2013 Survivors!!!
Comments
-
Embok- welcome! I think we all have our days when we can "deal" with everything weve gone through. Yesterday was my day, I could not handle it. Had a patient that asked me about my LE sleeve and tell me I should have gone with a lumpectomy and that's all it took for me to have a bad day. I think if I were to go to a Psychologist they would say I'm clinically depressed. I have my good days and I have my bad days. It does get better.
Mrscich- glad to hear from you! Yay you on getting a tummy tuck! I need a tummy, ass and thigh tuck ha. Hope you are feeling well and have lots of fun on your getaway.
Scottie- good luck today I'm jumping in your pocket too me and my big knockers!0 -
Hi folks!
Hope all is well. Welcome to Shianne and anyone I may have missed.
I don't know how many of you you use Twitter with any regularity (I didn't until I started the blog), but there is an amazing virtual community called BCSM: Breast Cancer Social Media. It is a fabulous gathering of physicians, survivors of all stripes (past, current, mets). Through #bcsm (the hashtag used to conglomerate tweets on Twitter) I have developed an unbelievable virtual support network that augments this wonderful board.
Every Monday evening #bcsm hosts a Tweetchat (9 pm EST; 6 pm PST) that pulls together people from virtually all over the world. There is a different topic each week. It can be a wild ride if you've never exprrienced a Tweetchat before, but after the first round you adjust quickly.
If you would like to join in, just go to Tweetchat and enter the hashtag #bcsm. It's really quite fabulous.
Scorchy
0 -
Morning ladies. Hope everyone is well. Just checking in. 3 month oncologist follow up tomorrow and I am a wreck. First followup since last tx and don't know what to expect. Think I am going to need some Xanax in the am.
Hope everyone has a great day :-)0 -
scottie - in your pockets today.
embok - welcome; sorry you're here - but stick around for some real love and understanding.
I was just chatting with a colleague who went through his own cancer battles and he said something that I thought was good advice for all of us. He said I've earned a few years of respite from these kinds of life events, 30 or 40 would be good. But - he said - one at a time, then 5 at a time; crawling then walking. Got me thinking. We want to run to "mental recovery" but i guess it does start as a crawl. Cliche but true - one day at a time. I try to remember to just be happy every morning that I've woken up and I get to hug my kids and husband...
Hugs to all. Have a great day and go find your happy beautiful ladies!
0 -
Good morning
Welcome Shianne and Embok
Embok - I think that when we are in the active treatment part we just keep doing what we need to do to get through. Once it's over our mind needs time to process it all and that's where the emotions come in. Our bodies are not back to normal yet either and the combination of working through what you've been through, the physical rebuilding and the side effects of our hormone therapy all work together to make for extreme fatigue. If you can, share with your husband what you are feeling and going through so he can support you through it. If not, continue to share here with us, we get it.
The book that Juneau put a picture of in the top of the thread has been helpful for me. I was also reading a blog last evening by a woman who had mets and was now going to have chemo that caused hair loss - her husband's comment was that now people would take her condition seriously, when she had hair the comments were always minimalizing the BC and emphasizing how good she looked (therefore the implication that she must be doing fine and should be able to carry on as normal)
Scorchy - I continue to enjoy your blog. Looks like I will need to sign up for twitter, thanks for the info re: #bcsm
Scottie - in your pockets today. Hope you can advocate for yourself with the doctor and with the friend, sounds like you are feeling unheard by both of them
MsCich - tamoxifen seems to need to be played with to see how best to make it work for your life. I switched from morning to night and now back to morning again. I have some low grade nausea at times with it, I have just started getting some spots on both cheeks that I am told are a result of taking it, I am very stiff when I first start moving after a period of not moving and the hot flashes are definitely increased since taking it.
To everyone, wishing you a good day0 -
Melissa119 - in your pockets tomorrow
Ramols - like what you said
0 -
Welcome Shianne and Embok!
Happy Belated birthday Marianelizabeth!
MrsCich the tamoxifen causes me to not sleep well at night and of course the hot flashes I have are more often than they were before. But like someone else said and I forgot who but I find that I am more achey when I've been sitting for a while as well. It seems like almost every joint in my body aches more than it used to and maybe that's just arthritis I dunno, but some days I feel like I'm ten years older than I am.
Scottiee maybe your friend just doesn't like to talk about anything negative and would rather turn the converstation around to something more positive. Because seeing things in a negative light might make her think of losing you and she doesn't want to think of that either. I'm guessing here. I have a co worker who does the same thing. If I say anything negative she tries to turn it around to something positive. I can't vent to her at all because of this. But I know it's because she cares about me more than it's because she doesn't want to listen to me. It's annoying, but I know it comes from a good place.
Hope everyone is having a wonderful Tuesday so far!
0 -
Embrook as its been said everything your feeling goes with this BC beast. I was dx June 24, started neo-chemo Sept 4, surgery Jan 12 and I start rads Feb 26. It's been a long 8 months and yet at the same time it has gone by in a flash. I feel like I'm breathless from all the appointments, scans, X-rays, mammos, MRI, seen one new dr after another, being poked, prodded, stabbed, cut, drained, refilled, rolled over and stepped on (ok its not all that bad but at times it seemed so lmao) I'm still exhausted too, it's the new normal. Our bodies are still healing. Even though your surgery and experience may not have been as involved as some others does not mean it was any less traumatic to you or your body! Physical and emotion stress takes time, more or less for every individual. I also believe some of it has to do with the brave face we so often put on.... Acting is hard work!!!
I know I'm still exhausted to. I just said to my DH yesterday that "I'm tired of being tired"
There are so many factors that contribute to our fatigue, I was given Zopiclone for sleep from my MO and told to use them at will. Any dependency will be sorted out later. Right now sleep is the most important healing factor. I was also given 37.5 mg of Effexor for the hot flashes, it hasn't eliminated them but I've gone from what seemed like 50-60 a day to maybe 5. And the night sweats are gone too. I'm 43 and was thrown into immediate chemopause as well. I'm fortunate that I don't work outside the house but I have a very active family so on the upside I can rest when needed but due to sporting events, school activities, and the many other functions everyone seems to think I have time and energy for I always seem to be running on empty!!
I guess what I'm saying is its common and you're never alone, I found just knowing that helped. This group of SuperWOmen have helped me so much just by hearing that these things are not unusual.
Good luck and stay strong {{gentle hugs}}0 -
In your pockets, Scottie. My Doctor went to the same school your went to, all business.
0 -
Websister and sonson... Did you have the aches and stiffness before the tamoxifen? I'm just wondering because I've noticed I'm like that the last couple days and I haven't started tamoxifen yet. (After rads) when I get up in the morning or after sitting and watching tv for a bit I walk like my 85 year old grandmother did when she was recovering from hip surgery!!!! Gives my DH and DS quite the giggle to watch me get going lol. I think they secretly place bets on how many steps it will take to actually walk upright, I hear a lot of snickers and whispers behind me!! Oh well, if we can't laugh at ourselves at least we know our family is ;-)
0 -
Websister; I read the thread to catch up and whenever you post right before me you say exactly what I was thinking... great minds.
Embok - EXACTLY what websister and Aruba said... treatment is a whirlwind. We put one foot in front of the other and keep moving. It sounds likeyou didn't really have the opportunity to share your fear with your DH either - being the breadwinner he must have had a lot of fear of you being out of commission... so I'm guessing you tried to stay "strong" and stoic. All I can say is that for your emotional healing, that's a bad idea. Scottie - this also applies to you and your friend. We need to TELL PEOPLE WHAT WE NEED FROM THEM. She's your BF, he's your DH. You should tell them that you know they want you to be ok, and from the outside it might look that way - but you need them to LISTEN to how you FEEL and stop TELLING YOU how you SHOULD FEEL. Scottie, If she is unable to do that, then perhaps you need to reevaluate the relationship. Remember - she is scared too. And I have found, through talking to my closest friends, that they feel impotent. They watch the person they love got through something they cannot understand... but fear happening to themselves. IF WE CAN GET SICK - THEN THEY CAN GET SICK. It is no longer something that happens to OTHER people. It has happened to someone in their circle.
Anyway, my suggestion is to sit them down adn ask them to try to LISTEN and HEAR HOW YOU FEEL and stop telling you how they WOULD LIKE YOU TO FEEL. Yes, we do have moments of gratitude that we are still on this side of the dirt (as my mom puts it); but our feeling don't follow our minds - we can't think our way into feeling "normal". Embok_ Get the book... It REALLY HELPS.Scottie; in your pocket. Melissa; in yours too.
Ramols; I love what you shared.
Mrscich; glad to see you here. Missed having you around. The tamoxifen hasn't really caused me any issues that I couldn't overcome and let's face it.. I didn't really have a choice about taking it, so whatever the SEs are we deal with them. The HOT FLASHES were UNBAREABLE. I now take Gabepentin (300 mg 3x/day) and have NO HOT FLASHES! It was my life saver... I wanted to shoot myself before that. Effexor, nothing worked. I take it in the morning and have no other noticiable side effects.
I exercise 6 days a week in some format. Either a class, or cardio. Like liefie I just want my strength and body back.
..and speaking of bodies... my Higher Power has such a great sense of humor. JUST WHEN I'M LOSING MY MIND and getting ready for lipo, I get on the scale following my FIRST PERIOD IN 6 MONTHS LAST WEEK, and I am down FOUR POINT THREE POUNDS! Yes, 4.3! WTF!!!! So maybe, JUST MAYBE I'll hold off on the lipo.... but we'll see... (liefie you were right...) I am still going to get my eye lids lifted though...
Out for fancy Fondue dinner tonight with mom and my Aunt to celebrate my birthday (which is tomorrow). Look out 45.... here I come!!!
xo ladies!!!
0 -
Scorchy - I found tweetchat and Bcsm. Not sure how to join in?
0 -
Juneaubugg, very well put about how our friends and family feel. In the beginning I felt abandoned by my circle I was angry and jealous. Angry that they weren't there and jealous that they could just go forward. I didn't understand that they were scared. I was strong because I had no choice, I had to just deal with it. Although, it hit close to home for them it was still on the other side of the door and they were to scared to open it. My close friends unfortunately aren't so close anymore but in their place I've discovered that the people I considered acquaintances are true angels and have become close friends.
Congrats on the weight loss!!! And HAPPY BIRTHDAY!!!!!0 -
Juneau,
Happy Birthday a bit early, wishing you the best of days and many, many more.
Congrats on the weight loss. I am really watching what I eat but the scale isn't moving. Since I am 9 years into menopause I think I will skip having a period even if it does result in weight loss LOL.
Take care, Sheryl
0 -
Shianne I didn't have any aches or stiffness before taking the tamo. The taxotere that I was on for chemo caused a great deal of muscle aches and it took about a month or more to get over that, but it's gone now. When I was at this stage I know I said to my DH that I was tired of being tired. My joints ache now. My knees, my hip, my fingers, almost everything aches now. And I can relate to the getting up and going. I hobble around for a few steps before I walk like a normal person.
Juneau happy early birthday! You should celebrate the hell out of it! I know I will whenever it comes around. And congrats on the weight loss. Of course it would happen just as you are contemplating lipo. It's the universe giving you something to go hmm about. And calories on your birthday...they don't count!
0 -
A little word on #bcsm again . . .
1. Here is a storify piece on the BCSM chat last night on creativity and cancer: http://storify.com/brianreid/bcsm-2-18-13-breathe-create-share-move
2. As for "signing on," you would go to Tweetchat and sign on through Twitter--you will be asked to authorize the app with your Twitter account. Then you choose the tag to follow: write "bcsm" in the box at the top of the page, then you will see a new page with all of the #bcsm tagged tweets. You can see these any time, but with the Tweetchat hour you have any number of folks tweeting from all over. the page is updated with one new tweet after another showing up in real time. I wrote a post about my first Tweetchat.
3. Twitter, if you haven't used it before, can be odd. I tried to use it years ago as a professional tool. Well, archivists are boring (there, I said it) and I didn't see the usefulness of it at all. Then Egypt erupted with the revolution and I began to see a usefulness in it. It wasn't until I started the blog that I went on to Twitter to promote readership and then began connecting with folks. I did a search for "Breastcancer" and followed one account after the other. Slowly a network began to develop and I found #bcsm.
For those of you who don't follow my blog, one night in December I had (what I have since learned) was a full blown panic attack. My oncologist, George Raptis, left Mount Sinai and I was assigned a new one. I looked forward to meeting her, but when I did I was shocked at her dismissive attitude, patronizing demeanor, and lack of interest, and expressions of annoyance. It took two days, but the following Saturday night I was watching TV and began crying uncontrollably for seemingly no reason. It just happened. I was sobbing and hyperventilating (running around my house looking for a fucking paper bag!). It went on for a good hour. I couldn't call anyone: I was sobbing and could not speak. But I could type, so I turned to Twitter. A call for help.
I forget what I wrote exactly, something in all caps telling the world (essentially) that I was losing it and I needed help. Let me tell you that I had connections I made in the UK and both American coasts that came to my aid. Just talking, pulling me together, centering me so I could pull it together. I could not have gotten through that night without those connections. A breast surgeon in LA, a physical therapist in Rhode Island, the partner of a patient in Liverpool, fellow knitters with breast cancer. It wasn't virtual--that shit was real.
If you want to explore Twitter, or you're already there, I'm @sarcasticboob.
Scorchy
0 -
Hi lovely ladies....check up was fine...as I said on the other thread, just tired of having
my boobs felt all the time and was wondering when the annual appts kick in???
Thank you gals for all being there today. 😘
About friendship.....this sounds so cold and not me but to be honest I don't care anymore!!!!! I have lost friends and family who mysteriously went MIA when I needed them the most... The friends I have left, including my BF I see from time to time on my terms now....I know, sounds so unfeeling and not me, but that's life. I have a wonderful
job with students who appreciate me and my family, and of course you lot.....lol. I am content....BC has taken away a lot of my confidence so I turn down many social events now and keep to my comfort zones...I am content.....My MIA friends and family made me so sad when I thought about them....broke me emotionally for awhile, but let them go
Because I need to take care of me now and being an emotional basket case is not good for my well being.....want to be around to dance at my sons' weddings and perhaps have the joy of holding a grandchild in my arms....I am content....love you all ❤❤❤0 -
Juneau, happy birthday to you, and many more to come! Yay on the weight loss too! See? It's a marathon, not a sprint. It is moving, and your efforts are paying off. An eyelid lift sounds really good to me. A little secret: My DH encouraged me to have one after my treatments were all finished last year. I was so haggard and fatiqued, and my lids were hanging over my eyes, making me look and feel so tired and old. Surgery was a breeze under local anaesthetic, and I'm very pleased with the results. You will be too!
About 'we can't think our way into feeling normal': No, we can't, but we can BEHAVE our way to 'normal'. It is a deliberate decision. If you purposely do normal things, start thinking of other things, planning your life, living normally again, bc will move out. In your mind the space that was taken by bc will be gradually filled with the more normal stuff of everyday living, and bc will be crowded out, so to speak. It becomes a past experience. You eventually talk and think about it less and less. It is over, and it needs to be laid to rest. We are changed by this experience, yes, but cannot allow it to define us for ever. If you purposely behave and live normally, the feelings of normalcy will eventually follow. I've applied this principle before in my life when there was trauma, and it works. Try it.
Scottiee, so glad your check up went okay!
0 -
Liefie, I hear you, but I still want one of these:
http://www.zazzle.com/chemo_brain_t_shirt-235575874406147576
How do you people post photos? Is there any way other than putting it on Facebook first?
0 -
Scottiee that's exactly how I feel. It's on my terms. As I told my DH in the beginning "it's going to be all about me for awhile"
Glad your check up was fine and I hear you about boobs being felt. I have a dentist appt Thursday, think he'll want a feel too?
I can't even post pics from Facebook.0 -
Juneau.....sorry, I meant to post about your weight loss...forgive me for being rapped up in the moment about moi!!!!!way to go.....that's how weight loss works....keep doing what you are doing .....and stay away from the scales for a bit.....physiologically the weight has to come off judging what you have been doing.......congrats 💃💃💃
Liefie...thanks
Scorchy....thanks for the info....may be brave and venture there on the weekend ...
just trying to keep up here with you lot is becoming a full-time job.....lol0 -
Stride, I need one of those too! Just yesterday I asked Marian on this forum about something that she had already explained to me just a few weeks ago, but which I had not remembered at all. Don't know if it's chemo brain, or how long that excuse will still work - lol. It's nine months PFC . . .
0 -
Hi Scottie....so glad ur appointment went well
Shianne...dentist will probaly want a feel......of ur neck...mine always does now!!!!!
Janeau congrats on weight loss i am now trying on ernest(ish)....treadmill arrived today..joy:)
Hearing what everyone is saying about friends....my so called best friend asked me a week or two after.chemo and rads were finished why i was sp hung up about bc.
As i was now cured!!!! No longer my bf....in fact we no longer talk:( on a plus side i have also discovered who my real friends are:).....
Scorchy i think you are amazing
Love the blog0 -
Ireland.....thanks....I also meant to say that indeed I too have discovered my real friends!!!...PS. so nice to hear from you.
0 -
Yes Scottiee..I have been really busy! Shelved the cafe...apparantly wasnt the only one with that idea!!! I've managed to find a f/t job starting 19th March so will give that a go.....they were worried about my kids.....so thought it best not to mention my little health issue! LOL. Im looking for a little bit of normality...work....hols.......scans....etc.
think Ireland is a bit behind when it comes to BC...most employers run a mile as i have learnt!0 -
Ireland...sorry about the cafe.....it was a great idea. Yeah, you are busy for sure with the
kids....make sure you look after you too!!!!!...Your "little health issue" should be kept to yourself...I know the UK....Ireland is not the only country that is backward. Keep posting when you can.0 -
Browsing through Pinterest and found this lovely picture of Adam Levine that us Adam Levine fans will love. Tattoos and all
0 -
Happy birthday for tomorrow Juneau. Glad to hear you are holding off on the lipo
Scottie: happy to hear the appts went well.
Liefie: chemo brain can be used for at least 5 years... least that is what I am telling people.
Ireland... one door closes and another will open - least that's what they say. Must be a good reason that the cafe didn't work out.
chrisrenee - thanks for the pic - phew !!!
Crazy busy day at work... didn't have time to log on, WTF ?? Just about to do dinner.
Wishing you all a great evening - chat later on.
Hugs & love to all xxxxxxx
0 -
Dear Ladies:
Thank you for the warm welcome, the enCOURAGEment, the reality testing and the advice.
It's heartening to know that I'm not alone; that my expectations to be back to "normal" by now are silly, and that others besides me are still in the healing mode. As many of you have expressed in the 75 pages of this topic (which I've read, and found comforting), the re-entry to work and everyday life is overwhelming to me. It's nice to know I'm not the only one.
I'm used to wrestling intellectually to get things done, as a lawyer; but am not very good at dealing with emotions, especially my own. And in my professional world, any sign of weakness is just something to be exploited: even though I mostly do deals, not litigation, we are advocates and gladiators by nature. The type of fight BC requires is hard because I cannot work or think my way through it -- it is essentially passive to receive medical care, to heal, etc.; all the willpower in the world cannot change the process of undergoing treatment nor speed up the recovery (physical and mental). I was thinking about the wise things you said, and realized that between two surgeries (in August and December) and radiation, I've essentially gone through the equivalent of two knife fights and a poisoning. If they were two knife fights and a poisoning, I'd be pleased (at 53) to be alive -- and perhaps more patient about healing. But because the wounds were medically inflicted to do good by attacking the cancer, I expect (wrongly) to have them be healed by now.
Believe777: Thank you for letting me know your energy levels are not back even though you're farther ahead in treatment than me. It's so helpful to know that (a) I'm not the only one and (b) I'm not a wimp. (I live in such a macho professional world, my emotional habits are to gut through things, and to expect that I can. Not probably very mentally healthy.)
Aruba: Thanks for the kind words. Sorry you were up at 1:30 am posting; the sleep disturbances are the worst for me. They gut my ability to think the next day. For some reason, I usually wake up at 2:30 am and again at 5:30 am. It would be fine if I could get up and work, but am just exhausted.
Scottiee1: Good luck with the 6 month checkup. Scary, but better to know than not know. Glad teaching suits you; I am from a family full of teachers: all my aunts and most of my cousins. A very fulfilling life that is not nearly as appreciated as it should be. I love practicing law -- or used to; now I am not sure. I like being in my own firm better than in a big law firm, where I was for 23 years -- a hostile environment for women generally; but what I'd really like is to take a few months off and just rest and exercise and sleep.
By the way, can I please join the weight loss group? After years of poor eating, and serious overwork, I'm finally working on losing the 50+ lbs that have crept onto my 5'5" frame. I've cleaned up my food habits and am walking every day. I'm down from my peak by about 20 lbs, but know I need to lose more. I'm currently 184.5 lbs this morning. I know what I have to do to lose (exercise more and eat less), just don't like it and find it hard to find time. But must drop it to lower recurrence risk. I hate the idea of Weight Watchers or any group I have to publicly join and do weigh-ins with, as I'm pretty private; but think this might work -- and am impressed with the progress the ladies here have made, and with the support you have been giving the group. I guess Tazzy would need to approve adding me to the list.
Chrisrenee: Anyone who would be bold enough to criticize another woman's choice of medical therapies when fighting BC is a complete jerk; I'm sorry you had to hear that today. There's no perfect answer, and unfortunately the state of the medical research has not yet yielded a cure. My oncologist's office unwittingly ran two different genetic tests on my tumor, and one yielded an Oncotype of 16, the other a much higher risk profile. My oncologist had ordered the first, not the second, as she thinks the second test is not proven. (Someone in her office ordered it by mistake.) We went through a few weeks of uncertainty while she called both labs, talked to the test makers, and ultimately the results simply could not be reconciled, so we had to make a judgment call about doing chemo or not. I opted not to do it, because I have to support my family, and ultimately thought my legal work would not endure if I had to do that too. I hope it was the right decision, but just have to live with the uncertainty. Not easy, as both my parents died of cancer (Dad - prostate - 12 years ago; Mom - lung, about 2 years ago, after 50 years of smoking, and living the last 10 years with me and my family.)
Ramols: I love your "find your happy" focus. Important to remember to look for it -- easy to miss it if you don't look. Thanks for the reminder.
Websister: Thanks for the reminder about both the physical rebuilding we are all going through and the mental processing. For me, the latter is harder (particularly the emotional part, which I suck at). I have ordered the book recommended by you and by Juneaubugg; it arrives from Amazon in a week.
Shianne29: I, too, walk like a grandma especially first thing in the AM. Never liked the AM much, anyway. Morning is completely overrated. Thanks for your kind words, and for letting me know you are exhausted too. I'm trying to turn down everything I can that is social, and everything I can that is not work related, so that I can rest. Which sucks, because I'm tired of being sick, just as all of you are.
Juneaubugg: I agree that strong and stoic is not a great coping mechanism oever the long haul. My husband has been a great support to me emotionally within his limits, but his limits are severe. He grew up the only sane member of a schizophrenic family (he's the only one never committed); he's super bright, also a lawyer, and used his mind to escape. He has tremendous survivor guilt. He is great at supporting me against the world, but takes any request for more or different help from him as implied criticism. Sometimes he's right! Sometimes not. My limits influence me too: I tend to get through tough things first, by gutting them out with willpower, then fall to bits emotionally. Guess I'm in phase 2 now. I have taken your advice and ordered the "Limbo" book; it looks great. I've also read your descriptions of continuing treatment, and applaud you: that's double tough on top of BC. (My family is Irish American Catholic, with an alcoholic binge drinking grandfather on my mom's side, which has affected the family for 3 generations now. Several cousins have gone through treatment; one died of his addictions. It's tough, tough, tough.)
Ok, I've blathered on long enough for one post. Thank you all, and if I missed someone please forgive me. I am so relieved to be able to unburden myself to you all; and to read your struggles; and to realize we are not alone in our efforts -- imperfect as they are -- to build back our health and lives to the extent we can.
May each of you have a great day tomorrow, and get something done you want done; with best wishes,
Embok
0 -
Hi Embok.....I think you hit in on the nail when you said you, and many of us actually,
are used to "wrestling intellectually" to get things done and now it's a constant battle
emotionally.....a much harder fight when faced with your own mortality. Many here will
tell you that it's a constant "roller coaster " that we all have to ride. I, myself, succumbed
to taking medication (anti-depressant daily and an anti-anxiety med when needed. They have saved my life really and keep me more or less emotionally stable. I am not alone here when it comes to meds....just something to think about and perhaps talk to your
GP about. I'm all for QOL and if the meds help me to achieve that, well, so be it.
You are most welcome to join our weight loss group. I'm one of the "cheerleaders" as
Letrozole actually has the opposite affect on me so I have no issues keeping my weight off. I hate that most of the women here are struggling with their weight due to their meds.
I used to be a registered dietitian until I found my "calling" so if I can be of help at all in that department, please feel free to ask.0
