Why was I stronger DURING treatment than I am now?
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Rock - You have plenty of time. I have 10 years on you. I was way more in shape in my 50's than my 40's .. I just kept moving ... Biking, skiing, gym .. I go for a solid 8 Refused to buy a size up - not always pretty but it worked .. Still live that way . Now I just have to get back in shape after all this .. I like what you said .. There is no new normal... I want to be the same person... Just taking a while to see how it all comes together . Today I got to take the day off because it rained ( I work outdoors). It took me hours to do anything. Except for PT I spent most of the day reclining. My brain feels like it needs a total recharge , no focus at all ! Nothing.
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You are really early in the process. I'm 2 years down the line and still not "normal". They told me at Sloan that it takes a year to BEGIN to feel better after chemo, I found that reassurig as I thought I would snap back right away.
Some days are better than others but I do feel my strength slowly, slowly returning. The memory and mental clarity too. Still not there but better than a year ago. I think we have to be patient with ourselves. Not easy when you want to LIVE!
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I'd just like to remember what the heck I wanted to say to someone while I am standing there with some other thought in my head. I used to be able to juggle many thoughts, but now one will disappear if something else pops in there or someone starts to speak. I never had that before chemo.
Lenn, I do feel normal again. It's been two years and other then my tossed salad thoughts... I'm me. I've come to grips with my different body. I don't like it as much as before BC, but it could be worse. I've seen the pics on the internet. I also bike, ski and hike. Between 40 and 45 I was looking my best. I'm hoping I can drop a few and get back the old look, but at least I can use the BC as my excuse for a few years :-)
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What a great description of what goes on in my head. I used to be known for my great memory. But now it's exactly as you describe. It's a new experience and the best I can say about it is that it has humbled me and made me more compassionate towards people who have similar problems. I used to become impatient. Now I understand. It doesn't feel good at all!
Lately, however, I do notice that I am remembering better. I'm back to reminding my husband of all the things he's done over the years. things he has no memory of whatsoever! Sometimes it's better to forget!
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I avoided birth control pills most of my life because they were reputed to make migraines worse, and I had a TERRIBLE time with migraines. But when I started going through menopause, I had awful symptoms...mood swings like you wouldn't believe. So my doctor put me on low-dose birth control pills; I was on them for about 3 years. They did not make the migraines worse.
Post-menopause, my migraines got a lot better. Instead of imitrex, I could take ibuprofen. But once I started on letrozole, they have all but disappeared.My husband made a completely ignorant, moronic statement recently about migraines and cancer. He said that even when/if my fatigue is finally behind me, "It'll just be something else. After all, before you had cancer, you had all those migraines." Yes. I had a painful, debilitating, GENETIC neurological disorder, and then on top of that I got cancer, with all its lovely ongoing treatment side effects. How inconvenient for him to have to live with such a hypochondriac.
I have always been relatively healthy...good weight, physically active. In retrospect I could have eaten better; I thought I had a good diet but it's better now than it was. I have a sweet tooth and like my wine, those are my main two vices. I can't say I never smoked but didn't do so much or for very long. In addition to migraines, though, I had horrid menstrual cramps, and bad allergies, and developed mild asthma at age 33. All of these have an inflammatory component.
I have tried to make changes post BC but they haven't all "stuck". I wanted to exercise an hour a day, but whether it's because of chemo side effects or pernicious anemia, I find that if I overdo exercise I really pay for it, with days of fatigue. I have tried to meditate on and off, but have not stuck to a routine. And I find now, that my fatigue finally seems to be improving, that I am focused on trying to make up for lost time in my business and home, and am not making as much time for exercise and healthy cooking. I do eat more vegetables than I used to though, and eat fewer low fiber starches. My husband does a lot of the cooking, though, and he loves to cook a lot of beef and pork, sad to say.
The 6 months leading up to my diagnosis were some of the most stressful of my life. My mother was dying, and I was her primary caregiver. I am self-employed and had to borrow money from my sister to pay the bills, since so much of my time was spent caregiving. A month after my mother passed I was diagnosed.
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The effect of stress on BC...a few years before I got it BOTH my parents died within two months of each other, I was an only child and they were both on life support for months, My husband opted out. So those months and the following years were absolute HELL. I remember crying all night long and thinking "I'm going to make myself sick. No one can endure this much pain without getting sick." My marriage is VERY rocky so the stress is constant. I do believe this was part of it.
My husband and I are in therapy. Yesterday he tried to be nice and joined me in the bedroom for 15 minutes or so to see how I was doing. What could I say? For 15 minutes I told him how lousy I felt. I'm not much fun and part of it is physical and part is emotional. I'm wondering if your husband's lack of love and compassion could have triggered some of your migraines, My kids would get them after a hard day at school. I cannot imagine anyone witnessing someone with a migraine standing in judgement. But I should know better by now. People are capable of anything.
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Migraines are horrible. For some reason, a lot of people just don't get how bad they are/can be. I think a lot of people just think it's a bad headache. They don't realize how miserable one can be with a migraine. I didn't have one the entire time I was in treatment or for awhile after, but now I am getting them like clockwork. They are not severe, but bad enough to make me pretty miserable for a couple days a month.
I certainly hope someone is looking into the stress/bc connection. Cfdr and Tim...what you ladies went through just before diagnosis is a lot to bear. You probably didn't have time to work through all of that before being diagnosed and dealing with treatment and the after-effects. It's no wonder you are struggling at times. Be kind to yourselves. You deserve it.
cfdr...I know what you mean about making up for lost time when you start feeling better. I do the same thing and you're right...it makes things like exercise and a healthy diet take a back seat. I am hoping to get back into a regime when my kids go back to school. Although I'll probably come up with a different excuse then. Maybe we could all work together to support an exercise/healthy diet going forward. Wouldn't it be great if we found ourselves feeling better then?
Dunes...we haven't heard from you in awhile. How are you? How is the job going?
I wish everyone a peaceful and stress-free weekend.0 -
I have a new theory. How about taking a poll on marriage and cancer? My husband and I just hit 30 years together and our relationship is not anything I would like it to be. We've tried counseling a few times in the past, he has tried meds and I have taken meds, but it always goes back to the same bullshit. I am typically outgoing and a problem solver and he is child-like and unmotivated. I do have to say that things are different for him at work. Sometimes I wonder how he does it. He earns a great living and is well respected in his field, but once he's punched the time clock.... he is back to him.
Anytime I mention any ache or pain, I get a humph or complete ignore from him. My kids are much more empathetic and I am to them too. Hubby will walk by and say, "How's the tooth?" after my root canal and surgery, but god forbid he actualy stop to hear the answer. I'm not even a complainer, so I have many lady friends, my children and my mom. I talk with them and hubby is around for what? Sometimes I wonder.
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Rock, you made me laugh so! It's as though we're all dopplegangers. Are you saying that miserable marriages cause bc or bc causes miserable marriages? lol I think it can work either way!
Today is my 44th anniversary. I heard an inspirational talk on tv and I'm MAKING IT A GOOD DAY! Gritting my teeth but doing my best. I've been in counseling for a couple of months, he went with me for the first time Wed. I walked out of there so angry at him, if I had anywhere else to go I would not have gone home. He's been on Lexapro for years and I think it's stopped working. But we're still trying, what choice do we have? Well, what choice do I have? He has a career, and yes he's beloved at work. He had the income. I've raised our 3 kids. I feel a physical and emotional wreck while he could walk out of here and find someone else in a minute. Sometimes I think I stay with him out of spite! Why should he enjoy his golden years with someone else while I suffer alone? Might as well suffer with him!
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I am sure that there is definetly a stress connection with BC, my ex walked out on me and our 2 boys (he did it once before) and I took him back.
As someone said on here: 'I am going to make myself sick' with all the crying and stress of it all. That is what happenend to me. I have never been truly well since.
I don't think it is possible to suffer so much and not have major repercussions on the body. But of couse there is not only stress in the mix of bc but environment, genetics etc.
I can't understand why thy can't figure it out?? the whole cancer thing.
Or what I can do to feel truly well again, whilst I am waiting for yet another MRI report on my ovaries.
I feel truly weary.
Nice to see you all here tho, you keep me going.
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My migraines started when I was about 14 years old, five years before I met the man who would become my husband a few decades later. They have not been an issue for me since I started letrozole, and it's only in the last 7 months or so that my husband has started to resent my health. I've never felt like he was a factor in my migraines.
A lot of people look to life situations as a "cause" of migraines. Migraine is a hereditary neurological disorder, it is not caused by any life situations. That said, there are a number of things that can trigger migraines, stress being one of them. The most common migraine trigger of all is changes in the weather, so you can't really blame that on husbands or jobs or schools. One of my biggest triggers was fluourescent lights. I always went to work wearing a visor. I was once tossed out of jury duty because I told them that if I removed my hat in the courtroom as they requested, I would become too sick to serve within a couple of hours. I never had an increase in migraines from any emotional stressors, but I would get migraines from the stress of deadline pressure. And then, I'd get the migraine AFTER the deadline. Timbuktu, your kids getting the migraines after school is this pattern; it's called a "let-down headache". You get the pain not during the stressful event, but after it is done.
Seems to me that there are some forums on the boards here that are about stress and BC. I know that I've read that it can be a contributing factor. A lot of women had very stressful lives in the year or so leading up to diagnosis.
My marriage was much stronger before BC. He was OK during treatment, but as my symptoms dragged on a year and more after the end of treatment, he came very close to leaving me. He has even admitted that he had an affair last fall. We saw the counselor in the BC program a couple of times (in the last one he made the migraines/cancer comment). Things are going better now, but I fear what might happen if I have a recurrence, or simply another bout of fatigue.
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I have a friend who had thyroid cancer and then developed lupus. Her daughter became very depressed. They went for counseling. The counselor set out a chair for every member of the family and then a chair for the cancer and the lupus. He said that they were members of the family too. I told my husband this story yesterday because he believes that he was "there for me when needed" ie, during the intial treatment. I asked him if he really believed that I have not needed him in the past 2 years?
I think nothing is the same after a major illness and these issues have to be addressed rather than avoided. My husband, like many, withdraw and hide out. I can't imagine how painful that affair was. I feel like ...well I won't say what I feel like doing to him. My husband confided in a pretty woman student of his as retaliation and that was bad enough! Men are... censored.
You're right about the migraines. I have a good friend who goes around in sunglasses all day because light can trigger one. Obviously yours have something to do with hormones. My kids got theirs at puberty but they've out grown them now, than God!
Just as with everything else, they are hereditary. I've been under tremendous stress and only got one or two during menopause. Hormones. It's a horrible thing to go through. I had a routine with my kids. they'd come home, say they had a migraine, and go to bed with the shades drawn and the lights out. Then they'd come out moaning in pain and I'd try to help by giving them aspirin or aleve or something. Then they'd throw it up and feel better and go to sleep. They'd sleep for 16 hours straight and wake up fine. I'm so glad they have outgrown them! And I'm glad that letrazole has prevented them for you!
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My husband used to have migraines. His father and brother too. I learned the routine early. Cold compress, lights off, no talking. My son has only had one when he was about 10. I recognized it right away. Lights had to be off, needed the cool compress while he laid on the floor in the bathroom. After some time, he threw up and then rested. It was the scariest thing next to his 105+ temp when he was a baby. It is hereditary and I hope it was only that once. My daughter hasn't had one.
As for the husband deal, my hubby was starting to really check out right before BC. We've gone through many ups and downs over the years, but haven't killed each other yet. I recall really wanting a divorce before the diagnosis, but once I got sick, he grew up. He was there for me, took great care of the kids, etc. Even after BC he was good for a bit until I started to really fall apart. Now, he had been there before when I've had emotional break downs, but this last one was much harder for all of us. I think he was also depressed and that made it all the worse. He didn't do counseling as he should have, but he did take meds for awhile. Now that he is off of them, he is much harder to live with. I have many friends where I live and I have all my BCO support where he has nothing. He doesn't even use me for emotional support as he should. Oh well, therapy session over ;-).
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that's a great point! My husband has no one to bounce off of but me and he discounts whatever I say so he's basically on his own. Living out of his own head which is kind of distorted. He can rationalize anything. I'm willing to go to therapy with him forever, just so that he can have a reality check that will make an impact. Just one session and he's a different person! I'm not counting on it lasting.
Maybe this is why people need religious services, a weekly reminder of what's right and what's wrong. I think so many of us are just flying without a compass.
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Jim (my DH) has really stepped up to the plate since my diagnosis as well - and it's been really tough on him. He' been my chauffeur, shopper, dogwalker, caregiver. He's been at home with me for the last six weeks, making sure that I'm always okay. I do my best to let him know that I'm grateful, and try to cook his favorite meals. A few of my friends have called/written to thank him for all he's done and he was really grateful for the acknowledgment. I realize that being a caregiver is tough.
But - now that I'm really on the mend, he's developed a whole bunch of physical problems. I'm not even sure if they're authentic or not. He's a bit of a hypochondriac so I take everything with a grain of salt. Today he thinks he has a fever. I pointed out that he played golf yesterday, and has a hangover. But he insists he's sick. He's also got some pains in his legs and he's gone for an ultrasound, and to see several doctors. I believe that there's leg pain - and I make the right kind of soothing noises - but I can't begin to help someone through illness (real or imagined) if they don't do any work. The man hasn't exercised in 15 years! And he sits in front of the computer with his legs crossed at least six hours a day. Now he gets up, and he's stiff, so he thinks he has deep vein thrombosis. It's called middle-age, buddy (he's 47).
Anyway - I don't know what my point is. But I sympathize with everyone who is dealing with a man who is so different than them. When I deal with men I feel like I have to hold in all my energy. Girlfriends are easier. With Jim, I don't know if I should just be an ear for him, because he needs the attention. Or if I should stop being an enabler and tell him that unless he's proactive, I don't want to hear about it. I fell like such a bitch. He's been there for me all along, and I don't know how to give him what he needs. Also, I don't know if I want to. His hypochondria has always been an issue by the way. He once cancelled a family dinner because he thought he had SARS.
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Oh Janet,
Know I shouldn't laugh, but the SARS comment was just so funny!!
I burst out laughing whilst drinking tea!
hee hee, do recognise that syndrome as well .
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Speaking of husbands......34 years here. He was pretty good during surgery and treatment but at 3 weeks post 35 rad treatments with 7 boosts while running a demanding physical and stressful business full time and never missing a day, he thinks I should find a better way to deal with the fatigue than trying to keep the BS details of life to a minimum. I got the "you were a strong woman " before, you should find other ways to deal with it! Is that about right, ladies? No one REALLY wants to hear how you are feeling now. It is only 3 weeks!!!
Right now, I barely have enough energy to work ( I HAVE to slow that down) and get better. Anything burst of extra energy goes to helping my 90 year old mother or my daughter who is just about to have another baby and needs help with her 18 month old. All I am asking for is a few weeks break from extranial crap! I've given up telling people I am tired when they ask how I feel. Mine is a hypochondriac as well...I have been the one who never gets sick...I think he is ready for something to hit him, which is why he wants me to get better quick!
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Speaking of laughing out loud, Lenn's last line really cracked me up - 'I think he is ready for something to hit him, which is why he wants me to get better quick!'
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...recent delvelopment. Jim just walked through the living room with a thermomer in his mouth, and is sitting across from me, waiting for me to say something. I have to pick up my computer and leave the room before I start laughing.
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Poor baby! Give the guy a hug!
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Janet.... funny!
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Hello Friends,
I am so still struggling with the bc dx, my other health issues and housing and jobs and partner and kids and ex partner. which ever way I turn I feel trapped.
I have to get some help so I am going here on Thurs at 2pm. www.thehaven.org.uk to see a counsellor.
I am worn out.
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Janet, I did the laughing for you! Hope your husband's temp wasn't too high. Reminds me of this video about a man with a cold.
Off for mammo, labs, MO and SO followups today. I have not even told my husband. He says I'm "obsessed" about recurrence (I'm not, but I've mentioned it a couple of times as a possibility, so in his head that means I'm obsessed). And he doesn't want to hear about my health anymore. I could not even bring myself to mention to him that I'll spending 5 hours at the cancer center today, I'm too pissed off.
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Wintersocks...I'm so sorry you are feeling down, but I am glad you are seeing someone. I hope and pray that your visit on Thursday is helpful. Please keep us posted. You are dealing with a lot on top of bc.
cfdr...the video made me laugh out loud. Thank you so much for posting that. It made my day. I hope today goes well. You are surely not "obsessed"...you are perfectly normal. Let us know how it goes.
Janet...how is Jim? Did you give him a bell? Did you stroke his head and say "poor little bunny"? Is it a cold or a hangover? Will he recover?
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cfdr - Loved the video. But I realized after posting that I was just indulging in a lot of serious whining, when I don't really have any legitimate issues. I didn't even acknowledge your posts. After reading what you're going through I felt like I have it pretty good. I don't know what it's like to have someone cheat on you - but I imagine that it would rock every single foundation of your life. Not to mention that he was close to walking out on you. I'm sorry that you have to go through that. Every woman dealing with life after bc should have the right to understanding as well as a good bout of fatigue. I's lonely enough without having to censor yourself at home.
Timbuktu - It's great that your DH went with you to therapy last Wednesday. Hopefully he'll keep it up. I love your friend's session where a chair was set out for cancer. Such a simple idea but it makes so much sense. We (I) try so hard to make it the silent roommate but it deserves a seat of its' own.
Wintersocks - No wonder you're worn out. I've followed your story and I don't know how you do it. (Well, yes I do - Horace, and the girlfriends). You're very strong for having dealt with everything so far. But, wonderful that you're going to The Haven. I'm sure you'll get the support you need, as well as the understanding you deserve.
Lenn13 - Your daughter and mother are so lucky to have you. But holy cow - sounds like you need a break. You sound like Superwoman. Where all the the Super men?
Rabbit - I'm with you on the diet & exercise. It's been nine weeks since surgery, and I've been milking my convalescence, bud I've got to get off my arse. Am going to pump up the tires on my bike, head to the grocery store, and stock up on organic chicken and kale. But by the way - summer with the kids is a perfectly good excuse to relax your self-discipline.
RockyM - I'm glad you've got the kids, friends, & mom. I'm sorry your husband is not part of the group though. Sounds like he has to uses up all his grownup-ness at the office. Why is it that men resist counseling?! It just gives them more time for crap to grow in their heads.
Here's an interesting story. I talked to a Dominatrix once. I went to her 'lair' and she showed me all her costumes and equipment. There was a adult 'Jolly Jumper' hanging from the ceiling. She had a lot of very powerful male clients. They'd come in to wear a diaper, get spanked, crawl, or sit in the Jolly Jumper and be treated like a baby. None of her sessions involved sex, or women. Just men who wished to be dominated. And the more powerful the client - the more infantile their session.
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Rabbit - I missed your post this morning. We must have been writing at the same time.
Jim's temperature was 98.8 yesterday, which he pointed out, is much higher than it's supposed to be. I told him to have a beer.
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Janet, Oh my gosh... I just got a picture of all those guys in her "lair." I recall having that conversation before about powerful men. I do think his grownup-ness is limited. You are right on the money there. I would just love to see him at work since he says he behaves the same. I don't believe it.
Why the heck do we as women have to be tough on all accounts. I would guess that you don't find ladies going somewhere to ask like a baby, although you do hear about people who liked to be spanked. Think I'll pass on that one. Hubby did call this afternoon to see how my dental surgery went so I give him credit for that.
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Cfdr - hope it all went well today . Getting a mamo seems so far off for me. I can't imagine what that anticipation feels like.
Winter socks- good luck on Thursday. Hope your session works out for you.0 -
Mammo was fine! What a relief. Also my last surgical followup. I have a radiation followup in the spring, and another MO a year from now, plus another mammo and a bone scan next year.
I posted my good news on facebook; my husband texted me with "your appointment was today? You didn't mention it all weekend." I told him that he had let me know he was sick of me talking about my health, and that I was still smarting from his "obsessed about recurrence" comment. Also let him know that I'd been feeling a lump for 6 weeks, but it was near the scar so I was betting that it was just internal scar tissue (it was). So if he ever calls me obsessed about recurrence again, I'll remind him that I felt a lump, assumed the best and didn't even mention it, much less panic over it.
I saw the NP in the MO office, per usual. She said that it's unlikely that the side effects from chemo would be making me tired this far out from treatment..which is bull pucky. I'm tempted to email her this article from the Journal of Translation Oncology called Cancer-Related Fatigue: The Scale of the Problem, which states "A recent study of 763 women who survived breast cancer found that 35% still reported fatigue 1–5 years after completion of their treatment, and 34% reported fatigue 5–10 years after treatment completion".
The only tool the oncologist seem to have is exercise. I told her a did a 20-minute yoga routine on Sunday, and it took me an hour of lying down to recover. A couple weeks ago I went on a 90-minute hike. That one took 3 days and a B12 shot to recover from. I've continued to exercise before, during, and after treatment. Hasn't made any appreciable difference and has often made it worse.
My blood test was not perfect: my calcium and protein levels are up slightly. She told me to cut back on my calcium supplements. I was a little surprised, because I thought high calcium could be a sign of bone mets, but I'll just cut back on my supplements (happy to save some money!) and hope for the best, because, you know, I'm not obsessed about mets and recurrence. I save my obsession for trying to figure out how to deal with fatigue.
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Janet...you are too funny. I'd be pretty worried about that 98.8 "fever". The dominatrix story had my chin on the ground. Seriously...wth is wrong with those men? All I can say is...it's no wonder that men don't bear children. Women are the stronger sex, indeed. And thanks for cheering me up about my self discipline being less-than-stellar in the summer with the kids home. This has gone a bit far, though. I don't fit into any of my clothes!
Rocky...nice of hubby to call about the dental surgery. We'll give him a point on that one. What did you have done? I'm sorry that I can't remember...let's blame chemo. brain. Tooth pain is horrible, so I sympathize.
cfdr...how did yesterday go?
Lenn...the anticipation of a mammo. is really tough for me. At my facility (don't know if it's like this elsewhere), they take the images and then I am sent to the waiting room while the radiologist looks at them. Then they give me the results, so I know what's going on (or not going on) by the time I leave. I really like that they do it that way but the time I am waiting is difficult, to say the least (although way better than waiting for days for results). And when I call to make the appointment, I think to myself...hmm, what day I am willing to risk getting life changing news? But on a different note, how was the DWTS event the other night? That show is a big fav. in my house.
Wintersocks...just 2 days 'til Thurs. Hoping for some relief for you.
Thinking about all of you in a special way today.
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