Why was I stronger DURING treatment than I am now?
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Your therapist reassured ME!
I think you make a good point about it popping its ugly head up when something else is wrong in your life.
I find myself getting anxious first and then it seems my mind searches around for what is causing it and it could be the bc or anything else. Then, if I'm busy and involved I can forget myself and feel so happy. Do you have activities that make you happy? I think all of the people and care that we got under treatment can make us feel cared for and protected. Other people are seeing to us. But then we're on our own and worried if we're missing something.
Every little ache might be a warning sign of disaster. I'm up right now at 3 am because of aches and pains that sound an alarm in my head. Is this a headache or a sign of...you know what.
I'm going to concentrate on what your therapist told you. I once went to an onco and said "I just hope they come up with a cure!" She said "lots of people are cured of bc every day." Let's hope we're in that group!
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Part of my difficulties are that I did not receive any care during diagnosis and treatment as the medical system does not provide any support here at all, just your appointment with the doctors and that is it, not even a nurse or Secretary to contact!!!!! So I found that whole journey lonely as well......
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I really agree with everything stated here. During what I call "active treatment" your constantly seeing nurses, MO, SO, PCP, PS, then bam everything comes to a halt and you're just seen every 4 months unless you experience a problem. For the most part I think I've done well, when asked "how do you feel", and I tell the truth, "okay, I have my good days and bad" I still get comments. No one wants to hear that, or that I have insomnia, hot flashes (poor hubby I freeze him out at night), joint and muscle pain (that Aleeve, Motrin or Tylenol doesn't help), and some days I go from one extreme to another with my emotions (MO gave me Effexor but can't take that feel like I have ants crawling everywhere). And on this, please don't get me wrong I LOVE my MO and SO, but in the beginning when I asked about the joint and muscle pain I got "oh, I'm surprised you have that as a symptom you generally get that with AI drug not with Tamoxifen". Why, yes, yes I do, I seem to have all the freaking side effects. I don't even read the side effects on anything so when I experience them it's the doctor or the pharmacist that tells me "oh, that could be from the tamoxifen". My PCP did a blood test because of the fatigue (oh, forgot to put that in early) thought I might have low Vitamin D levels, nope, not me I have elevated triglyceride levels (everything else is low cholesterol or right in good range both good and bad), PCP told me that was a side effect of Tamoxifen, that it wasn't that high, and she will monitor it.
One of my friends has fibromyalgia, and always told me about the "unseen" pain, I thought I understood, I've always had back problems, but DANG, I really get now. I'm not depressed, I just wish people weren't so ignorant and hurtful. I work everyday, a full day (have been for the last year, during "active treatment I worked 3 days a week at the office the other 2 from home) and I'm sorry, if when I get home I don't feel like going to the gym!
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mstrouble: Were we separated at birth? You listed virtually everything that I am experiencing! From the hot flashes to the joint pain to the Effexor to the high triglycerides, back pain, EMOTIONS, working/fatigue. Yes. The "how are you?" question. You really want to know or do you really just want me to eek out a "fine".
Back in the 80's when I worked at a restaurant that served fifty different flavors of margaritas I would simply hand over a typed out card when asked "what are the flavors?" ~~ well, perhaps I will produce a new set of cards with all my current side effects, both physical and emotional. Hand it to the person asking "how are you" and change the subject or walk away. If you really don't want to know, don't ask. Hmmmmm, I'm a little irritated again today.
Maybe I'll go hit the gym.....NOT!
((hugs to all my favorite ladies on this thread!))
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What you say is so true. Even the drs dont seem to want to hear. I used to wonder about fibromyalgia. My son is a psychiatrist and not so long ago it was considered a psychiatric condition, He explained to me how they examine patients to prove that it's emotional. But now I am thinking that it might be true because EVERYTHING hurts and it seems no one takes it seriously. All I get is "excercize will take it away." It's kind of hard to excercize when you feel that you have a needle in your knee and you're so exhausted you can barely stay awake. I just woke up from my 2 hour nap, Before going to bed I experience a fatigue I don't remember ever experiencing before. Well, at least I got that off my shoulder and I know that no one here will poo poo me. Thanks!
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Purl51-woohoo!! I've found a relative on the board!!! It's either the doctors just don't want to hear us or enough of us aren't complaining and I find that very hard to believe. I feel like they feel ok she read the side effects that's why she has them. NOT. I'd love to shake them and say yes I want the old me back to I don't want these side effects but I have them and don't lesson the fact I do.
Timbuktu-these boards have really help me knowing that I'm not totally alone in this and no one here judges you because they TRULY know what I'm talking about.
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Purl! I think you just came up with a million dollar idea!
Cancer Calling Cards! It's a brilliant idea for those of us who get tired of faking it, and tired of answering questions. You could have 'Caution:Fragile,' , 'I don't care what you're talking about', & ' No, I am not okay'.
If that doesn't work - you could get a 'mood T-shirt'. Like a mood ring, but bigger.
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Yup. I am with you, though my aches and pains have sort of stabilized. Pain wakes me maybe every 3 nights. I do see my longtime counselor, am going to a meditation class, and started lexapro a week ago which seems to really be helping so far, a few tiny sleep things but worth it. Sigh. I guess we got given another chapter cuz they caught it and treated it. I now feel relaxed enough to try and think about fun. Oh and I am a school principal, work 10 hrs day plus some evenings. Good to be busy.
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i KNOW! If it weren't for these boards I don't know what I'd do. No one else understands!
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Hello my lovely friends,
I have not been on for a while as I moved house and couldn't get online. I hope everyone is ok. Janet m, Lily 55, Purl 51 and others.
I have had my 2nd NED and tomorrow I am going for my lymphodema check.
I feel very down, mostly over my 2 sons...19 & 15. They cause me a lot of pain.....
Wow, things are tough
Please someone say hi.....
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Hi winter!
Sons, what can I say? Heartbreakers! OTH, my daughters aren't much better! lol gotta laugh!
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wintersocks: Hello and a big hug to you. I moved in December and I know that "that alone" causes some major stress (double that for you still in the healing process, good grief!). I imagine that these two teen boys of yours were not "helpful little angels" during this transition. I just have a physic feeling about this!
Is there any way to schedule some sort of massage or "something" pampering for yourself soon? At the very least a whole afternoon to yourself doing something you really enjoy.I'm happy to hear about the 2nd NED and wish you well with your lymphedema checkup. I (we) will be thinking of you. Warmest Wishes....
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Hi winter, i really empathise, i am hugely disappointed in my son who has turned out to be utterly selfish and taken me for granted for the last twelve years, i have now given up hope with him so si i REALLY get where you are, i am approaching one year surgery anniversary......struggling massively at moment.......how is your new house? Does it feel like a fresh start?
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Wintersocks,
Hi there, I've been wondering what you've been up too. Congratulations on surviving the house move. Never underestimate how incredibly stressful it is to have to be uprooted from one home and move in to another. This would be the perfect time for your kids to man up, and give you all the support you need - but I think that happens mostly in the movies. I'm really sorry their behaviour is causing you so much pain cus you certainly have enough stuff to deal with as it is.
Do you have others in your life who are more supportive?0 -
Winter and Lily-It really must be sons likely!!!! Boy children just REALLY don't get it! And Lily not sure what it is about the 1 year mark but the last few weeks have been tough for me as well. Very grateful my DH is a sound sleeper most nights, or I've just gotten very well at silent crying, not sure which. I had always prided myself on being a strong person, I worked up to the day of delivery and was out of the hospital the next day with both of my boys and basically the same with these surgeries and chemo. Now for some strange reason I feel like I've turned into a huge marshmallow and can't function after 3 if I don't take a nap. Geeze Louise!!!!
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I just got back an hour ago from talking to the counselor at the cancer clinic. It is perfectly normal. She said most BC women experience depression at about the 6 month mark. I have an appointment with a psychiatrist and was reccomended anit-depressants.
Rabbit43, if your brother had colon cancer and you have BC, you need to be screened for HNPCC. Heriditary Non-polyposis colon cancer. It is a genetic condition which causes colon, endometrial, breast and uterine cancer. Very few BC oncs konw about it but it has been "screenable" for almost 10 years. After I lost 2 brothers to colon cancer, I was tested. I carry the gene and have had 2 bouts of BC. Had a total hysterectomy to prevent endometrial and uterine.
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Ditto ladies .....my sons are 26 and 29.......they just don't get it!!!.....oh for a daughter...😥
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Hiya my lovely friends,
Yes, boys....my 15yr old seems to want to live with his Dad now, he hasn't been in school the last few days claiming he was ill then I caught him skate boarding in the park. What can i do? his Dad was at a gig (God, he is so selfish) I've just been sobbing most of the night. I can't keep it in any more. It's those real body heaving sobs. I think it is just everything, the move, the kids, the everything. I was supposed to go for my lymphodema check on Mon, and well to be honest I couldn't get out of bed. I think I am very depressed. The b/c dx has just knocked me off my feet I think........
I feel like I have lost the boys to thier Dad. Now here I am alone in this flat, still looking like a fright, no job (had to stop it after dx), no money, no breast....I had a bath tonight to try to feel better then saw the horrid scar.
How much worse can it get?
I think I need to see someone
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Wintersocks.....not pushing meds, but Inhad a complete meltdown last summer. I am now on an anti-depressant and an anti-anxiety med when needed. They have saved my life. Not saying I don't have my moments, but in general, I am a 100% improved.
I'm sorry you are going through this and perhaps seeing a therapist would be another
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Winter, it does sound as though it can only go up from here! What a trial you have been through,
As for that scar,..battle scars. Proof that you can survive! That scar is a good thing, it means the monster is gone!
It will fade in time and you will survive. Thats what counts in the end. But what you wrote about your son felt like a punch in the gut. Don't let them get you, take care of yourself. Hopefully the pain will fade and you will find a new start. So many times I have thought I was at the end of my rope and lo and behold, there was more rope! Hang on and be well!
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My total breakdown was just after the one year mark -- or just during, lol. I did my 4 days in the hospital, and the only good I felt it did was that after 1 day in there I was highly motivated to get the hell out. I've been doing better since then and have enjoyed being able to work in the yard. My neighbors still bug me (she just stomped up the steps again), but that is manageable now. I'm not ready to kill them or myself like I was in February and March. Maybe the antidepressant is helping. Maybe I needed the total breakdown in order to make a new start. Anyway, I didn't even go to my monthly breast cancer support group tonight. I just didn't feel like focusing on breast cancer. I really don't focus on it too much anymore.
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Wintersocks my therapist told me to talk to other women same as me,idea scares me but i can call you from here if you want to try a chat, we share a lot i think?
I fell apart in my one safe refuge today, my dance class and trying to hold it together as feel i am losing everything0 -
I'm wondering if you are on arrimidex? I broke down crying in the drs office when i was on it and she just shook her head and said "that's arrimidex". I don't normally cry that way. When I went off of it the tears stopped. At least in public.
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I was on letrozole but stopped it three days ago - I have pain in my chest and cannot breathe and dance class is all that keeps me sane, its been my cancer free zone since diagnosis........what are you taking instead of arimidex? I just still feel awful, cried all the way home and even now have this crushing sensation in my chest, and feel bit breathless.....I am so tired of feeling like ****
We have all the pinked campaigns on TV at the moment all making cancer an alien enemy instead of a betrayal / error by our own bodies, why can´t they even present it correctly so that people feel empowered?
****ed off is me today, if tears made us lose weight I´d be skinny
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I hope the Letrozole wears off and you find that is the cause of how you feel. If you have to take something, at least you'll know what is causing how you feel,
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I had a very different reaction to antidepressants. I went on lexapro right before starting chemo, then started letrozole right after chemo, so it's been difficult to sort out what symptoms are from what. I have had issues with fatigue more than a year after chemo, and the oncologists just shrugged and said to increase my antidepressant. But I didn't feel depressed, and I read that fatigue can be a side effect of lexapro.
I met with my primary physician recently, and we decided that I would taper off the lexapro, and if I still felt like I needed an antidepressant, she'd switch me to wellbutrin. I could feel the difference only immediately as I dropped to the 1/2 dose of lexapro. More energy, less fatigue, more focus, more motivation. And ironically, I feel my mood has improved.
My PCP said that lexapro is good for anxiety and sadness, whereas wellbutrin is better for fatigue and sadness. I feel like I would not be sad if I had more energy! Also, lexapro can negatively affect sex drive and ability to reach orgasm, but wellbutrin is neutral on that.
Not knocking anyone for whom antidepressants have been helpful...I certainly am not ruling out going back on, but on wellbutrin instead. But I really wonder how much more quickly I would have recovered from chemo if I hadn't been on the lexapro.
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Wintersocks -
Crap. Things sound really crummy. But Timbuktu said something important - she thought she was at the end of her rope, and lo and behold there was more rope.
You've got to find that rope sister. It may not be available to you at the moment, and you may just want to stay in bed, but that rope is there somewhere. You've been face with an overwhelming amount of challenges and now you're getting walloped with another - and you've got the strength inside of you to get through this. I know this for a fact, because you've already handled so much and that kind of strength doesn't just run out- it simmers somewhere inside of you and will require a bit of digging, but it's there. Waiting for you.
It sounds to me like you do need to see someone. I'm all for seeking out professional help to coach you through the tough times when the shit starts flying. Life's hard, and we need guidance. Especially at this time when you're experience a ton of loss (breast, kids, house, job, money, husband, lifestyle). And with depression also comes a loss of joy, and identity. It's too much.
And if you've lost the ability to 'keep it in' and are sobbing - that's a good thing. Keeping it in is unhealthy, and you and your body have every right to collapse. But after you've cried yourself into a puddle, I hope that you realize that you deserve better and call your doctor, or your friend, and start talking.
I don't have any kids, but from what my friends tell me, the teenage years are when boys want to be with their dads. Till puberty they want their mom, and then they search out the dad. One friend with twin 15 yr old boys is going through a divorce, has moved out of the house, and now the kids have stopped visiting. The change in them was unexpected, and she's heartbroken. I'm sure you are to.
Hopefully you can find someone to help you make sense of your boys behaviour. Frankly, I think your own behaviour sounds pretty normal, considering what you've been through. I didn't have to go through a fraction of that stuff, and I spent a good chunk of time sobbing my heart out. And if you are depressed, that's normal too. But depression is painful - so finding help is good.
And maybe it's not a good idea to let your kids your kids looking a fright. Your friends, sure. The gals at the grocery store, sure. But your kids might get so uncomfortable seeing you in a different state, that they stay further away. Some kids have the maturity to handle it, but some kids don't. And you REALLY don't want them going back to the areshole ex and saying that 'mom looks terrible'. He doesn't need that satisfaction, and you don't need to feel worse about yourself.
When I lost my hair, I went to a program at my hospital called, 'look good feel good. Well, I thought it ould be a lot of bs. The last thing I wanted was to learn how to apply make-up, or worry about the perfect shade of lipstick. But my chemo nurses also told me that I should try to dress nicely for treatment. Nothing fancy, but just take them time to comb my wig, and put on a shirt that wasn't covered in egg, and a sweater that wasn't covered in dog hair. So I did, and surprised myself by feeling better. I also found that by looking respectable, I didn't want to run home and go back to bed. I felt I was better prepared to be out for a while, and was representing myself as who I am. Honestly, there were some days where I could only manage sweatpants, but it was a start. And all baby steps are good steps. Even if they seem trivial at the time.
I'm really sorry your going through this. Please keep us posted.
Janet
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Been on Lexapro now 3 weeks, feel much much better. Started at a very low dose since I was so afraid of it, didn't want SEs or to feel worse... after 2 weeks of the only side effect being feeling better I went up a tiny bit (still not at the actual prescribed dose of 10, just at 7.5.) I must say that in conjunction with exercise and meditation, the meds really are helping, thank god. And sleep has been just fine. My bleak "what does it matter, it'll only get worse, why bother" mood has changed for the better. who knew? I'm sure some of it is delayed reaction to the whole experience, the chemo, and the Aromasin. All bad for the mood. So I hope I stay on this more positive trend.
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That's great news Lisa! I sure didn't want to go back on meds, but I guess they are helping. I'm finally feeling like there's a future out there for me that I need to plan for and be excited about.
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I've been doing the lexapro taper for almost a month now. Cut my 10mg does to 5mg, then to 5mg every other day. I was feeling great until about 3 days after my last dose, then the withdrawal symptoms began. Mood swings, headache, body ache, dizziness, fatigue, runny nose, and so cold that I have been lying on the bed in sweats with four comforters on...that is about 3x I would use to keep warm during the depths of winter! I took another 5mg yesterday, and am going to try another couple of weeks of tapering at about 2.5mg per dose.
I've been reading forums about lexapro withdrawal and this is not unusual. It's frustrating, though, I am so ready to finally feel better, and now here I am spending the weekend in bed.
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