Why was I stronger DURING treatment than I am now?
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You ladies will TOTALLY get this:
I attended a wedding yesterday and ran into my step sister who I haven't seen in 15 years. She pulled me aside. "How ARE you? I heard about the breast cancer. How ARE you?" ~ you can almost hear her voice, right? I said I'm doing pretty good. She wanted more detail, so after I gave her a "brief" synopsis of my mastectomy, the chemo, the radiation and the ongoing medication.....she just slowly replied with great concern. "You know? I think it's the chemo and radiation that is causing the breast cancer deaths. I don't think many women in the past died of breast cancer until a few years ago."
I just managed a blank stare of disbelief, almost laughed and walked away (for another 15 years).
Love to you my friends.....
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Whoa! Is she retarded? Or was she drunk? Yes, stay away for another 15 years, for sure!
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purl, just getting immersed in this thread but had to comment on the step-sister. I am proud of you for not punching her. I have never punched someone, but I would have had a hard time holding back in that situation. 15 years may not be enough.
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Ignorance abounds. I'll bet she doesn't vaccinate her kids, either.
The thing that's been bugging me lately is when I talk to someone about how fatigued I am, they will say something like "Well gee, we're all getting older, the other day I
spent 13 hours doing chores and going to the gym, and I was really
exhausted afterwards."Or, the other thing that's happened several times is I start watching a movie on Netflix, and realize within 10 seconds that I've watched it before (in the last year or so). Yet I can remember zero about the plot, characters, even whether it has a happy ending or not. So I watch it again, and it's like a 2-hour long deja vu...I remember each second as it unfolds, but could not tell you what happens next. I told this to a friend who said "Oh, that's nothing, sometimes I pick up a book and realize I read it years ago". Yes, years ago. Not LAST YEAR.
I've decided to stop even talking to people (other than my husband) who are not survivors about what it's like. The last two comments were from women who are very close to me. But they just don't get that the cancer experience is not like the "I'm tired" or "I forgot something from decades ago" experience. And I feel like a crazy person trying to explain it to them. My husband has seen all too closely how it's affected my body and brain. I don't need to explain it to him.
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You tell it like it is! I know exactly what you mean! Everyone says those things to me, "oh i forget things all of the time." etc. I had one friend actually tell me "You're fine. You're exaggerating". They make me feel like a whiner, like a hypochondriac, when in fact this is very real and very different from their little slips of memory or moments of fatigue. I suppose they are trying to empathize but of course you're right, no one can empathize with this. You have to have been through it. And yes, my husband has seen the sufferiing and recognizes the differences. But even he doesn't know what it "feels" like. Only we on this thread know that.
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cfdr - Sometimes when my partner (Jim) complains about being tired I want to punch him in the head. Same goes for some of my friends. Not because they're inconsiderate - but because they don't know what it's like to be me.
This morning my sister called to to chat. And out of nowhere she said ' I know that you're tired, and that the tamoxifen is probably f*cking with you - and you're working really hard just to keep up. And I just want you to know that you're doing a really great job, and I'm proud of you'. It was a great way to start the day. Nobody but my sister understands the balancing act of trying to stay sane. Yay for sisters.
I'm going over to her house tonight 'cus she want to cook me a high protein dinner. Partly cus she loves me, and partly because I'm getting my nipples tomorrow and she wants to pump me full of vitamins.
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How lucky are you? What a sister! Give her a hug from me!
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Thanks Ladies; I'm so grateful to be able to share with you, knowing you understand soooooo well.
Yes, Janet, please give your sister a big hug from me too! Now "those" are words of support; soothing music to the ear.
Hug her, then give her another and another and say, "from my friends Tim and Purl".
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Kudos to your sister! Yes, yes, yes. It was frustrating during the worst of my fatigue, because I looked like a lazy slug on the sofa for hours, but that was after it had been such an effort to get a few hours of work done, a chore or two, maybe a walk. I really wanted someone to realize that even though it didn't look it, I was actually working very hard to accomplish the little I was able to handle. How lucky you are to have someone on your side who recognizes that!
Good luck with your surgery!
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I had a mini-revelation this weekend about the recommendation for exercise for people with cancer-related fatigue. A friend of mine is teaching a yoga for cancer patients class, and asked if I would join. She noted how a clinical trial had shown how helpful it is for fatigue. Well, first of all, the trial had 11 participants, which is not enough to be statistically significant. But I remembered last year when I tried to sign up for a clinical trial for exercise for breast cancer survivors, and was rejected because I was too fit. They literally said they were looking for couch potatoes. And I asked my lymphedema therapist about an exercise technique specifically for lymphedema patients, and he said "Oh, those are designed for people who have never exercised and have no muscle tone. You are already active so they would be too easy for you." So I wonder how many of these trials that show such great improvement is because they are only choosing people who are sedentary, out of shape, no muscle tone...so of course they are going to show improvement!
I also wonder about the degree of improvement. They express it in percentages of people who said their fatigue improved, but what I'd like to see is more real-world measurements: "Was able to work full-time again after this course of exercise" or "No longer has to hire someone to mow the lawn because it was too difficult" of "Was able to stay out past 9pm without being a basket case the next day". But my guess is that the improvements are more along the lines of "Walks around the block once a day and watches 30 minutes less TV". :-/
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i was a four full n Zumba classes a week before, now it seems I can only managevtwo or three and fall asleep afterwards
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I can't tell you how glad I am to read about the movie thing. I thought it was just me. My daughter just laughs it off, but my son gets frustrated with me. I try so hard to be the mom I was before BC, but it is impossible. I remember a school Mother's Day note my son wrote several years back - talked about how I was wonder mom because I could cook dinner, do laundry, and help with homework all at the same time. Now I can't multi- task if my life depended on it. Oh, well. We can now rent the movies from the almost new section at Family Video; no need to spend the big bucks on the new releases. They are ALL new to me!
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Purl, yep, your step sis is brain dead, with very marginal social skills ! I loved Tim's comment.
Janet, good luck tomorrow...let us know how it goes!
Smartass, love your name. Tell us about yourself.
I, also have chemo brain... I assume it will get better. Really embarrassing, I forget conversations, especially if I have had even 1 glass of wine. My friends look at me like I have lost it ! Family understands, they watched me struggle through dose dense chemo. I have tough skin, BUT sometimes I irritate myself. Mostly I shrug my shoulders & say f#*k it.
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Janet,
Popping by to say hi and I hope the procedure goes well.
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Janet, has your sister traveled this road before? I cannot imagine someone being so thoughtful except those of us who have lived it. Even my husband said to me today "you need to get more sleep so you won't be as tired" but he thinks it's just that I don't sleep enough at night. That's not it I tell him. Then I remember. . .he can't understand.0 -
Thanks Winter!
Merrellgirl - No - my sister's never traveled this road, (thankfully) but she's very proactive about healing. She was talking to some people who had been down this road, and told her about Tamoxi-fun. So she started doing some reading, and was horrified to learn that it causes joint pain, so she's looking for something to make it go away. I'm lucky. She's always got my back.
Meanwhile, back at the ranch, My DH (Jim) stayed up late watching tv and now he is SO tired that he can barely go to work. Hmph.
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Janet, so good for you to have such a thoughtful sibling. As the others said earlier, give her a hug from me, too!
I don't know what procedure you're having done today, but I pray it goes well and is successful.
I am so glad to have this board to come to everyday. . .
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HI, I just found this thread and I wanted to say hello, you all seem like you are speaking right to me.. Tired- UFFF I just can not sleep enough sometimes. Go to a wedding and have to sleep the next day. I have been on Tamoxifen and a low dose Effexor for over a year now and I guess it doesn't get any better. GRRRRR... I was hoping to try to put some of this horrible disease behind me but treatments keep telling me differently.You spoke of people saying stupid things. When I was first DX and told my boss I would need time off - she looked at me and said- " Don't they just give you a pill for that?" UMMMM.. I wanted to smack her. I worked off and on through treatment until internal radiation put me in the hospital and I overdid it at work trying to play catch up when I got out and ended up tearing scar tissue out, got an internal bleed and had to start seeing OT for lumphedemia as I had started that as well. When I called in saying I was on a doc ordered leave she told my co-workers I was "faking" being sick and then a month later when I was scheduled to return to work, I was told they had eliminated my job as I had been gone to long- but if I wanted 3 hours a day and do basically what I did before plus some added duties like work in the kitchen and drive the bus I would have that. I tried to get FMLA to help me and they would have forced them to give me my job back but because there were not 50 people working the same job as me in a 75 mile radius there was nothing they could do. I did apply for Unemployment which they tried to fight but found out since I had a medical note from the doctor that I had had 60 days to come back to work, so they had to pay unemployment.. I just cried and cried, I had loved my job working with seniors. I felt stabbed in the back. Throughout my treatment I was told- This is temporary, your life will be back to normal shortly, where you can go to work and go home cook supper etc. So that dream was drug out from under my feet. I did tell my boss and board member that I was not on a Caribean cruise I was having cancer treatments, but other than that I basically ran out of the room and then bawled on my way home. Talk about making a person go into depresson, took a bit to get out of it. UFF --PEOPLE ARE STUPID!!
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Jennie, you describe my feelings that accompany me everywhere sometimes: angry and sad. It really helped to furiously write it all down! I think therapy is helping.
Janet, I've always wished for a sister. Now I really do! Hope everything went well today.
But, Purl! Your step-sister sounds miserable! Good for you on not having such a toxic person in your life.
People still ask me how I am, which is nice. I always say, "fine, good!" because I know that is what they want to hear and they wouldn't understand anything else, even if they tried.
I am sure more tired than I'd like to be. Even my older "cancer" friends seem to run circles around me sometimes but we didn't all go through the same diagnoses, treatments, etc., I guess. Still wish it were different.
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ndgrrl, that is terrible and a lot to deal with!! I wish I could think of the perfect thing to say to you. How about, "Hope gets us up in the morning!" Just stay here and someone more articulate will chime in.
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ndgrrl, you are right...some people are really stupid, and your boss sounds like one of them. Ignorant, and mean, as well.
Have you talked to a lawyer? I would guess that cancer treatment is protected under the ADA. Although employers who want to do so can usually weasel out of anything.
I know what you mean about going to a wedding and having to sleep the whole next day. I find I have to keep a very steady, undemanding routine of activity or I pay for it.
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Ndgrrl, I am so sorry you work for an a*hole. Truly, you deserve better & this person sounds like someone who should not be in charge of people. Cfdr is correct, the ADA does have specific guidelines for cancer patients, and I think the threshold of employees is 25 instead of 50 like FMLA. I will look for the link I have to the cancer section of the AD A...unfortunately I had to use it to get back to work with my restrictions. I will post it when I find it, because I think it may be helpful to you & others.
Hole in one, the husband gave me this nickname...probably for obvious reasons.
I was diagnosed at 41, now am 42. My surgery & chemo stats are below. I finished radiation on October 1st, and am now on Herceptin until March. I have not yet decided whether I will do reconstruction, so I am going to wait until spring & then figure that out. Meanwhile I am doing some research on it. I started back to work full time at the beginning of September. I came to this topic because I am struggling with integrating back into life. I am angry, confused, happy, frustrated, tearful, angry, forgetful, tearful...I just cannot seem to manage my emotions very well. People's reactions to my cancer infuriate me & make me sad. I am sick of the I knew this person who had cancer...and they died. The rest of my life I hope I never do that to another person for any illness...It is so disheartening.
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Thanks for posting, smartasssmurf, you said that very well for all of us. And you guys have no idea, er well, i guess you do, when i come here and read, and find out i am not the only one, who is STILL tired.
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It's so easy to think it's just us, it's not!
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I too am having a difficult time integrating into my normal life. These past two years have been so difficult, and the icing on the cake is I had to have my gallbladder removed on October 3rd. I am exhausted, and still in pain. My belly is still swollen and distended. I look like a patchwork quilt with all the scars. I finally cried this morning so hard. Why is life so hard? I keep telling myself - some people have much more difficult journies, but even that did not work.
Thankfully, I have met so many strong and kind women on these threads.
Thank you for letting me vent.
Lisa
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I can't tell you how glad I was to find this thread. I thought I was losing my mind and/or was the only wimp having such a hard time getting back to "normal." Except for a few minor details, I could have written the original post. It's been an emotional roller coaster since my active treatment ended last January. Depression. Anger. Feeling like my body has betrayed me not once but 3 times since this is my 3rd cancer. Feeling abandoned by the medical system since I'm stage III, and they don't do any tests for a recurrence because "statistically, it doesn't add any time to your life if we find it on a scan or when symptoms show up a few months later." I'm supposed to be ok with that? Well, I'm not a damn statistic, and I'd just as soon find it earlier rather than later. For one thing, I'd quit my job because there'd be no point saving for a long retirement, would there? Does no one tell the oncologists how hard this is? They act like it's shocking that I'm not all happy. Maybe they don't have a clue. Or maybe they can't do anything about it so they don't know what to say. I've tried all the things you're supposed to do to feel better - antidepressants, exercise, counseling, doing things I enjoy. My PCP even suggested "stream of consciousness" writing. That's kind of what this is, I guess. All of these things work a little, but I still feel awful more days than not. I'm getting reconstruction in a month and hope that will help. At least I'll look a bit more like a normal human female when I'm dressed and won't have to choose what I wear to hide my sunken chest. Maybe I'll feel a bit more like myself then. I hope the way I feel now isn't going to what I'm like forever. I am glad to know it's not just me with these feelings, but sorry you all have to suffer through it too.
ndgrrl, your former boss is a moron.
LiLi-RI, I'm sorry you had to have yet another surgery and hope you start feeling better soon.
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ndgrrl - Here is the link for "Questions & Answers about Cancer in the Workplace and the Americans with Disabilities Act (ADA)" which talks about your rights, accommodations, etc related to employment. It looks like the threshold is actually 15 employees instead of the 50 for FMLA. I hope it is helpful: http://www.eeoc.gov/laws/types/cancer.cfm
Glad I am not alone with these overwhelming feelings...but I hope we can all figure our way to the other side soon.
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2Tabbies, I hear you and have certainly felt some of your feelings. I hate cancer. I actually have two friends who have Waldenstrom's. One has had it for 17 years and is doing great. I pray the same for you. It sounds like you are doing the right things to feel better. Maybe we are all going through a grieving process. Nobody grieves exactly the same and grief is not linear, it just does what it does and eventually lessens.
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If it weren't for all of you on this thread, I think I would have lost my mind a long time ago. It's one thing to read the statistics and research (I'm a bit of a nerd that way), but most of the women I know personally bounced back pretty quickly, and none have had this prolonged fatigue. I don't wish this on anyone, but hearing the stories and the venting frustration from others is oddly comforting. We're all in this together.
That said, it does get better verrrry sloooowly. I read once that you need to think of your recovery in terms of seasons, not weeks or months. I find it better to think in terms of years, not seasons. Only then can I see the progress.
This month is the 3rd anniversary of the start of my chemo, and compared to the first or second anniversary, I'm doing a lot better. But I still have bad days. Too many of them. And my brain? It's like I have had a personality transplant. From ultra-organized, focused workaholic to a disorganized, lazy space cadet.
I've decided to focus on my art for awhile, because now my personality and behavior are more in tune with the cliche of the free-spirited artist than the dedicated businesswoman...if that's my new normal, I'll ride with it until the money runs out.
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cfdr, thanks for the laugh. I loved your comment "lazy space cadet". Yep, that's me! Takes me until noon to get moving, watch too much TV & I quit my job.
I have made progress since I first started posting here. Not as anxiety ridden. I was active last summer, when the weather was warm. I always struggle when the weather turns cold. Takes me until Feb. to get acclimated to the cold.
2Tabbies, I could have also written your post. Although no previous cancer. Lots of cancer in the nodes, bursting open, cancer growing on the outside. I get my 2nd Zometa infusion tomorrow. Not looking forward to that, but I insisted on it, my MO was not in favor of it, because it is not standard of care.
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