Why was I stronger DURING treatment than I am now?
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Tim-I went to a MO who worked at MD Anderson for 16 years and is now in a small center in Texas. Feel free to pm me if you have other questions. So glad the radiation went fine for you! How nice to spend time in Central Park
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Tim, good to hear from you....Central Park & Carneige Deli....love NYC, did you get pastrami?
Happy the radiation was easy, hang in there, the finish line is out there, sometimes hard to see...
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Thanks hole, I keep thinking of that finish line ...hope it's a good one.
My husband ordered pastrami and I ordered corned beef and we thought we'd split. I also got kishka and we split that.
Everything was fantastic but of course much too much. They say if you can finish a sandwich they haven't made it right, they put a pound of meat on every sandwich! We threw most of it away but that was fine, we didn't make ourselves sick. And nothing there is really good for an ulcer!
I was born in Brooklyn at a time when there were lots of delis. I always thought of the Carnegie as a tourist trap and looked my nose down at it. But darned if it isn't great! But so expensive! At this point I'm not much into economizing. I keep thinking "less for the second wife". ;-)
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Tim, humor in tack, good sign.
The sandwiches are insanely huge. And they frown on splits. I remember when I was in there, all the employees looked like they belonged in the Mafia..lol... What is a Kishka ?
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Tim,
I went to New York (approx 5 years ago now) Wow, what a place, just loved it! and as a Brit, made to feel just so welcome. I hope to go back one day. You sound to be doing well Tim, I am so pleased to hear you had a great time with your hubby is Central Park (went there too).
Lots of love W xxx
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Tim: Take a bite out of that Big Apple for me. Just love the energy of that city and Central Park is so wonderful. You are in my thoughts as you seek the information to make the best choices for your self. It continues to crack me up when we respond to Holeinone's posts and start with....Hole,....or....Thanks Hole. Makes me smile.
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Maybe they wouldn't have liked our splitting one sandwich but we foolishly ordered two so we paid just as much as if we hadn't split. The waitress we had was not tough at all, I kind of missed the rudeness that's supposed to go with the experience.
Not sure you want to know what kishka is, lol It's the intestines of the cow, cleaned out and stuffed with...stuffing. It's delicious and for me it's real comfort food which was why we went there right after the radiation.
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Winter, there is just no place like New York! I loved London too. But we sat down in front of the ice skating rink, yes they were iceskating in the warmth and the sun. Two other couples sat at the same table and I noticed that one couple was speaking French. My husband was born in Paris and as they were poring over a map and seemed lost I asked him to help them. They were from Belgium. The other couple turned out to be from Argentina! We all had such a good talk!
Since I grew up there seeing it all again is more than just being a tourist. I feel safe there. It's home...still.
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Yes, Purl, it cracks me up too! Especially as we're discussing vaginas!
You are so right about the "energy". I've always felt it, even as a child. It's electric!
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Julie, that's a good idea. The Sloan drs seem so rushed, the local dr is different.
The odd thing is that when I had the breast cancer everyone I went to in chicago said NOT to do chemo, just the arrimidex. Only the Sloan onco said do chemo. With this it's the opposite.
I did look up the cancer website and it seemed to say no chemo for my stage. I think it's the grade that's really scary...3.
I'm so wiped out. It could be the radiation. It could be the ulcer and the anemia. It could be getting up at 5 am to catch an early flight. It could be that I'm still recovering from surgery. I don't even want to think about the worst it could be. But right now all I want to do sleep!
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Tim - I am pretty sure the exhaustion is all of the above - with the exception of "the worst". Radiation, travel, surgery - that is enough to make me tired reading it.
So glad your NYC trip was fun and just take your time with the chemo and get the doctors all talking to one another. I found that it was really important to get "all my teams" talking.
Keeping you in my thoughts.
Take care everyone else - so great catching up with you all on this thread.
Julieho
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It's after 4 am and I'm re-reading these loving and understanding posts., You all warm my heart so! Having a hard night.
So hard to live with this level of uncertainty. Waiting for the other shoe to drop. Don't know who to trust.
Some friends have dropped away. I don't blame them, I'm not much fun and they were there for me through the breast cancer and beyond. I'm remembering...I wasn't there as much as I should have been for people in my life, people who were sick.
I understand now what I didn't understand then. I suppose that's the best we can do. Learn from mistakes.
Other friends want to come over, want to get together, and I just can't. It's too much of an effort. My house isn't up to snuff.
I just want to be alone. Yet being in this position does get lonely.
We have to go back to New York Monday. Two more treatments but I don't think I will be "done" as I thought before.
The surgeon told me for the first time that there was lymph invasion into the wall of the uterus. He said it's not "likely" it got out but it's a risk. He had to check the path report while he was talking to me. The local onco told me that each dr concentrates on his specialty and I guess the surgeon felt he did his job when he stopped cutting. He never spoke to me about the path report! We waited and waited and then called after 10 days! The nurse said I was clean and only needed radiation, period. I guess that's their formula there. Well, no sense in dwelling on it now. It will only make the ulcer worse! lol When it rains it really does pour!
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what's up, tim?
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Middle of the night jitters that eased up with the sunrise. I feel like such a complainer.
Thanks for asking kathec.
I'm feeling hopeful at the moment. Good, good wishes to you and every wonderful person on this thread.
Your kindness is SO appreciated!!!!
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Tim,
Thanks for checking in, I was beginning to worry too. Never mind being a complainer! you most certainly are not. Just look at all you have been through.
Glad sunrise, brought peace for you.
xx
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Tim: Hope you sleep better tonight. Zzzzz I know about those middle night jitters. Thanks for keeping us all updated.
((((Big Hug)))))
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Purl, that's so beautiful, and such a comforting thought. but when i wake up in the night from now on, i am keeping the computer by the bed to check and see if there is someone who needs to talk! Thank you tim, for coming here.
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You guys are incredible! I have no words,...Just thank you!
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I feel like this is one of the few places where I feel safe complaining. People who haven't been through it, or close to someone who's been through it, don't get it. My husband gets some stuff but not others, and has expressed that he really doesn't want to hear it anymore. So please, complain away! Who else are you going to talk to in the middle of the night?
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So true, that is almost word for word what I told my husband last night. You people are the only ones who really get it.
A friend of mine wants to go out to brunch. I told her right now my schedule and my state of mind is so unpredictable that even though I WANT to have something to look forward to I'm not sure I'll be up to it. She said "Gee, this thing has taken over your whole life!" It bothered me all day. I told her that I hoped the treatment would SAVE my life! Then, when I told her I could make only tentative plans and that I hoped she would understand, she said "as you wish". I said "If I had my wish I would be well and be able to plan to go anytime." When I first got the bc and decided to go with chemo she said "you always go with overkill".
Then I stopped talking to her until treatment was over. Now she tells me she didn't understand.
Anyway, what I told my husband yesterday was that only you guys ALWAYS say the right thing!
BTW, slept like a log last night!
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I love all of you ladies. What support. Funny how we see a deleted post at 4:30 AM and we all know intuitively what it is about.
You are all so right, this is the only place I feel everyone gets it.
Tim, reading what your friend said to you, both recently re brunch plans and earlier when u were undergoing chemo just makes me so sad and a bit angry.
The "overkill" statement was just too much. I have found that cancer and treatment not only was a way for me to go after the disease but it also helped me see who in my life is toxic and slowly rid, or reduce dramatically my interaction with those people. I think I would put this woman on my list.
And the whole, cancer is your life crap is such bull shit. We are all living lives and doing our best but this disease, treatments, side effects are huge, at least for many of us. Please know you are doing fine, in fact taking care of yourself by not making plans ahead of time that you may not be able to commit to is a sign of self care.
Keep it up.
Love to all of you,
Julieho
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thanks for that julieho, that is spot on! i know my man was good to me all through it, even tho he is squeamish, but even he expects me to be strong and in shape already, and is really done with hearing about it. i just come here, or go and talk on phone where he cant here me. i am better, though not the same, one thing though, he still will wash the dishes at least if i ask him, and sometimes when i do have doc appts,errands, etc he still will do a chore! wow! i am having lunch with one friend this week, who really did absent herself from me during treatment,, but i know she has a huge fear of this disease. she is still sweet tho and can make me laugh my a$$ off, and i love her no matter what, and she is stilll in the freshness of a new love relationship, so i do forgive her for that...but i did miss her during.
i so dislike making plans, cause the imp in my brain wants to do whatever it feels like doing, whenever it wants to, and prefers the day to be wide open!
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Friends,
Scaring myself tonight reading up about breast cancer...... Not Doc Google but proper research. Sometimes I just can't help it, (it's as if I want to look in to the future). Then I wish I hadn't looked.
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WS - don´t!!!! It does not help you or anyone and research is just that, its not necessarily applying to you.........remember how everyone says cancer is an individual disease? Whats right for you may not be right for someone else. And research is years out of date........
I am annoying myself too as having way too many PTSD symptoms again as going to be meeting more family friends I´ve not seen since diagnosis and freaking out about it........don´t know why, its led by physiological symptoms and affecting sleep etc.........and I am back to being tearful and stomach churning over nothing.......this BC stuff just SUCKS really sucks, I am really pi--ed off with myself and the whole damn business, sick of feeling less than I was, sick of feeling abnormal,etc etc
Hugs to you
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Tim, with a "friend" like her, who needs enemies? Julie, so true. Kath, learn to love that imp. She's your new BFF.
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thanks, spookiesmom! i do love that imp! she is me! i am sorry, lily, that you are having a hard time again right now. i think its because we are smack dab in the middle of after treatment relief, anxiety, and kind of feeling what the hell happened to a year and a half of our life? plus i know that you had a more complicated time of it... so you know that you have had good days, and will again. but that crap sucks, how it haunts our minds and lives, sometimes. i am just trying to get things done, and stay busy, till i fall asleep. er, pass out, more like! love you lily.
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Hey Gals -
I've been away from my computer for a while, and just came back to this thread with fresh eyes. The first thing that jumped out at me was that TIm had 13 hours sleep and felt great. I'm so thrilled to hear that you woke up with a smile on your face TIm, and I couldn't help thinking that the very best thing in the world would be to have at least ten hours of uninterrupted sleep every single night. We've all learned to live with the worrying, and waking up at four in the morning (Winter, stay away from google!) but the reality is that we're all friggin' exhausted. In the race to 'get back to normal' we seem to have overlooked the enormous sleep deficit - and how the new normal doesn't include feeling carefree and relaxed.
Last week I went to visit a friend in France. Being away from home on my own I fell asleep every time I had the chance. I didn't think I was tired, but I guess I've learned to live with tired, and every time there was a time to lie down - I took it. I spent half my trip asleep - and it was fantastic.
It's hard to make sense of all we've been through, and are still going through. I think it really takes it's toll. I think it's easy to underestimate the damage and the mental reconstruction. It's such an ongoing process, with a mind of it's own and it makes me crazy that there are partners out there that don't want to hear about it. How can it be 'enough' while we're still in transition?
Tim - I think it's great that your were honest to your friend about your ability to plan. Too bad she was so bitchy. In my books, 'as you wish' is not an appropriate response to a friend who is doing her best to stay sane and healthy. I wish she'd been kinder to you, cus you certainly deserve it.
Lilly - I'm sorry you're feeling so crappy. And yup, this whole thing sucks. But you are the same person today that you were before the diagnosis. Nothing less. You may have been pushed to your limits, and your body and mind might have been rearranged, but everything that makes you whole is still in there, waiting to be put back into a place.
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My first year after treatment I slept 9-11 hours a night (12 when I had pneumonia). And I still wouldn't really get started until about 10:00 in the morning. It takes a long time for the body to heal from all this.
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Reading your posts today has helped me.
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Julie, as usually you SO get it. And I have good friends who invite but always say "no pressure" and I'm so grateful for that!
How can anyone not understand the pressure I'm under? We all get sick, even the flu, and we don't feel like being social at those times. That friend will soon be moving cross country so there will be no more brunches and perhaps that's why she was so insistent, but I'm just making an excuse, she's that way.
Yes, we have to protect ourselves. I just got back from New York. My husband was sharing some photos of our grandchildren. I don't know if you guys remember but when I went on chemo my son got a dog. I'm hugely allergic to dogs. Chemo made it difficult to breathe as it was so getting the dog was a way of saying, it seems, you can't come to the house. You can't see your grandchildren, who we were very close to. It broke my heart and I cried my heart out every single day because dogs live for l5 years or so and that's a long time. Every day my husband cursed my son. They would talk once a month or so. My son would call on his father's cell so he wouldn't get me. I emailed him and begged him, telling him he was breaking my heart. His reply?
"Not my intent". Period.
So every day my husband said "He doesn't care if you live or die. Forget him. We'll move away and forget them." And every day I'd say "How can I forget them? My son and my granddaughters who I took care of from the time they were babies!" Every day that he said that my son didn't care it was like twisting a knife in my heart.
Eventually, after I was off chemo, they got rid of the dog. I never in a million years expected that and they said it was too much bother to take care of.
Anyway, we didn't speak for about 2 years. At least I didn't. I thought my husband was with me.
So imagine the shock, after my radiation treatment, feeling so exhausted, he takes out photos of my granddaughters birthday party! He laughs and said
"She was so happy! They hired a magician".I was confused. I noticed different drapes on the windows. Drapes I'd never seen.
Turns out that my son had invited his father, alone, to the party. AND HE WENT! And he kept it a secret all of this time...almost 2 years I think. Now I'm thinking that the whole time that I didn't see my grandchildren and my husband was cursing my son, he was secretly going to see them.
I told him I'm done, I want a separation. I just have to figure out how.
With 2 cancers and an ulcer, he is killing me, literally. I don't want to die like this.
He likes dividing and conquering and our whole family is split. Three kids, my life's work. My body cannot hold up under this amount of stress.
I'm just thinking of what you said about eliminating toxic people.
I should have done that a long long time ago!
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