Why was I stronger DURING treatment than I am now?
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It's true that everyone wants us to be fine. Not 'being fine' makes people uncomfortable, and it is a rare person who likes to live in discomfort. However, my friends therapist (since I don't have one of my own) says that in order to move ahead - sometimes you have to accept discomfort and learn to live with it a while.
I've realized that I too avoid discomfort in m own decision making processes. My surgery was an exception that - but mostly I like things simple and easy. If I were to make a New Year's resolution, I think that I'd want to be bolder. Not just in words, but in action.
Winter - So glad to know that you're in the home stretch. Exhaustion is normal. Also, a lot of ladies report feeling like crap around the third week post-op. Tired, cranky, depressed. So if you hit that corner, know that it's just a corner and the road ahead is much easier.
Julieho -Two miles on the treadmill! Holy cow! At your stage I was slow and hunch and moving like a little turtle on it's hind legs. Good for you - that's amazing. I'm finding winter pretty bleak too - by the way - and I have nothing much to complain about health - wise. But I LOVE knowing that the days get longer each day - even if it's just by half a minute.
Tim - F*ck! Horrendous year is right! I hope your strength comes back and exceeds expectations.
And for everyone, I hope that fabulous things happen in 2015.
Rabbit - Thank you again for opening up about your feelings three years ago, and for giving is a place where we are safe to talk, and be understood.
XO Janet
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My BMX was 12/12. I had a pile of work journals taking up room which I made the mistake of telling DH I'd read and get rid of while recovering. He made a comment about my spending all my time online ( yes I've been glued to this site for the lady. 3 weeks). I was dreaming about cancer lady night. Haven't cried yet, just consumed with information gathering to do whatever I can to prevent a recurrence and to deal with the changes in my body. Yes I'll admit I tend to research things to death which drives him crazy. - spent weeks reading about the pros and cons of brands of campers before we bought one , but it made me happy to know I had done so.
So he made the comment "I understand you had cancer, what about thinking about something else now and being productive like get rid of those journals while you are home". Hey I don't want to upset him as he is relieved that we for fit before it spread, but the fact of the matter is if I only HAD cancer I wouldn't be on this stupid Arimidex!
I've been walking to dog to exercise, listening to relaxation CDs etc too.
Can anyone relate?
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Is that l2/l2/14????
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Chloesmom not sure if you had your BMX this past Dec 2014 or 2013 but either way I think your husband is wrong to say that.
My experience has been this is a long journey that ebbs and flows in terms of my feeling like cancer and its aftermath of surgeries, side effects, treatments and enormous physical and emotional changes it brings is in the forefront of my day and focus, or is lingering in the background. But, after 2 1/2 years since diagnosis there is rarely a day it is not there on my mind at all.
And most importantly it is a process dealing with something so life altering. I have seen woman who seemingly have brushed themselves off, put it in the past and gone on like it was a memory, although I have to admit I find it hard to believe they don't have times it just hits them hard. But for the most part I have seen that we each have to process and integrate these new emotions and physical realities into a life that is changed. Not in an entirely bad way, but changed nonetheless.
I hope you are able to gain your husbands support and understanding in this. My husband has been pretty amazing but I also find that I come here, to all of you for real understanding.
Please allow yourself the time, research, rest, rejuvenation and emotional space to process all that has happened and continues to happen as a result of this diagnosis and treatment.
I often think of people who are amputees, it seems as a society we recognize that is huge and something they will likely live with forever emotionally yet women who have their Breast amputated are seen differently I think.
Come and get the support you need, share your "process" and know we are here for you.
Take care,
Julieho
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Julieho, what a very eloquent post and all that you say is so true it is just sad that others cannot see or feel empathy for all that we have been through and still are going through. I too know people who seemingly brush off their cancer experience. I am thinking of a friend who had vaginal cancer just in August and she seems full of vitality, and has many exciting plans. I just cant help thinking she is full of denial although she assures me she isn't. She didn't have chemo or rads, only surgery and apparently she believes that is the difference. but she does drink excessively (alcohol) and I mean masses of alcohol. she also has a very low chance of recurrence.
I just got a text from another friend asking if she could come round tonight. I said (reluctantly) how bout 7.30? . She text back 'I will die of boredom before then'. I felt stunned by this. I am not yet 3 weeks from Diep surgery. I have no family to help me, I cooked all my own meals. To top it off I start work tomorrow, a full on new project. But she is bored??? I text her saying actually I need to be alone as I am all done in. This kind of exchange upsets me and makes me withdraw. What is the correct response??
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Wintersocks I am beyond stunned that you can return to work already. I am the same as you, three weeks from surgery yesterday. I have no continuous energy, small spurts on occasion and then I am usually wiped out after. Please take it easy. I work from home on my computer mostly writing and I can't even do that yet as my mind just can't "focus" very long. I hope your work allows you a lot of breaks and if you need to listen to your body and go home and rest if you find it too much.
I have not seen anyone yet. I just don't have the energy and can't even fake it right now.
I think you handled your friend well. I just keep telling people when they call to make plans that I may bag out at the last minute if I am not up to it, so far that is what I have done three times now.
Now I just tell people why don't we try to make a plan in a week or so. Try to be vague so I don't disappoint myself or them.
Take care of yourself. Take it easy and don't worry at all about the "needs of others" right now.
Julieho
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winter socks....not sure if there is a correct response but you did the right thing! I found the difficult part of bc was going back into the " world" of stupid people...like I wanted to stay in my bubble of supportive family and friends....luckily my school where I teach were my greatest supporters...but you run into people that say dumb things or complain about petty crap...this is difficult to hear and be around. I have become a lot more vocal about things and less tolerant of stupidity...glad we have each other!
Happy new year of health for us all! I rang in the new year in topsail beach NC by doing the dolphin dip...a frigid 47 degree temp but warm sun shining..."sink the pink in 2015"!! A great way to say so long to 2014 and bc journey!!!
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I find I want to change everything! After all of this mess, it seems something good should happen. Some inner strength or insight that can make life better. What I can't stand is the same old same old. The stress that I feel triggered all of this.
I joined a gym today, January 1. Hard to find a spot in the parking lot! LOL!
I went on a diet.
Made an app with a therapist.
All of that strength that I found I had, to get through this...I hope to use that strength to make life worth living!
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Thanks girls,
Juliho, I have so lost track of time my Diep was 15th Dec. I think thats 3 weeks Mon?? yes, that sounds right.
I just get to feeling so disappointed when 'stupid' calls. I guess I should j6st not answer the door. I always remember you posting a pic of the dogs on your bed and was so struck at the serenity of that. Thats what I want. Sometimes I feel 'friends ' tugging at me. They don't seem to knowthey do it. I mean really, if they have all the sensitivity of an old boot is it up to me to continually point it out??
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Chloesmom, I can relate to your post. It's not all over and done with once the active treatment is done. As you mentioned there are drugs like Arimadex to be taken for years. In my case it's Tamoxifen which has given me awful mood swings. If you just had your mastectomy in December 2014, you are still in the midst of healing physically, and at least for me, the emotional healing is taking much longer. I also can relate to your "researching things to death." I'm like that too. I'm an information person. It's just the way I am. I know that all the questions I end up having drive some docs nuts, but too bad.
Julieho, you summed all of this up very well. I've known people who seem to come through cancer emotionally unscathed and in a short period of time too. Perhaps, they do all their grieving in private. I told the counselor I was seeing that I wished I could be like the women who stay flat after their mastectomy, get a fabulous tattoo then flaunt it. She said she thought a lot of that was bravado. Bottom line is we have had an amputation. It doesn't cause the disability that a limb amputation brings, but it completely changes our body shape so that it looks less female. It's something we have to deal with daily just in getting dressed. Whether other people get that or not, it's still true.
wintersocks, I think your response to your inconsiderate friend was the correct one. You told her you were too tired for company which is the truth. For heaven's sake, you're 3 weeks out from a major surgery. She should have been offering to help you not expecting you to entertain her because she was bored. Sheesh.
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Thanks for wonderful reply. Yes I'm 3 weeks post surgery. DH has been supportive with being my nurse, cook, and all the support I have needed physically. I think the issue is that I've had a lot of orthopedic surgeries and bounce back in a week. It's always been a surgery to fix something. This is a whole new ball game.
I spent the afternoon sewing pockets into my bathing suits so I can get back to the pool. Just can't imagine doing anything that takes thinking. Perhaps it is part of the grieving process or maybe left over anesthesia still in my system.
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Chloesmom, I am like you (research everything...it helps me feel like I have some measure of control), and my husband is like yours (really doesn't want to hear about it). My husband has been very supportive logistically, came to all my major appointments and chemo infusions, is OK with me semi-retiring, did pretty much all the cooking and cleaning for a couple of years. But it is difficult for him to be supportive emotionally, or to accept that this whole experience left me broken in some fundamental way.
I am 3 years post-chemo, and still battling fatigue. I have longer good stretches, but I am still ridiculously fragile: for instance, I have a mild cold now—really not much more than the sniffles and a bit of a sore throat—and I have been a basket case for hours every afternoon, too exhausted even to read. Today we took a short walk and I was on the sofa for 90 minutes afterwards...and that's after a morning of just sitting on the sofa.
I no longer talk to people about it other than a handful of close friends, and even they want to cheer me up with "we're all getting older" sort of crap. This has nothing to do with aging.
Good luck and fast healing to all of you recovering from surgery!
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Chloesmom, I think a lot of us can relate to what you said about not being able to do anything requiring thinking. I know I can. I think it comes from a lot of things - anesthesia, stress, grief, chemo. I wonder if it isn't a form of PTSD. You're also right that cancer surgery is a whole different ballgame compared to surgery to fix something.
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Winter - I was going to say that I can't believe how insensitive your friend is....but of course I can believe it! Everyone lives in different bubbles, and I'm never disappointed by the lack of sensitivity. Sounds like you handled it perfectly.
I understand what you mean about 'tugging'. I'm a people pleaser ( less so, now) and I've always tried to accommodate requests, and invitations. I find myself saying 'sure' , when what I really mean is 'no'. But then there came a time when I realized that there are no rewards for trying to please anyone, so I tried harder to say what I wanted, and let others plan accordingly. It takes practice, but it pays off. I've read and reread and book called 'the Tyranny of Niceness' and it has acted as my coach. Now when friends do the 'tugging' thing - I don't absorb it as much as I once would. They can tug all they want, but I'm not reaching for the rope.
Like everything - a work in progress. But for now, its time to put yourself first.
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Of course you have to put yourself first and have no regrets!
The funny thing is, the friend who pressed me the most, even telling me not to complete chemo so I could have some fun, put herself first. I so wanted to please her that the minute I felt I could see her I contacted her and made plans. When the time came she said she wasn't feeling well! Canceled! Still haven't heard from her!
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Timbuktu, it sounds like that was no loss.
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You know, I don't mind. She really was having trouble. Verdigo. A cold. She wasn't feeling well.
She kind of validated me. The point is, accept and take care of yourself, everyone else will!
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Tim, you are a very understanding person!
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Not really. I just know who this person is, she's well intentioned. Keeps telliing me how much she loves me and how lucky she is to have me as a friend.
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Tim - I like your point. 'Accept and take care of yourself and everyone else will'.
I guess it is up to us to show how we wish to be treated. And to set boundries, and demonstrate acceptable behaviour. Why is it that all the life lessons I've accumulated over 50 years are the same ones they teach in the first level of dog obedience school?
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This same person just emailed me. She has an extra ticket to a play and wanted me to come.
I have plans for today but that is not unusual, she has done many nice things for me.
I haven't spoken to my husband in over a week and he would never say I'm easy going...although he'd be wrong!
lol
Honestly, I am a pleaser and I tend NOT to teach people how to treat me and that's why they walk all over me.
I'm seeing a therapist this week....
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2tabbies- I am considering the LD flap surgery coming up in April/May. I figure that is the least worst of the three options my PS recommended for reconstruction with implants after my radiation. How is the recovery of your back after surgery? I am considering also having my right ovary out at the same time because of a dermoid mass on it my MO doesn't like. Would that have felt doable to you?
Chloesmom -I could not read books or retain anything new for probably 3 months. That has gone away for the most part...whatever it was, i don't want to return to that anytime soon. I am also a researcher, and it sometimes makes my husband crazy that I have to know everything I can to make educated decisions. I think it sometimes exhausts him that I cannot just accept what I am told, but I second guess all sides first...I can't rest unless I do.
As for taking care of ourselves first, I call that my cancer perk. Right now, if I don't feel up to doing something, for the most part, i do not do it (with the exception of work junk). I will never have a better excuse than cancer, might as well use it to take care of myself. I know I would bend over backward for a friend with cancer, so while I will not ask a lot of my friends, I do ask for flexibility for when I am just not up to things.
I have an appointment tomorrow to see if they can figure out what to do about being short of breath. Either radiation pneumonitis, cancer Mets, or anxiety about possible cancer Mets. I had some infiltrate & nodules in my right upper lung on recent pet scan.
There is a support group, not bc specific, that starts tomorrow, so I am going to try that too.
I wish for you all...and me too...a happier, healthier & wealthier 2015.
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Smart, the recovery from the LD flap hasn't been bad for my back. The incision is long, but didn't hurt all that much. What I really noticed on my back is that it would feel tired and achy if I sat up at the computer or at a table (I do beadwork) for very long. That's pretty much gone now. The worst part of the recovery was pain where the muscles were sutured together around the front of my rib cage right where a bra band would sit. I thought that would never go away. It didn't hurt constantly, but moving in certain ways really hurt. Rolling over in bed was very difficult. Reaching that involved twisting was another no-no. I slept propped up on a futon for a month. A lot of women use a recliner, but we don't have one. That pain finally went away somewhere between weeks 4 and 5. As far as having an ovary removed at the same time, would that be done laparoscopically? If so, I'd say it's doable. If not, I don't know. I'm not sure I'd want a major abdominal incision at the same time as a big incision on my back plus the chest incisions. Would you be doing the LD flap just on one side? That's what I had. Just an implant on the other so I only have the back incision on one side. We seem to have to choose the "least worst" of options way to often! Good luck with your decision.
I'm going to try swimming tomorrow for the first time. This will be interesting.
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Smart, we have a pretty active thread going on the LD flap reconstruction. Come on over and join us!
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Reading about unhelpful friends reminds me of a book I have titled (unfortunately, because it addresses issues with good people who unwittingly hurt others) "Nasty People." During a period when a family member was undermining me at every turn, the book was really helpful in helping me name the behaviors that hurt and respond to them in a self-nurturing and self-protective ways.
I bought another book during this time titled "Talk to me like I'm someone you love." Also helpful. I just read the title sometimes to remind me to be kinder to those I love when I'm going through a bad day.
Hugs,
Peggy
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Thats awesome that you do that peggy. sometimes a browse of my bookshelves titles have a kind of meditative effect on me, and calms me right down. It's like, my book shelves remind me of who i am, when i am my better self. : )
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OncoWarrior, I think the best thing you can do for yourself is what you are doing - talk to your counselor. I'm sure it must have something to do with bringing up emotional pain that you hadn't quite dealt with yet. Maybe subconsciously you thought you were done with cancer even in regards to anyone else getting it. I also think that you will be a big help to your friend. As you no doubt discovered, nobody understands like someone who's been there. Even if she doesn't need you to run errands or anything, your offer to be there to talk or whatever she needs surely means a lot to her. I hope she goes to your support group with you. I also hope her cancer was caught fairly early. Ovarian cancer is very curable in its early stages. I know from personal experience.
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OncoWarrior...welcome! My guess is that this is the perfect thread for the issues you presented. I say that because on this thread is the greatest group of women I have ever encountered...full of experience and compassion with no judgment whatsoever. I'm sure everyone will chime in with information to help you. So welcome, we are glad you are here.
Your experience rings very true with me. I had the same problem when friends or loved ones got sick after I did. It probably stems from the fact that you know a lot about what your friend is facing. On this thread, many of us have described our "post BC experience" as something like PTSD. We get through it and then...wham! We are hit with the emotional aspect of a cancer diagnosis and treatment and life afterwards. Like anyone who has gone through a traumatic event, similar things bring it right to the forefront of our mind over and over again. It's like we re-live it time and again.
My guess is you will summon that warrior when you see your friend and your warrior will come out just as she did when you needed her. I bet you will be totally "together" because of your warrior spirit. Your friend is very lucky to have you to lean on. Imagine what you have already done for her by providing her a prayer booklet and adding her to the prayer list. And then there are all the other plans you have to help her through this completely shi**y experience. Give yourself some credit. You can ease her burden.
Please keep in touch and let us know how you are doing. We are always here for you. By the way, I love your tagline...perky attitude...that's great!
And hello to all the other warriors out there. Love to all. Hope everyone is doing well.
Rabbit
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Warrior, you are in the right place. Your reaction seems understandable to me. I think sometimes we can keep ourselves together when we have to. We keep our head down and fight through it all, because we have to. We can't collapse. I can imagine that having battled through all of it, knowing what your friend is facing, it was a little safer for you to finally allow yourself to let go. To feel.
It sounds like you are a very caring and empathetic person. Your friend is lucky to have you. I hope you don't put too much pressure on yourself. You are there for her but you can't really
"fix" it and since she has family support she is not alone in this. Cancer is such a monster, how can we not feel for others? And of course it reminds us. I really don't think about it much anymore. I don't feel anymore. But it's all new for her and I bet it brings you back to the beginning of this awful journey.One other thing. What did the arrimidex do to your stomach? I've been on it for almost 3 years. I developed an ulcer a year ago but i didn' t think that had anything to do with the arrimidex. I also started excercizing too early and too hard after chemo and developed achilles tendonitis. I was in physical therapy for months. I just started walking on a treadmill, very slowly and only for 10 minutes at a time and still some pain has returned. I was wondering if the arrimidex might be causing this. I had a lot of joint pain from it before the tendonitis,
I have pain in my shoulder and wrist now. BC, the gift that keeps giving.
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