Family and friends reactions to diagnosis

Posted by frogjumper @frogjumper, Dec 19, 2022

Maybe it's me but I find people's behavior fascinating. So my question and personal observation are kind of funky!
First I knew when I told people I would sugar coat it, and maybe because of this the reactions have all been "wow sounds like you have it under control" or some not knowing what to say at all, others hiding their feelings. And worse those that say really stupid things that come across as mean and blaming. And then the sister who I would never have guessed it has been the best sister ever!!! So overall some gains and losses! I will hold onto the gains and avoid the losses.
In my humble opinion part of the healing process is emotional support and we all need it as much as any chemo, radiation or surgery.
As a side note I only told my adult children, sisters, and 3 acquaintances and no one else.

How about you all, what were the reactions you received?

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

tasher3433 | @tasher3433 | Jun 3, 2023

In reply to @auntiephil "It means everything. I’ve learned that people don’t know what to do or say, so they..." + (show)

I wish you both enough.

auntiephil | @auntiephil | Jun 2, 2023

In reply to @jaynep "That’s why we’re hear to support one another and it means so much." + (show)

It means everything. I’ve learned that people don’t know what to do or say, so they just stay away. I was more concerned for my son, who was terrified ( but focused on the positive ..he didn’t know, that I knew he was scared). He had no support and it was a heartbreaking discovery to me. It’s just my son and I, we have family and friends, but they were invisible. People treat cancer like the flu sometimes, you’re treating it, it will be over soon, don’t talk about it. Hard lessons to learn.

Zebra | @californiazebra | Jun 1, 2023

It is interesting to read everyone’s story. Lots of similarities of both heartwarming and disappointing reactions from our friends and family.

When I was first diagnosed with breast cancer and the BRCA2 mutation in 2013, I had a double mastectomy and ovaries/tubes out at the same time. Not recommended to disable yourself high and low at the same time. My entire family was notified because of the BRCA2 mutation. I also told my friends. I told my closest colleagues, but most colleagues never knew. I am divorced and knew it would be a less lonely journey if I had the support of those around me.

A colleague who was just wrapping up her breast cancer treatment told me, “There will be people you thought would stand by you that will disappear and then there will be others you hardly know that will step up to help you in a big way. Your cancer journey will be very enlightening.” She was so right.

I was very disappointed by some people I thought would be supportive but either disappeared, made callous statements or made canned statements that struck me as pseudo-support. Mostly, I was amazed by the kindness and sacrifice of many others, friends and family. My cousin and my best friend both took significant time off work to stay with me and help me post-op with a terrible recovery due to 2.5 weeks of unbearable pain from the abdominal surgery (neuropathy amps up pain) and my inability to take pain meds. I also couldn’t move my arms away from my sides before I had PT. I was struggling for sure.

A friend from high school I hadn’t seen in 20 years, but was still in touch offered to take a week off work and fly out to stay with me. I declined, but was so touched by the offer. After my two consecutive caretakers went home, several colleagues took turns coming over before and after work to walk my three dogs for me because I live in a condo with no yard. One person I barely knew. That was all so heartwarming and desperately needed. Lots of other people called, emailed and stopped by to visit during my recovery. Right when the surgical pain improved, I got shingles with severe pain that left me unable to sleep for 2.5 more weeks, but I could care for myself and dogs. Right when I went back to work after 6 weeks, an off-leash dog attacked my dog causing me to fall and break my right wrist. Not helpful.

That reminds me, I didn't have enough vacation time so my colleagues on my team all donated part of their vacation time to cover my remaining time off so I wouldn't have reduced pay. My VP gave me all of her remaining 9 days. Again, I was so touched!

My breast cancer came back in 2020 and I was diagnosed with unrelated lung NETS (50+ tumors) at the same time. I had surgery, other procedures, radiation treatments, collapsed lung twice, etc. that left me unable to walk my dogs or run errands. I have an amazing friend/neighbor who took care of all that for me each time and without hesitation. I received lots of phone calls, texts, gifts and greeting cards from so many people especially the first year. Again, it was all very heartwarming.

I’m now on 3 cancer meds indefinitely that cause significant fatigue along with other side effects, but I can do what I need to do. My last dog passed away 5 months ago so dog walking assistance won’t be an issue in the future. Many neighbors don’t know about my cancer because I didn’t want to be referred to as the lady with cancer. The majority of people that know about my cancer haven’t asked how I am doing in a year or two either because I look fine, they forgot or they assume I’m cured. Those closest to me still ask for a periodic status update and I know they will be available if needed. It’s an interesting journey to say the least.

Many of the women on this message board have mentioned in the various breast cancer threads that they have a loving, supportive husband 24/7 and I try to imagine what that would be like vs. living alone. When the immediate crisis is over and support starts to wane, the appointments, paperwork and side effects from meds all continue and you start to feel alone on the cancer front. It’s hard to wear all the hats sometimes.

Overall, I received the support I needed during my crises and discovered there are a lot of people in my life that are truly a blessing. The positives have far outweighed the negatives as far as people are concerned. Like others have said, cancer leads to personal growth. It has helped me re-evaluate relationships and everything else in my life. I also now appreciate each day more. Blessings to all of you on this journey. 🙂

I’ve always loved the song by Tim McGraw, “Live Like You Were Dying.” It says it all.

cmdw2600 | @cmdw2600 | Feb 26, 2023

In reply to @rhongirl "@cmdw2600 We are sisters in the Triple Neg Club, Cindy, though not really a club I..." + (show)

That is very helpful post! What an innovative idea by your daughter that I hope others reading this will implement if the need arises for someone they care about. The continuation of “thinking of you” messages in any form means so much. My journey was nine months long from diagnosis to completion of radiation and the ongoing support definitely helped me through.

Thank you for taking the time to write this, and I hope you are well! Cindy

rhongirl | @rhongirl | Feb 25, 2023

In reply to @cmdw2600 "This has been an interesting thread. There’s a country song that says it all-“Find out Who..." + (show)

@cmdw2600 We are sisters in the Triple Neg Club, Cindy, though not really a club I wanted to join - but I guess the admittance was not optional. ;). Thankfully, I am still here, as are you, and we can speak to what we've learned, and how that might impact others in a more positive way.

My daughter created a "card train" for me. . . she had a sign up for those who would send cards to me (daily) and those who would send flowers to me (weekly) during the months of my cancer treatment. I was shocked to learn that the list was made up of, almost entirely, clients. My clients are all over the country. . . and they came to my rescue! (People were waiting each month for the sign-up to be released so they could take the flower spot :D). The handwritten notes and cards were such a blessing to me - so. much. encouragement. I posted some of them to my bathroom mirror to look at everyday. I would make myself read some of them aloud, just so I could hear myself say the positive messages. What a gift that was to me!

So, whereas my post for sharing how many others were not there as much for me (physically, emotionally, or otherwise), there was a village of people who went to task for me and put their pens to paper!

cmdw2600 | @cmdw2600 | Feb 24, 2023

This has been an interesting thread. There’s a country song that says it all-“Find out Who Your Friends Are” by Tracey Lawrence. Even if you don’t like country music, it’s worth a listen.

I was diagnosed with triple negative breast cancer spring of 2019. That nine months of treatment was an eye opener regarding the people in my life. One couple actually made the statement that they don’t text, email, call or send cards when people have health problems. How they developed that policy, I do not know. On the flip side, a peripheral friend would text to say she had left a cooler of meals on my front porch-some frozen for another day and some for that evening. I was blown away by her kindness.

Of course there were many responses between these two extremes. I received so many cards, which I greatly appreciated. Many people (even my husband’s golf partner’s wife, who doesn’t really know me) would send them frequently, not just when I was diagnosed. That helped get me through the days when I was not feeling well, worried, fatigued, etc.

People are complicated and have reasons for their responses or lack thereof. Some are just more empathetic than others I guess. I have learned through my own experience and I hope I will fully step up to the plate when needed by others.

Best wishes to all, Cindy

jaynep | @jaynep | Feb 23, 2023

That’s why we’re hear to support one another and it means so much.

rhongirl | @rhongirl | Feb 22, 2023

In reply to @tasher3433 "Thank you got this. I have not been in your shoes, but I have learned, today,..." + (show)

I'm glad, @tasher3433. These words were pivotal to me, too, when I heard them, and impact me often.

I went to see a dear friend last month, a courageous woman who had battled with breast cancer for four years. The last time I visited her, I confess, my heart was heavy about going. I both wanted and did not want to go. I knew her days were few now, but for her sake and for her husband's, I needed to go. When I saw her, her body was contorted in pain, she spoke very little, and her eyes were locked on mine for only moments at a time. I had no words. Absolutely nothing. I could barely speak. What could I say? She was lying there, in her final hours of life. I did the only thing I knew, and that was to drop to my knees by her bedside, and stroke her hand in silence.

Had I not gone, I would have given up the opportunity to respond in a way that communicated my love and care for her. It would have been easy to stay home, and I honestly wanted to, because I was hurting so - but I did not want my response to be a no-response, and I went.

I think God uses whatever we have to offer, even when our efforts seem so feeble at times. I think those efforts can be multiplied and do good. So, in that spirit, we just all keep doing life as best we can. And that is what touches lives for the better. :).

Thank you for your well-wishes.

rhongirl | @rhongirl | Feb 22, 2023

In reply to @frogjumper "Your life with dealing with cancer with both your child and yourself and your outlooks I..." + (show)

Thanks, @frogjumper. Your words are kind. We know that we never stay the same in life. . we either move towards one way (to good) or the other way (to the not-so-good). Our lives are not static. There are times I've let other people's responses hurt me, and that's part of my own response, but then I have to wrestle with it a bit and let it go. I'd like to say I wrestle less now than when I was younger. . . my husband might say, "sometimes". ;). But underneath it all, I want something good to come out of the hardship, both in me, and for those around me. It's a choice, I think. And I thank God that He helps me choose this. Prayers for strength and courage as you wrestle though your own breast cancer journey. You can do it. 😀

tasher3433 | @tasher3433 | Feb 22, 2023

In reply to @rhongirl "@frogjumper When our son of 15 months was diagnosed with cancer, I learned quickly that the..." + (show)

@rhongirl

@frogjumper

When our son of 15 months was diagnosed with cancer, I learned quickly that the diagnosis wasn't just hard for me, but for everyone else around me. My only brother didn't speak to me for two years (he was unable to deal with the trauma). My only sister sent me a bower of flowers (3' high, honestly) that looked like funeral flowers, and then didn't speak to me for . . . almost as long as my brother. My mother-in-law came over to ask me where my "list" was (you know, that "list" for thank you's you are supposed to write because someone brought you cookies - because they didn't know what else to do). By the way, we only received a few gifts of cookies, because everyone stayed away. And honestly, in that season of life, I was just trying to breathe in and out every day, I had no emotional energy for a "list". My father-in-law stayed angry the entire week (and even years later) our son was in the hospital after his cancer surgery. . . he was angry because I was clinging to my husband at that time, only wanting to be with him during the waiting of the surgery. I couldn't bear to be around anyone else at that time - everything was so consumingly raw. Our church congregation? No one came. (We were very active church members.) I became almost disillusioned with our church family, because if they didn't know what to do, who does? I was a young mom in my mid-twenties with three children and a husband who turned to work to get through the trauma. I didn't blame him, he did what he needed. He took 5 years to come to terms with our son's cancer. My parents were there (on the phone) to some degree - but they were suffering, too. I felt alone. . . three children under the age of 5, and one of them who needed my constant care through surgery and then chemo, and everything else in-between.

Fast forward over 30 years, I am diagnosed with breast (and a year later, uterine) cancer. Some things have changed in my experiences, and some, maybe not so much. There are still those who don't know what to do or say, so they do or say nothing. Or there are those who say something (we call it, filling-the-airwaves) because they feel they have to say something, and it ends up being the wrong thing. (I think that might be what you are referring to as "really stupid things".) Then, there are those who are watching and feeling the pain with you, but can't bear to be there, alongside you. Then, there are those who are just too busy in life. Then, there are those who just plain gossip about the next bad thing that happens to someone. And then, there are those like your sister, who rise up and jump in with you, even when it's hard to do. So, yes, I think you hit it square when you said there are "gains and losses".

My story is not any better, nor any worse, than anyone else's, it is just my story. It gives me a point of reference in life. I know my story pretty well, and though others around me might try to understand my story, they might not be able to. I think people genuinely care. Of course, they do. And I think people are genuinely good - or at least want to be. (I have to believe this in life 🙂 ). Some people are born with that gift of compassion, and it comes naturally. Some people have an opportunity to learn compassion when they endure hardship (I say "opportunity" because we always have a choice to learn something from trials, but the question is, rather, if we open ourselves up to being a student at the time). And some people want to care, but they find themselves so consumed by life that they don't have the mental, nor the emotional, space to do something about it.

One of my daughters-in-law shared something profound with me during my cancer journey - and that was "no response is still a response". She was taught that no-response was unacceptable. How wise of her parents! Because, we are ALL responding ALL of the time. . . and by not responding, we are actually responding. Wow, how true is that? even in my own life.

Having walked through cancer with our infant son (he is now 32, hallelujah!), and breast/uterine cancer, I find that people are still just. . . people. . . and many of us are all trying to move through this life with some amount of poise and grace, love and kindness. Someone who has not walked through this breast cancer journey cannot understand. So, I continue to work at trying to give them compassion and extending understanding. I'm not always successful at it, but the point being, I am trying. . . trying to make something good of the terrible ordeal that happened to me. . . trying to help educate others about compassion . . . both in my need for it, and my need to extend it to others. (And to be fair, they are likely "trying", too!)

I've shared this before - breast cancer is messy. But so is all of life. It takes a conscious effort to engage, never more pronounced than in trauma. It's my prayer that you hold fast to those who can and are there for you during this trial, and then, let go of those who cannot or will not be there. Sometimes I differentiate between those who cannot (physically or emotionally) and those who will not (they can, but make the choice not to). I've learned differentiating is not as fruitful, and results in hard feelings . . . so, rather, it becomes a matter of letting it all go. I'm still a work-in-progress, and I continue to work to let those things GO.

Being real. I learned this lesson through our son's cancer, and I continue to delve deeper into this realness even over 30 years later. People can't help you if they don't know. Even their feeble efforts of trying to be there for us can't happen if we don't let them know. Sometimes we want help, and sometimes we don't want to be helped - but part of this compassion and understanding is to first let others know our need. It's hard. It's vulnerable. No, it's crazy vulnerable. . . . but it is what it is. . . and people cannot begin to attempt to help us if they aren't aware of the need. That life lesson is still one I work on. 🙂

I used to swim at an area college, and they had a mammoth sign on the wall that read "STRONG AND SMOOTH". I still remember that sign. . . it helped me swim steady and hard at the time when I did my laps, not wasting effort with undesirable movements in my stroke. Today, it reminds me to just bear down and push through smoothly, not wasting my effort on things that produce ill-effects, slowing me down. That's hard work! But so isn't getting through breast cancer. So, my hope is that you move through this breast cancer strong and smooth. Hugs 🙂

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Thank you got this. I have not been in your shoes, but I have learned, today, that “no response is still a response.” I wish you enough💕