Why was I stronger DURING treatment than I am now?
Comments
-
Wow Rabbit I know we all feel your pain emotionally and physically. I was dx in Jan 2011 with IDC, Stage 2, Grade l. Had lumpectomy and 33 RADS treatments. There are days I actually dont think about it at all and others when I fixate on what I have and what I have gone through. Fact is the fear factor will be there forever; we are branded with the C word. What we cant do, and I am working on not doing, is let it totally control my life. I am scared of recurrence too. Everytime I turn around someone knows someone who has bc and sometimes they have had it come back. I have always been in control too so not being able to control this beast at all is scary but it is what it is. We are all doing everything we can with what we have to deal with - treatments, pills, etc. I hope it does get better over time. My next mammogram is in May. It will be the last one with my BS and then its back to the Womens Health Center. That is a milestone of sorts. My husband will be going with me for this one too. I dont know that even time will ever totally keep us from worrying about every little ache or pain. My sister has lobular carcinoma and has to have scans. She really gets nervous praying she doesnt light up. I can imagine. She lives in another state from me but really likes and trusts her ONC. You have to. She/he is your lifeline. I know I am going to stay on Tamoxifen for 10 years instead of 5. Taking this drug gives me a sense of protection so I feel more confident it wont come back. Your post was really good; you nailed it. Diane
0 -
I don't really think about BC everyday, but I'm not "back" yet, either. I *do* think about fatigue every day...either I'm battling it, or it's a rare day when I'm thinking "Yay! I feel normal todayl!". This has been a bad week for me...I've hardly been able to get off the sofa the last 3 days. I'm tired and I'm tired of struggling to function when I'm so tired. I'm tired for feeling guilty for everything I don't get done when I'm tired. I'm tired of feeling guilty that sometimes I really enjoy just lying on the sofa, watching the birds at the bird feeder, and not struggling to focus or self-motivate. I'm tired of lying here dreaming of all the things I want to do as soon as I have the energy to do them.
I know that depression can cause fatigue, but I feel like the fatigue is causing me to be depressed, and I'm tired of trying to figure out where that line is, and how to get back on my feet. I'm exercising and eating right and getting enough sleep and taking lots of supplements. This does feel like it's out of my control, and I'd love to let it run it's course and just watch the birdies, but I do need to make money, and vacuum the filthy carpets, and make dinner now and then because my wonderful husband has been doing everything and it's not fair to him. I don't understand why one day I'll feel OK and then for a week I'm a basket case. There's no rhyme or reason, it just comes and goes. I've kept daily logs, but the fatigue doesn't correlate with anything. It has a mind of its own, but unfortunately that mind lives in my body.
Two more weeks and I see the neuropsychologist my MO made an appointment with back in December. I really hoped that between then and now the symptoms would fade on their own and I could cancel the appointment. Now I'm glad I didn't.
0 -
Rabbit - It's nice to hear from you. You got this whole ball rolling, and I love your progress, and that of every other woman who would have at one time been crying in the closet.
I thought about your friend saying 'Are you back?' because I'm starting to understand what that means. I've been here all along - but not very present - and my mind and my body have been out of sync. Now I think I'm almost back on track, and my head is comfortable in my skin.
Or as a colleague of mine says 'The cheese was off the cracker.'
It's been ten months since I finished radiation and I don't think about cancer all the time.(the cheese is on the cracker) I do have a DIEP surgery coming up, so I think about that all the time though. Maybe if I wasn't thinking about surgery, I'd be thinking about cancer, but who knows. I feel pretty good.
I had a little blip of self pity today. I was at a water spa with some friends (that's not the bad part) and we were all in the changing room and it was crowded. I dont' like to change in public because my right breast is kind of crazy looking, so I was looking around for a quiet corner but there wasn't one. So I had to go down the hall and change in the washroom. It wasn't a big deal, but as I walked through the room full of naturally imperfect/perfect breasts and I was hit by a wave of sadness. Maybe I was just feeling vulnerable.
I value the participation of all the girls on this thread. It's a very comforting place to come when nobody understands.
Dunesleeper- Did I just see you use the words 'place of peace'? Now THAT's progress! Wonderful.
0 -
I need to express some frustration. My friend of 30 years is really irritating me. She moved out of state a few years ago and I have flown out to visit a couple times. Her family and friends are here. Anyway, since my diagnosis and treatment she has come "home" three times. Her effort to see me has been weak at best. She claims "her mom needs to come first" as she doesn't know how much longer she has her. Her mom is doing fantastic; has more energy than me. When she returns after each visit, she expects me to spend hours on the phone catching up (mostly about her). Lately I have expressed how hurt I've been and she repeats the "mom" priority. What really has me irritated is that she told me that I got breast cancer because I hold in anger.
That's what we need, right? Someone who doesn't understand to blame us for getting cancer. I really want to take a nice long break from this relationship and a few others that really are not serving me very well anymore. Honestly, I really don't like being around anyone right now. Thanks, as always, for letting me vent.
0 -
Purl....sadly I have had similar situations with some family and friends, and sadly I have had to let them go because they were causing me to much in the way of emotional heartbreak. This whole "experience is hard enough" have to try and take care of me now.
Want to be around to dance at my sons' weddings and, if I'm lucky, hold a grandchild in my arms. Trying to distress my life now.0 -
Edwards750 aka Diane...thanks for your kind words. You are so right about not letting the fear take over our lives and control us. That is a very good point. And I will add your sister to my very long prayer list. She has quite a burden to bear.
cfdr...I'm sorry you are having a rough week. Personally, I think if lying on the couch is what you need to do right now, then that is exactly what you should do. We have to revel in the little things and take joy where we can. If watching the birds at the bird feeder brings you joy, then enjoy that. You deserve it. We have dicussed on this board how everyone helps out so much when we are going through treatment, but then expects us to get right back to normal when we are done. It doesn't work that way and I hope you won't be hard on yourself that you are not there yet. Maybe small goals each day are the way to go right now. I hope you can get some answers at the neuropsychologist.
Janet...always good to hear from you. I much prefer the cheese and cracker (preferably with a large glass of wine) analogy to "being back"! ha, ha. I'm glad to hear you are feeling well and getting ready for your next hurdle. We will be right there with you all the way. And I can totally understand being uncomfortable undressing in front of the other women at the spa. I would feel the same way. Just remember there is no perfect body or person, for that matter. Please keep us posted on your surgery. And in the meantime, I hope the cheese stays on the cracker.
Purl...I hope you don't take offense to this observation, but I think that friend of 30 years is toxic. Believe it or not, the teacher I refered to in my ealier post (who had BC 7 years ago) gave me a very good piece of advice when I was first diagnosed. She told me to surround myself with positive people and stay away from anyone who is negative at all, even if they are people who are very close to me. Her mother-in-law was very negative and she told her husband that she could not talk to her anymore. I know it is hard, but I think you need to drop this friend, at least temporarily. She is being grossly unfair to you and to blame you for getting BC is ridiculous. I'd like to have a go at talking to her sometime so that I could give her a piece of my mind. I'd also like to give her a swift kick where the sun doesn't shine. Vent to us anytime...we are here for you.
Rabbit0 -
Scottie...I think our replies passed in cyberspace because it looks like we posted right around the same time. I love your goals to be there for the weddings and babies. Those are certainly things to look forward to!
About our friends and family members who are less than helpful...sometimes I think people are so wrapped up in themselves that they make our BC all about them. That is a sad state of affairs but the root of it is selfishness. When I told a very close family member that I had been diagnosed with BC, she immediately started to feel her own breast for lumps, right while I was sitting there at her kitchen table...that was a real treat! Seriously...what are people thinking? Thinking about it now makes me laugh.0 -
Rabbit.....I keep reiterating that there is no cure for stupidity....lol
0 -
Hiya Ladies
Rabbit, I had a similar experience with a 'oh god have I got cancer' breast-lump feeler- My sister who could barely make it over here (lives less than an hour away) dashed off to her doctor's the next day and demanded to be checked. It was unbelievable. I have now cut her and my Mum out of my life, Mum: 'I don't need this at my age'. Between my Mum and my sister my breast cancer became about them - how does that happen? The minute I said enough I began to feel better.
Scottee, I think you are so right when you say we have to let people go and think about ourselves. I just think why am I continually shocked at the way friends/relatives go on? I could not imagine behaving in such a way.......but so many seem to.
Janet absolutely love 'the cheese is off/on the cracker' - very funny and just a teeny bit mad!
Purl, I too (and still do really) not want to be around others, I find them too draining and get fed up with their trivialities. I have 2 friends who are always 'ill' and they insist telling me about it at length. I have 2 ops coming up this year, plus all treatment of last year. what is wrong with these people???
God I'm on a roll now!!
0 -
I was just about to mention to Purl that the best thing she can do is to rid herself of toxic people as Rabbit said. Unfortunately, sometimes there seems to be a few too many of these and we can be left a tad on the lonely side. Of course, better to be alone and mentally healthy then surrounded by those who cause us pain. Also, once you have made a choice to keep those people out of your life, it leaves room for new ones to come in.
0 -
I am lonely and prefer to be on my own or with my dogs, I have a greatly improved moaner scanner and tune out, it all feels so trivial compared to the constant fear I now have every day relentlessly, my time away has worn off and I feel worse now than before and my heart pounds so much I am sure it will give out - sounds dramatic but I feel in a low grade state of panic all the time, especially now in mid scan range again, other breast, liver, blood tests etc.....I have no spare energy and especially not for people who really don´t give a toss about anything except themselves...
Purl - get rid of her!! You are far more vulnerable to toxic people now - its all a shock this really to see just how totally self centered others are.....
0 -
Kate33...I LOVE your tag line!!!!
0 -
My friends have not said anything boneheaded about BC, but I suffered through 40 years of migraine and got to listen to many crackpot diagnoses and cures, from friends, family, acquaintances...even a cab driver! My impression is that people who are in good health like to be able to pat themselves on the back for it, and by blaming the victim they can tell themselves "I won't get breast cancer because I don't bottle up anger" or "I'll don't get headaches because I don't eat suger" or whatever. It's much more terrifying to think that any of us, at any time, could fall victim to a disease that could be lurking in our DNA. It's also more comforting for people to think that, if they did succumb, they could cure themselves with the snap of their fingers by taking some supplement or making some minor dietary adjustment.
And although breast cancer is well-publicized disease, it is also an "invisible" disease in a lot of ways. I'd wager that if you were missing half your jawbone due to oral cancer, people would be more sympathetic. But unless someone is in a gym locker room with us, our scars remain concealed. And side effects like fatigue or depression or chemo brain or PTSD are easily brushed off as being "in our heads". Well yeah, duh, we've been subjected to a traumatic and brain-damaging experience!
0 -
Hello ladies. I'll just kind of jump in here with my two cents worth. I cut out all my toxic relationships, and I am feeling far more peaceful. I got past the feeling lonely part and really came to understand that I would rather be alone than subject myself to certain people. I am hoping to develop new relationships and to practice relationship skills with them. The important thing is that I don't feel like I need people anymore. More and more I am realizing that I have to stand on my own, and I'm OK with that, even if sometimes I'm a little afraid. I still want situations to resolve pretty much immediately, but I am getting more patient -- and more aware of my unreasonable expectations. I have often heard that you have to allow yourself to get through the emotion(s), but I really didn't think this anger and fear had another side to get through. I thought it was how it would be until it killed me. For now, I think I am getting some insights that could actually make this whole thing at least a partially positive experience.
0 -
Dunesleeper....just ditto from me about relationships!!!!
0 -
Thank you so much for your words of empathy in response to my much needed vent about my friend. I am so grateful to have you all in my corner. You are a truly awesome group of honest and brave women. I am going to a "spa" for a day next week. This place I used to lay out in the buff and strut around from the shower to the sauna. Lounge on pillowy loungers ~ el buffo. Pretty proud of myself I didn't cancel. I've been once since my surgery was thankful for all the big white comfy towels stacked up everywhere as I was a bit modest about my scar and one breast. Maybe I'll be more comfortable this time. maybe not! I don't give a %#%(&^*()&^. Had to end with a bang.
0 -
Purl -
Good for you for not cancelling! I hope you'll still strut.
0 -
CFDR: And although breast cancer is well-publicized disease, it is also an "invisible" disease in a lot of ways. I'd wager that if you were missing half your jawbone due to oral cancer, people would be more sympathetic. But unless someone is in a gym locker room with us, our scars remain concealed. And side effects like fatigue or depression or chemo brain or PTSD are easily brushed off as being "in our heads". Well yeah, duh, we've been subjected to a traumatic and brain-damaging experience.
This is sooooo true and so hard to deal with at times! I am even one of those people who beat myself up when I am fatigued! I am more fatigued after chemo and radiation than I was while I was on it. I still have to take Herceptin so not sure if that brings on fatigue or not! But your are right since people cannot see our visible scars they have no clue what we are going through!!!
0 -
mt4ever: if there was a gold medal or beating yourself up, I'd be a contender! It's hard not to do so when I'm lying there like a slug and my husband is making dinner—again. I've made a vow to myself to *not* think about fatigue...that if I'm fatigued, I have three choices: (1) rest, (2) struggle through doing something anyway, or (3) exercise to try to counteract it. But whichever I choose, I have to focus on the healing or doing or exercising, not on cursing myself for being so fatigued.
I think the beating myself up makes me feel like I'm resisting somehow...that I'm not approving of the fatigue. But all it does is make me feel bad. Like, if I actually enjoyed lying on the sofa watching a video, it would be wrong. I'm trying to get out of that mindset.
0 -
Folks,
First, let me congratulate all of you on getting through the hell of cancer treatment--in all of its forms. It takes a lot of courage and determination to face that.
I read this thread with heightened interest as I am researching an essay on survivorship. I was intrigued by a tweet I had read recedntly about so much emphasis on a cure, but no emphasis on survivors. Not everyone liked reading that opinion, but I immediately saw the frustration.
As a woman with stage iv breast cancer, I read a lot of blogs and emails and tweets and articles about how stage iv women feel marginalized from the pink movement--both in acknowlegement and in research dollars. But the tweet that I read shed light on the other side of marginalization: the survivor side. Show up for some walk-a-thons, go back to work, go back to your life and that's the end of it. But I think, after managing your crisis, it's only the beginning.
Let me ask:
Do you feel that there is enough attention paid to the needs of survivors? That is, do you think orgs like Komen who tout cure and survival, lend support to you after the crisis?Do you feel that books on the market about survivorship help or hinder you? What's missing from the conversation?
How much does the concern/fear of recurrence or mestastasis occupy your thoughts? Has it ebbed over time? Are there PTSD triggers that you experience?
What does survivorship mean, exactly? Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is--in an odd sense--left behind?
I would sincerely like to to hear your thoughts about this. It's an important issue that perhaps needs some rethinking in terms of specialized care or management.
Warm regards to all,
Scorchy0 -
Scorchy - thank you for asking this - can I ask that you start a separate thread for this as I think a lot of people who might comment may not see it and I will certainly reply as I think we should be given a LOT more info on how you might feel when treatment ends and how to adjust to a new life as we NEVER get our old lives back, no matter how much we try!
0 -
Sure I will. It's a good idea. Thanks Lily 55.
0 -
Scorchy.....ditto from me!!!!!
0 -
Do you feel that there is enough attention paid to the needs of survivors? That is, do you think orgs like Komen who tout cure and survival, lend support to you after the crisis?
I'm fortunate in that the breast center that did my mastectomy has a couple of programs in place for survivors. One is Survivors Offering Support. That is a one-on-one thing, where a more experienced survivor is matched with a newbie. The other is a monthly support group. In fact I will be going to that tonight. None of it is terribly helpful for me, though, because I chose alternative treatment. Feeling out on a limb by myself sometimes makes me wish I had gone the traditional route, but that didn't feel right to me at the time; and doing that just to fit in would be just plain stupid.
Do you feel that books on the market about survivorship help or hinder you? What's missing from the conversation?
I haven't read any books about survivorship. I have some books about alternatives and nutrition, but it never occurred to me to look for books about survivorship. Next time I'm at Hopewell, I will check out their library. Maybe they have some books on the subject.
How much does the concern/fear of recurrence or mestastasis occupy your thoughts? Has it ebbed over time? Are there PTSD triggers that you experience?
I guess it occurs to me at least once a day. Whether or not it causes me fear depends on my state of mind at the time. Like now I'm in a pretty bad way. I actually contacted a suicide hotline, not that they were any help. "That's too bad" doesn't quite cut it, you know. Anyway, today I don't fear it. I want to die. However, when I was feeling pretty good, I did experience fear when the thought of recurrence came up. Mostly, though, I was just afraid of going through it all again. (For me, that just means surgery.)
What does survivorship mean, exactly? Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is--in an odd sense--left behind?
I think we are kind of left to our own devices to figure that out. The support groups help a lot. Still, it is an individual experience.
0 -
Dunes - I too share your experience of isolation as I chose mostly alternative route as you know so can we team up? Xx
0 -
I had a bit of a breakdown yesterday. The day before yesterday was the only day this week that I had completely open, no travel plans or medical appointments. I really wanted to get some work done. I was up at 6:30am, did a 20 minute yoga DVD and spent 20 minutes meditating. Had coffee at my desk and was working before 9am.
But the good start didn't last. I couldn't focus. I couldn't keep my eyes open, but couldn't sleep either. I took a break and made a side dish to have with dinner, then went back to my desk. Still struggled. Did my PT exercises, hopped on the treadmill. A short burst of energy and focus, then the fog returned. I managed to eke out nearly 4 hours of work. So much for my one full day of work all week.
So yesterday, in between my morning PT appointment and my afternoon allergy shots appointment, I couldn't bring myself to even sit at my desk. I didn't want to face another day of fog and failure. After my afternoon appointment I took a walk to the river, and walked into woods, off the trail, and sobbed. Then I came home and just lay on the sofa. I did some research and found a number of articles about PCRF: Persistent Cancer-Related Fatigue.
"Persistent Cancer-Related fatigue (PCRF), a state of being tired or weary, is one of the most common and distressing symptoms experienced by breast cancer (BC) survivors. Rates of significant PCRF in BC survivors range from 30% to 82% within the first 5-years of diagnosis and there are few treatment options for PCRF and these treatments require the availability of a trained practitioner, are associated with significant costs, pose a sizeable burden for the patient, or have unacceptable side-effects." Citation
Other studies I saw said it fell to 6% by the end of the first year. I read several articles that explored the role of cytokines, which seem to indicate that PCRF is a serious and long-lasting side effect of both cancer and cancer treatment. OTOH, there were studies that suggested that eating more greens or tomatoes or spending more time exercising are enough (I hike for 65-90 minutes at a time and eat my veggies until they are coming out of my ears).
My DH and I went out to dinner, and had a long talk about the fog & fatigue and also how I'm dealing with it (hint: not well). He wants me to focus on taking care of myself, which is wonderful, he's very supportive. I made the analogy of coming home from work, excited about what you plan to do in the evening: make dinner, listen to some music, work on a hobby, whatever. But you get to the door and the key doesn't fit. So instead of being able to focus your attention on your normal life, you are focused on your key and the door and can't move on until you solve that problem. And the fog & fatigue are like the lock that I can't find a key for. So I've become obsessed with finding a key, and frustrated that I can look through the window and see my life so close, and yet so far.
Tomorrow we leave early for a long weekend, 8 hours driving tomorrow and return on Sunday. I usually hate long car trips but I'm actually looking forward to two days of doing nothing but sitting in the passenger seat and staring out the window.
0 -
Rabbit, thanks for your thoughts. Well said. And appreciated.
Dune sleeper-a few weeks ago I called the Life After Breast CAncer hotline. Kind of helpful that day. LLBC has a website. Again, kind of helpful.
I wish my MO had a post-treatment support situation- thOugh I fear I would hear stories that scare me more.0 -
Cfdr -
I hope that you're returning from your long weekend feeling rested, and more optimistic.
Have you ever heard that phrase 'Man plans. God laughs'. Well - so much for taking advantage of your one day without any appointments. Mini-meltdowns and fatigue don't fit into any of our well laid plans. They're like popcorn - they're like the last kernels of popcorn in the popper. They just burst at random. I've had unexpected sobbing at the strangest time, and my sofa is part of my support system.
I have no word of wisdom - except to say that you are not alone, your DH sounds like a nice person, and I was thinking of you this weekend enjoying the passenger seat.
0 -
Hi ladies, I am right there with you. Janet I loved how you said it. my couch is also my support system. I am scheduled to go back to work this coming Saturday and I am scared to death. I havent worked in 8 months except for a couple of weeks during chemo which proved to me that I couldnt do my job. I am finished with chemo and radiation and should be feeling on top of the world but I just want to stay in bed. I suppose it would help if I actually took the antidepressant that I am suppose to be on. lol. Oh well. Hugs and hope everyone feels better.
0 -
mamglam, so glad to hear you're doing well. Also glad to hear that the SE's are "normal".
You can really go crazy worrying about all of these aches and pains!
But if it works, it's worth it.
0
