Why was I stronger DURING treatment than I am now?
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naps are still my favorite.
I work from home...and travel to my work locations...so while I work 60+ hours a week, no one sees me take an hour nap & then eat at my desk while emailing. Prior to bc, I worked many more hours, but am salaried...so it never paid off. Long live the nap.
My college roommate was very lucky. Her cancer stayed stage 1 & she will only have to do radiation. I am so happy to hear she doesn't have more to go through. She is a newlywed & a very smart kind person. I was so scared for her.
Internally, I have been pretty negative lately. I think my friend's cancer may be the kick in the pants I needed. I am trying to think more positive and enjoy myself. That is a work in progress.
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Peggy...I messaged you as I lived in Wilmington and moved a bit north to hampstead! You will love it! Rosie
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Rosiesride,
I am beginning to love Wilmington! I was so homesick I didn't think this could happen. Now that my daughter and grandson have visited twice this summer, I feel much less of a sense of loss about moving.
Thanks for sharing your thoughts here and in the PM. Could you PM me about areas in Wilmington that have high crime rates? I've been hesitant to explore all of downtown Wilmington because I'm unfamiliar with the area. I knew in DC and MD and VA what areas to avoid. Does this make sense?
Hugs,
Peggy
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Peggy...one exciting new venue is the theatre at our community college downtown! The student union building is also new and has events...check out cape fear community college theatre...Liza manelli in october
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So back from Costa Rica and already things are crazy!!! Went to see my BS who acted surprised to see me. I haven't seen her since the follow up to my surgery back in January but her mood changed when she saw a 4cm bump (cyst) in my good boob that when I lay down looks like a second nipple. The bad boob also has some smaller complex cysts that need to be rechecked. It was last September when all this started for me so it really feels like déjà vu. Mammo and Ultrasound being scheduled followed by a possible MRI and possible draining/biopsy of the large bump. I know in my head this is all most likely nothing...but it still messes with your head. Physio also being scheduled for my tight arm.
Did I mention Costa Rica was wonderful???
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JJ, Costa Rica is on my bucket list. U hope all you lumps turn out to be nothing. That's why I opted for a BMX. I was so tired of cysts and biopsies. Sometimes when I look in the mirror I wish I hadn't though.
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2Tabbies....I have been lucky enough to travel a lot of the islands and Costa Rica is so unpretentious and relaxed. We are trying to find our flights for Christmas.
I thought the tamoxifen would decrease me getting so many cysts (???). Every bump now plays with my mind but getting a mx also pounded me because I had breast augmentation (and the boobs of my dreams!!) only 10 months prior. I was on the "just breast implants" forum and had people wanting to copy exactly what I had (it's a very similar forum to this one). It all seems like a line from the Alanis Morrisette song "isn't it ironic"...
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JJ, it absolutely is ironic. I was really happy with my breasts. They weren't big, but nicely shaped. In fact, they were the one part of my body about which there was nothing I would have changed. I saw my RO for my annual follow up today. It was the first time she'd seen me since I started recon. I'm not done yet. I still don't have nipples, and might get a little revision for better symmetry, but she said I looked really good "compared to some women she's seen." Sigh. I know it was meant to make me feel better, but since I loved what I had originally, it didn't. I wasn't having a good day anyway. I have crappy mood swings, and today was a depressed day. I felt like I was in a complete fog. I couldn't even answer half her questions. My mind just didn't want to work. I'm pretty sick of this crap.
I hope you get your tickets for a Christmas jaunt to Costa Rica.
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This thread has been quiet. How is everybody? I wish I could say I'm doing great, but still depressed and angry. Just was in to see my PCP about my blood pressure. She says she doesn't want to increase my meds because it's not that high. We need to address the stress that's causing it and dump the anger. Easier said than done needless to say. My Effexor has been increased, and I have an appointment for counseling. Haven't had good luck in the past with that, but if I don't go, my doc will think I'm not trying. Unfortunately, more appointments add to my stress because I'm out of sick leave. I need to quit my job so I have time for these appointments. Hell, if I quite my job, I probably wouldn't need half of the appointments.
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2Tabbies....yes, I hear you. I'm having a hard time with work. I use to like my job, like not love...but since I went back all I want to do is be at home. I was diagnosed with pneumonia last Friday but I've had 3 weeks of feeling awful...I am just so tired of being tired! I only took 2 days off of work because I feel guilty. I think my DH is also getting tired of there always being something. I go for a mammo and US on Tuesday to check out a couple lumps that are being watched. It has me stressed. It's been an entire year of stress! My kicker this week was finding out someone I know got a job I would have liked but it wasn't posted...it was just given to her.
Just know you're not alone and I hope you feel better soon. Do you write in a journal? That sometimes helps me...or just a long hot soak in the tub. At least today is Friday!!!
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ph dear, pneumonia, the tiredness is sometimes the first syptom and the last one to leave. Rest, and be kind to yourself. It is a real bitch to get rid of. and sometimes you think I ts gone, but you don't feel quite 100% and you need more drugs....I've had it several times.
I am curious because you all are taking Tamoxifen. I am on Arimidex, tried Femara for 4 days, went back to Arimidex, and now I am on a 2 week break from it and feel fabulous. My Mo said maybe we could try Tamoxifen but because I am post menopause, he really wanted me to do the Aromatase Inhibitors. I was hoping to not have depression as a side effect with the Tamoxifen.
Do you think your depression is drug related, or just the ordeal of the cancer in total? I retired at 51, was diagnosed at 57 and I know I couldn't have kept up with work and all that this cancer crap entails. Thanks for any advice.
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JJ, I'm so sorry to hear you have pneumonia. I'm physically "healthy" more or less, but mentally a mess. I don't hate my job, but it's sure not my calling. I feel like I'm just working for the health insurance and retirement account. I'm almost wishing for a bad cold or something so I could take a few days off, but since I don't have the sick leave available, that better not happen. I hope you feel better soon. Take the time off and rest with no guilt. There's nothing to feel guilty about.
ReadHeaded, I know that some of my depression is from lack of estrogen. I don't know for sure that Tamoxifen made it worse, but I think it has. All you can do is try it, I guess. Not everyone gets depressed on it. I'm going to ask my MO when I see him next month, about trying an AI. I just read where Femara is more effective than Tamoxifen against ILC anyway, and that's what I have. Of course, I also have osteopenia, and Tamoxifen is easier on the bones. But I can't go on feeling like this.
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HI 2tabbies .
yes, it has been quiet, I was wondering where all had got too, and was worried to post in case no one saw it and also that my list of moans were too loooong, so I kept away. it's lovely to 'see' you here again. I understand how you feel depressed, me too, but not angry. Do you know why you feel angry? I just feel numb..
I am on Venlafaxine, and still feel so down, what dose are you on? Perhaps I should up mine as it does not appear to be working! I am having far too many duvet dAYS. The job sounds too stressful, can you reduce your hours? I did counselling too, but I did not found it helped so much. I hope you can find it useful this time around. i too think that I cannot go on like this, but I do not know what else to do??
I have osteopenia too, and will get a scan maybe March to see if that has gone into Oseteo proper, what a treat! - another disease!
jjontario, Oh no, pneumonia you must feel so tired, if not exhausted, I hear it can be difficult to recover from, you must try to take it easy somehow. I hope the mammo goes ok, and these lumps are nothing of concern, but it sure is stressful waiting.
Redheaded, I am on Letrozole, Why did you come off it? were the side effects too much? My friend is on Tamoxifen and seems to be having a terrible time on it and has had a cat scan, because of so many aches and pains, especially in her lady bits, nerve stuff and now she has lumps on her outer thigh... heaven knows what they are. Now she waits...
A few weeks ago I was seriously unwell, and was admitted to A&E with a UTI *I have had them consistently since a gynae op (2013). I was 1 score away from being in ICU, as my obs were so poor, rigors, vomiting, temps out of this world 48.1, IV abx and IV paracetamol. for a week. My temp would not reduce. I had a CAT scan and the UTI had ascended to my left kidney. Now on prophy abx and looking at another gynae op, following urodynamic testing. Actually, I can see why I am depressed here. Actually, crying now... don't know how to climb out of this black hole...
So pleased to be back here!
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Wintersocks! Good to hear from you, but I'm sorry you've been so ill. That infection sounds awful. Sorry to hear you have to have more surgery, and your friend is having such trouble too. I hope your osteopenia hasn't progressed to osteoporosis. Don't worry about posting a long list of troubles. I feel that way too. I'm angry about this whole mess that seems to be my life. I've had 3 different kinds of cancer despite doing all the things that we're supposed to do to stay healthy. I'm angry at my body for betraying me like this. Illogical and unproductive, I know. I'm also angry that I have to keep working at this boring, useless job when I don't know how many healthy years I might have left. I had hoped to be able to enjoy retirement at some point. Instead, I drag myself off to work. I feel like I have no time to enjoy life, such as it is, between work and constant doctor's appointments. I don't know if I could cut back my hours without endangering my health insurance. I tried to find out, but didn't have much luck. So I'm trying to just stick it out until I'm 60. My husband is older than me and retired at 60. That was the required retirement age for his line of work. I admit that it frustrates me that he gets to do what he wants all day while I go to work. I would welcome feeling numb at this point. Not that that's good either. I've just had my dose of venlafexine increased from 150 mg to 225. I thought it was helping, but then I fell back into the black hole. So there are at least 2 of us in hear! I wouldn't wish this on anyone, but it's nice to have company.
JJ, I didn't answer your question on journaling. I have heard that sometimes it helps, but my attempts have been less than successful. Just the same rants over and over. I hope your mammogram and US don't turn up anything troublesome. I'm sorry you didn't get a chance at that job too.
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WEll I have not posted much either as I am fed up with feeling fed up, I felt loads better off my AI (I took the holiday as Onc refused to accept it was Aromasin causing my symptoms) and most of them went away, I can sleep now and feel rested, not all the time but 5 days out of 7........as opposed to 0 out of 7.....then when I told my Onc he said oh yes well you had better not take that then if it "tortures" you so much......now choose between Arimidex and Tamoxifen...........I chose TAmox but did not take it and dont feel right about taking it so have now got a prescription for Arimidex but I feel very reluctant to start on it.......what IS different is I have constant hip pain, which I did not have pre AI´s and the wait for a bone density scan is 18 months here so still have some months to go..........
Sincé cáncer I have lost so many aspects of my life, my body, my breast (still no recon I have lost hope it will ever happen and hate how I am), my relationship, my home, a place to live that is adapted to my health needs (like eye level oven), my peace of mind, my body confidence, a pain free body, happy lungs, a job, income, financial security, I could go on,,,,,I try and look at what I have and be humble but its a much shorter list by comparison............at least I am not a refugee.......
I don´t say a lot anymore on here as I am bored of hearing myself say it and I really do try to move on, and do loads of other things......but this weekend in particular I have a huge sense of loss........and even writing it has me in tears.....I feel so alone, even get irritated with the dogs at times and that is not like me.................
Winter - offer is still open for you........x
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Wintersocks---sorry you have been so ill. Glad you are back posting, no matter what you post about. I only last3d 4 days on Femara. I felt like I was 157 instead of 57. IN FOUR F*ing days. Coulnd't believe it. Right back on he Arimidex I went. My Arimidex experience was nothing compared to the Femara, but from what I have read, if you can tolerate one, you usually don't tolerate the other one. Our bodies seem to sort us out as to which one we prefer. My MO switched me (tried to) due to elevated cholesterol.
My goal is still going to be to stay on the Arimidex if possible. Maybe see about trying to add a very low anti-depressant to the mix. I see the RO about the breast pain on Nov 21 and we will see then if she thinks it is just a radiation side effect or if I need further exam. I am just working myself into a state about it worrying.....
I need to just remember to turn it over the God and get on with living. There is power in prayer, that is for sure.
Do your best, give God the rest. Ladies. I will pray for all of us today. I tell my friends I can do anything, I've had cancer....and it's true---we are a tough bunch of sisters.
On a funny note, one of our mammagram facilities had a bra decorating contest for Breast Cancer month. My oncologist office did a Lemon Yellow bra with the phrase- An Annual Squeeze will help save THESE....LMAO. (They are all men)
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it is so great that everyone is posting again. No apologies about what you post. 2Tabbies, Wintersocks, Lilly, and Redheaded1...everyone has gone through so much and my heart feels for you all. This is a place we are allowed to vent...thank God....because my DH is getting tired of hearing me. I never in a million years would have believed how stressful life could be after treatment was "done" and it kind of freaks me out how much I've changed. I just don't care about some of the things I use to.
Pneumonia has wonked me out. I felt like I was starting to get my groove than this slaps me but I'm more stressed about my scan on Tuesday. Question for everyone....I have had breast cysts for years. My family Doc said it was because I was premenopausal/hormonal. If this is another breast cyst...I'm wondering what the tamoxifen is doing??? It sucks to have another lump...and I friggen hate waiting for these scans.
Hugs to everyone...
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Cysts are not always hormonal and it could be a fatty lump...............
I have loads of lumps on my flat side now and told they are all fatty lumps after ultra sounds............but i get more in spùrts
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Lily, good to hear from you. The losses to this wretched disease do add up. I guess I'm lucky to still have my marriage and my job. I know my husband is sick of hearing my complaints so I try to shut up about it. I'm sick of my job. I feel like I'm wasting however much life have left. I get no satisfaction out of it just a pay check and health insurance. I'm seriously considering ditching it. I have other insurance, but it would mean bigger medical bills without the second policy. I hate the feeling of wasting time while the clock is ticking on my life.
Redhead, I'm glad you have a sense of humor about breast cancer "awareness" month. I've lost mine. All the mammograms I had every year did nothing to save the body parts that they squeezed since I got ILC which doesn't show up on mammograms. So, I'm just a tad cynical about all the "awareness" and "get your mammogram" hype. I'm glad you got a laugh out of it though. We all need as many laughs as we can find.
JJ, hang in there a couple more days. I so hope those scans show nothing. I've started having some sharp pains on the side of my right foob and under my arm. I haven't, up until now, been to panicked when I get random pains, but why am I have pain there? This was the prophylactic mastectomy side not the cancer side. My mind is jumping to conclusions like maybe they left some breast tissue which is now getting cancer. Unlikely, I know.
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I will let you know how my scans go. This will be my first mammo since treatment and surgery. I'm kind of freaked how they are going to press this boob because since rads everything has tightened up so hard. My implant now feels like Tupperware. Looks wise the shape isn't too bad it just sits up 3 inches higher. I know I'm lucky....some are a lot worse off...but it still bites.
2Tabbies...I'm so on the same page as you. I sit at work and think about all the other things I could be doing instead of pretending to play the work game.
DH is stopping at the drugstore for some Mucinex to try and break up my congestion. I'm also finding a lot of pain in my tailbone which could be a SE of tamoxifen...I may end up at the Dr's again. I swear...I'm 44...but I'm feeling like 104. I'm getting so sick of a whole year of this. When does it end
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Ladies: I have missed you all so much! I feel exactly the way you all do....tired of everyone asking how I am doing and responding with " I am so tired.". I work to support myself. I work for health insurance. It all sounds so petty in light of what we have all suffered (or suffering) through just to rid ourselves of BC. I have had a long and hard path since my diagnosis in April 2013. I am only 5 months out since the removal of my left adrenal gland in May due to Cushings disease! My belly is still so big and tight! I have only had Stage 1 DIEP. I am depressed. I stopped Tamoxifen on August 6th. My MO does not know yet. My bone density scan reveals osteopenia. What more? We should all feel free to vent on these boards when we need to. Without you all here, I would not have made it this far. Many hugs to you all! Lis
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JJ, I tell myself the same thing about the cosmetic issues. It's "minor" compared to a lot of other things. But yes, it still bites. The problems with contraction, etc. after radiation are why my PS insisted on an LD flap. I should be grateful. I look fine in clothes. But all I can see are the flaws - the scars, the flap of skin from my back that doesn't match the irradiated skin on my chest, my profile which isn't quite right. Maybe someday, I won't notice. You nailed it about "playing the work game" too.
Lili, good to hear from you! I've been at this just a couple months less than you. I was diagnosed in July 2013. I gave up saying I'm tired, and just tell everyone that I'm fine. They're going to say I look great anyway, so I might as well just play the part. Sorry to hear you have Cushings. That really sucks. Like you said, what next? Let's hope nothing.
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I completely understand your situation. I am living it myself! My last treatment was in January. I feel broken, weak, burned out, you name it. But there is no time to take a break and heal yourself. I have kids too! My husband works long hours. It doesn't matter how I feel or what I need, I have to provide for others. I had sooo much support when I was going through Cancer but now? It seems everyone thinks I should be over it. There is more to recovery than that. I have never been a sickly person, but now I have 4 doctors. I'd love to fall apart, but I have too many responsibilities. A full time job, 3 kids, doctors appointments, school appointments, etc. It can be very overwhelming! Emotional support? Forget it. That's why I'm here now. If you feel like talking, I can respond when I'm on line.
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Starsong-
We want to welcome you to our community here at BCO. Thank you for sharing your experiences; we think you'll find that many of our members can relate. You are not alone, and you've come to the right place for support!
The Mods
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starsong, I am sorry you are having a tough time, it is really difficult to have to carry on with everyday busy life when you feel like you are several steps behind on the inside. People don't always understand that even though you are more or less healed on the outside the toll it takes emotionally and energy wise is far harder to 'get over'. This is a really good place to come to for support and understanding or just to vent.
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Starsong, welcome. You really do have a lot on your plate. I hope you can find the support you need here. We get it.
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SuzyBlue and 2Tabbies - I'm here for myself and others. I'm glad someone suggested I look for something like this. Well met! I've had a mastectomy, chemo, and radiation. My bones hurt and I swear I have more doctors than I know what to do with. I just want to be a part of a group of people who are dealing with the same basic problems. I play the smiling "I'm fine" game. Some people know me to well to buy it. I just say, it is what it is. Not that I really feel that way. I come home from work wanting to pass right out! But no, can't do it. My husband tries to commiserate, but he fails. He's tired after working all day, but he doesn't really understand. My daughter is a big Breast Cancer Awareness freak! At 8 years old, she was my nurse. I gave HER Mother's Day off and got up to cook dinner. Cancer can really twist your life around. I swear it is worse when you are recovering, though. You want to be who you were before but that is a LOOOONNNGGG road!
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Good Morning
It's really nice to hear from everybody again - this thread was quiet for a long time. I just wish we all weren't so f*cking tired. It seems to be a common theme. And I can relate so much to everyone who is tired of being tired, tired of hearing themselves complain, tired of doctors, tired of work, tired of unsupportive friends. The tiredness never fully goes away, and just keeps hitting in waves.
JJ Ontario - You said you feel 104. Same here. It's especially rough in the morning when I have to shuffle around like a turtle on its hind legs until everything starts to unfurl. I've always been a barefoot kind of gal but now I keep slip on shoes (soft, supportive) by the bed so I can move around. All he self care I do now doesn't get me ahead - it's just basic maintenance.
The thing is though - I don't know whether the aches and stiffness is my age, my cancer history, or the Letrazol. Some of my girlfriends complain about stiffness is I don't think they fully understand what a hit my body has taken. And I've stopped bothering to explain. I know their complaints are completely valid - but I just feel like I have to try three times as hard as they do, just to stay 'normal'. But on on happier note, my 85 year old mom thinks it's fantastic that she and I share the same fitness regime. And mentally I feel pretty good.
Wintersocks - I am so very sorry that you're in the black hole. Wish I could come over and haul you out of there - you've been through so much. And JJ Ontario - I really hope you start feeling better. Pneumonia is a nasty blow. I don't have kids, so I can't even begin to imagine how much extra hard you all have to work to get through the day.
Starstrong - Welcome. You wrote that things can be worse once you're recovering and I think that's true. In fact, I know it is. From here on in the healing is invisible, and it's slow, and the inside ( as someone else wrote) is always several steps behind the outside. I felt wobbly for the longest time. Once my hair grew back my 'support crew' breathed a sigh of relief and collectively said that it was nice that I was back to normal. Ha. I was nowhere near normal, and felt like I was faking it every step of the way. I was more fragile than ever but had to step back into my old life - where I didn't feel like I belonged. Even my clothes felt wrong. And my reactions and responses felt constantly misplaced. Basically I was a house of cards until I started to rebuild, and my insides caught up with the rest of me. It's tough - but try not to get too discouraged. So much of what you're feeling is temporary, and it will get better. Talking about it sure helps.
2Tabbies - I empathize with you seeing a new counsellor. Bad therapy is such a huge waste of time and energy. I really hope that the new one is positive experience for you. I went through a couple myself ( upon the hospital's advise) and saw people that were of no help to me, except to make me feel hostile for asking such stupid quesitons. In retrospect I don't think I needed therapy anyway. I just think it was a brutally hard time and I needed that to be acknowledged. No matter how much support I had - I found that cancer and it's recovery to be a very lonely and difficult time.
Happy Halloween everyone. More importantly - I hope that everyone finds some calm as you continue to heal. (or chocolate). Take care,
Janet
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Wow---I wish there was a magic wand I could wave over all of us... I don't know how long you have been on Letrozole, but if that is the only AI you have tried, you might ask your MO to let you do a two week wash out and then try the Arimidex. (Anastrazole) I say this because I took the Arimidex with no problem for a year--then my cholesterol elevated, so the MO tried to move me to the Letrozole and I felt like 104 after 4 days and I switched right back to my Arimidex. We each react differently to these two drugs. You may get some relief by switching. Those of us who take the Arimidex (Anastrazole) find that the generic made by TEVA has the fewer side effects. I suspect the fillers are to blame. Lactose is a big filler in the other generic brands.
I applaud all of you who have families and small children and work full time. Fortunately, I had retired before I was diagnosed, and as a single woman, I didn't have the stress and demands of family and work. The trade off of not having a close support network was shitty.
Even so, I have adopted a whole new attitude post -cancer. I do the things that I can, when I can and folks will just have to get over it If the house is cluttered, or I miss an event, etc. I forget stuff all the time....no matter if I have written it down... I find a lot of comfort in various threads here. Thank you BC.ORG!
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Just an update to my pneumonia....its on my right side same as my BC..apparently your lung can get hit by a bit of rads making pneumonia more prone and it takes longer to heal. I didn't even make that connection...rads truly is the gift that keeps on giving. I also learned from my Doc a new slang....Tamo Tail which describes the tailbone pain I've been having...some people resort to sitting on donut pillows. He also reminded me that I will be on tamoxifen for another 9 yrs. I seriously just thought I was out of shape. That is my vent for tonight...and tomorrow is a new day
I am off to enjoy the extra hour of sleep daylight savings time will bring tonight. Thank you to all for your posts and the comraderie this site brings!
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