Life does not end with a stage IV diagnosis (really!)
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The view from my seat last night, it was a lovely clear day here in San Francisco, and the moon followed me home!
Got out in the yard today and had a nice interaction with my neighbor - I was pruning back a lovely magnolia small tree/large bush, and I couldn't reach the back, which is right up against his fence. Tried getting up on a ladder and kind of leaning into it, realized I was likely about to fall over. Rang his doorbell and asked if it would be okay for me to dash into his yard for a minute, but he offered to do it for me. Passed him the hedge clippers over the fence, he snipped snipped snipped, all done. Such a kindness!
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Great seats!
I love that opera- although sad , it is so beautiful. Haven't been back since the pandemic- May go again with a mask in a box seat.
Your neighbor sounds great!
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My parents were big opera buffs and they had season tickets for many years. On occasion my mother had other plans on those opera days, and my father would take me instead. One of the first opera's I saw with him was Madame Butterfly and I loved it! Yes, so, so sad, but beautiful! When I was a child my father would play opera records all the time, and I hated them. I just thought it was screeching in foreign languages that I couldn't understand, so couldn't follow the story. I thought I liked almost any kind of music other than opera, and then I went with him. The local opera had "supra titles" in English by then, so it was easy to follow the story. Being there in person and being able to follow the stories was a whole different experience, and I really came to like it very much. Years later, my parents still got those season tickets, and they got them for my daughters too, and I think it was one of the nicest experiences my parents and kids all had together for a few years there.
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I've been to the opera several times. Once was in Honolulu with my mom. She took me to La Boheme. Then my husband was offered 4 tickets to opening night of the San Diego Opera's performance of The Flying Dutchman. The seats were given to him by the president of the bank where he worked. It was black tie, super fancy seats and during the intermissions, we got to go out to a special reception area where they served drinks and hors d'oeuvres. It was so much fun to dress up and sit in the "fancy" section.
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I love hearing the stories about everyone’s different opera experiences! Sf-cakes, it looks like you had fabulous seats for Madame Butterfly! I don’t know much about opera but if I’d had the opportunity of someone taking me, like threetree’s dad, and explained it to me, I know I’d have developed an appreciation for it.
I had a great time at the family picnic on Sunday. Dh and I were the last ones to leave, a first for us! Today he and I went to the pool for several hours and it was so relaxing, I came home and took a two hour nap!2 -
I was just reflecting on the fact that I am now 8 years from diagnosis, so I thought I'd hop on and post on this thread as it was like a lifeline when I thought life was over for me. I was so encouraged to see so many people doing well and that, in fact, life does not end. Well, of course, it does for everyone eventually, but I was hoping I'd get at least 5 years, and I'm still here at 8 years and going strong. For anyone just finding this thread, many of us are still here and still going. Just this year, I went on a 50 mile Boundary Waters canoe trip, I hiked over 60 miles in Big Bend National Park and Guadalupe Mountains, I went rock climbing 3 times a week, and I played a backyard concert with friends. I know it isn't always the case, and I know how fortunate I am, but I wanted to give some hope back in the same place that I found it.
Wishing you all a happy solstice and the chance to find light in the midst of darkness.7 -
Dghoff, nice to see you again as the fitness thread hasn’t been active for a while. Glad you’re enjoying the extra years 😃
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Nice to see you both!
Here’s wishing everyone a great holiday season! 🎊0 -
@dghoff , your words give me so much hope. Dx MBC end of Nov 23, mets to peritoneum, lung, bladder. I don't know if they are micromets or not, and I don't think I need to know. The tumor in the bladder was resectioned and biopsied at the same time and confirmed dx. I'm ILC er/pr+, grade high 1/low 2, and just started tx of Verzenio and Fulvestrant. I am active like you—run rivers (not as much as I used to), hike, yoga or fitness almost daily. My biggest fear was that my QOL would deteriorate; yoga and outdoor time are what have sustained me my entire life. Reading what you posted has really helped me, and I'm going to share it with my daughter (who I haven't told yet—waiting till after the holidays-her heart with break as her dad died from pancreatic cancer 7 years ago and she was crushed). Thank you, happy solstice!
Claire in AZ
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Claire - I think my yoga and my outdoor time is what is keeping me stable. I too, am sustained by those things, and I truly believe it is the time I spend in nature and teaching yoga that keeps my body and spirit strong. I have mets to liver, lungs, and bones, but my treatments have been tremendously successful, and the thing I try to remember is that I get to write my own story, not any statistics, or doctors opinions. I know how scary those first few months are, but there is much room for hope.
Illimae and exbrnxgrl- so nice to see you too! I just don't get on here very much as I guess I am too busy with life, but it's great to reconnect with you!2 -
It's brilliant to hear of all the things people are doing and being so active. I thought I was doing well with a part-time job and doing a bit of exercise😅.
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When I started this thread, almost 10 years ago, there were a few members who objected to it as they felt it was a misrepresentation of stage IV life. I was encouraged to remove the thread by those who felt that if it was known that there were stage IV patients who were doing relatively well, the “people” would think everyone at stage IV should be doing that well!
It is heartening to see that there are now many more of us doing well for longer periods of time and leading, mostly, normal lives. Trust me, this was quite rare when I was dx’ed in 2011.While I fully acknowledge that this is still not the case for the majority of stage IV patients and I am in no way discounting the pain and hardships they go through, it is a hopeful sign more people are living good lives at stage IV. Stage IV is not a monolith that affects everyone the same way and I’m glad that we now understand this and acknowledge it.
Thanks for reviving this thread and continuing support for ALL,stage IV patients, whether struggling or leading a more normal life.PS: I have yet to take my grade 1, single bone met and shove it up my a** as a member suggested at the time. However, if it turns out to be an effective treatment, please let us know! Yup, someone really posted that!
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I mean, if I knew it worked, yes, I'd put a bone met in my bum. Might be kind of scratchy, though... 🤔
This was the first thread I read almost exactly three years ago. It gave me a lot of hope when I desperately needed it, and I'm glad to see others here, living life. I've never been super physically active, I prefer strolling to hiking, but I've been strolling, visiting friends, reading great books, acquiring new beautiful paintings and sculptures for my home, attending the symphony and the opera, working for the first 2.5 years then deciding to stop so I have more time for the above. Life can still be lovely, despite the losses we've all experienced. I am grateful.
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I have been following this thread. After being told I was going to needed to get my affairs in order and being told I was end stage because of where it was located this page gave me hope. After a struggle emotionally in the beginning, ibrance and letrozole began to kill the cancer. I was supposed to have knee surgery last January but it was put on hold. I am having it January 8th 2024. If you had asked me last year after January 3, my cancer recurrence anniversary date, when I would have the surgery,I would have said never. I have continued to stay strong by going to the gym. Walking is very pain full after about 100 feet. I am looking forward to being able to walk and hike again in the nice weather and swim in the summer without pain. Last year I did not believe this would happen. I have read so many encouraging posts on this feed and other topics. All I can say is I am glad you started the topic @exbrnxgrl.
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New year Greetings from Sydney Australia
It gladdens my heart to read posts from the you wonder long timers now in my late sixties
So enjoy outdoors n travel .Its been hard to walk on xeloda so did not think I could do the walking required for travel...changed dosage and timing in october and was able to join sisters on trip of a lifetime to Egypt...we call our selves the 'dusties n crusties' and very apt as lots of sand n dry climate for trip off the nile boat between Luxor n Aswan. Favourite tomb was Nefatari. Now on Navelbine and able to walk so back to beach sand walking .
So joyful to feel water n sand and the small hike to beach
All the best
Bright in hope
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So happy to see you all here! Bright55, your pic is fabulous. I am very well traveled (ex-Peace Corps volunteer, ex-Pan Am flight attendant) but have never been to Egypt. I wouldn’t mind going but not feeling entirely safe about that part of the world right now😢. Travel has been the most enriching experience of my life.
Whatever we choose to do, enjoy! I’m slowing down a bit now but still sub 2-3 days a week and recently went to the very exotic 😉state of Florida to visit my oldest friend (we’ve known each other since high school). I’m off to the lovely Napa Valley tomorrow for 5 days. I pretend that my daughter’s house is an Air BnB 😂. I’m actually house/pet sitting while they’re out of town.
WISHING YOU ALL A HAPPY AND PEACEFUL NEW YEAR 🎊4 -
Wow. I didn’t know this thread was ten years old! Time flies! I’ve now been living with mbc for 13 years. Yes, I have frustrations with it. But I still have plenty of good times.
I’ve had a bit more troubled times this year, me and family members. However, my dh retired in the spring, and I was here to celebrate it with him! Numerous times I’d tell him, “I’m happy to be here for this!” Then we spent the summer going to the pool to stay cool and socialize with a great group of adults our age. I got very involved in a new hobby, taking photos of headstones at a local cemetery and posting them on Find A Grave, a virtual memorial website owned by Ancestry.com. Sadly, I had leg surgery in October and I’m not sure when I can resume the hobby, but I had fun being obsessed with it for months!I enjoy reading memoirs (“You Could Make This Place Beautiful” was my favorite this year), watching good tv (currently love “The Gilded Age” and “Only Murders in the Building”) and seeing movies (“Barbie” and “Oppenheimer” were terrific).
I started redoing a room in the house for me that was formerly used by my son and his friends. It’s the first time in 35 years that all design choices are based on what I want, not what others need.
bright55, love your photo! And the “dusties n crusties” name!
Brutersmom, I wish you all the very best with your upcoming knee surgery!
sfcakes, your comment about the met in bum cracked me up!
exbrnxgrl (Caryn), thank you for starting this thread so long ago! Enjoy your travels!
Yes, I have struggles where I bitch and moan and cry. I do my best to address these struggles and take care of them. But being aware of the limited time we have on earth, I also make room to savor the good times when I can. I was hospitalized for seven days in October, going through a lot of pain and difficulty. In the wee hours one night during that time, I could not sleep. I finally pulled my iPhone out and started listening to some of my favorite songs on my iTunes. I couldn’t believe how calming it was and how much it lifted my spirits. In the middle of all that trouble, I found a bright spot, and I have to say, I was proud of myself for doing so.*
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** Christmas 2023 **
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Great picture, Divine! Good for you for turning to your favorite to get through that hard night in the hospital. I'll have to remember that.
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I am very grateful that this thread is here. Being told that I was de novo stage iv with bone mets was confronting but I have accepted it and moved on - my life and interests continue. It is so good seeing how others manage and I value the various hints about how to deal with issues.
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Bright55, great photo! Such a cool background! I love your glasses, too.
Divine, also great photo! I swear you look younger than a photo you shared a couple of years back.
I took this photo for a post I did about MBC Awareness Day - other than the lipstick I put on, this is generally what I look like, pale like a vampire, lol!
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First of all may I say that we have some very beautiful women, inside and out, on bco and stage IV no less!
Camille, you look unchanged to me and we go back more than a decade (yay, us 😘) . Simply stunning!Sf-cakes, I don’t think I’ve seen a pic of you before. You have a fabulous smile and look great.
I have always disliked photos of myself but might, just might, scroll through my pics to find something semi acceptable to post.
So happy that this thread resonates with so many more than it did ten years ago 😊4 -
Caryn, I’m glad to see you’re still here. I’m coming up on 10 years metastatic. I’m blessed beyond belief. I’m hoping for many more years. Happy New Year!
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Caryn, thank you for starting this thread ! When I was dx as stage IV in 2019 , of course I was fearful that not only would I die soon, life was over as I had known it . This thread gave me a lot of hope. To see other stage IV people living and traveling despite this dx and the side effects of treatment really helped me and continues to help me ! I love seeing your photos and hearing about your adventures....to Egypt (wow !) and to the Symphony and Opera in SF , world class experiences ! Brutersmom - your workouts and stamina are amazing . Divine - you are beautiful in that photo and I'm sorry you were hospitalized but appreciate how listening to music helped lift your spirits. I have a sassy photo from 2020 (one year metastatic ) when we went on a trip to Mexico ...or my work head shot from 2023. I'll be 60 on April 1st in 2024 and I'm so happy to be 60 :)
Happy New Year's to you all , bring on 2024 !
Here is my recent work headshot....
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aprilgirl1. Thank you. Great picture. I would post a picture but unfortunately the only recent picture I have is one of me wearing a Flamingo blanket. LOL.
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celebrated my one year anniversary of my mbc diagnosis with a trip to Antarctica!
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Happy New Year 2024!!
I so love these wonderful photos of everyone! ♥️
AJ, what an impressive trip to take!
Isn’t it something that to look at any of these photos we’ve posted, no one would know the serious health issues we’re dealing with!
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I don't normally post photos of myself because I usually hate them, but here's one I don't hate. This is one of my husband and me in front of a sculpture he designed and had built. The panels are solid steel and it took a crane to lift it into place in this courtyard. The second picture is what early morning looks like on the other side of the house. It's called Santa Rosa Cove.
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