Why was I stronger DURING treatment than I am now?
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I feel the same way as many of you. I was diagnosed a year ago, had two surgeries, 4 months of chemo, then a month and a half of radiation, and now am on tamoxifen. I went back to work about a month ago and it's been hard, both physically and mentally. My hair still is growing back, but excruciatingly slow, four of my toe nails fell off last week, and I want to cry most days. I'm 31 and sometimes feel like my life is over or something, or what the point of fighting was in the first place. Most days I get through fine, I can push down the feelings and put on a normal face for everyone around me, but everyday is like a test. Just getting dressed every morning is a battle.
It seems ungrateful to whine and complain considering I have a good prognosis, and it helps put things into perspective when I think of some of the lifers I have met who are still going through treatment. But I'm so frustrated with my progress, and nobody really gets it. Not my family, and especially those at work..
Any tips?
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Brandyrose- I am somewhat behind you on tx, and don't have any words of wisdom. Just a sincere hug. And to tell you you aren't alone. It occurs to me that "Life" before cancer also had many ups snd downs. It's just that once we are visited by this evil, we forever have ourselves under the magnifying glass. We weren't perfect then, we aren't now.
I would say try to cut yourself a break. It's ok to have the feelings you have. It's normal. Don't try to push the feelings down. I think they get stronger and more insistent when we do that. Give them light. Look at them andacknowledge them. Then try to find something full of life you can enjoy. I'm sorry if I sound stupid or trite. I am here though. Holding your hand.
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Jackbirdie -
Thank you. It doesn't sound trite at all. I know that time heals wounds and all that, I am just getting impatient and more than a little frustrated with myself.
I thought being back at work would make things easier, get back into a routine and all that. And it has helped a bit, and I think it will get easier as it goes on.
I think we all push everything down, our emotions, fears and everything as we are going through all the treatments, just trying to survive, and once that crisis is passed, all those feelings come bubbling back up to the surface, even stronger than before. I'm just having a hard time dealing with them.
Anyways you guys are all great, and just reading that everyone has similar reactions to myself makes it a lot easier already.
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Brandyrose...I think it's like running a race through fire, you are finally at the perceived finish line and everyone's like "yay!!! Way to go!!!" And you are thinking to yourself..."omg...did I just really do that?" and you find yourself friggen exhausted. That's kind of how I feel. I hate the people who tell me I should be so happy this is "all done".
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brandyrose, I think you're right that we shove our feelings in a box during the crisis time of initial diagnosis and treatment. They tend to escape that box once the crisis is over. As Jackbirdie said, you aren't alone. It's a long haul, but we're all on it together.
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You are all amazing strong women. As I have said before, it is like some of you can read my mind. I wish things were easier for all of us.
2Tabbies - Thanks for the article on the boobs. Pretty much dead on. Also thanks for the words on my write up.
JJOntario - some days I think I could live under my covers. Don't be too hard on yourself for that feeling.
Lili, sorry to hear about the EB. That cant help the energy levels or the mood. That is just too much at once. Double not fair.
Brandyrose - it isn't whining or complaining. You have been through a lot. I think your John Wayne quote sort of gets at it for me...just trying to do things even with the anxiety, fear, dread is half the battle. I have no good answers. When I let it get on top of me, I get caught up in nothing being the way it was before diagnosis. I try not to pack up and live in that place too long because it makes me so miserable. I am doing my best to find things to bring me joy. Some days I am not sure what it will be, but I am trying new things for my mind, body, and soul...no one thing has made me super excited. I try to figure out what makes me the most insane at the time & do something for that. Like...I do not feel feminine (my hair, no boobs, my clothes), so I have decided to keep my nails painted all the time. I have a hard time calming my mind....I am trying yoga, have joined a Young Cancer Survivors group (specifically breast cancer), and I am reading a lot again. I also have started a little garden of pots on my patio with tomatoes, mint, basil, and some other veggies. The damn things are growing despite my lack of knowledge. It makes me smile. I don't know if any of that helps.
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There are days I'd like to hide under the covers too. The days when I feel like I might burst into tears at any moment are the worst. I never do break down, but I feel like I might. I haven't found anything that helps except trying to distract myself with something I enjoy which is hard when I have to go to work. Tells you a little about how much I enjoy my job. ;-)
Smart, you've got some great coping mechanisms! May your garden continue to grow!
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Smart! You really are smart lol.
Everything you said has hit home with me. I don't feel feminine so I always wear earrings. And I'm actually headed to yoga class as we speak. I guess it just seems that in addition to the normal struggles all people go through,now there is just that much more. More insecurity, and stress.
I hear what your saying. I joined a dragon boating team, and it helps as many women on the team are survivors.
And I love lazy days of summer. There are just those few days where I get so frustrated that I could scream because I just don't feel understood.
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Brandyrose - It hurts my heart to know that you are only 31 years old and have been through so much. I'm 52, and was diagnosed three years ago - so as someone who is old and wiser (not by choice) I'm going to tell you a few things. Firstly healing is not a linear process, and just because you are out of the hospital system doesn't make things easier. In fact, it makes things harder. Now we're left with all the invisible healing, and no one to guide us through all the emotional land mines along the way. Secondly, there is no 'getting back to normal'. There is no getting back to anything. There is only moving ahead and it is a slow wobbly process. . 'Normal' is going to be redefined over the next few months, and it's going to suck, and it's really lonely, but there is an excellent chance that once your back on your feet you'll be stronger than ever. Thirdly - nobody gets it. Nobody. Those that love you will be so relieved that you're 'done; that they will expect to pick up where they left off. Your treatment was probably very hard on them, and they hated to see you suffer, and theywant to get back in their comfort zone - and want that for you as well. Lastly - you know that whole thing about 'being grateful just to be alive'? That's b*llshit. Of course we're happy to be alive, but we're also allowed to be exhausted, confused, depressed, crabby, scared, and angry. The gratefulness will show up when it needs to - but for now, there's a whole load of emotions that you have to sort through as you navigate your way back/forward/sideways to a place where you're happy.
I spent a lot of time under my duvet feeling like I was supposed to be grateful and wondering what was wrong with me. I know now there was nothing wrong with me. I was just in the midst of the mental breakdown that was necessary (for me) to start building.
I'm going to send you two articles that I think you may enjoy reading. One is mine - an essay about the invisible healing. And the other is from a young writer in the New York Times who summed up the whole 'what the f*ck?' feeling you get after your treatment is 'over'.
You asked for tips - here's mine. Don't be hard on yourself, and don't try to be the person your family and friends expect you to be. Accept all your tears, and sadness, and don't fight the desire to lie on the sofa under a dog blanket watching Dancing With the Stars drinking a glass of wine (my personal favourite)
http://www.cbcn.ca/index.php?pageaction=content.pa...
http://well.blogs.nytimes.com/2015/03/16/lost-in-t...
Janet
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I loved your reply, Janet. You are so right. I tried the link to your essay, but the site was redesigned and the link no longer works. Could you possibly see if you can find the new one? I would love to read it.
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brandyrose, I can vouch for every word that Janet said. All true.
Janet, well said as usual. I'm 58 so even older. I don't know about wiser, but at least with my share of experience. I'm off to subscribe to you blog.
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Gypsyjo -
Thanks for your interest - I'm trying to resend. Hopefully this works. I love this topic by the way - to more accurately - I love having people to talk to about this topic.
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Janet....you really said it all. Not one person every told me that I might feel this way after treatment and it's so great to have you guys here that get it. You feel you should be so thrilled that the appts have slowed down etc....but I find myself evaluating my life through different eyes.
Bosum Blues - through my experience with my DH (together for 24 yrs)... It can be great to have someone hold your hand but don't think it is all roses. It's been bumpy ...for me anyway. He doesn't get why I'm feeling this way, why I'm not more excited to jump back into things. It can be frustrating.
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Janet - you really get what I am feeling. Thank you so much for that. It has been lonely and my friends/family just want me to be myself again. I feel as if they are just as tired of all the hard stuff as I am, and want their comfort zone as you said. Same goes for everyone at my work. They expect me to be just the same as I was before, and that's lonely as well.. But I like your advice a lot. I have been pushing myself so hard, to get back to work, to get back in shape, and to feel better about everything. But it's been frustrating.
Bosom blues - I'm not in a relationship, haven't been in a few years. Since this has happened though, I've decided I don't want to be alone anymore. But that's hard too, since I feel uglier then ever before. And I'm impatient.
I will check out those essays next.. Thank you all!
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Hi again, so that first link still doesn't work, but I checked out the second one. I have actually read it before, but I read it again and loved it. It makes me feel immeasurably better knowing that others feel the same that I do. I think I might look into joining a support group after all. Where I live is quite small, so I don't know if there is one but I'll look.
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Janet- so nicely said and written. Thank you for sharing one of your favorite topics.
I am single, and have been separated almost 7 years, and am finally finalizing a divorce. I have never regretted being alone. Yes it was hard taking care of myself after surgery (and those blasted drains).
BUT- every time I hear about a man leaving a woman when she was down, abusing her verbally for gaining weight, or just in general being a selfish asshole, I thank my lucky stars to be alone. I am my only priority, and nobody is dragging me down. Being with a mean, weak man will not make things easier. It won't make you feel better. It will feel worse. Reach out to friends, old or new, in person, or here on bco, and learn what real love and support is like.
Rare is the man that handles his partners' illnesses and disabilities well. They just don't seem to be cut out for it. But that does not mean you have to go through dx, tx, and beyond without feeling love and support. I have many good male friendships. I am certainly not a man hater. But these threads are littered with sad tales of women being left, or threatened to be left. Wondering why they are not loved and cherished. Wondering why they are still cleaning the house, making dinner and having sex with him when it hurts. That's not love, and it's not support. You can learn to give these things to yourself. Therapy would be an excellent place to start to learn your value. Many cancer centers have help like this.
I can only offer you a gentle hug and a promise that life can be better for you. Really
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Jackbirdie,
what a great post about the man - thing. I think your analysis is so accurate. It made me feel better reading this. I remember before being dx Coeliac as was so very ill with a 3 year old and a newborn. I was weighing 6 stone and desperately trying to find out why I felt so ill.
My ex partner was, crawling all over me expecting..... I remember feeling so utterly desperate. The he walked out and left me with the boys age 3 and 14 months, and took a 19 year old out to dinner.....
Ridiculous, as it seems I took him back after 4 years and he walked out again one night, just left and never came back....
I am so so glad I wasn't with him when the cancer dx happened, but his behaviour at that time was truly shocking and barbaric too. I think women valuing themselves, is something to be taught to young girls whilst still at school. Boundaries that men know they have to respect or else are crucial. I don't think I am a feminist, but I sure do sound like one! or maybe I am just a bitter old trout. lol!
Janet, your eloquence and sensitivity are wonderful, and come through in all you write. You are just one of those rare people that seems truly to understand. Thank you!
Off to a meeting now, but just had to write this, Love to everyone here.
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Bosom-forgive me if My comments stepped on your toes. .... Indeed what is most important to me is women valuing themselves. It seems all other problems and /or solutions devolve or evolve from there.
At the end of the day we all do the best we can at the time, given who we are, where we've been and what we now know. A lot could be improved, and I think it is improving, to teach both boys and girls about respect. Self and otherwise.
Hugs to all.
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I have been with my husband for almost 25 years, married for 13 this year. We met in college, it was both of us not wanting to get married until we did...not him only as most people think. He does his best with BC, but it does put them in a spin too. I have had several health issues before, but nothing he worried would kill me.He was really good at holding my hand, being a nurse (in most ways), coming to every chemo, protecting me from pushy family and friends, helping me problem solve and make decisions. For that I am ever grateful.
Not so good at dealing with the BMX & drains...to be fair we were already almost 8 months in by the time I had the BMX. He was exhausted too. He doesn't like to look at my chest because of the scars. When he sees them, he says he feels so sad because of how much it must still hurt me. He doesn't want to be in the doc's office when I have my fills. Doesn't know how to help me heal my soul & gets impatient.
I am not sure how we hit the cancer jackpot, but he had testicular cancer back in 1994, as a 23 year old. He was diagnosed a month after we graduated college. It hardly seems fair that we have both had to do this. I am glad though that he could understand the fear, anxiety and depression better than I think most men would be able too. FYI - he is still doing great. Was considered cured after 5 years.
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I cant remember which thread I mentioned that I was finally going to see a cosmetic surgeon. I did on Monday . I really liked him. Kind, empathetic, very qualified. I was human to him.
He had all the records before my visit. Images, rads report, surgical report, pathology ets. He reviewed everything before my visit. He said he cant / wont attempt to correct what he feels is minor and he encourages me to accept what I have.
#1 I am not healed from rads yet. He said the muscles are contracted, the skin is thin and retracted over the tumor site, the interior tissue is hard, the nipple may have compromised circulation (or just pigment change). He says the breast will continue to change for about 2 years so what is here now is not the final product.
#2 Radiated breast tissue does not heal like normal breast tissue. There is a high risk that I would never heal even from a simple fat grafting.
#3 He said I have a *19.3 % chance of recurrence with 15% in the original cancer breast. I have received the maximum radiation for a lifetime on that breast. In the event of a recurrence, mastectomy is the only solution. He wouldnt want to do something today for a minor disfigurement that would prevent reconstruction in the future for a major need.
So, I will stay as is. Its ok. Its not bad but its far from the perfect of before. You ladies have already told me is ok to say my boobs were perfect and to grieve that without guilt. I ALWAYS have a pang of intense guilt whenever I feel negative about the surgery because of think of my sisters in bc that lost so much more. I thank all of you for your understanding.
When I got home and told DH that things stay as is, he said his going to have to get a closer/feel for himself just in case the Doc missed something. Gotta love the man.
*No physician would ever discussed recurrence rate. Not the MO, MR, Pathologist or internist. None of them. They speak only of survival rates. I asked the cosmetic surgeon where he got those percentages. He said he imputed my facts in a recurrence calculator available to physicians only. The MO had told me before that there are too many variables to estimate a recurrence rate. I bet if I mention the calculator that he will say he is not confident with the percentages. That's his favorite word "confident".
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Raider, I'm sorry you won't be having a procedure to get back some of what you lost. I know it's already been said, but you should feel no guilt for grieving that loss, but I'm saying it again. It sucks that any of us have to go through this at all. It's ok to feel negative about the surgery. Lord knows, I feel angry about my treatment even though it may have saved my life. We're allowed to hate the loss. Somehow we have to find a way to live with it and move on. I'm not there yet myself. It sounds like you're closer.
Interesting about the survival/recurrence rates. The only doc who talked to me about that was my MO and only after I asked. I think he said there's about a 70% survival/30% recurrence. Another time, he said I should "consider myself cured." I thought that was BS since there's a 30% recurrence rate. We can hope I'm cured, but I'm not assuming that. It would be crazy to go happily on my way assuming I've seen the end of this then really feel slammed if it does come back. I'd rather live with the reality of a possible occurrence but hope I'm in the 70%.
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Raider- although the news you heard must have been hard, first, I love your husband for what he did. Bravo! A real man!
Having a professional and adult consult with this doctor will help you heal and move forward, I think. You will always grieve. I'm right there with you. But a big gift yesterday to find an honest, reputable, competent doctor who treated you like you should have been treated before. A long time before. Thanks for sharing the story. I found it interesting and uplifting. Also sad. I guess that's what real life is. A big mix of everything.
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Raider Girl - thanks for sharing. Your story sounds a lot like mine in that defect might be undetectable with a good fitting bra but the thing is "we", "I" can see it in the bathroom mirror every day. I know I'm a month out of rads...so more healing to go. Currently the bad boob sits about 2inches higher than the other one. I really hope I find a PS as good as yours was. The one I met before I committed to rads was an ass. I'm still not sure if it was a because he doesn't get paid as much through our healthcare for this (gov paid) vs his usual paying customer.
Your DH sounds like a keeper. Mine is getting tired. He has been good but he is more the type to fix it and move on. He accepts my body and doesn't understand what the big deal is seeing that I look pretty much the same (and I am grateful for that)
I'm back to work on Monday. My stomach is in knots. 6 months is a long time to be away. I learned something new from my DR about the way I have dealt with things. It's called "social withdrawal"...it is my coping method and it sucks now to jump back in. I find the noise from my DD's, DH and my 2 small dogs enough. Quiet is soothing. I seen something posted the other day that said a busy life is not always a meaningful life. Oh how true that statement is..for me anyway. Wish me luck! (And thank you all for your posts
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Good luck Monday JJ
Your social withdrawal was a necessary part of your healing. We humans are adaptable. I think it will be difficult, but I know you can make the transition successfully "back in".
Loved the quote.
A big hug and all the mojo you need coming your way for Monday. Keep us posted, ok
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JJOntario -
Going back to work is I just another crummy transition we have to go through, and it's extra hard when you're being torn from your safe quiet place.
But sometimes the idea of something is worse than the actual something. I call it nerves, but my temporary psychiatrist called is 'anticipatory anxiety'. Whatever. To me it just sounds like a fancy term for 'stomach in knots'. Before I went back to work (after 6 months) I was a wreck. When I did go back I felt like I was wearing someone else's close and sitting at someone's desk using someone else's pencil. It was okay though, and not as bad as I thought. I couldn't concentrate or carry on a linear conversation but nobody seemed to notice.
I remember in my first week back someone said to me 'You look radiant'. I almost started crying 'cus I thought they said 'You look radiated'. Ironically, I guess the reason they said I looked radiant was because I had been radiated, and because I'd had six months of cramming myself full of kale and coconut water. People also said how lucky I was to have had so much time off. Everytime they said 'I must be nice' I forced myself to smile, but the words 'f*ck off' were always on the tip of my tongue
So good luck on Monday - I will definitely be thinking of you. Try to remember that everything is temporary and it will get easier as time goes on. Enjoy your weekend
Janet
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JJ, going back to work is a challenge. I wasn't off as long as you so maybe that made it easier. I had 3 weeks off for the BMX then worked intermittently during chemo and full time during rads. But I'm a lot like you in needing lots of quiet downtime. I've always been that way. I'm also not in love with my job so that didn't help. I got tired of everyone asking me how I was doing and telling me how good I looked. I know they meant it as a kindness, but I wanted to scream that I might look good, but I felt like s**t. Hang in there. It's probably not going to be as bad as you anticipate as others have already said. Are you starting with part-time or going straight to full-time?
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Went out with friends who said I looked great. LOL. I don't usually wear make up and had used the stuff from Look Good Feel Better. For me it was Feel Lousy Look Great
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Chloesmom- Lol. I so get that. Sad but you are too funny at the same time.
A new acronym is born
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Chloesmom, LOL LOL
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2Tabbies,
I believe the MO wont wont speak of recurrence because he is a peace loving hippie. Wears a pony tail, sometimes he closes his eyes when he speaks and he speaks very softly. Recurrence rates to him are a useless statistic that does not help a person live well. The goal is always to live well. Maybe he has a point.
JJ Ontario
It's not detectable at all even with a regular bra. The scar is sternum nipple and slightly indented. The breast is lightly higher and pulled sideways a bit. The part that bothers me is that when I lift my arm the tumor bed looks like the surgeon used an ice cream scooper.
Since I don't intend to become a topless Nazis, I suppose my clothes can stay on and my arm down.
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