Life does not end with a stage IV diagnosis (really!)
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Blondie, I wish I was closer to Philadelphia. I would come and take you to the hospital. It sucks to be alone at a time like that. I take myself to chemo (unless they are giving me benadryl) because I'll be doing this for many years and I don't want to tire my friends out. But surgery is a different ball game. I would want someone there with me. I'm sorry your local kid couldn't make room in his schedule for you. It was probably his wife who spoke against it. If I remember correctly, she's a real piece of work. Sounds like you have made the most of it and I'm proud of you for that. You have a pretty good take on things and understand the realities that make up your life. Hugs from Maryland.
Freebird, you can have someone laying in bed next to you and still be very much alone. My husband told me the other night that my addiction was self pity (he is an alcoholic). Guess I won't be confiding in him my fears ... LOL! Some how I thought my husband was the one person I could let my guard down with. NOT! Back to my girls friends when I need a pick me up. Funny, most everyone who knows me says I am extremely positive. DH seems to be the only one who sees me in a negative light. That's my reality!
Cancer has been a life changer for me in so many ways. Oh, there are some negatives, and I do feel sorry for myself from time to time, but mostly I am just glad for the time I've been given. I'm thrilled to be nearing my 7th anniversary with stage IV and busily planning my summer. My husband's family live in Norway and we haven't been there in 30 years. He has an uncle who passed away last year and left us a small inheritance. We thought it would make him very happy to know we are going to norway to visit family with the money he left us. We will be seeing the one living aunt and lots of cousins and their extended families. Of course we will get trip insurance. Although I am happy about the trip my favorite times are spent with my brother, sister, mom, and grandkids. My adult kids still cause me stress when i am with them but I pray everyday that it improves. I never give up on them!
Life is way more complicated dealing with Cancer, but it is still a beautiful thing! I want to be on chemo for many more years so I hope they keep coming out with new things!!
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Gatorgal,
Yes, you can be married and still be alone. It is not easy to be married to an alcoholic. It was too much for me and I got rid of him after 23 years. I am lucky that my dd's and SIL's are close by and always there for me. Jeg kan snakker litt norsk. Enjoy your adventure in Norge!
Ladies,
I generally am not possessive of threads that I've started and don't mind if they stray off topic. I would, however, like to stear this thread back on track as I think it would be helpful to new stage IV's as well as those who are experiencing being stage IV yet continue to lead a relatively normal life. Not a reality for all of us, but clearly part of the stage IV experience for some
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exbrnx,
I'll chime in with some good news: I celebrated my 66th birthday yesterday, four years to the day that I received confirmation of my stage IV diagnosis. I also got a letter from Social Security telling me that I was officially off SSDI and now on regular SS since I'm now full retirement age. Same payment, different pocket. I've had a few bumps in the road, but four years ago I wasn't expecting to be around this long, let alone in such good health. My DH and I are headed for Australia and New Zealand next week and I'm ready to enjoy every minute of it, carefully scheduling the cruise between monthly Faslodex shots and Zometa infusions. I don't know how long the good luck will last, but that helps me focus on living intensely and appreciating the caring family and friends who are there for me when I need them.
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Happy Birthday Carpe Diem! That is indeed good news. I hope you and your DH have a wonderful trip
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carpe,
Happy birthday! Good news on the SSDI. I loved my NZ/AUS cruise last year snd know you'll have a great time. Thanks for helping get this train back on the tracks
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Happy Birthday, Carpe Diem!! I'm so happy to hear you feel well! Enjoy that fantastic trip, it is somewhere I would love to visit someday!
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caryn,
I know just a bit of norwegian but fortunately most Norwegians (except the older ones) are taught English in school so I shouldn't have any trouble communicating with the relatives. My DH does speak fluent norwegian as well. Looking forward to a wonderful time there. Norway is spectacularly beautiful. I've managed to make do and live a happy life in spite of my situation. Al-Anon has been a great help to me. Being a glass half full type is helpful also and I have a terrific circle of friends. Have been so fortunate to have the same oncologist since 1987 and he def keeps me going!
Happy Birthday, Carpe Diem!!
Happy Day to all my stage IV sisters. Find the good in every day!!
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Congratulations and happy birthday carpe diem! GatorGal, I think you're going to have a great trip. Travelling is so great. Mine's scheduled for May. I'm currently enjoying a latte at a nice little coffee house. I'll go do some yoga tomorrow. I hope everyone finds some fun stuff to get into this weekend.
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carpediem - yes to " living intensely! " love the wording
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Love cruises
Thanks gator, surgery went well screw is gone, yay, ankle hurts, trying to figure out what 2 eat.
Happy birthday
Yay ex 4ssi
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blondie, so glad surgery is over and hope recovery is smooth. Eat whatever you want! You deserve it!
Carpe diem, the NZ-Australian trip sounds heavenly. Enjoy!! Dunesleeper, where are you heading?
Sounds like lots of good things are going on in spite of the crap we deal with and that lots of us are looking forward to letting the good times roll. We just keep proving that life doesn't end with the stage iv diagnosis! REALLY!
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Life in the pragmatic lane
I am, generally not given to ranting or venting (not that there is anything wrong with that!) but I have been mulling over some things lately and decided I needed an escape valve. First, know that I am very tired as I'm in the midst of parent/teacher conferences and although I value the chance to communicate with parents in my class, it is an emotionally wearing process and I get terribly behind on the rest of my work. Please excuse grammatical errors, contradictions or anything else you find odd or objectionable (I'm sure someone is already offended).
I am a die hard pragmatist. I attribute this mostly to my nature, but also to life experiences. I see nothing wrong with the idealistic, but I am very grounded in reality. I love history, but I live in the present. There are no "bring back the good old days" for me, because the past is just that. I function in the here and now, with a bit of dabbling in the future. So, it is not surprising that my approach to bc has been, well, pragmatic. This is where I sometimes run into trouble. Pragmatic me, questions and wants proof. I also, BTW, would love treatments that cured my bc and did no harm to my immune system or any other part of my body. This is what drives me to visit the alt forum and where I, inevitably, get into hot water. Yup, that ole' pragmatic person, rises to the surface asking questions , employing critical thinking and falling on the side of the realistic. I know these things are not necessary for some. Simple faith, however, doesn't work for me. I will be the first to admit I am a fool for continuing to post in certain places, because the end result is always the same. 'Sigh",
Yes, I know, conventional medicine doesn't, currently, hold all the answers, but my doctors were more than happy to answer my endless questions, provide scientific research, and clearly outline the pros and cons of possible tx. Because of this, I chose not to do chemo and see how things went with AI's. July will be 4 years since my dx and I'm still holding steady on the AI's. I will, however, not hesitate to use chemo when all the AI's fail me, but ferevently hope that something better comes along in the interim. I don't care if it comes from the conventional or alternative realm, but I do care that is properly trialed and vetted.
On trying to "teach" folks on these forums something...Let me be very, very clear. Yes, I am a proud, passionate and committed teacher who loves her job, but...I teach elementary school. I have no desire to teach adults anything. I express my opinions and post about personal experiences. Love it, hate it, agree or disagree and ignore me if needed. Nothing is intended to teach any of you anything. As they say, take what you need and leave the rest (or leave it all).
My writing style, especially with respect to personally addressing others has been, shall we say, called into question. Someone mentioned that I was like a six shooter with a pink ribbon around the muzzle. I thought that was pretty clever, save for the fact that I don't like pink. Someone suggested it was passive aggressive and/or insincere. Not intended to be any of that but yes, I try to be nice and honest at the same time. I do care, very much, about sisters on these forums, even if I disagree with their tx choices, lifestyles, political views, religious views, clothing style or taste in music. I also firmly believe that support doesn't mean saying that whatever someone does is OK and their choice. If you're about to walk into the fire, I will tell you that you'll probably get burned and try to yank you out. For me, that is more caring and, well, pragmatic. If I couch that in nice words, that's just my style. You don't have to like it or read it.
On that note, my ego, self esteem or emotional stability does not ride on whether folks on these forums approve of me, like me or want my recipe for broccoli salad. I am very self sufficient, happily connected to family and friends and know who I am. I cherish the women I have met here and cherish the diversity, intelligence and warmth many of you bring to the bc struggle, journey, war, lifestyle, or whatever you'd like to call it. But, if you want to put me on ignore and never have to read my drivel again, please do! I never imagined, whether here or in the real world that everyone would like me, nor I them. That would not be pragmatic.
So my venting is over. I feel much relieved for having done it or maybe it's the gin and tonic that has brought relief
Thanks for your indulgence and have a wonderful evening. I know I will.Caryn
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Hang in there, exbrnxgrl. I think along the same lines as you when you say, "support doesn't mean saying that whatever someone does is okay and their choice." I, too, am more of a tell it like it is person.
In regards to the alt forum, I feel I have a completely different mindset than most of them. If that's all they chose to work with, it seems way too cavalier to me, reckless with their lives. Since the stage iv dx in 2011, I've known numerous people in my community die of cancer, the school psychologist, the young 8 year old son of the school nurse, my niece's childhood friend at age 18. Just this month, the well respected mayor of our town succumbed to the disease as did our former mailman, a great guy the same age as me. This shit kills. I would not be here today if not for conventional medicine. It's sort of amazing I am here today. A number of people I mentioned were diagnosed long after me and had a very short time before passing away.
Your posts are important to me. You bring great insight to the forum. We both know, tho, that the anonymity of the Internet allows others to be less than their best self. They can make claims, exaggerate and dramatize whatever it is they are or what they're experiencing. Some use it to gain attention and those sucked in by that can't even see it. Others intentionally flame a matter because they look forward to viciously attacking anyone who jumps in with independent comments.
Imo, if a person is posting on a forum and it works them up so much that it requires a trip to the hospital, they should cancel their internet service! There is something very wrong about disagreeing with cyber strangers to the point that it makes a person sick and that person should be using their time to exam their life and make changes, not defending themselves online.
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Just want to let you (exbxgirl, missdivine and everyone else) know that I value the information and insights from your posts. As the doctors say everyone is different and will respond to treatments and people's posts differently. This sight has helped me cope.
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Hang in there? Yes, it's the conference that are wearing me down. Two more this afternoon and one tomorrow and I'm done. It is great to have that one on one time with parents, but it's utterly exhausting.
The bco boards are not getting me down (I did need a bit of venting time last night and I enjoy the diversity, but I admit to being baffled by some. I guess I'm just an insensitive lout
. Yes, I do make jokes about many things, most of all, myself. This really annoyed my mom at times as she was a very, very earnest person. That's just how I'm made and the ability to laugh, especially at myself, has helped make this bc more bearable. Take care, my friends. My next conference is here0 -
exbrnxgrl, Although I haven't been reading all the posts on this and some other threads, it's evident that something(s) has been said or intimated that precipitated your vent. Simply put, I want you to know that whenever I notice a new topic you open, I immediately look forward to reading it. I've never, ever, noticed wording that sounded in any way critical or hurtful; quite the contrary!
I hope that you will be able to catch up on your rest and that your spirits will rise accordingly! Please know that you have - and continue to do - so much good for all of us!
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Bestbird,
Thanks for your post. I guess there are some folks that I will never see eye to eye with. That's ok as I really do believe that variety is the spice in life and I am the fool for not restraining myself in certain circumstances. I am kind, but honest as well. I realize that some view this as "fake kindness" but I have no control over their perception of who I am, so no worries there. My beautiful granddaughter is turning 3 on Saturday and I'm getting ready to make her cake. I am the baker and my younger dd is the decorator. The cake is going to be in the shape of a cat's head as she is currently crazy about kitties. What could be better than that?
Caryn
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Carn, I would love to get your recipe for broccoli salad
On your rant, I totally get it!0 -
exbrngrl,
I am just trying to process the fact that how I feel about you doesn't determine your self-worth. I may need months of therapy now and will now begin to reevaluate my own value.
:-)
*susan*
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Caryn,
Read your rant. Good for you, I think once you are stage IV, a lot of your BS filters just "fly" away. Of course too online it's difficult to know exactly how others will take your postings. Glad you got it out of your system! I know that if I have a question, that I will get an answer from you that is well thought out & taken from information from a lot of sources. Keep that pink beribboned six shooter in your holster, you never know when you might need it again!!
Cheers, Dee0 -
I'm confused, but that's really nothing new for me.
I'm going to a high school musical tonight. My acupuncture baby is in it. LOL. I was treating his mother when she became pregnant. Supposedly she was not able to get pregnant. So, I have an acupuncture baby -- in high school.
I'm also checking out concerts in my area, especially Pier Six.
The radiation got rid of a lot of the pain. Between that and the rising of Spring, I'm wanting to do all kinds of things. Pretty much anything but lay in bed.
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Hey dune,
Glad to hear that winter is waning as is your pain. I firmly believe thst doing things, kind of getting outside of your head, hugely improves QOL. Part of that is that it makes us feel like part of the real world! When you have a serious disease it's often easy to isolate yourself.
My granddaughter's third birthday was today. We made a her a kitty shaped cake and had a great party, though like all children that age, all the food, gifts and attention (coupled with no nap) lead todome late afternoon crankiness. There is nothing more life affirming, for me, than watching the child of my child grow and flourish.It was a great day!
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There is nothing more exhausting or fun than a three year old birthday party! That said I could hear my mother's voice saying "when you throw a stone into a pack of dogs the hit one yelps" - that is why I NEVER go on the alt threads - you either agree with them 100% or they "gang up" - sorry but that's not why I come to BCO - I come to be educated and uplifted - glad you're here exbrnxgrl.
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:-)
So glad you got the joke. @susan
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Sorry having trouble eith my eyes warterin can't read any of it w bbl
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hi Blondie,
Hope you're doing ok. I'm sure that the watering eyes are very annoying.
Take care
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Normal? Yes, for us it is.
No coffee, no food. You know the drill. Fervent prayers that I can drive safely to the hospital campus while suffering caffeine withdrawal. If I'm pulled over, for any reason, I'm sure this is a legit defense. You've surely guessed, by now... It's scan time. Everything goes well. Techs and nurse who accesses my port are lovely as always. I make a bee line to Starbucks for coffee and a breakfast sandwich afterwards. Did you know that they don't sell coffee by the gallon? Pity😳 Now is when my scanxiety begins. I usually hear from my mo in less than 24 hours, sometimes sooner. I think I need some retail therapy to soothe my nerves and I think I have a Macy's gift card burning a hole in my purse. Really, this is all completely normal (well, for us at least
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Normal? Yes, for us it is.
No coffee, no food. You know the drill. Fervent prayers that I can drive safely to the hospital campus while suffering caffeine withdrawal. If I'm pulled over, for any reason, I'm sure this is a legit defense. You've surely guessed, by now... It's scan time. Everything goes well. Techs and nurse who accesses my port are lovely as always. I make a bee line to Starbucks for coffee and a breakfast sandwich afterwards. Did you know that they don't sell coffee by the gallon? Pity😳 Now is when my scanxiety begins. I usually hear from my mo in less than 24 hours, sometimes sooner. I think I need some retail therapy to soothe my nerves and I think I have a Macy's gift card burning a hole in my purse. Really, this is all completely normal (well, for us at least).
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Caryn, although I am not Stage IV, I follow your thread because I think we're on the same wavelength, and your posts have always been enlightening and yes, entertaining, to me.
So anyway, I just came across your "rant" and I have to say, in that person's defense:it did come across a little preachy and judgemental to essentially say "maybe you should stay off the boards if you are so fragile it sends you to the hospital".
I know you will realize that me pointing that out doesn't mean I am bashing you in any way. Just my point of view. I like "arguing" with you because I know we can disagree without anybody getting offended 😀.
Like you, I am very practical and realistic, which translates to many people as bring "negative" and pejorative. I know of another person who came off the boards because she was accused of the very same thing....despite the fact that I found her posts, like yours, to be very reasonable.
We all know that the alt proponents define the "critical" in "critical thinking" as "condemnatory" rather than "analytical". So I think I will stop questioning anything on the alt threads now, just as I stay off the religion threads. Fruitless trying to argue rationally with what people believe, rather than what can be proven.
(Addendum: I also have a very irreverent sense of humour that seems to offend a lot of people. I really want to start a fun thread like that to discuss ANY topic, for ppl like me who won't get offended, because , let's face it, a lot of times we come on this board just because we're bored. But I don't think the mods would approve, lol. I can so see it getting totally out of hand!)
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