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Im not on a "journey" and Im not a "warrior." Who is with me?

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  • grandmaadams
    grandmaadams Member Posts: 39
    edited August 2021
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    Wow ... I just found this thread. So much of this hits home. My BC was diagnosed May 2018. I was told by my doctor that I was LUCKY I got a type of cancer that was treatable (lumpectomy and radiation) and I would be fine ???? Lord knows I have lost friends to cancer, a dear friend who struggled for four years, but I can't wrap my head around anything having to do with cancer as LUCKY.

    My diagnosis was in 2018. I reached out to a sister-in-law who was a nurse and had been through bc herself along with several female members of her family. She was the rock I needed. The last thing I wanted was for someone to look at me as though I was to be pitied and get that voice change that sounds like they're talking to someone who is mentally challenged and tell me that God has a plan and they will keep me in their thoughts and prayers. I shudder to think of the times I have offered those platitudes when I didn't know what to say. I sure as hell didn't want to hear the horror stories of how they had some sort of illness and (hear this in your head with a southern accent) ... "I liked to die!" Which means they told everyone they were on their death bed but actually weren't. OR the sharing of information about their friend, cousin, co-worker who did die after their cancer came back three or four times. I knew what to expect from other women after hearing to all the horror stories when I was pregnant. I've never understood why any woman would relay gruesome tales to another woman who was going through her own journey. Knowing they had no understanding (unless they had been through it) of the emotional and mental upheaval that is still ongoing.

    Back to my sister-in-law, she was my rock. She asked the details of the pathology report and said, you're going to get through this ... this is what's going to happen ... these procedures may sound scary but it's not really bad and you won't feel a thing (giving me the step-by-step details of the procedure itself), what to expect the day of surgery and recovery. She was on the phone with me everyday (she lives 2 1/2 hours away) and constantly asked "what did the doctor say" "Be sure and ask ... " NEVER did she act like I was to be pitied.

    My other rock is my husband. We're both retired. He cooked, straightened up (won't say he cleaned), did laundry, drove me to every appointment and tried to stay out from under my feet. Bless his heart.

    So here's me ... grateful I never had to fight for my life, hating that people wanted to call me a warrior, me refusing to walk in fund raisers and refusing to wear pink. My radiation treatment center actually gave me a Congratulations you Completed Radiation award that looked like a Kindergarten graduation certificate. I was stumped by that. What do you do with it? Frame it and hang it on the wall? I looked at the lady who gave it to me with a What the Hell look. I believe I forgot my manners and did not say thank you. When I got home I got great satisfaction from running the certificate through my shredder.

    My cancer was never life threatening but every time I look in the mirror I wonder if I will ever return to the days when mammograms, tests and blood work don't scare the hell out of me. My view of doctors and health care professionals has changed. Being exposed, examined, poked and prodded like a slab of meat with no recognition of my humanity has left me with weeks of anxiety before each new appointment. This isn't a pity party but an honest recognition of how this shit has effected my life and it makes me angry. The cancer may be gone but we are still living with the emotional/mental challenges.

    I find myself remembering the movie The Help when the maid is talking to the little girl. So when I look in the mirror, I focus on looking at my face and not my chest and say ... you are smart, you are kind, you are important. Thanks for letting me rant.


  • grandmaadams
    grandmaadams Member Posts: 39
    edited August 2021
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    Wow ... I just found this thread. So much of this hits home. My BC was diagnosed May 2018. I was told by my doctor that I was LUCKY I got a type of cancer that was treatable (lumpectomy and radiation) and I would be fine ???? Lord knows I have lost friends to cancer, a dear friend who struggled for four years, but I can't wrap my head around anything having to do with cancer as LUCKY.

    My diagnosis was in 2018. I reached out to a sister-in-law who was a nurse and had been through bc herself along with several female members of her family. She was the rock I needed. The last thing I wanted was for someone to look at me as though I was to be pitied and get that voice change that sounds like they're talking to someone who is mentally challenged and tell me God has a plan and they will keep me in their thoughts and prayers. I shudder to think of the times I have offered those platitudes when I didn't know what to say. I sure as hell didn't want to hear the horror stories of how they had some sort of illness and (hear this in your head with a southern accent) ... "I liked to die!" Which means they told everyone they were on their death bed but actually weren't. OR the sharing of information about their friend, cousin, co-worker who did die after their cancer came back three or four times. I knew what to expect from other women after hearing all the horror stories while I was pregnant. I've never understood why any woman would relay gruesome tales to another woman who was going through her own journey. Knowing they had no understanding (unless they had been through it) of the emotional and mental upheaval that is still ongoing.

    Back to my sister-in-law, she was my rock. She asked the details of the pathology report and said, you're going to get through this ... this is what's going to happen ... these procedures may sound scary but it's not really bad and you won't feel a thing (giving me the step-by-step details of the procedure itself), what to expect the day of surgery and recovery. She was on the phone with me everyday (she lives 2 1/2 hours away) and constantly asked "what did the doctor say" "Be sure and ask ... " NEVER did she act like I was to be pitied.

    My other rock is my husband. We're both retired. He cooked, straightened up (won't say he cleaned), did laundry, drove me to every appointment and tried to stay out from under my feet. Bless his heart.

    So here's me ... grateful I never had to fight for my life, hating that people wanted to call me a warrior, me refusing to walk in fund raisers, refusing to wear pink and never once bought anything with a pink ribbon on it. My radiation treatment center actually gave me a Congratulations you Completed Radiation award that looked like a Kindergarten graduation certificate. I was stumped by that. What do you do with it? Frame it and hang it on the wall? I looked at the lady who gave it to me with a What the Hell look. I believe I forgot my manners and did not say thank you. When I got home I got great satisfaction from running it through my shredder.

    My cancer was never life threatening but every time I look in the mirror I wonder if I will ever return to the days when mammograms, tests and blood work don't scare the hell out of me. My view of doctors and health care professionals has changed. Being exposed, examined, poked and prodded like a slab of meat with no recognition of my humanity has left me with weeks of anxiety before each new appointment. This isn't a pity party but an honest recognition of how this shit has effected my life and it makes me angry. The cancer may be gone but we are still living with the emotional/mental challenges.

    I find myself remembering the movie The Help when the maid is talking to the little girl. So when I look in the mirror, I focus on looking at my face and not my chest and say ... you are smart, you are kind, you are important. Thanks for letting me rant.


  • betrayal
    betrayal Member Posts: 2,383
    edited August 2021
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    grandmaadams: Thank you for the laugh about the radiation completion certificate. It is nice to know that someone else shared my sentiments about this "reward" for probably the most traumatic part of my treatment. I did not ring the bell either concerned that it would trigger a flashback of this experience every time I heard a bell ring. I was not appreciative of the certificate either and wondered who thought this would be such an honor to have this worthless piece of paper. The only thing missing was a gold star for each of the 33 barbaric treatments to which I was subjected. Glad no one thought of that as part of the certificate. The physical scars I bear from this treatment are minor compared to the mental scars I bear from the surgical results, the radiation damage (fibrosis) including truncal lymphedema (only 1 lymph node removed), the humility of radiation, etc. I can identify with your feelings since I, too, share many of them. You were lucky to have the support of your SIL.

  • alicebastable
    alicebastable Member Posts: 1,946
    edited August 2021
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    grandmaadams, are you sure you're not me? I could have written every word except for the sister-in-law part. You're lucky to have her. Oh, and the radiation center I used - no certificate, just a nice, sane, "Bet you're glad you're done with that!" from one of the technicians.

  • rah2464
    rah2464 Member Posts: 1,192
    edited August 2021
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    Grandmaadams love that paper shredder. I never had radiation but I have a dear friend who did and I never understood that certificate. Bizarre.

  • dutchiegirl
    dutchiegirl Member Posts: 80
    edited August 2021
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    exbrnxgirl, I hate that you had to go through that with your coworker. It's not a breast thing, it's a cancer thing! It just happened to have landed in my breast. Geez, I don't know you didn't end up punching her. Lol.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2021
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    OMG... a certificate for completing radiation? That just floors me. Who would EVER think that was a good idea? Reminds me of the participation ribbons that we used to get at school. Hey... you have cancer... thanks for showing up... gob smacked...

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    grandmaadams, I think breast cancer is always life-threatening. Even DCIS in very rare cases goes to Stage IV (with likely an undiagnosed IDC in between but still...)

    I'm starting to get more ambivalent about the certificates, and furk, even the damned bell which I hate..... because I think we need to mark milestones. We do crave recognition that we went through something, dammit. Maybe this feeling won't last but today, right now I'm sort of seeing it in a different light.

  • wallycat
    wallycat Member Posts: 1,349
    edited August 2021
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    "you are kind, you are smart, and you are important..."
    I wept hearing that line on The Help. Committed it to memory. I need to draw on that more often.



  • elderberry
    elderberry Member Posts: 1,067
    edited August 2021
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    A certificate? Ringing the bell? Maybe because I was never a joiner I never got ribbons and certificates for my participation - be it member, winner, loser, just showing up. Now I am in a club that no none wants to be in. Should we get some little disk for "One Year" Two Years", the kind AA hands out for each year we make it? "Hi, my name is _________ and I have cancer" "Hi, ______" I only know that drill because of TV

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2021
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    Elderberry, you made me laugh at a memory with your post. I went on a bucket list cruise in 2018 - first cruise experience. There was an item on the daily schedule, Friends of Dr. Bill, that had me completely puzzled. Who is this Dr. Bill? Wow, why is he so popular? LOL. Apparently I am a bit sheltered. Had zero notion that this was code for an AA meeting.

    Funny, the organization I work with gives out pins based on how long we have worked there….

    Edited to fix a bizarre autocorrect issue.

  • elderberry
    elderberry Member Posts: 1,067
    edited August 2021
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    Sadie: I had no idea. I too would have wondered who he was. My employer gave out pins, can't recall completely now but I think it was for every 10 years to those who managed to not have run away screaming. Do you work for public health by any chance?

  • minustwo
    minustwo Member Posts: 13,198
    edited August 2021
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    FANTASTIC list Dutchie, This is a great thread. Laughed about the 33 stars I didn't get on my rads certificate.

    But yeah Moth - I do like to know when I've hit another milestone - which is in my case another year w/o another recurrence. Maybe we should consider treating ourselves to some special thing we don't usually do. But I wouldn't want a party. Just me eating a whole chocolate cake all by myself.

  • grandmaadams
    grandmaadams Member Posts: 39
    edited August 2021
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    Betrayal ... Gold stars! Thank god no one thought of that one. I'm with you on being triggered by ringing bells. For me it was a conscious decision not to ring it. My mother-in-law collects bells. Every trip someone takes she gets a souvenir. The last thing I need is to have a melt down every time the grandkids decide to play jingle bell parade. I feel with you, hoping our emotional/mental scars will heal with time.

    Moth ... I agree with you. In my case, every doctor told me my cancer was highly treatable and I had nothing to worry about. Again they were talking physical, no one addressed mental/emotional. My sister-in-law's treatment center had a large clear glass vase with marbles. She was told to take a marble of her choosing from a small bowl and put it into the large vase with the other marbles. It was supposed to be symbolic of all the women that had gone through and completed treatment, to show there were many like her and she wasn't alone. I like that idea much better than ringing bells especially after I read an article from an oncology nurse. She felt so badly for the women who had to sit in the treatment room and listen to that bell ringing knowing they would probably never have the chance to ring it. The excitement of those ringing the bell was terribly difficult for some.

    Gold stars, participation awards, buckets lists, sane technicians ... I have been snickering.

    All join in ... Second verse, same as the first, a little bit louder, a little more versed ... we are smart, we are kind, we are important ... and most of all ... we are MORE.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2021
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    Well, I'd take the pins if they were like the ones my dad's company gave him -- they had rubies and diamonds in them! The gems have been taken out and used to make real jewelry for his granddaughters to remember him by.

    I think moth has a good point about being able to mark our accomplishments and acknowledge what we have endured. We need to find ways that are meaningful to us, ways that are not infantilizing or traumatizing.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2021
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    Not public health but the public service Eldeberry. 😉

    And here’s to doing lots of things we enjoy to mark our milestones. I am thinking ahead to my next milestone birthday in April 2022. It will be my 60th and I intend to celebrate in style. Think champagne. Lots of it! (I know I have posted this on one thread but I had a pharmacist at the Cancer Agency say to me when she was going through all the side effects of one of my treatments … “it’s okay to drink alcohol but… there is evidence that alcohol consumption causes breast cancer.” Seriously? I’m stage IV? My response? “Well, that ship has sailed…”)

    We are smart, we are kind, we are important and… time to take care of number one! 😁

    BTW, like the marbles. Something a tad more thoughtful than stickers, certificates or bells!

  • nopink2019
    nopink2019 Member Posts: 384
    edited August 2021
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    I feel like I'm celebrating when I get to experience summer changing to winter then winter to summer. It is when I acknowledge that I will be around for that next season and can justify in my mind that I need a couple of new outfits.

  • alicebastable
    alicebastable Member Posts: 1,946
    edited August 2021
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    I marked my cancer milestones with desserts, too! My favorite thing was the pack of lottery tickets my husband bought for me, a dollar ticket to scratch after every radiation session and a few bigger ones at the end. It was little but it gave me something to anticipate when the Groundhog Day repetitive dreariness got to me. I was kind of worn out because I'd had to squeeze in a total nephrectomy between the re-excision and radiation and my body was not really ready to get stretched out like on a torture rack for rads. I also went to my favorite local parks after most sessions because it was fall and we had the most beautiful colors that year. I took so many pictures, and sometimes when I think about what a crap year 2018 was for me (I'd also lost my mother and had to get all my top teeth removed; when I got told about the two cancers my reaction was more or less, "Oh, yeah?"), I'll look at the pictures I took all through that year to remember the beauty of it to balance it out in my mind. Those pictures are my certificates.

  • minustwo
    minustwo Member Posts: 13,198
    edited August 2021
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    OMG Alice - what an overload. But yes - parks & getting out into nature.

  • grandmaadams
    grandmaadams Member Posts: 39
    edited August 2021
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    My mom was given pins for years of service, very small though. She took them and had posts put on the back to make pierced earrings. I have them now. I smile when I look at them because she never got around to getting her ears pierced.

    Right now I'm still in the five year follow-up, every six months I have to expose my breasts for either a mammogram or a breast MRI and an exam by my oncologist so I'm trying to avoid thinking about anniversaries.

    My husband has decided that the best therapy for both of us is to leave town often. We are both retired and bought a small travel trailer several years ago. We love nicely wooded federal or state campgrounds preferably with no internet or cell phone service. We're from the mountains of NC but this past May I fell in love with Michigan's Upper Peninsula. If anyone is from that area, I've never met friendlier strangers in my life. I find my peace in the woods. John Muir was an early advocate for the preservation of wilderness and often called Father of the National Parks. He was quoted as saying "And into the forest I go to lose my mind and find my soul". In the 1980s, Japan studied the medicinal affect of the forest. They call it Shinrin Yoku or "forest bathing". Googled it, you may want to give it a try.

    We are smart, we are kind, we are important ... we are worth taking care of and putting ourselves first.


  • alicebastable
    alicebastable Member Posts: 1,946
    edited August 2021
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    grandmaadams, my husband and I have vacationed in Michigan several times. Porcupine Mountain State Wilderness Park in the U.P. is incredible, more like a National Park. But our favorites are in the mitten: Ludington State Park just outside the town of Ludington, right on Lake Michigan with dunes and a lighthouse on one side or woods and wildlife if you take the other road. It has one of the nicest, woodsiest campgrounds I've ever seen. The other favorite is Hartwick Pines State Park, in the middle of the mitten about 2/3 of the way up. It was an old logging camp and is filled with some of the tallest and oldest trees in the Midwest. It's breathtaking.

    A friend lives in the U.P., and she's frustrated that there are so many anti-mask and anti-vax people there. They may be friendly, but they are not your friend.

  • divinemrsm
    divinemrsm Member Posts: 6,207
    edited August 2021
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    The collective wisdom on this thread is astounding. You women rock. I got a chuckle out of "oops, forgot about the cancer, better slip my jool-ree back on!" On the serious side, "It's not a breast thing, it's a cancer thing." should really be October's mantra.

    Exbrnxgrl, I am proud of you for speaking up to your coworker: "I have stage IV breast cancer. This was not a happy, voluntary operation and this is not what you want to do when you have a cosmetic concern. I have cancer, the kind that results in death. How dare you think that the problem of your big boobs in any way equates to a mastectomy for breast cancer! For G-D's sake, get a breast reduction but don't imagine for even a second that your situation and a mastectomy for breast cancer are even remotely related."

    I pasted your words here because they are so perfectly stated. I also like your "I may have raised my voice" comment; I hope you did!

    Was this coworker aware that you'd had a mastectomy? I was wondering if her comments were directly aimed at you. If so, it's not just incredibly insensitive but was also very passive aggressive of her. She was trivializing what you'd gone through, being flippant about breast surgery. She made it about superficial appearance and not a devastating health diagnosis.

    After I was dx with mbc, within a couple years, my 49 yr old brother had emergency triple bypass surgery and another brother had surgery to repair two 100% blocked carotid arteries (exceedingly rare to survive). So then at family gatherings, one of our sisters started to quip, "Gee, I keep telling my doctor I need to have some kind of health crisis so I can get time off work!" She was always making a joke of it and frankly, I think she was a bit jealous we got attention for our troubles, as if we revelled in attention of that kind! And it was like she had some some passive aggressive competition going on. I never did speak up because in my family, they get nasty if you do, and I always take the polite road to avoid conflict as I've had too much of it with them in the past. But eventually, this sister had a bout with colon cancer. When I learned of her dx, it felt like two arrows being shot in my heart, and then being hit with five more arrows to the heart. It devastated me. She had surgery and chemo and is now cancer free. But no more quips about wanting health problems.


  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2021
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    DivineMrsM - I’m happy to hear your sister is now cancer free! What is it with family/friends who make comments like that “Gee, I keep telling my doctor I need to have some sort of health crisis so I can get time off of work.” I wouldn’t trade my BC with anyone who doesn’t have it; I wouldn’t wish it upon anyone. I recently had a very close relative text me “a lot of other people get cancer and they live.” I cried uncontrollably in disbelief, I was so hurt. Who says something like that?! Especially coming from her. Never in my life would I thought that this person could/would say something like that. It was so rude and mean, as though my recurrence was a cold that I could take care with some Vicks and it would be gone. I had to swallow it and just walk away from the relationship because of who she is to me, I couldn’t say what I wanted to say, which was “eff you!” I’m always in trouble with my family and I have a huge family. it’s unfortunate and sad, but I’ve walked away from most, including my siblings. The negativity and poor attitudes, the woah-is-me mentality and the selfishness on their behalves is min-boggling. It finally took me to a breaking point; I need to take of me. I’m doing my best everyday to stay positive and all they were doing was bringing me down. So I decided to eliminate all the negativity from my life. I miss them at times, but right now my focus needs to be on putting my all to try and fight this beast and destroy her.

    Grandmadaams- I leave town as often as I can. I live in WI and northern WI and the U.P. are my favorite places to

  • dutchiegirl
    dutchiegirl Member Posts: 80
    edited August 2021
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    MinusTwo, my MO said that, once those with our subtype (HR Meg., Her2+) pass five years without a recurrence, our rate drops to almost zero. Not sure if you’ve heard the same thing. And I’m sure there are anomalies as well but I’m jonesing for that 5 year mark!

  • divinemrsm
    divinemrsm Member Posts: 6,207
    edited August 2021
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    grandmaddams, your dh's therapy to leave town often is quite fabulous! Dh and I took a wonderfully memorable bus tour to Mackinaw City and Mackinac Island on Lake Huron a couple years ago. We drove across the Mackinac Bridge to the U.P. Straits State Park. All my life I've been so aware of the rivalry between the Ohio State and Michigan football teams, I almost felt guilty loving the immense beauty of the state of Michigan!

    I've never been to NC and not sure if you're in the Smoky Mountains area, but I've rode thru Skyline Drive atop the Blue Ridge Mountains through Shenandoah National Park in Virginia, and hands down, find it to be the most soul-inspiring scenery of all in the United States.

  • elderberry
    elderberry Member Posts: 1,067
    edited August 2021
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    To All: should we change all that "survivor" "thriver" codswhallop to "Endurer" (is that a word)?

    The marble idea is pretty good. There is less rah rah rah.

    I have an acquaintance who is an energy vampire. I have dropped contact with her. My life is too short to be around people who are negative and suck the life out of you.

    Thinking I should get a pink T-shirt with "I HATE PINK I HATE MBC" on it. I really do hate pink, even as a little girl.

    I want to feel safe travelling again. Right now. Nope. No planes, trains or automobiles to some other place.

    nopink: When I got my DX it was early spring, everything was in bud. I was overwhelmed with grief. Would I ever see another Spring? Each season is now a true celebration of being alive.

  • grandmaadams
    grandmaadams Member Posts: 39
    edited August 2021
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    imageElderberry ... We don't like public transportation either. When we travel we pull our own living space with us and stay is spacious state and federal campgrounds.

    DivineMrsM ... We're just east of The Great Smokey Mountains. We live in the Swannanoa Valley surrounded by the Blue Ridge Mountains. They're both part of the Appalachian Mountains. The picture was taken in our driveway getting ready to head out.

    Alice ... looks like we need to go again and check out Hartwick Pines State Park.

    I have no idea why or how that picture posted so large. It's not near that big in my phone.



  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2021
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    My my, I thought that pretty photo was of the campground, but read that it is "just" your driveway!

  • grandmaadams
    grandmaadams Member Posts: 39
    edited August 2021
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    Energy vampire. I like that term. I posted earlier about my sister in law that has been my rock. She called today just to check in and chat. I laughed because she was stuck in traffic which is when she usually calls

    Unfortunately I have a sister who is not so thoughtful. I reached out to her when I was diagnosed because I thought she should know, family history and all that. Her response to me was, and I quote, “I’m sorry for your diagnosis. Breast cancer treatment has had great advances so be optimistic. You have a good husband and great kids who will be there for you” That was May 2018 and the last time I have ever heard anything from her. Not even a get well card. Closing the door should be a great relief but it’s not.

    Anyone else have rocks in their life? Being strong is not getting easier


  • elderberry
    elderberry Member Posts: 1,067
    edited August 2021
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    grandmadaams: oh that is so sad and awful about your sister. Older or younger than you? Did you have much of a relationship before your DX? You can choose your friends and you soon get to know who they are but you can't choose family. I guess missing from the quote was :......kids who will be there for you because I won't" Lost for words as usual when I hear this kind of thing. I am happy for you that you SIL is there for you. We are there too --- if that helps!