STEAM ROOM FOR ANGER
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Edj, I agree the words anxiety and fear do not convey this situation clearly. Anxiety and fear harass a person in day to day life and functioning, in their own skin. This is more an urgency that is going off like an air raid siren when I step back and view the totality of our life situation. You know those stories you hear where the fire department is called in to remove two old people from a home heaped with junk, falling down in ruin, the power and water having been cut off for lack of bill payment? Well that's us. Not that we're not paying our bills, we are. But slowly, over the years, this place has gotten out of hand. The mess builds up. The decay and upkeep have been let go. Now when I think I might want to spend 'fun' time with my husband, we are owned, lock, stock and barrel, by a place that is in desperate need of fixing up and cleaning up and the task is huge. HUGE! Major structures need to be torn down entirely, or rebuilt to a large degree. The truth is, we are tired. We are not in our 30s anymore. Nor are we in our 60s (close though!). And I see the day when our energy levels are even lower than they are now and then we really won't be able to deal with the task of getting out of this place. I want to sell. Start over with way less stuff. Build what we need and make it easy to maintain. We built this place in our 20s when all we had was energy and no kids. Now the kid is gone and so is the energy. This is not the place for people who want leisure time. I want leisure time. I do need Hub to buy in to a For Sale sign. And he's a solid NO on that. He says that change will be the end of him. Yeah, well, this is very quickly going to be the end of me because I do not feel I have the time to cajole and sweet talk (not my strong suit!) and manipulate him into cooperating. I want him to look at me, realize that some big shit has happened in my life, realize that this urgency to get life under control is not trivial or just because I want a 'change', but is of such serious magnitude that it's giving me an ulcer. Yes I need him to sign on. The other step is full on divorce - which somedays....... (thinking happy thoughts where life is neat, organized, clean and I don't have to make stinking supper every damn day!)
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runor - I understand what you're dealing with. Right down to wondering, only half jokingly, if your husband is stoned. Because I've seen my husband stoned, and honestly there's not much difference. His head is always in the clouds. And he also hates change and clings to status quo. Change comes, whether you want it to or not. All you can control is how ready you are, and how well you deal with it. I don't know how to explain this to my husband any better than that. I don't know what kind of changes you're looking to make in your life, but I feel like I have positioned myself to deal with whatever comes my way as best I can. I can at least deal with the immediate issue, and maybe a bunch of things will be left dangling, but I'll be able to cope. I've upped my life insurance as much as possible, signed up for long term care insurance when my company offered it without a health review, put through the paperwork to allow my husband access to my financial accounts if I'm incapacitated. I've familiarized myself with the ins and outs of my company's disability insurance and how they will handle my health and life insurance if I go on long term disability. Between all of that and the money I've saved, I think I can weather one hell of a storm if it comes.
He has done none of these things, nor has he been interested in any of the information on how or where to get access to any of my accounts if I kick the bucket. But I honestly don't care if he's unprepared for me to die; me being sick is my problem, me being dead is his. If he doesn't want to deal with it now, he can deal with it then. And he's eight years younger than me with good health (so far) so that day will almost certainly come. In the meantime, I'm planning a bucket list vacation every year and he can either come with me or not.
Interestingly, when I was discussing all the places on my bucket list, my husband was like "yeah, if your cancer comes back we should start crossing these trips off". WTF, if my cancer comes back it's going to be mets and it's going to be found because something stopped working because I'm not getting scans, and at that point my choice will be another round of treatment which will end when I die, or to just die. So there will be no fancy dive trips to the Galapagos or trekking across Bhutan with my broken bones/failing liver/remaining half a lung. He keeps acting like a health crisis is a distant possibility. No dude, the warning shots were already fired, we need to do this shit now! Because the next wave is going to be 10x worse than the first!
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Selling is a huge step. runor if you are truly feeling it, keep trying. Or you have been?
hapa, I feel for you too. WTF is wrong with these guys? Or is it folks that have never had a health crisis and they plain just don't get it!!!!
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Once a week or so I go over to the lung cancer forum. I knew I shouldn't have joined, but when you're looking for good info and people (like here) with real life experiences, you join. There's not a bunch of traffic there as you can imagine. Today, I just have to blow off somewhere. I know I should be trying to help another person, but I just have to say, WTF? A new lady comes in calling herself a co-survivor. What kind of term is this? Same as previvor, here. Please. Are we getting so dumb? Her sister has ovarian cancer and they just diagnosed lung mets, so of course she came to the lung cancer forum. She has since edited lung cancer out of her 1st post and I think she knows better now. She was asking about getting ready for chemo. Apparently her sister doesn't have a great diet. She lives 400 miles away, is reading Chris Beat Cancer and wants to go make her a salad -IF her sister will let her. She's seems convinced that getting her sister's diet better and boosting her immune system NOW she will be ready for the onslaught of drugs, and who knows, she will cure her!!! I kindly asked her to keep in mind she has hardly had time to recover from surgery and radiation, and that if there's no husband or good friend in town that she should have an advocate present. There is a biopsy coming up. I just pictured this woman alone with a stage IV diagnosis. Maybe she wants it that way, but it made me mad.
Anyway, wish I could go back to my "oblivious to cancer" days. Hope you all have a Happy Valentine's Day! Even if you want to bop your SO over the head with a hammer!
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I have mbc and my DH has a chronic health problem that worsened gradually and reduced his productivity severely. I was very frustrated with how things were falling down around us. Neither of us had the energy to work on keeping up the house and yard, or even finish the things we had intended to do when we moved in. I was very frustrated with living in the mess. It him too long to speak up or me too long to realize how burdened he was with financial worry. When it finally became clear, I knew I had to give up the home I loved for his sake and our sake. It was an absolutely exhausting (and expensive) process to ready the place for sale, get rid of stuff, show the place, find a new one, pack, move. But we landed in a good place and I love our new small house and garden. We are still not unpacked all the way and that is frustrating, but at least we are not as overwhelmed as before.
I don’t know exactly how my story applies to you, runor. But I would say it appears at this point you are on your own. Make a list and start doing the things that will make you feel better. Spend money or call in friends to help you. Just start. Sometimes guys will act when they see you have hired someone to do a job.
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Hapa, all the blood rushed to my feet when I read your Hub telling you that you'll get your bucket list done, "if your cancer comes back." (shaking head with mouth hanging open). My own has uttered these same cataclysmically stunned words too. As if to say, Once you have convinced me that you are well and truly dying, once I know this cancer is REAL and not something you have imagined, once I am certain that I really MUST respond to your health crisis, then and only then, with dragging reluctant feet, I will begrudgingly make some small change to accommodate you."
CTMB at this moment I really DO want to bash my SO over the head with a hammer, there are no less than 20 of the stupid things laying around the place. In keeping with the day I shall tie a lovely red bow around it before I crown his cranium with it.
Shetland, to the largest extent possible I have gotten my own life in order. Legal papers are in place. I need to write a list of where to find what papers and accounts and keys. But I have whittled my life down to a sensible amount so that anyone coming behind me to clean up my mess will not be overwhelmed or end up hating me. I know that my Hub worries about money too, he is the sole income earner. But sometimes I think worrying about money is a very handy way to not have to focus on anything else. Dude, there is a bigger picture here, we have been handed the memo. But this place... if something happened to him the first thing I would have to do is leave here. I CANNOT manage this infrastructure on my own. This winter snow clearing required a bulldozer! Not a quad with a blade, not a truck with a blade, not a skidsteer, a bloody bulldozer. Keeping the chimney clean and massive amounts of firewood would be beyond my ability. I split a lot of wood but I do not fall trees. I think we should be living in a place, in a situation, where the loss of one does not mean immediate relocation for the other. We need to lighten the load. He's so dug in.Thanks for letting me whine. This is an ongoing issue that he is digging in more staunchly over and I grow more frantic over. It ain't gonna end well.
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I think anyone that had cancer always has a fear of reoccurrence, I even went to ER once because I thought it spread to my brain. It cost a lot for my peace that time. So it is always lurking over us like a cloud, but the sun does shine through the clouds and I do find a calmness and joy then. As hard as going through cancer and treatments was, it was worse for me when I lost my husband. He died suddenly and unexpectedly on Sept 24, 2018. I am finally feeling like I am getting control of things. When he died, I wanted to move away and live in some place with a lot less work to do. My husband did so much, I felt like I wanted to go in a dark closet and hide. I started by getting rid of over clutter and junk and that jumpstarted me to feeling a bit of control. Runor, if your husband can't make a big change now, just start by cleaning out bit by bit, it may make you feel better and your husband will see some change can feel good.
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Runor. I got my stuff in order not because I feel my life may end soon but because I don't want t burden anyone with trying to figure my stuff out. I have done that including having a place set up for my beloved pet. I still need to do a big downsize with stuff. I have so many clothes that are out of style and too small that should be donated. My bro knows where everything is for me, mom and dad. We are all single and since he's 9 years younger than me, most likely I'll go before him as well as my parents.
What I'd do is make your changes. One thing I know is stubborn people don't usually budge, even if what you say makes sense. You can't control people so do what you need to do.
Ps. I haven't read beyond your first post on this so it may be moot.
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We’ve done the wills, cremation paid for. For YEARS I tried to get him to sell this place, clean out his tools. How many screwdriver and hammers does he need? What use is that table saw to a retired carpenter? But he wouldn’t. Unless I agreed to leave DD and the grands and move back north, he wouldn’t list this place. Nope, not moving back. Don’t want any part of his family, weather, any of it.
So now he has extensive bone Mets. He’s thinking of going into palliative care. He can’t take the trash out, much less cut the grass. But it’s ALL my fault because I wouldn’t move back north. I can barely keep up with the house. I guess DD will just be stuck with this. If he goes first, I’m outta here. Into a small pet friendly apt
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I just came across a FB post from a friend that kind of steamed me. I know she meant well (and she has had breast cancer), but I seriously hate this type of "post this to show how much you care" barf-inducing drivel. Here's the post:
"The "C" word is a hard pill to swallow!! I'm afraid that I have some very personal reasons for this post. It is in the most difficult moments of life you realize who your real family, friends or people are that really have your back. People's true colors come out when the attention isn't on them. Unfortunately, some friends are going to press "like", but not really read it because it takes time to read this statement and when they see that it is long, they skip it.
Now I look at those who take the time to read this post until the end ..... (I think I will discover that 5 maybe 6 will. Cancer is very invasive and harmful, even after the end of treatment your body is still struggling to restore the damage caused by radiation/chemotherapy. It is a very long process. (100% true)
Please, in honor of a family member, a friend who died, is still fighting cancer or even had cancer but beat it, Copy and paste (don't just share) on your page.
So I can find out who read it,
please write "done" so we can see together the power of Unity !!!To all those who have lost someone or are in the battle against cancer, here's a hug for each and every one of you and your loved ones
"Here was the opening paragraph I added:
"A friend asked that her FB friends copy and post this. I hate these modern versions of the highly annoying chain letter, even if the content is purportedly for a nice reason. Here's my request. Do not copy and paste this. If you know someone with cancer, reach out to them instead of posting some impersonal drivel written by a stranger. Ask the person with cancer what specifically you can do for them, or just give them some of your time. Let them know you care about them. If you are in the same area, offer rides or ask if they need anything practical. Or ask if they want to go out, or just want you to visit and hang out so they don't have to go through their crap journey alone. If you don't live nearby, send texts! Send dumb jokes! Cancer patients still have a sense of humor, don't be afraid to have fun together. And if you can, donate to a reputable cancer organization that is actively working for better treatments or a cure, or that offsets the horrendous medical and pharmaceutical charges of patients. And vote for candidates who will tackle our dreadful medical care system that is only for the wealthiest citizens".
I hope I didn't hurt my friend's feelings, but I've seen too damn many dumb equivalents of "Honk if you hate cancer" useless crap.
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Alice, there were a lot of those floating around right after I had ovarian cancer (and they also had a line in them about how shocked you must be about how appalling the sick person looked) and I made it a point to tell people that I had cancer and I thought they were stupid and they didn’t make me fell “supported” at all. Good for you
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Alice, your answer is what I want to copy and paste next time I get one of these obnoxious posts.
I never know what to do when I get them; I certainly don't do the requested copy and paste, because it's such a meaningless gesture - it's all about 'how to make yourself feel good and feel like you care without actually doing anything'. You've provided the perfect comeback, and a way to turn something useless into something helpful.
Have you had any response to your post? Have you been unfriended by your FB friend?
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Alice, it was this kind of junk, along w mean spirited things and all the political hacking that made me deactivate my FB account. I found myself getting so pissed and finally realized I was making myself angry by continuing to read this BS. I haven’t missed it.....anything I really need to know gets to me by text or phone call. Kudos to you for your response!
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oh Alice, I SO agree! I hate that crap
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Alice, your response was perfect. I love that you gave concrete examples for people who aren't sure what to do. I used to be in the “unsure" group until it happened to me. Now I realize how much even a simple email or text can uplift a bad day.
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Alice - a wonderful response. I never respond to the similar posts I receive, but I recently received one from my neighbor who I see frequently out and about, her usual FB posts are about her travels and hobbies, so this was unusual and it's wording made me wonder whether she had been diagnosed and was feeling neglected. So when I next saw her husband I asked whether she was ok based on her recent FB post. He just rolled his eyes, apparently having received other expressions of concern about this out of character post. This incident just confirms the mindless "sharing" that is going on and you are right, it is as meaningless as "Honk if you hate cancer"
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Thanks, everyone. I haven't been unfriended by the original poster. She's a very sweet woman who I think was trying to offer support to her friends and family, but those generic pass-alongs really drive me bonkers. One of my hubby's nephews just had colon cancer surgery, so I wasn't in the mood for that kind of fluff. And he wouldn't have been happy to see it, since he's even snarkier than I am.
Hey, at least it wasn't one of the even more obnoxious chain posts that start out with an insult: "I'll bet none of you care enough to share this post about the debilitating agony of ingrown thumbnails! If you don't post this on your wall, you are a horrible human!" One of these days, they're gonna get a huge EFF YOU in their comments.
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So the after chemo effects I fear are getting worse. Hubs abdominal pain seems to get worse each time, and I can't figure out how to help him. It was suggested that we take Claritin before getting Neulasta, which we do, and alternate Advil/Tylenol. He will also take an occasional Oxycodone. This does help the joint aches, but this pain in his lower belly (although not constant) gets pretty intense. I resorted to almost shoving the CBD gummies down his throat. He finally said, yes I feel more relaxed. Well, that's something. I need to find a liquid form. Husband not a fan of taking all these pills. I think it's a fear of getting backed up. I did get him to take Miralax, I also have prune juice on hand and that seemed to provide him a bit of relief. But, then it returns. Our daughter came home late yesterday and stayed since she if off today. She thinks its the Tecentriq. I was glad she came when I finally fell asleep last night I didn't hear a thing until 6am this morning. Hoping every day he gets a little better now. This sucks.
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Alice, that was an outstanding piece of writing and you are bang on! It does not matter how much I like a FB friend, if they ever post those "do this or else" type posts, I never, and I mean NEVER copy and paste or share or whatever they ask. I don't like having my arm twisted behind my back by anyone for any reason, even if they are being all nice and fluffy while they do it.
Ctmb...I don't know how you keep it together. It sounds like you have been needing a good night's sleep. It is destroying to watch a loved one suffer and not be able to do a damn thing to help. I hope he finds something to ease the gut ache. Hope you can get the rest you need to deal with this all.0 -
Went home for lunch. He's in bed. Not functional. Glad our daughter is there with him. Son is also around most days/nights although he can't stand to see him in pain, and I can't stand to see his eyes filled with tears every now and then. Awful, dreadful 4 or 5 days! Can only pray tomorrow will be better.
I don't have a facebook account. Never did. No time.
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ctmb, I did a search on BCO for Tecentriq and there were some posts, threads. Maybe you can find some info there. Look at stage IV threads here? Just a thought. Hard to see someone suffer. Call his MO? They need to be responsible for the side effects their drugs cause. But you will probably just hear the same old crap. Small meals, no dairy, blah, blah, blah. What about the BRAT diet? Just thought of that one.
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Thank you jaycee. I have searched this site I got some good tips in a few of the chemo threads. Not so much about this immunotherapy stuff. Best I can figure is maybe it's inflammation of the gi tract. His latest Ct scan does not show any active diverticulitis. I will talk to him later and see how he is, and if he would like me to call the hot line. I try to avoid that if possible (and also by reading stage IV posts) because some symptoms that get reported could land you a trip to the hospital.
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I especially don't want to be at work today so I'm not really working much this afternoon. I just want to get home and see that the Mr. is doing better today. I called him once today, he didn't answer. Not unusual, we are not clinging needing people that have to be in contact during the day.
I was back over on the lung cancer forum and the lady came back to thank a few posters for their well wishes and she is still writing about her sisters' diet. I just want to scream!!! WTF lady, your sisters' diet didn't cause her cancer!!! You don't even know what type of cancer she has!! But go on, you'll fix her with that diet by God! I'll be staying out of that topic from now on.
I used to be on the alzheimer's site for caregiving support and those folks are quite helpful. I tried to stick around there and help new comers that are absolutely in a querry, helpless, and oblivious to this condition. Most people were appreciative of the tips like the #1 tip in dealing with a demented person is to NOT try and reason with them. You will never win, ever. Validate their feelings and divert. It takes a lot of practice, as does telling a person with this disease little fibs to get them to a Dr., take away their car, their home, their checkbook, whatever. Anyway, I found myself being angry with some (not all) total strangers that were asking for help and then not listening. On the other hand though, it was quite gratifying when someone thanked you, or you could see the light bulb go off and they had that ah ha moment. I don't go there much if at all now. If there is ever a disease worse than cancer, it's that one. Horrid, those poor people. I do hope I'm dead long before any of that shit starts to go wrong!
Anyway, glad I didn't post angry at any strangers on the internet today!
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ctmbsikia
My aunt developed a non-Alzheimer's dementia. My mother (her sister-in-law, and the only other one left of their generation) was always condescendingly arguing with her, as in "Oh, no, Hazel, you're remembering it wrong" or "Oh, no, Hazel, THAT'S not how you do it." Ugh. I loved my mom, but I wanted to kick her in the shins when she did that. I don't know exactly what kind of dementia my aunt had, but it cruelly kept her just aware that something was very wrong, at least in the earlier stages. She'd be talking sort of okay, then get this wounded look and say "I don't have words." Heartbreaking. Plus there were a lot of delusional moments, like answering the door naked, and thinking the neighbor children had killed someone.
On a related note, my niece is working at a major University as a biologist on Alzheimer's research. She's co-authored at least one published paper. I'm very proud of her.
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Dementia, motor neuron diseases are THE worst.
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Alice, I'd be very proud too.
My Mom was a diabetic and I have thought that maybe all the insulin had some effect on her brain. Her dementia was unspecified. She had zero short term memory. So short that at breakfast one morning I noticed she had put eye shadow on one eye, but not the other. My Dad was an amazing human being and I think maybe the caregiving for her (which is years and years for most!) caused his coronary. Mom would ask what the temperature outside was every minute of her waking hours. It was hard not to scream, but she couldn't help it. I had a break through one day when she asked me and I replied, "350 degrees for 45 minutes!" This response got through and she would ask, "Did I just ask you that?" I would tell her yes, about a thousand times, but it's OK Mom, I love you, smile and hug her because that's all you could do. Make sure they are safe and be as reassuring as one can while your own heart is being ripped out of your chest.
I'll tell you about mother in law a little later. I should really try and work today! LOL
Hubs is on the upswing, doing much better this morning. Thank you Jesus!
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OK will save the mother in law story for another day.
Just got a text and I'm having another one of those WTF were you thinking moments!!! I so want to reply to this text, but I will not. Thank you for letting me share.
There are 6 of us friends from high school and we still get together every 3 months or so to keep up. We met in January last and our one friend announced she sold her house and is moving to FL. She is going to stay a friends place who she has visited several times until she finds a place of her own, and she even managed to land a job down there before leaving. I felt good about that, was glad to see her off, and we were looking forwarding to planning our 60th birthday celebrations in a couple years in Florida. Not so sure that will ever happen. Today, the text says: "I lost my job because I jokingly tapped a girl on the ass. What has this world come to." She started this job on the 10th of Feb. She has had countless jobs, has moved around a bit, and I fear she is perhaps going to have some sort of mental health crisis. Knowing her, this screams to me that she is trying to hard to make a friend and didn't properly access this person. I don't blame this person a bit of course, my friend can come across as a little, well, crazy. Just shaking my head.
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Ouch. What a bad situation for everyone involved. And it sounds like your friend might really need to be employed so she'll have health insurance to help with her problems.
But I'm glad to hear your husband is having a better day.
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Alice I trust you will tell me if I become manic from what you see from me here. My son was here tonight and said to me mom you seem tense like you want to snap. I unloaded 4 bottles of wine which should last me thru the weekend with sharing. All of our phones are always ringing. Last night we had another life long friend here with her daughter who is so cute - we tried fixing These two up but no luck. Another friend loaded us up on spaghetti and meatballs which I do so appreciate. The neighbor kid came in with food tonight. He is a senior in high school. His mom has a stage 4 ovarian cancer. My husband works with Mexican immigrants and they have come with oil, bibles, hats for treatment It’s so overwhelming! My daughter calls and just like best friends she tells me about her day and I tell her about mine. She is a teacher. Masters in elementary education and is a reading specialist Basically she is data collector for admin and still worKing on groups to get these kids to read! But still a teacher at ❤️ I can’t even imagine what this is doing to her.
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Ctmb, relieved to hear that Hub is doing a bit better. That was a hard place to be in. Hope he remains comfortable, for his sake and for yours.
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