Why was I stronger DURING treatment than I am now?
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Rabbit, thank you. That is very encouraging to hear. i am so glad that you started this topic. and i do find this thread to be one of the best! best wishes for all.
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Does anyone have vertigo? I have severe vertigo... I'm spinning standing, sitting or laying. It gets better but never goes away. It makes me nauseous and feeling bad. They gave me meclizine and nausea meds but it doesn't work.
Kathec, I'm suppose to be taking b6, biotin, calcium w/D, and folic. I just don't take it like I should.
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Dlia, I have not had vertigo but know several people who have (non-bc people). They all have gone to an ENT who does some positioning of their head the realign something within their inner ear. It works every time!
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Been there done that didn't work...tried some of everything. That's why I have to do the MRI on my brain tomorrow and because I have the pain in the middle of my back they will also MRI my spine.
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please please please take them. they tell you those things for a very good reason, and they dont hurt, like tamox, etc. i hope you can afford them, i dont know how it works with insurance if they prescribe them. dlia, i for sure will be taking time out from my day tomorrow to be thinking of you, with best wishes, and just to get to the bottom of this for your own peace of mind. warm wishes, and a hug for you
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Sending hugs to all who are struggling waiting for test results and dealing with the emotional and physical results of BC and treatment.
I am ten months since my last chemo and I still have neuropathy in my feet and fingers from the taxol, maybe a little better now. I still get fatigued earlier in the day than I used to.
BC finally NOT the first thing I think of each morning--I thought that day would ever come! I still am super aware of the fact that we all (including non BC people) have a limited time on earth, which actually helps me prioritize my daily life. Before BC my life could become really unbalanced, I got focused on one thing to the exclusion of other important things.
I still find myself slipping back to my old self though. Like yesterday. My daughter and grandson were here for their weekly visit. We were playing board games, etc. suddenly my grandson asked if I could come to his indoor soccer game tomorrow (I.e., today ). My heart sunk. The night before I had started an art quilt class and was eager to start working on a project. I said yes about the soccer game but underneath felt a little resentful.
This morning I realized that if I had a recurrence what I would regret is not going to his game. The art project can wait a few hours. I no longer feel resentful but am looking forward to his game. I think BC has been a blessing in at least that way. When I get tired I lose that perspective but I'm glad when it comes back.
Hugs to all,
Peggy
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Peggy, one of the things that has been challenging for me at this stage of the game--that is, once life is finally getting back to normal--is figuring out how to balance everything. I have a more predictable energy level that my first year and a half post treatment, but I'm still not what I would call a bundle of energy. I need to make more money (I'm self-employed), but I'm also trying to spend more time exercising and meditating, and finally taking over some of the cooking and cleaning that my husband handled all on his own for over two years. And like you I don't want to push my creative pursuits back to the "Someday".
I feel like I waste a lot of time, watching videos or playing games on the computer, but I also feel like I need a lot more "down time" than I used to. I try not to beat myself up about it, but let it be a reward for actually having gotten some of the other stuff accomplished.
During chemo all I could focus on was getting through the next minute, hour, day. And there is still some of that. But I also look at how far I've come in two years past chemo, and remind myself that next year this time things will be even brighter.
Unless, of course, the cancer comes back. There's always that monster lurking under the bed.
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cfdr, i am like you in that i try to get done all the things like that that you do, but still run out of energy before i run out of day! For me, the thing that i have learned is that i do try to put my creative projects first, because all my life, i have put my art on backburner, for people, careeer etc, but now it is time. and i put it off for a lot of housecleaning too which will never be done, as it is endless. so i let that go and write or draw and make something, but the problem is tamox. it completely takes away will to create, or any creative juices. i can tell, cause i have been paying very keen attention on my one month vacation from it. no peace of mind about it tho. i was supposed to start again this week, but am to see my onc next thursday, and want to talk with him about it.
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cfdr: Under the bed. I haven't thought to look there. I'm calling my Onc straight away!
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that was funny,purl51! i am calling mine,too!
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"I run out of energy before I run out of day." Exactly!
I've started getting up earlier, which helps. I find that once I've had dinner I'm not worth much, so if I can shorten that time and lengthen my pre-dinner day, I get a bit more done. Although there are also those days when I lose steam mid-day and need to lie down for a bit.
The other night I forced myself to do some drawing even though I was tired...and it worked. Told myself I'd do 30 minutes but did close to 2 hours. Of course, last night I watched videos for 2 hours and then played Candy Crush Saga for way too long...
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Peggy - I completely relate to what you said about 'slipping back into your old self', and the example of your grandson's soccer game. I can feel myself slipping sometimes, and I'm trying to be more mindful when I make decisions. My most recent example is very similar to yours. It was going to a yoga class, vs taking my nephew to a (boring) movie. I really needed to stretch and had planned my day around a favourite calss. But my sister asked me to look after my nephew. Like you, I thought about what I would prefer at the end of the day. And I wanted the memory of his little hand resting on my arm in a theatre on a Sunday afternoon, and the chance to do something together on our own. I could always stretch at home. I don't have kids, so I'm selfish, but I never want to lose sight of the fact that it's a privilege to have little people that like hanging out with me. (At least till they figure out that I'm not that cool).
I don't think about BC every morning either, but I do think about my time on earth and making time for things that matter. Consequently I have a lot of conversations in my head. When someone asks about anything to do with desire, I start thinking about 'Do I really want that', or 'Is it just habit talking? ' and how do I want my mental photo album to look at the end of the day. Some nights it's okay just to lie on the sofa rubbing cream all over myself and having a glass of wine, and other times it's important to make the effort to put on fifteen layers of clothes, and visit an old friend.
Finding balance is never straighforward. No wonder there are millions of books written about the subject. Makes me wonder what our grandparents did. Seriously. I can't imagine that they ever took much time for themselves, and I certainly can't imagine my stern Scottish granny doing a downward dog. I think her motto was 'Do what ought to be done'.
I'm very glad I live in our time where we're allowed to explore our own needs - but sometimes I think I overdo it.
I hope that everyone is having a calm and peaceful Sunday. Tim - I'm thinking of you.
Janet
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i just wanted to clarify that if i did live closer to nieces and nephews, of course, i would be choosing to be taking care of, and playing with them all day! kids, in my opinion, are one of the very best things in life. uncluttered, no judgement, just plain beautiful, joyful, enthusiastic, you know how much they can mean. my sister had 2 kids 10 years apart, and i lived with her, while she worked, and she trusted me to take care of them as much as she did, all day,all night,for the first three years of each of their lives. what a priviledge and honor that was! and i would do it again in a heartbeat! one of the very best experiences of my life. so, i hope no one took me wrong, about trying, at least, to put my creativity first in my life now. i am childless, myself, but always told my sister, that my creations are like my children, to me. janet, i love that you said "mental photo album" cause i do that at night, to kind of review my day, to see where i could have done better, and to relive for a moment, the smile of a friend who visited that day, the yumminess of an exceptionally tasty bite, and just things like that. sends me off to sleep with a calm peacefulness.
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Kathec - Good morning! I hope I didn't sound preachy when I said that it's a 'privilege to hang out with the kids'. I believe it is - but I often have to remind myself of that when it means cancelling something I'd rather be doing for me.
I really liked what you said about addressing your creativity and not putting yourself on the back burner. I truly believe that it's unhealthy to suppress your creativity. And I'm also not a fan of overdoing the back burner. You can only sit there for so long before you get burned. Sounds like your are wonderful sister and a fabulous aunt - and I bet your families mental photo albums are jammed with images of you. But good for you for doing you art. It's so important.
But there's nothing like art to release those real deep down feelings. I love it. i'm not an artist at all - but I took a painting course at the art gallery and it was fabulous. Things flew out of my hands that I didn't know were there. They weren't good - but they were mine. Mostly sketches of cows, come to think of it. And a pineapple that looked like a cereal box.
Here's a little anecdote. We were asked on day one to say why we'd enrolled in the class. There was a guy in a suit who had just come form work and he said, 'All my life I've doodled in the margins, and now I want to draw on the page'.
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wow, that is so cool, janet! show us the cows! thats funny. i was just clarifying for mainly peggy's sake, so that she wouldn't feel bad about choosing to spend time with her nephew, is all. cause we each must choose what makes us happy, and the good bit is, is when we know! i never had kids, mostly because i was i knew i was selfish & elfish, and knew it was not for me, altho i love O.P.K, (other people's kids), and i hadnt yet met a man that i wanted to breed with, till the one i met 15 yrs ago, but he was fixed! ha! prolly a good thing, we work &play well together, till bc, and i am not working again yet. mostly home restoration. that is some heavy labor, and just am not there yet. all my jobs ive ever done, could get burned scratched cut, or physically worn out, but working with materials is a great job for someone who is an artist at heart. good to meet you, have read your blog in the past,altho havent checked there for a while. i have boxes & bags of writing and poetry and journaling and stuff, so i am trying a bit to work on that. just had a month, altho i decided to turn it into, a 6 week tamox break. i dont want to start up again, till i get a chance to talk to each of my docs this coming week. you can read about what happened at the hermits thread, starting on page215 or so. i wrote a huge explanation of what happened, there, freaky and scary. maybe not 210,but certainly after. thanks!
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Janet_M: " my stern Scottish granny doing a downward dog"
Again, you made me snort at work. Yes, I'm in on a Sunday and my coworker Vicky also working today has heard many a "Janet_M" snorts from my cube, so she wasn't startled. I have (had) a stern Scottish granny, so the mental picture of my Grandma Lilly with her red hair and freckles....downward dogging, well....explains the snort. Thanks for lifting up my moments at work today.
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purl, i had a granma lily, with red hair n freckles, too??!!!?? mine was maternal. mom was an only child, so she decided to have 5! i think she was lonely. many grands for her, and great grands, too.
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kathec: If "your" Granma Lily was also born in Stirling, Scotland out of wedlock, we need to meet cuz we are "blood" sisters! We are already sisters in the true beautiful sense of the word. That's pretty amazing though. Both Lily with red hair and freckles.
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she was half french, and half irish, had a farm in missouri. but sure we are sisters! your lily was a true love child!
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I am so tired of everyone expecting me to be 'Sister Mary Sunshine' all the damn time. BC sucks and it has been harder to deal with than I could ever even begin to explain to friends and family. They all just expect me to tell them how well I am doing and smile. Which I have done. I was chastised today by one of my dearest friends. It was a fairly innocent comment that I made-so I thought, but she said I sounded resentful. (It would take way to long to explain the whole situation). Huh. Ya think? I wouldn't wish this on anyone - yet I wish they could understand. I may have won the fight for my life but the fight for my identity has just begun!
Sometimes I just need to be angry or sad. Sometimes I need to be able to say that this is not all okay with me. I am so thankful that I can come here and read what you all have shared. It's absolutely terrible that so many of us have/are going through this but it is also nice to know that there is a wonderful and caring group of ladies out there who understand. Thank you.
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Flutterbyki, I agree with you. We understand, every day, all day. Our friends & family cannot possibly understand the physical turmoil & pain, or the more disturbing aspect of our dx, the emotional part. Most my friends do not even bring it up, ever. I am still getting radiation, 9 more to go. That annoys me, they think because chemo is behind me, it's over, I'm cured.
My family is very supportive & can see how fatigued I am, they have been fantastic.
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Yes, thank goodness for all of you. Today marks 2 years since diagnosis for me. I wasn't expecting to be this emotional about it. It was sad to think I couldn't talk to my friends about it. Not their fault but they just wouldn't say the right thing, can't understand. My three adult daughters have all sought counseling after my dx so I don't dare tell them. My situation caused enough grief for them. DH is great, though. I am about to get nipples on my reconstructed breasts but the truth is, no matter how grateful I am for these soft, new ones, I miss my originals. No matter how much I embrace the new me and how far I have come and the blessings I've received, I miss the old me. Today is a deal to feel. Tomorrow I will probably be ready to move on again. I hope so.
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Jeannie, I read your post. This came up last week on another thread. I did not know what we are supposed to say...it was a 5 years post dx. Saying congrats seems odd, but everyone assured me that we are saying it to survival, not the bitch of a dx.
So, I hope you had a good evening.
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Thanks, Holeinone. I guess there isn't much to say. It's not a day to celebrate, really, just to mark. Last year I was finishing up chemo on this day. I will celebrate either the bmx day or the end of chemo, haven't decided which. And it will be low key.
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Jeannie - Two years and a day since your diagnosis. I hope today is a better one. Even if it's not, don't be hard on yourself. Moving forward is a process. And that includes good days and bad days and unpredictable emotions. I hope you feel better.
Flutter - 'Fighting for you identity' really sums things up. And it's the big invisible fight that nobody understand unless they've had to go through it. How do you explain to your nearest and dearest that everyday you have to steel yourself for battle? I remember lots of people staying 'You must be so happy you're done!'. Well, they have no clue. I was more relieved, than happy, and the relief was short lived. Just when my hair started to grow, and I was supposed to be happy, I was blindsided by then new struggle.
It did get better, but it was a rough road to get there. But only you ladies, and Jim, know how rough it was. According to friends, I 'sailed through cancer', which as we all know, is just a lot of b*llshit.
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Flutterby,
I also know what you mean. It's sort of like when someone dies in a family, everyone gathers around the one or two most affected right after the death but then later, when the deepest grieving really goes on, they are "over it" in term of being proactive in supporting this person.
For me, the hardest to deal with is my grown daughter. She has always been difficult to communicate with and critical of me over even the smallest of things, but during my diagnosis and active treatment she changed and was warm and supportive. Now that my "treatment" is diet and exercise (I'm tnbc) and my hair is beginning to look normal, she's back to her old self. I've fantasized (but would never do it) telling her the oncs are worried that my BC may be coming back just to get her to be nicer. (She's been to a couple of therapy sessions with me long ago about her attitude and it made things worse rather than better even though therapist was good). Might try again now that I'm working with a therapist who is male and has a completely different style of working than the other.
Back on topic--we understand each other here, on these forums. We know that we are all struggling to deal with the aftermath of treatment...lingering fatigue, neuropathy, anxiety, grief...the list goes on and on. We can vent our hurt feelings here without fear of being judged. I really consider these forums to be my "judgment free zones).
Hugs,
Peggy
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Speaking of fighting for your identity...yesterday, as I was blindsided by another afternoon/evening of fatigue and fog, I was reminded of the movie "Invasion of the Body Snatchers". In the movie (or the remake), people swear that those close to them are not the people they claim to be...they look exactly the same, but are not the same. They've been snatched and replaced.
I feel like that has happened to me. I look the same, but I'm not the same. I used to be a smart, focused, hard-working woman who would knock off at 2am after a 15-hour day, because I would always "stop when I got stupid" (yeah, I had some stressful jobs). But now, I get stupid at 2pm after a 5-hour day. Instead of going for a 5-mile hike, then going to a party, I go for a 5-mile hike, come home and collapse for the rest of the day, and have to soak my legs in a hot bath because I'm so sore. Physically, mentally, I'm not the same person I was before treatment.
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cfdr - That could be me! I used to be smart too. And a brilliant multi-tasker. Now, when there are intellectual conversations going on, I'm the one rocking in the corner sucking her thumb. And I don't care really. When I'm waiting at the dentists office I don't even pretend to be interested in the 'Economist' or the paper. I proudly reach for the latest Us Magazine. Focusing is hard - so I settle for easy distractions. It's getting better though, mentally. Physically I'm the same boat as you. I have the epsom baths at night cus I get so stiff, and mornings are rough. My first few steps are literally a shuffle. Even my 81 yr old mother leaps out of bed quicker than I do. I also discovered Sketchers 'air walk' which is literally like walking on air. I need to wear them in the morning until my legs stop creaking. I'm wasn't prepared for this. And the 'Polar Voretx' is making everything so much worse. -17 C here today!
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I've lurked on this thread since it started. What you all have written is soooo true.
Since finishing all treatment, I can say it's slowly getting better. I do what I want, when I want, if I don't want, doesn't happen. Lunch with a friend? Ok. A nap? Even better!
When asked how I'm doing, feeling, I lie through my teeth and say good. They really don't care, just asking to be polite. Wouldn't understand anyway.
So we come here, to save what's left of our sanity with those who get it.
Thanks
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So I call the doctors office today to get my MRI results. I leave a message for he nurse to call me back. While I am waiting I see an email on my phone that my chart had been updated with my blood test results. When I got to the website it had my last 3 results of my blood work. While I'm looking at it I notice that my Creatinine Clearance (EST), Lymphocytes - Blood, and High Lymphocyte % are all high, and Low Neutrophil. I looked it up on the computer to see what it meant. In the meantime, the nurse calls and says my MRI is good for my brain, and my back has a lot of arthritis. I asked her what about my blood test and the numbers that were high she just said don't worry about it the doctor knows and is keeping an eye on it... What if I never mentioned it, were they never going to tell me that my numbers had been up all this time... Also, when I saw the oncologist the other day she gave me the report from some other test and it showed several subcentermeter hypodensities... never said a word. The urologist's report said they saw a small cyst.... never said a word... frustrating!! Before my husband found out he had prostate cancer they kept testing him, and testing him and never said a word until one day I went to the back and asked why they kept testing him and the results keep coming back the same, are they going to do something else and that's when they did the biopsy... TOTALLY FRUSTRATED!!
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