Why was I stronger DURING treatment than I am now?
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Hi All,
Like many of you, I continue to struggle through this post treatment period--emotionally and physically. I can't even list all the stuff. It's just too overwhelming when I look at the list so I try to leave it behind, and carry on. I found this blog post from a breast cancer patient. She so aptly describes where I am now. She's a terrific writer. Her words help me with this difficult time in my life.
http://www.wendydonner.com/post/108063699019/battl...
Strength to you all.
Amy
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2 Tabbies, I don't know if I have any options to Tamoxifen at this point. I am on Effexor, like you. I'm at 150mg. I look like half of the Stay Puff Marshmallow Man or the Michelin tire guy with all the bandages on my arm due to the therapy. Wanna laugh? Imaging someone trying to type like that! I have been through less than most of you. I don't know all of my dates so I haven't updated my history like you have. I've had a mastectomy, 11 lymph nodes removed, several rounds of chemo and like 8 weeks of radiation. My body screems to stop and take a break, but I can't. Like all of you I have bills to pay, and like some, I have kids. I actually turned to my husband on Sunday and started balling like a baby. But I continue to be grateful for the support found here and hope that I may offer some.
Daisy Q - all I can say is Wow! That link does offer some hope and is worded exquisitely!
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my husband had been awesome my whole treatment. I finished rads on Wednesday...and he's now back to working 14 hour days and leaving me with both kids like it never happened. I'm still exhausted and working full time and now I'm by myself with the kids at night. It's like someone flipped the "she's all better" switch into the on position. My body needs rest...sigh..
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Tresjoli2 you need the time to heal - talk to your husband, maybe take more time off of work, my MO told me that it takes at least twice as long as you were in treatment to recover, and it's possible that you may not feel back to your old self for quite a while. Take the time. Don't feel bad about asking for help.
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So I will admit this here and only here that I've "forgotten" to take my tamoxifen for the last 6 days. I'm tired of my tailbone hurting all day while I sit at my desk, shoulders, arms neck....am I really suppose to do this for the next 10 yrs? I don't know what other drug would be better? I'm premenopausal...still getting a lovely period every month. I know I need to go back to my doctor...I'm not depressed...I'm just so sick and tired of being sick and tired.
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Tresjoli2: Ugh. The "she's all better" switch. I wish I hadn't bought into that. I pushed myself way too hard and ended up sick over and over again the past 6 months. I agree with LindaKR! Try to do only what you have to do, leave things undone, get help..
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I can totally relate to this, I finished chemo 3/4 weeks ago after 18week & I feel shattered like my mask of being brave can come off & I'm all ova the place!
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sorry I pressed submit before I had finished. It's like you have crossed the finishing line & won the biggest race of your life. I think maybe we need time to feel situationally depressed, accept it's a shitty time in our life but if it has to be cut short go out with a bang, don't sit & wait, dance in the rain like no one is watching!
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Tresjoli2 - You're doing too much.
Can your husband pitch in a couple of nights a week ( and by that I mean every night) ? Or do you have a sister/friend that can take the kids on a weekend so you can nap? Or make you meals that only have to be reheated? I've been where you are, and I felt as though I'd been hit by a truck. It was rough. But your body is still healing and it need time to rebuild. Seriously - it's important to rebuild your strength rather than deplete every last little drop of energy you have. You need to get stronger.
It drive me nuts that there's nobody to help coach us through this 'invisible healing'. And it drives me nuts that almost every woman I know can't announce that she is going to bed when there's a pile of laundry and a kitchen to be cleaned. Taking time to rest shouldn't be a luxury - it is a necessity. I'm just as guilty - I had a hard time saying 'no', and 'I've had enough' but I was certainly felt better every time I did. And I tried not to complain to much. So when I said I was 'tired' it wasn't just that I was sleepy, it was so bone-tired it was as though I was being sucked into a vortex. So, during my invisible recovery, and my husband would say that he was 'tired' I'd want to punch him in the throat. (Once he complained about his hair and I wanted to divorce him)
There seems to be a missing element in the medical process. Doctors are wonderful - nurses are fabulous - but patients would benefit from a back-to-life counsellor that could coach family members once the actual treatment was finished.
Try to take time for yourself. I know it's hard - but it's important.
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I saw my MO in April after finishing rads (finished chemo in Dec 2014), and now I'm on the 3 month followup plan. The next day as I was driving to work, it dawned on me that it was exactly 9 months from my diagnosis. I thought "holy crap, I could have had a baby in that time!" It dawned on me that upon diagnosis, I jumped on a very fast moving train. Everything was focused on execution of the next test, scan, treatment, dr visit, etc. And then without even slowing down, the train came to a screeching halt, and I was told to get off the train and get on with my life. When I described it to my husband, he said "sounds like PTSD to me". When I described it to a fellow cancer patient at work, she said she knew exactly what I was talking about.
So I'm learning to be kind to myself. And try to figure out what life after breast cancer treatment looks like.
When I visited my MO last month, I told him they need to add mental health professionals to the treatment mix. He said they're working on it at my treatment center, but they're not there yet.
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Dear Lararaper1978, Welcome to the BCO community. Thanks for sharing your experience. We hope that you will stay connected here and enjoy the support and information that is readily shared among our members. Looking forward to hearing from you. The MOds
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I hope you don't mind me jumping in on this thread but I can so relate to the feeling of being on a fast train that suddenly stops and being told to get on with your life! I wish there was a manuel for survivorship!0
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A train wreck! That describes my life perfectly! And I don't even have the responsibility of taking care of children like some of you. My sympathies. For those of you whose husbands think you should be back to full speed, perhaps you should arrange for one of your oncologists to talk to them.
My cancer center has added a program of follow up care to ease the transition after active treatment. Too late for me though. I guess I should have postponed my cancer diagnosis a couple years.
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Tresjoli2 - you just finished rads on Wed. This is when the fatigue set in big time for me. No matter how much sleep I got...it was never enough. You need to take advantage of every short cut you can. Use a crock pot, buy frozen pizza...get the kids involved in helping you and...you said your DH was great during treatment but what made the difference with mine was hearing the words "radiation fatigue" come out of my Dr's mouth. It made it more real for him but kind of ticked me off that hearing it from me wasn't the same.
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JJOntario - That's another reason why I think a post treatment counsellor would be helpful - to tell other family member that radiation fatigue is the real deal. Hearing it from a spouse is never as effective as hearing it from someone in a white coat.
Sometimes boys have to be reminded that hard work isn't the only thing that makes us tired.
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I had my husband come to some of my appointments, ask certain questions when he is with you and then let him ask questions of the docs....it helped for me, then it wasn't me telling my husband.
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I haven't been here for a bit because it DOES get better. If anyone read any of my posts from when we first started this thread it would be scary! I am always reminded of how Robin Williams killed himself and I was in the same position as him only a few years earlier. The reason we aren't stronger after treatment is that it truly is PTSD. I am convinced that we deal with the trauma of the aftermath in our own ways, but there is definitely an aftermath.
Tresjoli2, your family should be picking up some of the slack! I recall that I finally snapped one day and told my family that if they didn't clean the cat box each day and make sure the kitties were fed that I was getting rid of them. I must have sounded convincing since here it is almost 5 years later and I rarely do those tasks anymore. Also, my kids began to do their own laundry, fold and put away, etc. I know my hubby helped with some things, but enough was enough.
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thanks ladies! I ordered take out tonight and I have started going to bed the second I get my kids down...laundry be damned...I'm tired
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Hooray for all of you who did whatever was necessary to get hubby and kids to pay attention and pitch in. Tresjoli2, it sounds like you're making some progress. Your husband really does need to know that you aren't "all better now."
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tresjoli2 - keep taking care of yourself.
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tesjoli, good job on demanding the help you need.
Fatigue & PTSD after the active cancer treatment train stops...no doubt. I am still exhausted, and just trying to get some of the problems with my body that have been induced by all of the various treatments is also exhausting. I probably need to add a therapeutic portion, and I have known that for a long time, I just don't know if I have the energy to truly deal with the problems.
My sister FINALLY got her results back from an MRI guided biopsy, and she doesn't have cancer! I am so happy for her, and happy for me too. I had the 18 gene panel test done as well, and I was negative for all of the gene mutations. That is good news for me and my 5 sister & two nieces.
2tabbies, I hope the work stuff gets better for us both.
Lily, I hear your pain. Sorry about all of it.
Lara, it does start to get better. Obviously you can read how many of us still have problems with side effects and issues....but it is better than it was. Hang in there.
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SmartassSmurf - good news on your sister! And You!!
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I am so glad I came back and found this. I too am having a harder time now than during treatment. I've been going into the cancer center for support and they seem to want to only deal with me medically: more tests, more drugs. All I want is better side effect management and to talk about how I'm feeling.
I feel like everyone in the survivorship clinic has a prescribed set of questions and boxes to check and they aren't meeting my needs. It isn't patient centered. I feel worse now than when I went in seeking support.
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I don't post too often, but I do like to read the posts, it feels good knowing I'm not alone. Everything you are all saying describes exactly how I feel and what I am going through. I wish everyone around me understood. People actually get upset with me when I say I'm not OK. Somehow they are offended that I'm not what they need me to be. They just want me to pretend everything is fine so they can feel good.
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Looks like I have 121 pages of reading to do. I wish I had seen this thread sooner, but I probably wouldn't have related very well. Denial is my name!
In addition to the BC, I've had thyroid cancer, and a full hysterectomy to remove pre-cancerous cells. All primary cancers, no mets so far. Although they did suspect bone mets and lymphoma. Discovered during that testing that I have markers for pernicious anemia (which will probably present itself eventually, I'm told. At least that's an easy fix!). It's been quite a ride, and people are always impressed with how positive I am.
Recently, it's all crashed down and I can't fake it anymore. My boss noticed I wasn't concentrating as well and was short-tempered. I'm on "sick leave", but don't know if I will be covered. I feel like I've got this great big jigsaw puzzle in my head, and I'm struggling not only to see the pieces, but to even recognize the picture I'm trying to put together.
As usual, I come here (after a long time away) and see that others have gotten through it. I'm off to mine your wisdom through the threads!
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I'm currently on day 12 of an unofficial break off tamoxifen...and I feel good!! My energy level is back up and most of all my tailbone pain has eased a lot. I so bloody want to go back to how I felt last year at this time. My dx anniversary is coming up and things keep on going..had the same breast cyst drained yesterday (13 cc's drained the first time and now another 9). They are scheduling me for an MRI to check the thickening in my good breast. I will go back to the tamoxifen on the weekend...I just had to know what is a SE and what isn't. We are going away for Christmas...I just want to run away from "real" life for a bit
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You know, our cancer treatment centers should be having support groups that meet for post treatment/survivorship training. Mine has a lot of different ones. I go to the RENEW program (Nutrition Education and Wellness) but I've never went to the breast cancer one that meets every month. Probably should drop in some night and check that out.
We also have a chaplan and a social worker that can help.
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JJOntario, I am happy you are reaching your one year cancerversary. Happy, because that makes it closer to 5 or 50. I know year 1 is hard. Especially with all you have been through, and the cysts, etc that seem to be following you. I know it is hard to hit those yearly marks...I am coming up on two myself in December. Good luck, and I hope you feel up to celebrating the shitstorm behind you...and hopefully some sunshine in your future. I am glad for you that you feel better with some time off from tamoxafin.
Sandersmomma, I don't think they do a good job on the Mental Health part of all of this either. I have sought things out, a young survival group and was part of a mixed cancer group at my medical center. I know I need to seek out more...I just don't do it for some fool reason. I have had trouble even describing to myself what the problems are.
Metoo14, people do want us all to move on. I don't quite understand it all, but I know other people have said the same on here are I feel.....after my 1st surgery & chemo we had a party to thank people & celebrate. All of the people who helped us disappeared after the party. I still had several surgeries, radiation, Herceptin, etc to go...but people feel like I should be fat and happy because I "kicked cancers butt." I am just fat...not happy. It is so isolating to know people really do not want to know what is happening. They just want to hear everything is good. So I say everything is good. I cannot take the impatience or them convincing me I should just be positive & that is all that matters. The positive pissed me off, as if we are not positive it is our own fault for a recurrence. Phoooey.
I have my exchange surgery and revision under my arms on Thursday. Very excited to get that done. I am also happy I will be off work for a few weeks. I am still working too much and not being appreciated for it. I have been trying to point out the disparity in work load between me and some other staff (4 to 1 or 3 to 1 in many instances) and have been clear I am afraid they will punish me further because of my medical issues. The oral reprimand in my work file comes out on Monday for being "sarcastic." Asshole. We will see how that all goes.
I hope you all had a nice thanksgiving. Mine was quiet, which I like. The turkey was dry, which I can only blame myself, as I cooked it.
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Hi everyone and welcome to new people and those checking in after time away. Dee2010, I've had multiple cancers too including an incurable (but so far not bothersome) lymphoma. I can relate to not being able to fake it anymore. But I also don't have the energy to explain to people who don't get it why I am not really "fine." So I say I'm fine. I ran into my RO when I was out for a walk today. She's a sweet lady and gave me a hug. But I'm not sure even she really gets it.
JJ, I hope that thickening turns out to be nothing. What a pain about the cysts. I'm switching from Tamoxifen to Femara in hopes of few side effects, primarily depression in my case. I haven't switched yet because I had almost a full prescription of Tamoxifen and figured I could tolerate it for another 3 weeks. I also just went on Fosamax and didn't want to start 2 new meds at once. I hope your Christmas trip gives you a nice break.
Smart, good luck with your exchange! I hope you're thrilled with the results. I'm less than thrilled with mine, but look so much better in clothes than I did before. I keep reminding myself that. Not really symmetrical, but still a lot better. I really hope your work situation improves. If I got dinged for sarcasm, I'd have been fired by now. I did have a nice Thanksgiving - dinner out with friends on Thursday then dinner at home with another friend yesterday. Went for a nice walk today since the weather was nice. I've had 5 days off which has been great. Not looking forward to Monday. I'll be thinking of you Thursday.
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SmartassSmurf,- good luck on Thursday! You must be so excited! Are you happy with the size you will be getting? I sometimes think it might have been a better choice for me to have had a mx vs lx.
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