The Hermit Club
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Times Square
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Jazzy u are so busy and having a good time I just love it for you.
Good pic Mags. I'm glad u'r having a better day and that banana bread sounds so good, if it were laced with pot it would be better. I'm all for it. And yes we do come to the boards to get things out or just say what makes us feel better without hanging it on our families--they really don't understand it anyway, unless they've been thru it, my sister, niece, and cousin have and I hope and pray no one else will have to. And I no longer fight with it I take my pain meds whenever I need them without hesitation anymore. When it's daily u know what it's like and I'm no martyr.
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Hi hermits- what a FUN day we had in NYC. I will tell you I really did not want to leave, I could have stayed several more days but it just told me I need to get back there to do exactly that, maybe next summer.
Took the train down early and met up with my friend a bit before 10 a.m. We immediately went over to get in line for the half price tix for a matinee play and decided on the musical, Once, which was SO good. More on that in a bit, and then we were off to my FAVORITE place to eat in NYC, Carnegie Deli. Kathy and I have gone there for years during our visits there and always share their open face Reuben. This is a $28 sandwich that is HUGE and even if you split it, you are still stuffed at the end. Photo attached that also unfortunately profiles my girls and stomach roll. The later only grew in size after that meal.....
I also did a bit of shopping, picked up a few NYC trinkets for folks back home and my sister who is here in CT with me. I was on a mission to get some new makeup and Henri Bendel and went to have a nice NY style make up job at that store on 5th Ave. My friend and I had done this years ago and went back to have another make up experience there, and I looked like a new woman after that. Came away with some nice products too.
The absolute highlight was getting to see a Broadway show. We had decided on three musicals we were interested in and she recommended this show called ONCE that is about a guy and a gal in Dublin who meet and end up following a dream to become musicians. Everyone in that show played an instrument, sang, danced and could act well too. So much talent in this performance, I have always felt people that do live theater are the most talented of all, as they have to do that performance consisently over and over twice a day for months if not years so times. We just loved the story and the music was incredible. We both came away with CDs from it too. It was a good choice as we have a shared love of music (we met here in CT years ago as violinists in local community orchestra).
A little post show noshing and back on the train I went. I was pretty tired when I got back here yesterday and a bit stiff today from all the walking and running around, but I did it!
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Here is a clip from the show we saw. Not sure it is the exact same actors but loved this song. Enjoy!
http://www.youtube.com/watch?v=pUKzDPMurCc
Teka- having fun is my specialty in life!
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Oh Jazzy, so glad u had such a good time. And I love reubens , on of my favs. And that one looks delish to me and big enough for me only---Wow 28.00, well it kind of looks worth it. And the musical had to be great, u'r going to come home more tired than when u left, but enjoying every minute of it.
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Oh man. Nothing like a real NYC deli Reuben. What a treat, just looking at it! Hmmm. There's a corned beef in the frig.... Nah.
So glad you had a great time, Jazzy. Thanks for sharing your adventures with us hermits stuck in our recliners... But I have had my share of adventures, can't complain.
Cami, did you hear about the cancer patient who went to jail for growing 6 pot plants to treat his cancer? In his trial, the judge ruled the guy could not tell the jury he had cancer and that's why he was using it. So of course they had no choice but to find him guilty. At his trial he sat wrapped in a blanket and I guess no one noticed that. As a society we have collectively no compassion.
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damn wrote a long thing and it is gone.
Mags hang in there I get it...
Lily QOL is very importasnt to me...
Teka.....hugs
cammie, are you still working?
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Mags NO I didn't hear that---The Justice system is just as wacky as the Government, that poor man, and if I were on that jury I would have said not guilty anyway--I know I'm so bad. Having cancer would have been his mitigating reason to act. And to hold everything from the jury is so wrong, I believe if someone is on trial the jury should know of past things about that person, not to prejudice the jury but they should be informed as to the type of person that is sitting in the courtroom. I realize people can change but as a jury u have the right to know if it's been long enough for them to change. More people go free because of this and they are guilty which comes out later. I watch to many crime shows--reality ones too. Sorry about the soap box I get started and can't stop. LOL And I just sent a letter chastising the Governor of my State so I'm in a political place right now.
no threats of course, just disgust.0 -
Cami, when you write to the Gov, just Give Him Hell! He needs a good talking to, don't they all?
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Hi Hermies, Everyone sounds like they are doing their own thing -dealing with life and our situations.
Jazzy, it sounds like you have a room I could have fun in. When I go traveling, it's the room that makes the trip. I love luxury. It's good my son works for Marriott. Glad you had time to visit your mom's and dad's grave sites.
Well, I just got back from my MO and due to all my SEs(bone and joint pain, extreme exhaustion and fatigue and the osteopenia), he has decided to take me off the anastrozole for 6 weeks to allow my body to flush it out and then he will reassess and put me on another med- he said he had a couple he could consider. When I ask about stray cancer cells on the loose for 6 weeks, he said humorously, don't worry about that because that's what he's for. I will go back to him in August.
Earlier, my PS also put off my final implant revision until after September until we get to the bottom of why I hurt so much on my implant side.
I am an anxious Betty -and with everything on hold It doesn't make me feel better! All I can think of is -WHAT IF????
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Hi Dwill, don't think WHAT IF??? Think when this is over. It really takes a toll on u when u go thru implants or whatever it just draws everything out I think. I am sorry u'r going thru all of this, I know how it feels. I hope u get a med that gives u some relief.
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You are so right Camillega. I need to learn how to get beyond getting stressed out about everything. My anxiety is ridiculous. Last week, one night , I could not go to sleep because I was sure I was going to die that night from a stroke or something. I would fall asleep and wake up shortly later gasping for a breath. I did not get to sleep solidly until 5:30 the next morning. I live alone and don't share this with friends or family because they wouldn't understand. My oldest sister just told me yesterday that she thought I was mentally stronger than all the siblings. She said I handled the MX and got right back to work and living. Of course she lives 400 miles away and doesn't know what I go through day to day. My friends on the other hand have stop inviting me to their outings. I find out about the outing, afterwards I think they are tired of me saying I am exhausted and hurting. Okay, now I am rambling.
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Dwill- it sounds like your quality of life has been seriously compromised by the anastrozole. I am glad you are going off of it, and going to try something else. The MO's goal is to find something that you can "tolerate" so you can do all you want and need to do, otherwise, they know women will stop taking it and not completed the 5 years. Also know the AI's are cumulative so they have been in your body awhile and will be in there helping as you come off and then begin something else. I remember asking my doctors about those gaps between treatments like surgeries and rad treatment, rad treatment and the AIs too.
It sounds like you may also be having some panic attacks (I used to have them years ago in grad school, woke up middle of the night afraid and having breathing problems). They are awful as they feel like you are just coming apart. You may want to talk to your MO about this too or PCP to get some help there.
I am sorry your sister is not more understanding. No one knows what it is like to go through this stuff and to deal with the SEs day to day. Yes, we are strong and can often get back to what we must do, but none of us are who we used to be.
I am glad you are here to share this with us. Let us know how else we can help you?
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Dwill I agree with Jazzy u sound like u had a panic attack and are having them a lot. Please talk to u'r Dr. they can help u like u wouldn't believe and u don't have to have this heavy feeling anymore. And it's true day to day it all different than what it used to be---and yet if u have a couple of decent days it's almost scary so no we're not the same, but some thing u can get help with and don't be afraid to take these meds, u'll feel more mentally balanced.
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Jazz.......be still my heart.............Reuben.....my favorite sandwich.............
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Dwill thinking of going off Lerozole and see what happens.......at least a vacation from it.....I've had it...........can't handle much more.......tired trying to act like the "brave little soldier", while everyone but you ladies know that is bullshit..........we hurt, and hurt plenty......
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jazzy, ducky,cami,and teka, thanks for the support, understanding and your ability to empathize and share your own struggles. Ducky-God knows I understand you, too. Sometimes, I want to get mad as hell but what then...
Teka, I eat dinner every Friday with my single BFF and sometimes a few others. Last Friday, my BFF and I had dinner. I asked her if she was going shopping afterwards and she told me she was going home and relax. Instead, she left and met another friend of mine and went to a third friends birthday party at a bar and stayed past midnight drinking and having fun. They had it planned. Mind you I am friends with all these ladies! Well I only found out because my BFF is losy at lying and when I asked what she did the next day she admitted she went out with the others. When I asked why I wasn't asked, she stuttered through some dumb explanation but never saying why I wasn't asked. It's been that way all summer, my friends go to tea, lunch and movies, each other's house and only tell me about it afterwards. I thought about confronting my BFF but decided it wasn't worth me making myself upset. I just think they are tired of having a sick friend around them. It takes to much energy to be mad at someone when you are ill. I just withdraw and live in my own world. I do have family that visit me and do things with me, dinner, trips, etc. My three sons, DIL and two grandkids are very loving and attentive. THEY keep me somewhat grounded.
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Oh Dwill there actually could be another explanation, they know u'r not feeling well and think u'd want to go and it would be to much for u--people do think like that and think they they are being kind,
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dwill a lot of your emotional symptoms could be anastrozole, i was a mess on letrozole, and taking a break has been shown to be beneficial in terms of counteracting cancer and may be recommended in future. If you dont take a break then you are far more likely to get side effects from the new drug. Letrozole and anastrozole work in similar ways. Aromasin works in different way but with same effects and i was told this most likely to suit me better given my poor QOL on letrozole, and it is different for sure,
Ducky great to hear you considering changing too, we deserve a QOL its hard enough already!
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Dwill- your friends going out late and partying probably don't fit with your life style these days. None of drink much or at all to keep down reoccurrence risk, and I have noticed changes with the partying crowd in my zone with respect to what I get invited too. That being said, it does not feel good to be excluded.
What I decided to do awhile back as things changed for me is to tell the friends (some who know about my BC and some who do not) what types of things I am interested in doing with them socially these days. You unfortunately have to educate your community on your new normal. I let my people know to 'please include me in outdoor activities, concerts, travel opps, movie outings, etc. but don't expect me to go out late, to drinking parties, or do a 50 mile bike ride with you." Your friends are trying to decide for you what you should be included in or not, but maybe think about owning your social opps that and telling your friends what those are. Try making a list of things you enjoy and then let them know.
I have had to also distance myself from friends at points when I need to make these changes in my own life and with my relationships. Maybe let yourself come off the meds and start feeling better, and then approach them. You are really struggling right now and wish for you to only feel much better soon. We are here for you.
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It's begun. Shave tomorrow.
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Mags- Teka has a good point, do you have someone who has experience with hairstyling and working with cancer patients? My sisters hairdresser did and helped her as she lost her hair, and as it was coming back in. My sister wore a wig for a long time at work, and we found her a cute baseball cap with some little hair hanging down that was good when she went out to the grocery store. A good stylist can direct you to a wig place for options should you want that.
That being said, I am sorry you are loosing your hair now.
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Dwill I can't add to anything Jazzy said like Teka she's 100% right.
Oh Mags it'll be back, this is a hard time for u, but u'll be allright--u'll find some cute hair things to wear and u wontt miss it after a while.
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jazzy, cami, teka, and Lilly -right now my feelings are raw. I just feel left out and hurt. Eventually, I will have that talk with my BFF.
Lilly you are right. I suffered from clinical depression before the anastrozole. It became worst on the Al and with the fatigue and exhaustion-plus like jazzy said maybe there are other reasons they exclude me. I have turn them down before for other activities but then, I was really hurting and sore following surgery. I really think know one outside of this illness know what we really go through.
However, like Teka said, they could have told me. Dammit, we are not in high school even though most of us worked together at a school. So, I called my BFF last night, still not mentioning the latest incident. She was at another friends house playing cards. Usually, she don't take calls when she's out but last night she took my call- telling me she was there but she hate playing cards and was getting ready to quit and go home. I think she is feeling guilty. If she would just tell me, "why!" I might be hurt but at least I would know why I am being left out.
Now, I am on a break from anastrozole, maybe the fog will lift. It did once before when I had a three week break.
Mags, I am sorry your hair is falling out. There are some really gorgeous scarves, hats and wigs out there. I picked up a catalog from my oncologist office. Heck, they had gorgeous scarves, hats, and wigs in that catalog. I want to buy a few just because they are adorable and I hate going to the hairdresser every two weeks.
(Hugs to you all!)
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Mags, I am thinking of you.
dwill, I understand your raw feelings. One of my close friends said she would call me to set up a lunch date. She never called. I sent a "thinking of you card" to her because she was in a tough situation at work. No response. Since I felt I had been the one calling for some time, I did not call her after she said she would call. I am hurt. I hope we both get answers to the "why" friends change in relation to us after our dx.
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This is so sad, but in my way of thinking true---Not for all, but some people can't handle the idea of cancer, or being around it, not cuz they think they'll catch it but because they just can't handle the feeling it gives them. One of my friends is like that but we've talked about it and so from then on we never talk about it, and I accept that she's just like that not just with me, but she can't deal with it. But we still talk and see each other, no problems====in fact I'm going to her GS's baptism in a couple of weeks. So it's hard to tell why some people shy away--she's the only one and we got this figured out right away,--and we're fine.
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I have an appointment to see my hairdresser in the morning for the shave. He and his wife are semi retired, their shop is an addition to their house, he's been cutting me for ten years and is a dear friend now. DH is driving me there and if I'm up to it we may go look for a wig. I told him I wanted him to pick it out since I don't really care and will probably just wear a bandana around the house.
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Mags u'r DH is so sweet and I bet u'll get a really nice one. Don't forget the Cancer Society has wigs, and I got a great one from them, altho I did usually wear hats, and scarves--it's nice to have one wig that looks nice.
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Hermits- my time here in CT is wrapping up and we head to RI tomorrow for the family reunion. I will check in again on the other side of the weekend of family and as I head back to NM on Monday.
Wishing everyone here a good weekend with relaxation and something nice for each day.
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Cami, the cancer clinic where I go has a contract with a shop that has wigs & foobs & stuff and they will file the insurance as I have a rx.
Jazzy, have a great time with the family, and a safe trip home.
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