The Hermit Club
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Hi everybody! I have "survived" the new j-o-b so far. Don't think I am going to like it very well, so I am keeping my eye out for something else. The job market is so bad here...I may be stuck there for a while ...yikes!!! Just trying to convince myself it's better than no j-o-b. Constant reminders to self.
Camille you have such a great and fun personality,
I am sure you are a pleasure for the Docs. I was wondering to myself when you wrote D Dr…I thought hmmm does she mean “Dear”Dr…or “Damn”Dr??? LOL. I think that since he has not had a case like yours and is so interested (and excited) is truly in your favor. Meaning he will persist until there is an answer and you get RELIEF!!! Get you off that D-train!!!Lauren you just have to do what is comfortable for you. If everyone knows about your dx, you can do the scarf, hat thing. I am a very private person and was very private about my dx. I did not tell/share my dx with many. I had a wig that I liked and felt good (more normal) in and I wore it every time I left the house for 9 months. My neighbors didn’t even know what I was going through. I live in FL and had chemo Mar-June, and yes it is hot here…but I wore that wig with no complaints! I wore it enough that I was used to it and it rarely bothered me. It was a “blend”. Just know if you are wearing a wig that is any part synthetic…do not open the oven door (or grill) with it on…it WILL singe it!
I had an energy boost from the steroids (the first day or two), but never lost any sleep and was HAPPY. The PROBLEM I had from them was the crash the next week…ROIDRAGE. I would get very antsy and agitated and angry (cried rivers
)…if I was in that mood, everybody needed to RUN and HIDE, I was SO mean. 
I hated myself. My dang MO acted like that was ‘normal’! REALLY???? I almost stopped tx it was so bad. Thank goodness it only lasted a couple of days (but happened every tx). 
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You can laugh at me. Teka was talking about wine and cheese. Markat said her favorites are Downtown Abbey and fat free feta...so I was thinking hmm... Downtown Abbey must be a wine. Then I realize from Lauren's post it is a TV show...lol. Is it a sit-com, soap or ??? What channel? 0 -
FL first of all, I'm sorry u'r not so happy with u'r job maybe it will get better, just keep on looking anyway something might pop up that's right for u.
And FL 2nd of all hahahahaha We fly from one subject to nother Downton is on PBS here, it's from England and Lauren maybe on cable u can go in and see TV show and see how far they o back and sometime u can buy the tapes for them now.
Maybe we all started t want to be alone when our ROID started cuz everyone left us alone--we just didn't notice-hahaha--Seriously I just remember having loads of enery then drop on the couch and in the bathroom LOL for a couple of day, then start all over again--but I had mine weekly so the strength was not as extreme. I can't remember what infection it is--but one possibly more they give u steroid pills everyday u take one for 7 days. Great stuff.
It's really cold out today--so hermitude is the plan---I don't even have to talk to anyone if I so choose---and that I will. Not u guys but the outside world.
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I bought my wig today. I like it better than my normal hair. It's a hand tied Racquel (whatever that means). Anyway it was fun picking it out. My husband is an "English" hairdresser, and he was helping so much. He even sold a wig to a woman and was helping with consults - haha - he now wants to get into the wig business. I plan on wearing it when I go out too, even though I'm in Florida too!!! I'm not a private person; just vain
. I'm so scared of roid rage. I went through that with my son - it's awful!!! Maybe my "happy pills" will counteract it. I take a wellbutrin and celexa cocktail. 0 -
Lauren, netflix has the first season and Amazon has it on instant videos. So if you have a Kindle Fire or can watch or stream videos you can watch the older seasons. Glad you like your wig!
Lol Fl about the wine and cheese!0 -
See lauren u'r getting it all together and u'r DH is a great help.
Markat go to sleep.
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Camille after you posted that I went straight to bed. I'm exhausted! The job went so good but my feet are throbbing! Super easy and it was nice to get out. We'll have to see how I feel by Thursday:)
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Teka--Now that I know what D and U means LOL--it's next week,
Markat Down 1 day and u liked it YaY--so the people must be nice too. Good. Cuz u know how it is when u start a new job--I hope this makes u feel better too--all the time.
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Hi fellow hermits:
I am doing my internal radiation this week and all is well. I flew out to the location where I am having this done on New Years Day, had the catheters inserted last thursday, recovered from that, and then had some fun this weekend with my friend who was here to help. Today I started my internal rad therapy that goes through Friday. Back to being a hermit in my hotel room now that my friend has left, and I enjoy quiet time and rest when I am not at the center and also have space to work here too.
I know many are struggling along the path here and hoping and praying you are having a good week or otherwise getting through this first full week of January!0 -
All right Jazzy start 'splainin' how is the done--I've never heard of this so do uu'r 'splaining'
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Okay, here is how it is done.
Procedure for the catheters: They start with a CT scan and then work to lift your breast up off the muscle into this sort of "vice" like thing with holes all around it. The holes have coordinates and they use long needles to go through the breast through the coordinates on each side and then put the plastic tubing in. Does not hurt, you are numb, but of course, feels sort of weird. More CT scans. When they are done, there are 25 (in my case) plastic tubes facing out of both ends of your breast that they cap off. It is enough to make you pass out if you saw it. The tubes are what receives the radiation seeds.
Treatment: They put these wires in the catheters from the lower end and feed the seeds in to each catheter one tube at a time. The physician that does the actual model for treatment says the seeds stay in longer for the tumor bed, less time on the outskirts. It feels like each catheter only has things in there a minute or less, only takes 15-20 min. Twenty five catheters receive the seeds in and then they are withdrawn through the same wire hooked in to each to withdraw them. Basically it treats the area from the inside. The only thing you feel is a bit of movement as things move in and out. They take out the wires, clean you up, and you leave.
This is a bit more experimental than the beam surgery which is why you probably had not heard of it, but it has been used commonly for years with prostate and other cancers. The candidates for this are very early cases where breast conservation is desired, and there is no node involvement.
Ask more questions!0 -
How long do u do this and u go thru this procedure every time?
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Camillegal- my treatment is 5 days, 2X each day for an hour each time. Procedure is a one time thing, hooking up the radiation into the tubes is for the five days. The whole process for me is a 10-11 day deal that includes being out of town for this (the hardest part).
I will have to do the other side (DCIS) next month and will go through the entire thing all over again for the right side. But I am not thinking about that too much yet, just getting through trip number 1 and this first one for the area with invasive.
Much shorter timeframe to treat things, but usually only done for stage 0 or 1 with no node involvement. Despite the catheters that are more uncomfortable sometimes than others, much easier to get your head around than the longer rads treatment so many go through.
Hope everyone out there is hanging in there today!
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Hope everyone is doing okay! Everyone still trying to shake off the holidays?
Jazzy I wish you the best on your procedure and treatments! They offer that at my center and a friend was really happy with her decision to do that.
Day 2 went great. I love working in a school. Not loving that they were doing a lice check on a little boy when I was checking in! Yuck! Skittle, between lice and bedbugs I might not last in the school system
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Boy Jazzy that really sounds safer for u'r body--harder to do but better results. I hope it all goes well.
Markat love u'r 2nd day lice--eeuuu--doesn't sound very inviting--but u sound happy so it's all good. I'm glad u'r happy there, I knew u would be
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I am alone in my house (except the cats). Yeah!! I know that makes me sound like a bad person, but the peace is blissful. Have things I should be doing, but think I will do NOTHING!
My husband is in PA at conference and my DD#1 got the call for a work placement for school starting today. So he is gone for 4 days and she will be working at least 4 days a week outside of house, but will be home for next 8 weeks. So some quiet time in my house again. Also, no one on my computer!
Markat glad you are mostly enjoying your new job. I know I should look for one too, but think I will take a few weeks to recover from Christmas. Maybe I will look after my post surgery apt. on 21st.
Cami- hope your Dr. gets you some answers.
Jazzy, hope you get through your treatment well and are home soon.
To everyone else, tried to follow along over Christmas. Wishing you all the best.
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Jane enjoy u'r quiet time for now--the last couple of weeks have been hectic so just relax. And don't look for a job til after u'r Dr.s app't. So u have some time. Use it to u'r advantage.I am so tired all the ime I don't know what's going on---It;s like my whole body and eyes are tired. LOL Even coffee isn't doing it lately--It's probably that infection that keeps on resurfacing--Oh well it'll get better.
Hope everone has a good day.
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Hi Jane! Yay for being home alone! I'd put off on the job thing if you can. I'm so freaking tired, but also have more energy from getting out.
It's really nice to be around people who don't know about my cancer, or if they do, they don't ask. I'm sure they wonder about my odd hair. It's pretty poofy and curly. I look like my grandmother that would go get her hair set every week lol.
Camille sorry you're feeling so bad. The flu is hitting everywhere bad. Hopefully everyone is staying as healthy as possible.
Waving hi to FL, Skittle, LL, and Whaevah! And everyone else. Whaevah I hope rads are going okay!!0 -
I knew u'd like it markat--tho u have to get used to it I'm sur---but just being around people that don't give u that look--u know what I mean and it's a hole new chapter for u. It's all good.
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Hi, hermits, all... I've dropped off the forum a little bit since all I wanted to do was complain and whine, and didn't feel I should go there. Somehow I don't feel like I've earned my stripes. (more se's than usual... lots of ouch and woe-is-me...) But I'm trying to get over myself and adjust to the next new normal. Have an appt in a week, so may learn something helpful to at least change my attitude.
Like Jazzy--wow. What a procedure. You are one brave lady. I pray that all goes well and your health bounds back.
and Camille--you impress me with all you go through, and bounce back smiling.
bgirl--enjoy your quiet. Sleeping for a day appeals to me right now.
Teka--
Markat--what do you do at school? Lice and bedbugs must be a rude awakening/greeting! I guess I'm too warworn to react to the itty bitty critters any longer. (Kind of shocking to just type that. Didn't realize I've become numb to the icky side of passengers brought to school.)
Health and healing to each.
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Ok Skittle u'r in for it---if that's why u'r not coming by more no, no, no it's different if u've been so busy u don't have time, but u're reasoning is all mixed up--why do u think we're here? Complain, rant, vent whatever u want--anyway sometimes maybe we can help we know what it's like and sometimes u need reassuring from the group that doesn't have a clue, but we just keep chuggin' along. Well I don't have a clue, why we feel this way. But there's lotsa of ickiness with this, it's not pleasant and I like when I hear women are don with all they need to do and feel well, but that doesn't seem to be to realistic to me so spill u'r guts out and please don't let that be a reason not to come on here. I'm always complaining--I never feel good--Oh wait remember about a month ago I had a really good day, I was so happy. But other than that I feel like shit most of the time. And I tell everyone. so just tell us OK????
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Jazzy, hope all is going well with your internal rads. They do that procedure at the hospital I went to. I wasn't a candidate because I had mx. My previous boss' mom had it and it worked very well for her. I wish you the same!
Camille, has your heart dr given you a muga or echo? Do you know if your EF (ejection fraction) has changed? Just wonder if that has anything to do with you being so tired. What about the meds your are on...do se from them cause you to be tired? I'm sending you some 'energy' vibes!
Skittle, I would have never thought of you as a complainer/whiner. You are very kind and thoughtful. We have all been though a lot! We deserve to be able to whine and vent if needed. This is a safe place to let off steam/vent because we all 'get it'. Some times it is good to take a break from the boards and get away from the whole bc thing and thoughts and that is ok too.
bgirl, ENJOY your peace! Doing nothing can be a really good thing!
markat, glad school is going well! It is such a good thing to enjoy your job! It is also nice to go where no one knows about your bc. The people at my new job don't/won't know about my bc either. I like it better that way. As for the bugs, hopefully they will hitch a ride to some where else.
My new job has been better this week. Hope it continues to improve. It is very involved and so much to learn, but I am relieved that I am able to focus, concentrate and pick it up. I think that the chemobrain has faded! YEAH!!!
I am looking forward to having lunch again with the local BCO ladies on Saturday.
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FL I'm glad u'r happier with u'r job--sounds good then Actually u found one pretty quickly and I'm glad u'r cathing on so well.
I've had echos, scans and nuclear, but in the last few yrs I've had so much diarrhea my electrolytes are always low, sometimes so low they call them critical and I'm in the hospital for a week at a time, so they think my heart might have some damage cuz potassium and magnesuim are always low and somehow that connects to ur heart. So that's why I'm so tired-no sooner t=do I pull them up they drop right back down again. Now next week I have the down the throat and up the ass tests at one time for the Dr. to take (he said) alot of biopsies This is the 3rd Dr. for diarrhea I've seen they can't find out why and I do tell them after a day or 2 I'm exhausted and I always get dehydrated even tho I drink loads of vitamin water too. And take all kinds of vitamins--so in the long run that's why I'm tired alot and today I had loads of stomach pain which is relatively new, but it's easing up now and then I get tired from the D and now the pain. So I call it lazy and I really don't mention much to my DD cuz she always wants me in the ER---and almost everytime I go to ER I get stuck in the hospital so I don't say to much Oh and I get a lot of infections so I'm on antibiotics alot, my immune system I think is shot. Now U glad u asked--U got pretty much of the whole story of my misery LOL Oh and I'm starting to throw up sometimes--Now I'm laughing cuz this could really continue--but enough is enough--I think if I weren't tired they'd think something else was wrong anyway. hahaha
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Thanks Teka---but there is no Nobel Prize involved with this mystery diagnosis.
Good Morning ll--I hope u have good days ahead and whoever is working good for u.
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OH get this today I have a 15 min app't ON THE PHONE for like a pre-op---they have all my infor from last week in the computer, but we go over everything. I hate (as u all know) being druged for being asleep--my last colonoscopy my breast surgeon did it and let me stay awake--he did it cuz he knew me and knew I could deal with it. Oh how I miss him, he did whatever I wanted--he loved me in his Dr. way.He would hug me all the time and hold my hand alot.But he did say I was the craziest patient he ever had. Good or bad I don't know. I'm sure I told u uys before my last operstion they couldn't get me out of it and when I finally woke up my whole family was there--and I wasked for my own anethisalogist, someone who's rep. was extremely good. I've always thought that whoever puts u out is the most important D. in tht room.What I understand is this is twilight so u'r not being deeply put out--so I hope that helps.. I've had these tests before but awake and this new Dr. was not believing me with no one has these awake--but my BS did them all the way I wanted. I was supposed to be put out for one of my biopsies cuz he said it was very uncomfortable and I pleaded with him not to so he didn't and I promised I wouldn't move and I didn't except for laughing with him and he was moving telling me to be quiet cuz he was laughing---see I'm rambling again--This was neer done ecause I was brave, it was done cuz I hate to o out. So no one thing I'm brave cuz I'm not.
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Teka I believe that--when I had my last colon....I let out so much gas while he was working in there I was lauging and I told him I always wanted to do that to someone LOL
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U crack me up. LOL
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OMG hahahahahaha
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I imagine a wife doesn't appreciate those things, but I do. LOL
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Seems Hermits everywhere have zapped into the new year with busy schedules and major changes. Full speed ahead.
Camille... I do hope you are able to feel better soon. The drs should be massively proud of you for being such a trooper. I'm more of a knockmeoutcold kinda patient. I don't want to hear, see, know procedures. Just do it and send me home so I can pretend all's well. (Obviously doesn't always work, but I often wander off into the Land of Denial. I feel safer there.) As for venting... with me, it's like chocolate or jalepeno Pringles. If the container is closed, I'm fine. Once I get started, it's all over. My main whine... I'll try not to jump off the deep end... is pain. and a thumb that won't work without popping out of socket each time it bends (yep, an se from meds). When typing, grading papers, brushing my teeth, trying to grip anything becomes a challenge, I get frustrated. The half a breast and scarring are a piece of cake compared to the daily challenges with hurting and skin rashes and joint struggles. (Ok. I think I'm done. Thanks for listening. )
Fl, Teka... thanks for kind words and understanding. I just want to scream sometimes, and that's not like me... Normal is gone, and I guess I haven't properly mourned for it yet. (when Deep Denial becomes your mental mailing address, Harsh Reality can be a pretty icy plunge.) sigh
But I love being here and being able to be with those who get it. Like most, I haven't shared this bc mess with many... and those who know have for the most part been kind and prayerful, but not understanding. How could they? I can't expect it from someone who hasn't had their own personal earthquake. But all of you have been so kind and patient and funny and unique. Thank you.
Markat, FL... Best of luck with jobs! It can be a wonderful way to focus outward. :-)
Happy Thursday. Any Big Bang fans?
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