The Hermit Club

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2013

    Lori- sorry to hear about you not being able to talk to your husband. I have a sister who also has breast cancer and sometimes I cannot even talk to her about things, she gets angry and shuts me down. We just had an unpleasant conversation this week that has us needing space from each other. You would think some folks that could or should be able to listen to us would do so, but not always the case. I personally think it is fear that causes people to shut us down. However, that being said, not helpful to us trying to get through this.

    Your health plan and/or local cancer organizations may have some good references for you for counselors who are specialized in helping cancer patients.

    I am thinking of you tonight and know you have friends here.

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  • Skittle
    Skittle Member Posts: 400
    edited July 2013

    slickchickie--Just saw your pic with big friend!!  How old is he?  she?  (Need some GSD advice, if you don't mind...)

    Lori--Good luck with dh.  The male mind is a mystery... emotions just don't seem to process the same way.  Perhaps, though, he'll be able to break through, with a nursing background.  Or he may just care for you too much to let himself be vulnerable.  Best of luck.   Cuddle your kitty for us all.  There's something healing in kitten fur hugs.

    Blondie--hugs.  Hope all goes well.

    Jazzy--how's the arimidex treating you?  Is MO planning five years?  Seems like some are saying ten might be the suggested round soon.  (hoping it'll stay five!)

    Camille--how's your back treating you? 

    Laurie--any feedback from your letter?  Hope that dr understands how hurtful he was.

    Teka--Cool 

    happy weekend, hermiting or not.  Be safe. 

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  • dwill
    dwill Member Posts: 312
    edited July 2013

    Jazzygirl--I guess here I don't have to explain myself. I am such a hermit.  I come out and play then I retreat and rejuvenize.  This year, I decided to do the 4th of July solo.Living alone, I am tired of hosting for my entire family--it is such a responsibility.  I surprised a lot of people because I usually host a Hug-g-e BBQ.  LOL!!! You would believe how many folks could not get it in their head that there would be nothing for them at my house this year, and they would have to seek out someone else house to celebrate. Now if you think I am depressed, I'm not.  I slept in on the 4th, ate a late brunch, took a mid day nap, got up and went to the movies solo, came home and watch the Macy 4th of July Firework Spectacular on TV.  Don't know if I will do this every year but I thoroughly enjoyed myself.  Getting BC certainly changed my perception of many things.

    CCFW--TE stands for temporary expander or tissue expander. There is a full key of abbreviations in the Forum for new members that  helped me a lot with the abbreviations, if you'd like to see what some of the others mean.  My TE was put in at the same time I got my MX.  They are place in between muscle and skin and its purpose is to push the muscle out and expand the skin--much like a pregnant person tummy expands--so that at some point they can put in the permanent breast implant. The process is extremely uncomfortable and sometimes almost unbearable--but I've been told the operation for the perms will be much easier and I will feel 100% better.

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  • camillegal
    camillegal Member Posts: 16,882
    edited July 2013

    Oh I always hear TE's are not pleasant but the end result is good.

    Skittle--I'm treating my back, my back is treating me like chit.

    Lori--it's surprising but so many husband seem to shut down some when their wife gets cancer. It's like they don;t want to think about it and it'll go away. It could be because u'r DH is a nurse he's more afraid than u are and figures he can't show it or act like it so it;s just to hard to talk about it with u or with the drs. It's like non=existant to him and he really can't help it. Besides as we know Men aren't from Mars no one know where they're from--they can be so weird. I don't even have a husband anymore and I'm doing all the talking about how goofy they are---thats' why I don't have one. But I do know about them anyway Lori there are groups that u can contact thru the cancer Society or u'r Onc. might even know--and we;re here too. So talk about whatever u want I'm sure we;ve been thru it or going thru it now.

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    dwill,

    Sometimes a somewhat normal life isn't so bad.   You had an enjoyable Fourth of July.Cool

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  • slickchickie17
    slickchickie17 Member Posts: 125
    edited July 2013

    I guess the first step is admitting you have a problem...sooo my name is Amy & I've become a hermit. I did nothing to celebrate the 4th this year, didn't even venture out to see any neighbors. I'm fairly certain it's getting worse, not better. Ugh...hermitage.



    Lori1020: I'm sorry that you are having to go into a new marriage with a cancer dx. I'm with you-- maybe it's time to go talk to someone. Keep checking in here, it helps to have contact with others like us!

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  • slickchickie17
    slickchickie17 Member Posts: 125
    edited July 2013

    Also, one of my sisters is a CRNA & she NEVER says the right thing. Actually she makes me cry often bc she lacks the compassion & empathy to know when to shut up. She means well, but she doesn't provide the kind of caring support that all of my cancer nurses have shown. I think some of the highly specialized nurses (a CRNA or bone marrow transplant nurse) are almost similar to surgeons...little bedside manner. I'm learning not to look to her to provide things I know she isn't capable of.

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  • camillegal
    camillegal Member Posts: 16,882
    edited July 2013

    Slickchickie I love u'r dog---how beautiful. And it's true especially at the beginning u just don't have the oomph u had, but it does come back--I enjoy being alone but I'm retired and did loads of stuff and I still go out and have good times, but only certain times do I really want to go now, and it's all about my dearest friends and family, but even for awhile it was just about me and I was fine. So I think it's kind of normal.

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  • slickchickie17
    slickchickie17 Member Posts: 125
    edited July 2013

    Camillegal: thank you for making me feel better! That's my dog Capone, he saved my life! Check out the thread Comfort dogs-- I posted the short version of the story on there. It will make you smile!!!

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    I talked an ear off many strangers while going through treatments.   Damn they were good listeners.  

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    Sweet dreams!!

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    camillegal,

    I had to edit all capital letters.   Didn't want to SHOUT.

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  • camillegal
    camillegal Member Posts: 16,882
    edited July 2013

    TekaWink

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    Tongue OutSealed

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  • camillegal
    camillegal Member Posts: 16,882
    edited July 2013

    Slickchiki zi just read u'r post on Capone and I absolutelly believe it.  My cat found mine it was under my big breats hahaha and she was always smelling or pushing there--I thought she was getting to be a perverted cat. well I didn't really pay to much attention til she did hurt me and I felt it myself- So our pets know us all to well and love us so much. But I'm so sorry u have to go thru so much u are so young it breals my heart.

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  • slickchickie17
    slickchickie17 Member Posts: 125
    edited July 2013

    Camillegal: a perverted cat? Oh my gosh that's just plain funny! Turns out you have a smart cat, huh? Ahhh, makes me miss my Maine Coon. I had to put my sweet girl down on 6/20, I miss her precious little kitty quirks. God, I loved that cat!

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    Teka is a 4 year old Maine Coon.   She's our sweetie!

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  • blondiex46
    blondiex46 Member Posts: 5,712
    edited July 2013

    Hope you all are having a wonderful weekend so far stay hydrated and cool, it is hot here today....

    Lori sorry your husband isn't there for you when you need to talk, maybe it is just too close for him...he loves you...

    Thanks Skittle.....

    sorry Cammie, take care of yourself....

    Slick I go out when I feel like it or today when I have to, and usually do a bunch of stufff while I am out, today can't cause of bronchitis....you take care of yourself that is what is important...

    HUGS, DW..Teka, Jazzy

    thanks you guys are so sweet for caring....the PET scan is @ 1130, I am starving but can't eat only drink so will take myself for take out at Panera's for lunch....want to go to Target and Macy's but don't know if that willl happen....I push myself way too much....

    BBL

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    The modern stores involve so much walking.   I now take and stick to a shopping list accept for X-mas.

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  • camillegal
    camillegal Member Posts: 16,882
    edited July 2013

    I just lost my whole post-WTF

    OK u said coon cats, Teka is that a picture of u'r cat--coon--I never heard of that kind--I have a Blue Russian??? I used to think a ct was just a cat, but now I know different. Slick that's what u had and I do know when we losse them it's devaststing--no one else understands that. My cat gives me a pet/cat scan and I tell the Drs. and sure enough something is going on where she "scanned" so I count on her. LOL

    I took my shower and smell like a ball of pink sugar for now and I washed a load of towels--al with the use of pain meds--I now know the real meaning of chronic--I'd rather know where marshmellows come from but sometimes u can't pick and choose.

    The westher is good today--And my 1DD might come by today, I really tell her not to cuz I only want someone when I need them and the kids will be home tomorrow---Joey called me last nite to tell me he missed me so he'll be ready to come home. I so love being alone, it's still hard to get used to living with my DD and family---but they are so so good to me-It's not them actually--it's me--But I do have a taste for Starbucks and no one to get it for me-so if my DD comes I'll tell her to bring me 2--one for today and one for tomorrow. hahaha I'm so selfish.

    OK I hope everyone is having a decent day today and I'll Be bock --that was with that accent in the movie--I can write all kinds of accents.

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  • Teka
    Teka Member Posts: 10,052
    edited October 2013

    Yes, but really not a lap cat, which a vet told me is common for a Maine Coon.   Although, she has overtime become more affectionate.

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2013

    Hi hermits! I have been having a hermity day, staying inside and working on financial and filing things that have needed my attention for some time. I am the better for it too!

    Skittle- I am doing okay on the arimidex but find as I go on, I feel more SEs. In the beginning, I was mostly just stiff and had a bit of bone pain but now my feet hurt all the time and I have a much more achey body. I also am having more problems with sleep and hot flashes too. I am on one of the Arimidex threads and many say up to 6 months is the typical adjustment period. I am coming into the end of my 4th month on it. I just have had to adjust some of my activities and exercise, but do finding moving my body helps. It makes me feel like an old lady!

    I talked to 2 med oncs, and one said 5 years but the other mentioned there is a leaning towards 10 years with the current med research. I am concerned about being on it that long and with the potential bone loss issues. I am already osteopenic, and my local MO says they have to balance the risk how much the drug helps reduce the risk vs. wrecks your bone health. My local MO says we are going to re-assess after I have been on this for a year. No easy answers to this.

    Dwill- I am glad you got to have a relaxing 4th. I have lived alone a long time and have spent many holidays alone, even before I had bc. Holidays can be a lot of pressure, not to mention exhausting. And your perceptions do change after all this- I have really come to realize how people always expect me to get on a plane and come visit, people will want to come to town and want to stay with me, plan social events, etc. I think I have been too much of a people pleaser in the past and have just stopped that nonsense now. So now I just say say "not doing that anymore." Our families, friends and communities will just have to get used to our "new normal", just as we are!

    Cami- sorry to hear about your back. I know it's been really hurting you. Wishing you pain free day tomorrow. Embarassed

    Lori- I forgot about your kitten! So glad you have that little baby to give you lots of love right now. 

    Teka- Maine Coon must be a big kitty!

    Wishing you a final good day of the long holiday weekend. Going to brunch to one of my favorite places here in town tomorrow.

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  • camillegal
    camillegal Member Posts: 16,882
    edited July 2013

    Jazzy I hope u'r day is wonderful tomorrow.

    OK I'll come clean, I took myself off of aromasin a few weeks back--So much damage has been done to my bones I thought I can't deal with this I can barely walk and I do excercises, it won't do anything but maybe help it not get worse--they already said I should use a walker and I don't and I blame it on all this shit, chemo and rads too I got so much chemo thrown at me after 2 yrs I think I got most everything and rads, LE and then all my bones, one of the things I have is scoliosis, I did not have that 6 months ago then viola it was there. so my spine is curved and disintergrating and sever arthritis there too--I never had arthritis in my back before a few months ago--so adding 1+1 I actually got 2---so I see my onc at the end of July sometime and then I'll tell her maybe she'll change it. but does it really make a difference --That one of the reasons I pretty much stay a hermit I don't have the energy to do things I really don't want to do--cuz when I want to I want to have the energy--does that make sense?  So I just live with this stupid pain and it's doable as we say--Please don't feel bad in anyway--cuz it xould be worse and I know that--I'm really lucky things are going well for me in other departments so this is fine. I'm just explaining why I took myself off--but I did it like every other day then stopped. That was my crazy way of thinking. I'm so silly about meds. hahaha

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  • lizlori
    lizlori Member Posts: 148
    edited July 2013

    So  I wrote this really long letter and somehow managed to lose it...grrrr instead of writing it all over I will summarize:

    I had chemo this morning and have been fighting tears...ended up sobbing and wrote to u guys

    family doesn't deal well with tears

    husband doesnt deal well with tears

    Conclusion: I can't take hermitage to an extreme level and not write on here. Because you guys "get it" I also will be setting up an appointment with a cousellar.

    Cami, Slickchicki and Teka....love your pets, I use to have a russian blue, very smart affectionate cats. Slick, love your dog, Teka, never heard of coone mane? gonna google it. Fritz talks to me...he will respond with different meows...kind of cool.  He is so soft ...I wished you guys could feel his soft fur, just like a rabbit.

    Jazzy- sucks that your sister is so angry. Sometimes anger is a manifestation of depression. All I know is it is draining. I am glad you are able to put some distance between you and her.

    Blondie- thanks for reminding me that my husband loves me....I need to hear that. You are so kind.

    Cami- you are so darn funny, you make me laugh....

    I went for bike ride with DH....down hill leaving and as you know up hill coming back...it was a killer, but I did it....Well ladies... Hugs and warm energy sent with this letter......

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2013

    Jazzy

    I was told at the beginning I'd be on Arimidex for 10 years. The dexa scan showed the beginning of osteopenia. MO told me to take 1200 mg calcium daily, 600 mg vit D3.



    I did start the pill, then got hot flashes and insomnia. Have arthritis in most joints hasn't gotten worse. Called them, they rx'd low dose Effexor. Took care of my SE.

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  • Skittle
    Skittle Member Posts: 400
    edited July 2013

    Ah, pets.  Sounds like hermits love their fur families...

    My bf lives in Maine.  She introduced me to many Maine Coons--huge, beautiful, soft, great soft feet, lots of personality. 

    At present, we have Oz, a shelter kitty who is four.  Skittle, a teeny kitty since she never grew up (literally).  Was on the brink of dehydration and was bottle fed for weeks of touch and go 'round the clock.  She's 3... Harvey, was a feral cat, who's now 9...  Roscoe and Macy, brother and sister black labs, who are 8... and our newbie Cooper.  German Shepherd, neglected by owners wanting to re-home him.  Have only had him 3 1/2 months, but he'll turn 7 in a week...   (and, sadly, many many have gone before...)  Loved the Capone tale.  Animals are so very in tune with what we can't even fathom. 

    Hugs to each.  Hope everyone is coping today.

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  • blondiex46
    blondiex46 Member Posts: 5,712
    edited July 2013

    Cammie so glad you are smelling so wonderful and lustful now...and you do whatever you need to do for you...

    Lori you are welcome, glad you and DH went out for a ride...

    spook, teka, jazzy, HUGGSSSS!!

    Scan went well...of course I asked the oncologist if they were going to stick me or give me anything and he said no and they did (sugar water) and I had to sit for an hour, played word search on my phone....it went ok, now for the results....by wednesday....feeling ok, still out of breath, and forgot and straightened up my room and of course got out of breath, will I ever learn, I found what I was looking for tho, lol....

    bb tomorrow....have a good night!!

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2013

    Hi again hermits! Came in from a 30 minute walk with these tenderoni feet of mine and it feels like I ran a marathon. But I did okay and will soak my feet before bed and hopefully all will be well tomorrow.

    Cami- I totally understand coming off the AIs. I have read a number of women on my arimidex thread have either had to come off them for a few months and/or hand to change up which AI they were taking. I am sorry that the aromosin has impacted your quality of life so badly. I am sure your MO will help you to know what other options exist. Quality of life is really important.

    Spookie- thank you for your input. I am taking 1000 mg of CA and 2000 of Vitamin D. I have been low in the later off and on for years, which may have contributed to the start of the osteopenia. I am doing weights now and also trying to get more weight bearing exercise in with more walking. I had problems with my feet last year before all this began so not sure if it's related or not, but walking is sometimes not much fun. 

    Lori- so sorry you are having a hard day. Chemo tears. Be gentle with yourself today. Those around you will adjust too.

    And I found out why my sister was in a twit this week. She had to go in for her herceptin infusion and was also having the mammo on her remaining breast. She was scared, but and all was fine in the end. We are going to Hawaii together in a month so I am going to suggest we declare our vacation time a vacation from the whole conversation around our bc. We both need a break from this whole thing.

    Blondie-fingers crossed for the PET scan results.

    Time for bed. Rest well hermits!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2013

    I had a phone consult with worldrenowned oncologist and he said AIS build up over months but that evidence is beginning to show that taking a break for a couple of months actually makes them more effevtive, as well as giving us a break.....so it may get to be recommended advice to take a break every year ....

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2013

    Good morning hermits!

    I saw this posted this morning on FB and just and to share it with you! Enjoy and have a lovely day!

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