The Hermit Club
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Love the cartoon - definitely sharing that one with my DS#3. She is the real hermit. Lives off the grid in a one room cabin in the bush in northern ON (cold & snowy in the winter) with solar panels, no indoor plumbing, cuts her own wood etc. I like quiet, but do enjoy my comforts.
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I can relate to the no money scenario. I work for local government and haven't seen a raise in 4 years. I live alone and have the usual - car payment, mortgage payment, etc. - and then, wham, here comes all these damn medical bills. So, like all of you, I don't go out much, enjoy my cats & fish, knitting and my BCO sisters. When you write it down and read it, it looks a little pitiful.
Spelling has also become something I used to do well. Now I find myself questioning words as I type them...damn frustrating!
bgirl, I'm hoping you get good results from your biopsy. Be sure to let us know what you find out.
Sissy - I've been thinking of you and hope your radiated skin is healing.
Beautiful day here today in Virginia!
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Journey hahaha u'r right it does sound pitiful when reading. hahaha. We can't do alot about our situations, but one thing for sure we can come here and we all underdtand any frustration we have about everything. So that helps some. Ugh I'm haveing a bad day so far---Violent Diarrhea--I have it alot, but it knocks me out--I was overconfident I didn't have it for about 5 or 6 days so wore reg. underwear--I should have known--LOL So I'm not tepting fate anymore back to the depends hahaha
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Hello fellow hermit-inas...yes, I just made that up.
DH is wanting to go to dinner and a movie tonight with the kids...I guess I should rustle up some enthusiasm and go. We have several restaurant gift cards a group of my internet friends sent so might as well use them. Can't be too hermity this week. Have Herceptin tomorrow - if they give me benadryl, it may well kill me with all this other stuff I am on - and then PS appt Wednesday. And I need to call BS office to get my second opinion RO appt. I would like to know where we go from here and until I meet with another RO I won't know.
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klt It seems like it never ends sometimes---but u should try to go tonite and do enjoy u'r family and u'll be knocked out anyway tomorrow.
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Hi everyone....ahh, Benadryl, the drug of the gods, lol! My fav to take to go to sleep at night. Well, guess what, I lost my oncologist! He moved on to another practice without telling anyone! I was really nervous, but have since met the new doc, and absolutely love him. I started out a question with " so tell me your view on my cancer", and he replied, "you don't have cancer"...... Done deal, I love him! He calmed all my fears for the time being....
Getting my Herceptin tomorrow, then last week of rads.....under the t.e. and under my arm is where I hurt the worst.......angry red, but no blisters or breakage. So sitting around being a hermit this weekend, babying the skin, and dealing with a cold! Hope everyone is doing well this beautiful Sunday, thank you all for being great Internet friends and hermits, lol!0 -
Sissydi I'm so glad u have an onc. that u really like---and I love his answer.
U need to baby u'r skin as much as possible, and Good Luck with the cold. ick
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Kltb, that's awesome that you feel like going! My MO stopped the benadryl when I went on herceptin only. You might want to ask if they keep it with your pre meds.
Sissy, your new onc sounds great! Yay for the last week of rads!
Camille, I'm so sorry about the diarrhea.
I'm feeling cruddy today. Not sure what's going on. I did start my period so hopefully it's just that. See my onc tomorrow then herceptin Tues.
CS, if you're around sending you good thoughts. Surgery is Tues right? Hope you guys are doing well.
Journey, when is your exchange? I still need to call my PS to tell them one way or the other about the nips.0 -
Kltb (I nevver get these letters right, LOL) when I was just getting herceptin I asked if I could have benedryl too and my onc said OK--I loved it. I have never taken it as apill or anything??? I really felt like it was just going into my blood relaxing me so much, and I'd announce it to everyone I'd be yelling oH this is wonderful, on and on. The nurses couldn't believe I never took it before and I never took it again, I don't know how the pills are at all, who takes the over the counter ones?? tell me how u feel?
Markat I can tell u don't feel well, maybe it is u'r period. Do u get it regularly now? I used to take blackberry brandy just a shot or 2 and it would make me feel better, well I told myself that I guess. But my mom used to ive it to me when I was youn??? So that's all I knew. LOL Feel better and just rest.
I still have my D and it's knockin" the hell out of me--I'm drinking like crazy but I'm loosing it just as quickly--I took my meds for it, but they haven't kicked in yet. This disgusts me. I can't do anything but sit near the bathroom, which I do anyway hahaha
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So many new people! Welcome, fellow hermit friends.
Hope you have fun tonight, kltb04! Good luck with the herceptin/Benadryl & doctors this week.
Are your rad burns getting better, Sissydi?
Camillegal and markat - I hope you guys are feeling better soon!
My surgery is Tuesday. Sooo not prepared, mentally or otherwise. My friends threw my breasts a going-away party on Friday (which was a lot of fun). But I had intentions on getting things ready around the house, and yestereday busted my butt around this house, then over exerted myself. So today I'm lounging on the couch trying to get some strength up. I feel like i'm getting a sinus infection, but I tend to do that when I'm stressed. No idea why I'm stressed...hrmmmm.....
I called the hospital Thursday to begin registering for my surgery. My favorite part was when they asked me to bring a list with me of all the drugs I've been on the past six months, along with doses. Ha! I don't think I have enough paper in my house to write it all down. Heaven forbid I miss one...0 -
Oh CSmommy it'll all be over soon. and that was a fun idea about u'r party. This is nervewracking thos just tink by Wed night it's all done. Oh and the list hahaha--with computers now everytime I go to the Dr. I get a print out of my meds, so I keep that handy always but it's a pain to make that first list--remember---the name--dose--how many times a day. And take all u'r bottles out and once u put it down move it to the other side cuz I kknow for me they all sound the same with these huge names. Good Luck try not to overdue the next couple of days--u want to go in strong and rested so be very kind to u'rself.
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Well, we didn't go tonight - it just seemed like an awful lot of effort to do the makeup thing and get dressed and all...then oldest dd had seen the movie with friends that youngest dd wanted to see so we would have had to split up and each take a kid to a different movie. So we said forget it! DH went and got pizza and we are getting caught up on the last few weeks of Survivor.
Sissy - sounds like your new MO is going to be great so maybe it is good that your other one left! Kind of crappy for him not to tell anyone though! Glad you are on the last of your rads this week.
markat - I asked last time and they still insist on benadryl w/H only? I am like if I haven't had a reaction YET I shouldn't have one now - they cut it to 1/2 dose. I guess I will go in there doped up (10 mg Hydrocodone and a muscle relaxer) and let them know I may pass out if they insist on giving me any! Since you are getting your period, are you going to get the shot or whatever it is to suppress it? Have we had this discussion? I forget, lol!
Camille - no one ever gets all the letters right - some people misread it as kitt or kilt - it's my real life initials...if I am on the only K in our little group we can go with that, lol. Sorry about your "D" problem - that just sounds miserable.
CSMommy - good vibes for your surgery - I know how nervewracking it is. Truly all I needed at the hospital was my phone and charger, a change of underwear and I think I brushed my teeth once. I wore the hospital gown the whole time and the bathroom was in the room so I never had to walk the halls and if I had, they have other gowns to put on the opposite way to use as a robe. They put slipper socks on me so I didn't use my houseshoes. When it was time to go home, I just slipped on the clothes I wore there - a zipper jacket and sweatpants.
I think they called me two or three different time to preregister me - I'm like how many times and how much information do you people need???
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Sorry you didn't get to go K. That did sound like a lot. I told the nurses that I didn't want the benadryl and they told me to call my onc. I just didn't take it that first time and then my onc took it off my pre med list. I hate ben, makes me so sleepy.
I have been getting my periods regularly since like 6 weeks after my last chemo. I don't get the shot because I think it's better to have the period on Tamoxifen. I think my onc said I will probably do five years of Tamoxifen and two years of an AI. I'll still only be 36 after five years on Tam, so who knows?0 -
Wow markat I always forget how young u are. Or did I already know? U poor girl going thru all this. It' has to be really terrible for all of u guys that are so young and this is such a life altering disease for all of u--I' so so much older and it's easier on me for that reason. I'm truly sorry for all u youn ladies.
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Hello fellow hermits!
I have been in hermitute, best place for me...weekly Taxol and blurry vision keeps me off the computer. #7 coming up. Spelling, I think most of my posts are edited as I forget spellcheck then hit send. Chemobrain is my constant companion.
*waves* to Bgirl and Journey4life
Kltb...sound like you are recovering well from surgery, taking it easy which it great!
Camillegal...oh shit...literally..hope it eases up for you soon. Love the jokes:)
Sissy..me too on the benadryl
markat.. wow, you are young!
CSMommy...sending positive healing vibes your way, good luck tomorrow
Off to bed, just wanted to say hi to all~
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Whaever I'm in hermatude too today--I was supposed to go out to lunch but had to cancel Oh well It's such an effort when I don't feel well to go anyplace. God I've gotten so lazy, I hate that--Oh well I've got u guys. And young markat.All of u on chemo--take it easy and stay out of crowds anyway u'r immune system is so compromised, so this is u'r time to take special care of u'rself.
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markat - i think I am supposed to start tamox the next time I see mo in Nov. I was nowhere near menopause before chemo pause hit. Still regular as clockwork at age 39. Guess we will discuss it all then.
Whaevah - good to see you. Keep on keeping on with the chemo.
Camille - loving that picture! I felt that way this morning. The first day post surgery I have gotten up and helped with the kids.
Herceptin only was fine today. They cut out the premeds thankfully. Still oh so sore and in pain sometimes. These damn TEs better be worth it in the end.
Re: spelling and grammar. It's just too much trouble to check on my phone. I am usually a stickler for those things!0 -
Hi ladies!
Camille sorry you had to skip lunch today. I'm not sure I'm going to have any friends left after this year. I was always one to drop everything and go meet someone for lunch or dinner, or plan the parties. My friends keep texting me to do stuff and for some reason they don't understand that I don't want to lol. One of them was so confused when I told her I couldn't do lunch tomorrow because I had a herceptin treatment. She thought I was done with cancer. Oops. I had my onc today and the girls had checkups and flu shots. Then I had to cart them around to girl scouts and Catholic Ed class. I'm beat! Tomorrow is the infusion and then the big support group-pharmaceutical sponsored- dinner! How exciting
My onc kinda suggested that I keep my port in for awhile...that was a bit of a drag to hear. She was really coy about it, "it's not a big deal to leave it in for a year or so. We can flush it on your checkups." I think I agree with her, except for that pesky insurance deductible that I somehow think I'll get out of next year. She also tried to explain to me my lymphnode situation. I did have a mass in my axilla that responded to the neoadjuvant chemo. I asked her why I didn't have rads then, and she said it was because of the complete response. Then she went on a little rant about positive thinking and gave me a booklet for a Wellness Class. Alrightly then, lol. I'm sure my BS will have an opinion about the port, since she put it in. She is probably the rudest doctor I have ever met. I would love to ditch her, but she is a great surgeon.
CS, I'm thinking about you tonight and tomorrow!
K, glad your pre meds were cut! I hated my first Herceptin after the BMX. I was so sore.
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markat: I doubt I will either, I don't answer the phone if I don't feel like it
Most woman I know have kept their ports for an extra year. I wonder if it is standard?!
How wonderful that you had a complete response, that makes me happy.
So that makes you young AND healthy!! Yay! 0 -
Thanks Whatevah! I guess it bothered me because most of my chemo group got de-ported right away. It would stink to have to get another one on the other side if something popped up, not that I'm counting on that happening! Maybe I'm afraid to jinx myself.
I love that you all keep calling me young ;-) This crap has aged me. Not sure if you ladies have noticed that. I hurt everywhere and have wrinkles on the sides of my eyes. I'm losing about half a pound a week, when I used to be able to lose more. My nurse and I were joking around about yo-yo dieting yesterday. I laughed and said, well I hope it don't get cancer. They all started laughing. Poor taste, I know.
Not sure why I keep writing so much, haha. Maybe I should phone a friend
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markat - I have an appt with my MO tomorrow and I'm hoping he gives the ok to get the port taken out. Mine is a PICC port in my left upper arm and it has gotten almost unusable. Plus, all they do now is flush it and last week was the first time in quite a while that they drew blood. In the unfortunate event I need chemo again, I doubt they'll be able to use the one I have. Exchange surgery is 11/20. I think I've decided on 3-D tattoos instead of nips. I'll probably ask PS about it once more before I make a final decision. If I go that route, I hope I can afford Vinnie.
CS - when you feel up to it, let us know how you're feeling. (((hugs))) for healing.
kltb - love the "hermit-inas"! Eventually the TEs get tolerable but I have never particularly liked them. I hope I develop a fondness for my "real" foobs!
Camille - how's the big D? Hopefully gone.
whaevah - wavin' right back atcha!
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GM Ladies who don't answer the ohone LOL I thought I was the only one, that was that bad. OMG what have we become. Well let's blame it all on cancer,
Markat I know other people don't understand anything about this--My one friend said she knew someone who had brest cancer and they were fine and back to work in a year.???? Of course I'm glad for the woman, but how do u explain all the meds, SE ,and we all have different reactions to all this crap mentally and physically. U don't explain it that's why I tend to keep with people that do understand. Just like my stupid D I got tat when I was getting chemo and it never went away--they have no idea why--I've had every lousy test for this and all I get is u really shouldn't have this anymore. OK that's fine. All the aches and pains that are still here and don't leave. U know I could go on and on but we all know how we feel.
And I still have my port but it's been used so often--since I stopped everything--I've been in the hospital and it always used and besides they can't use my arms for anything so I'm glad to have it, it gets flushed and no one has said to take it out so I still have it now.?????
I'm moaning today I' sorry, but I feel like I'm getting my period, 1st I have nothing in there to get a period and 2nd I'm 67, but every so often I get this feeling in my lower parts-It must be eds maybe I don't know but I get that kinda weepy and crabby feeling I used to get. LOL Yes I do remember those days.
And I'm going to do my nails today with black nail polish--good time of year for me --so fitting. Oh if anyone still doesn't have their hair wear fun stuff on u'r head, I did around Halloween goo excuse too. I know I still have some goofy in me. Well quite a bit actually and that I'm thankful for. LOL
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Had to kick my hermity butt out of the house the last few days. Find it hard to motivate these days. Insomnia leaves me tired.
Sunday - memorial service for wife of my husband's friend. She was 57 and had a stroke - I guess a reminder we really don't know what the future brings for any of us. Monday - gyn apt. Endometrial biopsy was B9, it was about time for a little good news. But, now I have to decide about doing nothing, endometrial ablation for some QOL/symptom relief or actually considering doing an ooph/hyster to take care of the underlying problems. Bah humbug to more surgery, just so tired, just so tired of SEs, just so tired of cancer(mine, palliative care for my dad, everyone's) - oh that is sounding like a pity party today. Dragged my butt (and the rest of me too) to the Y this morning. Exercise is supposed to make us well and help my sleep. Not! It just seems to take some of what little energy I have. Mostly I go because I worked really hard to get my range of motion back and don't want to lose it.
Anyone else having trouble making decisions these days. Overwhelmed by choices and information. My gyn says there is no wrong decision, but how does one figure out WTH is the right one.
Sorry for the rant - my family really doesn't want to hear all the gory details of more cancer crap and DH just thinks I should make a decision and he wil be there to support me. Is it any surprise that we want to be hermits.
DH going out to dinner meeting tonight, so no making dinner and I get the remote. Feel a couch night coming on.
Camille - hope you are feeling better.
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bgirl--U know ranting is allowed here--so go ahead. At least u don't have to think of dinner and u can enjoy the couch--Wow are we exciting.
That is a big decision to make--good news for the b9, but u still have to do something right. And decision HA--I can't make any anymore so I know what it's like. Basically (I know this isn't a popular stance) but I just tell the Drs. just do whatever u think is best. Cuz i don't know anything anymore. And u've been out alot the last few days. so just relax and don't think of this stuff tonite. I tend to do that too. LOL
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camille- glad that someone understands, feel crazy some days when people think it is over now that "I am done treatment". I know I am not in your shoes, but so overwhelmed by everything that has happened in the last year. Had to get a newer car in May and my husband could not understand why it was so hard to decide. It doesn't feel over when the gyn problems come from taking tamox. Ditto insomnia, painfully dry skin & eyes, muscle cramps and pain in legs, flare - up of SI joint problem that normally heals in 3 months, been 10 now and no resolution, etc.
Edited to add - got interupted by DH
Spent the summer making 100 decisions a day about my dad`s care. Lived with parents to do palliative care as he wanted to be at home. O2 setting, pain and other meds, crisis management, support workers, drs.(BC made me onc spec) - sister who was working with me would only sleep when I was awake, didn`t trust some of others to make good decisions (her nursing background). 24/7 we loved him into the next life. But it did come with some burnout as I don't think I was physically or mentally ready as it was only 8 months after my BC diagnosis. Also involved living with other people all the time. While I love my family - happy to be in my quiet house - maybe why I am enjoying so much. Here's to the Couch!
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bgirl - I am worn out reading your post, can't decide whether to cry, hug or post...so *hugs and hugs*
I left my mind in the chemo chair, can't remember which chair... so there it stays. It's not over until WE say it is over...and if we do say it, someone please remind us cos we'll forget. No point in comparing, it is tough for all of us , some have added burdens we can share together.
24/7 caregiving is an enormous gift to provide on top on this crap. Your strength is amazing , I wonder if I would be so strong. Stay kind to yourself, you deserve a big cushy couch with room service. For as long as you want.
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markat - I have to have my port for Herceptin anyway so mine isn't going anywhere anytime soon...I think is just a matter of opinion on how each dr does things. I am still up in the air about rads - I called again today to see if my BS has referred me and they still haven't - ugh. I want to get in there and get that second opinion. I think our neoadjuvant chemo just complicates everything because not many studies address that issue. My girls are getting their flu shots at school; I got mine when I got H yesterday - happened to overhear them giving another lady her shot and I was like "hey, can I get one of those?"
whaevah - the spell check on this board is too hard to use anyway - so I just say forget it most times!
journey - who is this Vinnie guy I see people talking about - does he work in NOLA? I haven't gotten to the nipples discussion with my PS but I feel sure I will go with tattoos.
camille - love that pic - my SIL was just telling me about a lady she works with that talks about her cats like they were kids...and I think the view of doing what the drs think is best is all you can do sometimes...I know we are supposed to be our own advocates but when it comes down to it, they ARE drs after all, lol.
bgirl - cannot imagine having to make all those decisiosn about your dad, that must have been been really hard. And you are so right about your DH's friend's wife. It really makes you think about how tomorrow isn't guaranteed for anyone.
Back to the PS tomorrow - I think he is taking these stitches out of my Frankenboobs...
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