Why was I stronger DURING treatment than I am now?
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JJ: I had radiation, and when I finished, I took a couple of weeks out of work. My body and mind was exhausted due to treatment and travel to and fro. If possible, try to rest as much as possible or return part-time for a bit. Our bodies can only take so much! Lis
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I went back to my family Dr today to get those dreaded work forms filled in. I will officially be back to work on June 15th but only part time and gradually work my way up. I feel like I've ran a race with all of this and now I'm at the finish line and just want to collapse. I also feel like since I'm home I should have a spotless house and a great dinner every day. This afternoon the sun was shining so I grabbed my book and read for 3 hours. I'm going to take the next few weeks and try and do nothing. I reallyhad no idea the side effects of rads before I jumped in...
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Bosom, I feel this way too, although I have my good days and bad. I had thought it was just from chemo but I was recently diagnosed with diabetes! Then there is the Arrimidex.
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The lady radiologist oncologist said I was a boring patient. Im in the middle of Radiation . Yes Im fatigued. The empathy shown by these DOCTORS....I can just feel the burning warmth and LOVE in my breast from their HI-TECH machine.
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TimbultuI did not have chemo, only surgeries and rads and now Aromasin. Some days I wake up tired. Today was one of them. DH knows it as soon as he looks at me. I worked all day, I fought it all day and I lost the fight after yoga. I started crying and freaked out my fellow yogi's.
Thankfully its bc class and all the women have done it at one time or other.
Soon its bath and bed for me.
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Raider, I hope you're feeling better today. I have many days when I feel like weeping all day long. I'm more mentally tired than physically.
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Hi Raider and 2Tabbies .. same here. Today hasn't been very good. I really think the AI's we're on could be playing a part, along with the rest of it. Sleeping at night isn't going well here, either. I turn the lights off, but can't shut my mind off.
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kitty, I sleep ok once I get past the hot flashes that inevitably start as soon as I go to bed. For me, the culprit is Tamoxifen for both the hot flashes and mood swings. Tamoxifen and just lack of estrogen in general.
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me too with all these issues, I feel like I have another UTI. I was rx'd a small amount of oestrogen (pessary) but at a 100% er positive - I am not so sure about this and it is still unopened. I have been reassured by gynae and bs that this is perfectly safe.
The hot flashes are so much worse in the summer, I feel it particularly under my chin! My bs advice was to wear cotton clothing.
I feel like an old woman.
1.38 here and I can't sleep,
I hope everyone has a nice weekend.
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Radiergirl - I couldn't help chuckling at your last post. While I'm very empathetic towards what you are going through (and wouldn't wish it on anyone) I'd like to know what it means to freak out on yogis. There've been many times where I've yelled at them in my head, or walked out of a class, and I've always felt like I'm one 'Om' away from freaking out. I hope you're feeling better.
By the way - I want to design a T-shirt that says 'Namaste' on the front. And on the back it will say 'I'm not moving my mat'. Nothing pisses me off more than someone rushing into class after its started, then asking you to push over, and compromising what was once a very calm and roomy spot.
JJOntario - Do nothing for as long as you can. Radiation beat the sh*t out of you, and your body desperately needs to rebuild. Eat lots of protein, read your books, and stop cleaning your house. Don't ever feel like your not doing enough, or that you need to do more. You need this time to replenish your healthy cells and to give your body a break. Cancer is a job - and the most important job requirement is to heal fully and completely. Don't be too impatient to pick up where you left off - you likely need more rest than you think.
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Janet_M- I just laughed and cried at what you wrote. Funny and eloquent. Everything spot on.
Katy
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Wintersocks, I think one of the things that pisses me off the most is the stupid, trivial advice we get from the "professionals." Wear cotton clothing?! Seriously?! Like you don't know how to dress in the summer, and as if it's going to make one whit of difference when the real power surges hit. I know the only thing that helps me clothing-wise is to get as close to naked as possible. Even there, there'd better be at least a fan around to help. Good grief. I feel the same way when the advice I get for my trashed sex life is to take a bubble bath or go away for a relaxing weekend. If they don't have any real ideas that will help, then I wish they'd just say so.
Janet, I literally did laugh out loud at your t-shirt idea. Love it! Very good advice on recovering from radiation therapy too. You're right. Having cancer is a job.
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Thanks Everyone....I'm so bloody full of anxiety about going back to work. I know Raidergirl freaked out at yoga....I'm afraid of doing that at work. I'm in a very Corporate environment....I just hope I can paint the smile on my face. My job has also changed since I left....it's just a mess and I dont care about as much as I thought I did but it pays well and I'm up to 5 wks vacation...making it really impossible to walk away.
On another frustrating topic...I had someone ask me yesterday how I managed chemo..when I said I didn't need chemo they responded that I was lucky. I am lucky...I totally feel for any person that has go through losing their hair, feeling sick...I am thankful but at the same time I was also angry at her assumption. If another BC patient had said it I wouldn't have thought twice...but her commented burned me. It's going to be hard to go to work and deal with comments. I already have my back up. Maybe a t-shirt that says "Can you guess which one it was?" Sorry...that's probably not funny...but I find it's the first place people look at me...or maybe it's the tamoxifen causing me to think that!! OMG. What a bumpy ride this whole thing is!!!
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BB, I know it does. I try not to be angry and bitter, but I think I am. I keep thinking what will make it right for me to not feel this way? I think, as I have said before it's not him, it's the destruction of the 'family' I had envisaged. Also being here alone on A Sat night isn't thrilling either, yet I cannot be bothered to even contemplate a relationship. It's much too exhausting.I am seriously thinking about getting a hound! I just have to make sure that looking after a dog doesn't exhaust me too much.
Hey, I thought you had a budding relationship happening??
2tabbies, yes, I know, it's not as If I walked in with a fur coat on! I really don't think that cotton clothing helps too much. I find the best thing is those fine water sprays in a can. I put it in the fridge and spray liberally when I feel like I am being boiled. I take one out with me too, when it's very hot, although here in Britain that's not usually too much of a problem. I have had these flashes way before bc, I wonder when they will stop. I am actually having one now!
My sister when her sex life was causing problems was advised candles, lingerie, laid back music, massage. She is divorced now!
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Get an older dog, they are so often overlooked and so grateful, I have been involved in animal rescue for years
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2Tabbies
I took an Ambein just to be sure I rested. Thank you. I think it was
a combination of mental and physical fatigue. I keep asking DH when
will he gt rich so I can stop working . He laughs and says that the
more successful he is the more he need me at the business so I can
just forget the lady of leisure lifestyle….crap!
Kittsister
I have no doubt that AIs are the culprits. Since estrogen is the feel
good hormone that gives women energy, and nice skin, hair. Strong
bones, healthy circulatory systems, healthy joints………....
Surely estrogen depletion has to to the opposite effect.
I received an Info-email for the Onc Center. Tips for coping with
AI's
Side Effect : Dizziness and fatigue Tip: Avoid driving or
operating machinery
How the fuc is that a tip to cope?
A friend endocrinologist told me that if he saw a patient with the
non-existent estrogen levels of a BC patient on AIs, he would be
extremely concerned on the negative effects on the body in general as
well as mental well being. Non-existent is not normal.
Wintersocks
In the beginning I had super-sonic hot flashes and sweats. The MO
suggested stupid things like cotton clothing and ice water (so I
could pour it over his head perhaps?) Anyway, one day in complete
desperation of fatigue, heat, sweats, insomnia I called the MO office
and used these exact words.
“I cant live like this. If you cant help me I am driving off the
bridge.”
He called back in like 10 minutes and Rx'd 40 mg of Megace. The hot
flashes/sweats stopped in 7 days which then meant I could sleep too.
Not to mention the cranky factor was hugely reduced.
PS: I didn't really mean I would drive off the bridge. I wouldn’t
do that to my sexy car.
Janet M
I gotta get that T shirt. Freak out on fellow yogi is the timing of
breaking out in uncontrollable sobs as a response to Nameste. The
regulars rushed out of the room , the bc ladies rushed toward me.0 -
JJ OntarioI don't want to correct you ( but I will, LOL) My nurse navigator- whom I swear is an angel disguised in scrubs - explained to me that its not exactly that some patients don't need chemo. Its that they wont benefit from it as much as another patient with different stats . Ultimately the choice is the patients even if chemo would decrease the recurrence rate by just 1%. It is your life and your 1%.
The recurrence rate would have gone down another 4% for me but I opt not to anyway.
Interesting enough some patients who undergo chemo end up with statistically a lower percentage of recurrence then a patients that would not benefit from chemo.
So , need and benefit is not the same.
Anyway, with respect to my bc sisters who endured chemo. ( I bow in awe to all of you). When someone tells me I am lucky I want to inform them that that I have been stabbed, sliced, scooped, scarred , burned and now poisoned for the next 5 + years. How does that make me lucky?
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I can back up RaiderGirl on the no chemo thing. After surgery I was all psyched up for chemo, then my scans showed up a couple of tiny bone mets in my hip. I was suddenly told that chemo wouldn't save me, that I was incurable, and put on Tamoxifen instead. I was not given the "choice" to have chemo - that option was taken away from me.
I most certainly do not feel "lucky" that I didn't have chemo. Given the option of chemo or metastatic cancer, I would have gone for chemo any day.
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RaiderGirl and Suems...thank you so much for your posts...(you can correct me anytime). My MO said that based on my oncotype chemo could cause more harm than good. He never went into statistics..It seems that it's only here that people get it. The girl I was talking to somehow implied there was a "good" kind of cancer and I would trade anything to go back to the trusting invincible person I was. I find that BC has marked a new threshold in my life (Am I the only one who looks at pictures and thinks that was before BC ...or after)
Still working on getting enough rest ...we are moving in 6 wks and there is so much to friggen do. On top of BC life is just too insane (we just bought and moved into our current house in January...we found the new one when house hunting with my SIL...spanking new with no renovations needed) we are almost too embarrassed to admit we are moving again as a lot of our friends haven't even seen this place yet. I'm homesick for my original house....and I just want/crave a bit of routine ...
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i have missed a few days & a lot has happened on here.
Jjontario- the whole "luck" thing pisses me off. Especially when other people who don't have cancer tell me I am lucky. I am not saying I don't try to keep a positive attitude...but I don't really find having cancer lucky. I try to remind myself I am lucky to have access to treatment & good doctors. It seems you are about my age and about a year behind me in this mess.
Raider & Winter socks...my hot flashes were insane after ovary removal. I had them during chemo, but they were so intense after the ovaries I went on Effexxor. I was already on gabbapentin for my kidney. That really seems to have helped.
Janet- I have been working Namasre Bitches & probably need a T-shirt. It captures my desire for the positive calm and the hair trigger irritability. So far I haven't made the shirt.
I got my discipline from work in the mail yesterday. F*ing cowards. Couldn't even call me. I got a verbal warning for being sarcastic. If you can't tell, it makes me mad.
On the lick thing...I also don't like people to say at least I am getting a free boob job. It isn't free. Not by a long shot...not emotionally, physically or financially. I know I don't need to convince you all, but apparently that one bothers me more than I thought.
Have a good day. My garden pots that are supposed to be giving me peace are flourishing.
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JJOntario - Dealing with the comments can be really hard. Especially when you're transitioning back into work as your new and improved self. I hadn't told my colleagues why I'd been off for so long - and when I came back they said how relaxed I looked. And 'it must be nice'. My go-to response in my head was, F*ck Off. But I usually just plastered on a smile and let them think what they wanted. But for those that did know want I went through - and then said who lucky I was for a free tummy tuck - I had to correct them.
Winter - I second what Lily said. Go for an older dog. They will be so grateful and loving, and you will love it. Just know what you want for a pet before you get one - and then go for it. There are so many dogs that are east to take care of, and just want a place to be cozy. I think a dog would be lucky to be adopted by you.
Raidergirl - You just summed up so much of the emotions surrounding BC. Some people rush towards you and some people run away.
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Winter, I will also agree about getting an older dog. I had to put my beloved black lab Rhody to sleep while I was in the middle of chemo, I was devastated. Hubby said we should not get another dog while I was still so sick, we couldn't take care of me and raise a puppy at the same time. A few months after I finished treatment an opportunity came along to adopt an almost 6-year old yellow lab whose mom had to move and could not keep her. Any other time I would have said no (and hubby would too) but something told us that we needed to do this. It's a long story full of amazing signs that we should do this, so Mr. "We Don't Need Another Dog" drove 13 hours to Myrtle Beach to get her. And she is truly an angel! Getting any pet is a big commitment but the unconditional love you get and can give to the right dog makes your heart whole again, which is so important after all we have been through.
Martha
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Well I am even more fed up now, in midst of my appointments collecting test results etc, blood tests show I still have Epstein Barr,just been 9 months that´s all of constantly feling exhausted, on top of that I have strange sounds on one lung so was sent for X ray which shows something and so now I need to have more tests..............and although MRI says no lumps I can feel numerous lumps on my chest area where there was once a breast, anyone could feel them no imagination needed, how can that be? They keep changing and grow and reduce on a whim............
This forum says "Moving Beyond Cancer" - well do we actually ever do that? I am so weary.............it just seems never ending
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oh Lily! That sounds very scary. I'm glad you are getting checked out and over.
Very sorry to add EB to the list. You need a break! To answer your question, I often wonder myself if we can ever truly move on from all of this. You are in my thoughts tonight.
Martha- I just wanted to say how sorry I am for the loss of your beloved Rhody. I can't comprehend a worse loss at a worse time. I would love to hear what sounds like a magical story of your new addition. Not a substitute, I know. But sometimes, life just points the way. I'm glad it did for you now. You deserved it.
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hi everyone. Thanks for your honesty and warmth. I identify with so much of what you're sharing. I feel almost too depressed and fatigued even to share what's going on for me right now. I'm tired, overwhelmed, scared, and angry. I'm shocked that I have been done with chemo for two years and still feel so bad. I'm taking three diff antidepressants and they're not working. I'm not working either. Too tired and foggy.
My husband has chronic leukemia and started chemo last month. It's retraumatizing me! His care is so much better Than mine was -- I feel physical pain from my emotions.
Still in my Jammie's, trying to figure out how to convince my friend to go to lunch with me rather than walk our dogs together in the heat. I'm too tired and sore all the time.
I went for a job interview yesterday (it was so tiring, I spent the rest of the day in bed) and the sweat was literally running down my face throughout the interview. I've gained 30 pounds from the meds, and feel like crap.
Thanks for this safe and loving place to share. You all are my heroes.
Love, Katie
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Thank you for all these posts. You guys all make me feel that I'm not alone...with my anxiety and my worries. I go back to work next week and I'm really gut wrenching dreading it. I use to love it...but through all of this I have "hibernated" and the quiet is soothing. I don't know if I can go back to loud and hectic...putting in time and waiting for the weekends. We have a good life but we need my income (my youngest DD is starting her 2nd yr of university and it bloody well costs a fortune!!) That coupled with moving in 6 wks is just hard. My DH has been really good for the most part but I don't think he truly gets how stressed I am and the more he doesn't get ...itjust pushes me away. Sometimes I want to run back to bed, pull up the covers and not come out.
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I agree with you all....I am still so tired and never feel refreshed. I was diagnosed with EB in 2012, and then in May I was diagnosed with Cushings disease - another draining experience. There was tumor on my left adrenal gland so on May 4th, I had to undergo another surgery to remove both tumor and gland. Following surgery, the Dr put me on steroids and my 2nd week in. (Memorial Day weekend) I had a serious psychotic reaction.....all alone. I waited until Tuesday to call Dr. .... Too much sh&t for one person. I will say my lovely shipoo Bella was by my side!
Thank you for all the support in these forums!
LiLi
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LiLi- I'm so sorry. Way too much for one person. And steroids and I don't get along either. I'm bipolar. Bad things happen.Having that experience alone...,, I can't imagine. Big hug coming your way.
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Not to compare but my sweet little dog got steroid psychosis when he was given prednisone for his allergies. He was afraid of his dog dish and me Scary stuff
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Raider, if the hot flashes get too bad this summer, I am so going to call my MO's office and tell them I'm going to drive off the bridge if they don't help me. Summer sucks. My MO had the gall to say to me once that "women have been going through menopause for millennia." Yeah, and they used to lock them up in asylums too. Men have been having erectile dysfunction for millennia too, but we address that as a serious concern unlike hot flashes. Btw, no woman who has this stupid disease is lucky no matter what treatments they've had or not had.
JJ, you aren't the only one who looks at pictures and thinks, "That was before breast cancer." I can't pull out my driver's license without thinking that. The photo was taken a couple months before I was diagnosed. I had shoulder length wavy hair that although graying still had a lot of brown. Now I have short curly completely gray hair. Everyone compliments me on it so I guess I should be grateful for it. But it's just one of the major changes to my body. I'm sorry you're so stressed. I hear you about not wanting to go back to work and be putting in time and waiting for the weekend. I'm in that exact spot, but at least I'm not about to move also.
Smart, I'm so sorry you got a warning from work. Why is it we aren't allowed to be human in the workplace anymore. Regarding the "free boob job," I just ran across this article. It's pretty good.
Lily, I'm sorry about the Epstein-Barr, the lumps you can feel and all the rest of it. It does seem never ending.
Bosum, the last time I saw my MO, he commented that I was "nearly 2 years" out. Not really. That was May, and 2 years will be in August if we use the surgery date. I wish I'd asked him what the big deal was about 2 years since he'd told me that will my type of bc (ILC, ER+, PR+), there's always a chance it can come back. Yes, the risk goes down with time, but it never goes away completely. So, 2 years? Who cares. I also have an incurable form of lymphoma so I'll never be "cancer free." It might not kill me, but again, it will always be there. Do I sound angry? Imagine that.
BeHereNow, I'm so sorry you still feel so bad, and have a sick hubby as well. Hugs! Hang in there as best you can. You aren't alone.
LiLi, you've been through major hell recently. I hope it gets better. I'm glad you at least have your little dog with you. My kitties are a big source of my comfort.
This has gotten to be a long post, but I wanted to catch up on all of you from the last couple of days. This thread has been busy. I guess that tells us something right there.
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