Life does not end with a stage IV diagnosis (really!)
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Artist, it's not fair that your evening out was marred by the nosy, ignorant, rude questions of that woman. Times when we are happily not thinking of cancer are precious. I made my cancer center stop sending the automated appointment reminder phone calls because they always seemed to come when I was enjoying some "non-cancer" time. You know, a possible answer to this person's first question would have been, "How odd, no, my daughter is fine, thank you." You don't have to be so darn honest and forthcoming. With your move and fresh start -- have you considered not telling anyone in your new town? You have experienced living with having your health status public knowledge. You might try it the other way now and see if that works better for you. There are pros and cons to either decision, but you have the perfect opportunity with the move. If you choose to keep it private, I think the number of people who do know has to be really small, because everyone thinks they can tell just one or two people and when they do, it is public knowledge again.
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Patti – I'm sorry to hear that you have had progression, and of your recent troubles. Pedialyte…thanks for that tip for my back pocket! I applaud you for informing your hospice nurse of your choice to die with dignity in a calm and assertive way. It sounds like you will be receiving excellent care from them.
Caryn – what an absolute doll! Who wouldn't want Miles as their date?
Artist – I'm so sorry that your "friend" ruined your evening. I usually give people a pass for not knowing what to say or saying the wrong thing, but as an RN she should have been more sensitive and understanding. A simple "I'm so sorry to hear that" would have sufficed. And trying to figure out what you "did" (or "didn't do") so she could make herself feel safe was way out of line. I too am one of those whose cancer was discovered at Stage IV only a few months after a mammogram. (Divine – I'll have to look into that group. I may need it in the future)
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She is my granddaughter ,my first grandchild.
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thank you so much for your positive feedbac
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than you
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Ditto what Artist and Divine said about the small town gossip, and Divine's comments about Patti's perfect comments to the hospice nurse. I'm learning so much from you all. Patti, also glad the Pedialyte worked so well for you.
Beautiful granddaughter, MadelineG. All of the babies are so adorable and such good therapy! I so miss having one around.
I'm in Squaw Creek for a week for work. Left cold and snowy Colorado for cold and snowy California! Yesterday was warmer and pretty nice, but today it's raining!
Hugs and love to all!
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Satti, I am glad you set your boundaries and expectations for your care right out there from the start. You will have such a better relationship with your nurse now. In the beginning of my Dx I had a small confrontation with my Onc because she contradicted me, not too nicely, and I later proved her incorrect. After I told her how that made me feel we had a much better time. I'm so glad you are feeling much better today. Going from miserably sick to feeling fairly well is like Nirvana!
Divine, You are so correct about many people just wanting the "scoop" so they can report to whoever about MY situation. I can usually tell who they are and it just gets under my skin. So I have learned to put out my "bio" pretty sparingly. It's a fine line to figure out who is truly inquiring from concern and would not want to put those people off. But that nurse the other night was just so loud and in my face, it was super awkward, and it took me a moment to realize she was "looped". We haven't talked to them for several years so why she thought it was any of her business anyway is beyond me. After that I extracted myself as quickly as possible, but still wish I had a quicker comeback. My DH is the king of quick and wish I had his finesse!
Shetland, That's a big YES! I am not telling anyone in my new "hood" about my health. It is in a bigger city but still a small community neighborhood with a clubhouse, pool, sauna ect. You are so right, it starts with a few and balloons into everyone knowing so quickly! I yearn for anonymity! Just a plain Jane regular ordinary citizen. The only reason I filled in the nurse was because if I lied or denied she would find out eventually anyway since everyone knows everyone. So I prefer to tell people the "true" version.
Shutter, You have a good point. I think people try to figure out reasons so they can feel safer too.
Bjs, Are you still in Squaw Creek tonight? Is it wet and wild here in Tahoe or WHAT? High wind, pouring rain, flooded roads, mudslides...Sheesh. Honestly though it gives me hope for another snow day from work tomorrow so I can keep packing boxes! Heaven!
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Hi Artist. Yes, I have to say Squaw Creek was quite the adventure! I have never seen it pour rain for two days in January at a ski resort. You got it, wet and wild for sure. We lost power at the resort for 16 hrs. and everyone huddled at the huge fireplace in the conference center lobby. We were scheduled to leave 1/11, but with all the roads closed we had to stay another night, and that's when we lost power! Hope you got that needed extra snow day; I was ready to go home, although the same storm moved on to Colorado, so I was welcomed to four feet of snow there. I think a dent's been made in the California drought.
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Yes, I know things are progressing, but I will try to live as full a life as I can in the time I have left.
Me in Joshua Tree National Park on Thursday, last week.
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Beautiful, Lita! I love Joshua Tree
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I'm thinking of requesting a different hospice nurse. This one just doesn't listen, and operates as if she knows what I am going to say, and interrupts me. She did this 3 times while we were going over meds for which I needed refills, and I stopped and said, I think I need a different nurse, you aren't listening to me. She said something like, 'you are a very special lady' which seemed completely ingenuous and then said, why don't you test me. Say something, and I'll repeat it back. I said, Don't be ridiculous. I'd like you to listen as we're talking, not just when I'm testing you. She said, no go ahead test me. I said I'm not doing that. Just stop thinking you know what I'm going to say, or what you want me say, and we should be fine.
Ugh.
She's not young and/or new.....From comments she makes, I suspect she deals mostly with family or patients who are further down the mental capacity ladder. I feel like I'm in kindergarten with her.
I just don't need the aggravation.
On another note, I wrote a draft of my obituary today. I'm a decent writer but I can't force it. While I was watching the Packers/Falcons football game, it came to me. I sent the draft to a couple of the Death Squad for their review.
Hope you all had the weekend you desire. I had baby therapy yesterday with a friend's sweet, calm, cute 7-month old girl.
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Sattipearl, that is horrible the way the hospice nurse is treating you. I would not just ask, I would demand someone different. You really don't need or deserve to be treated that way. That caused me to have anxiety, can't imagine if she was actually my nurse. Yuck. I just love baby therapy, she is adorable. Please take care. Best wishes to all.
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Lita and Satti, great photos. I admire you both.
Satti, yes, I think a new nurse would be in order. I don't like that this woman thinks because you are at the point in the disease where you need hospice that it has affected your brain, diminishing your mental capacity. It is the completely wrong approach and insulting to someone who's been tough and tackled living with mbc for years. The right nurse will see you as the whole person that you are and be respectful of that.
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Satti, I am in awe of you. Your strength and resolve; I hope I will be gifted with as much grace when it's my turn. My mother passed away from lung cancer in 1998. Four months before she died, she had a flipping stroke. Short story: she had a neurologist who talked to her like Mr. Rogers would talk to a four yr. old. I almost throttled the guy. Mom caught onto it and actually started answering him in the manner of a four year old. It was the funniest thing I ever saw! Needless to say, we fired him! Love and Hugs MJH
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Lita57, Love this photo! You are on my list of heroines! MJH
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Sharing this for a FB friend. This is a cruise she's put together for Stage IV gals. She is also working on finding sponsors to hopefully help defray the cost for those who are interested but may not be able to afford it. There is also a closed FB page set up with additional information. I'm not currently planning to go, but just offered to share the poster here and I can give you a link to the FB page if you PM me.
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Thanks for posting info about the cruise, Deanna! What a fabulous idea. Wish I could go, but I already have plans for that week in May. If I'm still here in 2018, it would be a fun thing to do, and since it will then be their "2nd Annual" by then, they'll have had time to work out the kinks.
Thanks again.
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Deanna, I'd love more information about the cruise. Would you send it to me either by PM or Facebook message? This sounds fabulous and just what I need right now.
XO
Amy
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I thought after my diagnosis in August 2016 life was coming to an end, my ONC told be 2 years 5 years best. I was beside myself with grief, and like many others started to get my end of life documents together to best support my family (Husband of 25 years, 34 yo son, 21 daughter, 20 daughter). It wasn't until I joined this forum that I realized I wasn't going to dye today or tomorrow but could live many years. I want to thank all of you who post on this site you offer so much hope to those with this disease...
Many thanks,
Ronnie
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dlb,
Thank you for the cruise info Not sure I can afford it, but going to look into it. I can't think of a better way to spend a week than with theis amazing group of women
Nel
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Dlb823, could you pm me the info on the cruise? I think that would be awesome to get a large group to go.
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Ronnie, I was diagnosed stage four bone mets in August too! Like you I though life was done, but these ladies are also teaching me that it is a false paradigm on my part, and that I might still have years! My children are also grown but much older than yours, daughter is 41, son is 38. I've just decided to try to live as much as I can and if I get ten years great! Twenty would be a hallalujah! As I'm over 60, twenty would be great, whether I had cancer or not. Blessings
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Great advice ladies to Dee, Paul's, and any other newbies. It does suck to warrant advice on how to manage Stage IV, but on this thread you don't have to keep re explaining your situation. We understand. I struggle with being on other boards where women who aren't stage IV are "keeping it positive UNTIL it's all over". Well for us Stage IV's, we don't want it to be "over". We just want to manage life and our feelings well.
I always share my "word" with newbies, and that is "fortitude" which means "courage in the face of adversity. I'd encourage newly diagnosed people to find a word or phrase that resonates with you and keeps you reminded to stay positive. (Allowing for venting periods too of course!) Go forth with FORTITUDE ladies!
God bless,
Shelley--Wasilla, AK
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Hi Shelley,
I am also a newbie to the Stage IV club but am slowly coming to terms with what it means. I will hopefully be one of the lucky ones with many good years still ahead (once I get the stupid pleural effusion under control). My MO was quite optimistic given the length of time between my original diagnosis and the recurrence. Like others I am trying to get my estate in order, just in case, but am more focused on figuring out what I want my life to look like in the coming years. In particular, when do I want to pull the plug on work? Not yet for sure but I would be really PO'd if I kept working and then things started to go downhill before I had the chance to really enjoy my life.
Your suggestion to find a word or phrase to inspire is a good one. A couple of weeks ago I came across a quote that really resonated with me. Anyone can give up; it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.
I have always felt the cancer journey is a curse, but in some odd ways a blessing. There are no guarantees for a "tomorrow" for any of us. We could be hit by a bus crossing a road, etc. But I feel I have the opportunity to be more present in my life, enjoying the simple pleasures and splurging on myself when I feel like it. To heck with the retirement fund!!!
Pat
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I received a Burpee catalogue in the mail today. The timing was perfect since we have had 18 inches of snow in the past two days and are expecting 8 to 12 inches of additional snow tomorrow. It is nice to be able to look through the catalogue and dream about what flowers I will add to my perennial garden and which vegetables I will plant this spring. I have to admit that when I was diagnosed with mbc in June of 2015, I did not expect to be sitting here todaydreaming of harvesting vegetables next fall. My, how my outlook has changed! I look forward to posting pictures of my garden for you this summer.
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Dang, 50sgirl, where is it that you live with all that snow and more coming? I also look forward to spring. This afternoon I supervised dh while he trimmed one of our two apple trees. A 60 degree day, we took advantage of it. Snow and 30 degree temps coming back on Monday. I look forward to seeing photos from your flower and vegetable gardens, 50sgirl.
Sadie, wow, you really are new to the diagnosis. You are right in wanting to get your life where you want it to be. Live a full life today. Get up tomorrow and do it again. Be present.
Shelley, I so agree, with us, we want to manage our lives and our feelings well. We do not look at this as something we can't wait to get past. We are doing what we can to stay present!
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DevineMrsM, 60 degrees in Ohio? What a treat that is for you. What kind of apples do you grow? I am sitting here in New Hampshire. Sometimes I wonder why I still live here because I don't enjoy the cold weather very much, but then I look around and realize that this is just "home". I do like to look at the fresh snow when it is still covering the branches of the trees. I feel a spiritual, peaceful strength in the scene much as I feel when I look at the ocean in the summer.
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I think having a word or phrase is a good thing too. One that comforts me is, "Things could always be worse." And indeed, they could be.
So I'm trying not to think about the PET scan Monday.
It's sunny today...time to take the dog out for walk.
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Lita,
Good luck with your scan on Monday. Speaking of comforting words, my daughter reminds me, especially when I'm in distress that God Has a Plan. It helps me immensely.
Amy
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50sgirl, I feel the same about living in the Ohio Valley as you do New Hampshire. The area has its share of problems, but my attachment to this place is deep. We have a golden delicious apple tree and a jonathan. I can very much relate to a spiritual peace found in fallen snow as well as the ocean.
Lita, best wishes with the scan.
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