Stage 2 Sisters Club
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For those of you on Facebook:
I have created a facebook page - IDCFacebookFriends. I have found that these boards are great for information and support, but it seems hard to REALLY get to know the others here. I think becoming facebook friends in this way will allow us to more easily share happenings in our lives (not necessarily breast cancer related) and get to know each other on a deeper level. I would so love to know more of you on a (real) and personal level Do you have kids? grandkids? hobbies? etc. Let's share them on this new facebook page (and pictures too!) I have found that many of my friends and family see the end of active treatment as the end of cancer. (True in many respects, but as we who have been through it knows, it stays with us in some way for the rest of our lives).
Log in to your facebook and look it up. It is brand new so there won't be many at first, but let's see how it goes. If it is hard to find, enter the e-mail address in the search bar.
IDCFacebookFriends@gmail.com
A place where those affected by the breast cancer diagnosis can be a part of a community who understands. A place where friends are made. A community of people who "get it," who can offer support, encouragement and help to each other. Spread the word!
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Johnetta. - What a friendly idea, thank you. Not sure anything changed since yesterday but I tried to find the page both ways you recommended, and failed. Then I had to go to a day party and forgot to let you know.
I am surprised not to find responses from others. I wonder if it is because it is the weekend or related to what I experienced yesterday. My first gut response was one of wondering what degree of intimacy I want with my BC-friends and if I have the energy to keep up with a new commitment. I concluded. I would like to try, and thank you for reaching out.
While I agree it would be lovely to get to know each other at a deeper level, there is a t least one concern in my heart. I don't mind the anonymity of forums but I love the equality they provide. I am reminded of an experience with a book club. At first the meetings were at a restaurant. It was great. What united us was our love for books. Later, inspired by the desire for more intimacy, it was moved to people's home. It was supposed to be "something easy and informal" but slowly became a competition of china and gourmet skills. The club ended due to attrition. That experience remains with me years later!
I wanted to be open about my mild reservation and open the door for a discussion if others feel ambivalence about this option. In the meantime, please send a link to the page if possible.
Love to all, Nisa
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I think, at first, it is easy to get sort of lost on BCO. If you stick around awhile and find threads of women with the same interests, that is when you can start making friendship connections. I am an exercise gal, and check in on my exercise thread almost every day, as do quite a few of the other ladies.....from that daily contact about something that is important to us, have come real relationships. Different groups of us have met up, become Facebook friends etc. I think chemo/rads/specific stage etc. threads are all very good and helpful, friends traveling the same road. But friends of the heart come with something more in common; whether that be religion, crafting, exercise, the humor threads, weight loss, whatever.
Nisa, I have been in a book club for over 15 years, and we have always met at each other's homes. Happily, I have not had your experience! Probably because we are all too busy (and/or lazy) to fuss. We eat lots of pies from Perkins, and sometimes the hostess for the month will say, "Screw it. I don't want to shovel a path through my living room at all. Let's meet at a restaurant and I'll pay."
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mjsgumbas, sounds great! I have to admit that worrying can get the better of me sometimes, but at other times...I'm happier than I've been in years since I'm really enjoying the moments as they happen. This has been a real roller coaster for me, and i'm not even done with chemo yet!
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Hi Johnetta: thank you for having the idea of creating a Facebook page. I tried to access but had no luck??? At least for me, I think this is a good idea. I don't belong to any support groups in my city because they are either far away or meet during the day which tells me that the are comprised of people who are able to go to afternoon meetings. That is not me. I am still working, I am 41, I have 2 children and love this board because I can connect with others with similar diagnosis onset, stage, etc. For my own recovery, I plan to stay connected to this board and would appreciate growing in my relationships with others who are going through BC. Prior to my own diagnosis, I only knew of one person with BC who ultimately died. I need to know others with BC who have survived....for my own mental health. This board has been great for that. Thank you to all those who continue to post beyond active treatment. I will check the new Facebook page in the upcoming days, maybe it will work at that time. Blessings to you all
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Warrior70,
Hello, my wife was diagnosed in April very similar to yours. She completed her treatments and Rads and is feeling well. We are happy for each day that comes and we enjoy each other more than ever! Today is her first day back to work. Life is returning to normal as her and I define it now. Wishing you the best!
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Thank you, JDB53!
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Hi All, hope those of you in the Midwest are keeping warm!
Today I was asked the disturbing question of what I was doing about keeping my estrogen levels down from a nutritional viewpoint. I answered along the lines of one glass of red wine a week, little sushi, power walking and maintaining a healthy weight. I was told that is not enough. That sent me researching the anti-estrogen diet on a few reputable websites. I wrote a list of estrogen-enhancing foods in my phone and soon realized it would be a challenge to avoid all sweets, carbs, avocados, non-organic meats, soy, pinto and lima beans, flax seeds, tofu, miso, carrots, apples, tomatoes, alfalfa, cherries, rice, yams, olives, melons, oranges, grapes, cucumbers eggplant, etc. I was left wondering how in the world could some/most of those things be so bad for me?!
If you are estrogen + I would love to hear what changes you made in your diet, if any. I don't want to have to check my phone every time I eat.
Thanks, Nisa
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Oh for goodness sake, what dork asked you that question? Seriously, if you can never eat or drink anything fun, then why even be alive?!!! This is what I do: I rarely drink (and when I do, not more than 1 or 2 drinks), I do exercise a lot.....for overall health as much as for reducing estrogen, I keep my weight in the healthy range, I don't add extra soy or flax to my diet (although I don't run out of the room screaming if served something with either as an ingredient), I try to eat more fruit/veggies and less processed food/sweets etc. (I am generally pretty bad in this area), I eat more fish/chicken and less red meat (although I very much enjoy an occasional steak!). IMO, common sense and moderation are the keys.
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Well said, Ruth......as she bakes sweet potatoes, sips on wine, and has her steak ready to go. I think the key is to start with primary ingredients. Trust me, I wasn't exactly doing "eating healthy" for my Mount Rainier ski two days ago.
I didn't undergo all this treatment to eat green slime for the rest of my life either.
I have baked apples for dessert. I baked them in some turbinado sugar and brandy. I have cream to go on top.
As Auntie Mame said....life is a banquet and most poor bastards are starving to death. I am going with the banquet.
And I am thankful for every day. - Claire
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I was under the impression that taking Arimidex, Femara, or the other types of estrogen blockers would help with that problem. Our oncologist told us that taking the pill is equally or even more important than the chemo or rads for prevention of it coming back. We do know that avoiding alcohol and sweets are very important as well. Our primary doctor feels very strongly about eating properly and he feels that additives in foods have caused problems with cancers in our generation. But like Ruth and Claire said, moderation is the key. We really try to watch our diets and try to eat organic foods when possible. My wife is on the green drink kick using her Nutrabullet. Kale, apple or pear, blueberries etc. Once a day in the morning. And exercise is very important too! But dont deny yourself a piece of red velvet cake once in a while! Oh and Nisa its 2 degrees here in Jersey as well but at least no snow.
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Sorry slow response. So busy now back at work. I agree that moderation seems like a good strategy for overall heathy living, although we will never know if what we do actually impacts anything related to cancer. Progression does not mean you did something wrong. Lack of recurrence does not mean you did something right. So many unknowns! Funny that some food and herb items are both on list of things to avoid and on list of items to embrace. Imagine turmeric or garlic being bad for you? Really?
Ruth - cute new photo. Jeff - keep warm! Claire - love your riding!
Love to all, Nisa
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My doctor told me to avoid red meats, and pointed out that pork was indeed a red meat, just like beef, as was lamb. So I do not eat any of those. She also advised me to avoid any chicken or dairy with hormones in them, as I usually only buy organic dairy and chicken and have done so for years, that was easy to comply with. I try to only eat wild caught fish and shrimp as I know that what is fed to farmed marine life is considered to be unhealthy for us as end users
Now, when it came to sugar and sweets, … that was harder. I switched to honey in my tea as it is more slowly processed by our bodies than sugar. I have cut back on cookies, and baked goods, but lately have guiltily binged as so many are in the house from the holidays. I need to do better. Sigh.
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A great substitute for honey is raw agave nectar. It has a low glycemic index and doesn't cause a spike in your blood sugar levels.
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I tried agave for a while, but wasn't completely happy with its taste. What really put me off of it was that every brand I found was in plastic containers, not glass. I am convinced that chemicals move from plastic into the foods they hold, especially those packed hot, so have been trying to avoid plastic containers. Honey still can be readily found in glass containers, so I switched back to using honey.
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Hortense, I never noticed the plastic storage thing...good point. I HAVE become a huge convert to agave, though, it is really great on Greek yogurt and on unsweetened breakfast cereal. I for one am just starting to get more paranoid about everything I've been eating lately...of course, the holidays/my birthday have allowed me many opportunities for indulgence, and only being able to eat cooked veggies/ raw fruits and veggies with thick skins during chemo really limits your choices....I am really looking forward to SALAD!
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I am going to try agave as I too use honey in my tea. Every time I see Hortense's posts, I can't help feeling sorry I did not know about the system that saves hair from Taxotere. I miss my hair so much! It is coming in dark and so different. Still in my wig 3 months post chemo.
Happy birthday Warrior! You still in chemo? How many rounds left? I was told to stay away from raw veggies during the week when white cell count was low, not the entire cycle. My best to you.
Love, Nisa
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NisaVilla - Thanks, I did have a great vacation. Too bad it's a distant memory now. Haha. I want another one.
Since I went alternative, I made a lot of dietary changes which is hard and really sucks. I miss bread and cheese. I do feel 1000x better though, so I won't go back.
I avoid soy and am gluten free. I eat organic whenever possible. Based on all my trips to Whole Foods, you all should buy stock.
I eat organic, hormone-free meat. I still eat red meat and refuse to give up my lamb and prime rib. I've been substituting sugar with coconut palm nectar/sugar, Xylitol, stevia, etc. I cheat with sugar and alcohol on vacations because life is short. Well, "the days are long, but the years are short." 0 -
Thanks, NisaVilla. I have 3 weekly taxols left...2.5 weeks. Can't wait!
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Warrior - 3 taxols left. Are you doing ok with SE? Can you work or need to be home. Wishing that the next 2 weeks fly by!
GGG - Oh dear. What do you eat? I could do without meat and sweets but please don't take bread and cheese from me. Funny is, we may be torturning ourselves for no good reason. All these cut-this and cut-that are not recommendations based on solid and unequivocal research.
Love, Nisa
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Nisa, I now have 2 Taxols left (woohoo!) Side effects have been truly minimal, and I hope they stay that way! I am working part time in my classroom with my co teacher and will go back full time in February.
As for dietary, I am definitely eating red meat during chemo, for iron and because I am 5'5" and 105 pounds and I need the concentrated protein/calories that it has. Once I am through chemo, I will be doing more vegetarian days. We are all-organic now and I do not use products with paragons, phthalates, and aluminum. I also do not, whenever possible, drink coffee brewed in a plastic pot or cook anything in a plastic container. I limit myself to 2 alcoholic drinks a week, also.
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NisaVilla - The bread and cheese was the hardest. I do find that cutting out the wheat and dairy has helped with my eczema and asthma. Sugar does feed cancer cells so I definitely put the brakes on it. I put my foot on the gas when I'm on vacation though. Haha.
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I meant in my last post: PARABENS, not paragons. I am certainly no paragon; anyone who knows me will tell you that!
12 days to go to the last Taxol....
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hello, just wanted to stop by and say hi!
Now on Tamoxifen and back at work! Very tired, though...
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Headeast - HI!! you are done with chemo and back at work! Wow, so much happened in so little time. Is removal of TEs next for you? Wish you all the best.
Warrior - You are so close to the end of active treatment too. Seems like the 2013 BC generation is moving on. I wish there were no more BC sisters coming behind us but I know better.
GGG - when you cheat with sugar, remeber that I am cheating with bread and cheese, haha!
Love, Nisa
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Nisa - dearest Nisa, yes, a lot has happened in the past weeks. I wanted to go back to work. I just didn't know how tired I would feel. Might be leftovers from the chemo treatment or the Tamoxifen.
I started a diet as well. No sugars, no carbs, no dairies. Trying to go to my regular weight. I gained 30 lbs since diagnosis. I lost 7 lbs in the past weeks.
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Headeast, how was it going back,to,work? I still have 8 more weeks to go but I am anxious about how my new normal will be. I hope,I am up,to it emotionally and physically. I still have rads and tamoxifen and I will be tired.
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Nisa, yes, so glad the BC class of 2013 is moving on! Not so glad that there will be many who will follow us, and no cure, yet. But soldier on we will!
As for going back to work, I'm on disability but I find myself back at my school at lot these days. Just being around friends and enjoying the energy of my students is life-affirming, and I thrive on it. If you like your jobs, I think you will all find that going back to work will do a lot to help you regain a sense of normal in your life.
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NisaVilla - I am jealous of who you're cheating with. ;-)
warrior70 - You are so right on about the job. It did give me normalcy after my surgery. Of course, it was after the, "Are you OK," and "You look great" comments. And sooner rather than later it's back to piling work in my inbox.
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smlvr, warrior70 and globalgirlygirl, going back to work for me was a must. I got a few negative comments from my boss that I didn't expect, but if there is something I have learned during this chapter of my life is to understand that people change and not to care too much about it.
Other than that, work is filled with projects and due dates that will keep my mind away from worries like C that i can't do anything about it. Being sorry, I am busy is also helping with my diet. I have lost 7lbs, still 23 to go, or at least 18 to feel I fit alright in my old clothes!
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