“Surviving” Life After Breast Cancer

Posted by lisman1408 @lisman1408, Sep 21, 2019

The Secret Suckiness of life after breast cancer. I love this article!!! It expresses so much of how I feel following diagnosis and now the continuing treatment for breast cancer! I know many of you on this site can relate! https://www.refinery29.com/en-us/2017/10/176194/life-after-breast-cancer-survivor-story

@lisman1408 Thanks for sharing – I had a good cry reading through. She hit on many points that we all go through. For myself, I've had two lesions and it's the second one that's a bomb buster just waiting when it will pop up in a different organ, brain, or bone. However, we can't live our lives in the "what ifs," we need to be in the "what can we do" mode….finding the balance, we're just on a tightrope and I don't want to fall!

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Wow, that's very powerful. It's like she read my mind. The post treatment isolation is almost worse than the physical problems. This isn't what I was expecting at all when I finished treatment. I
often wonder what's the point in surviving.

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@sunflower012

Wow, that's very powerful. It's like she read my mind. The post treatment isolation is almost worse than the physical problems. This isn't what I was expecting at all when I finished treatment. I
often wonder what's the point in surviving.

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@sunflower012– Welcome to Connect. It sounds as if you have been having a terrible time. I am a lung cancer survivor and I can really relate to the mental fog and memory loss that surrounds us with chemo/immunotherapy. It took quite a long time for me to get as much back as I was going to. I don't think that it all came back, especially memories. When someone does remind me that I did something or was someplace my surprise is always accompanied by a pleasant surprised of experiencing it all again. lol
At first no one's use to dealing with cancer. Cancer is like a freight train. I comes at you with full speed and it tramples you, leaving you to scrape up what is left.
There are so many phases that we go through after our "treatments" that it's difficult to pin point, at least for me, which one was worse. I know that losing your breasts is much different than losing lung lobes. Mine are not visible, but the sense of loss is still there even if no one can see it. I felt myself pull back from everyone but family with each of my 4 cancers and I don't know if my self isolation helped my recovery or not. During that time I had a chance, like many cancer patients, to exam life's questions and where I fit in. To me the point of surviving was that I had survived and I owed it to live my best in honor and in memory of all those who didn't make it. I felt that I needed to give hope, just by my survival and to tell my story so that others might do the same.
I do not think that the point of surviving has to be a complicated secret. Keeping things as simple as can be when times are tough might help. Does any of this makes sense?

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@merpreb

@sunflower012– Welcome to Connect. It sounds as if you have been having a terrible time. I am a lung cancer survivor and I can really relate to the mental fog and memory loss that surrounds us with chemo/immunotherapy. It took quite a long time for me to get as much back as I was going to. I don't think that it all came back, especially memories. When someone does remind me that I did something or was someplace my surprise is always accompanied by a pleasant surprised of experiencing it all again. lol
At first no one's use to dealing with cancer. Cancer is like a freight train. I comes at you with full speed and it tramples you, leaving you to scrape up what is left.
There are so many phases that we go through after our "treatments" that it's difficult to pin point, at least for me, which one was worse. I know that losing your breasts is much different than losing lung lobes. Mine are not visible, but the sense of loss is still there even if no one can see it. I felt myself pull back from everyone but family with each of my 4 cancers and I don't know if my self isolation helped my recovery or not. During that time I had a chance, like many cancer patients, to exam life's questions and where I fit in. To me the point of surviving was that I had survived and I owed it to live my best in honor and in memory of all those who didn't make it. I felt that I needed to give hope, just by my survival and to tell my story so that others might do the same.
I do not think that the point of surviving has to be a complicated secret. Keeping things as simple as can be when times are tough might help. Does any of this makes sense?

Jump to this post

Merry, thank you for your sensitivity to each of us. You have certainly gone through much more than I have. My cancer was found and treated at an early stage 2 breast cancer. Because it was found early, I needed only radiation. I was spared Chemo. and am very grateful for that. However, regardless of ‘stage’ of severity, or chances of survival; just having cancer in one’s body is so intense and frightening. I’m weary of being told that ‘I’m so lucky’. I fully agree, Yes, I AM fortunate that it wasn’t worse. But how can a diagnosis of cancer, in any form, really ‘be lucky’. In reality, I feel like I’m just waiting for it to be found again somewhere else in my body. I feel like, if my immune system didn’t find and destroy the cancer cells in the early phase of breast cancer, why would I have confidence that cancer isn’t lurking, unknown, somewhere else in my body? I am finding that I just keep my mouth shut, I don’t talk about, or express those fears, because… after all… ‘I’m lucky’: And I should “just get over it”… I am soooooo grateful for this group of women here on this web site! Thank you to each of you for your understanding.

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@lisman1408

Merry, thank you for your sensitivity to each of us. You have certainly gone through much more than I have. My cancer was found and treated at an early stage 2 breast cancer. Because it was found early, I needed only radiation. I was spared Chemo. and am very grateful for that. However, regardless of ‘stage’ of severity, or chances of survival; just having cancer in one’s body is so intense and frightening. I’m weary of being told that ‘I’m so lucky’. I fully agree, Yes, I AM fortunate that it wasn’t worse. But how can a diagnosis of cancer, in any form, really ‘be lucky’. In reality, I feel like I’m just waiting for it to be found again somewhere else in my body. I feel like, if my immune system didn’t find and destroy the cancer cells in the early phase of breast cancer, why would I have confidence that cancer isn’t lurking, unknown, somewhere else in my body? I am finding that I just keep my mouth shut, I don’t talk about, or express those fears, because… after all… ‘I’m lucky’: And I should “just get over it”… I am soooooo grateful for this group of women here on this web site! Thank you to each of you for your understanding.

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Totally agree

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@lisman1408

Merry, thank you for your sensitivity to each of us. You have certainly gone through much more than I have. My cancer was found and treated at an early stage 2 breast cancer. Because it was found early, I needed only radiation. I was spared Chemo. and am very grateful for that. However, regardless of ‘stage’ of severity, or chances of survival; just having cancer in one’s body is so intense and frightening. I’m weary of being told that ‘I’m so lucky’. I fully agree, Yes, I AM fortunate that it wasn’t worse. But how can a diagnosis of cancer, in any form, really ‘be lucky’. In reality, I feel like I’m just waiting for it to be found again somewhere else in my body. I feel like, if my immune system didn’t find and destroy the cancer cells in the early phase of breast cancer, why would I have confidence that cancer isn’t lurking, unknown, somewhere else in my body? I am finding that I just keep my mouth shut, I don’t talk about, or express those fears, because… after all… ‘I’m lucky’: And I should “just get over it”… I am soooooo grateful for this group of women here on this web site! Thank you to each of you for your understanding.

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@lisman1408; @dottieh– Thank you. It's unfortunate that the word cancer has become a cancer in itself, few people really know how to react to someone who has cancer. I have even had trouble. At the beginning of my journey I knew what I didn't want to hear but I had no idea what I wanted to hear. Unless you want to be that screaming person in line just nod your head and let the remarks go. Unless of course you can't, like me sometimes. There is no good cancer. All cancer is bad. And it can come back and that petrifies us, and why shouldn't it? To those who really are insensitive maybe tell them the truth, in a calm way- tell them that "what they say makes you feel …" Educate them. Tell them that no, I am not lucky, lucky is not ever having cancer.
Don't you think that we need to educate people not to be afraid of the word?

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@merpreb

@sunflower012– Welcome to Connect. It sounds as if you have been having a terrible time. I am a lung cancer survivor and I can really relate to the mental fog and memory loss that surrounds us with chemo/immunotherapy. It took quite a long time for me to get as much back as I was going to. I don't think that it all came back, especially memories. When someone does remind me that I did something or was someplace my surprise is always accompanied by a pleasant surprised of experiencing it all again. lol
At first no one's use to dealing with cancer. Cancer is like a freight train. I comes at you with full speed and it tramples you, leaving you to scrape up what is left.
There are so many phases that we go through after our "treatments" that it's difficult to pin point, at least for me, which one was worse. I know that losing your breasts is much different than losing lung lobes. Mine are not visible, but the sense of loss is still there even if no one can see it. I felt myself pull back from everyone but family with each of my 4 cancers and I don't know if my self isolation helped my recovery or not. During that time I had a chance, like many cancer patients, to exam life's questions and where I fit in. To me the point of surviving was that I had survived and I owed it to live my best in honor and in memory of all those who didn't make it. I felt that I needed to give hope, just by my survival and to tell my story so that others might do the same.
I do not think that the point of surviving has to be a complicated secret. Keeping things as simple as can be when times are tough might help. Does any of this makes sense?

Jump to this post

@merpreb
I can so relate to your reaction of self-isolation but perhaps for different reasons. When going through chemo, I was focused on self-preservation — driving to-and-from treatments, shopping, going to the gym, paying bills. Yes, people offered to drive me, but that would mean having to deal with their issues (infusions lasted 4 hours each week and they would not be so enthused about helping after their first experience with that). And I found that many of their questions and comments were anxiety-producing, especially the friends who had had cancer and only needed a round of radiation. They were totally clueless about hormone receptors and HER2. (This was true even for members of my local Cancer Community group.) Often they wanted to influence me with their minimal treatment choices or their friends' choices, as if one could compare diagnoses and treatments. I had done a lot of research on my diagnosis, and they had done none on theirs… and they wanted to tell me how they were now "cancer-free," and I knew that I could never make that claim under the circumstances.

The majority of my friends didn't want to acknowledge my cancer journey at all. The subject was terrifying to them and so I kept it to myself. They also made the assumption that, when the chemo was completed, that I should be able to jump right back into business-as-usual. (It's been nearly two years, and I'm still wrestling with chemo brain and the crippling after effects of chemo-induced neuropathy.) There was only one friend, living in a state about 800 miles away, who truly had a handle on it all because of her science background. God bless her.

So, yes… self-isolation can be a reasonable reaction to The Emperor of All Maladies.

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@merpreb

@lisman1408; @dottieh– Thank you. It's unfortunate that the word cancer has become a cancer in itself, few people really know how to react to someone who has cancer. I have even had trouble. At the beginning of my journey I knew what I didn't want to hear but I had no idea what I wanted to hear. Unless you want to be that screaming person in line just nod your head and let the remarks go. Unless of course you can't, like me sometimes. There is no good cancer. All cancer is bad. And it can come back and that petrifies us, and why shouldn't it? To those who really are insensitive maybe tell them the truth, in a calm way- tell them that "what they say makes you feel …" Educate them. Tell them that no, I am not lucky, lucky is not ever having cancer.
Don't you think that we need to educate people not to be afraid of the word?

Jump to this post

Merry, I sooooo agree with you! But some people REFUSE to be educated. In my case, even several family members refer to my experience as “I was so lucky that it wasn’t worse”. Yes, I am fortunate that it was found at a stage II. But that doesn’t mean that my cancer therefore wasn’t ‘real’. Even my sister in law expected me to host her, her husband, and two teenage kids at our house for a few days while they were in our area on vacation; when I was finishing up radiation. After all my situation wasn’t so bad, my cancer was only a stage II…

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@lisman1408

Merry, I sooooo agree with you! But some people REFUSE to be educated. In my case, even several family members refer to my experience as “I was so lucky that it wasn’t worse”. Yes, I am fortunate that it was found at a stage II. But that doesn’t mean that my cancer therefore wasn’t ‘real’. Even my sister in law expected me to host her, her husband, and two teenage kids at our house for a few days while they were in our area on vacation; when I was finishing up radiation. After all my situation wasn’t so bad, my cancer was only a stage II…

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@lisman1408 By any chance, are you single or do you have a partner? It would be helpful if that person could take them aside and speak frankly with them. My husband was my champion throughout. And my family understood what was going on. I am quite fortunate. My son and daughter-in-law even spoke to my 4 and 7-year-old grandies. They would all know to come in to my bedroom quietly to see if I was awake and then sit and chat. Even since recovering from most effects, if relatives are around and I am too tired I just excuse myself and my husband then entertains. Are there any support groups in your area you could try to attend? I find it is helpful to be able to speak candidly with those going through the same thing. I hope things go better for you.

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@lisman1408

Merry, I sooooo agree with you! But some people REFUSE to be educated. In my case, even several family members refer to my experience as “I was so lucky that it wasn’t worse”. Yes, I am fortunate that it was found at a stage II. But that doesn’t mean that my cancer therefore wasn’t ‘real’. Even my sister in law expected me to host her, her husband, and two teenage kids at our house for a few days while they were in our area on vacation; when I was finishing up radiation. After all my situation wasn’t so bad, my cancer was only a stage II…

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@lisman1408 – perhaps it's time to agree with them? And since you tell them that you agree then you can also remind them that they need not mention it again.
I agree with @trixi1313 someone needs to be your advocate with your sister. I kept mine away. Right now you are number 1! Your mental health has so much to do with your total healing. You might need to separate yourself from those people who are insensitive to your needs and well being.
Can you or someone else set some limits so that you are protected? This is not the time for being polite to people who don't have your back!

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