1. < Breast Cancer

“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

Interested in more discussions like this? Go to the Breast Cancer Support Group.

trixie1313 | @trixie1313 | Oct 15, 2019
In reply to @lisman1408 "Merry, I sooooo agree with you! But some people REFUSE to be educated. In my case,..." + (show)
@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.

REPLY
1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Oct 15, 2019
In reply to @lisman1408 "Merry, I sooooo agree with you! But some people REFUSE to be educated. In my case,..." + (show)
@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...

Jump to this post

@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!

REPLY
1 reply
lisman1408 | @lisman1408 | Oct 15, 2019
In reply to @trixie1313 "@lisman1408 By any chance, are you single or do you have a partner? It would be..." + (show)
@trixie1313

@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.

Jump to this post

Trixie, I’ve been married for 36 years. Unfortunately it was my husband who told his sister it would be ok for her family to stay with us for a few days when they were in town. It was last year, but sometimes it still hurts that his side of the family just doesn’t understand. I love my husband dearly, but he adores his little sister, she is like his daughter rather than his sibling, and often she comes first... I’ve learned to live with it, but at the time when I was going through radiation treatment, it was very hurtful.

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1 reply
lisman1408 | @lisman1408 | Oct 15, 2019
In reply to @merpreb "@lisman1408 - perhaps it's time to agree with them? And since you tell them that you..." + (show)
@merpreb

@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!

Jump to this post

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

REPLY
1 reply
trixie1313 | @trixie1313 | Oct 15, 2019
In reply to @lisman1408 "Trixie, I’ve been married for 36 years. Unfortunately it was my husband who told his sister..." + (show)
@lisman1408

Trixie, I’ve been married for 36 years. Unfortunately it was my husband who told his sister it would be ok for her family to stay with us for a few days when they were in town. It was last year, but sometimes it still hurts that his side of the family just doesn’t understand. I love my husband dearly, but he adores his little sister, she is like his daughter rather than his sibling, and often she comes first... I’ve learned to live with it, but at the time when I was going through radiation treatment, it was very hurtful.

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@lisman1408 It is not only hurtful with the burns, but it is extremely debilitating. I had 30 radiation treatments. I've been married 40 years now and still need to direct my husband. If any time you are feeling overwhelmed, talk to him and ask him to really listen. Men can't always figure it out. Our facility just started a caregiver's support group that meets the same time as the cancer group. If you have anything like that in your area, it would be good for your hubby to check out. Mine was not going to go and I just said to please go once for me. Well, he not only went to the first one, but he's been to 4 in a row! It gives them a chance to vent with their feelings because, yes, they are frightened for us as well but don't always know how to express their feelings or what to do about them. I hope things go better for you.

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Mentor
Merry, Volunteer Mentor | @merpreb | Oct 16, 2019
In reply to @lisman1408 "Thank you Merry! It’s done and over with now. But at the time it was particularly..." + (show)
@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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Mentor
Merry, Volunteer Mentor | @merpreb | Oct 16, 2019
In reply to @elizm "@merpreb I can so relate to your reaction of self-isolation but perhaps for different reasons. When..." + (show)
@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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1 reply
elizm | @elizm | Oct 16, 2019
In reply to @merpreb "@elizm - You eloquently described exactly what a lot of people do. I think that it's..." + (show)
@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.

Jump to this post

@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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1 reply
lisman1408 | @lisman1408 | Oct 17, 2019
In reply to @elizm "@merpreb I can so relate to your reaction of self-isolation but perhaps for different reasons. When..." + (show)
@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.

Jump to this post

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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2 replies
elizm | @elizm | Oct 17, 2019
In reply to @lisman1408 "Elizm, I am one of those who “only needed a round of radiation”... and no, I’m..." + (show)
@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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