MIDDLE-AGED WOMEN 40-60ish
Comments
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I know of the studies about positivity and better resulting outcome, but remain skeptical (anyone surprised?) because I wonder if the result is the chicken or the egg? Perhaps the persons that are able to be more positive are getting an unconscious type of biofeedback from their ailing bodies that recovery is more possible (regardless what prognosis the docs give.) Maybe the ones who aren't very positive are just not feeling it. But like I said, it would be complex biofeedback communication, not something a machine could measure or something that the person even had an awareness of.
My final thought is that, while I am not fully convinced that positivite attitude really causes positive outcomes; I still say being positive doesn't hurt either.
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eli - that's an interesting thought, that the more positive people may be getting good biofeedback... I hope it's true! I am largely a guardedly positive person. I tend to "prepare for the worst, while expecting and hoping for the best." I don't go around blowing sunshine, but I don't think wallowing in gloom is healthy either. I try to eat right and exercise, and I think that helps my attitude, whereas if I were "Gloomy Gertrude" expecting the worst I suspect I'd lay around and eat and feel and fare worse for having done so. I try to acknowledge my feelings, like "I am really pissed about the LE" but I do try to keep things in proportion, "It's certainly not a bad as it could be...a nuisance, sure, but not a tragedy."
When they said "cancer" back in Feb of last year I did spend a few days in a tailspin, but I've been working to stay sane and in control since then because I can't be any other way. But I was lucky. (afik) The cancer, while large and multifocal shows no sign of having escaped my breast and after the delays in dx and treatment I will count that as a hugely lucky break, while trying not to dwell on the hideous bad luck of getting cancer at all.
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Strangely enough, each one of my cancers could have begun its growth roughly at the time when I lost a perent. Did my profound sadness cause the cancer to begin growing? Wouldn't that be bizarre? In my next life, I will just have to have immortal parents then.
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JoC1951-
I'm sending virtual hugs along with positive vibes along with all of our sisters. We will try to remain positive for you through this, and then when, and if you feel like it, you can too. But we certainly understand if you don't feel it, especially right now as you face your fears from your latest diagnosis.I am curious about how a 6+ cm tumor was missed back in September? Or did it grow at an alarming rate? I am not one to focus on the past, but I think that your local paper might want to do a personal BC story featuring your experience. You could honestly reveal what your path has been and possibly inspire others to be more aware and even improve the medical response. I know the timing of this suggestion sucks, and that not all undergoing what you are right now would be "up" for something like this, but if you're like me, having a voice and being heard may go a long way to changing a lot of things, personally and socially.
Before having children, I was very protective about showing others my body and even sharing much of myself in many ways. The birth of my first daughter changed that, when the nurses lost her heartbeat, the doctor was still on the freeway, and they had me butt naked on all fours trying to improve things, with doors wide open for all to see. And since then, most recently with BC, when a PS newbie (who looked about 16) joined my PS to get a good look at me and view me getting marked up pre-surgery, not to mention all the different people doing my fills, etc. Now I'll strip for anyone (kidding)! I mention that because it is pretty amazing how "life" changes one's perspective. We all have bodies and experiences, some pretty, some not so much. I got so much gratification when I campaigned for a nipple and areola sparing mastectomy (not done in my local hospital before) and changed the nurses protocol to 50ccs for expander fills (had been 30 max for four years running, except that the PS could do whatever amount he and the patient wanted when he was injecting the saline). Seems like a small thing, but nurses were thanking me and my BS told me after surgery that several patients are now asking for NSMs (because the nurses are telling them about it).
I hope I don't sound like I'm tooting my own horn; I shared this because it gave me a lot of pride to know that my experience is possibly helping others improve theirs.
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Eli-
Just got to say, thank GOD the headdresses shown in your picture of middle age women are no longer in vogue. Although I guess you could hide a lot of goodies in there!
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JoCanuck--it is very normal to be pissed, angry, scared, sad, and generally negative when newly diagnosed with the beast. No worries about expressing any of that, we've been there and understand. And we still go through those negative feelings, too, from time to time even years later. So participate all you want, say whatever you want or need to say, it's safe here. OMG, I just read your update. You were so FAILED by the medical system. Has any one of them had the common decency to offer you an apology? Or any acknowledgement of how you have been screwed over? And you aren't depressing me, any way, I am so, so very angry for you! Give me the name and addresses of your docs and I will file complaints for you. This was malpractice. Someone should pay, dearly, for what's been done to you and how you've been treated.
While I try not to wallow in negativeness, I really resent being told that I am wrong when I feel anger or sadness about losing 3 years of my life to ongoing pain, multiple surgeries, the total destruction of my credit rating and everything else I went through. I know that's not how I'm supposed to have breast cancer. Tough $Hi!!. Who is anyone to tell ME how to have any condition or disease??? Ahhh, I really didn't mean to get back up on that soap box again.
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They found that it was not being positive that improved outcome but authentic expression of emotion, so that it was free flowing of all emotion that made a difference - I think it is a biofeedback type thing as it means there is no emotional stress or repressed feelings adding to systemic stress - interestingly absolutely EVERYONE I have been in touch with who has cancer had a very stressful period in their lives for a few years before diagnosis, so stress reduction is also recommended for us.........
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I think I'll still in someone's pocket who hasn't posted results...or was that Sherry? You can move me into the next pocket when ready!
As for gaps between chemo, elimar, that's how it's normally done, so I can't see it hurting too much...they must have figured out that constant chemo is BETTER but any chemo would be a good thing, you'd think.
Dreams!! I am a VIVID dreamer. My blood pressure meds help that. I also am a night flyer. I am SO blessed with all this! As i go to sleep at night I am actually excited to see what I'm going to dream!! My dreams are vivid enough that I touch and feel, smell, taste and do it all..and I mean all!!! I will have at least one vivid dream a night and sometimes two. I remember them very well. Sometimes I shop in my sleep too which is very cool. I also create art which is also very cool! I'm lucky for this as I spend so much time in bed on my back and can drift in and out of sleep quickly and well. I read every night but don't tend to dream about what I read. I do dream about work (still!) which is understandable. The sex is always amazing, too. Sometimes I have breasts and sometimes I don't. I also dream deeply plotted dreams and know if I wrote them down they'd be interesting to others. So I can talk dreams all night long! hehehehehe
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Jo good luck with your treatments. Vent all you want here, I'd be pissed if I were you.
Had my MO appt and my zometa treatment yesterday. I finally got to move to 6 month appts, woohoo!!! He will follow up on my pancreas levels in a month and thinks I may be able to get off the meds if I behave. He thinks my reconstruction looks great. I laugh because he is such a nerd but I love him for a MO.
I also asked my MO about the 10 year tamoxifen study. That has been a hot topic since the San Antonio Breast Symposium in December. He said that it has not been published in the medical journal yet. He said it is finished and was presented in San Antonio but only bits and pieces are coming out. It takes 1-2 years for it to be published with all the details. He thinks it is a great drug with Lot's of added benefits if it can be tolerated. He said for years he has treated young pre menopausal node positive women with 10 years of tamox. He has always felt it gave added benefit to the really young. He would not commit to what he will want for me when my 5 years is up but will probably want an additional 5 years of something. Depending on this study he will decided on tamox or AI but as he said that is three years from now and research changes everyday. He is always full of information just wanted to share with you ladies.
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I'm in for the pocket party Jo 😜
On the topic of positive attitude I go with the 'just don't hold it in' group. For me, I've pretty much always been a glass half full girl, so when I was going through treatment, I just tried to keep my head in as good a place as possible because that was how I always did things. If I had a crappy day though, I let everyone around me know that too!
Helping daughter today with baby and dog while her hub is away. Twist my arm
Right now she is napping and baby is making adorable sounds in his sleep. I am grateful for this moment in time. My wish is for all reading this to have one moment in their day that feels good. If you get two, that's a bonus!0 -
I always try to find an "Oh God!" moment in my day. It could be a sunset, a funny line in a book, a craft that worked out or something like that. If I don't find one, I'll go looking! There's a lot of Oh God moments out there!!!
I, too, don't hide my emotions...qu'elle surpris!! I get angry fast, but then it's over. I don't hold crap in anymore, better out than in! Like gas....
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I was 2 months pfc yesterday. I had my hair trimmed as it was like wire on the ends. The new hair is much softer and it looks fuller now that the ends are gone. I am not used to short hair, but at least it is growing. It's about an inch long now.
I will be done rads soon. I have 7 left. I am having what feels like panic attacks as the end of treatments grows closer. I was trying to think about why and I think it is because while in some sort of treatment I feel like I am doing something to fight and when it is over I feel like at time bomb just waiting to go off again. Has anyone else felt like this and any suggestions to get past this?
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Dianarose ~ I have the same feeling. I just finished my 3rd round of chemo with one more to go and discussed it with my MO and the chemo nurse. I even asked if we should do a couple of more rounds of chemo.
I won't be doing rads, so after my last round of chemo, it will just be Tamoxifen, but I still fear that won't be enough.Cindyl ~ thanks for the link.
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Thanks Cindy.
I got comfortable after my first round and had past the 5 yr mark. Then diagnosed again over 7 yrs later. I don't know if I will ever be able to get to that spot again.
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Welcome, maryah930! If your ER+/PR+ was a high percentage, then five years of Tamox. can do plenty. Even ladies that are Stage IV sometimes are on Tamox. as their sole maintenance drug for a time and the cancer is controlled well by it. For you, and us lower stage ladies, it is kind of an insurance policy. We don't really know if it IS doing something, but the drug has a pretty good track record for keeping the recurrences away. If you feel you should, and want, to do more, then have a look into the many complimentary & alternative things out there. You can probably find a lifestyle change or two that may lower your risk, some of basic ones being to drop some pounds if you have extra, get in 30 min. of exercise daily if possible, re-evaluate your drinking and smoking habits (if you have those,) etc. The spectrum is really wide open on how much is enough.
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Posting as I read.
Diana... I soooo remember getting to the end of rads and panicking. I wanted to keep going, or start another chemo -anything! And then it passed, once I really got to the last one and thought "okay, this is when I rest and let all that stuff percolate and work" In my case I had tamoxifen after that, but I enjoyed the break. You've done it hon, enjoy the break0 -
Ok..just read Diana's next post, forgot it was your second go round hon. It sucks, for sure, but you still have control. Please do NOT let this change your hopes and dreams. None of us have a clue what tomorrow will bring. I used to have a saying as my tag line along the lines of 'worry doesn't empty tomorrow of its problems, it robs today of its joys' Hugs
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Marlegal, your tag line is so true.
Hugs, Cheryl
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JoC - good luck today! Don't worry if you hear some strange noises and odd movements in your pockets. It's just us girls hanging out with you to provide you some encouragement and support.
((hugs))
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JoC I will be in your pocket today.. (((hugs)))
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Marlegal, your new tag line actually makes me cry. I remember when I first read it and it really hit home for some reason. Really put compassion into the equation.
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I am still a few pages back, but wanted to pop in with a hug for you, Eli~.
I have found error on my med records as well. Like having it written that the US on my left breast being unremarkable. Maybe so, because I had a mammo, and it was on my right side. Also I liked the comment from my RO who stated that my port location was noted and healing...never had a port, and I examined my frontal view to see if there was anything there even resembling a port scar. Hmmm, maybe I just hadn't done a thorough job washing up that morning...strawberry jelly spill maybe? The trick is to read your records, remember the errors and make sure when you see a new dr. with your records, you make know the errors so they aren't taking that bad info into consideration.
Eph, loved the video. I agree, ELi~ you will kick cancer's butt, and look stylish doing it!
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JoC's pocket is going to get nice and sticky this morning because (now that I can eat most regular foods again) I was craving some cinnamon rolls. Haven't actually gotten one yet IRL so this is the next best thing. Mmmmmm! They even look warm.
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Only one more page to catch up on...
I saw a segment on a news program about the cold caps. The patient in that segment bought her own, and there were several of them, and she did have to wear them during infusion. They had to be changed every so oftern so the head could remain at a certain temp. Looked painful and costly. The patient had so far kept her hair, but what if it didn't work, I would be sorry I spent the $ as insurance will not cover it. I really hope they work for you, Amrdbit. Please keep us up to date on how you uses them.
Sherry, congrats on the clear scans.
I never had a port and had all of my AC-T tx through veins. I would never recommend that to anyone. It was never offered to me, and I didn't even know about BCO and hadn't been exposed to information about them. I wish I had. Luckily they gave me a Benedryl cocktail each time which helped me to sleep through a good portion of it.
In your pocket today, Jo.
Staynsane, I agree with you, having a baby takes most of your modesty away. After a double episiotomy, I had half the hospital staff stop by and want to see "it". Strange since until that time, I had never exposed myself to a male other than my husband. Then came BC, It is almost like you disassociate from your breasts/body. It seems as if every dr. appointment requires you to remove your blouse, and since there are so many people in your medical world, they no longer become a sexual part of you. It does get better over the years. I realized that at an onc appt. last year when the NP brought in a male student to examine me, I was a bit taken back, and not relaxed about it anymore.
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And...caught up! It's hard to just jump back in where the thread is at. I usually put my foot in my mouth when I do because I don't know all the details in someone's situation. So, I try to make sure I catch up.
I'm with you all who are going through tests and tx.
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Who are all those normal looking people at the top of the page? I don't think I made that shot!
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Eph3 12-
Eli can correct me if I'm wrong, but the women in the above shot all just had a successful BM after consuming several cinnamon rolls provided by Eli. Eli, I LOVE a good cinnamon roll, but prefer chopped, toasted pecans on top. Of course, I understand why nuts were left off of yours...so happy to read that things are getting better!
Thinking of you, Jo C...
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from the best baker in Copenhagen:
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I am going to the State level on Wednesday for the blueberry pie contest. I will make an extra one for Jo's pocket. Between that and the cinnamon rolls we better bring some wipes because you know we will make a mess.
I treated myself to some silk pj's today. They feel so much better on my burnt skin. Wish I could wear them to work.
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