“Surviving” Life After Breast Cancer

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...

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...

@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.

@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!

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.

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

@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.

@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.

@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.

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.