My Husband, My Life, My Love, My Family, My Cancer
Comments
-
I love this forum, Y’all inspire me, give me hope, I for one have not been staged, no scans, MRIs, 2 large masses, several nodes involved, TCHP chemo, surgery in February, this is my life now, I need you All, your stories,humor, real life stuff, keep it coming,
Cancer Sucks, and this Bitch needs this group!!!
0 -
arista, thank you
0 -
Runor, stay here with us. There are no compllications and everyone is welcome. Before I was official Stage IV I did not post on boards marked Stage IV. I did read them voraciously however because I was afraid I would become Stage IV.
That does not minimize the hurt someone will feel if they have been freely posting to a board for months because they know other posters on the thread. If someone is posting in the wrong location, it needs to be addressed right away. That is better than someone making relationships and offering comfort for months and then have it yanked out.
I also don't think this thread needs to continue this debate for another thread. It can cause stress and people continuing to belabor a point that belongs elsewhere. In the end, it is up to the mods to keep up on who is posting. The other option if you know people over there is to remove your dx in the signature line and keep your stage quiet. Don't like that but don't like people being excluded. Address them if they are posting inappropriate things.
This is my own opinion. I also don't like BCO feeling like it is not a comforting place to be I also don't want the debate here because this thread is open to all and is a living room. Leave it on the thread it originated on. This is all I will say on the matter.
On a lighter note, I was very proud of myself today. It won't sound super interesting, but it made me happy. It has been freezing rain and our sidewalks are covered in ice. I needed milk and decided to test myself and my traction cleats to the test. I brought two pairs of slip on sneakers, put cleats on one pair and brought the other in another bag. Put the pair without the cleats on easily and went through the store to grab my milk (and chocolate). When I left, I switched shoes again and walked home. Did not slip and fall at all, went carefully and felt very good on my feet. Shows me I don't need to be isolated and can get around safely. The traction cleats are difficult to put on and take off so that is the reason for two pairs of slip on shoes.
0 -
Artista, as for the cost of making changes to a site, I don't know anything about that. But I have to wonder if this site does not generate money in some way? There is posted near the top of the page an invite to watch a video series. It costs money to produce videos. Are those videos by BCO? If they are, who is funding them? I don't know the answers. But I have a wee smidge of suspicion that the 'we can't afford to make changes' might be a little bit of BS. It is an easy answer when you're not really motivated to make changes.
Am I suggesting that stage 4 people should not be posting anywhere else on this site? Nope. Not even close. I am suggesting that there should be at least ONE place they can go that is accessible only to them. Password protected or something like that. As for thinking anyone can lie to get in, that is 100% possible now. We have no way of knowing if the people who say they are stage 4, are. For all we know the person who complained about me on Death and Dying might not be stage 4 ! There is, at this point, no way of knowing!
I agree with you Artista that there is MUCH to be gained by reading stage 4 only threads. But there is also much to be gained by reading ALL the threads in this site. Is a tragic state of health the same as attaining some mystical level of spiritual development? This is muddy thinking. Stage 4 is a TRAGEDY. I don't know how people stagger on. But what happened to me, which was NOT stage 4, left me to stagger on. We are ALL EQUALLY STAGGERED by this disease. But we conflate and confuse this into some sort of weird class system. I followed Lita as she declined. What a woman! She did not take her experiences into an exclusionary domain. She stayed out in the open. Raw and honest. Which was an offering to the rest of us. An act of incredible generosity and trust. She took my breath away. I feel that if that level of humanity is not in your heart, then you definitely need to be posting on a thread that cannot be seen by the rest of humanity. A private, INVISIBLE, members only thread.
I guess I can't be more plain than to say that this type of behaviour, to be with us but special and separate from us, does not square with my world view. But if it's something that people want and need, they should be allowed to have to it, separate and away from the sight of the rest of us.
0 -
I think you made a very good point Mara. One thread has nothing to do with the other and a decision has already been made by the moderators about this one. I don't agree at all with some things said here but that doesn't mean I feel like continuing the conversation. Debating on a forum is almost never productive in my experience anyway. I hope runor stays in conversations with us here. What I love about this thread and a few others I participate in is that the focus is on how we're living at the moment. It's what I treasure about my face-to-face group as well. We experience death frequently in our membership but the focus is in the honoring of that person and the living we are doing.
I missed my granddaughter's soccer game today becuase of this ice storm we're having. I can't even get across the driveway to my car so this is not happening. What kind of contraption did you get for your shoes? My back and hip are feeling pretty gross so I'm not really walking anywhere right now anyway but it would be good to know what works. I had some cleat type things about five years ago for my running shoes - they were called Traxx or something. I will have to go dig those puppies out!!
Today though, a little reading, watching The Crown and dozing off to the sound of freezing rain out my window.
0 -
Runor, some early stage people do not feel 'staggered' the same way as you do. I certainly don't. I would never say I am equally staggered as someone in stage 4, who would probably give their right arm to have my outcome: feeling good, NED, unmedicated. Yes, I have a risk hanging over my head, but It's completely different to have a 10% or a 30% chance of recurrence/progression vs BEING in that place where you have progressed. Yes, I am still in the prime recurrence window for TNBC and I had an advanced BC and I can easily become stage 4 in this window. So of course I still have the chill of fear but I also know I am in the best position I could possibly be in, given having had cancer at all, and that is something good not everyone can say.
If you are happy you are not stage 4, and/or if you dread becoming stage 4, then that by itself underlines the real difference of not being there.
Also this is not the first rodeo of people having complained. I posted on stage 4 threads *without consciousness* prior to the first complaints. But I have stopped... the complaints make sense to me.
What does not make sense is the prior system of automatically opening all stage 4 threads in "Stage 4 ONLY." Now, an option exists that is Stage 4 OPEN, which is a good change. I suggested a color code that would emphasize the "ONLY" forum when this problem came up before. But then the main threads that interested me were this one and FenBen and both were opened. I have made mistakes twice posting on COC thread thinking it was FenBen, due to similar conversations/members on both, but I caught the error and deleted the posts. (That thread is the kind that would make sense to open because people who know about COC are not all stage 4. But it's the originator's choice.)
I also think the structure of the site is unhelpful, as MANY conversations i click on by topic-- I never even look to see what forum it is in... That bug/ feature is what leads people who are not stage 4 into the forum, and then they may join in a conversation they have been following while not really knowing what forum they are in.
Sometimes too a thread is opened in stage 4 forum but the topic is something like "supplements" and there are non-stage-4 people with relevant info to share who click. That's an innocent mistake. In that case, it seems like the best solution is to PM the poster you are responding to or PM the person who started the thread to see if they would be ok opening it.
0 -
Ok. I have been reading the back and forth of this conversation. I do not know the answer. But I think we need to move on. And, just to be clear, I was not the one who gripped about Runor posting, or for that matter, anyone else posting on Stage 4 Only sites if they are not Stage 4.
***But... I guess I really do not understand why someone not Stage 4, MBC, with mets whatever you call it, would want to post on those Threads anyway.**** For example, I do not have brain mets. I did read Lita's posts on that Thread, to follow her. But I do not post on the Brain Mets Thread- I do not have brain mets. I posted once to Mike on the Fenben Thread because of his heartwrenching posts about his wife's health decline. But otherwise I don't post there because I am not using Fenben. I do not post on the Young Women with BC Thread because I am not young. LOL. See what I mean. I have read about Piqray and Xeloda on those Threads because I MAY be on them in the future, but I don't visit those Threads regularly or post there since I am not on those treatments currently. I post on Ibrance Thread---I am on Ibrance. I post on the Liver Met Thread--- I have liver mets. I post on the Bone Mets Thread---I have bone mets. Etc...
Some one commented (I cannot remember who and will lose my spot if I turn back to previous page) about non- Stage 4 following Stage 4 Threads because of a loved one with Stage 4. Isn't there a Thread specifically for family members? Ok, if you want to read the posts of the ones dealing with Stage 4, fine. It is, as of now, public info. But I do think that those Stage 4 Only (with mets, MBC) should be for Stage 4 folks and the issues specific to them. Because they do have specific issues--- current and future treatment options, scan protocols and our latest results and when progression comes, dealing with a chronic condition, etc that is specific to Stage 4 and the ongoing treatments we have to deal with.
I do not know the answer to this. I do not want to be segregated per se. I do like the idea of a Private, Password protected, area. Never really liked the idea someone out there can Google and read my comments. But I think we need to respect each other and let common sense guide you before you post.
0 -
Moomala - was just being my lurky self and noticed your question they are called Yak trax and sell on Amazon. They have different types i.e. some for ice some for just snow and some for running on snow and ice although I can't figure out why anyone would want to run. They are actually really good - walked on an icy ramp no problem.
Haven't been posting but have been checking in on your fabulous selves. I am sorry for all the tension and up roar that it going on right now. I hope it passes quickly. Runor have to say absolutely love when you post (the one about you and your husband and sex was absolutely hysterical please tell me you had a shotgun in your lap for the last comment to you DH).
Mara you're in London - kudos for going out, I'm in Toronto and the weather is awful and I think for now London is worse. Stay warm and safe.
My daughter's new kitten stepped on her computer and turned on Siri - my daughter said stupid cat and siri responded "I am sorry there are no listings for stupid cat" my funny for the day.
I am off to feed my horses, they really don't like the storm so are all tucked into their stalls making lots of poop for me to shovel. I wish you all a safe happy day with minimal side effects, pain and stressors.
BTW thanks Mel for letting stop by your lovely living room - such a warm welcoming safe place. How are you doing. (I was happy to see the adderal gave you the energy you so richly deserve.)
Hugs to all
0 -
Hi GiddyUp - I'm just across the lake in western new york and we must be getting the same weather. Waving madly and it's always so nice to see you here! Running used to be a lot more fun than it would be now. My orthopedist would have an absolute cow if I did. But - I used to get up at 5:15 AM and run 5K through my little village nearly every morning. Oh my I so loved the quiet time and just being out when everyone else seemed to still be in bed. Now and then running into wildlife you'd never expect to see in a village like this one. After running a few events I did indeed pick up a pair of the yak trax for my shoes so that I could go out all winter. I still have all the gear for running and skiing. I don't miss skiing that much but running I really miss a lot. I don't think it would have the same attraction for me later in the day - there was something about that early morning time alone in the streets.
At least the poop's all in once place in the stalls? My dog is refusing to go outside today. She's got to be bursting but she will not go out nope.
0 -
Thanks Giddyupgirl. I felt terribly clever using two pairs of slip on shoes since the traction cleats are impossible to put on and take off easily. Made the shop easier and made me feel better getting around on the ice. I live on a side street so I know that my sidewalks will not get sanded first. The roads are not even in great shape. I did see a couple of people jogging so I am thinking they must have cleats on their shoes No way anyone would have stayed on their fee otherwise. I plan to practice walking after a big snowfall as well in boots. Cleats don't really work then but I do have good treads on both sets of boots. Probably would bring along shoes anyway or wear my more heavy duty cleats. I just wanted to make sure it would not be difficult for me to get out and around since when I do have medical appointments, I am on a bus. None of the routes I take are very close to my place. Usually takes between 10 and 15 minutes to get to them. Figure it's better to figure it out now than have to figure it out on appointment day. Cannot afford or want to take Uber all the time.
0 -
Hi Moomala - waving right back at you. Its ok about your dog ours doesn't even want to pee outside (and he's 110lbs) but inside he thinks he's a teenie weenie puppy and shouldn't have to stand in the snow and ice. I was never much of a runner my kids tell me I look silly when I run so instead I sit on a horse and let it run. Yes the poop is all in one place or rather all 14 stalls. My early morning peace is my barn when its only me and my horses - I love the quiet and watching them play outside. But they say we should exercise and weight lift for bone density so I will think that the ponies want to contribute to my health. I hope you and your family had a lovely Thanksgiving despite the storm coming in. Stay warm on this chilly day.
0 -
In truth, it is what it is and while I can shake my fist at the sky (which I often do) the world continues to revolve.
I must say though that I did not purposely go hunting for threads that I am banned from posting in. I have a list of favorties and when I log in to BCO those pages pop up and I check out the new posts that have happened since I last checked in. I literally NEVER read the topic heading and especially not the fine print that says Stage 4 only. It simply was not on my radar. So I didn't barge through the fence on purpose. Sort of just blundered through it forgetting it was there. (if it was moved to where no one could trip on it, accidentally or otherwise, it would be better)
0 -
Hi Mara - the two pair of shoes is super smart. I will steal that idea as I am in and out often and walking in the house with Yak Traks is dumb but I hate taking them on and off. And you're right it is smart to plan ahead. Inevitably when you don't something goes awry and you really don't have the time to figure it out in the moment. Totally get not wanting to rely all the time on an Uber. Stay toasty -- as the song says "the weather outside is frightful"
0 -
Moomala, sorry, I missed the fact you were wondering what I use. I have more than one form of cleats.
I use this type of cleat for sneakers or boots that are not overly wide.
ICETRAX Pro Winter Ice Grips for Shoes and Boots - Ice Cleats for Snow and Ice, StayON Toe, Reflective Heel
I use the tungsten version. I also put them on my shoes BEFORE leaving. I would recommend to take a 2nd pair of shoes if you are walking around anywhere else. If just going for a regular walk, obviously you can leave them on.
pulled from amazon.com
Ergodyne TREX 6315 Strap-On Heel Traction Cleat Grips Ice and Snow, Easily Attaches Over Heel of Shoe/Boot with Steel Plate to Provide Anti-Slip Solution, Medium/ Large
Sorry was unable to link, every time I try to select insert link, the stupid page moves up and down on me.
I also have these exact ones in case I am simply walk and want to wear boots instead of shoes. They also should be attached before leaving. I stand on tiptoe if still walking around the house. Used the M/L size. They have sharper teeth but give the option of extra control with being only heel only. Also from amazon.com. Same tip, I would bring slip on shoes if you are walking around a mall, medical centre etc. Just is easier than trying to get them on and off. I tried getting them on and off but I still had to make many adjustments.
0 -
Actually Runor I ended up here by accident and posted not really thinking of the stage 4 thing. The women here are so darn inspiring and interesting and welcoming that I didn't even think. Which to be fair, friends and family often tell me that I should think before I act - really have to work on that. By the way you didn't tell me if you had a shotgun on your lap.
0 -
Runor, I do the same thing when I come to BCO. I go by my favourites and that is it. I don't read other posts except for the stuff I am interested in. I will take note in the future that if I am looking in different places, that I know where I am allowed and not as well as there are threads for various earlier stages 1, 2, and 3 and those not yet diagnosed.
As far as I am concerned, I am sorry this made you feel badly. This site should be a reassuring place no matter what, even with differing views. I want you to know I value your insight and thoughtfulness greatly and appreciate you being here. That is all that matters to me and I don't want anything else to make you feel badly.
0 -
Giddyup, I honestly am glad you stumbled here. It's always nice to see another Canadian here, especially one not so far away.
0 -
What helped me in my early days here was to take note on what forum a post was on. Most of the time I just go to my favorites but we can see what forum that thread is on. I've inadvertently posted there before. So I trained my brain to look for Stage 4 ONLY before I post. That stage 4 ONLY forum has been there for at least as long as I've been here and seems to work well for most or a lot more folks there would be speaking up imo.
0 -
Would more folks be speaking up? Look what happens when you do.
GiddyupGirl, I'm a redneck Canadian living in the backwoods rural area of rugged mountains. I never go far without a shotgun. Good way to be eaten by a bear or trampled by a moose. Moose can be especially ornery!
0 -
If it's important then yes imo. That's how dialogues are created. And with it comes conflict and differing opinions that in the end ends up being agree to disagree. This technically isn't our board. People created this for us. We don't have to pay to participate. If we did it would be our board and we'd have a say in the rules.
And I and many of us saw the mess that imploded during that time fall 2015 or 2016 when mods were seeking feedback. Too many people with too many different opinions. So they and eventually we decided to leave it, or leave it. Some did. If there are enough stage 4 folks who want a password area then they'd ban together and pm the mods. That's between them.
0 -
Runor - I think I love you. I am a gun toting canadian girl living in the boonies with the coyotes and bears oh my sadly no moose just deer. Though I visited Newfoundland and wow their moose are really cranky and I wasn't allowed to take my 22. However I have some rogue beavers I can send you, by the way their personalities are not so bright and shiny and their teeth are really big.
0 -
Mara, I am still learning to use the website. I am so glad that I found your reply now. I am depressed this morning because I heard with whole brain radiation, life can only extend 3-6 months. But you’re three years . That give me hope.
0 -
How much snow are you guys getting in Western NY/southern Canada? Also, moomala, I've always wanted to drive around up there and see what those old industrial towns and surrounding areas look like, or the Adirondacks and lakes. I can't be bothered about NYC, but anywhere else in New York seems like it could be really pretty and worth a drive.
Quiet weekend here - OH did Ikea yesterday and soothed his need to have those darn Swedish candle lights in every window for the holidays. Today we went to the pub so I could get out a bit and walk more and I even walked without crutches for a good 30 yards. I mean last weekend I was happy walking 10 minutes WITH crutches. We talked about going to his hometown near Stockholm for Midsommar next June, to spend some time with friends and family. It felt nice to think about plans that far out and not panic and think doom instead.
He turned on the Packers - Giants game for me while he finished cleaning downstairs and Ive never been so happy to see mobile phone, car, and pharmaceutical drug ads. Its just like being at home, even better that the stream he found is from the Green Bay station.
Hope folks have a good start to the week!
0 -
Micmel, I am with you. I understand you. I married to my love in China in 2014 . I was 25. Now am 30 . We traveled together many places in Asian and the US. We are best friends . I am so sad and depressed that life become like this. I don’t want to leave him but I feel I don’t have that much hope anymore. My condition is very bad. am sorry my post isn’t very encouraging. Everyday I am looking for hope to live. It’s so hard
0 -
Runor, I love the imagery of you and your shotgun. Reminds me of my Uncle who used to hunt as well. I have never hunted but know in certain places, it is very commonplace.
Sondra F, we have not had any snow here, just freezing rain that coated the sidewalks and roads with a fair bit of ice. Would prefer a snow dumping to this I think as it is easier for me to walk through BUT I also am not required to shovel it. My traction cleats worked well on the ice though.
0 -
Malinda, when I was diagnosed with my brain met, I was told to immediately make out my final plans like hospice, DNR etc. That indeed was 2016. I was not supposed to still be here but here I am 3 years on.
Don't let a doctor tell you how long you have left. Live each day one at a time and go with how you feel that day. You should talk with family and health care providers about what you want to do if you cannot do things for yourself and have a plan for when you eventually need hospice care and funereal arrangements. Don't let what I am telling you scare you, but as soon as you are diagnosed Stage IV, t hese are plans that should be in place to be easier on you and your family and service people. Just because you make these plans does NOT MEAN YOU ARE IMMEDIATELY going to die. Again, this just makes life easier to have will planning, and the above all mapped out. Then you focus on living your life.
Doctors do not have a crystal ball on how long we have. Do not take the 3 to 6 months given you and say that is it. In truth, none of us know how long we have. The best we can do is live our lives as normally as possible. Watch our favourite TV or movies, go out with friends, have visits with family. Don't look to the future and don't spend all your time in Cancerland. Get a social worker, keep talking to use here when needed and give yourself permission to live. It takes a long time to wrap your mind around this but you can do it.
I enjoy walking a lot. Once I got all of my plans out of the way and will made, I have focused on my own life and what brings me joy. Star Wars, Disney movies and walking to music makes me happy. Find something that makes you happy and keep doing it. Talk out the scared feelings with professionals and here as well as family and friends and keep doing whatever feels normal. Do not think of yourself as dying, you like all of us are living with cancer. You can have a great life, even with cancer.
Much love and hugs to you
0 -
well now, it looks like Dorothy and her tornado touched down in my quiet little living room. It’s funny how this topic rears it’s head every now and then. I strongly suggest we drop it., this thread is for everyone. I value and care for each and every poster that takes the time to share with us here. I am envious of people who are not stage four. I can’t lie, but it doesn’t mean that they offer less value or another view I may not be able to see through my fog of life. I think we are all here for the same reason. Sisterhood. So yes we build strong friendships (ie, mine with Runor) and then we all just become women to me. I respect ones need to post on the stage only 4 threads. To be amongst others in the same boat per say. Someone said. I don’t post in Brain mets =because I don’t have them. Agreed , I feel the same way. But I read and care about those women who do. I have a few bone mets but I still don’t post there. I picked my home and made it what I wanted. Luckily you all seem to have needed this living room as well. I understand people feel certain ways and there are never easy answers, or the problem wouldn't keep occurring. It seems to me that only one being singled out is the same person every time, while others continue to post where they feel they want. To me this seems more like a personal issue that someone seems to have with the witty, funny, hilarious, always on point posts that Runor does. Maybe you’re just too damn funny for some. So make this your home. Like I have. I think you see you’re loved here. No matter what. I am made of unconditional cloth. I love wholly and with all I can offer. I don’t pick and choose and want to make anyone feel not included or cared for. Someone has a hardon for you my dear. Whoever that may be, might need to take a self check of themselves and realize sisterhood wasn’t built in one posting.
0 -
Well said Mel.
0 -
Good idea Mel. Something I said in this thread was quoted in another thread causing more conversation there - without asking me if that was okay to do. I'm not feeling at all comfortable now. It makes me feel vulnerable but especially a little hurt becuase I explained where my comment was coming from and apologized for bringing some other anger I was having into the conversation after our community's loss of a 9 year old child and her babysitter this past week. My mom always says that my mouth doesn't always behave. That is true. But I always re-think and explain and make it right. Which I did. I hate when people do this on forums. It's the single most uncool thing to do but - a good reminder. Be careful what you share.
0 -
Hugs for all my sisters of all stages.
This is my on call weekend for work. Spent most of yesterday and all night at work. I just woke up at 3 pm. This is going mess with my already messed up sleep schedule. Thankfully, I am off tomorrow. I am however still on call until 2:30 pm tomorrow. How do I distinguish between fatigue, laziness, and just plain tired? 😕
0
