Why was I stronger DURING treatment than I am now?
Comments
-
Girl53: We all "heal" in different ways and at different times. I have been on these on these wonderful board! In fact, since 2013. Patience and Hope and Love.We are for YOU!0
-
Girl 53--Many of us have PTSD as result of cancer and treatment. Anniversaries are among many "triggers" for flashbacks any time after treatment. What helps me in those moments are strong sensory things (like holding a frozen orange) that anchor me to the present. I also use the mantra, "that was then and this is now." An experienced PTSD therapist was a big help to me.
Hugs,
Peggy
0 -
Hi to everyone...it's also been a while since I've posted on this thread. Things have settled down a bit for me. I went through calcific tendinitis in my shoulder last October which I attributed to the tamoxifen. It was the worst pain I've ever had including natural childbirth..I just seen my MO last week. I asked him my risk level if I decided not to take the tamoxifen. He has always stressed "we got it early, no worries, relax" but this visit he kind of freaked and wanted me on it right away. So glad my DH was there for this appointment. He then started talking about my hysterectomy and that once my 5 yr stint with tamoxifen is done he wants me to do another 5 yrs but maybe on something else depending on whether I've hit menopause yet. I'm kind of angry because I kept my ovary with the assumption that I was so low risk. It's like I've been in a bubble and he kind of popped it.
On another note my DH has been great. He's had zero alcohol in 6 months and life has been great. I look back to how rough and rocky it was while going through all this and I'm a bit sad that he couldn't get his act together then but I'm still thrilled he is doing this well. There are so many posts on here about how great everyone's DH was. Mine was there, he went to appointments, he drove me, he slept beside me, but he wasn't present. It's been a rough road but at least I feel like we are driving on pavement together in the same car instead of on gravel alone.
I'm also seriously debating on whether to see a PS for my symmetry problem. My BC side now sits quite higher. I can't wear any sort of tops with stripes on it and it really shows in a bathing suit. I'm using little foam pads in my bra to pad it out. It sounds so trivial but it bugs me and then I get mad at myself because it sounds so trivial compared to what others have gone through.
Enough of a rant for me. It's so nice to see some familiar names on here and I'm glad we still check in...
0 -
Hi JJ- I don't think any of it sounds trivial. Don't be hard on yourself for feeling frustrated about the way your body has changed as a result of all this. We have all been there. What sounds amazing to me is how you and your DH have stayed on the journey together. Alcohol free for 6 months is big and must be a relief for you Too. My DH also copes w alcohol and tobacco. I know he is running his own cancer risk and I worry about him being here for our 3 kids. Tanks for sharing something good that has come your way.0
-
JJ - I don't think it sounds trivial either. You know the old saying 'If it ain't broke, don't fix it? '. Well, if it is broke, do fix it. If everything isn't back where you want it, put it back where it's supposed to be. After going so far with treatments and surgery it's great not to have anything that keeps on bugging you. When I was making my decision about how to proceed with reconstruction surgery (with the help of a therapist) I narrowed it down to my top three priorities, and one of them was symmetry. It was non-negotiable. I don't even know why it was so important - I just knew that it mattered to me. And as people have pointed out - we are entirely an entirely symmetrical species, right down to our lungs and eyeballs. Symmetry is natural, we're born with it. And after having the DIEP surgery, my naked boobs are a little funny looking and they're slightly different shapes and sizes, but by God - they are totally on the same plane and when I wear a bra they look fantastic. But the best thing is, I never think about changing them. And I think that's a good thing to strive for - to NOT have something bugging you. And I wish you weren't mad at yourself - you deserve to feel great.
Also - Loved hearing that you and DH are doing well. That's a major improvement. Must have been a truly rocky road not having him be present when you needed him the most.
(I have a great partner and it was still a challenge. On good days DH was 'Dear Husband', and on bad days he was 'Dick Head'. But most days were good)
I hope you and your DH stay together in one car on the pavement. You really created a lovely visual. Its so much better than the gravel road.
Janet
0 -
Very helpful! Thank you!!!
0 -
Janet - thank you for your post about symmetry, so good to know someone else feels the same - I hate my lack of symmetry, makes me feel abnormal.......and so few people seem to have any idea just how much it affects me......I am still fighting to get reconstruction....ad my need and drive for symmetry is one of the key motivators.............
0 -
Hi everyone.I love seeing some very familiar names.I am reminded of the love and support I felt since my diagnosis in 2011.When I lost my best friend in 2014 I was able to move forward because of you.Thank you so much from the depths of my soul.In a nutshell, I started gaining a lot of weight after that and had some scary bloodwork and high blood pressure and just couldn't find my emotional footing without my friend for a while.I was taken off of hormone blockers because of the blookwork/joint pain and made some unsuccessful attempts at weight loss.The joint pain was too much to bear to exercise much.In July I had gastric sleeve surgery and have lost 70 pounds so far.I feel so much better.No more joint pain, normal BP, off meds and happy and hopeful.Until Thursday when my mammogram on my remaining breast warranted a biopsy this Tuesday.We never know the curves, peaks and valleys life will take, do we?I have a good feeling that it will be OK and perhaps the weight loss resulted in a growth in calcification or something.To all the newbies, welcome and I am so happy you found this thread.This group of awesome ladies of support.Just wanted to say hello, I'm still here, still hopeful and will always be thankful for you.I'll let you know how it goes with the biopsy.Bless you.Love, Purl
0 -
Purl, wishing you the best! So many things show up on mammograms that are false positives. You are in my pocket!
Hugs,
Peggy
0 -
Purl51,
That's a bit stressful, waiting for a biopsy. Hopefully all will be well. Thinking of you.
0 -
PeggySull ~ Thanks for the pocket-ride.
Winter ~ I still have the wildflower pic you sent and look at it often, especially this week.
Hope you are both doing well.
0 -
Hey Purl I was so glad to see you back and then I read your post.............sad to see another scare but trust yourself, I have had few but trust my dog, who has always been right in her sensing of cáncer cells, although I did not know that before! So if she comes near all of me I know I am ok.........and hope I never again have her avoiding a part of me and giving me THAT look......
Glad you are still around and your weight loss is fabulous, well done xx
0 -
Hi Lily! Thank you... I need a dog! In more ways than one. They are awesome. Cats too. Thanks for your wishes. It's weird. I'm the same weight now and am as happy as when I was diagnosed in 2011 so I'm having flashbacks. While going through treatment, etc. I was nervous about feeling too happy and healthy for this reason. Crazy. I'll let you know how it goes. 3.5 hours, 2 minutes until biopsy but who is counting? So nice to see your name (and that wonderful familiar cat pic above it). Love, Purl ~ Hope you are well. AND Happy V Day if you celebrate it. I eat a piece of sugar free chocolate.
0 -
Hi Purl I live with 6 animals (cats and dogs) but last few months am struggling emotionally,,,,,,,its been nearly 5 years, still un reconstructed, and aware I have aged health wise on the hormone blockers......have various other conditions to deal with now too and feeling VERY alone.......and old......have been hitting alcohol a lot more as just need to blot out, cannot think of a single aspect of my life that is not complicated or needs extra energy to deal with.........all I want is a woman cave with llightly lapping waves, a drip feed of wáter and liquid food, a sun bed and a cuddly dog..........and no one else........
Does this ever get easier I feel like I have failed
0 -
I can see that this post has been active a very long time...I am just finishing radiation next week (diagnosed in June 2016 with IIIA IDC, ER+, PR+, Her2+). My birthday was on Tuesday and I found that the day before, I was sliding downwards. I had a big meltdown Wednesday. My husband has been wonderful and is also a 'linear' guy...meaning when he sees me 'go back' to my bad emotional spaces, he sometimes doesn't understand why. There are triggers around us and going through all this has been unbelievable (as you all know). I think my meltdown happened for a few reasons, including realizing I'm coming out from treatment and that 'clock' is ticking on how well I do. My birthday was emotional because of the occasion of it in and of itself, but also because it attracts a lot of attention too from well wishers. And I generally go up and down anyhow. I started a local FB group for bc people and I think while that is really great, it can be a trigger for me too. Coming here helps me out. It is one of the only places (besides my new group) where I feel totally understood inside and out. So my note is not adding any new information, but thank you for this community to 'nestle into' as I try to look at this next transition where I feel particularly vulnerable again.
Carolyn
0 -
Hi Lily.I hope your six fur babies bring you comfort.I miss having one and hope to adopt in the Spring.I'm sorry you are not feeling well physically and emotionally.That sure be a hard combo.As you can read on my last post, I had weight loss surgery in July and I haven't had alcohol since then.I may in the future but realize that I used it as an escape and thought it helped my grief.No matter how many times I told myself that having that wine/beer wasn't going to take away my grief I kept thinking it helped in those moments I was sipping.It felt like I was taking care of myself and couldn't really think of anything that would feel that comforting to me.I have substituted sugar now I think but feel healthier.Emotionally I feel more "even" and don't have as many moments that I feel I need to numb myself.I also watch way too much news too.All in all, step by step, I'll find some more joy in my days and hopefully return to activities that used to bring me those feelings.I wish for you more days of feeling better and having the energy to do some special things for you.I sure wish I lived closer to you.Life can feel a bit lonely at times, especially when we aren't feeling healthy.Thinking about you….. Love, PurlYou are worth every effort to find a place and time for the beauty inside.
Also, Welcome to you Carolyn; I'm glad you found this thread.
0 -
Hi all...so I am hoping to eventually move on ...not sure if this is the right post area but any suggestions are welcome. I finished chemo (no rads) Valentines day in 2013 and I am still dealing with several side effects (Taxotere and Cytoxan double dose approach) including fatigue, muscle weakness (where I have some muscles left), depressed mood and overall lack of motivation. I find people generally irritating, busy surroundings are confusing, difficulty with focus and concentration, rapid heart rates, very distractible, shortness of breath (non of this is new), forgetful, feet and hands neuropathy as well as significant arthritis everywhere that is left. I am 50.
I have heard all the standard stuff, eat better, exercise, etc...I know this can help if I ever get motivated to do it...but it feels like more than this to me...like I am missing something. I can account for the depressed mood and have been dealing with this....So I thought I would ask you all to see if you have been feeling fundamentally crummy and what if anything you have tried that works. I do tend to be a positive person and I really kicked butt during treatment, even when I ended up in the hospital after the first round of chemo with a blood count of 500 and near fatal, practically nonexistent blood pressure.
Not my intent to depress anyone ...just need some supportive guidance if there is any other there!! Thanks!
0 -
B"H
Ella1 - i am sure other women here can give you solid advice on what to do to get motivated... personally I had the rads and no chemo... when i finished treatment i also had depression to some degree, a great deal of fatigue that would show up at any unexpected time of the day, i had distanced myself from a number of friends who had hurt me during the time i needed them most... and i had terrible lack of focus... the latter was SO difficult for me, i kept saying now i finally understand what kids with learning disabilities suffer, lack of focus and being unable to concentrate and feel most of the time like there is a heavy fog in my brain.... so what i did want to say, the amazing thing is, at least part of it REALLY goes away as time passes... it just suddenly hit me a couple of days ago, that more or less my focus is back, that i am accomplishing things a few months or even a few weeks ago was way beyond my capacity... and with it too, somehow, gave "forgiveness" for my friends - don't feel at this point i can be close to them as i was before, but have let go of the anger and a lot of the hurt as well...
it certainly does not go away... the meds have their effect on us, etc. etc. but i did want to share with you and anyone else with the same state of mind - time really does heal a lot of it i think.... when the focus returns (not at all of it at once...) then motivation and ability to get a grip on the things we hope to change and improve in our lives also returns....
it really is all about listening to our bodies (and souls) and letting go of things that are too much for us at a specific time, which helps chase away the despression and frustration. trust that things will truly improve, it is going to get better, and down the road you will find there are more and more "good days" filling your life - more days when the fatigue is at a minimum, days when focussing is not a challenge, when you will be smiling more and not even thinking about the BC ALL the time...
sure you will get more practical advice from all the sweet women here - this is just an outloud ((hug)) reminding you that even at this point you don't have the strength or motivation to get up and walk a few miles, etc. etc. (all good and important things surely) it will return slowly but surely...
0 -
Dear Ella,
I'm sorry to have taken so long to write back. You are not alone. As you can see I'm rather new to the BC journey. I'm amazed by all that you and so many women here have been through. Everything that you described about decreased motivation is familiar to me. I've recently started seeing an acupuncturist who is also a naturopath. She is conservative with treatment but I have seen improvement in some of my symptoms and as a result have been able to start exercising again.
I'm curious about your hormone therapy and if you think that could be related to your low energy levels?
Be well, my friend.0 -
Ella - Sorry that you're in a situation where you've come to this thread - but if you read through, there are words of wisdom to be found from some very impressive ladies. And from some very tired ones too.
Several years ago, these boards saved my life. I was diagnosed in 2011, had a double lumpectomy, chemo, rads, and then dble mastectomy with DIEP reconstruction in 2013. Eighteen months ago I got my nipples. It's been a long road with many ups and downs. A 'rodeo', not a 'journey'.
But I can honestly say that the worst part was, hands down, the year following the end of my treatment. Mentally I completely fell apart, and the more I tried resist, the more helpless I felt. I too kicked butt during treatment and felt like I was one new breed of Wonder Woman. My inner warrior was mighty and powerful and I charged through my treatment with optimism and self reliance. And then my inner warrior laid down her sword. And then I fell apart. With that came feelings of helplessness and sadness, and more than anything, I was so lonely. Even though I have a great partner, and friends, and a mom and sister that would (and did) do anything for me, I felt completely alone. My dear ones were celebrating the fact that I was 'done' and 'back to normal' when I was anything but. It was a brutal rollercoaster and I only started healing after I left myself completely collapse. A lot of crying, and lot of time alone, a lot of meltdowns, and then slowly, miraculously, - rebuilding.
Recovery comes at a different speed for everyone. And the post treatment recovery is so difficult because it is invisible. And invisible healing is a b*tch. There are two things I learned. Firstly, and most importantly (for me) , invisible healing is a non-linear process. Just when you start to feel the relief of being yourself again, you'll get knocked back down for God knows how long. And then you have to start the climb all over again. It is punishing, and it is unfair. So forget fair. Nothing is fair. Just keep hanging onto the knowledge that this is a temporary state, and you're doing your best, and its okay to cry.
Secondly, you'll never be back to normal. Even though you're still the person you were before the diagnosis, and the same person you'll be in another five years, it will be a new normal. Your brain and body have to make room for all that has happened. And in my experience - for that to happen - you have to allow space for the changes. For the grief, the anger, the ENORMOUS amount of effort it takes to get through a bad day, and the effort if took to get through treatment and act like it was just another day in order save a loved one's feelings.
I'm afraid I do't have any solutions for your feelings of depression, and 'missing something'. I wish I did - but I'm just letting you know that you are not alone, and what you are going through is completely valid. Everyone has a a different way of dealing with these feelings. Mine was to fall apart frequently. And I'm not kidding. I'm used to being in control and I'm also a people pleaser. Falling apart was new to me, but I needed to do it. I also stopped being such a people pleaser, and somehow, during cancer, learned to set boundaries about what I am willing to do. (That was a silver lining)
If you find people irritating it's because they are. After cancer I found that most people are completely self absorbed and have very little to say that is thoughtful or interesting. I've weeded out some friends and hung on to others who have amazed me. I have developed a very low tolerance for small talk, and have also found that I have lost my filter. I have gone as far to warn people not to ask my opinion unless they want an honest answer. I have no interest/abilityenergy in sugar-coating things anymore (ex: yes, you're getting fat, and no I don't like your husband).
I'm also on board with losing focus, and finding busy surroundings confusing. I actually left a restaurant last week because it was too loud and I felt panicky. Well, not exactly panicky - more like I wanted to crawl out of my skin. My focus is limited and I get easily distracted. I don't know what to do about this. I'm trying to force myself to see my tasks through. Sometimes I just make my tasks smaller. My only solace is that I have improved - because there was a time when I could barely focus long enough to answer a question - even seeing a bird off in the distance would take me away from conversation.
Exercise worked for me. You're probably tired of hearing this, but in my case it's true. All my joint pain and crabbiness was only soothed by swimming or gentle yoga. There were some days where the thought of going out was too challenging, but I always felt better on those days were I did do something. Also,I have a dog and he saved my life. I had no choice but to take him out for a walk several times a day, and had I not had that duty, I probably wouldn't have found the motivation. It got me dressed, out, and moving, and talking to people (or not, depending on my mood). And he took me out of my own head. He's a basset hound and he's pretty lumpy, so he had a few lumps removed, and as he was all stitched up he needed constant care, and it really was the best distraction ever. It took me out of my own head. I should also mention that because as he is a basset, our walks were very very slow. But at least I was moving.
Motivation is a gift. But it does not always present itself at the right time. Often the motivation isn't there, and it's only iron will that will get things going. Or just the determination to sign up for a class, even though you don't want to. And hope that you will make it. Or reaching out to a friend - asking if they'll go for a walk, or try a meditation workshop, or painting, or something along those lines.
Another tool in my toolbox is guided meditation. I used it before my surgeries because I was terrified and didn't know how I would get through without drugs. I turned to Belleruth Naparstek, who had a 'guided meditation for successful surgery'. I was a skeptic, but it worked. She has plenty of downloads - my sister uses her for her general 'wellness' meditations', my colleague uses her for sleep, and another friend used for for childbirth.
And for the time being, lower the bar. If you're used to big projects, do small projects. If you're used to busy social situations, find a quieter route. If you're used to running, walk. Invisible healing is a marathon, not a sprint. It's long and arduous so just keeping moving forward even if your steps are tiny.
I have joint paint these days so instead of jumping out of bed, I do a grandpa shuffle until everything starts to move. That's all new, and I blame Tomoxifen and my chemo drugs. Or it could be my age. I don't know. I feel like I do most things right, and I'm still trapped int he body of a 105 yr old. I went to see my oncologist yesterday, whining about my pains, and she told me to take a break from my pills for a month so see if there are changes. I'm looking forward to the break. It'll be almost as good as going to Cuba.
So, in short, 'fundamentally crummy' pretty much sums it up ( And it would be an excellent name for an autobiography!) . However, my crumminess, which once dominated my life, is now balanced with a lot more calm, a better feeling of well being, and an inner strength that has re-established itself inside my and crabby and memory-less brain. I hope you find your way Ella1. I wish I could give you a quick answer but I don't have one. I'm sorry. But I do know that you're normal. And perhaps there are support groups in your community that can help you find your way to well being.
I wish you the best,
Janet
0 -
What a great post Janet. So eloquent, I agree with everything you say..............
0 -
Janet, beautiful as always. moving and spot on.
p,s everyone, i had my 2nd stage yesterday fat transfer, uplift and reduction and nip tattoo.
Feels like this 'journey' never stops. Another surgery and the whole raft of emotions and the feelings of what we went through since dx comes back vividly to me.
So feeling a bit down - it doesn't take much for that to happen
0 -
B"H
Wow Janet thank you so much! I so needed to hear that, amazing how all of us no matter how "different" we may be, go through the same experiences with others and ourselves as BC "women"... It helps so much to read a post like that - because it is VERY lonely to be going through all that and almost noone understanding... its so easy to fall into the feeling that we are in the wrong, we are the ones who have to apologize that everything did not immediately snap back into the "perfect" "normal" of pre-BC... So thank you so very much! Thank you for the effort of writing all that (such a well-written and inspiring post for someone who finds it difficult to focus... ) because I am sure there are many women here in such need to hear these things... thank you!
0 -
hi falconer...thank you for your kind words...I stopped taking the tamoxifen (not recommended) which, for me, was the right thing. It helped a little with mood and mobility. Still having a hard time with motivation but did buy a bike today...so we'll See! I will give it a try...sorry it took so long to get back...ella1
0 -
Hi Janet...where have you been all my Life?!
Thanks so much for your post, insights, and support. It's nice to know that these are not unusual experiences. You made me laugh out loud when you said that I find people irritating because they are! It was also nice to hear from a real person that I am not alone ...tho sorry your dealing with this too...sick of hearing from providers who don't have a full appreciation. Tho I really appreciate their knowledge and treatment!
You so nicely said everything I needed to hear..including to remember to reflect on what is going well...I do have more calm, a greater appreciation for low drama days, and beautiful spring days....
.....I went out today (after several months of thought of course) and bought a bike! Wish me luck !
0 -
I don't belong here yet as I'm just starting my rads on Monday BUT I can relate as four days after my post-op visit - when I got the fantastic news of clear margins and negative nodes - I burst into tears over breakfast. My DH was totally baffled. Why was I crying? I got good news! But I had been so calm through my tests, diagnosis and surgery that the emotions finally caught up with me. I've read elsewhere on this site that many feel set adrift after treatments are over - you lose that safety net known as the medical staff.
We each react differently but it's good to know in advance that these feelings are normal, even if it is the new normal!
MJ
0 -
Thank you so much, Janet. I agreed with everything you said. I was one of the warriors during treatment, & the year afterward was just focusing getting physical strength back. Physically I am doing very good in comparison. But I don't think I dealt with the emotional part of it all... And I had a blow up (well actually more like a cold war) with a friend end of Feb, who was very supportive during treatment. He said something off-handed & my brain got stuck on what he said, and I accuse him of not caring anymore. He didn't defend himself... & it kind of went down from there. <sigh.....> I still hope it's not the end, but I don't know what to say / do anymore...
0 -
Superius - I've had a few of those blow-ups myself. But if you don't want it to be the end - it doesn't have to be the end. I generally don't know what to say or do anymore either. Well, to be more precise, I don't know what to say or do, so I just say the most honest thing that I can, and it's often inappropriate or unexpected, and then have to deal with reactions. I feel like I do a lot of damage control just to make myself understood. Sometimes the rewards are great, and sometimes I just want to get under my duvet with a bag of chips. I'm better at rolling with it though - I don't get so anxious about saying things that are just right and I'm getting better at clearing the air. But my God, it can be exhausting!
Just this weekend I was actually told by a friend that her sister had been insulted by something I said four years ago (we haven't spoken since). She'd called several months after my diagnosis and offered to help with anything I might need, and apparently I'd said not to worry, because my real friends had already helped. I have no memory of this. Nor is it something I would normally think or say. So half of my brain wants to call and explain myself, and the other half of my brain is thinking 'Oh screw off - I was bald and on steroids so cut me some slack'.
Ella - You bought a bike! Yay - good for you! Get out there and ride!
0 -
Hi Gals,
2 weeks ago I had a massive massive row with a friend I have known over 25 years... sometimes I just don't care any more... just have to say it as it is.
0 -
Janet_M and Ella 1...I know your posts about feeling unfocused and confused, tired. lack of motivation was quite a while ago, but I had also been feeling like that and it was getting me depressed as I didn't feel as though I could do my job effectively. I was to the point where I just wanted to retire and feel better. I did go to my GP and asked about ADD and depression, wondering how I would know if I was ADD as I could not finish tasks, felt scattered and unorganized and overwhelmed and extremely tired. She did a couple of screenings, like we do with the kids I teach who may have ADD. I tried 10 mg aderall, 2x per day and it has made a world of difference. I am more focused and can get ahead of myself and finish the never ending work of a teacher. I feel calmer and not as anxious...so my depressed mood has been lifted as well. This helped me, and I just wanted to share it with you both, even though your post was back in February. Rosie
0
