Light from around the world for LongTermSurvivor/Stephanie
Comments
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I live in a little country town in the Deep South. My husband and I have lived here for about ten years. During that time, my health has got much worse, then much better (from its worst). For the first two of the last eight years, except for bathroom use and Doctor appointments, I stayed in bed with my feet hung up in improvised traction. We have a special needs kitty who came to us at four days old. He and his littermates were the last rescue animals we took in.
I do not get out much at all -- just occasional brief outings in the local area. Mostly I am down with my feet up. I am always very tired, and naps often take me. A little more energy comes and then goes, fairly predictably, with my shot cycles to manage (another) illness. I read on BCO and a few other websites. Sometimes -- when I have trouble remembering my way through sentences -- reading goes only very slowly. I do some cooking sometimes -- about once a week. Sometimes I go along with my husband to shop for groceries. Sometimes I go along with him to yard sales to look for goods that would be useful to the Animal Hospital. Any little productive thing feels like achievement.
Some more here__
https://community.breastcancer.org/forum/64/topics/698235?page=23#post_4811824
Near the back margin of our little backyard are some big red cedar trees. They are home to many birds -- including hummingbirds and Eastern Bluebirds -- and some squirrels. The birdies sing and chatter and love to use their birdbath at the back end of the driveway. The community cat passes by sometimes, and he takes drinks from the birdbath. Even though we have not had a cold (weather) snap so far this Fall, the persimmons have been ripening over the last few weeks, and the birds have been taking great delight in eating them. Early in the mornings, and later before the dusks, mommy rabbits often graze in our backyard.
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From June. Mama possum with her babies walking past the west side of our house.
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As a new Stage IV person, I can definitely see why we would want to keep some of the Stage IV threads separate as deciding on treatment, or not to continue treatment are hard enough to make for ourselves. I don't believe any early stager would honestly go out of their way to say or do anything to make us uncomfortable, however when dealing with treatment as a way to extend but not cure, they idea of being in treatment forever is so foreign. I do think there is value in a Stage IV person offering advice to early stage topics when it comes to what to expect with certain treatments etc since we would have a lot of experience to share, possible ways to deal with side effects etc. I tend to think certain topics don't mean much as much to me now that my condition has changed a lot
Another way I see value is when early stagers can see Stage IV people in all facets or able to live life despite the disease and to see some Stage IV beating the statistics and going beyond 5 years. I found that extremely helpful to see as an early stagers. I am just glad topics are not completely blocked off and early stage can read the Stage IV threads. It helped me understand some of what to expect with my brain met and treatment. I spent a great deal of time on the brain mets threads prior to my DX of the brain met since that was what I ultimately feared the most about recurrence or metastasis.
Stephanie, while you don't need my admiration, you still have it with the open embrace you take on your experiences. I am not nearly there yet in my situation. I quite honestly believe I have PTSD, made worse by the whole brain radiation and the fears of what will happen in the future. (dementia etc). I am getting better with it but it is very hard.
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Hi Stephanie:
I think as an early stager, I agree very much that Stage IV folks have a lot to contribute. And I think it is good that we can read Stage IV forums; it was the only place I could recognize what turned out to be hand-foot syndrome, which I got and is extremely rare on Taxol-Herceptin--literally 2 case reports exist. I think the advice to not comment or be "on" those forums as a member is perfectly sensible and if I were that stage, I would want only Stage IV folks to be active, too. It is also very helpful when Stage IV (and other long term forum members) comment on things like the Femara or Herceptin forums, because they have insights we don't have and can help our knowledge grow more quickly. I also think that "knowing" or "seeing" Stage IVs living their lives, loving, giving, etc., and commenting on topics they are familiar with, etc. can help early stagers handle things better, with positivity, instead of dwelling on the negatives.
I took this photo a couple of years ago, in November, at Hermosa Beach. It was cold for Los Angeles (perhaps 55F) and had rained early in the day, so few decided on a beach trip that day. The beach was completely empty, save for one person who walked by after I'd been there for 15 minutes. It was so beautiful and once again, like in Scotland, I felt connected. I took off my shoes and let the cold ocean sweep over me. It was wonderful. As I stood there, this bird came by and landed. Somehow, I captured this picture. I share it to you with love and peace, beauty and grace, all of which you are to us.
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Stephanie, I thought you'd enjoy this, it's near St. Cloud, Minnesota where one of my friends lives & she took us to see it when we were there last summer. Here is part of an article from a paper explaining it:
"For more than two years, curious drivers in Stearns County have been pulling over to check out something that looks surreal: a dream-like sculpture made entirely of sticks.
Kids love to run through it and photographers can't get enough of it, but the so-called Stick House near St. John's University is nearing its end.
It consists of five small chapel-like structures clustered together along County Road 159, and it has stood strong through the blasts of summer storms and snowy winters since September 2012.
It was the vision of Patrick Dougherty, a sculptor who's done similar works around the world.
Tom Kroll is the Outdoor Director of the St. John's Abbey Arboretum, where the willow and ironwood branches were harvested.
He said Dougherty named this local sculpture "Lean On Me," because of the way the five sections rest on each other.
"They're meant to hold each other up," Kroll said, "but also symbolize this sense of community, that these little rooms and buildings, we're not all standing alone. We lean on each other and support each other."
It's also come to symbolize the circle of life. All the materials that sprang up in nearby fields are now starting to break down, and the entire sculpture will need to come down soon for safety reasons.
Melis helped line up nearly 300 volunteers to harvest the sticks and put them in place over a three-week period.
"It was hard work," she said. "People were really into it and that's why they kept coming back, but it was really physically exhausting for everyone."
In the two-and-a half years since, the Stick House has attracted thousands of visitors."
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A pretty snowy morning about 3 years ago looking east from our front porch - half the year, when there is fog, we are above it. Just so breathtaking to look out the window on these mornings.
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Stephanie, this bird is a chaffinch. Common throughout the British Isles and one of our most colourful common birds.
PS Obviously I have not been privy to the discussions but it is a fact that people with stage 4 have NOT stepped off planet earth, therefore they continue to be everyday people dealing with the human condition in all its beauty, tragedy and everything else in between.
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Here is what sunrise looked like this morning in central Oklahoma.
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Beautiful Photo Lucy!
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Hot air balloon spotted from our back garden. Not an everyday event.
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These photos are just gorgeous. You all live in magnificent places and I thank you for sharing your beauty with us. Checking up on you and hoping you are comfortable. Hugs.
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It's fall in Wisconsin, my favorite time of year. This is Wyalusing State Park in the Driftless Region.
I'm glad this thread is in the Acknowledging and Honoring our Community forum. I respect the stage IV threads and follow several but don't post, with rare exception for a supportive message to a friend. ♥
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One may ask, What is the driftless area? The Driftless Area or Paleozoic Plateau is a region in the American Midwest noted mainly for its deeply carved river valleys. While primarily in southwestern Wisconsin, it includes areas of southeastern Minnesota, northeastern Iowa and extreme northwestern Illinois.
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This was a gorgeous spring day here in Los Angeles I took from the balcony at my work.
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A gravel road near where I live. You can't see it in this picture, but in addition to the reds and oranges, there are some pale lilac-colored wildflowers that grow by the side of the road in the fall. Not sure what they are - maybe asters. The strong colors accented with the delicate one really please my eye.
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Hi Stephanie - thinking of you daily. Always pleased to see you posting in so many threads. You are amazing.
Cathy
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Good luck with your ongoing treatment Stephanie. This wallaby with her baby was outside my back door a week ago. Best wishes.
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These photos are from Tara's Palace Museum of Childhood that I visited today with my Mum. These are all from dolls house rooms. The curator's hand in one will give you an idea of the scale.
sited
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Some wire fairies from Greystones, County Wicklow, Ireland
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The Cliffs of Moher on a misty day
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Cloudy/foggy morning in Roseburg.
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Stephanie,
As promised, I thought of you while on my cruise. Many prayers were said for all but this flower is just for you. My partner and I had a great time. She said to send you her love. Here is a picture I took at the San Diego zoo.
Much love,
JJ
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Hello Stephanie, thinking of you.
Sunset at St. Catharine's Church, Spring Lake, NJ.
Sending light and love, Madelyn
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Yesterday was the anniversary of my friend's passing.
This is the friend I sang to and played flute for her several times while she was on hospice.
All that music reminded me of you and your Threshold Singers. I hope someone is singing for you this week.
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Trying to figure out where to cross-post the following at bco, to reach a cross-section of bco members. It would be as useful for the newly diagnosed as for those of us facing metastatic disease.
All love all the time, Stephanie
JustJean, I love hibiscus flowers - they don't thrive well in my region of N. California, but many of their relatives do. Love hearing that your partner and you are loving life and one another - your sister friend, Stephanie
xox
I posted this at another bco community and thought it might be helpful for those facing daunting diagnoses.
One topic that's near and dear to my heart is the usefulness of personalized support groups that care for the carers as well as caring for us cancer folk.
Back in pre-Internet 1996, my friends started a Share the Care group for my partner and me, having heard my end was near. That group continued for 10 years, gradually dissembling as my primary relationship broke up.
In 2012 there was more very ominous news and that group re-assembled (includes my ex-partner) with many new members using the same model and many online resources including lotsahelpinghands forms for managing caregiving tasks, calendars and participants' needs.
Also, mylifeline.org provides free blogs for folks with cancer that allow carers to keep in touch. Mylifeline is much better than carepages or caringbridge, if you are concerned about privacy, ownership of what is shared there and commercial-free space.
BCO and other online support groups like bcmets.org and smartpatients.com are also incredible sources of free, online support. smartpatients doesn't have a strong breast cancer community, but for cancer geeks who want to cross disease boundaries, it's an incredible resource.
And I'd be remiss not to mention my cancer home since dx with advanced breast cancer in 1992 - Commonweal's Cancer Help Program. Their outreach program includes similar programs and resources, but also Healing Circles communities that meet all over N. America.
Thank you for allowing me to share these resources.
Healing regards all, Stephanie
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Lovely to look at (but not recommended for breakfast) Autumn beauties from Wicklow
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This weeks weather and views before the big storm hit from our home in Roseburg, OR. We have alot of wind and rain at the moment and our hummingbirds are trying to take cover. I have an area they can get under cover and stay away from the weather.
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Blessings to you this morning, Stephanie.
Thank you for the recommendation on Mark Nepo's book, Inside the Miracle.
It is wonderful so far. I am chewing on it slowly. :-)
Louis
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Our dear Stephanie is quite ill right now. Please send your kind thoughts her way.
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thank you Stephanie. I am grateful for you and all that you have provided for those of us at BCO.0
