Feeling guilty
I'll try to make this short. I was diagnosed with DCIS in April, lumpectomy in May, infected incision in June, radiation July to August and now on exesmestane. In that time my husband started having heart issues (afib) in April, hospitalized for 8 days just before my surgery, fine until my 15th (of 30) radiation treatment, back in the hospital for another 9 days and finally had a pacemaker put in. Fortunately he is feeling better now.
So, I'm feeling as if I missed the care I "should" have gotten. I know that in reality his medical problem was more serious simply because his heart just was causing a myriad of other issues and I was getting great care, but I still feel like I missed something, maybe a transition into this new normal?
And sometimes I feel guilty for feeling this way when really physically this has been easy. I had very little affect from radiation, and so far feel fine on exesmestane. The worst part was an allergic reaction to the adhesive from the drapes during surgery.
Anyone else feel like this? Or guilty when "All it is is DCIS?"
Comments
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Hi There - Are you saying you missed 9 radiation days because of your husband's illness? Not sure what you feel you missed. Could you be more precise? If you did miss 9 (or less, because of weekends) days of rads, was that not discussed with the radiation oncologist? If so, do they think your treatment suffered? Secondly, of course you had to be there for your husband. No regrets; you just need to have medical answers about whether your treatment plan was adversely affected, or not. If so, it's done. I suspect it's just fine. As to thinking you "just" had DCIS, not so. We all get our breast cancers at the level we get them at. I was happily surprised, with just low-grade DCIS and a tiny, non-aggressive microinvasion, how the women I was in rads with (we would meet each day as our appointment times were near together), women with the chemo no hair and the other, more aggressive cancers, brought me into the fold just the same. Cancer is cancer; luckily for us we have probably a good outcome, but no woman ever made me feel my feel my experience were less important than theirs. Yes; we are lucky it was early. No; we are not lucky it happened at all. Anyway, please respond. Would like to know more. Best- P. xx
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Just re-reading your Post. I see, now, that there is some feeling about having to see to your husband's heart problems right at the time you needed to be the focus, and without interruption. Please don't feel guilty about that. I really needed to be the focus in my family when I was going through this, and, believe me, I did not make a big fuss. Still; it's a big surprise, and scary, and you are perfectly entitled to feel as though the focus on you was left out because of your husband's issue. I understand. I'm glad you have found this forum. It has been a great help to me, and I have started threads just about these things; clueless children, fear of the future, etc., etc. Please use this.
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Percy, I was able to complete all my treatments on schedule, mostly because one of our daughters lives close to the hospital where I was an hour away. She took care of visiting so I could stay on schedule (I also work full time and had to use my vacation time for surgery).
I'm just feeling sorry for myself. This is the first, and hopefully only, time I have needed support and feel like I missed it. Now that I have been "released" to see my MO every 6 months it's hard to explain to him that I have a new normal and am reminded every time I take my AI.
Thanks for your response, I've just started to realize how deeply this has shaken me.
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ORknitter: Sorry to see you join us, however, if it is support that you need, you have come to the right place. And hello to Percy! I "breezed" through my surgery, treatment and recovery and refused to acknowledge that I needed support from anyone. I received tons of information from these boards. Then I moved into my second stage which was learn everything there was, eat healthy, lose weight, exercise, cut out wine, etc. etc. I think I believed that if I did everything perfectly, I would ensure that this beast never returned. But I lost myself in all of this. I never allowed myself to grieve or take sufficient time off work or even let my friends worry about me. I was always assuring everyone how well I was doing. And a year later I crashed. I have just recovered from a depression that knocked me off my feet. It has been termed a delayed reaction. So you are absolutely on the right track to realize that you do need to focus on your loss despite your partner's issues and not to minimize your health and emotional needs. DCIS is tricky in that we almost feel guilty being scared and having the strong fears that we experience. Please find a therapist, support group, this forum, etc. to provide you with a means to express your feelings of loss, fear, etc. You do not want a delayed reaction. Our bodies force us to deal with our emotions and often in the most inopportune times. So good for you to recognize what you need and what you did not get. Now go for it!
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TB90, Thank you for sharing your experience. I know this is getting to me right now. To complete the story, my sister passed away from this at 47. She was diagnosed at 43 and had absolutely everything possible, doluble mastectomy, chemo, bone marrow transplant, to save her but nothing did. This was in the late 1980s to 90s and she felt "another lump" and didn't do anything about it for months. I know in my head that this is not her cancer, again it's "only DCIS' but the fear is there and very real. I am also post-menopausal at 62 so really not similar, but still ..... I would love to just go sit somewhere and have a good cry, not possible right now dealing with a tired husband. I do have access to a support group but feel guilty since every other person there has been dealing with chemo and cancer that has much more serious effects on them. This is where I naturally just "suck it up" and get on with life.
I hope this hasn't been too rambly, I just finished work & my brain is tired.
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I understand a bit how you feel ... I was like TB90 and pretty much “breezed through treatment” without asking for or needing support from anyone. Deep down I would have really like to have some though but for some reason I couldn’t bring myself to show any “weakness” so I presented a front that everything was fine and did it so well that most people, including my husband just went on with their day like it was no big deal. The only people who were really there for me in a way that I needed were people I knew who had already been through it and who ignored how I was acting or what I said, LOL. It’s not that my husband didn’t want to be supportive - it’s more that he didn’t know how and I didn’t know how to ask for it, either. For over a year later, I was very resentful and occasionally still am that I didn’t get to be treated “special” ... sort of like you said - this was the first and hopefully only time I would be going through something like this and I wanted more sympathy and support than I felt like I was getting. I do recognize that a large part of it was my inability to show anyone anything other than a perfectly calm front so that they had no reason to think I was falling apart inside, but while I get that rationally, irrationally I still feel cheated.
How he handled it (for example he never once came to any of my medical appointments - he mostly just buried himself in his work) caused some big problems in our marriage, which, almost 3 years later is just getting back on track - it took me over a year before I finally told him how I felt and we were able to talk about it.
Wow - I’ve never admitted any of this “out loud” before ... not sure if it helps or brings back memories best left buried, LOL.
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In a similar vein, about getting the attention you need. I am supposed to schedule my 2-year-out mammo now. Actually, it's a few weeks late because I just don't want to do it. I'm fine, but have experienced the horrible feeling (when I got the routine mammo which originally showed my cancer) of thinking I'm just fine, only to find, with one bad picture, that I'm not. I've read that most recurrences happen not at the, say, one-year-out point but from the 2-10 year-out point, so having my two-year-out mammo is scaring the hell out of me. I would like some empathy around this feeling, but everyone I know just thinks it was gotten, it's gone, what's the big deal, why do I turn into a little puddle of mud when screening draws near? The rest of the time, I basically forget about it. So. I know I need to schedule the mammo (ladies; give me a push!) but I resent that mammos only show 40% of cancers, and ultrasound shows a further 40% (of a different type) which would bring spotting a new one to 80%, but my HMO won't do screening ultrasounds, and I can't afford to get an outside one. I do not feel guilty about wanting understanding that screening scares me, nor do I feel guilty that I would like better screening. I guess I'm saying I'm having a hard time right now, because I have to schedule this mammo. The support we need may be required, at times, forever.
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percy4, the best words my breast surgeon said to me about tests, right before a PET scan, were "you not knowing doesn't mean it isn't there. Getting tested just allows me to better plan treatment." So I guess my words of wisdom are, I sincerely hope nothing shows up, but not testing won't make it go away if there is something. So get your butt in for that mammogram. The stress of not doing it isn't good for you.
Big hugs, I knows the testing is tough. I have my follow up mammogram after surgery and chemo to see if anything grew, or they find anything else on October 2nd. Do I want to do it? Heck no. Am I going to? Yes, scared and everything. I guess every test from here forward will be a stress period
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ORknitter, I can understand feeling that way. Your diagnosis might not have been as life threatening as your husband's, but it's still scary and HUGE and life-changing and painful and exhausting! It's a tremendous shock to have a cancer diagnosis, and then you also had to support your husband and deal with the shock of his heart problems. Anyone would be left reeling. Please don't feel guilty for feeling overlooked during that process. The timing stunk. It would have been helpful to have had more support and to not have had to support your husband when you needed it yourself. You still need it! If your husband can't provide it because he is also transitioning into his new normal, maybe there is a friend or professional (or maybe just us!) you can talk with just to work through your feelings. Your feelings are valid, so please don't feel guilty about being honest with yourself. We all come through this feeling differently, and finding that new normal is a process. {{hugs}}
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Percy4, I remember when you "burst" onto the forum. It's been two years? Wow. I am not going to tell you what you SHOULD do, I am going to support you for what you WANT to do, but am too anxious to do. Do some slow, deep breathing, picture yourself hearing good results, and reach for the phone and place the call.😏
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ORknitter, I am supporting your feelings of unfairness. You need to be pampered and cuddled, and be told you don't deserve to have this ugly disease altering your life's trajectory. <<<hugs>>>.
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LAstar, thank for your great comments. We are both trying to adjust to a new normal and it has been challenging. One of our daughters and her boyfriend came for the weekend. She's a wonderful sounding board for me, but I don't like putting too much on her. This forum seems to be a place where I can express how I feel without feeling like "there she goes talking about her cancer again!" Everyone, friends and family, have been understanding, but again this is just not what I always want to focus on with them. (My little group of close friends have another that has BC and she has become very needy and seems to take advantage of others generosity often, so that has left a rather sour feeling for all of us.)
Mefromcc, thanks for the hug, that was exactly what I needed this morning. It's soothing to have this feeling validated.
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ORknitter, when I read your post, it really resonated with me. Some of my friends and relatives insist on reminding me that I didn't really have cancer in their opinion, as DCIS isn't invasive. While I certainly understand that those with invasive cancer face fears that I didn't, sometimes I find myself wishing for a little more understanding about the pain and disruption arising from surgery and radiation. I also "picked" a bad time to get sick -- my surgery came one month after an uncle died from leukemia, 10 days after another uncle died from lung cancer, and 2 days after a cousin on the other side of the family was diagnosed with another form of leukemia. It's been a particularly tough time for my aunt, who lost her older brother and her husband in such a short time. I think it's also causing "compassion fatigue" in the family,
Even though this is "just DCIS" and others close to you also are dealing with serious medical issues, you need and deserve care and compassion, too. You couldn't be sure of the diagnosis until the final pathology report after surgery, and the road from the first sign of trouble to that final report can be a long one, filled with a lot of anxiety. Surgery, rads, and hormonal therapy all bring risks and potential side effects, and the DCIS diagnosis means you'll have to monitor for the risk of recurrence. So yes, the experience would shake most people, even if you didn't have any complications.
You'll find a lot of support here if those around you are not capable of providing it right now. Big HUGs to you!
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Chicago, thank you so much. It's nice to know my feelings are valid. I am so sorry for your aunt, that's a lot to grieve in such a short time. I hope she can find support somewhere, either in person or in a group like this
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Thanks, ORknitter. We are rallying around my aunt, and she has support from some wonderful friends. The funeral was too soon after my surgery for me to fly (especially as I had infection and other issues), but others were there for her, I've been supportive over the phone and through mail (she's not much for email), and I will be visiting her before the end of the year. I'm also using air miles to bring her to Chicago to see my mom and me when she's feeling up to it.
If you have friends or other sources of support who aren't connected to your husband (like this board), those might be especially good options for you right now as their attention won't be divided. I'm expecting a visit at the end of October from an English friend and it will be a real treat not only because she's delightful, but also because she is coming just to see me!
And don't forget to be kind to yourself. Take it easy on yourself and don't beat yourself up for how you're feeling.
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Thanks, ORknitter. We are rallying around my aunt, and she has support from some wonderful friends. The funeral was too soon after my surgery for me to fly (especially as I had infection and other issues), but others were there for her, I've been supportive over the phone and through mail (she's not much for email), and I will be visiting her before the end of the year. I'm also using air miles to bring her to Chicago to see my mom and me when she's feeling up to it.
If you have friends or other sources of support who aren't connected to your husband (like this board), those might be especially good options for you right now as their attention won't be divided. I'm expecting a visit at the end of October from an English friend and it will be a real treat not only because she's delightful, but also because she is coming just to see me!
And don't forget to be kind to yourself. Take it easy on yourself and don't beat yourself up for how you're feeling.
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So as if this summer didn't bring enough doctor appointments, my "female" exam came back with recommendations to have further testing, something about HPV being positive? Of course I immediately googled all I could so the panic is gone, but geez, more docs, more tests, more waiting.
Thanks for listening.
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Oh, goodness. Me, too. Now, they see a thickening in the uterus (completely separate) they want to biopsy. Should be OK, but really don't feel like I can take anymore.
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Yeah, I'm just not looking forward to this. I just got released from my RO, and my MO says I'm doing great on exesmestane so she doesn't need to see me for 6 months. I see the surgeon Monday and I'm pretty sure she won't need to me me again anytime soon. And DH also got the "see ya in 6 months" direction from both the cardiologist and the kidney doc! We were looking forward to the break for the holidays. Oh well...
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ORknitter,
Figure you need a booster of empathy for what you have gone through and face. <<<hugs>>>.
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Me, thanks! I was thinking this had dropped from any activity.
Had great news yesterday, no colposcopy needed. Gynecologist said to come back in a year & if there is still something then we will do it. Such a relief.
Also saw the BS who said she will see me in April for my next mammogram. So I am released from everybody (at least for a few months unless I get hit with side effects).
Now I will focus on my poor husband who is still exhausted from his heart surgery (ablation & pacemaker implant). He's usually so energetic, now he naps in waiting rooms.
How are you doing
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So pleased you have a little respite. Me; in addition to the uterus thing, the alone thing, the debt thing, the not enough income thing, the hateful women at my workplace thing, the best friend and cat dying thing, the invalid mother thing, the unhappy children thing, I have to schedule my 2-year-out mammo, and I will, but just don't want to. I can't take one more thing. At all.
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Orknitter, happy to hear that there is one less thing to worry about for you. Yeah! Also happy to hear that DH is in the recovery stage. Perhaps you two could agree to pamper each other as you heal.
Percy4, yes, life is one negative event after another which often overwhelms us. I see that you also need <<<hugs>>>.
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Percy, Sounds like you have a lot going on. Please take time to pamper yourself!! I think we need to give ourselves permission sometimes to be gentle with ourselves especially when so much is going on. Deep breaths!
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