Feeling low :(
I have always tried to stay strong throughout my journey. I have put on a brave face and barley shed any tears. I know that I am one of the lucky ones and feel so guilty when I complain to friends about what i have been through. Having only been diagnosed with low-grade DCIS, with no need for chemo or radio therapy. Instead my BC was cured with a double mastectomy / reconstruction. After reading many of the stories on here, i don't feel i have the right to complain. So much so, that it took me months to even begin to become part of this wonderful group. I didn't feel that I would belong here - i don't feel that I am a 'true' BC fighter.
I feel uncomfortable telling people that I have had a mastectomy because i 'had BC'. They always respond with "Oh, you poor thing. Im so sorry to hear that." etc ect. I always respond back with " No actually, i'm not a poor thing. I'm a lucky one", and go on to tell them some 'real' stories of BC.
I think i thought that if i talk to everyone one (family and friends) about what is happening, it will make it easier, make it go away. I have tried to make a difference, talked openly about my experience, encouraging people to have regular mammograms, posted photos (hoping that it will help other with their surgery). When really, now that I think about it I'm trying to run away from the problem. I can't believe that it is happening to me. I can't believe that I'm going through this.
I'm so confused right now as I know that I'm so lucky. But all I really want to do is sit, cry and scream out loud. I have told myself (and everyone else) for the last 6 months about how lucky I am, how I have had the chance to make a difference to my life. I have continously looked at the positive and when i feel myself thinking negative I have to remind my self to be positive. I have just had my last saline expansion. I look at myself in the mirror and now realise that my breasts are gone. They will never be as they were. I have lost all feeling in my chest, lost my nipples and the all the sensations that go with them. Instead I have 2 heavy, solid lumps. Lumps that get in the way, that don't move, that are tight, uneven, unbalanced, uncomfortable and that cause me pain. Lumps that will be there for another 4 months before I can have them removed and the 'normal' looking ones put in, then my new nipples added.
Even writing this now, complaining about my reconstruction and how i'm feeling, I feel guilty as I know what I'm going through is nothing compared to so many of the brave, strong women on this site that have a real fight ahead of them. This is the fight that my mother fought for 4 years. The fight that sadly she lost 10 years ago. And do you know, she hardly ever complained. She was so strong, so brave and so beautiful. She went through hell and suffered so much and yet complained so little. How do I have the right to complain about what I'm going through when it is nothing compared to my mum and so many other out there?
At no point have I had a nurse or anyone from a professional field talk to me about losing my breasts. After the surgery there was no one to talk me through the initial removal of the bandages, the first time I looked at myself in the mirror, no one has asked me how I'm feeling or what I was thinking. Is this because I only had low-grade DCIS? It is because I always came across as under control and knowing what i wanted?
I'm sorry for this very jumbled post. I feel guilty for posting this when i know that so many of you are fighting a hard fight. I hope that I don't offend you when really i don't have the right to complain. xx
Comments
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Hi Emma May,
I am sorry to hear that you are having such a difficult time at the moment and guilt is making you so miserable. I am in a similar situation to you, in that I was also diagnosed with DCIS - in early Sept (although it was high grade and very extensive). I have undergone 2 surgeries resulting in a bilateral mastectomy and currently have tissue expanders in preparation for implants sometime in the New Year. I am now 3 weeks post 2nd surgery. Initially on MRI, doctors thought that I had a large invasive cancer and I was heading for mastectomy, chemo and radiotherapy. It was not until I got the post-surgery pathology results that I could breathe a huge sigh of relief as it was only DCIS even though it was a massive 6cm tumour (I have quite small breasts). I felt incredibly lucky, like I had dodged a canonball! In spite of this I still felt terrible.
While it is no doubt helpful for us to maintain a positive focus I think it is also important to acknowledge what a devastating thing it is to receive a diagnosis of breast cancer, regardless of the stage or grade or the type of treatment that is required to try to beat the cancer. While I am a newcomer to the breast cancer experience, I suspect that the psychological impact on an individual is not necessarily determined by the nature of the BC diagnosis and there are many other factors which impact on our emotional response and how we can move forward. A diagnosis of cancer does not occur in isolation from all the other factors in our life and we are all individuals who respond in our own way - this can also vary across time. I know for me, I have days when I am very acceptiing of my situation and feel like I can cope quite well and other days when things really overwhelm me and everything feels quite dark. I also feel guilty at times because others (including my mum and other close friends) have had a much more challenging experience.
You refer to talking about your situation as "complaining" and you don't feel you have a "right to complain". I think it is really important to be able to share your experience with others as it probably helps you come to terms with it and help others understand things from your perspective. To someone who has not experienced breast cancer, what you have been through would seem highly significant - having a bilateral mastectomy and reconstruction is not a picnic physically or emotionally - by anyone's standards. The fact that you do not need other treatment does not diminish what you have already endured. Keep in mind that you also have previous experience of breast cancer with your mother and that no doubt complicates your ability to come to terms with your own BC diagnosis.
A number of people have commented to me that I seem to be coping so well and I just think to myself "if only you knew what was going on inside". I think there is a lot of pressure to present a positive outlook to others and be seen to be coping well. There is an image of people diagnosed with breast cancer as brave and strong, which they are of course. But surely it is also ok just to be what we are and feel, and not feel the need to hide this aspect of the experience? I certainly do not feel brave nor strong most of the time. I did not choose this but am dealing with it the best way I can. Sometimes that is to have a complete breakdown, cry buckets of tears, get angry, feel sorry for myself, eat chocolate, go shopping, sleep in the daytime, talk on the phone for hours, knit, go online and research breast cancer until I can't keep my eyes open.
Is there any way that you could get some professional support to help you deal with these issues? I have found it extremely helpful to have some professional support from a psychologist and to talk to other women who have come through the other side and have been able to move forward with their lives. There are lots of people out there who understand and will be supportive of you. What would you say to someone who was in your situation?
Sorry for the lecture and I hope I don't sound too preachy. It just upsets me to hear you punishing yourself so much. We are often our own harshest critics. I sincerely doubt that others would see you in such a negative light.
Be nice to yourself and take care. Hope you are feeling better soon
Karen
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Hi Emma May,
I am sorry to hear that you are having such a difficult time at the moment and guilt is making you so miserable. I am in a similar situation to you, in that I was also diagnosed with DCIS - in early Sept (although it was high grade and very extensive). I have undergone 2 surgeries resulting in a bilateral mastectomy and currently have tissue expanders in preparation for implants sometime in the New Year. I am now 3 weeks post 2nd surgery. Initially on MRI, doctors thought that I had a large invasive cancer and I was heading for mastectomy, chemo and radiotherapy. It was not until I got the post-surgery pathology results that I could breathe a huge sigh of relief as it was only DCIS even though it was a massive 6cm tumour (I have quite small breasts). I felt incredibly lucky, like I had dodged a canonball! In spite of this I still felt terrible.
While it is no doubt helpful for us to maintain a positive focus I think it is also important to acknowledge what a devastating thing it is to receive a diagnosis of breast cancer, regardless of the stage or grade or the type of treatment that is required to try to beat the cancer. While I am a newcomer to the breast cancer experience, I suspect that the psychological impact on an individual is not necessarily determined by the nature of the BC diagnosis and there are many other factors which impact on our emotional response and how we can move forward. A diagnosis of cancer does not occur in isolation from all the other factors in our life and we are all individuals who respond in our own way - this can also vary across time. I know for me, I have days when I am very acceptiing of my situation and feel like I can cope quite well and other days when things really overwhelm me and everything feels quite dark. I also feel guilty at times because others (including my mum and other close friends) have had a much more challenging experience.
You refer to talking about your situation as "complaining" and you don't feel you have a "right to complain". I think it is really important to be able to share your experience with others as it probably helps you come to terms with it and help others understand things from your perspective. To someone who has not experienced breast cancer, what you have been through would seem highly significant - having a bilateral mastectomy and reconstruction is not a picnic physically or emotionally - by anyone's standards. The fact that you do not need other treatment does not diminish what you have already endured. Keep in mind that you also have previous experience of breast cancer with your mother and that no doubt complicates your ability to come to terms with your own BC diagnosis.
A number of people have commented to me that I seem to be coping so well and I just think to myself "if only you knew what was going on inside". I think there is a lot of pressure to present a positive outlook to others and be seen to be coping well. There is an image of people diagnosed with breast cancer as brave and strong, which they are of course. But surely it is also ok just to be what we are and feel, and not feel the need to hide this aspect of the experience? I certainly do not feel brave nor strong most of the time. I did not choose this but am dealing with it the best way I can. Sometimes that is to have a complete breakdown, cry buckets of tears, get angry, feel sorry for myself, eat chocolate, go shopping, sleep in the daytime, talk on the phone for hours, knit, go online and research breast cancer until I can't keep my eyes open.
Is there any way that you could get some professional support to help you deal with these issues? I have found it extremely helpful to have some professional support from a psychologist and to talk to other women who have come through the other side and have been able to move forward with their lives. There are lots of people out there who understand and will be supportive of you. What would you say to someone who was in your situation?
Sorry for the lecture and I hope I don't sound too preachy. It just upsets me to hear you punishing yourself so much. We are often our own harshest critics. I sincerely doubt that others would see you in such a negative light.
Be nice to yourself and take care. Hope you are feeling better soon
Karen
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You have had major surgery to prevent breast cancer progressing it's nasty way in your body. Your body will never be the same again. You have been through the trauma of losing your Mum to this disease so you know only too well how serious it can be.
Please don't feel bad about feeling grief over how your life has been effected by all this. We all have different treatments, different outcomes but we all share the common bond of having our lives changed forever by a diagnosis of Breast Cancer. Through this site we can share our fears and grief and help each other cope with life after BC.
Take care. Deanne xx0 -
Really loved the way you wrote this Karen and fabulous perspective........so true!
There will always be those better off or worse off than ourselves....we are who we are! We must be kind to ourselves always!
Jenny x
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Wow Emma,
I really identified with your post. I had a high grade tumour, lumpectomy, chemo and radiation. That is not why I identified with your post. I related because I also feel guilty about complaining. I am so lucky to be alive! I am so lucky I still have my boobs! I am so lucky I didn't have a really bad reaction to chemo! Etc etc....
I too have tried to be cheerful and grateful but every now and then, I need to have a bit of a meltdown and cry and morn the loss of my hair, morn the loss of my figure (I put on 20kg) and just be sad for everything I have been through and what the future might hold. 98% of the time I am upbeat but occasionally I really need to be sad and shed a few tears. I feel guilty but I need this and you do too!
When I first visited my surgeon, days after discovering I had cancer, I told her to take them both off! She performed a lumpectomy and double reduction (apparently F cups weren't desirable for radiation). At the end of the day, I have some scars but they are still my breasts and my nipples and I am so grateful that she talked me out of it. I can't imagine what you must feel to have some foreign lumps on your chest. You deserve to morn the loss of your breasts and there should be standard counselling for this.
I am rambling now but basically I am saying that you have every right to feel whatever emotions you feel. Give yourself the chance to feel, to be sad, to morn your loss. We are all taking this journey with you. Thank you for sharing.0 -
I read your post and I felt for you so much. I was all set to start typing a response to you but I got a phone call and had to put it off. So when I got back to your post I found that all the ladies here have said everything I wanted to say and said it beautifully. Emma, you have every right to vent your feelings. You are no different than the rest of us. You have had an extremely traumatic diagnosis like we all have. You've been through major surgery and are grieving for the loss of your breasts. Let alone your own trauma, this would have brought back the trauma of losing your mum. Your devastation and distress are perfectly understandable. And we all go through feelings of guilt and misery through this journey. Be kind to yourself Emma.
Sending you hugs
Janey xxx1 -
Thank you ALL for the messages of support. I was going to thank you all with a personal message, but my list of things to do today is growing, so I'm just doing a bulk message. I really appreciate the lovely things that you all said. This site is fantastic.
It is so good to be able to write how I'm feeling and have someone understand and know what you are going through. Even after posting my grumbling message I felt better. Just to put it out there helped with how I'm feeling. I have been through a lot (both in my personal life and my extended family) over the last 10 years and I guess I have always been looked upon as a strong person. One that has coped with 'everything' so well. One that has managed to work my way through things and come out stronger on the other side.
Over the last few months people have assumed that I'm coping well, and I guess this is what I have tried to put accross. I also believe that people would rather think that everything is ok, as some people don't like knowing what is really happening. Now that I look 'normal' on the outside (my breasts appear to be the same pre surgery) everyone assumes that my journey has ended. I get regular comments about how good I'm looking, which is frustrating as it's far from what I'm feeling inside. If I tell anyone what my hard uncomfortable lumps really feel like, the daily problems that they bring and that it will be this way for another 4 months before more surgery the response is often surprise.
I have tried to reach out to a few friends in the last week, but they haven't had the time to talk. I'm guessing that they are also assuming that I'm ok as the surgery was several months ago. It's so hard to find time for yourself to try and work through things, when you have 2 young boys and I work from home. Any spare time I have is spent at my desk trying to get work done. I know that I need to talk to a professional about what is going through my head. I guess I have just been thinking that it will all work out and be ok. I'm now looking for the positive me to return, so I can be productive - both with my family and work. Thank you again xxx
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Hi Emma. Sometimes friends are also struggling with their own feelings about what is happening to you. They just don't always know what to say or are scared of losing a person that means a lot to them. They feel guilty about putting their feelings first because they are just as scared as you about what is happening.
I had a friend that took 6 months to understand the tension between us was as much about her fear as it was about mine. Her husband had died in a road accident a few years earlier. We now have the good and supportive relationship we had before my diagnosis.
It had taken me 2 months, with the support of my husband, to realise that this was the reason the friendship became so strained.
Keep your spirit up and try to think of all the good things you do have when you hit a low spot in your journey.
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Hi Emma
You posted to me today to let me know you lived in Adelaide Hills. I have just been reading through these posts with tears rolling down my face. I am so much like you! I make everybody believe that I am doing ok (my husband included) but I'm not. I hate what i see in the mirror (if I bother to look). I am in the process of organising reconstructive surgery for early next year (likely a bilateral lat dorsi recon). My guilt is with an old friend I used to work with. When she heard of my diagnosis she went for a check of something she had been ignoring as a "back" problem. She has just finished chemo is about to start radio, lost her hair, lost a breast, has a poor outlook and as much as I want to be there for her and support her I feel guilty that she has had to endure so much more than me! It is a very personal journey and it does affect us all in so many ways. I did not have chemo but I did have 6 weeks of radio but the loss of my breasts is just devastating to me. I have gained weight and struggle on most days. I am sure all at work think I am over the worst of it and I'm all good again. If only the knew how much of a struggle it is for me to keep going to work when I would rather sit in a corner and hide. (not always but it does happen). I loved your post about feeling guilty and we all deserve the right to feel down at our loss sometimes. Hope all is going well with your reconstruction. Sharyn x
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