In shock
Comments
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Sara welcome to the group and imagine we have our arms around you. Some doctors just seem to forget we are real people, not just a piece of paper with a Dx.
Benny, I am so happy you made it through your surgery, you have come so far since you first starting posting. Hoping for a quick healing for the Poor old boob! -
See Benny? We told you you would be fine, and here you are. I am so happy that your surgery is over. That was the first (big!) step in the process. As for chemo, I was stage one with only one positive lymph node which had a teeny tiny micromet, and I had 4 cycles of chemoptherapy. No, it was not a walk in the park, and I absolutely hated the idea of having to get chemo, but in small steps we eventually get through it. It does pass like everyting else in this life, whether it is good or bad. The anticipation is way worse than the actual thing, just like the surgery. Hope you will feel better in no time, Benny. Is Fred doing his duty and keeping you company?
Sara, I'm thinking of you. Let us know how you are doing. Once the dust settles a little, you will have a clearer picture as to how to move forward. Sending you warm, positive vibes and big hugs.
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Hi everyone
thank you for
The warm welcome. Benny sorry to read about the mpob. Hope you heal quickly,if you can go through surgery it gives others hope they can do it too. Keep a great attitude. I wish I knew the physical things that may happen. ( I have an idea) nothing for now.Dr said no surgery now and I am in a "palitive" chemo. So far no side effects no pain. On the outside I look so normal going to work, getting the kids off to school, making dinner all while this "thing" is raging inside of me. I don't have time for cancer. I have way too much to do. Many projects on the go.. How can I possibly squeeze in a little chemo.Yes I'll go for the treatments just another appointment in the iPhone. How long does it take before reality sets in and I have a mpob? I'm sure it's around the corner. I'm changing the acyrnim though to mpyb, sorry bennymuffins, this is something that I didn't think could happen to a single young professional with 2 kids. Boy was I wrong. I feel your initial shock. I think I'll just schedule a date to get over it... October 31 looks good, I'll just pencil it in.
Thankyou bear cub and everyone's comments
Bearcub I noticed you are her2 +, have you heard of any new
Trials with TDM1, the Edmonton one has been postponed to January . What are your thoughts? -
Sara I have heard nothing about the trial you are talking about. How did you hear about it? I am going to look it up on the net and see what I can find out.
They have me scheduled to do 17 rounds of Herceptin once every 3 weeks. -
Okay I read a bit about TDM1. Did your doctor suggest this trial to you? I couldn't find anything on the Edmonton trial. Its a tough decision to make to be in a trial, I guess if Herceptin alone was not working for me I would do what I had to do to extend my life. It did sound like there are some side effects I certainly would investigate that.
Have you asked anyone in the stage IV thread. They are girls that have mets and may beable to help with trial info. -
Sara, the shock of all this is staggering. Less than a month ago I was covering a caseload of 67 patients on 4 units of a small hospital (I'm a social worker), performing small miracles and running mini-marathons at work every day. In my spare time I was volunteering at the farm where I board my horse, mending fences with heavy tensile wire and hammers, filling badger holes with large heavy shovels, riding tractor and tilling acres and acres, slinging 50-pound bales of hay onto the Gator, riding horses, climbing ladders and repairing the roof of our arena 40 feet up in the air, etc etc. Now all of a sudden I am fighting for my life. Huh? What happened in less than 30 days??? I still think they've made a mistake. I'm now post-op and it still hasn't quite sunk in yet, believe it or not.
Are you going to stay with that doctor? I am going to do some digging around on that Edmonton thing. Are you in Alberta?
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Thank you Beesie, Bearcub and Liefie. Gigantic fat puddy tat is lying in my lap right now as I type this, Liefie! He's purring away like a motorboat that needs a muffler!
Thank goodness for small mercies. -
With regard to the TDM1, it sounds like the best thing is to contact the Roche representative in your area for the most up-to-date information.
This freaking drain and plastic tubing is driving me insane. And it hurts like hell. Not in a good place today
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Benny
Drains stink. It is amazing how dragging a plastic tube and bulb impact your psyche BUT it is temporary!
When I had my double mastectomy 3 years ago I had 2 drains in each breast for a total of 4 I dragged around for 2 weeks : (
After that I think I have had no less than 5-7 breast drains over the last couple years due to all my attempts at implant reconstruction on the radiated side that failed, all the way to this last surgery, SGAP, hip flaps, again 2 breast drains but those were only in a week, but get this 2 hip drains that were in a MONTH. I am just one week free of my last hip drain, ahhhhhh
So I share that because I think I have more "hole" scars from various drains than anyone I know, do I can relate to the nuisance drains are. : )
This too shall pass, you are doing great! I had my kitty nurses helping me too. I have 4 so yes I am a crazy cat lady - wink wink
You can do this! There are so many wonderful women who have gone on to live decades after their treatment, so you will be back to climbing ladders, riding a tractor, and throwing 50lb bales of hay before you know it. AND you will be even stronger than before, not maybe physically, but mentally/psychologically cancer tests your mettle, puts things in perspective, in a good way. It is a natural part of the process for most of us. As a social worker you will get it, but you will definitely no longer sweat the small stuff and lots of things become small stuff.
We are all dying every day from the moment we are born, but a cancer diagnosis puts us in REAL contact with the fragility of life, good and bad. We are just more aware, which for many of us that felt pretty darn good before we get the news, is difficult to wrap our brains around. It is a process, and it is what it is.
One of my favorite quotes after my divorce ( I was married for 11 years ) and it had even more meaning after cancer was life is a journey not a destination. I try to enjoy each step, learn the lessons, and really take it one day at a time. I know it is a bit cliche, but it helps to remember I don't have all the answers in every moment and that is OK. I like who I am and who I am is not a single piece it is the sum of all the parts and even cancer has had a hand in who I am today. Of course I do have a part of me that wishes I never had to deal with this, but I just try to make the best of the cards I am dealt because I don't like the alternatives : )
Huge hugs
Lesley -
Sara
I am so sorry you have to be here and to hear your diagnosis, and that you have young children. I was diagnosed 3 years ago, stage lllA. You can see in my tagline. I have 2 step kids (boys) that live more with me more than with their mom. They are now 12 & 9. They were 6 & 9 when I was diagnosed. Their mom remarried and had a daughter with her new husband and they have sort of moved on with their new family and left the boys behind. VERY sad. She never takes them on her vacations and we take them on all of ours. Although this Thanksgiving we are going to go without them. I think we need that since the last three years have been so focused on my treatments and surgeries : (
I wish I had more I could say to you. I know you feel a bond to the first people that reach out to
you on BCO because you are so fragile in the beginning. What I do know is there is nothing I can say, other than I am sorry, and send cyber hugs. You are always welcome on this thread.
I will echo what some other people have mentioned about looking into the stage lV group if you
have not done so. Only because even though I had late stage cancer with positive nodes, I was still not metastatic and there are feelings and considerations involved with that diagnosis that I think are hard to address unless you are in the same "club". I can be sympathetic and listen and feel awful for you but there are many ( unfortunately) younger women with young kids in that group and their support and understanding could be invaluable.
Right now my main wish for you is no pain, good response to your current drugs, and the strength to get through those days that you want to cry and scream at the top of your lungs about how unfair this all is - which you should totally allow yourself if you have those days.
I know other people have mentioned but there have been many stage lV gals who have managed to keep a lid on things for 10-15 years and see their children graduate and/or marry. I hope this for you. Therapies change all the time so the goal right now is to hang on until the next drug comes along and hopefully get a good response with minimal side effects. This can be done and still have a good quality of life. Remember you did not choose this or cause this so if at some point you can no longer endure treatments you did the best you could and you did not let anybody down! Be gentle with yourself!
Hugs
Lesley -
Lesley,
I love what you said in your last two posts. Thank you -
Yes, me too, Bearcub. I've said it before and I'll say it again..... Lesley is one of my heroes on here. Thank you for all the thoughtful and insightful posts, Lesley. Your presence here is greatly valued by me and others.
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Leslie-
Thanks so much for your words. I am separated... My husband has decided that the single college living is for him and is cheating on me. I wrote ur words down about life being a journey. I love it!!! Thanks for ur inspiration. !!! -
Lesley, your last post to Sara is so uplifting to the rest of us too. Thanks for sharing your wisdom!
Benny, that cat sounds so adorable. A drain is a royal pain, sometimes literally in your case too. Take pain medication for it, and know that it will come out in a few days' time. I will be getting DIEP flap surgery next year in May, and will probably have 4 drains hanging off me. Certainly not looking forward to that, but what keeps me going is to look at the bigger picture: new boob or boobs (still have to decide if I want to remove the healthy one) and a tummy tuck. And the best part? It will be the last thing that I have to do to be finished with this cancer business. One day at a time, and make sure to enjoy that day. Tomorrow will take care of itself.
Dakota, to me it seems as if you are way better off without that man, harsh as it may sound. I cannot believe he is cheating on you while you are going through this. Hopefully you have a loving support system of friends and family close by. Hugs to you!
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Liefie-
I know I am better off without him and the diagnosis has helped me to see that. It's crazy what One canhandle in life. I know there are better days to come. Faith, lOve, and pixie dust -
Thanks everyone please remember I am three years out so wisdom comes with time and experience. Ladies helped me as a Newbie and I would have been a train wreck and hot mess rolled in to one "ginormous" disaster : ). Without them helping me see what was up ahead - that whole fear of the unknown. Also letting me know you can live a full life after diagnosis.I want to pay that gift forward. : )
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Dakota, you said one very true thing, that we are all much stronger and more courageous than we think. To think that we had to get cancer to learn this? You go girl!
Lesley, I love the 'pay forward' idea. It means so much to hear the wise, positive, uplifting comments from those who have gone before us. Keep on doing what you're doing - it is great!
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I was diagnosed on Thursday, confirmed on Friday and just got me pathology reports back. IDC w/ DCIS. Nottingham grade 6-7. Grade II. ER/PR +, HER2 - Indeterminate for overexpression. Traveling on business in a hotel room by myself and receiving this not fun. I was matter of fact when I got the news, cried when i needed to, but now I am SCARED.
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Marayah,
I'm so sorry for your bad news, and that you were alone away from home when you received it - wow, that must have sucked! The phase where you are now is really the worst, trust me. You are in shock, disbelief etc. over the mere fact that you have cancer, and you worry about how bad it is, what can be done, how it will impact your life etc. etc. As soon as you know more, and have a treatment plan in place to start moving forward on this, you will feel better, and more in control of the crazy situation. Hopefully all this will happen sooner rather than later, so that you can get started and get this over and done with. It is very hard and scary to come to grips with news like this. As someone who has been there myself just 8 months ago, I know just what it encompasses. Let us know how you are getting on, please. (((BIG HUGS!)))
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lumpectomy and lymph removal this Friday. I am so scared, also convinced I will not wake up after operation. I know this is nonsense but wake in the middle of the night frozen with terror.
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Edithester. Hugs to you and know that I'll have a hug waiting for you when you wake up after the surgery. It's not nonsense, we have stepped into a great unknown.
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Edith, you'll be fine. Really. You will. I did it and I'm the wimpiest person I know. I would even go so far as to say that the worst part of the whole surgery, including the needle loc thing, was actually the next day when the anesthetic started wearing off..... serious nausea for me, but that doesn't mean you'll have that nausea either. And they treated that nausea with something called Sofran (sp?). I did take an Ativan 1 mg the morning of the surgery for nerves, which helped. I remember waking up in the recovery room to a young bright-faced student nurse saying "Oh Karen, you're awake and doing well!"
You'll be okay Edith (hug)
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Maryah,
Oh my gosh, you poor thing, getting that news on the road like that. Liefie is right tho'..... you will start to feel better as time reveals more information for you and you have a plan of attack on it. Stay close by as this is a wonderful forum full of very caring people who can support you. They've walked where you are now.
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You are not alone. We are all here with just a click of the mouse.
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Edith, I hate that when I wake up in the night and my brain won 't shut off and I lie there with all my fears..it's when we feel truly alone. I think we all have done it before our surgeries..You will be fine, it will be over before you know it....and the cancer will be where it should be....out of your body...that is definitely worth looking forward to. I will be thinking of you on Friday.
Mariah so glad you found this site, these women are fabulous, so helpful and we are always here. So sorry you are on the road when you got this news...Travel safe. -
Ugh, feeling beaten down, 4 hours sleep, incision hurts, everything is such an effort, feeling hopeless. Shouldn't I be starting to feel better soon? Surgery was on Monday. It's Thursday and I honestly don't feel any better.
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Thank you to all of you. Bit less scared today trying to do ordinary things that helps. Bag packed for hospital DH being really supportive.Watching new series of Dallas and guess what ? Bobby has cancer !! Since being diagnosed seem to hear that flippin word all the time.
Maryah, your sisters are all here for you.((hug))
Benny, sorry you feel bad today, the lack of sleep doesn't help. Hope you are less uncomfortable soon.
Bearcub, the thought of Mildred ( my BC ) being cut out will get me to the hospital tomorrow even if my wobbly legs don't.
Dakota, you just so deserve better than him, sure you will find it very soon.
Lesley, wonderful gift you are giving to us all.
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@bennymuffins, recovering from surgery takes how long it takes, and everyone is different. Telling yourself you "should" feel different won't help you recover faster. Venting on the forum may help, so if you need to blow off some more steam, go for it! Keep taking your pain meds, that's what they are for. And if your counselor has given you some specific coping tools to use against hopeless/powerless feelings, it sounds like now is the time to use them. If not, maybe it's time for a talk with him/her on the phone to help you deal with them.
A big, but gentle cyber ((((hug)))) to you!
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Edith, as my surgery time approached, I did reach this point where I had accepted it and even looked forward to it (well, getting past it really). I have noticed all this new cancer awareness now too!? I don't know if it's always been there and I just never noticed, or if it's just really just getting more exposure lately. Again, you will be fine. I will be thinking of you ♥
Curveball, thanks for the support. The Tylenol #3 is not controlling my pain and because I have a history of ulcers I am limited in what painkillers I can take. Because I was sleepless and in pain this morning, I had a mini-meltdown. I've since talked with the doctor's office and they're FAX-ing over a different medication for me this afternoon. I guess I just expected that after the cancer was out of me I'd feel better, but the ringing in my ears, headaches, etc are actually worse. I just keep telling myself that the scans were clear. Could they be wrong? Questions, questions, questions, fears, fears, fears, doubts, etc. I'm not getting my exercises done because I'm in pain, which is worrying me.
I got a call the other day from an old friend. She was just diagnosed with BC. My heart aches for her. I suggested she join us here at BCO, so as soon as she thinks of a username, she'll be with us.
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Benny
Please give yourself some time. ; ). Three days is nothing! I love your restless spirit though! It will serve you well in this process.
I also think if you have been under a great deal of stress those "symptoms" don't disappear in a matter of days. I would venture to guess you are still sorting all of this out in your head so the headaches and ears ringing could be stress, medications, etc.
I am certain the tests are accurate, so I am sure you are clear, but understand the natural worry. What was crazy for me was once chemo and surgery and radiation was over they sort of send you on your way. The end of "active" treatment ( so not the 5 years of AI's I am on Femara blech) was bittersweet. I did not love chemo, surgery, or rads but I knew we were doing SOMETHING....so when it all ends and you are on your merry way I was sort of like are we sure we got it all, that's it???
Three years later I still have moments but they get less and less and I am trying to imagine my big release of all the tension!!
You will get there!
Thinking of you today
Lesley
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