STEAM ROOM FOR ANGER

Lita57

Happy Cancerversary to me!!!

It's been three miserable years now (4/14/16 - 4/14/19) since Dx.

How come I'm not happy? I should be thrilled to still be alive, but it's getting harder and harder to walk or even hoist myself up out of a chair.

I have Fred Flintstone Feet, Tree Stump Calves, and Stovepipe Thighs, all thanks to Gemzar IV chemo edema, which I'm told will NEVER go away now that my lymphatic system has been wrecked by Tx. I'm tired ALL THE TIME, but I don't sleep well. I can't drive anymore, and I can only read for about 10-15 minutes b4 everything becomes a blur. If I bend over to try and pick something up, I almost pass out. Oh, and those lovely thrombocytopenia reddish/purple blotches all over my arms, chest, and now they've spread to my legs so I have to keep covered up.

Just delightful.

I'm getting sick of this, and part of me is actually praying for a quick transition. I have my Advance Directive and DNR in place. My "Death Folder" is complete, urn for ashes is purchased as well as niche at the mausoleum.

More happy days ahead...

L

AliceBastable

Lita57, I am so sorry that cancer and the treatments have, and continue, to beat the crap out of you. It's not fair that you are so quick to offer support and uplift to others here, but we can't do anything much for you. All I can offer right now is some natural Bluebell beauty

And my puppydog's sweet face that helped me when I felt horrible.

Just sharing two of my favorite things with you. And sending a gentle hug with them.

VLH

Thanks for explaining the BV abbreviation, jaycee49.

Lita57, that sounds so miserable. I'm very sorry that the cancer and the related treatments have exacted such a toll.

Lyn

bcincolorado

Lita congrats on your cancerverssary but so sorry about you side effects. Cancer sure stinks!

Meow13

Oh Lita, better treatment options are so badly needed! Hope you have some fun on your trip.

runor

I hate feeling like a bad person, but right now I really do and maybe I deserve it? Maybe I am a bad person? I don't even know anymore.

After I got out of radiation I thought, this is it. I'm going to quit doing things just because other people expect me to do them. I'm going to really take a big, fat stick to someone else's idea of my obligations. Not that I live without consideration of those around me. But I also need to quit living a life where everyone else's needs and plans get to run over my needs and plans. It's a balancing act that requires constant attention.

I hate hosting meals. For years I hosted large Christmas gatherings and it was seriously high stress. I did it. I cleaned the house. I decorated the tree. I bought the groceries. I began cooking three days in advance, you all know the routine. And then I stood in my kitchen and washed dishes until 2 in the morning (no dishwasher). I did that for years and by the end of it I was an exhausted, frazzled wreck. The Christmas after my diagnosis I had just been told that there was something suspicious in my boob and it wrecked me. Ruined me. The anxiety and dread knocked me off my feet. I thought, not this again, I can't deal with any more of this. I cancelled the Christmas dinner. There was no way I could pull it off, I could hardly get out of bed. We just had us three plus one friend and we had grilled cheese sandwiches. With the good kind of cheeses. Gourmet grilled - but still, grilled cheese sandwiches.

Now here we are coming into the Easter wknd and tonight Hub springs on me that maybe we should have his family over here. And I did NOT react with gracious compliance. I did not go with the flow and leap with joy at the chance to 'savour every moment with my loved ones'. Hey... I can love my loved ones WITHOUT planning a sit down meal for 17 people! Why does it have to be a meal? No one has a place big enough for this. It's too much work. Why can't it just be coffee and goodies? So much less work. I suggested this to Hub. But he said since it was being held at lunch time people were expecting lunch. Really? People are expecting it? Are you adult men who see how tired and old your parents are still expecting to go home and be fed? All you adult men can seriously fuck off. Can't you all see how troublesome these sit down meals are becoming and change your expectations to make this more do-able and less work for someone?

It's like I can't cope with this sort of unthinking, unchanging stupidity anymore. "Well this is the way we've always done it"... said the lemming before he and thousands of his buddies ran off a cliff to their deaths. Jeez. Grab a brain and change when you need to! But I refused to have everyone here. The thought gives me literal chest pain. My home is where I expect to go to get away from the demands of my life. SInce cancer I find myself digging in the soil and thinking, I love this and I'm going to pay close attention. Or talking with my daughter, I love this and I am going to pay close attention. Or talking with a dear friend, I love this and I am going to pay close attention. These things fill me up, make me know i am alive, bring forth gratitude and peace and awe in me. A hoard of people wanting food DOES NOT. And Hub was upset with me that I said so. He said, well I think it's pretty shitty that I can't have my own family over to my own home! Oh you can. You can! Invite them over! You clean, you shop, you cook, you serve, you clean up the catastrophe after. I will be checked into a hotel and you can tell me all about it the next day when I get home. I have hit zero tolerance for bullshit. I feel bad. But that's how it is.

Meow13

I once got a fortune cookie that said "Everything is easy for the man who doesn't do it himself". Reminded me of runor's husband.

Just like my husband telling someone on the phone, "Oh she's fine back from surgery, feeling good the cancer is gone"

Micmel

Runor ~Oh Runor~ your adult princes need to have everyone on the invitee guest list and assign a dish to each adult person attending. You do nothing. If you want in better have a casserole dish! Dessert 🧁.... seriously your DH should Be protecting you. My DH would never allow it! Let him plan the meal. Every detail. Every detail. You take your open hand and ease over to the couch and place it on your forehead and be that damn damsel needing her hero. Fuc* yeah! Wake up people. This shit is hard! I love you sister. So much!

jaycee49

Runor, of course you are not a bad person and you know that. BTW, I haven't shopped, cooked, done dishes or cleaned in YEARS. I actually MOVED OUT of our house for three years to get DH in line. Extreme? Well, yes, but desperate times call for...well, you know. "Well, I was WORKING!" he said. He was working doing what he wanted to do while I shopped, cooked, cleaned, took care of a child AND worked. Time to get priorities straight. He is retired now and does EVERYTHING. Sometimes it gets to me that I can't contribute but not much. And that moving thing was before I got sick. I got a good one even though he required some training.

Where did you find yours? In a cave?

runor

Jaycee - I take my hat off to you for taking a stand with Hub. That's a pretty gutsy thing to do and I admire guts. I hope I have some of my own in putting down my foot with Hub and his large extended family. And it's not like I said a flat out no. I said no to a sit down meal. But he can't get past the 'get together means someone has to feed us'. As I look back over my life I realize that I have NEVER liked big groups. I deal with them, when forced to, but when force and urgent imperative are not on the list, why should I?

Micmel - thank you! I agree! The men in this family need to step into reality and take a more active role in group meals. Believe me, this has come up MANY times with Hub. Falls on deaf ears. What gets me, and what I think really ticked me off yesterday, was how he is quite willing to make me feel bad. He wants everyone here, so he can feel like a hero, providing a place for all to gather, and does not care that this makes me feel bad. And when I said no, which I did, he's quite happy to act like I am the big, baddy that stops his life from being fun and happy. EIther way, I feel shitty a lot of the time.

Meow - OH MY GOD! Don't you love these comments that display a complete lack of understanding or recognition of the real situation that you live with! I've heard my Hub do the same thing, oh yeah, she's back to normal. No! No! I will NEVER be back to normal! Oh for those days when I got up and didn't have some ache or pain or obnoxious lymphedema swelling. Oh for the days when each weird cough or pain wasn't immediately pegged as spreading cancer! Some days I do very well mentally but other days it's an uphill battle and there's Hub telling someone that he basically pays no attention and has no clue. I have dear friends who ask how I am and they are wanting to know how my mental state is and am I functioning. Does my Hub ask this? NEVER! Does he acknowledge what happened? Not if he can help it. Best not to talk about it. Let's pretend there is no elephant in the room. Which is why we have this crisis of him wanting everyone here and me saying no way. I feel his family needs to change in light of the reality that they are too big, the places to host these gatherings are too small, and the people who end up hosting are getting very old and tired. READ THE WRITING PEOPLE and make changes. Instead, they barge ahead as always. This same mentality is blind to what's going on with me and announces that I am fine. I am. But I'm not. You all know what I mean.

Trishyla

Hey Runor, here's a thought. You could tell hubby you'd be more than happy to host this year's dinner for his family, as long as he's willing to hire someone to clean your house, and someone to cater the meal. Oh, and better make sure the caterers do all the clean up, because you doing any cleaning is not part of the deal. And he'd better hop to it on arranging all of this, since time is running short.

Good luck.

Trish

jaycee49

Boy, that post made me sound like a real witch (with a . I did EVERYTHING for 25 years and now he is doing EVERYTHING for the last 15 years. Yes, we just had out 40th anniversary. Why did we never split the work? Got me. Trish's idea is good and Micmel's. In our 40 years of marriage, we NEVER had a family gathering at our home. My mother-in-law did it and my sister-in-law. But they really LIKE doing it. Or did they? Was I just a taker like your DH's family? I hope not. I don't like big groups either. Yesterday, I went to lunch with three friends in their 90's. Perfect. And what an attitude adjustment. They know what's up.

ShetlandPony

Runor, you know that the person who speaks the truth and points out that something is messed up often gets treated as the bad guy for rocking the boat. Even though she is right right right. Your DH is acting on the feelings of a child who is used to being coddled. Smile and give the little tyke some choices like dividing up the project with his little friends, or hiring people to do the work. You can very helpfully provide a written list/sign-up sheet of every single thing that has to be done, along with a timeline. You can even volunteer for an item you can do, like shop for the decorative paper plates, or prepare the fruit platter. He may decide that another type of gathering would be better when he grasps the size of the project. You can say how lovely it is to see his family and how you are looking forward to it because you know they will do a great job now that you are retiring as party thrower after x number of years of doing it all yourself, because you are no longer up to it. See, very sweet but firm in assuming it is not your job.

My DH’s mom, a lovely lady, blamed me that her son had not seen her in a while. What? He has a phone and a car.

bella2013

Runor, you are not a bad person! You just did the unimaginable in DH’s eyes: you drew a line and set a boundary! Heaven forbid!

Family members think we have the energy of the 25 year olds we once were. I was exhausted just at the thought of entertaining 17 people. A maid, a caterer, and a cleaner upper is the only way it would happen in my home at this time.

Sorry DH is disappointed but there must be a dozen other places to have a family gathering. It doesn’t have to be your home.

My cancer diagnosis has giving me perspective like I have never had before. I prioritize the demands on my energy to be expended. I have finally learned to say no, without any guilt! I will not hesitate to play the cancer card

I have so much freedom! You stick to your guns girlfriend...DH will figure it out.

bcincolorado

Runor you are definitely not a bad person. Last year after major surgery not long before Easter I decided I did not want to have 12 people and 5 dogs in my house and be on my feet cooking like a crazy person and doing dishes forever and stressing so they all had a "good time" and visited. I just flat out did not invite anyone. No one specifically asked or expected since I did not say "dinner is at x time". They all survived. At Thanksgiving I let people bring dishes this time around and just said flat out "hey can you help please?" and they pitched in. More relaxed.

You have to take care of you right now. If it means buying pre-made stuff or instant potatoes oh well. Everyone survives. No more cooking for days on end for me either.

Son has a huge house and he can host the whole clan as far as I'm concerned.

edwards750

I absolutely love and support your post Runor. You go girl! It’s high time our so called better halves get the proverbial wake up call.

I hate oversized gatherings too. I have a large family so we took turns hosting holiday dinners. My mother always hosted Thanksgiving dinner. It is a big deal and very exhausting. My DH is a great cook so he would make the dinner when it was our turn but I did the grocery shopping and had clean up detail. We all brought a dish to those gatherings.

It seems some husbands need to learn the hard way about what a huge undertaking it is like having to do it all himself.

I think the vast majority of us have been the chief cook and bottle washer for so long we just get taken for granted. You would think with a C DX it would shift some of the responsibilities but some husbands just wait for us to get better like we caught a cold not DX with cancer. Seriously.

Diane

hapa

runor - the division you want with your husband is exactly the one I have with mine - if his family comes, it's on him to do all the planning, cleaning, shopping, cooking, etc. I'll help out once they get here, but that's it. If they're disappointed in how dirty our house is or how terrible the food is, etc, well they raised him so I don't know what to tell them. But they'd never complain because they're good southerners, lol! I don't buy them gifts or send birthday cards either. I have my own family to worry about. I do mine, he does his.

The downside of this is that my family is much more of a PITA. They come at least once a year and there are more of them and they're more materialistic and they're not southerners, so they complain loudly and often. But I can just tell them off and we all get over it pretty quickly, that's just how we roll.

I honestly don't know why you are putting up with your husband.

mara51506

I don't think people can conceive of the reduction of stamina that cancer treatment gives us, whether we are in active treatment or not. It takes a LOT of stamina to host dinner for a lot of people.

I am on a gentle treatment now which does work for me BUT I have no real stamina. I have to make an effort just to exercise. I live on my own so no one would be able to really help.

A restaurant meal should be planned with each family paying for their share or getting a precooked chicken or turkey and boxed stuffing depending on what people eat. Paper plates would also be a must so they could just be recycled. May not be elegant, but the most practical since they can go into the recycling. Other people in the family may also need to take over the meal. Family definitely should not spring it on people dealing with so much.

I can certainly empathize with what you are going through runor.

runor

For Hapa (and everyone) I really have to clarify that my Hub isn't a Bad Person (not, that is my job it seems). But he is definitely guilty of being ignorant, on purpose, of the realities of life. Since making that post I have said to him at least 3 times, if you want to have everyone over, you can. It's okay. We do have the room. So if it's important to you to host your entire family, do it. But I'm out. I'm leaving. You take this ball and run with it honey because I do not enjoy this and I do not want to do it anymore.

It's not so much that I don't have the energy or stamina. I think I could muster that if I needed to. I DO muster that when needed. We all do! BUt at what point do we get to put our foot down and say this is one thing I do NOT need to push my way through? This is one thing I can block from my life so I don't feel resentful and walked on and tired. How many Christmases was Hub fast asleep in bed while I was still in the kitchen washing up? Yup. I remember that shit. I remember not feeling really good about it. I remember feeling ever so slightly like I had been trampled in a stampede. Resentment means that you are not speaking your truth. I have become resentful of social obligations that someone else saddles me with. So I have found my NO. I have found it in the past but even more recently. I realize that some people hate entertaining but do so because they feel it is important - go for it. Others actually enjoy it. Go for it! But I do not enjoy it and don't want to do it so...no.

Thank you everyone for knowing what I'm talking about. I feel like such a miserable cow and my sad, blinking husband who stares at me in wide eyed silence certainly doesn't help. It's like kicking a puppy. But puppy or not, if you passive aggressive guilt me about your family, you can have them, ALL ON YOUR OWN!

Snickersmom

Runor - it seems that we all do know exactly what you are feeling! Since my BMX two years ago, my husband - and my daughters, too - seem to think okay, the cancer is gone so what the heck is her problem? How come she still has days when she stays in bed and other days when she cries most of the day? She should be so thankful that the cancer is gone. Ask how I am doing? Hell no. I should be feeling just fine. That little white pill is keeping the cancer away and the blue one prevents her from screaming and yelling at us.

Don't get me wrong. My DH and my daughters are wonderful but they just don't get it. I think they all figure that since I had surgery and the oncologist tells me I'm "cancer-free" that should be the end of it. So I should get on with my life and remember that there are a lot of others who are far worse off than me. Doesn't matter that I had two very important body parts amputated. Doesn't matter that I have to go for therapy because I have PTSD.

I think it's time to tell your hubby that if he wants to entertain, he can jump right in and do it. Start to finish. If you don't want to do it, don't. We all know it's a lot of work no matter whether it's 3 people or 30. Like they tell the kids - just say no. You are NOT a bad person.

jaycee49

Thank you Snicker, for bringing that up. I've been thinking a lot about the "you should be grateful" thing. I'm getting that from my MO's nurses a lot lately. Just an attitude. Like you are stage IV. You should be grateful to be alive. I needed an analogy to go back at people with. Thought of it yesterday, well, in the middle of the night last night. What if your husband beat you once a week. Would people say, "he could be beating you every day instead of just once a week. You should be grateful." Maybe some idiots would think that but I'm hoping most people would not. Next time I get that "you should be grateful" attitude, I'm going with that.

ctmbsikia

I kept my menu's of different family gatherings we've hosted over the years.  This Easter is the 1st in a very, very long time that there will be nothing.  I'm not sure how I really feel about that.  I won't miss the cleaning and washing dishes that's for sure, but our family dynamic is different now.  My parents are deceased, it's hard to get my siblings and their families together it seems and that does piss me off.  Last time we were together Easter was discussed and it is fine that we cannot be together.  I get it.  However my brother just turned 60, and we are trying to come up with a time and place to celebrate that.  The last message was Apr-8.  I'm not reaching out again.  It makes me soooo sad.  Just answer the damn group text.  My one brother and sister in law did not reply at all......it's rude.  

My husbands' family is a total disaster.  His mother was recently placed in a skilled nursing facility after her 2nd husband had passed away back in Oct.  The year and a half prior trying to help them out and dealing with his siblings totally exhausted me.  I finally put up boundries and none of them talk to either of us now.  I'm OK with that.  We deal with them when we have to. 

My new motto is, do only what you want to do and feel good about doing.

I'll be saying a prayer for all of you this weekend.  Have a good one. 

mara51506

I used to have two brothers and two SIL. My mother cooked a weekly Sunday dinner. When she was able to do that, we all got together.

That all changed once I got cancer. My brother and his wife initially were around but they completely disappeared. Then his wife's poor mother got lung cancer and they cared her in their home. We offered ourselves some help but they passed. She died at the house. We understood the absence then. Buy they stayed gone many months after she died. It also turned verbally abusive. He always liked to antagonize people until they blew up. His wife could be nice out of one side of her face and unkind after.

What am I getting too. When my mother died, we co owned the home and it was hard running two houses. He became angry at my older brother and I saying we kept him from our mother. We only asked for short visits as she was tired.

I was verbally abused by his wife not a week after Mom died. Andrew was quite alright. I told him he would no longer hear from me. He just said whatever.

This was 3 months ago and I am glad those people are gone. I have moved, they can't find me and my medical directive have said he is not allowed to see me at the end. I don't think he will care but it protects me.

I now only have one brother. I have a wonderful older brother and his wife and children. When people have asked about my family, I tell them I only have one. I lose out on s couple of nephews but the peace without toxic people.

Sometimes we need to do the cutting off of family members for our benefit and theirs. I feel more at peace without people who take joy in verbal abuse and abusing terminally ill people.

runor

Jaycee, what a brilliant analogy! Spot on. It really does get trite and tiring when people bitch slap you with 'you need to be grateful'. Here's the thing. Gratitude for whatever I feel gratitude for is an INTERNAL and PERSONAL decision. It is not EVER up to some outside entity to tell you how you should be feeling in your life. Maybe if you've gone to a therapist and are paying them $100 an hour to tell you to be grateful, fine. But once you've been diagnosed with cancer, your world is tilted on its axis and it's a battle to try and get back in the saddle, live a life that looks normal, while having a new mental battle to fight every day. As Snicker'smom pointed out, some days we are on our game and other days we're in bed crying.

Just today my Hub said to me (rather bizarrely) "Do I get pissed off at you that you keep acting like you have cancer when you don't actually have it?" I stared at him in dumbfounded shock because I had no response to that. A) WHAT exactly do I do that makes you think I am 'acting' like I have cancer? Every goddamned task and chore that I have ever done I am doing now! I make fires, split firewood, look after livestock, shovel snow, mow lawns, do all the housework all of the yardwork, stay home while he goes snowmobling ... what the FUCK do you think I do or do not do because I am 'acting' like I have cancer? Asshole. By what authority do you claim I don't have cancer? There is a good chance that I do not have cancer. There is just as good a chance that I do and we haven't noticed it yet. There is no proof one way or the other of my cancer status. No one is checking blood tests. No scans are being done. When I have a pain or problem they'll go looking, like they did with my lungs. I live waiting for the other shoe to drop - yet I continue on as if everything is just fine. I am grateful for the lovely moments that I can enjoy now and then, the small pleasures that make my spirit smile. But do I blaze ahead with my chest puffed out, look at me, I am cancer free, I shall live to be 100. NO! That is NOT the case and I know it. Act like I still have cancer, go pound sand with that bullshit. I have terror. I have uncertainty . I have an up close and personal reminder that one day I won't be here anymore. And I think I do pretty damn well day to day, thank you very much.

People who tell us we have lots to be grateful for are offering it as an either/ or situation. You can either be grateful OR you can be clasped in the grips of cancer, wallowing in self pity and weak -mindedness. To this I say, it's hard to grasp, Confucius, but it can be both. Both grateful and laid low all at the same time, all in the same day, all in the same breath.

Snickersmom

Runor - you sure said what I feel! I know there are people out there who are a lot worse off than me but nobody has the right to minimize what has happened to me. I kind of have to chuckle when you mention your husband saying you act like you have cancer. So how do we act? What do we do thay sets us apart from those who don't have it. And how are we supposed to act?? Yeah, that would have pissed me off big time.

I love you guys. I don't know what I would do without all of you.

mara51506

Same here. I consider this a safe space to vent frustration and stress, which will kill me faster. It acts as a buffer as well. Allows us to vent toxic words and emotions here with people who don't judge and not our families. Thus saving our feelings and sometimes theirs in turn.

So I have had many posts about the younger brother I had. I decided that I need to let go of my anger and hatred of him. I was really stressed and upset still about our parting of the ways. I spoke to my social worker and she suggested that I write him a letter, saying everything I wanted to say to him. She said I could decide to either send it or destroy it, BUT either way, write all the feelings and resentment and stress into the letter. I did what she asked me to do, wrote the letter and ultimately destroyed it. It is starting me on the path to healing myself. It won't change the separation (too much happened) but changes my thinking about it. I am no longer allowing my hurt feelings destroy the joys that I do have in my life. I have a new apartment, family members that helped me, new and old friends in my life as well. I should not allow my own feelings to dictate how I choose to live. I only hurt myself by hanging onto the anger and resentment I have.

My coping mechanism, taught to me by a friend, is every time I start to dwell on the situation, I mentally start spelling the word red. I repeat R E D in my head until the thoughts disappear. It is helping alot. My new goal is to no longer harp on the situation in my family by writing the letter and distracting any thoughts about the situation. Given time, I am confident that I will think about things less and less often.

Peregrinelady

Mara, years ago I had a counselor suggest the same thing to me. Writing a letter is a good way to release those feelings. I decided to send mine to my parents to ask about abuse from an older brother. It was difficult confronting them and it did cause a blowup for a bit, but I am so glad I did it. The brother flew to where I was and apologized. I am not suggesting this for you, just relating my experience. I have another brother who never calls me or my mother and I don’t know why. We were never that close so I haven’t pursued finding out why. I will not be writing a letter to him. Glad to hear that you are moving past the anger.

april1964

this is the first time I've ever posted to this topic... I'm so shocked and upset... my husband and I were talking about a close friend of ours who has a very serious case of bladder cancer... I said I'm glad he's getting scanned and that I also am getting scanned every year... he said "yours is different ... it's like skin cancer it's not like it's deep inside your body." I was so shocked I didn't even respond... my husband and I have been married almost 40 years...I know he loves me so it's not that... I think that when I had my surgery and radiation I minimized it all so as not to upset him but now I don't know what to think...I didn't respond and let it go but I still feel very upset...

GracieM2007

I woke up this morning with ba d pain in mybrightbshoukder. Have read back and bit might be from the liver? Brook a half a lortab. Anybody has this?

Wanderingneedle

April, I hope your husband realizes that skin cancer can become malignant. You may have minimized your treatments but cancer is serious no matter the kind or stage. Like a lot of men he may be a selective listener, only hearing those catch words like “cured” and “early stage” and not thinking it’s serious. But it is. And he’s lucky you came through treatments well antaking care of yourself.