Why was I stronger DURING treatment than I am now?
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So glad I made you laugh!
What you say is true. When I talk about the pills I get a strange reaction. Since no one I know has experienced this, they just don't get it. And I've often thought of PMS too. Everyone acknowledges that becasue they've all been through it. Some more than others. I always had a hard time with it, which may explain my difficulty with Arrimidex.
I get a lot of people telling me "so just don't take it". I must know a lot of idiots! But they have a subtle impact and after awhile I begin it wonder.... life is too short to spend it this way. But I am suggestible and have to watch it.
I'm just hoping they come up with another medication soon!
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Question for everyone: how have your significant others handled your long-term health issues? My husband has become less and less supportive as the fatigue has dragged on. He literally doesn't want to hear it anymore...he doesn't want me to talk about my health at all.
I'm sad that I've struggled really hard to get better, but my husband gives me no credit for that. He just sees how my illness is inconvenient to him, and is long past caring if it's difficult for me.
Started to write more but it was turning into a rant...and I don't think it's healthy for me to go there.
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Well, I'm sick of being sick too!. I hear myself and I'm disgusted. My husband was 1000% behind me at the beginning. Now he avoids me. But that's really nothing new. It's hard to concentrate on other things when you have so many physical problems. And it scares me.
Just this morning I woke up having to go to the bathroom. Nothing odd there. But my daughter was taking a shower in one bathroom and my husband in another. Since chemo, I can't hold it. So for the first time, in desperation, I went out into the back yard in my nightgown and took care of it. Things like this are so discouraging. But I won't tell anyone for obvious reasons. I don't tell 90% of the things I go through but even the 10% is enough to make me sound like a whiner.
Do you find yourself worried about others a lot? I feel so lousy so often that I get worried about my husband. How can he work all day long? He's on his feet? He must feel awful. But I ask and he says he's fine. Feeling fine is so foreign to me now that it's getting hard to imagine what that must feel like.
Well, I let it all out here for sure!
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As I sit here and read what you wonderfully strong and brave women have written and I realize I'm not alone, that in its self is relieving. Knowing I'm not going nuts, or making things up. I'm so tired of being tired and all things aches and other side effects from that little white pill. And I get it, people don't want to hear that almost 2 years later I'm not the way I was before all the surgeries and the chemo. But believe me I more than anybody want to be the way I was,but I'm not. So for me, no I can't work a full day without coming home and taking a nap, no I can't work out in the yard all day or do the home improvements I so use to love to do. This is now my new normal. And I wish people would just stop with the "I know so-n-so and she had breast cancer and she running marathons" I happy for her but STOP COMPARING us were not the same or that maybeif if I would have chosen a different course of treatment I would be feeling so bad. Sorry I'll get off my soap box and be quite.
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Cfdr - My significant is Mr Crabbypants. I was diagnosed two years ago, and just had my bilateral DIEP last month. For the first four weeks following the surgery he was golden - grocery shopping, pet care, cleaning, chauffeuring - but now he's about to explode. He's had most of the summer off and said that all he's been doing is running errands.
Don't know whether to stroke him a bit and tell him how wonderful he is, or to tell him to suck it up. Firstly, I've been quietly doing errands forever and secondly, if he'd had to go through 1/8 of the pain I've experienced over the last two years he'd be sitting in the corner wearing a diaper and sucking his thumb.
There've been periods where he's been truly amazing- but I think he's had enough. Suddenly he needs everything back to normal. On top of hundreds of stitches - I also have a bad cough and have developed laryngitis - but iI don't think he's noticed. Men can be such babies.0 -
Oh trouble! You said it! How stupid can people be? One friend told me that HER friend had both breasts removed and refused chemo and "I think she was very smart!" UGH!
Then another friend told me that I should just take an advil and carry on. That ALL of HER friends are doing just great after chemo.."honest".
What ARE they thinking??? I stopped talking to one and wrote a rant to the other. The second apologized so I thought all would be well. But no. She recently had a bout with gout. The pills made her depressed and gain weight so she very triumphantly told me "I stopped taking them!" She was on them a week.
I said "Please, don't tell me you are comparing a resolved case of gout with breast cancer?"
But I could tell, she thinks she's smarter, better, stronger, etc. because "she" got off of pills that were hurting her.
I know she's an idiot but it still makes me feel bad.
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LOL, Janet! Well said! I spend most days in a running conversation in my head...how to handle him. Stroke him, praise him for the good, or rant. Lay it out there on the line, or ignore it. It's exhausting. I wish there was a "husband whisperer" who could tell me how to tame him. LOL I'm seeing a counselor but all he does is agree with me that he's awful!
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My lovely friends,
Just dropping by intending to write a long piece and see how you all are. but I am finding myself to tired to think straight.
I just want to thank-you all for staying with me and your kindness since my latest medical trauma.
I do really think of you as a great support and real friends.
Lily55, the text you sent was just so sweet, I was at a particularly low ebb this morning. Thank-you.
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wintersocks, we are definitely rooting for you!
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cdfr,
I really understand what you are saying here about spousal carer cancer fatigue. I think thisis the way my relationship might be headed. more so since I have to have further evaluation for an ovarian mass.
it goes like this for me: Last Weds I had a gynae consult. It was my OH's intention to accompany me to this as he has on all my other significant BC apointments. Anyhow to the point; the car had broken down. This was not my local hospital and I had to have 3 buses to get there. he waited to see if the car might be fixed and followed on by same buses. Following a difficult consult on my own as he didn't make good time. my OH became silent and moody and claimed that being on the buses was 'horrendous' and left him feeling 'sick'. WTF??? He sulked all the way back.
JanetM - I am having the same dilemmna - In fact I have tried both methods just this weekend! The 'You are so wonderful' and the 'I will not tolerate this treatment' - I have always given him the option to get out. Now I want to say 'Get out or quit whinging' - but maybe I am being unfair?
You are right men are such babies. They really are. I remember my ex being the same 'Oh I am too tired to get up for those babies'.
I do hope your laryngitus clears up soon. You are probably very run down.....
Timbuktu, you are so right it is completely exhausting. i don't live with mine so at least I get a break. But I do feel that this w/e is really make or break. How much can we realistically expect from them?
My son appears to be living with his Dad too again. I miss him and feel a bit bereft. It's just me and Horace this weekend.
I have decided to see my GP and Breast Nurse to get some help. I am having times when I feel unable to cope with it all. I can't stop crying.
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So sorry Winter! We really need support at times like these. All I can think is that people really don't understand how much a kind word means. And one day they will understand but it will be too late for us.
Next time, take a taxi!!!! Together!!!!
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I read a very helpful book called "After the Cure" about BC survivors like us...the ones that are NOT out running marathons. It discusses the pressure to be a BC Survivor Poster Girl, and how that Komen-fueled message gives non-sufferers the impression that all of us are healthier than ever. It also talks about the STUPID things that people say. On the one hand the book was very sobering, even depressing; on the other hand, I was very comforted to know that "it's not just me"...in fact there are a fairly high percentage of women who never go back to work full-time after treatment.
My husband has been wonderful as long as it is logistical...taking me to an appointment, stopping at the store, etc. I can understand how he would be burned out on doing more than his share of chores, cooking, etc. What I have difficulty understanding is how he can't handle anything supporting me emotionally. He despaired once that he "can't do anything more to help me", and I told him that he could sit beside me and put his arm around me. He looked at me like I asked him to hike naked across Antarctica. And he made it clear in therapy that he is DONE listening to me talk about any health issues.
He even said "Even if you get better it'll just be something else. Before cancer you had migraines". How is that for sympathy? I suffered from menstruation to menopause with horrible headaches, and now that I have had cancer, too, I must just be some hypocondriac that's just looking for something to whine about.
I don't know why I would expect anything different. His mother has health issues, including very bad arthritis, to the point where she's had multiple joint replacements. His attitude towards his mother has been contemptuous, skeptical, judgemental, impatient...but never once has he expressed the slightest sympathy for the fact that she is in constant pain. I don't know why I expect he would treat me any differently.
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So true. My husband hasn't spoken to his mother in over 20 years. Some men have no compassion. How to live with it is the problem I just wrote my husband a long email about how i can't live with him or without him. I've been so uhappy with him and I feel the fool for having stuck by him for decades Yet I can't give up hope! Its 'the hope that hurts so much .
Thanks for the book recommendation. I'm writing it down and I will get it.
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I just thought of a joke. "Men, can't live with them...can't kill them!"
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Timbuktu
hee hee!! - like it!
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I hear what you ladies are saying. My good friend divorced her husband after her stage 3 cancer. She was raising a young boy and newborn twins at the time. He was so unhelpful and made her illness into a pity party for himself. She is better off since he was an ass by that point. I'm into my guy by almost 30 years now. He cannot relate to anything physical either. Heck, he doesn't even want to listen to day to day stuff. He is very closed off and I am just glad I have my lady friends.
Men just shove it down inside and don't talk. They don't talk about their crap and they certainly don't want to hear about ours. My 15 year old son has more empathy and will talk far more about "stuff." I can't change my husband, but I can a least work on the next generation :-). 30 years is a lot of time and I do wonder how couples do it. I see older couples kissing, holding hands and generally looking happy. Maybe they are newlyweds and I'm thinking they are long timers! :-)
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I think I am pretty lucky. My husband is very supportive; however, I can't say the same of other family members and friends. At first it was "what can we do to help you" and now I get a look like "does she have another problem". I was watching the news last night and they had a segment on about certain medical conditions that were being over treated. One was IDC breast cancer. Really, until a person hears "you have breast cancer" they don't know how they will handle it. Also mine was caught so early that I was able to have internal radiation and if I had external my skin would have been eaten up. I have a condition called "dermatomyositis" that causes skin rashes, etc. They just put me on a new medicine Methotrexate to try to get my skin rash under control and keep my muscles from getting worse. Why do people want to put their two cents in when they haven't had to face cancer?
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I think that when someone has never had a health crisis, or an ongoing chronic illness, it is easy for them to believe that they would handle it better than those of us who've been through it. I've had migraines so severe and intractable that friends dragged me to the hospital because they were terrified to see anyone in so much pain. Yet others have said "What's the big deal? If I get a headache I take a couple of aspirin and it goes away", without for a moment thinking that a severe migraine and their little headache were like comparing a tornado with a cool breeze.
It's tempting for people to say "It's all in her head" because then it feels like they have control...it's not in THEIR well-controlled head, and nothing will happen like a lightning strike out of the blue that will give them problems they can't control with their great attitude and a couple of aspirin. Of course that's not the case, but until it happens to them, they can continue in that fantasy.
Before I had cancer, I didn't know a damn thing about long-term fatigue, lung damage from radiation, lymphedema, costochondritis, chemo brain, etc. And I assume that most people I know are just as ignorant. So it comes as a surprise to them when it's a year or two out and we're still not "better".
OTOH, when people ask how I'm doing, I just say "I'm still having issues with fatigue" and leave it at that. Most people have been sympathetic, like "well of course you are after what you've been through!". Ironically it's my DH who is the least sympathetic, but my ongoing fatigue also affects him more than it does my friends. He has to deal with the decrease in income, the undone chores, having to pace himself to my snail's walking pace, the lack of sex drive, the go-without-me-I'm-too-tired week after week. I just wish he'd realize that I have to deal with all of those, PLUS feeling like crap.
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Since Arimidex is blocking my estrogen I have had a lot of trouble with anxiety and get irriatated very easy. I am also so tired all the time. It is hard for me to tell what is causing what since I have the auto immune condition that can cause fatigue as well. Since my radiation my skin condition has really flared up and they have put me on Methotrexate and I know it can cause fatigue. I work so now I am struggling to get through the day. I am glad I am working so I don't focus on my problems. When I get home I don't do much. My husband doesn't complain (except for my lack of sex drive).
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cfdr, thanks for sharing. What you describe is me, exactly, In spite of all that i've read on these threads I've never read it described so well. It's crazy but part of me does blame myself. I never realized that until just now, reading about how you walk so slowly, etc. Without realizing it I do think I'm "doing it wrong" and maybe that's why it hurts so much when people say those thing s.
I signed up for a fitness program and I meet my trainer today. I've told him about all of my problems and he says we'll work with it, I want to do all I can to improve but at the same time I'm wondering if it isn't wishful thinking. I'm just not the same. I'm so nervous about the meeting today. But I have to try something, anything.
It really helps to know that you too have the same physical problems. That I'm not just being lazy or a whiner.. I never would have imagined it was like this.
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It's interesting that we actually catch ourselves wondering if we are lazy or whining. It's sad really. Our bodies have been and "are going through" so much. I realized, too, that alot of what we are feeling didn't just "happen" one morning, but most of these aches and side effects came on slowly and we have just become so used to them. I know some friends mean well (don't they?) but when they ask, "how ARE you?". Oh, that question is soooooooo loaded for us! If I mention the stiffness and pain when I get up in the morning, they chime in..."me too; doesn't aging suck?" ~~ grrrrrrr, if they felt what I feel some mornings painfully walking across my bedroom or lifting my leg into a pair of pants, they would probably go to the emergency room! I am so glad I have you all to share with, who know exactly what I'm talking about!!
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I was just signing up for something at the gym, hope springs eternal. I was talking to the one in charge, asking about the rules for visitors. She told me and I instantly forgot and apologized and explained that I have no memory so would she mind repeating what she just said. She is about 25 and laughed and said "Oh I have no memory either". Yep, that's what they do. They try to make us feel better that way, but it works the opposite way. To coin a phrase, "they know not what they do". You have to forgive them.
Funny what you say about "how are you?" I teach ESL and one Russian student asked me if when someone says "how are you?" in America, do they really want to know? she said in Russia they do and you tell them but here they seem to say it and walk away. I told her, no they don't want to know. In America it means "hi". lol
But then, we were trying to give them examples of "small talk" to help them socialize. I told them that with anyone over 60 you just have to say "how are you?" and they will talk for the next hour!
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So funny ladies! I went to a back to school thing for my youngest this evening and a lot of people who knew what I went though were asking how I was. It is indeed loaded, but I will usually say "It definitely aged me." Sometimes they will say me too or we all need glasses at this age, blah, blah, blah.
I realize they mean well so I sometimes try to joke and say that it's either the chemo or the age, but I prefer to blame it on the chemo. The reality is that my body was in tip top shape and now with the abrupt menopause and everything else... well you guys know.
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One of the reasons I have been shy about socializing much post-treatment is because "How are you?" is such a loaded question. Along with the "You look great!" comments. Not that I ever mind anyone telling me I look great, but I know what they mean is "You don't look sick...and you have hair again, too!"
I don't launch into a list of my ills to anyone who asks how I am, but instead, I've overshared with my husband to the point where he doesn't want to hear it anymore. So I come here where people are much more understanding! It does help. I thank you all for listening to my occasional rant. I've vowed not to talk to my husband AT ALL about my health anymore...had to bite my tongue a couple of times this week when I wanted to tell him about an exercise clinical trial I'd heard about, or about how it's going getting accustomed to my new CPAP machine. But I keep my mouth shut.
"Lazy" and "whiner" seem to be the tags that many of us are afraid of...and that we put on ourselves. I guess it's a girl thang that it simply helps to talk...so I guess in that respect we are the whiny sex. I have a friend who is going through a tough time financially, and I am so happy to be an ear and a shoulder for her, in part because it's so refreshing to hear about someone's problems other than my own! And I know how helpful it is just to have someone listen to the thoughts rattling around in your head all day.
I'm guessing that at least of a few of you are (or were) very high-energy people before all of this happened. I realize that I beat myself up for being able to do so little, yet I know healthy people my age who don't do anything outside of their jobs other than watch TV. They never work an hour overtime, eat take-out food, hire a cleaning lady, don't socialize or go out much, and a walk around the block once a week constitutes exercise. If that were all I aspired to doing, I would probably have a lot fewer complaints!
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Well, I'm feeling a bit more positive today. I don't know that we're "whiners", more like communicators. And thinkers. I was thinking...husbands of women with BC need their own group. Or...maybe they should read these threads! I think I might ask my husband to read some of it. He only knows me. I think seeing that this is par for the course might open his eyes a bit. Not sure how to get him to sit down and read, though. But I'm going to try!
BTW, I've never been high energy. But this is ridiculous!
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We need to think about it logically - women in their 80´s naturally take life easy and no one comments as they are old, well our bodies have as much oestrogen in as they have so why expect ourselves to be so busy? Many of us who got cancer were used to being on the high side of oestrogen anyway......so its an even bigger blow, and there is a real physiological explanation for it.....we forget that, I am not saying I am happy about it as I HATE it, and hate feeling way I do.......if things carry on as they are on this new drug (exemestane instead of letrozole) then I will seriouls yinvest in going totally alternative but that requires more nerve than I have right now.......and while I am going to have surgery that lowers immunity I want some safeguard, even if only in my head!!!
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Excellent point Lily! Yes, we have to readjust our expectations of ourselves. And yes, we had more estrogen than most so we feel the lack. Good thinking. I guess the problem is our spirit is willing but the body isn't. But who knows, maybe 80 year olds are just as frustrated and upset at their diminished capacities. I do feel my body is 80. I know it is because I have friends in their 70's and we walk at the same pace! lol
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Why do you say we had more estrogen than most? I have never heard that before.
Timbuktu, I would bet that there are support groups for husbands of BC patients/survivors, but I also bet that most men would not go to them. I don't think my husband even considers that he is experiencing caregiver burnout, but that's exactly what is happening. But I guess it makes him feel less individual to think that what he's going through is actually quite typical. We went to the counselor that the breast cancer clinic has available to patients and caregivers, and he said that it is very common a year or so out, like I am, for the woman to still be fatigued and the the man to be fed up with it. I actually find it comforting to know that what I'm experiencing is typical; that means that there are lots of role models out there who have gone on ahead and figured out how to deal with this. It makes me feel a lot less alone in my struggle.
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I never heard anyone say that we had more estrogen before to start. But some of the risk factors imply that. I started my period at 11 and didn't go through menopause until I was 59. I'm overweight, which means more estrogen. I did not excercize. All of those increase the risk, so I would assume that I had more estrogen than most.
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Many of us had fibroids and other symptoms of oestrogen dominance, that is why i said it
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