Life does not end with a stage IV diagnosis (really!)
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Hello Yvette and roro,
Thank you for your posts. One advantage of trying to take care of your family as normally as possible is that it helps you feel more normal. Of course, if you are physically unable to do so, please listen to your doctors advice. Being stage IV does not make everyone an automatic invalid. Although we are all different, many of us work and enjoy family and friends though we may have to make some modifications. I still teach full time (well, as best as I can now that schools are closed). However, please take your meds as prescribed but don’t be afraid to speak to your doctor if you are experiencing bad side effects. Take care and be sure to visit that address specific concerns you have regarding your type of bc and it’s treatments.
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Hi Yvette,
Each bit of cancer news we get takes us some time to process. For me it’s been good to try to stay busy, but with all the staying home with Covid I’m doing a lot less. Hopefully you’ll find the Ibrance and hormone blocker not too bad, and they’ll get to work on your bone mets. My biggest side effects have been dry skin and eyes, (and yes, female dryness too, sorry to say) and thinning hair. I believe those are from the hormone blocker. I get occasional lightheadedness and mild nausea if I don’t drink enough water.
I think you’ll find the side effects are very manageable and you’ll be able to do all or most of the things you’re used to doing with your kids. Some here are quite active and some are also working their regular jobs. (My energy fades in the afternoon but it’s not too often I actually need a nap.). Hopefully some others will chime in with their own experiences. Good luck to you! 😊
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Ladies,
I really hate to be the thread police but I started this thread to serve as inspiration and hope about how a great deal of normalcy can exist even when we are stage IV. I know we don’t always stay on topic but let’s try if we can. Thanks and take care!
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I'm currently feeling more positive than I have in quite some time. Numerous reasons for that and one is because it's spring. The sight of nature waking up after a dormant winter touches my heart such that I cannot describe. Seeing the flowering shrubs, trees and perennials begin to blossom lifts my spirit in endless ways. With the pandemic, I cannot visit some outdoor places I'd love to see this time of year, but I enjoy what I can elsewhere. My backyard is a quiet little spot which, over the years, I've filled with a variety of perennials and trees so something's always in bloom from early spring to late fall. A few current highlights:
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that looks like a beautiful Japanese maple Divine. What a lovely garden you have to lift the spirits and enjoy. Thanks for sharing
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glad to hear that, divine
Beautiful pictures
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Thank you for those lovely pics, divine.I love Japanese maples. They are very popular in my area. Enjoy your garden
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Lovely, Divine.
I understand how you feel. Hope springs! I am happy to see trees and flowers popping, squirrels pursuing each other around tree trunks and birds nesting.
Our pale irises are about to open. Our wonderful peonies should bloom soon. However, it's been raining for so long that the weeds may tower over them!
Tina
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I'm glad to hear you're feeling rejuvenated, Divine, and thanks for sharing your lovely garden. Spring is my favorite time of year, too, although at my house, we're still buried in 3 ft. of snow, so I really appreciate seeing photos of flowering plants, trees and green grass! We're having warm temps now though and I heard a hummingbird buzzing by this morning, so I'm getting out the feeder. I love when they return!
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Bliss,
Hummingirds in the snow? I didn't know!
Tina
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Hi Tina. Yeah, they come back quicker than the snow melts; pretty hardy! Sometimes they're back even when it's still cold and snowing, but luckily this year, it's blue sky and warm temps for them.
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How many of you have had to cancel trips this summer with all of the Covid stuff? I was supposed to be on my flight to Fiji today & then on to an Asia cruise. There is no way I want to be traveling now but its still a little bittersweet. Im enjoying seeing the pictures of your gardens & birds to do a little virtual "traveling"
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nbnotes, what a shame about your Fiji trip and cruise, but definitely not the time to be traveling. The only sort of "big" trip I was planning this summer was driving out to Vegas and Calif to see friends, but even that may be on hold now.
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Lovey garden pix Divine! Spring is so uplifting and the garden makes me feel less quarantined.
Enjoy those hummingbirds, Bliss! Colorado birds must be hardy :
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NBnotes,
I’m sorry that your trip has been put on hold but, hopefully, you can re-schedule.
On March 13, when we were told that schools would be closed until after spring break, I had already booked a cozy cabin at Lake Tahoe. I was looking forward to a quiet week in that beautiful area. That was all cancelled of course and we won’t be going back to school this year. As long as we all stay safe and healthy that’s all that counts but of course we all feel disappointment
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Yip... everything cancelled here too. Been “shielded “ which means not allowed out at al for 6 weeks now. Luckily I have a garden!
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Beautiful garden Divine. Spring is finally here in New Jersey. It makes everything more bearable even in the rain. I started to cut branches from a 50+ rhoderdendron that I rescued 40 years ago but cutting it back to almost nothing. It’s now 10 feet tall. I started from my deck and my husband thinks I’m nuts. But it had some fungus on it. I was determined to save it again. This made my day. I just love playing in the dirt. I planted lavender seeds with the hope I see them by September. My thyme and rosemary are growing after a very mild winter. I take such pleasure at these little miracles of spring
I cancelled a cruise to Normandy beach,trip I wanted to do for a very long time. Also cancelled was a trip to California to see my grandson and his parents(who I love so much too), Finally cancelled 2 weeks at a beach house with all my children and grands and my sister. Disappointing yes but I just want my family to be safe.
I hope all to enjoy the spring, the birds singing (even if they wake us at 5 a.m. ) and the love of family near & far
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Nice pics Divine. I bet those rose bushes are beautiful all summer long. I used to have several flower gardens at our old house in IL. I miss all the flowers in the spring. I haven't got into SW gardening yet.
Nbnotes, sorry about your trip being cancelled. Hopefully things will calm down and you can reschedule it soon.
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Having the hardest time wrapping my head around ‘how long can I live with brain Mets? Or when will the next one show? Because once it’s up there, it will only keep on spreading like fire. I feel so anxious/defeated. Maybe it’s the hair loss going on from radiation, or the anxiety from the being in quarantine for almost 2 months now, but my days feel heavier. I have been exercising daily, cardio, yoga, walking, biking. Anything to keep me feeling okay, but when nighttime comes, the dark thoughts just creep in. I had my first TDM1 treatment this week. I feel great, really. I just wish I could be at peace at least 5 minutes during the day. Thanks for reading. Xx0
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Roro11,
I wish I had answers or even personal experience with some of the issues you raise. This is a great thread and you are always welcome here but it’s probably not the best place to find folks with similar experiences. Have you checked out this brain mets thread? Take care.
https://community.breastcancer.org/forum/8/topics/777599?page=242#post_5548079
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Big huggs from over the pacific in Australia
Your fitness level is awesome..for me its a 31/2 km beach walk every second day
Lots of gardening and cooking n sew projects as I am retired
In the past I have been on anti anxiety meds when working so the benefit was very important to ability to manage..so can recommend commencing if you have not all ready.
Mindfullness apps for breathing and relaxation are wonderful...lots of families are even doing them with kids during this crisis
king parrots green femaleAll the best
Bright in hope
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They are beautiful parrots. Thanks for sharing a lovely pic x
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Bright, you certainly have some cool fauna down under. I would flip if a bird like that turned up on my patio!
My little ray of sunshine today was being able to pull up bags full of highly invasive garlic mustard from our yard and a swath of park behind our house. My back hurt, my feet were numb, but I went slowly and persisted. I'm glad I did.
We must value our small victories over cancer and quarantining!
Tina
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Feeling really happy to be alive. Grateful that I have lived to see another spring!
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Hi all, I've been around on the bone mets and verzenio threads for a bit but am new to this group. I think I found my way here looking for some hope. I had a rough start to the year with a stage 4 diagnoses in November of 2019 and a couple of emergent surgeries in December to stabilize my right hip and femur. I feel better now. I'm walking and the mets in my back don't really bother me a lot. Mostly I just feel like I've aged 20 years in the last two. My initial diagnoses was in 2018 so the stage 4 diagnoses at the end of 2019 was a shock because we all thought it was gone. I'm now wondering why I didn't advocate for a bone scan or something after I was done with all my initial treatments but I guess the rear-view mirror is always clearer in these cases. I do my best to try and live as normally as I can for as long as I can and on the good days I don't feel like someone with metastatic cancer. On the bad days I find myself praying that God will just let me outlive my parents and I will figure it out from there. My MO is positive. She keeps reminding me that people live normal, functional lives for years with this diagnoses. She says she can't promise 10 or 15 years but that it isn't unheard of either. I'm 42. It's my goal to make it to 62. I figure that would be a good run. What is your best advice for keeping a normal routine? I try to be positive but I also realize that there is an emotional continuum that goes with this diagnoses so I'm just trying to roll with the rough days as well as I can. Thanks.
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emac, it is possible to keep the mets at bay for extended time. I'm over nine years now since diagnosis. At times it's been a roller coaster ride of up and down, but I've had nice stretches of stability with the disease which has given me time to live a normal, functioning life. So what your oncologist says is true.
I always phrase my situation as living with metastatic breast cancer, not dying from it. I've had some of the best times of my life since diagnosis. A few ways I cope: I take a daily, mild antianxiety medicine which truly helps.
When first diagnosed, I spent time exploring my feelings. I had to really ask myself what I liked, what I wanted, because I realized I was filling my time doing what everyone else wanted. I started eliminating things I felt obligated to do and began filling my life with more stuff I did want to do.
It was also important to give myself things to look forward to. It's more challenging in a pandemic, but now dh and I often plan a weekly long drive maybe to a state park and take a picnic lunch. Or find a nice walking trail. We're getting an above ground pool this summer because we'll be unable to go to the public pool which has always been a favorite activity. So I try to learn ways to work around the pandemic limitations.
Retail therapy is fun, too, even if it's online. I occasionally binge watch something good on Netflix or Hulu and can escape in a great book, too.
And of course, take this one day at a time. I learned to live more in the here and now and not project myself too far in the future. You have my very best wishes.
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Thank you Divine! An above ground pool sounds amazing! Hooray for 9 years too! I am still so new to this that I keep having to remind myself that I could have a lot of years of living left to do. It will be important that I figure out how to prioritize them. I am planning to travel to AZ more to see extended family for sure.
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divine, you inspire me
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ladies you are all so inspiring. I’m trying to find the light after being staged at a 4 a year and a half down the road. I’m definitely going to add you to my favorites list just so I can find a quiet place sometimes. I go in for my first planning consult on Wednesday. I’m scared but I want to get it in the rearview mirror. Nervous about chemo mostly. Didn’t do very well with it the first time around. Surgery and radiation was a piece a cake in comparison
I too love the spring time. Looking out my window is so inspiring. Even more fun is watching my cat look outmy window. Endless amusement. Well these little things are the best sometimes
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WelcomeM-and-M37,
I hope you find some hope and inspiration here. None of us are denying the seriousness of an MBC diagnosis or the effects it has on your life but there is a surprising amount of normalcy that many (not all) of us experience. It’s nice to learn to relish those moments and not put our feet in the grave prematurely. Take good care
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