Why was I stronger DURING treatment than I am now?
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It has been a while since I have posted...just read through a lot of the posts and was comforted to see familiar names.
I had a hysterectomy in April and decided to keep one ovary so that I could still feel "normal". I had huge fibroids that were not showing prior to tamoxifen...I went back to work in July and it's been a struggle. I am now in extreme pain (rotator cuff on my left shoulder) as this side has been compensating for my right BC side. I start pt tonight. I'm just so fed up, so tired, feeling like what else....DH is trying to be supporting..but kind of sucking at it. Pain is wearing me out and fear of losing my job is real. I'm tired of eating drugs...and feeling whiny.
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Tired of being tired is something I really recognise but since I have been taking soya isoflavones I do feel a lot less aged.........
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Lily...are the soy isoflavones safe to take?
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Well apparently so as they are meant to be the "good" oestrogen................I avoided them for 3 years but eventually my naturopathic Onc was so insistent I had the test done and it said they were killing cáncer cells in me.....and since then I have had a lot less side effects ........and I was highly oestrogen positive............but I am no expert so please do check it out for your individual case............
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Myraknits, I think most of us here have felt all the emotions you describe. I wish people who haven't been through this wouldn't say things like, "You'll be back to your old self." For one thing, I'm not sure anyone who's been through this wringer, as you put it, comes out out unchanged. For me at least, my old self is gone. There's a new body that's missing pieces and has a different biochemistry due to hormones lost and medications gained with both their intended effects and side effects. I don't trust my body anymore. Like you, I've always had healthy habits. I never felt immortal, but I figured I'd probably avoid the big stuff until I was older. I was 56 when diagnosed. Not old. I still get days when I'm struck with feelings of depression and anger that this all happened. Pinktober, as some of us call breast cancer awareness month, doesn't help. I was very aware, damn it! I did everything I was supposed to do and still ended up with Stage III before it was found. So there's grieving to be done for all these losses and just like with the death of someone you love, nobody can tell you how long that will take. I'm glad you found a little bit of a silver lining in your new softness and kindness.
JJ, good to hear from you. I'm glad that at least you got to keep an ovary.
Lily, I'm glad the soy is helping you. I'm a bit leary. I have a new MO though. Maybe I'll ask her.
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Good Morning,
I just checked in here to see how people are doing and I'm really glad I did. It's a reminder that even though I'm managing quite nicely, I still have a solid foot in the BC world. The tiredness, the joint pain, the sadness, (and bitchiness) are all part of my routine, and when I feel like I'm 150 years old, I can think ' Oh yeah, cancer, that's why I feel so crummy at this moment.'
Myraknits -you're still fresh out of the gate and I relate to everything that you're saying. Letting go of the ' invincible' beliefs, feeling like you'll never regain your strength, missing your team, and having serious health issues for the first time in your life, and knowing that people who haven't been through treatment won't fully understand what it's like. You're right, there is no such thing as getting back to normal. That ship has sailed, sister. But don't give up on regaining your strength. It's very possible to rebuild your your strength after treatment. It may be slow, and require more patience than your had in your other life - but try not to get discouraged. The two friends of mine in their 40's that went through cancer ended up stronger and more fearless than ever. One ran a marathon, and the other opened an art gallery. My strength is just fine, though some things have to be modified. I had a double mastectomy with reconstruction (DIEP), so my upper body range of motion is somewhat compromised. So, I find other things to do. The physical scars are most definitely there but the scars and I have an excellent relationship. I respect them immensely, and they have contributed to the new me. I cried when I found out my radiation tattoos would be permanent, but now I like them. After my reconstruction I covered my bathroom mirror so I wouldn't see myself, but now, three years later, I think my boobs are a medical marvel and am neither shy, nor boastful. They are just mine.
I missed my team too. I missed the encouragement, and the structure, and a place where I was understood. I loved the funny and compassionate nurses that would cover me with warm blankets and bring me a juice box. Not matter how brutal the treatments were, it was also a sweet time for me. I was surrounded by kindness and low expectations. All I had to do was show up, eat right, and try to get some rest. And even if my wig was on sideways, and I had lipstick smeared across my face, someone would always put their arm around me and tell me that I was brave.
Getting back into the real word sucked. I could go on for hours, but I won't. Let me just say that it was a very fragile time and when I went back to work, or to my familiar (but unfamiliar) life I felt like my steps were shakey, and I was wearing someone else's clothes, sitting at someone else's desk, and talking about a whole lot of stuff that I couldn't give a f*ck about. Everything was out of proportion.
I'm also slipping of the healthy eating bandwagon, but 'hearing' form everyone has made me want to kickstart a better diet. After my diagnosis I was living on kale, and salmon, and blueberries. In fact - that was pretty much my diet before I got cancer, so what does that say? But recently I've been adding more sugar and other bad things, so that is going to stop.
I'm also going to look into anything that makes me less tired. And I can't figure out if the tiredness is from post cancer, or just being in my 50's. Regardless , I'm going to work harder to stay strong and sane, complete with melt downs, bad days, moments of calm, and all sorts of imperfections.
I send you all a warm embrace-
Janet
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Hello, I can totally relate. I recently had my 5 year exam one side. I have my mastectomy 3 months apart. I thought I would be happy but it seems like my life just was so different before the BC. I miss my old self. I am have tired to move forward and was doing well. Then end up having a other issues with fibroids. Heavy bleeding only after having a UAE. I had a hysterectomy ultimately after a failed UAE. I am fine now with the exception of frequent urination. The said it may been masked by the uterus . Going to see urogynecologist next again. I had the UAE to help with frequent urination supposedly caused by the fibroids. They degraded and urination stopped, I traded that for heavy bleeding. Since the already were breaking down I was no longer a candidate for a myeomectomy ( sp?) . So I lost my uterus too. Awful.
Meanwhile, my mother has lung cancer and I have been helping ( the only one helping) with that. She is getting immunotherapy,but had has chemo, surgery and multiple procedures. So IDK. I feel like it has been nothing but stress. I know that the multiple absences from work impacted my career. So my career was impacted. Which people tell me not to worry about, but work/ career is important since I am taking care of my myself. I have friends, but my family support is lacking.
I am not married and didn't have children. So I kind of feel like DCIS was bad trajectory. I am 46 now, but this all started at 41. I feel like over half,of my 40s have been spent going to doctors, like literally all the time. Now with my mother I go every 2 weeks. Her cancer was diagnosed a year after I finished my treatment. I am grateful that she doing better than last year this time. Last year was rough.
I was really fortunate to have great doctors. My one doctor is leaving so I won't see her anymore. I am grateful to have had her all 5 years.
So I dunno. Another day. I remember being optimistic during recovery process. It has been a long season of too much. The worst part is meeting friends that have had babies and second babies and marriages, and I am literally doing the same thing i was doing 5 years ago. Going to the doctor.
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greenpeace, I'm sorry about your mother. I'm glad she's doing better now and hope that continues. I can imagine how stressful this has been for you. My mother died a year and a half ago. Not cancer. She was just really old (97) and went downhill after a GI infection that winter. It was her time, but difficult nonetheless. I still miss her greatly. I also know what you mean about constantly going to doctors. I feel like that's where I spend half my life. And I spend the other half fighting the after effects of cancer treatment and side effects of meds. I'm 59 and have been dealing with one cancer or another since I was 45. BC has by far been the worst. I sympathize with your work issues too. Having to take so much time off for cancer treatment torpedoed what was left of my career. There were other issues that contributed too, but being sick was the last straw. I hope yours stays on track.
Janet, I loved what you said, "Oh yeah. Cancer. That's why I feel so crummy." Yeah. Exactly. No energy at all. I wish I could be one of those inspiring women who goes through all this then runs a marathon or starts a business, but I'm just not. I also wish I could have "an excellent relationship" with my scars as you said. I tolerate mine. I hated seeing myself in the mirror before recon. It got better after, but there are still bad moments even though I have what my new MO called "one of the best reconstruction jobs" she'd ever seen. I appreciate that, but I still have a very visible flap of skin from my back in the middle of one boob plus other scars. I've covered part of it with a tattoo. Hah! That's another oddity. I never, ever wanted a tattoo. I positively hated the stupid little radiation tattoos. So, who is this person who got a chickadee and some flowers tattooed on her foob? Couldn't be me!
Today, I went into a tailspin because of an article about women choosing to go flat that was posted in another forum I belong to.The women interviewed and some of the women in the forum were saying things like why would anyone put themselves through the multiple surgeries reconstruction requires and that they weren't buying into the "paternalistic" idea of feminine beauty that our society foists on us. Etc. etc. Oh. Now I feel bad for not being ok with going flat. I thought I might be ok with it. I'm a t-shirts and jeans girl not a girly girl. As far as the paternalistic idea of feminine beauty, hell, I don't even wear makeup so I don't think anybody can accuse me of buying into that. No makeup, no high heels, rarely a dress or skirt, and I always tell my stylist to give me a low maintenance haircut. I also DETEST pink! But I was definitely not ok with going flat. I tried for a year and half, but I hated it. I felt like I wanted to crawl out of my skin. I didn't feel like I was in my own body. I hated prostheses and hated that cancer was determining what clothes I needed to wear to feel normal. I guess if I was stronger, I wouldn't have cared, but having a surgeon cut me another time or two was preferable to feeling like I wanted to take a knife and obliterate my chest myself. Yes, that's how I felt. I'm happy for anyone who is fine going flat and can spare themselves more surgery, but I'm not one of them. So why did that article make me feel like a weakling?
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Hi
I finished my chemo in June and radiation in August. My onc. wrote me off work til Jan 2017 but my husband got packaged off last sept and it took a year for him to find a job. He found one in sept and with xmas coming I knew I had to go back early. I have a bunch of vacation days so I work every other day right now. Tuesday was my first day back. I want to go back to a normal routine but I know things will never be the same. I am really hoping work does not treat me like a fine piece of china. I am a cashier in an outdoor store. It feels go to be back but I consistently worry will it return. If it does then I will fight it again but this feeling like walking on eggshells all the time it too much some days. I'm glad for this board it has been so helpful to chat with people who have or are going through this.
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blamoms, I hope you do ok with work, and nobody treats you like you'll break. The fear that the cancer will return does ease up with time. At least, I don't think about it that much anymore. Now and then, sure, but not daily. I hope your husband's new job is going well too. Stability is helpful for one's state of mind.
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Green peace,
I am retired but I tell people I have a second career now: seeing doctors! I so relate to your tiredness of all these doctors, for you and for you Mom! Wishing you the energy you need each day.
Hugs,
Peggy
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Hi Peggysull,
Me too!
1 GP appt and 1 hospital. Next week the same. and I'm still working.
Hope you are ok and nice to 'see' you again.
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Me too, I am at the hospital at least twice a month sometimes every week, i try and think its good i have the option but boy i am tired of constant appointments,,,,,
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I've also joined the "second career" club! And I still have my first career. Well, job. I wouldn't really call it a career. Between medical appointments and doing all the other things necessary (PT exercises, working on my leg lymphedema, relaxation exercises, aerobic exercise, etc. for general fitness), I feel like maintaining this body is definitely a full time job.
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Just recovering from calcific tendonitis in my shoulder....it was the worst pain I've had to date...so bad my legs were shaking... I'm 45 feeling like 85 some days. I'm really hoping I just feel good for the holidays and that everyone else is too!!!!
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JJ, I'm glad to hear you speaking of that pain in the past tense. Recover quickly! I hope you feel great for the holidays.
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JJOntario - I just googled calcific tendonitis. How horrible! Hopefully your recovery will continue and you'll start to feel like 44 again soon.
I've been spending a lot of time at the doctor too. Nothing alarming, but I'd had peculiar pains in my chest and arm. Of course I assumed it was a heart attack, and practically planned my own funeral, but I've had all the chest scans and tests, and they found nothing more than scar tissue. Still - I have to catch my breath with my phone rings and call display says 'Unknown' or 'Doctor So and So'. It takes me back the days when I was waiting for my diagnosis. It's funny, just when I think that everything is behind me, it just takes one 'private caller' for all sort of memories to come rushing back.
Blamoms - How's it going at work? Don't worry too much about the walking on eggshell feeling - it won't stick around forever. You're still so new, fresh out of the nest. Don't expect anything to feel normal right away, it may take a few more months before you start feeling like you're on solid ground. And your normal routine probably won't feel at all normal. When I went back to work I felt like I was wearing someone else's clothes and sitting at someone else's desk. It was a strange and lonely time. My support 'team' from the hospital wasn't around and the people in my life, though sympathetic, had no f*cking idea what I was going through. They all thought that I was fine because I was finished treatment, but inside I was pretty fragile. I hope it's going well of you, but if you hit any rough patches, just know that the invisible post treatment healing also takes a lot of time.
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hi everyone this is my first time posting to this group. I was first diagnosed in 2001 rt mastectomy, then diagnosed in 2007 left mastectomy and then 2012 mbc in 8 locations. I went thru 6 round chemo and herceptin. I have been on herceptin every 3 weeks since. it was awhile that people ask me how I was and i couldn't say cured, but my scans came back clear. i learnt to say i am NED ( no evidence of disease ). but after 3 years every pain makes me scared. I just keep telling myself that I am 69 and it's natural aches. i never felt pain when i was diagnosed. will i recognize it when it comes back.
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B"H
pgc091 - you really are a warrior! i met this nice woman who was doing RADS at the same time as me - we finished "together" this week - and we shared the absolute fear of how will we ever muster up the emotional strength to go thru all of this again if G-d forbid the BC "returns" - and look at all you have been thru! you are a true warrior and in my prayers that you don't have to ever go thru it again - only good and healthy and feeling good for you!!!
Janet_M: so perfectly said - the invisible post treatment healing also takes a lot of time .... even the time going thru DX and treatment was HARD because most didn't want to hear or know about anything and were just very happy that I put on a happy face as if "all was well"... and now thank G-d that i have finished the RADS that is ewxactly how I feel - that this post treatment healing will take time and is essential because it encompasses i think also "dealing" with the DX itself and what the body (and spirit) has gone through.... a lot of vulneravility but I hope a lot of "digesting" what has been and healing from it all.... tnx so much for that term "invisible healing" - will help me lots when I feel super vulnerable and everyone is acting like "everything is fine! you are healthy! as if nothing had ever happened!".....
it's hard and scary - but hopefully a time to recognize the good that has come out of all of this and learn more about the new friends and the new directions opening up if I find the courage to do so!!!
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Thereisnodespair - When it comes to 'invisible healing' , there is an absence of acknowledgement from the medical institutions. Nobody told me that it was going to be so hard. They tell you that your cancer free and then you leave the hospital fit yourself back into your old life, only your not the same person and it isn't the same fit. Once I was cancer free everyone told me how great it was that I was back to normal and how cute I looked with curly grey hair (Also a lie).
So here are two other things I want to bring to the table. Like you said, it is in essential process and it does take time. A lot of time. I found I was trying to process what had happened while trying to rebuild a foundation that had been ripped from under me. Its a long process. Allow yourself the time. Time for good days, and time for bad days.
The second thing is that is a non linear process. Just when you think you've got it licked, you may fall flat on your ass. And then ( in my case) you'll cry a lot then get back up and keep rebuilding. Don't let the bad days discourage you. Invisible healing isn't a straightforward process so if you're feeling fragile and you want to lock your front door, and crawl under your duvet with a bucket of ice cream and a box of kleenex and cry yourself to sleep, allow yourself to do it. Cancer was hard work and healing can be even harder.
And, I just thought of a third thing. Some people, when describing them whole cancer thing, like to use the word 'journey'. I am not one of them. I like to refer to it as a 'Rodeo'. Complete with bruises, falling, and hanging on for dear life. And I have to give credit to the word 'rodeo' a fabulous ballsy woman who I 'met' on this thread several years ago. Last I heard she was doing great and having a fabulous, fearless, ride.
Happy Healing, and a great weekend to everyone.
Janet
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Going back to my BS next week for the results of my latest mammo and then to my GP to see what to with my shoulders and neck. My good side is burning...by the end of the day I'm a puddle. Cure cancer my a$$, find the cure for pain and we'd have a winner....I'm tired of always fighting something and its wearing me down. Most pain meds make me loopy and then you can't function. I'm also kind of meh lately as my cancerversary is next Thursday marking 2 yrs. it feels that was really long time ago....
We all seem to be fighting something. On a positive note, I'm done Christmas shopping 😀 Kate Spade and Lululemon are wrapped and waiting for my DD's.
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B"H
Janet_M : tnx so much for all you wrote, it is very important advice for all of us REALLY.... and maybe the most important "point" of this website, because the doctors (hopefully) etc. can give the medical advice and explanations, but no one I guess can understand what comes after the (hopefully) final stage of treatment.
So right about the challenge of simultaneously trying to get some kind of a grip on what we have been through since DX (more accurately, since we suspected BC) and trying to "rebuild a foundation".... such an accurate description! So many things trying to grasp - come to terms with what we "lost" which includes our previous health and may also include redefining friendships (with those who were amazingly there for us and those who...) and how we should devote our time (perhaps less work, perhaps more family time, perhaps more time in nature etc.)...
loved the thing about the rodeo.... i also often thing of it really as a journey - not that this whole thing is not rocky as riding on a wild horse - because i personally think it is not something that "just happened" but rather it happened for a reason and i hope "it" will take me (all of us) to a happier, healthier and more loving and fulfilling place...
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It has been a long time since I have posted here. I have occasionally come back to read & keep up. I have been trying to live back in my old life, and pretend this cancer crap is over. Yeah right. Not sure why I thought I could fool myself into thinking I can finally "move on." So the myth of moving on hasn't really worked.
My neuropathy has been really bad in my hands the past three to four weeks. Dropping a lot of things, constant pain in my hands, ring and pinky fingers on both hands, and sometimes my middle finger & up my arm. It is making me really depressed, I just want to sleep. I did acupuncture last year, and that must have helped at the time. I think it is the season change that is the trigger right now. I have a doc appointment tomorrow to see about new ideas to try. Mostly the only that works is my heating blanket & wine. You can see how that is a problem during the day right? Aspirin, Advil & hydrocodone do not touch it.
My sister had biopsies on both sides today. Fingers crossed until her results come in on Wednesday.
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I started using a cannabis balm a while ago and it has given me more pain relief (radiotherapy caused) than anything else with no side effects - its just cannabis oil mixed with coconut oil......you can take it orally too but I have not done that yet........gave me some hope and sense of power.....
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Smart Ass Smurf--I have terrible neuropathy in my feet, completely numb on bottom of feet. Electrical stimulation acupuncture helped a lot but I had to go at least every two weeks for the improvement continues. We've retired and I can't afford it anymore (going to PT for balance therapy that Medicare covers instead). If you can afford it, maybe you could give acupuncture again?
Hugs, Peggy
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Thank you for responses. I have made an acupuncture appt & also an emg appt to see if it is other nerve damage. My insurance changes January 1, so I am hopeful to get enough started that payment will continue.
I am also having revision of my right implant on 12/22 to get that out of the way before the insurance change.
My sister was diagnosed on Monday with stage zero breast cancer...on the one hand, I am so happy that her docs took our history seriously enough to put her on a six month regimen, on the other I am so sad she is going down this path. I hate all of it.
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Myraknits: I have been having a lot of these same feelings. Am running out right now but want to add more later. Thank you to everyone here for their honest expressions...it helps immeasurably to know I'm not alone.
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thanks Lily55 & PeggySull. I did not see your posts before I responded with my second post...not sure why. I am thinking about the oil option. Hoping to figure out if there is some other natural way I can fix this. A bit at my wits end!
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Just stopped in to say hello to everyone. I'm sorry to hear all of you still struggle. I guess it's just the way it is. I've always hated the "journey" metaphor. If it's a journey, I've sure picked up some crappy souvenirs. I like the rodeo idea. I've also thought of it as a never ending roller coaster. I'm doing ok at the moment. I do have some neuropathy as some of you have mentioned. It's not too bad yet. Just annoying. More annoying is the lymphedema in my leg from my first rodeo - ovarian cancer in 2003. It's not as bad now as it is during the summer, but of course, the neuropathy is worse in the cold weather. Pick your poison. What's got me a bit unnerved is that a woman in another thread mentioned a local recurrence in the skin and lat flap. She has the same kind of cancer I have. I also had a lat flap. I was given to understand that a local recurrence was very unlikely. Now I wonder if that's really the case. Great. So now, I guess I need to inspect my foobs for lumps. Her recurrence was found on a physical exam. The physical exams I've had have been rather cursory. I guess because a local recurrence isn't supposed to happen.
I hope everyone was able to enjoy the holidays. Here's wishing us all some peace and decent health in the new year.
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All: I attended a lovely tea this afternoon but came home feeling blue. I was right in the middle of treatment at last year's annual tea, given by a particular friend. The event probably triggered memories of dx, treatment, fear, etc. I have heard that, for many of us, "moving past" this is a long process....Didn't realize how long. I am still so scared and "not myself." Anxious and depressed. Thought I was doing such a good job feeling my feelings at the time dx and treatment, and had no idea how strong the "afterward" emotions would be, and what a different person I would feel like.
I lost my first husband to brain cancer, and now my brother-in-law, my twin sister's husband, has been diagnosed with metastatic melanoma. Somehow, I feel like I've turned from still feeling young/like a kid (I'm 54) to a whole other ballgame. I KNOW this will get better....it's just hard being in this emotional place right now.
Am also getting closer to resuming an AI drug after stopping it in September when anxiety and depression hit. Now I am on meds for the latter, hoping they'll keep me on even keel even as AI drug depletes estrogen. Though my recurrence risk has been called "very low," I'd still feel safer taking the drug, if I can tolerate it mood-wise.
Am trying to be patient with myself, but it's hard. Last year, when rads ended in February, I'd thought I'd be feeling much better by the holidays and that life would return to "normal." I didn't and it hasn't. What a process. Am trying to accept the lessons and/but pray that a new, happier normal will emerge. Success stories so wanted and welcomed!
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