The Hermit Club
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Oh gtreat now I want taco Bell----Thanks alot
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Hello - seems like a nice group here
I've always been pretty introverted, though I've had friends where we share a hobby or interest. I kind of distanced myself from a lot of the people I used to socialize with back when I got divorced in 2004 so I can't blame the cancer for my current lack of local friends. I tend to find it easier to talk to people online though so I do have some really good online friends (though only a few have I actually met).
I've been overloading on information over the past few months now - both on cancer and diabetes, both of which I got diagnosed with this year. I try not to bore my live-in boyfriend with it all too much. He does listen but he feels that the decisions I have to make are mine and that he trusts me to make the best choices for myself. He does a good job of making me feel 'normal' and he makes me laugh.
My family is supportive but they all keep reminding me that they really don't know much about what I'm dealing with so I try to keep them up to date by email and answer questions but they are also good about not letting it dominate family gatherings. So, it's been nice when I can visit with them since they help make me feel more 'normal' too.
I haven't told too many people at work yet but with chemo now in the picture (hadn't been expecting to have it), it will become pretty apparant in a few weeks. I've been working in the same place for over 20 years so while people don't know me on a social basis, some would definitely notice any drastic changes in my appearance. So, I'm thinking of just going scarves for the most part since you don't find many wigs pulled back in ponytails and I will just field questions as they come. (I have worn bandanas on my hair in the past so I think that the scarf look will feel the most natural to me.)
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I found out yesterday that I'm going to have to go through chemo. I spent the day alone crying, not crying, etc. It didn't help that I watched part of the Bucket List and a Hallmark Movie about a girl with cancer. I think I'll stick with the Olympics for a while
. But I did caulk my bathtub and iron 2 sets of curtains today. (Housework does help me, too.)I'm so glad I found this site and that I'm not alone with my feelings. (I know my friends and family are concerned but do you ever get tired of people asking you how you feel?)
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fgm---thst's one of the reasons we keep to ourselves as much as possible. LOL Of course we are in public places and meet up with people but sometimes as chemo goes it's tiring and questions just take up so much energy, especially the same one. so we kind of keep to ourselves. But anything said herr is great we all understand one thing or another. And BTw welcome.
Jinkala Welcome too, we are a nice group and feel very free her in stating our feelings and thouhts. We get it. And we know people say things with care (most of the time) but it does get tiring. Bit when u'r working u are with eveyone all day and questions get asked all the time--and u have a double whammy.
I'm sorry u both have to be here, but it is a safe and honest place to be, but u have plenty of topics and loads of answers. So it might make things a little easier for the both of you.
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Hi, ladies. I hope I'm not intruding on your conversation. The subject line caught my attention because I think it describes me perfectly. I've read through all of the posts and can really relate to so much of what was said.
My friends are very well intentioned and started a group for me on Facebook. I find it hard to even update them because I feel like people think I should be past it now. No one has said that, but because of all the rah-rah pink ribbon hype about breast cancer, I feel like most people have a distorted view of what this disease actually entails.
I hope you're all having a pleasant weekend!0 -
Welcome everyone.
LRD - you state exactly how I feel - people think they are doing us this grand favor by saturating us in the "rah rah pink stuff" and that barely touches the surface of what we are dealing with with BC. It is a great disservice. I guess people mean well but they need to be educated on the realities of BC. I talked about my BC at first on FB and then I emailed everyone and asked them not to discuss it on my wall anymore. So I still update the people I choose to talk to and a large group of "internet friends" but the rest of the time, I just don't discuss it.
fgm - sorry to hear that you recently got news about chemo. If it helps at all, I am nearly done - 7/8 of the way through and it hasn't been the nightmare I was afraid it would be. Do you know yet what type of chemo you will have to have? Yeah, the movies don't help do they???? I am watching quite a bit of the Olympics too. Wow on the caulking and ironing - impressive!
Jinkala - wow, a double whammy with BC and diabetes. Good luck with chemo and deciding what you are comfortable with. I have a nice ($$) wig but with the heat I am going with scarves and caps this summer.
I think tonights poor food choice will be pizza!
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Lintroller--u r so right it's how most of us feel===pretty in pink---I think not. That doesn't even touch the surface. That's why it's safe here, not out there LOL
And K so far u'r choices of food are really good.
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Lintroller--u r so right it's how most of us feel===pretty in pink---I think not. That doesn't even touch the surface. That's why it's safe here, not out there LOL
And K so far u'r choices of food are really good.
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In a weird way, the Diabetes has helped somewhat. Having to pay closer attention to my diet and its effect on my blood glucose has given me something that I can have some control over and focus on. I have lost 35 pounds from a top weight of 260 since I first got diagnosed with the cancer mainly through changes in my eating and controlling my portion sizes. I don't like having to limit a lot of the foods I loved like bread and pasta but I'm doing well and finding new foods to enjoy that don't spike my blood sugar.
I'm not on facebook but I have considered joining it just to have a single place where a lot of my family can read updates if they are interested.
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This also describes me - I would rather hide in my house as step out anywhere.....if I do go out it is a really fast trip to the grocery store, or to pick up my perscriptions.
I don't have to worry about any friends coming over, they seem to have forgotten about me since I started this terrible scarey journey. Family does not live close, so guess I really am a Hermit. I worry about the day one of my friends does show up at the door-- will it be just to see what I look like or because they care.
I have two more chemo treatments and then will have to move into the city for my radiation treatments.
I think I have made a mistake by not wearing anything on my head -(love the freedom in this hear)-- now I seem to get a headache everytime I put something on.....must just have a big head, really dread the day I will have to put my wig on.
Hope you are all having a great day.
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Ellen pick hats or scarves it's not so bad--It didn't bter me alot but my cousin has said her scalp hurt alot so may that why it bothers u.But I did order big. cuz I really do have a bi head. But when u'r all done u will be getting around more u'll se--What's going on now for u is dreadful so don't blame u'rself--it will pass
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Thank you for the warm welcome, kltb04 and camillegal!
I was never really outgoing before diagnosis; however, I was much more sociable then compared to now. I'm 35 (34 when diagnosed) and the first of my friends and peer group to get this wretched disease. I have always had a lot of support, but I still feel isolated because my friends just don't get it--and much of that is thanks to the pink ribbon culture. I feel like if we don't emerge from treatment with a triumphant battlecry with our war paint pink ribbon and the standard script about "awareness", "early detection", and XYZ activity "for the cure", then we're viewed as not doing it right. Does that make sense? For me--someone who already tended to isolate myself before breast cancer--feeling like a specific survivor mentality was supposed to outline my behavior post-treatment has only served to make me retreat further within myself.
I find myself hitting "Ignore" when my phone rings, taking forever to return a text or email, and procrastinating updating my wonderful friends and family via the sweet Facebook group. I desperately want to get a job and put my degree and education to use. I'm trying to break my severe hermit tendencies so that I don't nurture them. I love privacy and solitude, but I fear my hermit-ness (lol at the cute word) could be a slippery slope and I don't want to slide down much further.
Sorry for rambling, but I think you're very right, camillegal, about it being safe here and not out there.
Sweet dreams, everyone.0 -
Hi KitO4 Congrats on one more session. I'll have 4 sessions of cytoxan and taxotere. I'm scared but all the people on this site have really helped. I'm so glad you said it was doable. Thanks a lot and good luck to you.
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LintRollerD- glad you posted on this thread. You bring out many good points which I relate to.
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Me too Lintroller........love your screen name
. Welcome!0 -
I feel safe here! The other day I said I wanted my life back. Today my spirits are much, much better and I agree with kltbo4 'I just want my life.' I want to appreciate every day. People on the outside always say I am such a positive person. Most of the time I give that impression and no one ever knows how afraid I really feel. Tomorrow I start a new series of chemo (taxol) and the last few days it has been on my mind constantly, keeping me from enjoying the moment.
My eyelashes just started falling out and it wasn't until I read it about it here that I made the connection why my eyes were itching all of a sudden. Ha, sometimes I am so out of touch...
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Thank you, lisagwa and Sissydi, for the kind welcome!
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Anita: I'm sorry that this is happening. It's frustrating when people don't know how scared and lonely we feel. I'm glad you found the site and this thread. I hope we can make you feel better about what's happening to you.
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Ok I was thinking WOW I know---I think we are like most cancer patients we just choose to face and admit it. The point being everyone waits for that next test, next infusion, next rad, nest everything until it's over, then u start meds and it's not over for alot of us. It's on u'r back for a while wondering, waiting for the next shoe to drop, even if it never does. And as I said before the pink ribbon looks happy and oh let's help with fun--And lot of us now are turning from pink --not cancer--but the prettyness of it. This is all ugky and talking with all of us seems to help somewhat. No one can judge how one person takes it we are all so different except for cancer and some are more like us. We tend to not want to share our lives with people we know won't get it--cuz the PINK makes it seem like u find it, take care of it and it's gone. And altho so much has improved in methods, chemo we still have our own feelings and it. nice to come to a place where we can voice them---Oh wait did u think when I said I was thinking I found cure? --No I just think out loud and ramble and I have chosen to ramble here
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Camillegal, you and I are in 100% agreement. Very well said. We are always waiting and wondering if the other shoe is going to drop--maybe it will and maybe it won't, but it will always be there with us--and pink ribbon culture, at least in my opinion, leads those without breast cancer to believe that once it's treated, you're done. Voila. Just like you said. To many, breast cancer is still viewed as "the good kind of cancer to get" (how ridiculous!), and these kinds of societal mentalities make it harder for many of us to not feel isolated after treatment. I know it certainly has for me.
Speaking for myself here: several years ago, we did need the awareness campaigns and education. Desperately. It worked, and so many people became cognizant of breast cancer. But now, too much focus is on awareness rather than cure or prevention. What leads to me feeling even more like a hermit is that when I was diagnosed, there was so much shock and disbelief because I was so young, had no family history, had to fight to be diagnosed because doctors kept telling me it was nothing, and finally it turned out to be very aggressive; the result was my loved ones (and people I barely knew) stepped in and embraced me which was wonderful, and this journey of mine became public. I was isolated in the middle of all that attention and good will because of the disservice of the pink ribbon. So many people that I know viewed breast cancer as a hiccup or a bump in the road rather than a very mean and deadly CANCER. The pink ribbon makes much of the breast cancer experience seem benign and cutesy. This has been a MAJOR hurdle for me in trying to be less isolated and alone.
Getting off my soapbox now; and again, I'm sorry for rambling.0 -
All of the awareness can't stop you from getting cancer and yearly mammograms still don't guarantee that it will be caught early if you get it. That is often the first question I hear when I do tell someone that I have breast cancer - they want to know if they found it on a mammogram. I'd like to be able to tell them 'yes' but in my case it was not only a 'no' but even knowing there was cancer, they couldn't find anything on the mammogram or an ultrasound. It was just the Paget's which looks a lot like a chapped or sore nipple (which I assumed it was). It took an MRI just to find anything at all other than the Paget's and then it was just a small area of DCIS.
Of course for me, I really would have been over and done with once I had the mastectomy and I could have just picked up my life and learned to deal with a fake boob and little things like that. Unfortunately they found a small bit of IDC that was HER2+ in the tissue removed during the mastectomy so now I'm looking at at least a year's worth of treatments (chemo and herceptin) and a lot more worrying about possible stray cancer cells finding new homes.
I was at my sister's house yesterday. I had a good time but we did talk about cancer and chemo related stuff (and diabetes too) more than I would have liked. The family is curious though and they care so they ask questions and I don't really mind sharing what I've learned with them. I just hate feeling like my situation is dominating conversation sometimes.
Ah - just about time to head to my MUGA appt. It will be my first one. I don't really like stuff like this because I'm not that great at holding still. At least with this scan though, there shouldn't be anything 'bad' to find.
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Ugh, the did you find out because of a mammogram question makes me so mad. Yearly mamos are recommended starting at age 50, some now say at 40. I'm 37, so no, it wasn't. It would have been nice if I had some reason to get a mamo at oh, maybe 27 or so, when it was still small, but who gets a mamo at 27 for no reason?
The pink awareness crap is just extremely annoying. I was aware to the "fact" that BC isn't a worry till you are in your late 40's, because that's what the TV said. I was aware that I was at a very low risk of getting it, because that's what the poster on the wall at the health dept. said. I was also aware that it doesn't cause pain, because that's what my first Dr. who told me it was nothing. Whenever I see someone with that pink crap I want to tell them, to yell at them, the truth about this crap. It is in no way pink.
And I'm ranting now, so I'll shud up lol
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Stormynite u'r rant makes me laugh, sorry but everything u said is so tru--U'r so young for this crap--I am sorry. And Jinkala I certainly hope the best results for u, I know chemo is no fun but sometimes it's not as bad as u think--oh that was stupid to say, I could just delete it, but that's how stupid I talk too--my brain freezes up. I'm just sorry u have to o thru this too. It's all crap.
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Jinkala I had a MUGA today too! How was yours? Mine was okay. Around 60%.
The pink stuff gets on my nerves. I was 29 when I found the lump and 30 when I finally mentioned it to my doc. I kept thinking it would go away
I read all the stats and figured it was just a fibroadenoma. 0 -
I know - pink just isn't a scary color - but cancer is scary - and unpredictable - and can show up in so many different forms - at any age.
I had never had a mammo before - I'm only 47 now. I was going to resist getting one as long as I could too. BC doesn't run in my family and very few of the risk factors applied to me (pretty much just that I hadn't ever had kids) and I tend to just assume that if I feel okay, I'm fine. I know that isn't a great attitude when it comes to some things but at least I wasn't worrying about all sorts of stuff needlessly either. I think my Mom only had one mammo in her life, years ago, and she hated it so much she refused to ever have another one. She's 85 now and not in great health, but she doesn't have BC as far as we know.
Camille - I know what you meant. Chemo isn't fun and I have to remind myself that it isn't going to be as bad as it was when my Dad had it back in 75. Things have improved a lot since then. From what I've read here, it's different for everyone but for most of us, it is tolerable and worth the trouble.
I'm in reasonably good health though overweight. I seldom get side effects from medications and when I do, I get the mild ones. I'm not allergic to anything that I know of. About the only thing that might be an indication that I might have issues with nausea is that I'm very prone to motion sickness.
The MUGA went fine. I had a little claustrophobic issue when he loosely bound my arms to my sides (felt hot, anxious and knew I would have trouble holding still for long) so I told him and he took the wrap off and let me hold them close at my sides. It was more physical effort but I can hold still better when I'm not feeling anxious and confined. (I didn't ask what the actual result was but he didn't say it was abnormal - I'll ask my MO when I see her unless I get a lab result listed for it from Kaiser online)
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Markat u'r only in u'r 30's--OMG u r so young I'm sorry u have to go thru this.
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Jinkala--I'm glad it's done--the confining test altho have no pain factor are my toughest I hat all the tubes and not moving and arms down Then the nuclear test still no movement. I don't even know the names but when I walk into the room I know what it is. LOL One of my tests I don't know what happened to me--normall all of them I just did and didn't give anyone a problem--but this one time I got hysterical in this tube and started yelling get me the F*** out of here over and over til they did, So they sent me to another place with an open end and immediately the techs said u won't swear at us will u. I didn't swear at anyone--it was very general and they were so so nice. My Dr. told me when she heard that she couldn't believe I would do that. I was like why not I'm always saying things here, she said but we're used to u. The whole floor knew and laughed. Humph LOL
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My wife informed me she has a fast growing lump in her breast. It has been there for some time. We aren't intimate, as we are older and she jerks away if she thinks I am about to rub against her. She won't see our doctor and refuses to have any associated treatment or surgery. Her plan is to be too far along to do anything about it when and if she see's the doctor. I've printed out lists of female doctors and tried to get her to go with me to a clinic to no avail. She's asked me not to talk to our primary doctor about it. I respect her decision, but fear for the worst if any pain sets in. She'll have to go in for some sort of prescription at that time. Her youth was terrible with unimaginable obstacles and can't quiet the thoughts, even with therapy. I'm sure this has a lot to do with her reasoning and she simply wants to leave this earth when her body is through without any fight to prolong it. She has asserted that the right combination of pills will take care of everything at the proper time and is constantly coaching me about things around the house that only she knows. I can hardly stand it and try to be cheerful and accomodating as much as I can. Can she really do this? Should I have her put in the hospital against her will?
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I know this doesn't sound right but everyone has their own right to choose what they want to do with their own body--but I would like to think that u as her partner have u rights too. And u'r right would have to be going behind her back and doing what u need to do. Cancer or not she sounds like she does have a great amount of mental problems to deal with. And she's going to be mad as hell at u, but u sound like u do love her and a compassionate person so I would go ahead and stand my ground and do whaytever it takes to get her in a hospital. Talk to her Dr. u'rself and see how to approach the entire situation because u have more than one thing going on here. She needs help and at this time u'r the only one that can try to help her. Good Luck
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If you are judged to be a threat to yourself, others, or you are gravely disabled and/or you lack mental capacity you can be forced to have treatment. If none of these apply, you can not force her to do anything.
Ignoring her wishes will not change her mind, it will just make her mad and you will lose her trust if you do things behind her back.
It sounds as if she has made her plan and means to stick to it. Unless she is mentally impaired, you have no choice but to respect her wishes. As hard as that might be, we should all be so lucky to have the choice and have people who love us try to understand.
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