The Hermit Club

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  • jazzygirl
    jazzygirl Member Posts: 11,976


    Hi hermits- my last day before my client brings their new system up for three hospitals. Let the fun begin!


    GrammaB- another blood sugar lowering item I was told about is mulberries. You can find packaged dried ones at Whole Foods. A woman I work with who is also a borderline diabetic like me told me about them. You just need a few for a snack, carbs and all.


    I have also heard recommendations about increasing fat in your diet, which is something we have been moved away from for years. Do you have any issues with cholesterol? I know the AI's have a tendency to increase them. My bloodwork in August did not indicate any problems, yet. I am taking BP meds, the lower dose of metformin, and the AI drugs and really don't want to end up on cholesterol meds. I never wanted to be the girl who took one drugs and then ended up on five to counteract the SEs of others.


    Cami- it sounds like the D is a permanent SE from your chemo. My sister had bad D during her chemo but fortunately, it had stopped. If they have checked everything out otherwise, it must be what is happening. A terrible SE to live with. Being worried about having an accident is no way to live.


    Do you like doing the phone work? Does it feel good to have that work routine in your day?


    Spookie- I am with Sally on the school bus driver responsibility as being a very important one. The job of transporting the little ones safely to and from their homes to school and back each day. We used to know our bus drivers by name and they became our buds as kids. I think fast food has not helped this country at all.


    Sally- I hope you are feeling better as time goes on. I think starting your own Winter Rads thread is a great idea. I find the specific threads around specific parts of treatment really helpful. I am on the Arimidex thread (several others here are too) and find it is very helpful.


    Teka- do you send cards out too?


    I am almost a week into resuming the anastrozole, and so far so good. I have not had the increased stiffness or worsening foot pain (yet). The joint stiffness came on relatively quickly last time, foot pain within several months. By the time I go see the MO again on 12/26, I hope to get a sense if this med vacation really helped. I need to talk to him about when to do my next blood work to check cholesterol and to do my annual bone density test (seems like around March will be the time frame).


    It is cold here this morning. Twelve degrees. Normally does not get that cold here. Hello winter.

  • CCFW
    CCFW Member Posts: 570

    deleted

  • camillegal
    camillegal Member Posts: 15,711

    Jazzy I really hope u have good Luck with this med. now

    And no I don't like this phone call job thingy. I don't mind the computer work, but I'm doing this at 7AM BEFORE COFFEE and 7, 8 at nite. And the days I'm not feeling well I'm taking all my stuff in the bathroom, and when I go out I take everything with me to take the message and when these guys don't do call backs I have to apologize and make up reasons. And at first when my DD was home I'd get a little break and have her answer phone while I rested if I was having a bad day and now she's working PT nd I notice 'm getting crabby beside feeling not so good. I know it sounds petty cuz I don't have to leave my home in this weather, but I want to tell him how to run this business or he's going to loose it. I did work for construction yrs ago so I know how to keep people happy even when they're not, but I just might say something. I want him to make a success out of this but when people call and are complaining he has to get right on it--This is the computer age with his name all over and a couple of bad raps and no more calls, See how I preach, no one wants to listen to an old lady so I get so frustrated--they are not in business long enough to take any bad comments. OK I've vented.

    Oh Jazzy u system starts really soon, I hope it'll be good for u.

  • spookiesmom
    spookiesmom Member Posts: 8,178


    Cool train pic! That's the way to see and enjoy snow. Will be about 75 here today.

  • camillegal
    camillegal Member Posts: 15,711

    SpookieShocked that my raspberry sound to u---it's cold here.

  • spookiesmom
    spookiesmom Member Posts: 8,178


    ROFLMAO!!!!!!!

  • Survivortude
    Survivortude Member Posts: 6

    Winking I am definitely a hermit...although I am worse now that I lost my job 4 months ago. 

    I can totally relate to turning off the phone, not checking emails and wanting the means-well crowd to go away.   However, my surgery, chemo & radiation Iis over.  I am a 7-year survivor facing possible ovarian cancer who cannot progress with surgery because I am uninsured & there are no gyn-oncs or hospitals in my area on Obamacare, and my MD who I know & trust isn't on the plan.  While I understand everyone wants to help me, I just want to stay in bed and make them go away.  I am perfectly happy dealing with no one but my SO/BF (even though he can get on my nerves easily with my moodiness) & my cat (my furry son).   I feel like saying "if you can't help me get a job or surgery with MY doctor, please wait til I contact you..."

    My heart goes out to those in active treatment, as there are so many wanting updates, info, or to say something they feel is helpful.  I was lucky enough to have a friend who understood & would deliver food on the doorstep, calling to leave a message it was there.  (She is also the one who called "bullsh*t" on chemo brain, telling me "stop it.  You do not have that" when in fact it's very real cognitive impairment, but I forgive her ignorance...and she's a damn good cook).

    Wishing the best to all the hermits out there.



  • camillegal
    camillegal Member Posts: 15,711

    Welcome Survivortude---u've been thru a lot nd chit on this no insurance thing. That is so wrong for u and anyone else caught up in this thing. I don't blame u about being alone--I am perfectly happy if no one talks to me--tho I do come on the boards cuz everyone gets it here. I live with my Dgtr but I'm pretty much left alone--what I want_ except for my Grandson who could never bother me---But I did live alone going thru all my big stuff I was fine with that. I know there is nothing we can do for u at this time but we do understand. Wait can u go to Public welfare, does u'r Dr. take that? or is this all that's offered to him? Wht about cancer societies don't they offer help with trials and recurrence somewhere else? Did u try all that? Someone mite come on with some knowledge of some alternatives so I hope u come back.

  • Survivortude
    Survivortude Member Posts: 6

    Thx Camillegal.

    My surgeon of choice as wel as my 2nd opinion dr are both pioneers in the field, highly recommended, knowledgable & skilled.  They don't have to accept "medicaid plus" plans like the Obamacare plans.  My MD is in surgery 3 days a week, and with the excellent insurance I had through 8/30/2013, I was all set.  My appt to schedule surgery was 9/18 but had to cancel as I couldn't afford $744 Cobra insurance which went up to over $800 monthly in Oct.  Since I dont want to risk horrible lifelong problems on top of my current longterm chemo issues, I need an experienced surgeon.  Without good insurance, that's impossible.  But for that I need a job, and how can I get one if I was fired & have no references? Fired for not being able to work all day, every day, without fail (needing surgery), not performance issues.  But if new employer knows I need surgery, they won't hire me, plus who hires anyone (for an HR or Management position) that cannot provide good references from their past job?  They won't do that for me, and my previous job, I gave notice & the boss fired me on the spot.  Somthe past 2 jobs = 13 years & neithrr bosses will give me recommendations.  

     See why I want tomstay under the covers most days?  Did not mean to stray off tooic, apologies to the thread.

    My computer & my fellow survivor sisters have never turned against me.  I'm safe here....like you all mention....you get it!


  • Tomboy
    Tomboy Member Posts: 2,700


    Crap, survivortude! thats alot to deal with! do you mean that the treatment you mentioned is for the ovarian ca, or was that the original treatment for bc? glad you found hermits. i want a good cook who delivers! My SO/BF is the same way. love him to bits, but he does better when i act better. i think it is because he gets scared, when i get scared, or am hurting or otherwise not okay. So i try to act better so he doesnt stress over me. i do kind of believe that stress may cause cancer, in my not so humle opinion.... i was very stressed, especially the last 8 years or so before dx, and have always been kinda nervous. appropriate response to the state of the world! keep coming back!

  • blondiex46
    blondiex46 Member Posts: 2,726

    Welcome Survivor, we are here and will be, so sorry that you are goiing through all of this especially around the holidays....

    Cami didn't know you had a job....

    Jazzy....OMG didn't know it got that cold in NM...

    Teka good for you not doing cards this year....

    all others thanks for caring...

    am feeling better, just taking time....went to MO yesterday, was considering stopping chemo if the lungs would get better without it, well they nixed that the lungs are not because of chemo cause of cancer.....waiting for a few more results from the pathology report, so have to go back to MO next thursday and he is switching chemo to havalen, I think...we will see....so glad to continue to feel better.....

  • camillegal
    camillegal Member Posts: 15,711

    Surviver (sp) Ok Well getting a job is out of the question not because of references even but u need to work for xx amount of time to get insurance--But Basically u got fired for being sick.  I know (I'm sure u do too) this is against the law, nd bad references are against the law--unless u did something illegal. OK everyone with knowledge start thinking--there hs to be a way. Effin cancer.

    Yes Blondie I have a job from home--and it's not going well, leave it to me to actually get a simple job I can do and it's a mess. Oh well things can be worse. But Blondie it is nice to see u posting and doing a little bit better I hope.

  • jazzygirl
    jazzygirl Member Posts: 11,976


    Survivor- welcome to this group! All you have gone through and may have yet to go through is a difficult journey, and I too would want to stay in bed and hide under the covers. The world is often not a friendly place with this disease. I know employers will discriminate against and also let people go because of cancer. I have seen it several times in places I have worked. It is people at their worst.


    What you need is someone in your area to help advocate for you. I would contact your local American Cancer Society to see what things are available for someone like yourself who needs cancer treatment and does not have insurance. Or if you can get insurance but need to get certain doctors available to do your surgery. They may know of organizations that can help in situations like this.


    Do you have a friend or family member that can help you get something set up with the ACS or another cancer org in your area?


    Getting your surgery done so you can find out if your mass is cancer or not, and anything else you may have to do is the most important next step. I also advise you not tell future employers about your cancer. It is no one's business and you are not beholden to tell them, unless something happens in the future and you have to go on FMLA. You do that at the time, and if and when you have to. I wish people were nicer, but in business, they aren't. Especially around this subject.


    Also, on the subject of bc and ovarian cancer, I had something happen last year at the time of diagnosis that made them think I had ovarian cancer too. Turn out to be my appendix. The oncologist I saw at the time said mets from bc to the ovaries are not a common thing, but those who get both as primary cancers usually have the BRACA gene. You may want to find out about getting tested for that too.


    I will let you know if I can think if anything else.

  • SallyS70
    SallyS70 Member Posts: 816


    Jazzy, hope new system day goes smoothly.


    Blondie, I am happy to hear that you are feeling better. The time it is taking me to feel better caught me off guard ... I expected faster results.


    Survivor, if you call a local hospital, they may refer you to a free nurse navigator service. She/he may know about resources for you. I am so sorry that you have so many complicating issues. How about calling your local Susan Koman office, and, as Jazzy suggested, The American Cancer Society?


    Happy Saturday to all of you.

  • Furfriend2
    Furfriend2 Member Posts: 168


    Hi Survivor,


    sounds like you are going throught alot. Cancer bites!!! Cobra is soo high. I was on that short term a while back and dropped because my ex and I could not affored it. Heath care---OMG don't get me started. I hope you are able to find some option for your ovarian c. I liked Jazzy's suggestion for an advocate, ;think I need one of those. I worry about my Mom and Medicare and the cost of everything going up.


    There is a Christmas parade racing up and down my street and here I site feeling sorry for myself **Sob**.


    People are parked all behind my apt.bldg. blocking us tenants in . I couldn't get out even if I wanted to!! Sorry, people are sooooo self centered. There is a perfectly good parking lot next to my apt. bldg. but people feel they can park any where. THIS gets my goat- sorry for ranting!

  • jazzygirl
    jazzygirl Member Posts: 11,976


    Hi hermits- go live going. Went to one of the hospitals for awhile. Lots of clinical issues to help with, despite the fact I work for the revenue ($$$) of the system implementation. But we help everyone and find the people they need to connect with to help in the clinical areas. I work with good folks and everyone just jumps in to help with these go lives. I like the team work that happens with these days.


    Ran some errands on my way home and relaxing for a bit but now more calls to deal with. Cold and cloudy here today. Feels like more snow coming.


    I bought some peach colored Xmas cacti and a pretty pink and white pointsetta yesterday. Xmas flowers make me happy.

  • jazzygirl
    jazzygirl Member Posts: 11,976


    image

  • Tomboy
    Tomboy Member Posts: 2,700


    HAHAHA, jazzygirl i only wish it snowed around here, so i could make one of those, just for fun. did some painting today, only one room left! but i have to wait for the guy to get bak home from out of town, to pack it up so i can. so instead, i am eating ricecakes with this stuff i found at the store, called candybutter. its so bad! it is like peanut butter with candy flavor. special treat for a rainy day, which it is. gonna take a shower, put on fun make up and clothes, and then maybe make a pot of soup! i dyed my hair lavender! i will post a pic, soon. and then there is this series called 'orphan black" from bbc and netfix to watch tonite. so a pretty good day, and not working tomorrow. grocery shop, tho, and who knows what else, laker basketball for my man, so guess i will make him a good snack for that, otherwise left up to my own devices, for a couple hours. hope everyone is feeling alright,kay?

  • camillegal
    camillegal Member Posts: 15,711

    Kath U'd better show a picture of u new hair color, I love it already.

    Jazzy good pic--But u sound so busy, but happy--So that;s good.

  • jazzygirl
    jazzygirl Member Posts: 11,976


    Teka- glad to hear you got out. Was dinner good?


    Cami- busy for sure. Happy, just trying to keep steady. My sinuses were bad yesterday, but I seem to be on the every other day cycle with this cold. It is waning but some days I am just stuffed up! The cold weather makes it more so.


    Heading back to the hospital for a bit this morning for the go live. Tomorrow my bigger days begin. Fingers crossed.

  • camillegal
    camillegal Member Posts: 15,711

    Jazy good Luck--u know u always sound happy and really up, maybe that's why. U have an excitement in u'r writing, which I feel by now like we're talking.

  • SallyS70
    SallyS70 Member Posts: 816


    Happy Sunday All,


    Jazzy, your start up sounds successful which must make your life feel smoother ... and you made it happen while you weren't feeling top notch. Hope your sinuses clear completely quickly.


    May join a DS and DGD for coffee at Starbucks today. I love meetings at Starbucks.


    Paperwork has piled up since my surgery three and a half weeks ago. Maybe saying that to all of you will get me inspired to catch up. I am retired, so it's too easy to say, "Tomorrow."

  • camillegal
    camillegal Member Posts: 15,711

    Sally I enjoy Starbuck, I like it that they have it in the hospitals these days, OMG see where my social life has gone to. But I was thinking everyone makes it so easy for me to be a hermit--I don't have to leave my house to get my hair done or dyed (I think I'm going to foil it soon) wel my DD will, and I work from home (my little job) the kids do my shopping--well now it's reallycold out so it works out well for me. But I do go out with my Friends and stuff, I don't miss that if I can Go. So I hope u have a grat time Sally and u live where it's not cold weather like we have so it's easy to get up and go,

  • SallyS70
    SallyS70 Member Posts: 816


    Cami, it is just after 8 am here in Reno and minus 6 degrees. Although the Sierras often shadow us out of snow, today I have 5 or more inches in my yard. I do find the winters milder than the Chicago winters mostly because we have more days of bright sun.

  • blondiex46
    blondiex46 Member Posts: 2,726

    It is snowing here, yay....29deg....wanted to go out but now that is out of the questions, not feeling the cold, am watching it from my bedroom windown, getting ready for some football...

    Cami sorry about the job!!

    Survivor....I am so sorry that you are having a hard time, thoughts and prayers.

    Jazzy hope you are ok...

    Me doing good, getting stronger think I will take off of chemo until January...

  • camillegal
    camillegal Member Posts: 15,711

    Blondie ist'sso good to hear u'r getting better,

  • Lily55
    Lily55 Member Posts: 1,748


    Way to go Blondie


    I am really struggling to find a meaning to life right now.....by comparison I breezed through my surgery in the summer but this one I feel upset traumatised, and as though it will be a relief for life to come to an end.......I have no joie de vivre


    I have had some major upsets recently with people I thought were friends right on my doorstep, and while others think I have been really badly treated it does not stop the hurt or me wondering if ever doing anything is worthwhile....the power of projection, dump on to me what you don´t own about yourself.....etc etc.....and it is all in my local town. I am not imagining it as real friends get the same treatment and comment on it (huddles who conspicuously stop talking as you go past etc).


    I hate Christmas as my son married a woman who made sure he would never have a relationship with his own family whilst cleverly maintaining she wanted it so much.....even my rather thick skiinned OH commented on how she would never even talk to me, never even made me a cup of tea, EVER!!! So I gave up and withdrew as the only healthy thing to do so all this stuff about family and the real meaning of Christmas is really cheesy and not cheering.....


    Maybe I am not a nice person, I don´t remember everyones names on this thread, i forget things and so on.......and I whinge at times like now.....

  • Tomboy
    Tomboy Member Posts: 2,700


    Lily55. if i was standing next to you, i would so give you a hug! i am sorry, for people who just dont know how to act, around us and our diagnosis. just remember, it is more about them, than you. i hope you have at least one person whom you love, and loves you back, and that you can confide in. until then, you can be your own best friend, and treat yourself, as you would treat your most treasured friend. i would so hold your hand, swinging arms, walking down the street, heads together, laughing wildly! i would. please just always know we care for you here. Dang. i wish we all lived on breast cancer island together, sort of like lepers! so we could really support each other in loving and concrete ways. do you suppose we could all get together, and buy a small tropical island, and have it be open for women like us, to come and stay and heal in all ways, for as long as needed? i wish

  • camillegal
    camillegal Member Posts: 15,711

    Kath u'r words are so wise to Lily and Lily I hope u read all of this//U'r place is dark right now and I'm sure it has so much to do with u'r son. Oh what a horrible scenario for u, to have a DIL that's like that--I'm so sorry for that--but at this point u'r probably doing the right thing nd I cn't imagine anyone putting up with that forever. Lily u'r whole life is worth so much every minute of it or u would not have it. U are a good person no matter what the so called friends feel or say and yes this is not just a hppy time for many it is a very sad time for a lot of people, u feel like a cloud is right over u'r head and thoughts go wild--I know tht--but u have to get control whether it's thru meds or on u'r own, it is under u'r control now--I know we cn't control a lot of things and no one asked to be in BCO, but we are here and we'd like to think we support each other and we're her to support u. Kth is so right u r u'r best friend and I'm sure if we were all together we could hug u tightly so u can  feel how we feel. Please listen we are all unique in our own world and u are too. Don't ever forget that, and it's u'r DIL's influence and that can be brutal, but it can't last forever. Hold on to this wild Merry-go-round we loose our place sometimes but we end up OK.

  • Lily55
    Lily55 Member Posts: 1,748


    THank you - i vote for our own island so long as dogs and cats can be there too........


    I feel so disappointed in my son as I raised him alone and he treated me like dirt for the last 13 years we were in touch, just deeply selfish and angry at me (as his Dad was not around I got the lot) and lacking the balls to tell his wife to treat me with some basic courtesy and decency yet .....I did my best for him and changed my job and everything to give him as much of a normal life as I could.....


    But I also feel really abnormal again....physically......i still have no mirror in my bathroom..........


    I will think of skipping along holding hands and tk u............