Why was I stronger DURING treatment than I am now?
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I've never attended a support group and didn't find out about one until I was finished with chemo/Herceptin and double mastectomy surgery. I didn't think I needed one. Because two of my sisters were dealing with breast cancer at the same time we supported each other. The only thing was they were in the same state as well as all our family, and here with me was just me and my husband. One of my sisters passed away March of this year after the cancer had spread to other areas of her body and she could no longer walk or talk. When I would talk to coworkers or friends while out of work doing my treatment they would say you sound good and would say you are so strong... I didn't understand what they meant. Maybe on the outside I didn't look sick but after dealing with my sister passing I don't know if I am strong. I've ran into some, who if you have a moment of weakness will throw at you "where is your faith?" Thinking about my sister and a friend's three sisters makes me think of my situation even though I'm ok. I have lymphedema and fat necrosis all over both breast but for the most part I'm ok. I think now would be a good time for me to join a support group.
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Timbuktu, please tell your DIL that Purl51 (Debra) said to go jump in a lake. Thank you and happy holidays!
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Thanks for understanding ... it really helps.
The struggle, I think, is to stay in the moment and enjoy every moment. The past is gone. No one knows the future.
All we have is right now. It's the way I got through all of the treatments and I'm trying to continue to think that way, although it
really is a challenge!
Dila, it must have so hard to see what happened to your sister, Do you have the BRCA gene? Of course I have no brothers or sisters so who knows what might have happened to them? The only one in my family to get BC was my mother and she caught it before it went to the nodes and had 15 years before it came back. She didn't have chemo or hormone therapy.
Anyway, hoping the new year brings health and peace to all of you.
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I love this idea!! I feel like I spend so much time telling everyone I am great, just to convince myself. One minute I really am great, and in a second weeping uncontrollably.
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Are you on Arrimidex Deb? That's known to make you cry uncontrollably.
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timbultu. so sorry that you received such cold and non-caring treatment from your DIL. For those of us that are older, we must try to remember that many young, healthy adults have little to no empathy and little understanding. Perhaps your family was not around while you were in the throes of your treatments. Tthat is why we are so grateful for this web-site and all our sisters here.
Robin. I am amazed that you were able to host that many people for Christmas. That is admirable. I am very pleased to learn that the words of Eckart Tolle are helping you. Refer to them often. They are a gold mine for any of us who suffer from our stinking thinking.
It is good to have gotten through Christmas and I am looking forward to a good new year and wishing everyone the same.
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Honeybair,
heh heh I love that 'stinking thinking' expression, I think I might borrow that! I too am glad that Christmas is in the rear view. I cannot believe that 2014 is just on the horizon. Additionally, I cannot believe that it has been nearly two years since I went to the breast clinic.....
I still feel 'stunned' about the dx, I cannot understand why it should that be so after all this time. I really can't seem to feel ok, just 'ok' and not ill at ease constantly. Bc seems to frame an alien world that I still cannot understand and live in. Does any one else feel this way too? How do I come to terms and pick myself up as some on here are beginning to? I just seem to be going through the motions with all feelings blunted. Perhaps it's to do with other life events as well as bc. Today, I have been in bed mostly the whole day with Horace (my cat). I think it's the only place I feel safe.
Hey Timbuktu, I too am a little shocked at your DIL in her lack of understanding and a psychiatrist too! I also understand that sinking feeling when you wish you hadn't said anything.....when the 'advice' is so dismissive and unhelpful, it merely serves to increase the sense of isolation...
I am so grateful I can say what I want here and no-one diminishes my experiences....
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So good to hear that you can relax and be open winter.
My son and his family live 2 miles from me. When I got sick they got a dog knowing that I'm horribly allergic to dogs.
They didn't speak to me for 2 years. What happened yesterday was nothing compared to what they've done in the past. . the reason they were here was because the last time I visited them, two weeks ago, my son decided to clean out the rabbit cage and I went into a horrible asthma attack. I'm not going there again. What they say about psychiatrists...it's true. I suppose they will learn in time, but it will be too late for me,or their children,
I think when you have love and support you can face a lot. when you have the opposite, for whatever reason, everything is much harder.
I have to go in for a d & c soon. I was afraid to tell them. They might dump me again. they don't like sick people!
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wintersocks, I feel much the way you do, blunted, Ill at ease, often anxious. As time has gone on I take 2steps forward, 1 step back.. Gradually I think I will arrive where I started from!
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Timbuktu, I meant to say how sorry I am for the way your son and his wife have treated you. In time I think they will come to see their mistake-the young are so selfish.
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Hello everyone, I am amazed at how many of you , like me, had big disapointments with their family members following the Dx. I was Dx in January 2012, had bilat mastectomy, chemo, reconstruction. At the same time, my step daughter (married for 23 yers with her fther) had a little girl , who was my sunshine. Last May, she decided to cut all contacts, saying I was using my sickness to get attention from her.... Only that during these two years, she never called to get news, all was done by email. Honestly, this situation i find more difficult than the treatments or surgeries.
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Magic, I get it, big time! Is it selfishness? It's hard to figure out what drives these people. And yes, it's more painful than the treatments.
No one who is sick should be treated as worthless. I sent my son Martina McBride's video "I'm gonna love you through it".
I wanted him to see how it's supposed to be. He ignored it, just as he ignored everything else. Now he acts as though nothing has happened. He told his father he wants no more emails. I asked if it was true and he said "yes, I don't want any negativity in my life".
So, it's all "How about those Cubs?" That's the extent of it.
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Timbuktu, I still hope this might change , but as days pass, I am trying not to think about it as often, I try not to let her get into my head! Christmas was the hardest part, but at least now it is in the past. Is it selfishness? Probably. It is certainly a lot easier for her no to have to deal with this kind of situation....
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Dlia, it must have been tough for all of you to be going through this at the same time...and even tougher to lose your sister. I don't even know what to say about the "where is your faith?" comments. That would just make me roll my eyes.
Some thoughts for all on various friends and family members who are so unsympathetic: I suffered for decades with severe migraines (which have been all but cured by menopause and letrozole!), and dealt with a wide range of idiotic comments from ignorant people who thought they knew why I got them and how to cure them. I came to the realization that people like to believe that if what is happening to YOU happened to THEM, they would of course be in complete control and not affected in the least. That is a lot less scary than thinking that they, too, could suddenly be debilitated as much as you are.
There's even a term for this, fundamental attribution error (http://en.wikipedia.org/wiki/Fundamental_attribution_error). Your DIL ought to know the term, Timbuktu, even if she doesn't recognize it in herself!
Another issue is what is called "invisible" illness. There is even an awareness drive: http://invisibleillnessweek.com/ . For instance, I have a friend with a congenital bone condition that keeps her confined to a wheelchair. I can't imagine (although I've never discussed it with her, so I don't know for sure) that anyone would tell her she was using a wheelchair just to get sympathy, or that her condition would be cured if she would just exercise/meditate/become a vegan/whatever. But when you *look* OK, people assume you must *be* OK. They believe their eyes, not your words.
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I am not on arrimidex and I have cried uncontrollably over the past 18 months more than I ever have before, with maybe the exception being the year after my Mom died of cancer at 65. I went into a terrible depression after that for about a year.
Whether it is drugs, chemo, cancer, fear or pain I am trying to accept that this is where I am most days. Not necessarily crying all day. That has improved for the most part, now I have moments of crying most days and some not at all. But, more than the tears it is just accepting and allowing myself however hard it is to feel my feelings and not necessarily judge them, just obverse that they are there and acknowledge them.
It is funny, I was in therapy for many years and my therapist used to try hard to get me to treat myself the way I would treat my child if they were frightened, fearful or sad. If I had those feelings I would lecture myself and put on a "strong, I can do it face" for the world and be ashamed of my feelings. I would never treat my children this way. I always try to help them know that feelings are okay - they are not good or bad, just what they are and it is okay to acknowledge them. Even anger. We don't have to take actions against or in support of these feelings but it is okay to allow ourselves to feel it.
I am getting that - whether I want to or not this past 18 months.
You all help me get it.
Thank you.
Julieho
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after my failed surgery i am feeling totally flat, disconnected from everything, and like a freak again......still got a drain and bandages and feel horrid, hopeless see no point in living like this - selfish i know but its honest
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So well said cf! Thanks for putting it into words. I think you are exactly right,
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Julie, Lily, so sorry you are going through this right now, I hope the New Year brings relief. Time usually does...
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I soo need to rant....
finished rads in august... had a blood clot and major infection...probably due to port..in september... was on anti b's till october and blood thinning shots till november... got a sinus infection at the end of november...so far two rounds of antib's and im still sick and in pain..
sigh...
is this really the new normal? i miss... me.
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Celine, I feel your pain. I just thought I'd add my two cents. My psychiatrist (who is very up to date research wise) has told me that being on antibiotics can cause a temporary rise in depressive symptoms, so that may be contributing to your negative feelings. It's another stressor in and of itself! Hope that info helps and you will get the "real me" back soon.
Hugs,
Peggy
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Oh boy - seems as though this time of year is pretty crappy for those who are still finding their way.
Celine - 'I miss me'. That pretty much sums up what a lot of us felt, or are still feeling. But being sick and in pain isn't part of the new normal. However, it may be part of the process of getting to the new normal. From my experience there was a lot of undoing during that first post-treatment year before I started being able to rebuild. Even then it was slow delicate process, over which I didn't have too much control. I kept trying to do everything right. Rest, work out, eat right, 'feel grateful' (an overrated exercise), and try to get back into the swing of things. But it wasn't easy. My emotions and reactions had a mind of their own and there was a lot of disappointment, and a lot of tears. Lots of meltdowns too - which was weird since I was such a warrior during my treatment. But I was soooo uncomfortable in my skin and in my life. But the last six months has been pretty great for me. I've been recovering from DIEP and Iook like a science experience, but I feel solid in my core. It is a long process and I thought I would never feel sane again. But the new pshysical/emotional bits all fell back into place, and the old unnecessary bits and pieces somehow got flushed away in all my meltdowns. I still break down from time to time but I know it's temporary, and I no longer feel fear or despair.
Timbuktu - You're son needs a spanking
Winter - I totally get the 'going through the motions' thing. And I find when you're simply going through the motions there are no rewards, and no joy. (We've been pm-ing so I know we have half our conversations in private and the other half here). But do you have anything lined up to look forward to ? Maybe it's taking you longer to find something to grab onto because you've got to deal with the f*cker ex-husband and a relationship that you chose not continue. Plus your move, and the kids. It's an awful lot to go through. I'm going to quote Dr Phil here - it's easier to get motivated when you 'excited about your future'. And it's hard for us to get excited about the future with fatigue, and a new self-image, and getting used to all the new stuff and missing all the old stuff. My pets have been indispensable to me because there's not 'fitting in' and they don't judge me when I wear the same dirty sweat shirt six days running. I know that Horace is there for you too. (And I LOVE the photo of Julie's dogs on the bed). Sometimes bed is just the best place to be. And sometimes it's best to force yourself to get up, have a shower, and get moving. But how do you know when? Finding the balance is really tricky. I used to be satisfied if I could accomplish just one thing on my list. And even sometimes that was too much. I wish I had advise to give you but I don't. I just really hope from the bottom of my heart that things start to get easier, for everyone.
Janet
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Celine,
I was on antibiotics on and off for a total of around 7 months last year. I had to have my first tissue expander removed prior to chemo due to a severe post-op infection in the left expander. Then after chemo had the tissue expander put back in and after two months got another infection - which they treated for three months with the wrong antibiotic. Finally the cultured the fluid around the tissue expander and put me on IV antibiotics that I had to administer at home through my port for another two months. Antibiotics suck and so do infections.
They really mess with our "normal" (whatever the hell that is) recovery from all this.
I can't say that I am back to myself again, not sure I ever will really be that person again but I have slowly begun to heal physically and emotionally. This group really helps the emotional healing.
Sending you love and light and hoping your infections cease.
Julieho
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I recently read that about antibiotics too. I'm glad to hear it again because it gives me hope that this too shall pass. I was on cipro for 2 weeks until a UTI cleared up and then, as soon as it did, I got an infection in my finger that started to spread, ie, gave me a fever So I was on clintomycin for another 2 weeks. Of course sickness itself is depressing but all of these sE"s on top of it is tough to handle. Hopefully we stay off of antibiotics for a little bit and return to "normal".
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interesting re antibiotics..........
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@Timbuktu, I believe I'm just starting to allow myself to grieve. I had the brca test and the results were negative. Breast cancer is on both sides of my family. Me and my two sisters, my mom's sister and her daughter. Three of my dads sisters two nieces and two great nieces.
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Has anyone gone to a support group or is this it? I don't know what to expect in going but the next one is Jan 13th.
I think I like this forum but I guess I need to give it a try. When I called the lady said I can also find a counselor to talk to. When she said it, it came out kind of odd...
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Hello All
Janet - you are so right - these holidays are crappy for those of us still finding our way. Don't get me wrong - I loved Christmas with my kids - Christmas is SO for little kids. However, I honestly could have done without most of the other relatives save for a handful. The rest of them, I find I am just sick of all their continuing crap. Their mooching off of others, their self-centredness, their cluelessness about how their behaviour impacts those around them. I just don't want that energy around me. My husband is big into FAMILY - he feels like he has an obligation to his late mother and still living father to keep the family holidays rolling along. I do it for him but this year I let him KNOW I do it for him. It's not for me.
We are just back from Ohio and seeing my elderly parents. They are 77 and 79. My dad is quite frail and my mom takes care of him AND my 5 year-old niece who is forever being dropped off at their place when my brother and his wife don't want to be parents. I really worry about my mom and dad. Not only do I live 4 hours away but I live in a completely different country and I have three young kids. There is only so much I can do for them. Visiting them is not easy either. We have to stay in a hotel (two rooms because legally 5 people can't get one hotel room and the few times we did get us all into one room it's amazing anyone survived), drive to their place back and forth, and all the while trying to keep my kids calm and entertained. It's not easy when your elderly dad just wants to watch FoxNews and sports! 6 year-old girls just don't get Bill O'Reiley! And 79 year-old men don't get Sponge Bob. LOL
I am an Oreo - I'm the stuffing in between my kids and my parents both who need me and I managed to get cancer to boot. That is what I am left with about these holidays. I might not be any good to any of them. I've decided it's time to take the changes I've made in lifestyle even further in the new year. I have to do everything I can to hang around.
Oh but now I am home and in my own bed (I loved the comment about bed being good - it's like my island oasis in the sea of chaos) and watching My Little Pony and apparently later - Barbie! 2014 can't come quickly enough for me!
Hugs to you all - you get me through!
Robin
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Hi! New to this site, I am glad to see so many supportive people here. My mother was diagnosed 14 years ago with bc and had a second different bc six years later. She went through 12 rounds of chemo and mastectomies, and hormonal therapy. Yet, she cannot even understand what I am going through. She just tells me how much worse it was for her and that I wasn't supportive to her. She has been great with financial help and with my kids, but I expected more understanding with the side effects of chemo. When I call her with fears for the future she just dismisses them.
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You know mothers are funny. When my mother had it, she seemed to take it in stride. She never talked about it afterwards. I was telling this to someone once and she said "Maybe she wanted to shield you." That's when I realized that I have never talked to my daughter about it! I can talk about it to anyone at anytime, but not my daughter!.. I just can't handle it.
What goes on between a mother and daughter is so deep and so different from any other relationship. It's the great mystery as far as I'm concerned. I cannot imagine being able to handle this if (God Forbid) my daughter went through it. I just couldn't. As a mom of 3 grown children...I'm not good with their pain and I always seem to say the wrong thing. I think you need to turn to others for support.
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