The Hermit Club
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Hi Lily, u know some of us have had to change how we dress, I know long wear V-necks which were my first choice in every top I had cuz they were the most comfortable, now I have to think about these tops and can't feel the way I used to but I found new ways to wear tops with disguise, but it is different for me cuz I don't mind that I have no boobs, I really don't miss them or feel anything about them being gone, so it is different for me--I think if I had a DH or partner I wouldn't feel comfortable showing them but who knows, We all look at our circumstances differently, I look at it as the choice I made to survive, it gives me much more time with my family and friends so how I look is the price I paid and it means nothing as long as I'm still here. Each life is precious, but sometimes it comes with a price of something and I feel it such a little price to pay to stick around longer, but I know u haven't gotten this far in feeling, but as we all said this isn't about vanity or beauty, it's about our inner self and right now u are fighting with that--but the fight gets tiring and it will end and u will be used to this more and more and u'll see u'r not so different.
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I have one breast still and for me that is more complicated as the lack of symmetry and not looking like a lop sided freak is a big deal for me, having one breast reminds me i dont have another one........and I HAVE to use prosthetics to look ok or balanced.......i know I don´t make sense and I wish I could feel empowered instead but I don´t, its been 20 months now, I had started to feel better but now just feel beaten and hopeless, i have no hope i can move forward as its fraught with problems and pitfalls i had no idea existed before.......what if i carry on and then the very last op fails and i am back to the beginning again??..I know I am pathetic.....
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Hey ladies, I have an appt with PS this am and I am kinda freaking out. Lily im I correct in thinking you are lopsided? I was all set on single mx now all I can think about is how it will look afterwards.....
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Yes i am lopsided, less so since i had a reduction on my remaining breast, but nonetheless still a Cyclops without a prosthesis.............can you get immediate recon MereMere, they are the best recon to get......? Before reduction there was a significant weight difference which gave me neck pain.
Teka - i asked in first place and was told no....they would not do it, now I think I would rather try and find symmetry with recon........
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Cami, did they end up cancelling school. I think it's wonderful that Joey likes school. I will remember pure aloe. When I opened the Aquafor, it made me think of aloe right from the plant.
blondie, sometimes I go out for a food treat too ... sometimes the thought of a Starbucks will get me in the mood to run errands. What is boscovs?
Teka, I hope the Fire Department raised a lot of money from their breakfast. Did you have fun?
Jazzy, the snowbound kitty is precious. I know how it feels ... not at the moment but in memories. After you mentioned Talbots, I went to their website. My intro to Talbots was on the east coast too.
Lily55, I am happy to see you posting again. Even when you feel down, come talk with us. We care. I wish I had words or ideas to help you.
dutchiris, awhile ago, I ran into an acquaintance who now works at Victoria's Secret. She told me that everyone belongs there. I think I will drop in when I am at the mall next time ... I have never even gone in the store.
Wow, Paula, you were truly an organized errand runner on Saturday. I could gain a lot of time if I organized, but I enjoy my disorganized approach to life.
I was behind on reading posts, so this note has gone on quite awhile. Before I lose it, I am going to submit it and start another.
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I opted for the bilateral mx. Lily may I ask why you only did the one? After talking with surgeon today I'm ok with losing both. Plus I have such an extensive family history.... I wish you hope, love and acceptance!!
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kathec, it's wonderful that you like your endocrinologist. Would you mind sharing some of the good things to eat that she suggested? I also find jounaling helpful.
Sometimes I call my writing A Letter to God. After I write, rewrite, and reread, when I am ready to let the topic go, I rip the letter up and think to myself that I have sent it to God.
grammaB, you said the bad weather was skipping you. Is that still true? The Arctic cold on the weather person's map seemed to include you. Maybe my geography is off ... I will have to check out Montana's location.
Jazzy, lavender oil ... I use lavender body wash as a bubble bath but never thought of just using the oil. Thanks for the idea.
Teka, I had lemon meringue pie out of my mind until you mentioned it. I love it.
Soteria (Paula?), what a delicious sounding lunch and, how lucky, a fantastic boot deal. Some days just rock!
I am still behind but have to sign off in order to make a doctor's appointment. Take care everyone.
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i was not given any choices at all.......lose breast and all lymph nodes, but one only.......they refused to do both and refused me my right to immediate recon. So now i am on my own......they are not interested in the impact of THEIR decisions for me. As they constantly told me my prognosis was poor i allowed myself to be scared in to going along with it, there was no other option and the cancerousarea hurt and was vlearly visible
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Lily what city and state do you live in.....That sounds like something out of a bad movie......My BS asked for my family, meaning my children to be present while he explained the options after my dx, and the biopsy...in fact they were in the waiting room while the biopsy was being done......
He gave me all my options, and also a couple of examples of other patient's who had similar diagnosis as mine, and what they did, but assured me the final decision was mine.....
I feel bad that you got such treatment, and such a shame that there wasn't someone with you to ask a lot more questions....................did you ever at the time consider a 2nd opinion, since his suggestions were so antiquated............the shock is such that you don't really think at the time..........
I am also shocked that he would pain such a dark picture to you before he even got to do your surgery...I guess it takes all types....
Was just curious as to where you are located........hugs.
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i am in Spain,in public health system, no second opinion allowed, just told how serious it was and that i am high risk of recurrence, they were shocked i refused chemo
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lily, that explains a lot.....I am just so amazed at the care given....I guess we are fortunate here, that we have choices, and compassionate doctors, who allow us to decide how we will handle our health....
It is not hard now to understand your frustration....did they tell you how the chemo would help, or did they handle that the same way.........and was there a reason you refused chemo.......
Either way, you have to fight for yourself, and remember we are hear for you, even though we are a whole ocean away.....come here for support, and understanding........the important thing is you don't give up....stand up for the part of your healthcare that you can........be tough , you can do this, when you get stuck..........ask the ladies here what they did, and how they handled it............remember you are your own advocate, your life lies in your hands.......let no one ever run your life........hugs, and prayers
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Oh Lily now I do understand more---but how could they just leave u like that. I thought Spain was more up on medical issues. Having one breast is terrible, it actually leaves u'r balance off too. I too had one breast for over a year and it is no fun--my ins. wouldn't ok it. Well then there was no choice and I got the other one done and I actually felt much better. But in some ways u'r hands are tied due to u'r healthcare system. But someway, somehow, there has to be a way u can get this done. And why did u refuse chemo??? Is there something in Spain that's different? Sorry we're pounding u with so many questions, but we all are tying to help u in any way we can. Ducky sometimes I lurk a little is there anyone from Spain on anything u know, cuz off hand I don't. Damn. This is all wrong.
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Welcome Meremere---u are a furbaby lover, Oh this is great Love it
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sallys70, she told me that i could get all the calcium i needed, by eating two servings of yogurt a day. then i went to the store, and there is really an amazing range of difference in the amount of calcium in different brands. i tend to like the thicker ones like the greek kinds. and keffir, which is like a drinkable yogurt, has even more! and then we talked about dark green leafies! which i do love, but have been training my man to eat. and to just keep taking my vitamin D with cholecalciferol. good for bones, and i found out it toughens the blood brain barrier, which could keep a cancer cell from going there. one of my greatest fears, since i have watched two of my friends with cancer that went to the brain. not fun. Lily55, if i was anywhere near you, i would hold your hand, and kiss your scars. i would take marking pens and draw flowers and hearts and cats and dogs and four leaf clovers and stars all over you. when my docs told me my stage, they told me i was still curable. and i did do chemo, cause i want to live. but they were not really honest about its special effects. and i am still not convinced that i am cured. i have a lump on my ribcage,cancerside, that is painful to me, and does seem bigger than a year ago. they keep telling me it is my rib. i think that they are in for a suprise in two weeks when i go in for my next mammo. because i think it is something. something scary again. it is why i have not spent too much time here, because i have been trying to get ready in case the beast is back. i dont think i am making things up, i was not even worried about my last 6 month follow up, but this time..... i have been having a lot of nightmares, too, has anyone else had them frequently since diagnosis? i am loving all hermits, and wishing you well.
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Kathyec- I have a lot of anxiety before the follow ups. I just made an apt last week to begin the next one in another month, that will begin in mid Feb with the trip to the breast surgeon followed by the mammo. Sometimes I think I feel things, then I don't. I have a lump in there called a fibroadenoma (benign) and have felt it but then wonder if it's in the same place, has moved, is that it? It is crazy.
I hope the lump near your rib is nothing of concern. But I understand your worries. Once you have had cancer, you always are reminded it could return. But we do the treatments recommended for us and hope for the best.
Well, we are here to share your worries, bad dreams and the rest. We have them too.
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I'll be sure to keep Kris away from fire hydrants. That's funny!
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I'm having a bone scan on Friday. Of course on a Friday so I probably won't know anything until at least Monday. I've been having back pain. I keep thinking things like even if this is not cancer, they'll find it somewhere else. I'll be so busy worrying about this pain or that pain and will turn up in an area I wasn't even considering. Then again there would be no consolation in suspecting recurrence and being right. OMG I am rambling.
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Lily, my heart just goes out to you. I can understand in a way your difficulty dealing with your new body. The part about being unsymmetrical is disconcerting. Not even considering all that you went through after the original sx. That was a big reason I decide to do the BMX. I understand you are in another country so that may not have been an option for you. Here in the US there is a law that ins co's must cover sx to create symmetry. In my case I was not doing any recon so the BMX made me symmetrical. I'm sorry that is not the case in your country. Know that you are not a freak. You are a strong woman that did what she had to do to battle the beast that is bc. I pray that in time you will begin to accept that and be able to love yourself and your new body again.
Just read further and saw that you refused chemo. Does that fact effect how they are treating you? Because you refused part of the prescribed treatments? It still sounds barbaric the way they are treating you! ((hugs))
Welcome MereMere!
Sally, I am on the western side of MT, the cold is hitting the eastern side, on the other side of the Continental Divide (The Rockies). So far mild temps here.
kathec, I will pray that that lump is nothing to worry about. But I do certainly understand your concern. I love what you said to Lily. Make those scars something beautiful a piece of art! I'm actually starting to think I may get a tattoo over mine. The only thing is I have to be very careful because of the diabetes. Sure don't need an infection from that!
LOL Jazzy!! Now that is just too funny!
Yes, Spookie please do protect that sweet Kris from such a fate!!
Hugs
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No i think the oncologist i have reviews with understands my reasons, but he was the one who yelled at me that i HAVE to have strong rads because of that as I was ready to walk out one day at the way I was being treated ( no privacy), no humanity, some staff did not even speak just barked at me.
I have multiple drug allergies / sensitivies / intolerances including all anti sickness medications, anti histamines, and only have one (slightly under functioning due to previous interventions on it) kidney and these plus my intuition assessed over weeks of contemplation and research made me decide against, esp as it was lobular and fully hormone positive
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Lily I certainly respect any choice u make for u'r treatment and u'r respect for u'r privacy. I don't think I had any of that, only because it just never bothered me, I knew from the beginning I was going to be felt, needled and looked at so I just thought oh well. But being so disrespected by their use of words and actions is appalling to me, even tho maybe u should rethink some of these treatments since u are + and it sounds like rads are very important. Of course it's all u'r decision, but having chemo and rads is pretty common for the stage u are and while having chemo there is no seeing of anything, OK rads yes, Please rethink all of this and even tho u have sensitivities to a lot of meds there are others, I had 2 yrs of chemo, no fun but I did it and a month of daily rads, which I understand are different now and during that time I did meet many people whom we all talked about our cancers and it helped. Of course we will respect what u do. I went every week for chemo and we just had lot of fun and no one was feeling good but we made it good.
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Dutchiris- I am sorry about your back pain and hoping your scan does not indicate anything related to the BC. You will find out what is going on though, and maybe something else they can help you with. Share with us anything you wish and we will hold you here in our circle through this next apt.
Lily- we all make decisions based on what we know we can handle. The medical system will prescribe what they think is necessary, but I am well aware they also do what will cover their butts as well. They try not to under treat or over treat due to the liability issues. You know your body and what you were able to handle around this. Decisions were made and now you are working to move forward from all this.
I had some negative feedback during my treatment process, including with my sister who was also going through cancer. My doctors recommended internal radiation for me which is a growing type of treatment, but not all that common yet. When I told my doctor sister about it, she got on my case that it was not the "standard of care" and even discussed it with her oncologist in CA even though I asked her not too. A friend of hers who lives here and is also a doctor (and who helped me through my surgeries last year) sat with me and my docs, and heard all the reasons why this treatment was right for me. My sisters friend said "if I had early breast cancer like you, I would do this." So I did it and have no regrets. I told my doctor sister to mind her own business and pay attention to her own treatment! Because I have a family member who is a doctor, I just sort of know a lot about the way they think and react. But int he end, it is our cancer, our bodies, our lives and our decisions.
Changes to the body with all this are very hard to deal with. You just keep taking it one day at a time and continue asking for the help you need around this.
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I did have Rads but felt bullied in to it , I dont regret my decision about chemo, I know it was right for me
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lily55, i wish i had been as strong as you, and not done chemo, cuse of the havoc it has wreaked on me, and just done the ai's, cuase in my case we dont know how helpful the chemo actually is, but i am having a really hard time staying on the daily pill, cause it hurts! but believe me, i am not criticising your choices, i just want everything to turn out ok with you.
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THanks Kathec, its so easy to have regrest but we all do the best we can at the time, I wish I had refused Rads too......as they caused me ongoing problems and are partly responsible for problems i had with last surgery.....
I had horrible side effects on Femara (letrozole) but moved to Exemestane and do feel a lot better on that by comparison. I had a two month break in between as advised by doctor in London and felt great about 6 weeks in to that!
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kathec, thanks for sharing the food recommendations from your endocrinologist. I like Greek yogurt too. I have never heard of keffir or cholecalciferol but will investigate them. I wish I were better about eating leafy greens.
Jazzy, that fire hydrant pic brought more than a giggle. Great fun!
Cami, I laughed out loud at myself when I applied Aquaphor last night. I remembered telling you that it looked like pure aloe. WELLLLL ... in the jar it had slid to one side and looked like aloe ... BUTTTTT, as you know it sure does not feel like real aloe. I got another laugh about an hour after I applied the thick ointment ... my body heat had warmed it causing it to turn runny. Since I must have applied way too much, I had to mop up.
Dutchiris (((hugs))) ... thinking of you.
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Lily55, I am so sorry that you are facing both BC and a hostile medical situation. I think of you often as I meet with my various techs and doctors and wonder why your medical team chooses not to be kind and respectful and good listeners. Wouldn't their lives be happier if they were nicer? Are the medical personnel in Spain angry at their working conditions? Even if they are, they should not be taking it out on patients. Is there an agency that takes complaints or that can act as an advocate for you?
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Thanks for all your ideas, I did complain to the hospital and about specific doctors, and about my treatment, original mis diagnosis etc etc......but they just do not get it re body image or sensitivity.......the only positive from my recent stay in the same hospital is that all the staff including those I met before, seemed to have been on a patient niceness / awareness course as in the past they would yell at me (literally "what am I supposed to do with those veins") yet now they said oh they are difficult lets do our best sorry if we hurt you, and they didn´t hurt me!!! And they were all as kind as possible given the shortcomings of a spanish public hospital........and we are in a more deprived area funding wise
Sadly i cannot get care in France and could never afford the USA...........my options are public or private here in Spain, other countries are too expensive for private care.....and language is an issue there too
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