Stage 2 Sisters Club
Comments
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Ruthbru, that is fascinating! I like water and do drink quite a bit, but I might step it up a bit after reading your post!
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Gorgeous day here in Southern Ontario. Still have my cold so I'm not working out yet again. However, since the boys in the family are at the final baseball game of the season, we girls are going to see Cloudy with a Chance of Meatballs 2 and then onto a Mad Science birthday party. We went to Toys R Us to get the birthday present and first thing out of the chute - we are buying Glittzy Globes (all the rage for little girls). Being a 6 year-old girl is like hitting the lottery. You can dress like a gypsy, wear as much bling as you can carry and get excited at the simplest things.
Three girls (me included) stood in front of the Nerf Guns and then the Star Wars displays - looking for the present - and nope not a clue. We should have brought the brother - he would have picked out something in seconds. Finally settled on the least menacing thing we could find in the Star Wars section. Now had we been in Barbies . . . well that would have been a different story.
I know a lot of it is because I don't feel the best but I said this this morning and shocked my husband: no one cares if I am sick unless I'm having chemo. That's really how I feel. I feel like because I did so well with everything and bounced back physically quite quickly (I will be 6 months out from my DIEP on October 22)- we are immediately back to business as usual. I'm sorry but I liked getting cut some slack and catching a break now and again. Why does it take cancer and chemo to get us that stuff? Bit by bit I've been carving out "me time" but now that I am not in treatment or recovering from surgery - it's a battle to do so.
I know I have been lucky in a lot of ways. I should stop whining but I am still processing a lot of this and it seems like I just don't get any time credited to me to do so. I look "great" apparently, things are getting done, everyone is back in their old routines, but I feel like a piece of the puzzle that's missing one of her sides. I just feel like I don't fit.
Does anyone else feel like this?
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Hi HH. One year out isn't much in the grand scheme of things. You have been brutalized both mentally and physically. The fact that your body has bounced back well is really great, but it will take your mInd awhile to recover yet.
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HHCats, I remember that feeling. I had tried to carry on, keep things as normal as possible etc., and apparently did such a good job acting that several people commented on how lucky I was that treatment had been so 'easy' for me. Which made me think, 'WTF, it was the hardest thing I've ever done, and nobody even realizes it!!!!"
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HHcats
Yes I feel the same way. I am 9 weeks out form my last chemo and 2 weeks out from rads. Went back to work full time 4 weeks ago. Everyone keeps saying " aren't you feeling wonderful, it's over now". Really? I mean if someone breaks their leg it seems like they get more sympathy and time to recover than going through this!!!! Each day is a little better but it is still tough!! At least we have each other!!0 -
HHCat - so great you found this thread. LOVE your sense of humor! Your hubby was right on target about the hair. I want to have bad hair soon, any hair soon! As for the continuous 5K after your little kids, let me warn you that it does not end. My kids are older, smelly, eye-rolling, mom-ignoring, love-of-my-life teens and they still need chasing, although about other things (respect curfew, bla, bla). Good luck! Nisa
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HHcat, I can so relate to you. I am also part of the TNBC thread and had been depressed by many recent posts. Took a while to get out of my slump and finally perking up again but dreading the breast cancer awareness month. I remember going thru treatment last year in oct and thinking " man, I hate this month since it was a constant reminder of everything I was going thru". As if seeing myself in the mirror wasn't bad enough, but then I got to see pink everywhere, hear bout it on the radio and people giving me tons of pink things. Awareness is good but for someone going through it at the time, I was so sick of it! At least now, I am just getting out of the cancer look though my hair is still thin but I'm still having a hard time trying to be "normal" again. I love reading all the posts because I know I'm not alone in how I feel.
Now I just have to drink more water.0 -
I am overwhelmed by the positive support I've found on this thread. Thank you to all of you.
Gardengumby - I do feel like I've been brutalized mentally and emotionally. It is really hard to have such young kids and wind up with cancer and triple negative breast cancer to boot.
Ruthbru - I did the same thing. We decided because the kids were so young that we had to keep their lives as normal as possible. I tried to attend all their activities (except for my son's hockey games in the coldest rinks) and I would get up and take them to school, rest during the day, and then pick them up and do the dinner/homework routine until my husband got home to put us all in bed. Keeping up the normal was a double-edged sword - it kept my kids OK but it placed a lot of pressure on my husband and me. Now that "it's over" hah! - school started and we are back in our old roles and I'm not 100% sure that I'm ready. I took the summer off from kids to a great extent by putting them in day camps held at our local university and while they were off having fun and learning new stuff - I was slowly putting the pieces back together.
Shoppygirl - I'm impressed you went back to work so quickly. But again you are right - people seem to get more sympathy for breaking a bone. Maybe it's not sympathy but consideration. I dunno.
NisaVilla - my kids are already too mouthy and they don't listen at all- the first time! I can't wait until they are teenagers. I'm already getting the YES, MOM (eyeroll) from my son who is 9. You will have hair soon. I was shocked that one day I woke up and thought - hey I can go without a wig today. I still wore a baseball hat but I went wigless and it was so liberating. It felt like such progress. Hang in there.
Mely19- I think I need to stay away from the TNBC threads in order to move on. 85% of us TNs never recur and there are maybe 400 people who post on those threads. That means there are thousands of us not on the boards out living our lives. The threads just reallly freak me out and I lose sight of my diagnosis and particulars. There are no guarantees but it's just way too much in my face sometimes. I've decided that Halloween is for me this next month. We didn't do it last year because my lumpectomy was October 24, but we usually decorate the house nicely for Halloween. Fun cool stuff not scary crazy stuff. I saw somethings today at a store that caught my eye and I'll be going back next week to pick them up. I so appreciate everyone wanting to bring light to this disease but you are right when you are going through this - it becomes too much. Last year, I was almost jumped by a guy at my grocery store trying to collect for breast cancer. I was so overwhelmed (it was during chemo) and I told him no thanks. He then asked me again (Ah, come on . . .) and I just walked away. I almost went back up to him when I left the store and said "you should really think about how you approach women because you never can tell when a breast cancer patient is standing right in front of you - like me." But I knew I would cry so I just left. Claire had a good line - I'm going to tell people that I already gave . . .
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HHcat, you are right. Sometimes I do tend to get caught up in the fear of recurrence when most of us do okay. But I think I will always have a little bit of fear in me until I pass at least the 3 yr mark. My onc sees me every 3 months so each normal exam with him makes me feel better.
I'm excited to get our home decorated for the upcoming holidays too. It will be nice to be really able to enjoy this year since last year the holidays always hovered around a chemo treatment. But right now really looking forward to upcoming Hawaii trip. We decided that we needed to take more family vacations.0 -
Mely19 - my husband gave me a little pep talk last night asking me to try to put all of this in the back of my mind. He said (and he was right) - I had been doing so well but he could understand how the "Pink Month" and my 1 year anniversary coming up could throw me. The last year in so many ways is just a haze for me.
Your right about looking forward to the holidays this year. I just dragged out our Halloween decorations to see what needed fixing or thrown out. It was exciting to get them out of the basement. And we are hosting Christmas this year for my husband's entire family. There will be at least 20 of us here. Last year because of chemo - we stayed home and stayed in our PJs on Christmas.
You are so lucky to be going to Hawaii. My cousin just did her second trip there and she loves it!
I keep making forward plans . . .my theory is if you commit to something . . .you've gotta show up!
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Why cant people understand even if u didnt have chemo - u can have chemo brain from all the other drugs? I feel like a broken record saying sorry i dont remember or asking for people to remind me when something is important. Its so frustrating to feel like u have lost your mind. Hope im not the only one
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I am the Queen of Sticky Notes!
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Misgumbas - Sorry to hear you have to apologize for your illness, how frustrating! I am feeling frustrated with the expectation that I should be 100% back to normal because I finished chemo. If I hear "back to normal" one more time, I might scream...o bite someone, LoL.
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Nisa - scream first, then bite, lol! Clearly, I am still not "back to normal" whatever the heck that is ....
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Today is my one year anniversary. My husband said the doctor told me that it would take one year to get back to normal (I was never normal to begin with actually) and I've been back to my old self for months now. So screw her (his words - he's the best!). HOWEVER, I too have weird blanks in my brain. I know the word I want but can't make my mouth make it. Or I just thought of something I need to do and then immediately after can't remember what I just thought. It's chemo brain - even my husband says so.
I am a list-maker. I keep a daily list running for each day - Monday, Tuesday, etc. I write it out the weekend before in a big journal book where I can make other lists and rip them out (like grocery lists) and add to it as things come to me. It could be a doctor's appt but I also write the daily routine for my kids out on it too. Just so I don't miss anything.
But I still do miss stuff.
Robin
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Thanks to all! I kinda knew i wasnt alone but this feels like the only place to vent that people understand!
I feel sorry for the person who gets the 1st bite - lol0 -
We had or 7th chemo treatment yesterday. One more to go! Havent noticed my wife having chemp brain although she does forget words. Yesterday she was trying to tell me that she didnt take her cough medicine Monday night and she couldnt think of the words so I started doing sharades with her. Dont think she appreciated that! Anyway, one more Taxol to go!
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I do charades a lot too, the problem being I am hopeless at them so still cant get the message across.
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Jdb53 wow 1 more how exciting
ahh yes chemo brain. For 3 years I was blaming 'baby brain' now I say post effects chemo brain..lol
My almost 4 year old says the words for me to help...lol0 -
Kyliet, how soon after chemo did you start on Arimidex?
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JDB53 - most oncs start you about a month or so after chemo ends - if you are not having rads. Some will start during rads, others wait until after.
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Jdb53 I started on tamoxifen because i was premenopausal (44) about 1 week after rads finished. I didnt do well on tamoxifen. About 5 months later I started getting monthly zoladex injections to shut down my ovaries and arimidex. As specialk said everyone is different, trust your drs.
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Kyliet,
Thanks. Our Onco said he will start her a few weeks after the last chemo while she is on rads.
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Another reason I think a person gets forgetful is because that you are just so overwhelmed that you are pretty much running on overload. I remember one day when I was doing chemo. I was going to drive over to the track ( a 10 minute drive) & watch some of my DS's track meet. I have been to that track literally hundreds of times (if not more) over the years, but I got in the car, started driving, and had to pull over and just sit there because I couldn't for the life of me remember how to get there!!!! After awhile, and thinking of where I was compared where I wanted to be, it finally clicked. But, man, was that weird and creepy. Happily, I could now get you to that track without any problems.
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Just joining after reading through the thread. It's been interesting seeing how many of us have had the same experiences. I certainly have "chemo brain", even my doctor told me I had it. It has improved in the last six months, but hasn't gone away entirely. Typing remains a problem for me as I constantly hit the wrong keys and have to stop and correct, so please overlook any typos I miss. I forget words often and have trouble collecting my thoughts into cohesive sentences sometimes, especially when I am under pressure. When that happens, I get a bit frustrated and have to resort to playing the Chemo Brain card. I find people are understanding and it gives me a moment to gather my thoughts. I always reassure them that I am alright and that I just need a moment to think.
I also tire sooner than I used to, although that is getting better. I still looked drawn and sick nine months after finishing chemo, but that has ended and I look healthy and normal a year and a quarter out. People are surprised to hear that I went through extensive cancer treatments last year, which I suppose is a good thing.
My husband has been wonderfully supportive throughout. I can see that he is visably more relaxed about me now that all of the treatments are behind me nad I am looking healthier. My children are grown and have taken all of this pretty well. I thought very carefully about how I would tell them and waited until I knew what treatments my doctors wanted to use before I spoke to them.
It was harder telling the rest of my family as some tend to get very upset about things and that was not what I needed. Others are very sweet, but foolish, and I didn't want lots of dumb questions. I got those anyway. Thankfully there is a thread on here for folks like them, "OMG - They Found the Cure for Stupid!" which I turned to when their questions got too annoying, ie: "I don't understand why you have to go through surgery, chemotherapy and radiation if your lump is just the size of a jelly bean".
My explaination that it might be small, but it was doing its best to kill me did not satisfy because I was asked it again not long afterwards.SpecialK - You are the only other person I have run across anywhere who seems to have reacted as I have. I have never cried either and never felt I needed to. When I found my lump I knew immediately what it was. I wasn't happy, and I admit to feeling a bit shaken after my biopsy confirmed my suspicions. However, I decided that since I couldn't change what had happened I needed to take care of whatever had to be done in the same way I would handle any other disease, and I needed to think postively. I know that has made the whole experience easier. My Radiation doctor and nurse were surprised and congratulated me on my attitude as they said "too many people allow their disease to take over their lives and turn themselves into walking talking cancer cells".
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hortense - I'm glad to know you handled things in the same way I did, makes me feel less unusual, lol! - I just felt there was nothing to be gained from becoming too emotional about things - not to say that I wasn't frightened, I just didn't express it by crying. I fully realize that this is not what most people do and I am not suggesting others should be less emotional, it was just the way I (and you!) coped.
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ruthbru... I call them FLYNS. F**king little yellow notes.
They're everwhere.0 -
Too bad we didn't invest in the FLYNS when they first came out. We would be millionaires!
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Yesterday I made notes on a small pack of post-its about the Halloween Fair at my kids' school. So I wouldn't forget what we talked about, right? Wouldn't you know that this morning I coudn't remember where I put the damn pack of notes? I need notes to tell me where I put the other notes.
They need to embed them with little GPS tracking devices . . .
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HHCats - May you have 100 more anniversaries!
Joe - Only one to go! How did she do with SEs? I started Arimidex 3 days ago, exactly 5 weeks since last chemo.
Hortense - Great hair, I am jealous!
Question: Anyone here doing rads after double-mast and no node involvement?0
