Why was I stronger DURING treatment than I am now?
Comments
-
Hi everyone,
Peggy I so relate to your limiting things in each day to maybe three. I had a good day yesterday, actually did some work and then met two friends, one for coffee and the other for lunch and then helped her with a display in the local mall of her photography she is selling. I had an invite last night for a ladies night with a bunch of women in my town. I was really looking forward to it - had made my dish to share ahead of time and everything.
Well, I got home at 5:00 and by 6:30 when I went into the bathroom to "freshen up" my makeup I just burst into tears. I was BEAT and realized there was no way I could go. I felt awful because just the day before I told my friend who was hosting it how much I was looking forward to it, and I was but, I just couldn't add that to an already long day. Took off the makeup and heated up the dish I had made in advance for my husband and I for dinner and went to bed early.
Today I volunteered for a Turkey Trot in our community that I have helped with the results for years with. It is a run to raise money for our local school. As my husband read off the names and the times people ran I couldn't believe how many mistakes I kept making, kept having to say - spell that again. Yikes, I don't think my brain has fully recovered from the chemo yet.
Anyway, as Janet said - it is encouraging that at least we are out and doing things more than we used to and in general things are better....slowly.
I so love hearing from all of you. What a gift this is for me to know there are others who truly understand what this strange phase of recovery is like.
Take care -0 -
JulieHo - I get you on the overdoing things and having to call "time". I've been limiting myself to three things and discovering that what I don't get done doesn't seem to matter in the big picture anyway. Last night everyone in this house went to bed by 8:30! The kids were tired from skating, hockey and cleaning. My husband and I were just tired from running around to the kid activities and life in general.
Here's a strange question. TMI sort of question. Does anyone here seem to need to pee constantly some days? I don't know if it's a chemo thing, an anxiety thing, or what. I'm on metformin (triple negs respond well to metformin in terms of recurrance) so I don't think I am suddenly diabetic. But it's weird. I was up at least 4 times last night and I even went to the walk-in clinic and had a test for a UTI which came back negative initially but since I am showing "symptoms" (frequently in the washroom) - they gave me antibiotics anyway. Just wondering if anyone else has this weird issue. I'm postmenopausal now (wiped out at 43 due to chemo) and have no clue if this is something that happens then?
I am taking a day off from the supplements I take (although I have taken them for months now and suddenly this is an issue) - to see if I notice a change.
We are now going to the my husband's work kids' christmas party. We will be some of the oldest parents in the room. I got dressed, did makeup, hated my short hair, asked my husband if I looked old and he said "No. Just wait how old we look when we get to the party!" LOL Gotta love him for cracking me up all the time.
Hugs
Robin0 -
Robin, yes to the frequent bathroom trips day and night. According to Dr. Oz, post-menopausal women are unable to fully empty their bladders and always have bladders that are half full. That lack of estrogen really messes it up for us. My husband can sleep all night with nary a trip to the potty. He has all his hormones and then some. I am so envious. There is a nasal spray being tested now for people who have multiple trips at night. Hope it will work for all us sufferers.0 -
Hello all, just want to chime in regarding over extending oneself. I really don't know until an hour before an event (even a walk invitation) if I am up to the task. I had to learn to let go of others' expectations and really give this gift of making last minute choices to myself. I am going to stick to this lesson now and for the rest of my days on earth. I feel less stressed when my phone vibrates (yes vibrates....can't handle the volume of a ring....haha). It's true. Some days things can be going along fine and then....bam. Exhaustion and emotions take over and remind me (us) that I'm overdoing it.
0 -
Honeybair - thank you thank you thank you. I feel so much better now. I also found that today (after we got home) just resting on the couch with my husband relaxed me and I didn't have to go. I am a stress-puppy and postmenopausal - not a good combination, I think. Of course, who thinks they will be postmenopausal at 44. I used to joke to my husband that there would be hell to pay when I started menopause just at the time my girls got their periods! I guess that is not going to happen at least. LOL
Today was a good day. The party pretty much sucked though. It has always been a major holiday highlight but this year they changed venues and formats and pretty much it sucked. My kids were asking to leave not 45 minutes in. Not like them. So we just came home and everyone played, decorated and watched football. It was major downtime and we all loved it. I told my husband we need more of this and he said "yes, it's called downtime and we need to do it more". So guess what? Downtime is now a priority. During the HOLIDAY season, no less. Maybe just maybe we might enjoy the holidays more. Who knows.
I did have some moments of worry today. I have to confess this. I think with the holidays it is going to happen a bit more too. It just hit me twice today - what if it comes back? What will we do? What would my kids do without a mom? When I shared this with my husband he was really good about it. He told me I was normal and we knew all along this year was going to be harder in some ways than last year. So he ran through all the positives for me and then told me that I need to count each day of good health as being one day further away from it. He looked at me and said "it's hard - but if it came back in two years would you want to know that you spent two years worrying about it?" When I told him I got all that but it is not that easy and he said he totally understood because he worries too and he really worries about me worrying. I told him I wasn't so sure I was doing enough to keep a recurrence at bay and he told me that I have changed my life in so many ways and been do busy doing that that it probably seems just like life now.
Off to start getting the kids organized for an early bed time.
Robin0 -
I feel so similar to all of you. I feel good most of the time but the rest of the time I feel lost and scared. It is not their fault but people seem to think that when treatment ends that is it, we are fine. There is no way they could know. Today I was at Starbucks and there was a very pretty woman there about my age losing her mind because they made her drink wrong. She still continued to act terrible even after the staff apologized and refunded her money. I honestly felt like going up to her and ripping off my wig and showing her what it is like to have something real to worry about!!
I have had several people in my life that I feel like I can no longer connect with emotionally anymore as they just were not there for me during treatment. The old me would feel bad about feeling that way as I was such a pleaser before. The new me doesn't care! I try to put myself first more now and I think that is a good thing.
I am so grateful for these boards ! They are a lifesaver !0 -
Just today I was out to lunch with a friend, I was telling her a bit about how don't have stamina, you know the drill, all of the problems Then on top it all I have had blood in my urine for two weeks and i'm constantly on the verge of panic over it. I'm on cipro on top of it all and it makes me dizzy. My grandson was born 4 days ago so I'm trying my best to help out. My friend looked at me and said "You seem fine now". I was feeling fine, sitting there. At that moment. But it made me feel as though she thought I was a malingerer. That's the hard part about all of this. People kind of doubt and don't understand. I does help an awful lot to read these threads and know that there are others who understand. How it's not constant and it's not something necessarily observable. When people can't SEE they think it's not real.
Petrified about tomorrow. Going to gyne. I'm almost as afraid of the tests as of the possible diagnosis!0 -
Timbuktu,
Will be thinking about you at gynae tomorrow. just been through this whole s***t too, it 's horrid having yet more tests and possible dx's.
Just get in there, stare at the ceiling! and get out. Let us know how you are.0 -
Timbuktu
Hope everything goes well for you tomorrow.0 -
Thanks guys.. Winter how did it turn out?? I'll remember your advice, just get through it,
Have to go back to that kind of thinking...this moment is ok....don't think about the next moment!0 -
Timbuktu,
Still waiting for final path, but looks like endometrial cyst, had bi-lateral salpingo oophrectomy, (but one ovary had twisted on the tube and died), other was all stuck down by appendix adhesions (removed when I was 11) as was part of my urether stuck too. Also transobdurator tape for wee-ing problems (interesting what I was reading here about full bladders and post-men women). Also I had a posterior repair as my bowel had flopped (apparently childbirth there)
By the time they were done, I felt like I had just given birth!, I think I might have an infection now, will spare those details!
Honestly, Timbuktu that's how I got through the whole thing, the tests (both ways!) and another MRI, I just stared at a spot on the ceiling, and gritted my teeth. Went in/Got out.
I know it's horrid, and I feel for you.0 -
Were you bleeding? Were you in pain? This is a very strange thing. They did find white blood cells and bacteria so there is a uti. But no pain. And the antibiotic hasn't stopped the bleeding.
You are stronger than you think winter. I've been reading about your emotional distress but now that you've describe what you've been through, I think you've done really really well! Impressive! I feel as though I'm on the verge of panic so I've been trying to keep busy and distract myselt but every now and then worse case scenerio takes over. But...now that I think of it...what you had was not cancer! As awful as it was, and it truly does sound awful, no cancer was found, right? But what a nightmare! I need to find a spot and stare!0 -
Timbuktu,
No NO cancer! (but will not feel 100%) happy until I get my full path report . I had a bleed (before bc) dx. I think it might have been the endo cyst as my periods had stopped, but it was like a period. Had an MRI was told was b9 cyst and to leave it. I was not happy with this especially after bc dx and wanted it out. Fortunately, this gynae agreed as he could not be sure what it was, even after an MRI. Yes, I did have pain on the right side, I think that was the cyst as they told me on scan it looked 'full of blood' Maybe it had burst a bit? - Who knows? but it was painful.
Yes, I certainly have been very distressed and still feel so. I am mentally/physically exhausted and very fearful for the future, and the effect of cancer on my 2 boys. I have had a difficult weekend, not able to get out of bed, so weary do I feel. I have awful rib pain too (don't know what that is??) waiting to speak to my bcn about that. I am 52 and feel (and look) ancient. But what can I do? My sleep is all over the place 4:43am in the UK now.
I wonder what is going on for you? UTI's are very common, but from what I can glean it might have been there some time? Of course it needs checking out and you are right to do that, but hold off on another cancer dx!! if that's what you are thinking - as you say look at all my gynae stuff and no cancer! - NO cancer. You are so understandably having a wobble......
Take deep breaths in/out I read some where that it's not possible to have panicky feelings whilst practising this, and stare at the ceiling, find that spot (if they give you an exam). It will be over and you will be ok.0 -
Very helpful to hear this winter. Once we have a cancer diagnosis I think that's the first thing we think of. I do feel more hopeful now,
I really appreciate your sharing your experience. Anxiety and anticipation are truly the worst things. What will happen will happen and all of this fear won't change a thing,0 -
wintersocks and Timbuktu, wow you are both so incredible. I am sending positive thoughts your way for the Gyn visit. Breathe!!!
Wintersocks you have been through the ringer. Glad h r at least on the recuperating side of things. Take it easy and build back up your strength.
Test of any kind are scary, I have a spinal, thoracic and cervical MRI tomorrow night and am freaking out for no real reason.
Please let us know how it goes today Timbuktu and I hope that you get plenty of rest and feel better soon Wintersocks.
Sending love and light to both of you.
Julieho0 -
Timbuktu, thanks so much for the encouragement! My husband was also very encouraging this weekend. I told him I didn't know if it made sense for me to continue the program; it's eating into my work time as well as any housework time. And he reminded me that I had good reasons for enrolling in the program to begin with. When I repeated that it meant less money and less time to help around the house, he didn't seem to think that was a big deal at all. I'm putting off the most rigorous classes until next year, just to make sure I have a bit more energy back and a bit more balance. Hopefully.
Thinking of you today at your appointment...hope all goes well.
My biggest priority right now is to find balance and routine. Otherwise, whatever I'm doing, I feel guilty that I'm not doing 3 other things at the same time (this neurosis predates cancer, sad to say!). But if I let go of the notion that I'll be at my desk at 8am, and allow myself to start my workday at 10am, then I don't feel guilty that I'm on the treadmill at 8:30.
I like the notion of limiting the number of things I'll do in one day. I always try to cram 27 hours of activity into 16 waking hours, and you know how well that works out. I think I'm also overcompensating for a year a half of having only about 2 hours a day when I had enough energy to do squat. I have to face the fact that I can't make up that "lost" time.0 -
and wishing you good luck on the mri! I had a hard night of not much sleep. I'm sorry that you have been freaking out but it does make me feel a bit more normal. It's an odd world isn't it? Before we even know what's wrong we go through Hell dreading the tests themselves and anticipating the outcome. Now I really know the meaning of the old saying, "old age isn't for sissies"!0 -
cf, I have to tell you my experience. Eight years ago both of my parents died within 2 months of each other. No one was there for them or for me. I was totally shattered. I could not see how I could go on. My parents were the type of people who were always there for everyone. They put others first, always, just as I had done. But when I saw what happened, how life ends and no one cares, I decided it was time to make some of my dreams come true, if even just to survive. I'd always wanted to read the Great Books but of course everything else always came first. My husband is an artist and professor and his painting pushed everything and everyone aside. My kids of course, had a million needs. Money was tight, always. But after what I'd been through and what I saw I decided to join a Great Books program at the University. I wanted some answers about life and I needed some distraction from life. It was expensive! I felt SOOO guilty, taking money from the family budget and time from the family's needs.
My youngest was 14 and pretty busy on her own. But I decided to put myself and my dream and my needs FIRST! Damn it, life goes by in a flash.
I decided it was time for me to count to myself. I could not have predicted the outcome. It changed my life entirely. Not only was it heaven to read these great books, not only was it enlightening to learn that there was nothing new under the sun, but I discovered myself! I thought I was stupid and worthless as that's the way I was treated by my family. Just worthless. In the beginning I was afraid to raise my hand in class as everyone seemed so brilliant. I just sat there. Then, at some point, I started participating. And being appreciated for the first time! I couldn't believe it.
They didn't think I was stupid or crazy and they didn't dismiss what I said as my husband always had. It was better than therapy! It was worth every penny and more.
The odd thing that happened, by being so selfish, by indulging my dream, I started to feel better about myself. and my husband started treating me differently! All of those years of sacrificing myself and my desires made me a doormat to everyone. But putting myself first gained me respect! What a shock! He started bragging about me to his relatives and acquaintances. It was so counter intuitive. Here I thought I'd been the perfect wife by putting him and everyone first. Instead, he valued me more for putting myself first!
So, I learned...don't give up your dream! Fulfill yourself. In the end whatever dishes that weren't cleaned or whatever laundry sat there while I read, were eventually cleaned and put away. No one remembers that. But what I and everyone else remembers is what I accomplished and they can't take that away from me. On top of all of that I made many really good and devoted friends who value me and who I love.
So go for it cf! Whatever fills your heart will send good vibes out to everyone around you. Your happiness will make others happy too.
And the effort will be well worth it!0 -
Thank you so much! What wonderful encouragement. I remember seeing an ad for a Great Books course once and thinking it would be wonderful. I love to read, everything from Great Books to not-so-great. ;-) Last year I read Moby Dick; now I'm reading a graphic novel. All over the map.
It's funny, but I think you may be on to something with how your husband gave you more respect when you took care of yourself and followed your dream. My stepdaughter is a musician and he has been supportive to the point of being pushy (he keeps pushing her to spend time on her music but she's frittering her time away getting a math degree at a major university...a very ironic parent/child interaction!). I've had my own design business but he's always been sort of indifferent about it. But I think he'd get a kick out of My Wife the Artist. Certainly moreso than My Wife the Cancer Patient.
It's after noon, and I haven't done any "real" work yet today. It's been very slow this fall, slowest it's been in 10 years in business. I can always spend time on my marketing; I'm sure business is slow because I hardly did any marketing for 3 years. You reap what you sow. I sowed nothing, and now the harvest is a phone that doesn't ring.
But does it matter? The world didn't end when I didn't have the energy to vacuum for a year. Like you said, the work somehow gets done. Maybe standards get a little lower in some ways as the bar gets raised elsewhere. It's more important to me now to keep up with exercise and meditation than to have clean floors. I worked all summer redesigning my website and writing new content. Will it really make any difference if I spend the afternoon buying shoes instead of editing my LinkedIn profile?
I think I just answered my own question. There's a sale at Macy's. Mama needs a new pair of shoes.0 -
LOL!0 -
Shoppygirl - I laughed when I read your post. I know just what you mean about people getting all hot and bothered over the stupidest things. You should have whipped off your wig - the Starbucks personnel would have probably given you free drinks for a month! I think putting ourselves first is a big step. It is easy to do that when we are undergoing treatment because honestly it is so consuming that just happens but I found I fell into the old patterns once I recovered from surgery and started to look like myself again. But looks are deceiving. I don't feel like my old self anymore but I'm not sure how I feel sometimes. I told my husband yesterday that I sometimes don't feel like I fit into the family anymore - that my place changed and I'm not sure I like that. He was shocked because he thinks the family IS me. I am the glue. I kept us together (actually he's wrong because I think it was him) during treatment and I kept our lives as normal as possible. I made treatment normal. But I don't feel like that.
I am not sure what I am supposed to feel like but today was a strange day. We think I got poisoned at the Christmas party yesterday (I woke up in the middle of the night sick) so instead of going to my French class and working out - I stayed in bed with my cat. And you know what? Shhhhh.
I LOVED EVERY MINUTE OF IT. Except for the part where I felt sick! I snuggled, did a couple of loads of laundry, surfed the net, cancelled a few social engagements, and pretty much just sat with the cat. At 2, I got up and went out to the store and to Starbucks to buy a giftcard for one of my son's robotics teachers, then grabbed the kids from school. I actually felt like being a mom after school. Not worn out and grouchy. I made dinner, fed the kids and read with the two youngest ones. There might be something to this limiting of the daily schedule . . .
Tomorrow I'm back on the exercise wagon and getting snow tires on. Off to Ohio for Thanksgiving this Thursday snow or no snow. Can't wait to see my parents - despite their constant "How ARE you?" routine. They mean well but they have no clue how annoying that question is.
I hate to say it but I think I have to work on balance. Cfdr, said she can't get the housework done and I was stressing about that, too. But today I looked at my messy house and thought I just don't care. I did French and snuggled with my cat while the dishes sat in the sink . . .and last time I checked - no one else seemed to care!0 -
The silver lining for me during chemo was that it was totally acceptable to lie on the sofa all day reading a novel. And then do it again the next day. I reminded myself that there were times in my past when I was so overworked that the thought of being able to lie on the sofa all day was like a fantasy of winning the lottery.
I've been thinking a lot lately about guilt, and how it can spoil an otherwise good moment. Think about it: if you are on a diet and feel tempted to eat a piece of chocolate cake, and you only have two bites but stop because you feel guilty, then guilt has served a worthwhile purpose by keeping you focused on the bigger picture. But if you eat the entire slice of cake and feel guilty the entire time, then the whole point of eating the cake is lost. You haven't felt the pleasure, noticed how delicious chocolate cake can be. Guilt has spoiled an otherwise good indulgence.
I find that I can control my guilt by trusting myself. I know that even if I have a slice of chocolate cake, it will end there. I won't have another slice, and another. And I know that about myself.
But for some reason (childhood memories of my mother calling me "lazy", perhaps?) I have much more difficulty escaping guilt for relaxing and enjoying myself. Yesterday I laid down for a bit in the afternoon, played a game of sudoku, and I tried to let go of the guilt I felt in doing that. And part of it is trusting that when I have more energy and focus, I will sit at my desk for hours, to the point of forgetting to eat lunch. So if there's a day when I don't have that motivation, it's OK to treat myself like a cell phone and recharge.0 -
Shoppygirl....like you, I am always amazed when people makes asses of themselves and berate people who work in any line of customer service. That physically beautiful, but really ugly woman does need a dosage of what real concern is all about.
Today I actually baked cranberry pecan bread. I juiced a fresh orange, grated the orange zest, the whole nine yards. My hubby cannot wait to eat it. I have promised him a fruitcake this week as well as pumpkin muffins. I have not baked anything in years but just want to do something special for him since he has done everything for me beginning last January. My energy is still lacking, but each day is better than the one before.
Anyone having trouble getting appointment scheduling done in doctor's offices? What is this business of just having voice mail on? Three times I have tried to make an appointment to visit a gynecologist and still no connection. She misses me and I miss her. My BS has insisted that I get other parts checked out. This is the first week in months that we have no doctor's visits. What a relief.
Wishing all of you a wonderful Thanksgiving.0 -
Hello everyone,
Just a quick note of thanks on this eve of our U.S. Thanksgiving. Thank you for being here, for your post, for sharing your struggles and your triumphs which help me each day walk through this post-treatment world with whatever grace I can find.
We are so fortunate to have a place that is safe for us to talk to one another. I feel so incredibly close to each of you even though we live not only miles apart but, countries apart - we share and identify with each of our struggles and celebrate together each of our good days.
Happy Thanksgiving to all of you.
With love and gratitude,
Julieho0 -
Beautiful, Julieho. You are a gifted writer and each of your posts are very heartfelt. You took the words right out of my mouth in this last post.
I, too, am grateful for each and every one of you.
Even though it would be easy to think about the troubles we have all been through in the recent days/weeks/months/years, we are all still here and able to make a difference in eachother's lives and that is truly something for which we should be thankful.
Happy Thanksgiving and safe travels to all!
Rabbit0 -
Happy Thanksgiving to all on this thread. I haven't posted in awhile but have been reading through and continue to learn from everyone who contributes.0 -
Julieho,
What a lovely post. It is wonderful that we share this thread. Happy Thanksgiving (I am not sure what/why you celebrate this, but I just about to Google it!)0 -
Juileho - I second and third what was said by Rabbit and Wintersocks. Beautiful post. Beautifully written and a wonderful sentiment. I feel very close to the women on this thread and am so grateful for being able to hear, and to share. Happy Thanksgiving...
Janet0 -
janet,i'm kind of in shock. I'm so miserable i'vebeen taking on line depression tests. They ask if you've had a traumatic event recently. Well, yeah I guess so but it's beginning to not feel so recent. A good friend has been pushing me to see somenone and get on meds. I asked (demanded) aa separation from my husband. I want my own place. then i decided to catch up on this thread and I see your post with your request for a divorce and I look at your dates and they are the same as mine. Can all this be from breast cancer? Maybe! I want my own place but I' petrified that i'll need help. But i'm also petrified that the unhappiness will make me sick again. Today was Thanksgiving and i actually slept almost the entire day! We had dinner but the rest of the time I escaped into sleep. it was great but weird. Whew. It really helped to read your post. no one gets it, it even me. It really helps to know that others feel the same. I feel that t this point life should be normal but it's not. My stamina is nil. I make plans and push and then wonk, I fall asleep! bottom line, it's as though I am still sick! Thanks so much for sharing!0 -
Timbuktu I was taking online depression tests this time last year too and spent a lot of last Christmas depressed as hell ....I won´t go in to loads of details but the upshot is I found out a few months later it was the FEMARA....!!!!! It stopped me from sleeping properly, and just made everything hurt and negative. I just got more and more depressed and felt ancient...so I stopped taking it and hey presto I felt ok after a few weeks...... I am now on Aromasin and that allows me to sleep better and I feel ok emotionally.....so I think you need to look at your anti hormonals.......
I also recently had one hypnotherapy session and during that, and about the only thing I remember from it, was the message to put past upset and trauma behind me and since then I have felt a lot brighter....its almost like a switch was clicked and although I still think about things and have low feelings they are nowhere near as traumatic or energy sapping......and some days I don´t even think about BC all day.......and I have more energy......
Its H O R R I B L E feeling the way you do, I remember feeling so detached from everyone and the world in general, send you a hug....be ultra kind to yourself0
