“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

Liked by trixie1313, elizm, elb721

@lisman1408

Thank you Merry! It’s done and over with now. But at the time it was particularly hurtful.

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@lisman1408 – I'm very very glad that time is over for you. But for many people it's not and we, me included, have to be particularly sensitive to those hurtful times. Thank you for sharing your story, it really helps to open the mind!

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@elizm

@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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@elizm – You eloquently described exactly what a lot of people do. I think that it's important to be helpful but that doesn't m ean offering advice, medical advice. I wish you well on your recovery. What kinds of things are you doing to help lessen, if possible, with chemo brain? I watched cooking shows.

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@merpreb

@elizm – You eloquently described exactly what a lot of people do. I think that it's important to be helpful but that doesn't m ean offering advice, medical advice. I wish you well on your recovery. What kinds of things are you doing to help lessen, if possible, with chemo brain? I watched cooking shows.

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@merpreb
Chemo brain has been humiliating and humbling. The first year (2018) was the worst where I would show up for appointments, for example, either on the right day but the wrong time, or the wrong day but the right time, and sometimes the appointment just slips my mind completely. This past year, it comes and goes, and is not quite as challenging. Yes, my life is littered with Post-It notes. Although math was never a challenge for me, I found even easy calculations to stump me during the first year-and-change. Word choices can be frustrating, as can multi-tasking and a tendency toward procrastination.

I've read that chemo brain can last up to five years, however, I've noticed a lessening over time (thank goodness). My oncologist and NP have no suggestions except to keep on keeping on. (I had extensive nerve damage with chemo, so I suppose that all of this is unsurprising to them.) My personal "treatments" are exercise and reading, hoping they will help retrain what's left of my brain.

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@elizm

@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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Elizm, I am one of those who “only needed a round of radiation”… and no, I’m not ‘clueless about hormone receptors or HER2’. I likely am not as informed as you are because my cancer was different than yours. But please don’t refer to me as ‘clueless’. I regret you have had to endure a very difficult treatment for your situation; and that your friends ‘didn’t understand’. It is truly very unfortunate that you found your friends to be belittling. I’m truly sorry they have made you feel that way. But please don’t follow in their footsteps and ‘belittle’ those of us who are here to support one another regardless of our diagnosed ‘stage’ of cancer, or what the treatment plan is/was for each of us. We are not in competition here to see who has the ‘worst case’ of breast cancer, or the most difficult recovery. Best wishes to all on this forum.

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@lisman1408

Elizm, I am one of those who “only needed a round of radiation”… and no, I’m not ‘clueless about hormone receptors or HER2’. I likely am not as informed as you are because my cancer was different than yours. But please don’t refer to me as ‘clueless’. I regret you have had to endure a very difficult treatment for your situation; and that your friends ‘didn’t understand’. It is truly very unfortunate that you found your friends to be belittling. I’m truly sorry they have made you feel that way. But please don’t follow in their footsteps and ‘belittle’ those of us who are here to support one another regardless of our diagnosed ‘stage’ of cancer, or what the treatment plan is/was for each of us. We are not in competition here to see who has the ‘worst case’ of breast cancer, or the most difficult recovery. Best wishes to all on this forum.

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@lisman1408
I fear that you have misunderstood my post. You may notice that I was responding to a post by @merpreb who was wondering if her self-imposed isolation was a rational reaction. I was explaining to her why, I, too, eventually chose isolation. Your unfounded reaction is another example of why I likely will pull further back.

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@elizm

@lisman1408
I fear that you have misunderstood my post. You may notice that I was responding to a post by @merpreb who was wondering if her self-imposed isolation was a rational reaction. I was explaining to her why, I, too, eventually chose isolation. Your unfounded reaction is another example of why I likely will pull further back.

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@lisman1408 and @elizm, it is with heavy heart that I see a potential conflict brewing. Thank you both for airing your disappointment and hurt. I agree with many of the points that each of has made. Lisman, you were not being singled out. Elizm was recounting how some people couldn't relate to her cancer experience, even people who had also had cancer but different treatments. The discussion focuses on well-intended but unhelpful even hurtful things people say. Understandably you were hurt when you felt specifically targeted as someone who had "only radiation." As Merry so aptly said, cancer is cancer. There is no good cancer.

@lisman1408 you're right. Let's not allow this discussion to devolve into a competition of comparison. But rather remain a sisterhood of support and understanding where people feel safe to say what's on their mind, even the tough stuff, and not be judged.
@elizm, I urge you to not retreat but to continue to share and help us all to understand multiple perspectives.

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@colleenyoung

@lisman1408 and @elizm, it is with heavy heart that I see a potential conflict brewing. Thank you both for airing your disappointment and hurt. I agree with many of the points that each of has made. Lisman, you were not being singled out. Elizm was recounting how some people couldn't relate to her cancer experience, even people who had also had cancer but different treatments. The discussion focuses on well-intended but unhelpful even hurtful things people say. Understandably you were hurt when you felt specifically targeted as someone who had "only radiation." As Merry so aptly said, cancer is cancer. There is no good cancer.

@lisman1408 you're right. Let's not allow this discussion to devolve into a competition of comparison. But rather remain a sisterhood of support and understanding where people feel safe to say what's on their mind, even the tough stuff, and not be judged.
@elizm, I urge you to not retreat but to continue to share and help us all to understand multiple perspectives.

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Thank you Colleen!

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@colleenyoung

@lisman1408 and @elizm, it is with heavy heart that I see a potential conflict brewing. Thank you both for airing your disappointment and hurt. I agree with many of the points that each of has made. Lisman, you were not being singled out. Elizm was recounting how some people couldn't relate to her cancer experience, even people who had also had cancer but different treatments. The discussion focuses on well-intended but unhelpful even hurtful things people say. Understandably you were hurt when you felt specifically targeted as someone who had "only radiation." As Merry so aptly said, cancer is cancer. There is no good cancer.

@lisman1408 you're right. Let's not allow this discussion to devolve into a competition of comparison. But rather remain a sisterhood of support and understanding where people feel safe to say what's on their mind, even the tough stuff, and not be judged.
@elizm, I urge you to not retreat but to continue to share and help us all to understand multiple perspectives.

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@collenyoung and all. I have no power and will be back on hopefully within the next couple of days.

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@elizm

@merpreb
Chemo brain has been humiliating and humbling. The first year (2018) was the worst where I would show up for appointments, for example, either on the right day but the wrong time, or the wrong day but the right time, and sometimes the appointment just slips my mind completely. This past year, it comes and goes, and is not quite as challenging. Yes, my life is littered with Post-It notes. Although math was never a challenge for me, I found even easy calculations to stump me during the first year-and-change. Word choices can be frustrating, as can multi-tasking and a tendency toward procrastination.

I've read that chemo brain can last up to five years, however, I've noticed a lessening over time (thank goodness). My oncologist and NP have no suggestions except to keep on keeping on. (I had extensive nerve damage with chemo, so I suppose that all of this is unsurprising to them.) My personal "treatments" are exercise and reading, hoping they will help retrain what's left of my brain.

Jump to this post

@elizm– Good morning- I am sorry that I have not responded to this in a couple of days. The NE coast was hammered by a severe, hurricane like storm and we just got our power back mid afternoon, yesterday.
Exercising is one activity that has been scientifically shown to help the brain and reconnect all the loose wires that chemo can cause. I can feel it's effects if I lay off for a while and then get back to it! It's like a light bulb getting brighter! Writing is my favorite and has helped me fight PTSD and strengthened my brain! Do you think that we select activities that we are drawn to the most in our hearts as the ones that help us the most?

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@lisman1408

Elizm, I am one of those who “only needed a round of radiation”… and no, I’m not ‘clueless about hormone receptors or HER2’. I likely am not as informed as you are because my cancer was different than yours. But please don’t refer to me as ‘clueless’. I regret you have had to endure a very difficult treatment for your situation; and that your friends ‘didn’t understand’. It is truly very unfortunate that you found your friends to be belittling. I’m truly sorry they have made you feel that way. But please don’t follow in their footsteps and ‘belittle’ those of us who are here to support one another regardless of our diagnosed ‘stage’ of cancer, or what the treatment plan is/was for each of us. We are not in competition here to see who has the ‘worst case’ of breast cancer, or the most difficult recovery. Best wishes to all on this forum.

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@lisman1408– Since Colleen already addressed your discussions with @elizm I will let it be. I will however attest to the fact that many, many people are "clueless" when it comes to knowing anything about their own bodies. Having lung cancer opened up a new vocabulary and "job" for me. By job I mean learning all about my lung cancer, bio of my lungs and the cancer that invaded me. I feel that it is every cancer patient's responsibility and job to learn as much as they can about their cancer. Knowledge is power and there is a huge sense of loss of power when it comes to having cancer. I mean, we turn our whole life over to the insurance and medical fields- how scaryl is that?
But even so many people chose to hide from knowing everything that there is so that they can separate themselves from reality, that of having cancer. I found that the more I learned the less tension that I found during my doctor's appointments because I was a better patient and he was a better doctor.
Any ideas how we can open up other people's minds to learning more?

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I spent endless hours reading and learning about breast cancer. Although I was never a great student, I just kept wanting to learn more. I guess because the topic was so important to me. One of the things that stands out is an appreciation for the years of hard work and dedication that went into groundbreaking discoveries such as HER2 and Herceptin. I realize I took many things for granted and thankful so many people dedicated their lives to these discoveries.

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@cfacarol– Hear hear! Exactly. Imagine cancer without CT scans, Xrays or MRI!

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@merpreb

@lisman1408– Since Colleen already addressed your discussions with @elizm I will let it be. I will however attest to the fact that many, many people are "clueless" when it comes to knowing anything about their own bodies. Having lung cancer opened up a new vocabulary and "job" for me. By job I mean learning all about my lung cancer, bio of my lungs and the cancer that invaded me. I feel that it is every cancer patient's responsibility and job to learn as much as they can about their cancer. Knowledge is power and there is a huge sense of loss of power when it comes to having cancer. I mean, we turn our whole life over to the insurance and medical fields- how scaryl is that?
But even so many people chose to hide from knowing everything that there is so that they can separate themselves from reality, that of having cancer. I found that the more I learned the less tension that I found during my doctor's appointments because I was a better patient and he was a better doctor.
Any ideas how we can open up other people's minds to learning more?

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Thank you, Merry, for your response and kindness. In answer to your question about opening minds… I truly wish I had a great reply to that! I think the article that I posted originally and started this thread with, “The Secret Suckiness of Life after Breast Cancer”, is the closest I have found that reflects the feelings of many who are recovering from breast cancer. It resonated with me, and helped me to explain my feelings to family and friends. I wanted to share it with others here, hoping it would be of benefit to them. If you haven’t read that article please do. I know it’s easy to skip since it’s at the very beginning. For me, this article very much describes many of the emotions and feelings I have gone though. Cancer ‘sucks’, regardless of circumstances!

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