Why was I stronger DURING treatment than I am now?
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I am proud of you Purl and tomboy for showing yout pictures. I have no artistic abilities, tomboy, but i deeply respect your vision. It sounds so honest.
Janet, your words to describe the situation are dead on. The survivorship glamour kind of reminds me of Tampax commercials.
2tabbies - thanks for the support on the work thing and emotions in general. I wish things were different for you too & you could do what you like instead of trapped for insurance. Insurance is my trap too.
I have had some battles with my work, but so far the threat of exposure for their bad behavior has forced them to allow me back to work to avoid the public embarrassment. Today however, my boss told me exactly how much the rate increases will cost the employer next year, and that our executive board will meet next week to handle that issue. Then commented how some people use the insurance a lot. That is what got us into this big increase. What an asshole. I have such hard feelings towards him for things he has said and done since my diagnosis.
Speaking of assholes. This woman talked me yesterday, she is a client of sorts. She proceeds to ask me how I am doing. Fine conversation. Then she says how she noticed I have started reconstruction. Bad move, she says, any surgery to you body causes the air to get in & you will get cancer back and die within 3 months. So, she goes on to tell me that even if you hurt your wrist, no surgery...or dead within 3 months. She gave me 3 stories of this supposedly happening to people she knows. It has been nice knowing you all. I apparently only have a week or two left. WTF?
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Smurf! Holy shit! Are you telling me your boss is more or less blaming you for an increase in the insurance rates?! Oh, yeah. Blame the sick people for the crappy state of our health "care" system. Unbelievable. I can't tell you how furious that makes me. Then you have to deal with that moron woman with the incredibly stupid ideas about surgery?! I suppose you had to be polite since she's a client. I guess I'm the walking dead because I first had surgery when my tonsils were removed at age 5. If that didn't cause me to get cancer and die, surely, the hysterectomy/oophorectomy must have killed me. Does this woman know no one, not one person, who has had surgery and lived to tell the tale longer than 3 months. She is just a wack job.
Janet, you aren't the only one with crazy stuff going on inside your head. You're right that as much as I hate the visible damage, the invisible stuff is worse.
Tomboy, thanks for posting your photos. People keep telling me that I look great. I don't know if they really think so, and my perspective is warped; or if they're lying to make me feel better. I'll see what photos I can come up with. One of my most hated changes doesn't qualify for this project because it's actually from my earlier ovarian cancer. I have a puffy lymphedemic leg. I hate it especially in the summer. A lot of the BC damage, I can hide with clothes. I really think my face does look older than the 2 years that have passed.
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Well our move is done and my body is protesting...to give you some idea of how many times I've been up and down stairs...I have rug burn on the back of my legs from pushing my feet to the back of the steps. I am stronger than I thought....but I really need a rest.
I have been waking up with tingling hands. Is this a SE of tamoxifen or something else?
Before I left work for this week off my boss said "you'll come back refreshed and relieved the move is over"... Um...not so much refreshed. I know I have to make the appt for my first mammogram since do. This radiated boob still has scabs/peeling....and everyone thinks I'm "done" and beat cancer. Are we ever done?
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Hi everyone, I haven't been on the boards for about 6 months due to getting our 15 year old house in Northern Virginia ready for sale (major major replacements/renovations. We moved because my very supportive husband was turning 71, hated his job and commute, and we needed to relocate to somewhere we could live on our retirement income that is primarily Social Security with some 401K back for health issues and emergencies. We chose Wilmington, NC, where we had vacationed over a 4 year period. I really wanted my husband to retire, especially so he could tend to his own physical health and be around a long time!
I was a dynamo during the house prep stage of moving. I felt strong, competent, happy. Once the house was ready to show, I needed to move to our muh smaller and less nice NC home with our dog and blind cat so the house in VA had a higher likelihood of selling quickly. Well, we did sell the house within a week of listing but for various reasons my husband could not join me for about a month.
I am an introvert and have to push myself to meet new people. I also suffer from recurrent depressions that are medication resistant to some degree. Well the month alone here took my happy high functioning self into a deep depression and homesickness for the area I lived my whole life. Also, the culture here is really foreign to me. People from here are very nice but it is much more rural. My husband is now here and I'm a little better but it is time to get a tune up physically and emotionally. I really am pretty much a wreck! I was surprised to find when I googled and looked at Amazon Books that very little is written about homesickness. Can anyone who is shy weigh in here about dealing with relocation? The discussion boards here literally saved me during treatment and for the months after. I can't believe I waited this long to be in touch with my BC sisters.
I have to find a therapist in Wilmington for short-term adjustment issues and a whole host of doctors, especially an oncologist for follow up of TNBC. Good news is that I will be 3 years out with NED in December. Bad news is I blew off my 6 month follow up visit in VA with my oncologist whom I like. I think I was just avoiding saying goodbye to her and repressing the fact that I would have to face the difficult job of finding a new good oncologist for follow up care in NC. I've done a search on these threads and found a few people saying UNC Chapel Hill may be a good place to start. Does anyone here have any other suggestions in this regard? Is there an oncologist in other places within two hours of Wilmington anyone would recommend. There is a cancer center here but it is small and no one specializes in breast cancer much less triple negative breast cancer. Also, my interaction with the person doing the scheduling and triage at this Center (Zimmer Cancer Center) was really negative.
Just writing to you all has lifted my spirits some. Thanks for listening!
Hugs,
Peggy
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JJ, I'm glad the move is finally over and hope you can get some rest. I don't know if we're ever done. I certainly am not done yet.
Peggy, welcome back. I can't answer any of your questions on NC, but I am familiar with homesickness. I've moved around my entire adult life after living in one place growing up. It never bothered me much until I got older. Now, I have days when I just want to go home. My mother passed away a few months ago, and if anything that has made it worse. I'm not sure if I can be of any help. I just try to get involved in things that take my mind off of it. It helps that I do really like where we're living now. Good luck. I hope you find a great new oncologist and a good therapist too. I have a question for you. I hear people talk about being NED. How do you know? I don't have any breasts left to mammogram, and no other scans are done or any sort of test to actually look for evidence of a recurrence. They just wait for symptoms to show up. (I'm stage III.) I've never felt I could say I was NED because nobody is looking. Do you have any regular scans or other tests?
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2 Tabbies, thanks for the encouragement! No BC groups here. It really is a congested small town.
About the NED, I may be wrong but when you go for your follow up appointments and the oncologist is satisfied with her physical exam and your answers to her questions about symptoms, etc. then for the moment you are NED.
Neither of the two well-known oncologists that I have seen do scans or blood tests and it seems from reading these posts that unless there are symptoms most oncologists rely on physical exam and interview to determine diseases status. If anyone understands NED differently, I am also curious about what it means to them.
Hugs,
Peggy
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Peggy, that is quite my understanding as well. I also live in a very small suburban/semi rural area with my regional hospital and 2 oncologists serving a base population of about 25,000.
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I don't get NED. After treatment I thought it would make sense to do a scan to make sure all is clear. I'm due for a mammogram next month which will be the first since dx. My rads ended on May 13th...and my breast is still peeling and tightening.....I had thought my symmetry wasn't too bad but I can see the changes through pics I take. Thank God my phone is password protected as there are some really interesting pics on it
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Peggy, thanks for your explanation of NED. If that's correct, I'm afraid I think it's a joke. My MO told me that if my cancer recurs, it's unlikely to be local. Rather it would be mets somewhere else. He gives my underarms a cursory poke to check lymph nodes probably more for my lymphoma than for bc. That's it for his physical exam. My RO palpates where my breasts used to be and under my arms. But these are the very places the MO said a recurrence is not going to be. Not to mention that my original 5 x 8 cm tumor was not really palpable. "No evidence of disease" is meaningless if they aren't looking for evidence in the places the disease is likely to show up. And that would require scans. It would be more accurate to call my state NLFD - Not Looking For Disease. I hope the rest of you take more comfort in NED than I do. I think the 6 month checks are a waste of time and money in my case. My MO and I spend more time talking about his dog than about my health. Sorry to be so negative, but that's how I see my situation.
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2Tabbies! Thanks! You made me laugh out loud : NLFD !!!! HA ! That's a good one. I don't think you are being negative, I think you are being accurate !!
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Two Tabbies- unfortunately I am with you in that camp. Even so, NLFD made me laugh.
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Yes, I am definitely in the NLFD camp!. After the surgery and radiation were over, I was placed in a holding pattern. I see my so-called oncologist for 10 mins every 3 months. He goes through how are you, any side effects, do you need more Tamoxifen, and then out the door. He doesn't write anything down (other than the prescription) and then it's "see you in 3 months". I was diagnosed as Stage 4 from the start, but I won't get any scans until around Xmas - almost a year after diagnosis.
Do I still have 2 tumors in my hip? Dunno. Do I have new tumors anywhere? Dunno. Has the drug I am on made any difference? Dunno. Does my oncologist care at all? Dunno. Am I NED? Dunno!
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Sue- do you have any option to change oncologists
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Peggy - I wish I had answers for you re: being home sick but I don't.
I understand your pain. We relocated in 2008 from MD to PA for DH's employment. I am still homesick. The people here are very different, and I spent my entire life in MD. I'm close enough that I can drive to my home turf, and often do, but that just makes it worse. I thrive on routine and the familiar - some people are much more adventurous and do well but not me. I hope to return 'home' one day, and I hope that opportunity is there for you, too, if needed.
Hugs.
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Feeling a little disconnected from this thread... so am reconnecting, Here is me maybe 6 weeks post final chemo.... taken me ages to upload this! Will post more recent, if i can work it out again... Apologies for rather large size!!!
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Whoop di whoop. Here me!. Notice how my hair is thinnish at the front still. Sigh... i am in London tonight staying with a friend of some twenty years standing. I enjoy both of there company...but still feel like i want to get home. Anyone else like that? I just want to be home. Enjoying all the pics and pleased i am back here again!
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Winter, yes, that happens to me too. I have fun away from home, but man am i happy to get back to my bed, my porch with all its plants, just-- home. I am loving that everyone is sharing there photos. I really think I must do this. So, I will work out all the details, and let me know if you would like to be included. I don't think this is vanity, I think we all knew that we would look different as we aged, but just not so quickly. I love your fly-away-hair, Winter!
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Winter- GORGEOUS! Before and after. Glad you're back
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where did you disappear Winter? You look full of fun and mischief........good to see you back.
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2Tabbies - Love, Love NELFD! I meet with my MO in a couple of weeks for a check -- I have to take a full day off in order to travel 2 hrs for a 10 minutes appt and then back 2 hours.......MOs should use the internet and face time to save us the stress!
Wintersocks - Beautiful!!! I love your wavy grey hair...!
I too feel that I am best at home. I use to travel all the time - and now I am a home-girl. It is just more comfortable.
I still have issues with sleeping on my right side or stomach....I wake up in pain every morning. I have had so much pain that I stopped my Tamox on Friday to give myself a break for the joint pain and haziness. I never feel refreshed. I am always tired and no one gets it! All my family and friends think "I am done and cured" - but I am not.
Sending hugs to all my sisters!
Lisa
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My first post on this thread but you are all making me feel so much better! Started Tamoxifen a month ago, right after finishing radiation. Saw my MO. It was probably 3 minutes, maybe 5. No physical exam, just asked how I was doing, then said see in you in 6 months. Seemed like a big waste of time (oh, and the hour wait in the waiting room because they were behind). I have no idea if I'm NED, remission, survivor, NLFD or what. Only test I know of in my future is a mammo in December before seeing the RO again. Haven't had any other tests since prior to surgery (except blood work). I'm doing fine, but it does feel like a bit of an uninformed wasteland of waiting around now.
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OMG, I am in your same position. I was initially diagnosed in 2010. Stage 3C. I had lumptectomy, mastectomy then later after had my other side removed, went through radiation, reconstruction then tamoxifin. I look back and I see I was much stronger then than now. The cancer came back 5 years to the date. But had matastisized to the outside of my bladder. It was a mystery for alot of doctors. Iam now diagnosed as stage 4 matastic. I thought someone hit me with a brick. So back into chemo, just had surgery to have the cancer removed and now waiting to,see what the plan is now to keep it at bay. Basically looking for a miracle drug. I am so depressed. I cry everyday sometimes out of nowhere. First thing I thought about was my husband and 25 year old daughter and that this IS coming back again. And I'm thinking, I don't think I can go through all if this again. I to am looking for woman that have beat this, success stories. I am on wellbutrin, but not helping with this depression. I am so tired of crying!
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aliciah, I am so sorry to hear you are having such a bad time, and it's awful to hear that you are crying so much. Do you have some support? I am pretty certain if that there is a ILC thread on BCO, I am sorry I cannot do the link, but if not stay with this thread , there is usually someone to offer support here.
Lily,I have not felt able to post - It's a hard time right now as the kids are with their dad in Spain and as you know, I am finding that so hard. Also I am still plagued by UTI's and back on abx again. I am waiting to have tests to see what is going on. I am getting them practically monthly.. Also waiting to have the 2nd stage Diep, but have yet another lump on the recon. This is the 3rd one. The PS does not seem overly concerned, but this is the 3rd lump I will have biopsied. I feel like I cannot move forward.
How are you too? I do hope you are doing ok, I have not seen many posts from you lately.
Lili Ri, Thank you for the grey haired compliment, I was grey from my mid thirties! I keep thinking should I dye it, but I just cannot be arsed. Also, I think having it grey is curiously empowering.. striking out for the older woman!. My hair was so so much thicker, before all the bc treatments. I do mourn that. I am home now and I breathed a huge sigh of relief when I got indoors. See so many others, like you and me, also feel the same way. I feel it is my sanctuary. Why do you think you have so much pain? Have you been to the surgeon? It's awful to not feel refreshed, I think you need to know why this pain is continuing
Orgal, What's nlfd? ~ welcome to this thread!
Sorry if I did not mention everybody, but I have to get to bed now as it is 1:10 , here in Blighty.
Love to you all
WS
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WS- Two Tabbies wrote a very clever but also scarily truthful post about what we are, where we are, after tx ends. Instead of saying cured, they usually do very little during follow up examinations, then pronounce you NED (NO EVIDENCE OF DISEASE). TwoTabbies very astutely pointed out that they aren't fucking looking for it! (swear word mine, sorry). So how do they know? She said they should cal like it NLFD (NOT LOOKING FOR DISEASE). A cursory feel, and a quick chat. No scans, many MOs don't do tumor markers either, believing they result in false positives.
No wonder we aren't stronger after treatment. They cut the rope, push us out of the nest. Good luck to us
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aliciah, I'm really sorry you are having to go through another ordeal, it sounds like you have already been through so much. It's perfectly natural that you are feeling emotional and tearful, it must be very scary and we all know waiting for test results is horrible. I hope that we can offer you support when you need it
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I'm glad I could give some of you a laugh. We might as well laugh at it, I guess. I'm nothing if not cynical and sarcastic!
ORGal, welcome! I'm an OR gal too. Just north of you in Salem.
aliciah, I'm so sorry you've had a recurrence. Maybe a change in antidepressants is in order if you're crying all the time. I have an appointment with my PCP to talk about increasing mine. It's not enough. Maybe some counseling would heip you too. I'm thinking of trying that again with a counselor who specializes in cancer patients. Hugs! Praying for a miracle drug for you. I have ILC too. It sucks.
Winter, good to hear from you. I love your photos. My hair was well on its way to gray before chemo and came back completely gray and curlier. I just had waves before. I can't be bothered coloring it even though I think it makes me look old. I'm just too lazy and too cheap to keep on top of it. I like what you said about it being empowering. Yes, strike a blow or two for us older women! I agree with you on wanting to stay home more. I want nothing more than to sit on my deck and watch the birds.
Jackbirdie, yes! The push us right out of the nest! Sadly, I think it's to make room for all the others coming along behind us.
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two tabbies- yes that may be the unfortunate truth. There will be a need for many more oncologists in the future. It would be a sad job, but if any of our kids are headed for medical school....... That would be a wide open specialty. Maybe the next generation of MOs will be better trained in the all over effects of treating bc. And address this issue of dropping off the radar after initial tx.
I think WS' after picture us VERY attractive. Empowering yes, but beautiful in its own right. I have only a little hair right now. I was a strawberry blonde, into which some grey was weaving. It looked pretty natural. I would say at this point it's coming in white. Ugh. I can hardly wait
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JJ Ontario,
Its been 10 months since my last rad. I am still tired but so much better than a few months ago. Really, hold on, it will get better but don't compare your energy with what you had before bc. You are no longer that person.
Sometimes it saddens me. My DH use to call me "the little factory" because I produced so much in one day. Now, my goal is to make it to the end of the work day and two days a week I bully myself to going to pilates/yoga after work.
I am try to accept that nothing will ever be the same and I mourn for the person I use to be.
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Me too, Raider. I had a job working at a big museum here, doing build-outs and hanging lighting, tons of painting, moving heavy objects, long days of sheer physical labor, and my boss, who was a woman 15 years younger than me, said she never met such a strong woman. It was something I was very proud of. And I had excellent balance, too, I was one of those people that would scamper right up and stand on the top of the ladder, even the 15 foot ones, and then I could reach and stand on one foot there, without thinking twice. No more. My balance is shot, I lean when i am standing! I turned forty-leven (thats what I told my boss) when I worked there, I took a six month break, what I thought was a break anyway, and was diagnosed when I was forty-twelve. In a few weeks, I will be fifty-six, and things are a little better, but I know I can never do that kind of work again. Before treatment, I knew the day would come when I would begin to phase out from that kind of work, but I never expected that it would happen, all at once.
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I hear you Tomboy. Dot k ow if I can return to the work I love. Feel like the floor is slowly collapsing under me. This is the first I've been depressed since my diagnosis last year. Good thng I have a great counselor, PCP and meds that help or it would be pretty bleak here
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