The Hermit Club
Comments
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Lori crying doesn't show weakness, it shows thinking. So cry if u want to (I know u'd cry too if it happened to u) and old song. Let it out and sometimes things for some strange reason do work out but it's difficult to see thru tears, but they will stop, u'll see. And sometimes u need a higher dose or another med to mix with it. This is a very difficult time how can u not want to cry. But seeing a therapist is a good step and u'll see and understand more---u'll feel better and wonder how u got so strong.
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Slick thanks so happy that you have support that is so important and please come back here....we love new people...you are not whinning....you are scared it is ok....
Lori you are a newlywed....congrats....
am taking an antidepressant but zoloft....if you need it you take it, me didn't think I was depressed a friend of mine and the dr. decided I was...
Cammie so happy you are going out with your friends, hermitting is fine but we need to go out in public...me went to Walmart for food to get read for chemo cause I will not be able to go much of anywhere for a couple of days...
Jazzy Hawaii the big island so excited for you...well said to Slick, you have such a way with words...
OK according to dr. results of PET scan say no progression and shrinkage so I will look at the PET scan results and get a copy tomorrow when I go to chemo....will be back but not tomorrow....thanks for caring...
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BlondieX46: that is really good news! I'm so happy for you!!! And thank you for your kind words & support.
Lori1020: Crying is ok, let yourself be sad, give yourself a break! You are taking all the right steps to get help & support, just give it a little time. If you're on meds & still sad/crying, perhaps talk to your Dr about switching or changing the dose. You are doing the best you can & that is always enough!!!0 -
Hi hermits- another rainy night but not quite like the deluge last night. All rain is good, big and small, in the desert.
Lori- so sorry things are so difficult. I think going to talk to someone, having them look at the meds, maybe some ways to talk to the people around you may help. Wishing you peace.
Blondie- good news on the PET scan. So glad to hear it. Time to exhale.....
Feeling tired this week. I seem to have problems falling asleep so I am not getting enough sleep. Think it may be related to arimidex. Feet are doing better, but then some other SE gets worse. Been coming home at night to nap for awhile so just honoring what the body needs. My project team is all tired too, may be all the dark clouds and rain which we are not used to here. I am going to take something for sleep tonight!
Cami, Teka, Slicki, Markat, and all the rest, hope you are doing okay. I am with Teka on needing more play time in the cabbage patch.
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Perfectly put... need more play time. I think we all do!
blondie--happy news!
Lori--your tears are a good release. I'm sorry you're having to go through it, but as others have said, you'll make it! Ah, bunnies. So soft. We had two, who ate all my geraniums! They loved those plants. Long ago...
slickchickie--in college, my roommate and I could not bear to kill a tree for our Christmas...so we adopted a Norfolk pine and named him Sebastian. He lived seven years. (I'm glad to know a kindred spirit out there named a pumpkin!!)
Teka--I was pretty grumpy a few months ago, since all my students are so media/technology saturated. All they want to talk about is social scandal, R rated nonsense, etc. But then, I drove by a neighborhood of kids playing hide and seek in the yard--and it renewed my faith in imagination and fun. There's something innocent in hide and seek...
Camille--glad you got out with friends. I had to get out today for "professional development" for school. All day in a 58 degree computer lab. brrrr
Jazzy--any hints on foot improvement? Mine get worse as the weeks go by. Frustrating. Happy for your rain. It has been five weeks with none here, so they say on the weather...
markat, Laurie, Thinking of you. Hoping you are coping and healing.
Sweet dreams.
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Skittle and Slick jist a quick note---u name inanimate things---how would u name u'r kids===Rover, Snowball???
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Hmmm, some would argue that Rover & Snowball are good names, Camillegal!
Skittle, we are 2 peas out of the same pod! I bet Sebastian was a beautiful tree!
I wonder when I'm going to start sleeping without pharmaceutical help again...been off the chemo for almost 4 weeks. Haven't slept well in 5 months! Ugh.0 -
I'm sorry slick, don't go by me, but I'm still on them.
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Skittle- here is what I have been doing for the feet and it is a lot better this week-been soaking them periodically in epsom salts, having my massage therapist focus on my feet during massage sessions, and stretching my fee more often with yoga.
I noticed the massage really helped the most. Last week, when I put my left foot down after getting out of bed, it was almost too painful to walk on. Now my feet are still tender and stiff, but I can adjust easier and do okay during the day.
Do you have a good massage therapist who can work on your feet?
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Blondie, great news from your scan, so happy for you.
Slick, I too had trouble sleeping, and finally resorted to sleep meds. I really didn't want to have to put any more pills, but it wasn't worth going without sleep, plus it did not help my fragile mood. So now I sleep really good.
Yesterday I went all day without crying, just got misty eyed once. Sometimes I just want a break from gloom and doom, and be in the moment. Appreciate the sun, Fritzys soft fur and the way he stares at me and cocks his head as if he is figuring me out. Thanks for all your support. I have been pondering the possibility that maybe I like being a victim? I do think the issues with my husband can be "managed" instead of wilting when he is snapping at me, or bossing me around like his servant, I can call him on it in a subtle way. I just know that I can be strong, and really don't like to have to jump when someone says boo....especially not my husband.
Today is a beautiful day; time to soak up some rays...thinking of all of you! Have a good day....Lori
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Hey everyone. We've had some craptastic weather here. Today is actually beautiful.
I'm sorry for those going through struggles. It is such a stupid rollercoaster. Lori (((hugs)))
Blondie, yay about the scans!!
Slick, I was 30 at diagnosis but BRCA negative. I think family can have a hard time dealing emotionally with a medical crisis - ontop of previous strained relationships. Parents feel guilt. Heck, I already feel guilty that my 9yo might get cancer from me
I hope your surgery goes well and your relationships improve.
Hugs to all! Still cleaning and still spooning my way through the clutter0 -
thanks peeps...have to get a chest xray tomorrow, they want me to get oxygen cause still having trouble breathing and want to make sure that their is no fluid in my lungs, does it ever stop....
got the results of the pet scan and there were things they didn't comment on and the ln under my arm has shrunk some of the bone mets are stable also....yay...
Had chemo along with zometa yesterday and of course the steroids so speeding, lol.....
bbl
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Blondie that's why I hate all this chit, it just goes on and on. But I'm glad things are in control for u. Now with this lung thing hopefuly the x-ray wil tell them something.
Hey Markat I'm sure u'r stik doing loads of stuff, it;s a tough job too.
Lori see one day at a time and it works much better that way--otherwise it's just too much--and right get control of everything and it will help u alot.
Tomorrow I hve my Dr. stuff and I'll sleep over at my other Dgts tom. nite with Joey and prob come home late /saturday.. I want to use the pool so I hope the weather is good.
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Lori1020: I'm so happy to hear some hope in your words! It sounds like you had a much better day!
Blondie: Very relieved to hear the PET results were positive! Let us know about the chest x-ray, we worry when we don't know what's going on!
Markat: Thank you for being so nice! It helps to know that people understand & care.
Teka: Rainy in the South country, too.0 -
And Markat, I'm very relieved that you are BRCA- !! Much less likely that your cancer will be hereditary. Thank goodness for that!
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Yep we can only hope. My mom had DCIS in both breasts in her 40's and it wasn't hereditary either. So I guess either it was just a fluke or maybe our shower curtain, lol. My mom just passed away from a short bout of lung cancer. My heart aches every day *sob*. But such is life. I'm 32 now and doing fairly well besides the usual side effects from tamoxifen.
Camille good vibes for the doc tomorrow! Hope Joey is doing good!0 -
Oh markat, I'm so sorry to hear about your mom! I lost my dad to cirrhosis when I was 22. It's hard to cope with a parent dying, but adding BC on top of that seems so cruel. Now I understand why you are concerned for your son. I don't know how people ever get past the fear of recurrence, I have so much anxiety over that it's unbelievable. I can imagine worrying that a child may be predisposed to cancer is a similar burden to bear. What kind of side effects are giving you trouble? I'm about to go on that stuff as well.
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Thanks. I actually have two girls, 8 & 9 now. My side effects are aching all over, tired, grumpy and insomnia. Hormonal ups and downs, and difficulty losing weight. Typical menopause I guess. I still occasionally have a period. I keep forgetting to tell the MO about that. I got my period back 6 weeks after chemo ended. It's the only game in town though, and my MO says the side effects eventually go away. Either they go away, or you just live with it and take it. Some people don't get the side effects so bad, so don't base your experience from mine. I'm sorry about your dad
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Ladies....I'm sorry I have not been on in awhile. I just read all of your notes. THANK YOU from the bottom of my heart! Love all of you. I am at a loss for words about what you are going through. Please know that my heart feels what my mouth can't find the words for. I celebrate your victories and I grieve your set backs.
I have been in full hermit mode and have really shut down from stuff. My clients/friends keep trying to engage me and will not take no for an answer. Lunches, coffees, wanting to stop by.....I politely tell them that I am not ready to socialize as I "do not feel up to it yet", but they keep pushing. What they do not understand it that the "very act of having to respond" is an added chore that I need to avoid. Then the questions start...so I send out a group email or a facebook "update" about my current status and what is to come. However, it does not seem to satisfy them. SO many of them want my individual attention...they want me to recount the story, they have a million questions. They won't accept my watered down version, yet they can't handle the raw truth either. I feel myself becoming resentful and bitter. I feel myself closing off from most of them. I have to be very careful though as they are important to me and I want them in my life. I just feel like everyone wants a piece of me, but the cancer is taking enough.
I have yet to be assigned my new MO. It is supposed to happen in the next few days. (I have yet to send the letter about his treatment of me as I don't want to make waves until I see the other doctor.) I did however meet my RO yesterday and WOW!....he is amazing! A total 360 from the insensitive MO. I wanted to cry during the entire appointment because he was so informed on my case (without even glancing at my chart), kind, and soft spoken. He spent so much time with my husband and I and explained everything. He asked me a million questions and I feel like he truly cares about me. He decided on full breast radiation for 6 weeks and Arimidex.
My husband was stunned. (Here we go...going backwards again. ) He truly thought I wouldn't need radiation at all.
He goes back to his denial over and over. He said to me today.."I don't understand why the whole breast if you only had a small area of PRE cancer." I wanted to explode. We had a hard time yesterday. A big part of me feels like my husband doesn't think I should act like a woman with BC. I told him I felt that way. Of course he retracted, but it was too late. He said, "Why wouldn't they just do partial breast radiation?" I said that I wasn't sure, but that I would ask the doctor. I told my husband that he obviously had his reasons. My husband said, "I don't trust doctors." I said, "WHY would he decide this full treatment if it were not necessary???" He said, "It puts more money in their pockets." I am sad. I feel like he thinks all of what I have gone through has been overkill. I end up yelling at him, saying "You haven't read ANYTHING...you haven't ASKED anything, you haven't researched anything, but yet you feel you can make these "off the cuff" statements to me?" Then he retracts and says, "No, I'm just so sad you are going through all of this. I just don't want you to go through any more that is unnecessary. I feel like I can't say anything to you...nothing I say is right." *SIGH* What BC does to a family is horrific.
I worry about the Arimidex as my joint/muscle pain is already so bad (no diagnosis on that). The leg aches have begun keeping me up at night. They ache SO badly.
My daughter has developed an ovaian cyst and is in excruitiang pain. Looks like she will be put on bedrest for the rest of her pregnancy (she is due in December). She still throws up, gets horrible nose bleeds and such. The good news is that the baby is thriving! AND.........he is a BOY! We were stunned! We all thought girl because of the sickness, but we are thrilled.
I know this post is all over the place. That is how I feel...scattered. Well, I am off to the neurologist for a diagnosis on my problem from the IV I had. The hospital is taking responsibility and I am getting free treatment.
Thank you for listening yet again. Love you all.
XOXOXOXXO
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Hi hermits- just a quick check in here.
So much going on for so many of you. Wishing you better days, and know you have friends here who listen and understand.
Laurie- so sorry to hear what you are going through. Radiation is always paired with lumpectomies. The external beam radiation is the standard of care. Partial radiation is not, although for some it is better option with less SEs (such as myself). I agree with Teka, the RO is a keeper. Join the latest radiation thread on this site, it will be helpful to understanding the process. Things like how to deal with impacts to the skin, managing fatigue, etc. are all discussed.
I hope your apt with the med onc is helpful. He/she can help you with the management of the Arimidex. I have been on it for four months now and do have some SEs but have coped with that and lead a pretty active work and exercise life these days. I am on the Arimidex thread and some good things get talked about there. PM me too if you want to talk one on one? Your process is very similar to mine (lumpectomy, radiation, arimidex).
The best thing about the breastcancer.org site is all the different threads to help you through where you are in the process, as well as having a safe place to talk about our feelings, as we do here.
Your community seems to not understand your need for privacy right now and am sorry to hear this. I know I have said this here before, but will say it again, we are not beholden to anyone to discuss our process, how we are feeling, answer their questions, etc. I went through it myself, but perhaps with a smaller community. Letting folks know you will reach out to them when you are ready and/or if you need anything and then just not responding to the continued requests is sometimes the way to get the message through.
Also, I had a friend who had breast cancer and during her time of going through a lot of care, her sister set up a blog/web site to be able to update folks on how my friend was doing. If have a tech saavy friend that can do that for you, something else to consider if you want to be able to share updates with your community but don't have the time or energy to do it right now.
I am sorry your husband does not understand. Do you have a friend that can go with you to future med apts if he is not able to handle it? I am just a proponent of finding people that can show up when I need help.
Also, sorry to hear your daughter has to go on bed rest. Remember you have that beautiful grandchild you will be meeting in a few more months.
Got some work to finish up and a busy weekend ahead. Blessings to all the hermits here.
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Laurie I know we all understand how u feel---To this day I barely talk about things and to many questions still and I don't want to be bothered. But I also understand the people who care about u want to know and maybe help if they can--Physical things they can help with but it's much harder with our emotions. And I think u'r husband summed it up actually he doesn't want u to hurt any more but can't stop anything from happening. He has no control. and u'r right what this can do to a family is turn it upside down and thats where u are right now. But again it will pass.
U'r Dr. sounds wonderful and glad u got him, maybe now u wikk settle into some peace of mind. And Jazzy has a good idea if u want to do that to keep u'r friends up to date or maybe even tell one with a heart to heart talk and she can help with questions for everyone. It's tiring I know.
Even when I go out I don't wear all my junk for my LE--to many questions from people I don't even know and I'm tired of saying all the accidents I was in, boating accident, roller blades, skiing-I'm 68 like I would do anything like that. But I'm not going into my history so I just don't wear things like I should--so don't feel bad about where u are now, I think it's kind of normal. Well at least for us. Now maybe if we were drama queens we really go into everything for anybody. They'd be sorry. LOL
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Laurie: I completely understand about people pushing you for your time & just "the act of having to respond" being a chore. Respond in your own time or not at all & be prepared to someday say "sorry that I haven't been in touch enough, had a rough patch". Trust that for most people, that will be enough & they will completely understand. Now, I am no expert on husbands but it seems yours is still trying to accept your initial dx. I suspect that every surgery, every treatment is likely very shocking for him. It seems he loves you very much, which is awesome! I am sorry your daughter is having such a tough pregnancy, I hope things improve for her soon!
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Laurie I am so sorry that all of this is going on the same time....As far as the PEOPLE, you are going to need to take a stand and tell that when you are ready you will connect, it isn't your fault, they are looking for something maybe answers....as far as your husband Marc is right, nothing was consistent and it is preventive.....he is having a hard time and in denial and doesn't want to think of you going through this but the whole family goes though it even if not directly and they don't know what is going on, it is in the air...and no matter how many people are around you it feels like you are alone cause you/we are, it is/was happening to us not to our family members/support people/parents etc...they can be there but it is happening to us.....we are here if you want to vent or just to talk.....hang in there....do something nice for yourself, even if it is just a bubble bath....
Wanted to let you all know that the chest xray showed plural effusion so they are making arrangements to drain it on monday hopefully..not sure how much was in there but had my left lung drained last september and this time it is my right lung.....it sucks...
HAPPY SATURDAY!!!
BBL
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Blondie- so sorry about the pleural effusion. I had a friend that had that once and know it is very painful. I hope things go well on Monday, and that you are feeling better soon. Thinking of you.
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Blondie, I'm sorry & I'll keep you in my thoughts. I know you must be in pain & I hope that you are feeling better SOON! Hang in there, chickie!
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Good morning hermits. Wishing you a good day!
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Good Morning,
Laurie, I am so glad you vented your feelings here, I can very much relate. I went to a rummage sale once, and this woman started asking me questions, and I had never met her! I was polite, but left shortly after. I find that I don't really want to talk about the cancer. I went to Lacrosse to see my son play in his band. I ended up feeling anxious about being around people. My daughter met me, whiched helped a lot. My ex husband was there, and we ended up talking, he was very nice to me. I suddenly started tearing up, and had to do the blinking thing to get the tears to dry up before they came down my cheek. Don't ask why this happened. God one day I am fine, and the next day I get emotional....so weird, I DID NOT want to cry in front of my ex....so this week I will meet one of my former staff for lunch....it will be ok, she is sweet. I think it is hard to deal with people who ask questions, I have said I just don't want to think or talk anymore about it,(when I feel I can muster up to courage) it seems they haven't been offended by that. Laurie....just be ok with where you are at, I have a feeling you will come around when you are ready.....
Blondie, I will be thinking of you....wished you didn't have to go through this.....if I saw you I would give you a giant hug, but I can only send imaginary hugs ......Take Care Everyone
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Laurie and Lori (((HUGS))) I'm so sorry for all the ups and downs.
Blondie sending you good thoughts about the drain. Did your ex ever fix your car?
Jazzy wise words!
Camille I love your pics and jokes. Hope your weekend has been nice!
We bought one of those ridiculous inflatable water slides for the girls. It allows them to get outside and exercise and play with friends and lets me still hermit a little ;-)0
