH had a heart attack. Just when he got his one year "thumbs up" exam, I got my diagnosis. I finished chemo 2 months ago and am planning a trip for next summer. It's time to start really enjoying our retirement!
Marianne - Don't be depressed by our "after I'm gone" talk - no-one is giving in! We have very strong fighting women on this site! We are all going to "go" some day and some of us are closer to that inevitability strictly by virtue of age. And because we've been on this unpleasant journey, many of us have also come to the realization of what's important and what isn't. So we've decided to start de-cluttering our lives. But, rest assured that, while we may at times think about it, none of us are ready to go yet!
Hope everyone who had a long weekend really enjoyed it - it's Labour Day, here in Canada. And although the temperature was 27 Celsius (79 Farenheit), DH and I spent it watching exhibition hockey games.
Doreen
0 -
I still have a long way to go with my treatment however, I have all ready started planning my first Cruise next November. The one good thing about bc is you learn to start living NOW!
0 -
Doreen - I just noticed your little tag line about being on the green side of the grass...love it!
0 -
Morning Ladies.
TIFJ/Yodie - can I borrow your hubby. My old fellar keeps everything and I mean everything. I would give anything to have a good clear out of the garage so I could get my car in even if he doesn't mind his sitting outside. He is absolutely shocking when it comes to throwing things away but the trouble is when anyone wants anything he always has it, and then I get 'see I knew I shouldn't throw it away'. So bloody annoying to know he is right!!
Belleeast - we don't get scans here in NZ either unless we have a new symptom. Even though we have to wait for the results and get quite terrified I wish we did have the scans to know that everything is alright for peace of mind.
KSteve - congratulations. Your diagnosis is the same as mine so you have given me a great hope knowing that I may make it like you have. Enjoy your trip to Jamaica and really live it up.
Marianne52 - I felt just like you at the beginning of my treatment which was as I saw it 'to keep me alive' and I felt quite down at reading some posts. But over the time I have been on here I have gone through all the stages that the other ladies have gone through and had my doubts and fears just like them. We have also lost some wonderful ladies that used to be on the thread. There are always the 'what ifs' because we are fearful of it coming back some days, not because we have given up the fight and/or ready to die. Not one of us on here feel like that. We are all as positive as we can be but we all have our down days and we understand each other and that is the beauty of this thread that we are there for each other and can say what we feel. Don't worry girl none of us have any intention of going anywhere for a long time, God willing. We will still be chatting to each other in ten years time and still eating chocolate cake lol.
LUV - great news that you are having no issues. Hope you enjoyed the icecream you lucky girl.
On the neuropathy front I don't have any in my toes but my fingernails have all gone funny and I'm hoping I don't lose them. My fingers are tender if I touch something and I can't pick up anything heavy anymore. They are also still numb so I am hoping that this comes right because of my typing.
Have a good stress free day ladies. Enjoy yourselves as much as you can. Big hugs to all. Annie
0 -
Hi All,
Luv..love the toes and wow it would be so great if your pioneering is the TNBC drug we are all looking for.
Inmate.. so glad to see you posting, of course, not today for sure.
I spent the weekend with my 2 children, 29 and 19 driving to upstate NY to see my mom and sister at my mom's summer cottage- petty cool for an 85 year old lady- but she is getting ready to sell it and then we went on to Albany where we used to live for a party with tons of college friends. Great for me- less so for my children. We spent the night in Williamstown, MA at a B and B before dropping my 19 year old off to college in Bennington, Vt. Absolutely gorgeous ride home but so glad my daughter was willing to come with me as I still get tired and sometimes the petal to the metal just makes my feet tingle way too much.
Bernie...great idea...keep me in the loop if it is not too much trouble....
Annie.....my husband is a book packrat. I literally packed up 140 boxes of books when we moved last fall, all while doing chemo. My friends helped but it was tough. Now they are almost all still in boxes except for the ones my friends have helped me come and unpack. 2 library book sales and 2 summer Quaker church sales later not a book of his has left the house. In fact more have come in....oy! I love books but we need to build a library on to our house.
Glad to be back home. I took the week off to clean our sons room...And to paint of course.
Cheers to all you wonderful women.
Enjoy the lovely moon.
0 -
This is a place where we can rant and rave to our hearts content and there will always be someone there to listen. Some times it just pisses us all off and we have no other place to go..hugs to everyone, especially those of you who are discouraged.
0 -
This is a place where we can rant and rave to our hearts content and there will always be someone there to listen. Some times it just pisses us all off and we have no other place to go..hugs to everyone, especially those of you who are discouraged.
0 -
Marianne:
First off, know that on this thread, you will never ever have to apologize for any human emotion that you feel. You were only diagnosed in June, you are just beginning your journey, and of course, you are petrified and still in shock, I'm sure. Hell, I'm out 3 1/2 years since diagnose, and I am still afraid too, but it does get easier and the fear is a bit less monstrous (unless I have a new pain somewhere, even if its my earlobe!).
We all know that the type of cancer that we have can be very sneaky and insidious and unfortunately, we have had to watch several of our very beloved and dear sisters on this thread go from what appeared to be good - to bad, and then worse - when we lost them. I think I can speak for all of us when I say 6 months later and we are still trying to figure how this could even have happened. Unfortunately, this sometimes does, but I can assure you that every one of us on this thread are fighters that intend to win, just that some of us have a rockier path than others, and none of us know when that may someday be us. We laugh a lot here, and we cry when we have to, but our faith and the strength that we all get from each other overrides everything else.
I think the most important thing I need to add here is that, and you will probably find the same, once we go through our treatments, no matter how many loved ones we have rooting us on, we have all found that most of our support system would prefer to bury the fear and shock that our diagnoses have brought into our lives and our loved ones lives. They are afraid too, but don't know how to deal with this fear of what might happen to us, so offtentimes they respond to our fears, aches, pains, etc., with - you will be fine, your treatment worked, so on and so forth. This is the only place we can all come, and you are included as well, to cry, rant, rave, tremble with fear and ask for hands to hold to get you through a bad night, share a picture, tell a joke, and if you happened to be unlucky enough to end up with a complete jerk of a husband or boyfriend that deserted you through this horror, then we help get you through that too - the list goes on and on. No one, absolutely no one, no matter how close they are to us or how much we love them, can ever truly understand what we are feeling but another sister. You will see as time goes by, exactly what I am saying.
Welcome - we are here for you now too, and will always be. Wishing you nothing but the best always,
Linda
0 -
Luv - so glad you are doing so well on the new meds! Your day sounds lovely! We had storms here on the coast. The only exercise I got all day, was peeling myself off the ceiling after a really loud thunder clap!
0 -
Painting - your trip sounds wonderful! Good luck with the books. I donated all but one bookcase full, to the local library. It was so hard! For me, like music , they are place cards, of my life. Be gentle with DH
0 -
Browerl---I had doible mastectomy and implants all in one surgery and it was about a 4.5 hour procedure. I was in the hospital overnight and back home the day after. I had four drains for 10 days. I don't like pain meds and managed to not need them much. The thing that was the most nuisance was pectoral muscle spasms. I still get them occasionally, but not bad. Kind of like Braxton Hicks on your chest! I'm quite happy with my surgery and results. All the best to you!
0 -
I want to share that this weekend, my husband and I attended the Aspen Snowmass Jazz Festival. As happens often on my journey, people enter my life and share a story. These stories are filled with messages of hope, perseverance, overcoming, living! We spent much of our time with friends, one of whom is Nina. Nina was dx w/stage IV lymphoma, starting treatment right after her second daughter was born. That was 7yrs ago. Saturday night, I met a woman who had breast cancer 9yrs ago. Last night, a hot fireman sat beside my husband and me at dinner. He survived stage IV acute myelogenous leukemia, diagnosed 11yrs ago. One of my husband's co-workers just completed his chemo on August 8, for stage IV colon cancer. He's training for a marathon (he's an Ironman).
I share these stories, in particular, for Marianne. None of us know how much time we have. There are accidents and all kinds of things that can impact our time here, just as much as cancer shmancer. I intend to live my life to the fullest, no matter what. At the same time, there are times when I feel raw and mortal, and fear creeps in. At those times, I remember that we all have a purpose. If we all keep focusing on what we have yet to do, that pushes us to live with intention, no matter if we live to be a hundred!
For me, I keep my head in check by being deliberate in not allowing small things to get me stressed anymore. This is particularly difficult at work and with two daughters that are still tying to figure out life themselves (19 and 22). I will keep fighting every single day, whatever comes my way, because I want to see my girls independent, strong, women, who can stand on their own two feet. That is what I fight for. That, and to be able to spend many more years with my wonderful (second) husband, who has been a God-
send to me.
I'm waiting for the day when I don't think about cancer most of the day, and I think about cancer only once/day. And, then, when I only think about it a few times a week, a month, a year. You ladies that are several years out give me so much hope! Thank you.0 -
Hi everyone. I know I haven't been that great at keeping up with everyone here, but I enjoy checking in. Your humor is great.
Hope, I'm sorry to hear your news.
I'm a little on edge myself. I'm finally going for a chest and lower back x-ray on Wednesday. I've had a cough hanging on since May. It was really bad at first but seemed to get better after they put me on antibiotics, and I had my exchange. Maybe I'm worrying too much, but this just seems different from my usual allergies. Anyway, my MO gave me the scrip a month ago and I put it off because she said my chest 'sounded' fine, but I should know by now to follow my gut. Just when I was looking ahead to moving on with my life. Wish me luck.
0 -
Susan - Oh my! I think you and your DH win the book collection prize. I think we'd be in the running, except we discovered our little library (a room above the volunteer fire department) can order books from all over California. What a deal. Three weeks and they're out of here. Oh the money we've saved. Your trip with your children sounds wonderful. Are you empty-nesters now? In case I haven't told you before, I love your art.
Loretta - I started planning my trip to Hawaii soon after my diagnosis and was soaking up the sweet warmth of the island exactly a year later. It was calming to focus on my future plans rather than dwelling on tx.
Annie - I'll pop over and massage your hands if I get to sample the old feller's best dish on his menu.
Tourists are heading down the mountain this evening. We'll soon have the town back.
Peace and joy to all Jan
0 -
Luv - I didn't have a tag line at all until about a week ago when someone sent me a link to this song/video:
http://www.youtube.com/watch?v=6dbBfXCMbH4 I thought it pretty well summed up how I'm feeling right now.Doreen
0
