Life does not end with a stage IV diagnosis (really!)
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steelrose,
Right on!
Caryn
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Rosevalley, altho we may not see eye to eye on this particular matter, I have no problem with your voicing your own opinion. In fact, I admire it. In my every day life, I work with too many people who are sort of bland, never sticking their neck out or speaking up for anyone or any reason, and I often end up being one of the only ones who says what everyone else is thinking but are too wimpy to speak up.
In my own family, I have six brothers and sisters and we all have strong opinions and they are all different from each other. We often disagree, yet we all get along, if that makes any sense. Because of them, I know there are many ways to look at something, and that doesn't mean that one way is more right or wrong than the other. It's just a difference of opinion.
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And a big right on to you too, Mrs. M!
Caryn
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Rosevally--not sure why you feel the need to single out and be ugly towards caryn. I'm very sorry your run with the drug was terrible. Have there been no good moments since your stage 4 diagnosis?
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Sarcasm is the lowest form of wit.
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me? I'm being honest.
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Rosevalley, I really don't understand why this is still going on we are suppose to be sister who are going through the same thing I come to breastcancer.org to hear all type of information not just negative information. I am hear to laugh, cry and give my best advice I can. If this forum bothers u so much don't read it or look at it. It really bothers me why you keep going and going about this. We are suppose be there for each other and make our lives more comfortable with all type of information but at this moment u make me very uncomfortable to even come to breastcancer.org. ENOUGH OF THIS. Please let just all get along..
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Fitzy,
Who was being sarcastic? I hope you didn't think it was my "right on" posts, because that wasn't meant sarcastically. An archaic phrase to be sure, but I do use it and sarcasm is not my thing.
To All,
I am disturbed by the idea that a post expressing my opinion and detailing my circumstances has become divisive. I believe that the stage IV forum exists to lend support to all of us, regardless of where we are with respect to our disease. Some of us have relatively normal lives and it's important that our voices be heard, as well as the voices of every one else along the stage IV spectrum. There is no right or wrong with respect to this, only different ways to view it. May I suggest, to those who find this thread upsetting, that they simply block it. And to those who find me not to their liking, or the fact that I'm a teacher, feel free to block me. Nothing personal, since you don't know me, and I completely understand.
With happiness in my heart and good wishes to all,
Caryn
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I agree with stellarotovsky.........we may not all get along and always agree.......but there is no need to personally attack someone. Stage IV is tough enough, we don't need to draw battle lines and take sides. I love all my stage IV sisters, even if we don't always agree!
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Well said Stella.
Rosevalley, you said your piece and shared your opinion. Thank you for sharing. If this thread upsets you, feel free to scroll on past.
It upset me too, initially, but I acknowledge that my reaction is MY issue to deal with. Hearing about others who have 1 met and are doing well on treatment makes me sad and jealous, because that's not the hand that I got dealt. Do I ill-wish them? Not for a minute. Do I think they should keep quiet for fear of upsetting me? Not on your life. Why should they be silent? They have as much right to talk about whatever they choose, good times included, as anyone else here.
Every day we have women coming to this board who are newly diagnosed, terrified, and thinking that they should start digging their grave immediately. I was one of them. A thread like this one, full of hope and happy stories, would have calmed my terror and helped me stop feeling like I had just been handed an instant death sentence. I appreciate that those who have stories of hope to share have chosen to do so.
If you don't like the discussion, just move on. This is getting beyond childish now.
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Caryn, I don't think Fitzy was suggesting you were being sarcastic, I think she was referring to rosevalley's post and her remark about you being a teacher. I think you have more than made your good hearted intentions known, but some just aren't on board.
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kebab, kayrnic snd stella,
Two thumbs up and as they say in a Norwegian, tusen takk! (A thousand thanks)
Caryn
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Kay,
You may be right. The internet sure does have it's limitations sometimes.
Caryn
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I just want to say I am newly diagnosed with Stage IIIC (doing chemo now) and am terrified. I started reading this stage IV thread because all the stats say that there is a high chance of recurrence for me. And I've come to realize that no matter what stage you are diagnosed at, that Sword of Damocles is always hanging over your head. And I am terrified. Not terrified of dying so much, but terrified of pain and suffering and treatments and diminishing QOL. So I just want to say a big Thank You to Caryn and all the great ladies on this site who give me HOPE that it is not ALWAYS terrible, and that you can have good moments, a somewhat normal life with a cancer diagnosis, no matter what stage. I know that it can be awful, I saw my friend suffer 5 years of treatments, surgeries etc. with a stage IV diagnosis and do all she could before she passed away. I think we all know how awful it can get. We all know what road we're on. But if it weren't for the uplifting stories and encouragement and HOPE that I get from people like Caryn on this site, I would be curled up in a ball crying for the rest of my life.
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So nobody thought the timing and circumstances of the OP was a liitle weird? While collecting and sending cards for someone who is clearly very ill, this was posted. That's pretty harsh in my book. Just wanted to let you all know that I don't ever begrudge anyone their happiness, good fortune, and accomplishments and I doubt anyone on the other side of the fence does either, just thought it was a tad insensitive and in very poor taste. Like you all said, don't like, don't read but please keep in mind that it doesn't hurt to keep others' feelings in mind either. Had that post been at any other time, under any other circumstances, I doubt anyone would have been offended. Perhaps that fact was lost here.
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leggo,
Thank you for your perspective. I also appreciate the fact that you expressed it without sniping at me or my profession.
Caryn
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I was diagnosed with ILC stage III almost 5 years ago. My daughter and her husband returned from a diving trip in Belize to find out that I had just had a double mastectomy. Within a month they moved from the California to Florida to be with me through treatment. I was so happy and surprised. They liked it here, found good jobs and stayed. It happened during a time when they were finishing their education and hadn't really decided where to settle.
Last November, about 4 1/2 years after first diagnosis I was found to have mets to my abdomen. My daughter and her husband are now living with us while they have the house they purchased and demolished so they can build a new one. Oh yes, I forgot to tell you they have a giant AND a mini schnauzer (dogs) as well as a 1 1/2 year old little boy (my only grandchild). It's a zoo around here! And I love it!
Talk about bad news, good news. I count my blessings and try not to think of my problems.
My daughter is going to have a baby girl in July, six month before they are to move into there new house.
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I would think that the task of collecting cards and making sure they get to their destination takes some effort. I'm assuming that one would have to feel pretty good or be in a good place to even offer such a kind gesture. I would also think, that while one(several ones) is very sick, others are doing ok. Trudging along. I would hardly think the very sick would care that others try to pass on some hope to newbies. I imagine the very sick, which were once newbies, searched for optimistic and/or hopeful stories themselves. We don't all have to agree. That would be boring. But we can respectfully disagree. I hope the newly diagnosed will find much love and support here as well as answers to the many questions that come up. I know I have really appreciated everything you all have shared. This is such a private issue, yet you all are so kindly sharing your hopes and your fears. The thread that restored my faith in humanity is caprinesses "I'm going to hospice and I'm really scared" thread. Teri has opened up her life to us, and so many from all over the world have joined in to support her. It's one of the greatest gifts I have ever been given.
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And as I re-read the entire thread, I just have to say WOW!!!! to fitzy's post. That's just cruel and I think you know it, or maybe you don't....in which case I feel very sorry for you. I can't imagine saying that to someone else who's terminally ill. Something to mull over.
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No, Caryn I wasn't referring to your posts at all but as Kay said, it was this comment, 'Agreeing with Caryn is the only acceptable answer. She's the teacher. I suppose we are all being taught a lesson.'
A very sarcastic & very unnecessary jibe toward you, Caryn. Call me cruel if you want but I find such sarcasm very poor form in any discussion forum, especially one where information & supportive help are the primary objectives.
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Fitzy,
Thanks for the clarification
Ladies,
I really do acknowledge everyone's perspective and their right to express it.
'Agreeing with Caryn is the only acceptable answer. She's the teacher. I suppose we are all being taught a lesson.'
I just don't think it's necessary or productive to resort to sniping at me or my profession. Teaching first graders is quite enough for me. I leave adult education to someone else
This is not a thread that even involves the concept of agreement, simply my experience , my journey. As to the timing of it, sadly, at any given point in time there are women on this board who are struggling. I wish with all my heart that it wasn't so, but that is another facet of the stage IV reality.Caryn
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I dont think there is any need to get personal. Just different points of view, no right or wrong
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Can I suggest let's move away from the difference of opinion discussion and return to the original intent. It could seemingly go on forever! Our energies are best used for living, getting thru each day as best we can - no matter where we are emotionally and physically.
I am at the Cape for the weekend -just me and my pup - no expectations from anyone to do anything but what I want. My bff has a house a few streets away, walking the pups in a bit and maybe some shopping.
Hope all have the weekend they intend and find some joy in the day
Be well
Nel
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My favorite times on the Cape are during the off-season. Looks like you get a trade-off this weekend. Today is warmer but cloudy; tomorrow you will have sunshine with colder air. I bet the pup [and you] will enjoy your walks! Enjoy!
*susan*
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Thank you Nel, excellent suggestion. Remember, blocking a topic is an option for those who find it upsetting and please refrain from personal attacks.
So, onwards. One interesting aspect, to me, about living with stage IV, has been the way it's changed my perception of what the "future" is. When my bone met was found I had no symptoms so I was stunned to learn I was stage IV. Probably because of this, I never thought my death was imminent . I felt comfortable with my usual short term plans and even with younger dd's wedding which was 18 months away at that point. My trip to NZ/AUS was proposed about 15 months in advance and it was the first time I hesitated. Would I still be here, would I be too ill to travel? Can I get trip insurance to cover a pre-existing condition? Well, it all worked out and I'm thrilled that I went ahead with a long term plan. Still, the longer I go on, the more I feel as if the clock is ticking down. BUT, (yes, a big but) I decided it's not going to stop me from planning to do things. Of course I know my health can go south at any time (yes, trip insurance for pre-existing conditions does exist) but I may as well keep enjoying. On another note, I missed my granddaughter's first water babies class this morning (taught by younger dd). I was just too tired to wake up early on a Saturday. I do chalk that up to bc. Next weekend perhaps.
Caryn
PS: I love the beach in wintertime too
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When I moved from stage III to stage IV in September of 2012, I thought I knew what it meant. I had seen my sister go down this same path and she was gone in less than a year. I didn't immediately start planning my funeral because I knew that I would have at least a year but I didn't figure I would make it past two years.
I can't tell you how many times I would read a post and tell my husband about it. "Here is a lady who is 6 years out!" "Here is another one that has almost made it to 5 years!" This went on for two months and he enjoyed it as much as I did. It gave both of us hope that I may get more time.
Unfortunately we still haven't found a treatment that lasts longer than 6 months. And my track record from the chemo I had for stage III was no response and lots of SEs. So I have doubts about getting to a 4 or 5 year mark. But I have learned that there is life after a stage IV diagnosis.
Eight months ago I took up watercolor painting. I love it and enjoy going to class every week. I ordered some new planters for the garden so I can have veggies growing in a raised bed -- don't need to bend over to plant, weed, harvest! Two weeks ago we bought a new car. Finally got the closets organized in the extra bedrooms. In other words, I am doing the stuff that I would do if I didn't have a death sentence hanging over my head.
It is not because it has been easy for me. I'm on 40 mg of methadone a day for pain. I take oxycodone when I have breakthrough pain which usually happens once a day. I've had lots of problems with my hips and walking was a real problem but the massages that I am getting now seem to make a world of difference. My fatigue never let's me plan a full day and if the plan involves other people then they have to be flexible because I never know when I will hit the fatigue wall or if I will even have the energy to get out of the house that day.
But I try to work with what I have. I make plans but I am always ready to change them. I continue to look ahead as if I am going to be here next year or the year after.
I live my life the best I can. I don't want to sit in my chair and watch the world go by. It is kind of like the saying that people want to spend all their money so the when they die the last check will bounce. Well I hope that I am busy up to the last minute and if my shipment of new art supplies comes from Amazon the day after I die, that will mean I never stopped living while I was alive.
It was because of all the stories of hope and strong ladies on BCO that have taught me this attitude. I wish I was one of the ladies who "only" had bone mets. But just because my cancer is more complicated and not easily kept at bay, I am not going to stop living!
I totally agree, life does not end with a stage IV diagnosis.
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I pretty much did start digging my grave upon stage IV diagnosis. I had no clue and it had been over 10 years since original diagnosis so BC was way off of my radar. I wouldn't even shop for new clothes for several months because I thought it was going to be a waste of money. I joined BC.org about a month after diagnosis and it saved me. But those initial weeks were an emotional train wreck. The ladies on this bored eased my fears and even though I came to the reality that my life span was probably going to be limited, I also learned I could handle this. It wasn't easy, but once the treatment plan was in place.....I felt a lot better. I have had bumps along the way.......ovarian cysts, cellulitis, slipped discs in my back, etc. all of which are made worse because of being stage IV BC. You get every test in the book and then some. So I guess I can sum up my journey thus far to with this: I have learned to live with, not die of breast cancer.
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Anacortes,
What a lovely post! I too am looking forward to my homegrown veggies, I have a tiny patio but it has a few raised beds, enough for some tomatoes, peppers, eggplant and basil. My sweet granddaughter was playing out there the other day and asked where the tomatoes were, I couldn't believe she remembered them from last summer as she is not quite two. She loved picking tomatoes, however she picked mostly green ones. I never got upset since she is so cute! I am a terrible artist but envy those who have this creative gift. My latest geeky pursuit is learning Norwegian. Yes, Norwegian, a language that only about 5 million people speak. I got there, indirectly, while I was studying Norse mythology (yes, I'm an uber geek!). It a very pleasant language and not to difficult to learn. Who knows, maybe I'll visit Norway someday. Hat det bra!
Caryn
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Thanks Caryn.
I hope your Norwegian goes well. My mother would be so happy with me if I tried to learn the language. She knows some but is far from fluent. Out of the twelve siblings in her father's family, her father and another brother left the family island. There were also twelve siblings in her mother's family but I forget how many came over. Needless to say, I have a lot of relatives in Norway. One of them is a friend in Facebook and she only posts in Norwegian. Not quite sure why I have her as a friend since I can't read a lick of Norwegian!
BTW - my artist skills are not very good. But I have a great time playing with the colors. I paint only for my enjoyment - if it happens to look good to someone else then it is only a coincidence. Probably won't happen again,
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Anacortes,
It's funny to have FB friends who write in a language you can't read. I speak a little Dari (Afghan Farsi), but never learned to read it. Some of my Afghan friends post in Dari and when it shows up in my feed, I haven't got a clue. Here's the best I can say about my Norsk (Norwegian) for now:
Jeg snakke litt norsk. (I speak a little Norwegian )
I love the idea of learning something purely for ones own enjoyment. Enjoy your painting!
Caryn
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