Life does not end with a stage IV diagnosis (really!)
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Geeze, Caryn. Sorry the saga continues. I haven't gotten any private messages warning me off in about 2 weeks. And have gotten some very supportive messages from people undergoing some nasty treatments.
I agree, we're all battling the same beast. And we all have our own demons to fight and dragons to slay. I wrestle with a bit of survivor guilt. Don't take me wrong - I'm happy that I'm stable. But I do see how unfair it is when others aren't stable and at least on paper have more to live for, like young children. I do believe everything happens for a reason; sometimes the reasons are incomprehensible. For example, my mother, who was an amazing person, died fairly young (68) while my stepfather, who is a total jerk (I'm being kind) is still alive and healthy at 82. Just wrong! So I do get the concept that being stable seems unfair to some. And that there can be anger and resentment at the unfairness of it all. That said, there are people in this world who are totally healthy and think it's damn unfair that I have cancer when "less deserving" people are healthy. At the end of the day, I don't think it's up to any of us to judge who is more deserving of good health (or cancer). So I am delighted that this thread exists where we can celebrate our victories (no matter how large or small), embrace our similarities and respect our differences.
So, now that I've gotten that off my one and a half boob chest, on a happier note, here's a couple of views from our house. The pictures don't do the rainbow and sunset justice, but hopefully will lend a smile anyway!
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Thanks Terre! Those photos are gorgeous, especially the sunset. Yes, bc is unfair and indiscriminate. If I knew why I was doing well, I'd gladly bottle it and give it to anyone who needed it. I know what you mean about your mom vs stepdad. It is certainly beyond mortal comprehension. Why is Charles Manson still alive? Why hasn't he gotten some dreadful disease?0
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Caryn, Personally I don't get it, I don't understand why people are bothering you. If they don't like this thread then they need to stay off of it. It would be different if you were posting on some other thread where someone is asking for help and stating that they are having a rough time. If someone posted there about how things are great for them that would be wrong. I don't think you should have to justify anything and if it were me I wouldn't be justifying anything. Clearly, people enjoy this thread since it now consists of 20 pages and that is justification enough in my opinion.
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Caryn,
I second what Musiclover said. I personally found this thread uplifting when I joined this forum last year. I understand all of our situations are different and your case may not be my reality, but I find it off putting that you and other members get private messages just because you are doing well. I believe that's why there is a block topic button that is very easy to use, I'm not sure why people choose to put this thread down versus using that option.
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Thanks Caryn, your insightful comments about the current debate about the treatment of members is quite helpful. I'm particularly impressed with your nuanced sense of what it means to be a bully (and to be bullied).
I urge caution however, there is a robust record of your comments, here, there, and everywhere, and your ongoing actions do continue to speak quite loudly about your own moral compass.
And moderators, seems your credibility is now also on the line here. Just saying.....
Sophie
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SophieJean,
I sent you a pm.
Caryn
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KiwiCatMom love the pictures. Thank you for posting. Honestly, who has time for internet squabble? I find it a time and emotion waster. I'm just trying to enjoy each day. I love this thread. I find all the NED stories uplifting. My favorite one, although I can't remember who it was about, is the one who is NED after 4 years of treatments. Caryn, I've seen what you have written on other threads. You seem genuine and kind hearted. Have a great day everyone.
Dana
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Hi Dana,
Thanks for the nice post. Terre (kiwicatmom) and her dh are very good photographers.
I think there are a few of us who are 4+ years at NED. Too small a number, to be sure, but as Terre mentioned perhaps by studying us, we can get some more insight into why some people do well and that can help others. Right now, I just chalk it up to a very lazy cancer and dumb luck. I am entering my 5th year with NED and still, essentially, on my first line tx. I did switch from Arimidex to Femara, because of se's and had rads to my bone met to render it necrotic. Take care and do enjoy each day.
Caryn0 -
Nice posts Dana and Caryn.
Almost five years NED! that's awesome, Caryn. To further brighten the day, pics of our little hoons who are now over 2 kg each! They love "their" cat tree. It's falling apart (it was really cheap) and the big cats aren't all that interested in it, but the kittens think it's great fun.
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OMG Terre, they're getting so big but they are still adorable. Hope you're well. Cheers, Dee
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Thanks, Dee! Doing well overall!
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Terre, they are sooooooooooo cute. I think Dusty might have a problem if I brought a kitten into the house, though, so I will have to admire them through your pictures. I also loved the pictures of the view from your house. It looks secluded. Is it?
OMG I just scratched the hell out of the healing nodes below the implant. HA! I think itching really does mean it is healing. Very cool. Very cool indeed.
I mowed the lawn today, so I feel good that I accomplished something. I'm trying to get my mother to take a day trip or short over-nighter. First I liked the looks of Lancaster, PA; but a nice hotel in Ocean City, MD would be nice too.
On Tuesday, we took my great-niece to the National Aquarium in Baltimore. We had a good time, and I didn't feel at all fatigued until I sat down in the car. THREE children to take care of, as I went to the door and told her what Giada was doing (trying to make me choose between her and her brother) and that I refuse to be put in that position. LOL Poor mom.
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You know, I seriously wish I was not severely allergic to cats. They look like they do do many funny things. I saw a commercial on TV for some kind of cat snack that comes in a little round ball. The ball has holes in it with string like pieces of cat treats sticking out. I guess the cat batsthe ball around while trying to pull out a string treat. I think I could watch a cat do that girl hours 😃
The area on my chest where they did the biopsy/excision today is really bothering me now. It feels like someone is continuously pouring rubbing alcohol over a very raw, open wound. Dermatologist advised Advil,but it's provided little relief. After this, I hope to not develop cancer in any other body part! Two cancers are more than enough, thank you.
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Hey Dune! Glad you had fun at the Aquarium. Can't imagine doing it with three children - that would be tiring! And so happy your nodes have shrunk and things are healing. Whoot whoot! And an overnighter sounds good; I enjoy doing that., Mowing the lawn sounds tiring but rewarding.
Caryn - you overachiever you. Seriously -what a bummer! I'm really sorry you're going through this. Hope it feels better soon.
As to the kittens - they are really funny. And growing like weeds. This morning, one was "hiding" on the stairs - crouched behind a riser and watching her sister. Of course, her ears and eyes were visible and she had this look of intense concentration on her face. I'm sure she was convinced she was invisible. The do keep us laughing!
Well, back to housework. Repacking, sorting, consolidating (finally) in prep for company next weekend and the next move in a couple of months!
Sending hugs,
Terre
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So, since is not ending for me and I can't think of where else to put this, and I started this thread, I'll put it here.
This evening, another member on another thread, posted of her unhappiness with me regarding ... (I don't want to go there again, if you don't mind). Anyway, without quoting the whole post, I will quote one sentence:
"Grow the f*** up! Take your one, grade one met and shove it up your ass. "
Now, I understand anger, I understand disagreeing with someone. This ? I simply don't understand. Let me say
1) bullying and denigrating= never acceptable
2) blaming someone for what has happened to another? No one on bco save for the mods, knows the full details of what went on. Even I am not privy to everything involved
3) Please, please , block me if my presence here causes you to create posts like this.
Hopefully, the post will be deleted shortly, but I suspect I'll be shaking my head for a longwhile.
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Wrenn,
Can you and I agree to end this dance? I have made it clear that people don't have to like me or agree with me, but they can do so civilly.
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Not a thing wrong with you! We just don't see eye to eye, so let's put it to rest.0
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'Night, wrenn
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Wow...what a shame this all is. This is a really long post. Feel free to skip it - it's a bit of a novel.
I do understand that people are hurting emotionally, terrified, miserable, in pain physically and mentally, and that it's super easy to get into a very bad head space with Stage IV. How do I know? I watched my mother die, up close and personal. And I know that the horrific days others are facing will likely be my days at some point in the future. And how lucky I am to be reasonably ok right now. And knowing that this could change at any time, so doing the best I can in the meantime.
I also understand that intent doesn't always translate on line. My interpretation of "life does not end with a Stage IV diagnosis" was just that - once you're diagnosed, life goes on. I've posted this before, my a friend's mother-in-law spent 10 years waiting to die after a cancer dx (not sure what kind of cancer). She wouldn't visit her grandchildren, would't leave the house, wouldn't get counselling, nothing. Just waited to die. So I took the "life does not end with Stage IV diagnosis" to mean that life goes on and we should live it while we can and not wait to die. I see posts from Stage IV people in other threads who are doing chemo and still working, raising their families, and doing fun things (like lunch with friends or concerts). So that's what it's about to me. Not thumbing one's nose in the spirit of "I'm ok and you're not". And not lacking in empathy for those who don't have it as good.
Having been raised to console friends in their time and need and celebrate their successes, I may have a different perspective. My friends are thrilled when something good happens for me - job, health, home, family related. And I'm thrilled for them. That said, when I'm in a crappy space, it's hard to be happy for anyone and it takes a lot of work to find joy about anything.
I've read on some other threads that people have a right to say what they think on these boards and that it's highly important to be able to be honest and safe. Ironically, some of the people who are the biggest advocate of this "right" are some of the same people who have told me to bugger off and that I'm not welcome because I'm stable and "don't get it".
So where is there a safe place for me to go? Where can I talk about how f--king terrified I am sometimes? About how much I wish I had someone to talk to about this disease? About how hard it is that my husband refuses to discuss it? How scared I am that decisions I make now will mean that beings who depend on me will suffer because I couldn't do what I promised? How hard I work at being "ok" and happy and fighting off depression. How freakin miserable it is to have arthritis/Femara pain and a (literally) 9 pound antique laptop that my office thinks is "fine" for me to haul six blocks to and from the rail station each day in gale force winds and horizontal rain and cold with every step a reminder that I have cancer and that's why I hurt?
Are these big issues compared to facing imminent death and leaving young children behind? Or knowing that your children are being bullied at school because you're sick? Or losing your hair and eyebrows to chemo? Hearing about progression and facing more radiation or change in treatment or chemo? Hell no. Not even close. No comparison whatsoever. My stuff is just bulls--t noise, and I know it.
However, I'm still human. I still need someplace where I can go and be safe in expressing myself. Where I can be me. Warts, grade school humour, cats, cancer, and all. A place where I am welcome. And not put down and criticised for being relatively healthy and having stupid little problems and trying to make people smile.
I don't want to chose sides, and I don't think I should have to. Why not? Because sledging (https://en.wikipedia.org/wiki/Sledging_(cricket)) isn't called for nor is nasty behaviour. To those who are dealing with much bigger issues than I am, my heart aches for you. How I wish we had a cure for one and all. It's getting closer, but I know it may not come in time for many of us (including me). I'm sad to not be in contact with people I've grown to "know" and care deeply for, but it would make me more sad to participate in a place where I'm making someone's already rotten day worse.
So, here's hoping this thread can be a place where we can express our joy, our sorrow, our fears, our good times, and our bad times. And celebrate one another's victories (yea Dune for no more nasty nodes!) and cry and hug one another when things are crap. And act with respect for one another.
Hugs to all,
Terre
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Terre,
Well said, my friend. There truly are no sides, in my mind. Time to put down swords.
I am usually not up so late, but man, I think that dermatologist dug out a lot of skin and it stings like all get out. Might have to take an Ativan.
Caryn
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Hope you feel better tomorrow and get some rest tonight, Caryn. Ouch! I had a mole taken out with a punch type device as they thought it might be "something". It wasn't anything but a mole. But I do remember it hurt like heck. So I'm guessing yours is probably similar. Not fun! Sorry you're dealing with this.
Terre
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Terre, thank you for your insight and we couldn't agree with you more!
This is a friendly reminder to all that if you disagree with a member or thread, we strongly encourage you to use our block member or block thread feature.
Also a reminder that these boards are meant as a safe, respectful place for all to post their thoughts, fears, opinions, etc. but it is NOT appropriate to be disrespectful, rude, or unwelcoming. If you do not get along with a member, again, use the block member feature.
Thank you all for continueing to keep BCO a safe place for all to share.
--The Mods
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Love your post Terre!
Caryn, hope your pain subsides & it turns out to be nothing.
Mods, thanks for keeping this a safe place for all of us to post.
Dee
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Thank you, Dee. It does feel better this morning. No morning shower however, which totally disrupts my morning routine. I guess I'll clean up my patio, get good and sweaty and relish the shower later this afternoon.
Caryn0 -
exbrnxgrl - Whether we have one met or many and/or progression or remission, we all have to be in this together. My life hasn't ended, and I have said to people that I wouldn't wish cancer on anyone, but I do wish that my friends could understand that feeling of "living like you were dying"(think Tim McGraw's song) because it has greatly changed me & definitely for the better (which I know to many is a horrible thing to say). I may be NED right now, but I'm waiting on my tumor markers this weekend to see if we need to scan again. I know that can change in the blink of an eye. That doesn't make what I face any less real than someone who has active cancer.
I think the best example of this comes from being with a friend just yesterday who has been told there is nothing left to do. After many years of treatment, she is out of options. We were shopping yesterday, and I was being a shopaholic b/c of my nerves from the morning's bloodwork. She of all people could have told me to shove off, but she completely understood and calmed me down instead (along with taking items out of my hand & not letting me buy them) She knows that there will be a day when I am in the same spot as her, and I just hope I handle it with half the grace that she has shown. Instead of crying more (which there has been a lot of ), we are making sure that her bucket list trip of going to Ireland happens next month. She wants to live as much and as normally as possible while she can. Who am I to take that away from her or any of us? We all have the right to live with this stupid disease the way that works best for us. It doesn't make the cancer any less or more real . Personally, I need this thread and have been thankful for it many times.
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Very well said, NBNotes. And so happy you're NED! As I recall, you've been through some rough treatments. Sending good thoughts and hugs for fantastic test results. Thank you for sharing the story of your friend. Really beautiful and moving. And also that you're a "nervous shopper" too - chocolate and retail therapy calm me down.
Caryn - glad you're feeling better today.
Dee - thanks for the kind words. Hope you're having a decent day.
Mods - thank you for the work you do and the kind words.
And to anyone who thinks I'm insensitive, etc., just remember, I'm an engineer. We're not always the most socially skilled animals on the planet. I don't know if anyone else reads Oliver Sacks' books, but I love them. He has terminal cancer and has written a moving and powerful article. It's a bit science-y, but worth the read. I can only hope that I can have the grace he has when my time comes.
http://www.nytimes.com/2015/07/26/opinion/my-periodic-table.html?smid=fb-share
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Terre, love your long post (and love all your posts), love your pictures, and love your efforts to smile.
Caryn, may your long-lasting NED be endless. Have no clue why some people got this angry.
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Thanks, Xavo! Love your posts too!
I currently have kittens playing a fascinating (to them) game under my nightgown (it's 6 am here) which involves batting at the fabric and an occasional claw to the shin. Little hoons. They do keep us smiling and laughing though.
Wishing everyone a lovely day!
Terre
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Terre and nbnotes, thank you for your wonderful posts! Beautiful expressions of how and why this thread is important to many. The stories you both shared are an example.
"Life Does Not End With A Stage IV Diagnosis"- no, it doesn't. We still have "our joy, our sorrow, our fears, our good times, and our bad times" and I will add our good selves and our not so good for whatever time we have left. I take this thread as a reminder to live the very best I can. To me this means not just in what activities I pursue but in my relationships and especially in my relationship to myself, and my inner life. Nbnotes, it's a courageous thing to say that you are the better for your dx (I hope I understand you correctly.) I feel that way and I know not everyone will agree or understand. and it will anger some. We do all experience this stupid disease differently and it may be that I have the luxury of doing well initially which brings a space to experience this 'live like you are dying" thing.
Terre, you may not think you are socially skilled but you are a skilled writer!
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Beautifully said Intothewoods - live like you're dying. That's what I try to do; and while I'd prefer not to have Stage IV BC, it has given me the kick in the rather ample behind to get my act together a bit more and to better appreciate what I have. And thank you for the nice compliment on my writing. I type really fast, so that helps. Thank you mom for insisting I take typing!
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